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Opinion: Is it a right or a responsibility?

Opinion: Is it a right or a responsibility?

Marking 25 years of the ADA

by Dan Lukens

My 52 year old brother came into this world as a member of a different class of people. Shortly after his birth, my parents were told that he belonged in an institution. He went to school with no right to an education and when he went into public places with his family, people would ask why we would let him out.

In spite of all this, my brother still managed to live a productive life in our community. He benefited (as did his family) by the advancement of his rights as a citizen but mostly his life was made better by a state community that was there for him with the supports he needed to live that productive life.

The Americans with Disabilities Act (ADA) has brought us a long way in 25 years Nonetheless, people with intellectual and developmental disabilities and their families still face significant challenges- perhaps the most serious challenges in a generation. The right of people to live in the least restrictive setting, a cornerstone of the ADA, is being asserted as never before at the same time that the resources to support people with disabilities are under pressure as never before. Whereas, it was once assumed that New York State’s commitment to this population would become the national standard, it is New York that our federal government is now asserting must conform to the more modest support levels of other states.

As important as it is, the ADA’s “least restrictive setting” conversation at this point is overshadowing what I believe to be a more important narrative. That is, is the constituency of people with intellectual and developmental disabilities more or less empowered? Are their lives more secure and are we, as a society, more or less responsible and accountable for them?

More specifically, is it care and supervision, or a right to full access that should drive our policies? This is a debate that is playing out in sheltered workshop programs across the county. With Iowa’s Henry’s farm scandal as it’s rallying cry, the federal government which, through it’s financial stake in the Medicaid program, is using its power to compelling states to close their sheltered workshops. The assertion being that they are not integrated, do not pay minimum wage and thus do not meet the ADA’s requirements.

On the other side of this argument, are not only many sheltered workshop operators but their participants and families as well. They say they like workshops because they offer productive work to people they believe would otherwise not have employment. For these families, having a safe place to go in the day where their family member can be with friends and is able to work at their own pace in a setting geared to meeting their unique needs, is a value, “sheltered” though it may be.

As a provider what you hope is to be able to offer the service that the individual service recipient prefers, our own view notwithstanding. Nonetheless, community work is “in” and workshops are “out” and in the face of lost funding, community work is where services are heading without regard to the choices of service recipients. Moreover, though the policy direction of the federal government is built on the assertion that everyone person with a disability should work and work in an integrated setting, it would seem they have done few of the obvious things that might facilitate that policy and have mostly focused their attention on attacking the funding.

Overall, the policy approach coming out of Washington I would compared to the first HMO’s (Health Maintenance Organizations). It is a, “save money by denying service,” mentality with little of the foresight that might actually be applied to avoiding dependence and this has had the effect of belying the credibility of their argument. People, I believe, can live better, healthier and more independent lives but that conversation has to start with an abiding commitment to what serves people and not what works for the rhetoric of the next election cycle.

The ADA was written primarily to prevent the discrimination of people with disabilities and to remove barriers to their mainstream participation in society. Though the provision of basic care and supervision is a need of many people with ID/DD and certainly a priority, the aspiration of the law is for participation and thus it is not simply a matter of choice.

Separate is not equal and the segregation of individuals because of their disabilities is what the ADA was written to prevent. People were put in institutions at the time of their inception, in part to remove a perceived unwanted group from society. To its credit, the ADA has successfully erased much of that stigma but a measure of segregation remains mostly as a practical matter.

Government support to people seen as needing assistance has been, and continues to be, categorical (based on a diagnosis) and, of course, it is limited. And so, the financial constraints require that a person either receive an individualized service of relatively short duration or that they be served in a group of like individuals.

The system mostly does not afford an all-day, one-to-one service. Thus the tendency is to segregate people not because they are unwanted but as a matter of economics. And, it is this economic model that the federal government is rejecting. In that sense, putting people together in a peer group without adequate interaction with non-disabled people, is now presumed to violate their rights under the law but having them unsupervised apparently does not.

The ADA has unquestionably advanced the rights and opportunities of people with disabilities. It’s ability to help them live richer or better lives from this point forward, however, I would argue is debatable especially for those individuals whose lives depend on basic care and supervision.

At the heart of our culture is an economic system which, as New York Times columnist David Brooks writes: “.....encourages us to see human beings as self-interested, utility-maximizing creatures.” People are what they produce or so our popular culture would suggest. And, our workshops programs and now the; “everybody works” philosophy, embrace these values often at the expense of the people they serve. Both, in my view, are grounded in the same paternalism and predicated on a like presumption that ID/DD people are lesser versions of ourselves and that a value system that would cast them as such is valid.

Our laws can give us a right to equality but they can’t make us equal. To presume otherwise is the most destructive kind of arrogance. Having a right to go to work does not make you able to earn a living nor should it make you less of a person if you can’t.

The value of a human life, I would assert, is not measured in its utility (or, at least, it shouldn’t be) and it is on this point that our culture so often gets it wrong. Humanity needs it’s citizens with disabilities not to drive its industry or take out its trash, but to be human.

The point is that people with ID/DD, in some regard, are not the ones with the problem, we are. They are just trying to live their lives and reconcile the assistance that they need from others while we vacillate about the role we’d like to cast them in. They are like the Native-American children of past decades whose names we would change and identities erase for the sake of our own need to make them like us.

Rights alone do not value people nor do they merit those things in us that would make us better people. They are, nonetheless, an aspiration which can call us to better things. In a disability parking sign or a ramp on a building entrance is an intent that has changed us and helped to make us a more thoughtful and inclusive society. Inclusion, however, is not a substitute for a commitment. We are either there for the people who need us or we are not. Our assertion of rights under the law notwithstanding.

The opinions expressed are those of the author and do not necessarily reflect the position of Camp Venture, Inc.

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2008 Rockland County Autism Symposium Venture Foundation Address
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