I’ve tended to avoid being really public with my struggles around pain and disability and some of the reasons are that when you do share about these experiences it makes people uncomfortable. I don’t mean that in a rude way. I mean that people feel empathy and they want to offer sympathy or advice. These are not negative impulses.
Today is another migraine day for me. This time it’s less about light sensitivity and more about blurred vision, numb hands, and a hot needle through my pupil.
I’m not sharing this so you’ll feel bad that I feel bad. Of course I don’t want to continue to be in pain, or have to limit my life or be creative about how I work and live to compensate for pain, light sensitivity, and physical limitations.
But I’m not really looking for suggestions or what has worked for you . I’ve tried dozens and dozens of pain management tools and I use half a dozen each and every day. Sure, I believe that there still could be a new treatment that changes everything. And I don’t want anyone to argue that I’ve “given up.”
But, I’ve had migraines off and on since I was 10 years old. I’ve had knee, ankle, and back problems since high school. I’ve been in life altering, disabling chronic pain EVERY. SINGLE. DAY. Since April 19 2003. At some point, it starts to feel like an incredibly naive waste of time to continue on a quest for it to magically disappear after 16 years.
I don’t need to be pitied. I don’t even need to be cured. I don’t need to be fixed. Most disabled people don’t need those things. I’m making this life work. I have a wonderful wife and animal family. I’m an LGBTQ journalist doing work I love on great magazines like @theAdvocatemag. I’m an award-winning book author. Every day I get up early and go to bed late in order to work on Ripple Fx. My life is full and fulfilling.
I’m sharing my story about how I cope with pain and disability because disabled people are invisibilized in this society. Because you need to know that there are people in pain and disabled who are still doing things nondisabled people do. Because you need to know what it takes me to do those things, especially if you are enjoying the fruits of my labor.
Not so you’ll feel bad for me but so you’ll recognize your own privilege if you are fortunate enough to be currently able-bodied. Because all of us, if we live long enough, will deal with pain and disability.
Finding ways to fix pain and disabling conditions certainly has its validity. But so does finding ways to accept that pain and disability are an unescapable part of the human condition. So does finding ways to value every person regardless of their capabilities. So does finding ways to help people who are in pain or disabled live fulfilling lives not by curing them but by enabling them and caring for them—and listening to them regarding what help they actually want and need.
That’s disability justice.