Chatting and posting on PhDisabled has really made me think back to my PhD days. Many sick and disabled PhD students are struggling with many issues directly related to disability and illness which have a great impact on their research.
It was only when I started to share some of my own stories that I realised just how many battles I had had to fight. While my chronic illness was pretty well supported, as a visibly disabled student using an electric wheelchair there were huge needless issues ranging from access and "health and safety" to outright stereotyping.
In my last post I addressed how I worked through my PhD with a chronic illness. In this post I go through some of the many unnecessary battles thrown up during my time as a PhD student and beyond, showing that disablism is sadly alive and kicking.
Strangely, being visibly disabled was, for me, less well dealt with than my illness. This is despite the fact that you would have thought being a wheelchair user at the start of the twenty first century was no longer a big issue. The Equality Act 2010 was still a few years away, but the DDA had already been in place for many years.
Yet for instance I was at various stages banned from my own building, banned from the library (I was a "fire hazard"), banned from my office a second time for a whole 3 months while health and safety argued over whether I could bring in my portable oxygen.
Even when I eventually won the right to enter my own office I was placed under strict time restrictions due to my personal evacuation plan which involved 2 members of staff getting me out via the fire-proof lift. I could only be in the building if both members of staff were present.
Ironically, this evacuation plan would not be used in the event of a real fire as it would be "too dangerous" for said members of staff. I would instead be left on my own in the presumably burning building until the fire crew arrived. Kafkaesque? Yes. But true.
I was the only person in the whole department who, if renting a car, had to arrange my own private transport to conferences etc, paid out of my own private money and then claim it back months later. This was due to the fact that the university did not have a contract with a company which owned wheelchair accessible vehicles.
No one told course or talks organisers that a wheelchair user would be present. It was left to me to find out what courses I'd be doing, who was responsible for them, and to let them know about my access requirements. (This appears to be common and an unnecessary addition to a disabled PhD student's workload.) Unfortunately this was often repeatedly forgotten and talks had to be moved at the last minute.
This was not much appreciated and I, rather than the organiser, was blamed, as shown by emails sent to all staff saying
"Sorry for the inconvenience, we've had to change the room for the wheelchair user AGAIN!".Imagine how I then felt as we traipsed across to the other side of the campus in the pouring rain.
I was often the butt of annoyed "jokes" about this. The whole situation was unnecessary. I raised the issue of the emails, pointing out that information about the room change could be given without raising the question of wheelchair access, but was told that I was being "too sensitive".
During my time in the department a project was started with the installation of great new technology whereby several lecture theatres at different universities could be linked up via an IT network. A talk, seminar or lecture could be given remotely and followed at several universities at once, a bit like skype on a grand scale.
There was dispute as to which room this system should be installed in. To my horror I found out that a non wheelchair accessible lecture theatre was a strong candidate.
I was appalled, particularly as due to deteriorating illness, travel was becoming more difficult and I intended to make use of the technology. I also felt that disabled academics are particularly likely to need this and in any case it would also be wrong to exclude us from any lectures given via this medium. This went not only for me but for any future students and members of staff as well.
This was eventually taken on board after I talked to several people, and the chosen room was wheelchair accessible. However this created some bad feeling due to the fact that it was smaller than its inaccessible counterpart and I received some nasty comments as a result.
Due to the age of the building a standard sized electric wheelchair couldn't get around, and so I used a smaller electric wheelchair when getting around during my office hours. I became the victim of bullying on the part of one particular person who took exception to the fact that my outdoor electric wheelchair needed to be stored in their larger open plan office. This person verbally abused me and even somehow physically removed my wheelchair and left it in the corridor.
Rather than address the issue I was told that person was leaving soon (in a couple of months) and perhaps I could work from home until they did. In the end I made arrangements with another colleague and left my wheelchair in their office. However this was both unacceptable behaviour and resolution of the problem.
Finally, I often encountered what I would term "casual disablism" in that people assumed that I was not a PhD student or a researcher simply because I was a wheelchair user.
It was very common for people to ask why I was in the university building where I worked. I distinctly remember one conversation (but by no means the only one):
What are you doing here, love, can I help you find the way out?*Not that there would be anything wrong with an office job, but it was the "found you" (as though it would be "make work") and the belief that I couldn't possibly do anything else which was rather telling.
No thanks, I'm fine. I work here.
Oh, that's nice. Have they found you a job in the office?*
No, actually I'm one of the researchers. I'm on my way to my own office.
Really? I didn't think people like you could do that sort of thing
While I was still establishing myself as a researcher and people didn't yet know me, I also had the following conversation at a conference
Hello, are you lost?This was by no means the only example and is rather worrying when you consider what it reveals about fellow academics' attitudes. This was semi-confirmed when I phoned up to confirm wheelchair access for my first important academic job interview and I was asked if "I was sure I was up to the job".
Um, no. I'm the invited guest speaker...
Oh my goodness. That's amazing. You'd never think so, would you?
When I did finally graduate one final hurdle was set in my path. The university had 2 graduation halls. One was wheelchair accessible and the other not.
The university refused to guarantee that my ceremony would be held in the wheelchair accessible hall. I was told I would have to wait for the timetable (issued 2 weeks beforehand) to find out.
No one in my department was willing to help. No one seemed to think this was a problem and everyone just thought it was acceptable to "wait and see". Yet while my fellow PhD students were eagerly making plans for the day, I was nervously waiting to find out if I could attend my own ceremony. I had to make reservations and rent out gowns etc without knowing whether I would be able to use any of it. As it turns out, I was lucky.
I made an official complaint about the process, pointing out that having an accessible awards hall does not make the graduation accessible if you are not guaranteed to have access to it! I do not know whether changes have been made. This is a typical example of how something can look accessible on paper but not in practise.
Later on, after my PhD, when I obtained a research fellowship I discovered that there were fundamental flaws in the application process for any future grants I might need which were discriminatory. I won't go into them here but it creates a strongly uneven playing field for disabled people who get past the early stages of an academic career.
Still worth it
Yet despite all these setbacks and fights, no one should lose sight of the fact that studying and working in academia can be hugely rewarding and for me was worth every single battle.
That said, I think academia needs to wake up to the fact that it still has a long way to go before it is fully inclusive and not rely on the fact that it is "better than 20 years ago". This may be so, but there are large improvements to be made, and with the recent cuts to DSA things look set to get worse rather than better.