People love labels. We love to put things, and people, into boxes so that we understand everything and no one is ever uncomfortable or has to think for themselves. We are just now beginning to understand how all of human experience is a spectrum.
One label, one box that few people ever think of is that of disability. For certain things – things for which there are limits and laws written, like disabled parking spaces, someone qualified like a doctor decides if the person meets certain criteria (i.e. can that person walk unassisted 200 feet). But for most of the world of disability, a person must chose their own label. (Yes, I know it is grammatically incorrect, I am trying to avoid gender pronouns – get used to me doing this). It took me years after I was granted a disabled parking spot before I thought of myself as “disabled.”
The problem is, to many both outside and inside the disability community, I may not be “disabled enough.” I can walk short distances, though with aid, but I use a wheelchair in daily life. I get people arguing with me about my wheelchair use, saying that since I can walk at all, I should always do so, and I am therefore not disabled “enough” to call myself that.
I met with a wonderful woman in Disneyland this weekend who has had much of the same problem. She has hearing loss, signs fluently, but can hear a little (not sure how much or how well) and can speak to communicate when she needs to. So, is she deaf or hard of hearing (HoH)? Who gets to decide? The Deaf community often rejects her, she told me, because her hearing loss is not complete and she speaks quite well. Nor is she part of the hearing world – she still needs ASL whenever possible and this is her primary language of communication.
If the Disability Community and/or the Deaf Community is going to survive and thrive, especially as modern technology like Cochlear Implants and better surgeries progress, we need to learn to accept the fact that (within reason) people need to be allowed to self-identify.
Self Identify. It is a difficult concept for many, but in reality what that means is that if a person says they are disabled, then we must accept them as such. Obviously there will always be people who are either looking for a way to abuse the system or join a group they have no real tie to. For example, I am learning ASL, and my genetic condition has been known to cause random and sudden hearing loss. This means that I may have a link to the Deaf community, but I am not actually deaf, and it would be inappropriate to say so.
One of the best example of this idea of self-identity I saw was in a small ASL group where families of deaf and hard of hearing children, as well as a few of us who want to learn ASL for other reasons). Our teacher was totally deaf since birth. I already knew a fair amount of ASL, but I needed practice in conversation. We were going around the table, introducing ourselves, either finger-spelling or writing our names and saying if we were hearing, deaf, or hard of hearing. I noticed that one family introduced their daughter (a teenager) as hard of hearing, but later she introduced herself to the teacher in fluent ASL (which her family did not know) as Deaf.
She is Deaf. It does not matter if she speaks (she does, though you can tell she is deaf), or maybe can hear a little bit with her hearing aids. She is Deaf. And SHE is the one who gets to decide that.
I am disabled. I do not have a diagnosis which makes for automatic acceptance into the Disability Community (that is, I do not have a traumatic spinal cord injury) – and this is true both within the community and outside it. I have to explain to random strangers and even doctors why I use my wheelchair. Yes, I can walk a little, but if I ever want to leave my house, I need to use my wheelchair. And people need to get over that.
If we are ever going to be able to form a cohesive community, which I believe is the only way to change culture to be more accepting of disability and to give ourselves a voice, we need to stop asking if a person is “enough” to be one of us. Only that person can decide if they are disabled. Not as a medical condition, but as an identity.
I fought for a long time, and constantly felt the need to explain that I really do need the chair, I really do have health problems. Not anymore – I use a wheelchair. I am Disabled. Just like the woman I met in Disney – if she is identifies as Deaf, then she is, regardless of any residual hearing abilities.
So, from now on, I will be adopting a new way of writing, borrowed from a convention the Deaf community uses. When one is speaking about deafness as a medical condition, a lowercase “d” is used: deaf. When one is speaking about the community or the identity, an uppercase “D” is used: Deaf. In this blog, I will do the same thing: when talking about medical disability, I will use the lowercase. But it is important to begin to recognize Disability as an identity, and that deserves an uppercase letter.
I am not only disabled, I am Disabled. And only I get to decide whether I am Disabled. If we keep fighting with ourselves, how will we ever accomplish anything in the rest of the world, It is time to stop asking if a person is “disabled enough” or “deaf enough” or whatever.
Others already see those of us with disabilities as lesser – do we really want to do the same thing to ourselves?