More and more I hear about children who have diagnosed conditions such as Autism, Attention Deficit Hyperactivity Disorder, or learning disabilities who have been placed in the educational system without the diagnosis being known to teachers or administration. Parents feel that assumptions made about the label will harm their child far more than keeping the condition unknown. Bet you figured out that I find this approach to be problematic.
My label of blind is obvious to most upon meeting me and is no more escapable than others noting my gender. The assumptions people make about my visual status are often frustrating, insulting, or downright harmful. Still, even if it were possible, I would not have my visual status unknown to those who meet me. In fact, those times when my label eludes another’s awareness often involve the most basic of problems, like being able to get my attention.
The word blind means that I am not able to perceive my surroundings with my eyes – a statement of fact. From this truth people attach significance and deduce implications beyond the literal. “If she can’t see, then she can’t use a computer.” Not being able to see is a mere nuisance, whereas other’s conclusions plague me endlessly. Rather than avoiding the descriptive label, I focus on stripping away the limitations people associate with it. Given that it’s impossible for me to evade my blindness being known, my stance is not exactly all that principled.
Other labels that describe me, such as chronically ill, are not discernible by visual assessment. To be honest, I do not always bring them up upon first meeting another. While it would be awkward – “Hi, I’m Jen and I have Chronic Fatigue Syndrome” – that is not my primary reason for keeping the condition to myself. Rather, I hate the hassle that often results from people knowing of my health situation. “Wow, you don’t look sick” or “I get tired, too” are just some of the possible responses I field. When it matters, such as with medical professionals or those who are relying upon me, I make my condition known because I find it inconceivable that I would deny others necessary information.
Moreover, I find it philosophically wrong to avoid a pragmatic descriptive label because others attach meaning to it. If I truly believe blindness is not a negative or positive state but simply a fact, then I need to live accordingly. Hiding my labels implies there is something about them requiring concealment – something bad. I cannot and will not substantiate others’ negative perceptions of my labels.
In my non-parent opinion, I believe divorcing a child from their condition does the child a disservice. Yes, teachers will have some wrong-headed beliefs, but they may also have a better idea of how to teach the child. Rather than avoiding a statement of fact, parents have an opportunity to debunk assumptions by insisting their child not be pigeonholed by preconceived notions. And, when another student comes along with the same condition, that teacher will be better able to handle it with an open mind.
I also wonder what it teaches a child when their condition is concealed. One possible message is that when others react badly to a presented fact, the proper course of action is to hide the fact. Another possible lesson is that the label is something shameful. Even if a parent can avoid conveying both those ideas, the child could still learn that they should not openly address their diagnosis. How could any of these be in the long term best interests of a child?
I realize making labels known and then dealing with the consequences is difficult, but so too is keeping labels hidden. What must you do to keep a condition hidden, especially if teachers are actively suggesting the possibility? Also, while benefits of concealment are limited to an individual, debunking misconceptions helps others. I want the world experienced by future blind, chronically ill, facially different children to be better than the one I now inhabit, so I cope with the detrimental aspects whenever possible. It does make my life harder, but it also means I’m living what I believe rather than allowing others to shape my actions.