Rethinking Cost to Society

In her book Claiming Disability: Knowledge and Identity, Simi Linton discusses the ways that disabled people are viewed according to social variables, adapted from a model first developed in 1948* which predates the formal social model of disability or disability studies. This model classifies attitudes toward disability along a continuum from aggressive ostracization toward full integration: pariah, economic and social liability, tolerant utilization, limited participation, laissez-faire, and participation and accommodation. It's that second one, economic and social liability, that is in focus here.

At the top of many, many articles online about autism, is some statistic about the cost to society of autistic people. This may be a financial cost, or a social cost, or an emotional cost, or some combination of "costs". Often it is "cost" in terms of numbers: that 1 in 150 statistic is hammered again, and again, and again, as is money figures like $3.2 million, $35 billion.

From Linton,

Even if disabled people are not considered pariahs, those who are thought to bring harm directly to individuals or to the group, there are situations or cultures where disabled people are unwelcome because they are thought to drain resources or deflect attention from other needs...Responses to these imperatives range from containment and control to abandonment and annihilation, all enacted ostensibly to conserve resources and protect the interests of the majority.

...America's glorification of independence has not served disabled people well. Individual worth came to be increasingly judged in terms of financial and social independence, a goal very, very few disabled people, nonwhites, and women could reach [historically].

...The idea that disabled people are, in an absolute sense, an economic and social liability is rarely challenged. The belief that disabled people impede progress or increase the vulnerability of a society, particularly when it is under siege, has never been tested, and certainly has never been tested in a society that works to maximize the productivity and participation of disabled people.

While on some levels, the U.S. has been moving toward participation and accommodation, that disability and autism in particular is still unquestioningly viewed through the lens of liability and cost to society, nearly at the other end of the scale, is concerning. Especially when conflicting paradigms are represented in the same article, such as both talking about the dollar cost of autistic people to society while also discussing employment solutions that clearly accommodate full, self-determined, participation. Indeed, the cost to society is often used as the reason why people should be given participation and accommodation--I have done this in posts before (e.g. "this solution to accommodate is cheaper than...")!

Back to Linton,

In the current climate in the United States of managed health care, there is a deep fear among disabled people that our lives will be weighed on an economic scale. In Michael Berube's (1996) book about his family's experience of having a child born with Down syndrome, he speaks poignantly of that fear:

Among the many things I fear coming to pass in my children's lifetime, I fear this above all: that children like James will eventually be seen as "luxuries" employers and insurance companies can not afford. I do not want to see a world in which human life is judged by the kind of cost-benefit analysis that weeds out those least likely to attain self-sufficiency and to provide adequate "returns" on social investments.

In order to have accommodation and participation, it may be necessary to rethink what place these cost to society statistics have in the discussion. The paradigm shift required to see autistic people as having value as people rather than only in terms of what they can "contribute to society" hasn't happened yet, and the way social programs have evolved in the U.S. (from this cost foundation) isn't helping.

*Hanks, J.R. & Hanks, L.M. (1948). The physically handicapped in certain non-occidental societies. Journal of Social Issues, 4, 11-20.