Autistic Future
September 10th, 2016

The Disabled Student’s Seventy Hour Week

someone with red nail polish works at a desk. she has a laptop, coffee, highlighters, and papers

The dis­abil­i­ty com­mu­ni­ty may be the only part of Amer­i­can soci­ety where some of the blan­ket state­ments about mil­len­ni­als are true. It is also one of the least like­ly to bash mil­len­ni­als. The ADA gen­er­a­tion, my gen­er­a­tion, of dis­abled Amer­i­cans tru­ly has enjoyed unpar­al­leled oppor­tu­ni­ty. Our rights don’t always get enforced, but some­times they do. Just hav­ing them, not remem­ber­ing any life with­out them, may make us more con­fi­dent than we would oth­er­wise be. We are will­ing to embrace dis­abled iden­ti­ty in grow­ing num­bers. Instead of writ­ing op eds on how young peo­ple are bring­ing about the demise of civ­i­liza­tion, our elders sup­port us. They’re hap­py for us to use it and excit­ed to see how far we will go giv­en more and bet­ter of every­thing than they had.

That isn’t to say that the rights and sup­port struc­tures avail­able are enough for every­one. Many Amer­i­cans with dis­abil­i­ties are still trapped in iso­lat­ing, coer­cive set­tings or locked out of the work­force and con­signed to crush­ing pover­ty. How­ev­er, a num­ber of us have been able to take advan­tage of how much eas­i­er things are for us than for pre­vi­ous gen­er­a­tions. We are going to col­lege and get­ting grad­u­ate and pro­fes­sion­al degrees in hopes of hav­ing careers that will move the cause of dis­abled peo­ple fur­ther. We do that in the same social and eco­nom­ic cli­mate as every­one else, and we do it under dis­tinct pressures.

The obsta­cles that we some­times face include the ones that affect every­one (astro­nom­i­cal tuition) and obvi­ous dis­abil­i­ty issues (acces­si­bil­i­ty prob­lems and dis­crim­i­na­tion, assis­tive tech break­ing down at just the wrong time, etc.), and bar­ri­ers that are less obvi­ous but sig­nif­i­cant (finan­cial lit­er­a­cy may be worse in parts of the dis­abil­i­ty com­mu­ni­ty than in the rest of soci­ety because of low expec­ta­tions). Some of these issues are part of the pre­vail­ing nar­ra­tive of dis­abil­i­ty and col­lege, ‑I’m not sure there is such a nar­ra­tive for grad­u­ate and pro­fes­sion­al school yet- and some are not. At least in my own Autis­tic com­mu­ni­ty, I have noticed a con­cern that is lit­tle-dis­cussed and seems lit­tle-known out­side of dis­abled cir­cles: the prob­lem of jug­gling work and school.

In the Autis­tic com­mu­ni­ty, going to school to pre­pare for pro­fes­sion­al advo­ca­cy roles and lead­er­ship go hand-in-hand. This tends to mean that our soon-to-be pro­fes­sion­als are tak­ing on sig­nif­i­cant dis­abil­i­ty-relat­ed vol­un­teer com­mit­ments dur­ing their degree pro­grams. Paid roles and com­mit­ments, while scarce, are also not unheard-of. To the extent that there is a pre­vail­ing nar­ra­tive of dis­abled stu­dents in high­er edu­ca­tion, it isn’t moon­light­ing. It isn’t exten­sive work on top of a course load that some find par­tic­u­lar­ly chal­leng­ing because of their impair­ments, inad­e­quate sup­ports, or dif­fi­cul­ty stay­ing con­nect­ed to dis­abil­i­ty com­mu­ni­ty and iden­ti­ty while in school. The sto­ries we here don’t include run­ning from class to a fundrais­ing meet­ing, but those kinds of expe­ri­ences would ring true for many younger advo­cates who are also full-time students.

Dis­abled stu­dent-advo­cates take on these kinds of work­loads for a vari­ety of rea­sons. One is gen­uine pas­sion. Anoth­er is just how bad things are ‘back home,’ so to speak, just how much dis­abled peo­ple in our soci­ety are still strug­gling. The dis­abil­i­ty rights or jus­tice move­men­t’s issues are still incred­i­bly fun­da­men­tal. We’re work­ing on things like access to edu­ca­tion and the bal­lot box, basic forms of per­son­al auton­o­my, access to trans­porta­tion, access to employ­ment, and end­ing dis­crim­i­na­tion in med­ical care. This is the stuff of life, death, and basic civ­il lib­er­ties. It can be hard to stay away with that at stake for one’s people.

At least in the Autis­tic com­mu­ni­ty, there is also our cul­ture’s entan­gle­ment with the inter­net. The inter­net has a very short mem­o­ry, and the Autis­tic blo­gos­phere gives new mean­ing to the phrase ‘pub­lish or per­ish.’ One has to keep writ­ing and being seen to keep one’s name from fad­ing away over the course of a degree pro­gram and to con­tin­ue to cul­ti­vate con­nec­tions that may be impor­tant lat­er. These demands can quick­ly add up to an almost com­plete absence of spare time. It’s easy to get dan­ger­ous­ly overex­tend­ed, and the prob­lem can be hard to notice when so many of one’s friends and peers are in the same boat.

My expe­ri­ences with gain­ing sig­nif­i­cant expe­ri­ence while in school have been good. The sto­ries I hear are just anec­do­tal evi­dence, but they lead me to sus­pect that most young dis­abil­i­ty rights advo­cates feel the same way. How­ev­er, I’ve known peo­ple who worked to the point of los­ing schol­ar­ships and end­ing up in dan­ger of not com­plet­ing their degree pro­grams. Most of them con­sid­ered that a prob­lem, at least while it was going on. Some did not. In the cam­pus orga­niz­ing I’ve done, I’ve always admon­ished my class­mates to put their own oxy­gen masks on first and pri­or­i­tize school over oppor­tu­ni­ties that may be more fleet­ing than the val­ue of a well-select­ed degree. I want peo­ple to end up in the kinds of work that will be mean­ing­ful to them and do not want the ranks of the dis­abled des­ti­tute grow­ing on my watch. Going with­out for­mal qual­i­fi­ca­tions has its risks, maybe espe­cial­ly for us.

Ulti­mate­ly, it comes down to per­son­al choice, but I won­der how we do more to sup­port stu­dents mov­ing into advo­ca­cy roles with these chal­leng­ing deci­sions. How do we make men­tors avail­able, espe­cial­ly to the young lead­ers who may be the most des­per­ate­ly need­ed, the ones whose back­grounds are under­rep­re­sent­ed in pro­fes­sion­al roles in the dis­abil­i­ty com­mu­ni­ty? I also won­der whether dis­abil­i­ty ser­vice offices on col­lege and uni­ver­si­ty cam­pus­es in this coun­try have the cul­tur­al com­pe­ten­cy to spot these issues and help stu­dents work through them in a respect­ful way. Peo­ple who are simul­ta­ne­ous at the age of a typ­i­cal col­lege fresh­man and oper­at­ing under extracur­ric­u­lar demands that some­times look more like an adult learn­er’s may need spe­cial guid­ance and sup­port. Until the nar­ra­tive can stretch to encom­pass this real­i­ty, young advo­cates in school are unlike­ly to get the full ben­e­fit of help and advice that might make it eas­i­er for them to suc­cess­ful­ly nav­i­gate com­plex deci­sions and reach a pos­i­tive outcome.