Many of us have things in life that make activism challenging. My main challenge is an unpredictable, extremely unforgiving body. I have a genetic condition (Ehlers-Danlos Syndrome) affecting a connective tissue called collagen. It results in frequent injuries and pain and comes with “co-morbidities” like autonomic dysfunction. This life-long illness has progressed in severity as I’ve aged.
My health got worse in my late 20s. I tried to balance my then-undiagnosed illness with “important things” like getting divorced, going to school, and working. After being denied accommodations at grad school, I left moved back to the south shore of Boston, and worked in college Disability Services. I fought (hard) for and won accommodations at work which helped for a while, but weren’t consistent or always effective. My health continued to decline. I had to stop working because my health and healthcare required full time attention.
For too many recent years, I was disengaged – not just because of my body but also, in part, because I had internalized messages that if you can’t go to a rally or march, or make an in-person meeting, then you aren’t committed (e.g. “slacktivism”). I won’t let that stop me now. My country has deteriorated. The far right has gained too much power. I can’t hope others will fight this battle for me. One size won’t fit the variety of responses we need to mount a sustained, effective resistance to what’s happening in our country. Disabled people must seek and demand inclusion – in person marches and rallies are good, but there’s other work to be done too. I’ll do what I can, how I can, when I can. I’ll engage locally, with physical presence the rare times that’s possible. I’ll work to make sure we have the resources we need to work and resist together.