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

[alexxkay]

And you've got fibromyalgia and arthritis.

That's a good column

[jesse_the_k]

For too many non-disabled people, "disability" is defined as
a) can't work for money
b) something I can readily perceive

Invisible disabilities are so frustrating!

Learning to believe that I'm not just lazy or "out of shape" or "too sensitive to pain" took a long time. Especially because doctors dismissed my experience so much. One more reason the 1-to-10 pain scale is so frustrating: every time I've responded with more than a six, the medico questioning me says, "Really?" Like, you asked motherfucker and I answered.

Sonya Huber's book Pain Woman Takes Your Keys is a wonderful meditation on the topic.
https://www.bookshare.org/browse/book/1725425

Her alternative pain scale:
https://sonyahuber.com/2015/08/10/alternative-pain-scale/
The photo shows someone gripping a spoon in their fist between the middle and ring fingers.

One more COVID sequel will be folks who get post-viral fatigue syndrome (CFS/ME), currently calling themselves "long haulers."
https://www.npr.org/2020/06/11/874612941/coronavirus-long-haulers-have-been-sick-for-months-why

Post-viral fatigue tipped the scales for me: my fibro started around age 12, as well as life-long mental health issues. Until I could no longer work for money, I felt like a disability imposter. That I worked with blind and deaf people who prided themselves on being healthy didn't help. That I'd worked with blind and deaf people who used assistive technology to improve their lives is why I was able to get a wheelchair without shame.

Arthritis is also a weird one because it's common, age-related, and two very different experiences. My osteoarthritis is blooming all over my body as I age, and it's certainly a drag. But it's not a rheumatic, immune-mediate disease.

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.

Re: That's a good column

[kestrell]

We've had a week of thunderstorms and rain in Boston, so my arthritis has been very frustrating. I get it bad in my hands and feet (oddly, there is this one toe on my left foot which often feels the worse, I have no idea why, I wear very roomy shoes and slippers). Earlier this week, I had two days of feeling so exhausted, I was seriously worried, with no diea what caused it. I got a talking blood pressure monitor but, of course, by the time I received it two days later, I felt better, and my blood pressure was absolutely normal (like, almost identical to the example given of a healthy number). Then of couse there is the accompanying stress of feeling sick during a pandemic, and if anyone is going to be asymptomatic, it is going to be me, the medical mystery. I'm not even kidding about that last one: there are so many traning videos of me from my neurologist/otolaryngologist/dentist that, if you put them all together, I'm pretty sure a virtual Kestrell could be constructed.

Re: That's a good column

[jesse_the_k]

I keep reminding myself that we've all been invaded by a non-consensual daemon process -- the apocalyptic existential threat -- so our brains and bodies are not behaving typically.

(Like today I've been furious about a fight I finally realized I'd never even had with MyGuy. Never even mentioned it.)

AHHHHHHH! Training videos! On the one hand, way to contribute to medical science and maybe help some other crip down the line. On the other hand ---- aiiiiiiii! My primary care doc is on the faculty of the med school here so he often has baby docs following him around like little chicks. I don't even let them in the room.

Re: That's a good column

[kestrell]

I finally told my neurologist that I couldn't go over my medical history every time I had an appt. with him and he wanted me to tell the story again to another intern. I haven't actually seen my neurlogist at any of my appts. since then, but instead see the practicing nurse, who is even more useful because she is open to discussing new theories without just issuing biased opinions as facts.

Re: That's a good column

[jesse_the_k]

Good on you for putting your foot down.

One of the few benefits of my HMO's endless cost-cutting crusade is there are more nurse practitioners and physician's assistants. They're cheaper for the HMO, and as a group they seem much closer to the patient frame of mind than the I-am-a-God viewpoint that medical training pounds into baby docs.

[duskpeterson]

Another problem with thinking that only visibly disabled people are disabled: I truly thought until age 38 that nearly everyone was able-bodied. I thought that only a tiny minority of people were disabled. I also thought that 99% of people remained perfectly well till the moment they died.

Then I became partially sighted, and practically everyone I knew started talking to me about their disabilities or chronic illnesses.

[kestrell]

I know, right? And the people who don't have a disability themselves often have family member/friend/partner who has a disability, and sometimes it is the non-disabled person who is more radicalized when it comes to disability issues and how PWD get treated.
I'm certain the one out of five statistic is a significant underestimation, because it doesn't take into account the people who either are unwilling to admit they have a disability, or have not recognized that they have a disability.

[duskpeterson]

And I don't imagine it takes into account people whose disability hasn't been noted by anyone official. I know that I'm disabled by arthritis, because I can't take jobs that require me to sit or stand for long periods - in other words, every job I've held in the past. But when the official diagnosis finally arrived of what I had (after I'd had ten years of undiagnosed pain), my doctor said, "Oh, I see from your radiology reports that you have osteoarthritis. Well, do you need any refills on your current medications?" That was it. He wasn't even going to discuss my diagnosis with me.

(I've changed doctors since then.)

[kestrell]

I am *so* glad that you changed doctors.

I realize that discussing what happens *after* the medical diagnosis and beginning the process of getting the patient that bureaucratic piece of paper which confirms that the person is disabled is time-consuming in a day where doctors only have fifteen minutes to see a single patient, but the doctors are the gatekeepers in this process and, as I often say, you're not officially disabled until the piece of paper says so.