Autistic Future

Becoming Invisible

Note: this is much more per­son­al and con­fes­sion­al than the con­tent of this blog usu­al­ly is. Read on if you are okay with that. Oth­er­wise, check back lat­er.

Some­times, I wor­ry that I might be becom­ing invis­i­ble. I moved back to the town where I grew up, to the state where half my fam­i­ly has been for four­teen or fif­teen gen­er­a­tions, and bought a lit­tle house. I dri­ve one of the big SUVs that are ubiq­ui­tous across the sun­belt. I take good care of it as best I can afford and change its oil in my dri­ve­way every 3,000 miles. I vote. I go to church. I do a lit­tle wood­work­ing. I have the same kind of block-head­ed mutt as many of my neigh­bors. I join things like com­mu­ni­ty bands. Indeed, if I was­n’t a bit unusu­al in terms of gen­der pre­sen­ta­tion, I might be con­sid­ered very old-fash­ioned. I’m no one’s men­tal image of an Autis­tic adult. I have crushed every stereo­type, blown the odds out of the water, and become con­cerned that big parts of who I am will sim­ply van­ish.


 
Ask most peo­ple to pic­ture an Autis­tic adult and they will imag­ine some­one iso­lat­ed and unem­ployed, not some­one who can’t stop whin­ing about an I‑40 com­mute. They envi­sion some­one liv­ing with fam­i­ly or in some­what restric­tive sup­port­ed hous­ing rather than a first-time home­own­er try­ing to get new vent cov­ers before a pos­sum takes up res­i­dence in the crawl­space. Any num­ber of peo­ple I rou­tine­ly inter­act with now don’t know and don’t have occa­sion to find out. By any mea­sure, I’m well-inte­grat­ed, the best case sce­nario. Does this mean I will fade into the gen­er­al pop­u­la­tion and dis­ap­pear?

Becom­ing, and help­ing oth­ers to become, free and inde­pen­dent was the goal of every­thing I have done up until this point. I fed my ado­les­cence and young adult­hood to the cause of self-deter­mi­na­tion. Now, I have those things for myself. No one is in a posi­tion to stop me from going as far as my abil­i­ties and work eth­ic will take me, and no one can pre­vent the occa­sion­al cheese­burg­er and beer scat­tered in among my most­ly respon­si­ble deci­sions. This is the kind of life that should be avail­able to every­one. It should not be an unusu­al­ly good out­come for Autis­tic adults.

Unfor­tu­nate­ly, it is. My days are filled with reminders that what I have is unchart­ed ter­ri­to­ry for many of my Autis­tic friends. Rarely does a week go by with­out a GoFundMe crop­ping up in my Face­book feed because a friend or acquain­tance needs mon­ey to cov­er an emer­gency, or, worse rou­tine liv­ing expens­es. Peo­ple I respect as much as much as any­one else in the world tell me about the indig­ni­ties of get­ting ben­e­fits, how they are shamed dur­ing the appli­ca­tion process even when they unequiv­o­cal­ly meet the cri­te­ria and need the help. It’s hard to put­ter around in my yard, cook a meal with expen­sive, fresh pro­duce, or trawl Craigslist for fun cars I might just be able to afford in a few more years with­out a sense of dis­so­nance and lin­ger­ing guilt.

I donate what I can, but the wider, neu­rotyp­i­cal soci­ety would con­sid­er my means fair­ly mod­est. When I am able to help, the anger I feel while I enter my cred­it card infor­ma­tion is vis­cer­al. I can feel mus­cle tens­ing and heart rate ris­ing as I add duct tape to a social safe­ty net that needs an over­haul. I lis­ten when I can, but my emo­tion­al resources have lim­its, too. Some­times, I want to spend my spare lim­it­ed time and mon­ey on light­heart­ed pur­suits. The ques­tion of how much fun it is okay for me to have while friends strug­gle to cov­er the neces­si­ties is one that defies an easy answer. I sus­pect I will grap­ple with it until such time as more of the Autis­tic com­mu­ni­ty has a dig­ni­fied lifestyle or until the end of my life, whichev­er comes first.

I social­ize more with neu­rotyp­i­cals than in the past because the life I have now brings me into con­tact with them. I enjoy these new friends, but these rela­tion­ships present their own prob­lems. My dis­abil­i­ty rarely comes up in con­ver­sa­tion. Unless some­one has occa­sion to Google me, new friends may not find out about an impor­tant piece of my back­ground and large swathes of my social life. Even peo­ple who know I’m Autis­tic, or would be com­plete­ly sup­port­ive if they did, are most­ly not in a posi­tion to under­stand my oth­er world. Sub­ject mat­ter that is enough a part of dai­ly life to come up in casu­al con­ver­sa­tion among my Autis­tic friends, with their high pover­ty rate, might be con­sid­ered too sad or dis­turb­ing to men­tion around neu­rotyp­i­cal ones.

I don’t know what to do about any of this except try to be vis­i­ble, give what I can, keep work­ing toward a world where few­er of us live in pover­ty, and engage in con­ver­sa­tion about the oblig­a­tion of those of us who are doing alright to every­one else. The size of that con­ver­sa­tion will cer­tain­ly grow as access to jobs and edu­ca­tion con­tin­ue to increase. If we are suf­fi­cient­ly suc­cess­ful, what I have will be more nor­mal in my life­time. These ques­tions will large­ly expire. Until then, I will do my best to put down roots with­out becom­ing invis­i­ble, to be both Autis­tic and a val­ued part of the cir­cles I run in now. I will think about how I can use what I own to dis­play both with pride. I will set finan­cial goals for giv­ing as well as things like retire­ment. I will keep in touch with oth­ers ask­ing in the same ques­tions in hopes that we can find some liv­able answers, if only slow­ly, in liv­ing.

 

Are You Helping

These are fright­en­ing times for Amer­i­cans who val­ue things like human rights and the rule of law. Much that is going on in the news is par­tic­u­lar­ly dis­turb­ing to the dis­abil­i­ty com­mu­ni­ty, includ­ing Autis­tic peo­ple. Many of us, espe­cial­ly those who have advo­ca­cy expe­ri­ence from the Neu­ro­di­ver­si­ty Move­ment, want to see what we can do to help. Most of us need to prac­tice good self-care to feel our best in a cli­mate which feels increas­ing­ly threat­en­ing to most mem­bers of minor­i­ty groups.* Many of us feel both impuls­es strong­ly and simul­ta­ne­ous­ly, but activism or advo­ca­cy and self-care aren’t the same thing. Often, a giv­en course of action will serve only one of those impor­tant ends. It is impor­tant to eval­u­ate which one wants to do in a giv­en moment and make deci­sions that will accom­plish the goal in ques­tion.

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The Crucial Question

The world of dis­abil­i­ty spends a lot of its time argu­ing about seman­tics. This has been par­tic­u­lar­ly true of the Autis­tic com­mu­ni­ty, some­times to an unpro­duc­tive degree, though it seems to have been less of a prob­lem recent­ly as oth­er events and con­cerns have occu­pied our atten­tion. Peo­ple who say the wrong words some­times still mean the right things. They still want self-deter­mi­na­tion for dis­abled peo­ple. Peo­ple who use the right words don’t always do what we would wish. ‘Neu­ro­di­ver­si­ty’ seems to be slapped on every­thing these days, regard­less of whether or not that thing is in keep­ing with the prin­ci­ples which came with the term in its more con­tro­ver­sial days. Seman­tics are a fair­ly weak pre­dic­tor of how a giv­en per­son or orga­ni­za­tion will think or act. How­ev­er, there is one seman­tic tell which remains very good at unveil­ing atti­tudes.

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April the Opportunity

Every year, toward the end of March, the Autis­tic com­mu­ni­ty braces itself for April. Peo­ple who sub­scribe to the neu­ro­di­ver­si­ty par­a­digm don’t enjoy the usu­al cav­al­cade of inspi­ra­tion porn, offen­sive fundrais­ing tac­tics, pho­tos, videos, and writ­ten sto­ry­telling vio­lat­ing the pri­va­cy of un-con­sent­ing chil­dren and adults, and requests to do the fre­quent­ly unpaid and demean­ing work of speak­ing to crowds of neu­rotyp­i­cals and some­times answer­ing very per­son­al ques­tions.

For those of us who have done this advo­ca­cy for a while, April some­times feels like a reprise of the time before pay­ing lip ser­vice to neu­ro­di­ver­si­ty had become some­what fash­ion­able even among peo­ple who don’t real­ly live out what it means. Those of us who live in the south­east­ern Unit­ed States tend to analo­gize April aware­ness efforts to the thick pine pollen that turns near­ly every­thing out­doors yel­low, and makes near­ly every­one sick, around the same time. It’s an unpleas­ant but inevitable part of spring.

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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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