PhilosopherCrip

I haven’t had time, with the beginning of a very frantic semester, to write a new blog in a while.  While this isn’t really an original essay, I think readers will take away something from the video below where I and others are interviewed by the Michigan Disability Rights Coalition about the meaning of Disability Pride (turn on captioning by clicking the arrow button on the bottom right of the viewer).  The video is followed up by a paste of an email dialogue between myself and a friend who identifies as person with a disability and just began law school at MSU.  I think it gets at the heart of why pride is so central to our movement.

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.

This will be a quick post in which I try to check my own privilege.  My last few posts have torn into Jerry Lewis pretty hard, while an earlier one warns against demonizing public figures who have bad, yet common opinions about disability.  While I don’t agree with Peter Singer’s reasoning or conclusions regarding disability policy, I quote Harriet McBride Johnson’s line of thought that we ought to not demonize people like Singer for holding the opinions he does because they are common opinions.  That is, his philosophy is based in a social ignorance about disability and so it wrong to use him as a whipping boy or symbol of our opposition.  He is a human being that is just as flawed as the man on the street (or post office, or kitchen table, etc.) that, more silently, concurs with his opinions.  For more on this, see below.

So, why is it that I am so quick to agree with Harriet about Peter while being so quick to condemn Jerry?  Ought we not grant the same benefit of the doubt to Jerry?  Is this a failure to treat likes alike?  Harriet does the same thing in her book, Too Late to Die Young.  Jerry’s condemnation is so fundamental to her story that she named the entire thing in honor of her realization that his bigotry was grounded in ignorance (she believed for many years that she would die young because of the tragic imagery of the MDA Telethon).  Yet, as I argue below, the major point of Unspeakable Conversations is that we need to rage against ideologies and systems of oppression without demonizing individuals.

Have Harriet and I both got it wrong?  Do we extend our common courtesy to Singer because he speaks our language?  He has very dangerous opinions, but he dresses them up in the language of measured, rational argument and so they are somehow more worthy of our respect?  Lewis is a bloated, aging comic with a hot temper who supplies us with an abundance of sound bites.  Singer is much more palatable with his gentle mannerisms and endowed chair at Princeton.  At the end of the day, their basic beliefs about disability are STRIKINGLY similar.  Jerry thinks chair users need to become good at “being a half a person” and Singer believes we have less opportunity to satisfy our preferences and enjoy life.  Isn’t this almost EXACTLY the same thing?  Surely, both men influence public opinion in a big way, one with a telethon being beamed into millions of households and the other by teaching the ruling elite at Princeton.   Why then, do Harriet and I respond so differently to these two men?

It’s possible that it is just a matter of privilege.  That is, I have my own biases about social class, age, and education that make me more likely to have respect and perhaps empathy for Singer but not Lewis.

Maybe, for Harriet it was a strategic move rather than a matter of prejudice?  I think in Singer’s case we may have hope of having a measured debate with him, changing his mind and the mind of his followers with our superior arguments.  For Lewis, with his crude words, we may have a better chance of taking him on with protests, petitions, and perhaps an arrest action or 2.  I obviously have no idea whether Harriet ever considered this conundrum she has set up, but do see how Singer would appear at least on the surface as more persuadable.  Lewis responds to criticism with anger and threats that we need to stay out of public view, while Singer invites his opponent to have a public dialogue.  So perhaps it is not the difference between demonizing one man while defending the other but rather reacting with a style that is strategically the most likely to work?  Or, am I again just justifying my privilege in a new way?

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

Many of my friends, colleagues, and family members have heard me rant about pity on many occasions. I am very proud of a recent seminar paper I am preparing for future presentation and publication (hopefully) that is titled “Why We Want to ‘Piss On Pity, or How The Ideology of Pity Is a Social Harm to People with Disabilities.” Surely, this blog will serve as a way to test drive many of my ideas about pity, as I try to sharpen them and work them out more fully. One of the main challenges raised every time I mention pity as a harm is the idea that there is something very positive that is closely related to and sometimes confused with pity. This “something” is sometimes called compassion or empathy or sympathy.

While I agree that this something is sometimes linked to pity in our thoughts somehow, I want to argue that this something goes so far beyond mere pity that it becomes its opposite. For the sake of this essay, I will call this something empathy.

While I am not going to take the time to completely lay out my argument for why pity is a harm, let’s start by saying that pity depends on the existence of a harmful power relation and serves as a way of preserving that power relation. For pity to exist, there must be a power inequality between the pitier and the pitiful. Someone must be better off than someone else and look down upon them from a perch of privilege. Pity preserves this set of pre-conditions because it does not acknowledge or work to change this power relation. In fact, pity treats this power relation as inevitable and natural. Responding to someone’s suffering with an act of pity obscures the fact that the root causes of their suffering could be changed. For example, let us say that someone responded with pity to a person with a mobility disability who could not access a restaurant because of a staircase. That able bodied person may express their pity with words of sorrow at the chair user’s horrid predicament at not being able to walk up the stairs. Perhaps, the able bodied person may offer to get a take out order for the chair user. However, these responses do not at all respond to the fact that the chair user could enter the restaurant if it was ramped. Once you make the move to thinking about the problem in this way, you move away from a response of pity and toward a response of justice. A ramped doorway is not an act of pity, but an act that equalizes people’s power status and contributes to considerations of justice.

However, just as an unequal power relation is a pre-condition for the existence of pity, it seems to me that empathy is a pre-condition to the existence of justice. The “golden rule” or the ability to place yourself in the situation of the suffering other in a genuine way (aka empathy) dismantles this power relation. When we are able to authentically imagine ourselves in the situation of the person who is suffering, we recognize that mere pity is harmful and that we must address the power relation itself that has created this suffering.

While talking to a friend who also has dwarfism a few days ago, she told me a story about the first time she meant someone that was homeless and had dwarfism. She was struck by their suffering, gave them a hug, and bought them lunch. The fact that she hugged this man speaks to me that this was an act of empathy and not mere pity. That is, she treated him as a respected friend rather than an other she was looking down upon. Without any prompting, she explained her actions as motivated by a sense that “that could have been me…” She recognized that the injustices in our society create a system where folks with disabilities like dwarfism (and every other kind of difference that would be characterized as disabling) face huge challenges of bigotry that severely limit their flourishing. With these words of “that could have been me…” she recognized that it was a matter of chance that she was born into a family that had the disposition and the means to not turn her over to the state for a life of institutionalization. The chance of her circumstances allowed her to join Little People of America and gain access to a network of support and eventually get a college degree so that she would not face the same suffering of this man on the street. My friend recognized that it was an accident of fate that positioned her to help this man in the way that she could and that this was a matter of injustice. This friend has developed a perceptive empathy for these kinds of situations and these experiences have moved her to become involved in the disability movement and pursue a law degree so she can address these matters of injustice head on. I think her desire to fight for and with the most marginalized folks with disabilities all comes back to her ability to say “that could have been me…”