This is one of those cut back, mini-posts I have referred to previously: if I try to fully research and elucidate this, it won’t happen. So ...
One of the major problems in modern society - a problem that shouldn’t be happening, given our laws and education activities and activism for human rights (including inclusion) - is the difficulty of living with “invisible” (non-apparent) disabilities.
Living with any disability is often a problem (or at the least a challenge), but invisible (non-apparent - I’ll just use invisible for this post, although non-apparent is more accurate) disabilities come with a particular set of issues - especially including denialism.
To a very large extent, this reflects badly on the character of those who are causing those difficulties ... and that is a topic I cover on my main blog, and that society needs to own and start addressing in education - by countering the millennia of active, interventionist neochristian/christo-fascist and patriarchal and elitist social engineering at the very least, a social engineering / social conditioning that has been so successful and is so endemic that many people deny it or are deeply, personally offended at the suggestion that it exists.
This post, however, is more personal testimony than advocating activism, and I want to begin with diabetes.
When I was a teenager, one doctor at one stage was umming and ahhing about whether or not I could be diabetic: I don’t know what the numbers were, but clearly it was of concern. I was clearly upset at the prospect of having to do daily tests and possibly injections, so the doc settled on the side of me not having diabetes.
As it was, I was exercising a great deal because of my “spin“ (special interest - an abbreviation that comes from Matt Lowry of the “Autistic Culture Podcast”) in competitive dinghy sailing, so I just had to be a bit more strict about my diet (which was fine, as that allowed me to exercise more effectively and be a better competitor).
I don’t think that decision was wrong, as I survived into my 40s before getting an official diabetes diagnosis, and my understanding is that most undiagnosed diabetics don’t survive past their thirties. My scepticism is compounded by the fact that for much of my thirties I was living on a small boat, commuting long distances, and lacked the energy and opportunity to exercise as I used to.
In my forties, when I was diagnosed, it was at a time when I was running 7 km four or five times a week, doing two or three one to two hour weight etc exercise sessions, and sailing competitively at least one day a week.
And that raises the first problem: amathiac assumptions.
Many amathiacs assumed that, because I was initially not on insulin, that the problem could all be blamed on me being stupid (yes, I know that’s an ableist term: it accurately reflects the biases and hostility of the amathiac bigots I am referring to) and irresponsible, when it clearly wasn’t - and what makes it worse is the impossibility of convincing those small- and close-minded amathiacs of anything else.
The difficulty has become worse since I hit the first wave of ageing at 44, and the family history of arthritis combined with egregiously excessive workload and past injuries that doctors had been extremely offhandedly dismissive of (such as cartilage damage in one knee, which the doctor said I had but because I could walk [and wasn’t rich or a famous sportsperson] he wouldn’t bother with anything - not even any suggested exercises) led to me not being able to exercise, and putting on weight, which the small- and close-minded amathiacs took - wrongly - as some twisted form of “proof” of their amathiac delusions.
That was further exacerbated by further increases in workload and decline in quality of workplace culture in my mid-late 50s and during the second wave of ageing at 60.
All of this was made worse by glib incompetencies of the medical profession - who, in a half-asleep daze mindlessly support the amathiacs in conversations, and come out with irresponsible, incompetent, and unprofessional statements - bordering on “inspiration p_rn” - along the line of diabetics being “able to do anything - or at least live a normal life - with a little effort”.
Bull.
In the career I used to work in, high pressure, high stress jobs were considered “normal” (I was, at times, looking after aspects of multi-billion dollar projects with only erratic help, not a team) - and I was (a) used to that, and (b) had no exposure to anything else to seriously suggest it wasn’t normal for most of my working career, so those unprofessional lies from from the medical profession at those critical times (and I now have a doctor who is superlative - quite the opposite to those other dunderheads) were seriously, manifestly harmful to my health.
Society and especially the medical profession needs to get off the “inspiration p_rn” rodeo, stop pretending that invisible disabilities like diabetes have no effect, and start loudly and actively advocating for an end to victim blaming and implementation of proper adjustments and considerations of those with diabetes - and other invisible diabetes.
We get disbelieved because of the amathiac, unprofessional messaging of the medical profession, so it is up to the medical profession, who have a chance of being listened to, to get off their backsides and start taking action IN THE PUBLIC ARENA, just as they have done with other public health issues (water treatment, vaccinations, pandemic management, tobacco, pollution, the climate crisis, etc)!
(The medical profession also needs to stop pretending calling police for checks is safe ... )
These problems also apply, I am finding, to neurodivergence.
Looking back at my life, I can see many instances when I experienced autistic burnout, believed neurotypical people when they made statements about urgency/necessity that were basically lies aimed at boosting those neurotypicals as they cluck their way up the work pecking order, had sensory overloads and/or needs for time & space to decompress that were ignored by workplaces and/or society, and so on.
(I have been posting links to articles, news posts, and videos on the topic of neurodivergence in my weekly interesting reading posts on my main blog over the last year or so if you want to find out more.)
Autistic burnout was probably the most noticeable, and arguably one of, if not the, most severe of the problems I encountered, and certainly predominated the last decade of my working career (and, as with my having better doctor now, there were some outstandingly excellent managers and co-workers during that period - and at earlier times of my career).
Disbelief is also a major issue - and what happened to Chloe Hayden is probably a good example of what that form of abuse can do.
(Ironically, I have also run into a few extremely transphobic autistics - who, in addition to staggering lack of knowledge and other outdated bigotted views, indulged in exactly the same sort of denialism against TGD people as often gets used against autistics.)
However, there is another aspect of this which I have realised was a major problem in both my work and personal lives: what is termed “autistic voice” / “flat affect“.
I had trouble finding words for use in general conversation until I was in my 30s, when lots of writing led me to have readier access to a wider vocabulary, and I have often found finding the right words to use in verbal discussions and arguments difficult throughout my life (I prefer written communication - hence why [in part] I have stayed with blogging rather than shifting to video format).
But the issue of autistic voice really struck home to me when, during one of the Autistic Culture Podcast videos (I haven’t been able to find which one [I wasn’t thinking of a post so didn’t record it at the time I was listening] - my apologies, and I will keep searching), co-host Matt Lowry gave an example of the contrast between autistic voice and neurotypical voice, and commented how the neurotypical voice is more commonly perceived as that of a good leader.
Oh.
And just like that I understood a whole category of difficulties/challenges I have had when trying to take on leadership roles - I have done so, and successfully, but there were a host of intangible difficulties that I could now recognise. I could see why my thoughts at one stage of becoming an elected politician (which didn’t happen for multiple reasons, with concern about impacts on my family at the top of that list) would never, ever have worked out ...
I can and do mask my voice - that is, I forcibly change it into a public speaking mode when I need to (although I am unable to project well), but that, along with the sensory overloads and other impacts of crowded events, leads to me generally needing days of decompression/recovery time.
My voice was not a problem * in my community activism days a quarter century ago (it may even have been interpreted as a sign of suppressed emotion, perhaps - or authenticity [I refused to be coached into conventional forms of presentation]), but I would never have progressed beyond that.
I would have liked to, as I considered I could do a great deal that way - likely more than I do through blogging/activism/advocacy, but it was not an option for me ... because of what is often considered an invisible disability: autism.
There are prices to pay for these invisible disabilities - prices partially imposed by society’s biases and bigotries, partially by the nature of the disabilities themselves.
And I have to admit it: I am disabled ...
One note I would like to end this post on, is the value of:
“Autistic Centered Therapy (Episode 47)” https://youtu.be/FpKfJfelwSU
Please consider
PPS - another issue is that, with increased awareness of non-apparent disabilities, people often stop masking the problem, and thus their disability may seem to be more apparent. My experience is that that is just a transference - for instance, if masking during the day meant one was crippled mentally-emotionally and had to spend the evening in bed, with reduced masking during the day less will seem to be accomplished there, but the person will actually be able to do something for themselves in the evening.
On that, spoon theory has been supplemented by fork theory. See:
- https://themighty.com/topic/mental-health/fork-theory-spoon-theory-mental-illness/ - which includes the history, and describes the “fork limit”
- https://lifehacker.com/health/what-are-the-spoon-and-fork-theories - on how these two theories can make people more compassionate
If they are of any use of interest, the activism information links from my former news posts are available in this post.
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Note that, as with my main blog [see here], I am cutting back on aspects of my posts.
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