We do not have such safeguards. I tried to research any kinds of measures that might measure for vulnerability, or indices, or.... For 10 years, I worked as a nurse in mental health. How could we avoid having coercion? How could we ensure...?
I'm very concerned, especially with respect to young people, because even in my own process, I had a time when I was new in my disability. I crawled around on my soft underbelly for many years thinking that I just didn't want intervention. I once walked in and said that to my doctor. I've had the same doctor since 1989. I said to him, “I don't want anything.” He said to me, “Carmela, I'm not going to accept that. You're only 38.”
That was my first “helmet shake” that maybe my life was worth something. I kind of let that cogitate, and I went and made a personal directive. It was sort of like, well, God made the world in seven days, okay, so maybe I'll let people gather to say goodbye and then we'll pull the plug. I have that directive. I was in the process of revising it when, ironically, I got pneumonia, ended up in urgent care, and then ended up in ICU. That's this hospitalization right now. I've been here since December 11.
As that was happening, I was terrified. I was terrified to come to ICU because of Carter, but also, as I went along in my process, I started to become involved in the peer support movement. I became involved with other people with disabilities. I also have had many medical conditions, and people have said that because I have a head injury, I can't get brain injury rehab. I can't get occupational therapy.