Disability and Independence

[This post is one of an occasional number contributed by my good friend, who is the mother of a child with special needs.]

by Rose Woodhouse

In the 1840s, first in France and then the United States, a doctor named Edouard Seguin managed what had previously been thought impossible. He managed to drastically improve the lot of those who were then known as idiots (i.e., those with the most severe mental retardation, as opposed to imbeciles and morons, who were less affected). Idiots were widely understood to be absolutely ineducable.  Yet under his tutelage, many learned how to walk and talk, gained basic social skills, learned how to participate in self-care. Some were able to gain enough skills to hold down a basic job. For example, inmates had the primary responsibility for the physical maintenance of the asylums he ran. The scientific community at the time would have been blown away were his results even half as drastic as they proved to be.

His core insight was to see mental retardation as primarily a cognitive dysfunction, rather than a brain malformation. Rather than shrugging off idiots as those whose brains were formed incorrectly (and thus were hopeless), he saw mental retardation as a problem of “will” – or what we might call today “executive function.” If mental retardation is a cognitive problem, rather than a purely anatomical one, then certain cognitive inputs may be able to help. In his book, “The Moral Treatment, Hygiene, and Education of Idiots,” Seguin laid out his program. It is striking in its modernity. Like any course of physical, occupational, and speech therapy for the severely disabled today, Seguin recommended a gradually increasing course of sensory and cognitive stimulation — beginning with massage,  exposure to a variety of tactile experiences, swinging, encouragement of the imitation of basic phonemes, gym equipment that emphasized correct muscle movement, eventually working at an individual pace toward more and more sophisticated achievements. Maria Montessori lifted large swaths of his book in developing her own education system.

So if what we know now about the treatment of the disabled was actually known in the 1840s, why were there so many dark years until the 1990s? Why were the severely disabled still known as “ineducable” until the 1970s? Why were so many thousands of people thrown into institutions and merely kept, rather than taught?

As the first large groups of Seguin’s students aged out of his schools (he was rather wrong about one thing; he thought home-rearing was unworkable and unbeneficial), ready for basic work, a recession was on. Who would hire idiots, even if surprisingly high-functioning, when there were plenty of people without disabilities who needed work?  While no one disputed Seguin’s results, his work faced a more fundamental question – if true independence and normal functioning would always elude his students, why do this work at all? To what end do we teach the disabled? Without a goal of independence and productivity, people did not see the point in carrying on his laborious treatment. The dark age of asylums began.

Today, as the kids who benefited from the recent revolution in home-rearing and abundant therapies and education begin to graduate high school, and begin to look for jobs in a crappy economy, some of the same questions are facing us. In the case of the highest functioning, the answer is clear. Many who would not have been able to live independently without therapies can do so. Many can marry, become parents. But what about lower-functioning kids? The New York TImes has a wonderful moving story of a boy with autism graduating from the school system and trying to get work. Higher functioning than Seguin’s students, and possessing a marketable skill, he still faces huge hurdles to getting a job.

Many see independence as the goal for everyone. In discussing sheltered workshops, the article describes the different views.

Some family members see such government-subsidized facilities as safe, productive alternatives to keeping disabled adults idle at home.  Others criticize them as a form of segregation, where people cannot reach their potential.

If the goal is independence and productivity for everyone, it will not be achieved. Especially in a terrible economy. And then we run the risk of society asking, as they did in Seguin’s time, to what end are we educating our severely disabled?

If our end in educating the disabled is to encourage dignity and quality of life improvements for the disabled and their families, rather than focusing on independence, justification for therapies and education becomes much more defensible. For some dignity and quality of life will mean independence. But there are those who will not get there, whose potential does not include the wider working world. Their education should not be foregone, as it was for so many decades, because of an impractical focus on having a real job.

Russell Saunders

Russell Saunders is the ridiculously flimsy pseudonym of a pediatrician in New England. He has a husband, three sons, daughter, cat and dog, though not in that order. He enjoys reading, running and cooking. He can be contacted at blindeddoc using his Gmail account. Twitter types can follow him @russellsaunder1.

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