PhilosopherCrip

The following is an interview I conducted with my good friend, Bethany, who recently launched the blog CripConfessions.com.  I must confess that I have thought of Bethany as a kindred spirit, ever since meeting her.  As fellow activist, disability studies scholar, and little person, we have shared a great deal over the years and here is a small tidbit for you all.  Go read her blog, it’s brilliant!

The radiantly brilliant, Bethany

Joe: I like the ring of your blog name, tell me more. What and why are you “confessing” and who is your confessor?

Bethany: I may as well start this sexy interview with a confession: I’m a nerd and proud of it. I LOVE alliterations and have embraced the label ‘crip.’ It signals disability pride and serves as a fun verbal slap on the face of the ableist world. Thus I needed a hot word to that started with ‘c’ in my title to satiate my need for mental masturbation.

Additionally, the overall purpose of my blog is to provide a platform for me to confess (i.e. share ideas that are traditionally not voiced) thoughts that I feel like disabled people just aren’t talking about publically, such as internalized ableism, the meanings of dating a nondisabled person, etc. I want to confess my truth because I think it can be a healthy catalyst for a communicative revolution. It is time we at least talk about these things with each other. I feel like here is a political impetus to be silent about some of the frustrating and painful aspects of disability, as we are all supposed to be pushing a disability positive narrative. Frankly, I feel that approach is not emotionally honest and actually can do us more harm than good.

Joe: What moved you to start a blog? What do you hope to accomplish with it?

Bethany: A noticed a disability blog carnival coming up on relationships and wanted to write something about my thoughts on my relationship. Being in a relationship with a nondisabled person has caused me to really think a lot of the desirability of my body and my ability to care. I wanted to share these thoughts with other disabled people in hopes of getting a conversation started on the topic. That’s one of my favorite things about social media – I can connect to a larger community of crips than those in my area. I feel connected to my people and thrive on that.

Also, I have been reading and thinking about the role of social media in translating research findings into mainstream culture. As a scholar-activist, I need to be intellectually rigorous but I also need to transmit these ideas to larger culture in order to try to create substantive social change. I see blogging, tweeting and Facebooking as wonderful outlets to help realize this desire. I have also decided I want to get into film making – because I realized if I disdain most representations of disabled people, why shouldn’t I create the media I want to see?

As I have said, I would like my blog to be a communicative catalyst to get people talking about things that we shy away from. I feel like confessing my truth – and thereby rendering myself really vulnerable publicly – can provide space for others to do the same. Through telling my truth, it may make it easier for others to be emotionally naked because we would all know we are not alone.

Joe: Talking about accomplishments, what kind of work do you do when you aren’t blogging? How do you see CripConfessions.com fitting in with the rest of your work in the disability community?

Bethany: I’m a trained lawyer and a sexologist. At the moment, I am clinical professor and policy analyst in the Center for Leadership in Disability at Georgia State University. I teach some classes, capacity build with our community partners, host events, and advise a disability student group on campus. I diligently strive to infuse everything I do with radical crip politics so that I remain true to my life purpose – the social amelioration of people with disabilities. When I was 20 I decided to devote my life to disability and I am sticking with that.

CripConfeesions fits into my overall work because I am devoted to raising awareness and creating social change for disabled people. Through blog posting, I hope to add to my other work by providing a personal glimpse into my nuanced reality. I want more people to understand that disability is not a personal tragedy, but is an artful way of being. Of course, as a sexologist, I also want people to see disabled people as desirable and viable sexual/love partners so I hope some of my posts make some people realize how deliciously sexy disabled people are. CripConfessions then is just one part of the overall revolution of consciousness I seek to be a part of.

And it’s really exciting that we are building a community of young scholar-activists. We are the upcoming leaders of our movement and I think it’s really beautiful that we support each other and our work. We need each other!

Bethany and I making a crip sandwich out of her partner, Sara, at the Atlanta ADAPT Action

Joe: Like myself, I have always thought of you as someone that fancies herself to be both a scholar and an activist. Do these roles ever come into conflict for you? Do you ever experience any dissonance when trying to work in two arenas with such different cultures and sets of values?

Bethany: You’re right; I’m a scholar-activist. The roles do conflict at times because my radical politics do not always feel satisfied in the work place. People do not want to hear about privilege and power at work; they want to do their jobs to get paid so they can live. But as an activist I can’t and won’t silence myself, sometimes to the determent of my mental health. A colleague recently told me that it must be exhausting to constantly view the world as animus filled against certain people and he is right – but that will not stop me. More people need to be critically conscious about their realities and I think it could be even more emotionally exhausting if I were silent about the issues I care most about.

Also, though the complaint has been levied by many people – it’s worth repeating: the academic world is not accessible to most people and some of the revolutionary ideas that are created in the ivory tower never reach the masses. I want to marry these two things. I want what I write and think about academically to become reality. This is why I have tried to work toward making my work more accessible; blogging has really helped me in this shift. I want to change the world not just publish or perish.

Joe: Why have you chosen to do both? Couldn’t such tension and conflicts be avoided by doing just one or the other? Is this a matter of personal life satisfaction or is it that you think your work is better served?

Bethany: Sure tension could be avoided if I would just shut-up and consent to being a cog in the interlocking systems of oppression that screw over countless people. I could have been a lawyer – slaving away at a job that means nothing to me for good pay but I would have hated myself and my life. I cannot live my life in a way that is not true to my crip ethos. It took years to be able to look in the mirror without cringing at my disabled body and I want to do everything I can to change social views of disability so people do not have to go through the self-loathing that I and so many of my comrades go through.

And honestly, the grappling of tension in my roles is good fodder for debates and adding nuance to my arguments – which is intellectually orgasmic! Being a person with multiple locations/identities and passions is the kind of human I want to be. It’s really the only way I know how to live.

Joe: A lot of folks that work in the disability community seem to have their niche passions and while I have met a few people really interested in the intersections of disability and sexuality, none have really made it into their life’s work, like you are. What’s the deal here? Why is crip sex so important to you personally and professionally?

Bethany: On a very base, primal level, I confess, I am a hedonist; I love pleasure.

But on a deeper level, I experienced a confluence of a few really pivotal things that shifted my life focus to sexuality. In 2005, I was in law school and with every passing day there, I lost faith in the law to create social change (the reason I went to law school in the first place). That spring I hosted a conference about sexuality and disability. It was the crowning achievement of the many events I hosted at the University of Florida because it ROCKED the campus! I brought together some really amazing people including artist/activist Sunny Taylor, motivational speaker Greg Smith, crip sexologist (and my mentor) Dr. Mitchell Tepper, and former adult film-star Bridget the Midget Powerz. I was right in thinking a former porn star would attract a crowd, even for a disability focused event. We had a great turn-out for the event despite the downpour of rain and we addressed some serious issues of internalized shame, feeling undesirable and discovering sexual pleasure. In the process, I learned how comfortable I am with talking about sexuality and that it is a real professional asset. The whole experience was really profound and the after-party was one of the best parties I have EVER been to

Less than a month later, I lost the first man I ever loved to suicide. Karl was a beautiful Norwegian that I met at a Rehabilitation International conference in Oslo. We shared views on disability pride, using the media as a tool for social change, among other similarities. I adored the man and spoke to him via phone and email as often as I could. We spoke of me moving to Norway after completing law school – and despite my serious weather bigotry (I’m a Florida girl), I was ready to move just to love him.

One morning he called me around 5 am to confess to me something he had struggled with telling me since we meet a year earlier. He explained he did not have normative erectile functioning stemming from his spinal cord injury he incurred 16 years before his confession to me. I explained to him that his penis was not what attracted me to him, that sex was bigger than a penis and that he could give and receive a lot of sexual pleasure. But my words did not meet him. That was the last we talked. I learned from his sister about a month later that he had hanged himself. It was one of the most devastating periods in my life and I credit my friends for keeping me alive. I struggled to eat during that period as I just did not want to take care of myself. I cried and felt purposeless for months.

I realized in the grieving process that I was not just mourning Karl’s death – but I was mourning all the other disabled people who suffer in silence over the issues of sexuality. I vowed then to devote my life to changing the conception of crip sexuality so that other people would not hurt the way Karl did.

This gets to the point of the importance of confessing; if Karl had confessed his pain sooner perhaps he could have processed it instead of ending his life.

Karl, a lost comrade

This semester, I’m taking a philosophy course on international development ethics and a major theme in this literature is the controversy over what we owe to whom and why.  Some would argue that, morally, we have a stronger responsibility to prevent or ease the suffering of those we have some kind of relationship with.  It is probably too easy to reduce this sort of perspective to an argument favoring a sort of parochialism or nationalism.  The “charity starts at home” camp can use this kind of thinking to ignore the sufferings of others who speak a different language, practice a different religion, or have a different skin color.  However, this sort of reduction is too easy.  Surely, even the most radical progressive would agree we DO owe our own family members more than we would a stranger.  I know that I am all for challenging power structures and redistributing wealth in the US and globally, and am willing to work for radical changes toward these ends.  However, at the end of the day, I’m not about to offer floor space and an air mattress to a random homeless person in Lansing, but if a close friend or family member needs this kind of thing they know my door is always open.  I have helped friends in this way and would gladly do it again.  I think most people feel this way.  Some folks put more weight on relationships than others do when it comes to our moral obligations to help and there are differences regarding which relationships are emphasized, but I think we all share an intuition that relationships matter in a very deep way.

Sometimes, the identities we have seem to entail certain relationships, and with those relationships come moral responsibilities.  For me, when disaster recently hit Haiti, one of my first reactions was to want to reach out to the disability community there, knowing that most times people with disabilities are especially vulnerable in natural disaster situations (just by virtue of the fact that people with disabilities are vulnerable in general because of poverty and lack of political power).  Of course, with a disaster like this comes new disabilities, as well, and my first thoughts were toward those folks especially.

I became aware of Portlight Strategies, a non-profit disaster relief organization that organizes relief efforts on the web and specifically targets facilities that are helping people with disabilities.   Soon, a friend brought to my attention an organization that was partnered with others and offered a comprehensive list of disability aware relief efforts, Mobility International USA.  I donated a (very small) sum, posted these links to my facebook profile, and continued to go about my business of living.

Of course, this was not nearly enough, but it was what I thought I could do at this point in my life as a grad student with very limited time and income.  Ironically, this gets me back to my original point of relationships at least somewhat determining our responsibilities.  To be sure, if my family was in Haiti, I would have had a very different response.  I recognize this has a lot to do with my own privilege.  As a white, middle class American, I could make myself feel warm and fuzzy and then carry on my daily life without thinking much more about the horror being experienced “over there.”  Even the suffering of my disabled brothers and sisters is distant enough that I can set it aside to read for class or talk on the phone or see a movie or play a game of scrabble or have a beer.

As I continued to go about my business of living, my living often comes back to reflecting on events in my life and the world in general and this was no exception.  The question I am reflecting on is “what about the disability identity binds me to the crips in Haiti and makes me feel more responsible to them than I would others?”  When we start to unpack this question, it’s not as straightforward as we might think.

A Map of Haiti

It may be factually true that people with disabilities are more vulnerable than others in times of disaster and often do not receive relief services because of inaccessibility or outright bigotry.  Yet, that wouldn’t itself explain my reaction.  Surely, the same is true for other kinds of oppressed groups (gender and class especially), but my heart and mind did not immediately go to those marginalized populations and neither did my energy or resources.

Something must have moved me to want to reach out to people with disabilities in particular.  I think this is because I identify so strongly as being part of a larger disability community.  That is, like a family, I felt that I was part of a group that included disabled people in Haiti.  That is, I had some sort of relationship with them that made me more responsible for their well being than I would be toward your average Haitian, at least to some degree.  This idea didn’t really get me very far.  I found myself trying to understand what this compelling relationship was and whether it was something that actually should compel me.

Surely, the bio-medical facts of disability do not, by themselves, create a community.  The only folks I’d personally have  much in common with bio-medically would be Haitians with dwarfism that use a wheelchair.  Feeling some kind of obligation toward them based on mere biological similarity would be absurd.  It would be like feeling community with other people who have brown eyes or a slightly cleft chin.

Rather, the sense of community I felt toward Haitians with disabilities must have something to do with how disability mediates one’s experience.  The sense of community I had with the disabled of Haiti had something to do with a common experience that was shaped by our disability.  But what is this common experience?  Surely, it isn’t anything to do with a particular diagnosis.  I don’t have the same phenomenal experiences as someone with an amputated limb or a spinal chord injury or a brain injury.  That is, I have never felt phantom pain or lost bowel/bladder control or was off balance.  Instead, my disability identity that leads to this sense of community through common experience has something to do with having experienced ableism.  This leads to 2 further questions, both of which are too big to really be explored in a blog.  The best I can do is state them in a way that will get people thinking along these lines.

1) Is the primary experience of disability a negative one of oppression and if so, what does this mean for our community?  By analogy, racism has something to do with the identity politics of race, but surely rich, vital cultures are at the center of the African American or Latino communities.  Likewise, sexism has something to do with being female, but surely there are uniquely female experiences that are positive ones.  Is the harm of ableism the only thing that binds together the disability community and makes my experience something like that of a Haitian disabled man’s?  What does it mean for a community to define their identity purely in negative terms in this way?  Are there other alternatives?

2)  How “common” is the experience of disability REALLY?  As a white, physically disabled, highly educated, middle class straight man, does the ableism I grapple with in my everyday experience look anything like what a poor Haitian is experiencing during this crisis?  What characterizes this ableism that “we” experience and whose experience gets to be the defining one?  Can I speak to anyone else’s experience in this regard?  Would the tools I use to understand and struggle with ableism like the social model of disability or “independent living philosophy” even make sense to someone in the context of post-earthquake Haiti?  Do I have a right to even think that my experience is like theirs in some way, being that ableism is a culturally defined oppression and I am utterly ignorant of their culture?

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.

I am not a lawyer and don’t know very much about interpreting law. However, it seems to me that the case of Micah Fialka-Feldman is a pretty classic example of those in power hiding behind “policy” as a way of masking their discrimination. Fialka-Feldman is 24 year old student with a mild intellectual disability who wants to live on the campus of Oakland University near Detroit. Micah attends 16 credit hours of classes per week and pays full time tuition. Yet, University trustees and officials have repeatedly rejected his requests to live on campus and forced him take a 2 hour bus ride each day to attend their university. They justify this decision by pointing to their “policy” of only allowing students in degree granting programs to live in one of their 1,800 dorm rooms, some of which remain vacant. The logic behind this decision, which has been tentatively supported by a federal judge, is that Micah would be seeking unequal opportunity by asking that the policy be waived for him when other continuing education students were denied the opportunity to live on campus.

On the face of it, this seems like it may be a justifiable decision, right? After all, the university is not JUST rejecting Micah’s claim on housing resources, but all 1,400 continuing education students who are taking classes but not earning a degree (although, it’s my understanding that there was some backpedaling done to try and be consistent with this policy and some English as a Second Language students were no longer allowed to live in the dorms, once it was apparent a law suit was in the works). Let’s put the ESL cases aside and look only at the “facts” that are being reported in the main stream media. That is, let us take the university at its word and consider the justifiability of denying Micah housing because of this policy.

Micah on his campus

First, it needs to be understood that virtually EVERY case of discrimination and bigotry can be framed in terms of a “policy.” The rhetoric is always the same. Opponents of same sex marriage argue that they have nothing against gay people, but don’t want to give them the “special privilege” of a state sanctioned marriage that can only happen by waiving the policy that marriage is defined as being between one man and one woman. Women are not being discriminated against when they are denied employment and advancement, but rather, there is a policy in place that excludes people who may become pregnant at some point. People with disabilities aren’t being segregated and incarcerated in nursing homes rather than receiving support services while living in their own homes with friends and family, they are merely being medically treated in accordance with the policies of Medicaid.

The fact is, policies aren’t handed down from God, accidentally resulting in some discrimination. This policy is not some kind of natural law. Policies are MANUFACTURED , sometimes according to bigoted attitudes that are already in place. The activist has always recognized this and never accepted the excuse of “that’s our policy.” Essentially, policies are the codification of existing habits, many of which are chauvinistic in various ways.

The question to ask is not “why does Micah deserve special treatment and a waiver of this policy?” but “why is the policy written in this way and what else could it look like?” When we ask the question in that way, it becomes clear that this policy is a thinly veiled case of discrimination. There is no housing crunch at Oakland University. I can hardly imagine that all of the 1,400 continuing ed students would want to live on campus, squeezing out the matriculated students. Typically, continuing ed students are not of typical college age and lifestyle and it would be absurd to think that they will flock to the dormitories.

So, if the possibility of a housing crisis is not driving the manufacture of this policy, what could be the justification for keeping away “non-degree earning students?” I have seen plenty of references to the “policy” justifying the exclusion of Micah from living on campus, but where is the justification of the policy itself? Why is whether a student is enrolled in a degree granting program or not at all relevant to whether they should be able to live on campus? Of course, the University could not allow just anyone who wishes to live in university housing to do so. It could not be the case that anyone off the street is allowed to move in, regardless of affiliation with the academic institution. However, why is the bright line drawn at whether a student is earning credit toward a degree? How is this at all relevant? Wouldn’t it make more sense to draw the line at whether a student is enrolled full time and needs to have space on campus because she is spending a lot of time there?

So, if there is no housing crunch at Oakland U that would be impacted by a more inclusive policy and there is no obvious connection between earning degree credits and living on campus, why has the university chosen to manufacture this policy in this way? What existing habits are being codified here and are they worth preserving?

Is it unreasonable to suggest that this policy is a throwback to the dark ages of not wanting to live with “those kinds of people?” Is it far fetched to think that a policy of keeping non-matriculated students off campus is a desire to keep at arms length those who differ from us in age, class, and, yes, disability?

Finally, as an educator and especially as an “almost philosopher,” some critical questions that were recently raised by Micah’s dad struck a strong chord with me. When trying to clarify our thoughts on this situation we should not limit ourselves to a critique of this particular policy, but also try to think in new ways about some of the most fundamental assumptions we make about education. This situation highlights in some very interesting ways questions about what a student is and what the purpose of education ought to be. I will leave these for another post.

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!”

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.

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).