Autistic Future

Disability Day of Mourning 2019

Dis­abil­i­ty Day of Mourn­ing is here again, and fil­i­cides con­tin­ue. Again, we remem­ber peo­ple we’ve lost and hope for a year when no names are added to the list. Again, we remem­ber the dead who may not have many out­side of the dis­abil­i­ty com­mu­ni­ty to look back on them fond­ly. Again, we reflect on the many good years they lost. Most of them were very young. Again, we con­sid­er what we, the liv­ing, lost by their deaths. The ones we lost were most­ly chil­dren who might have grown up to engage with the dis­abil­i­ty com­mu­ni­ty. Now, we will nev­er know them.

We, the liv­ing, also lose by fear, by stress, by the pres­sure these killings and oth­er man­i­fes­ta­tions of ableism put on us to con­stant­ly prove our full human­i­ty and jus­ti­fy the val­ue of our lives. Fil­i­cide, and the way in which apol­o­gists for it come out of the wood­work to jus­ti­fy it when it takes place, is, after all, just an extreme iter­a­tion of the back­ground ableism that exists in soci­ety every day. The shad­ow of these killings, the stig­ma placed on need­ing help or own­ing up to dis­abil­i­ty, being per­ceived as a bur­den, and poten­tial exclu­sion from every­thing from social belong­ing to ade­quate health­care dri­ve too many peo­ple with dis­abil­i­ties to con­stant­ly try to prove their util­i­ty in all aspects of their lives. Instead of stay­ing in the work­place, where that kind of think­ing may belong, many try to be con­stant­ly use­ful every­where, at all times, to the detri­ment of their health and rela­tion­ships. This pres­sure cuts across the lines of degree of sup­port needs, class, race, gen­der and gen­der iden­ti­ty, sex­u­al ori­en­ta­tion, and reli­gion to trou­ble much of the dis­abil­i­ty com­mu­ni­ty.

It will only leave us, and fil­i­cides will only stop, when we rec­og­nize the intrin­sic val­ue of every human being and make our com­mu­ni­ties tru­ly inclu­sive. Only then will vul­ner­a­ble peo­ple con­sis­tent­ly have the kinds of rela­tion­ships that will lead some­one to step in if some­thing looks amiss with a care­giv­er and every oppor­tu­ni­ty to be heard and believed when they need to report abuse. We can help the most vul­ner­a­ble peo­ple resist this kind of sense­less vio­lence, but we have to care about them and pri­or­i­tize them in the way we only will when we val­ue their lives equal­ly with all oth­er human lives first. If we want fil­i­cide to stop, we have to decide once and for all that there is more to life than being con­ven­tion­al­ly use­ful.

Mutual Support

The word ‘neu­ro­di­ver­si­ty’ has come a long way. What start­ed as a fringe term has gone main­stream. What was a sig­ni­fi­er of rad­i­cal ideas has become a buzz­word. The word, and many of the con­cepts that sur­round it, are get­ting watered down by peo­ple who use it with­out mean­ing what it used to mean: a fierce, unyield­ing com­mit­ment to the idea that every­one gets cer­tain things: equal­i­ty under law, dig­ni­ty of risk, self-deter­mi­na­tion, and real oppor­tu­ni­ties to build a life worth liv­ing. It meant build­ing rich, diverse coali­tions with many dif­fer­ent peo­ple to meet our community’s needs but nev­er rely­ing on any­one who won’t agree to our full human­i­ty as a basic ground rule of work­ing togeth­er. One of the upsides of our grow­ing vis­i­bil­i­ty is a con­stant flow of new peo­ple into the com­mu­ni­ty. With the def­i­n­i­tion of some of the words many of us used to state our col­lec­tive iden­ti­ty loos­en­ing, we need to talk more about the things at the heart of Autis­tic cul­ture and com­mu­ni­ty so that new peo­ple find out what it all means. One such con­cept, one we real­ly can’t afford to lose, is mutu­al sup­port.

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What Tumblr Was

Cor­rec­tion: A quote from an arti­cle by Julia Bas­com was orig­i­nal­ly mis­atributed to non­sense­wake­supthe­brain­cellz, the Tum­blr user who quot­ed it.

Tum­blr, the quirky, con­tro­ver­sial, noto­ri­ous­ly unprof­itable social media plat­form, may final­ly dis­ap­pear. Verizon’s deci­sion to clear the site of adult con­tent has gone over bad­ly with users, in part because Tum­blr has always housed sig­nif­i­cant amounts of adult con­tent, in part because hap­haz­ard enforce­ment of the new rule has affect­ed SFW blogs. A sig­nif­i­cant num­ber of users have already decid­ed to leave. It is pos­si­ble, though by no means cer­tain, that Tum­blr could sur­vive with­out peo­ple who use Tum­blr as a source of adult con­tent, but many believe the depar­ture of fan­doms is a fatal blow to the social net­work. Users are back­ing up their con­tent and gath­er­ing oth­er con­tact infor­ma­tion for their friends, even if they intend to main­tain their accounts if pos­si­ble, because of wide­spread pre­dic­tions of Tumblr’s demise.

Since Ver­i­zon announced the new rule, peo­ple who have used, loved, and hat­ed Tum­blr have been eulo­giz­ing it. In the com­men­tary on the social net­work, its past, and its like­ly-lim­it­ed future, autism comes up as a theme among crit­ics and mourn­ers alike. Some of the tweets are by peo­ple who have iden­ti­fied them­selves as Autis­tic:

 

 


A Twitter user self-described as 'Lilo the autistic queer (they/them)' with the handle @A_Silent_Child said "To everyone fleeing Tumblr: welcome to our humble abode. Would you like some tea? Cookies? Please, make yourself at home.' A user self-described as 'AutisticGamerChick' with the handle @ChickAutistic said "I moved from Tumblr to here. I don't know if that's an improvement." A user self-described as 'was @AsexualConnor' with the handle @AutisticConnors said "I'm mostly worried abt tumblr accidentally deleting my blog or tumblr itself going under after all this mess tbh". These statements were all tweeted on December 4th, 2018.

Twit­ter users who iden­ti­fy them­selves as Autis­tic dis­cuss the mass-pull­out 


 

 

Oth­ers are ableist and undig­ni­fied uses of autism as an insult:

 

 


A user self-described as 'Mike Schonewolf' with the handle @TheLoneMaverick tweeted "Tumblr really has become an autistic playpen." on December 4th, 2018.

Like Tum­blr mourn­ers, the social network’s detrac­tors asso­ciate it with autism


 

 

 

 

 

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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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