Looking back at the disability press and its coverage of the FDR Memorial and Chris Reeve’s post-injury politics, there’s clearly a different perspective of these famous disabled men than the mainstream media presents. The topic of stereotypical representation of disability by the media and newly-disabled celebrities themselves rather than news about disability rights ignites activists to raise their voices. Each of the following links (save, perhaps, the last one) are worth reading in their entirety.
FDR
After the FDR Memorial in Washington, D.C., had been unveiled, there was an outcry from disability organizations that the wheelchair Roosevelt used daily all through his presidency was nowhere visible. A 1997 article in Ragged Edge (then called Electric Edge online, since the ‘zine-like print version of Disability Rag was still available) questions “FDR: Rolling in his grave?” :
The controversy among crips is this: Is it great that NOD [National Organization on Disability] is calling Roosevelt a hero for crips, and using him as what one person called a “‘culture icon”? Or is it misplaced praise for a man who really went to great efforts to pass as non-disabled?
“It is important to Americans with disabilities — and important as a symbol of how American society perceives its disabled people –that the Memorial depict the man as he was: tall, strong, heroic and disabled. Don’t let them steal our hero!” Hugh Gallagher, author of FDR’s Splendid Deception, has said. He has been liberally quoted by supporters of the NOD campaign.
[Blind reporter Kathi] Wolfe worries that the effort to turn Roosevelt into “a crip icon just because he was a crip” contradicts history. “He wasn’t a disability hero,” she insists. He wasn’t “a crip advocate like Helen Keller, who worked to better conditions for blind and deaf-blind people and veterans who had disabilities — as well as being a feminist and against racism.”
Here’s the Congressional hoopla that led to adding a statue to the Memorial depicting Roosevelt in his wheelchair. It was a rare triumph that the voices of disabled people were heard and effected change, though likely the biggest reason for their success was Roosevelt’s political history of serving oppressed minorities. That aspect of his personal history tipped the scale to support people with disabilities.
Chris Reeve
Along with instantly becoming the most famous, most quoted disabled person on the planet, Chris Reeve was always a lightning rod for political controversy and frustration among disability activists.
In letters to the editor of Electric Edge, readers vent about Reeve:
Due to his high profile, it’s no surprise that much ink is devoted to Christopher Reeve. Our world has collided with that of an A-list celebrity in a way that we could never have anticipated, so it is inevitable that we react to him in the Rag, Mouth, Accent, and all of our other usual forums.
Readers themselves may have witnessed or experienced firsthand the myriad thoughts and emotions in the two or three years immediately following such a massively imposed change as is caused by a spinal cord injury. In the clinical model, there are textbook pages written about a pattern of denial, anger, and depression. Christopher Reeve is, so far, the most powerful, influential person to go through this experience. All his talk of The Cure is nothing new; convert gimps have been singing this tune for years. His use of this crap is now drawing the attention it craves because he’s the one saying it. We’re all horrified because he can undermine the life work of hundreds of advocates in just one speech.
Writing about her 1996 experiences as a South Carolina delegate at the DNC, Harriet McBryde Johnson was on the floor when Reeve addressed the Convention:
They’ve been building up to tonight’s major prime-time speaker, and now they’re introducing him: Christopher Reeve. When the introduction ends, the hall lights are dimmed. Onto the stage he rolls and then sits, gleaming under a dramatic spotlight. The crowd is on its feet, wild with welcome, with excitement, with awe. Yes. They’re awed by the mere sight of this man sitting, smiling, looking around. He hasn’t said a word and they’re going crazy. It’s real. There’s no prompting from the DNC staffers.
I’m in the middle of 60,000 drop-jawed souls, witness to a late 20th-century Pentecost. Physically, Reeve is way above the 60,000, isolated by that spotlight. Symbolically, he’s the object of devotion, not a member of the fellowship. As Reeve and the crowd are having their communion, I feel completely out of it.
He’s speaking now. I try to listen, but things have become surreal. I look up at Reeve.
I look up and I see … a ventriloquist’s dummy.
How could I think such a thing? I’m horrified. If these worshippers knew my thoughts, they’d tear me up and throw me to the dogs.
I tell myself Reeve’s playing out the very peculiar drama of his life the best way he knows how. He’s being used, but what can he do? This is a new role for him. He has no script.
But, there he is, Charlie McCarthy.
Where is this image coming from? No quad I’ve ever known has impressed me this way. I’m pretty quad-like myself. Maybe it’s the staging that objectifies him. Or maybe it’s the contrast between his persona and the physical vigor we expect on the podium of a national political convention.
No. It’s the face. That smile running from ear to ear. The face is commonly considered animated, but I see something … wooden.
I’m warmed by the sudden sunburst of TV lights; a camera crew is setting up. They want the crip reaction to Reeve’s speech.
“Beth, can you block me?”
She stands between me and the camera. The crew establishes a new sightline and she leans right into it. They call someone on their cell phones.
Reeve’s measured syllables are perfectly timed with his mechanical puffs of air. The pauses make what he’s saying seem important. Even in the dim lights I can see the faces in the crowd, transfixed by the sight of him, fascinated by the sound of him. The gleaming presence. The ventilator whoosh. The body propped up in dress-up clothes.
The camera crew realizes that Beth’s not going away. They load up their gear and head elsewhere.
Moments later, there’s a woman in a wheelchair on the giant TV screen in the rafters. She’s scowling. Quick cut to a nondisabled white woman, tears streaming across a smiling face, backlit to highlight her moment of inspiration. The lights pick out a variety of delegates. White, black, old, young, male, female. Everything but crips.
It’s melodrama. The kind of Telethon melodrama I tried to ignore in my childhood and youth, tried to ignore until finally I got angry enough to put up a picket line. How could they bring the Telethon here, to a national political convention? This is my party. How could they do it?
The speech ends and the lights come on. As emotion runs through this vast arena, I’m left cold. I can’t possibly feel what they feel. Now they’ll want to see me the way they see Reeve, a disability object, presumably tragic but brave, someone to make them grateful they’re not like us.
I tell myself I’m overreacting, but I’m almost shaking when I join the line at the elevators. A misty-eyed stranger kneels down beside me and clutches the hand I’m trying to drive my chair with.
“Wasn’t that just wonderful?“
“No,” I blurt out, “it wasn’t at all wonderful. I thought it was pretty bad.”
“Well, I thought it was wonderful.” She springs up and pivots away with an angry shoe-clop on the hard floor. How dare I refuse to be inspired?
On the bus ride back, everyone rhapsodizes about how inspired they are. Gone is the usual friendly chitchat. I stare at the black floor mat and withdraw from the group that has set me apart.
We get to our rooms, way past ready to collapse into our beds, but there’s a blinking light on our phone. A message from Mike Ervin: “Hi. Some people from Chicago are having a press conference tomorrow to deal with the Christopher Reeve, er, problem … “
Beth writes down the details. We’ll be there.
Continuing in Part II, Johnson describes the disability rights media response:
Christopher Reeve’s speech has left us with a problem. By putting him up on the podium the way they did last night, the DNC has fed–and fed upon–the harmful disability stereotypes I’m here, in part, to fight. When I arrive for the disability caucus and find the gang from Chicago outside the door passing out flyers, I’m overjoyed. The flyer, by Mike Ervin and Anna Stonum, deals pointedly with Reeve.
Local TV news shows up. They shoot video of the group and then zoom in on my red delegate badge, proof of my authenticity as a genuine Democrat from the Deep South. Up here, I guess, I’m exotic. They set up lights. Mike and I agree to talk.
There’s a lot of noise and I can barely hear what Mike’s saying. Is he really calling Reeve a whiner? No, not exactly, but close. I think Mike might be going a bit too far, but a wave of gratitude washes over me. He’s a champion who’s fighting not Reeve but the people who put him on that platform.
Another 1997 Electric Edge article asks about Chris Reeve “What’s it gonna take?” Here’s writer Pat Williams:
Some gimps I know say, “give Chris Reeve a break! He’s new to gimpdom. He doesn’t realize there’s more than Cure out there.” These gimps want to believe that after Reeve’s been a gimp for a few years, he’ll get on to disability rights; he’ll speak out on the importance of access, attendant services, all that.
But I don’t buy that. I think Reeve knows exactly what he’s doing. He knows you can’t talk about cure on the one hand and access on the other; he knows people see them as contradictory. He was drawn to the American Paralysis Association, he said, because “they are dedicated solely to finding a cure for paralysis, nothing less. I liked that idea,” Reeve went on. “They’re not into lower sidewalks and better wheelchairs.”
“Suppose Chris Reeve were Barney Frank”:
Suppose he wrote an autobiography about seeking a cure for his homosexuality? Suppose he started the Barney Frank foundation to cure homosexuals? Suppose he held a television special to raise money to find a cure for homosexuality?
Suppose Barbara Walters interviewed him on 20/20 on his work to find a cure for homosexuality?
Imagine it.
A 2000 Ragged Edge response to Reeve’s Superbowl ad where a digitally manipulated Reeve got out of his wheelchair and walked:
With an unemployment rate of over 70%, the vast majority of people with disabilities could not begin to be considered consumers of this product. But the ad was not created with the disability market in mind; its target was people with money. It unabashedly pulled at heartstrings with an in-your-face, no-holds-barred “disability is bad” message. In the tradition of Jerry Lewis, this ad meant to bring tears to the eyes of football fans during their favorite game, courtesy of the incredibly courageous former Superman.
The ad may have done more damage than Jerry himself: unlike the telethon, this “disability is bad” message aired during one of the year’s most watched TV events. Nuveen paid $4 million for that minute of airtime.
At the same link, several disability activists speak out. Paul Longmore:
“The opportunities in this new world for people with disabilities have not been created by technology alone. They are the result of several generations of intensifying disability rights activism that has won passage of laws protecting us from discrimination and guaranteeing us access. . . . We need to ask why society keeps giving Reeve platforms to propagate his views but excludes the disability rights perspective.”
Tom Deniston of Accessible Design Associates:
“If I had pulled a Christopher Reeve 30 years ago, none of at least 1,000 buildings would be accessible today.”
Charles Krauthammer:
“In Reeve’s view, reality is a psychological crutch. His propaganda to that effect undermines those — particularly the young and newly injured — who are struggling to face reality, master it and make a life for themselves from their wheelchairs.”
New Mobility editor Barry Corbet writes:
Alas, poor Christopher Reeve. He can do no right.
In his quest for cure, he’s been roundly criticized by a large and vocal sector of disability activists for obscuring our core message of rights, equal opportunity and dignity.
Alas, poor Christopher Reeve. He can do no wrong.
In his quest for cure, he’s raised millions of dollars for research, elevated public awareness for all people with disabilities and brought hope where once there was none. He’s become Saint Christopher and there’s not much his detractors can do about it.
Ted Gilmer’s 2002 New Mobility interview with Reeve presents a detailed picture of the man and his advocacy while also subtly showing how alienated he is from the average quadriplegic’s life.
In 2003, Mary Johnson’s book Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights explains how Reeve’s efforts dangerously undermine disability rights.
In a less critical 2004 article about his death Ragged Edge editor Mary Johnson notes:
We are awaking today to a week in which we will read and hear all sorts of encomiums to Christopher Reeve the actor, the brave man who kept on in the face of tragedy, the man who became an icon for stem cell research.
What we will not hear are tributes to the man who changed America’s understanding of disability discrimination, who put a face on the problems this country causes wheelchair users by the persistent denials of access and accommodation.
Had he lived, Chris Reeve might one day still have come to symbolize to the American public the fight millions of us must wage in order to get out of institutions, into homes of our own, into jobs, into the public environment. Many of us wanted to believe he would someday embrace the rights issue much as he had embraced, as a nondisabled man, many progressive causes.
The Need to Critique
I’ve been getting a lot of heat for daring to criticize Andrea Dworkin’s public writing about disability. Thinking critically about who the widely disparate disabled are and how we’re portrayed isn’t something I decided to play at just to “slam Dworkin.” It’s a long-term project that includes looking at literature and film too. I didn’t have a blog during the FDR Memorial issue or until the very end of Chris Reeve’s life, but I did write a letter to the editor of my college paper about the Memorial:
This letter is in response to the Tuesday State Press editorial stating that FDR should be remembered for his deeds, not his disability. While this newspaper has certainly made more blatant errors recently with regard to group stereotypes, the editorial speaks to the lack of support for diverse groups and their experiences.
It was widely known during Roosevelt’s time in office that he used a wheelchair, and buildings all over Washington were equipped with ramps so he could come and go. These ramps were all removed when he died, attesting to the fact that because his disability was hidden, the access needs of other disabled Americans remained unacknowledged for a couple more decades. No, Roosevelt did not want himself portrayed in a wheelchair, but neither did he want any kind of memorial in his honor. We already have the memorial; now the challenge is to depict Roosevelt honestly and in a way meaningful for future generations.
The history and experiences of other stereotyped and marginalized groups have not emerged without struggle. Recognition of both contributions to society and discrimination from society have been hard won for African Americans, Native Americans, women, gays and lesbians, etc. While the editorial board acknowledged that people with disabilities are often pitied and patronized, they fail to truly examine Roosevelt as a president with a disability. He chose to hide his disability because of discriminatory attitudes. As President Clinton has said: “He knew it was necessary at the time because he knew he had the capacity to be president, and he didn’t want some artificial perception to keep him from being president.”
In addition to Clinton, former Presidents Bush, Carter, and Ford — as well as 16 of Roosevelt’s grandchildren — support a statue depicting him in a wheelchair. History does not change, but what we see as important about our past continues to evolve. Who our heroes and role models are for the future has thankfully expanded. As the editorial states, “FDR was an inspiration to many,” but perhaps not “regardless of his physical state.” Perhaps his experiences with polio are part of why he was so great, and why he could say “We have nothing to fear but fear itself.”
Incidentally, the new statue would not cost taxpayers a dime. The National Organization on Disability has pledged to raised the necessary funds.
And Reeve is mentioned anecdotally throughout this blog.
There aren’t many famous disabled people because disabled people don’t get enough media coverage to be recognized as the political activists and political writers they are. It ends up being famous people who become impaired and thrust into a brighter spotlight that society views as our spokespeople — mostly spokesmen. Without criticism of their unwitting role in our continued oppression, their stereotypical messages go unchallenged. It’s not enough to critique the media when the public turns to these celebrities, the roles of the celebrities must be examined too.
Crossposted on The Gimp Parade
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The main problem I have with this post is that it assumes a conflict between advocating for Tha Cure on the one hand, and advocating for an end to discrimination and the removal of bariers on the other hand. Reeve did not like being disabled and wanted to use the attention focused on his disability to advocate for a cure: Why should anyone else criticize this decision? Disabled people should not be expected to hate their lot in life an spend their days longing for a cure, but niether should they be expected to be happy people satified with themselves who seek only to make others accept them for who they are. Each disabled person reacts to their disability differently, and both the Reeves reaction and the DRA reaction seem to be positive responses to me.
Is there legitimate criticisms? Yes. To the extent that Reeves put down the DRA reponse, he can be criticised on the same grounds for which I am criticizing DRAers who criticize his approach. More importantly, society and the media can be criticized for emphasizing only one type of response over another, or for assuming that any disabled person speakseither for all or most disabled people or the “disability community”. In my experience, while there is a disability community, most disabled people are not part of it and do not want to be – and here I am not talking about simply not wanting to be disabled, I mean they have no particular interest in either their social life or personal identity being centered around their disabiltiy.
Most members of what could be called the disability community are DRAers. Advocating for group rights is a natural outcome of forming a group, and the focus of DRAers is positive and neccesary. But the disbility community should not presume to speak for all disabled persons anymore than a particular disabled person should presume to speak for the disability community.
To respond to the analogy of a “Barney Frank foundation to cure homosexuals”, let me propose an analogy: Consider people experience social and psychological pain because they are psychologically feminine but biologically male. There are three possible solutions:
1. They can attempt conseling and personal growth to become more psychologically masculine.
2. They can have surgical operations and hormone therapy to become biologically female.
3. They can attempt conseling and personal growth to accept and be comfortable with being a feminine person in a male body.
Now, I personally do not believe that any one of these choices is “wrong”, nor would I criticize anyone in such a position for advocating any of these as a way to deal with their situation. #1 is the most problematic, as it conforms to society’s expectations, and could therefor be seen as a pasive attack on #2 & #3, and so I might want a person advocating that one to declare at reasonable intervals non-oposition to the others, but I do not see why a person avocating for either #2 or #3 should be criticized for not spending time extoling the virtues of either of the other two.
I guess, applying this analogy, I can see how Reeves’ advocacy conformed to society’s prejudices more, and it might be legitimate to criticize him for not acknowledging the neccessity of disability rightd periodically. But I still cannot see that he should be criticized for not making disability rights his focus, or for spending his entire life as a disabled person advocating and hoping for The Cure.
By DRAers, you mean disability rights activists?
In my experience, while there is a disability community, most disabled people are not part of it and do not want to be – and here I am not talking about simply not wanting to be disabled, I mean they have no particular interest in either their social life or personal identity being centered around their disabiltiy.
I’d agree with this, except that while some have no interest in either the social life (?) or personal identity, some don’t even know there are a group of people out there that they might really relate to and have political goals in common with. I think most disabled people are very isolated from other disabled people. And when they do meet up, the societal idea that disability is all negative makes them ashamed to make a positive connection through that identity.
FWIW, I don’t find the Barney Frank analogy to be a very accurate one, it’s part of a piece showing the tradition of critiquing public figures with disabilities who don’t speak for all of us. But it does present something interesting to think about.
Imagine the black civil rights movement only having MLK, Jr. and not Malcolm X too, or feminism having Susie Bright without Dworkin. It would really skew the perception of what those political groups want and need. Having only Reeve is/was the same way. It’d be a great luxury to have the media’s attention on disability rights enough that there didn’t need to be some inaccurate binary division of what such a diverse group of people want, need, and are about.
I’m not up to speed on all of this, so I’d appreciate a hand understanding the controversy.
From looking over some of this, it seems that
1) Christopher Reeve, having become disabled, put a lot of effort into raising funds for a cure for his disability.
2) He put no effort into trying to change laws and culture to make our society more compatible with the needs of disabled people.
3) There are a number of eloquent disabled people who are not happy with this?
Do I have that right? Do I oversimplify? And if I’ve got it right, what’s the problem with what the man did?
Chris Reeve did very well at what he worked at. I think there’s no doubt about that.
The problem is that overnight he was the most important and famous disabled person in the world, and even though the whole world was listening to what he had to say, he did not speak for the majority of disabled people.
He got this attention immediately after a life-shattering accident, which understandably has an emotional process to it, yet his early feelings and opinions, which least represent what even other people with his exact injury feel years later as they go about their lives, are what ended up being the story about disability.
He and his cause got the attention and even some money that might otherwise have gone to helping disabled people with more immediate day-to-day needs.
He was rich and famous enough that he didn’t experience many of the barriers the rest of us face, so he could afford to say access issues aren’t important. He had a job to return to. He didn’t appear to lack medical care because of fiancial concerns. He wasn’t by any means a typical representation of the life of a quadriplegic person, yet he was represented as such.
He refused to publicly engage with the criticism of his disabled peers. But more importantly, he was used by the media — and many have suggested by the scientific community that stood to gain million of research dollars from any momentum he could create for them — in such a way that possibly even kept him in that bubble of hope other quads say they move on from eventually in order to live their lives.
More simply, he was a symbol unfairly thrust upon disabled people. He impacted the quality of our lives by not representing us accurately. And much of that wasn’t his fault.
I’m just sick of non disabled people telling me, how the paralympics have changed everyone’s attitudes to disability.
Well they might well say that, they are not the ones facing a cut in there benefits, due to the way in which the public has been manipulated to regard all us non celebs as fakers, cheats and stealing the bread from there mouths.