Last week, I received paperwork from the local school district to fill out for my son. “Preschoolers with Disabilities” was written at the top. This caught me off guard for two reasons: first, I can’t believe my baby is ready for preschool already! But more importantly, “Disabilities?!” I’ve spent the last two years trying to explain to family and friends that deafness is not a disability. My husband and I are working hard to make sure our son knows he is not disabled and can be anything he wants to be. But in order to get the assistance my son needs for the best education, I sometimes feel I have to work within the confines of the system.
I’ve heard mixed reviews on the Americans with Disabilities Act; some feel it empowers them and finally provides equal access to things for all sorts of “disabilities,” ranging from wheelchair-accessible buses to closed captioned television programs. But especially in regards to deafness, it also seems limiting by the very fact that they attach the label: disabled. Granted, “disabled” sounds like an improvement from “handicapped,” an inaccurate and demeaning etymology (I learned this from a friend with cerebral palsy). Still, when “disabled” is misapplied to the d/Deaf, or even other groups currently under that umbrella term, is it time for a new word? Is it wrong to accept the assistance for my son’s education, even though it seems to demean while trying to empower? Do the ends, in this case, justify the means? I think it’s wonderful that the school district has to provide the services he needs, but I suppose I could stand on my soapbox and refuse the services on principle. But what good does that do my son?
I rectified this conundrum in my own head by considering the idea that a person can have a disability without it being disabling. What I mean by that is that my son is lacking the ability to hear, but I don’t want him to think he is at all limited by that. Semantics? Splitting hairs? Perhaps. But if I define ‘disability’ as simply the lack of an ability, in this case hearing, the word doesn’t seem so disenfranchising. Is there another word we could use? Honestly, I’m asking. Is there a stigma-free word that simply states a fact that a person lacks something that other people have, without it implying that there’s something wrong with that? I had my first CPSE meeting, and that acronym I can tolerate a little more. “Special Education” or “special needs” are, in my mind, fairly accurate descriptions of the accommodations the school will need to provide for my son, though there is still a stigma attached to the former. When I was in school, it was (unfairly) assumed that “special education” meant mentally disabled, learning disabled, low IQ, and kids were called “stupid” for being in a special education classroom (clearly not an acceptable term, regardless of the special need).
So how do we move forward for the next eighteen years of my son’s education? Is it worth fighting the government and schools just to change the terminology? For me as an individual, probably not. But perhaps in a broader scope with the support of a representing group, over time we might be able to improve the way the world views the needs of d/Deaf people, starting with the disability label. In the meantime, do we work within the system to get what we need, while I try to explain to my son at a tender age that the world just isn’t fair and has mislabeled him? Perhaps that’s a valuable lesson anyway, as it is something he likely will face his entire life. The government mislabels and lumps people into groups all the time; I was appalled to learn that maternity leave is considered a “short-term disability.” But it did get me eight weeks of pay that I happily accepted. We all know that deaf education is far from perfect (I’ll save that for another article) but the ADA, IDEA, and CPSE are providing my son with tools that he needs for education that I couldn’t otherwise pay for. Perhaps I should just be happy for that.