I have a confession:
There have been times where someone says something offensive toward me in regard to my disabilities, and I do not speak up. Instead, I answer their really uncomfortable and perhaps rude inquiries with a smile. I do not announce myself in conversation, I don’t let them know that the word “retarded” and “cripple” have been used against me growing up, as opposed to poking fun at myself, those words were poking fun at me and hurting me.
I don’t let strangers know that in order to touch my wheelchair, you need to have a great degree of trustworthiness that takes time to build. Nor do I let my friends know that having you wheel my chair for me is a sign of said trust in our friendship and you as a person, Instead I let out a meek, “I got it” and go about my way.
I do not let people know that visiting my apartment is kind of a big deal, because unlike the outside world, my apartment is accessible. My apartment puts me in control.
And these are important conversations to have. I have the right to ignore a question completely, and I have the right to take a moment with you and explain to you, the outsider, why asking me how I use the bathroom is inappropriate, in the hopes of saving someone else some breath and straining from the inevitable eye roll.
I feel guilty though, for not saying anything about how my vulnerabilities interfere with my day to day life, because I want to be seen as “cool” or “lax” about these issues.
The older I get though? The more I’m learning to speak up. I’m letting strangers know that when they touch my wheelchair it’s not okay, and I’m letting people know of the power of words and how it is my language reflects my ownership of disabilities in terms of my writing, but when it comes to social situations, this is a whole new territory for me.
I fear being seen as a “wet blanket” or a “Debbie Downer” each time I either confront someone that has made me uncomfortable or try to take a moment to actually talk about what I go through every day as opposed to just write about it. Disability does not exist in a vacuum. It never has and never will, but I’m learning.
Much like the people I encounter every day I’m learning what is and is not acceptable behavior toward my existence as someone with disabilities, although, more importantly, I am learning how to vocalize feeling uncomfortable without feeling victimized. I’m learning to be able to say, and not just write about how my life differs than the life of my peers.
I’m slowly but surely no longer wondering how I can make those around me comfortable, but rather, asking myself if I’m comfortable around others.
And I find this helpful, not only in the relationships I have with my peers and for the education of strangers and children, but in the relationships I have with my healthcare providers and PCAs as well. If I do not find my healthcare plan to be beneficial for me I let them know. If I do not find being put on another medication to be something I would be comfortable with, I ask questions. I ask them to explain their reasoning, and in the event that I disagree, I let them know. If they do not use first-person language, I correct them.
As I’ve said, it’s rather unsettling at first, but speaking up is important and while I know that writing these articles is a part of exercising this, I’m eager to see where furthering the journey in self-advocacy is going to lead me.