AUTISTIC FUTURE: A FUTURE OF OUR OWN

June 27th, 2016

Disability Present and Future

A cou­ple of weeks ago, I unex­pect­ed­ly had time to pick up gro­ceries here in Capi­tol Hill. The only prob­lem was that I had to briefly turn my back on my unlocked bike to do it.

My bike, a vintage deathtrap with lots of chrome

Though I hadn’t asked for help, a moth­er wran­gling sev­er­al chil­dren pressed her old­est into ser­vice guard­ing the bike. He was talk­a­tive and polite, prob­a­bly about eleven, and def­i­nite­ly a lit­tle unusu­al. As he struck up a con­ver­sa­tion with me about how I looked like a char­ac­ter from an obscure show, I became increas­ing­ly sure I had met an autis­tic child. I checked out, thanked him, and got my bike back. Before I could say any­thing to his moth­er, the fam­i­ly was gone. I rode away grin­ning.

The boy seemed alright. He was engaged with the world around him, looked rea­son­ably hap­py, and was clear­ly con­fi­dent enough to share his inter­ests with oth­er peo­ple, even strangers. The rea­son I smile when­ev­er I see an autis­tic child, real­ly any child with a dis­abil­i­ty, doing well is that I am Autis­tic, myself. I was born just after the pas­sage of the ADA, and I rep­re­sent one pos­si­ble future for kids like the bike guard.

Some chil­dren like him will grow up to need a lot of help. Some will need very lit­tle. All of them can have rich, worth­while adult lives under the right con­di­tions. At almost 24, some may go up to Wash­ing­ton for quin­tes­sen­tial­ly ambi­tious-twen­ty-some­thing intern­ships like I have this sum­mer. By the time they do, I hope that is so nor­mal and vis­i­ble that it stops being an inter­est­ing sto­ry even out­side of dis­abil­i­ty cir­cles.

I also want him to have liv­able options if he grows up to need more help than I do. I don’t take the priv­i­lege of being able to take this intern­ship, some­thing I want­ed to do that hap­pens to be a few hun­dred miles from my fam­i­ly of ori­gin, for grant­ed. That option is not avail­able to most of the dis­abil­i­ty com­mu­ni­ty, either because sup­ports are inad­e­quate to meet the individual’s needs or because there are per­fect­ly ade­quate sup­ports but oth­er peo­ple refuse to let the indi­vid­ual try, take risks, and maybe fail.

That said, there are peo­ple who need more assis­tance than I do with dai­ly liv­ing who are accom­mo­dat­ed and free to go about their lives: non-dis­abled peo­ple, peo­ple who have no dis­abil­i­ty label. For instance, hard­ly any non-dis­abled peo­ple these days would feel as com­fort­able as I do chang­ing a set of spark plugs, but most non-dis­abled, Amer­i­can adults dri­ve cars. How does it work? Ser­vices exist. Mech­a­nisms for fund­ing the ser­vices exist. These peo­ple get by. Their need for help and the help they receive are not stig­ma­tized. Why should things be any dif­fer­ent for peo­ple with labels? It doesn’t have to be, and this blog is about how we build some­thing bet­ter.

I hate talk­ing about, and could nev­er speak for, any over­ar­ch­ing dis­abil­i­ty com­mu­ni­ty. The truth is that there are a lot of dis­abil­i­ty com­mu­ni­ties with dif­fer­ent needs and con­cerns. Some­times pri­or­i­ties and orga­niz­ing over­lap, align, and uni­fy, some­times not. The one thing I feel fair­ly com­fort­able say­ing almost all of us want is own­er­ship of our own lives, futures of our own, the kind of self-deter­mi­na­tion I have where no one stops me from pur­su­ing a tough course of study like law or spend­ing a week­end with a friend in New York City. This blog is going to be about spread­ing self-deter­mi­na­tion so that dis­abled adults have dig­ni­ty and chil­dren with dis­abil­i­ties can look for­ward to the kinds of long, rich, inter­est­ing lives that peo­ple with­out dis­abil­i­ties wouldn’t be opposed to hav­ing. If we have these con­ver­sa­tions and inten­tion­al­ly sup­port self-deter­mi­na­tion, the boy who guard­ed my bike will keep doing fine. By the time he is my age, an ambi­tious, dis­abled adult trav­el­ing alone in a strange city may be a sto­ry that feels less sur­pris­ing to hear, and he will be able to do what­ev­er his tal­ents and work eth­ic allow, dis­abil­i­ty and all.

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