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Wednesday, April 30, 2014

My Daughter, Profoundly Disabled, Needs a School for Children Like Her

From The New York Times Blog "Motherlode"

By Margaret Storey
April 17, 2014
The author’s daughter at
work on an art project.

A Civil War historian, I never thought I’d use the word “segregationist” to describe myself, but my daughter’s public school has changed all that.

I’m not talking about racial segregation — her school is one of the most economically and ethnically diverse in our town. I’m talking about self-contained education for children with disabilities, which, in the United States, is increasingly rare.

My daughter is 10 years old, but as dependent on others as a 12-month-old. She cannot speak, but communicates volumes with her eyes, vocalizations and gestures. It can take a while to “get” her, but once you do, you’ll never forget how deep she is, nor how much she understands.

My daughter’s school challenges the idea that children with disabilities are best served by being educated alongside non-disabled peers. But the idea that inclusion is best, I would argue, is in danger of hardening into a dogma that risks re-stigmatizing children with severe or profound disabilities.

In our (supposedly) post-racial, post-gender, post-abled moment, my position will certainly be perceived by some as immoral and wrong. Single-sex schools, “sheltered workshops,” and even historically black colleges and universities have all come under criticism for fostering low expectations and consigning people to subpar opportunities.

I understand and agree with many of these concerns. I support the inclusion movement, deeply grateful for the civil rights pioneers who made it possible for my daughter to have a right to public education at all. I recognize that these efforts have been hugely successful for the vast majority of children.

But these practices still leave certain kids out. One mother of a son with severe autism explained that he had done well in a mainstream school while young, but his situation changed as he aged. Things worsened, ending with the child wearing a “helmet with a face guard,” “staff hovering over him every minute” . . . “more or less confined to one room for the whole day.” This was no longer inclusive, but exclusive and stigmatizing.

The alternative of a special school is hard for some parents and educators to embrace. As one mother reflects, “Sending a child to a separate school can feel like a surrender, as if you’re giving up on keeping a child in the community.” I see this stigmatization all around me — most recently, in the mother who had to fight to have her nonverbal, significantly cognitively delayed child placed in a specialized school over the determined resistance of district authorities.

But there is an alternative: destigmatize these children and the special schools they need.

My daughter loves to learn, but to do it, she requires specialists trained to teach a child whose memory and cognition are affected by multiple daily seizures and loads of dulling medications. She needs a setting where the student-to-teacher ratio is low, the expertise of the staff very high, and one that has the resources necessary to pay for that intensive support available. There is no shame in this.

At her school, there are no places she cannot go, no places where she doesn’t belong. She rolls through the front door into classrooms where she is educated, not babysat. She knows older kids with a range of accomplishments and has friends who call out her name when she arrives in the morning. Alongside her peers with disabilities, she’s thriving in a rich, complete school community.

People who advocate inclusion for all might argue that my husband and I suffer from a form of false consciousness; that we don’t see the potential benefits, or “normalization” that could occur in general education. Or they might contend that separate schooling obstructs efforts to foster tolerance of disability in typical children.

Maybe. But if they met our child, I suspect they would retreat pretty quickly. They might begin to appreciate how abstractions about inclusion may fail to comprehend my daughter’s needs. They might see there is a profound, dignified freedom in not being the object lesson for a society that is still, all these years later, teaching kids how to tolerate difference. They might understand that, at a neighborhood school, she would be relegated to a “severe/profound” classroom, terribly isolated by those who claimed to have her best interests at heart.

We still need self-contained special education schools, and we need them to be rigorous and well-funded. Only when we honestly admit that we need these schools can we get down to the hard work of educating kids with disabilities, no matter what the setting. We cannot truly celebrate the diversity of people with disabilities if we fail to acknowledge the diversity among people with disabilities, and rise to meet the varied needs of all.


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Margaret Storey is a Public Voices Fellow with The OpEd Project, Associate Professor of History at DePaul University, and a parent advocate for children with disabilities and medical complexity.

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