Preferences of some disability advocates shouldn't restrict options for all.
Posted Jan 18, 2020 | Reviewed by Devon Frye
Last week, in a New York Times article about Elizabeth Warren’s proposed disability policy, an Ohio mother of a mainstreamed fifth-grader with Down syndrome implied that her son’s school should get rid of its specialized classrooms for children with disabilities: “Just because that segregated room exists, it’s a constant threat for him,” she said.
I’ll have more to say about mainstreaming in a later post, but for now, I just want to focus on this logic, which I’ve encountered time and again during my 15-plus years of advocacy: I don’t want X, so no one should have X.
I initially ran into this while researching my first book, which was about the electroconvulsive therapy (ECT) that finally stopped my son Jonah’s violent rages. These posed such a danger to himself and others that he was hospitalized for almost a year when he was only 9 years old.
There are over 15,000 citations on PubMed documenting the safety and efficacy of ECT for certain psychiatric and motor disorders; an estimated 100,000 Americans get ECT every year; and the treatment has been transformative for Jonah and for dozens of other young people with intellectual and developmental disorders and aggressive and/or self-injurious behaviors. Yet there still remains a very small, vocal minority lobbying for ECT to be banned—either because they suffered side effects from it, or perhaps it didn’t work for them or for a loved one, or even because, although they’ve never had it, it just sounds scary.
ECT is a significant intervention used on desperately ill patients who have not responded to less-invasive therapies. It can have side effects (the most common are headache and nausea, but short-term memory loss around the acute course of treatment is not uncommon), and it doesn’t work for everybody (although studies show it works for most people—about 80 percent of catatonic or depressed patients). In this way, it is similar to other major medical procedures, like chemotherapy or bypass surgery. But can you imagine anyone making the argument that either of these procedures should be banned because they caused side effects or failed to save the life of a family member?
Once Jonah stabilized, and my advocacy shifted to services for the severely autistic, I realized this logic defined many of the debates I found myself in. Mildly affected self-advocates, who would never need the intensive supports provided by larger residential settings, sheltered workshops, and disability-specific day programs, fought to close them. It wasn’t enough to offer more options, like supported employment and individual apartments. Even as these “integrated” models became the default mode of service delivery, advocates pressured (and keep pressuring) states to close alternative settings they deem “isolating” and “segregating”—despite vociferous protests from intellectually and developmentally disabled clients and their families.
In this country, there needs to be virtually incontrovertible evidence that something is harmful before it is banned—and often, that isn’t even enough, as in the case of cigarettes, for example. ECT, in contrast, has a strong evidence base reflecting decades of research from hospitals around the world.
As for service models, although self-advocates claim that research favors smaller, inclusive settings, the few studies that have been done are so poorly designed—typically not controlling for challenging behavior, for example—that David Mandell, Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, summarized (in an editorial I’ve quoted so many times that many of you can probably recite this with me), “Our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”
Historically, disability advocates (many of whom were parents, going back to the mid-20th-century founding of groups focused on cerebral palsy, muscular dystrophy, and intellectual disability) have fought for expanded options, because the one-size-fits-all model of institutionalization was neither preferred nor appropriate for many disabled individuals. In fact, the Supreme Court Olmstead decision—mysteriously yet consistently cited as an “inclusion mandate” by many advocates—is actually an expansion mandate, affirming the right to live in community-based settings, but explicitly preserving institutional levels of care.
Justice Anthony Kennedy warned, in a concurring opinion I also keep finding myself referencing, that “it would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”
Today, the dominant voices in the Disability Rights fight instead to constrict options, based on nothing more compelling than ideological incompatibility. What too often goes unarticulated is that this insistence on a new, one-size-fits-all model of inclusion or bust is just as paternalistic as the push for institutionalization it replaced.
After fighting this fight for more than a decade (and often losing), I still don’t understand what is so hard or complicated about acknowledging that the vast diversity of impairment, need, and preference in the disability community mandates an equally broad menu of service provision. We could respect the “individualized” part of the “individualized support plan” that is allegedly at the heart of service delivery for the disabled, and together demand the range of options necessary for meaningful choice. But we’re not, not yet.
I really hope that the fifth-grader with Down syndrome continues to thrive in mainstreamed classrooms. But I also hope those specialized environments are always there, just in case one day he, like so many other children, finds he needs them.