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).
