No one has ever said to me that I can’t be part of something because my “body is weird”. In fact, I’ve masked my pain and limitations so well that I get invited to do all kinds of things that I can’t or shouldn’t do (like hiking or down hill skiing), so I either do them and pay the price or keep declining with excuses. Sometimes that means people keep pressuring me (which is very tiresome) or it means they make assumptions about me (I’m lazy, or afraid to try new things, or I don’t “take advantage of what life has to offer”). Truth be told, I’ve also made a lot of those judgments about myself before I was diagnosed and I didn’t have any other way to articulate why I didn’t want to do certain activities. This was especially a problem when I lived in the White Mountains of New Hampshire and in Zurich, Switzerland! Minnesotans are a bit more at ease with the idea of couch potatoes, although I do fend off plenty of people extolling the virtues of snowshoeing (just—no no no) and cross country skiing.

What’s been harder for me lately is feeling like I can’t participate in other parts of life. I’ve actually had to take a break from participating in a zen meditation community because I got so injured trying to follow the “correct” form (again, pre-diagnosis). And I haven’t felt I could join any of the racial justice protests over the past year; I just cannot stand around for hours, or sit in a folding chair for hours, or deal with the sun and the lack of bathrooms. I have days where I know those barriers are real, and I have days where I judge myself and think I’m just making excuses for my “laziness”.

I’ve actually been trying to stop using words like “lazy” and “self-indulgent”. I’ve stopped guilting myself about shopping on the internet and have started viewing that as one way to support my body—if I can eliminate trips to stores it saves my energy for other things (like cooking food, doing PT, or visiting loved ones). Home delivery services and activities moving online have been a surprising boon for disabled people—there are suddenly more options and more ways to be included. Employers suddenly realized that work from home is viable. It’s frustrating that disabled folx have been saying this for years and many people weren’t listening, but I hope the cultural adaptations we’ve made during the pandemic have a long lasting positive impact on some accessibility issues.

I was afraid to use the word “disabled” to describe myself for a long time, partly out of respect for other people. I didn’t want to “trivialize” what others were going through. But since getting my diagnosis, and starting to articulate my experience (I’ve been working on some essays about my life, and my partner and I have a lot of hilarious conversations around “oh, your body doesn’t do ____?”) I’m seeing the many, many ways that my condition (and some non-EDS things) impact my life. I’m starting to be vocal about being disabled and having invisible disability and an invisible chronic illness. I no longer think “disabled” is a bad word, although I do subscribe very strongly to the “social model” of disability—the “impairment” because of a disability is true only when contextualized (here is one article that give a good explanation Medical Model of Disability versus Social Model of Disability – Living with Disability and Chronic Pain). I also very strongly recommend the book _Sitting Pretty_ by Rebekah Taussig (https://rebekahtaussig.com/portfolio/sitting-pretty/) or her great article here Here’s Why Kindness Toward Disabled People Is Complicated | Time )

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