Speaking with my mother recently made me sympathize with young smartasses and activists who are just waiting for the elder generation — the out of touch Baby Boomers and the Baby Boomers’ parents and kids by this point — to give up the ghost and die. A “dinosaur” or political dinosaur is someone whose philosophy and worldview are obsolete and rooted in problematic values and circumstances of the distant past. For example, as a young activist in my teens and 20s I remember thinking and saying that the world would be a better place once those who grew up with unregulated environmental pollution and legal institutionalized racism, sexism etc. died off because their environmental unconcern, racism and sexism were so entrenched that they either didn’t realize, agree or care that what they were doing and being was wrong.
Welp. After being sick my entire fucking life with an undiagnosed autoimmune disease, and going on 8 years with a diagnosed one, I am having these same thoughts now about the older generation of Western medical practitioners and others who were born, grew up and/or progenated in a low-population, relatively unpolluted pre-nuclear world where lifelong serious, untreatable, incurable and progressive disease existed only in very small numbers and therefore where older people seem to believe and act as if chronic illness did not and does not exist at all.
To be clear, chronic illness obviously did exist in our recent and distant past, for example, natural uranium deposits are known to cause acute and chronic radiation sickness to those who spend time around it. And humans have likely always been struck down with genetic and congenital maladies that might not have outright killed them. But old/er people seem to have lived their entire lives without chronic illness, including autoimmune and immune-mediated disease, front and center in their consciousness or as a part of their lived experience and this does make sense: before, say, the 1940s and 50s the worst industrial (man-made ionizing nuclear) pollutants had yet to be widely dispersed and contemporary Western medicine did not, because it could not, routinely pluck seriously ill and/or nonviable neonates, infants and others from the brink of merciful, natural deaths. Today, seriously ill children and others are rather forced to live for years, decades and lifetimes with serious illnesses that do not outright kill them, because Western medicine will not allow it, but which Western medicine has yet to figure out how to treat, relieve, or cure.
Having researched chronic illness, primarily autoimmune and immune-mediated disease for going on 8 years now, it seems to me that, in stark contrast to the life experience and worldview of older people, young people today generally are very aware that incurable and progressive chronic illness exists. Over and over I see that young people today, at least young Western people, well understand and accept the reality of chronic illness much more freely than older people, and the implications of that are extremely dark. From what I can discern, this difference in worldview likely exists because young people are increasingly becoming seriously chronically ill themselves. Young people understand and accept the material reality of chronic illness because experiencing it personally as individuals and in their peer group they have no choice but to accept it.
And over and over I see that older people are generally ignorant about issues of chronic illness and that they have not experienced it either individually or in their peer group. Frighteningly, instead of recognizing their blessed ignorance and trying to remedy it, older people think that their personal opinion based on outdated and second- and third-hand pseudo-knowledge about chronic illness matters or affects the outcome. It doesn’t, but unfortunately many medical professionals, healthcare policymakers, paid and unpaid caretakers and the like embrace an outdated worldview that no longer applies in our post-nuclear, Western world, and thus do not or cannot fully believe the self-reports of, or even contemporary peer-reviewed medical research addressing, the experiences and needs of seriously chronically ill.
A few weeks ago, a day and a half into a migraine (I’m getting 4 day migraines now, yay!) I panicked over my migraine-related inability to work on my small business, pursue benefits, or do virtually anything as I was completely and totally incapacitated. In what I can only describe as a misguided and ultimately futile cry for help, bedridden, I called my mother to update her about the situation, whereupon she made some statements of position that were so ignorant they verily shocked me. Laying in the dark with a sleep mask over my eyes, and a puke bucket near my bed, what I heard uttered from my mother’s lips was so egregiously out of touch with accepted thinking that it frankly terrified me.
Attempting to explain to her how and why she was wrong exhausted me. Knowing that she was moved not an inch by my description of my plight — instead smugly maintaining her “position” throughout as if she were engaging in a political debate rather than considering an emergency communique — enraged me.
For example, when I told my mom that I had a new diagnosis of High Functioning Autism, or HFA, she seemed unsurprised but said I wasn’t autistic as a child because I was always “bright.” Okay. 🦕 In her mind, my HFA-consistent and completely obvious lifelong deficits in executive function — think literal and figurative “housekeeping” — and social competency (including feminine roleplaying which also includes both literal and figurative housekeeping, fuck me sideways) had nothing to do with autism and instead were just me being a lifelong asshole, lazy, and a bitch. She always believed that about me and she never hesitated to tell me about it. But at least I was bright. But now, because I’m no longer a practicing attorney and a “success” and instead am struggling to maintain any quality of life as a seriously ill person with limitations, and I can’t maintain an illusion of physical health anymore if I ever could, I’m a lifelong lazy asshole bitch and a freshly minted unbright/retard on top of it. Also, there is apparently such a thing as adult-onset autism. Because she says so. 🦕 🦕 🦕
Of course, my mother’s opinion about HFA is irrelevant and obsolete where HFA-literate people today know that high-functioning autism — the bright, non-retarded kind — is a bona fide thing, that particularly HFA females are often not diagnosed until late/r in life, and that “brightness” or intelligence is often a symptom/feature of HFA and not the antithesis of it. 🦕 🦕 🦖 🦖 Autistic Tumblr — or any young autism or chronic illness related social media site — would tear that political dinosaur a new egg-hole if she dared say something so
ignorant patently false about autistics on that platform. And so they probably should if they wanted to expend the energy and if they thought it would help.
Yes, I recently discovered the dark corner of the internet known as Autistic Tumblr: young people creating content, commentary and community from the shared perspective and lived experience that autism and autism spectrum disorders (ASD) including HFA is real and has real, material effects on people’s lives. Often, those effects have nothing to do with being low-functioning, or unbright. Which is not to say that I find Autistic or Chronic Illness Tumblr a particularly sane or comforting place to be. As I recently learned myself, Autistic Tumblr is an upsetting, dystopian place where young autistics put great effort into and emphasis on “normalizing” and “validating” terrible things that rightfully should never exist at all: autistic and chronic illness related things like melting down, stimming and managing chronic fatigue, chronic pain, chronic gut issues and the like, because although most of them are much younger than me, due to their autism and (likely) related physical and mental issues they are extremely ill and can barely get through their day.
In fact, upon hearing and considering these self-reports, one might even speculate that physical and mental pain is what likely drives autistics’ trademark weird, antisocial and self-absorbed behavior, where they are in fact “bright” enough to communicate online at the very least (and often have work, school and social commitments) but are exhausted from insomnia, chronic pain and ME/CFS; anorexic because they can’t eat anything; are having infantile hand-flapping meltdowns in public or breaking into inopportune episodes of “stimming” behavior to soothe themselves and they can’t deal with people giving them the side-eye at school and work on top of it. Autistic young people are living in hell, utter hell, judging from their self-reports. Considering that vast and increasing numbers of young people are autistic, it seems likely that extreme physical and mental distress is normal for many young people now. Young people much more than old people seem to know this. People who care to put in a modicum of research know this.
To further illustrate, when I was attempting to describe my current limitations to my mother she completely dismissed me and said that when it comes to disability, one is either totally disabled or not disabled at all. Lest I misunderstand what she meant by that, she spontaneously clarified her statement to mean that if I have limitations I should be in a “home” and if I don’t need to be in a “home” then there is no reason I can’t act as if I’m not disabled at all. In other words, despite being demonstrably, seriously ill, I “should” be able to act/function as if I’m perfectly fine. Because she says so. 🦖
Of course, as I understand it, invalid “homes” are largely a thing of the past, at least in this country, having literally gone the way of the dinosaur. And many sick and injured people are, in fact, demonstrably partially disabled, where they are able to perform some activities of daily living and perhaps some higher level activities like bookkeeping and such but not all; accessing “services” to help partially and even very disabled people to live as independently as possible — and not institutionalized — is the way it works now. Partially disabled does not equal totally disabled, you sadistic Nurse Ratched, you decrepit fossil, nor does partially disabled mean not disabled at all. She then proceeded to disagree with me — and contemporary peer reviewed medical research corroborating thousands of years of human history and shared experience — that cannabis is an effective anti-inflammatory and is particularly useful in inflammatory bowel disease including Crohn’s. According to her, and based on nothing, pot isn’t an effective or necessary medicine for any condition, and it’s “merely” an effective pain reliever (!) and therefore is not actually medicine at all. Because she said so. 🦖 🦖 🦖
This ignorant, sadistic ideological fossil maintains her nursing license and continues to “care for” actual patients including sick infants and children. 🦕 🦖 Whatever “caring” means to her, and people like her: assholes who rely on frighteningly outdated material on which to form and support their opinions on contemporary medical and social issues, including contemporary chronic illness that for whatever reason is increasing in incidence and prevalence. And particularly in our post-nuclear, radioactively contaminated environment, including the toxic, autoimmune uterine environment in which many of us spend our first 3/4 of a year and which is known to cause autism. While information on Crohn’s, HFA, medical marijuana etc. is easily Googleable, and appears to be widely known by young people, apparently my 67 year old nurse mother is waiting for the news to break via Teletype or otherwise didn’t get the memo.
Of course, if I was a partially disabled man and had a wife (or mother) to perform all my executive function tasks (including bookkeeping services for my small business) for me, no one would even notice I was disabled. If I were male instead of female perhaps my life wouldn’t be falling apart at all, and certainly the prospect of committing me to a nonexistent/extinct 1940s era invalid home because I can’t wait in line or consistently do my business and personal taxes anymore would have never been raised at all.