Disability 101: Nothing about us without us
May 17, 2009
It has become a political slogan and the motto of the international disability rights movement: Nothing about us without us.James Charlton is the author of the book “Nothing About Us Without Us: Disability Oppression and Empowerment” in which he argues that it is the paternalism of our systems and social structures that creates the oppression of people with disabilities. Paternalism is the attitude that those who are better off (more powerful) should make the decisions needed in order to “take care of” people who are not so well off. The less well off, of course, are not included in the decision making process and are not given the opportunity to improve their situation. Those “less fortunate” forever remain in the position of being “less fortunate”.Charlton, a wheelchair user, reminds us that historically this attitude of paternalism was given as justification for the slavery and segregation of African Americans. People of color were historically seen as not able to take care of themselves and in need of guidance and charity from their white superiors.We have now rejected that paternalistic attitude in terms of race. Charlton questions why we still embrace this attitude when it comes to people with disabilities. He points out that people with disabilities are currently still subjected to the same paternalistic oppression that African Americans were previously enslaved by. Most of our service organizations, charities, and medical establishments are based on the premise that people with disabilities are unable to care for themselves and need the guidance and charity of their able-bodied superiors.I have, on many occasions, personally experienced this phenomenon which Charlton describes. So many times I have approached organizations which provide services to people with disabilities and I, rolling in with my wheelchair, am treated like a child and told what I should be doing. Not all organizations are this way. But many are.Also, I see over and over again, situations in which service providers make decisions for people with disabilities with the thought that “Oh, this person really doesn’t understand this situation so I’ll help them out with it.” Actually, most times people with disabilities do understand the situation. They just have a different opinion and different priorities than the service provider.The danger is that we create a self-fulfilling prophecy. Those of us with disabilities are told we can’t take care of ourselves so frequently that we begin to believe it. Then we are forced into a situation of begging. We must beg for services. Through incredibly lengthy and degrading application processes, we learn to beg.Paternalism creates dependency which allows paternalism to continue. Dependence creates poverty, isolation, indignity, powerlessness, and marginalization which all, again, allow paternalism to continue.Charlton insists that just as we have rejected paternalism in race relations, it is time to reject it in regards to disability. Independence, integration, empowerment, self-help and self-determination are the answer.Nothing about us without us.It is time for people with disabilities to be in charge of the service organizations, charities and medical establishments that provide services and assistance to people with disabilities. It is truly people with disabilities who understand best what people with disabilities need.Some advocacy organizations are beginning to be staffed and headed by people with disabilities. Others aren’t. We need more. I would go so far as to say that every organization that provides services for people with disabilities should have at least some staff members with disabilities.The danger of the paternalistic system is that we create attitudes of dependence and even entitlement in people with disabilities. More about that in my next column.