Disability rights activists argue that differences are not disabilities. The dominant society determines what constitutes a disability and what does not. Autism is a disability. Cerebral palsy is a disability. Left-handedness is (no longer) a disability. An IQ of 90 is not a disability; an IQ of 89 is. Why, disability rights advocates ask, is a person who has "always been bad at math" not disabled, but a person who has "always been bad at social interactions" is? I think the question bears much exploration, but I do not think we will soon, or maybe ever, reach the point at which society says, "Ah, yes. 'Disability' is merely a construct of otherness. We should eliminate it from the lexicon." Perhaps our definition of disability will change, either by expanding or contracting. Perhaps we will develop more thoughtful accommodations (like left-handed scissors) that allow people with traditionally-defined disabilities to exercise their strengths rather than constantly working to overcome their deficits. Perhaps we will continue to look as some disabilities and fail to find an upside. I don't know.
Wondering about our future perspective, and maybe wanting to help shape it, is what drives this blog. How do we talk about disability? How do we think about it in our experience of parenting? What happens when our feeling doesn't match the mature perspective we think we should have? And finally, what would that mature perspective look like? As parents we have to make decisions in the present. Decisions such as school placement, therapeutic interventions, expectations for our child. How hard do we try to "fix" our children and at what cost, to us and to them? That is to say, in the crush of driving to therapists, fighting for a less-restrictive school environment, and insisting that our children expand their comfort zones, how much of the joy of parenting do we lose to frustration and exhaustion? Perhaps more importantly, what message are we sending to our children about their own inadequacy? On the other hand, how do we distinguish between accepting them for who they are and confidently believing they are capable of growth, just like our other children?
My answers to these questions change on a regular basis. I hope that this blog will serve as an invitation to dialogue among the many parents asking the same questions.
Everybody knows Reinhold Niebuhr's Serenity Prayer (even if, like me, you had to check Wikipedia for the author):
God, grant me the Serenity to accept the things I cannot change,
Courage to change the things I can, and
Wisdom to know the difference.
I would add: And the Humility to ask if I should change everything I can.