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.

On Organic, Autistic Space

There are unique joys to gath­er­ing with oth­er Autis­tic peo­ple in a set­ting that isn’t run by neu­rotyp­i­cals and isn’t designed with change, improve­ment, or growth in mind. Autis­tic chil­dren, youth, and adults who have only ever encoun­tered oth­er Autis­tic peo­ple in sup­port groups, social skills train­ing, or sim­i­lar set­tings are miss­ing out on friend­ship, a greater sense of self-deter­mi­na­tion, knowl­edge of com­mu­ni­ty norms, and an oppor­tu­ni­ty to divorce the idea of gain­ing real, func­tion­al social skills from that of try­ing to be indis­tin­guish­able from neu­rotyp­i­cals. These are safe places for peo­ple who may be tired of pass­ing to prac­tice being open­ly Autis­tic before they come out to the world.

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Listening Before You Speak

Find­ing the Autis­tic com­mu­ni­ty is an expe­ri­ence like no oth­er, espe­cial­ly for adults who grew up unaware of autism or unaware of peo­ple like them­selves in orga­nized groups. The strong emo­tions of home­com­ing, belong­ing or ner­vous­ness about find­ing a place to belong, pride in a new iden­ti­ty, and joy of a cama­raderie per­haps nev­er before known can be intox­i­cat­ing. The num­ber of peo­ple to meet and amount of infor­ma­tion to absorb seem infi­nite, impos­si­ble. It’s as over­whelm­ing as it would be to stum­ble through a moun­tain pass on a hike and find a lost home­land in the hid­den val­ley below.

Find­ing oth­er Autis­tic peo­ple for the first time is as intense as life expe­ri­ences get, joy­ful but also poten­tial­ly fraught. It’s an event most Autis­tic peo­ple expe­ri­ence, since rel­a­tive­ly few of us grow up with access to the com­mu­ni­ty, but rel­a­tive­ly lit­tle advice exists for nav­i­gat­ing this impor­tant tran­si­tion. One thing per­sons new to the com­mu­ni­ty should know is that they don’t need to join the clam­or of voic­es you hear imme­di­ate­ly. There are actu­al­ly at least a cou­ple of rea­sons that tak­ing some time to get ori­ent­ed before speak­ing out pub­licly may be best for you and the Autis­tic com­mu­ni­ty in the long run.

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Learn Something in 2018

Please take the time to learn some­thing about dis­abil­i­ty in 2018. There is no rea­son to think 2018 will be any less chal­leng­ing for the dis­abil­i­ty com­mu­ni­ty in the U.S. than 2017 was. The things that made 2017 so dif­fi­cult are large­ly unchanged. For that rea­son, it’s impor­tant to con­sid­er how to pro­tect the inter­ests of peo­ple with dis­abil­i­ties when prob­lems arise in the new year. One small step almost any­one can take is becom­ing more informed in 2018.

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