PhilosopherCrip

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.

It’s been a week since I returned from Little People of America’s (LPA) national conference in Brooklyn, NY.   Anyone who has been to an LPA conference knows that it takes at least that long to recover.  As expected, the days were spent in workshops and boardrooms and restaurants, while the evenings were spent out in the city or at the dance until the wee hours.  What was different this year was a drastic shift in how LPA presented the event and our organization to the public at large.  I think most members felt this sea change.  For the first time, we took our “culture war” to the front lines rather than simply reacting to the media and it’s chronic offenses.  That is, LPA has finally started to push back against the centuries of mockery.

I would like to respectfully disagree with the claim made by the editors of lpaonline.org that “Similar to past conferences, LPA used the opportunity to deliver a message to the general population that people of short stature, like other groups, strive for equal access to education, employment and social opportunities for the chance to live fulfilling and productive lives.”  It was not mere coincidence that our message took hold this year, as opposed to other years.  Rather, it was that we have finally come together in consensus around the “M-Word” (midget), passing an official resolution that it is an unacceptable way to describe folks with dwarfism.  In addition, we made the unprecedented move of filing an official FCC complaint against a troubling episode of Celebrety Apprentice, in which the M-Word is dropped 12 times and Joan Rivers offers “Well…I have a terrace. We can hang them [midgets] out on my terrace” during a discussion of how best to objectify LPs for marketing/advertising purposes.  [See the above link to LPA's hyper-link to download the complaint form and help out!]

For a detailed discussion of why the M-Word is troubling to our community and the complexities of the LP community’s relationship with the entertainment industry, check out this Salon.com article.  I won’t retread the ground it covers, but have been thinking about how I can personally reconcile my desire to see the M-Word go with my strong commitment to free-speech, which is one of the few negative responses to LPA’s campaign that I think warrants serious consideration.

The always classy Donald Trump...

Theoretically, a commitment to free speech protects those who are fewer in number and/or lesser in power.  That is, free speech protections are not needed to preserve the right of the powerful to express their ideas in any way they find suitable.  Rather, free speech is what preserves the dissenter’s right to speak his mind.  It does not exist to preserve the rights of the major network news anchor to report on the “swine flu,” but the disabled, poor, war-veteran-turned-protester to burn a flag in the street to express his angst at an unjust war.  Because we supposedly cannot predict which opinions will become popular among the powerful, we must protect everyone’s ability to express themselves, in the hope that the “market of ideas” will ensure that the truth prevails.

So, what do we do when, in practice, the protection of free speech is used to condone actions of oppression by the powerful?  For instance, when it is used to protect celebrities on Donald Trump’s TV show and their disparaging remarks about a group that is taken as culturally acceptable to ridicule and mock in mainstream media?  Doesn’t this seem counterproductive to the goal of protecting the vulnerable?  Too often, it seems, “free expression” is used to justify the powerful’s refusal to accept limits on how they exert their cultural dominance over the powerless.  Surely, this is not just true for LPs and others with disabilities, but has also been historically (and still is) the case for women, queer folks, people of color, and the rest of the “laundry list of oppression.”  How many times have we heard “Political correctness is such bull shit! These fuckin’ [insert favorite slur here] can’t tell me what to say, this is America and I have free speech!”?

What is the upshot of this disconnect between theory and practice?  How do we protect the freedom to dissent while not also exacerbating the suffering of those who are oppressed?  Surely, we cannot make objective distinctions between these two kinds cases without having those judgments infected by our own biases.

I think, whether we intended to or not, LPA has stumbled upon a practical solution to this problem, at least in our case.  While it has been described in the media as a “ban” on the M Word, the action LPA is actually taking is to file a series of complaints with the FCC about a particular show.  How we define success here is important.   If our FCC campaign is aiming to add the word “Midget” to the 7 that you get fined for saying on the air, then perhaps we haven’t made much headway on the free-speech vs. ridicule issue.  However, it seems that a more realistic, and perhaps more favorable, outcome would be to use this as a way to raise the profile of our repeated objections to the public ridicule of people with dwarfism.  The FCC campaign has earned slots on cable news shows and an AP article that has run in hundreds of outlets, while our earlier attempts have been a mere whisper in the storm.  I am hopeful that this will, at least, raise awareness among those who want to avoid ridicule and keep LPA from being somewhat complicit in a form of cultural oppression through inaction.

Sure, even a ban won’t keep Howard Stern from dropping the M Bomb (he’s on Satellite now apparently, anyway), but this level of media coverage SHOULD help ignorant, but otherwise well meaning folks to gain exposure to the dwarfism community beyond what is portrayed by the Stern types.

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

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

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

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

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

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

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…”

With the fierce primary battle between Barack Obama and Hillary Clinton and today’s announcement of McCain’s running mate Sarah Palin, this presidential election has been and will continue to be thick with identity politics. That is, individual members of historically marginalized groups are finally at the point of sharing real power in our country and other members of those same groups are taking notice and often voting according to that shared identity. Being a member of a marginalized group, I can appreciate the desire to vote according to that identity.

I absolutely believe that other folks with highly visible physical differences (like my dwarfism) and mobility disabilities (like my use of a power chair) understand a part of “what it’s like to be me” in ways that an able bodied person never could. Close friends and family have a strong sense of empathy and do feel my outrage or pain when they are present as I am being marginalized or ridiculed, but they do not know what it’s like to live every moment of your life with such marginalization or ridicule right around the corner. For those that are close to me, their empathetic suffering is a temporary condition.

So it is that I understand that even complete strangers who are genuine members of a marginalized group can profoundly and uniquely understand each other’s lived experience in some ways (but CERTAINLY not all ways). Because of this feeling that other members of our group “get it” just because they share this identity, it’s easy to want to support them in their political ambitions. We trust people like ourselves more easily and we see their success as intimately bound up with our success. That is why people of color and women came out in droves this year to support Barack and Hillary, respectively.

However, if we were to practice identity politics in a completely uncritical way, we run the risk of tokenizing ourselves. In fact, I believe this trap is what John McCain is betting on in choosing a female Veep today.

When someone is tokenized, they are deliberately placed in a social or political position that gives the appearance of inclusiveness. In other words, it is a dominant group’s attempt to satiate a subjugated group by throwing them a bone. A tokenized person with a disability in a mainstream classroom provides ammunition for a school board to claim that they are not discriminatory by segregating everyone else in a “special” education back room, “But look! We are inclusive where that kind of thing is appropriate!”

As voters, if we vote for someone just because they superficially share our marginalized identity, even if they support policies that strike directly against our interests, we tokenize that candidate. Sarah Palin has the biology of a woman, but the troubling brand of fiercely conservative politics that she shares with John McCain does nothing to help the ordinary working class American woman, who is trying to make good amidst a foreign and domestic crisis. Conservatism does nothing but preserve the status quo, which is largely a system of oppression for everyday women.

It’s curious that MCain is not willing to tokenize himself by talking publically about his disability. Perhaps the stigma of disability is too strong and too internalized for him to come to terms with the idea that he himself is disabled – he sustained permanent injuries from his time as a prisoner of war and collects a disability pension from the Navy. Or, it’s likely that he (rightly) believes that disability is not as unified an identity as gender or race and so most people with a disability would not vote for him based on that identity. One thing is certain, as long as John McCain opposes policies that would free our people (like the Community Choice Act or universal health care), I won’t vote for him no matter how cripped out he is.