From the Board | Good Intentions

by Ari Ne’eman

People frequently ask what makes ASAN different from other autism organizations – why is it that it is so important that a group exist out there run by and for Autistic adults ourselves, as opposed to family members, professionals, educators or doctors? After all, parents simply want what is best for their children and people usually don’t go into fields like disability service-provision, education or medicine if they don’t want to help people. Don’t we respect their good intentions?

We most certainly do, we respond, but good intentions aren’t always enough. The history of the disability rights movement is as much a history of fighting against the bad outcomes come of good intentions as it is a history of raising awareness in a world ignorant of disability. In the early 20th century, tens of thousands of Americans were involuntarily sterilized to “protect society” from the birth of more people with disabilities. From the many people with disabilities who are still forcibly imprisoned in nursing homes and institutions to the electric shocks delivered at the Judge Rotenberg Center, some of the worst things that happen to us are done “for our own good” and “in our name”. Even as recently as last year’s Congressional debates on legislation to prevent abusive restraint and seclusion in schools, opponents of reform argued in favor of “therapeutic restraint”, objecting to limiting restraint to emergency situations on the grounds that it should be considered a legitimate “treatment”.

This is a history we need to remember, particularly when groups run by self-advocates conflict with groups run by parents and providers. On issues like resisting overmedicalization or working to end the exception in federal law which lets certain employers pay people with disabilities less than minimum wage, we need the ability to have self-advocate voices be heard. This is all the more necessary when doing so angers those who in other circumstances are our friends and allies. Not because parents and professionals aren’t our friends – but because they don’t live our lives and don’t suffer the unintended consequences when their good intentions go wrong.

As much as we love and value our parents, friends, service-providers and allies, in the end, we will be living with the consequences of the policies and programs practiced upon us. We live with the consequences of everything that is done “for our own good”. That is why self-advocacy is important – because we have the most at stake, to gain or to lose. That is why we work and organize to build power of, by and for people with disabilities, speaking on our own behalf. The stakes are too high not to. Because in the end, good intentions just aren’t good enough.
Autism NOW Center

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