AUTISTIC FUTURE: A FUTURE OF OUR OWN

November 19th, 2016

My Friend The Tiger: Autistic History Month Part 1

What the hammer? what the chain,
In what furnace was thy brain?
What the anvil? what dread grasp,
Dare its deadly terrors clasp!”
-William Blake
 
I.

I met the internet when I was five. Home from school with strep throat, I was allowed to play with it unsupervised because my parents, never particularly technologically aware, thought it was harmless. I came to two important realizations that afternoon:

1) There was something I could reach through the hulking box of the desktop in the living room that was, if not exactly living, close enough. It seemed very young but growing rapidly, hungry for new information.
 
2) We were going to be friends.

As I grew up, my sensibilities about what lives in the machines became more ambivalent. We both got bigger, stronger, and more capable. I became a solid, boring adult, the kind of person who can be trusted to manage money, who reminds loved ones to change their timing belts and not shop online with debit cards. My old friend developed differently. When we met, it seemed something like a human child. It turned out to be a ‘tiger’ such as Blake described, still a cub, on the scale of the Industrial Revolution. It’s beautiful and terrible, volatile, and unforgiving. I can’t pretend to like everything it does.

I have to give the inter­net cred­it, though, for tak­ing care of me. As I grew up, I learned to hold enough of the vast world tree of con­nec­tions in my head to fore­cast its next moves and plan around them. These days, I get paid to do that. It also gave me what­ev­er I asked, work, friends and con­tacts, infor­ma­tion, and more. When I found the Autis­tic com­mu­ni­ty and my own need to pro­tect it, the inter­net offered me a cor­nu­copia of tac­tics and tools for that strug­gle. It was the long enough lever and place to stand with which dis­abled kids with cheap lap­tops and furtive, cof­fee shop con­nec­tions could move the world.

It pro­vid­ed shock absorp­tion on the rough road of advo­ca­cy. The internet’s ter­rain always seemed to curve in the direc­tion of keep­ing me out of trou­ble. I had a way of attract­ing only the right kind of atten­tion, stay­ing out of the way of angry mobs. There are unsa­vory char­ac­ters in the Autis­tic com­mu­ni­ty, peo­ple who like to call them­selves activists and pull oth­ers down to feel pow­er­ful and dis­tract from how lit­tle they’ve actu­al­ly done. When they looked around for peo­ple to try to harass and defame into pari­ah sta­tus, their eyes nev­er land­ed on me, though I nev­er tried to be incon­spic­u­ous. At times when I stayed away from our activism because of prob­lems in the com­mu­ni­ty or neglect­ed my online pres­ence because of com­pet­ing com­mit­ments, my exis­tence online didn’t atro­phy as much as it should have. As I trad­ed in the reflex­es I had at six­teen for expe­ri­ence, more nuanced respons­es, and the calm of one who has seen this before -what­ev­er ‘this’ is at any giv­en time- I won­dered if this would change. It didn’t. The tiger that mauled oth­er peo­ple con­tin­ued to bat at my phone when I tried to ignore it like a big house cat. I did my best to accept this strange bless­ing with­out ques­tion, but I’m not that kind of per­son. I con­tin­ued to won­der about it until I read Neu­rotribes.

I was going to wait until win­ter break of last year to read it, but I knew that review­ing it while it was fresh would do my blog good. Think­ing of it as a chore to shore up my read­er­ship, I bought a copy and resolved to slog through. I’d nev­er in my life felt so exposed, but I couldn’t stop read­ing. It was the sto­ry of my fam­i­ly.


When the stars threw down their spears
And water’d heaven with their tears:
Did he smile his work to see?
Did he who made the Lamb make thee?”
-William Blake
 
II.

My maternal great-grandfather grew up in the Carolina mountains with their genetic bottlenecks of isolated, rural communities. This was an old fashioned kind of place where life into the early 20th century looked much like the 18th. He had a brother who would probably be described as nonverbal Autistic today. Uncle Wade spent most of his life in an institution. The family was locally prominent but quirky, full of voracious readers, assertive women, and nontraditional household configurations. My great-grandfather’s parents employed a farmhand who lived alone in a small cabin and read the dictionary for fun. The man was so hyperlexic that visitors unfamiliar with him often assumed that he was an important and well-educated guest. Though the outside world ignored their community, the family always read the newspaper and talked about what was going on in the world.

My great-grand­fa­ther came down from the moun­tains to go to col­lege. His par­ents were near­ly self-suf­fi­cient and cash-poor, but he was able to work and most­ly put him­self through. I don’t know why he stayed in the low­land South. Maybe he liked it bet­ter. Maybe he was fol­low­ing the avail­abil­i­ty of work. He mar­ried anoth­er inter­est­ing woman, a non­con­formist who nev­er let her hus­band con­trol her in the ways that were nor­mal in the ear­ly 20th cen­tu­ry. They had sev­er­al chil­dren. One was my grand­fa­ther, who loved the moun­tains and loved machines. Read­ing and writ­ing were always chal­leng­ing for him, but my grand­moth­er could do those things. They built a suc­cess­ful busi­ness around the care and feed­ing of pret­ty much every­thing that runs on diesel but isn’t a gen­er­a­tor or a train. My moth­er, quirky in her own ways, suc­cess­ful in a vari­ety of careers, was their third child. She did remark­able work in con­ven­tion­al, pro­fes­sion­al set­tings, but car­ing for par­ents and chil­dren was the choice she made when she could. She moved us to North Car­oli­na, where I spent sig­nif­i­cant time around my grand­par­ents. I knew my grand­fa­ther well for six very for­ma­tive years.

He had dis­cov­ered the word ‘dyslex­ia’ when I was diag­nosed and found that it explained his dif­fi­cul­ties in school. As I got accom­mo­da­tions and found aca­d­e­m­ic suc­cess, he lived vic­ar­i­ous­ly through my ris­ing grades and grow­ing com­fort with the writ­ten word. He was delight­ed that some things would just be eas­i­er for me. Though it was painful­ly obvi­ous that he had inter­nal­ized the many times peo­ple called him ‘stu­pid,’ he had man­aged to pro­tect a hard-won sense of the val­ue of who he was and what he knew. He had done this alone, with no dis­abil­i­ty com­mu­ni­ty, against all the world. He shared these things with me. He got me to read books about the land and how indige­nous peo­ples and ear­ly set­tlers used it. He got me out­side, encour­ag­ing mud­dy pur­suits like catch­ing toads. I remem­ber some expla­na­tions of sim­ple machines and elec­tric­i­ty. He taught me the Morse code he picked up as a radio gun­ner in WWII. He and my moth­er went out of their way to make sure my sis­ter and I respect­ed peo­ple who worked with their hands, peo­ple who did valu­able and nec­es­sary things with­out much for­mal edu­ca­tion. They ensured that we spent time in the moun­tains as often as pos­si­ble and got exposed to Appalachi­an music and cul­ture.

My grand­fa­ther came late to the inter­net and loved it for its speed, its reach, the val­ue-add to his life that came from being able to find oth­er old men who appre­ci­at­ed vin­tage trac­tor engines and obscure hand tools. He kept his desk­top from the mid-‘90s to the end of his life. As far as he was con­cerned, that big, old box had enough fire­pow­er for some­one who did his home­work by oil lamp in high school. Ask­ing for more would be hubris or ingrat­i­tude. Ten years ago, in the wake of his death, we were all to wrapped up in our grief to think about get­ting into those forums and telling peo­ple he was gone. I still feel a lit­tle bad about that. I took his phone num­ber, and his dig­i­tal life may have had some­thing to do with old men who called me as recent­ly as 2011 look­ing for parts for equal­ly ven­er­a­ble bull­doz­ers.

 


Part 2 of this Autis­tic His­to­ry Month essay is now avail­able here.

 

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