Sara Luterman

Sara Luterman

[image: Headshot of a smiling white

person with short dark hair & glasses.]

Recently, Amy Lutz, a parent advocate, wrote an opinion piece for Spectrum News titled, Adults with disabilities deserve the right to choose where to live. I wholehearted agree with that sentiment. Unfortunately, the article that follows argues nothing of the kind. It is, in fact, an argument to return people with developmental and intellectual disabilities to institutions. These new institutions have organic-biodynamic farms, swimming pools, and fluffy pillows. They are, however, still secluded and subject to all of the abuses of Willowbrook and Pennhurst.

Amy Lutz and others who mask new institutions as a “choice” do not draw a healthy or appropriate distinction between themselves and their own children. When they say, “adults with disabilities deserve the right to choose,” they mean is that their opinions are their children’s opinions. They do not believe that their children are capable of having opinions about any serious or real issues. They see their children as extensions of themselves, rather than distinct human beings.

This is a struggle many parents face, whether their children are disabled or not. It can be hard to let go. It can be hard to not see your children as extensions of your own hopes, dreams, and aspirations. Unfortunately, for disabled people, it is much easier to justify erasing the healthy line between parent and child, because we are vulnerable. When someone has difficulty communicating, it is much harder to establish healthy boundaries.

If you are a parent of an autistic child and you are reading this, I confess, I am not like your child. While I may have more similarities and shared struggles than you might expect, I do subscribe to Dr. Stephen Shore’s adage: “If you’ve met one person with autism, you’ve met one person with autism.” However, it is even more important to point out that you are not your child. It is one thing to advocate for your child when he or she is unable to advocate, and entirely another when you essentially claim that your opinion is your child’s opinion. It is incredibly disingenuous to claim “adults with disabilities deserve the right to choose where to live,” when actually, what you mean is that you would like to choose for your child to live in an institution, and for Medicaid to pay for it.

People with developmental and intellectual disabilities need help doing things many others can do on their own. Our autonomy is largely at the whims of our parents, teachers, and support staff. This is especially true for people with higher support needs. What that means is that parents, teachers, support staff, and others have a responsibility to work harder to figure out what a developmentally or intellectually disabled person’s opinion actually is. This means creating educational materials to help people make choices. It means some amount of prompting and guidance. Susan Senator’s handmade guide to help her son vote comes readily to mind. The Autistic Self Advocacy Network has been putting out a fabulous series of image-supported, easy-read policy guides on topics ranging from Medicaid to supported decision making and alternatives to guardianship.

My own opposition to institutions is not based in some philosophical ideal about the definition of freedom. Rather, it is because I know older adults who survived institutions. Many parents will rush to point out that I do not have an intellectual disability and do not need very much support to live independently. This is true. I formed my opinion on this topic by listening to people who do have intellectual disabilities and do need significant supports and by learning from them.  People like my colleagues Liz Weintraub or Evan Nodvin and the activists at Self-Advocates Becoming Empowered (SABE) have fought for the right to live normal lives, or at least lives that are as normal as possible, for decades. Listen to them. Listen to your child. Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy. You are not your child.