The Disabled Student’s Seventy Hour Week
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.
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.