Autistic Future
November 2nd, 2019

Autistics Speaking Day 2019

Like most Autis­tic hol­i­days, Autis­tics Speak­ing Day came about because an ableist event was tak­ing place on social media. We dis­rupt­ed it. By chance, it falls at the same time of year when many cul­tures remem­ber their dead. That has me think­ing about a rel­a­tive sus­pect­ed of being Autis­tic, how far we’ve come, and where we are now. At the moment, I have grave con­cerns about what I see going on and its impli­ca­tions for our con­tin­ued progress. The same sus­pi­cion of qual­i­fi­ca­tion and exper­tise that has swept the world late­ly seems to be reach­ing us. I see grow­ing con­tempt for the peo­ple who are work­ing on the most con­crete, sub­stan­tive issues that affect how long and well Autis­tics live, and I see it led by peo­ple who show no indi­ca­tion of plan­ning to take over or step into that life­sav­ing work and fix­ing what they think is being done wrong. If they suc­cess­ful­ly under­mine the rep­u­ta­tions of peo­ple who get us seats at the tables where deci­sions are made about us, I pre­dict dire con­se­quence for the most vul­ner­a­ble Autis­tics. Lives will be harsh­er, short­er, and less than they could have been much as that rel­a­tive’s, my great-great-uncle’s, was.

He was born in 1895 on the east­ern fringes of the Car­oli­na moun­tains, where his fam­i­ly, my fam­i­ly, set­tled on what I think was Cataw­ba land around 150 years before. Wade’s par­ents were both promi­nent mem­bers of their small com­mu­ni­ty. It soon became obvi­ous that Wade had a devel­op­men­tal dis­abil­i­ty, prob­a­bly autism. As he grew up, he began to like walk­ing in the woods by him­self. That fright­ened his fam­i­ly. Pub­lic ben­e­fits for peo­ple with dis­abil­i­ties did­n’t exist in Wade’s com­mu­ni­ty at that time. Even if it occurred to them to pri­vate-pay for some sort of home care, Wade’s par­ents saw so lit­tle cash in any giv­en year that the cost of that might well have been more than their whole income. The only option they saw was the big state hos­pi­tal, so that was where Wade went. He spent the rest of his life there. I’m sure there were no more walks in the woods. I’m not sure any­one vis­it­ed him. It would have been a long, hard trip over the roads of those days for his par­ents and sib­lings.

How­ev­er, I sus­pect the rea­son Wade became a fam­i­ly secret had more to do with stig­ma and fear than ear­ly cars and unpaved switch­backs. By the time he was a young man, eugen­ics was con­sid­ered a pub­lic health best prac­tice and writ­ten into state law. Wade’s sib­lings who left the farm and the imme­di­ate­ly sur­round­ing envi­rons weren’t vis­i­bly dis­abled, but there was quirk­i­ness flow­ing through the fam­i­ly. It had­n’t nec­es­sar­i­ly mat­tered in the moun­tains, where they grew up prac­ti­cal­ly in the 18th cen­tu­ry. In the 20th, where they found them­selves as adults, this kind of nat­ur­al vari­a­tion was con­sid­ered a prob­lem to be stamped out. Being white, mid­dle class, and edu­cat­ed offered some pro­tec­tion, but it was­n’t a good time to be unusu­al or to be relat­ed by blood to any­one who was. Acknowl­edg­ing Wade might have seemed dan­ger­ous, espe­cial­ly for one of his broth­ers, my great-grand­fa­ther. An edu­ca­tor mar­ried to a nurse, it seems implau­si­ble that he was unfa­mil­iar with the con­cept, pol­i­cy, and prac­tice of eugen­ics as he watched his mid­dle son strug­gle con­spic­u­ous­ly with lit­er­a­cy dur­ing the most active years of North Car­oli­na’s eugen­ics pro­gram. My great-grand­fa­ther does­n’t come across as a laid-back father in fam­i­ly sto­ries. Did part of the inten­si­ty and per­fec­tion­ism in his par­ent­ing come from a nag­ging fear of what might hap­pen if any­one took a sec­ond look at his out­ward­ly respectable fam­i­ly? We tend toward long gen­er­a­tions, so I’ll nev­er know. My great-grand­fa­ther died just a few years before I was born at age 94.

Indeed, all of Wade’s full sib­lings who sur­vived ear­ly child­hood enjoyed long lives. They lived ful­ly, the kinds of lives that pack a funer­al ser­vice to the rafters. Mean­while, days passed for Wade with no choic­es, no hope, and no vari­ety. His life was one of thou­sands writ­ten off and thrown away because of atti­tudes toward peo­ple with dis­abil­i­ties. The con­di­tions in big insti­tu­tions at that time were bru­tal: bad food, poor or absent med­ical care, abuse, neglect. In a fam­i­ly where peo­ple who don’t make 80 are thought to have died young, Wade only got 68 years. He passed away in 1964. Maybe dein­sti­tu­tion­al­iza­tion would have ben­e­fit­ed him if he had lived a lit­tle longer, but that was­n’t how things worked out. My grand­fa­ther only learned that he had an Uncle Wade as an adult, when my great-grand­fa­ther abrupt­ly announced that he need­ed to go home for his broth­er’s funer­al. Years lat­er, my moth­er tracked down an order­ly from the hos­pi­tal who said he cared for Wade. The order­ly remem­bered him as a nice per­son. That is the sum total of what I know about Wade plus a lot of con­jec­ture and extrap­o­la­tion from his­tor­i­cal con­text. If there ever were pho­tographs of him, they don’t seem to have sur­vived. Wade, a man my moth­er should have known as a child, was more utter­ly erased than the events sur­round­ing my fam­i­ly’s mul­tira­cial her­itage that took place 200 years ago.

The only good news here is that what hap­pened to Wade isn’t nor­mal any­more. Peo­ple with I/DD have bet­ter life options than being swal­lowed up by vast, pur­ga­to­r­i­al facil­i­ties and large­ly oblit­er­at­ed from mem­o­ry. The last cen­tu­ry has been a time of remark­able change. That brings me to my con­cerns about where our com­mu­ni­ty is now. The changes that have come about required years of work by peo­ple with a diverse group of skill sets, peo­ple who could imag­ine a bet­ter world than any they had ever seen. It took protests, lit­i­ga­tion, pol­i­cy work includ­ing leg­is­la­tion, inves­tiga­tive jour­nal­ism, and the kind of self-advo­ca­cy that tells the audi­ence what it needs to hear rather than what it wants to hear. It took more than charis­mat­ic peo­ple voic­ing strong opin­ions with­out doing much else, espe­cial­ly edi­to­ri­al­iz­ing among peo­ple who large­ly agree. It took more than memes about iden­ti­ty and self-care, talk­ing friends through bad days, and rack­ing up fol­low­ers on social media. There is noth­ing wrong with any of those things. They are some­times enjoy­able or mean­ing­ful, but none of them were suf­fi­cient to make our lives bet­ter in the past. They still aren’t now. It took peo­ple with knowl­edge beyond their own sto­ries.

Things may not be as bad as they were in the ear­ly 20th cen­tu­ry, but the Autis­tic com­mu­ni­ty has a long way to go. Like Wade’s, our lifes­pans are still sta­tis­ti­cal­ly short­er than our neu­rotyp­i­cal peers’. Our rates of pover­ty and unem­ploy­ment are appalling. Autis­tic peo­ple still face dis­crim­i­na­tion in many areas of life. Too many of us are still lan­guish­ing, not unlike the way Wade did. We betray those peo­ple when we do any­thing oth­er than con­tin­u­ing to move for­ward. We betray them when we act like hav­ing opin­ions and talk­ing about them is good enough. We betray them when we under­mine the hard work that needs to be done, and the peo­ple who are lead­ing not so much a cri­tique as a rejec­tion of the wonks, nerds, and pro­fes­sion­als are guilty of that betray­al. Every­one in our com­mu­ni­ty or claim­ing to serve it should be held to account when they make mis­takes or wrong oth­ers, but peo­ple who cast vague, fac­tu­al­ly ques­tion­able asper­sions on those who are mak­ing Autis­tic peo­ple’s lives bet­ter in con­crete, iden­ti­fi­able ways are wild­ly irre­spon­si­ble. They are stand­ing in the way of the alle­vi­a­tion of suf­fer­ing and wast­ed life and the pre­ven­tion of ear­ly, need­less death.

I hate to give dire warn­ings on a hol­i­day, but this seems like an impor­tant thing to speak about. If you don’t like the way some­thing is being done, say some­thing or take it on, your­self. Don’t pro­mote blan­ket rejec­tion of the peo­ple who are doing what is nec­es­sary to reduce the num­ber of peo­ple who spend their lives lan­guish­ing and suf­fer­ing, nev­er get­ting to expe­ri­ence the full mea­sure of human life. Wade Tay­lor died before the promise of the Neu­ro­di­ver­si­ty Move­ment could be kept for him, before neu­ro­di­ver­si­ty was a word any­one used, before many peo­ple con­tem­plat­ed the pos­si­bil­i­ty that my col­lege-edu­cat­ed great-grand­fa­ther and his broth­er, Wade could share some fun­da­men­tal equal­i­ty, before he got much chance to live. Don’t be a con­tribut­ing fac­tor in that hap­pen­ing to even one more per­son. Make your­self use­ful, by join­ing the work or through cri­tique that is spe­cif­ic and mean­ing­ful, or get out of the way. We must keep mov­ing for­ward. We owe that much to liv­ing and dead alike.

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