The work that I do as a Disability Awareness Consultant has hinged on telling my truth around disability. I have become obsessed with uncovering, exploring and deconstructing how disability feels. I aim to go beneath the surface, and touch the heart of the disability experience.
When I look at the work I have done accessing my disability, I am happy that I can see it as the best part of who I am. I firmly believe that I am defined by my disability, and while I couldn’t be where I am without it, I also can’t pretend that it doesn’t fuck me up from time to time. There are moments when the experience of disability—living in this body—embodying this experience, full of intersections is hard as fuck, and I want the opportunity to tell my disability part of that story. I want my disability to understand how it has affected me, and how sometimes just for a split second I hate it. I wrote my disability a letter to let it know what that feels like.
Because of you, I am always nervous and scared that I am “too much.” I am in a constant state of uncertainty that you will scare someone away, or that I did something wrong, because I am disabled and haven’t had the opportunity to be socialized like everyone else. I hate that you make me worry so much that I will never be good enough, that I am not worthy of all the things.
I lay awake some nights and wonder what my relationships might be like if you weren’t around. Would I be so scared or anxious? Or would I have all the things that I dream of—partners who wanted to know me and spend time with me? Would I still live on the cusp between personhood and poverty?
Sometimes, I worry that all everybody sees is you and not I? In that same breath, I hope that they don’t ignore you as a part of my experience. There are days where I wish we weren’t so close, days where I wish you weren’t there with me at all.
I wish that when I liked a boy, you weren’t the first thing that popped in my head – worried more than I should be about what they think. I wish that you didn’t make me question and second-guess everything about everything.
I get angry with you sometimes when I think about my Dad leaving. Even though it has been years, and I have a man in my life whom has filled that role better than anyone ever could, deep down inside I know you are the reason my birth father left. You spooked him, Disability, with all your needs and requirements. It’s because of you I think that no one will ever stay.
I look at my body sometimes – spine fused, spastic arms, lanky, limp legs, and I wonder if anybody actually finds me attractive. I have worked at incorporating you into my sexiness, but sometimes, holy fuck, it’s hard. What would I look like if I could walk, Disability?
On the other hand, Disability, you have helped me find community. I have been able to connect with so many great people, and have been able to tell/hear stories that no one else would understand. You’ve helped me find a job, and create a name for myself. You have put me in a unique position to help others, and I can’t thank you enough.
I just want you to know what it feels like to be with you, Disability.