I used to be upfront with people about my disability in order to be considered special and to get attention and preferential treatment. As I grew older, I tried not to talk about it within the first ten minutes of meeting people and I would let it come up in conversation as I got to know them. It would hurt me when people asked me soon after they met me what was wrong with me, but I now understand that it was out of concern and curiosity rather than attack or maliciousness. I moved to England in 2009 and decided before I moved that I wouldn’t tell people I had an impairment. I decided to let them bring it up when they wanted to know or to bring it up when I had to ask for help. I found in Egham that people didn’t ask me, which was a huge relief. I did not have to ask for much help in my day to day life in Egham. Things changed when I moved to London. I am far more concerned about accessibility than I ever thought I would be, and this has forced me to be upfront with people about it in a different way.
Where I once was forward about my disability to get attention or to justify myself and my behavior, I am now more forward about it because I know I will need a certain amount of help from people. I tell them, ‘If I need help, I ask for it.’ I explain that I don’t like being offered help I don’t need (though I know that they are just trying to be kind and considerate) and that I don’t like being treated like I am special. I spoke with someone the other day who is currently mentoring a woman who has more severe cerebral palsy than I do; she has caretakers and other people who help her with day to day living that I am capable of doing on my own. She told me that this young woman fights with the idea of having to be openly grateful for the care she receives for things she wishes she were capable of doing on her own. I agreed. I hate that I need help at all, and I have been told that I am overly grateful when people help me with things. Friends, family members, employers, and even strangers have said to me ‘stop saying sorry’ and ‘stop saying thank you’ when I have to ask for help and accept help. I think the constant apologizing and thanking can sometimes be more problematic – or make people more uncomfortable – than the fact that they had to help me in the first place.
I recently completed a placement as part of my course and other people were upfront about my disability so that the staff would be aware of it. I clarified the extent of my abilities – and what I might need help with – when I arrived. The people with whom I worked treated me normally and like I belonged among them. They sometimes asked me if I was okay doing certain tasks; that hurt me at times but I tried to take it as support and concern rather than attack or criticism. I did my very best in the work they assigned me because I feel in work environments that I have to work twice as hard to prove my intelligence and my capability. After my placement ended, I interviewed one man I’d worked with as part of dissertation research. At the end of the interview, he said to me that he hadn’t needed to be ‘warned’ about my disability beforehand because it never factored into the placement at all. He said it never affected my work, my ability to work, or the contribution I made to that environment. I understand that he didn’t say it just to be nice or to validate me. He truly meant it. He understood why I had been upfront and why others had been upfront on my behalf, but he didn’t find it necessary or even important.
A big part of my interview with him concerned perceptions of disabled people and what people assume about me either when they see that I am disabled or they have been told beforehand that I am disabled. He said that I defy a lot of what people ‘think of’ when they think about disabled people and that I am ‘not what you would expect.’ He said that’s part of why my story and my journey to overcome my impairment are interesting. The fact that I am not what people would expect me to be opens a space for me to ‘prove them wrong’ or ‘change their minds’ based on assumptions they make when they see my impairment or they know from others that I am disabled.
I am upfront about my disability primarily for safety reasons now, but writing this has made me realize that I immediately try – when I tell people I am impaired – to prove to them that I am ‘normal’ and that I want to be treated normally. I open a space to defy what they might think of me, and to have to prove certain things to them. When I first met my chiropractor Luke, he didn’t think he could help me much because there was so much scar tissue built up behind my knees. He didn’t think I could regain the mobility I had lost. I proved him wrong – and he openly told me so – when he was able to melt down the scar tissue with just a few sessions, and when I maintained it with regular exercise. He called me a dream patient.
I like proving people wrong.