Diane Shipley is a freelance writer obsessed with feminism, US TV, memoirs and pizza. She writes about those things and more at her blog, the imaginatively-named Diane Shipley Blogs (http://blog.dianeshipley.com) and is almost always on Twitter (username: @dianeshipley).
You’re intelligent, personable, and get good grades. It might look like higher education is a given.
But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.
Last year, I tried to finish the degree I dropped when I got ill back in 1998. The disability services department at my new university contacted me the summer before I started my course, asking what extra help I would need.
I had never been a student with disabilities before, so I couldn’t anticipate all the challenges I might face. But the system for reporting those I was aware of seemed doomed to failure: a disability advisor emailed my department in the first week of the semester to advise them that I needed my seminars and lectures to be accessible. Inevitably, this was too late. One of my lectures was in a building with a lift that was almost always out of order, leaving me the choice of missing out or making myself ill. And my registration experience was disastrous.
Registration and enrolment were in two separate buildings nowhere near each other. As no buses ran in that direction, this meant a fifty-minute round trip on foot, well beyond what I could cope with. So I emailed the university to explain this, asking if I could register and enrol online, instead.
Here’s where I point out something that should be obvious but seems not to be: when disabled students express a preference, it shouldn’t be brushed aside in favour of what administrative staff would prefer. Being assertive can be very difficult, especially in situations where someone has power over you. Expressing one’s needs can also be embarrassing, as many long-term illnesses and disabilities are stigmatised. It’s an issue that deserves to be treated with sensitivity, but too often isn’t.
Instead of granting my request, a member of staff from registry services suggested I meet her late in the afternoon, instead. Because her address was at the end of her email, and was somewhere I could access by bus, I agreed. But when I went to her office at 5 PM on registration day, the shutters were closed. Tired, upset, and alone, I vented on Twitter: “I don’t think this university cares about disabled students.” Then I called my mum in tears and she offered to leave work and drive me to the building where registration was taking place. I finally made it and explained the mix-up to one of the staff, who said someone there wanted to speak to me.
The head of registry services strode over and introduced herself, a stern expression on her face. She then shouted that I couldn’t say what I liked on Twitter without giving them “right of reply” and that the university did care about disabled students. “I’m fully conversant in equality law,” she snapped. When I mentioned the mix-up over where I was registering, she said that perhaps I should read emails more carefully in future.
She wasn’t wrong: I could have double-checked. But in my defence, starting university was an overwhelming undertaking, and confusion and anxiety are big parts of my illnesses. I had also made the mistake of assuming that no-one would suggest we meet somewhere I had specifically said I couldn’t access.
I was finally able to register but because of the delay, I couldn’t get into the student intranet until two days later, so the seminars I wanted to sign up for were full. This meant that instead of organizing them at times to suit my illness, I had to take whatever was left. When I contacted my departmental disability liaison officer to ask if I could be squeezed into more convenient seminars for a couple of subjects, he demurred, and I got the impression he thought I was trying it on. I didn’t have the energy to argue that this seemingly small issue was essential to the management of my illness.
As I thought I would, I struggled with my schedule. Ten hours of class time isn’t much, but I hadn’t counted on the extra time I’d need to walk to lectures (and then sit down and catch my breath). In retrospect, I needed to take taxis to my classes. But I was reluctant to organise this because one of the disability support staff told me that some taxi drivers were “funny” about short journeys.
But my biggest challenge was the fire alarms, which went off once or twice a week. We would traipse out of the classroom, walk down three or four fights of stairs, stand around for ten minutes, and then go back up again. I had no idea what disabled students were supposed to do, and didn’t know who to ask, so I just struggled on, my muscles spasming from pain and stress.
I know what some people will think: maybe I was too ill to be at university in the first place. But I had a good reason for attempting it: money. In England, if you’re on a full-time course, you are entitled to loans, grants, and bursaries, which add up to (just about) enough to live on. A part-time student is only entitled to £225 a year. So I took a risk.
It’s a risk that failed. Although I could cope academically, physically I was falling apart. After five weeks, I suffered a severe stress-induced relapse and the university recommended I take a leave of absence. This meant I wouldn’t have to reapply if I felt well enough to return, but I wouldn’t be entitled to student finance or disability benefits during this time, either. I only scraped by thanks to my overdraft, a little writing work, and my supportive parents.
This summer, I had to decide whether or to go back. I decided against it. I didn’t feel well, and I didn’t feel welcome.
I don’t think my experience is unique: I suspect it is more common than universities realize. The way I was treated is part of a much larger problem: how we, as a society, view people with disabilities. We need to stop being surprised when someone has special needs, and there needs to be a socially acceptable way of saying “I can’t do that,” or “I need more help”, especially in educational institutions and the workplace.
Policies like the British government’s plan to reduce the number of people claiming disability benefits (without regard for the number of people with disabilities) perpetuate the sadly still prevalent belief that those of us who have disabling illnesses which are not terminal or immediately visible are lazy, when nothing could be further from the truth.
The fact is, students with disabilities need better support. An attempt to understand and cater to students’ individual needs rather than just paying lip service to the idea of equality would be an excellent start.
Perhaps you might try the Open University; I know of at least two people with ME in England who have pursued degrees (or other courses) with them, one of whom started when she was pretty much housebound (she is doing history I think). I could see if I could put you in touch with her if you like.
“I’m fully conversant in equality law.” What a perfect quote–they know exactly what they have to do, and have zero interest in doing anything more.
I’m so sorry that this happened to you.
Thanks, Indigo Jo. I have considered the OU, but there are all kinds of issues involved, with my health and the financial ramifications, etc.
Really, I just want to make the point that I would have been able to pursue full-time study if I had received better help, care, and understanding. I’m not well enough to attempt it anymore, in large part due to the stress of the situation.
I think universities often fail to understand the consequences of their lack of support, and I very much hope this is something they’ll address in future, especially as the cost of university (and of having to drop out) continues to escalate.
‘I think universities often fail to understand the consequences of their lack of support’
Oh yes. So much empathy. The contrast between my current university’s support and the way my previous university just about finished me off…
Thanks AVW — and yes, that’s exactly what I thought! You can only have as much empathy as you’re entitled by law — ie. not much.
Thank you too, Chally, I’m so sorry to hear you can relate to my experience.
Since contributing the piece, I have heard one positive story, so I know some unis are getting it right, but it’s very scary how hit and miss it is.
My school refused to help me with anything related to my autism or hearing loss. When I was using a wheelchair for two months due to a broken foot, they refused to give me access to locked doors that were the only ones possible to enter by wheelchair ramp. I was so pissed at them.
That’s awful Kat. Even if a disability (such as your foot) is temporary, they should help with a reasonable request (like being able to enter a building, for example…)
When Don attended school in the UK, his disability supports were so piss poor that he actually ended up withdrawing and the student union representative supported him in getting his entire tuition back due to the screw ups of the disability office.
Here… well, Don isn’t in university anymore. It was apparently too difficult for the university to work with him around his cancer treatments.
I’m going to be teaching some university classes this year and I’m hoping you can suggest some ways I can better accomodate students with disabilities in the classroom. Obviously, the university has it’s own policies, but it’s pretty clear these are rarely useful . But, there are plenty of things I can do within my own class to make it as accessible as possible.
What types of problems and barriers should I be aware of?
Hi Anna, That’s so shocking and sad, I’m really sorry to hear that.
I’m glad he was able to get back his money for the UK nightmare. I do wish I’d dropped out sooner (instead, I had to pay *them* money). It’s so wrong when people can cope with the academics, but the practicalities elude them — and that’s totally the universities’ responsibility.
I am so glad to see further discussion of disability and university life, it’s one of my key interests in activism and the blogosphere. I think universities are fundamentally set up in ways which make it quite tricky – and often distressing – for students with disabilities to navigate them, and I’d love to see that change.
My experience has been quite different from yours: I was a lot luckier with the people I encountered. I read English at Oxford, where the vast majority of the work is done independently (i.e. very few seminars), so was able to work in my room/in bed most of the time. But even the occasional face-to-face meetings were difficult for me (even with a powered mobility aid to get me there), and I was fortunate that the tutors were very accommodating about meeting times, my need to reschedule, etc. One tutor even came to my room, instead of me going to him, which was fantastic. But all of this would be much more difficult to arrange in universities with different approaches to teaching, involving more contact hours – and I *still* struggled hugely, even with many accommodations. They had simply never had a student in my position before (multiple disabilities including severe M.E., but virtually no cognitive deficits), and so it was hard, even for very understanding people (which many of them were), to comprehend that anyone could be so physically unwell, and yet still be capable of doing good work.
The administrative side of things sometimes felt like a second job, or similar – the whole thing took an absolutely drastic toll on my health, and that’s *with* a huge level of support. I hope so much that mechanisms will be put in place to make things less insidiously stressful and draining for disabled students, because it seems that even when the really egregious fail that you experienced is avoided, the basic difficulties of the university experience remain.
I am a US student and I started law school this semester and have already had two professors tell me that they were confused that my written and test work were not as stellar as my class performance. Well, that’s because I can push through a low day in class by commenting less and because I read very quickly and comprehend well, which means that I am not behind on the topics even if I have little functioning time that week. However, what I can’t plan for is my level of energy and mental function for a specific week or day. Luckily, with my thyroid semi-in check, I can function enough to be a low B student, whereas if I had the energy level and focus of a good day, I would likely be a high A student. I can’t even imagine what I would do if I had the level of energy and low sleep time of my classmates. My professor looked at me like I was lying when he noticed I was extremely tired and suggested I rest over the weekend and I responded that I had slept thirteen hours the night before and generally spent at least two days of the weekend doing nothing but resting (I do not have friday class and I try to use that day to catch up on homework, do house chores, or get groceries because the latter two take an entire day’s worth of energy to do, which is why my laundry pile is huge and my sink is full of dishes). Maybe if it was just one condition, I could work out some sort of accomodation system, but when it is a complex interaction between two rare diagnosed conditions and a number of extremely impairing symptoms not covered by those, I end up having to do every single thing for myself.
The school where I recently attended for graduate work was about 40% on-site students and 60% online students. The online students would have discussions on a message board created specifically for each class, and they could download their readings and sometimes even video lectures from the same place. There was also a drop box to submit assignments online.
While it didn’t work for me, because I have huge executive functioning issues and ended up dropping out anyway, I can see online classes being a big improvement for people with physical disabilities. You can do all of your schoolwork without leaving your home, as long as you have a computer and reliable internet access. I wish more places would offer this as an option.
I had to withdraw this semester – unfortunately, my chronic pain makes it hard for me to concentrate, even if I take it easy and don’t go to class.
Luckily, my campus is small, we can apply online and register for classes online. However, we have many multiple story buildings with one elevator, and the building where all the classes related to my major are has one that’s been broken for about a year now. And the 2 in my dorm keep breaking – and we have multiple fire alarms a semester including at least one early in the morning during exam week – and the whole walking down from the 9th floor and standing around for 30+ minutes makes my pain worse and makes it harder to fall back asleep – this led to me completely blanking on a 8am exam.
One thing related to college that is probably unique to the US (sigh) is health insurance. Until very recently (last year!), if you weren’t in college full-time, you could be dropped from your parent’s insurance at 21 or 23 (it’s 23 for my dad’s). Thankfully, we’ll be covered til we’re 26 regardless of being in school. But health insurance and PWDs (especially young adults WD!) is another issue.
I can relate to what you have been through. My university said they were very open to accommodating me, but once I needed more than their standard programs offered, I was told I should question whether I wanted to continue my studies. I now distance learn at Open University, and so far get the accommodations I need.
I feel for you so much in this post. I go to university in the UK, and I am very aware of how lucky I am to be a TAB person – my university is not friendly to disabled students.
Things like an accessible bathroom – on a landing with a flight of stairs on either side. And in one of the main buildings I have classes in, forget actually being able to get out of the building if a fire alarm went off – there’s a ‘fire safety’ point within the building, with a phone, so disabled students can let people know that they’re inside still and might need some help getting the lifts working. An ‘accessible’ library entrance that I can’t even figure out how can be reached without using stairs (and also requires at least a km walk from the main entrance).
Sadly my university is currently going through a lot of funding cuts, so me trying to raise these issues is met with derision by the student body as well as anyone in authority – they’re more worried that the courses they want are facing the axe, not that they weren’t ever accessible to some people to begin with. One society I’m part of did campaign for lift access to the top floor of the student union building, where our meeting room is; we now have it, much to our pleasure, but it took two years and repeated complaints.
I too hope that universities stop doing this and so more people can have full access to education. You also have my very best wishes for finding a path that suits you and not too much beaurocracy along the way.
Thank you fromutopie, Cat, notemily, Kaitlyn, Astrid and Jo for sharing your experiences and offering empathy. I’m sorry I don’t feel up to addressing all of the valuable points you all make, but I so appreciate your contributions to the discussion, and feel so much less alone reading about your experiences, even though they are for the most part not very positive. I think funding cuts certainly play a part in the lack of services for PWDs — accessibility is never a priority in a bad economy.
I just have to keep hoping that awareness will grow, and intolerance and stigma will become less and less able to thrive. But it seems we’re quite a long way off at the moment.
I think another point is not just variations between universities, but within them too. At my university (where I haven’t needed any support so far, touch wood, but some friends have and have said the disability people are quite good) there are two departments were you can basically forget it – the central disability people can do as much as they can, but these departments don’t feel the need to make any sort of adjustments for students with disabilities. I think if they could nail a sign above the door telling students with disabilities to sod off, they would.
I relate to this post so much. I absolutely cannot stand how crappy universities are to disabled people. The very first time I could not make it to an advisement appointment (because I had just become disabled and was having difficulty just getting to the campus, nevermind getting around IN the campus), I emailed the head of my major’s department and explained everything that was going on and could I do it over the phone, her response was “crutches happen, you shouldn’t have done this, but you should have done, x, y, z.” When I emailed her a response saying “crutches didn’t happen, a new disability happened to me” she just replied (OFFENDED) that that was her way of saying “you never know when life will throw you a curveball” and “there’s many disabled students on campus.” UGH. And that was just the tip of it. When a professor was actually nice and compassionate about my disability I almost cried because it was so unexpected and no one in “higher education” had been that nice to me before. And it was just one sentence.
TLDR, I definitely feel for you. And I wish people could remember that accessibility is so much more than elevators (but yes, we’d like the elevators to work TOO!) and that every disabled student is going to need specific and different requirements.
Ugh, so sorry to hear about your bad experiences Yasona. But I am glad you experienced a little kindness, too. You’re right Marge, so much is down to individual departments/members of staff as well. There needs to be campus-wide support for people with disabilities, or there’s almost no point having a disability support department.
Thank you for this post. I can really relate. I have MS, and recently had my first flareup since enrolling in my MA program. I was left without use of my right side for a few months, as well as new lesions causing cognitive difficulties, and I just knew I had to take a leave of absence if I wanted to heal. But when I called the campus disabilities office for help, advice on whether it was the best idea, what kind of accommodation they could help with if I didn’t take a leave, etc, I was told the only person there wasn’t the right person to talk to, and that they’d “pass my message along.”
Get this: many phone calls and emails (over the course of two months) later, I HAVE NOT HEARD BACK FROM THEM. NOT ONCE. Seriously. I eventually just made the decision and had to hound-dog the paperwork and make all the phone calls and perform all the exhausting tasks administrative stuff requires without any advice or support. It ended up being ok, but I am still hurt and baffled by their total lack of response. I am sorry you had to go through being let down by your university’s disability services, too. And I can’t help but wonder…should we confront our universities when this sort of thing happens? Do you think it’s worth it to write the disabilities office an official letter of complaint? If I can’t get them to return my phone calls, would they even read a letter?
Yasona, your comment about crying when someone was actually compassionate with you hits home for me. I was struggling so much in grad school because of depression and anxiety and executive functioning problems and ADHD, and all I was getting from my teachers were lectures about how I need to just suck it up and do the work even if it was hard, and that’s just life. When one of my teachers actually asked if I was okay and if I needed any help, I broke down crying because it was the first time anyone had seen that I was miserable.
Hi Mare, I’m so sorry you had that experience. I’m especially shocked there wasn’t one person who would even talk to you, that’s disgusting. I feel like my disability support department made a bit of an effort, but they were the only ones, and had no way of enforcing their requests to departments, so it was down to me to argue my case to different staff members, over and over; a terrible system.
I did complain about how I was treated at registration, but the head of registry services claimed his staff did nothing wrong in how they treated me, and my student union rep (who’d supported me to that point) turned round and agreed with him. So yeah, I agree with you that writing a letter may well not help. I wish I knew what would.
What about writing to the HEFCE? Hit these Universities where it hurts – in their pockets. A lot of Higher Education establishments often seem to forget that without students, they’d be defunct. (And with a copy letter to the appropriate Vice Chancellor.) At the very least they should be informed about what’s going on in their own University. The HEFCE does have quite a bit of clout – after all, they don’t want bad publicity about places they are funding, do they?
I am so sorry that your experience was terrible, and wish that it didn’t sound ‘typical’.
Mental illness is a gem to deal with via universities in the United States- I have severe bipolar, and the way it works at universities here, is I have to bring in all the proper documentation from doctors to the disabilities office, who then just tells the professors basically “She’s not faking it, we have documentation!”
Then I get to, alone, individually track down all my professors hopefully in enough time before classes actively start after the registration process, and hash out with them all the ‘allowances’ I may need (for me it’s a problem with attendance and deadline dates if I have a low hit me, that I can usually make up if allowed later with extra course work or just with what I turn in being well done even if it is late, should the professor allow late turn-ins.)
So yes, the student who has depression and anxiety attack problems has to go to professors they may have NO IDEA the temperament of, to work out all alone what their professors will or won’t do for them. And I never was given a clear idea of how little a professor who doesn’t want to deal with a ‘problem disabled student’ could get away with in terms of their cooperation.
I just really lucked out with a number of professors who WERE very willing to help out, but the few ones who were standoffish, unconvinced, or ‘too busy to make more allowances’ really added to problems.
@bakafox I’m sorry your system is leaving you so terribly unsupported – it sounds to me as though tracking down all the professors and so on would probably be a struggle even for a TAB student, let alone for a student who is already dealing with disability. It sounds as though the disability service is acting as a gatekeeper, policing people’s disabilities or illnesses, and not really offering help at all. How disappointing.
Here in the UK, the disability support office is supposed to be able to perform a liaison role, communicating the student’s needs to the lecturers or tutors who need to know about them in order to provide accommodations. I very much doubt that this is actually performed everywhere, though. At my university, they were helpful when it came to passing on information, so that I didn’t have to do it all on my own (although as I got to know my tutors [i.e. ‘professors’ in US-ian], I did end up communicating with them directly a lot more). I was extremely lucky in the main support worker I had, who was happy to take on a large amount of accommodations-related admin stuff for me, but later on in the course, some problems did develop surrounding the funding – there wasn’t enough money to pay for the amount of time I needed her to help me. I went through a very stressful period when I was afraid that I’d have to take over a large section of her work, even though I could barely manage what I already *was* doing.
I think the poor state of university finances in the UK is likely to affect disabled students disproportionately: my experience shows that even in a willing, supportive institution, money trouble can make everything far more difficult than it should be.
I’m truly sorry for all that you have been put through in your time at Uni. I know the problems you speak of all too well. Last spring I filed a very substantial civil rights complaint for disability discrimination against my college with the US government, and I still arrived back this fall to a dorm that did not have the grab bars I need to shower safely installed in my dorm (despite an open investigation for my complaint). After investigators were here on campus for almost two weeks in August, my college is asking to do a 302 (a 302 is basically a resolution letter that resolves a complaint before the Office of Civil Rights issues their findings/violations) but I wonder how much, if anything, will really change. This semester I’ve already dealt with a number of disability accommodation issues and its very tiring (as you already know). I would love to only have to worry about my academics! I want to tell you to hang in there and give it one more try, that it will get better, but sometimes it just gets worse. My college has a new president who seems to want to change the way disability is dealt with around here, but I wonder if the rest of campus is even ready to be receptive to a change. Just this week I had a horrid experience with an unreasonable professor that I’m still waiting to hear back on how it will be dealt with. Having a disability on campus can be. so. very. trying, to put it mildy. The level of unreasonableness students with disabilities encounter can be hostile and one must be prepared for such nonsense. It’s a shame that this is the way it is at so many places of higher ed.
The bit about the fire alarm! I had a similar experience in college: Living on campus, on the fourth floor, I had no idea what I was supposed to do in the event of a fire drill – the elevators shut down. I’m a wheelchair user, but I can walk short distances, if I have to. So I spent a good 15 minutes struggling my way down the stairs – while the director of residents life was RIGHT THERE – because I didn’t know what else to do. By the end, my friends were almost carrying me. Later, I found out that I would have been able to stay in my room and the fire dept would be notified I was there, but she never told me any of that.
Just one of the many health setbacks that could have – should have – been prevented by better communication regarding the rights/responsibilities of a student with my set of disabilities. But, for the most part? I was on my own, figuring it out (and making it up) as I went.
I’m sorry your experience was so difficult as well – and that it prevented you from meeting your goal.
Can I just mention on this – you should have been allowed your student loan whilst on leave of absence – and universities are consistently failing to inform students of this. I found myself in a similar situation and my university informed me that they had written to my local authority to stop my funding because I was on a leave of absence. Because I didn’t have the funds to scrape by without any money for 6 months (the length of time you have to wait before you are allowed to claim benefits) my mum wrote on my behalf to my MP, asking what on earth I was supposed to do. I have a copy of the letter she sent back – from the minister for universities etc at the time – stating that the student loan is there to cover us during this period and that it shouldn’t be stopped. So frustrating that no one knows about this – and could have saved me an awful lot of stress and hardship if the university had advised me correctly in the first place!