PhilosopherCrip

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.

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).