Autistic Future
May 26th, 2019

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.