Telling Personal Stories

Some of the most painful sit­u­a­tions new activists get into revolve around sto­ries. What seems like the chance to do good can end in embar­rass­ment  Even if the por­tray­al, the con­tent or media that comes out of shar­ing a sto­ry, is ulti­mate­ly respect­ful, third par­ties may still project their own prej­u­dices on it. Per­son­al sto­ries told in dig­ni­fied ways can be used in undig­ni­fied ways. There is also the sto­ry­telling trap: it can feel more use­ful than it actu­al­ly is. This isn’t to say that per­son­al sto­ries should nev­er be told, but it’s impor­tant to be aware of the pit­falls of per­son­al sto­ry­telling and how to avoid them.

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Solidarity and Self-Determination

A set of handcuffs opens and falls off of one of a person's outstretched wrists.

What we want comes with respon­si­bil­i­ty.


Autis­tic peo­ple wide­ly agree that we’re bet­ter-equipped to solve our prob­lems than any­one else. Giv­en a say in what sci­ence gets fund­ed and what the orga­ni­za­tions with the biggest bud­gets do, we believe, we could tack­le many of the most seri­ous prob­lems fac­ing our com­mu­ni­ty. We demand our place in estab­lish­ing the dis­abil­i­ty pol­i­cy agen­da, insist­ing that pri­mar­i­ly par­ent-run orga­ni­za­tions should not make every deci­sion about which issues take pri­or­i­ty. Unfor­tu­nate­ly, our behav­ior doesn’t always match this stat­ed posi­tion. We demand a place at the table and then don’t always show up in the num­bers we should for cru­cial issues like pro­tect­ing Med­ic­aid.

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Are We Giving Parents Bad Advice?

Autis­tic adults often tell the neu­rotyp­i­cal par­ents of Autis­tic chil­dren to lis­ten to us. This advice is fre­quent­ly repeat­ed, and it’s such a fix­ture of dis­course in our com­mu­ni­ty that it isn’t often exam­ined. Its impli­ca­tions aren’t thought through as often as they should be. If it were, it might well have been aban­doned by now. We should stop using things like ‘hear Autis­tic voic­es’ and ‘lis­ten to Autis­tic peo­ple’ as plat­i­tudes because these state­ments aren’t effec­tive­ly explain­ing what we hope par­ents will learn and do. The old saw sets some par­ents on the path to good infor­ma­tion, but it is eas­i­ly mis­in­ter­pret­ed and some­times delib­er­ate­ly twist­ed into an excuse to avoid lis­ten­ing to what most Autis­tic peo­ple have to say.

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Temple Grandin has Opinions

This past April, Dr. Grandin sparked con­tro­ver­sy by opin­ing again, though many of her Autis­tic peers wish she would refrain from being so vocal. When she express­es her­self, it’s some­thing of a head­line with­in Autis­tic cir­cles and, often, out­side. This is because out­siders fre­quent­ly per­ceive her as an expert on Autis­tic expe­ri­ences or com­mu­ni­ty leader, although she has delib­er­ate­ly avoid­ed liv­ing in the Autis­tic com­mu­ni­ty. Dr. Grandin is rare, and jus­ti­fi­ably admired, for being well into mid­dle-age and open about her dis­abil­i­ty. In an ide­al world, younger Autis­tics could ignore her occa­sion­al, out­landish state­ments and respect her for sur­viv­ing the bad, old days just as many of us do around hol­i­day din­ner tables with cer­tain rel­a­tives.

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How to Have an Okay Autism Conference

an empty auditorium is full of chairs. there is a stage with a podium and blackboard at the front. a projector hangs from the ceiling

Con­fer­ence Sea­son is Com­ing

April is com­ing up, and with it, autism con­fer­ences. If you’re Autis­tic, you prob­a­bly know how fraught these events can be. If you’re not, you may not be aware of that because dis­abled con­fer­ence speak­ers don’t always speak up. Some peo­ple may be afraid to acknowl­edge prob­lems. Oth­ers may find trans­lat­ing the indig­ni­ties of being a dis­abled con­fer­ence speak­er from dis­abled to main­stream cul­ture and expe­ri­ence too over­whelm­ing or exhaust­ing try. Putting up with painful or uncom­fort­able things is some­times eas­i­er than explain­ing them to nondis­abled peo­ple in hopes that they will change. The chal­lenge is that cer­tain forms of dis­abled con­fer­ence speak­er-hood can be dehu­man­iz­ing. Being an Autis­tic speak­er some­times being ques­tioned about per­son­al mat­ters in front of large crowds of strangers, being asked to explain the behav­ior of Autis­tic strangers not present, and being expect­ed to polite­ly ignore any dan­ger­ous, quack autism treat­ments on dis­play. It usu­al­ly involves expo­sure to con­de­scen­sion, assump­tions about Autis­tic peo­ple, inspi­ra­tion porn, and repeat­ing autism 101 infor­ma­tion over and over again. It almost always involves feel­ing scru­ti­nized like an ani­mal in the zoo and being in close con­tact with the rep­re­sen­ta­tives of groups with which the Autis­tic com­mu­ni­ty has a trou­bled his­to­ry.

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