Autistic Future

On Requests

Autis­tic adults will­ing to dis­cuss autism in pub­lic or work on autism issues get many requests for help and advice. There is noth­ing inher­ent­ly wrong with ask­ing peo­ple for help, but the type and amount of these requests can get grat­ing over time. Neu­rotyp­i­cals who want respect­ful, mutu­al­ly agree­able, pro­duc­tive rela­tion­ships with Autis­tic advo­cates and activists, and want to max­i­mize the num­ber of their requests that are grant­ed, need to learn to make them in the right way. Most of the con­flicts that come out of these requests could be avoid­ed if neu­rotyp­i­cals could apply the Gold­en Rule to Autis­tic adults, extend a lit­tle empa­thy, and refrain from treat­ing Autis­tic adults in ways they, them­selves, would like­ly find obnox­ious. That plus a very basic lev­el of cul­tur­al com­pe­ten­cy would pre­vent almost all such prob­lems. Since a num­ber of neu­rotyp­i­cals are find­ing it chal­leng­ing to do those things, here are some guide­lines:

The most basic way to avoid annoy­ing or offend­ing some­one with a request for help or advice is to pre­sume Autis­tic adults’ per­son­hood and act accord­ing to the Gold­en Rule. Assume that peo­ple have full, rich lives and that their time is valu­able. Don’t assume that a dis­abled per­son does­n’t work or that a per­son who does­n’t work a tra­di­tion­al, full-time job isn’t busy and active in var­i­ous pur­suits. Under­stand that ful­fill­ing your request, should the Autis­tic adult choose to do it, will take time. This is a real cost. If you can answer a ques­tion through Google, it might be more respect­ful to do that than ask for some­one’s time, espe­cial­ly if that per­son is some­one you don’t know well. Nev­er ask an Autis­tic or oth­er dis­abled per­son to work for free when you would expect to pay a neu­rotyp­i­cal to get the job done. This insults the dis­abled per­son by devalu­ing their work and per­pet­u­ates pover­ty in the dis­abil­i­ty com­mu­ni­ty. Peo­ple will prob­a­bly, under­stand­ably, respond to requests of this kind with out­rage. Ask­ing peo­ple with dis­abil­i­ties to vol­un­teer when any­one in the role in ques­tion would be a vol­un­teer is fine.

Con­sid­er, too, whether your request is cost­ly or offen­sive by nature. If you are con­sid­er­ing ask­ing a ques­tion, first ask your­self whether you would be com­fort­able answer­ing it giv­en the sur­round­ing con­text and degree of rela­tion­ship. Ask­ing an Autis­tic stranger about the details of their med­ical or sex­u­al his­to­ry is no more like­ly to go over well than ask­ing those sorts of ques­tions of a neu­rotyp­i­cal you don’t know well. Be care­ful about how you ask about the painful moments of peo­ple’s per­son­al his­to­ries, too. Con­sid­er the cost of hav­ing to repeat the sto­ry of the worst moments of your life over and over. Is the rea­son for your request worth ask­ing anoth­er per­son to do that? Nav­i­gat­ing these sit­u­a­tions will be eas­i­er to get this right if you rec­og­nize Autis­tic adults as peo­ple who are fun­da­men­tal­ly like your­self in many ways.

Cul­tur­al com­pe­tence and research on indi­vid­u­als will also help you avoid offend­ing the peo­ple you hope will help you. Do you want some­thing from some­one who iden­ti­fies with the Neu­ro­di­ver­si­ty Move­ment? Approach­ing them with the phrase “per­son with autism” and ask­ing for help with an autism aware­ness month event will prob­a­bly not go over well. Learn­ing the Autis­tic com­mu­ni­ty’s major­i­ty con­sen­sus on basic issues, and some­thing about the pref­er­ences and val­ues of the indi­vid­ual you plan to ask for help, will usu­al­ly give you an under­stand­ing of which requests are like­ly to be accept­ed and which ones just invite anger. Peo­ple will not help you if your requests don’t align with their inter­ests, knowl­edge, or pri­or­i­ties. Ask­ing some­one to help with a project that is dia­met­ri­cal­ly opposed to their val­ues will usu­al­ly be con­sid­ered annoy­ing at best, deeply offen­sive at worst. If you know so lit­tle about the per­son you are ask­ing that you have no idea how your request will land, you may want to do more research before you pose the ques­tion.

For all their sup­posed empa­thy and good social skills, too many neu­rotyp­i­cals have dif­fi­cul­ty apply­ing those things to their inter­ac­tions with Autis­tic peo­ple. Remem­ber­ing that Autis­tics are peo­ple, with all the com­plex­i­ty that entails, will go a long way toward solv­ing the prob­lem. Insult­ing the Autis­tic adults with whom you inter­act is an inher­ent­ly obnox­ious thing to do, and it isn’t pro­duc­tive. It will nev­er help you get what you want. If this is seems con­fus­ing or too hard to do, there may be work you need to do on your­self before you can inter­act with the Autis­tic com­mu­ni­ty suc­cess­ful­ly.

What Neurodiversity Is

Straw man argu­ments against neu­ro­di­ver­si­ty are back in style like some ter­ri­ble ’90s fash­ion trend returned from the thrift store sale bins. Once again, some peo­ple are try­ing to tell the “hard truth” that neu­ro­di­ver­si­ty does­n’t and can’t work. It isn’t clear which of these indi­vid­u­als real­ly believe what they say and who is just tak­ing an “edgy” brand­ing tack, but what is obvi­ous is that they aren’t engag­ing in the kind of good faith debate that makes ideas stronger through the pres­sure and account­abil­i­ty of an oppos­ing point of view. They’re set­ting up straw men, mis­rep­re­sent­ing what neu­ro­di­ver­si­ty is and knock­ing it down. This is a prob­lem for any­one who iden­ti­fies with the ideals of the Neu­ro­di­ver­si­ty Move­ment because peo­ple who are new to autism, dis­abil­i­ty, or neu­ro­di­ver­si­ty issues may not buy into its agen­da if their first encounter with what it osten­si­bly means is one of these straw man expla­na­tions. Pro­po­nents of neu­ro­di­ver­si­ty have pushed back, but so much of that con­ver­sa­tion is inevitably about what neu­ro­di­ver­si­ty isn’t. While stand­ing up to peo­ple who mis­rep­re­sent neu­ro­di­ver­si­ty is impor­tant, we can’t expect any­one to buy into what our ide­ol­o­gy isn’t. It’s also impor­tant to reit­er­ate what neu­ro­di­ver­si­ty actu­al­ly means.

Neu­ro­di­ver­si­ty starts by assum­ing that liv­ing human beings are per­sons. Every­one gets the same basic rights. Every­one can be assumed to have the range of human needs and desires, for things like belong­ing and auton­o­my, that are prac­ti­cal­ly uni­ver­sal unless the indi­vid­ual in ques­tion specif­i­cal­ly says oth­er­wise. There are no excep­tions for label, IQ, or degree of sup­port needs. It moves on prag­mat­i­cal­ly from there. For the time being, there is no “cure” for most neu­ro­log­i­cal dif­fer­ences that are far enough from the norm to be char­ac­ter­ized as dis­abil­i­ties. Some Autis­tics, oth­er dis­abled peo­ple, par­ents, sib­lings, care­givers, and pro­fes­sion­als are hap­py that there isn’t a way to pre­vent most neu­ro­log­i­cal dif­fer­ences or nor­mal­ize most neu­ro­di­ver­gent peo­ple. Oth­ers aren’t. The aver­age neu­ro­di­ver­si­ty pro­po­nent is opposed to a cure and wor­ried about soci­ety’s eugenic ten­den­cies, but hav­ing a spe­cif­ic sense of what an ide­al world would look like isn’t nec­es­sar­i­ly a pre­req­ui­site for find­ing neu­ro­di­ver­si­ty use­ful. The cru­cial thing is accept­ing that peo­ple are peo­ple, and, love it, hate it, or feel ambiva­lent about it, there is no cure today.

Make the val­ue judge­ment that we should err on the side of treat­ing every human being as a per­son, accept the fact that med­i­cine does­n’t have an answer to neu­ro­log­i­cal vari­ety, and ques­tions about how to help peo­ple with sig­nif­i­cant sup­port needs exer­cise their rights and get the things prac­ti­cal­ly every­one wants inevitably feel urgent. Neu­ro­di­ver­si­ty isn’t an idea whose use­ful­ness is lim­it­ed to peo­ple who are “high func­tion­ing” or “just quirky” because it inher­ent­ly looks at peo­ple who will have exten­sive, expen­sive sup­port needs for the fore­see­able future and asks how we can help these peo­ple build the best pos­si­ble lives for them­selves. Neu­ro­di­ver­si­ty looks to every idea, tool, and prac­ti­cal solu­tion it can lay hands on to answer the ques­tion of how to have a good life with an IQ of 30, exec­u­tive func­tion­ing dif­fi­cul­ties, schiz­o­phre­nia, no ver­bal speech, or all of the above. Where med­i­cine is stumped, and the peo­ple affect­ed may not even want a “cure,” neu­ro­di­ver­si­ty draws heav­i­ly on the social mod­el of dis­abil­i­ty to offer some­thing unique: hope.

Start ask­ing ques­tions about how to help peo­ple with sig­nif­i­cant dis­abil­i­ties who are alive today live well and it becomes hard to watch a dis­pro­por­tion­ate share of the research dol­lars going to med­ical mod­el solu­tions while the sup­ports that make for good lives are under­fund­ed. Spend­ing mil­lions of dol­lars try­ing to fig­ure out how to nor­mal­ize dis­abled peo­ple starts to seem sil­ly as soon as one gets to know some peo­ple with extreme­ly sig­nif­i­cant sup­port needs and ade­quate sup­ports. Meet­ing some­one whose sup­port needs and day-to-day qual­i­ty of life both exceed one’s own demon­strates that the idea that degree of impair­ment deter­mines qual­i­ty of life is just an ableist assump­tion. Meet some­one whose qual­i­ty of life is mis­er­able because ade­quate sup­ports aren’t avail­able, and the present bal­ance of research fund­ing starts to feel like a moral out­rage.

Neu­ro­di­ver­si­ty isn’t a feel-good con­cept for suc­cess­ful peo­ple who are “a lit­tle dif­fer­ent” but doing fine. It’s the courage to enter­tain the idea that peo­ple with sig­nif­i­cant dis­abil­i­ties can have lives worth liv­ing and embrace that idea’s excru­ci­at­ing impli­ca­tions for what lives wast­ed by fil­i­cide, insti­tu­tion­al­iza­tion, oth­er forms of seg­re­gat­ed, con­gre­gate set­tings, and even low expec­ta­tions and learned help­less­ness in the com­mu­ni­ty might have been. It’s liv­ing with the knowl­edge that human lives are being wast­ed that way now. Neu­ro­di­ver­si­ty is an idea for strong peo­ple, as it bites and claws at every­one who embraces it. There is no way to imag­ine a bet­ter world with­out con­fronting how bad things are and have been. The ensu­ing sense of out­rage rou­tine­ly changes the course of peo­ple’s lives.

For many of neu­ro­di­ver­si­ty’s con­ven­tion­al­ly suc­cess­ful, Autis­tic adher­ents, it brings about a com­mit­ment to help­ing fel­low Autis­tics achieve joy­ful, use­ful, self-direct­ed, inter­est­ing lives and expe­ri­ence the same rich vari­ety of options avail­able to nondis­abled peo­ple. Neu­ro­di­ver­si­ty’s end goal is good lives in all the infi­nite vari­ety of what that means. It isn’t an easy self-esteem boost or an affin­i­ty club for edu­cat­ed pro­fes­sion­als who are “just quirky.” It’s a robust sup­port­ed deci­sion-mak­ing agree­ment, Autis­tic friends with com­pli­men­ta­ry strengths and weak­ness­es help­ing each oth­er, a per­son with ID demand­ing a home that pass­es the bur­ri­to test, fund­ing for more and bet­ter AAC, com­pre­hen­sive and acces­si­ble sex edu­ca­tion, sup­port staff who facil­i­tate peo­ple with I/DD main­tain­ing mean­ing­ful rela­tion­ships over time and dis­tance, an Autis­tic pride stick­er on a sports car, an SLP who helps rude teenagers learn how to cuss. Neu­ro­di­ver­si­ty is insist­ing that peo­ple with dis­abil­i­ties affect­ing the mind deserve more than the dull, small lives they have been giv­en in the past, that a lifestyle no one with real options would ever accept isn’t good enough for any­one. It’s accept­ing the hard real­i­ty that none of us will ever be secure in our free­dom or safe­ty until the most vul­ner­a­ble mem­bers of soci­ety are, too.

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.