#Expert Conversations
WITH is pleased to present Expert Conversations, an ongoing series that will feature conversations with experts in the fields of healthcare, disability, digital health and philanthropy.
Today’s Expert Conversation is with Susan Mizner of the American Civil Liberties Union.
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Susan is Disability Counsel for the American Civil Liberties Union. She established the ACLU Disability Rights Program in 2012 and leads the ACLU’s strategic plan for disability rights. The Disability Rights Program litigates cases, introduces and supports legislation, and coordinates with national and state ACLU offices on disability rights litigation and policy.
Prior to joining the ACLU, Ms. Mizner served for nine years as Director of the San Francisco Mayor’s Office on Disability, directing the City’s ADA Self-Evaluation and Transition Plan and working with the Mayor, Board of Supervisors, community organizations, and local citizens on disability rights issues. Ms. Mizner also worked for seven years as the coordinating attorney for the Bar Association of San Francisco’s Poverty and Disability Rights Project. After law school, Ms. Mizner received an Echoing Green Fellowship to advocate for homeless people with disabilities.
Susan Mizner obtained her B.A. in Chemical Engineering and English from Yale University and her J.D. from Stanford University.
1) Hello Susan. Can you tell us a bit about your background, and about what brought you to disability rights at the ACLU?
I am a member of the disability community. After college, I went to live in China for a couple of years and got very sick. I had to postpone law school, and when I finally did attend, I took many of my classes from a cot. While I was there, I had the good fortune of running into Paul Longmore, an impressive disability historian and activist. He helped me recognize that I wasn’t just someone trying to figure out my life with a chronic illness, I was part of a community.
After law school, my professional work has always focused on disability rights – first with homeless people with disabilities, then as the Director of the Mayor’s Office on Disability in San Francisco. I also served on the Board of the Northern California ACLU for years, where I was always amazed by the intelligence and integrity of both the people and their work. When the National ACLU decided to expand its disability rights work, I was thrilled to have the opportunity to start the Disability Rights Program.
2) How do you describe self-determination?
One of the things I’ve learned from the world of disability rights is that self-determination is NOT pulling oneself up by one’s own bootstraps. Part of disability culture is recognizing how interdependent we all are. But, self-determination still means being the one to make decisions about one’s own life.
One of the best illustrations of what that means is a story Paul Longmore told: Paul had polio when he was young and lost virtually all use of his arms. As he became a teenager, Vocational Rehab spent a lot of time trying to get him to learn how to dress himself. This is hard to do without the use of your arms. He would spend hours each morning trying to dress independently – and then he would be exhausted and spent for the rest of the day. Finally, he said, “Enough. Getting dressed by myself isn’t what I’m good at. I don’t want to spend my whole day working at it. What I am good at is history. That’s how I want to focus my time and my energy.”
To me, this is a perfect example of self-determination. Paul decided – against everyone else’s advice – that getting dressed independently wasn’t important to him. He recognized that he had other talents and that what gave his life pleasure and meaning were his studies. As a result, he turned into a nationally renowned historian… who happened to need some help getting dressed.
3) Many parents are advised to obtain Limited Conservatorship of children with intellectual disabilities (including myself.) Your thoughts on that trend?
I think it is bad advice. Putting a young adult under a Limited Conservatorship is a drastic step. It strips your child of all legal recognition – and virtually every civil liberty. And, once under a conservatorship, it is time-consuming, expensive and extremely difficult to have it removed.
I strongly encourage parents to consider alternatives to Limited Conservatorships. We know that people with developmental disabilities develop differently and sometimes more slowly than others. But, they still develop. Their knowledge, skills, and abilities continue to grow after they turn 18. The best way for them – or any young adult – to learn how to make decisions is to practice making decisions.
I would encourage the Supported Decision-Making model, in which the young adult can choose trusted advisors to help them develop those skills, to provide advice, and to support and help articulate decisions. There are other options as well, including specific authorizations for parents to continue to participate in educational meetings, or medical consultations. There is even working with a Power of Attorney for Healthcare or Finances.
But, young adults should be given lots of opportunities – with support – to learn how to navigate the world, to exercise ‘agency,’ to make some mistakes and to learn from them. Studies indicate that people who have learned that they can say ‘no,’ that they can ask for help, are much safer in the long run, than those who are always under someone else’s ‘protection.’
It can be very hard to let go – to trust that it is the right thing to let our children take chances and make mistakes. As parents, we always want our children to be safe and secure. But, when we think about what we want for ourselves, few of us would want someone else always making decisions for us. Few of us would trade our autonomy and freedom for that ‘safety’ and security.
Thank you, Susan!
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