I continue to be astonished by the ways allistic humans and ableism in culture and society snarl the traces on the discourse about neurodivergent humans. The matter has now become neatly polarized as media and science seem unable to realize that yes, any spectrum disorder and all neurodivergent emergence/expression in humanity is and will continue to be on a spectrum.
Trying to ‘draw a line’ between formerly labeled ‘low’ or ‘high’ function is to entirely miss the point. Of course we must provide workable supports and resources for the entire spectrum. Why wouldn’t we? Making parents and autistic adults fight “for” their fair share of supports and resources is exactly what everyone has looked upon science and media to communicate and educate the world. Instead, it seems most are content to argue this as if an ‘either/or’ scenario.
The motto, ‘Nothing about us without us’ does not differentiate here for a damn good reason. Why must this world insist upon doing so? Right now, the IACC and many other, clearly well-meaning outlets are trying to ‘solve’ for the ‘epidemic’ of children being diagnosed with neurodivergent conditions. They are largely ignoring transition-to-adulthood, adults, and seniors who are neurodivergent.
It has become so ridiculous that there are now academics suggesting that this is somehow a problem that can be resolved by absolving eugenics and cultural/societal bias by, apparently, diffusing the conversation to the point that one could easily be forgiven for forgetting they are talking about an actual human being:
“Disability is the product of an interaction between the characteristics of a disabled person and the environment around them.” – Patrick Dwyer at https://doi.org/10.1159%2F000523723.
This notion that cultural, societal, and institutional challenges are because of ‘characteristics’, heavily implying the ‘characteristics’ are the problem, not the environments, not the other humans. It reads no less rank than any other dismissive treatment on “how to manage these neurodivergent humans”.
None of the physical environments have agency or autonomy, but those who create, manage, and operate them? These certainly do. The degree to which allistic and ableist truths are completely overlooked in Dwyer’s paper, even ignored, is strikingly telling of a more entrenched bias in both health care and academia – one which has vested interest in fighting for every grain of dirt in this mountain of ableist philosophy about those who are different from themselves.
The semantic linguistic gymnastics to avoid a simple, factual statement:
Humans are not “dis”-abled, they are disempowered, and most often by humans like this one, who enjoys their own words so deeply that no space remains for those of us affected and impacted by the systems that emerge, once again, largely without the input or perspective of the affected and impacted, usually in the name of proclaiming progress while managing to assure it doesn’t upset the academic’s right to continue discriminating against the full spectrum of neurodivergent humans by assuring we’re the last ones consulted on any of this.
We may not be PhDs, but we can still tell when our agency and autonomy is being taken from us.
You are PhDs, so why are you still not getting this? Stop focusing on the ‘problem we are’ and focus instead on the ‘problem we have’.
The need for this change started when we identified these are unique neurotypes. Most of medicine, mental health, academia, and science treat this like an outlier when it’s much more likely to be the beginning of a new era of insight to exactly how impossible both ‘normal’ and ‘neurotypical’ actually are within humanity. Few are interested in that conversation and this will make things much more culpable in future.
As a human who was late for diagnosis because decades of false narrative around ‘boys only’ assured it, it seems specious and self-serving that this discourse continues to fashion these diminishing ‘conclusions’ when they so clearly are rebuked to a one by any meaningful interaction.
“As scholars and activists have observed in connection to cognitive theories about autism in general, autistic people have been denied characteristics that are commonly considered part of what it is to be fully human, including empathy, morality, a sense of self, imagination, narrative identity, integrity; introspection, self-hood, personhood; rhetoricity, gender, meaning-making, sociality, or flourishing (McDonagh, 2013; Milton, 2012; Rodas, 2018; Yergeau, 2018).”
– Anna Stenning via https://www.ncbi.nlm.nih.gov/books/NBK568484/#sec7_2.
The mountain of allistic and ablest misunderstanding is already Himalayan, and still the debate over our actual person-hood seems to continue, unabated.
Meanwhile, everyone is trying to find and clamber aboard the funding and grants train to produce more opinion and debate and frameworks, all of which insist upon centering anything and everything excepting US, the affected and impacted. It is a common thing, tragically. All disabled humans and most neurodivergent humans can share stories for days about this.
Meanwhile, day to day, very little changes for autistic humans like me. Still unemployed because no company will give me the accommodations I need, still struggling to find any supports at all because I’m not a child, and still very well aware that both anecdotally and clinically, I am summarily diminished and dismissed the moment I am, in any manner, visibly neurodivergent:
“Recent research confirms that neurotypical people rapidly negatively judge and are less willing to interact with autistic individuals (DeBrabander et al., 2019; Sasson et al., 2017).”
– Patrick Dwyer, citing this, apparently not understanding how it tilts his suggested framework, via https://doi.org/10.1159%2F000523723.
I have spent more than a little time thinking about this, and it seems pretty obvious to me that the problem needs to be clearly stated if we’re to have any hope of a workable solution. So, then, the problem statements:
1. Disability, at core, is a negative and diminishing judgment of a human’s lifetime value, expressed as economic potential.
2. The fundamental problem in need of solving is:
- The inappropriate judgment of a human’s lifetime value, AND,
- The expression of that value as being appropriately and solely economic.
3. Neither of these problems have a thing to do with the autistic human nor their ‘characteristics’.
4. All of these problems require cultural, economic, societal, systemic, and institutional remedy.
5. That no one will engage when these terms are baldy stated? A usual denial that must be overcome.
The discourse, of which I will never have access, continues. There is, I think, a decided reluctance on the part of this world, entire, when it comes to challenging fundamental concepts that upturns cherished beliefs like exceptionalism, meritocracy, and superiority.
Or the rank stench underlying each of them – eugenics.
I’m sure Dwyer means well in this, but I’m equally sure that until allistic bias and ableism is rooted out of academia, problems like this cannot help but continue.