I’ve been struggling all day to think of what I wanted to say about acts of kindness without just falling into a cliche. And sometimes things like niceness and kindness can be wonderful gifts to people and other times they can be harmful. The harm can be unintentional, either by “helping” where it isn’t needed or asked for, as Rebekah Taussig so deftly explains (“But as a veteran Kindness Magnet, I’ve found people’s attempts to Be Kind can be anything from healing to humiliating, helpful to traumatic.” https://time.com/5881597/disability-kindness/ ). Or they can be harmful in the way of “enforcing silence” around “uncomfortable topics”. That’s particularly a problem in Minnesota, where I live, where there’s a lot of cultural pressure in the white world to not bring up anything that might evoke feelings or awkward conversations, which means pretending racism or other power differentials and systematic issues don’t exist.

It’s been a heavy week here in Minneapolis on the anniversary of the murder of George Floyd. Thinking about all the injustice in the world, and how much privilege I have as a white woman, and also my own participation in racism and sexism and ableism, even when I wish I wasn’t part of those systems.

So, I’ll just post this graphic I saw last year, which helps me think a bit harder about when I’m avoiding something difficult because I’m afraid of making waves. For example, yesterday I wrote that one of my goals is “mobility in my 80s”, but that phrase has been gnawing at me all day because I think it reflects some of my internalized ableism: needing more mobility aids would make my life “worse” and I’d lose independence because of the way our society is set up. My instinctive reaction is to stay as able-bodied as possible rather than to work towards a world where disabled people aren’t excluded from huge swaths of life.

@ehlers.danlos

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders