Where Would I Be Without Self-Advocacy?
I’m riding a crowded train home from work and a woman behind me sets her bag on my head. I’m sitting in my wheelchair, so I guess it makes sense because I’m at the right height.
“Excuse me,” I say. “That is my head.”
“Oh!” she says with what I hope is alarm and embarrassment, and finally gathers her belongings to herself.
I wish this wasn’t the only time, but frankly, I have lost count. While I don’t like being bashed in the head with bags, I refuse to cave and start wearing a football helmet. Shouldn’t it be other people who avoid hitting me with their stuff and not me trying to dodge their luggage?
If I didn’t speak up for myself, I would be nowhere.
Defined as representing oneself or one’s interests, self-advocacy to me is not only about standing up for myself, but also advocating for my full inclusion in a world that frequently excludes people with illnesses and disabilities. From the youngest age, I had to speak up to be included and refused to be left out.
But self-advocacy also is crucial in the medical world, which can defer to clinical judgments instead of acknowledging and integrating the wisdom of the patient. For example, I’m the one who makes the call about treatments and other health decisions. My doctors share their expertise, but I am the one deciding. My health care is only at its most effective if I am engaged in my own treatment and well-being.
Sometimes I wonder how I became a self-advocate.
I think that my parents taught me because they could not be with me at all times and knew that I would have to stand up for myself. But I also think it was an invention of necessity.
I quickly learned that no one was going to open the door for me, I needed to open my own doors. If I wanted to go to college, then I had to study and earn it, then fight to go. If I wanted to work, then I had to work hard, prove my value, and then doubly prove that I could do the job despite my severe rheumatoid arthritis. It never felt like anything was handed to me. It was self-advocacy.
But isn’t it exhausting?
Sometimes it feels like a constant fight. I wake up and leave the house, then start fighting: let me on the elevator. Let me on the train. Let me get down the sidewalk. Let me do my job. And then the same thing in reverse. Self-advocacy can be darn tiring.
Sometimes, I am just cranky. I am tired of saying the same thing over and over again to different strangers: yes, I can work. Yes, I have joint deformities and disabilities from my rheumatoid arthritis. Yes, I’m just trying to live my life, thank you very much. Self-advocacy can feel more like a never ending crusade than an empowering point of view.
I know at times that I can be too sharp. Like on the train home when a woman leans on my wheelchair handle and I point at her and yell “no” like she is an untrained puppy. She jumps and takes her grip off my chair with a whine about needing something to hold while the train is in motion. I try to regain my cool: “That is not what I am for.” The train car has handles for that sort of thing. I use my self-advocacy to remind others that I am a person and not furniture. Sometimes the bar is low, very low.
But self-advocacy is worth it despite sometimes being tiring because I have the fulfilling life that I have always dreamed I would have. I am a full participant in my community, my work, and my relationships.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?