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- title: Neurodiversity
- url: http://tdotc.eu/2018/06/09/neurodiversity/
- hash_url: 124838e7c5f860f9dabac04bbd5b00b0
-
- <blockquote class="pull-quote">
- “One way to understand neurodiversity is to think in terms of human
- operating systems. Just because a <span class="caps">PC</span> is not running Windows,
- doesn’t mean that it’s broken. By autistic standards, the ‘normal’
- human brain is easily distractable, obsessively social, and suffers
- from a deficit of attention to detail.” — Steve Silberman, author
- of <a class="reference external" href="http://stevesilberman.com/book/neurotribes/">Neurotribes</a>.</blockquote>
- <p class="center">❦❦❦</p>
- <p>… and suffers from a deficit of attention to detail, just like
- Windows, I would add.</p>
- <p>I came across this quote while watching a semi-related video about
- autism (linked at the bottom) by Sarah and Liam Harvey. There is much
- I could write about autism—and I will probably do, in time—but today
- I’ll focus on neurodiversity.</p>
- <p>The quote from Steve Silberman hit me surprisingly hard today.</p>
- <p>Truth is, long before I realized I was autistic, I had abandoned
- Windows and discovered the joy of alternative operating systems. I had
- customized my own computer, but what I was truly cherishing, as early
- at fourteen years old was the sheer diversity of operating systems in
- existence. I knew that was called “diversity” but I did not know, back
- then, what the word “diversity” means for others today.</p>
- <p>What I did know, however, is that mentioning other operating systems
- than Windows was attracting bad sorts of attention: mockery,
- disapproval, fear, a general form of opprobrium which I quickly
- learned to avoid at all costs. Without access to a group of peers
- (that came six years later), I simply hid my technical
- endeavors. Played “make pretend” by staying knowledgeable on Windows
- developments, attempting to reskin the appearance of my software
- towards “normality” (with more or less, and often less, success).</p>
- <p>For context, remember: these were the 90s, the time where Intel and
- Microsoft were king. Computers were still super expensive. And I was
- being raised in a conservative, often reactionary
- environment. Unorthodoxy in computing was <em>seriously</em> unpopular.</p>
- <p>The discovery that one could <em>choose</em> an operating system had been
- already a foundational learning moment, which reshaped my intellectual
- endeavours and set me on a path I am still walking more than twenty
- years since. But what most fascinated me was the study of differences
- between the available options. Why these differences existed, since
- when, who was responsible for them, what kind of person was using one
- operating system more than another. And the next most astonishing,
- disappointing and emotionally devastating discovery for me was that
- <em>no one else cared</em>—to the contrary.</p>
- <p>What I was doing was not “normal”; it was <em>bad</em>, and the fact that I
- found beauty in this diversity made me even <em>worse</em>. So I hid. I felt
- lonely, guilty, and it brought me bad habits that haunt me to this
- day: I still avoid sharing what I learn or my intellectual hobbies
- with my peers, my family and my friends. Out of learned fear they
- might disapprove.</p>
- <p>And today, I hear Steve Silberman drawing this analogy between
- neurotypism and “normal” operating systems, and <em>I understand</em>—for
- the first time, ever, I understand the fears, the loneliness, the
- suffering of neuroatypicals, especially teenagers, and their parents.</p>
- <p class="center">❦❦❦</p>
- <p>The irony of the situation is not lost on me.</p>
- <p>I now wear my autism on my sleeve, and I openly and regularly
- highlight to peers and new acquaintances how it impedes my
- activities. So I often “feel” the assumptions by friends and
- acquaintances that autism has brought me pain and misery in my
- childhood; I sometimes “feel” when they censor themselves from asking
- me questions about it, to avoid re-opening imagined old wounds.</p>
- <p>The truth is, I did not <em>suffer</em> of autism. It was there, and probably
- made certain things more difficult than otherwise (especially
- respective to social interactions and friendmaking), but it never was
- something I would resent about myself. There has never been self-hate
- about this. I had sufficiently many other concerns going, and,
- foremost, I lacked so much self-awareness (…yay autism…), that it
- never came up to me that autism was a thing I should be concerned
- about, or that others may be concerned with. Not the least because I
- simply didn’t <em>know</em> I was autistic.</p>
- <p>Sure, I got bullied plenty, but the bullying was focused on other
- topics. The fact that my language use was not appropriate for my age
- group, for example. Or that I performed above expectations at school
- assignments. Or that I was doing irregular things with computers. My
- life today is more complicated because of what I experienced in
- <em>those</em> dimensions early on, but not much so because of autism.</p>
- <p>The fight to make neurodiversity visible and accepted is not my
- fight. Insofar there is a “movement”, I am not part of it. I did not
- suffer, so I do not deserve it.</p>
- <p class="center">❦❦❦</p>
- <p>The illustration used by Sarah Harvey in her video looks like this:</p>
- <p><a class="reference external" href="/2018/06/09/neurodiversity/images/neurodiversity.jpg"><img alt="neurodiversity" src="/2018/06/09/neurodiversity/images/neurodiversity.jpg?w=400" /></a></p>
- <p>I see this rainbow lettering as a cute form of <a class="reference external" href="https://en.wikipedia.org/wiki/Cultural_appropriation">cultural
- appropriation</a>. I initially figured it makes the “fight” more real,
- but on second thought I think it is meant to attract allies: those who
- already support sexual and gender diversity could perhaps be made to
- extend their support to neurodiversity by appealing to the same symbols.</p>
- <p>The parallels are striking, even.</p>
- <p>There is a similar fear and loneliness of children, teenagers and parents.</p>
- <p>There is a similar anxiety of adults who discover a new way to lead
- their existence after another existence of self-denial or self-ignorance.</p>
- <p>There is a similar fight for recognition, for acceptance.</p>
- <p>There is a similar ignorance of the masses, education to be given.</p>
- <p>There is similar active disinformation by opposing forces, politics to
- be played.</p>
- <p>There are, similarly, social rules to be learned, to be adapted. There
- are friends and family members to be accommodated.</p>
- <p>There are, similarly, traditions that cannot be continued as-is and
- must be transformed.</p>
- <p>The colors are fitting.</p>
- <p>At <a class="reference external" href="https://en.wikipedia.org/wiki/Stonewall_riots">Stonewall</a>, the transsexuals fought for the rights and acceptance of
- homosexuals, bisexuals and other deviants. The Ts <em>had</em> to fight
- as their need for medical attention and public accommodation forced
- them in the open. In our time, narcoleptics, Tourette’s, deep autists,
- and bipolars fight for the rights and acceptance of HFAs, ADHDs and
- dyslexics. They fight for us because <em>they</em> cannot hide, so they might
- as well fight.</p>
- <p>And I feel indebted to them, as much as I was grateful for what the
- Ts did for me before then.</p>
- <p class="center">❦❦❦</p>
- <p>A startup that I currently work with is very much concerned with
- “diversity.” Report after report, presentation after presentation, I
- get to hear how “we should strive for more diversity” and how “little
- diverse” our group currently is.</p>
- <p>This bothers me to no end. Ostensibly, the only thing that seems to
- matter is the Equal Opportunity laws and the percentage of female and
- non-white employees (and, after sufficiently many employees, the
- number of medically handicapped hires, as mandated by law).</p>
- <p>I mean, I get it, the fact that there are only two women in a team of
- 20+ engineers is a Problem with a capital P, one that needs serious
- attention. Ditto for the number of non-white employees. The ratios
- inside the group should really mirror that of the population at large,
- and currently they don’t, so there’s work to do. And I am fine with
- that work.</p>
- <p>But can we, please, not call this “lack of diversity”?</p>
- <p>Every time I read or hear that “we have a diversity problem” or “our
- team is not diverse,” I feel that I am being pushed back in the closet.</p>
- <p>Cultural diversity is an asset. International backgrounds make people
- more mindful accepting of different value systems. Conversations get
- lifted away from simple banter. With more than ten different cultural
- and a large combinatorial multiplication by several socio-economic
- backgrounds, this team has very little risk let discussions and
- decision-making become biased by poorly defined “common sense” or
- “shared values” and instead focuses on more tangible and objective arguments.</p>
- <p>Sexual diversity is an asset. This group is even right on track there:
- as the group grew, the overall gender balance (including non-technical
- staff) is getting better, and I was happy to discover that the second
- openly gay staff member was a woman. It’s almost as if women and men
- have an equal probability to be gay, and that a small team can display
- the same ratios as the general population. What a surprise, right?!</p>
- <p>Neurodiversity is an asset. One of the most fun, smart, entertaining
- and foremost beloved team members is an <span class="caps">ADHD</span> lighthouse. I am <em>so</em>
- proud and grateful to be able to see them as a publicly recognized
- (and rewarded) model that I can follow. There is a demographically
- appropriate distribution of dyslexia, autism, <span class="caps">OCD</span>, <span class="caps">SPD</span> and other
- divergences, and the surrounding social group is amazingly tolerant
- and embracing of this diversity. So why does it not get reported on,
- acknowledged, celebrated?</p>
- <p>Why do I still get to hear that “we have a diversity problem”?</p>
- <p class="center">❦❦❦</p>
- <p>June 18 is <a class="reference external" href="https://en.wikipedia.org/wiki/Autistic_Pride_Day">Autistic Pride Day</a>. Be there, be proud. I probably will.</p>
- <blockquote>
- <p class="center">❦❦❦</p>
- </blockquote>
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