PhilosopherCrip

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.

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).