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.
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5 comments:
This is a great one. While my severe and lifelong depression is usually under control and not noticeable to those around me, I find that once someone knows that I fall under that "label" all of a sudden, if I am not smiling I am depressed (thus needing to be doted over or avoided). Personally, I feel that people take on the responsibility of constantly being concerned about whatever makes us not fall into the "norm" - however, if they asked me, I would prefer that someone be concerned and solve how to get my hair to lay down during the Santa Anas and assume that if I need help with my depression that I will ask.
I never really thought about where I'd rather all that "concern" be focused. Definitely enjoying the thought exercise.
I think it all boils down to sympathy versus empathy. If people were truly "feeling with me," then they would not be concerned about what does not concern me. Unfortunately sympathy is a far easier and less time/energy consuming emotional process, though.
As a parent, I chose not to inform my child's school of his ADHD diagnosis. Not (I don't think) because I was ashamed - I told my child about it, and didn't tell him not to tell his teachers - but because I did worry that the school system's "treatment" (not assumptions about) for (of) ADHD boys would be worse than how he would be treated if not labeled.
From my point of view, I didn't divorce my child from his condition, but didn't think that publicizing it to his teachers would do him a service, just as you have found that assumptions about your visual abilities or disabilities don't do you a service.
You may be right that one or more of his teachers might have been able to teach him better had they been aware of his diagnosis, but I wasn't that optimistic at the time, and after putting three children through the public schools of two states, I don't think I did the wrong thing.
Kapja,
Mine is only the opinion of a person without kids. You need to do whatever you think is right for your child. I doubt I'll change anybody's mind, but it's possible a parent might go about implimenting their decision in a slightly different way.
Yes, people knowing I'm blind is sometimes more trouble than it is worth. I would NOT change it, though. I am clear in my own mind that other's behaviors are not reasons to conceal facts about myself. For me it is all about what I believe and the change I hope to cause in the world around me. I pick the principles over the pragmatic.
You are talking about your kid and I suspect pragmatism must come first. You get to decide for your kid. I get to respect it as your choice. I was only trying to offer food for thought. Hopefully I didn't instead serve up judgment in abundance.
Jen - thanks for your response. I didn't and don't feel judged, and I found your comments interesting.
Like everything, there's multiple sides to labels. There's awareness, and then there's prejudice.
Thanks for providing food for thought.
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