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August 26, 2010

Bending the arc
Posted by Abi Sutherland at 04:07 PM * 304 comments

Dark times.

In the US, opponents of the Cordoba House project have mostly moved from The First Amendment only applies to religions we agree with; everything else is an ideology to The fact that we can spew lies and racist hatred is a sign of a healthy First Amendment, so yay us for being loud bigots! I confess that I am unmoved by the eloquence of this argument.

Meanwhile, here in the Netherlands, we’re nearly through our third month without a government. It has been agreed in principle that the CDA and VVD, two right-wing parties, should form a minority government which Geert Wilders’ anti-Islamic PVV can support but not join. This agreement may be falling apart as members of the CDA balk at any association with the PVV, but is no government really preferable to one that abandons the Netherlands’ long-standing commitment to the samenleving?

We all find our own ways of coping when the injustice of the world seems overwhelming. I’m not surprised that so many of us shy away from discussions of politics, and I understand and sympathize with those who fall into despair. For my part, I turn back to Martin Luther King, Jr:

I must confess, my friends, the road ahead will not always be smooth. There will be still rocky places of frustration and meandering points of bewilderment. There will be inevitable setbacks here and there. There will be those moments when the buoyancy of hope will be transformed into the fatigue of despair. Our dreams will sometimes be shattered and our ethereal hopes blasted. We may again with tear-drenched eyes have to stand before the bier of some courageous civil rights worker whose life will be snuffed out by the dastardly acts of bloodthirsty mobs. Difficult and painful as it is, we must walk on in the days ahead with an audacious faith in the future. … When our days become dreary with low-hovering clouds of despair, and when our nights become darker than a thousand midnights, let us remember that there is a creative force in this universe, working to pull down the gigantic mountains of evil, a power that is able to make a way out of no way and transform dark yesterdays into bright tomorrows. Let us realize the arc of the moral universe is long but it bends toward justice.
—Address to the Southern Christian Leadership Conference, August 16, 1967

Fine words, you say. But why should we believe them?

Let me go back a little further, to a passage by the person for whom I was named*:

…and by the way in the new Code of Laws which I suppose it will be necessary for you to make I desire you would Remember the Ladies, and be more generous and favourable to them than your ancestors. Do not put such unlimited power into the hands of the Husbands. Remember all Men would be tyrants if they could. If perticuliar care and attention is not paid to the Laidies we are determined to foment a Rebelion, and will not hold ourselves bound by any Laws in which we have no voice, or Representation.
That your Sex are Naturally Tyrannical is a Truth so thoroughly established as to admit of no dispute, but such of you as wish to be happy willingly give up the harsh title of Master for the more tender and endearing one of Friend. Why then, not put it out of the power of the vicious and the Lawless to use us with cruelty and indignity with impunity. Men of Sense in all Ages abhor those customs which treat us only as the vassals of your Sex…
—Abigail Adams, Letter to John Adams, March 31, 1776

She was an early voice for equality. Even her best friend, her husband John, didn’t share her vision of a country in which women had a voice in government. It was a long time before critical mass was reached, before the battle was joined, and longer yet before it was won†. But it was won, and ninety years ago today, the Consitution grew by thirty-nine words:

The right of citizens of the United States to vote shall not be denied or abridged by the United States or by any State on account of sex.
Congress shall have power to enforce this article by appropriate legislation.
—XIXth Amendment to the US Constitution

I sit here now typing this, an unremarkable woman, educated, enfranchised and employed. A century ago, those would have been extraordinary or impossible things. In 1945, my grandmother had to give up the work she loved because she was pregnant with my mother. My mother faced down sexism and harassment as a big-firm lawyer in the 1970’s. But I can count the “out” sexists I’ve had to work with on the fingers of one hand, and my daughter’s educational and employment prospects are as bright as my son’s.

We did that thing. We, as a society. The struggle for equality goes on for women, for gays, for the disabled, for ethnic and religious minorities. And the arc of history bends toward justice only because we bend it that way.

But we did it. We can do this, too.


* Indeed, it is due to those words that I am her namesake.
† And, by coincidence, I share a birthday with one of the most famous activists in the struggle.

Comments on Bending the arc:
#1 ::: Michael Bloom ::: (view all by) ::: August 26, 2010, 04:51 PM:

Inspiring words, all of them. Thank you for this post.

#2 ::: Serge ::: (view all by) ::: August 26, 2010, 05:02 PM:

a passage by the person for whom I was named

"Pins!"
"Saltpeter!"

#3 ::: doctorpsycho1960 ::: (view all by) ::: August 26, 2010, 05:20 PM:

Yes, inspiring words indeed.

But perhaps none more than your own:

"But we did it. We can do this, too."

Yes. From time to time it is wise to remember how much progress we have made already, to refresh and inspire us for the work yet before us.

#4 ::: Steven F ::: (view all by) ::: August 26, 2010, 05:35 PM:

I agree, all very true. In any rut of prejudice, whether it be regarding religion, orientation, gender or whatever, it is up to those who acknowledge and realize such unjust discrimination to speak up and be heard. Maybe then will the masses be moved

#5 ::: Avram ::: (view all by) ::: August 26, 2010, 05:39 PM:

Meanwhile, here in the Netherlands, we’re nearly through our third month without a government.

Don't be so loud about it! If the Tea Partiers hear that, they'll all want to move there.

Though I grant, that could make life more pleasant over here.

#6 ::: Steve C. ::: (view all by) ::: August 26, 2010, 05:40 PM:

Nicely put, Abi.

Most of the time, we inch along. We do make progress that way, but sometimes we take much bigger steps, as with the 19th amendment.

Here's to moving forward, by whatever means.

#7 ::: Giacomo ::: (view all by) ::: August 26, 2010, 05:43 PM:

But we did it. We can do this, too.

I doubt it. Sometimes I fear that we just lived the '20s and now we're going towards another bout of fascism.

I live in Italy. I look at 10 or 15 years ago and I can't find any single thing who improved in these years, and a lot of policies and public attitudes that I was certain where going to disappear soon are now normal, accepted if not the open manifestos of the parties in power.

Then I look at Europe and I can't fail to notice that social-democratic governments are becoming exceptions in a panorama of right-wing governments who flirt with the once shunned extreme right-wing xenophobic parties, if they didn't already made them partners in their coalitions.

#8 ::: ddb ::: (view all by) ::: August 26, 2010, 05:48 PM:

Giacomo@7: I've been thinking about all those right-wing parties, and the flirting with the extremes (and the growth of the extremes; they have enough seats to need to be flirted with). While we don't have clear-cut extreme parties, we do it by changing the main parties -- and they're going the same places. And things I thought were fixed are coming undone, as you suggest.

And you are not really depressing me more than I was already depressed, but yuck!

It's very strange to me how these attitudes get around so much. Ever since Thatcher followed Reagan I have wondered how it happens.

#9 ::: TexAnne ::: (view all by) ::: August 26, 2010, 05:54 PM:

My grandmother was 11 when the amendment passed, and she stopped working when she got married in 1925(?). My mother stopped working when she had me in the late 60s. If I'd had children, I wouldn't have stopped working. The fact that I felt perfectly free not to marry is another way I'm better off than they were. They *could* have stayed single, but people would have looked at them funny.

*They both volunteer(ed) but that's not the same as having an income of one's own.

#10 ::: Xopher ::: (view all by) ::: August 26, 2010, 05:59 PM:

I hope abi is right. I'm really frightened by what I see happening in America right now. A bunch of people who used to do OK, now out of work and losing their homes, and with psychopaths like Sarah Palin and Rush and Glenn fanning the flames and pointing out scapegoats...it's an awful lot like Germany in the 30s, and I'm often genuinely scared about what's going to happen to me and my friends once the National Tea Socialist Party takes over.

Make a place in your house to hide a Muslim family if the Palinites take over.

#11 ::: Jacque ::: (view all by) ::: August 26, 2010, 06:18 PM:

And over there waaayyyy off the starboard beam, we have Tom Tancredo.

#12 ::: Joel Polowin ::: (view all by) ::: August 26, 2010, 06:30 PM:

Avram @ 5 -- I imagine the libertarians would find the concept inspirational (without looking too closely into the details).

#13 ::: Stefan Jones ::: (view all by) ::: August 26, 2010, 06:49 PM:

#5, #12: No, no, no. Somalia, not Netherlands. It's had no government for years and has very lax gun laws and should be a goddamn paradise by now.

#14 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 26, 2010, 07:47 PM:

As an USian I would like for those greater freedoms and more extensive equalities to come here, but I know there's a good chance that won't happen. On the other hand, they are coming to other countries, and if my country slides into fascism and decay while the rest of the world builds the city on the hill, that's sad but acceptable.

But looking back at the 51 years since I first walked in a demonstration for peace and equality, I have to say that some things in the US are better than they were, even if we have lost some public support for the meaning of our Constitution and the society it is intended to support. Consider what was true 51 years ago:

  • Homosexuals were not only not allowed to marry, their sexual preferences were illegal in most states.

  • Anyone could be sent to jail for holding one of a number of political beliefs. If you were forced to testify about those beliefs in front of Congress and tried to exert your Constitutional right not to incriminate yourself, you could be sent to jail for "contempt of Congress".

  • Despite Brown v. Board of Education most of the Jim Crow laws were still on the books, and not just in Southern states. Interracial marriage was still illegal in many states.

  • "Cohabitation", persons of mixed sex living together without matrimony, was illegal in most states.♀♂

  • Most of the populace in the US agreed with the stated position of the government that it would be acceptable to start a nuclear war which killed half the population of the Northern Hemisphere.

  • Books could be banned for using language or expressing ideas considered unacceptable by people in positions of power.

Now I'll grant that many of the teabags who currently inhabit the port side of the ship of state would love to bring back that state of things, and that they have managed to infringe on other rights guaranteed by the Constitution. Nevertheless, as abi says, "But we did it." Having done it once, for those rights the list above implies, we can do it again for others.

Never mind that they'd earned that contempt.
♀♂ 11 years after that march Eva and I had to lie about being married in order to get an apartment lease in the state of New York.
And booksellers who carried those books could be sent to jail.

#15 ::: TexAnne ::: (view all by) ::: August 26, 2010, 08:11 PM:

Bruce, did you mean the starboard side?

#16 ::: Mattathias ::: (view all by) ::: August 26, 2010, 09:47 PM:

It could be considered a mark of progress that a sizable proportion of USians, perhaps 20%, openly call our President a Muslim, evidence to the contrary be damned. Fifty years ago, the same percentage, and likely many of the same people, would have openly called him a nigger. And two hundred years ago, much the same percentage would have owned other humans, as property, and considered such practice normal and acceptable.

There is much yet to do, yes; but a great many of the very difficult first steps have already been taken.

#17 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 27, 2010, 01:11 AM:

TexAnne, yep, I should have said starboard. I sometimes get right and left confused. I didn't learn to get them right more often than chance until I was about 6, and I still get them wrong sometimes almost 60 years later. If I could sense the weak force better maybe I could tell right from left by neutrino spins; it'd probably be more accurate than trying to remember which hand the scar is on :-)

#18 ::: KayTei ::: (view all by) ::: August 27, 2010, 01:16 AM:

"The fact that we can spew lies and racist hatred is a sign of a healthy First Amendment, so yay us for being loud bigots!"

And it is, kind of. I want people to be able to say unpopular things. That's good. Even if what they're saying is morally repugnant to me.

What frustrates me about this, actually, is that it's more of the same. "Our religious freedoms are protected, so that's okay. Other people's religious freedoms are not important."

For "religious freedoms" swap in "free speech rights."

Lather, rinse, repeat.

Because I remember the intimidation and legal chicanery under the Bush administration. And I haven't seen the Obama administration reverse things -- they just stopped talking about it openly. So, even though it seems safe for Republicans to talk out loud under this Democratic administration, that doesn't mean it's safe for me (or anyone else) to assume the trend will continue (or is anything more than window-dressing).

I think the entire premise that free speech in the US is okay is really wrong. If anything, I think we're headed in the direction of being afraid to ever say anything, because modern media will ensure we can be penalized for it, for the rest of our lives.

#19 ::: Dave Bell ::: (view all by) ::: August 27, 2010, 02:02 AM:

The bastards aren't on the port or starboard sides. They're huddled in the bilges, afraid of seeing the unexplored horizons of the sea, yet telling us exactly which course we should be steering.

#20 ::: Mattathias ::: (view all by) ::: August 27, 2010, 02:06 AM:

Bruce@17: Republican == R == Right == R == Reverse, Retrograde.

While we're at it:
Drinks Dexter Salad Sinister (for setting the table, put the drinks to the upper right of the plate and the salad to the upper left);
Sinister Square Sinistral Side (for properly orienting a chessboard, rotate it until the square in the lower left is black);
Destination Dexter, Slowing Sinister (gas is on the right, brake on the left).

Someone actually knowing Latin will likely chime on which of these make any sense whatsoever, but they help me keep track of sides. While you're at it, the queen goes on her own color.

#21 ::: Lee ::: (view all by) ::: August 27, 2010, 02:10 AM:

Bruce, #17: The one that finally stuck in my brain is that "port" and "left" have the same number of letters.

Tangentially, the way I can remember the difference between a waxing and a waning moon is similar -- left is shorter than right and wax is shorter than wane, so a waxing crescent faces left and a waning one faces right.

#22 ::: Curmudgeon ::: (view all by) ::: August 27, 2010, 02:37 AM:

There is a close symbiotic relationship between right wing extremism and economic hardship.

Economic right wing extremism--e.g. Reagan/Thatcher--creates economic hardship by concentrating wealth in the hands of people who least need it. Similarly, economic hardship is very closely correlated with increased public support for extreme right wing nationalism and xenophobia.

Parties that offer right wing extremism of this sort also tend to impose right wing extremism of the economic variety.

There is a real danger that the right wing has created a vicious circle where destructive economic policies foster nationalist thinking which enables further nationalist extremism, in an endless circle that ends in fascism and economic desolation. Germany, 1930.

The only bright spot on the horizon is that right wing voting has a demographic component. Old people support reactionary politics. As the boomer bubble (finally) dies off and the elderly lose their death grip on the political process, there is a chance that politics will return to a more moderate norm. I wouldn't bet much that democracy will last that long, however.

#23 ::: janetl ::: (view all by) ::: August 27, 2010, 02:39 AM:

Beautifully put, Abi. Thank you.

As to the discussion of whether things are better or worse today in the US, I'd say "yes". I'm very saddened by the way income inequality has become much worse, for example. The ground zero mosque madness sickens me. At the same time, I think things are a dramatically better today than they were in the 1960s or 70s for anyone who wasn't a straight, white, male Episcopalian. As recently as 1990, I was startled to get a much larger raise than I'd expected. My new boss had compared my salary to that of the other people in the same job (all men), found that I was paid much less for doing the same work. And that was in a high tech company where I'm sure people all thought that there was no significant gender discrimination. The madness that is the opposition to same sex marriage also looks like a rearguard action. And we'll fight the good fight!


#24 ::: ceeinbc ::: (view all by) ::: August 27, 2010, 02:46 AM:

Bruce, @ #17 -- I visualize an empty carafe while thinking "...there's no (red) port left...", thus remembering both the correct navigation light & the name. Works for me, anyway.

#25 ::: Camilla ::: (view all by) ::: August 27, 2010, 03:04 AM:

Thank you for this post. I was in despair last night, but reading these words has given me hope again.

#26 ::: Jules ::: (view all by) ::: August 27, 2010, 03:50 AM:

Mattathia @20, ceeinbc @24: The shorter word mnemonic works for navigation lights too: left is shorter than right, port [st] starboard, red [st] green.

Also: democrat [st] republican, and for those of us in the UK labour [st] liberal [st] conservative*.

It's enough to make one think some kind of conspiracy is at foot.

* this definitely used to work, although I'm not sure it's true any more... "new labour" has seemed more right wing than the liberals to me for some time now.

#27 ::: Mattathias ::: (view all by) ::: August 27, 2010, 04:49 AM:

It should be noted that the color code for red/green lights differs depending on where you are. The Americas, Japan, the Philippines, and Korea use IALA system B; red lights/buoys should be on the port side on departure or when headed downstream, and on starboard on return or upstream. The rest of the world uses IALA system A, which is reversed. See: http://www.sailingissues.com/navcourse9.html#direction

Bearing in mind that the US is properly described as a democratic republic, an appropriate mnemonic might be Red Right Returning in the Republic. If your context for Republic is Ireland, this won't work.

#28 ::: chris y ::: (view all by) ::: August 27, 2010, 05:12 AM:

Random points:

I'm not unduly worried about the political situation in the Netherlands; it's a civilised country and the rule of law will continue for a long time without a government. Belgium had no government for six months and nobody died. If the CDA have decided that they can't sup with the PVV even if they use a long spoon, surely that's a good thing on the whole.

I was reading last night about Britain between the wars. In the early 1920s unemployment stood at 22%. It was regarded as a huge success when it was brought down to 10.5% in the mid-30s. It was never in single figures for nearly two decades - until the next war. Yet people did survive. Democracy survived; membership of the communist and fascist parties remained trivial throughout. It's going to be a bitch, but people have gone through worse without eating each other. Don't give up yet.

#29 ::: abi ::: (view all by) ::: August 27, 2010, 05:15 AM:

Bruce Cohen @14:

Yes, exactly. And I suspect that (a) the battle for gay marriage is in its final stages*, and (b) marriage equality will do for gays what suffrage did for women. It'll be the one piece of equality that unlocks everything else.

KayTei @18:

With regard to The fact that we can spew lies and racist hatred is a sign of a healthy First Amendment, so yay us for being loud bigots, I agree entirely with the premise but don't share the conclusion. Having the freedom to be a jackhole does not make being a jackhole a virtue.

It's hard, very hard, to really inhabit the space between approval and mandate, or the space between disapproval and prohibition. I think we used to do it more by means of silence; things were not talked about so we didn't have to choose to prohibit or insist.

But silence has its own costs (domestic violence is a great example of a harm that flourished because of it), and anyway, we don't work that way any more. The internet and the talk show, reality TV and the pantopticon have buried tacit tolerance in the US, probably for good. And the new ways have new pressures, ones we haven't learned to live with comfortably yet.

I think this is the big culture change, and it's the one I really want to bend toward justice.

-----
* Which is not code for "relax", but rather "take heart". The culture has changed, and the assumptions opponents rely on to make their arguments are no longer pervasive enough to determine law and custom. And the next generations promise no return to the old ways.

#30 ::: Hanneke ::: (view all by) ::: August 27, 2010, 05:40 AM:

Abigail Sutherland, you speak righteous truth.

But I fear that at the same time we might become complacent in thinking that history proves it's going to be all right in the end, since we've won in the past. History is written by the victors. If history proves anything, it's that fundamental laws and rights can be changed - and it's this exact point that proponents of Wilders are making, when they suggest we should change our Constitution's first article (in NL, art1 is the one about equality). There is no absolute truth, and in the hypothetical scenario that they manage to realize all that they propose, history will prove *them* to have been right. We should use other arguments to counter this. I think Olberman made the right point when he quoted someone with hands-on experience, in his "special comment" the other day. "They first came for the communists and I didn't speak up because I wasn't a communist. Then they came for the trade unionists and I didn't speak up because I wasn't a trade unionist. Then they came for the Jews and I didn't speak up because I wasn't a Jew. Then they came for me, and by that time, no one was left to speak up."

Equal rights, or you yourself will have none, some day.

#31 ::: Mattathias ::: (view all by) ::: August 27, 2010, 06:26 AM:

The panopticon nature of modern US life is something consistently missed by nearly all SF writers of whom I am aware. At least until a decade or so ago, no one anticipated the pervasive nature of photographic and video capture or forecasted its effects in the hands of citizenry. For example, when bystanders capture video, police abuses of procedure are not necessarily a he said/she said type of situation. Various dystopian futures have explored the scenario of the police being one of many gangs of armed thugs, but I'm not cognizant of such a dystopia becoming aware of the nature of policing by way of a citizenry armed with cameras.

#32 ::: abi ::: (view all by) ::: August 27, 2010, 06:36 AM:

Hanneke @30:

But I fear that at the same time we might become complacent in thinking that history proves it's going to be all right in the end, since we've won in the past.

That is always a risk with this line of argument. I was trying to push back against that notion with the line that the arc of history bends toward justice only because we bend it that way.

But right now, what I hear from my friends is not the battle's all but won; we can relax. Everyone I listen to is saying, the battle's lost. We give up. And I think this is a worthwhile argument against that kind of paralyzing despair.

[Indeed, the entire post is but an expansion of something I wrote in reply to a despairing email.]

#33 ::: ajay ::: (view all by) ::: August 27, 2010, 07:06 AM:

The panopticon nature of modern US life is something consistently missed by nearly all SF writers of whom I am aware

Ken MacLeod picked it up in "The Star Fraction" - with an image of cheap, ubiquitous surveillance being used to detect human rights abuses, each of which was rapidly followed by the perpetrator having a price put on his head by various charities. "And think, there was a time when all they had to worry about from Amnesty International was letters..."

#34 ::: Adrian Smith ::: (view all by) ::: August 27, 2010, 07:32 AM:

There's a David Brin (nonfiction) book, The Transparent Society. And I think Cory Doctorow's done some stuff, possibly Charlie Stross as well.

#35 ::: Jim ::: (view all by) ::: August 27, 2010, 08:21 AM:

I remind myself that my mother walked with *her* mother in marches for the vote. That my mother graduated from college Phi Beta Kappa in the same decade that women *did* get the vote. And that I attended segregated schools and remember "Whites Only" drinking fountains and rest rooms.

Change can happen. Old attitudes die, often with the people that carry them . . .

#36 ::: Ingvar M ::: (view all by) ::: August 27, 2010, 08:22 AM:

In addition to #33 and #34, David Brin's Earth has quite a lot of public cameras, feeding the Internet with all sorts of things. I don't know if it exactly had police violence revealed, but...

#37 ::: Earl Cooley III ::: (view all by) ::: August 27, 2010, 08:27 AM:

Mattathias #31: Various dystopian futures have explored the scenario of the police being one of many gangs of armed thugs, but I'm not cognizant of such a dystopia becoming aware of the nature of policing by way of a citizenry armed with cameras.

The pushback in our current dystopian present from various out of control LEO gangs is to abuse wiretapping laws to arrest the people who document abuses of power under color of law.

#38 ::: Renatus ::: (view all by) ::: August 27, 2010, 08:40 AM:

Abi, thank you.

But right now, what I hear from my friends is not the battle's all but won; we can relax. Everyone I listen to is saying, the battle's lost. We give up. And I think this is a worthwhile argument against that kind of paralyzing despair.

Agreed, agreed, agreed.

Things aren't any better than they were 90 years ago? Pfft. Look: with my mental oddnesses and disorders, 90 years ago I would have been institutionalized or dead.

If not either of those, I'd've been either a spinster or married with children I didn't want. I wouldn't've been able to so much as hope to find more than a scattered handful of people I got along with, much less be close friends with. With my class background, there would have been no extended formal education, much much less in the way of books, very little hope of my writing seeing the outside of a notebook, and absolutely no hope of being able to so much as hint at my sexuality or genderqueerness.

Things are not perfect now. But not better? Huh! Don't make me laugh, I have important work to do in striving to make things even better.

#39 ::: Jörg Raddatz ::: (view all by) ::: August 27, 2010, 08:47 AM:

This quotation is, btw, by Martin Niemöller, a conflicted and complicated man, who originally was a very nationalistic submarine officer and changed a lot during his later life.

#40 ::: Jörg Raddatz ::: (view all by) ::: August 27, 2010, 08:48 AM:

To clarify, I was referring to the quotation in #30 by Hanneke.

#41 ::: Queenjulie ::: (view all by) ::: August 27, 2010, 09:03 AM:

That is beautiful. I am linking to it on my blog (URL in my name)--everyone should read this.

#42 ::: Antonia T. Tiger ::: (view all by) ::: August 27, 2010, 09:27 AM:

It's fantastical furry pulp adventure fiction, but...

And then they went in, and he started to worry more. Charlie, it seemed was famous. Something, it seemed, had happened in Berlin. Something rather undiplomatic. Rebecca Chan even came up and kissed him.

Saunders took note that Charlie was surprised by that. Not that any sensible man would see a reason to object to being kissed by Rebecca Chan. It was, Saunders mused, an instance of the fundamental stupidity of the Nazis.

#43 ::: ddb ::: (view all by) ::: August 27, 2010, 09:28 AM:

People who point out how much better things are now than 50 years ago are completely correct of course.

But what about compared to 10 years ago or 20 years ago or 30 years ago? Except in the area of marriage equality (which is in a complicated and ambiguous position; I hope it's about to triumph but I'm not at all sanguine about it and it's certainly enthusiastically resisted by large numbers of people), it feels to me like we achieved most of the progress a long time ago, and have been barely hanging on by our teeth since then, and in fact perhaps slipping back. This is based more on expressed attitudes than actual measures of how women and religious / ethnic / sexual minorities are treated, though.

An early "transparent society" book, in a weird way, was John Brunner's The Shockwave Rider. That dealt with the transparency of a computer worm digging out and telling people things they really ought to know.

Another book acknowledging social effects of ubiquitous surveillance is John M. Ford's Growing Up Weightless, in which one of the most valuable things teenagers have is knowledge of spots where their parents can't track them. (That one is also very disturbing in that the teenager has such a strong need for independence and just secrecy from his father, and the father as portrayed is a kind, thoughtful, highly aware man.)

#44 ::: David Harmon ::: (view all by) ::: August 27, 2010, 09:29 AM:

Hanneke #30: Having given up on TV years ago, that was the first time I'd seen Olbermann's special comment. Wow. He totally rips the bigots a new one there. Yeah, "this is America, dammit!"

#45 ::: John Mark Ockerbloom ::: (view all by) ::: August 27, 2010, 09:33 AM:

"History is written by the victors."

I'm in the process of cataloging a bunch of Confederate "lost cause" literature from about a century back that shouts loud and clear that history's written by the losers as well as the victors.

Moreover, sometimes distorted history can undo victories. Some of what I'm indexing now is history written by the United Daughters of the Confederacy, a group that was founded in large part to promote pro-Confederate versions of history. In the early 1910s, books by the UDC and others romanticized the Ku Klux Klan of the 19th century, a post-Civil War terrorist group that largely went away in the 1870s after vigorous federal prosecution. (One of the UDC books from 1914, in contrast, opens with a description of the Klan's purpose as "protecting the homes and women of the South".) Books like that, and other books and movies like _The Clansman_ and _Birth of a Nation_ gave rise to the rebirth of the Klan in 1915, which then worked effectively for decades to help suppress the civil rights promised by the post-Civil War Constitutional amendments.

Much of the Tea Party rhetoric also uses distortions of history. (And indeed, some of the talking points I've seen online recently are near-exact copies of points I've seen in old literature from groups like the UDC, or Concerned Citizens Councils, or the like.)

Distorted history can bring despair as well as false hope. Which is one reason it's important for us to remember the progress we've made in many areas, including women's rights, as well as the work and ongoing dedication required to win and preserve that progress.

#46 ::: abi ::: (view all by) ::: August 27, 2010, 09:41 AM:

Me @29:

It's hard, very hard, to really inhabit the space between approval and mandate, or the space between disapproval and prohibition. I think we used to do it more by means of silence; things were not talked about so we didn't have to choose to prohibit or insist.

But silence has its own costs (domestic violence is a great example of a harm that flourished because of it), and anyway, we don't work that way any more. The internet and the talk show, reality TV and the pantopticon have buried tacit tolerance in the US, probably for good. And the new ways have new pressures, ones we haven't learned to live with comfortably yet.

I am reminded of the of the above, seeing what a reader writes to Andrew Sullivan's column in the Atlantic:

I'm what most would consider a fairly conservative Evangelical Christian pastor. And I firmly believe in the right of homosexuals to have every civic right that any other citizen of this nation enjoys. I believe that gays and lesbians should be able to marry, to pass on benefits to their partners, and so on. If they are Americans, then they should enjoy the same rights as every American, regardless of what I think of their lifestyle.

But I do believe that homosexual behavior is sinful, and I do believe the Bible when Paul reaffirms the sinful nature of homosexual activity. I believe that some activities are not God-pleasing and yet can still be a "right" in our civic understanding.
#47 ::: ddb ::: (view all by) ::: August 27, 2010, 09:50 AM:

"History is written by the victors". This always makes me laugh; because looking at a few random books about the Civil War and the war in Vietnam in the USA will falsify this notion fairly quickly.

(Tangentially, one of the most amusing cartoons I've seen was posted on Steven Brust's refrigerator about two states ago. It was the ladder diagram for the "World Championship". The state of the contest was that the USSR had been eliminated by Afghanistan in one semi-final, and the USA by Vietnam in the other. We were still waiting to hear the outcome of the final match between Afghanistan and Vietnam.)

#48 ::: Carrie S. ::: (view all by) ::: August 27, 2010, 09:59 AM:

I believe that some activities are not God-pleasing and yet can still be a "right" in our civic understanding.

Oh if only more people were capable of making this distinction...

#49 ::: Ginger ::: (view all by) ::: August 27, 2010, 10:11 AM:

ddb @ 43: Even ten or fifteen years ago, it was much more difficult to be gay in public. I used to cut out articles on gay people or gay-related subjects, because they were rarely published, and even more rarely positive. I stopped doing this about ten years ago, because it became less and less necessary. We've gone from mocking the Stonewall rioters to sympathetic portrayals of openly lesbian actresses who want to marry their significant ot-- their wives.

Ellen DeGeneres wrote a famous sketch about a "phone call to God", which was based on the death of her girlfriend in a car accident, only Ellen could never identify her as anything more than a "roommate".

Tempora mutantur et nos mutamur in illis. The problems of today are not going to be the problems of tomorrow, just as the old problems have been changed over time. This is human nature: we focus on our current issues, and worry that we're getting nowhere. Every generation has its worries and its triumphs. As long as we keep going, not losing hope, taking heart in the knowledge that our struggles today will change tomorrow, then we can rest assured that we will make a difference.

#50 ::: Serge ::: (view all by) ::: August 27, 2010, 10:23 AM:

Ginger @ 49... When Raymond Burr passed away in 1993, I remember seeing an interview with Barbara Hale, and with a younger man whose name was given along with the identifier of "long-time friend".

#51 ::: Lee ::: (view all by) ::: August 27, 2010, 10:37 AM:

Mattathias, #31: Current events suggest that the reason police get to be thugs in a dystopian future is that when citizens start recording instances of police abuse, the act of such recording itself is quickly made illegal.

On the more-optimistic side, the Neanderthal society in Robert J. Sawyer's Neanderthal trilogy (Hominids/Humans/Hybrids) relies on universal surveillance to provide a relatively crime-free and peaceful society. This is not without its disadvantages, as Sawyer illustrates, but the citizens by and large seem to agree that the benefits are worth it.

ddb, #47: *snerk*

I will observe in passing that while it is not true that all straight white Christian men believe we are worse off now than 50 years ago, it does appear to be true that most of the people making that argument are straight white Christian men.

#52 ::: Steve C. ::: (view all by) ::: August 27, 2010, 10:46 AM:

Ginger @ 49 -

Tempora mutantur et nos mutamur in illis. The problems of today are not going to be the problems of tomorrow, just as the old problems have been changed over time. This is human nature: we focus on our current issues, and worry that we're getting nowhere. Every generation has its worries and its triumphs. As long as we keep going, not losing hope, taking heart in the knowledge that our struggles today will change tomorrow, then we can rest assured that we will make a difference.

Quoted for truth.

#53 ::: Russell Letson ::: (view all by) ::: August 27, 2010, 12:15 PM:

Curmudgeon @22: TV coverage of Tea Partiers might exaggerate the role of geezerdom, perhaps because retirees can go to rallies (as can the unemployed). And remember that those boomers (and the war babies, of whom I am one) were famously seen waving signs opposing the war in Viet Nam, and before that plenty of war babies marched in favor of civil rights. I suppose some of those enthusiasts might have gone over to the dark side, but not many of the ones I know. (Of course, my particular slice of the demographic tends to hold advanced degrees and to be employed, even if some vote Republican.)

The rest of your post, unfortunately, strikes me as on the, um, money.

#54 ::: Hanneke ::: (view all by) ::: August 27, 2010, 12:16 PM:

Oh, despairing e-mail - oof yes, I recognize that :)

I hear you; I hear the same; and I hear people say "let's give them a try; why not, we'll see that kind of coalition fail in no time. It'll be fun." (this is of course about the current situation in NL). It's a hope based on looking on, doing nothing; on the Lord will provide; on historical precedents which will magically repeat. That's what I recognized in the quote of the long arc bending towards justice: a kind of magic thinking. It's not the hope of "we're the ones we've been waiting for", of your "we bend it that way".

What if a PVV-supported coalition doesn't fail quickly? What if they manage to morph into something stable, and start bending the arc of history to fit *their* vision of justice? They will. If we can do it, so can they. Their dreamed alternative history would be one of inequality and loss of self-evident hard-won rights - because, historically, "that's only fair". Pick any recent European conflict and you'll see that line, because you can "prove" any wrong is right that way.

MLK's eloquence is beautiful, awe-inspiring; and we need his words. But I really can't believe in a moral universe steering history to a good outcome.

Yes, it's us that need to bend that arc. Because, I think, we have the better case. But we need to state that case or else it's no use. We need to generate loads of simple arguments that can be repeated in a conversation, that can take wing; and that focus on a person's most egocentric motives as well. Equal rights, or else you'll see that you're next. Our idea of justice, because the economy works better when people don't get excluded from it; aka with a bigger and more diverse pool of talent in it. And don't punish a group for what some of its individual members did: it's a law for a reason.

What I see people in *my* kind of political parties do, is sit back and make fun of the stupidity of their opponents. They don't have arguments; they have micro-issue solutions that don't really do anything on that moral universe scale. There is hope in making a plan. We're just not going to bend that arc towards justice by waiting for it.

Sorry for the length; this is just too close to home.

#55 ::: Paul A. ::: (view all by) ::: August 27, 2010, 12:18 PM:

Jules @ #26: for those of us in the UK labour [st] liberal [st] conservative*.

* this definitely used to work, although I'm not sure it's true any more... "new labour" has seemed more right wing than the liberals to me for some time now.


And "new labour" is longer than "liberal", isn't it?

#56 ::: Lori Coulson ::: (view all by) ::: August 27, 2010, 12:27 PM:

"With all its sham, drudgery, and broken dreams, it is still a beautiful world..."

#57 ::: Earl Cooley III ::: (view all by) ::: August 27, 2010, 12:39 PM:

The Second March

Spinning and spinning in the ravenous hype
The Teabagger cannot hear the Founding Father;
Things come together; the King's ghost cannot weep;
Sweet anarchy is loosed upon the Memorial,
The reason-dimmed hype is spun, and everywhere
The ceremony of cynicism is crowned;
The best drown in credulity, while the worst
Are full of misanthropic hypocrisy.

Surely some revolution is at hand;
Surely the Second March is at hand.
The Second March! Hardly are those words out
When a vast Nightmare of malefic group-think
Troubles my sight: a wasted news cycle;
A shape with elephant body and the head of a bullhorn,
A gaze of feigned despairing tears boiled by rage,
Is writing its daft chalk-words, while all about it
Snap cameras of the greedy paparazzi.
The twitter-feed drops again but now I know
That two hundred and thirty-four years of futile hope
Were ground to dust by a gabbling demagogue,
And what rough beast, its fifteen minutes come round at last,
Slouches towards Washington to be born?

#58 ::: ddb ::: (view all by) ::: August 27, 2010, 12:48 PM:

Ginger@49: It's good that it's getting better. Maybe I don't see it because in my social group the gays have been out for at least that period. Those specific individuals may still see it getting better for them. (Could still be some that aren't, of course; I disclaim any "gaydar".) And Minnesota hasn't been the hotbed of homophobia anytime recently (not claiming we're wonderful, only that lots of places are lots worse).

#59 ::: Elliott Mason ::: (view all by) ::: August 27, 2010, 01:06 PM:

Out on the trans end of the rainbow, significant advances have been made in even the past five years, the most recent being just months ago: one can now change the gender marker on one's passport by submitting a letter from your primary physician stating you "have received appropriate treatment pursuant to gender transition." There used to be a laundry-list of expensive, invasive surgeries required, and an even more privacy-invasive letter to prove you'd gotten them.

A lot of trans-hating people have been taken to court and lost lately because there are increasing numbers of judges willing to call those cases 'sex discrimination' under the 19th Amendment and Title IX.

One particular case that was decided in the past year or so involves a decorated war veteran and retired colonel, who (for perfectly obvious reasons, given our current military regulations) had put off all steps towards a long-desired gender transition until after retirement. While undergoing medical steps and taking a few years to get her feet under her, she sent out resumes for jobs she was qualified for. The Library of Congress was very interested in hiring the retired colonel for a job involving research into national-security-related stuff -- the colonel was highly qualified. However, after accepting the job offer, she took her future supervisor out to lunch and had a quiet conversation, the gist of which was that she was now female, and would be attending work that way. Suddenly, the job offer was withdrawn. She sued. Several years later (and a bit over a year ago), she won -- and the judge had no hesitation in calling it clear-cut sex discrimination, because her male former self was given a job denied her female current self (for reasons not relating to being qualified).

In the past, judges have said that similar cases were discrimination based on gender expression (not protected, until we pass an inclusive ENDA), or to deny the reality of the claimant's internal sense of gender. The general willingness of judges to now call it sex discrimination, and to say it is outright already banned, is exceedingly hopeful.

#60 ::: Serge ::: (view all by) ::: August 27, 2010, 01:40 PM:

Hanneke @ 54... But I really can't believe in a moral universe steering history to a good outcome. Yes, it's us that need to bend that arc.

Yup.

"I know you must think this is all very unfair. Maybe that's an understatement. What you don't know is I agree. I wish the world was a place where fair was the bottom line, where the kind of idealism you showed at the hearing was rewarded, not taken advantage of. Unfortunately, we don't live in that world."
"Funny, I've always believed that the world is what we make of it."
- 1997's Contact

#61 ::: Bombie ::: (view all by) ::: August 27, 2010, 02:05 PM:

Jim, @35

Progress.

#62 ::: abi ::: (view all by) ::: August 27, 2010, 02:19 PM:

But I really can't believe in a moral universe steering history to a good outcome. Yes, it's us that need to bend that arc.

There is a strain of religious thought that holds, as St Teresa of Avila* wrote, Cristo no tiene otro cuerpo que el tuyo; no tiene manos ni pies en la tierra, excepto los tuyos. ("Christ has no body now but yours; no hands or feet on earth but yours.") MLK didn't sit around waiting for Divine Providence or an angel with a fiery sword to come by and sort matters out. His vision of a moral universe steering history to a good outcome was one that did so through the hard work, courage, and sacrifice of individuals.

We can debate the presence or absence of the divine in the choices those individuals made until the cows come home, of course. But what matters is what we agree on: you can't just sit back and wait for it all to come out well, with unicorns and ponies for all.

Gotta do the work. Might have to pay the price. Whatever gets you moving, get moving.

-----
* Finally! Someone else is the namesake!

#63 ::: Mattathias ::: (view all by) ::: August 27, 2010, 02:43 PM:

Hanneke@30: Years ago, when homophobia by ballot measure was the rage here, I had that quote on a pink inverted triangle button that I wore everywhere, as a small means of solidarity.

#64 ::: Mattathias ::: (view all by) ::: August 27, 2010, 02:50 PM:

Earl@37: Yes, I read Carlos Miller's blog from time to time.

September 1 is being sporadically promoted in some circles as "Take a picture of a cop day". Cheap disposable cameras are advised, so your good kit or cell phone doesn't run risk of getting confiscated.

It's rather depressing that some find good reason to promote a single day as "Observe a constitutional and human right day". Strikes me as rather like free speech zones, or parade permits. The entire country is supposed to be a free speech zone, and freedom of assembly is supposed to be my parade permit.

#65 ::: Mattathias ::: (view all by) ::: August 27, 2010, 03:07 PM:

ddb@43: In the 1980s or so, it was damn near impossible to be "out" in high school. Only the bravest of souls made the attempt, even in supposedly liberal places. In this area we have made progress within the last 30 years.

In the 1980s or so, it was political suicide to be openly gay in politics. We now have sitting members of Congress who are openly gay, and have several large city mayors who are openly gay. In this area we have made progress within the last 30 years.

In the 1980s or so, it was also political suicide to be openly atheist, or openly much of anything other than Protestant. We are making slow progress in removing one's personal relationship with one's gods from the public political sphere, but have fewer tangible gains. We do have at least one Muslim in Congress.

In the 1980s or so, it was political suicide to discuss responsible personal drug use. We now have medical compassion laws in several states, and open discussion of the merits of drug law enforcement vs. prohibitionist economics vs. individual determination of the pursuit of happiness vs. actual practices of search and seizure. We have had many losses, but have also won victories mostly in the last twenty years in this area.

The astute may point out that the gains of the last two decades in the drug discussion come over the dead body of the presumption of innocence; that right became a corpse when SCOTUS allowed asset forfeiture on arrest in drug cases. This area does in some regards feel like a holding action, not material progress.

#66 ::: dcb ::: (view all by) ::: August 27, 2010, 03:13 PM:

Mattathias @ 31: David Brin's "Earth" is set in 2030, in a society in which you can wear "Tru-vue" goggles which record everything - and the retired wear them, and record all the local petty crimes etc.

ddb @ 43: Oh yes! The Shockwave Rider really made an impression on me when I read it in my teens, borrowed from a friend. I then had to wait several years before it came back into print and I could buy my own copy and re-read it. I love all the stuff where the worm prints out onto food and drink packets all the info. about the nasty chemicals etc. and the know effects on your health. And it was written in 1975. And it had a computer worm on the Internet. In 1975.

#67 ::: Serge ::: (view all by) ::: August 27, 2010, 03:20 PM:

Robert Reed had a story in Asimov's last year where you can focus on a stranger's face and, thru a computer link, find out everything about that person because of all the information that's been floating around about that person. Then the ain character comes across someone about whom there's absolutely no information at all...

#68 ::: Mattathias ::: (view all by) ::: August 27, 2010, 03:21 PM:

And thanks all for the book recommendations. I have been rewatching Babylon 5, and besides thinking how it was not originally produced as an instruction manual for the Bush presidency, had been noticing just how many plot devices would fail utterly in a society equipped with ubiquitous cameraphones. Some episodes bring out that "slide rules in space" feel in early SF that completely missed the transformative effect of the transistor.

Snow Crash in particular came to mind as a novel with the dystopia, the myriad enforcement organizations, and ubiquitous surveillance by organizations, but lacking the personal meatspace streaming video devices.

#69 ::: Laramie Sasseville ::: (view all by) ::: August 27, 2010, 03:25 PM:

#18 ::: KayTei

""The fact that we can spew lies and racist hatred is a sign of a healthy First Amendment, so yay us for being loud bigots!"
And it is, kind of. I want people to be able to say unpopular things. That's good. Even if what they're saying is morally repugnant to me."

The existence of laws against libel and slander suggests to me that the First Amendment wasn't intended as a license to either.

#70 ::: Linkmeister ::: (view all by) ::: August 27, 2010, 03:31 PM:

Mattathias @ #65: We do have at least one Muslim in Congress.

Two. Keith Ellison of MN and André Carson of IN.

(I looked it up the other day for a blog post; it's not like I knew it off the top of my head.)

#71 ::: ddb ::: (view all by) ::: August 27, 2010, 03:43 PM:

Mattathias@65: One of the two Muslims in Congress is Keith Ellison, who represents me.

One highschool friend came out to me shortly after graduation; he certainly hadn't felt he could tell much of anybody in higschool (1972). Another I had no contact with after highschool, but was apparently gay (had been aggressively Christian in highschool) (and eventually died of AIDS). I'm convinced we have actually made some progress on sexuality since my adolescence.

#72 ::: KayTei ::: (view all by) ::: August 27, 2010, 03:51 PM:

Abi @ 29
"I agree entirely with the premise but don't share the conclusion. Having the freedom to be a jackhole does not make being a jackhole a virtue."

No argument, actually. I don't think being a jackhole is a virtue either, but I do think it's important that free speech be defended even for jackholes, and I'm kind of comforted when I see it, because it means we haven't lost all our freedoms yet. I also want stupid and hate speech in the public arena -- so we can see these people and their discussions and act to counter their statements with the facts and arguments that will actually help address their underlying concerns. It's a lot harder to work against opinions people won't even admit they have.

I'm afraid of prohibited discussions -- discussions that go on outside of the public discourse, where people are locked in their own groupthink and never have to listen to the other side's arguments. Because that's when people start to feel they're not part of the group, and when they aren't part of the group, they start to feel they're not subject to the group's rules -- which they, at least, think don't protect them anyway, so why should they support their own oppression? It's a nasty cycle. Much easier and more effective to let them be part of the discussion, treat them with respect, but hold my own.

#73 ::: Steve C. ::: (view all by) ::: August 27, 2010, 04:02 PM:

Laramie Sasseville @69 -

The existence of laws against libel and slander suggests to me that the First Amendment wasn't intended as a license to either.

If we're going to err in a particular direction, I think it's far better to allow the possibility (even certainty) of libel and slander than to infringe on the First Amendment.

I'm particularly pleased that the SPEECH act was signed into law.

#74 ::: praisegod barebones ::: (view all by) ::: August 27, 2010, 04:04 PM:

Meanwhile, here in the Netherlands, we’re nearly through our third month without a government.

A prelimnary tangent: does anyone know if Belgium has had a govdernment recently.

Less OT: I think the difficult thing is to hold in one's head at the same time the thought expressed in the post and the equally important thought, which I see on the front-page whenever I come here that 'A better future won't happen all by itself'. But they can both be true.

Someone who I think does a good job of keeping the two thoughts together in a slightly different context is Michael Berube in his book 'Life as We Know It', which is about his son's life with Down's syndrome (and which i recommend very highly to many here. I don't always like Berube as a blogger - although he did write
one of my favourite ever blog posts (ML excluded)). In the chapter I was reading just after I read this post he talks at the same time about the enormous degree to which things have got better - at least in much of the Western world - for people with cognitive disabilities since the 1970s and at the same time, how much needs to change in order for anything like enough progress to be made.

#75 ::: Stefan Jones ::: (view all by) ::: August 27, 2010, 04:18 PM:

Monomaniacal blowhard Glen Beck is holding a "Restoring Honor" rally at the Lincoln Memorial tomorrow.

Supposedly a non-political event in support of the families of deceased veterans, but Beck's rhetoric, the place, and the timing (the anniversary of MLJ Jr.'s I Have a Dream speech) are suspect. The fact that Palin is attending is . . . suggestive. The very name of the event smells of reactionary crankiness.

A good name for a counter-rally would be Restoring Sanity.

#76 ::: abi ::: (view all by) ::: August 27, 2010, 04:21 PM:

praisegod barebones @74:

I like that Bérubé post; as someone who identifies as a sub-syndromal Aspie, and uses the traits I get from that side of my character in my professional life, I get similarly twitchy about the drive to "cure" my kind of people.

More OT, I think that most of what I've been discussing on this thread, with KayTei and Hanneke in particular, is the tension between two essentially intersecting views.

I keep murmuring, "Tastes great!" "Less filling!" as I post.

#77 ::: Bombie ::: (view all by) ::: August 27, 2010, 04:23 PM:

praisegod barebones 74

Belgium does not have a government right now, and probably wont any time soon. The latest elections were in early June. The negotiations going on right now are still preliminary. It's all rather hopeless. Or at least, the current political situation is. Life goes on, and with Belgian politics being what they are, few people let this hopelessness dictate any fundamental aspect of their lives (as far as I can tell).

Also, Belgium actually has 7 governments (or technically 6, as 2 melted together), so I guess that even when there is no federal government, we've plenty others to fall back on.

#78 ::: Earl Cooley III ::: (view all by) ::: August 27, 2010, 04:27 PM:

Stefan Jones #75: Monomaniacal blowhard Glen Beck is holding a "Restoring Honor" rally at the Lincoln Memorial tomorrow.

That's what my poem @57 is about (with a hat-tip to Yeats).

#79 ::: Mattathias ::: (view all by) ::: August 27, 2010, 04:45 PM:

praisegod@74: Speaking as someone with a disability, and who has had the available mitigation since the condition became known, I want cure more than I want accommodation.

I don't want your pity, in whatever form. Save the resources from those accommodations, those conveniences you extend to those poor unfortunates, variously called cripples, the disabled, the differently abled, etc. If you want an uncomfortable physical habitat for your own sake, don't change on my account. I don't want your charity.

I do want organs that work. Whatever resources you're putting into revising building codes and human resources manuals, please divert into meaningful stem cell research and genetic therapies.

#80 ::: KayTei ::: (view all by) ::: August 27, 2010, 04:53 PM:

Laramie Sasseville @ 69
But I am not defending slander and libel, but protected political speech. If you can prove slander or libel, in light of the existing legal standards for public figures and political speech, then we can discuss that specific case on its merits. I am even happy to join you in saying that some things are totally inappropriate, from a social and ethical perspective, and I am perfectly willing to use my free speech to express my disapproval of other people's expressed opinions.

I am also willing to agree that threats, verbal abuse, hate speech, incitement to violence, conspiracy to commit crimes, and fraud are all misuses of free speech rights. But radical political speech exists, even on the end of the spectrum with which I most strenuously disagree, that is unpopular and yet crosses none of these boundaries. And I am comforted by seeing that kind of open expression of ideas safely in play.

#81 ::: KayTei ::: (view all by) ::: August 27, 2010, 05:03 PM:

Me @ 80

It occurs to me to clarify that the above list are potential or possible abuses, and where we draw the line on that is, I think, a critical part of retaining those freedoms.

#83 ::: Bombie ::: (view all by) ::: August 27, 2010, 05:16 PM:

(via Whatever) There is injustice, but there are people bending the arc.

#84 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 27, 2010, 05:19 PM:

One very important side effect of allowing hate speech to be expressed is that as long as it can be expressed publicly, it isn't as likely to go underground and be expressed commonly in private. Public expressions can be countered and deplored in public; private expressions typically remain unopposed, and so seem more acceptable than they actually are.

Consider for example the typical "ethnic joke", which is neither tolerant nor funny. Told in public, it can be objected to by any member of the public; told in private it can only be objected to by those in the immediate audience, and silence can be treated as acceptance by the teller. And when heard in private the feeling that the group hearing it accepts it is stronger and more likely to silence those who might object under other circumstances.

#85 ::: Curmudgeon ::: (view all by) ::: August 27, 2010, 05:27 PM:

#68:

B5 was in some ways quite socially progressive for TV scifi of its era. None of the characters batted an eyelash when two male operatives were sent on an undercover mission using the cover of being married. A mere throw-away line established the pope as being female, again without anyone making an issue of it. However, all of this falls into the quality of 'telling' about equality rather than showing it.

B5 did not show equality--particularly gender equality--particularly well. It had an unfortunate habit of using its female characters as damsels in distress who needed to be bailed out by their male counterparts on a regular basis. And the female lead losing her individuality as she fell in love looked like something out of an other era.

#86 ::: KayTei ::: (view all by) ::: August 27, 2010, 05:31 PM:

abi @ 76
My apologies, part of that is lack of inflection over the Internet I think, and slightly different styles.

But yes, I agree.

#87 ::: albatross ::: (view all by) ::: August 27, 2010, 05:35 PM:

KayTei:

One interesting thing about the Ground Zero Mosque[1] dustup is the overlap between legal rights and the claims of those who are offended by something and want others to refrain on grounds of politeness. The polling data and the less smarmy and insane of the politicians commenting on this all agree that the Cordoba guys have a legal right to build a mosque there, with no legal interference. At that point, in some sense, the political debate seems like it's over, at least in the sense of any policy decisions being made or any laws passed to impose any particular decision[2].

What's left is the argument from offense. If I proclaim that I am offended by your actions, then the media protocol is that we whip out our cards and play entitlement whist[3] on the talking head political debate shows. One ugly part of that is that there aren't really any clear rules for playing that game. If we start arguing about laws and legal rights, we can come to some conclusion about whose rights win out in a conflict. But every set of rules or guidelines I've ever seen for deciding whose offense wins in this kind of argument is carved out of solid tablets of special pleading. As far as I can tell, how you feel about that has a lot to do with culture, and with how much deference you feel is due to families of 9/11 victims, and how much to public opinion in general, vs how much is due to unpopular religious minorities, or to people whose "offensive" act amounts to existing and worshiping God according to their own beliefs and traditions in plain sight of those who are taking offense. A huge amount of most peoples' reactions are driven by how they feel about Muslims--and I think most Americans don't know any Muslims, but don't much like them in the abstract.

[1] Which as I understand it is neither at ground zero, nor a mosque.

[2] Of course, if your goal is to find a content-free issue to use to whip up your base into a frenzy of anger and upset, with no real possibility of that anger being directed in some inconvenient direction, then this is a wonderful issue. Wow, whipping up hatred against a visible, unpopular religious minority is a good way of keeping a political movement going, what a surprise.

[3] Apologies to Charlie Stross.

#88 ::: praisegod barebones ::: (view all by) ::: August 27, 2010, 06:27 PM:

Matathias @ 79

I've unwisely started a conversation that I'm probably too tired to have right now (for which I apologise) - it's after midnight where I am now, and I spent the afternoon on public transport, in a hot town centre, with a child who's missing his mother, who won't be back in town till Tuesday.

But: not to leave what you said unanswered, or unthought about: my son, who is eight is autistic. I simply do not know what someone could mean by talking of him being cured. (Any more than I would know what it meant if someone proposed to -cure- my daughter of being a mother-tongue French speaker). So if someone were to say - are you in favour of mitigation or cure - I'd say: there's no question to answer.

On the other hand, when I was in my twenties, i had a long term relationship with a woman who became a wheelchair user after several years of chronic debilitating illness which left her unable to walk more than a few metres. What she wanted - and what its not beyond the bounds of possibility that she'll some day get, is a cure; but not in the foreseeable future. So in the meantime, mitgation is central to her life.

Which is an inelegant way of trying to make the point that I think Berube was trying to make in his post (and has certainly made elsewhere) - namely, that it isn't a matter of being 'for cure' or 'for mitigation': because different disabilities are indeed -different-, the things that it even makes sense to look for/hope for/work for are different in different cases.

I don't really think the question of whether to see things this way is the same question as to whether we should react with pity and or charity.
I think I can understand why you wouldn't want either. But it's a different question.

To makde this personal again: I certainly don't see either pity or charity as being central to my relationship with my son. And, although its a relationship that went wrong in a lot of ways, a long time ago, nor was it central to my relationship with my then partner. I'd like to think they were both built on love. (And one day - although it certainly won't be soon - I hope I'll get to hear what my son has to say about all of this.)

abi@74: I meant to ask you something about that last time you mentioned it (on the ground zero mosque thread, I think). But perhaps not in this thread. Or at least, not now.

(and, since it sounds like your cooking: eet smakelijk/afiyet olsun; and also ellerinizi saghlik - which is what one says to the cook when wished good appetite - it means 'health to your hand.' which is an answer to a question that someone asked on the open thread)

on the OT: yes, you're right, the conversation had got there already. I'd been composing the comment in my head while i was in town, having seen only as far as 16. And then I decided I wasn't going to abandon it, becuase i really did want to make the point about the cognitively diasabled being one group of people for whom life has got clearly better; but not nearly better enough; and for whom it won't -get- better unless we, or some of us are making it get better, even if only in small ways. (And I do like Kevin Maroney's version of St Teresa of Avila. It'sone of the things that it cheers me up to see on a regular basis.)

OK, to bed. Or I'll be needing pity and charity when the children wake up.

#89 ::: praisegod barebones ::: (view all by) ::: August 27, 2010, 06:31 PM:

except to say that I got notice of an XSS attack form NoScript and an error message from Movable Type when I tried to post my 88. It's happened before when psoting a long post late aat night, but sonce others have been reporting gremlins, I thought I'd mention it.

#90 ::: Lee ::: (view all by) ::: August 27, 2010, 07:28 PM:

Mattathias, #64: I will note, tangentially, that parade permits aren't about freedom of assembly, they're about blocking off public streets. If you want to hold a parade entirely on your own property, I don't think anyone is going to stop you. But when you want to do it on a public street, it becomes one of those "whose absolute right is more absolute?" issues.

WRT "free speech zones", however, we are 100% in agreement.

albatross, #87: A huge amount of most peoples' reactions are driven by how they feel about Muslims -- and I think most Americans don't know any Muslims, but don't much like them in the abstract.

IOW, it's very similar to the way people react on the issue of gay civil rights. Somehow this fails to surprise me.

#91 ::: Jörg Raddatz ::: (view all by) ::: August 27, 2010, 09:24 PM:

Mattathias in comment #79: May I ask you to rephrase the sentence "Save the resources from those accommodations, those conveniences you extend to those poor unfortunates, variously called cripples, the disabled, the differently abled, etc.", please.

As a non-native speaker, I am not exactly sure how to parse it. I would like to understand what you mean.

#92 ::: David Harmon ::: (view all by) ::: August 27, 2010, 09:58 PM:

Jörg Raddatz #91: I'm not Mattathias, but I am a native English speaker. I parsed it as:

Save the resources from (those accommodations and conveniences) you extend to (those poor unfortunates variously called cripples, the disabled, the differently abled, etc.)

Even with a couple of stray commas elided, the sentence is still a little overburdened -- so I added parentheses to show grouping.

#93 ::: Mattathias ::: (view all by) ::: August 27, 2010, 10:10 PM:

Jörg@91:

"Save the resources from those accommodations, those conveniences you extend to those poor unfortunates, variously called cripples, the disabled, the differently abled, etc."

==>

There are accommodations and conveniences extended to unfortunate people. Such people are here characterized as poor unfortunates, cripples, disabled, differently abled, etc. Historically, people who are missing limbs or who have impaired organ function (such as blindness or diabetes, for example) were called cripples; more recently, such people were called disabled; of late, such people are called differently abled, in an attempt to use a descriptive label that does not carry a stigma of pity or contempt. Other terms may also be in use.

Whatever resources are being put into such accommodations and conveniences, save them; do not expend them; do not make those efforts. In the context of the larger comment, do not make accommodation or convenience for cripples that you would not do for your own comfort. Any such resource thus saved, expend instead on stem cell or genetic research in pursuit of medical therapies.

* * *

The original sentence, and comment, are admittedly stilted, strongly favoring conciseness over clarity or eloquence.

#94 ::: Lila ::: (view all by) ::: August 27, 2010, 10:43 PM:

Mattathias: I either don't understand your point, or I heartily disagree. Accommodations made in favor of those whose mobility is limited (a category that includes my patient whose knee was just replaced, my mother-in-law whose legs were paralyzed by a stroke, and my neighbor who is trying to navigate the city streets while pushing twin infants in a stroller) are both necessary and reasonable. And given that such accommodations allow a good many people to earn a living who would otherwise be unable to do so, they do not constitute "charity," nor do they drain resources from society that could be used for whatever advanced "cures" you have in mind.

#95 ::: Jörg Raddatz ::: (view all by) ::: August 27, 2010, 11:16 PM:

Mattathias at #93: I honestly thank you for taking the time and effort to explain this.

But now that I know what you mean, I cannot avoid to say that I find this rather offensive. I do not know what your disability is, but you certainly have the right to choose how to live your life and how much to partipate in society. But wishing isolation from many common and uncommon social and economic activities upon others is ... let me use a weak "not nice" since I do not trust my English enough not to get uncivil otherwise.

Actually my wife likes to have been provided a wheelchair that allows her to move from one room to the other without help. She likes having got that handbike that enables her to go shopping on her own, she likes that the city is gradually removing obstacles so she can go to places other people have never to think about reaching. And since her favorite icecream shop has moved into an centuries-old building, she will love it when they have finally installed that damn ramp so she won't have to shout up the stairs any longer.

Of course, she would love to be able too walk again even more. You do not know her, you do not know what her medical problems are or whether the proposed research could ever help her. But your proposals are denying other people, people like her, the independence they can enjoy today thanks to lots of technical and architectural stuff - in exchange for possible salvation at an unspecified date in a future they might not even live to see.

Making doorss broad enough for wheelchairs, inscriptions in braille, replacing steps with ramps in buildings and buses, free-of-charge public transport, those are all things that cost money. They are necessary to ensure that certain people can actually participate in regular social life. And that is a right, born of basic human dignity, and denying it is discrimination. Lots of people worked and fought hard to have that established. It is no effing charity. People with disabilities also get soemtimes told "Yes, you have those rights, but why can't you be noble by not asking for their actual expensive implication?" B*llsh*t. And yes, medical research should be funded also. Not instead of it.

Yes, I am getting worked up. I do not want to insult you. Plus, I realize I am arguing from an European perspective, you might live elsewhere and things might be done very differently there. So I think I better stop here.

#96 ::: Joel Polowin ::: (view all by) ::: August 27, 2010, 11:20 PM:

I will say that while I have been waiting for the surgery that I hope will correct my back problems -- surgery which keeps being delayed, to my fury and despair -- I have been very appreciative of little things like automatic door-opener systems which make it much easier for me to continue with such activities as I'm still able to manage.

#97 ::: Lee ::: (view all by) ::: August 27, 2010, 11:20 PM:

Mattathias, #93: In addition to what Lila said, I find your position astonishingly mean-spirited. Who died and made YOU king, that you should be able to make that decision for everyone whose body is less than fully capable?

Hyperlocal News: Local woman heaves huge sigh of relief at having functional desktop with real keyboard again.

#98 ::: Lee ::: (view all by) ::: August 27, 2010, 11:23 PM:

Oops! Forgot which thread I was in -- my second paragraph above should have gone into the Open Thread.

#99 ::: Jörg Raddatz ::: (view all by) ::: August 27, 2010, 11:51 PM:

Sorry, I did not intend to pile-on. Writing and proofreading my post took me so long, I did not see what Lila (who I very agree with) wrote.

#100 ::: Marilee ::: (view all by) ::: August 28, 2010, 01:10 AM:

praisegod barebones, #88, have you read Elizabeth Moon's Speed of Dark? It's fiction, but probably comes from having a son with autism.

Mattathias, #93, I don't know what it's like where you live, but I can't go up/down steps or curbs. I really appreciate the new law here in the US beginning in 2012, all new construction must meet enhanced design standards for doors, windows, elevators and bathrooms. The requirement will have to be followed by stores, restaurants, schools, stadiums, hospitals, hotels and theaters. I still won't be able to get into the houses of most of my friends, but I'll be able to get into a lot of other places.

#101 ::: TexAnne ::: (view all by) ::: August 28, 2010, 01:34 AM:

I liked Speed of Dark very much, but I went to one panel where an audience member, the parent of an autistic child, took loud exception to it. I'd be very interested to hear what Praisegod Bourbons has to say about it.

#102 ::: KayTei ::: (view all by) ::: August 28, 2010, 01:48 AM:

albatross @ 87

Yes, I agree. It's problematic that the discussion about people's feelings seems to be taking precedent over the discussion of fundamental values.

I think there is some societal expectation that no one (or, rather, no one from a traditionally oppressed group) should be allowed do anything that could make anyone else feel uncomfortable. And that's just not a liveable standard, if we are to continue moving forward.

But I don't hear it being acknowledged in the general society -- it's a discussion I think we need to have as a larger group. It's standard resistance to change stuff, but it's really what I hear, when I listen to all these arguments -- "Your actions make me uncomfortable, so you shouldn't be allowed to do that. If my actions make you uncomfortable, it's because you are insufficiently american and patriotic." There's a basic lack of self-awareness there, or at least a higher tolerance for inconsistency than I personally can handle.

(Also, I seem to be miscuing the last couple days, so if my prior post expressing my complete confusion reappears out of the aether, feel free to ignore it -- it took me a bit to figure out how your comments connected.)

#103 ::: KayTei ::: (view all by) ::: August 28, 2010, 02:39 AM:

Re: Matthias @ 93

I feel like it would be kinder not to pile on, but this is important, and I never did know when to shut up.

I do want to point out -- it seems a little inconsistent to say that it's charity to ask people to pay to accommodate existing disabilities, but it's not charity to expect those same people to pay for medical research.

Also, it's cheaper for society for people to be able to be self-reliant than for them to have to be cared for 24-7. Even with public accommodations factored in. So don't forget to factor in in home health services or institutional care, health insurance costs, and other safety net services, when you're calculating what is left over to give to research -- those are all lower, when people are enabled to be more independent. And your health costs, by the way, will be higher if people don't have access to reasonable accommodations, not just because they're forced to be more dependent on others, but because the energy they spend on navigating unaccessible public places is energy they won't have to spend on self-care and keeping themselves healthy, so they'll actually get sicker over time, on average.

You know, the longer I am alive, the more I realize how little dignity or nobility there is in suffering. And perhaps it is my ignorance, but I've never understood why it is more expensive to build new structures to universal access standards. Retrofitting, yes, I see that it is expensive, but also necessary.

Necessary because when we talk about universal access, we're not just talking about People In Wheelchairs. We're talking about old people who have limited energy and trouble with balance and who find stairs intimidating and who rely on walkers. We're talking about cancer patients, who are further knocked around by chemotherapy -- god, that can be a terrible process, even though we take it for granted. We're talking about kids with broken legs, or adults with crippling arthritis, or people recovering from surgery. Things that any of us can reasonably expect we might have to eventually deal with, frankly, should we be lucky to live long enough.

Universal access isn't about "the disabled" or "charity." It's about making sure that human beings -- in all of our life stages, and in all the different health states we will pass through in our lives -- can spend as much energy as possible contributing to society, instead of spending all our energy on trying to do minimal basic day-to-day life maintenance and trying to overcome unnecessary obstacles.

#104 ::: Allan Beatty ::: (view all by) ::: August 28, 2010, 03:07 AM:

On the general theme of free speech even for those whose speech we strongly disapprove of:

Thomas Jefferson: "I would rather be exposed to the inconveniences attending too much Liberty than those attending too small a degree of it."

Clarence Darrow: "Freedom is a hard thing to preserve. In order to have enough you must have too much."

#105 ::: praisegod barebones ::: (view all by) ::: August 28, 2010, 03:47 AM:

abi - I'm afraid that with my 74, I've inadvertently (or perhaps negligently: I probably could and, maybe should have known that this could happen) i've turned into a thread that may require a more than usual level of moderatorial surveillance. That wasn't what I mean to do: I'm sorry.

(and Teresa and Patrick: I'm sorry to be involved in another thrash at your place.)

Marilee, TexAnne 100, 101: I haven't come across Speed of Darkness and will look out for it. I have a suspicion that i've got quite a lot of not expecially cohderent things to say about representations of autism in fiction. (David Harmon - if you're around - you've probably been thinking about this sort of thing for much longer than me, and probably havbe more useful things to say: have you read Speed of Darkness?)

@76, and more closely related to where this thread started off: I heard the Niemoller quote when I was young, and it has stayed with me. But its recently struck me that it has a more optimistic converse - namely, that in at least soem times and places what is needed for evil not to triumph completely is good people, doing small things, in the way that they will. That's not to say there's no place for heroism (or even that small things can't be heroic); but heroic acts aren't the only ones that make a difference. (Which is perhaps one way of holding together the two threads here.)

#106 ::: praisegod barebones ::: (view all by) ::: August 28, 2010, 04:24 AM:

matathias 93: Are you still here? I'd much rather have this conversation with you around than join in with a chorus shouting at your back.

#107 ::: abi ::: (view all by) ::: August 28, 2010, 04:52 AM:

praisegod barebones @105:
Ach, this isn't a thrash. This isn't even close to a thrash. I know you weren't here at the time, so let me explain that this is the local baseline for thrash.

Matthias:
From my perspective, the current terminology for me is "temporarily abled". Unless I die before then, the time will come when my mobility will be limited. It's not just a desire to let those who are already less mobile than I am live productive lives that makes me willing to pay for accessibility; it's also a selfish form of long-term investment.

But leaving aside the selfish aspect, we're actually not off-topic for the thread. A society that trivializes or diminishes some of its members—making it impossible for them to get around, hold jobs, be productive rather than shut away—is not the society we should be aiming for. And a society that learns that people in wheelchairs are equal citizens is much of the way to being more comfortable with people with Down Syndrome, because the parameters of "normal" are wider.

On the other hand, I do get the frustration of someone who hopes for cure and feels that too much effort is being spent on accommodation. Particularly with the recent ruling on stem cells, which must feel like a giant step backward and, possibly, a slap in the face to those relying on that line of research.

And I have my own reasons to despise pity. But there's not a lot of it going around in this thread, trust me.

#108 ::: Bombie ::: (view all by) ::: August 28, 2010, 04:56 AM:

Mattathias @79

Having grown up with a father in a wheelchair, and having lived the practicalities of his disability at home and in society, this strikes very close to home.

While I can understand your sentiment and frustration, your solution is a selfish one, and it seems sad to me that you expect/ask for this same kind of selfish behaviour from others ("do not make accommodation or convenience for cripples that you would not do for your own comfort" @93)

Your request is also wildly unrealistic.
- I cannot see companies, say, making an estimate of how much making their buildings accommodating and accessible would cost, then donating this amount into a research fund. Transferring money this way is quite impossible.
- By not accommodating, you will not in any way lower the social cost, and thus the cost to society.
- I feel like extrapolating your argument to 'palliative care' versus 'cure', but I realise I'm getting hungry and snarky. As Jörg, I don't mean to insult, or be perceived as attacking your person.

So I'm with Lila and Jörg on this one and I heartily disagree. But I'd love to hear arguments for your view. So far you've only told us what not to do, and I'm interested to hear why not to do it.

(Semi-)Random thought on (perceived) pity: When wandering around town, one can still encounter many ancient, small doors (Ghent, Belgium is a modern/medieval city). We no longer make doors that small, as people nowadays grow considerably larger. Would you say accommodating tall people with larger doors is done out of pity? Me neither. Then why would the kind of accommodation taking into account disabled people be out of pity? I'd say it's out of a grown awareness and acceptance.

On top of that, most of the encountered accommodations are (as with Marilee's link @100) usually in the newer public buildings built according to newer building regulations. (Many of the older ones still had me going in alone as a teeny six year old to find a person in charge and to lead them to my father stuck on the porch) Usually, these kind of projects have such a grand scale, the amounts of money involved are so large, that the (possible) extra cost caused by these regulations is negligible, and the social gain very likely much greater than would this amount have gone to further research*. You'd rather not see this kind of 'pity'?


---
* I readily recognise this is debatable (and something a lot R&D departments struggle with). Their progress can be very real, but not very tangible. However, I'd argue that disabled people need tangible solutions, if even just to be able to survive until further scientific research becomes tangible.

#109 ::: Bombie ::: (view all by) ::: August 28, 2010, 05:15 AM:

Wow, it took a while to write (and clean up) my 108. Did not realise the pile had grown quite this large. KayTei @103 and abi's 'equal citizens'-bit pretty much say what I tried to get across, but far more clearly.

I'd still love to hear about and try to understand your point of view, though.

abi @107
I love "temporarily abled", as (to me) it speaks of above-average awareness.

#110 ::: abi ::: (view all by) ::: August 28, 2010, 05:47 AM:

praisegod barebones @88:
I meant to ask you something about that last time you mentioned it (on the ground zero mosque thread, I think). But perhaps not in this thread. Or at least, not now.

There are things I am happy to discuss in public, mostly to do with me. There are other matters that I'd be to glad to talk about to you, but not onstage, because they are about other people. Please feel free to email me at abi at sunpig dot com sometime.

since it sounds like your cooking: eet smakelijk/afiyet olsun; and also ellerinizi saghlik

Ah, no, the "tastes great/less filling" thing is an American cultural reference. It just means we're in disagreement about essences and quibbling about details.

#111 ::: TexAnne ::: (view all by) ::: August 28, 2010, 07:28 AM:

praisegod barebones, 105: The title is Speed of Dark, not Darkness.

#112 ::: David Harmon ::: (view all by) ::: August 28, 2010, 08:28 AM:

General: One point is that most of the accommodations for milder autistic-spectrum folks (up to Asperger's or so) amount to a bit of tolerance and patience, plus not trying to work people to the bone.

Also, I mistakenly put this in the Open Thread yesterday, reposting it here with a reply and my counter-response:

"Curing" autism: I've actually heard rumor of a guy using Transcranial Magnetic Stimulation for something of the sort... supposedly, it temporarily suppresses the social disabilities at least -- and during that time, the patient can learn social skills which are retained even when it wears off. (According to that article, a similar method can also be used to induce temporary autism in normal people, including access to at least some savant talents.)

Now, the fact that I haven't been hearing more about this since, makes me somewhat suspicious, but if it's for real, that would be the effing ideal....

Links: Study at U of Louisville (Kentucky), Australian study, Study at Harvard Med, and a first-person account from a subject in the Harvard study.

--- responding to the above:
Joel Polowin OT145!#747: That sounds creepily like the "Focus" of Vinge's A Deepness in the Sky.

It does, doesn't it? (Though the real version seems pretty temporary.) But Vinge, like most SF authors, was just extrapolating existing trends, specifically the idea of shaping humans toward an intended purpose -- in this case, their mental capacities instead of, as usual, their physical capacities (q.v boot camp, sports training, Occupational Therapy, et pluribus alia). Some capability of that sort is clearly in the works; the details don't matter so much, but what does matter is that we think about of the moral and social implications (and for that, the details do matter!).

----
Abi #107: Arrggh! Must... not... click.. more links! ;-)

#113 ::: Mattathias ::: (view all by) ::: August 28, 2010, 08:59 AM:

Hi all.

To answer a few questions sprinkled into the above dogpile:

I have a US, not a European, perspective.

My disability is not externally visible in any commonly recognizable way. Specifically, I do not have canes, crutches, a wheelchair, or other external mobility assistance devices.

I am here intermittently. I do have a life outside Making Light. If I do not respond promptly, I may be sleeping, caring for others, pulling weeds, washing dishes, or otherwise tending to my meatspace life. I am unlikely to disappear entirely over a few typed words.

Nobody died and made me king. I am nonetheless entitled to hold my opinion, and to express that opinion. I recognize that the actual construction of the US First Amendment, recognizing freedom of speech and of the press, is rather more limited in scope than is commonly understood. I am gracious to our hosts for providing a space in which differing opinions may be exchanged freely, and recognize that as this is not in any governmental sense a public space, no one is under any legal requirement to allow me continued access or continued expression in this space. However, I do believe we are all under the impression that access will not be unreasonably denied, even though it is not required.

Now, briefly because it is the middle of the night here, my primary motivator is that I am not interested in being the local scapegoat. I am not interested in being called out as "that person who made us all have wider bathrooms" or "that person who made us all have better job protections" or "that person who made us all have ramps everywhere, which are actually proving really useful for baby strollers and other wheeled or heavy loads." The "reasonable accommodations" called out in the ADA, be they lever-style door handles or whatever, are creature comforts enjoyed by many, but the disabled are set out as scapegoats causing society to undertake the expense of providing such creature comforts.

I have already been let go from one job over a perception that I was going to increase their health insurance costs. I expect this notion to be so wildly foreign to our European readers as to be incomprehensible; long may it remain so, and woe that it is comprehensible here! The former employer were rather subtle about it, so nothing was provable, and they were decent about not fighting the unemployment while I sought work elsewhere. Again, I do not disappear from the insurance pools when I work elsewhere, and everybody's insurance costs are going up fifteen percent a year, more or less, and have been for a couple of decades now; but when I sought assistance from human resources over getting proper money from the health insurance on a claim, I became the expensive cripple, the scapegoat.

I have more to say, but it will have to wait. Sleep calls.

#114 ::: Ginger ::: (view all by) ::: August 28, 2010, 09:39 AM:

Mattathias @ 113: I also have a hidden disability, one that affects social interactions without my realizing it. I'm hard of hearing, although I pass very well for a hearing person. My accommodations are requirements, not options; without them I would not be a functional member of society. I'm also the member of other marginalized groups (female, lesbian, left-handed, Jewish), so I do know what it feels like to be scapegoated in different contexts.

However, this sounds like a case of forest vs trees. Those accommodations that you feel are allowing us to be scapegoated by temporarily-abled people who are afraid of their insurance expenses are instead those accommodations that allow you to be a functional member of society, even if your dis-ability is not obvious.

Second, and more importantly, please don't fall into the pattern of blaming the victim. Being differently-abled, handicapped, crippled, or other wise different does not make us the proper targets. If someone has an issue with the ADA-required accommodations, they should be taking it up with their duly-elected Representatives and/or Senators. Remember also that in the US (where I also live), the health care system is designed to maximize profits rather than health care. This is not our fault, nor should we be responsible for keeping costs down so our employers can afford us.

Recently, on Keith Olberman, I saw a small-business owner talking about health care reform; she was looking forward to being able to afford more health care for her employees -- because it was the right thing to do and because she could then afford to hire better employees. This is the attitude we need to encourage amongst all employers.

If you were let go because of your invisible issue, then realize this: they would do the same thing to other people for similar non-acceptable reasons. This does not sound like the kind of employer I would want anyone to work for.

In fact, my employer is excellent at providing accommodations for a wide range of people, ranging from intellectual issues to physical issues. The Federal government is required to hire people with disabilities, and to provide accommodations so they can do their work. I no longer need a special telephone, as most modern phones have volume control, but I do get assistance when it's time to replace my hearing aids. The remaining accommodations are mostly social engineering, and that's an ongoing project, probably never-ending.

#115 ::: Lee ::: (view all by) ::: August 28, 2010, 09:52 AM:

Mattathias, #113: I am nonetheless entitled to hold my opinion, and to express that opinion.

Yes, you are. And I am equally entitled to disagree with it, and to express my opinion that it is both mean-spirited and, ultimately, short-sighted. As someone mentioned upthread, having the freedom to behave like a jerk does not thereby imply that being a jerk is a good thing.

#116 ::: praisegod barebones ::: (view all by) ::: August 28, 2010, 10:12 AM:

Mattathias @ 113: I get the impression that my 106 came across as intrusive. It wasn't meant to be. I'm sorry.

I could probably have said better the things I was trying to convey - namely, I didn't want the conversation to turn into one in which a group of people who didn't identify as disabled shouted down the one person in the conversation who did so identify. This, I think, wouldn't be a Good Way for a Conversation on Making Light to Go. So I was trying to signal that, although I had a fair bit still to say, I wasn't going to say it until I knew that wasn't the kind of conversation I was participating in.

Which, it now seems, it isn't. Which is good. Except that I can't participate in it right now, because I too have a life away from ML, part of which involves a small boy with a temporary spoon shortage.

#117 ::: Bombie ::: (view all by) ::: August 28, 2010, 10:27 AM:

Mattathias @113

Thank you for elaborating further. If you're trying to avoid being a scapegoat by not letting accommodations be provided, it seems to me you are fighting the wrong battle. Among other things these kind of accommodations raise public awareness, which is need if you don't want the disabled to get marginalized. We need to work on not making certain groups of people scapegoats. We shouldn't put effort into avoiding the excuses/reasons people use to turn others into scapegoats (however precise or justified these reasons may seem).

I hope that in this reply, it doesn't seem to you I'm focusing too much on the small part you provided, without seeing the/your bigger picture first. I do look forward to the rest of what you have to say.

Lee @115

Mattathias' opinion is arguably (as some of us have tried to do) short-sighted. Mean spirited? Less so. Did his opinion imply he was being a jerk? Not to me.

At least his latest reply was trying to bring understanding and was adding to the conversation. Yours? Not so much.

#118 ::: praisegod barebones ::: (view all by) ::: August 28, 2010, 11:08 AM:

Or at least, not substantively.

But abi @ 107: Ah, no, the "tastes great/less filling" thing is an American cultural reference.

In that case, in view of the intriguingness of views, please find enclosed the price of one year's subscription to your newsletter.

Umm - from context, I'm taking 'disagreeing about essentials' to be a typo.


#119 ::: abi ::: (view all by) ::: August 28, 2010, 11:20 AM:

Matthias @113:

I'm sorry you feel piled-upon. You came on quite strong, and a good deal of your phrasing sounded and felt like attacks on good-spirited people for caring about accommodating disabilities. A lot of the responses—mine included—were trying to explain how caring about accommodation doesn't make us bad people.

Of course you're welcome to post here. No one disputes or doubts that. Not everything you post will be agreed with, of course, though I think Lee is implying more jerkitude than I see in your words.

#120 ::: abi ::: (view all by) ::: August 28, 2010, 11:23 AM:

praisegod barebones @118:

Yes, typo.

#121 ::: Laramie Sasseville ::: (view all by) ::: August 28, 2010, 01:02 PM:

#80 KayTei re: Laramie Sasseville @ 69
"But I am not defending slander and libel, but protected political speech. If you can prove slander or libel, in light of the existing legal standards for public figures and political speech, then we can discuss that specific case on its merits."

I have no argument with protecting freedom of speech. I wonder why people are allowed to get away with spreading damned lies* when doing so is not protected speech, but slander and/or libel?

*Such as the ones about Obama's citizenship status and religious affiliations. These are easily proven to be lies. People who perpetuate them should be prosecuted.

#122 ::: Steve C. ::: (view all by) ::: August 28, 2010, 01:22 PM:

*Such as the ones about Obama's citizenship status and religious affiliations. These are easily proven to be lies. People who perpetuate them should be prosecuted.

No, these are easily proven to be mistaken. There is no way of proving that the utterances are lies.

And even so...lying is protected speech. Thank Ghu.

#123 ::: Earl Cooley III ::: (view all by) ::: August 28, 2010, 02:56 PM:

"This lie is protected speech."

heh.

#124 ::: praisegod barebones ::: (view all by) ::: August 28, 2010, 03:27 PM:

Tex Anne @ 115: Oops. My mental image of myself is that I'm someone with such unusually precisde powers of verbal recall that I don't ever need to go back and check what someone has actually written.

I'm also, of course, a flawless typist,and much less than usually ssusceptible to the Dunning Kruger effect.

#125 ::: TexAnne ::: (view all by) ::: August 28, 2010, 03:38 PM:

praisegod, 124: I just wanted to save you the frustration of googling the wrong title.

#126 ::: albatross ::: (view all by) ::: August 28, 2010, 03:57 PM:

Larramie:

Imagine that you believed that Obama might not really be a citizen. Would having people arrested for saying so really convince you otherwise? How would that have worked for earlier claims that Bush was a cokehead, or that the feds were secretly snooping on everyones email and phone calls?

#127 ::: praisegod barebones ::: (view all by) ::: August 28, 2010, 04:00 PM:

TexAnne@ 125: Thank you!

In lieu of having anything interesting to say about a book I haven't read yet, or indeed about any other fictional portrayal of autism, I wonder whether it's worth saying that the one thing I've read in the not-quite-two-years since my son was diagnosed (or to be more accurate, since the diagnosis which had apparently been made some time before was communicated to us) that's really made sense to me of the experience of being the parent of an autistic child is Audrey Niffenegger's 'The Time - Traveller's Wife'. Not that being autistic is anything like involuntary time-travel of course: just the double narrative of one person trhying to make sense of this strange condition from the outside; and the other, to whom it is part of their day-to-day existence struggling to build a relationship with someone who we know they WILL, whatever happens, have a relationship with, but to whom their life is completely strange. (And also the fact that, in the book, gur gvzr geniry vf oebhtug ba - nf nhgvfgvp puvyqera'f zryg-qbjaf fb bsgra ner - ol fgerff. And that Henry's wife is all the time trying to negotiate a condition which becomes utterly familiar to her in a world to whom it - and by extension she, who has to structure her life round it - is completely unknown and incomprehensible.)

#128 ::: abi ::: (view all by) ::: August 28, 2010, 04:10 PM:

praisegod barebones @127:

I have other reasons for being unable to cope with The Time-Traveller's Wife (gur zvfpneevntrf, primarily), but I find that an interesting insight.

Although I don't experience things in anything like his intensity, I found Christopher's autism in The Curious Incident of the Dog in the Night-Time, by Mark Haddon, echoed with some of the aspects of myself that I identify as "Aspie". (I'm thinking in particular of his rules and superstitions, such as the thing about car colors.)

#129 ::: praisegod barebones ::: (view all by) ::: August 28, 2010, 05:23 PM:

Abi 128: Aah, yes, I see. Even without anything to relate that to in my own life, I found that was hard going.

And I have to say, the book took me two attempts. First time through, before my son was diagnosed, I got stuck around page 50. That's unusual for me, and I don't really know quite why. I have a feeling it struck a chord, although I couldn't at the time say why. But the second time, having made the link I found it compelling.

(There's also something wonderful, and not entirely unrelated to the topic of the thread, near the end. I don't even want to put it in rot-13, just in case you haven't finished it and at some time decide to. I have the feeling that you might be tempted to use the cypher if I put it here.)

'The Curious Incident': interesting you should say that, as it was the book I wanted to avoid talking about: I read it about 10 years ago, when I knew - or thought I knew - something about autism on a theoretical level, but it hadn't really entered into me life in any practical way. At the time, although I enjoyed the story, I found it unconvincing as a portrayal of autism: I found myself thinking that someone who was as severely autistic as the main character was portrayed as being just wouldn't be able to narrate themselves at all. I'm not sure whether I would think that now. (Brief sketch of an explanation: at the time I was being encouraged to understand autism in terms of Simon Baron-Cohen's 'mind-blindness' account of autism, and that made the thought about narration seem plausible. For various reasons, which won't easily go into a blog comment, I now suspect that that view of autism is just hopelessly misconceived, and I think that woudl make a big difference to how I saw the portrayal.)

Incidentally, the slight plinking sound that you can hear at the bottom of this comment is either the sound of a penny very slowly dropping about something you said at 74; or alternatively the sound of 2 and 2 being jammed together to make 17.

And before I forget or fall asleep, thank you for the offering me the chance of emailing. (Quick question - does having access to the backend of the blog give you easy access to my email? I know that View All By sorts by email address, but I don't know whether it hides it from frontpagers and moderators.) I'm fairly sure the question is one you could answer on-stage, as it were; but perhaps better safe than sorry.

#130 ::: praisegod barebones ::: (view all by) ::: August 28, 2010, 05:25 PM:

Incidentally, I just got the same XSS warning as I did this time yesterday. Seems only to happen with longish posts made after midnight (local time)...

#131 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 28, 2010, 05:59 PM:

praisegod barebones:

That XSS warning popped up from NoScript on a regular basis for me before I switched browsers from Firefox to Chrome. IIRC the cause was NoScript being confused by the presence of either semicolons or quotation marks❞ in the text it was analyzing rather than a real XSS attack. Because it's innocuous, you can click on "Unsafe Reload" in the NoScript notification, and ignore the problem.

❞ I tend to distrust quotation in web applications, so I may be projecting here; any code that uses a SQL database is suspect because of the incredible brokenness that is SQL quotation-handling.

#132 ::: abi ::: (view all by) ::: August 28, 2010, 06:10 PM:

praisegod barebones @129:

The Curious Incident is the inevitable title in any autism + books discussion; I'd have been surprised if you hadn't read it. Not being au fait with current theories of autism*, I read it as it was, and found it compelling. There's certainly a subclass of Aspie that I refer to as Explainers (which rather proves that I am one myself). So I didn't find it implausible to read a narrative by an autistic Explainer.

As for the matter of email addresses, yes, I do have access to yours through the back end. However, I don't feel comfortable barging into your inbox to talk about a matter so close to your own life if you don't want to. I wanted you to control whether or not we correspond; I have enough power in this relationship as it is.

(Also, peripherally, your comment number references haven't been lining up of late. I have you as the commenter at 74, which makes me wonder what penny, exactly, has dropped on a reread...?)

-----
* My own theories of Asperger's have to do with a reduced amount of preprocessing and prioritization of inputs into the brain. But these are bucket diagnoses, and what works to explain what I have seen of the syndrome in my life doesn't necessarily cover others' experiences.

#133 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 28, 2010, 06:31 PM:

albatross @ 87:

One subtle and vicious motivation for playing the offense card is to marginalize groups to whom the player doesn't want to accord full citizenship. If {blacks, queers, Muslims, Jews, women, autistics, paraplegics, obese people...} are prevented from publicly deploring the discriminations imposed on them by the privileged, then the privileged can claim not to know about the discrimination, or not believe that it is real. The argument that disadvantaged¤ people of any class should keep quiet because of pride, politeness, demureness, or any other reason that absolves others from thinking about them is part of the dynamics of privilege, and not an argument that even needs refutation because it's not advanced in good faith.

¤ By which I mean those to whom advantage has been denied.

#134 ::: Xopher ::: (view all by) ::: August 28, 2010, 09:23 PM:

abi 107: O gods. I had successfully repressed all memory of that thrash. I read down until I saw the name PublicRadioVet...and when I came to I was hiding under the bed and my throat was raw from screaming. My doctor says that with the right medication I should be all right in a few months. Meanwhile, I understand that wrap-around sleeves are in fashion this year...at least that's what the big guys in white tell me.

#135 ::: Lee ::: (view all by) ::: August 28, 2010, 10:30 PM:

abi, #119: I thought I was seeing a lead-up to a combination of the "brave stance" and "echo chamber" tropes, which made me perhaps more testy than I should have been. If I was mistaken, then I apologize.

#136 ::: Marilee ::: (view all by) ::: August 29, 2010, 12:12 AM:

Bombie, #109, in the US disability communities, I usually hear/see "Temporarily Able Bodied" which turns into TAB. I really detest being called "differently abled," but "handicapped" or "disabled" are fine.

#137 ::: praisegod barebones ::: (view all by) ::: August 29, 2010, 01:07 AM:

abi@132: for 74 read 76; and take the query as to whether you have my email address via the back-end as invitation to email me there, if you want to.

(Also, for 'looked 4th, read 'looked forth'; for 'sausage' read 'hostage'; and for 'peasant' read 'pheasant' throughout.)

Bruce Cohen STM @ 131: thanks!

#138 ::: KayTei ::: (view all by) ::: August 29, 2010, 01:59 AM:

Marilee @ 136
I hear that. For myself, I don't care what people call it, as long as they don't try to tell me how to self-identify. The number of well-meaning people who've tried to instruct me on how I should approach my physical limitations from a more "psychologically healthy" perspective... Irritating. Just irritating.

I particularly dislike the "person with [name of condition]" construction. Also, while I appreciate the delicacy of "traumatic brain injury," I'm far more likely to pop out with "brain damage" at this point in my life. I think we as a society need to stop dancing around the various forms of mental trauma and learn to face it head on.

I do like the descriptor "temporarily able-bodied." I think it's a truer acknowledgement than pretending that physical limitations are the exception.

#139 ::: KayTei ::: (view all by) ::: August 29, 2010, 02:12 AM:

Laremie Sasseville @ 121
I agree, I'm pretty troubled by that. But one of the rules about slander and libel is that the person it's directed against is the one who gets to decide whether to pursue the claim. If the President decided to sue on that basis, I'd totally support his right to do so. But he's chosen not to put his energy there.

#140 ::: Laramie Sasseville ::: (view all by) ::: August 29, 2010, 12:20 PM:

#122 :Steve C. "lying is protected speech"

Libelous, slanderous lies are not protected speech; they are actionable at law.

It's debatable whether suing for it in political situations would have a desirable outcome, but there are so many people out there today who believe the lies I kinda wish they'd test the case.

#141 ::: Mark ::: (view all by) ::: August 29, 2010, 12:45 PM:

Steve C and Laramie Sasseville, passim: For a public figure to prevail in a defamation lawsuit, the additional element of "actual malice" has to be proven - that the person making the statement knew the statement to be false, or issued the statement with reckless disregard as to its truth. This is assumed to be a prohibitively high bar, but in the case of Faux News and the birthers, I wonder. Unfortunately, the way the courts tend to view these matters, it would take something on the level of Rupert Murdoch's signature on a memo saying bury this other evidence and run the story anyway to succeed.

#142 ::: Steve C. ::: (view all by) ::: August 29, 2010, 12:55 PM:

Mark, true enough. The point I most emphatically want to make is that everything used against one side can also be used against the other. Thus, restrictions on speech, even defamatory speech, will backfire.

If we start advocating that anti-Obama bloggers and news organizations be muzzled, then Michael Moore and Daily Kos are the next targets.

The only effective weapon against rhetoric is....better rhetoric.

#143 ::: TexAnne ::: (view all by) ::: August 29, 2010, 01:02 PM:

Steve C., 142: The only effective weapon against rhetoric is....better rhetoric.

And this brings us back to the problem of convincing people who refuse to listen. How do we get the wilfully ignorant to stop yelling long enough for us to finish a sentence? All the rhetoric in Cicero won't help if they're just going "la la la I can't hear you, you America-hating elitist, you." They're scared, so they scream and leap. I understand, but it doesn't make me less frustrated.

#144 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 29, 2010, 03:23 PM:

TexAnne @ 143:

The best strategy I know of is to marginalize the crazies with ridicule, satire, and humor. You can't change their minds because they're not listening, so you have to minimize their impact on anyone who really is listening. This is exactly what Democrats and Liberals have not done, for reasons I am unable to fathom; by taking the fruitbats seriously (and allowing the media to do the same), they've legitimized the craziness.

#145 ::: Steve C. ::: (view all by) ::: August 29, 2010, 03:40 PM:

Bruce Cohen @ 144 -

Exactly! That's why I sometimes think that one Jon Stewart is worth five Paul Krugmans.

Not that that there isn't a need for reasoned analysis, but politics is all about emotion.

#146 ::: albatross ::: (view all by) ::: August 29, 2010, 06:03 PM:

Steve C:

Yep. If a government agency had been put in charge of suppressing political lies during the Bush administration, they would have suppressed the "lies" that we were torturing prisoners, running a network of secret prisons, abducting people off the streets of allies' cities, and routing everyone's phone and internet communications through government surveillance equipment.

#147 ::: praisegod barebones ::: (view all by) ::: August 29, 2010, 06:07 PM:

Although I'd much rather be talking to Xopher and Terry Karney on the Open Thread about how much olive oil there is in a dish of imam bayildi (one cup for 10 servings, says my usually trustworthy cookery book, which is pretty much the same as for a whole bunch of fairly standard olive oil based dishes, such as zeytintaghli taze fasulye - runner beans cooked in an olive oil and tomato sauce; something which makes me skeptical that it's an amount that would seem like an extravagance anywhere outside a war zone), my brain won't let me go back to that conversation until I feel I've finished the one I started over here.

So here are a few things that have been rattling around my head since reading Mattathias' 113.

First, - it's entirely my own fault for planting the Berube link in an earlier comment - but the whole discussion of accommodation and cure is at something of a tangent from the point that I was originally trying to make, which is that one way in which that life seems have got better in the last forty years for at least some of the cognitively-disabled-from birth (in which I'd include, I suppose, at least people with Down sydrome and people whose autism is more severe than can be accommodated just with tolerance and patience), and which Life as We Know It brought home to me is something which has to be prior to any discussion of either mitigation or cure - namely, the recognition that they have lives worth living and that they should be helped to live those lives, rather than confined to institutions form a very young age. And that, as far as I can made out, was not brought about by big dramatic acts of heroism; but by lots of small, day-to-day decisions - some of which may themselves have been heroic; but some of which will have just seemed 'the right thing to do' in a completely everyday way.

(Which is all, now I come to think it through, a long-winded way of saying 'the arc of history bends toward justice only because we bend it that way.' But there you go. Where would this community be if people never produced commentaries longer than the original text?)

Second: Matathias, in case you happen to check in to this thread again: I'm very glad that you came back and said what you had to say at 113. But, in relation to the reaction you got - I'm just going to say this: given the way you picked me out by name in addressing your comment specifically to me, it was very difficult not to read 'I don't want your pity or your charity' as a verbal punch similarly addressed specifically to me; rather than as 'I don't want other people's pity or charity', which was - I hope - what you intended.

(Given that I'd also told you something of what my day had involved prior to posting on Making Light the point about 'having a life away from ML' came across as a bit of an unnecessary slap.)

Third: if it's true - as it seems from your case to be - that the way insurance and accommodation works in the USA puts you in a position where it seems rational for one disabled person to argue against accommodations for people like my son, or Ginger, or Marilee, then I have to say: as someone whose perspective on this is only partly European, living, as I do some way East of the Bosphorus, this strikes me as something genuinely evil about the way your society has chosen to handle these things. (And the real, and perhaps srprising, culprit here I think, is the idea that rather than expecting employers to make sure ab initio that they can accommodate certain forms of disability, its better to let them make adjustments 'as the need arises'; because that gives people an incentive to make sure the need doesn't arise.) But it's not simply a fact of nature that one society deals with things like this and another does not. As someone who will some day be famous for saying it once said 'the arc of history bends toward justice, but only because we bend it that way.'

Fourth: On the matter we initially disagreed about: I don't want to repeat what Ginger, Lee, and Marilee (among others) have said, although I agree with a lot of it. But I do want to say something else, which is this: it might,conceivably, make sense to focus on curing, rather thjan accommodating some kinds of condition. But there are other kinds of condition for which cure is either inconceivable - and although I've been fascinated by the discussion between David Harmon and Benjamin Wolfe on TMS, that's still the way I see some cases of autism - or at best a very long way in the future, no matter how much we spend. I don't see why people who have those kinds of conditions should have to expect to be excluded and marginalised until a cure turns up, if it ever does.

To make this personal, yet again: My son - and lots of other children like him - needs accomodations to be above to attend an ordinary school. He's needed them to learn to talk to the extent that he's now able to. He'll need them if he's ever going to have a chance to be in a position to exercise the sorts of rights you speak so eloqently about in comment 64. He's here now, and he doesn't have fifty years to wait before other people get round to dealing with him.


#148 ::: John A Arkansawyer ::: (view all by) ::: August 29, 2010, 07:13 PM:

A minor nit to pick: Martin Luther King was (probably unconsciously) condensing the words of Theodore Parker:

I do not pretend to understand the moral universe; the arc is a long one, my eye reaches but little ways; I cannot calculate the curve and complete the figure by the experience of sight; I can divine it by conscience. And from what I see I am sure it bends towards justice.

Parker did his share of the bending, writing sermons while sheltering runaway slaves, a loaded pistol on his desk.

And I agree with him and with King, though perhaps with a different metaphysic underlying it. That slight curve in the long arc is a result of the very slight tendency of humanity toward good rather than evil. It's not much, but it's there.

#149 ::: Ginger ::: (view all by) ::: August 29, 2010, 07:14 PM:

On the concept of cure vs mitigation: for my own condition, I do not want a cure. I rather appreciate the ability to turn off my ears, such as it is, and to have silence at my command. (I use this power only for good..) However, I would want someone to research a cure because this is a disability that (a) does affect people in many ways and (b) could probably be cured in a variety of ways. I'd support research on a cure, while requesting only mitigation for myself.

For other conditions, I find research on potential cures to be of basic scientific good: without looking for answers, we'll never serendipitously find things that fit other problems, which we had no idea were connected to our original condition of study, and so on. Most scientific research (at least in the basic science arena) is dedicated to finding out more information about basic things -- how does this cell work? What does this gene do? Where do these proteins go, and why are they important? In this kind of work we find out that crystallin genes, for the protein that makes up the lens of the eye, are found throughout the body and quite possibly have other functions besides providing clear transparent lens material for us to see through. One never knows where the research will lead us, only that good research generates more questions.

#150 ::: KayTei ::: (view all by) ::: August 29, 2010, 08:35 PM:

praisegod barebones @ 147 (I can hardly believe this thread is only 147 posts long...)

Re: your comment about insurance-related job discrimination vs. accommodation...

I think this is the most difficult part of Mattathias' follow-up comment to address; I've been trying to figure out a way to condense my thought on it since I read that. That effort having failed, and usual disclaimers in place (IANAL; TINLA), let me see if I can break some of this down a bit.

First off, Mattathias is totally right, that the US's employer-based insurance and accommodations system is extremely flawed, and creates an incentive for employers to discourage accommodations claims and "minimize" the number of their employees with expensive medical conditions. Both these things are illegal, but as with all other forms of discrimination, proving it is difficult.

Whole bunch of relevant laws in play here: Most notably, ADA prohibits discrimination on the basis of disability; HIPPA says employers are not entitled to know anything about their employees' medical conditions, and there's a whole bunch of stuff about making sure that only appropriate people have access to that sort of information... all of which is completely for naught without the right kinds of evidence or documentation.

But, to my knowledge, what's not in the laws is anything governing separation of duties (the same person is allowed to work claims/employee assistance and negotiate rates, IIRC, though as a compliance professional I find it extremely questionable).

So what happens under the current system of laws (and it's mitigated but not solved by the reform act), is that in most cases, a small employer pays health care premiums based on just that employer's risk, which means that adding one high-cost or high-risk individual can result in significantly higher health care premiums for everyone else. Small employers are really sensitive to this kind of cost fluctuation, and a lot of them are prone to logic like "If I have to raise health premiums, I have to cut everyone's salaries or raise all their insurance costs (effectively cutting their salaries) or fire a bunch of people... but if John Doe (who I have identified as the source of the extra costs, whether that's accurate or not) leaves, then I don't have to make any of those tradeoffs."

They apply similar cost-benefit calculations to ergonomic accommodations; I can't tell you how many employers I had in my clerical and temp days who made it very obvious that they thought people who needed ergonomic accommodations were just whiny troublemakers. Very frank talks, nothing in writing, and good luck proving their failure to hire you as permanent staff was based on anything but your job performance or their changing staffing needs.

And they lump all disability-related costs together, even though logically they shouldn't -- the public accessibility stuff gets mixed with worker's comp and health insurance and workplace safety and prevention... at which point "getting rid of the problem" seems very practical and sensible, as does waiting for a lawsuit to force you to make changes -- because the lawsuit might never arrive, if you're lucky, and a lot of small employers get away with it, skating under the enforcement radar year after year, because they're not big enough or obvious enough to be particularly profitable to go after.

It's one reason I won't work for small businesses -- they're more likely (in my experience) to be really unprofessional and unethical about these kinds of issues (but they'll tell you every time, they're just looking out for their other employees and their bottom line). And it can be hard to tell if that's the case from just an interview, without providing even good employers with an incentive not to hire you. (I find that large corps can be corrupt, but they stand to lose more from lawsuits and fines, and are a bit more sophisticated in their analyses -- and more closely regulated. YMMV.)

I'm totally a fan of the new health care reform legislation and the disability accommodation laws -- but where small employers are concerned, in particular, this is something where the culture has to change, or we have to find ways to address the underlying business concerns, or both. Prohibiting bad behavior, even when there are fines if you get caught, just isn't enough.

So yeah, this is a place where our current system totally fails the people it is supposed to protect. Absolutely. And Mattathias gets my total empathy in his current stiuation, and agreement as to the f'cked-upness of the overall environment. I just disagree with him, in that I think rolling back the progress we have made is even worse than the current system with it's existing faults.

#151 ::: Marilee ::: (view all by) ::: August 29, 2010, 11:00 PM:

Ginger, #149, my grandfather used to turn off his hearing aids and watch football. He could tell what was happening and we could never bother him.

KayTei, #150, in some ways I was lucky. I had good health insurance from my company until I got sick enough for Medicare. I had two years before Medicare believed I was sick (new kind of renal failure, and I was in the hospital for nine months) and I had to use my mutual funds, CDs, credit cards, etc., to get through those two years, but then I had health insurance again (from the same company all along, but one of their Medicare plans). In the process I had other things happen to me -- strokes, lots of autoimmune diseases, and so forth -- but it gets taken care of. I don't think there's going to be anything in my lifetime that can fix all that.

The new health reform bill is taking things away from Medicare Advantage plans, so I'm getting my teeth fixed before the end of the year because the dental plan is going away.

#152 ::: Mattathias ::: (view all by) ::: August 30, 2010, 12:17 AM:

Dropping in briefly again. Thanks all for your perspective.

Ginger@147: So it was for your sake that They Might Be Giants wrote "Hearing Aid"! If your hearing loss is severe I'm afraid you'll have to content yourself with reading the lyrics; I'm acutely aware that music generally sounds abysmal through hearing aids.

As a thought exercise, it may be helpful to dwell on the relatively common disability of myopia, or nearsightedness. Centuries ago, myopics were effectively blind, and severe cases were near useless in society. With the advent of spectacles, myopics could be helped to live nearly normal lives. The invention of contact lenses allowed myopics to experience a better approximation of 20/20 vision. These medical devices may be considered mitigations, not cures; the myopia is still present.

A society that chooses accommodation over cure might go to considerable expense increasing the point size on all public signage, legal contracts, and the like. A society that pursues cure at least as vigorously as accommodation goes and invents LASIK surgery, which with its variants holds at least the possibility of outright curing myopia, for some patients at least.

LASIK and related therapies were inconceivable even a few decades ago. We do not know what therapies will be available a few decades from now, that may cure conditions from which some of us suffer; but there will be no more cures if we do not pursue them.

#153 ::: TexAnne ::: (view all by) ::: August 30, 2010, 12:24 AM:

Mattathias, 152: I don't understand what you're saying. Legible street signs don't mean that glasses are forbidden. LASIK doesn't mean that legible street signs are a dumb idea. What did I miss?

#154 ::: Mattathias ::: (view all by) ::: August 30, 2010, 12:29 AM:

Oops. That should read Ginger@149. And there should be a break separating that paragraph from the thought exercise that finishes out the comment.

KayTei@150: Thanks. As primary wage earner for my household, I can't indulge in the luxury of asking for accommodation that results in becoming more expensive than I am worth.

In my experience, some employers are good, patient, kind people who will accommodate as reasonably necessary without being compelled by law to do so; and others are shortsighted bean-counters who will do whatever it takes to contain costs, up to and including terminating employees who actually use the health insurance, legal ramifications be damned.

#155 ::: Mattathias ::: (view all by) ::: August 30, 2010, 12:48 AM:

TexAnne@153: Allocation of scarce resources. Think how much larger public signage could be if we had no desire to dedicate funds to medical research!

In the area of vision, over the last several decades we have chosen to allocate resources partially towards standardizing signage on the interstates, and partially towards medical research resulting in contact lenses and LASIK. In other areas of medical concern, we appear to be directing all, or nearly all, resources towards mitigations and accommodations, and none towards cures. I think the balance is too far tipped towards accommodations. My perspective is skewed by my personal experience of the difficulty in forcing certain people to undertake meaningful accommodation even when so required by law. For a given condition, the availability of a cure would enable a patient to live normally in a world populated by jerks, cretins, dolts, and other naturally occurring personality types without being unduly burdened by their insensitivity.

#156 ::: Dave Bell ::: (view all by) ::: August 30, 2010, 03:36 AM:

Mattathias, the design of a standard for good highway signage need not be incredibly expensive, and many of the principles are just good design. How you manage the signage upgrade is the problem. Don't forget to figure what maintenance would cost on an old sign.

I can recall the old-style signage on British roads, things like hand-painted cast-iron or even wood. You think that keeping them would have left more money to spend on medical research?

And I know what you mean about people choosing not to provide accommodations. Windows have a choice of themes-- chiefly colours and font sizes--which are a huge advantage for users. Some programmers still think that grey text on a shit-brown background is good UI design.

#157 ::: KayTei ::: (view all by) ::: August 30, 2010, 04:05 AM:

Mattathias @ 154
"In my experience, some employers are good, patient, kind people who will accommodate as reasonably necessary without being compelled by law to do so; and others are shortsighted bean-counters who will do whatever it takes to contain costs, up to and including terminating employees who actually use the health insurance, legal ramifications be damned."

Sadly, that's been my experience too. Though the good ones give me hope...

#158 ::: David Harmon ::: (view all by) ::: August 30, 2010, 06:41 AM:

Mattathias #155: One issue there is that it's not necessarily, or even often, the same people who are allocating the funds for accommodations, mitigations, and cures. And it's not always clear where the breakthroughs will pop up -- remember how the original March Of Dimes got end-run by Salk's vaccine! (Which is why they re-targeted towards the amorphously unfinishable "birth defects".)

#159 ::: TexAnne ::: (view all by) ::: August 30, 2010, 07:16 AM:

Mattathias, I really don't think the world works that way. Besides, cures won't work for everyone. I can't wear contacts, and I'm too nearsighted for LASIK to be a good idea. If people stopped working to make glasses better, I'd be in real trouble. You can't expect me to go without amelioration just because somebody might find a cure for newborns someday. That's cruel--and there's no guarantee the money not spent on glasses would be spent on LASIK anyway. They might decide to pay down the deficit with it, or give a rich guy a tax cut.

#160 ::: Ginger ::: (view all by) ::: August 30, 2010, 08:54 AM:

Part of the problem with supporting research is that the people who approve the funding (in the US, Congress) do not know which lines of research are going to be most profitable for the most people. By "profitable", I mean the best return on investment. No one knows -- not even fellow scientists -- which lines of study are the "best" ones to take. This is why the funding process for research is convoluted, at least here in the US. For those who don't know how it works, here's a summary: a scientist writes a proposal ("grant") which includes the science supporting her theory as well as a budget. This packet goes to the funding agency (actually, to the program officers of that agency) and is then put into a pool of similar proposals that are reviewed by fellow scientists ("review process"). All reviewed protocols are scored, and the high-scoring proposals are ranked for funding. If there is enough funding, then all the scored proposals get money; otherwise, only the highest-scored proposals will get funded and the rest will be out of luck. They fund until they run out of money. This entire cycle is repeated several times a year, across all the government funding agencies and non-governmental funding groups as well.

If the reviewers think your science is crap, or don't like your mentor, or have a competing theory, you don't necessarily get scored very high. There are ways around this, but the onus is on the researcher to find their way through the maze of agencies and funding programs.

Once you're funded, you get to hire your students and purchase your lab equipment and run your projects -- but don't forget to write yearly progress reports to your funding agency! For each funded grant, you'll need to submit a report of how much work you've completed.

Despite all this, thousands and thousands of researchers toil away in labs all across the world, working on finding the answers to various scientific questions. No one knows which line of study will turn out to have the best answers -- it might not even be in the same field of study. MS research actually overlaps with neuroscience and with cancer. AIDs research involves a lot of immunology, which is related to allergy and to autoimmune diseases, which also affect the kidneys and other organs, so where do you start looking?

Eye research is focused (pun intended) on correcting retinal damage with gene therapy. Lens issues are passe', and not likely to be correctable with gene therapy anyway. Because we have corrective devices, lens and corneal defects are not going to be a major point of research at this time. Retinal diseases are far more blinding in our modern world, and they affect far more people, so that's the area of study that is being funded. However, should someone have a Big Idea, they'd submit a proposal for that research and someday have gene therapy for fixing myopia in babies.

Accommodation is not just for us crippled folks, though. Hearing fails as people age, so all the baby boomers are taking advantage of better speakers, louder phones, closed captioning on television -- all things designed to help the HOH and deaf population. Doors are made to swing more easily, which helps those of us carrying bulky packages and not just the folks in wheelchairs. Signage is bigger because even "normal" people have trouble reading signs that are poorly designed, particularly as they speed by at 65 miles per hour. Children with disabilities are no longer warehoused in classrooms without any teaching; schools are required to provide the same level of education as for the non-disabled children. Before IDEA was passed, any child labeled "disabled" did not get an education, and children could be labeled just for being disruptive in the classroom.

There are lots and lots of good reasons to put things into law, to make people behave properly. I'm sorry that some small business owners feel the need to punish people who require more investment -- it's a shortsighted approach to life. I've seen interviews with other small business owners who are looking forward to the HCR because they'll be able to afford to provide better health care for more employees, and then they can hire better employees -- this implies that they find disabled people to be quite employable.

#161 ::: Mattathias ::: (view all by) ::: August 30, 2010, 09:22 AM:

TexAnne@159: I have a friend of a friend for whom LASIK, when it first became available, was the only therapy that could bring his vision in to the point where glasses became a useful option.

Besides, my concern is less with mitigations, like glasses and contacts, than it is with accommodations. In my experience, the accommodations mandated by the ADA are provided by good people because it's the caring thing to do regardless of law, and skirted by mean-spirited people regardless of the law. The accommodations aspect of the ADA amounts to a full employment act for attorneys, with little observable benefit for those who, like me, consider it a waste of their time and income potential to enforce via litigation what a better employer would do out of human kindness.

Dave @156: I brought up myopia as an example of an area that balances accommodation with research for cures. Please contrast with your experience with your personal disability, whatever that may be; and if your only disability is myopia, count your blessings. Others of us have less well-researched issues.

#162 ::: Serge ::: (view all by) ::: August 30, 2010, 09:45 AM:

Ginger @ 160... Part of the problem with supporting research is that the people who approve the funding (in the US, Congress) do not know

...the difference between a booster shot and a rocket booster?

#163 ::: Serge ::: (view all by) ::: August 30, 2010, 09:49 AM:

TexAnne @ 159... I'm too nearsighted for LASIK to be a good idea

I don't know if my situation is the same. I never really considered it for two reasons: (1) it's my understanding that you still need glasses under certain circumstances, (2) you're supposed to be awake and conscious and not drunk as a skunk while you know that someone is slicing up your eyeballs so thank you very much but I'll pass.

#164 ::: Jörg Raddatz ::: (view all by) ::: August 30, 2010, 10:16 AM:

Mattathias at #161

As I understand your second paragraph, accomodating to disabilities is something good people do by themselves and mean people would try to avoid in any case. So making a law demanding it it a waste of time.

As a political philosophy this is probably valid, but I think it is wrong for practical reasons.

First, the same logic goes for many other things. Good people pay taxes to support the common good, mean people try to skirt this. Should a society abolish taxation and rely on voluntary contributions?

Responsible pepole do not get intoxicated and start fistfights or cause damage by drunk driving, even without a law telling them so. Such things still happen every weekend since some people are not good in that regard. Does that make suing for compensation pointless?

Any law that imposes some restrictions on people will be ignored or circumvened by some individuals if they think they can get away with that. Litigation is a valuable tool of making "getting away with it" harder and more expensive.

No, relying on the goodwill of the people sounds good but is bad policy. It lets those in power decide whether to be noble or "smart" and leaves those with lesser power without legal recourse. It basically leads to a society where the upper class can give or withhold breadcrumbs from their table at their will.

This would be patronizing charity you are against.


#165 ::: albatross ::: (view all by) ::: August 30, 2010, 10:59 AM:

It strikes me that much of the question of accomodation is about our wealth, as a society. At one point, our society was honestly too poor to spend much on accomodations. Elevators weren't available, we were lucky to manage to provide schooling for most of the kids without any disabilities making teaching them harder, "automatic doors" amounted to doors with paid doormen. And so on.

As we've gotten richer (in both amount of stuff and technology), we've become more able to afford accomodations. We can afford to spend a bit more and make sure as many kids as possible get some kind of appropriate education. We can standardize on better road signs, and we can afford to change all the old ones out for new ones that meet some standard of readability. We can put in elevators and ramps.

There are many potential problems with those accommodations, having to do with deciding who pays when they're very expensive, and with which accommodations are too expensive, and avoiding perverse incentives like "avoid hiring newly married young women, lest you get stuck with the cost of their maternity leave and higher insurance rates to cover labor cost." But the whole issue can only come up because, compared to the past, we're so much richer.

#166 ::: Lee ::: (view all by) ::: August 30, 2010, 11:57 AM:

Mattathias, after reading the rest of your commentary, I have these observations to make:

1) No, the world does NOT revolve around you and your personal issues; other people are entitled to consideration as well, and you don't get to decide for them whether accommodation or cure is a better choice.

2) The position you are arguing, and the examples you are using in support of it, continue to make you look like an absolute jerk.

#167 ::: praisegod barebones ::: (view all by) ::: August 30, 2010, 12:12 PM:

albatross 165

(briefly , because I'm cooking dinner, and have a longish half-finished email to complete)

Much of the question of accomodation is about our wealth, as a society.

I think it's quite important to emphasise the extent to which these questions aren't just about 'what we can afford', but 'which of the many things we can afford we choose to devote resources to.'

And some of it isn't about isn't about resources at all, but about getting used to the idea of seeing certain relatively powerless groups of individuals as full members of society.

This matters a lot to me: I live in a society that's consideraably less wealthy than the USA, and which also does considerably less to accommodate disability, even in cases where it would be relatively straightforward to do so.
I don't think the first of these facts is an adequate explanation of the second.

(Here's an example to illstrate this: I work on a relatively modern campus, with relatively enlightened colleagues. Lots of buildings, including ones built in the last ten years has split level flooring, so that even where there are elevators, most of the building is inaccessible to a wheelchair user.

But it doesn't really matter. Why ? Well, because - as someone once kindly explained to me - there aren't all that many wheelchair using students or academics in this country.

And why not? I asked. Well, it's very difficult for them to study, I was told. You see, they can't get around on their own - they have to find someone who'll be prepared to accompany them everywhere, because there are usually a lot of steps on university campuses. But never mind, when we're richer it can all be sorted out.)

#168 ::: ddb ::: (view all by) ::: August 30, 2010, 12:15 PM:

So far, it seems like our medical research has done better at turning dead people into significantly disabled people (which clearly represents progress) than it has at turning disabled people into non-disabled people. (Please take as read the long and nuanced discussion about terminology in this area, and please read your preferred terminology in the places I have used the short and reasonably clear "disabled" and "non-disabled".)

While it's possible that we're just around the corner from fantastic discoveries that will pull us strongly ahead, making great strides in making people "non-disabled", I'm not sure that's the way to bet.

I'm also not happy with the implicit argument that it's worth losing a generation of disabled people to fund this advance (including both actual deaths and tremendous decreases in quality of life). I continue to think the measure of a society is how well they manage to treat their most vulnerable. (One can posit a society which does that one thing well and nothing else at all well, and indeed I would not think terribly well of such a society; I'm also doubtful it could be created or at least made stable in the real world, though.)

Between severe doubts about the efficacy and severe doubts about the morality, I cannot support this approach. Still, the observation that research on mitigation, research on cure, research on prevention, and building accommodations are in some degree competing uses of resources is something we shouldn't forget.

#169 ::: praisegod barebones ::: (view all by) ::: August 30, 2010, 12:28 PM:

Lee @ 166: Although the snark may well be a boojum at this point, I'm not sure whether it helps to be the Bellman here.

YMMV

#170 ::: John Mark Ockerbloom ::: (view all by) ::: August 30, 2010, 12:32 PM:

This recent subthread reminds me somewhat of the rhetoric I've heard from certain political pundits that we should stop "throwing money away" giving aid to the poor or unemployed, because improving the economy would lift everyone's fortunes more efficiently.

You'd often get arguments about whether the "because" part of the claim was really true. (Which was certainly debatable, especially since most of the pundits who took this line assumed "improving the economy" consisted essentially of cutting taxes and increasing the power of big business.) But I was more sympathetic to the argument that *even if* their claim about improving the economy was true, it was *still* wrong to stop helping people definitely suffering in the present, in the name of improving the lot of people in the future. Society needs to devote resources to both.

Mind you, an individual might decide to devote their own priorities to the forward-looking prospects. That's perfectly understandable; each of us can only concentrate individually on a small number of things, and we typically focus our work and our charity towards a few high-priority goals, leaving others to handle the other goals. Insisting that everyone else stop working on *their* priorities, though, is a different matter.

#171 ::: praisegod barebones ::: (view all by) ::: August 30, 2010, 12:44 PM:

I do agree, though, now I come to think of it, that it would be nice if matathias engaged with some of the examples that seem to make her/his case difficult that other people have supplied her/him with, rather than just talking about the ones it works well for.

OK, dinner preparations. Now.

#172 ::: jnh ::: (view all by) ::: August 30, 2010, 01:02 PM:

Mattathias @161:
One of the things that mandates do is level the playing field. With a mandate, doing the right thing doesn't leave a company at a competitive disadvantage. Without the mandate, it becomes the standard race-to-the-bottom, and the only way to survive is to shed the cost of being the good guy.

Mandates done correctly also help in understanding what works and what doesn't. Accessible toilets in a restroom that has too narrow of a door is a problem, or a ramp that is too steep. Yes, mandates are one-size-fits-all, which can create some odd responses: the Appalachian Mountain Club puts wheelchair accessible outhouses on mountains that aren't even approachable by chair (it's easier than getting a waiver). It has the side affect of making the restroom into a usable refuge if sudden bad weather appears or if someone is injured.
As others have (I believe) pointed out, but deserves repeating — having the disabled in the mainstream means that people become more aware of the possibility that they may become disabled. Accommodation from an early age means that more people are productive rather and don't have to be warehoused or sheltered. A lot of medical issues that would benefit from research can also turn into disabilities that need accommodation (diabetes can lead to blindness and amputations, for example). My only current issues are major diseases, one of which may kill me eventually, and I strongly believe in accommodation even though specific research might help me survive longer.

#173 ::: Mattathias ::: (view all by) ::: August 30, 2010, 01:10 PM:

Lee@166 and previous: I am unused to couching my statements as In my humble opinion..., or May it please you to consider..., or If you would be so good as to reflect upon... etc. What I state is my opinion; what you state is yours. Whether I am blunt or tangential about my statements does not alter that I have my experience, and have formed opinions about it.

I've already written off any possibility of changing your mind. I suggest you do similarly; it'll save both of us a lot of trouble.

#174 ::: TexAnne ::: (view all by) ::: August 30, 2010, 01:38 PM:

ddb, 168: I agree completely. That's much more elegantly put than my stumbling attempt.

#175 ::: Mattathias ::: (view all by) ::: August 30, 2010, 02:17 PM:

A number of you (abi, praisegod barebones, perhaps others I've missed) have mentioned autism spectrum disorders. Are you aware of current research implicating oxytocin levels and receptors? Link 1 Link 2 Popular Press

Those of us in the US can expect any resulting therapy to be ten years and a billion dollars away, and then be expensive for the next ten years after that. We can thank the FDA Phase I-III drug trials, and the need to recoup the expense therefrom, for that. In the meantime, it may be worth getting in touch with researchers, to see if there are trials you can volunteer in.

#176 ::: TexAnne ::: (view all by) ::: August 30, 2010, 02:29 PM:

Mattathias, I knew a woman whose mother had taken thalidomide. I'm *glad* the FDA has rules about drug trials.

#177 ::: Ginger ::: (view all by) ::: August 30, 2010, 02:29 PM:

Mattathias @ 175: The first link is for a paper that is in press, not yet published. The second link is for a pilot study, which is not quite the same as a full study. It suffers from small-sample bias (16 patients), and excludes females. It's a decent start, but not yet rigorous enough to base treatment upon. (The pilot study, although others may not be able to access this paper without a subscription.)

The third link is for a newsmedia review of the previous article, and as such is not a scientific review.

While it seems a worthy line of study, how does this support your contention that accommodation is not helpful? There are many autistic and autism-spectrum people in the modern workforce even as we speak, and who benefit from the accommodations required by law.

#178 ::: Bombie ::: (view all by) ::: August 30, 2010, 02:38 PM:

Mattathias @175

Yes, autistic spectrum disorders have been mentioned. Please reread carefully the context in which they were mentioned.

There's nothing wrong with you pointing out these developments. Suggesting to people - who quite clearly expressed not considering it requiring a 'cure' - to go volunteer for these developments is, quite frankly, really thick.

(e.g. praisegod barebones @88 My son, who is eight is autistic. I simply do not know what someone could mean by talking of him being cured. (Any more than I would know what it meant if someone proposed to -cure- my daughter of being a mother-tongue French speaker).)

Mattathias @173

Yes, you are entitled to your opinion, but please, try to be engaged in a conversation. You give off the impression of not really listening when what is said doesn't stroke with how you see things (as Lee, bluntly, tried to convey. See for example, both your own #175 and praisegod barebones' reasonable request @171).

#179 ::: albatross ::: (view all by) ::: August 30, 2010, 02:42 PM:

praisegod barebones:

Okay, that's a good point. I think we get both the wealth effect (when you can afford no more than a one-room schoolhouse and one teacher, you simply can't do much to accomodate special needs kids), and the visibility effect (where all through your society, you get people at various levels saying stuff like "how would you get around in that building in a wheelchair" or "how would a blind person use this?").

I guess, thinking about the wealth effect a bit more, there's another side to it: Some accomodations are basically kindness. For example, the extra money spent on humanely treating people with incurable psychiatric problems or mental deficiencies, rather than just locking them up in godawful institutions or attics, surely doesn't yield much economic benefit. It's just the only decent thing to do, given that we can afford it. On the other hand, making buildings wheelchair accessible, providing nursing rooms, etc., probably pays off in the long run, since it lets many people remain productive in the workplace for more years.

#180 ::: Mattathias ::: (view all by) ::: August 30, 2010, 02:47 PM:

TexAnne@176: I'd argue that the major upshot of the thalidomide disaster is that it's nearly impossible to get any drug labeled for use during pregnancy. Yes, FDA requires more extensive and better documented series of trials now than in the 1950s. None of that prevented Vioxx from coming to market.

#181 ::: albatross ::: (view all by) ::: August 30, 2010, 02:51 PM:

As an aside, I recall reading the idea in some book (maybe _The Discoverers_?) that the invention of glasses resulted in a vast increase in practical wealth of European society, because fine-detail craftsmen could keep working even after their vision went through the usual age-40 shift toward being farsighted. (And of course, once you have lenses being made on a large scale, you have the raw materials for telescopes and microscopes, with all that implies for science.)

I suspect that a lot of the low-cost accessibility changes (ramps, wider hallways and doors and bathroom stalls, handrails, bigger signs, elevators) have a similar (but smaller) effect--you lose the experienced people more slowly, since illness or injury that makes it really hard for you to climb four flights of stairs to get to your office every day doesn't lead you to decide that now's the time to retire. Similarly, the 8-month pregnant woman, the guy who broke his leg last week, the guy whose arthritis is just acting up this week, etc., the woman carrying four boxes--they all benefit from this infrastructure.

#182 ::: albatross ::: (view all by) ::: August 30, 2010, 02:57 PM:

TexAnne/Matthias:

Drug regulation is a balance, with no possible way of avoiding all the possible bad outcomes. Be too restrictive about what you let into your market, and you may leave a decade of extra people dying early from heart attacks because you're waiting for more data on beta blockers or statins. Be too permissive, and you can get Vioxx or DES or Thalidomide. And inevitably, some amount of political decisionmaking comes into play, as with the decisions surrounding RU-486 (aka the morning after pill), or H1-blockers (IIRC, moved to over-the-counter status largely because of pressure from insurance companies, who no longer wanted to have to pay for prescriptions).

#183 ::: abi ::: (view all by) ::: August 30, 2010, 02:58 PM:

Mattathias @175:

Oh, look, another all-embracing theory (that doesn't embrace all of the syndrome) with another miracle cure! Those come along every few years, get everyone's hopes up, suck up the grant money, reinforce the idea that we're all of us, even the mild Aspies, disabled enough to be in desperate need of medicating (or maybe just crazy), and then roll away like a hoop.

It's not the fault of the researchers that autism, Asperger's, and the whole damn spectrum are a bucket diagnosis, with Venn's own nightmare of a symptom profile. It's not their fault that mild Aspies like me wonder if that treatment would dampen the profound gifts the syndrome brings, while praisegod barebones may hope his son can benefit from it. It's not their fault that the popular press goes howling after remote cures rather than real-life hard-work accommodation.

These things are complicated. People are complicated. There is no clear answer to many of these disabilities, no matter how much you feel your particular instance is (a) clear-cut, and (b) representative.

and @ 173:

Why, exactly, are you arguing this, then? It's not to persuade, not the way you're going about it. To vent? I understand, as I said above, that it's frustrating, but you'd do better to be a little less aggressive to your fellow commenters, and a little less entitled to telling them what to do with their money and their hard-won accommodations.

Also, have you considered how accommodating disabilities now turns the disabled from people society must support to people who can work, pay taxes, and contribute to funding research?

#184 ::: abi ::: (view all by) ::: August 30, 2010, 03:02 PM:

And I see others have made all of my points before me, and better.

#185 ::: albatross ::: (view all by) ::: August 30, 2010, 03:13 PM:

Argggh--I keep thinking of more thoughts to add after I press "post." This is probably a sign that I should go do something work-related....

praisegod barebones' comment at #167 raises the chicken-and-egg problem of accomodations: Universities are almost impossible to get around in a wheelchair, so there are few students or professors in wheelchairs, so there's not much obvious need for ramps and such.

I've often suspected that this kind of historical stuff comes up a lot in what are considered requirements for some job. To use a simple example, if for some reason, most offices are on the top floor of buildings with no elevators, one of the requirements of the job is the ability to climb several flights of stairs every day. To use a less obvious example, if some job has traditionally been done by big men, then the equipment will often be designed with that assumption, whether that's an inherent requirement of the job or not. The job requires the ability to haul a 60 lb weight on your back while you run upstairs, because we designed the equipment back when only very large men were considered for the job. Now, maybe we'd like to allow women to do the job, or smaller men, but it may actually require a major redesign of equipment and procedures to do it.

Now, sometimes, these requirements are relevant to the job. (You'd like firemen to be able to carry a normal-sized adult out of a burning building, while also wearing their air tank and all their protective gear, for example.) But it's not always clear what's inherent in the job, and what's simply an artifact of the history of the job. It's worth noting that nurses have long had to deal with moving/lifting incapacitated people around, and despite being traditionally a female-dominated field, techniques for getting the job done arose that worked out okay. My impression is that nurses in the 50s, when almost all nurses were women and almost all doctors men, did not, in fact, call on the big strong male doctors to move the patients around in their beds or whatever. (But I could certainly be wrong.)

I don't know that this observation goes anywhere, except to remind us that sometimes what we think is fundamental to some job or role can be more about the history of the job than about what's actually required.

#186 ::: Serge ::: (view all by) ::: August 30, 2010, 03:15 PM:

albatross @ 181... Thanks for saying the above. When someone quotes the Law of Unintended Consequences, he/she really is putting on airs to hide that it's really about his/her being afraid of Change. Change can be bad in unpredictable ways, but it can also be good in unpredictable ways. I'll take Change.

#187 ::: abi ::: (view all by) ::: August 30, 2010, 03:16 PM:

albatross @185:
My impression is that nurses in the 50s, when almost all nurses were women and almost all doctors men, did not, in fact, call on the big strong male doctors to move the patients around in their beds or whatever. (But I could certainly be wrong.)

That's what orderlies did.

#188 ::: albatross ::: (view all by) ::: August 30, 2010, 03:21 PM:

Serge:

Yeah, the law of unintended consequences is omnidirectional. I suspect that in very optimized systems, it's usually negative if it has any effects at all--sort of like mutations in living organisms. But in messier systems, it's probably about as likely to make things better as worse. For example, ADA makes life easier for wheelchair users, but also for people with wheeled suitcases, or pushing strollers. And once you have wheelchair-accessible buildings and surroundings, many people who don't absolutely need a wheelchair to get around, but who would benefit from some kind of help, can use them. The lady with bad arthritis in her knees for whom a long walk is painful but do-able can now take a cart or scooter or something, but only if such are available and there's a path for the scooter to get around.

#189 ::: Mattathias ::: (view all by) ::: August 30, 2010, 03:21 PM:

albatross@181: The problem I have with all that public-works accommodation is that when it gets presented as a consequence of ADA, as opposed to investment in the long-term productivity of the entire workforce, people like me get called out as being the cause of expense. People like me, who bring to the workforce some initial expenses that the able-bodied do not, are already at a disadvantage in competing for available jobs. The ADA isn't helping me get work, and it isn't helping me keep work once I've got it. The ADA is actually encouraging smaller employers to remain below certain employee counts specifically so they don't have to comply with certain provisions, which those employers do by retaining contractors whenever possible. Incidentally, companies don't provide health benefits to those contractors. I'd be better off in finding work if those companies took in their contractors as employees; there would be more positions which have health insurance available, and somewhat larger companies have more clout with the health insurers when they do take on people who actually need to use the insurance.

There is much perversity in our current health provisioning system in the US, and I'd like nothing better than to upend the entire system on its ear. The ADA doesn't do that, though, and neither did the health care reform actually passed into law by Congress.

#190 ::: P J Evans ::: (view all by) ::: August 30, 2010, 03:38 PM:

182
DES is different from Vioxx and thalidomide in one way: it takes years for the effects to show up in people and be recognized as such. (Also, I think it was most widely used before testing programs were really required. Certainly it wasn't widely known to be a problem until the 70s.)

#191 ::: Ginger ::: (view all by) ::: August 30, 2010, 03:59 PM:

The Vioxx study showed a long-term complication that occurred, although Merck scientists didn't help their cause by overlooking data (either deliberately or inadvertently). Rofecoxib, if used for 18 months or fewer, had no difference from placebo in terms of cardiovascular adverse events and was considered to be superior to other COX-2 inhibitors based on several outcomes, including the GI (that is, it was considered to be less aversive to the patient taking this medication as it didn't bother the stomach as much as other NSAIDs do).

presented as a consequence of ADA, as opposed to investment in the long-term productivity of the entire workforce,

The point I see people making here is, without ADA there would be no investment in the longterm productivity of the workforce. There would be no impetus to hiring disabled people just because employers would be able to discriminate against hiring us in the first place! A diverse workforce depends strongly on ADA and businesses being compliant with the law.

#192 ::: albatross ::: (view all by) ::: August 30, 2010, 04:19 PM:

As an aside, there's an interesting question here about how much the law in the case of ADA is being used as a way to require stuff to be done, and how much it's being used as a way to establish what the standard thing is that ought to be done. In a world full of satisficing[1] instead of optimizing actors, a lot of stuff that's secondary to your main job, like architecture of your buildings, is just something on which you mostly accept the defaults of your society. Changing the law changes the defaults. It's a blunt instrument to do so in a lot of ways, and there's a lot of opportunity to mess things up or even wreck lives and communities with that instrument[2], but I suspect it's an important part of the impact of the ADA. It's very common in my circle of friends to notice and comment on stuff that makes no sense from the perspective of even mild disabilities--the fire alarm whose sound is too high-pitched for my boss (hearing damage courtesy of the United States Army) to hear, the ADA-mandated ramps for sidewalks in our church's parking lot which create several non-connected wheelchair-accessible segments of sidewalk, etc. To a large extent, that's the result of ADA-mandated changes in architecture leading us to expect buildings and parking lots and such to be designed to work for a wider range of people.

[1] That is, you twiddle with the system till it works, then mostly leave it alone, rather than systematically trying to wring the best possible performance out of it. Think "old-time family hardware store inventory system" vs "Wal-Mart inventory system."

[2] See the Drug War for a great many examples.

#193 ::: Mattathias ::: (view all by) ::: August 30, 2010, 04:27 PM:

A diverse and long-term workforce in the US may depend on law mandating ramps, wide doorways, hallways, and bathrooms, lever-style door handles, and other measures, but no deity requires that law be written to specifically call out the disabled as the cause for the law's existence. As I've said above, I can do without the scapegoating.

#194 ::: OtterB ::: (view all by) ::: August 30, 2010, 04:53 PM:

praisegod barebones @147 the recognition that they have lives worth living and that they should be helped to live those lives, rather than confined to institutions form a very young age

Late to this discussion, and sidestepping the more contentious parts of it. But I wanted to say yes, this. US-based here, so perhaps a different experience than yours. But my parents felt they had no choice than to put my brother, now age 54, with (as far as we understand it) brain damage from a difficult birth, in a residential school from age 2 to 18. The public schools offered no accommodations. His care was difficult, I was only 14 months younger, and my mom had health issues of her own. It was, as far as I can tell, a good place. But it wasn't home.

My daughter, now 16, has cognitive disabilites, some minor physical issues, and very little speech (though she uses a computerized speech generation device). There was never any question that she would live at home and attend public schools. It has become clear that she will not be able to earn a regular high school diploma, but I still think it likely she will be able to be gainfully employed.

Things changed. Things are better.

wrt the original discussion about bending the arc - just how does one go about doing that? Trying to argue this in online venues seems futile. Honestly, my community is, as far as I know, very inclusive and my legislators seem for the most part to be sensible folk. I'm not sure where to throw my weight in trying to bend things.

#195 ::: Mark ::: (view all by) ::: August 30, 2010, 05:32 PM:

Mattathias, so does your #193 mean that your objection to ADA compliance standards would be abrogated simply by absorbing those standards into pre-existing building safety codes, rather than codifying them in a separate statute? Are we arguing, in short, a question of public perception rather than practicality?

#196 ::: Lee ::: (view all by) ::: August 30, 2010, 05:50 PM:

Mattathias, #173: I don't give a rat's ass whether I change your opinion or not. You, however, might do well to consider that others are likely to be much more sympathetic to your situation if you stop couching your arguments in terms that sound like, "Throw everyone else under the bus -- I want MY cure, and I want it NOW, and the hell with anyone who isn't me." And saying "I'm unused to using tact and courtesy" doesn't help your case either.

[paragraph redacted]

#197 ::: Mattathias ::: (view all by) ::: August 30, 2010, 06:16 PM:

Mark@195: That would help considerably.

Another item that would help considerably would be modification to health care acquisition such that companies don't have incentive to fire/refuse to hire workers who actually use the health insurance, without just pushing full cost of health provision onto each individual (i.e. tending toward the European model rather than simply abolishing group health insurance altogether).

#198 ::: Bill Stewart ::: (view all by) ::: August 30, 2010, 06:29 PM:

One thing that frustrates me about the housing construction boom that happened during the Clinton and Bush year is that most of the houses built don't appear to be wheelchair-accessible. It's not just wheelchair ramps for the front door or easy fixes like handrails in the bathroom, it's doors that aren't wide enough for chairs and steps in inconvenient places (though at least the 1970s sunken livingroom has mostly vanished.) It wouldn't have been that hard to upgrade a large fraction of the nation's housing stock to at least reasonable accommodation, if not full ADA compliance. About the only major change that seems to have happened is that houses have more bathrooms, so if you're on the ground floor there'll be a full bath and not just a half-bath.

This isn't a rant about political correctness or about accommodating those poor unfortunate handicapped people, it's a rant about the fact that most of us are going to get old, and those members of the boomer generation who vowed to die before they got old have either done so or wised up, and we're going to need houses or apartments that we can get around in. It's not like it should be a surprise - my grandparents moved into a house in 1948, when they were about 50, which was on a hill so Grandma could scarcely get up the front steps when she was 70 and using canes, much less a couple of years later when she was usually in a wheelchair. (So of course I'm living in a second-floor walkup myself.)

"Temporarily abled" may be a bit of a harsh phrase, but certainly "currently abled" is realistic. I've occasionally been not-currently abled, due to broken bones or surgery or whatever, and a lot of places are tough to get around even if you're in good shape and just on crutches, and worse if you're also feeble, or have tight corners that you can't get a scooter around.

#199 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 30, 2010, 06:43 PM:

Mattathias @ 193:
As I've said above, I can do without the scapegoating.

See my comment at 84. Scapegoating is just another technique used to shut up oppressed groups, so that the oppressors can deny the oppression. Insisting on not doing anything to cause yourself to be scapegoated is another way of going along with the oppression. Your argument is logically equivalent to the Uncle Tom who tells a civil rights activist to stop rocking the boat because he will bring trouble down on the Uncle Tom from the white power structure. And that's why I find your arguments offensive, because they're all about you wanting everyone else to stop rocking your boat, no matter reasons others may have to do what they're doing.

#200 ::: John A Arkansawyer ::: (view all by) ::: August 30, 2010, 06:45 PM:

OtterB @ 194: Even without knowing your zip code, I am willing to bet there's some form of injustice within your political reach*. Tell me that**, and what you care about, and I or someone else here can can almost certainly give you a suggestion or two.

I know that sounds vague, but so often evil is in the small details of everyday life, and I'm thinking you don't sound like you'd be satisfied writing a check and sending it off. Even during treacherous times like this, there are things to do.

*"grasp" is better denotationally, but connotationally it sounds like an insult, which I do not intend.

**if there wasn't a rhetorical imperative before, there is now.

#201 ::: Mark ::: (view all by) ::: August 30, 2010, 06:59 PM:

Mattathias @ 197, I believe I am coming around to understanding the point that underlies your argument, and there is some validity to it. Your very understandable anger and resentment of the system and how it plays out have gotten in the way of that point, however, and led us on to some rather unproductive head-butting.

Let me see if I can recap the essence of your position without insulting oversimplification - and also without rancor.

The problem with accommodation of disability is that the public perception of such accommodation has been a little like a third grade teacher giving the anti-bullying speech in class that references the bullying victim by name. Because much is made publicly of identifying the people the accommodation is meant to benefit (or avoid harming), the people who have to pay (whether in money, effort or opportunity) come to resent those accommodated. This is true whether the accommodation is physical, as in building codes, or systemic, as in the perverse financial incentives of private health insurance.

I submit, and it seems like you would agree, that the solution is not to eliminate accommodations - neither physical nor systemic - but to take the more subtle and difficult approach of socially engineering the accommodations so that they're invisible in the landscape. Make ADA compliance part of building codes ab initio. Build safety parameters around the assumption that disability is a normal state rather than a special case. Consign for-profit health insurance to the scrap bin of history where it belongs and construct a program that places the incentives on quality of care.

The problem, the great labor that we've been calling bending the arc of history toward justice, is finding our way toward that kind of world, starting from the one we've got.

#202 ::: Mattathias ::: (view all by) ::: August 30, 2010, 07:06 PM:

Bruce@199: [original comment redacted; too inflammatory]

I appreciate your stance. However, as the primary income for my household, I am not always in a position to be as principled as I'd like to be with regard to employment accommodations. There are others in the picture who would be harmed considerably were I to become unemployable in some quest to be the poster child for ADA.

#203 ::: Joel Polowin ::: (view all by) ::: August 30, 2010, 07:08 PM:

Back when I was at university, I was looking for a roommate to share my house, so I went to the student housing office to add my place to their shared-accommodation listing. In the "handicapped accessible [Y/N]" box, I was told that I wasn't allowed to put "N", because that would be discriminatory. "But... the house has front steps. The bedrooms are upstairs," I said. But the best that I was allowed to do was to leave the item blank. <*sigh*>

#204 ::: John A Arkansawyer ::: (view all by) ::: August 30, 2010, 07:14 PM:

Bruce @ 199: In an act of pretty good timing, I'm just now reading* Sally Belfrage's Freedom Summer. There's no scapegoating of those who declined to be scapegoats in it. They were just people too oppressed to fight oppression.

*because I wanted to see if I'd recommend it to young people looking to be activists. I'm almost done, and the answer is, "Yes!" along with For The Win, the wikipedia page on Mario Savio, and a recent lecture on living with the prophetic voice.

#205 ::: David Harmon ::: (view all by) ::: August 30, 2010, 07:15 PM:

Joel Polowin #203: Classic case of "solving the wrong problem".

Come to think of it, so is Mattathias, in a different way....

#206 ::: John A Arkansawyer ::: (view all by) ::: August 30, 2010, 07:20 PM:

Me @ 204: Johnnie, you dolt! It was a sermon, not a lecture, and it's slightly hard to use the google to find. You should give people the link!

#207 ::: Mattathias ::: (view all by) ::: August 30, 2010, 07:34 PM:

Mr. Harmon@205: Just because I am not solving your problem, that does not mean per se that I am solving the wrong problem.

#208 ::: joann ::: (view all by) ::: August 30, 2010, 07:56 PM:

Bill Stewart #198:

FWIW, we built a new house a couple of years back. The whole development (and possibly the whole city now) is subject to "visitability" requirements, which means a lot of ADA things, but only on the first floor. (Since nobody can afford elevators, the upstairs is assumed to be exempt.) Although we have many front steps, the garage is at grade level, and there is a ramp to negotiate the 6" difference between there and the main part of the house (serious drainage slope between front and back of the lot). Doors are a bit wider than normal downstairs, all door handles throughout the house are levers, light switches are lower, thermostats are lower (too low, in my opinion, what with the possibility for creative reprogramming on the part of children), and outlets are higher. The downstairs toilet has a lever flush, despite the home's green rating that should imply a toilet matching the super low-flow ones upstairs that have two buttons each.

OTOH, there is no accommodation as to counter height, or to cabinet height (alas for us shorter types).

Having these things on the first floor means that if one of us ever became confined to a wheelchair, we would be able to move to the downstairs bedroom (now the library) and continue to live in our house with few if any absolutely gotta-have changes. The one problem I see would be that the chair-bound person would probably have to stop cooking.

#209 ::: Bombie ::: (view all by) ::: August 30, 2010, 08:00 PM:

Mark @201

Thank you for trying to keep this conversation productive. I very much approve of your style.

Incidentally, I also agree with what you said.

#210 ::: Ginger ::: (view all by) ::: August 30, 2010, 08:54 PM:

Mark @201: Well said.

#211 ::: David Harmon ::: (view all by) ::: August 30, 2010, 09:00 PM:

Mattathias #207: The thing is, you're not just "keeping your head down" on your own account, you're actively arguing against accommodations for everyone. Firstly, that puts you directly at odds with the folks whom you could be making common cause with (as evidenced by the reception here for your position).

Secondly, yours is a denial-type response, and denial doesn't work long-term. You figure you're "getting by" (or perhaps "passing"), so it's safer for you to side with your employers against other disabled folks. But in the world you're working toward, your employer won't return that loyalty when you can't "get by" anymore, which is all too likely to happen eventually. (See above discussion of "currently abled" -- that applies quantitatively as well as qualitatively.) At that point, your best hope is that your current position has lost, and there are more accommodations available "against your will".

I'll also add that you seem to be subtly assuming that your current employer is the only possible employer; that anything short of your desperate assurance that "you don't need any help, and neither does anyone else" would make you "unemployable". I assure you, there's a long way between quietly tolerating an employer's shortcomings, and "becoming a poster child for the ADA". You don't also need to insist that accommodation to disability is misguided in general.

#212 ::: Mark ::: (view all by) ::: August 30, 2010, 09:01 PM:

Mattathias, if I've gone wrong in restating your position at #201, please set me straight. I get the nagging feeling there's something important being misunderstood in the rancor this debate has stirred up.

#213 ::: Mattathias ::: (view all by) ::: August 30, 2010, 09:09 PM:

Mark@212: Your position in 201 is as accurate a representation of my primary motivator as may be succinctly stated. Thanks for finding a statement free of the charged emotion I brought to the discussion.

Meatspace calls.

#214 ::: Marilee ::: (view all by) ::: August 30, 2010, 09:33 PM:

jnh, #172, Yes, mandates are one-size-fits-all, which can create some odd responses: the Appalachian Mountain Club puts wheelchair accessible outhouses on mountains that aren't even approachable by chair (it's easier than getting a waiver). It has the side affect of making the restroom into a usable refuge if sudden bad weather appears or if someone is injured.

But a lot of "accessible" places are good for people who don't use wheelchairs. I have trouble standing up from toilets that aren't in my condo, and more room and a grab bar help. There are guys with prosthetic legs who have gone up Mt. Kilimanjaro and while there's no restrooms up there, if they were climbing the Applachians, they might need an accessible restroom.

albatross, #192, the ADA-mandated ramps for sidewalks in our church's parking lot which create several non-connected wheelchair-accessible segments of sidewalk,

The ADA mandates curb-cuts for sidewalks, and those don't create non-connected segments of sidewalk. I use a lot of curb-cuts.

#215 ::: Paula Helm Murray ::: (view all by) ::: August 30, 2010, 09:50 PM:

Joann, I imagine there is a place or two in your kitchen where a row of countertop could be made shorter. I can think of a couple of places in mine.

And our house is totally stoopid if ADA is a standard, it was built in 1912, there are no ramps to get to the porch. Granted, we think the parlor was used for someone who was house-bound, the bathroom on the first floor bathroom has the holes for bars and grips though they removed those at some point, either their living there or before the sale before our purchase.

#216 ::: KayTei ::: (view all by) ::: August 30, 2010, 10:04 PM:

Didn't want to add to an already-lengthy analysis, but I note with some minor frustration (directed primarily at the government and its puppetmasters) that the primary motivating factor for small employers to discriminate against employees on the basis of health insurance premiums would be eliminated (theoretically, at least) if they'd just require that all employers below a certain threshhold (ask an actuary what that should be) be pooled into a "small employer pool" administered by each health plan on a per-state basis.

Or, if they'd just gone with Medicare for all.

#217 ::: shadowsong ::: (view all by) ::: August 30, 2010, 10:08 PM:

Mattathias @193:
So, it's not necessarily that you're opposed to accommodation measures - it's that you're opposed to justifying those measures in a way that leaves you vulnerable to assholes? I think I can understand where you're coming from, but I suspect that most people affected by this would prefer dealing with assholes while they go about their lives, to not being able to go about their lives.

#218 ::: Cally Soukup ::: (view all by) ::: August 30, 2010, 10:12 PM:

Wheelchair accessible port-a-potties are also useful for parents of small children who still need help in the bathroom, and for unusually large or clumsy people. I know that I'll be strongly suggesting that next years week-long rocket meet in Cincinnati rents at least one such port-a-potty along with the regular ones. Especially since the rocket field looks like it will be unusually accessible.

#219 ::: shadowsong ::: (view all by) ::: August 30, 2010, 10:13 PM:

Erk. Sorry, forgot to refresh before composing.

#220 ::: albatross ::: (view all by) ::: August 30, 2010, 11:15 PM:

Marilee,

I got the terminology wrong, but not the geometry. My church's very recently redone parking lot has a couple iterations of curb cuts on one side of a sidewalk, but not on the other--thus, if you're trying to push a stroller on that sidewalk, you come to a curb with no way down but to roll off the edge.

This is a pattern I've seen many other times--curb cuts in places where they're not useful, no curb cuts where they would be helpful. (Though I'm approaching this from the perspective of someone pushing a stroller--I'm sure I'm missing a lot.) In some sense, it's a great example of someone following the letter of the law while ignoring the spirit. It can't really be intentional, I don't think, since it's hard to see how anyone saves money doing a lousy job of placing the curb cuts and ramps and such. But it sure seems common.

#221 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 31, 2010, 12:35 AM:

John A Arkansawyer @ 204:

Sorry, it's late and I'm running on minus sleep; I'm having trouble unpacking your comment. Could you explicate, please?

Mattathias @ 202:

Thanks for the measured reply. I did not intend my comment as a flame; I really was offended by your comment about scapegoats, and I wanted you to understand why, but not so as to exchange insults or name-calling. I hoped that you would appreciate the position that others on this thread are coming from.

#222 ::: Mattathias ::: (view all by) ::: August 31, 2010, 12:55 AM:

So that all pretty well covers my primary motivators. Thanks primarily to Mark for working out a way of putting it that isn't offensive on its face.

My secondary motivator is that by and large, medical companies are not interested in curing chronic disorders. At least in the US, a patient with a chronic condition, who can be helped but not cured, is a profit center for a pharmaceutical company. The government-funded medical research lotto mentioned upthread is necessary primarily because the medical companies that have buckets of cash at their disposal (primarily pharmas) make far less money by curing a patient once than they do by dosing the same patient 3,650 times over the course of ten years, then doing it again with their next patent-protected drug that does much the same thing. (Patents are 20 years, but it takes the first ten to get through research and FDA trials.) Pharmas, like all corps, are accountable to their shareholders and no one else, and have a fiduciary duty to maximize their shareholders' returns; but they have no moral duty to act in the best interests of society. So, by and large, they don't.

Some upending of established priorities seems to be in order, so that research towards cures can be pursued in par with other areas of medical import, rather than getting the short end of the funding stick for being a comparatively unprofitable endeavor.

#223 ::: TexAnne ::: (view all by) ::: August 31, 2010, 12:59 AM:

Again, Mattathias, I have to disagree. I'm asthmatic, and even in the brief time since I was diagnosed, there have been advances. I doubt I'll ever be cured, but the day-to-day management has continued to improve. If it's ever possible to get by with one pill per day, I'll take it gladly, because it's far better than being dead.

#224 ::: Mattathias ::: (view all by) ::: August 31, 2010, 01:17 AM:

I've been working for medical device companies for several years now. Before that, I was in financial investment companies, and I still keep a hand in finance. I'm bringing domain-specific knowledge to the discussion, not just popular press speculation.

Yes, there are advances -- mostly towards better mitigations, not cures. In the corporate long view, mitigations are far more profitable.

#225 ::: Dave Bell ::: (view all by) ::: August 31, 2010, 02:35 AM:

Mattathias @222

I don't think what those companies do has any connection to requiring such things as doorways of wheelchair-friendly width.

Take it from me. A broken leg can be cured. But it takes time.

#226 ::: jnh ::: (view all by) ::: August 31, 2010, 08:02 AM:

Marilee @214:
My sister, who used crutches for almost 50 years, has been known to climb mountains, so I understand the issue. Backcountry outhouses have been generally designed to accommodate winter hikers with gear (mountaineering boots, large backpack with the skis for the downhill trip strapped on, etc.) so most of the accessibility issues were already accommodated. But the trail crew is allowed to bitch a bit about having to backpack the wood for a wheelchair ramp uphill for three hours when there won't be space for a wheelchair to access the ramp, and the trail to get there is 18" wide at best and a scramble to boot [PI].

#227 ::: John A Arkansawyer ::: (view all by) ::: August 31, 2010, 08:10 AM:

Bruce Cohen (Speaker to Managers) @ 221:

That was dense, wasn't it? Let me try to unpack it.

In Sally Belfrage's account of Freedom Summer, there are throughout it two sorts of black who don't work with the movement: outright Toms and people who are just too scared or beaten down.

The sellouts come in for a lot of derision. Those who are just unable, for whatever reason, get very little. Blaming those who has the weight of oppression on them for not rising up is a bit like blaming the victim.

Now, which of those Matthias' strategy represents is, I guess, a matter of opinion. It sounds to me, from his description, that he's got a relatively vulnerable situation. He's talking pretty good sense, even if he hasn't always expressed it well, and I have to assume he's made a reasonable evaluation of his situation. If his judgement is that the price of principled action is more than he and his family can bear, I'm not going to say he's wrong. He has multiple competing responsibilities to sort out.

One point of group action is that no individual bears the burden alone. But group action also assumes that (other than people who take on leadership) risk is well-distributed among a mass of people. Matthias doesn't get that advantage in this situation.

Does that help?

#228 ::: Mark ::: (view all by) ::: August 31, 2010, 08:27 AM:

Mattathias @ 222, what you're referring to as secondary motivators here seems to me to be part and parcel of the primary motivators - the perverse incentives of a for-profit health care delivery system. I'm not sure what a health care system that rewarded outcomes rather than processes would fairly look like, but I seem to recall last summer's talk of improving Medicare's performance seemed to be reaching in that direction before the irrational screaming drowned all sense.

#229 ::: OtterB ::: (view all by) ::: August 31, 2010, 08:54 AM:

Re the provision of accommodations without scapegoating:

1. Underlying principle: People should be able to be as independent as possible, and those possibilities should not be limited by artificial constraints.

2. The removal of artificial constraints should not entail blaming the victim, and in particular should not entail blaming the victim for poorly-thought-out requirements that don't even solve the problem.

3. It takes a shift in perspective for society to take "universal design" principles for granted. But when those universal design principles are used, lots of people benefit, not just those poor unfortunate whiny cripples (/sarcasm) See, for example, the short piece on universal design from the National Association of Home Builders

4. This applies to more than physical access standards. To take a couple of areas I know something about, programs that are designed to make computer science classes more welcoming to women often improve the performance of the men in the class as well. Classroom techniques intended to help students with learning disabilities (e.g. presenting material in both written and auditory form) often help other students as well. Thinking inclusively benefits us all.

5. The shift in perspective takes time. You have to start with awareness. Crossing threads, it's like the person who takes the serving spoon out of the pork chops to serve the vegetarian lasagna. It can be malicious or willful blindness, but doesn't have to be. Our perceptual systems are designed to let us sort out the things we need to think about from the things we don't need to think about, because if you have to think about every single thing all the time, you'll never move. It's as normal to not notice as it is to notice. So first, the majority just doesn't see the problem. Second, the solution seems like more trouble than it's worth. It's change, and who knows what the scary unintended consequences might be. Third, it gets done by some combination of leaders pulling and legal requirements pushing. And finally, it becomes the new normal.

This is the point abi made in the original post. It took time to shift the attitude that women were inferior. It took time to shift the attitude that persons of color were inferior (and we're not completely there yet). Similar shifts are in progress with respect to sexual orientation or disability status. It takes time, and it takes continued pushing. But it can happen.

#230 ::: abi ::: (view all by) ::: August 31, 2010, 02:12 PM:

OtterB @229:
So first, the majority just doesn't see the problem. Second, the solution seems like more trouble than it's worth. It's *change*, and who knows what the scary unintended consequences might be. Third, it gets done by some combination of leaders pulling and legal requirements pushing. And finally, it becomes the new normal.

“First they ignore you, then they laugh at you, then they fight you, then you win.”
—Mohandas K Gandhi

#231 ::: Lee ::: (view all by) ::: August 31, 2010, 04:03 PM:

John, #227: "Not working with the movement" is not at all the same thing as "telling other people that THEY shouldn't work with the movement". The first is a personal decision, which could be made for any number of reasons. The second is... well, it's the flip side of shaming someone who chooses not to work with the movement, and no more acceptable.

#232 ::: Bruce Cohen (Speaker to Managers) ::: (view all by) ::: August 31, 2010, 05:02 PM:

Lee @ 231:

That is exactly what I was trying to say to Mattathias in #199. Thanks for putting it so clearly.

#233 ::: dcb ::: (view all by) ::: August 31, 2010, 05:30 PM:

albatross @ 185: Re. female nurses and large patients:

(a) if I recall some of mother's stories correctly, she, when a junior doctor, did have to assist in moving patients (and she's five foot nothing).
(b) the law of unexpected consequences occasionally works for good. When the Navy (UK? US?) finally accepted that women should be allowed on ocean-going ships, the rate of back injuries, in the male sailors went down*. Why? The men lifted and loaded torpedoes alone - it wasn't macho to say this was difficult and work in pairs. The women found the torpedoes too heavy, so they paired up and got the job done (two people working together on 2X torpedoes, rather than each of two people working alone on X torpedoes) in the same length of time. This became the normal way of doing things for the men as well. Result: fewer acute/chronic back injuries.

* I remember reading about this, but cannot, at this time, find references.

#234 ::: Mattathias ::: (view all by) ::: August 31, 2010, 05:48 PM:

Lee&Bruce@231&232: It is sometimes productive to expose oneself to speech that one expects to find offensive. There are points of view other than your own, some of which have merit; but you will not find such merit unless you seek it. Likewise, it is sometimes necessary to advocate an unpopular point of view, so that its merits may become more widely known.

I have preached an unpopular point of view here the last few days, and have been judged for my efforts. I am nonetheless hopeful that you have found some merit in the alien view.

#235 ::: Mark ::: (view all by) ::: August 31, 2010, 06:14 PM:

Mattathias, I no longer believe you were preaching an unpopular point of view. Now that we've worked together to unpack what you were saying and the meaning behind it, I think you were making a valid point ineffectively. It's just unfortunate that, in my view at least, the circumstances that made your argument ineffective backed you into a corner where you ended up disputing other people's valid points.

Today's Talk of the Nation on NPR was encouraging, by the way. There was a discussion of senior citizens' efforts to retain their independence, which included strong lobbying for visitability standards in building codes for new construction and various other accommodations we've touched upon here. If the AARP is coming on strongly to make these kinds of societal changes universal, that will help ease the social pressure that comes out now as scapegoating the disabled.

#236 ::: John A Arkansawyer ::: (view all by) ::: August 31, 2010, 08:28 PM:

Lee @ 231, Bruce @ 232: And there, perhaps, the analogy breaks down, or maybe doesn't. During the Freedom Summer events in Greenwood, another group arose beside the existing ones, the Peacemakers, who were not committed to non-violence. That is, to me, a closer analogy to Matthias' position--differing tactics leading to similar goals. The Freedom Summer workers and the Peacemakers found ways of working together despite their very real differences. I think that's an admirable example.

#237 ::: Marilee ::: (view all by) ::: August 31, 2010, 08:35 PM:

albatross, #220, I would have guessed a church would have a better plan for that. I see some places, mostly shopping centers, that have curb-cuts in very inconvenient places even for people with wheelchairs. When a county/city/city gym & pool was put in some years ago, we disabled folk had to talk to them about the curb-cuts. They were in legal spots, but we had to walk much further than we would if they moved the curb-cuts to another place. They moved them when the facilities director came out and watched us.

Mattathias, #222, I take 19 and 20 meds alternate days and only two of them are brand names. The rest are generics and the pharmaceuticals aren't making much money on them.

Mattathias, #224, better mitigation can be much more like a cure. When I first had lung damage, I had to use a nebulizer every three or four hours around the clock -- the albuteral came in glass ampoules and I had to snap the tips off. Now I use two inhalers twice a day. This is not only a lot cheaper, it's a lot easier. (I do still have the nebulizer and get meds from my doctor every year (no more glass ampoules) in case there's an emergency.)

#238 ::: John A Arkansawyer ::: (view all by) ::: August 31, 2010, 08:46 PM:

abi @ 230: True, but Gandhi didn't explicitly mention that, between the part where you get laughed at and the part where you win, at best only a few of you get killed--one way in which, good as Little Brother was, I think For The Win is better.

#239 ::: praisegod barebones ::: (view all by) ::: September 01, 2010, 01:25 AM:

Matathias 237

I've now considered your views at length, over a period of several days and am utterly unpersuaded of their merits. I'm very much with Bruce Cohen and Lee at 231 here.

But I do want to say this. As far as I'm concerned, you've been offensive in ways that go beyond what you take to be the unpopularity of your view. I explained why at 147, which you seem to have ignored. Fair enough - it was a long post, and you had a lot to reply to. But in your eagerness to win the argument for the advocates of exclusion, you also ignored Bombie's 178, which was, i think, a pretty clear indication of how things stood.

So - this has nothing to do with whether - as you put it at 173 - you are blunt or tangential with your statements. It has to do with whether you are prepared to listen, think about, and engage with the views of people with experiences that differ from yours with the same degree of time and patience that they have been prepared to engage with yours. (And to anticipate a possible rejoinder: time spent at the keyboard may not be a particularly good measure of this)

Please don't flatter yourself that the anger you've encountered here is simply your due as a courageous speaker of unpopular truths. There's nothing unpopular, or brave about the views you are advocating for. There's nothing courageous about advocating for the further exclusion and disempowerment of those who are already excluded and disempowered; and I, at least, am utterly unimpressed by your continuing to do so.

#240 ::: Lee ::: (view all by) ::: September 01, 2010, 02:53 AM:

And so finally we do get to the "brave stance" and "echo chamber" tropes. I am sorry to have been proven right.

Mattathias, do yourself a very large favor: read your first paragraph aloud to yourself while looking into a mirror, and then take your own advice.

#241 ::: abi ::: (view all by) ::: September 01, 2010, 03:53 AM:

Mattathias:

I am disappointed that you've lapsed into the notion that it was your challenging ideas rather than your aggressive, entitled approach and failure to brook disagreement that determined your reception. It's a trollish trope, and there were plenty of people throughout the conversation who tried to clue you in. But you were so busy talking that you weren't listening.

So as a result you've put more people off of your more reasonable points (scapegoating of the disabled). Not just trollish (though I don't think you are even a part-time troll), but ineffective.

Do better.

#242 ::: praisegod barebones ::: (view all by) ::: September 01, 2010, 05:55 AM:

Lee @ 166. I owe you an apology. This snark was, indeed, a boojum (or at least, boojum-ish).

Otter B @ 194. Things changed. Things are better.

As I said before, One of the frustating things about the direction this conversation has gone is the way this point got lost.

Especially as you then went on to ask

wrt the original discussion about bending the arc - just how does one go about doing that? I'm not sure where to throw my weight in trying to bend things.

to which I'd have liked to say two things. The first is that, given what you've said in this post about your life and your daughter, it strikes me that you've almost certainly done small things to bend the arc on an almost daily basis, and without noticing it.

(Here's an example. That book you recommended to Jacque over on the Open Thread? Just what my wife and I need, and have been looking for; and weouldn't have thought to ask about. It will, I'm sure, help us in helping our son to get what he needs from the local schools and support services.)

Second: I think that in dark times, it might be good to look at the history of how we got from there to here. With respect to disability, I don't think we know that history well enough. Or at least, I don't. )For the people who have lived that history maybe it's a different matter. I imagine ıt to have been a mıxture of activism, legislation, and people managing to do what is right in their daily lives, and sticking to it at times when they might not have done. And even when the big steps that can be made through activism ad legislation can't be made (and even i will admit they never come without some costs), the small ones can be.

#243 ::: praisegod barebones ::: (view all by) ::: September 01, 2010, 06:11 AM:

ddb @ 168: like TexAnne, I'm grateful for you putting so clearly a point that I think many of us agree with, but no-one managed to articulate quite as well as you did.

Still, the observation that research on mitigation, research on cure, research on prevention, and building accommodations are in some degree competing uses of resources is something we shouldn't forget.

That's true. (though with the subtle caveat that albatross 181 and othersa have made about the ways in which investing in infra-structure can lead to gains in productivity)

But of course, they're not just in competition with one another; they are also in competition with tax cuts for the rich; money to pay for the up-keep of nuclear weapons; and funds for repairing bridges in Minnesota.

I think it's very easy to think there's a fixed pot of money available for 'helping the disabled'. Looking at things the way albatross did at 165 encourages people to think that way; (and that leads to the idea that the compelling question is 'how much money should we spend on accommodation, if we want to have the best chance of finding a cure.')

I think that that question looks less compelling if you don't start from the 'fixed pot' assumption. Not only is the size of the pot not fixed (for the reasons that albatross gave; but also because the size of the pot depends on what else you've decided to spend your money on); but it's a mistake to think that the question to ask is 'how much money can we afford to spend on helping the disabled) and not 'how much money can we afford to spend on making sure that everyone (or, if you insist that not everyone can, then as many people as possible; but that's not a concession i'm giving away for free)can be a full member of this society.

#244 ::: John A Arkansawyer ::: (view all by) ::: September 01, 2010, 08:00 AM:

Judgments by the local rules of rhetoric don't work so well for me when the person being judged is speaking about their personal situation and what to do for it. I don't care to debate it--this thread already has more than enough metacontent.

#245 ::: praisegod barebones ::: (view all by) ::: September 01, 2010, 09:05 AM:

John Arkansawyer 244

Since you don't care to debate it, I take it that it's ok to assume that you're prepared to extend that fine and generous attitude to the rules of politeness usually observed around here to individuals in this thread who are not wage-earning American males. Because there are quite a lot of people involved in this thread whose personal situations are involved in this discussion. (See for example Marilee 100; I leave it as an exercise for you to count how many others)

Just to make something clear: keeping it a secret from your employer that you're disabled, because your afraid of being scapegoated: fine, no problem. Your life, your judgment.

Criticising ways in which a society goes about managing accommodation: again, fine, no problem: your political system, your right of free speech.

Advocating solutions to this problem that would further marginalise the already marginalised: please show that you are at least prepared to listen to the views of people whose lives would be impacted in a bad way if these solutions were implemented; and don't be surprised when they persistently remind you that you haven't done so.

Telling such people that they shoudl really shut up because someomne else's actual situation is involved ...well, I'll leave it to you to answer.

#246 ::: OtterB ::: (view all by) ::: September 01, 2010, 09:09 AM:

praisegod barebones @242 it strikes me that you've almost certainly done small things to bend the arc on an almost daily basis, and without noticing it. ... That book you recommended to Jacque over on the Open Thread? Just what my wife and I need

Thank you for this. Passing on information is one of the things I think I do well, and - as I've been doing some reflecting recently - is in some ways a calling for me. (And doesn't that feel pretentious to say. Yes, I am on a special mission from God, thank you for asking.)

I've also been thinking about John A. Arkansawyer @200 asking what I care about (and therefore where I could be working to bend the arc). I feel like the thing that is most needed - more rational and civil public discourse - is beyond my capacity to affect. I also feel like the little things I can do, day to day, don't matter much. But perhaps I underestimate the impact of just trying to live my life in the way I think people should be interacting.

I am, thank goodness, not Miles Vorkosigan. But I'm reminded of this scene from The Mountains of Mourning, by Lois McMaster Bujold (available from Baen Free library if anyone hasn't read it - and I highly, highly recommend it - but what follows is a spoiler).

"I didn't know what to expect of you, at first," admitted Karal.

Miles shook his head. "I meant to make changes. A difference. Now... I don't know."

Speaker Karal's balding forehead wrinkled. "But we are changing."

"Not enough. Not fast enough."

"You're young yet, that's why you don't see how much, how fast. Look at the difference between Harra and her mother. God — look at the difference between Ma Mattulich and her mother. There was a harridan." Speaker Karal shuddered. "I remember her, all right. And yet, she was not so unusual, in her day. So far from having to make change, I don't think you could stop it if you tried. The minute we finally get a powersat receptor up here, and get on the com net, the past will be done and over. As soon as the kids see the future — their future — they'll be mad after it. They're already lost to the old ones like Ma Mattulich. The old ones know it, too, don't believe they don't know it. Why d'you think we haven't been able to get at least a small unit up here yet? Not just the cost. The old ones are fighting it. They call it off-planet corruption, but it's really the future they fear."

"There's so much still to be done."

"Oh, yes. We are a desperate people, no lie. But we have hope. I don't think you realize how much you've done, just by coming up here."

"I've done nothing," said Miles bitterly. "Sat around, mostly. And now, I swear, I'm going to end up doing more nothing. And then go home. Hell!"

Speaker Karal pursed his lips, looked at his feet, at the high hills. "You are doing something for us every minute. Mutie lord. Do you think you are invisible?"

#247 ::: Ginger ::: (view all by) ::: September 01, 2010, 09:17 AM:

Otter B @ 246: That story speaks volumes to me. I never fail to feel chills when I read it, and it still moves me to tears.

#248 ::: John A Arkansawyer ::: (view all by) ::: September 01, 2010, 09:26 AM:

OtterB@246: I tried to find the speech I like so much that I've typed it out by hand at least twice for the internet, but I can't, and Google Books has no preview for that page, but the search function suggests it can be found on page 272 of John Barnes' brilliant Earth Made of Glass. The speaker is Ix and he is explaining why tolerance has such a bitter taste. I am for civility and try to practice it when possible, but I think the real problem is power, who has it, and who doesn't.

That said, I think you're right that how you live your life has an effect on how others act, and that modeling the civility you want (with the caveat found on the front page about civil society and violence) is one effective way of developing it in others.

#249 ::: ddb ::: (view all by) ::: September 01, 2010, 10:08 AM:

praisegod barbones@243: Thanks (and thanks to TexAnne). My "in some degree" was intended to cover issues like that, though I didn't have that specific one in mind.

It's certainly true that "accommodations" have sometimes resulted in general benefits. In some cases, military and rescue workers being the obvious one, there's been a perception that "accommodating" inferior workers (I'm channeling the opponents there) would jeopardize a vital job, but often when people with different capabilities take on a job, they find different ways to arrange it that work just as well as before -- or better. (dcb@233 mentions moving torpedoes). (One should still be careful not to assume this will inevitably and always be true.)

The fixed-size pot is obviously not inherently true. On the other hand it's somewhat politically true -- it's easier (though not actually easy) to move money already in people's heads as "helping the handicapped" from one project to another than it is to get people to "increase spending" on helping the handicapped.

Which is one reason it's a good idea to push accommodation work out if we possibly can; building code enforcement rather than helping the handicapped! Hey look, we're not spending enough on helping the handicapped, we could also do z, w, and q!

My parents visited an acquaintance in Zurich, I think in the 1980s, who had just built a new house (so quite well-to-do). The expectation there was that people building a house would live the rest of their lives in it -- so it was normal to have all sorts of accessibility stuff in place from the beginning. This house even had an elevator (as I said, quite well-to-do). Apparently it was taken for granted that people would have periods of restricted mobility at various points in their lives.

#250 ::: OtterB ::: (view all by) ::: September 01, 2010, 10:25 AM:

John A Arkansawyer @248. Agree it's not wise to prize civility above all other virtues. There are some things for which it's necessary to rock the boat or point out that the emperor is wearing no clothes, especially if you're in dialog with someone whose definition of "rude" is "daring to suggest the universe doesn't revolve around me." Or whose preferred mode of interaction is to stomp you first.

I may have Earth Made of Glass at home. I remember reading it, and I'm generally a fan of Barnes, but I may not have kept it. It's on my "do not want to reread" list because I found it too depressing that (as I recall, could be off base) lbh xarj sebz gur ortvaavat gung fbzrbar unq orgenlrq fbzrbar ryfr gb qrenvy gur crnpr cebprff, ohg qvqa'g xabj jub, naq gur nafjre ghearq bhg gb or gung rirelbar unq orgenlrq rirelbar ryfr. But I remember Ix as a very interesting character. I'll have to go looking for that speech.

#251 ::: John A Arkansawyer ::: (view all by) ::: September 01, 2010, 10:29 AM:

OtterB@250: What I found so powerful and cautionary about Earth Made of Glass was a corollary to what you say, that rirelbar unq gur orfg vagragvbaf naq jnf gelvat gb qb gur orfg gurl pbhyq juvyr abg orvat gur fhpxre ng gur gnoyr.

#252 ::: Lee ::: (view all by) ::: September 01, 2010, 12:20 PM:

Dork Tower makes a point similar to praisegod's comment @167.
(Note: the link is to the beginning of the arc; click on "Next" to get to the specific strip in question.)

#253 ::: abi ::: (view all by) ::: September 01, 2010, 12:53 PM:

John A Arkansawyer @244:

I am afraid I disagree with your conclusion, though not with your premise. I think people talking about their own experiences get a lot of license. I think they get less when they don't listen to other commenters with different, equally difficult experiences.

Many people here have disabilities and disagreed with Matathias about his proposed solutions. This did not cause him to accord them the same attention that he demanded for himself. His attitude that his truths are too brave and too important for him to bother with respecting other commenters is, quite simply, not acceptable behavior on Making Light.

#254 ::: albatross ::: (view all by) ::: September 01, 2010, 01:11 PM:

ddb #249:

There really is a fixed-size pot ultimately, because we only produce so much. Neither ramps nor widened hallways nor extra teachers to mainstream special-needs students fall costlessly from the sky.

More to the point, our politics suffer from an overabundance of the idea that there's no fixed size pot. It lets advocates for every cause argue that there's no reason why they shouldn't be given more money. It's led us to run deficits even in years where the economy was good, time and again. It lets political leaders debate what should be done in various situations, without ever mentioning where the money will come from to do it. Invade Iraq? Build more aircraft carriers? Bail out GM? Bail out the biggest banks in the country in various hard-to-account-for ways? Sure, why not--it's not like there's a limited amount of money available for any of these things....

There is not in any sense an unlimited pot of money or resources to do any good thing you might name. We'd be better off if we could get away from the idea that there is such an unlimited pot, or that we can somehow avoid having to make any hard tradeoffs by getting rid of the dumb or unproductive stuff in the budget. (This would work, if those things could be gotten rid of. Good luck.)

#255 ::: abi ::: (view all by) ::: September 01, 2010, 01:38 PM:

albatross @254:

Although there is a theoretical ceiling to the money we can spend on the disabled, it's worth noting that the net cost of certain spending is lower than the gross.

Accommodations that allow the disabled to work and be productive more than pay for themselves. (So do cures, of course; how much money have we saved by not having to care for generations of polio sufferers?)

#256 ::: ddb ::: (view all by) ::: September 01, 2010, 02:06 PM:

albatross@254: Well, economics as a whole isn't a zero-sum game; the total pot can grow. But it's also not an infinite-sum game either, I agree. We can't just do everything we want necessarily (especially in this crowd, we're creative enough to think of "good" projects hugely in excess of any conceivable short-term funding).

My personal view is that Congress behaves insanely about deficit spending. They do it too freely when they shouldn't, and suddenly get allergic to it when it's really important. This is most likely because it's an issue that one side or the other can use to oppose something they don't like; so we're not seeing their real positions on deficit spending, we're just seeing it used as a tactic. It was probably right to do some sort of financial system bailout (we can never be really certain, and I'm not prepared to defend the exact one we did in detail). We probably need more stimulus spending.

Trying to figure out what any given law "costs" is terribly difficult, but the CBO seems to be maintaining its reputation as competent and honest (though not perfect or omniscient).

#257 ::: Lee ::: (view all by) ::: September 01, 2010, 04:09 PM:

albatross, #254: Or we can add to the pot. In the case of the Federal budget specifically, it certainly doesn't take up all of the GDP! But the logical place to increase taxes is at the top, and Republicans won't hear of it.

For that matter, we could fix the "shortfall" in Social Security with one stroke of a pen -- remove the cap on contributions. Right now, you pay FICA taxes on every penny you make... but the tycoons on Wall Street only pay on the first $108,600.

#258 ::: Steve C. ::: (view all by) ::: September 01, 2010, 04:21 PM:

Lee @ 257 -

For that matter, we could fix the "shortfall" in Social Security with one stroke of a pen -- remove the cap on contributions. Right now, you pay FICA taxes on every penny you make... but the tycoons on Wall Street only pay on the first $108,600.

Raising the FICA limit is one way, but we have to be wary. Payroll taxes are paid on income - salaries and/or wages. Capital gains, interest, stock options, and dividends are not subject to them, and the higher you go, the more that person's "income" includes them. It's not unusual at all for a CEO to have a salary of $300,000 and still make ten times that much.

#259 ::: ddb ::: (view all by) ::: September 01, 2010, 04:39 PM:

Steve C.@258: He'd still pay FICA on 3x more than he does now. That would be considerable progress.

On the other hand, I'd like to max out my FICA one year, just so I could say I've done it. (Now I wonder if maybe I just barely did one year, and have forgotten the details; maybe.)

#260 ::: Steve C. ::: (view all by) ::: September 01, 2010, 06:39 PM:

I maxed out my FICA a couple of times, but not by much. Both occasions were because of larger than expected bonuses.

Some years back, there were some employees of BMC (the software company) that belonged to an exclusive club. Back then, software authors who engineered a product that BMC sold collected generous royalties.

The club was called the January 15th club, and the sole criteria for membership was maxing out your FICA by January 15. This was back in the early 80's and the FICA limit was considerably lower, but still.

#261 ::: Mattathias ::: (view all by) ::: September 01, 2010, 06:48 PM:

I maxed out FICA once, back when the limit was considerably lower. I've never known anyone who did it by 15th January.

#262 ::: jnh ::: (view all by) ::: September 01, 2010, 09:21 PM:

I maxed out fairly often, getting larger paychecks for the last month or so of the year. Here is the data extracted from the Social Security site (for regular employees, self-employed and some contractors have different rates):
1975 14,100
1976 15,300
1977 16,500
1978 17,700
1979 22,900
1980 25,900
1981 29,700
1982 32,400
1983 35,700
1984 37,800
1985 39,600
1986 42,000
1987 43,800
1988 45,000
1989 48,000
1990 51,300
1991 53,400
1992 55,500
1993 57,600
1994 60,600
1995 61,200
1996 62,700
1997 65,400
1998 68,400
1999 72,600
2000 76,200
2001 80,400
2002 84,900
2003 87,000
2004 87,900
2005 90,000
2006 94,200
2008 102,000
2009 106,800
2010 106,800

[American employees' contribution to the Social Security retirement system is a fixed percentage (currently 6.2%) of the first n dollars, changing year to year, as shown in the chart above]

#263 ::: KayTei ::: (view all by) ::: September 02, 2010, 03:37 AM:

OtterB @ 246
Yes, this. It's one of the reasons I'm so open about my history of disability and my current limitations, even though I could easily pass for "normal" these days (whatever that is, yes). It's good for people to see that they shouldn't snap to judgement -- I had enough people try to convince my mother I'd never be good for anything but the most menial work; if I can raise awareness in a way that benefits someone else, I'm happy to do so.

It helps, of course, that I work for a large employer and am unambiguously excellent at my job. And I have been extremely fortunate in my colleagues. But I also just think that the more people realize how many people they know (or can imagine they might know) who have hidden or subtle disabilities, the more they realize that people are just... temporal, and individual in their needs. Similar argument to one that gets made in the gay community, I suppose, with the same ethical considerations regarding voluntary self-disclosure.

#264 ::: Dave Bell ::: (view all by) ::: September 02, 2010, 04:47 AM:

A lot of the fuss about pensions and social security comes from the effects of the low returns from investments--base interest rates and the stock markets--which means a given income is calculated as needing much more capital.

For most of us, there's a good chance that the return on capital will improve before we're due to be paid. But this pessimistic approach to the calculation isn't dishonest. The way the results are being used, on the other hand...

#265 ::: Mattathias ::: (view all by) ::: September 02, 2010, 05:54 AM:

jnh@262: minor quibble. The rate is double what you quote; the other half is charged to the employer as a payroll tax. If you're a contractor, you pay both halves and call it self-employment tax.

#266 ::: Mark ::: (view all by) ::: September 02, 2010, 08:54 AM:

And to clarify the quibble, jnh's chart wasn't indicating the maximum amount of payroll tax, but rather the maximum income on which payroll tax is levied. But yes, employer and employee each pay 6.2% on that income, with the self-employed dinged for the full 12.4%.

#267 ::: Terry Karney ::: (view all by) ::: September 02, 2010, 09:32 AM:

I'm traveling, so I can't say much (and why doesn't the "l" in travel double? The "right" spelling looks wrong to me); or more to the point, will be hours away before I can comment again.

I have a disability. It's invisible. It's actually one of those things which could make me a real pain to hire... because it could get very expensive, a very fast (if I have a major flare, given my drug allergy, the treatments are non-trivial).

I, as a point of personal care, insist on mentioning it. If I don't, then when I need an accommodation, I can ask for it. I also know that, should I get employer provided health care, and not mention it, I will lose my coverage; and in this case, rightly so.

I like the effect of accommodations. Sidewalk cuts make my life easier; as a pedestrian. Elevators make my life easier, as a shopper, and employee.

I think they make cures easier too. They remind people of what it might be like to need that sort of thing, and encourages them to think preventing it might be a good idea.

At the risk of doing some troll-calling; it's like vaccines. No one I can recall was morally opposed to them when I was a kid. Why? Because they saw measles, and polio, and mumps. If they didn't they had familial memory.

That's, mostly, gone now. So people think, we don't need the vaccines. Being out of sight leads to being out of mind. Out of mind means things like cures don't matter.

So, I think the overt things, lead to the other things, which is why I disagree that accommodation is bad. It's like yeast.

#268 ::: praisegod barebones ::: (view all by) ::: September 02, 2010, 10:22 AM:

At the risk of doing some troll-calling; it's like vaccines. No one I can recall was morally opposed to them when I was a kid. Why? Because they saw measles, and polio, and mumps. If they didn't they had familial memory.

Completely tangential, but evoked by Terry's mention of polio vaccination: a few years back, we came heart-breakingly close to eradicating polio world-wide. (My sister, who is an epidemiologist, told me this: one of her first jobs after qualifying at Master's level involved doing mathematical modelling that was aimed at establishing when, on certain assumptions, polio would have been eradicated, and how long it would be before we could know.)

It turns out to be a complicated question , partly because (if I remember correctly) polio has asymptomatic carriers; and it's an important one, because the polio vaccine uses live virus (so you run a small risk of re-introducing the virus to a population if you keep vaccinating after you've succeeded in eradicating it.

Unfortunately, the Darfur crisis, among other things, put paid to the chances of eradication.

(Tangent to the tangent, for maths geeks only; the mathematics you use in epdemiology(or at least that she was using for this project) is fascinating: because you're interested in discrete changes (whole numbers of people being infected and getting ill) rather than continuous ones, you do everythig with difference equations, rather than with calculus)

#269 ::: praisegod barebones ::: (view all by) ::: September 02, 2010, 10:32 AM:

Oh, and in response to the same two lines: absit omen

#270 ::: KayTei ::: (view all by) ::: September 02, 2010, 10:39 AM:

Terry Karney @ 267
"I also know that, should I get employer provided health care, and not mention it, I will lose my coverage; and in this case, rightly so."

I am really struggling with this statement, on a wide variety of fronts. Mostly, a profound values disconnect with the statement "rightly so."

#271 ::: Mattathias ::: (view all by) ::: September 02, 2010, 12:43 PM:

KayTei@270: Likewise.

Everyone else: Responses to the dogpile late in the thread are pending time to reread the thread and respond. You are not forgotten, only postponed.

#272 ::: pericat ::: (view all by) ::: September 02, 2010, 12:45 PM:

I'm not seeing the 'rightly so' either. If the medical condition is not directly related to the job requirements, why should the worker have to discuss it with their employers at all?

It's a gotcha, conceived solely for the benefit of insurance companies. It's certainly not invoked for all medical conditions. I never, ever had to detail for employers how many wisdom teeth I had left, or whether I was wearing corrective lenses or bits of coloured glass, and yet there was no question of not paying for new glasses or dental work down the line.

If the insurance coverage is promised as part of the worker's overall compensation, it should be provided, full stop, not contingent upon the worker's ability to detail every last thing that's gone on with their innards in the last however many years.

#273 ::: Mycroft W ::: (view all by) ::: September 02, 2010, 12:59 PM:

I don't see anything wrong with "rightly so" - for the purpose of the insurance company (well, except for the fact that it's needed to be mentioned at all, because there's no basic universal insurance coverage down in that medieval country south of me). But unless it has job implications, I don't see why the employer needs to know.

Unfortunately, what's going to happen is either:
- there's a person in HR responsible for collecting and passing on this information to the insurance company, so you are telling your employer things they are not entitled to, but get on the sly, or
- everything's done without HR intermediation, but when the insurer comes back and says "well, your premiums are now $X*1.65", it's not going to be hard to figure out who (if not what).

I agree, requiring a company that insures in a state to put together a state-wide "small-company pool" so that the risks of one outlier is shared reasonably amongst employers (making a 50 000-employee "company", more or less (and yes, I realize that in some states, it would be more like a 1M employee company)) would be a good idea. I'm not sure it wouldn't be a good idea for the insurance companies, as well - if everyone paid a little bit for the few big risks, instead of three companies deciding that they can no longer afford health care coverage at all because of the one outlier (or that one person being "at willed" to keep the costs down), they'd might have more customers.

#274 ::: ddb ::: (view all by) ::: September 02, 2010, 01:17 PM:

Mycroft W@273: One little change to insurance regulations fixes this whole area. Require any insurance company that offers a particular insurance plan to anyone (a combination of providers covered, treatments covered, and price) is required to sell that exact plan to everyone who asks for it. Basically, this forces them to set rates based on the entire big pool. Since the whole point of health insurance is pooling risk, the bigger the pool the better.

#275 ::: David Goldfarb ::: (view all by) ::: September 02, 2010, 03:54 PM:

Terry@267: I believe that in England the "l" in "traveling" does double.

#276 ::: Bombie ::: (view all by) ::: September 02, 2010, 04:10 PM:

David Goldfarb @275:

Yes, according to my oxford:

travelling, travelled = BrE
AmE usually: traveling, traveled (Both of which get red squiggly lines. Apparently my spell-check - and my brain - is set to British English spelling)

#277 ::: ddb ::: (view all by) ::: September 02, 2010, 05:06 PM:

Bombie@276: My American Firefox spillchucker accepts traveling, but not travelling.

#278 ::: Mycroft W ::: (view all by) ::: September 02, 2010, 07:33 PM:

and, in counterpoint to ddb, my Canadian spillchucker accepts travelling, not traveling.

Americans tend to simplifying English orthography (but not as badly as Mr. Twain "suggested"; most things that are differently spelled in British and American are simpler/shorter in American.

Arguments on the desirability of this process should be made "on the back of a postcard, addressed to anyone but us." - Humphrey Littleton, ISIHAC (from memory).

#279 ::: Terry Karney ::: (view all by) ::: September 02, 2010, 09:40 PM:

The "rightly so" is dependent on the strange quirks of US healthcare. As the insurer has a limited pool, they ask for conditions, so they can actuarialise cost. I think this wrong (I want a national healthcare, paid for by taxes).

In my experience, my employers have (when I had employer based healthcare... which I can't afford to have anymore; because if I am honest the provider will price me out of a job, by raising the rates; even though my present costs are not significantly more than other drugs seen as perfectly affordable, like birth control, but I digress), as I said, when I had such healthcare my employer never saw the forms. I filled them out and mailed them in the, stamped, envelope provided.

#280 ::: praysegod barebonys ::: (view all by) ::: September 03, 2010, 12:33 AM:

Mycroft 278: Lyttleton. (No kidding: his brother taught French at my school.)

#281 ::: janetl ::: (view all by) ::: September 03, 2010, 02:06 AM:

Another arc bender: Barbara Roberts had an autistic son, and became involved in local politics in 1969, advocating for school programs for children with handicaps. She served on the local school board, then in the Oregon House of Representatives, then statewide office culminating in becoming Oregon's first (and only) woman Governor. During her time in politics, she worked for people who were marginalized. After she left office, and teaching, her volunteer work included a weekly shift at "Our House of Portland", a hospice for people with AIDS.

#282 ::: Julia Jones ::: (view all by) ::: September 03, 2010, 02:47 AM:

Terry @279 even though my present costs are not significantly more than other drugs seen as perfectly affordable, like birth control, but I digress

Terry, from knowing you I don't think you meant it this way, but that comes across as saying that birth control drugs are lifestyle drugs rather than medical necessity drugs, an attitude that is common amongst people in the US who think that women shouldn't be allowed access to birth control on insurance because sex is entirely voluntary and women should have to pay for their pleasures.

They're not lifestyle drugs, and they're not in practice readily available under US insurance coverage, going by my experience. The insurance companies have a nice little get-out in which they will cover only one class of pill, on the ground that it is the best approximation to the natural cycle and therefore the best one for women to use. If you are one of the many, many women for whom that class is entirely unsuitable, tough luck. This is deliberate policy, according to my doctors -- it allows the insurance companies to theoretically offer coverage while in practice not having to pay out on many claims.

If you are one of the many women in that group who are taking the pill as treatment for a medical condition, you pay out of your own pocket in many plans, or you risk going untreated, or your doctor prescribes you some other source of hormone treatment which has worse side-effects. Ironically, the latter two options may cost the insurance company more in the long run[*], but presumably the bean counters don't intend to leave any loopholes that would allow women who "only" want it for contraception to get it at their expense.

[* My gynaecologist had quite the rant on the cost of maintenance drug treatment versus emergency surgery.]

#283 ::: Bombie ::: (view all by) ::: September 03, 2010, 03:13 AM:

Julia Jones 282

The way I read it, Terry was comparing his drug to a more widely known and accepted medical necessity drugs (which, according to your comment, was sadly more a hope and less a reality) as in that his drug should also be accepted, not the other way around.

Terry Karney @279

I still have some trouble understanding your use of 'rightly so'. Is this from the view of the insurance companies? As in not mentioning known medical conditions is breach of contract and will legally, rightly, cause you to lose your coverage while from your point of view this system is not just or right at all.
Or am I reading this wrong?

#284 ::: Terry Karney ::: (view all by) ::: September 03, 2010, 03:37 AM:

Bombie: As the system is built, the contract requires the customer to disclose all known conditions. Therefore, to hide one (chronic, and incurable) would be a breach of that contract, yes.

The system is insane, but it's the one we have (it happens I have gov't provided healthcare, so this this isn't a problem; though there are some things not covered by it, which (even though not provided) I have to pay for out of pocket if I want them, should I go to another provider (this came up because I wanted to get an STD check; it's not covered, as a routine test, I'd have to show cause, and I didn't have any: Planned Parenthood has an option for people who don't have both financial hardship (I do, not enough that it will break me, but enough that it would have been a real help to get all/some of it rebated. Because I was honest, I had to pay full freight, even though; for that, I have, in effect, no coverage. The system is screwed).

#285 ::: Devin ::: (view all by) ::: September 03, 2010, 03:40 AM:

Bombie@283

I take Terry as meaning that he is party to agreements, contracts, and laws that he may not love or prefer but he nonetheless considers himself bound to follow.

For instance, I think hungry people should be fed, but if I was hungry and I stole food, I'd rather expect to be caught and (most likely) 86'ed and barred from the premises. I might say "rightly so" in the same way that Terry does: the engines which put that choice in front of me are not right or just, but nonetheless my theft and Terry's hypothetical lie are not right actions either. The wronged party is still wronged even though you shouldn't have to lie or steal to get food and medicine.

#286 ::: praisegod barebones ::: (view all by) ::: September 03, 2010, 04:44 AM:

I'm finding Terry Karney @ 284 uncharacteristically hard to parse (mostly in the last paragraph).

The odd bolding of the last few lines makes me wonder if something went wrong in editing.

#287 ::: David Harmon ::: (view all by) ::: September 03, 2010, 07:12 AM:

Terry, pericat, et al: Thus exemplifying the difference between healthcare insurance and healthcare assurance.

praisegot #286: I'd assume he muffed the close-bold after "both". I've done that sort of thing often enough myself, and especially when the word I'm tagging starts with the tag letter.

#288 ::: David Harmon ::: (view all by) ::: September 03, 2010, 07:13 AM:

And sorry about muffing your name. (Odd thing -- only in the past couple of years have I noticed myself making phonetic typos.)

#289 ::: praisegod barebones ::: (view all by) ::: September 03, 2010, 09:46 AM:

David Harmon:

Even without the bolding it still seems like a sentence fragment. It feels as though the sentence should carry on after the parenthesis.

(Here's what's puzzling me: what does 'both' refer to/govern? Is one of the two things 'financial hardship'? If so, what's the other? Or is it picking up anaphorically on something referred to earlier? If so, then what?)

re typoes: I've made some egregious ones, both here and in emails, in the past few days.

#290 ::: Terry Karney ::: (view all by) ::: September 03, 2010, 11:24 AM:

I was tired (6 hours of really nasty riding... too much wind, I really ought to get moving soon).

I meant to say, Both hardship, and no insurance.

I have, for practical purposes, both; but technically, I have insurance, even though I don't for that set of tests, ergo, it's treated as if I were going, "out of service".

#291 ::: Mycroft W ::: (view all by) ::: September 03, 2010, 11:50 AM:

PG BB@280: I knew that. Bugger. Thanks. (given my real name, one of the reasons for which I don't use it online is its frequency of misspelling, it's a thing for me to get names right. It really bothers me when I don't).

#292 ::: Dan Hoey ::: (view all by) ::: September 03, 2010, 12:27 PM:

Back to the original topic, NPR had a segment last night about Theodore Parker, the 19th century abolitionist and Unitarian minister from whom Martin Luther King got "the arc of the moral universe."

Parker's phrase "a government of all the people, by all the people, for all the people," from an 1850 sermon, has also been retooled for a more famous speech.

#293 ::: Mattathias ::: (view all by) ::: September 03, 2010, 12:30 PM:

Julia@282: This is deliberate policy... -- it allows the insurance companies to theoretically offer coverage while in practice not having to pay out on many claims.

Birth control isn't the only class of care for which this is true.

#294 ::: Terry Karney ::: (view all by) ::: September 04, 2010, 02:01 AM:

Julia Jones: I chose birth control (of whatever method... I had a partner who, except for the pill, which she knew she'd end up not properly taking), cycled through every available method available. It was a learning experience for the both of us), because the approximate costs are in the same league as my pills (well no, diaphragms and IUDs are cheaper, but the one is not well favored, and the other hard to get; that was the one we had to pay for out of pocket; her provider wouldn't prescribe because she had not had a child).

So denying me all coverage, because the course of treatment for my disease would cost about what birth control (which I don't see as a lifestyle choice, or I'd not have put it up against a non-lifestyle issue) costs was the point.

I chose it because it's a widely prescribed medication, one which is constant, for a large body of the covered group, and which deals with a condition which might (but need not) become more expensive if they are not prescribed.

In my case, the way they do it is to make my whomever is providing the coverage for me (thank goodness for the VA not caring about that sort of cost) unable to shoulder the premiums, even though the odds of it costing the insurer more than a regimen they see as perfectly acceptable (even if some are weaselly little skinflints and misers) cost in other contexts.

#295 ::: Elliott Mason ::: (view all by) ::: September 04, 2010, 11:24 AM:

In re Terry Karney's 294 and insurance companies refusing to pay a tiny charge to prevent a huge one later ... there's a LOT of this in and around childbirth.

Start with, on many policies, no coverage whatsoever for midwifery care, even licensed midwives, even nurse-practitioner midwives. OB for the entire prenatal period and birth or they don't pay. Despite it being shown, both in Europe and here, in large sample sizes, that for overwhelmingly most births, midwife care is both about half as expensive and LEADS TO BETTER OUTCOMES (fewer C-sections, fetal deaths, maternal complications) than OB-for-everyone.

Then we get to the actually-in-labor part, and the craziness. I had heard from many of my post-gestation friends that laboring in a warm tub of moving water is amazingly effective at (a) ameliorating the pain of early and middle labor, and (b) keeping the gestator relaxed and rested, and therefore in better shape to not be already exhausted by the time you enter the final stretch.

I called my insurance provider to find out if they covered them. I got a baffled stonewall from the lady on the other end. "If it's medically necessary." "If your doctor says you need it, we cover it." No available list of cover-this, no-cover-that. You have to guess. So I called the hospital to find out what it would cost to pay for one myself -- I know the hospital had them, they inflate and they put them in the (huge) bathroom in the laboring suite. I was thinking, if it's $100-200, that might well be worth it, out of pocket; if it was thousands, forget it.

"Who's your insurance?"
"That doesn't matter, they won't pay for it. I want to know how much it'll cost out of pocket before I urge my doctor to set me up with one."
"Well, if you can't tell us who your insurance is, we can't tell you what it costs; the price is dependent on what insurance company is paying."
"They aren't, I am. What does it cost?"
"I'm sorry, we don't do that."

..... WHAT?

And so on, and so forth. Throughout the birth process, simple, straightforward things that lead to good outcomes are non-covered, while expensive interventions, scheduled C-sections, etc etc etc, and the little machine that goes BEEP are cheerfully paid for by insurance ... sometimes.

It was exasperating.

Luckily, I now know about several midwifery practices who keep an OB on staff to sign the paperwork (and step in to intervene, in the rare cases they need one), and we're definitely doing that next time.

#296 ::: abi ::: (view all by) ::: September 04, 2010, 11:33 AM:

I recall being surprised, when I went to my UK GP for birth control pills, that they were free (all contraception is free on the NHS). I had expected a moderate prescription charge, rather than the price I'd paid for them in the US.

I asked why they were free—not complaining, mind, just asking. "Leaving any questions of morality and ethics aside," he replied*, "it's cheaper for the NHS to pay for contraception than it is to pay for abortions."

-----
* he probably put that in because I'm American. Not that there isn't a debate about abortion in the UK, but it's not so in your face.

#297 ::: Marilee ::: (view all by) ::: September 04, 2010, 06:28 PM:

Yesterday's WashPost had an article based on a study showing that employers are putting more of the health-care money on their employees.

#298 ::: Bill Stewart ::: (view all by) ::: September 05, 2010, 07:44 PM:

And in today's edition of Someone was WRONG on the Internet, our local paper had an article on the status of the proposed burqa ban in France, and one of the "contributors" to the comment section was blaming the Muslims for the First Amendment being called into question here in America.

#299 ::: janetl ::: (view all by) ::: September 05, 2010, 07:50 PM:

Bill Stewart @ 298: For your sanity's sake, never read the comments thread on a newspaper. Any newspaper.

#300 ::: KayTei ::: (view all by) ::: September 06, 2010, 11:21 PM:

Terry Karney @ 279
The healthcare reform package tried to address that in some ways; I'd take a look at section 1101, which is directly on point. Note that while the papers mostly picked up on the creation of public plans for high risk employees, there are also provisions to assess fines against any employer or health plan or whoever found to have discouraged sicker individuals from enrolling in another health plan.

Way less than I wish had been done; I'm reminding myself that we can fix the details as we go on, and this is still all a huge improvement over what we had.

(Sorry for my somewhat late response; I was trapped in a cabin in the mountains with a bunch of strangers and no internet for the weekend. Alas, the only murder mystery while there was decidedly hypothetical.)

#301 ::: KayTei ::: (view all by) ::: September 06, 2010, 11:23 PM:

*high risk individuals.

argh.

#302 ::: Jacque ::: (view all by) ::: September 15, 2010, 11:47 AM:

Me, I come at the whole Access issue from a very selfish point of view:

Enhanced access makes things easier. I am Lazy.* Therefore Easier Is Good. That it also aids people who are not as able to move/see/hear as I...well, heck, that's a nice side benefit, too. ;)

*I could almost claim Lazy as a religion.

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