AUTISTIC FUTURE: A FUTURE OF OUR OWN

More Than What We Oppose

April has nev­er been my favorite month in the Autis­tic com­mu­ni­ty. I go through the motions as best I can because engag­ing in the rit­u­als is part of belong­ing. This year, con­cerned about vis­i­bil­i­ty, I went as far as mak­ing a ban­ner to hang on my front stoop and buy­ing the most out­ra­geous­ly fun Autis­tic pride stick­er* I could find for my car. Still, I remain skep­ti­cal of how we do April. The reclaimed con­cept of an accep­tance month is cer­tain­ly an improve­ment on #AutismAware­ness, but it doesn’t come close to what it could, and should, become. Even in our alter­na­tive April activ­i­ties, the month fails to live up to what it should be. It will con­tin­ue to do so unless we change our approach.

The real­i­ty of the sit­u­a­tion is that April was brand­ed Autism Accep­tance Month sole­ly because it was Autism Aware­ness Month first. Med­ical mod­el orga­ni­za­tions lit things up blue and described the Autis­tic exis­tence as a tragedy and a bur­den, an inher­ent obsta­cle to full human flour­ish­ing. For obvi­ous rea­sons, Autis­tic adults found this both offen­sive and threat­en­ing. It offend­ed us because it deval­ued the good lives many of us live. It threat­ened us because any nar­ra­tive that sug­gests lives like ours are not worth liv­ing moves peo­ple to try to pre­vent lives like ours. If enough of main­stream soci­ety accepts that nar­ra­tive, the day may well come when there are no more lives like ours. Promi­nent state­ments about aware­ness in pub­lic places and on social media made #Aware­ness impos­si­ble to escape and April exhaust­ing and dispir­it­ing for many Autis­tic adults.

For those rea­sons, we tried to push back. This was, and is, right and nec­es­sary as part of the strug­gle for con­trol of the nar­ra­tive that is our strug­gle for peo­ple like us con­tin­u­ing to exist in the long run, our col­lec­tive sense of self-respect, and many indi­vid­ual Autis­tics’ abil­i­ty to cope. As long as April is asso­ci­at­ed with an uptick in anti-Autis­tic ableism, we will have to respond to it in our com­mu­ni­ca­tions with the wider soci­ety. Inter­nal­ly, though, respond­ing to out­side ableism isn’t enough. Oppos­ing ableism and the med­ical model’s pro­posed answer to the “prob­lem” of Autis­tic peo­ple is nec­es­sary but not suf­fi­cient for our community’s long-term sur­vival. We also need a nar­ra­tive that draws peo­ple in. If our com­mu­ni­ty is to last for gen­er­a­tions to come, it has to be an appeal­ing group to join. It must come with a sense of pride, sup­port, and shared expe­ri­ence. A com­mon threat is not a healthy, desir­able, or durable long-term iden­ti­ty.

The crux of my prob­lem with April is that we spend it respond­ing to ableism not just when we face the rest of the world but among our­selves. We miss the oppor­tu­ni­ty to cel­e­brate who we are. I don’t have a coher­ent plan for mak­ing next April more enjoy­able and pro­duc­tive with­in our com­mu­ni­ty, but col­or­ful ban­ners and Autis­tic pride swag seem like part of the solu­tion. So, too are rev­el­ing in memes, jokes, writ­ing, and art, break­ing bread togeth­er, get­ting ready for Autreat, and men­tor­ing new­er activists. We can’t sus­tain pro­tect­ing our com­mu­ni­ty unless we have some­thing worth pro­tect­ing, some­thing warm, human, and real, at its heart. In April, we still tend to fall into talk­ing more about what we oppose than who we are, what we want the world to be. That can­not con­tin­ue. We deserve, and need, some­thing bet­ter: an April that is more about us.

*This is not an affil­i­ate link. I just love it.

Inspiration Porn and Achievement

Despite woe­ful­ly inad­e­quate sup­ports for those who need them, dis­crim­i­na­tion, low expec­ta­tions, and oth­er atti­tu­di­nal bar­ri­ers, grow­ing num­bers of Autis­tic peo­ple are becom­ing con­ven­tion­al­ly suc­cess­ful. This can take many forms, includ­ing edu­ca­tion­al achieve­ment, finan­cial suc­cess, build­ing a val­ued and valu­able career, attain­ing elect­ed office, home own­er­ship, and tak­ing on respect­ed reli­gious and com­mu­ni­ty roles. For many Autis­tic adults, it hap­pens qui­et­ly. Some­times, how­ev­er, the neu­rotyp­i­cal world takes notice. Efforts of many dis­abil­i­ty com­mu­ni­ties to push back against inspi­ra­tion porn and pro­mote media nar­ra­tives that rec­og­nize and acknowl­edge the full human­i­ty of dis­abled peo­ple have helped but not com­plete­ly fixed the sit­u­a­tion. Although the prob­lem is unlike­ly to com­plete­ly dis­ap­pear any time soon, there are some steps Autis­tic peo­ple can take to min­i­mize the risk of becom­ing inspi­ra­tion porn and reduce harm if it hap­pens, any­way. It is also imper­a­tive that the neu­ro­di­ver­si­ty-ori­ent­ed Autis­tic com­mu­ni­ty learn to sep­a­rate the sto­ry from its sub­ject.

The media atten­tion to Haley Moss’ admis­sion to the Flori­da Bar, and the sto­ry ulti­mate­ly going viral, is just the lat­est, and one of the most promi­nent, of many episodes of very real achieve­ment by Autis­tics or oth­ers with dis­abil­i­ties han­dled regret­tably by the media and pop­u­lar cul­ture. The usu­al pat­tern is that an Autis­tic adult does some­thing that is gen­uine­ly worth­while. Some­times, the activ­i­ty in ques­tion would be news­wor­thy even if per­formed by a neu­rotyp­i­cal. Some­times, it is only news­wor­thy because it is a ‘first’, a bar­ri­er bro­ken by a mem­ber of a minor­i­ty group. Some­times, it is not news­wor­thy, and its very cov­er­age is some­what patron­iz­ing. News out­lets, often start­ing with local ones, cov­er the activ­i­ty and the sub­ject of the story’s dis­abil­i­ty, but the cov­er­age is low-qual­i­ty. Actu­al achieve­ment is simul­ta­ne­ous­ly sen­sa­tion­al­ized, exag­ger­at­ed, and described in an incred­i­bly patron­iz­ing way. The sub­ject of the sto­ry is often quot­ed selec­tive­ly, with words that add dig­ni­ty and nuance cut out. The end result is some­one who has done some­thing gen­uine­ly chal­leng­ing and worth­while being cov­ered like a curios­i­ty, like a talk­ing dog. These sto­ries often go viral.

Vol­umes have been writ­ten on this issue. Many dif­fer­ent dis­abil­i­ty com­mu­ni­ties have tried hard to push back, and there have been some improve­ments. In recent years, a grow­ing num­ber of well-regard­ed media orga­ni­za­tions have put opin­ion pieces on dis­abil­i­ty in the hands of dis­abled writ­ers with excel­lent results. There are also a grow­ing num­ber of guides for jour­nal­ists cov­er­ing dis­abil­i­ty. Writ­ers, blog­gers, and jour­nal­ists who get these sto­ries right con­sis­tent­ly find that their rep­u­ta­tions pre­cede them, and dis­abil­i­ty com­mu­ni­ties trust and sup­port them more and more over time. Although the sit­u­a­tion is improv­ing, con­tact with the media remains risky for the dig­ni­ty of peo­ple with dis­abil­i­ties, espe­cial­ly when the sto­ry in ques­tion is one of achieve­ment and suc­cess. It remains impor­tant for Autis­tic peo­ple antic­i­pat­ing con­tact with the media to take basic steps to reduce the risk of end­ing up at the cen­ter of an inspi­ra­tion porn sto­ry and going viral and for the com­mu­ni­ty to avoid blam­ing the vic­tim when that does not work out.

Not all atten­tion or rep­re­sen­ta­tion is worth­while. The first step to pre­vent­ing an inspi­ra­tion porn inci­dent is to avoid, if at all pos­si­ble, becom­ing part of sto­ries that are not news­wor­thy and low­er-grade pub­li­ca­tions that may care more about going viral than pro­duc­ing real news. Some­times, the best thing to do is to turn down the inter­view, express sur­prise and con­fu­sion that the activ­i­ty in ques­tion may get press cov­er­age, and point out that it is com­mon, rou­tine, or unin­ter­est­ing. It is also impor­tant to con­sid­er the source. It is unsur­pris­ing that Forbes’ arti­cle on Haley Moss described the sig­nif­i­cance of her achieve­ment in much more nuanced, inter­est­ing, inter­sec­tion­al terms than USA Today’s. No pub­li­ca­tion is per­fect, but the ones that are more com­mit­ted to high jour­nal­is­tic stan­dards will get this right more of the time.

The for­mat is also impor­tant. At least for those who are good with words, it may be eas­i­er to get one’s full human­i­ty across in a longer-form inter­view than a short quote that will be heav­i­ly con­tex­tu­al­ized, for bet­ter or worse, by a reporter who may or may not be informed about dis­abil­i­ty, by the sur­round­ing sto­ry. If an oppor­tu­ni­ty to speak with the media does seem worth pur­su­ing, it is impor­tant to plan ahead as much as pos­si­ble. Hav­ing a basic out­line, or even a script, of what one wants to say can make it eas­i­er to stay on-mes­sage. Con­sid­er words care­ful­ly, and try to think through every sen­tence as if it could be the only one that makes it into pub­li­ca­tion.

Of course, these tac­tics are not always suf­fi­cient to pre­vent inspi­ra­tion porn, and whether to coop­er­ate with a giv­en sto­ry is always a judge­ment call. Peo­ple who are look­ing for inspi­ra­tion porn will some­times find ways to read it into the most dig­ni­fied cov­er­age of a dis­abled per­son achiev­ing some­thing worth­while. Adding con­text on social media, speak­ing out about the prob­lems with low­er-qual­i­ty cov­er­age, enter­ing into dia­logue with peo­ple who want to dis­cuss the sto­ry, and oth­er­wise try­ing to get some mod­icum of con­trol of the nar­ra­tive, as Haley Moss has on Twit­ter in recent days, all help to reduce the harm and increase the odds that a sto­ry will change per­cep­tions. Ulti­mate­ly, there are parts of the process of media cov­er­age and a story’s flow through social media net­works that are out­side of the con­trol of its sub­jects, but Autis­tic adults can exer­cise some agency before and after con­tent is cre­at­ed.

The Autis­tic com­mu­ni­ty must remem­ber that get­ting caught up in these sto­ries is often some­thing that hap­pens to peo­ple with­out being inten­tion­al­ly orches­trat­ed by them. Although pro­fes­sion­al Autis­tics are a real prob­lem, albeit one dri­ven by the community’s hor­rif­ic unem­ploy­ment rate, many or most peo­ple caught up in inspi­ra­tion porn sto­ries are vic­tims, rather than per­pe­tra­tors, of indig­ni­ties on them­selves and oth­er dis­abled peo­ple. The Autis­tic com­mu­ni­ty can be unfor­giv­ing to peo­ple who are per­ceived as imped­i­ments to a good nar­ra­tive. How­ev­er, it must rec­og­nize that the per­son at the cen­ter of the sto­ry is a human being who belongs in the com­mu­ni­ty, often regrets their role in the sto­ry, and is some­where between bare­ly cul­pa­ble and not at all cul­pa­ble in most cas­es, at worst hav­ing made a hand­ful of easy mis­takes. Doing some­thing worth­while, mak­ing a good faith effort toward qual­i­ty rep­re­sen­ta­tion, and get­ting bad cov­er­age despite one’s best efforts should not be grounds for exclu­sion, humil­i­a­tion, or harsh reproach. In all of these episodes, Autis­tic peo­ple must refrain from dri­ving away those who did good things only to have them cov­ered bad­ly.

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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