Answering Some of Roger Ebert’s (and Kevorkian’s) Fans

Roger Ebert surprised me.  He tweeted this post.  As a result, there were well over one thousand more visits here than is the norm on that day.

The visitor rate is still running high, although not that high.

Thankfully, there are far fewer comments from the group coming by way of Roger Ebert’s tweet than could have been the case.  Most of them are quite pissed at me.  One of the reasons is pretty legitimate – when I used the word “shithead” at one point referring to Ebert.

They’re right.  I shouldn’t have used it – especially without explanation.  But, as a friend comment here as well, whether I think there’s a justification or not just turns people off.

He’s right, too.  I let both fatigue and some bad-tasting memories get the better of me.  See, this wasn’t the first time that Ebert and disability activists have crossed paths on this topic.  I’ll save that for the end, though.

One commenter called me a “coward,” while writing from an anonymous email account, the irony apparently lost on him or her.

Several people seem to be under the misguided notion that the issues I’m talking about are just about me – a personal thing.  A rant from a lone blogger.

In fact, I am the only paid staffer for a disability rights group that was formed in 1996.  In 1997, over 500 disability activists gathered in front of the Supreme Court to voice opposition to legalization of assisted suicide while the Court considered two cases claiming a constitutional right to assisted suicide.  NDY also organized a rally and protest against the appointment of bioethicist Peter Singer at Princeton University, involving about 200 disability activists.  This is a list of organizations that support NDY’s position on legalization of assisted suicide.

NDY is a member of the National Disability Leadership Alliance, “a national cross-disability coalition that represents the authentic voice of people with disabilities.”  Further, “NDLA is led by 13 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.  The NDLA steering committee includes: ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition for Mental Health Recovery, the National Council on Independent Living, the National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and the United Spinal Association.”

Have I made my point?  I’m not just some cranky guy obsessing on this.  I’m a guy whose job it is to obsess on these issues.  The latter is better, because it pays the bills most of the time.

At least one person insisted that I must have formed my opposition to legalization of assisted suicide by being influenced somehow by religious fundamentalists.

In fact, there were two key events that shaped my views on assisted suicide – or more importantly – the agenda of the activists promoting it. (assisted suicide isn’t making progress because of some “natural” shifting of norms, but as the result of some skillfull, consistent and well-funded marketing over the past decade and more)

The first event was reading an article about Kevorkian in a disability magazine that had unbelievable claims about the people he “helped” being nonterminal and how motivated he was by live human experimentation.  Then I found Kevorkian’s book in an overstock bin, bought it, read it and found out that the article I read just skimmed the surface of how grotesque Kevorkian’s ambitions were.  Don’t take my word for it.  Please buy his book, especially since he’s no longer alive to collect royalties.  Get it from a library.  Read the damn thing.

The second event involved a notorious case in Canada, in which Robert Latimer confessed to having killed his 12-year-old daughter, Tracy, by gassing her in the cab of his truck.  After the medical examiner determined that Tracy’s death occurred through asphyxiation and confronted Latimer, Latimer confessed but said he did it out of “mercy.”  What struck me as very weird at the time was that the “right to die” organizations in Canada (who claimed they were after legalized assisted suicide for terminally ill people who were legally competent to ask for death basically adopted Robert Latimer as a poster child.

At one point, Latimer was sentenced to a ten year to life sentence.  The NY Times published a quote from a “right to die” leader in Canada that sent a clear signal to disability activists and advocates across North America:

Marilynne Seguin, executive director of Dying With Dignity, a Toronto-based group promoting freedom of choice for physician-assisted deaths, said that the Latimers had already lived under a sentence during the 12 years that Tracy was alive and that to add the 10-year punishment “is quite unconscionable.”

Do I really have to spell out what she’s saying here?  Please write if you don’t get this.

Lastly, as I promised, there’s the bit of the prior clash (although never really direct) over some of this same ground.

People might remember that “Million Dollar Baby” was the movie of 2005.  In reality, it saw limited release in 2004, just under the wire for Oscar consideration for that year.  (this was just one of several clever marketing moves)  It was almost universally acclaimed as a masterpiece by critics – before almost any of the public had a chance to see it.

People might also remember there was some controvery over the movie.  Probably you remember that some “prolifers” created a stink.  That’s kind of how it ended up, but it’s not how it began.  It began with a review of the movie that I wrote, which was followed by a protest by disability activists in Chicago, covered in USA Today, the London Telegraph, and by Michael Miner of the Chicago Reader.

After that protest, op-eds and essays started appearing in newspapers across the country, by disability activists, advocates and scholars.  Virtually all took exception to the stereotypes and really primitive plot devices that all led up the killing of a newly-disabled woman, at her own request.

It lasted for awhile, and then, suddenly, really – disability voices were pushed out of the discourse.  Since it’s my job, I tracked the pivotal event to one long and angry diatribe by a respected Chicago Sun-Times movie critic.

The Disability Studies Quarterly devoted part of an issue to thoughts and analysis revolving around the film and the resulting discourse.  I was interviewed by the editors to get my own thoughts about the rise and fall of disability representation in the discourse.  It’s reproduced below:

Million Dollar Baby and Not Dead Yet
Stephen Drake
Not Dead Yet

We started it. Really. Not Dead Yet (NDY) and others in the disability community really kicked off the controversy surrounding Million Dollar Baby. Baby opened in late December of 2004 in a limited release, qualifying for the 2004 Oscar nominations. As a result of this marketing strategy, Baby was deemed a “masterpiece” and Oscar-bound before the majority of Americans were able to see the movie.

Chicago was one of the cities slated for the limited release.  We received two calls from disability activists. One had merely heard about the euthanasia theme of the movie. Another had gone to see it and wanted NDY to know about it.

As research analyst for NDY, the job of seeing the movie fell to me.  Sometime during the first week of January, I went to see Baby at a packed matinee showing. Within a few days, I had drafted a critique and call to action that was published on January 11th at In the article, I hit many points that would be repeated by other disability activists, scholars and advocates:

1. The movie was deceptively marketed.
2. The portrayal of rehabilitation and consequences of spinal cord injury were unrealistic
3. Highlighted Eastwood’s history of anti-ADA activism.
4. The fact that Maggie had the right to have her vent turned off was ignored. The right to refuse treatment didn’t exist in this movie.
5. Called for others to see the movie, make their judgments, and protest, if they saw the same movie I saw. (Note: the fact we did not call for a boycott really threw opponents for a loop, at least for awhile, since it would have made us easier to attack.)

These points and others would be expanded upon and added to by many others in the disability community in the following weeks.

The next thing that followed was a direct action.  The Chicago Film Critics Association was hosting an event on January 19th.  What better target for a protest than a group of critics who had unanimously praised the film and hidden the “surprise ending” from viewers?  A group of disability activists, scholars and advocates all braved the cold to leaflet and picket the event.  There were photographers, reporters and camera crews who came just to report on us – a result of the advance press work. Part of the draw was the just-released press release from the National Spinal Cord Injury Association blasting the movie and Clint Eastwood.

As a result, disability advocates received some unprecedented airing in the print media – the objections to the movie and to Eastwood were covered in the NY Times, London Telegraph, Chicago Tribune, Los Angeles Times and a nationally-disseminated Associated Press story.

Roger Ebert, arguably the most widely-read and watched movie critic in the U.S., was one of the attendees at the Chicago event.  Some signs were even targeted at him (Ebert says: “thumbs up to killing cripples.”)  Ebert also likes to think of himself as having knowledge and sensitivity about disability issues, and has done some fundraising work for a disability advocacy organization in Chicago.

Ebert ignored any approaches from disability advocates here in Chicago before or immediately after the protest at the Chicago Film Critics Association.  The impetus for his response was undoubtedly the knowledge that Chicago columnist Michael Miner was composing a column about Million Dollar Baby and the disability protests.

Ebert’s “response” – published on January 29 in the Chicago Sun-Times —  was a classic example of a response from a white male under attack by a minority group. His essay contained the following elements:

1. Ebert assured us that some of his best friends were disabled.
2. Ebert assured us that he had promoted other quality films about disability.
3. Ebert informed us that a friend of his was a disabled film critic who also loved Million Dollar Baby.
4. Ebert told us he saw a great documentary on quad rugby at the Sundance Festival (Murderball) and that everyone should see that movie.

Ebert wasn’t done, though.  By the end of the article, he misinformed his readers about the nature and scope of the disability protests.  Ignoring the fact that disability advocates, activists, and scholars were reaching out to mainstream media, he informed readers that we were alerting our own “constituency” about something that might be harmful to emotionally vulnerable, newly injured people with disabilities.

Ebert mostly wanted to talk about the wrongness of “spoiling” – revealing the plot of a movie- and to rant against the religious right.  In doing so, he singled out Michael Medved as someone who had “spoiled” the movie to advance an agenda.  One silver lining of Ebert’s “response” was that its lopsided nature no doubt aided the acceptance and publication of an essay by myself and journalist Mary Johnson.

Ebert’s theme and marginalization of disability was quickly picked up by nationally syndicated columnists Maureen Dowd and Frank Rich, along with other columnists.  (It should be noted that the disability voice was absent from the beginning in conservative media, with a few token mentions in the Washington Times.)  The list of conservative critics being blasted for “spoiling” the movie got longer.

In the lists of “spoilers,” there was always one name conspicuously absent, though.  David Edelstein, a film critic on National Public Radio and Slate, blasted and “spoiled” Million Dollar Baby in both forums.  But Edelstein is a liberal, writing and speaking in very non-conservative media outlets.  Including his name to the list of “spoilers” would have wrecked the ideological purity of the lists being promoted.

In short, Ebert’s “response” triggered a steamroller that pushed the voice of disability advocates out of the coverage of Million Dollar Baby.  It started with marginalization and by the end, our presence was eliminated and the controversy about the movie redefined.

What this amounted to was an all-too-familiar collaboration between conservative, mainstream and progressive media.  This “collaboration” erased disability from the landscape of the story, to be replaced by a story about a volley in the “culture wars.”  Since neither the left or right sees us as part of their respective cultures, we ended up as collateral damage.  By the time the Oscars rolled around, the story had been completely morphed and we were virtual “road-kill.”

This set the stage for a repeat performance of cooperation in the wave of press coverage in the final weeks of Terri Schiavo’s life.  The effort to keep the story within a “culture war” framework was so extreme that Senator Tom Harkin’s passionate efforts to save Terri Schiavo’s life were ignored by the media, along with national disability groups that had been involved in the efforts for over two years.

The best predictor of future performance is past performance.  That being said, we can know in advance how the media – *all* the media – will respond to disability advocates’ involvement in anything smacking of “right to die” issues.

Let’s be honest – no one besides ourselves has a vested interest in giving us our proper place in public discourse about “right to die” issues or just about any issue.  Journalists and editors are used to thinking of disability from a “human interest” angle – stories of inspiration, overcoming, or longing for cure.  Bioethicists don’t want us invading their “turf,” which in this case, happens to be policies aimed at people with disabilities.  The left doesn’t want to acknowledge disagreement with us on some “better dead than disabled” topics.  The right doesn’t want to acknowledge us since the term “disability rights” is despised in conservative circles.

None of this is going to change anytime soon.  And it won’t change at all if we don’t help the process along. What we can change is our own performance.  The only way we get into the public discourse is by inserting ourselves there.  Judging from what was accomplished over the past few months, it seems obvious what that will take.  We should not shy away from peaceful protests, especially at atypical venues (I doubt the Chicago Film Critics Association had ever been picketed before) that will grab attention.  Street protest isn’t enough, obviously, we have to be primed and ready to respond with our press releases, op-eds, letters to the editors, etc. In short, speak out louder, longer and more forcefully.  A hint from traditional activism – angering someone makes it hard for them to ignore you.  That’s true for Roger Ebert, Maureen Dowd and Bill O’Reilly.  Sure, they’ll diss us – but they’ll have to acknowledge us before dissing us.  Being openly attacked is preferable to being systematically ignored.

We followed up with Drake and asked him to clarify several points. What follows is his response.

Stephen, commonly, we see the culture wars as being ‘fought’ over polarizing issues like abortion, and it is pretty clear where the two sides stand. In the Schiavo case and in the Million Dollar Baby response, these sides weren’t so clearly divided, and there was confusion about what was the ‘progressive’ and what was the ‘conservative’ side of things.  Though you refer to conservatives and liberals in your piece, they aren’t so easily separated when looking at their response to the movie. Is there something to be gained from the deconstruction of the polarity, from the dissolution of distinctions between camps?

Drake: Well, the players certainly looked pretty diverse at the beginning of the Million Dollar Baby controversy.  Eastwood is a conservative Republican with an anti-ADA background.  The United States Conference of Catholic Bishops’ official review of the film labeled it “offensive” but came up ambivalent about the treatment of euthanasia.  Initially, only a couple of conservative commentators blasted the film, but they gave the impression Eastwood was some new film pioneer of the left.

That left an ideal opportunity for the disability community to be heard, since the “usual suspects” were unusually quiet initially.  There was this void, just waiting to be filled, in the ongoing media blitz over this “masterpiece” that almost no one but critics had actually seen.

Disability activists, advocates and scholars became central figures in the controversy – briefly.  The fact that we played a central role served as a tool of deconstruction over the false right/left dichotomy over assisted suicide.  I suspect that one of the reasons we met such strong resistance after initial success was due to our role as agents of deconstruction.  Deconstruction serves our interests as a community, since the current paradigm doesn’t allow for our part in the debates over assisted suicide and euthanasia at all – unless it’s an individual disabled person asking to be killed.

What do you think the word collaboration should mean?  You talk about collaboration as an overlap of concerns.  But you hint that this collaboration might be more actively undertaken, particularly in order to silence the disability community.  Alternatively, what collaboration would you like to see amongst the media and/or in the disability community?

Drake: If I implied any sort of conspiracy or planning between, say, Fox News and MSNBC, then I communicated badly.  I put scare quotes around the word “collaboration” because it was the closest I could come to the phenomenon as it played out.  In fact, it was probably closer to a herd mentality when it comes to the media.  Almost any divisive issue gets portrayed as an aspect of the “culture wars,” and that is just as true for The National Review as it is for The New York Times.

You don’t need active collaboration or a conspiracy to get certain types of behavior patterns that lead to oppression or exclusion.  Sexism and racism aren’t conspiracies, but the prevalence of sexist and racist attitudes can lead to patterns of discrimination from a wide array of players.

Can you share some of the goals you had for the protest of the film?  Can you share goals for future protest, and for the future stance of Not Dead Yet towards the media, particularly on issues such as those raised by Million Dollar Baby?

Drake: As a community, we have been unable to establish ourselves as the experts on issues affecting our lives.  This isn’t limited to the issues of assisted suicide and euthanasia.  Time after time, news related to disability is dominated by surrogates – bioethicists, service providers, medical professionals, etc.  We don’t get to be our own experts.

One hope with the “Million Dollar Baby” protests was that we could raise our overall presence in the media, and hopefully raise our visibility in future media coverage.  To a certain extent, there’s been some tangible success.  Right now, news stories over the assisted suicide battle in California almost always reference disability advocates as part of the opposition coalition, and often quote disability advocates.  Several major stories about the infanticide proposals in the Netherlands have featured comments by representatives of Not Dead Yet and spina bifida-related organizations.

The media is entrenched in dealing with disability from a “human interest” or totally medicalized perspective.  With few exceptions, the media also favors framing all political controversy as an aspect of the “culture wars.”  The only way we’re going to break through that is to take the ground ourselves.  We must look for our opportunities, whether it’s a local homicide being called a “mercy killing” or the newest scandal regarding mistreatment in nursing homes.   In situations like these, we have as much expertise and as much at stake as others who jump to be heard in the media – whether it’s the latest incarnation of the Hemlock Society or the local nursing home lobby.  They’re not shy about being opportunistic – we should learn from that.  We can either sit and wait for our world to change to our liking or do what we can to change it.  We can stake our claim by asserting “nothing about us without us.”

So that’s about as much history and explanation as I’m up for tonight.  It came as a surprise – and an annoyance – that after all that, Ebert didn’t seem to process (or acknowledge) there’s a significant disability contingent with a horse in this race.  I know that during that year he debated John Hockenberry about the movie, and I’m pretty sure John would have covered a lot of the same territory NDY does when we talk about these issues.

I have a feeling this won’t make any of the angrier commenters any less angry, but I won’t take responsibility for that.  –Stephen Drake

3 thoughts on “Answering Some of Roger Ebert’s (and Kevorkian’s) Fans

  1. Excellent historical essay, Steven! But could you clarify who it is speaking in the italicized section?

    Unfortunately, we do continue to lose out when it comes to historical memory — I cannot count how many times I’ve seen Terri Schiavo referred to as a shorthand for the overreaching of the religious right (no mention of us disabled people)

  2. You have no need for explanation of your words, however it would be good background info for the uninformed. We know the agenda…eliminate all Mr. Drake. You have many allies that you do not know of…

  3. First, last and always, Stephen’s comment that no one else has a vested interest in getting our point(s) of view into the public discourse or care what we say/write or, I add, feel – is tops. And that it’s up to us to insert ourselves into the discourse….

    Keeping our history alive is also important. Thanks, Stephen.
    P.S. “shithead” was OK with me.
    I boycott movies by Eastwood, starting with and including “Million Dollar…”propaganda.
    And reviews by Ebert are a warning to me. I buy DVDs of films since I am too disabled to go to movie theaters.

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