PhilosopherCrip

This weekend, I’ll be going to Atlanta with the grassroots, non-violent, direct action group ADAPT to work toward ending the institutional bias in the United States long term care system.  “Institutional bias” is a term developed by disability activists to describe the unchallenged, irrational preference given by the federal government for funding the care of people with disabilities of all ages in institutions like nursing homes rather in the community with their families.

I will be blogging live from the action every day, so check philosophercrip.com often for my personal stories and reflections.  This will be part of a larger blogswarm effort being organized by my friend Nick Dupree over at http://www.nickscrusade.org.  For a preview of why we are headed to Georgia specifically, read http://www.adapt.org/atlanta2009.php.  Finally, for real time updates about the action as it unfolds, check out MIADAPT and NationalADAPT on Twitter.

Let’s FREE OUR PEOPLE NOW!!!!

Orange is the color of Community Choice!

While we were ultimately successful at Senator Debbie Stabenow’s Lansing office this week, we definitely rocked the boat quite a bit, thus really upsetting some of the crew.  In fact, the Lansing contingent of MI-ADAPT’s bad behavior even earned us a phone call the next day to our state organizer from one of the senior staffers.  It felt something like when you get in trouble at school and get a phone call to your parents that evening.  Except, in this case, we could count on the recipient of the call to be in on the act instead of ready to send us to our rooms with no dinner.  For the moment, I’m going to put aside how absurd it is for a government official to call and chastise a direct action activism group (she works for the people and should be the one afraid of displeasing us).  Rather, I’m going to write a few quick words about why it is non-violent, direct action, civil disobedience is necessary in American politics and how it is so very effective.  That is, this blog will be aimed at readers who are confused or upset by the notion that someone might use civil disobedience to “strong arm” others in negotiations amidst a democratic society.  I will do this in the context of other struggles for liberation, partially as a tribute to Black History Month.

Let’s start by pointing out some big differences between the context of our use of civil disobedience and the more familiar and more widely accepted usages of it by 1960s era civil rights leaders.  At the most obvious level, there is a difference in who is committing the civil disobedience. This is nothing more than the simple observation that crips are not a racial minority.  Moreover, we do not have the same history as black Americans and the nature of our oppression, while sharing some structural similarities, is not the same.  While we are also fighting for the end to institutionalized segregation (in nursing homes) and violence (physical and emotional abuse, and killing, that happens in these places), there are many differences between these experiences, most of which I can not even fully see or understand as a white male.

Black activists are met with violence in Birmingham, AL 1963

There is also a substantive difference in how the civil disobedience is carried out.  The famous actions of MLK highlighted the injustice of segregationist laws by breaking those very same laws.  The idea was, if it’s illegal for people of color to sit at the same lunch counter as everyone else, we are going to clog the lunch counters and make them lose business or have us arrested so that the world sees how wrong this is.  In the case of ADAPT’s actions, the laws we are resisting are not as straightforward and not as easily broken.  Medicaid regulations aren’t the type of things you can directly flout en mass to raise public outcry at their injustice.  I can’t even imagine what this would even look like.  How might we break the unjust laws of the institutional bias that incarcerates our people in nursing homes in a way that would be public and raise the tension around this issue to the surface of public consciousness where it can be seen by everyone and not just those that are suffering and dominated?

I don’t think that because we can not directly break the unjust laws with our actions it means that our civil disobedience is somehow unjustified.  It seems that the balance of power between the powerful and the marginalized is as scewed as ever and non-violent, civil disobedience is a viable tactic.

First, and most obviously, it raises the issue to public consciousness.  The drama of sit ins and arrests makes people talk.  What are these people doing?  What issue is so important to them that they are willing to sacrifice their bodies in this way?  Even the most negative response of “that’s not the way democracy works” at least gets people to acknowledge the issue at hand, which is difficult for a marginalized group that is so often swept aside for “sexier” political issues.

This week, MI-ADAPT’s action didn’t get to the point of police and TV crews, but it functioned as a negotiation tactic.  No one explains how civil disobedience is PART of the negotiation process better than the man himself, MLK, in “Letter From a Birmingham Jail” after he was imprisoned during the Birmingham lunch counter sit ins, “You may well ask: ‘Why direct action? Why sit-ins, marches and so forth? Isn’t negotiation a better path?’  You are quite right in calling for negotiation. Indeed, this is the very purpose of direct action. Nonviolent direct action seeks to create such a crisis and foster such a tension that a community which has constantly refused to negotiate is forced to confront the issue.”  When there is such an imbalance of power that a marginalized group is not even allowed the common courtesy of serious consideration and negotiation, that is when non-violence must come in to play to put the negotiations back into balance.

This is exactly what happened at the Senator’s office last Tuesday.  Let me back up.  Over the past 2 years, MI-ADAPT had sent emails requesting co-sponsorship of the CCA that were responded to with form letters.  We had requested formal meetings to talk about our issue with the Senator and were told to wait and that they would “get back to us.” Once, some of our members showed up in the Senator’s DC office to see if she was there and might at least say a quick hello.  He caught her in the hall and was told she had already intended to sign on to the CCA and it must have been a staff oversight.  Clearly, this is a pattern of people with disabilities being swept aside and told to wait.  It was not an outright hostility, but it was a clear message that we are not a priority and our lives and liberty don’t matter as much as the issues she was dealing with.  This message came through loud and clear in Stabenow’s Lansing office this week.  Again, we were told they would pass along the message, but we would have to wait.  They could not guarantee support, they could not even guarantee a meeting about the substance of the issue.  That is, we were being told that THEY have the power and were not letting go of it.  THEY controlled if negotiations even would happen and were not about to give any ground.

ADAPTers getting arrested at national action in Nashville, TN 2006 (photo by Tom Olin)

It was only after we realized that we were not being negotiated with in a serious way because we were perceived as powerless that we moved to take back the power we needed in order to get the attention our brothers and sisters dieing in institutions deserve.  The chanting and blocking of the office exits was not a move at coercion, but a move to get their attention and become an urgent priority rather than a marginalized group that could be ignored.

This is the state of American politics.  It is built around a system in which big campaign contributors have access to the law makers and the rest of us are told to stand in line indefinitely.  When we do not have deep pockets, we need to find other ways of becoming a priority for our “public servants.”  Even those who are not directly hostile to our cause, like Debbie Stabenow who HAS supported de-institutionalization in the past, serve the whims of the already powerful.  The issues that have her attention — and the attention of every other legislator — are those that serve the interests of the wealthy and the connected.  To become a priority and to get her attention as a group deserving negotiation, we could not use our bank accounts, so, in the tradition of other marginalized groups, we used our bodies and our voices.

To supplement my last post encouraging readers to track the adventures of MI-ADAPT via twitter.com, I thought I’d add a few words about what ADAPT is exactly.  I lifted the various pieces this description off of the national org’s website, but feel it accurately describes the MI chapter as well.

The Main Issue at Hand: For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc.  Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly wan t their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It’s time for Real Choice.  The Community Choice Act provides an alternative and will fundamentally change our long term care system and the institutional bias that now exists. Building on the Money Follows the Person concept, the two million Americans currently residing in nursing homes and other institutions would have a choice.

History: ADAPT has a long history of organizing in the disability community and using civil disobedience and similar non-violent direct action tactics to achieve its goals. In 1983, as a project of the Atlantis Community in Denver, ADAPT began its national campaign for lifts on buses and access to public transit for people with disabilities. ADAPT started as American Disabled for Accessible Public Transit. For seven years ADAPT blocked buses in cities across the US to demonstrate the need for access to public transit. Many went to jail for the right to ride. In the early 1990s the County and City of Denver and Denver RTD placed a plaque at the intersection on Colfax where the Atlantis Community held the first inaccessible bus and this was one of the first historic markers in the struggle for disability rights. Wade Blank, a founder of Atlantis and ADAPT, used to take all visitors to see it, and always brought a bottle of Fantastic to clean it up. ADAPT played a major role in gaining passage of the Americans with Disabilities Act, ADA, particularly in ADA’s stringent requirements relating to accessible transit, and its being seen as a civil rights law. Passage of this bill has meant victory for ADAPT in our struggle for lifts on buses. Once the transit issue was won and access was begun to be guaranteed, ADAPT felt it was clear attendant services must be our next issue. In a national planning meeting July 1990, ADAPT targeted the reallocation of one quarter of the federal and state Medicaid dollars from institutional programs to consumer controlled community based programs. ADAPT now also stands for American Disabled For Attendant Programs Today. Since then, ADAPT has decided our name will no longer be an acronym (it’s hard to fit all the issues into those letters) so we are simply ADAPT, but we are still fighting for community services and supports for people with disabilities of all ages.

Kamani Hubbard was born this month in the bay area.  This baby boy is described by his parents and doctors as “healthy but incredibly rare,”  “an interesting and beautiful variation rather than a worrisome thing,” and “remarkable” because he was born with an extra digit on each hand and foot.  This article highlights the notion that each of these extra fingers and toes are “fully formed and functional” and so they might be left alone so as to “help others grasp the importance of embracing difference.”

As these doctors are patting themselves on the back for being so damn open minded, this same article is built upon some deeply disturbing assumptions about normality.  The doctors attempt to dress the issue up as a matter of function.  For instance, Dr. Michael Treece, the family pediatrician righteously proclaims “It’s merely an interesting and beautiful variation rather than a worrisome thing … I would be tempted to leave those fingers in place. I realize children would tease each other over the slightest things, and having extra digits on each hand is more than slight. But imagine what sort of a pianist a 12-fingered person would be imagine what sort of a flamenco guitarist, if nothing else think of their typing skills.”  The journalist covering the story also acts as if the issue at hand is mere function, when he matter of factly states “because the extra digits are functional, it’s not a deformity to be discarded.”  Yet, even in that quote, just below the surface is a viewpoint about aesthetic normality.

The baby’s mother is more straightforward when she says “Nurses and doctors, looked so normal they couldn’t tell, they told me he was six pounds in good health, that was all they said.”  Clearly, this is a case like many others where functionality is conflated with aesthetics in an attempt to obscure ableism of the deepest kind.  Arguably, even though this case will likely NOT result in surgery because this baby was judged to be normal looking enough by the medical establishment, we can place him on a spectrum along side others who were not so lucky.  For example, intersex folks have had unnecessary and painful reconstructive surgery on their sex organs as kids because of how they looked; or adolescent dwarfs sometimes “choose” to have outright torturous limb lengthening surgeries that entail breaking and then separating the long bones in the arms and legs so they are closer to normal looking; or even Ashley X who, at the age of 6 had her growth  “attenuated” with high doses of estrogen and her breast buds and uterus surgically removed so she would be more “dignified” in a body that was “more appropriate for her mental age.”

Philosophers aren’t supposed to get this fired up from what I understand.  We are supposed to be calm and balanced and rational in our deliberations, not write inflammatory blogs filled with scare quotes.  But it’s so hard to be bombarded with these social attitudes that drive the use of biotechnology (sometimes in quite brutish forms) to squeeze children into a box of what normal looks like according to our culture.  Congratulations doc, you are going to allow the 12 fingered wonder to escape your scalpel and grow into f#%*ing Beethoven because his extra fingers were almost unnoticeable.  This kid can increase beautiful diversity, but if his extra fingers were a bit more gimpy looking, off they would come so the other 4th graders don’t make fun of him and he will have an easier time getting a prom date.

Kyle Maynard will kick your @$$ with his dysfunction!!!

That’s my point here, these doctors talk about function, but in the next breath talk about social beauty standards.  Since when is a finger’s “function” to be pleasing to look at so it avoids mockery?  I have a stumpy finger for you, right here doc.

As philosopher Ron Amundson has shown, even if we take this notion of function seriously, it falls apart fast.  Function is ALWAYS a matter of context.  Namely, the contexts of environment and goals.  If someone’s environment fits their body, no matter how it’s put together, they often can function quite nicely.  For example, my computer desk is about 10 inches off the ground and I have written literally thousands of pages from it while sitting on a rug over the past decade of college and grad school.  Almost anyone else would come away with horrid cramps and aches, but I can sit here for hours on end, my body functioning with perfection.  Goals are also a key for this notion of “function.”  What ends are we judging when we look at a body and decide whether it will be functional?  Kyle Maynard, the the recipient of a 2004 ESPN Espy Award for the Best Athlete With A Disability, was a wrestling champion without arms or legs.  His low center of gravity and the fact that he was wrestling in a weight class against men who had much less muscle mass (you can beef up and stay at a low weight if you don’t have arms or legs) meant that he had some advantages on the mat.  If his goal was to slam dunk a basketball, he would have a dysfunction, but for wrestling he was one of the best in his state.

Sometimes, there can be biological dysfunction.  You can have a dangerous heart murmer or kidney failure or diabetes.  But, doc, if you are going to tell me about extra fingers and toes, just be straight with me and say that you cut them off when they are ugly looking.

Recently, my friend Annie passed away at the age of 24.  Some of you may know Annie, as she was a crip in Chicago who was a regular face at the Pride Parade selling her 3eLove Tshirts.  The name of this small business was itself a moral imperative issued by Annie’s basic philosophy of life, “Embrace diversity. Educate your community. Empower each other. Love life.”  3eLove was one of Annie’s many projects.  I don’t think anyone knew the details of all the work she did in the crip community and, surely, only Annie’s mind contained the seeds of the work she planned to do.  It’s my understanding that some of those plans included “beginning her PhD coursework in Community Health, suing the hell out of the state of Illinois for all of the misery that they put her through over P.A. hours, helping me [her brother, Stephen] write a disability education model and marketing it to school districts, writing a book, going on Oprah, and then going on a national ass-kicking tour.”  Those were just her plans for the year 2009 and, knowing Annie, they weren’t that exaggerated. To get a sense of the circumstances of Annie’s passing, check out the facebook note her brother wrote about those series of events.  That is not my story to tell.

Knowing Annie as a person and as an advocate (I don’t like the term, but it’s one she used to describe herself), there seemed to be a unity to her work.  That unity was a radical pride and active rejection of the stigma and shame that society heaps upon crips.

Let me back track a bit.  We are told that the kinds of help we need is not “normal” and that our way of living is one that should happen in isolation.  Even still, this isolation is enforced with the coerced segregation of people with disabilities into nursing homes and institutions.  We are seen as the Other and told that having “pride” means hiding anything about us that deviates from the cultural norms.  Even some of my most powerful activist friends struggle with shame at some of the ways their life is different from the typical.  They want to hide the markings and symbols of their difference because that is what we are told “prideful” people do… they try to normalize and assimilate as much as possible.  I know I have been guilty of this as well throughout my life.

The beautiful, inspirational Anne Marie Hopkins, 1984-2009

This definition of pride is what Annie made an active attempt to completely and utterly demolish.  The insight that Annie taught me is that crip pride is not about banners and marches and t-shirts and policy papers.  Crip pride is as simple to understand as it is morally grueling to achieve — we must live visibly on our own terms, as we are, without apology or shame.  This is what Annie achieved in a way that I have never before witnessed, but hope to witness again in others among our community.

To understand what I am talking about, take a sample of how she lived her life as a crip publicly and without shame by checking out her blog, “Annie D and the Band of Love.”  Some instances of her truly radical pride would be her description of her newly hired personal assistant who, allegedly, dreams of becoming a porn star, “I’m sure wiping ass and hanging out with me will only add to Jame’s qualifications as a cockstar. He is quite pleasant to look at which helps with my well being, porn star or not” … or her cat “For some reason, every cat I have own has always loved to chill in my wheelchair. It always has to be at a very bad time, like when my PAs are trying to move me from my bed to my chair or from the toilet to the chair. He’s always gotta be there. He’s an attention whore I guess” … or her roommate/PA who she keeps around “because he can entertain himself, but we also spend a lot of time together eating, recreating, getting awesome, watching instant netflix, completing our studies, dancing around the apartment, traveling, pooping, urinating, and farting, dog walking, smelling like onions, holding down facilities at UIC, reading and listening to audiobooks.”  Unfortunately, her blog was a relatively new project and so there aren’t as many postings as I wish there were.  I wish Annie had had more time to teach us how to live well.

Annie’s way of living seems to really come up against the “supercrip” narrative in some interesting ways.  The supercrip phenomenon is one of the common possible responses our American culture offers in public interaction.  That is, many times, both strangers and friends will go out of there way to tell a person with a disability how “inspirational” or “amazing” they are, as they go about their daily routine.  Of course, the unspoken premise behind this is a very low set of expectations for people with disabilities more broadly.  “Wow!  Look at that! You go out to eat at restaurants on the weekends and sometimes see a movie!”  The harm of the supercrip narrative is that, by setting up everyday activities as “amazing,” it obscures the idea that people with disabilities SHOULD be doing these everyday things as an accepted and integrated part of the community.  That is, its foundation is the notion that disability itself is something that is overcome rather than social and environmental barriers.  Put another way, the problem with the supercrip narrative is that it implies that the disabled life is, fundamentally, of less value.  The only way average, everyday activities can be seen as amazing and inspirational is if that person is starting off from a very dismal place.  Supercrips are seen as the exception to the rule of disability misery.

Professor Charles Xavier -- some crips really DO have super powers!!!

So, what then, are we to make of Annie’s celebration of everyday life?  If we understand her as inspirational or amazing, are we just dressing up the supercrip narrative in new clothes?  I really don’t think that is the case.  In fact, I think what Annie was doing was dismantling some of those hidden premises to the supercrip narrative.  By rejecting the shame in having her butt wiped and living pridefully, Annie was rejecting the notion that disability is something you “overcome.”  For Annie, her disability was part of her joy in living.  She unapologetically displayed how she had a good life not DESPITE her disability but WITH her disability.  If we could all live like Annie, someday the only supercrips around will be the X-Men.

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!”

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.

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.