Through out her life, Alice Wong was encouraged to feel like a burden, to just go away. She refused.

Disability is often the result of a "terminal disease." But people with disabilities can, and do, lead lives of dignity. Death should not be seen as the most noble or "dignified" option for them.

I don’t want a society where it’s easier to be sick and get a meeting about getting help for ending your life than it is to get a meeting to get help to stay in your home, find a therapist or get healthcare. (This seems to be happening in Canada with MAiD)

Also, as a scholar of disease (and the criminalization of disease) I am DEEPLY skeptical of when the law deems someone as having a “terminal disease.” In much of the world, having HIV is legally considered having a “terminal disease.” But w treatment & housing, it need not be!

Reading this was a really good reminder that unlearning shame is necessary for our survival, our communities, and our overall well-being.

Three books down. This one will stay with me.

All this brings up past moments of shame and trauma, from past relationships and childhood, etc., making it harder for me to voice my needs in basically all other areas of life.

I have very little recourse because Novartis (who makes the good med) stopped helping those of us not on Medicaid or Medicare with free medication access. My body is falling apart, and I'm exhausted from fighting for almost three years with insurance alone.

I'm trying to get better at talking about what's been going on — the fact that our insurance company is forcing me back onto a medication that doesn't work as well for me because they refuse to cover the one that does.

When I'm in that headspace, the thing I generally do is retreat from people and life.

Because it feels easier to go it mostly alone when the burden of existence is really high... and because my ability and energy to mask my autism goes down to basically nothing.

I think, for me, that it's also trauma-related. I've experienced a lot of medical and insurance-related trauma over the last few years, and this on top of caregiving and burnout has quite frankly broken me quite a bit.

Price unpacks how shame isn’t just personal, but cultural and structural. It's reinforced in schools, workplaces, healthcare systems, and other spaces meant to support us. Instead of feeling supported, we continue to feel judged and like we can't bring our full selves along with us.

I spend a lot of time thinking about systems that quietly teach people we're the problem, that we're too much or not enough, too difficult or broken.

I also conversely think a lot about how I'm way too much. 🫠