Autistic Future

Are You Helping

These are fright­en­ing times for Amer­i­cans who val­ue things like human rights and the rule of law. Much that is going on in the news is par­tic­u­lar­ly dis­turb­ing to the dis­abil­i­ty com­mu­ni­ty, includ­ing Autis­tic peo­ple. Many of us, espe­cial­ly those who have advo­ca­cy expe­ri­ence from the Neu­ro­di­ver­si­ty Move­ment, want to see what we can do to help. Most of us need to prac­tice good self-care to feel our best in a cli­mate which feels increas­ing­ly threat­en­ing to most mem­bers of minor­i­ty groups.* Many of us feel both impuls­es strong­ly and simul­ta­ne­ous­ly, but activism or advo­ca­cy and self-care aren’t the same thing. Often, a giv­en course of action will serve only one of those impor­tant ends. It is impor­tant to eval­u­ate which one wants to do in a giv­en moment and make deci­sions that will accom­plish the goal in question.

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The Crucial Question

The world of dis­abil­i­ty spends a lot of its time argu­ing about seman­tics. This has been par­tic­u­lar­ly true of the Autis­tic com­mu­ni­ty, some­times to an unpro­duc­tive degree, though it seems to have been less of a prob­lem recent­ly as oth­er events and con­cerns have occu­pied our atten­tion. Peo­ple who say the wrong words some­times still mean the right things. They still want self-deter­mi­na­tion for dis­abled peo­ple. Peo­ple who use the right words don’t always do what we would wish. ‘Neu­ro­di­ver­si­ty’ seems to be slapped on every­thing these days, regard­less of whether or not that thing is in keep­ing with the prin­ci­ples which came with the term in its more con­tro­ver­sial days. Seman­tics are a fair­ly weak pre­dic­tor of how a giv­en per­son or orga­ni­za­tion will think or act. How­ev­er, there is one seman­tic tell which remains very good at unveil­ing attitudes.

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April the Opportunity

Every year, toward the end of March, the Autis­tic com­mu­ni­ty braces itself for April. Peo­ple who sub­scribe to the neu­ro­di­ver­si­ty par­a­digm don’t enjoy the usu­al cav­al­cade of inspi­ra­tion porn, offen­sive fundrais­ing tac­tics, pho­tos, videos, and writ­ten sto­ry­telling vio­lat­ing the pri­va­cy of un-con­sent­ing chil­dren and adults, and requests to do the fre­quent­ly unpaid and demean­ing work of speak­ing to crowds of neu­rotyp­i­cals and some­times answer­ing very per­son­al questions. 

For those of us who have done this advo­ca­cy for a while, April some­times feels like a reprise of the time before pay­ing lip ser­vice to neu­ro­di­ver­si­ty had become some­what fash­ion­able even among peo­ple who don’t real­ly live out what it means. Those of us who live in the south­east­ern Unit­ed States tend to analo­gize April aware­ness efforts to the thick pine pollen that turns near­ly every­thing out­doors yel­low, and makes near­ly every­one sick, around the same time. It’s an unpleas­ant but inevitable part of spring.

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On Self-Respect

Respect as verb, as action rather than feel­ing, has been a hot top­ic in neu­ro­di­ver­si­ty cir­cles late­ly. This is because of a prob­lem of dis­re­spect which becomes more appar­ent as Autis­tic voic­es are includ­ed in dis­cus­sions of the issues that affect us more and more. Peo­ple are com­ing to under­stand how impor­tant it is to include Autis­tic peo­ple in dis­cus­sions of the issues affect­ing us. This is a pos­i­tive devel­op­ment, the result of years of advo­ca­cy. Unfor­tu­nate­ly, out­siders don’t always prac­tice that inclu­sion in the right ways. There are grow­ing con­cerns about undig­ni­fied tokenism and even exploita­tive labor prac­tices. While this set of issues isn’t some­thing we brought upon our­selves, no one else is going to fix it. We will be treat­ed with respect to the extent that a crit­i­cal mass of us demand it. That is espe­cial­ly impor­tant to remem­ber with April just days away.

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Disability Day of Mourning 2018

It isn’t abstract. Noth­ing about it is dis­tant. That may be the crux of why Dis­abil­i­ty Day of Mourn­ing has such res­o­nance. Fil­i­cide is not a prob­lem the aver­age Autis­tic per­son or oth­er mem­ber of the dis­abil­i­ty com­mu­ni­ty will expe­ri­ence. The list of names is rel­a­tive­ly short, though it is a harm its per­pe­tra­tors would, almost by def­i­n­i­tion seek to con­ceal in most cas­es. Though it seems like­ly there are unre­port­ed inci­dents, it is prob­a­bly a fair­ly low-inci­dence prob­lem. The rea­son we mourn and remem­ber is not that most of us will be vic­tims of fil­i­cide. It is that fil­li­cide is just a par­tic­u­lar­ly egre­gious expres­sion of a prob­lem affect­ing us all.

Peo­ple with dis­abil­i­ties are too reg­u­lar­ly treat­ed as less than ful­ly human. This is par­tic­u­lar­ly true for any­one who has an intel­lec­tu­al dis­abil­i­ty, does not com­mu­ni­cate with words, or relies on tech­nol­o­gy to sur­vive. Almost every­one who has had the oppor­tu­ni­ty to go to col­lege or grad­u­ate school, and has tak­en an ethics or phi­los­o­phy course at that lev­el, has encoun­tered casu­al debate about whether or not peo­ple with this or that kind or degree of dis­abil­i­ty should be allowed to go on liv­ing. Voic­ing the opin­ion that cer­tain peo­ple should be allowed to die, though ample resources exist to keep them alive, or should even be killed is rel­a­tive­ly social­ly accept­able. Voic­ing those views does not nec­es­sar­i­ly lead to social ostricization.

Unfor­tu­nate­ly, these atti­tudes, and the debates they dri­ve about whether some lives are wor­thy to go on, and whether some peo­ple should be enti­tled to the same legal and human rights as every­one else, are not con­fined to class­rooms. They crop up in cur­rent events, too, in the idea that lock­ing peo­ple up regard­less of whether they have ever shown any vio­lent propen­si­ties is accept­able or that it is not impor­tant for cer­tain kinds of peo­ple to be able to go out in pub­lic. It isn’t hard to see that peo­ple with dis­abil­i­ties are not always con­sid­ered full people.

The names we read, the ones we remem­ber, tan­gi­bly demon­strate what that sen­ti­ment looks like when it is tak­en to its log­i­cal con­clu­sion. If dis­abled peo­ple aren’t real­ly peo­ple, if we live less than 100% of the val­ue of human lives, killing us is not as wrong as mur­der gen­er­al­ly is. Depend­ing on the par­tic­u­lars, it may not be very wrong at all. When we remem­ber those peo­ple, when we read their names and assert that they were real, valu­able human beings by remem­ber­ing them, we’re respect­ing the dead. We’re also pro­tect­ing the liv­ing. We’re insist­ing that, despite what some peo­ple say, every sin­gle human being is worthwhile. 

Mem­o­ry mat­ters. Remem­ber­ing says some­thing about the val­ue of the lives we remem­ber and the val­ue of lives like them still under­way. Day of Mourn­ing is about the dead, about remem­ber­ing peo­ple who deserved bet­ter, assert­ing that their lives were worth­while and that what hap­pened to them was unac­cept­able. It is also about assert­ing that we, the liv­ing, deserve bet­ter, too.