It should come as no surprise that I am a big fan of self-determination. I have the same hopes for the future that most people my age do, except my right to fulfill them is at risk because I have a disability. I mostly worry that I won’t be able to live on my own because someone thinks I shouldn’t.

Having a say in how I lead my life is the most important thing in my future. Is that so weird to admit? I have this fear that I’ll be placed in a group home against my will. It’s sort of like a nursing home approach to dealing with disabled young people, isn’t it? And equally depressing, I’m sure. Every time my mom goes to see her parents (they are both old and have dementia), she comes home with a literal black cloud enveloping her for a week. Our society doesn’t know how to empower seniors or the disabled to be actively involved in their own care. It’s like we don’t want to bother treating them like they have worth.

Surely we idealize a certain type of life – one that is independent and young and healthy. (My guess is that this includes wealth and heterosexuality too.) Ask a young person to define what success looks like to them, and I can guarantee that it doesn’t include disability or being discriminated against because they don’t fit the norm.

Having a disability eventually means that someone is going to question your worth and possibly decide what your life will look like. I have heard about a book in which the author writes about making her son have a vasectomy when he is an adult because she thinks his autism will affect his ability to be a good parent. For this reason, she is going to get guardianship of him when he is eighteen. I can’t even begin to express my disgust at this outcome. However much my autism affects my day-to-day ability to function independently, I am so glad no one wants to neuter me. Instead, my mom tries to prepare me and get me resources that take my autism into consideration. She has told me point-blank that no one was going to claim guardianship of me when I turn eighteen this summer. In fact, she said that I can go see the doctor with someone else as long as they can letterboard with me.

Really, it comes down to two things: having a means to communicate and having access to information. If one of those things is missing, a person’s self-determination will be compromised. Like the teen with the snip-happy mother, what happens when one of these factors is missing is their devaluation as a person who possesses his or her own desires and jurisdiction over their life. How tragic and devastating to a person’s self-worth! If just one parent reading this changes their mind about guardianship, I will be happy. It’s harder to help someone find some semblance of an independent life, but the alternative is to rob them of the life they want to lead.

We really have been trying to think through how to label it but not label it, davis said.

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