Today, exactly 15 years ago, I moved out on my own with Supported Living Services. When I first moved out, I had no concept of independence or what it really meant to be on my own. My only time away from my parents was my summer camp experiences and the occasional respite worker. I was scared to be honest. I had 24 hour staff with me at my apartment. I remember the boss of my staff reading to me my rights, the right to privacy, the right to visitors, the right to open my own mail, etc. So many people paved the way for my rights, starting with the folks at Camp Jened from the film Crip Camp and ending with Capital People First in Sacramento fighting for the rights of people with developmental disabilities. I didn't realize how precious these rights were.
I've had my fair share of staff, good wonderful and terrible. It's funny, I've never had someone that was in between, or just mediocre. You're either wonderful, or you don't know what you're doing. I had one staff who took my goal of exercise a little to seriously and when a close friend wanted to visit she told me I shouldn't have anybody over because I needed to focus on fitness. Instead of being upset at her I rebelled against all things fitness for over a year! Not the greatest reaction in hindsight, but that's how I tend to process things. It's one of the unique aspects of my disabilities: I thought if I got into fitness that visitors would go away rather than understanding that a right of mine had been threatened. I've had to fight to have staff see that I am just like anybody else, the only difference is I need support to facilitate and be out in the community. And don't worry, I'm into fitness now and I still have visitors (depending on covid cases!) !
The staff that are wonderful, make my life richer and more complete. My world opens up and I have had so many experiences. I'm more open to doing things on my own than 15 years ago. I've often been called worldly, which I never really understood, as I only left the country recently in 2019. I understand now that worldly means experiences rather than travel. If it wasn't for my staff, I wouldn't be nearly as worldly. I would be riding the bus, maybe able to microwave pizza and hang out in my apartment room. That would be my life. With staff I've traveled, I've gone to Rocky Horror Picture Show, I've been to concerts and festivals and museums. I am also figuring out what all I can do with and without staff and I think I've found a healthy medium. My world expands because of the support I get even though to most people it's assumed that my world must be a lot smaller because of the staff support. I don't think they realize: Every decision I make, from where to live, to who I want as a boyfriend, to what we're making for dinner together, to who I have over, to what shirt I want to wear, is my decision. It is my right. For me, every day is Independence Day, and I have the wonderful people from Crip Camp and Capital People First and all my wonderful staff, past and present, to thank for that.