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What about Christopher Reeve?

Read Steve Drake's review of Million Dollar Baby

Read Art Blaser's review of The Sea Inside

Clint Eastwood's Million Dollar Baby has scored 7 Oscar nominations, including Best Picture and Best Director. Alejandro Amenábar's The Sea Inside has come away with two, including Best Foreign Language Film. Both films romanticize killing a paralyzed person who has asked to die. Both movies are dangerous. But not, perhaps, for the reason we might think.

We need to talk!

by Mary Johnson

EDITOR'S NOTE: This somewhat longer version of the article originally posted here was revised and expanded 1/28/05.

Alejandro Amenábar's The Sea Inside is the real-life story of Ramon Sampedro's crusade to get others to help him end his life. Clint Eastwood's Million Dollar Baby ends with young boxer Maggie, now paralyzed, getting Frankie's help in ending her life.

No national conversation about disability exists to counter the ideas these movies carry. That's what makes them dangerous.

Are these movies dangerous? Yes they are, as long as no national conversation about disability exists to counter the images and ideas they carry. It is not the presence of the films so much as the lack of a credible counter understanding that creates the danger.

We do not have, have never had, and seem incapable of having, a realistic national public conversation about life as a severely disabled person. Thus we have no understanding -- and no real way to achieve an understanding, much less a social consensus -- about what life with a severe disability should be like. And so we have no way to really understand -- no way to believe, as a society -- that it is all right to be disabled. We have no social consensus that it's all right to live with a disability.

More than that, though: we don't seem to have a clue how to get to such a social consensus.

These movies, more than anything, emerge out of that lack of understanding. Movies like these will continue to be made until people are given a way to understand that it is all right to live as a disabled person. Not heroic, not tragic -- simply all right.

Another way of putting it is that these kinds of movies will continue to exert a hold on people until we as a nation come to understand the thinking and feelings of our disability community. But we have a lot of talking to do before we get there. Most people haven't a clue, even, about what the term "disability community" might mean.

Clint Eastwood has a right to make the movie Million Dollar Baby. He has a right to portray Maggie as wanting to die after becoming severely disabled. The film does play fast and loose with the details of her killing. But to focus on that as the problem would be a mistake. That is not where the real problem lies.

Eastwood's Baby is the adaption of a short story of the same title from F. X. Toole. It was Toole, not Eastwood, whose plot had Maggie wanting to die, and Frankie killing her for love

Toole had a right to publish his story, too.

Should we condemn Toole for his story? Or condemn Eastwood for bringing the story to the big screen? Activists are saying that by giving this story major national play, Eastwood has shown his contempt for disabled people.

Many would say that Clint Eastwood has contempt for disabled people -- at least the ones who sue for access. Like most of society, though, he likely has no real problem with meeker crips, those who we in the movement refer to as "good cripples."Some of Eastwood's best friends no doubt have disabilities. If furor over Baby rises to the level of national consciousness, national news will likely focus on how nice Clint is to disabled people,with quotes from his disabled friends testifying to his righteousness.

These things miss the issue, however.

Society needs to talk -- really talk -- about what it is that makes life unbearable when you're severely disabled. This conversation, a public one -- which means news articles and TV shows and Oprah and letters and columns, really focusing on back and forth -- would need to go on for years, as the conversation about gayness has gone on for years, and the conversation on race has gone on for more than a century.

The closest we have ever come to having a national public conversation about life as a severely disabled person was when we as a nation talked about Christopher Reeve. In truth, it was not much of a conversation. There was generally only one side to it, which pretty much ran along the lines of amazement and adoration of Reeve, who became "the most famous disabled person since Roosevelt," as Time Magazine's Roger Rosenblatt once put it.

Christopher Reeve told the nation that a severely disabled person wants to be cured, above all else.

We were mostly projecting our own ideas about disablity onto Reeve. Being an actor by trade, he took on those projections and lived them out, perhaps not even fully conscious of doing it. Put another way, he observed his own publicity and played to his audience, as any skilled actor will. People loved him because he fulfilled their beliefs about what a disabled person should be.

Let's look briefly at those beliefs.

From Reeve, we got the story that a severely disabled person wants to be cured, above all else. Reeve, functioning in a kind of savior role, was working tirelessly to help all other disabled people -- that is, he was seeking a cure. Reeve's story, endlessly told and retold first in his two bestselling autobiographies ( then in tv specials and books and articles about Reeve), also told us that it is normal for anyone who becomes severely disabled to want to die. It did, it is true, go on to tell us that with the love of family and a strong will, one gets past that and goes on with life.

After this, though, the message fills with static: we don't really get any clear message after this. Reeve's public story, unfortunately, was not about much more beyond cure.

"People say to me, 'why don't you give up on that [cure business] and work for better conditions for people with disabilities? Work harder for the ADA, bring up people on charges who fail to meet the [access] codes?' " he told Sam Maddox in an early interview for New Mobility. "I can't do both effectively, in my opinion," he'd explained.

He was quite likely correct. But his decision to focus on the cure message meant that most of America has come to believe that cure is the message about disability -- that there is nothing else to talk about.

Because Reeve's public conversation about disability -- the only one most people wanted to have with him or knew how to have with him, the one that would get him media attention -- was about cure, it didn't touch on the other million things that plague the average severely disabled person and makes them, yes, sometimes wonder why they must continue to live, and, less often but often enough (witness Ramon Sampedro of The Sea Inside) make active efforts to end their lives. And so we have never learned much about these other issues, even though, in truth, they loom far larger in the lives of disabled here and now than does cure, which is always around the next corner.

Most of "what makes life unbearable" when you're disabled is related to things other than not being able to move one's body. But before we can understand this, we must be able to talk about what these other things are. We must be able to have very public conversations about them -- in a way, and with a focus, that is scarcely imaginable today.

Let's make a start, though.

The lack of decent personal assistance makes life unbearable for many paralyzed people -- not being able to command it, direct it, be in charge of it. Not being able to find any. Not being able to afford it. This assistance -- with things like dressing, bathing -- is something paralyzed people should be able to get as a matter of course, much as one can pay for having lawncare done, or a pizza delivered, at a reasonable price.

The things we in the movement take for granted about the disability experience are simply unknown to the public at large.

By and large, though, the kind of competent personal assistance services paralyzed people would like simply doesn't exist. One has to rely on a family member to help, out of the goodness of their heart. Or try to hire someone from a "health care agency" -- and submit to their rules. Or try to get help from some public program. Or move into a nursing home, which is always the looming option.

Living in an institution --the one option that is always available (and why is that? That in itself should be the subject of another long-running public conversation) -- is truly a bleak prospect. Had Eastwood wanted to get it right, he would have made living in a nursing home the real downer for Maggie. But because the people involved in the creation of Million Dollar Baby, from author F. X. Toole to scriptwriter Paul Haggis to director Eastwood, know nothing about the disability community, it likely didn't occur to them that they hadn't gotten it right. It is typical for a nondisabled person to imagine what they would feel if they did become disabled, take it as truth and probe no further. Thus most people seize on the disability itself as the horror.

But really it's the difficult (and usually resolvable, with money) problems of getting along in life that pull at most disabled people who become undone and seek death: the feelings of being a burden, of being in the way. It's the wearing down that occurs upon hearing, again and again, that businesses do not want to bother with access, that employers resent providing accommodation.

After the initial injury and rehab, it's the issues like the need for day-to-day assistance and the ubiquitous presence of day-to-day barriers that prevent one from getting out and about, rather than the not-being-able-to-move, that take over in the fear and loathing department for a severely disabled person.

And yet we have virtually no national conversation about these day-to-day real and daunting issues that consume disabled people's lives. Since we do not publicly discuss them, we as a public do not seek solutions for them, either. Yet unlike cure, these are issues whose solutions can be readily found, and easily achieved. All that is lacking is public attention and national will.

A newspaper or a TV news program will focus on the latest nursing home abuse scandal, then the issue will sink silently below public consciousness once again. We will not talk about the high cost of in-home services, the scarcity of people to do personal care work, the medicare and medicaid bias toward payments to institutions rather than to people to hire their own help, in their own home.

Routinely there are reports in the media about special transportation services for disabled people. The same reports, always: of van transport programs hopelessly unreliable, which take 2 weeks to reserve, which fail to arrive; which, having arrived, keep their passengers riding for 3 hours to get to a destination 20 minutes away. Investigations ensue, promises are made. Nothing changes.

Stories appear from time to time about people living in institutions because they can find no housing able to accommodate their wheelchairs. Other stories tell of new homes being built here and there that are wheelchair friendly, that one can move about in, in and out of, without having to be lifted up steps or helped through a too-narrow bathroom door. No editor ever seems to connect the stories. The real estate listings do not bother to concern themselves about access. It is not, after all, a public issue.

We do not have any national conversations about any of these things. None of them ever rises to the level of public attention that movies like Baby and Sea do.

Community, not cure, is the antidote to the despair that leads to death.

We have had one public conversation about disability in this country. That's the conversation around disability rights law. Not disability rights, but disability rights law. This conversation, one Eastwood has been quite vocal in, was initiated by those opposed to disability rights. It's focused on the Americans with Disabilities Act (and, by extension, state and local disability rights measures) This conversation, a pretty much one-sided one, is about how disability laws hurt businesses, how they intrude and cost money, how they in fact harm the disabled themselves. Some of these points formed Clint Eastwood's sound bites when he mounted a media blitz to weaken the ADA in the spring of 2000.

This conversation does not help people live their lives, either. Rather, it tells them that they are bothering business and society when they seek rights and access. When people look to end their lives, it would be useful if we could wonder how much of that is because they feel they are no longer welcome in society. That they are told, by the presence of barriers (which are illegal and would have been removed years ago had the business wanted to bother obeying the law), that they are not wanted in public.

The movies would pose little danger were there enough of a public understanding of life with disability to disarm them. They likely would never get made. But because we do not talk about disability, there remains a void into which people can and do fall when they become disabled. And it is inside this void that the "right to die" sings its siren song.

If we want to understand the trajectory which we need to follow in order to change things, we can look to the gay rights movement.

No matter what your beliefs about gay rights, you can't deny that in the last half century there has been a sea change in public consciousness about the lives of gays and lesbians. One can also not deny that homophobia remains a strong force in society. Be that as it may, the fact is: gay rights issues -- gay issues -- have become public issues. Not only do we know that people are against gay people and gay rights, but we know that people are for gay people and gay rights as well.

Why is this significant? It is significant because, to a person who is gay, it tells them that in some places, among some people, gayness is acceptable. Not everywhere, not among everyone. But it signals that a community exists. And community, not cure, is the antidote to the despair that leads to death.

The idea of a "disability community" is alien to most people -- including most disabled people, including most paralyzed people like Ramon Sampedro -- and most certainly to people like the fictional Maggie, because of course, it is alien to her creators. But it exists, and it is from the disability community -- and ultimately, only from the disability community -- that a disabled person can learn that it is all right to be disabled. Without a way to see and talk about the disability community, though, we have no way to really understand -- no way to believe, as a society -- that it is all right to be disabled.

Before we will ever get to a public conversation about the nation's disability community, and its ideas and vision, we will have to have those other conversations -- the ones about what makes life unbearable when you're disabled, the ones about the lack of assistance, the lack of access, the lack of housing, the lack of accommodation, the lack of respect for disability rights laws. And we haven't as yet even started on these conversations. So it's going to be awhile yet.

Meanwhile, Ramon Sampedro sings the siren song of death.

As yet we don't have much that the public knows how to talk about to combat it.

That is why these movies are dangerous.

Posted January 23, 2005

Read Mary Johnson's Killing Us Kindly

Mary Johnson edits Ragged Edge. Her latest book is Make Them Go Away: Clint Eastwood, Christopher Reeve and The Case Against Disability Rights.

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