AUTISTIC FUTURE: A FUTURE OF OUR OWN

Reaching People

lighthouse in the fog

Are Neurodiversity’s Most Crit­i­cal Ideas Easy Enough to Find?

 

This may be remem­bered as a par­tic­u­lar­ly inter­est­ing moment in Autis­tic cul­ture. Unlike four or five years ago, we are not locked in a sin­gle, all-con­sum­ing strug­gle. With less to tie us all togeth­er, things are more cliquish, but the prob­lems, solu­tions, projects, and endeav­ors on which peo­ple spend their time are more diverse. Peo­ple are mak­ing promis­ing for­ays into art and lit­er­a­ture. Inno­v­a­tive plat­forms like NOS Mag­a­zine and Psych Ward Reviews are meet­ing needs by fill­ing impor­tant infor­ma­tion­al gaps. There is growth and devel­op­ment. New ideas are cir­cu­lat­ing, and grow­ing num­bers of peo­ple are will­ing to take the risk of writ­ing a nov­el or launch­ing a web­site.

Read More…

Disability and Disaster

Rippling waters rise as raindrops fall.

The Urgency of Dis­as­ter Plan­ning

The Caribbean suf­fered ter­ri­bly, but Flori­da escaped the worst of Hur­ri­cane Irma. Still, vul­ner­a­ble peo­ple there weren’t safe. Nine nurs­ing home res­i­dents in Hol­ly­wood Hills, Flori­da suc­cumbed to the heat when their facil­i­ty lost pow­er. These extreme­ly vul­ner­a­ble peo­ple with dis­abil­i­ties lost what­ev­er time was left to them, what­ev­er liv­ing there might have been. It seems like­ly that there will be pun­ish­ment or com­pen­sa­tion, but it’s impos­si­ble to return what was lost. The most trag­ic part of the whole sit­u­a­tion may be that the dead weren’t killed by the storm through flood­ing, wind, or the col­lapse of a build­ing. They didn’t die of the con­di­tions that caused them to need the help that was regret­tably unavail­able to them out­side of an insti­tu­tion. They died, most­ly, of slip­ping through the cracks in the plans of every­one around them. They died because no one could be both­ered to pre­vent it.

Read More…

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.

Read More…

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.

Read More…

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.

Read More…