“Does anyone need
another million dollar movie?
-- Lou Reed, “Straw Man”
Journalist (and crip) John Hockenberry recently wrote that the same critics heaping praise on Clint Eastwood and “Million Dollar Baby” have “failed millions of Americans with disabilities by accepting as utterly plausible the plot-twist that a quadriplegic would sputter into medical agony in a matter of months and embrace suicide as her only option in a nation where millions of people with spinal cord injuries lead full long lives.” Thus, as the Oscars threatened to become a lovefest for Dirty Harry, I posed some questions to Mary Johnson, editor of The Ragged Edge.
“I started a little publication back in 1980 in Louisville called The Disability Rag because one of the big problems locally was you couldn't get crips in one place to do consciousness-raising,” Johnson recalls. The Rag became The Ragged Edge because of a successful anthology by that name and is now totally digital and online only.
A self-described “garden-variety non-disabled person,” Johnson got involved in disability issues in the 70s. “I got hooked,” she says. “What I've learned and seen over the years reporting on this stuff has convinced me that disability rights issues are the quintessential rights issues for this nation. We all face disability issues sooner or later. Hiding our heads in the sand just leads us to the sad conclusion Hunter Thompson drew. Tragic to have that kind of fear.”
Mary replied without hesitation to my questions...but did make one agreeable request: “Let us not bring up Christopher Reeve in this article, okay? I am really tired of him being brought up as the sine qua non of cripdom.”
Mickey Z.: The response of some to the recent suicide of Hunter S. Thompson got me thinking: How is it that the 67-year-old Thompson (or anyone non-disabled who exercises their right to die) can be seen as having “so much to live for” but it's so readily accepted by critics and audiences alike that the character of Maggie (half HST's age) in the film, “Million Dollar Baby,” had nothing to live for?
Mary Johnson: George Tobia Jr., the lawyer who has represented Thompson for the past 15 years, told the Boston Globe that Thompson’s suicide was “definitely not spur of the moment.... He arranged to have things dealt with, and he wanted his family close by, but he didn't want anyone to know. He didn't want anyone to try to stop him....The best explanation, perhaps, is that in recent months Thompson had chronic pain from back surgery and an artificial hip. He also broke his leg on a recent trip to Hawaii and was limping, which made it difficult for him to travel. He didn't want to waste away. He did not want to exist as an invalid or as someone who needed constant care. It wouldn't suit his sense of self.”
The Not Dead Yet folks say: when someone who's not disabled wants to die, or actually commits suicide, everyone thinks it's such a tragedy-but when a quad does it then it's “understandable” and the death is “a blessing” rather than “a tragedy.” No one ever stops to think what this might be saying to the crips who don't decide to off themselves, do they? What it says is that non-disabled people, who control the standards in society, think unequivocally that life with a severe disability is a fate worse than death, i.e. death is preferable. And it also is at the root of all those “brave” and “courageous” monikers that routinely get applied to crips who don't kill themselves, who just keep plodding on.
MZ: What's really going on in all this?
MJ: Cripdom is the big bogeyman in our society today. We non-disabled folks are projecting our own fears about disability onto the people who actually have the severe disabilities. And we can't hear what they say because our heads are full of what we WOULD say/think/do if we were in that "condition." I believe the fear of living with severe disability is far worse than the actual doing of it as, countless quad friends I've had over the years have convinced me. But you sure can't convince the public. If a quad says, “my life is really OK” they're just discounted as being brave or courageous and what they say isn't believed. Talk about dissing someone! To me it's the ultimate form of dissing, and it goes on all the time in regard to disability issues in this country. Non-disabled people always set the terms of the debate. And we must not forget that many, many people who acquire disabilities like Maggie's are simply non-disabled people in paralyzed bodies-they feel the same way about it they did before they'd become paralyzed. It takes a while to sort things out. One of the best recent statements of this fact was written by Canadian Ed Smith for CBC News.
MZ: When I criticized Eastwood's snuff film in a recent article, I was accused of not supporting the “right to die.” Your thoughts?
MJ: People believe it's about autonomy. In my article, “The Scribes Who Mistook The Crips for The Right,” I wrote: “The ‘right to die’ may sound egalitarian; it may sound as though it's about nothing more than choice. In application, though, it applies only to people who are living disabled lives. And the disability rights movement continually returns to this central truth.” “Since virtually all people who request hastened death have old or new disabilities, we're essential to the debate,” wrote the late Barry Corbet, longtime editor of New Mobility. Right to die, and death with dignity laws, Corbet wrote, “are about us.”
Attorney Diane Coleman, founder of Not Dead Yet says: “Many of our allies in the civil rights and health care movements have found this hard to understand. Isn't this about individual autonomy and rights, they ask? No, we say, it's about disability discrimination, a profit-oriented health care system, and a legal system that does not guarantee the equal protection of the law.”
Or, as a sticker for sale from Mouth Magazine says, “I support the right to die. You go first.”
MZ: What about the concept of “assisted suicide”?
MJ: Actively helping someone end their life is illegal in every state. But laws permitting a doctor to provide lethal medication are being contemplated in California, Vermont, Hawaii and Arizona (such a law is in force only in Oregon.) Proponents insist safeguards exist. But those safeguards, says Harriet McBryde Johnson, whose articles have appeared in the New York Times Magazine, “are about defining a class whose desire to die may be presumed rational, because of illness or disability so ‘bad’ that no ‘reasonable’ person would want to endure it.” Right to die laws, says Johnson, have “the power to validate and structure prejudice -- to tell suicidal newbies that yes, it really is as bad as it feels, and don't expect it ever to get better. They tell the larger society that disability and illness equal misery, so there's no need to bother about making our lives good. There's an easy way out.”
MZ: Tell us more about Clint Eastwood's history, vis-à-vis disability rights?
MJ: The disability rights movement has never forgiven Clint Eastwood for his celeb blitz against the ADA in the spring of 2000. His campaign was heralded by a May 9 article on page 1 of The Wall Street Journal by reporter Jim Vandehei (“Clint Eastwood Saddles Up For Disability-Act Showdown”): “These ‘sleazebag lawyers,’ the veteran actor says, his voice constricting, messed with the wrong guy when they ‘frivolously’ sued him and hundreds of other small-business owners for failing to comply quickly enough with the Americans with Disabilities Act. Mr. Eastwood...is striking back with a Washington lobbying campaign for new legislation to modify the law. ‘I figure I won't back down because of all these people...who can't defend themselves.’”
Eastwood had been called in by Rep. Mark Foley who was pushing a bill called the ADA Notification Act, which would require crips who were suing access violators to give the violator 90 days' notice before suing them (no matter that the business had had since 1992 to correct the violations). The disability rights movement unilaterally opposed the bill, and ultimately succeeded in keeping it from moving out of committee that year-but the bill keeps re-surfacing in every session of Congress and I'm sure a version will be re-introduced again soon. California has just had a state version introduced.
In the week between the May 9 WSJ article and the May 18 hearing, Eastwood took part in a media blitz against the law. One sound bite got picked up a lot: “What happens is these lawyers, they come along and they end up driving off in a big Mercedes, and the disabled person ends up driving off in a wheelchair.” It was designed to sound as though he wasn't against the disabled (nobody is ever openly against the disabled-note Clint's current remarks in the “Million Dollar Baby” flap) but the “money-grubbing lawyers.” So the real story never did get out. The May 18 hearing had reporters there in droves to listen to Eastwood's statement. Their jam of microphones and cameras had forced many disability rights advocates to remain out in the hall-but as soon as he'd finished, they all left. Naturally, he got to speak first, being a celebrity whose time was valuable. His complaint to the committee was, naturally, about the attorneys: "In my opinion they are perverting the law by going around and filing these broadside, sand-bagging type suits where they hit you broadside from nowhere, with absolutely no warning. “I was hit by one in an old hotel I was trying to restore” -- he was referring to his Mission Ranch resort – “just on an allegation that somebody was there, and a year earlier they had been denied access. They waited a whole year to file this suit. They claimed that some employee told them that we did not have handicapped bathrooms. Well, the truth is we did have handicapped bathrooms. But once they file a suit on you, they keep adding everything. Every time they come back they keep upping the ante, adding many more problems to be solved which they can collect fees on. And it is really not very fair.”
MZ: What happened after Eastwood and the media left?
MJ: The real story began to emerge. Ragged Edge reported on it in 2000 and you can read some very good comments from disability activists about why a “Notification Act” was such a terrible idea here.
The real clincher was the testimony of Fred Shotz, an ADA consultant. Shotz testified: “I reviewed photos of Mr. Eastwood's Mission Ranch, and was able to read the entire inspection report by the plaintiff's consultant in that lawsuit. All it said are the violations; not violations of an old building that people want removed, but the new steps that got built so that people in wheelchairs could not get up, because with the steps came no ramp; the restroom removed from the building to enlarge the public space, or the restrooms being placed over 200 feet away from that building. If you are not disabled, restrooms are just around the corner.”
Eastwood was forced to admit that he was being sued under California's access law as well as the federal law, and it was the California law that allowed plaintiffs to sue for damages. None of this got reported either. There's a neat Quicktime tape on our website of these snatches of the hearing (it's about 10 minutes). It's linked from here.
That fall, the trial Eastwood alluded to occurred in San Francisco. At its end, the jury noted that Eastwood's Mission Ranch had indeed broken the law. There was no ramp to the registration office. An “accessible” guest room wasn't. No signs pointed to the accessible public restroom. All were violations of the ADA and California law. However, Eastwood, standing before the cameras outside the courtroom, declared victory. The lack of access was a mere technicality: those “improvements” were already in the works. It is true that the jurors did not award the plaintiff the money that California's Unruh Civil Rights Act would have granted someone who had suffered as a result of access denial. It was the state law, not the ADA that allowed for damages anyway. So Eastwood crowed to reporters that he had “won”. He made light of the fact that it was the lawsuit that had impelled him to finally provide the access. He also failed to say that in making his choice to fight the charges, rather than simply comply, he had paid out tens of thousand of dollars to his own attorneys (which, evidently, were not “unscrupulous” ones). “If you're right, you've got to hold your ground,” Eastwood told the San Francisco Chronicle. “I also fought for the businessmen and businesswomen who own small businesses who are trying to get by and they get worked over by those people.”
It is a sad but typical note that the federal courtroom in which the Eastwood trial took place was not accessible, either. People in wheelchairs had to be brought in through an exit door. Neither the witness stand nor the jury box was accessible. “Court officials had to remove a bench to allow room for observers in wheelchairs,” said the Chronicle.
MZ: Why have progressives/radicals been so hesitant and/or resistant to aligning with the disability rights movement? It seems like a natural fit.
MJ: This is a theme I seem to return to over and over, for it is very painful for me-and for most of the disability activists I know-to realize that progressives are rarely any better on our issues than conservatives, and sometimes actually much worse. The concepts of individual rights and an egalitarian society, concepts that drive disability rights thinking, are borrowed from liberal ideology, and most of the activists in the movement today come from backgrounds in the civil rights, women's rights, anti-war movements of the ‘60s and ‘70s. Yet, get any group of disability activists together for more than a few minutes and you'll start hearing the familiar griping about how liberals don't "get" disability rights.
In my book, Make Them Go Away, I keep coming back to this theme. I wrote that free-market conservatives were against disability rights, but that could have been expected; but that what was not expected was that almost no liberal groups spoke out in support of disability rights.
Most liberals and progressives believed that the problems racial minorities, women, and gays faced were the result of animus, the work of a discriminatory society. When it came to disabled people, though, liberals’ views were similar to those of the anti's. They believed disabled people faced essentially private, medical problems rather than problems of discrimination. What a disabled person needed, they felt, was medical intervention-a cure. Lacking that, they should be given help, through private charity or government benefits programs. Almost everyone instinctively felt that "rights" was simply the wrong lens through which to view the disability situation.
This concept-that disability belongs to the realm of the private, not the political-was noted originally by disability scholar and historian Paul Longmore. I think he's right on the money. But equally important is the belief that “no one is against the handicapped” -- that no animus is involved. Completely inaccurate, but people cling to this belief, even crips. It's probably the biggest obstacle to organizing. At least when you're gay, you know folks hate you. That's empowering, actually, within your own community. Crips have “no enemies” thus no reason to form community-this is the most pernicious thing going for the crip nation (which doesn't exist, and this is why).
MZ: What is the biggest myth you'd like to dispel about disability rights?
MJ: That the problems disabled people face are primarily caused by their disabilities, and that nobody is against the handicapped (I know, that's two). The truth is that the real problems a disabled person faces are caused by a society that refuses to see the condition of disabled people as being a result of bigotry, discrimination, and flawed social policies emanating from the belief that nothing can really be done for a disabled person if they can't be cured or made "better" physically. In fact the struggles that most disabled people face that make life unbearable have to do with not being able to hire decent attendants (no money; no program to pay decent wages) housing you can't even get out of, buses you still can't ride, employers who still don't want to hire you. If you don't read any other link I've provided, do read this one. It's an article by a crip who writes for Toronto Now alternative paper, about the problems he's had with having someone come in and help him bathe and dress. These kinds of things, happening daily, over and over, to quads everywhere, are the real reasons people get discouraged sometimes and think of suicide, but as one should be able to tell from Shupak's article, the problem here isn't being disabled, per se, but the conditions under which society forces crips to live. A fine distinction, but a vital one. Why do we keep missing this?
These kinds of things are easily within society's power to change. Unlike The Cure, which is elusive (and people rarely take time to realize that the cure for spinal cord injury isn't going to help me if I have ALS; that the cure for ALS isn't going to help me if I have osteogenesis imperfecta), providing decent in-home services is very much within the power of society to do. If only the political will were there. But rather than take up this issue, liberals would rather worry about guaranteeing the Right To Die. Funny, eh? It would be if it weren't so tragic.
For more on Mary Johnson, please visit: www.raggededgemagazine.com
Mickey Z. is the author of several books and can be found on the Web at: http://www.mickeyz.net.
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