The little engine that couldn't.
November 2, 2014 1:00 PM   Subscribe

I have grad school. I have lupus. The two are not friends. Help me to start asking for accommodations when needed despite resistance.

I can't write a prospectus and side research projects, work 40+ hours a week, and rock the house like I used to when I was able bodied. Despite being in a psych PhD program, faculty don't seem to entirely get it. I once asked for an extension on a project despite always having delivered early or on time and was brushed off. My program regularly has classes that end at 9 p.m., which can get pretty painful for me. Also, I've been called out for leaving the room repeatedly to use the restroom (I have kidney issues). When I've tried to explain that I have no control over how high functioning I am in the evening, or that I need to have a break every ~45 minutes, or sometimes I might be physically not so great, sympathetic noises are made in my general direction....and then nothing. I've been trying workarounds, such as having my partner pick me up after late night classes since I'm in bad shape after, but feel like this isn't really sustainable.

I've asked my major professor about taking another year and was told that that's a non-starter. So, I go about the business of continuing to act like a bright and shiny grad student who is thrilled to work 100 hours a week. I feel as if I live a secret double life as a sick person. It's costing me big time. I've been hospitalized every semester that I've been in my doc program save one.

I still value my privacy and am not keen on making a huge "I'm sick!" announcement to my department. I don't want to be viewed as a weak link, which although I know that peeps should be understanding, that's not how the tiny corner of the world that I inhabit works. Also, I look fine, which I think is really confusing to those who don't have experience with invisible disabilities. I wish that I could get faculty to understand that I'm doing the best that I can and am still giving 127%.

I would love to hear from other grad students or former grads who have similar experiences and find out how you balanced impression management with your health needs.

Please, no exhortations to Triumph! Over! The Pain! Been there, done that.
posted by batbat to Education (13 answers total) 5 users marked this as a favorite
Your school's Office for Students with Disabilities (or similar title) should be able to help run interference on this for you. You'll need documentation of Lupus from a physician and a request for appropriate accommodations. Then, they can run you through options of how to make reasonable accommodations and will formally request this from your department for you. Best of luck to you.
posted by goggie at 1:02 PM on November 2, 2014 [12 favorites]

goggie has the correct answer here - you need to notify your institution's disability accommodations office and get their help. It's often the case that professors aren't keen on dealing with student accommodations in any other way - just as you value your privacy, professors don't want to know the details of their students' medical conditions and they will often prefer to work through the intermediary of the disability accommodations office. The point of those offices is to communicate your accommodations needs without you having to send announcement to your department (which you should not do and should not feel as if you need to do).

I would like to emphasize the "reasonable" part of accommodations. Your institution is not required to make all accommodations and you need to have an idea of exactly how you want your institution to help you out. For instance, it sounds like you are pursuing a professional program while working - if that's the case, it's not clear to me that an accommodation of ending classes earlier is reasonable. In addition, institutions are not required to compromise academic requirements - so, unless there's an explicit connection between your disability and needing an extension on a project (for instance, to go to the doctor), they are not required to provide that extension.
posted by saeculorum at 1:24 PM on November 2, 2014 [4 favorites]

Response by poster: Not to threadsit, but I should have mentioned that I am registered with my school's disability services office. They hand me a letter at the start of the semester that I give to faculty members which indicates that I have documentation of a disability and should receive extended deadlines and excused absences as necessary. That's not working as well as one would hope.

Also, I don't work outside of school...I have an assistantship (which pays my tuition), practicum, and lab hours. I've recently started saying no to additional lab/research duties, which hasn't gone so well.

Thank you for the answers. I really appreciate the support.
posted by batbat at 1:36 PM on November 2, 2014

I have documentation of a disability and should receive extended deadlines and excused absences as necessary

This statement needs to be made more specific, since "batbat doesn't have to finish assignments on time and doesn't have to attend class" is not a reasonable accommodation. The disability services office should help you with clarifying this statement (and shouldn't have made such a broad statement in the first place).

If you have a vague idea of how much time you will spend at the doctor or approximately when you will be at the doctor, that information can be used to make the accommodation more specific, and hence more reasonable. The accommodation needs to be specific for your instructors to use. For instance, you've stated that you are looking for a break every 45 minutes, which is a very specific (and in my mind quite reasonable) accommodation - could that be written into the accommodations letter? Similarly, an instructor that singles you out for using the restroom (?) is acting inappropriately to begin with - but faced with an accommodations letter that explicitly mentions that is now acting against university policy and federal law.
posted by saeculorum at 1:58 PM on November 2, 2014 [1 favorite]

That's not working as well as one would hope.

I hate to send you back to your disability services office, but if you are not being accommodated to the stipulations in your letter, then your professors are violating federal law and your office of disability services should be running interference for you. That is a hit and miss thing - some ODS folks are great, some are terrible - but helping you with situations like this is part of their job.

If you are being accommodated according to your written accommodations but they are not sufficient, then it's probably time for a doctor's visit, further documentation, and a revisiting of your accommodations with your ODS contact.

In the meantime, you are likely going to have to disclose and likely going to have to do some education about invisible disabilities. Unfortunately, in situations like this, our privacy is often at odds with getting what we need. That sucks. No, professors don't want to know the gory details, but unfortunately, too many professors don't take accommodations seriously (even though they should - see also, federal law. I've had students tell me horror stories...) until they know something is "actually" wrong. If you're lucky, your disability services office may be able to help you decide how to and what to disclose.

Also, unfortunately, be prepared not to be taken seriously (which at least you're already experienced with, alas), since 1) invisible disability and 2) tv shows making a joke out of autoimmune diseases like lupus.

I'd start with disability services. They really should be the ones helping you navigate this. Also, do you have a graduate omnibudsmen/Dean of Students/someone who can help you negotiate for that extra year (likely unfunded, but that's better than killing yourself with work)?

Hang in there.

(On preview, what saeculorum said.)
posted by joycehealy at 2:02 PM on November 2, 2014 [4 favorites]

Best answer: I had to find someone who was a) willing to work with me and b) willing to explore different accommodations because my graduate school had no experience dealing with people with non-learning invisible disabilities (and they were glad I'd forged a path at all because the year I graduated another student started who had a visible physical disability and I'd forged that path in front of them). In my case, that person was the liaison between the university disability office and my program.

I also went to go see each of my professors during office hours and talked to them about what was going on and did my best to keep them informed throughout. And I was a frequent visitor to the Dean of Students office for my program to get help that way as well. Having a supportive partner helped as well (and if supportive partner is willing to pick you up, that is a reasonable thing to continue). Not as much privacy and not all professors cared but it often helped. You also have to be unafraid of advocating for yourself--you are a professional now and you will have to do this after you graduate as well.

You need to have an idea of what your ideal work schedule looks like given your issues and what you can reasonably do and as much as possible put things in positive rather than negative language. Your doctor may be able to help you with this. If not, maybe one of the non-profits who works with lupus can help you figure out what normal accommodations look like for lupus and perhaps put you in touch with someone who has been where you are (which is invaluable). I know that when I was in your shoes, I didn't even know what to ask for because I wasn't sure what would help.

I cannot imagine you are the first person ever to need more time to finish your program. On preview, Joycehealy is right that it may be unfunded, but your health comes first. So...if your thesis advisor will not help you, I would see if the Disability Services office will mediate a session between you, thesis advisor (who if they are supportive can help with some of this), and either the department head or the Dean of Students office. At universities where I have studied and worked this was a normal part of the Disability Service Office's job.

Re: impression management: It helps a lot if you underpromise and overdeliver and if you meet deadlines as often as possible. Let people see you looking sick and coming in anyway when you can (I know for me there was a point between sick enough that I looked it but not so sick that it would have helped to stay home where I could come in). Make sure your work is flawless. My father the professor always tells me that you can get away with a lot when your work is exemplary but a lot less if it isn't and damned if the older I get the truer that becomes. I hate to say this but based on what family in lab Ph.D. programs have told me, it might make a difference if you are in the lab when other people are in the lab, regardless of what hours you might put in otherwise. People need to see you working. Do work that you can while resting. IF you can take your break standing up and stretching in the back of the room, that might help. This is practice for when you have to do the exact same kinds of things to get tenure, unfortunately.
posted by eleanna at 2:13 PM on November 2, 2014 [2 favorites]

I might start by trying to revisit the issue with disability services for two reasons. First, the accommodations they're supposedly providing don't address the issues you're having and second, you're not actually receiving those accommodations. The latter might be that the department are being jerks or that you need to step up communication with instructors at the beginning of the semester. (For example, discuss with them what the best way to ask for an extension is. Would they rather you say "I don't know if I'm going to make the deadline" a week in advance and then turn it in on time or wait until the absolute last minute? I'd assume everyone is going to pick the former.)

It sounds like they've given you an incomplete list of accommodations--you shouldn't be being called out for needing to use the bathroom frequently, for a start. If you expect to leave the room more frequently than the classes have breaks, that should definitely be in the letter.

The nature of grad school is that you're at the mercy of the department to a large extent because you fall into the crack between students and employees. You probably also want to figure out what office handles workplace accommodations for employees, which may or may not be part of the same office as does classroom accommodations. Unfortunately, it would not surprise me in the least if one or both offices were totally unequipped to handle a graduate student's situation. This means you probably are going to have to disclose the effects if not the details of your health to someone in the department and your advisor (who I'm assuming is the boss of your lab work). The classes that have been taught at night since time immemorial suddenly aren't going to become day classes, but they could endeavour to avoid having you TA classes that meet on days when you have a night class. It's hard to know if that's a realistic expectation--it's something my department would have done, but plenty of departments don't give a toss about graduate student welfare.

This statement needs to be made more specific, since "batbat doesn't have to finish assignments on time and doesn't have to attend class" is not a reasonable accommodation. The disability services office should help you with clarifying this statement (and shouldn't have made such a broad statement in the first place).

For the record, such statements are totally typical of accommodation letters. I strongly suspect they just have a boilerplate list of accommodations for common diagnoses. I've had a student give me the letter and say "I have no idea what good numbers one and two are going to do me, but I do need items three and four."
posted by hoyland at 2:13 PM on November 2, 2014 [4 favorites]

I'm married to a tenured pscyh prof.

What you need to know is that professors are often unaware of university policies regarding disability. My wife is on her fourth school and I don't think she has ever even once received formal training on the details of the academic programs little less the specifics of less common things like disability policies. They learn them slowly through experience and by taking on admin roles where they fumble around figuring things out.

You need to advocate for yourself. Don't 'hope' for dispensations. Demand them. Expect them. Accept no less. If you ask for dispensation go in the with the documentation that backs you up and explain the need and provide an alternate timeline and arrangement. Make it no work for you to be granted what you want and you will more than likely get it. Do it as early in the process as you can as well. Last minute requests will get you skepticism.

(I once got grief for not doing enough work during a semester in my Phd 'excursion' where I was on medical leave after a protracted battle with mono even though the leave required me to sign a legal document declaring I wouldn't do any work. I ended up dropping out shortly thereafter (due to a mostly unrelated realization I had an incomplete academic tool-set) but not before a classmate mentioned it to their (senior faculty) adviser and my (junior faculty) adviser got a lecture for it.)
posted by srboisvert at 8:01 PM on November 2, 2014 [1 favorite]

I'm a TT professor at a research university and most of my friends are too. There are a few amongst us that have invisible disability or autoimmune issues and to be totally honest with you, this line if work is both fantastic and awful for those that don't always have control over their ability to work. On one hand, once one is done with coursework, one can kick ass and work like crazy during good periods and do the bare minimum during bad periods. (And always be proactive with deadlines.) But on the other hand, the constant stress and deadlines and other people's needs (that student needs to defend his thesis even if you're having a bad health day) makes it difficult to say the least.
I feel for you, I really do. But if you were my friend, I might ask you to think about if this type of lifestyle is compatible with your current and future health situation.
Sending warm thoughts to you.
posted by k8t at 8:14 PM on November 2, 2014 [2 favorites]

Some of the comments above don't accurately describe how the process of disability accommodations works at my current university. Obviously, I have no idea how things are structured at your university, but I thought I'd offer my perspective just in case it might be helpful to you.

Here, someone from ODS meets with students to discuss the nature of their disability. After receiving documentation from a student's health care professional, a list of recommended accommodations is drawn up for the student on a course-by-course basis. The list of accommodations may not include exactly what the student requests, but some reasonable accommodation must be offered. This list of accommodations is then presented to the faculty member as a list of *recommended* accommodations. The faculty member can decide to follow the recommendations or not. I suspect that most simply follow the recommendations. If the faculty member decides that the list of accommodations is not, in her judgment, reasonable, she would discuss this with someone from the ODS and a compromise would be struck between the person from ODS and the faculty member. Again, some reasonable accommodation must be offered, but it might not take the form originally proposed by the ODS.

How is this relevant to some of the advice given above? Well, here you cannot demand *specific* accommodations and doing so could end up being counter-productive. Second, faculty do have a say in what counts as reasonable accommodations, so you may want to keep that in mind when thinking about how you approach this with the ODS. Third, faculty members here are not allowed to discuss potential accommodations with the student; if, hypothetically, a faculty member disagreed with a proposed accommodation, they can only discuss this with someone from ODS.

It isn't entirely clear where the difficulties are arising in your case, but maybe the best thing to do is go back to ODS and ask for another officer, if this is possible (usually there are several at big universities), and ask about where the problem occurred in the last round of accommodation requests. Perhaps it would also be a good idea to go to the meeting prepared with a list of a range of accommodations in case they cannot offer you your first choice.
posted by girl flaneur at 9:22 PM on November 2, 2014 [1 favorite]

Best answer: I think rather than asking for small things here and there, you should sit down with your professors and tell them what you need to accomodate your disability:

1. I need to have a bio-break every 45-minutes.
2. I need to be done with work by 7:00 PM
3. My work weeks need to be comprised of only 40 hours

And finally:

Based upon my disability and the limitations it places upon me, I need to be able to scale back, and because of this, I need to take an additional year.

Perhaps you can mediate this with your Diabilities Coordinator.

You must advocate for yourself, because if they keep piling it on, and you keep doing it, nothing will change.

When you stand up for yourself, you're standing up for others with similar disabilities, so don't think of this as some 'it's all about me' thing, it's all about all of us with chronic conditions that limit our energy and abilities.

I have Valley Fever and while it's been well-controlled for a couple of decades, I was miserable in undergrad and had no way of voicing what I needed or asking for help.

Don't be ashamed, illness is nothing to be ashamed of. Insist on accomodation!
posted by Ruthless Bunny at 5:43 AM on November 3, 2014 [3 favorites]

Response by poster: Thank you all for the incredibly insightful feedback. I plan on making another appointment with disability services.
posted by batbat at 1:54 PM on November 3, 2014

About the only thing I can add to all this excellent advice is to suggest that if you encounter barriers, try to distinguish the types of requests you want to make because you may not be asking the right questions or asking them of the right person. For example, a request for changes in the manner in which a course is taught is usually the starting point. These are technically called a request for "academic adjustments." An extension in the time to hand in assignments is a very typical academic adjustment. This is a straightforward disability services question.

It could be, however, that your assistantship is more like being an employee than a student. In which case you may consider whether someone employed at your institution who assists employees with employment accommodations has better insight.

Under the ADA, you (as a student) are also entitled to request a "reasonable modification" of any policy, procedure or practice if necessary to avoid discrimination. Say, for example, you decide that due to your condition,you need to request a reduced work load of some kind. That would be a request for a reasonable modification. I point this out because the disability office may not have the authority to grant requests of this kind. If so, ask them who can consider your request.

Finally, you should know that the law (the ADA and Section 504) requires that your request for an academic adjustment or reasonable modification be granted unless to do so would fundamentally alter the program at issue. If they offer you an equally effective alternative, they do not have to offer you exactly what you requested. The other defense an institution has to not grant a reasonable modification request is if it would be an undue burden financially. The decision whether a request would be a fundamental alteration must be a reasoned decision, not simply based on a single professor's opinion about a requirement. And undue burden is based on the entire budget of the institution, which means it almost never can be successfully used to deny a request.

I hope a little technical knowledge helps you. Good luck!
posted by Prayless at 9:08 PM on November 3, 2014 [2 favorites]

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