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4 years ago
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  1. title: Neurodiversity
  2. url: http://tdotc.eu/2018/06/09/neurodiversity/
  3. hash_url: 124838e7c5f860f9dabac04bbd5b00b0
  4. <blockquote class="pull-quote">
  5. “One way to understand neurodiversity is to think in terms of human
  6. operating systems. Just because a <span class="caps">PC</span> is not running Windows,
  7. doesn&#8217;t mean that it&#8217;s broken. By autistic standards, the ‘normal’
  8. human brain is easily distractable, obsessively social, and suffers
  9. from a deficit of attention to detail.” — Steve Silberman, author
  10. of <a class="reference external" href="http://stevesilberman.com/book/neurotribes/">Neurotribes</a>.</blockquote>
  11. <p class="center">❦❦❦</p>
  12. <p>… and suffers from a deficit of attention to detail, just like
  13. Windows, I would&nbsp;add.</p>
  14. <p>I came across this quote while watching a semi-related video about
  15. autism (linked at the bottom) by Sarah and Liam Harvey. There is much
  16. I could write about autism—and I will probably do, in time—but today
  17. I&#8217;ll focus on&nbsp;neurodiversity.</p>
  18. <p>The quote from Steve Silberman hit me surprisingly hard&nbsp;today.</p>
  19. <p>Truth is, long before I realized I was autistic, I had abandoned
  20. Windows and discovered the joy of alternative operating systems. I had
  21. customized my own computer, but what I was truly cherishing, as early
  22. at fourteen years old was the sheer diversity of operating systems in
  23. existence. I knew that was called “diversity” but I did not know, back
  24. then, what the word “diversity” means for others&nbsp;today.</p>
  25. <p>What I did know, however, is that mentioning other operating systems
  26. than Windows was attracting bad sorts of attention: mockery,
  27. disapproval, fear, a general form of opprobrium which I quickly
  28. learned to avoid at all costs. Without access to a group of peers
  29. (that came six years later), I simply hid my technical
  30. endeavors. Played “make pretend” by staying knowledgeable on Windows
  31. developments, attempting to reskin the appearance of my software
  32. towards “normality” (with more or less, and often less,&nbsp;success).</p>
  33. <p>For context, remember: these were the 90s, the time where Intel and
  34. Microsoft were king. Computers were still super expensive. And I was
  35. being raised in a conservative, often reactionary
  36. environment. Unorthodoxy in computing was <em>seriously</em>&nbsp;unpopular.</p>
  37. <p>The discovery that one could <em>choose</em> an operating system had been
  38. already a foundational learning moment, which reshaped my intellectual
  39. endeavours and set me on a path I am still walking more than twenty
  40. years since. But what most fascinated me was the study of differences
  41. between the available options. Why these differences existed, since
  42. when, who was responsible for them, what kind of person was using one
  43. operating system more than another. And the next most astonishing,
  44. disappointing and emotionally devastating discovery for me was that
  45. <em>no one else cared</em>—to the&nbsp;contrary.</p>
  46. <p>What I was doing was not “normal”; it was <em>bad</em>, and the fact that I
  47. found beauty in this diversity made me even <em>worse</em>. So I hid. I felt
  48. lonely, guilty, and it brought me bad habits that haunt me to this
  49. day: I still avoid sharing what I learn or my intellectual hobbies
  50. with my peers, my family and my friends. Out of learned fear they
  51. might&nbsp;disapprove.</p>
  52. <p>And today, I hear Steve Silberman drawing this analogy between
  53. neurotypism and “normal” operating systems, and <em>I understand</em>—for
  54. the first time, ever, I understand the fears, the loneliness, the
  55. suffering of neuroatypicals, especially teenagers, and their&nbsp;parents.</p>
  56. <p class="center">❦❦❦</p>
  57. <p>The irony of the situation is not lost on&nbsp;me.</p>
  58. <p>I now wear my autism on my sleeve, and I openly and regularly
  59. highlight to peers and new acquaintances how it impedes my
  60. activities. So I often “feel” the assumptions by friends and
  61. acquaintances that autism has brought me pain and misery in my
  62. childhood; I sometimes “feel” when they censor themselves from asking
  63. me questions about it, to avoid re-opening imagined old&nbsp;wounds.</p>
  64. <p>The truth is, I did not <em>suffer</em> of autism. It was there, and probably
  65. made certain things more difficult than otherwise (especially
  66. respective to social interactions and friendmaking), but it never was
  67. something I would resent about myself. There has never been self-hate
  68. about this. I had sufficiently many other concerns going, and,
  69. foremost, I lacked so much self-awareness (…yay autism…), that it
  70. never came up to me that autism was a thing I should be concerned
  71. about, or that others may be concerned with. Not the least because I
  72. simply didn&#8217;t <em>know</em> I was&nbsp;autistic.</p>
  73. <p>Sure, I got bullied plenty, but the bullying was focused on other
  74. topics. The fact that my language use was not appropriate for my age
  75. group, for example. Or that I performed above expectations at school
  76. assignments. Or that I was doing irregular things with computers. My
  77. life today is more complicated because of what I experienced in
  78. <em>those</em> dimensions early on, but not much so because of&nbsp;autism.</p>
  79. <p>The fight to make neurodiversity visible and accepted is not my
  80. fight. Insofar there is a “movement”, I am not part of it. I did not
  81. suffer, so I do not deserve&nbsp;it.</p>
  82. <p class="center">❦❦❦</p>
  83. <p>The illustration used by Sarah Harvey in her video looks like&nbsp;this:</p>
  84. <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>
  85. <p>I see this rainbow lettering as a cute form of <a class="reference external" href="https://en.wikipedia.org/wiki/Cultural_appropriation">cultural
  86. appropriation</a>. I initially figured it makes the “fight” more real,
  87. but on second thought I think it is meant to attract allies: those who
  88. already support sexual and gender diversity could perhaps be made to
  89. extend their support to neurodiversity by appealing to the same&nbsp;symbols.</p>
  90. <p>The parallels are striking,&nbsp;even.</p>
  91. <p>There is a similar fear and loneliness of children, teenagers and&nbsp;parents.</p>
  92. <p>There is a similar anxiety of adults who discover a new way to lead
  93. their existence after another existence of self-denial or&nbsp;self-ignorance.</p>
  94. <p>There is a similar fight for recognition, for&nbsp;acceptance.</p>
  95. <p>There is a similar ignorance of the masses, education to be&nbsp;given.</p>
  96. <p>There is similar active disinformation by opposing forces, politics to
  97. be&nbsp;played.</p>
  98. <p>There are, similarly, social rules to be learned, to be adapted. There
  99. are friends and family members to be&nbsp;accommodated.</p>
  100. <p>There are, similarly, traditions that cannot be continued as-is and
  101. must be&nbsp;transformed.</p>
  102. <p>The colors are&nbsp;fitting.</p>
  103. <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
  104. homosexuals, bisexuals and other deviants. The Ts <em>had</em> to fight
  105. as their need for medical attention and public accommodation forced
  106. them in the open. In our time, narcoleptics, Tourette&#8217;s, deep autists,
  107. and bipolars fight for the rights and acceptance of HFAs, ADHDs and
  108. dyslexics. They fight for us because <em>they</em> cannot hide, so they might
  109. as well&nbsp;fight.</p>
  110. <p>And I feel indebted to them, as much as I was grateful for what the
  111. Ts did for me before&nbsp;then.</p>
  112. <p class="center">❦❦❦</p>
  113. <p>A startup that I currently work with is very much concerned with
  114. “diversity.” Report after report, presentation after presentation, I
  115. get to hear how “we should strive for more diversity” and how “little
  116. diverse” our group currently&nbsp;is.</p>
  117. <p>This bothers me to no end. Ostensibly, the only thing that seems to
  118. matter is the Equal Opportunity laws and the percentage of female and
  119. non-white employees (and, after sufficiently many employees, the
  120. number of medically handicapped hires, as mandated by&nbsp;law).</p>
  121. <p>I mean, I get it, the fact that there are only two women in a team of
  122. 20+ engineers is a Problem with a capital P, one that needs serious
  123. attention. Ditto for the number of non-white employees. The ratios
  124. inside the group should really mirror that of the population at large,
  125. and currently they don&#8217;t, so there&#8217;s work to do. And I am fine with
  126. that&nbsp;work.</p>
  127. <p>But can we, please, not call this “lack of&nbsp;diversity”?</p>
  128. <p>Every time I read or hear that “we have a diversity problem” or “our
  129. team is not diverse,” I feel that I am being pushed back in the&nbsp;closet.</p>
  130. <p>Cultural diversity is an asset. International backgrounds make people
  131. more mindful accepting of different value systems. Conversations get
  132. lifted away from simple banter. With more than ten different cultural
  133. and a large combinatorial multiplication by several socio-economic
  134. backgrounds, this team has very little risk let discussions and
  135. decision-making become biased by poorly defined “common sense” or
  136. “shared values” and instead focuses on more tangible and objective&nbsp;arguments.</p>
  137. <p>Sexual diversity is an asset. This group is even right on track there:
  138. as the group grew, the overall gender balance (including non-technical
  139. staff) is getting better, and I was happy to discover that the second
  140. openly gay staff member was a woman. It&#8217;s almost as if women and men
  141. have an equal probability to be gay, and that a small team can display
  142. the same ratios as the general population. What a surprise,&nbsp;right?!</p>
  143. <p>Neurodiversity is an asset. One of the most fun, smart, entertaining
  144. and foremost beloved team members is an <span class="caps">ADHD</span> lighthouse. I am <em>so</em>
  145. proud and grateful to be able to see them as a publicly recognized
  146. (and rewarded) model that I can follow. There is a demographically
  147. appropriate distribution of dyslexia, autism, <span class="caps">OCD</span>, <span class="caps">SPD</span> and other
  148. divergences, and the surrounding social group is amazingly tolerant
  149. and embracing of this diversity. So why does it not get reported on,
  150. acknowledged,&nbsp;celebrated?</p>
  151. <p>Why do I still get to hear that “we have a diversity&nbsp;problem”?</p>
  152. <p class="center">❦❦❦</p>
  153. <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&nbsp;will.</p>
  154. <blockquote>
  155. <p class="center">❦❦❦</p>
  156. </blockquote>