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.
Tenure, She Wrote 
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Reblogged this on Access This! A Disability Blog.
Thanks for writing this. Structural challenges for women who have babies are very similar, although for us, the issue is more transient. Unfortunately, these challenges remain at the postdoc level, and perhaps get worse. Once you get your PhD, your productivity officially “counts” as papers-per-year-since-PhD. I hope we can all move policies forward to support inclusion of all scientists. We must change academic culture so that science is valued for its quality and not the speed with which it’s produced.
“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.”
This. Oh, God, this.
I have incredibly high standardized tests scores and undergrad grades from a prestigious university, and I had my choice of fancy fellowships to do a PhD at another prestigious university. I have a set of very useful, extremely specialized skills currently in high demand in my sub-field, including a demonstrated ability to work productively with people from other disciplines. My writing has won prizes, my talks have won prizes, my posters have won prizes, my public engagement has won prizes. My students love me. Hell, I’m even super-competent at random admin.
I am probably not going to make it in science.
Why?
(1) I cannot work more than about six hours a day. If I try, my pain levels ratchet up from my normal levels of “I’m in more pain daily than I was in the first 23 years of my life, including broken bones and a major surgery” to “hell.” I’ve tried working through “hell,” and I ended up doing physical and psychological damage that took nearly a year to undo.
(2) Medical expenses completely bankrupted me during my PhD and will continue to leave me very poor for a very long time. I need to chose “money, now” over “work for free in way that might further my career.” As a PhD student, going on medical leave would have resulted in me losing my access to health care, so I didn’t. Unable to make my stipend stretch over my final unfunded year, I worked part-times jobs instead of concentrating on my dissertation or trying to publish papers and only just barely managed not to starve. I took the first post-PhD job that was offered to me, even though the my supervisor thought I should hold out for something more prestigious, and started it immediately upon finishing my PhD, even though my supervisor wanted me to take some time to submit things for publication. (Said situation not helped by the fact that I worked for two months as an assistant for this supervisor and never got paid, but that’s another story.) And while I’m very happy in my current job, the longer I sit on these papers “in prep,” the worse my CV looks.
And maybe science would be better off without me. I mean, who in their right mind would hire a postdoc who can only work 6 hours a day, when a full-time postdoc would be working way more hours than you’re technically paying for? I am, by definition, not a hard worker. It is literally physically impossible for me to be “dedicated.” I am very, very good at my job, but there are lots of people who are very good at my job, and there are only so many jobs to go around.
I don’t know what the right answer is.
Have you seen PhDisabled blog: https://phdisabled.wordpress.com/ The UK is working on some guidelines for advisors, etc., to help support these students. Can’t lay my virtual hands on the web site right this minute.
Yes! PhDisabled is a great resource and I’ve done some work with them in the past.
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This is something that I am thinking about a lot now that I have started my post doc position. At this time, I mostly feel lost and overwhelmed figuring out how to navigate a new healthcare “plan” that is far less comprehensive than the student insurance I took for granted as a graduate student. I’m finding that there is far less structure in general in the post doc phase (as mentioned in comments above).
The next hurdle will be discussing things with my PI to see what kind of flexibility I am in for. Based on stories from other post docs in the lab, I anticipate some support in terms of paid time off from my PI. One could always presumably be reading, writing or thinking… which is part of what we’re paid for. In my experience, large periods of absence from the lab have always included intermittent periods where I was able to do at least one of these three things, and when I have returned have been able to move forward. But my longest period of absence has been a month, and so this kind of arrangement has been sustainable.
I strongly believe that a large part of support for students and post docs with chronic conditions needs to come from the PI. This is the person who has hired or recruited you as a human being, with the understanding that this is a longer term investment [read: 5-7 years] on the part of both the PI and trainee. Usually, the trainee overworks well beyond what the salary compensates for when they are able, and so the PI’s investment should include flexibility to allow for time off with continued pay when needed.
That, of course, is only one aspect of the many things that need to improve to accommodate employees who are underpaid and overworked — with or without chronic health conditions.
“Usually, the trainee overworks well beyond what the salary compensates for when they are able, and so the PI’s investment should include flexibility to allow for time off with continued pay when needed.
That, of course, is only one aspect of the many things that need to improve to accommodate employees who are underpaid and overworked — with or without chronic health conditions.”
Great point!!
As a disabled (neurodiverse) junior faculty member, I can honestly say it gets worse the higher you go. I managed okay with my disability during my PhD and postdoc years, but have been completely annihilated on the tenure track. The lack of compassion has come from students and peers, mostly. I wish the academy were a safer place for those with disability, but it is simply full of ableist bullshit.