Invisible Disabilities: What happens when you're disabled but nobody can tell?

[kestrell]

Here's the link, but blind readers note I share some invisible disability experiences after the link

https://www.nytimes.com/2020/07/10/style/invisible-disabilities.html?smid=fb-share&fbclid=IwAR29dfq2Ib0T-H9EvGzJlVmksLegSNV3bA_hPPVihrpHpJ-6MGmchjaXuBg

Kes: When I was growing up, I had juuuuust enough functional vision in one eye to be able to walk around, and to read with the book literally touching my nose. I didn't use a white cane or think of myself as blind because my family and ophthalmologist didn't want me to "act disabled," so they didn't even tell me how bad my vision was. I just fell down stairs a lot and spent way too much time on the wrong bus (let me tell you, spending time on the bus to Schenectady is time spent in Purgatory) , because I was so insecure, I wouldn't even ask the bus driver which bus it was. As many times as I tried to explain that sitting in the front row of class didn't mean I could see the blackboard any better, adults would just tell me to stop being lazy and try harder (confirming once again my opinion that adults would always choose to believe whatever they wanted to believe, rather than anything that upset their tiny mental apple carts).

So, yes, for the first twenty-something years of my life, my being blind as a bat was pretty much invisible to everyone around me and, to some degree, even to myself. Once I became actually blind *and* stopped worrying about people who didn't want me to "look blind," I had all this energy I used to put into passing and could do so many other things, like go to MIT. Though, when I was doing my undergrad degree at UMass Boston, I still often had the "you don't *look* blind, because you're looking at me" argument quite frequently.

So, goal for the next thirty years: Can we get rid of the "you don't look disabled" prejudice? As the article points out, we are going to have more people who have acquired invisible disabilities as a result of Covid-19, and these are going to include disabilities associated with anxiety, trauma, respiration, the immune system, the heart, and many other physical problems which we aren't even aware of yet.

Comments

Re: That's a good column

[kestrell]

Another reason the pain scale is bullshit:
From the time I can remember, and this was from about age three, I was always told to be a "big girl," and "be brace," and given all sorts of adult approval for not crying or complaining about the pain I was in, or the pain caused by the "treatment," which often included holding a pressure gauge directly to my eyeball when the eye pressure was around 70 or so (normal eye pressure gauges only go up to about forty), or even getting cortisone injections directly into my eye. So I internalized not acknowledging pain, which means when asked what my pain level was I would laugh and say "about a two or three," even when I was in severe levels of pain.

This turns out to actually not be healthy. It took me years after distancing myself from the people who expected me to not bother them with how much pain I was in before I learned to notice when I was in pain and scale back whatever I was doing and go rest.

So, what happens is, kids learn to disassociate from their own bodies, and to give family and doctors the answers they want, rather than learning how to care for themselves over everybody else.

So the whole pain scale question is typically already asked with family and doctors broadcasting the answer they really want, and a "brave" person with a disability is always going to get more positive repsonse than a "whiny" personw tih a disability.

Last year at Readercon, there was a group performance of a study an entymologist did of his personal descriptions of the experienced by vaious insect bites, stings, etc. One man even sang the responses, and they were truly operatic. I mean, these were so vivid, I wanted this pain scale to be adopted by PWD to describe their pain levels.

My other dream is a machine that will force the interrogator to physically feel the same level of pain as the person being asked the question.

Re: That's a good column

[jesse_the_k]

I went to a "speaking truth and bitterness" session at a disability studies conference where people talked about their medical interactions. No wonder so many of us have PTSD!

Yikes -- your childhood experiences make me want to break something and also run and hide.

Your dream machine is why you like horror.