Whose disability is it, anyway?

Last year, my typically developing seven-year-old daughter had about a 1-minute homework attention span and over 30 minutes of homework daily. You do the math.

I tried everything — pleading, yelling, coaxing, creating a consistent routine, using positive behavior reinforcements and a visual timer — to no avail. Staying focused without having someone physically present to re-direct her attention to the work was simply above her ability. The year started and ended with a lot of teeth gnashing from both of us. The question of ADD hung in the air.

This year’s homework now lasts 10 minutes or less. Problem solved, more or less. No more anger and frustration. ADD is still a question mark, but our lives are more peaceful.

I also have a son who has a number of medical, developmental and behavioral special needs, much more complex than, but including, difficulty paying attention. Though it’s not a perfect analogy, it’s hard not to wonder if something similar could happen to him if the world was different.

The more time I spend “fixing” my son’s various medical etiologies, behaviors, and inabilities so that he can productively participate in society, the more I wonder: Are his disabilities themselves really a problem, or is it society who has a disability?

If his school cannot provide an adequate and appropriate education for him — is that his disability or theirs?

If our town’s recreation department cannot come up with a single activity that he could do with other typically developing peers — is that his disability or theirs?

If my community cannot see his value and seek out ways to include him in their restaurants, plays, activities and events — is that his disability or theirs?

If it does not occur to local business owners that they could one day hire him — is that his disability or theirs?

If my country cannot see the justice in creating a safe and welcoming society for him (and everyone like him) that gives him the supports he needs until all of these disabilities are overcome — is that his disability or theirs?

I’m not proposing that we lower the bar for him. But what if we could raise it just a little for everybody else?

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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in special needs parenting and tagged , , , , . Bookmark the permalink.

7 Responses to Whose disability is it, anyway?

  1. SO WELL SAID! Keep saying it…and I’ll do the same…

  2. Ray Johnson says:

    Bravo!

  3. Carolyn says:

    You are so right. It was hopeful for me to review the new World Report on Disability and discover that the writers had adopted the WHO International Classification of Functioning, Disability and Health (ICF) as their conceptual framework. This way of thinking about disability is very similar to the definition given in the UN Convention on the Rights of Persons with Disabilities: “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.” Tom Reynolds talks about what we can do to help the person with the disability flourish in their own way rather than rather than concentrating on helping (?) them adapt to an unfriendly world.
    Carolyn

    • You’re not going to believe this, but I actually started the draft of this post with a link to the WHO ICF report! That report was so helpful for me in shifting my attitude from “fixing” to “flourishing.” It just didn’t make it into the final draft. But for you die-hards: http://www.who.int/classifications/icf/training/icfbeginnersguide.pdf

      I also learned recently from a former president of AAIDD (American Association for Intellectual and Developmental Disability) that part of the reason for the shift from the term “mental retardation” to I/DD was not just for sensitivity reasons, but to more accurately shift away from language that signifies a ‘defect’ to one that has more to do with functioning and reflects the possibility for progress to be made.

      Perspective is everything!

  4. GREAT Post! – and yes, perspective is everything! I have just back-linked this page to an earlier post on my ADD-focused WordPress Blog, to an article entitled Tales from the ADD Dark Side.

    While I *especially* love your last sentence, I believe there is more to be explored here in order to have A WORLD THAT WORKS FOR EVERYONE.

    As you might expect from the article on my site, I think that “lower the bar” is an unfortunate linguistic coinage that unconsciously opens the door to objections to accommodations by overlooking the VERY important point you are making in your post: EQUAL ACCESSIBILITY.

    If all are to be held to the SAME standards ultimately, then society must hold the SAME standards for access to the same training and development for all. Otherwise it is society that is handicapping unfairly, actually “RAISING the bar” for some, to use that metaphor, while setting things up to be easier for the rest. (We call that “discrimination.”)

    If we are going to penalize students for being late to class, for example, it might be considered “an unfair advantage” to EXCUSE the ones who use the wheelchair ramp *unless* that entry is at the back of the building, making it impossible for the wheelchair-bound student to make it on-time without leaving the prior class ten minutes EARLY. Until we succeed in getting that darn ramp moved, to be FAIR, we can *either* bar the front doors to ALL students, or change the “late” time for those who can’t use the front door.

    HEADS UP, AMERICA: How is anything stemming from that concept that “lowering the bar?”

    Madelyn Griffith-Haynie, SCAC, MCC – (blogging at ADDandSoMuchMore and on ADDerWorld – dot com!) “It takes a village to educate a world!”

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