A Chorus for Change

 

This essay talks about the variety of dischordant voices clamoring for attention, in the world of disability advocacy, and how we are more likely to effectuate change, if we sing together.

Thanks for coming by to read!

Autism blogs abound.

I had no idea how many there were, until I used “autism” as a search term in the Search section of my WordPress app.  Many, many, many blogs.

The authors range the gamut:

• those who have grown up with the diagnosis
• those diagnosed late in life
• moms and dads whose children have been newly diagnosed
• veterans of the systems we use, to usher those with autism through life
• professionals and researchers
• homeschoolers of kids with autism

The point of view and purpose of these blogs vary widely, as well.  Some are anecdotal, some research-based.  Some are inspiring, some full of despair or resignation.  Some philosophize, some analyze, and some teach.  Others are simply chronological, depicting the passage of time.

The blogs are as varied as the spectrum itself.  And that is only counting those on WordPress.

Why is it important that we have so many voices?  Isn’t it all just noise?

Conspiracy of Silence

To evaluate the present, we must know the past.  Today, people teem with opinions on the subject of disability.  But what I remember from my own childhood is silence.

I do not recall a single student with a disability, in my elementary or junior high classrooms.  In high school, it was the same.  I was aware of a man with Downs syndrome that frequented a local park of my childhood, and another, who biked around a park I used to walk through, when I was a young mother.  I am ashamed to say, I never interacted with either of them, from a mixture of ignorance and embarrassment and fear.

Now I know

• That laws requiring children to be educated in the public schools, despite their disabilities, were not fully implemented, till after my childhood.
• That before that became the law, public schools often just refused to admit these children.
• That very often, these children were institutionalized, on doctor’s orders, with little consideration given, for family bonds, or the child’s emotional needs.
• That often, the very existence of these institutionalized children was kept secret.

Raising a Voice

Years later, in one of my law school classes, an older man sat in a wheelchair in the front row.  Now that I think about it, he could hardly do otherwise.  There was no way for him to sit in the higher tiers of the auditorium, since architectural accommodations, which we now take for granted, were not yet required by law.  Even in a law school.

I was a shy, far from confident woman in her twenties, with no life experience beyond school.  I would much rather have faded into the woodwork, than be called on, in front of that class of 200.  I sat high in the ozone rows, hoping the professor’s glasses prescription would not allow him, to recognize objects so far away, as life forms.

Compared to me, this disabled man talked quite a lot. Voluntarily.

Several times, he mentioned the Americans with Disabilities Act (ADA), which had yet to be passed by Congress and signed into law. And my ignorant brain nodded and thought, well, of course.  He would be interested in that.

Joining the Chorus

When I found out my own child had a disability, I felt sick to my stomach.  I was deeply afraid.  I was terrified for him, since the first inkling we had, of his condition, came in the form of violent seizures.  That, alone, was disorienting and alarming.  A loss of control, an earthquake of the soul.

I was also terrified for me.  Could I handle this?  What would it do to my otherwise calm, idyllic life?  Would I still be a good mom to my other kids, a good wife to my husband, a good daughter to my parents, a good friend to my friends?  Or would this one condition overwhelm and envelope my life? Would I ever dare to have another child?

That reaction was, no doubt, at least in part, born of my unfamiliarity with disability.  Other than the obvious casualties of war, and infirmities of old age, all human bodies and minds, I assumed, were essentially the same.  In fact, I had very little hands-on experience with differences, of any kind.

Why lay bare my prejudice, which will only subject me to ridicule, in this more tolerant, accepting age?  Because this conspiracy of silence, a conspiracy I was party to, kept progress from being made by, and on behalf of, people with disabilities.  It wasn’t until people, like the man in my law school class, spoke up, and did something about it, that things actually changed.

And there is much left to change.

A Difference without a Difference

So back to the voices. The many autism blogs, the many points to be made, the many points of view.  Noise, or Music?

They say every child with autism, has autism in a different way.  If you have met one child with autism, you have met one child with autism.

We like to think ,sometimes, that we are alone, in being peculiar.  Other groups with disabilities may be different, but we are the different-est.  Requiring more.  Deserving of more sympathy.  Qualitatively, more impaired.

But the same can be said of all those with disabilities.  They just don’t have such good PR.  The experience of disability is what binds us together, in common cause.  Not the diagnosis.

Working Toward Obsolescence

I remember going to an inspirational talk, while my son was still in preschool.  The point of the talk was to rally the parents of children with disabilities to action.  But not just to individual action. To joint action. The louder the voice, the more likely it was to be heard.

There are many children and adults with autism.  We make for a resounding chorus, when we speak in unison.  But there are so many more voices out there.  Experiencing a multitude of disabilities, along all walks of life.

We need to advocate for them all.  Not for one group over another, hoarding the funding, the research, the services.  Not splintered, like a rainbow, into bands of light, insisting we are nothing like one another.  We should be joined, instead, in a single purpose, in a single all-powerful stream of bright, white light, so strong it cannot be looked down upon, nor ignored.

Let us be advocateurs.  Provoking progress through advocacy.  Each voice pushing the message so that the whole can fare better.  Not just sopranos, nor altos, nor tenors, nor bass.  A chorus.  All means all, after all.

Good luck to each of you in your blogs.  And let us hope that twenty years from now, our children will look back to this moment, and it will seem to them, just as backwards and obsolete, as my own, not so distant past, seems to me.

Because we, too, will have made so much progress.

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Update:  if you want more information on the history of disability rights in the US, try this article by one of the authors of the Americans with Disabilities Act.

For another essay on the delights of homeschooling and parenting children with disabilities read Asking for Help.