Caution: Language. Swearing. Discussion of ableism. Examining privilege, and I may not get it 100% right and I’m going to keep trying.
We’re having a bit of a heat wave here in New England. And so the word of the day today is “hypohidrosis“. Hypohidrosis is one of the manifestations of my autonomic neuropathy. The short version of what it means is that you don’t sweat enough, in my case I don’t sweat much at all anymore in response to heat. Longer version of what it means: yesterday, sitting on my porch in 90+ degree weather with > 60% humidity, my skin was dry as a bone. Hypohidrosis is dangerous. It can make it difficult or impossible for your body to cool itself off when you’re hot. Oour body’s cooling system, or at least a very important part of it. Not enough sweat means if you
Just for the hell of it, because I know some folks who like to respond to complaints about disability access by pointing to other disabled people and saying that THEY don’t have a problem with x, y, or z (that I’m complaining about)…. let’s consider how this symptom’s functional effects can be affected and mitigated by privilege. I’ll use myself as an example because I am most familiar with my own life.
I am a white, straight, gender non-conforming but mostly cis-presenting woman who was raised in an extremely abusive and low income home as a child. I have no children. I have chronic progressive health problems which onsetted in my childhood but which were isolated enough until I was in my early 30s that I did not consider myself disabled even if others did. I do consider myself disabled now, and I ascribe to a mixed model of disability. Here’s a list of some of my privileges and how they interact with my hypohidrosis:
- While my husband and I have zero family wealth to draw on (no inherited cars, no assistance paying for housing, school, transportation, medical expenses, etc.), we still had enough privilege between the two of us to manage to work long enough at high enough paying jobs and to have low enough expenses prior to my getting very sick that we could save money to buy a house with central air conditioning.
- We have a newer car with functioning air conditioning.
- My husband has a job that pays enough that I we can live on his income plus my SSDI, so I don’t have to go out to work in a building where, if I’m lucky, I will get to fight with my coworkers about the temperature in our workspace.
- I can afford to pay the extra amount of money to use my area’s public paratransit “on demand” ride system (through Lyft). I can afford the smartphone and the internet connection you need to set up and use my areas paratransit on demand ride system. So I don’t have to take the paratransit or public transportation, both of which are not reliably air conditioned and would put me at risk of fainting or getting sick while trying to get to things like medical appointments.
- I have enough left over money after insurance (and copays and coinsurance), housing, and transportation expenses to be able to afford to buy cooling garments and accessories.
- I can afford to buy new or used warm weather clothes that fit the body I now have, which is substantially smaller than the body I had last summer.
- I can afford to buy juice and ginger ale and other things that taste better than water with salt and sugar mixed in for re-hydration (just because I don’t sweat appropriately doesn’t mean I don’t get dehydrated).
That’s ONE symptom. And that’s a set of my privileges that buy me a bit of function despite it.
So the next time you witness some asshole saying “well my aunt / friend / neighbor / brother-in-law’s cousin is disabled and they can still (fill in the blank)” consider that this asshole’s aunt / friend / neighbor / brother-in-law’s cousin either isn’t disabled in the same way as the person they are being compared to, or has enough privilege to buy their way out of a certain level of disability. And maybe point it out to them.
Extra credit: apply this reasoning to the straw debates.