Many states issue “special wage certificates that allow employers to pay disabled workers according to productivity rather than hours worked.” Working under these rules, a disabled person can expect to make less than $4/hour. Some people think paying disabled people less is a good thing, as shown by this response when Maryland ended sub-minimum wages for disabled people:
@thinkprogress Now there is less incentive to hire workers with disabilities! Yay! Great job, team leftist!
— We’re an Idiocracy (@Melvin_Udall_) May 8, 2016
If a worker is less productive, should they be paid less? This is not an abstract question for me.
As a sick graduate student, I take longer to produce academic products like papers and degrees than the average well graduate student. Instead of the 4-5 years expected for a PhD student here, I’ll likely take 6-7 years. Additionally, my living expenses are higher because of my illness; despite living in a country with socialized medicine, I still have thousands and thousands of dollars a year in uncovered medical expenses.
I am worth less to my PI, the university, and funding agencies.
When I was admitted, I was guaranteed not 4 years of funding, but a minimum level of funding within my first 4 years – a critical distinction. Accommodations allow my program deadlines to be extended, but fellowships and funding guarantees don’t come with extensions. Even though my fellowships saved my lab money over these four years, the lab doesn’t have to pay me anything once they’re over.
I understand why. Grant funding is scarce and comes with lots of strings. My PI planned to fund me from grants that had to be spent within that 4 year period – on me or something else. Saving money for me from those grants in case I took longer than the average student was impossible.
In some ways I’m a model chronically ill student. I’ve been very cheap for my lab. I’m proceeding through my PhD relatively slowly, but 4 years in I’ve won multiple prestigious fellowships, got all my data, published a paper, finished classes, and advanced to candidacy with a solid research proposal. Yet my ability to finish is in question because of funding.
I’m not alone. Many students who are ill during their PhD encounter serious financial barriers within the university.
- Many fellowships have strict time limits. Going on medical leave can cause students to lose fellowships, either because there is no deferment option or because the time limit expires – or both. Few fellowships pay anything during a medical leave.
- Part-time work has full time fees. In addition to causing time limit problems with fellowships, working on a degree part time because of illness is not institutionally supported. Universities typically charge full-time tuition and fees and most fellowships just won’t pay part time students. When they do pay, it’s usually a proportional payment. Unfortunately, your food bill doesn’t halve when you work half time.
- Medical leave is very limited. Even when fellowships have flexible policies around medical leave, university policies can cause problems. My university allows 2 years of leave for PhD students, but only 12 months of that is allowed to be medical leave. Sick for more than a year is too sick for a career in academia, apparently.
- Medical leave is expensive. Universities often charge hundreds of dollars a term in leave fees while limiting access to student services like libraries, exercise facilities, and transportation subsidies. During that time, income-earning activities that could help pay those fees (and living and medical expenses) are usually prohibited. Students may lose access to their doctors at student health services, and, especially in the US, may lose health insurance altogether.
- Graduate students don’t receive disability benefits. Graduate students typically don’t receive short-term disability benefits from the university to cover medical leaves as part of their benefits package, let alone long-term disability benefits.
- Funding doesn’t stack. If I bring in extra money through fellowships, it replaces my existing funding. This makes it impossible to save up for medical leaves or extra time completing my degree.
- Funding doesn’t pay into government programs.* Many of the ways students are funded is tax-exempt, so students aren’t paying into Social Security (and international equivalents). If the student does need to transition to long-term disability, this can leave them eligible for only a very small fraction of an already insufficient disability allowance and completely disqualify them from other assistance programs.
Funding for graduate students is generally carefully and explicitly designed to pay students a subsistence stipend for a limited amount of time. Some students are explicitly told by their PIs that they find cutting off funding at 4 years useful for encouraging students to finish. Some professors and administrators suggest fellowship programs reduce award sizes to fund more students or that students with generous fellowships who TA are taking funding away from students who really need it.
This funding structure and culture discriminates against students with chronic illnesses who may take longer than a well student to complete their degrees and isn’t helpful for people with dependants either.
None of my colleagues would ever say to me that they think I shouldn’t be a scientist or that chronically ill and disabled students should be barred from academia, but when there isn’t (adequate) funding for sick students, chronically ill students are effectively excluded from academia.
If I am not funded at the level necessary to survive and continue in academia, I am removed from academia. When students are valued based on productivity alone, those that are worth less become worthless.**
Whose problem is this? Should my PI be responsible for funding me when my fellowship runs out and I’m not finished? The university? Should the funding agencies?
I understand why PIs don’t want to or can’t: funding me means not funding a healthy student who will likely produce more papers with less money. When papers are the only real currency, this can have existential repercussions for labs.
Perhaps additional funding for chronically ill and disabled students is a reasonable cost for universities, funding agencies, and scholarly societies as it intersects with their diversity goals. Chronic illness is much more prevalent in poor people and groups that experience discrimination – people we claim to want in our universities and in science. Disabled people are also are sorely under-represented in science. Addressing the funding challenges that accompany chronic illness and disability is essential if we’re serious about diversity in science.
Probably (hopefully!) you don’t believe that sick and disabled students are worthless to the academy, or even worth less. Probably you’re also struggling with funding your lab if you’re a PI. So what can you do?
- Advocate for your graduate students to have generous, flexible, funded leaves. Students should have leave benefits as generous as those provided to other university employees. If you don’t have leave benefits, advocate for yourself and your students/employees.
- Consider making funding promises that are at least as long as the average time to graduation for a student in your field/university/country and do not tie it to specific dates.
- Make sure graduate stipends are at least a living wage.
- Advocate for your university to provide additional funding sources to chronically ill and disabled students for materials and scholarships. Most student disability offices have incredibly limited resources.
- Advocate for your university to provide flexible work arrangements for chronically ill graduate students. That is, a half time student should only pay half tuition and be paid enough to live on.
- Push for accessibility to be the norm at your university, reducing expenses for disabled people and allowing us to participate. (Examples here, here, here and here)
- Vote for politicians who support strong social services, like universal health care and guaranteed incomes.
All of this, of course, is a result of a system where a scientist’s value is their productivity, measured in papers. Many others have argued elsewhere about the damaging effect this has on academia, so I won’t recapitulate their arguments here. Addressing these systemic problems will be good for almost everyone in academia and for many outside of it.
How have you supported chronically ill and disabled students and other employees? Where do you think support could or should come from? Did you encounter financial barriers as a chronically ill or disabled student? What resources were you able to draw on?
To solidarity in a better academy and world!
* This is a serious problem for many who spend years in academia as it also affects retirement.
** A topic deserving a post of its own – many, many people who are pushed out of academia experience this.