Chronic Illness, Disability and Heternormativity on the Tenure Track (A Follow-Up Guest Post)

This post is a follow-up to the guest post earlier this week, “The Real Life of a Tenure Track Faculty Person.”  That post generated an enormous amount of reaction and comment that is still going on.  One of the commenters asked to know a bit more about the chronic illness that the writer had referred to in her original post.  The writer saw the request and responded with this follow-up.  I put it in the comment stream of the earlier post, but I’m also putting it here as a new post in its own right, because I think that it raises extremely important but rarely addressed issues of disability and ablism, as well as heteronormativity (and the ways that these get intertwined through the train wreck that is American health insurance) in the academic community.

KK 4/2105 update:  please read this excellent recent blog post on chronic illness and the academic career.

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I have a chronic illness that can causes debilitating pain (and by debilitating, I mean a flare up can land me in the ER). In my experience, working in the corporate sector (for-profit and non-profit alike) came with much lower hours and deliverable demands than academia, but I really did not do well with a 9-5 schedule. I would rapidly exceed the standard 2 weeks of sick leave in such a job, because I would be unable to work around the times I was in pain. In my academic job, I work more hours and have more stress (more deadlines, more deliverables, more challenges) but I also only have to be on campus for my classes, meetings, and office hours. This means that many of my hours can be moved around according to my health. I rarely miss anything, because even if I am in a good deal of pain, I can usually suffer through a 3-hour class or meeting and then go home and rest. The biggest advantage, for me, was that I was less stressed simply by having more flexibility to respond to my pain level, and this caused my condition to flare up less frequently (since flare-ups happen more frequently under chronic stress).

In terms of scheduling, I don’t know how most departments work, but in my department we have an excellent team-oriented approach. We are required to be on campus three days a week, but not necessarily all day long. Each of us have a top priority when we negotiate for our schedule each semester. This might be having certain days off, times off, etc. We all must work an occasional class in the times/days no one wants, but you can opt for all early mornings or all late nights, if you want (since these are both undesirable times). Even our senior faculty take their turns. It is a very equitable and friendly situation, which I am aware is not always the case in all departments.

One of the problems I have with how we often approach graduate school and academia is the ableism that runs rampant, and the assumptions about what others’ living costs “ought to be.” This is, in fact, a problem in many working environments, but perhaps I expect more out of academics in terms of humaneness and mindfulness of diversity. In my case, I not only live in an expensive city, but I also have my own chronic illness and a partner who has a (for now) chronic disabling injury. I don’t have the perfect scenario of a partner who brings in an equal income to mine and because I am in a gay relationship, we are penalized by both not receiving a marriage tax benefit (i.e., I am taxed at a single rate) and a very high tax on my partner’s health benefits (yes, we’re still grateful to have them, but it means I pay a bonus rate tax of around 30% on her benefits). This equates to about $6,000 of lost net income per year from my salary. In addition, we must pay for alternative medical treatments that keep each of our health conditions and pain manageable. I suppose that if we were both completely healthy and not gay, and therefore I made $500 more per month and we had a dual income household, that we could do all the wonderful things that everyone is talking about — owning a home (which comes with additional tax benefits we can’t get due to our situation), having a child, and being in a better situation all around.

It is easy to say that my situation is unique and others would be better off. Except it isn’t unique. I’d say about half my colleagues and friends have health needs not covered by insurance. Other colleagues have failing parents who they struggle to care for as they fly back and forth; they can’t just relocate as you can in other sectors and taking time off during the push for tenure can be deadly to your career. And all of my gay colleagues face the same problems because of DOMA, which means they basically pay a higher federal tax to be in a gay relationship. Many colleagues are in departments with few resources, who increasingly use their homes (for events and meetings), computers and phones, and personal funds to keep their department’s services and their own research afloat.

I think perhaps it did not come across clear enough in the original post. I love my life. I love my job. I love my students. I love my colleagues. I chose this over the corporate life I used to lead. Saying there are some serious work-life balance and salary:cost-of-living issues (at least in large metro areas), as well as rampant ableism, ageism, and in some disciplines sexism (which reduce your capacity to be picky about where you end up), is pointing out trade-offs and concerns about the humaneness of academia. As I said, I won the job lottery. I’m grateful. But I was trained as a social scientist to be critical of institutions and their cultures, and we do have problems in academia — problems that aren’t fixed just by procuring the TT job.


Comments

Chronic Illness, Disability and Heternormativity on the Tenure Track (A Follow-Up Guest Post) — 13 Comments

  1. Thank you so much again to the poster for articulating these issues in detail. I find this post really important and it has helped me a lot.

  2. I will add, as a note of advice, that in both the corporate and academic sectors, I never reveal I have a chronic illness in the hiring process. Perhaps I would still receive the same consideration if I did, but frankly, it’s not a risk I’ve ever been willing to take. After I am at a position and begin to have a problem, I identify what would help in that particular position and then ask my supervisor for help in accommodating my needs, which are also articulated by my doctor.

    I do this for many reasons — both social and practical. Socially, I worry about ableism and I also do not think it is my employer’s business to know about my health unless and until it affects my job. Practically, every job I have been in is different and I can’t know how my body will respond to work demands until I have been in the job for several months. I don’t know what accommodations I would need in a job until I have a problem and then identify, with my doctors, what is causing my flares. In my university job, I have not had to ask for any accommodation, since my department’s scheduling process is so equitable. In some jobs, I have had to ask to work from home at times, or for days without pay when my sick leave ran out.

    If my condition were less situational and more constant, I might consider asking for accommodation up front in the hiring process.

  3. thank you thank you, and thank you! as someone whose had to plan thier dissertation around surgeries, and then had a few more since my first year at TT faculty—I couldn’t agree more. Unfortunately, not many colleagues “get it”. the only real problem you’re allowed to discuss in terms of how it may impact your job is childbearing and childrearing. Somehow, I think fighting for your life is a bit more of a life disruption than having a grant due the same week as a child with the flu.

  4. Thank you so much for this post. As a young academic with a chronic (and often unpredictable) health condition, I found this extremely helpful. I find my colleagues both very supportive and subtly ableist both at the same time… I think there needs to be more guidance and education around disability and chronic illness in academia, and more support services for academics with these conditions.
    I’m a very dedicated and hard-working academic, but often feel judged for having different work patterns to others (e.g. I work late instead of starting early) and for having to work around my health needs (even though if I didn’t do this, I would collapse… and with me, a whole chunk of our research program). I often end up working longer hours than the rest of my team, partly because I feel ‘guilty’ for having to take some sick days etc. (although still within the annual allowance), and feel I need to prove my dedication more than others do.
    I love working in academia and with colleagues who care deeply about what they do. However I think the workaholism can get a bit unhealthy at times, and is very counterproductive in the end (e.g. given what we know about the need for down time etc. in facilitating creativity and long-term effectiveness). In fact it is this workaholic culture that can contribute to chronic illness in some cases (it certainly exacerbated my illness – but now I face resistance trying to lead a more sensible lifestyle, which in the long-term would be more productive anyhow).
    Thanks again, and all the very best!!

  5. I am also in a TT position with a chronic illness. Very few people in my department know about my condition, and it’s likely to stay that way. I have observed how willing my colleagues are to use private medical information inappropriately. I don’t want to have any suspicion that mine has been used that way. Unfortunately, shielding that part of my life from my workplace has psychological consequences. Having a chronic illness is crappy. Having one with unpredictable, possibly degenerative outcomes (like mine) is scary. But having that be a part of your life is made so much worse by having to keep it a secret.

  6. As I near the end of my Ph.D. I am really concerned if I will be able to pursue a job in academia. Thank you for your post, it is helpful and I am glad that there are people out there able to manage an academic career while having a chronic illness. I hope that one day I can do that too.

  7. I am in the end stage of my PhD which has taken much longer than expects due to having several autoimmune issues and the most debilitating heath issue being fibromyalgia. It has drastically reduced my ability to function on a daily basis and has even hindered my ability to “think”. I have already decided I won’t pursue a job in academia and hope at this point I can hold down a job at all. I am glad to read that some people are managing quite well and hopefully I can get to the point sooner rather than later.

  8. Hi! I have a similar (if not the same) chronic condition described in the post. I am midway through completing my dissertation, and have been going through a relapse for the past couple months, so I’ve been working from home and at about 20% of my non-relapse capacity. My advisors know I am in pain, and are concerned about what might be going on. Do you have thoughts on whether I should tell them the truth of what exactly is happening (i.e. how much should I reveal to them)? My worry is that it might unfairly change the letter of recommendation they would write for me when I go on the academic job market. (Either because of biases of theirs that I can’t control or because they think they are “protecting” me). Thoughts?

  9. Pingback: Horwitz:Another Upside of Being A Law Professor—Chronic Illness - Eric Allen Kauk

  10. It’s incredibly frustrating to be wrestling with sexism, racism, ageism, ableism – sometimes more than one, sometimes as many as all four – on either the corporate or the academic side of the line … and it seems as though there are so many of us who struggle, with so little progress made.

    I mean, the ADA has no teeth, voting rights had to be added by Amendment and have to be watched for impedance and expiration – and as a country we have yet to ratify the EPA, even though as even Sheryl Sandberg admits

    http://www.nytimes.com/2015/02/08/opinion/sunday/sheryl-sandberg-and-adam-grant-on-women-doing-office-housework.html

    http://www.nytimes.com/2016/01/10/upshot/when-teamwork-doesnt-work-for-women.html

    we do close to 75% of the actual labor in the market …??

  11. I have been applying for jobs lately, many of which state that they promote inclusivity, diversity and do not discriminate against candidates based on ethnicity, race, disability and make statements to the effect: This employer does prohibit discrimination based on disabilities. I have been in a quandary as to whether to disclose my disability. I could relate to your post, in that academia allows me to work around my chronic pain.

    I have been told that some employers even want to hire disabled people to meet their quotas: the Chair of a department recently told me they were told they needed to hire as many disabled people as represented as a percentage of the total population. Other academics have told me to never disclose if you have a disability, as it could be held against you. I wondered what your view was on this, should you or should you not disclose?

    If you disclose a disability will it be held against you?

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