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Autism, as any parent who has gone through diagnosis and reached a severe disability can attest, is one long chain of obstructions and missing pieces. It's usually the missing pieces that cause the obstructions. When they don't make eye contact, it becomes hard to decipher what they mean or what they want from a parent. When children don't speak, they can't tell you what they like, who they are or why they did that. We noticed the holes first, and then later we saw the problems as they grew, and we ran off to the doctor hoping to fill those holes. Really, let's be honest. Early days are where we hope that it ain't so. We want them to be able, to be strong and live a full life rich with promise.
But doctors aren't the answer with autism, at least not yet. So, parents listen while professionals tell them in broad strokes what's wrong with their child, what they won't do in all likelihood and how to find resources to help the family cope with the disability. Once parents leave a doctor's office with a dazed look on their faces, they have to choose to make peace or make war with the disorder. They will spend years looking for ways to get to the child inside, some of them with amazing success. Some will work in vain, and never get to the place where they don't have to worry what will become of them, who will take care of them.
Why is autism, why is disability, so devastating? Perhaps, because in our culture we worship ability. We deify captains of industry, Olympic athletes and prize winners. We celebrate success and reward it. Conversely, we may devalue those without. Let's not kid ourselves, we certainly devalue those without ability.
The homeless man standing on the corner of Market Street. The uninsured single mother who didn't finish high school. The unemployed veteran who can't keep it together on the job since that last tour. There are few excuses we accept as a society for a lack of productive ability. Never mind that the single mother works two jobs and still can't make ends meet, and never mind that the homeless man was abused horribly by others in his lifetime. It's not a good reason for not trying now, right? Individuals who overcome, pull themselves up by their bootstraps, are the deserving. So what if they can't? Can't, as in, do not have the ability.
During a school board work session here in Perry Township, I listened as the allocation of special education stimulus funds were discussed. Shockingly, Gwen Freeman, a Perry school board member and candidate on the Take Back Perry Schools ticket, expressed her concerns that money in the general fund should not be used for the new REACH program aimed at the higher functioning, emotionally disabled of Perry Township. She wanted to be sure that "children who do work hard and do succeed have access to the funds they need". As a mother, it's a statement that struck fear into my heart with its implications. Children with emotional disability "choose" their behaviors, therefore it's their responsibility to meet the benchmarks. She didn't seem to get that it's our responsibility to get them there at all. Though she had the grace to look embarrassed by her remarks (when they were explained to her), it stuck with me, even though I'd encountered discrimanatory remarks about the disabled before that night. It worries me to this day that there are those like Mrs. Freeman in positions of authority over my child's education and its funding.
Persons in power reflect the values of a society, even a corrupt one sometimes. So as Americans run through the debate over health insurance and whether it's a right or privilege, and run around on TV calling everything and everyone retarded, I wonder sadly if we aren't showing clearly that we value ability. You deserve to be respected based on level of ability. Individual health is wrapped up in the ability to pay for it. Are these the values of our society? And what happens to my son in such a society?
It's a worrisome train of thought, but the questions need to be asked. To truly effect social change, it seems likely that first we need to address social attitudes.