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dov
He/him. Founder of Tiny Golem Press, author of The Right Thing to Do at the Time & Book of Hats. #queerwriters #disabledwriters #pwME #homeboundphotography
29 Mar 20
There are so many things I loved about #CripCamp. The focus on joy, self-expression, and fierce community interdependence, as well as on sexuality. I loved the way Denise and Neil J. spoke in front of each other so frankly about their relationship/sexual histories.

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As a queer person I related so much to the kind of discovery at camp that you could be a sexual being/could be physically affectionate and expressive and that it was a beautiful and revolutionary thing. That joy was revolutionary. That community care was revolutionary.

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That listening to each other's stories was revolutionary. Not articulating this well...But, I've been homebound with ME for 6 years and before that did not identify as disabled and I find that in a way, the disabled community I've found on twitter is my "crip camp" and

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Read 6 tweets
8 Jun 19
We don't know the full story of the connections between CCI, EDS, other connective tissue disorders, MCAS, infectious diseases, and ME.

I find it really worrying that people feel the need to assert that their ME is "real" ME and people with EDS and/or CCI have "fake" ME

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Anyone who asserts that the voices of people with CCI or EDS should somehow be cut from the story of "actual ME" is in my understanding using bullying tactics to exclude and silence people whose stories matter and are an important part of the larger story of ME.

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For so many reasons.
1) ME literally means brain inflammation and pain. It is quite possible that people who present as having ME, regardless of the etiology of their illness, have similar patterns of brain inflammation and pain.

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Read 13 tweets
25 Apr 19
Really struggling. Everything feels so precarious and my crashes keep coming one after another like ocean waves that pull you back every time you try to get out of the water.

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One of the many hard things with an illness like this is there is no bottom. Things--physical, social, emotional, financial--can always get worse...

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It's so painful to never really have a sense of security of any kind while also dealing with the fact of having no control over my physical capabilities, of which I have very few.

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Read 4 tweets