Autistic Future

Autistics Speaking Day 2019

Like most Autis­tic hol­i­days, Autis­tics Speak­ing Day came about because an ableist event was tak­ing place on social media. We dis­rupt­ed it. By chance, it falls at the same time of year when many cul­tures remem­ber their dead. That has me think­ing about a rel­a­tive sus­pect­ed of being Autis­tic, how far we’ve come, and where we are now. At the moment, I have grave con­cerns about what I see going on and its impli­ca­tions for our con­tin­ued progress. The same sus­pi­cion of qual­i­fi­ca­tion and exper­tise that has swept the world late­ly seems to be reach­ing us. I see grow­ing con­tempt for the peo­ple who are work­ing on the most con­crete, sub­stan­tive issues that affect how long and well Autis­tics live, and I see it led by peo­ple who show no indi­ca­tion of plan­ning to take over or step into that life­sav­ing work and fix­ing what they think is being done wrong. If they suc­cess­ful­ly under­mine the rep­u­ta­tions of peo­ple who get us seats at the tables where deci­sions are made about us, I pre­dict dire con­se­quence for the most vul­ner­a­ble Autis­tics. Lives will be harsh­er, short­er, and less than they could have been much as that rel­a­tive’s, my great-great-uncle’s, was.

He was born in 1895 on the east­ern fringes of the Car­oli­na moun­tains, where his fam­i­ly, my fam­i­ly, set­tled on what I think was Cataw­ba land around 150 years before. Wade’s par­ents were both promi­nent mem­bers of their small com­mu­ni­ty. It soon became obvi­ous that Wade had a devel­op­men­tal dis­abil­i­ty, prob­a­bly autism. As he grew up, he began to like walk­ing in the woods by him­self. That fright­ened his fam­i­ly. Pub­lic ben­e­fits for peo­ple with dis­abil­i­ties did­n’t exist in Wade’s com­mu­ni­ty at that time. Even if it occurred to them to pri­vate-pay for some sort of home care, Wade’s par­ents saw so lit­tle cash in any giv­en year that the cost of that might well have been more than their whole income. The only option they saw was the big state hos­pi­tal, so that was where Wade went. He spent the rest of his life there. I’m sure there were no more walks in the woods. I’m not sure any­one vis­it­ed him. It would have been a long, hard trip over the roads of those days for his par­ents and sib­lings.

How­ev­er, I sus­pect the rea­son Wade became a fam­i­ly secret had more to do with stig­ma and fear than ear­ly cars and unpaved switch­backs. By the time he was a young man, eugen­ics was con­sid­ered a pub­lic health best prac­tice and writ­ten into state law. Wade’s sib­lings who left the farm and the imme­di­ate­ly sur­round­ing envi­rons weren’t vis­i­bly dis­abled, but there was quirk­i­ness flow­ing through the fam­i­ly. It had­n’t nec­es­sar­i­ly mat­tered in the moun­tains, where they grew up prac­ti­cal­ly in the 18th cen­tu­ry. In the 20th, where they found them­selves as adults, this kind of nat­ur­al vari­a­tion was con­sid­ered a prob­lem to be stamped out. Being white, mid­dle class, and edu­cat­ed offered some pro­tec­tion, but it was­n’t a good time to be unusu­al or to be relat­ed by blood to any­one who was. Acknowl­edg­ing Wade might have seemed dan­ger­ous, espe­cial­ly for one of his broth­ers, my great-grand­fa­ther. An edu­ca­tor mar­ried to a nurse, it seems implau­si­ble that he was unfa­mil­iar with the con­cept, pol­i­cy, and prac­tice of eugen­ics as he watched his mid­dle son strug­gle con­spic­u­ous­ly with lit­er­a­cy dur­ing the most active years of North Car­oli­na’s eugen­ics pro­gram. My great-grand­fa­ther does­n’t come across as a laid-back father in fam­i­ly sto­ries. Did part of the inten­si­ty and per­fec­tion­ism in his par­ent­ing come from a nag­ging fear of what might hap­pen if any­one took a sec­ond look at his out­ward­ly respectable fam­i­ly? We tend toward long gen­er­a­tions, so I’ll nev­er know. My great-grand­fa­ther died just a few years before I was born at age 94.

Indeed, all of Wade’s full sib­lings who sur­vived ear­ly child­hood enjoyed long lives. They lived ful­ly, the kinds of lives that pack a funer­al ser­vice to the rafters. Mean­while, days passed for Wade with no choic­es, no hope, and no vari­ety. His life was one of thou­sands writ­ten off and thrown away because of atti­tudes toward peo­ple with dis­abil­i­ties. The con­di­tions in big insti­tu­tions at that time were bru­tal: bad food, poor or absent med­ical care, abuse, neglect. In a fam­i­ly where peo­ple who don’t make 80 are thought to have died young, Wade only got 68 years. He passed away in 1964. Maybe dein­sti­tu­tion­al­iza­tion would have ben­e­fit­ed him if he had lived a lit­tle longer, but that was­n’t how things worked out. My grand­fa­ther only learned that he had an Uncle Wade as an adult, when my great-grand­fa­ther abrupt­ly announced that he need­ed to go home for his broth­er’s funer­al. Years lat­er, my moth­er tracked down an order­ly from the hos­pi­tal who said he cared for Wade. The order­ly remem­bered him as a nice per­son. That is the sum total of what I know about Wade plus a lot of con­jec­ture and extrap­o­la­tion from his­tor­i­cal con­text. If there ever were pho­tographs of him, they don’t seem to have sur­vived. Wade, a man my moth­er should have known as a child, was more utter­ly erased than the events sur­round­ing my fam­i­ly’s mul­tira­cial her­itage that took place 200 years ago.

The only good news here is that what hap­pened to Wade isn’t nor­mal any­more. Peo­ple with I/DD have bet­ter life options than being swal­lowed up by vast, pur­ga­to­r­i­al facil­i­ties and large­ly oblit­er­at­ed from mem­o­ry. The last cen­tu­ry has been a time of remark­able change. That brings me to my con­cerns about where our com­mu­ni­ty is now. The changes that have come about required years of work by peo­ple with a diverse group of skill sets, peo­ple who could imag­ine a bet­ter world than any they had ever seen. It took protests, lit­i­ga­tion, pol­i­cy work includ­ing leg­is­la­tion, inves­tiga­tive jour­nal­ism, and the kind of self-advo­ca­cy that tells the audi­ence what it needs to hear rather than what it wants to hear. It took more than charis­mat­ic peo­ple voic­ing strong opin­ions with­out doing much else, espe­cial­ly edi­to­ri­al­iz­ing among peo­ple who large­ly agree. It took more than memes about iden­ti­ty and self-care, talk­ing friends through bad days, and rack­ing up fol­low­ers on social media. There is noth­ing wrong with any of those things. They are some­times enjoy­able or mean­ing­ful, but none of them were suf­fi­cient to make our lives bet­ter in the past. They still aren’t now. It took peo­ple with knowl­edge beyond their own sto­ries.

Things may not be as bad as they were in the ear­ly 20th cen­tu­ry, but the Autis­tic com­mu­ni­ty has a long way to go. Like Wade’s, our lifes­pans are still sta­tis­ti­cal­ly short­er than our neu­rotyp­i­cal peers’. Our rates of pover­ty and unem­ploy­ment are appalling. Autis­tic peo­ple still face dis­crim­i­na­tion in many areas of life. Too many of us are still lan­guish­ing, not unlike the way Wade did. We betray those peo­ple when we do any­thing oth­er than con­tin­u­ing to move for­ward. We betray them when we act like hav­ing opin­ions and talk­ing about them is good enough. We betray them when we under­mine the hard work that needs to be done, and the peo­ple who are lead­ing not so much a cri­tique as a rejec­tion of the wonks, nerds, and pro­fes­sion­als are guilty of that betray­al. Every­one in our com­mu­ni­ty or claim­ing to serve it should be held to account when they make mis­takes or wrong oth­ers, but peo­ple who cast vague, fac­tu­al­ly ques­tion­able asper­sions on those who are mak­ing Autis­tic peo­ple’s lives bet­ter in con­crete, iden­ti­fi­able ways are wild­ly irre­spon­si­ble. They are stand­ing in the way of the alle­vi­a­tion of suf­fer­ing and wast­ed life and the pre­ven­tion of ear­ly, need­less death.

I hate to give dire warn­ings on a hol­i­day, but this seems like an impor­tant thing to speak about. If you don’t like the way some­thing is being done, say some­thing or take it on, your­self. Don’t pro­mote blan­ket rejec­tion of the peo­ple who are doing what is nec­es­sary to reduce the num­ber of peo­ple who spend their lives lan­guish­ing and suf­fer­ing, nev­er get­ting to expe­ri­ence the full mea­sure of human life. Wade Tay­lor died before the promise of the Neu­ro­di­ver­si­ty Move­ment could be kept for him, before neu­ro­di­ver­si­ty was a word any­one used, before many peo­ple con­tem­plat­ed the pos­si­bil­i­ty that my col­lege-edu­cat­ed great-grand­fa­ther and his broth­er, Wade could share some fun­da­men­tal equal­i­ty, before he got much chance to live. Don’t be a con­tribut­ing fac­tor in that hap­pen­ing to even one more per­son. Make your­self use­ful, by join­ing the work or through cri­tique that is spe­cif­ic and mean­ing­ful, or get out of the way. We must keep mov­ing for­ward. We owe that much to liv­ing and dead alike.

Advice for Young Autistics (and Others Growing Up on the Internet)

As the U.S. moves fur­ther into an impeach­ment inquiry and anoth­er pres­i­den­tial elec­tion, as the world deals with a time of upheaval, there is advice I want to share with peo­ple grow­ing up on the inter­net. I pri­mar­i­ly address young Autis­tics, but what I have to say applies to every teen and young adult grow­ing up and com­ing of age online. This isn’t the first time I’ve writ­ten about Autis­tics’ rela­tion­ship with the inter­net. It isn’t the first time I’ve offered sug­ges­tions for peo­ple who are young or oth­er­wise new to the Autis­tic com­mu­ni­ty. It is the first time I’ve found a way to explain some­thing it took me a long time to learn, the advice I wish I’d received at the begin­ning: you need to know that the inter­net will give you what you want. Not what you need. Not what you should want. The inter­net will give you what you want. If you want to pre­dict how seri­ous engage­ment with the inter­net and social media will affect you, how safe, ben­e­fi­cial, unsafe, or detri­men­tal to you and oth­ers it will be, you have to know your­self. If you don’t think you know your­self well enough to be pret­ty cer­tain of how things will turn out, you aren’t at the right point in your life to spend sig­nif­i­cant time online.

Almost any kind of infor­ma­tion, ide­ol­o­gy, nar­ra­tive, or com­mu­ni­ty a per­son could ever want exists online. Every­thing has a Face­book group, a Red­dit thread, a forum, a week­ly Twit­ter chat. The inter­net lives to serve the peo­ple who real­ly know how to use it. It will take you where you want to go, to the peo­ple you’re look­ing for, with­out pass­ing judge­ment on the val­ue of what you’ve asked it for. It won’t hide some­thing from you that might be bad for you for you. It won’t ask you to stop and think before it ful­fills a ques­tion­able wish. It won’t cau­tion you that what you’re try­ing to find may not be con­ducive to a hap­py or moral life. It will sense your heart’s desire and act on it even if you would be hard pressed to explain what you want to a good friend, even if you would strug­gle to artic­u­late it to your­self. The inter­net is nev­er going to explain the nature of the request you’ve made and sit you down to talk over whether it’s real­ly a good idea. It will just give you what you want.

This isn’t always a bad thing. If what you’re after is con­nec­tion with like-mind­ed peo­ple, you will prob­a­bly get the per­son­al or pro­fes­sion­al con­tacts you need. If you are seek­ing knowl­edge and want to learn with an open mind, what you will find will prob­a­bly exceed your wildest dreams. You can use the inter­net to make new friends, make mon­ey, move your career for­ward by carv­ing out a rep­u­ta­tion in your field and build­ing a per­son­al brand, edu­cate and improve your­self, or work for social change. The pos­si­bil­i­ties for build­ing a bet­ter life or a bet­ter world are vir­tu­al­ly lim­it­less. If you want good things at the out­set, you will have one of the most pow­er­ful human achieve­ments of all time on your side. The inter­net could be the long enough lever and place to stand that lets you move the world.

Unfor­tu­nate­ly, it will help you just as much if the things you want are bad, either for you or for oth­ers. If what you want is cama­raderie at all costs, even if it means harm­ing oth­ers or adopt­ing unsa­vory ideals, you will prob­a­bly get that. If some part of you would like per­mis­sion to believe you’re bet­ter than oth­er peo­ple, you will find a com­mu­ni­ty and an ide­ol­o­gy that per­mits you to dehu­man­ize oth­ers. You may find your­self falling into aspie suprema­cy, reli­gious extrem­ism, misog­y­ny, or the racism, anti­semitism, and xeno­pho­bia of the alt right. If you want a scape­goat to blame and pun­ish for your prob­lems, the inter­net will find one for you. Not every­one who fol­lows those paths ends up per­pe­trat­ing some­thing like the Christchurch shoot­ing, but some peo­ple do. Many more fill up with hate and fes­ter, inflict­ing pet­ty cru­el­ties on oth­ers, fail­ing to accom­plish their goals because blam­ing some­one else makes it dif­fi­cult to take respon­si­bil­i­ty for mov­ing one’s own life for­ward. Big­ots and extrem­ists are always recruit­ing. The inter­net will con­nect you with them if you want what they have to offer. If some cor­ner of your psy­che wants to abdi­cate respon­si­bil­i­ty for your life more qui­et­ly and sink into learned help­less­ness, the inter­net will intro­duce you to peo­ple who will val­i­date that impulse and give it per­mis­sion to grow. What­ev­er your polit­i­cal and ide­o­log­i­cal lean­ings, it will give you lies and con­spir­a­cy the­o­ries if you want con­tent that sup­ports what you already think more than you want con­tent that is thought­ful and fac­tu­al­ly accu­rate.

The fun­da­men­tal law of the inter­net is that you reap what you sow. It’s a boost, an enhancer, an ampli­fi­er. Whichev­er way you’re lean­ing, it will give you a hard shove in that direc­tion. You would be wise to take a hard, hon­est look at which way you’re lean­ing before you decide to wade in and spend a sig­nif­i­cant amount of your spare time online. If you decide to get heav­i­ly engaged with the inter­net and social media at this point in your life, expect it to be a test of your char­ac­ter with real con­se­quences. If some soul-search­ing reveals that you might fail that test, or that you’re not sure you know your­self well enough to be con­fi­dent about what will hap­pen, be care­ful. Con­sid­er lim­it­ing how much space in your life the inter­net gets. This may be a good time to hold off on meet­ing new peo­ple or check­ing out new tags, threads, and forums. It may also be ben­e­fi­cial to ask some friends to keep an eye on you and hold you account­able. Mon­i­tor your­self, too. Watch for changes in your mood or behav­ior. Ask your­self about the accu­ra­cy and val­ue of the con­tent you’re con­sum­ing, whether and how it adds val­ue to your life, why you’re drawn to it, which of your needs it meets. If some­thing has a bad effect on you, drop it. There is no short­age of oth­er things to try.

Your par­ents may have dis­count­ed the impor­tance of things that hap­pen online. If you’re read­ing this, you prob­a­bly know bet­ter than that. The inter­net is just anoth­er slice of the real world these days, albeit one where the rules are dif­fer­ent, where the log­ic and norms of the rest of soci­ety some­times break down or get invert­ed. What hap­pens there has con­se­quences for you and for oth­ers. Wad­ing deep into the inter­net at the wrong point in your life could lead to mis­takes you can’t take back or shifts in your char­ac­ter and val­ues that may prove hard to reverse. Be care­ful. Use good judge­ment. Ask old­er peo­ple you trust to help and advise you along the way. Most of all, know your­self. Fig­ur­ing out who you are is one of your most impor­tant jobs right now. The answer you get will have con­se­quences for all of us, so do your best to make it a good one.

Greta Thunberg and Ableism

Gre­ta Thun­berg has been in the news late­ly. With no fac­tu­al basis for oppos­ing her ideas, her crit­ics have tak­en to attack­ing her per­son­al­ly. Adults are spend­ing their time insult­ing a teenag­er for express­ing con­cern about the over­whelm­ing sci­en­tif­ic con­sen­sus on cli­mate change. The way she is crit­i­cized is dis­turb­ing, often allud­ing to her gen­der as well as her age. Most notably, these ad hominem attacks relate to her dis­abil­i­ty or man­ner­isms prob­a­bly stem­ming from it. Some sug­gest that what she has to say should be dis­re­gard­ed because of her autism. Oth­ers say that she can­not pos­si­bly under­stand and freely choose her activism because of her dis­abil­i­ty. Both of these con­clu­sions are unsup­port­ed by evi­dence and inher­ent­ly ableist.

See­ing neu­rotyp­i­cals treat Thun­berg as an unre­li­able nar­ra­tor because of her dis­abil­i­ty does­n’t sur­prise Autis­tic adults who have fol­lowed her sto­ry. Autis­tic com­mu­ni­ca­tion is doubt­ed, what­ev­er its form. What we say is often ques­tioned, and there are too many neu­rotyp­i­cals who tend to dis­be­lieve us even when there is strong evi­dence that what we are say­ing is true. For Autis­tics who are not world famous activists, this can mean get­ting ignored when we try to express our needs or say that we are suf­fer­ing. The prob­lem is at its worst for peo­ple who are unable to pass as neu­rotyp­i­cal, have intel­lec­tu­al dis­abil­i­ties, or both. This atti­tude per­pet­u­ates abuse and neglect. It keeps our rates of sex­u­al assault much high­er than the gen­er­al pop­u­la­tion’s by let­ting preda­tors go free even when Autis­tics try to report them. It short­ens our lives when our attempts to get help with med­ical con­cerns are ignored. Thun­berg is repeat­ing the con­sen­sus of almost all sci­en­tists study­ing cli­mate change. Her autism does not affect the truth of the facts to which she directs the world’s atten­tion. To sug­gest that it does is noth­ing more than ableism.

The assump­tion that she has some­how been forced or manip­u­lat­ed into what she is say­ing is ableism, too. Evi­dence has­n’t emerged sug­gest­ing that any­one is forc­ing her cli­mate activism. While Thun­berg appears to be a ner­vous pub­lic speak­er, the only obvi­ous expla­na­tion for what she is doing is that she wants to be doing it. These kinds of rumors don’t gen­er­al­ly cir­cu­late about pub­lic fig­ures with­out dis­abil­i­ties. It is hard to imag­ine them cir­cu­lat­ing about Thun­berg if she were neu­rotyp­i­cal. Despite our gen­er­a­tions-long strug­gle for basic rights, courage and activism aren’t qual­i­ties the pub­lic asso­ciates with Autis­tics and oth­ers with dis­abil­i­ties. The accept­able nar­ra­tives for us are still being good-natured objects of pity or becom­ing “inspi­ra­tional” by “over­com­ing our dis­abil­i­ties” and “man­ag­ing to live nor­mal lives.” Lead­er­ship, promi­nence, play­ing to our strengths, and acknowl­edg­ing autism’s role in our suc­cess are the oppo­site of what most peo­ple expect of us. The assump­tion that small lives, below aver­age in qual­i­ty and con­tri­bu­tion to the wider world, are the only option for most of us is ableism. The some neu­rotyp­i­cals treat Gre­ta Thun­berg isn’t a mean­ing­ful state­ment on the val­ue her work and mes­sage. Instead, it speaks vol­umes on the prej­u­dice Autis­tic peo­ple face.

Intersectionality

One of the great­est con­tri­bu­tions the dis­abil­i­ty com­mu­ni­ty and var­i­ous move­ments for dis­abil­i­ty rights and dis­abil­i­ty jus­tice make to the wider world is the asser­tion that every­one gets basic human rights, and there can be no com­pro­mise on that. That pre­cept is the best of who we are. At times, var­i­ous groups with­in our move­ments and com­mu­ni­ties have slipped up and made appalling argu­ments that they are more like than dif­fer­ent from nondis­abled peo­ple. Some­times, some of us are guilty of argu­ing “at least our minds/intellects/bodies… are fine” or accept­ing unac­cept­able behav­ior toward some dis­abled peo­ple on the basis of oth­er traits, like race or gen­der. At our best, how­ev­er, we have an unyield­ing way of demand­ing the full scope of human rights for every­one. That is who we must always strive to be, both because it’s right and because it’s the only way to ensure our own safe­ty and well being.

We don’t all need to be activists on every issue. Activism often works best when peo­ple dig into par­tic­u­lar issues, gain­ing knowl­edge, expe­ri­ence, and exper­tise, devel­op­ing deep con­nec­tions with the com­mu­ni­ties they serve. How­ev­er, we must always resist the temp­ta­tion to com­pare and con­trast, to treat human rights as zero sum, to throw some­one else under the bus in an effort to save our­selves or improve our own lot. The only kind of peo­ple we should­n’t accept in our work are those who don’t accept human rights as uni­ver­sal. This is both for moral rea­sons and because peo­ple who can’t accept that kind of basic ground rule have a long track record of ulti­mate­ly exclud­ing us from the cat­e­go­ry of peo­ple they believe deserve the full scope of human rights. There is no safe way for the dis­abil­i­ty com­mu­ni­ty to align itself with some­one who rejects some peo­ple’s human­i­ty. Some­one who has crossed that line once could do it again. It might be in regards to some­one else today, but the group being dehu­man­ized and scape­goat­ed could be ours tomor­row.

Prop­a­gat­ing the idea that human rights are for every­one, that no one is too impaired, or too any­thing, to deserve them, and that every­one is enti­tled to live in the world is one of the dis­abil­i­ty com­mu­ni­ties’ biggest con­tri­bu­tions to the wider world. Any of our lead­ers who buy into the lie that human rights are a zero-sum game and argue for the rights of dis­abled peo­ple or some group of dis­abled peo­ple above, rather than along side of, the rights of every­one else has bro­ken what should be the most basic ground rule of life in our com­mu­ni­ties. Any such con­duct by a dis­abil­i­ty com­mu­ni­ty leader should seri­ous­ly under­mine our con­fi­dence in that per­son­’s com­pe­tence to guide, pro­tect, and speak for peo­ple with dis­abil­i­ties. It should also under­mine our con­fi­dence in that per­son­’s moral char­ac­ter and wor­thi­ness to lead. Our com­mu­ni­ties will not sus­tain them­selves over time if we engage in can­cel cul­ture, refus­ing to let peo­ple make mis­takes, be account­able for their actions, and, ulti­mate­ly, learn and grow, but lead­ing us is not a right. It’s a priv­i­lege and a dif­fi­cult task, one for which not every­one is qual­i­fied.

The fact of the mat­ter is that peo­ple with dis­abil­i­ties are mar­gin­al­ized. We face exclu­sion and dis­crim­i­na­tion. Our expe­ri­ence teach­es us what mar­gin­al­iza­tion and dis­crim­i­na­tion are like, and the plainest les­son of those expe­ri­ences is not to treat any­one else that way. We must also reject every moral prin­ci­ple or eth­i­cal sys­tem that fails to grant every human being cer­tain basic rights uncon­di­tion­al­ly by neces­si­ty. If any­one is exclud­ed for rea­sons of iden­ti­ty, rather than con­duct, it’s a safe bet we will be, espe­cial­ly peo­ple whose dis­abil­i­ties relate to cog­ni­tion or men­tal health. Our moral intu­ition at its best and our self-inter­est both align with inter­sec­tion­al­i­ty. This prin­ci­ple is so fun­da­men­tal to our safe­ty and abil­i­ty to thrive that we can­not accept any­one who fails to under­stand it as a leader.

Climate Change and Disability

It’s hard to think long-term when short-term sur­vival does­n’t seem guar­an­teed, when imme­di­ate con­cerns are vast, press­ing, exis­ten­tial, maybe insur­mount­able. It’s hard to get long-term needs and inter­ests addressed when one’s auton­o­my is lim­it­ed even in the short-term, even in the small­est deci­sions. Most Autis­tics in the U.S. and around the world are famil­iar with the kind of think­ing peo­ple do in des­per­ate places. Most of us have been there. It’s the only life too many of us know. Cou­ple that with ongo­ing, pub­lic ableism among envi­ron­men­tal advo­cates, and it isn’t hard to see why the Autis­tic com­mu­ni­ty’s engage­ment with cli­mate change has been lim­it­ed.* We must change that to the great­est extent we can under the lim­i­ta­tions of our cir­cum­stances. Our sur­vival and well-being, and that of oth­er peo­ple with dis­abil­i­ties around the world, depends on it.

The strong sci­en­tif­ic con­sen­sus is that cli­mate change is real. Worse, it isn’t a prob­lem we can expect to face in the future. It’s a cur­rent prob­lem expect­ed to get worse in the future. Experts are rec­om­mend­ing some steps indi­vid­u­als can take to reduce their con­tri­bu­tions to cli­mate change, but most say that indi­vid­ual action isn’t enough. It will take sys­temic efforts by gov­ern­ments and large com­pa­nies to solve the prob­lem. To that end, Autis­tics and the wider dis­abil­i­ty com­mu­ni­ty must become more assertive about cli­mate change. For us, even more than for oth­ers, cli­mate change is an exis­ten­tial threat. This is a mat­ter of life and death.

Pre­dic­tions about the con­se­quences of cli­mate change for human­i­ty are get­ting increas­ing­ly dire. They include things like more unsta­ble food sup­plies, social unrest and oth­er threats to the rule of law, more and worse nat­ur­al dis­as­ters, increased pover­ty, and more suf­fer­ing and lack of access to basic neces­si­ties among the world’s poor. If those things come to pass, dis­abled peo­ple will bear the brunt of them. We will suf­fer and die, because we are dis­pro­por­tion­ate­ly the poor­est peo­ple in our soci­eties, where sta­ple foods and potable water get scarcer. We will suf­fer and die in soci­eties where cli­mate changed dri­ves scarci­ty and result­ing unrest, mak­ing per­son­al care assis­tance, dis­abil­i­ty ben­e­fits, med­ical care, elec­tric­i­ty, and effec­tive legal sys­tems that pro­tect our rights less reli­ably avail­able. We will suf­fer and die where nat­ur­al dis­as­ters become worse and more fre­quent in larg­er num­bers than our nondis­abled peers because we always do. Where areas become unin­hab­it­able, dis­abled peo­ple, more than oth­ers, will be left behind.

The pre­dic­tions all amount to a more unsta­ble world. Indi­vid­ual mileage will vary, but dis­abil­i­ty com­mu­ni­ties on the whole thrive on sta­bil­i­ty. Too many of us are strug­gling, even in rich coun­tries with statu­to­ry pro­tec­tions for our rights, in a world as peace­ful and pros­per­ous as it’s ever been in human his­to­ry. We can’t afford a world as harsh as the one fore­cast in even mid­dle-of-the-road cli­mate change pre­dic­tions. The futures imag­ined in dis­cus­sions of the worst case sce­nar­ios are sim­ply not sur­viv­able for most of us. Some of the most vul­ner­a­ble peo­ple with dis­abil­i­ties, peo­ple liv­ing in poor coun­tries and those who are also elder­ly, iso­lat­ed, or poor in the U.S., are already suf­fer­ing from the effects of cli­mate change. If we aren’t hear­ing from peo­ple who are already feel­ing its effects, it’s because they are so mar­gin­al­ized that they may not even be con­nect­ed to or aware of dis­abil­i­ty com­mu­ni­ty. If we don’t acknowl­edge that the changes we’re see­ing will cause prob­lems for more and more of us in the years to come, we’re lying to our­selves.

What we can do to address this press­ing issue is lim­it­ed by our cir­cum­stances. Pover­ty and func­tion­al lim­i­ta­tions will make some per­son­al actions and lifestyle changes impos­si­ble for some dis­abled peo­ple. It won’t be easy for Autis­tics and oth­er dis­abled peo­ple to devote some of our own and our com­mu­ni­ties’ finite resources to address­ing this issue. It’s going to be painful. That much is cer­tain. That said, it’s time to start ask­ing our­selves what we, indi­vid­u­al­ly and col­lec­tive­ly, can do to address a grow­ing cri­sis. Tak­ing this issue on will be cost­ly, but ignor­ing it is con­sign­ing many peo­ple like our­selves, some alive today, some to be born in the years and decades to come, to mis­ery. That is not an accept­able out­come.

Peo­ple with dis­abil­i­ties in Amer­i­ca are increas­ing­ly well-orga­nized. In recent years, we’ve had a good track record of fac­ing down exis­ten­tial threats and defeat­ing them. We are used to being cre­ative and resource­ful. We are prac­ticed at fight­ing for our lives. Autis­tics are par­tic­u­lar­ly vocif­er­ous advo­cates when con­front­ed with an exter­nal threat. Usu­al­ly, noth­ing less than an exis­ten­tial threat is enough to get our var­i­ous fac­tions to work togeth­er. Now, those are the stakes. It’s easy to lose sight of cli­mate change among the many issues we have to address. There are so many mat­ters of life and death, and some feel more con­crete and immi­nent. How­ev­er, none will affect as many of us as cli­mate change if it’s left unchecked. The dis­as­ter may be unfold­ing slow­ly, but it is already in progress. This isn’t tomor­row’s dan­ger. It’s today’s. As stew­ards of our com­mu­ni­ty’s present and future, we must try to find ways peo­ple with dis­abil­i­ties can help avoid the worst case sce­nar­ios for cli­mate change. We must take deci­sive action to pro­tect our own and pre­serve our place in the human com­mu­ni­ty for gen­er­a­tions to come.

*Gre­ta Thun­berg may be a pio­neer­ing excep­tion, but the extent of her engage­ment with Autis­tic com­mu­ni­ty is unclear.