PhilosopherCrip

In Michigan, it snows in the winter. I knew this when I moved, but didn’t think it could be any worse than CT’s “Nor’easters”. This week, it dropped to negative teens at night (negative 20’s with windchill) and snowed at least a few centimeters every single day. This is all a round about way of saying that I did something kind of rare and took the time to watch a DVD today because I was snowed in at my girlfriend’s apartment. We watched Last King of Scotland, which is hardly a date movie with its very graphic violence. However, we aren’t exactly like many couples and so it fit our tastes.

It is the true story of Ugandan dictator Idi Amin’s brutal regime that caused the deaths of over 300,000 of his own people. One of the striking parts of the story was that these deaths were not a part of a systematic racial cleansing per se, but were the killings of the factions of his political opponents. Amin’s warped psychology justified this violence in the name of stability, because his was one of the first African governments that were completely independent of colonial rule. His was a message of black power, unity, independence, and pride. The unified stability he sought was a response to hundreds of years of racist colonial oppression and exploitation. These ends were not themselves horrifying and could, in fact, be seen as a very good consequence for the people of that nation. After all, independence from colonial power is the same end that our country’s founders were aiming for during the war that created our nation.

Of course, the scope and nature of the violence visited upon his people was outrageous and not at all justifiable by this end. As the movie portrays, many of the killings were the executions of unarmed civilians, not war casualties. Amin was no patriot but a brutal murderer who was drunk with his own power. His absolute commitment to an ends that was not altogether morally bankrupt brought him to the use of means that are among some of the most horrific in history.

Also, Amin is not alone in his brutalities. History is ripe with examples of governments bringing about unthinkable tragedy in these ways. We are often quick to point at the Nazis or the Communists, but even our own government used such logic as it stood alone as the only entity to ever unleash the devastation of a nuclear weapon. Perhaps we may even look to the contemporary torture of terrorism suspects at Gitmo as an example of justifying violence and ignoring basic human rights in the name of a seemingly beneficial ends.

Perhaps I should start using this pattern of thinking as an explanation when I find myself discussing Jerry Lewis and his many offenses. One of the stock responses I get is “i understand why YOU don’t want to be pitied, but he has raised a lot of money to conduct research that will cure people who don’t want to suffer with MD.” Of course, I could and probably should challenge the notion that a medical cure is more desirable than a social one. However, this may be a much harder line of reasoning for someone to follow who has been so deeply socialized to believe that pity is an appropriate and virtuous response to disability. Instead, it may be better to really latch on to the deeply bigoted statements Lewis has made, and point out that the ends of funding for research cannot possibly justify the harms he visits upon the crip community with his very public words and attitudes.

Now, this is not to say that Lewis can be justifiably compared to a murderer like Amin in every way.  Surely, the harm Lewis does can not compare in scope.  Arguably, bigoted attitudes like his lead to the incarceration, abuse, and untimely death of thousands of people with disabilities in nursing homes, institutions, and the like.  Yet, he cannot be held directly responsible as the primary cause of this outrage, because he is a washed up comic, not the head of a government.

However, the means-ends reasoning that people use to defend this hack is quite similar:  “But what does the money go toward?” . . . “Doesn’t the money he raises help children?” . . . etc. etc.   My question is, what ends are good enough that the disability community should be asked to tolerate this man when he says in an article he wrote for Parade magazine that wheelchair users “just have to learn to try to be good at being a half a person?”  What amount of money is worth awarding a humanitarian award to someone who says on national TV, immediately after the passage of the ADA making employment discrimination against crips illegal, that people with disabilities “cannot go into the workplace. There’s nothing they can do?”  He may not be a dictator, but millions of people watch Jerry and are “touched” by his words and cannot understand why we can’t look past his old fashioned views because he has done so much good.  These supposedly good ends cannot be justified by the means of promoting the most basic element of ableism that keeps us as second class citizens almost 2 decades after the passage of ADA, pity.  I couldn’t possibly come up with the words that link pity with our oppression and marginalization better than Jerry did himself in a TV interview in 2001: “Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

Not satisfied with handing out Best Picture Awards to deceptive and small minded films like Million Dollar Baby, the Academy of Motion Picture Arts and Sciences intends to give Jerry Lewis its Jean Hersholt Humanitarian Award at the Oscar Awards ceremony on February 22, 2009.

Many people with Muscular Dystrophy and other disabilities strongly object to the way Lewis uses dramatic images of helplessness and pity to beg for money. There is an entire organization called “Jerry’s Orphans” that is made up of former Telethon poster kids who have grown into adults that understand how pity obscures and thwarts demands for justice, respect, and civil rights.

How many of us cringe when someone feels “terrible” that we are LPs/deaf/chair users/learning disabled/autistic/etc? That cringe is what this petition is giving voice to. The Academy Awards plan to present Lewis with their Humanitarian Award for his work with the telethon. The petition describes in more detail why this is problematic and was written by one of Jerry’s Orphans, Laura Hershey. I can say for sure that everything in it is factually accurate. I know the author personally and have researched all of the cases she describes in the petition (I am thinking about writing a dissertation about how pity harms folks with disabilities, so Mr. Lewis provides me with a lot of material).

Jerry Lewis, looking dismayed and surprised...

Anyway the petition against presenting Lewis with the award can be found at: http://www.petitiononline.com/jlno2009/petition.html

The full text of the petition is:

To:  The Academy of Motion Picture Arts and Sciences

This petition has been launched to object to the Academy of Motion Picture Arts and Sciences’ announcement that it will give Jerry Lewis its Jean Hersholt Humanitarian Award at the Oscar Awards ceremony on February 22, 2009.

During his decades of hosting the Labor Day Telethon, Jerry Lewis has helped to perpetuate negative, stereotypical attitudes toward people with muscular dystrophy and other disabilities. Jerry Lewis and the Telethon actively promote pity as a fundraising strategy. Disabled people want RESPECT and RIGHTS, not pity and charity.

In 1990, Lewis wrote that if he had muscular dystrophy and had to use a wheelchair, he would “just have to learn to try to be good at being a half a person.” During the 1992 Telethon, he said that people with MD, whom he always insists on calling “my kids,” “cannot go into the workplace. There’s nothing they can do.” Comments like these have led disability activists and our allies to protest against Jerry Lewis. We’ve argued that he uses the Telethon to promote pity, a counterproductive emotion which undermines our social equality. Here’s how Lewis responded to the Telethon protesters during a 2001 television interview: “Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

Jerry Lewis has also made derogatory comments about women and gay men. His outdated attitudes and crude remarks are dehumanizing, not humanitarian.

Therefore, we the undersigned support the actions and arguments of the coalition group The Trouble with Jerry. We protest the Academy’s characterization of Jerry Lewis as a “humanitarian.” And we ask that the Academy cancel its plans to give Lewis the Hersholt Humanitarian Award.

Sincerely,

The Undersigned

I had too much caffeine and can’t sleep after spending the bulk of the last 2 days driving my van from CT to MI.  I was visiting my friends and family over MSU’s winter break for almost 3 weeks and I am now gearing back up for the beginning of another term of studying and teaching (the completion of my 22nd consecutive year of education — 3 more to go).  While I was “home” and in the car, I spent a lot of time thinking about what exactly constitutes a home.

The Waterbury Clock Tower in CT

I think I am starting to think of both CT and MI as a home of sorts, but for different reasons.  For me, CT is home because it is where the people are who know more of me than what I choose to show.  That is, going to college, starting grad school, and becoming involved in the crip community were all big turning points in my life, but they all offered me opportunities to redefine myself and present myself to a new audience as I wanted to be seen.  Surely, people see more of us than we deliberately show them, but starting over and moving half way across the country does offer a person a measure of control over how they are perceived.  Aside from experiencing the old familiar sights, sounds, scents, and tastes, this home (CT) offers me a reminder of  “where I am from.”  It is all too easy to forget your most formative experiences and relationships to the world around you when you move away from the people that know you in that context.  An old parish priest, a high school English teacher, or a college buddy can rip you out of the comfortable self image you have created and promoted for yourself, confronting you with your past self and reminding you of the responsibilities you owe these people for helping you build this creation you call your life.

The MSU "S" and Sparty the mascot

Yet, part of me feels that MI is “home.”  This is because I feel this is a life that I have very actively chosen to live.  I absolutely miss the comfort of having my family and friends around and the emotional and practical support structure that entails.  I desperately miss the feeling of absolute, unconditional love so willingly offered by my immediate family and closest friends.  However, walking through the door of this tiny dorm room that seems absurd for a 26 year old man with a masters degree to be living in, I am reminded by everything that this is the life I have deliberately made for myself.

Physically, everything is at my fingertips.  I imagine many able bodied folks take this sort of thing for granted, but my crappy little dorm room is custom designed in many ways so that I am much more comfortable in it than someone with “normal” bio-physical functioning would be.  In CT, this is not the case and I have to be much more dependent on others for an entire range of tasks.  Even the geography of my living space itself speaks to the notion that this is MY life that I have chosen to live how I will.  Of course, this only scratches the surface of how MI has become home because it has become the place that I live with the most self determination.  This is something over and above making your own choices, but involves actually determining your actual self. This is a challenge for any person I am sure, but for a crip who often finds that he doesn’t quite fit into the set of molds society has caste and tried to squeeze him into, the opportunity to break free and deliberately choose a life is a beautiful thing.  This is the core of the independent living ideology as I understand it.

It seems only appropriate that I am incredibly ambivalent about Peter Singer’s recent obituary for Harriet McBryde Johnson in the New York Times.  After all, her writing reveals that she herself was ambivalent toward the man, who lays out philosophical arguments for why parents should have the option to kill infants with certain kinds of disabilities.  Many in the disability rights movement are outraged that he was asked to write the piece because he has openly acknowledged that her parents should have had the right to kill her as an infant, if they so chose.  It does seem counter-intuitive to ask a person who publicly puts forth some of the most deeply abelist views possible to tell the story of a vitally important leader in the disability community.  However, if we take Harriet’s description of her own life’s work seriously, we see that she has come to terms with Singer as a human being and not a monster, so why should we close ourselves off from her understanding of the man and continue to demonize him?

In her book chapter about her arguments with Singer - Unspeakable Conversations, her journey toward seeing him as a human and not a monster is a central theme.  Surely, his philosophical views are not something we should stop resisting in every way we can at every opportunity, but can we afford to ignore the lessons she has to teach crip activists about focusing our outrage on systems of oppression and ideologies rather than individual people?  That is a central point of her reflections on her relationship with Singer.

RIP Harriet

She hesitates to even shake his hand upon their first meeting, but after genuinely trying to understand his ideas and how they were developed Harriet concludes: “If I define Singer’s kind of disability prejudice as an ultimate evil, and him as a monster, then I must so define all who believe disabled lives are inherently likely to be less happy, or that a life without a certain kind of consciousness lacks value.  That would make monsters of many of the people with whom I move on the sidewalks, do business, break bread, swap stories, and share the grunt work of politics.  The definition would reach some of my family and most of my nondisabled friends, people who show me enormous kindness and who somehow, sometimes manage to love me through their ignorance.  I can’t live with a definition of ultimate evil that encompasses all of them.  I can’t refuse the monster-majority basic courtesy, respect, and human sympathy.  It’s not in my heart to deny every single one of them, categorically, my affection and love” (227-8).

Key lesson: don’t demonize people for being honest about opinions that most people hold silently.  This is simply a way of scapegoating.  I do think that Harriet is completely right in this regard.  Singer and other bioethicists have become the whipping boys of many within the disability movement.  Surely, his biases are tremendously harmful to us and his arguments must be refuted.  However, these arguments are grounded in the same biases that we encounter every day of lives, even with those we hold closest to us.  Demonizing Singer does not help our cause, but makes us look irrational.

So, if Harriet is right and we cannot reject Singer as “categorically evil,” does this mean that we should uncritically accept him as a spokesman for telling the final chapter of her story in the New York Times?  One objection that I think needs to be raised is the notion that she should be defined only in contrast to him.  That is, Harriet’s life and work were important in their own right and should be remembered as such.  It seems wrong to characterize this leader within our community as only an opponent of Singer’s positions who happened to once allow herself to be tokenized and invited to Princeton (note: Harriet herself describes this experience as a tokenization).  It seems to me, her work to resist the telethon, at the very least, deserves equal air time when publicly summarizing her life. The offense is not THAT Peter Singer wrote the article, but that it did not do her justice as a force unto herself.

So, my objection to Singer’s obituary is not offense at him being some kind of monster.  This would be counter-productive to our cause in that he and others clearly responded better to Harriet’s measured argument than Not Dead Yet style civil disobedience.  This is true for philosophers as a general rule, I’d say.  If we are to silence dangerous opinions, we must do it with arguments of our own that show the opinion holders and the public at large why we are right.  Sometimes, when we are silenced we must use our collective action to get the attention of powers that be with tactics like civil disobedience.  But, once we are taken seriously by our opponents in the public sphere, it is time to move past the chanting and the arrests and address our opponents how we wish to be addressed, as fellow human beings.

I often use the word “crip” to refer to disability on this site and with those I am comfortable with, who I think can handle it.  I don’t often use it in professional settings, but even then it occasionally slips out.  Many times, I find myself having to explain how and why I am using the word.  Both temporarily non-disabled folks and people with disabilities express curiosity, amusement, horror, or some combination of these emotions in varying ratios.  I then attempt to educate and sooth them with an explanation about reclaiming language and how many marginalized groups have done and continue to do this with words that have traditionally marked them as “less than.”

When I use the term with other crip activists, I operate on the assumption that we are using the term in the same way with the same meaning.  Over this winter break, I have finally gotten around to finishing the very compelling autobiography of Harriet McBryde Johnson (started it last Spring), who also uses it as a word of choice when referring to people with disabilities.  It was this reading that made me question whether this term is used with a consistent meaning in the disability movement.

While describing her trip to Cuba, Harriet writes about the structure of their disability movement and the different organizations that have formalized it “One is comprised of people who are deaf and hard of hearing, one is of blind and visually impaired people, and the third, ACLIFIM, Asociacion Cubano de Limitados Fisico-motores, is made up of people with “physical-motor” disabilities, what we call crips” (156).  This definition of the word crip shocked me and seriously undercut the assumption that everyone in the disability world used the word in the same way.  Here I was two-thirds of the way through a book that I think has become an instant classic of crip culture, realizing that this luminary was using the term in a very different way.  What was even more disturbing is that I think Harriet, who has taught me a great deal with her writing, is using the term in a way that is not quite right somehow.  I’m not sure if I can argue that my use of crip is objectively and absolutely correct, but I do want to say that it has some important advantages.

My new vanity plate! Crip Power Baby!

First, let’s make the distinction.  The difference in usage is subtle, but it seems like Harriet wants to attach the term to a particular biological category, whereas my use is broader and more grounded in a social or political identity.  I have had discussions with many friends in the disability community that run the gambit of diagnosis and our usage does not distinguish between biological types of disabilities.  I have friends who are Deaf that identify as crips and use the word to describe themselves as part of a community and a social movement.  Unlike Harriet’s usage, you do not have to have a mobility disability to qualify, but rather a particular worldview.  To me, crips are people that have disabilities and that recognize the stigma and marginalization they experience in their daily lives for what it is, and choose to defy it.  So, more people can fall under the category than just those described by Johnson.  I think this is a better way of defining the term because it allows for a greater solidarity across disability types.  It focuses on the common experience of marginalization and common interest of liberation, rather than differences that have segregated us in the medical-human services complex.

Further, my usage of the word may be broader in its biology, but it is more narrow in its politics.  In her chapter about her MDA telethon protests, Harriet refers to a man that acts as her foil on a televised talk-show about the telethon as an “establishment crip.”  Clearly, this is a jab at his authenticity as a real member of the crip community, and so there must be something political about the term for her too.  However, the fact that she can identify him as a crip of any variety tells me that, for her, the term is more about biology than ideology.  I don’t think a person deserves to weild the title until they have seriously considered disability as a social system of oppression and begun to work toward the good of the crip community, as such.  It would be a stretch for an MDA Telethon defender to qualify.  Again, I prefer this usage because it emphasizes our community as it defines itself in its defiance of oppression, rather than is defined by the medical establishment, which is the lynchpin of the system of that oppression.

This is not to deny that crippiness in particular and disability identity in general is bound up closely with biological difference.  I don’t think that my use of the word crip could apply to a person that didn’t have some kind of physical, sensory, cognitive, or emotional difference of some kind, even if it wasn’t formally diagnosed by a physician.  I guess my point is just that our use of the term should move away from the biology as much as possible so that we can truly reclaim it on our own terms.

Not that he or anyone remotely close to him will read this obscure web-log post, but I wanted my first post since going into the “hibernation” of finals season to be in honor of the Honorable David Paterson, governor of New York.  Recently, SNL did a sketch with Paterson as its subject.  I was busy frantically writing a seminar paper last Saturday and missed the show’s live airing, but caught it on youtube more recently.  Admittedly, parts of the sketch are quite funny, particularly the parts where their portrayal of Paterson “craps on New Jersey.” 

However, the sketch was quite upsetting in their caricature of this articulate, politically savvy leader as a bumbling idiot, merely because he happens to be blind. Typically, SNL is funny in its mockery of politicians because it picks up on personality quirks and contextual absurdity to poke fun at them. For example, Will Ferrell’s famous southern drawl, silly smirk, and ill-imagined SAT words made “strategery” a favorite of my generation. More recently, Tina Fey’s spot on impersonation of Sarah Palin in several opening sketches, with her winking, apparent ignorance public policy, and outright annoying “folksy” demeanor surely had a much bigger influence on people’s political sensibilities than a short spot on Weekend Update, after the show is half over.

Governor David Paterson of New York

So, why would Palin and others keep silent, while Paterson risks the appearance of being an oversensitive, bitter blow hard? The answer is simple, this SNL was not about Governor David Paterson, it was about disability. The sketch does not pick up on any personality quirk of Paterson’s as an individual, but stereotypes him as a blind man. Holding charts upside down, wandering about in front of the camera, and generally appearing confused, these jokes were not about Paterson but about blindness. It is as egregious as if SNL decided to mock Barack Obama, not for being a media darling, as they did, but for being a black man, complete with those stereotypes. I am not trying to engage in the “oppression olympics” here, but mean to point out that this sketch spent a good deal of time mocking a stereotype of disability, not a particular political figure.

Paterson’s response was simply heroic. It is unquestionable that speaking out against the SNL sketch was against his political interest. The associated press reports that Lee Miringoff, an expert pollster that gauges public reaction to politicians, said that the reaction against the skit was “unwise” and explained “I can’t recall the last time a politician has reacted negatively to being lampooned on ‘Saturday Night Live,’ . . . It humanizes them. At least your name is on the marquee.” What this Miringoff doesn’t get is that Paterson was not trying to react in a way that would serve his political interests. What is “unwise” politically can be straight-up valiant when you look beyond the narrow political picture. For once, a politician was not thinking just of himself, but of his community.

Governor Paterson took a strong stance in support of the disability community, showing his moral medal as far as I am concerned:

“Now that [Alaska Gov. Sarah] Palin’s not around, they seem to have run out of material . . . The idea of a person rolling around the stage in a chair, being disoriented, can’t find anything, bumbling, in a sense looking like a clown is a way disabled people are portrayed all the time. . . . The perception that disability equals inability to be responsible is totally wrong . . . There is only one way that people could have an unemployment rate that’s six times the national average — it’s attitude . . . And I’m afraid that the kind of third-grade depiction of individuals and the way they look and the way they move add to that negative environment . . . I don’t mind that they make fun of me, but I thought it was important to speak up for those who don’t have a voice and don’t have a job.”

These, my friends, are the words of a true hero of Crip Town. He is not merely a politician who happens to have a disability. He is one of us.

Thank you David.

Recently, there has been a court case in the news about Jarek Molski.  He is a Californian that has recently been told he can no longer bring lawsuits against public businesses that are in violation of the ADA by not allowing for access to their services by wheelchair users.  These violations are of the sort where businesses do not have wheelchair ramps or accessible parking.  The US Supreme court upheld the decision to ban Molski from filing any more law suits — by refusing to hear his most recent case — because he has filed more than 400 of them.

I have no legal training, so my analysis and opinion should be taken with a grain of salt.  However, strangely enough, I agree with the US Supreme court on this one, not because of the NUMBER of cases but because of the OUTCOME of many of these 400 cases.  The LA Times reports, “Fear of adverse judgments compelled many to settle out of court, earning the Polish-born plaintiff hundreds of thousands of dollars in less than two years.”  That is, these businesses were not becoming accessible as a result of these law suits, but paying this man settlements instead.

To me, this is completely absurd.  In fact, I don’t think personal payments should even be allowed in these kinds of ADA cases.  I don’t have a law degree, but it seems to me that these kinds of cases involving access to public space (as opposed to cases that have to do with something like employment discrimination) have very little to do with harms to an individual, but rather harm an entire community or class of people.  It makes absolutely no sense for a harm being visited upon a large group of people to be “settled” by a payment to an individual.

I find the notion that any one individual should have personal gain from these kinds of cases completely and utterly despicable.  This is because he is essentially making a profit of off our community’s marginalization and oppression.  In my opinion, he is no better than a nursing home industry lobbyist that makes a profit off of the isolation and incarceration of our people, who want to live in the community but are stopped by his work manipulating health care benefit laws to exclude community choice.  Somehow, it feels even more repugnant because Molski is supposedly “one of us.”  He knows what it feels like to be excluded from a restaurant or a bar or a barber shop or a book store or any number of places, but chooses to line his pockets and preserve that feeling for others.  This is the ultimate act of selfishness and exploitation.

Perhaps, in the most egregious of cases, it would make sense to award punitive damages to punish the offending business (especially when that business has very deep pockets and could have easily been accessible).  Even then, I feel uncomfortable at the idea of making a payment to an individual as a way of mitigating a harm suffered by an entire community.  I wonder if it would be possible to pay such fines to non-profit organizations that fight for the good of people with disabilities as a whole, like Centers for Independent Living.  Perhaps payments could be made to a scholarship fund for students with disabilities who want to attend college or a fund that helps individuals with disabilities to afford modifications to their living space or transportation to make it accessible?  Maybe these are all pipe dreams, but the thought of paying a single person money to somehow make up for the marginalization of an entire people turns my stomach.  This is NOT what Justin Dart had in mind when he devoted his life to freeing our people with the passage of the ADA.

I don’t have a great deal of time to write this afternoon, but wanted to weigh in on Obama’s speech last night.  A lot of my friends were very pleased he mentioned disability as a difference that, while relevant and important, cannot stop us from uniting as one people.  He said, “It’s the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states. We are, and always will be, the United States of America.”  Of course, in a world where disability is so often swept under the rug as an issue that is not as “sexy” as the others — it’s sad when the tax code is perceived as more interesting — it was encouraging to hear our next president call out to us with his message of unity and hope.  Let’s look at it a bit more carefully.

Obama delivers his victory speech on on November 4, 2008 in Chicago before an estimated 200,000 people

First and foremost, disability was listed among a series of human traits that have historically been separated out and marginalized as the “Other.”  That is, Obama’s message of unity is closely bound up with a message of justice.  Unity cannot merely be a sweeping under the rug of oppressions and marginalizations.  We cannot IGNORE how folks are treated differently in the name of “unity.”  Sometimes, unity must be sacrificed in order to deal with injustice (like the civil war or the civil rights movement).  However, at the end of the day, true unity CAN be achieved if we address these differences head on and right the wrongs that have divided us.  For me, the reason Obama’s mention of my community brought up a swell of emotion has to do with this recognition of injustice and his call to achieve unity through its demolition.  Unity should not be achieved by excercizing top down power that ignores or suppresses difference and forces conformity, but through grassroots change that renders such differences as close to harmless as possible.

Closely tied to this recognition of a need for justice to achieve unity was an implicit call to action.  He was saying that these marginalized groups have the power to address their own oppression, take back what is rightly theirs as Americans (civil rights), and unify our nation as one people.  If the key to unity is to address injustice, we ourselves as marginalized, divided people must take action to do just this.  While John McCain enjoyed talking about HIS personal responsibility and HIS record of putting country first, Obama called upon an entire people to, themselves, take responsibility for our nation’s fate.  The difference here is key to why Obama was able to win in such a big way.  It is the key to his political genius.  John McCain talked about “the government” as if it was some hulking, mysterious force that acted upon our lives while Barack Obama called us to be involved in understanding and shaping how this force affected our country.  He called us to remember that the government is not some great evil, but rather a creation of the people, for the people, and by the people.

The rhetoric that surrounded disability was no exception.  McCain wanted to talk about how his government would help children “with special needs.”  Obama, on the other hand, called our entire community to his side, recognizing our collective voice and our power to ourselves create change.  As evidenced by his very informed, thoughtful disability policy platform and his recognition of us on his diversity “short list” last night, Obama did not set us apart as an other to be pitied, but asked for our help to change the social landscape of a nation.

At the end of the day, Barack Obama’s electoral college landslide was nothing short of the greatest COMMUNITY ORGANIZING effort ever to be conceived and executed.  YES WE CAN!!!!

After reading some sections of Michael Chorost’s book about his experience getting a cochlear implant, Rebuilt: How Becoming Part Computer Made Me More Human, I have been thinking a lot about a conversation I had last summer at the Little People of America National Conference in Detroit.  My roommate at the conference, Ian, is a dwarf, but also identifies as Deaf, signs fluently, and has a cochlear implant. Ian is a sophomore at MIT in Cambridge Mass., majoring in computer science, and I have been friends with him since last the 2007 LPA conference. I have always seen striking similarities between the Deaf and LP communities (dwarfs who embrace the identity and are active in the community often refer to ourselves as “LPs” to draw that distinction, much as the big D is used in Deaf culture.) and I had a wonderful conversation that drew upon some of those similarities with Ian about his decision to undergo cochlear implantation last year.

One great similarity between the LP and the Deaf community is that our pride in our unique way of being often moves us to resist the “cure” ideology. We do what we can to resist the many reproductive technologies that are often used to avoid the conception or birth of babies that would share our way of life, and we often resist new technologies that are meant to change our identity, so that we may “pass” in the world. For the Deaf community, this has been the cochlear implant, for LPs that has been elective limb lengthening (ELL) surgeries. Both procedures medicalize what we see as our cultural or social differences and both have a history of carrying serious health risks. So it was interesting for me to speak with Ian about why he would choose to accept the risks of his implant (and, thus, medicalize his deafness) while also rejecting the option of ELL.

For Ian, the decision was made largely because he grew up hard of hearing, rather than Deaf, with hearing parents and only began to really take part in deaf culture and learn ASL around the same time that he began considering the implant. To me, this seems like a case of having more time to accept and embrace one unique experience of the world that he had from birth (dwarfism) rather than another that he had to learn to make a part of his life (deafness).

Our conversation did not stop here though, because we both began to think more carefully about the blurry line between adaptive technology and cure. People with disabilities of all stripes, even the most radical activists, accept adaptive technology as the tools of liberation. Electric wheelchairs, screen reading software, and video phones are used throughout the broad disability community and are central to our ability to thrive with our differences. They are seen as means to shattering social barriers and bringing us into full participation and equality. However, this line is blurred when we start to think about adaptive technology that directly affects the function of our bodies (like cochlear implants and ELL). The obvious difference here seems to be that I can crawl out of and scoot away from my wheelchair, while someone with the ELL “cure” cannot walk away from their artificially lengthened legs, just as a Deaf person can remove their hearing aid when they sleep at night, but the an implant is surgically embedded in them.

However, there is another distinction to be made here as well. In fact, I think the more important distinction is not the permanence or invasiveness of the adaptive technology, but how it impacts your identity. A hearing aide will not cause a small child to grow up as someone who passes and is completely removed from the Deaf culture in the way that a cochlear implant might. A wheelchair would not reshape an LPs identity so that they are no longer a member of that community. Of course, this distinction is nothing essential to the technology itself, but rather a function of how it is used. Ian is an example of someone who uses an implant, but still has a Deaf identity. It conceivable that a person could also get ELL and retain an LP identity (although this may be more difficult because our community rejects ELL more militantly and universally than the Deaf culture has resisted implants and ELL really can only be performed at a young age, before or during the growth spurt).

So, perhaps Ian chose to have the Cochlear Implant and reject the ELL because he had a stronger connection to the dwarfism community and the identity it entails that he did not want to reject.  Maybe it is also possible that Ian’s particular life goals would be more threatened by deafness than they would short stature (this can be true even for someone who accepts the social model because you can say that society disables you in different ways).

I’m not sure if the government “officially” designated October as Disability History Month, but it is widely celebrated as such in the disability activist community.  In some states (like NC and soon to be MI if all goes well), the public schools even teach a disability history curriculum during the month of October by mandate of state legislation.

If you have time, this is a good time to pick up a book about the history of the disability rights movement.  The industry standard is No Pity by Joseph Shapiro.  A more focused, but still fascinating and important book is activist and attorney Harriet McBride Johnson’s biography Too Late to Die Young. I was very lucky to be able to see Harriet speak and have her sign my copy a few years ago and am sad that I will not get to see her speak again now that I have read her book — she passed over the summer.

I can’t figure out how to embed a google video right into my page like I can youtube, but here is a link to a VERY well made short film about some major figures in the history of disability activism.  It summarizes the stories of Ed Roberts (visionary founder of the Independent Living movement), Wade Blank (original organizer of ADAPT, which uses grassroots non-violent direct action activism), and Justin Dart (my favorite Republican - except my dad - who is responsible for educating the entire country, from the grassroots to the president, about his vision for the inclusion of crips in mainstream society, which eventually became the ADA).  These are the heros of “crip town” and some of the patriots we should aspire to emulate.