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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Day of Mourning 2017

Tonight, peo­ple will gath­er around the world to mourn per­sons with dis­abil­i­ties killed by their care­givers. Some have loved ones who also remem­ber and miss them. Many were kept so iso­lat­ed by those who would even­tu­al­ly mur­der them that they were large­ly strangers to the world. Their mem­o­ries are lit­tle more than names we read at vig­ils because they were ours, though we did not know them, and maybe an old school pic­ture online. It’s good that we remem­ber them. We wouldn’t be peo­ple, much less a peo­ple, if we didn’t remem­ber our dead. While we mourn, though, we can’t for­get the liv­ing.

If things go bad­ly with health­care and ben­e­fits law, more peo­ple will die in the months to come. There won’t be many col­or­ful sto­ries of vio­lence to attract media atten­tion. These deaths won’t make the news. We won’t hear about most of them. They will hap­pen qui­et­ly in ERs, fam­i­ly homes, and nurs­ing homes. Peo­ple who are just bare­ly hang­ing on at the mar­gins with the access to ser­vices and care that they have now will fade away almost unno­ticed. Many more will slide into a liv­ing death in facil­i­ties. The peo­ple we loose will look like the aver­age per­son on a Day of Mourn­ing vig­il list: extreme­ly vul­ner­a­ble because of youth, age, or a sig­nif­i­cant impair­ment, iso­lat­ed. They’re ours, too, whether or not we know them, and we owe them our loy­al­ty, our advo­ca­cy. Care about them, too. If you live in the U.S. and are for­tu­nate enough to be able to attend a vig­il, think about reach­ing out to your rep­re­sen­ta­tive first.

Who Will We Be?

Com­mu­ni­ties are fun­ny things. They don’t exist until a crit­i­cal mass of peo­ple believe they do. They’re sto­ries that come to life if peo­ple tell them loud and long enough. Behave as if a peo­ple exists, go through the motions deter­mined­ly until it stops feel­ing arti­fi­cial, and some­thing will start to solid­i­fy. The sto­ry of an Autis­tic peo­ple that we are telling togeth­er becomes more tan­gi­ble every day, but we have time to make deci­sions while things are still mal­leable. Espe­cial­ly as we enter a time of adver­si­ty in the U.S., we need to make choic­es about what turns this nar­ra­tive will take.

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Net Neutrality and Us

a map of the internet on a black background. it looks like neural connections

By The Opte Project — Orig­i­nal­ly from the Eng­lish Wikipedia; descrip­tion page is/was here., CC BY 2.5,

Peo­ple are born, labeled, and self-iden­ti­fied with autism all the time, but the dis­tance from there to “dif­fer­ent, not less,” the neu­ro­di­ver­si­ty par­a­digm, cul­ture, com­mu­ni­ty, and becom­ing Autis­tic is a big­ger leap. It’s not an intu­itive move because it’s down­right counter-cul­tur­al in a soci­ety that often treats dis­abil­i­ty as a less­er, unde­sir­able, less human way of liv­ing. Con­sid­er how you or your loved one cov­ered the dis­tance from diag­no­sis or real­iza­tion to here. It prob­a­bly had some­thing to do with the inter­net. Some peo­ple find out about autism online, real­ize it describes their expe­ri­ences, and come to iden­ti­fy with it or seek a diag­no­sis. Some peo­ple grow up know­ing about their dis­abil­i­ty and even­tu­al­ly find parts of the inter­net where peo­ple teach them a nar­ra­tive that has more to offer the Autis­tic indi­vid­ual than the main­stream assump­tion of infe­ri­or­i­ty and accep­tance of the med­ical mod­el. A lucky hand­ful of peo­ple have had some­one sit down and explain neu­ro­di­ver­si­ty and Autis­tic iden­ti­ty IRL, but the peo­ple offer­ing those things usu­al­ly picked them up in Autis­tic regions of the inter­net.

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