Mary Dell (marydell) wrote,

Why I say "disabled."

When talking about kids with minor physical disabilities, a lot of able-bodied people--teachers, parents, even doctors--will say they don't consider these kids to be disabled, because they can do basically whatever a not-disabled kid can do.  I'm always uncomfortable with this assertion, because I think it's based on an unspoken assumption that "disabled" means "OMG totally fucked."

According to the World Health Organization

"Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions.
  • An impairment is a problem in body function or structure
  • An activity limitation is a difficulty encountered by an individual in executing a task or action
  • A participation restriction is a problem experienced by an individual in involvement in life situation

Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives."

As someone with an upper body limb-reduction defect, Charlie inarguably has an imparment.  When it comes to activity limitation, the effect of the impairment is very minor; he has to adapt and develop his own way of getting things done, but for the most part he doesn't need help and when he's an adult I don't expect he'll need any help at all.  He will encounter some participation restrictions when it comes to certain sports, artistic pursuits, and musical pursuits, which will either be no big deal or will be a significant factor in his life, depending on his desires and aptitudes.  If he loves piano and wants to play at a very high level, he will be screwed, but if he loves trumpet instead, he'll be fine. Obviously we intend to direct him into activities that will allow him to participate fully instead of having to deal with impossibilities or near-impossibilities.

So he's not particularly limited, but he is disabled. We absolutely think of him  as disabled; we teach him to think of himself as disabled.  Because there's nothing wrong with being disabled.  And because there's a vast community of fellow travelers out there that I want him to get to enjoy and learn from and join with in activism.  If he decides, as he grows up, that he doesn't think of himself that way, I'll respect that, because it's his identity and he ultimately has to be the one to craft it. But I hope it will be just no big deal to him, that he'll be "disabled" the same way he'll be "a White Sox fan"--something he takes for granted and likes about himself.

Tags: charlie, disability, parenting philosophy
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