On Terri Schiavo

As Harriet McBryde Johnson says, "The Terri Schiavo case is hard to write about, hard to think about." I've had an emotional deer-in-the-headlights response about it for quite some time now. Months. And while the legal options for saving Terri Schiavo from starvation may have been exhausted, I'll offer here some writings by others that provide the disability perspective so lacking in the mainstream debate.

Harriet McBryde Johnson on Slate, via Disability Law:

In addition to the rights all people enjoy, Ms. Schiavo has a statutory right under the Americans With Disabilities Act not to be treated differently because of her disability. Obviously, Florida law would not allow a husband to kill a nondisabled wife by starvation and dehydration; killing is not ordinarily considered a private family concern or a matter of choice. It is Ms. Schiavo's disability that makes her killing different in the eyes of the Florida courts. Because the state is overtly drawing lines based on disability, it has the burden under the ADA of justifying those lines.

Steven Drake, research analyst for Not Dead Yet:

Given the current research regarding brain activity and misdiagnosis, it's a virtual certainty that countless people have been helpless to prevent their own deaths through starvation and dehydration. There's an analogy to DNA evidence and the death penalty. Here in Illinois, the staggering numbers of innocent and wrongly convicted people on Death Row resulted in a moratorium on the death penalty. Whether you agreed with the death penalty or not, everyone was forced to find ways to make sure no innocent person ended up on Death Row again. The same amount of concern should apply to medically induced deaths, in which the numbers far exceed the number of convicted people executed each year.

More by Stephen Drake:

People on the right are killing us slowly with cuts to the budget and Medicaid while the people on the left kill us quickly and call it "compassion" -- either way we end up dead -- AND WE OBJECT.

Ragged Edge Editor Mary Johnson's outstanding comments at Common Dreams:

There isn't a single disability rights activist I've heard from who is happy that things ended up at such a sorry pass, and who isn't afraid that this will make liberals hate them even more than they now do. Yet it cannot help being noticed that it generally depends on whose ox is being gored as to what side of the states' rights debate one comes down on. We're all for federal laws when it comes to things like civil rights -- and gay marriage. We're not, though, when it comes to things we've labeled as "right to die" -- which we say are "privacy issues."

We might want to take another look at the cost of such privacy.

Further links to follow here.

Pioneer plans town for sign language users

Marvin T. Miller plans to start a town in South Dakota for users of American Sign Language. Deaf since birth and the co-founder of the first national deaf newspaper, he has dreamed of a community based on sign language communication since his youth. Laurent, named after Laurent Clerc, a French educator from the 1800's who founded the first school for the deaf in the United States, would be the first town started in the region in well over 100 years.

As I've noted before, Martha's Vineyard was a deaf community in the 1800s. The Minneapolis Star Tribune mentions this from a slightly different perspective:

Laurent would not be the nation's first deaf community. More than 200 years ago off the Massachusetts coast, a group of European settlers on the island of Martha's Vineyard carried a gene for deafness and produced generations of children who could not hear.

By the 19th century, one village on Martha's Vineyard had so many deaf residents that even those who could hear had to learn sign language to succeed there.

What I've read previously indicated that sign language usage was so well-integrated that residents were not so much obligated to learn (read: burdened with the chore of communicating with the Other) but enjoyed all the benefits of bilingualism that anyone in a foreign country would.

While the culture on Martha's Vineyard resulted from heredity and geographical isolation of the time, there have been concentrations of deaf residents in many regions since then. But nothing quite so deliberately planned has been achieved before. From the NYT:

The difference in Laurent, say some among the 92 families who have reserved spaces in the town from as far as London and Australia, is that every element of it would be designed with them in mind. The homes and businesses, they said, would incorporate glass and open space for easy visibility across wide distances. Fire and police services would be designed with more lights and fewer sirens. High-speed Internet connections would be available all over town, since the Internet and Video Relay Service have become vital modes of communication for deaf people. And any shops, businesses or restaurants would be required to be sign-language friendly.

Not everyone interested in living in Laurent is deaf, though Miller, his wife and four children all are. Most deaf children are born to hearing adults, and education of deaf children -- with the frustrating tension between public school language barriers and special school seclusion -- is a primary motivation for Miller. Not surprisingly, fierce debate centers around whether deaf people should integrate more fully into society or exclude themselves with enclaves like Laurent hopes to be. Often, this argument depends on whether deafness is seen as a medical condition of the individual ("curable" for some through cochlear implants) or as a culture to be celebrated. Laurent is obviously a cultural project and as planning continues, progress can be followed on Marvin's Laurent, SD, blog, added to my sidebar at right.

NPR features artist Sunny Taylor

A wonderful interview on NPR introduces Sunny Taylor and discusses her realistic oil paintings and disability rights philosophy. View her portfolio on her personal site and read what she says about disability, work and power in a capitalist society, as well.

French ad offers fresh perspective

A French energy company has produced a video advertisement about access for the disabled that is quite interesting. The link leads to a page in French (naturally) where you can choose high (haut) speed or low (bas) speed video. Here's a quick description of the ad:

"One is the Loneliest Number" is sung by Aimee Mann in the background. On a noisy city sidewalk a nondisabled woman is jostled slightly by the busy activity of numerous people in manual wheelchairs hurrying about their business. She appears to be wanting help with something but no one stops to talk to her. A different woman in a bank informs a teller she would like to open an account, but he responds in sign language she clearly cannot understand. On a street in
the heavy rain, a nondisabled man slips and slides to keep his footing while people in wheelchairs easily roll by. At a public phone, a nondisabled man stoops over awkwardly because the phone is adjusted for a seated person's height. Across the street, a person in a wheelchair points at him because he looks so strange. A "pedestrian" traffic signal that would usually show a symbol of a person walking has a symbol of a person wheeling instead. It turns green and a happy young man and woman in wheelchairs cross together. In a library, a nondisabled man steps around a woman using a white cane, but when he looks at a book he sees that it is all in braille and he cannot read it or any of the books around him in the library. At the bottom of the screen: Le monde est plus dur quand il n'est past conçu pour vous. Translation, is, I believe: The world is harder when it is
not conceived for you. Then a voice says: Desormais, les espaces EDF sont accessibles à tous. From now on, the spaces of EDF are accessible to all.

I'd be curious to know how nondisabled viewers of this ad interpret it. Would their description include everything mine does above or would they not have noticed some things that were obvious to me? For example, would they notice that the first nondisabled woman is not only the lone person without a chair but seems to need some help and no one stops? Would they notice that the disabled person pointing to the man at the phone is staring because he is not "normal?" These observations of the content of the advertisement involve inversions of everyday encounters to me, but does a nondisabled person viewing the ad even register that this is what is happening? I'd be interested to know.

The ad isn't a perfect translation of the disability experience, of course, but it is much more sophisticated than most cultural statements about accessibility. It reaches beyond the idea of ramps and physical adjustments of the environment to include social relations and the conceptual privilege nondisabled people enjoy by sustaining an environment that is not "conceived" as being for everyone.

Often, the argument against compliance to the ADA is that disabled people are demanding something "extra" and their quest for equality oppresses business owners or employers who must suddenly provide something additional to the disabled person that no one else is asking for. The implied belief is that the nondisabled person never asks for anything "extra," though this is not really true. Rather, the built world is "conceived" to include the extras they might need. Lights, for example, which none of us who can see consider an extra at all, but a blind person surely doesn't need. Another "extra," as seen from a traditional male perspective is on-site daycare at work. Of course, that view involves both the conception of a world where women take care of all the children AND stay at home to do it. "Extra" is in the eye of the beholder in many instances of disability access too.

Yet the idea that accommodating disability is an extra is so firmly implanted in our culture's conception of the world that we don't even see our nondiscrimination policies toward the disabled for the proof of and continuation of marginalization that they are. Look at the simple example of "disabled person access" signage. We have designated signs for where disabled people can find inclusion in our society. Can I get in this building? Look for the sign. Can I ride this bus? Look for the sign that allows for my existence on board. (Of course, even the universal symbol for disability is marginalizing in that a stick figure in a wheelchair hardly illustrates access for someone who is deaf.)

The signs ARE useful when used to designate actual wheelchair accessibility (which often has no relationship to compliance with the legal standard), but this is because the rest of the world continues to be conceived of without a thought for inclusion of everyone. And the ways the signs tend to separate us out is a form of segregation, however benign the intention. Having a place to put disabled folks in is as dangerous to us and our ability to be a part of society as having no place for us at all. We want to be everywhere. We want signs to be redundant. We want all of society conceived to include us.

There's a short story that further illustrates this need for a paradigm shift. In a fictional utopia of disability inclusion in the year 2050, a historian tells the awakened Crip Van Winkle how things have changed:

All conveyances, public or private, for transportation by land, air, sea and cyberspace, for individual or collective travel are naturally covered by the Universal Design principle. You don't seem to understand, van Winkle, the United States of Europe officially abolished Apartheid in the year 2024 -- 30 years after South Africa but better late than never. Since then, Universal Design has been the law of the land and the international sign of access that you guys were so proud of, is forbidden. It singles out and stigmatizes a particular group of citizens. Besides, it is not necessary anymore -- I guess it never really was necessary. Already in your day and age it would have been better to mark the places that were inaccessible in order to point out the full extent of the injustice. By using the symbol of access you did yourself a disservice, because the symbol served as an alibi for the accepted norm of inaccessibility emphasizing the exception rather than the rule.

Like the short story, the French ad attempts to reveal the ableist paradigm we all live under by inverting it. While a clever advertisement doesn't indicate how well the company achieves inclusion in the real world, the awareness it shows is refreshing. It suggests that lack of inclusiveness is a failure of creativity that should not be explained with any alibi.

(Ad via Aleja.)

Jarek Molski and me

Sam at the Disability Law blog (the first one listed on my sidebar) reports on several important new stories, including a new NEJM essay by doctors in the Netherlands on killing disabled newborns and a judicial opinion issued on the Molski case in California. It's the Molski case I want to focus on here now.

Jarek Molski, a 34-year-old resident of Woodland Hills, California, has filed more than 400 lawsuits against businesses all over California charging noncompliance of Title III of the ADA as well as state laws preventing disability discrimination. While Molski sued for damages (and personal injury in many instances) under the California statutes, the ADA has received the brunt of the complaints from business owners and media reports. Often, publicity over Molski's actions fails to make the distinction that Title III of the ADA does not allow suit for damages. (Clint Eastwood failed to make this distinction as well, when he testified before Congress supporting weakening of the ADA.) Ironically, this limit to the federal law contributes to the problem of continued noncompliance of businesses nationwide -- and encourages serial plaintiffs like Molski. Sam explains:

The public accommodations title of the ADA does not authorize an award of money damages. Without that financial incentive, it's hard to find plaintiffs or lawyers who believe it worth their time to file ADA public accommodations suits. Even people who really were excluded from stores or restaurants that were really in violation of the ADA often will not want to go through the stress and hassle of an ADA suit if the best they can do at the end of the day is get a court to tell the defendant to go and sin no more. So the plaintiffs in ADA public accommodations suits are likely to be disproportionately ideological plaintiffs -- people who see it as in some ways their mission to make their communities accessible. Ditto for the lawyers. Such people are likely to file lots and lots of suits. There's nothing inherently suspect about that.

To go even further, I could see a serial plaintiff using damages from the state statute rulings to "fund" further noncompliance complaints. After all, 15 years on the books hasn't been enough to encourage thousands upon thousands of businesses nationwide to install even simple ramps. Like any law, the ADA and other disability nondiscrimination statutes can surely be abused, but I have a difficult time finding sympathy for inaccessible businesses I could never patronize that gripe about complying with a law passed in 1990.

In my hometown, both the local post office and the renovated screening rooms of the movie theater are inaccessible to me. To be clear, the only post office for miles around has no way for me to enter and no current plans to change because of the age and historic nature of the building. Dozens of other local businesses are inaccessible too, and this is not unique to this current residence of mine. Like other mobility-impaired individuals, when I consider going somewhere new -- when friends or family discuss a social outing with me -- the first consideration we must have is whether or not the place we wish to go is accessible. If it complies with the law. As often as not, we must alter our plans. If I decided to sue every business I came across that was truly violating the law just by failing to give me entrance into their front door (never mind restroom accessibility, which is equally important, really), I would not have to exert myself to become a serial plaintiff too. Noncompliance is everywhere.

Update, March, 2007: Last time I checked, the local post office says they will lay down an extremely steep (not-up-to-code) ramp at the back entrance if you call ahead for it. I've never tried this and don't know if it actually provides useability of any kind.

And the local multi-screen movie theater has installed stadium seating that requires wheelchair users to sit very close to the screen. I haven't been there since starting to use the ventilator, but before that I could not use the designated spaces without causing some serious neck pain from craning my neck. Installed seating close to the screen compensates for this problem by letting the customer recline a bit, but wheelchair users don't have that choice and cannot sit farther from the screen because of the stadium-seating stairs. This is an example of innovation for nondisabled people that makes the venue inaccessible for those in wheelchairs.

Rapists target disabled women in Zimbabwe

This brief news report states that disabled women in Zimbabwe are being raped because of a widespread myth that -- like virgins -- sex with them will cure a man of HIV/AIDS.

Cure 'em or kill 'em on ABC soaps

This past week two different ABC soap operas had storylines culminating in the typical cure 'em or kill 'em scenario mainstream entertainment uses to illustrate it's angst about disability. Both situations involved long-time male characters whose lives have been intricately woven into the shows over more than a dozen years. Both characters have held typical male hero status in the past for their actions, physical attractiveness and morality, and both have been very popular with fans of each show.

On All My Children, Edmund Grey had been a paraplegic for many months now following some sort of tragic accident, and though the show's seemingly positive commitment to not miraculously curing him was a chance to explore the reality of life with a wheelchair, they did not take that opportunity. Instead, Edmund grew bitter, bemoaned the loss of his sexuality and distanced himself from his beautiful wife.

Edmund did return to his job post-injury, though how he managed to get there isn't clear, especially because of the ornamental nature of the ramp in the family mansion's sunken living room. The ramp -- long, lovely and not too steep -- was blocked by a door swinging inward into the living room. No wheelchair would have been able to get around that door. If the ramp had been moved over six inches or built wider, it would have been functional and a true example of making an awkward inaccessible room user-friendly. But actually living with a disability was never the point of Edmund's injury and living disabled was never meant to be Edmund's fate. Bitter disappointment and death apparently were.

Edmund was murdered last week -- some typical whodunit mystery -- and his tortured soul and twisted body are finally at peace. Oh, there had been risky surgeries to try and heal him, talk of marriage counseling and giving post-injury life a chance. Everyone but Edmund saw hope and alternatives to his angry impotence. But since a cure was impossible (as it should be, at this point in time, if spinal cord injury is the impairment), so it was death -- the other option for disability, once again. And yes, Edmund's dead body lay on a hosptial gurney, assuring the viewer he would not reappear years later without some supernatural intervention. He is well and truly dead.

And on General Hospital, Lucky Spencer was shot and lapsed into a "persistant vegetative state." On a ventilator, the doctors all believed him a hopeless case. In a clear adaptation of the Terri Schiavo legal battle, his father wasted no time and rushed to court in a fight against his son's aunt, brother and many friends who wished to keep Lucky alive. Perhaps three days had elapsed since his injury, but Lucky's father believed he must "pull the plug." His theory, tearfully pleaded in court, was that his son understood danger and needed the threat to his life. When the ventilator is turned off, if Lucky is "still in there somewhere" he will react on instinct and wake up, his father said. If not, it was useless all along. But Lucky's father felt this was the cure.

And of course it was the classic "cure." One way or another, the problem would be solved. The judge ruled for the father unplugging life support and miraculously Lucky began to breathe on his own. In a clear example of cure 'em or kill 'em dramatics, the cure was to either wake up instantly or die. Either way disability and the real issues of injury and impairment -- along with the social judgments making a story like this acceptable -- were disappeared. Lucky was almost immediately restored to perfect health and the ethical decisions made in court reinforced that dead is better than disabled.

Spector v. Norwegian Cruise Line

On Monday, the U.S. Supreme Court heard arguments as to whether or not the ADA should be enforced on foreign-flagged cruise ships which dock at U.S. ports. Emerging Horizons offers a summary of the oral arguments and NPR provides some good overall coverage of the legal conflict involved. Spector v. Norwegian Cruise Line stands to be the next test for the ADA, which the court has repeatedly weakened, mostly in decisions over what constitutes a disability and who then qualifies for protection under the act.

This case will likely hinge more on the value the court places on U.S. civil rights, generally, versus the interests of the international community, as the oral arguments suggested. As the ADA is applicable -- or not -- so will be any other U.S. anti-discrimination laws, it was pointed out. This seemed to add a new light to the cause, as discrimination on the basis of race was mentioned as a practice that could not reasonably be barred using the Civil Rights Act of 1964 if the anti-discrimination law for Americans with disabilities is found inapplicable to a foreign-flag ship. If this civil rights law does not apply to these ships, no other one will.

Ah, let me help you with a way to get around that pesky problem, Justice Scalia indicated to the lawyers for the cruise line. "Why don't you draw that line?" he said, suggesting that because the ADA requires physical changes to the structure of vessels for compliance, there might be some neat way to not discriminate for everything but that which requires actual change. Sell everyone a ticket, and let them sort out who can get up the stairs to where the lifeboats are on their own.

A decision is expected from the court by July.