This week’s guest blog is on a subject I’ve wanted to see more of on the SGSAH blog. It’s from Jessica Secmezsoy-Urquhart, a first year PhD student at the University of St. Andrews. They are autistic, chronically ill, have anxiety, ADD, OCD, etc. Their research focus is the role of neurodiverse and bodilydiverse disabled entertainers and companions at the Renaissance Royal Courts of England and Scotland. They are a contributor to the BBC’s The Social and are currently working on a video about historical fire arrows. They write and are a filmmaker. They believe history should be inclusive or it is bullshit.
It’s another day in which I practically collapse into bed exhausted. A bad pain day and overwhelming for my neurodiverse brain to boot. I’m 26 and feel like a pensioner. A few months into my PhD and already equally lost and in love with what I’m doing. Alone in a sea of other reclusive PhDs, found among other academics as passionate about their research as I am. Offered support but both me and the providers unsure what that means at PhD. Dis-abled but fighting to show I am ABLE to do this. Such is the life of the disabled PhD student.
I am frankly shocked I even got to this point in academia. The imposter syndrome idea really exists, and arguably, more so for disabled students. It has taken me the whole of the first term to accept I am good enough to be here. The set up of a PhD is seemingly perfect for someone like me, however. Schooling and academia before research level is often terribly suited for those with unique learning and study needs. Now I have a structure of study better suited to my autistic and anxiety prone self and to my chronically ill body. It’s quite weird that disabled students can only often get the flexible form of study and research best for them after two decades of constraining schedules and assessment systems.
I can work when healthy enough with deadlines set by myself and my supervisors, work equally from home, in a library archive, or office. I, as an autistic student, can use my hyper focus and autistic obsession to my advantage picking out details in sources others might not, and through my SGSAH funding I am able to stay at university, thus easing the impact of travel on my health. A PhD is great but it’s hard when you’re disabled too…
It took until 26 for me to move out. Moving out later is more common in Scotland where many students commute but even at this age I found the experience terribly difficult due to my ASD (Autism Spectrum Disorder). My routines were suddenly disrupted, the close bond with my family severed, my world full of new people and faces I was unused to. The first few nights were tough. Likewise I have found so far that many archival spaces are unfortunately inaccessible, either because of the needs of housing and protecting documents, or because of physical architecture. My Raynaud’s means the temperature of some of these spaces is uncomfortable. Additionally, in the first year of the PhD, not having a concrete set of deadlines and goals that show you’ve progressed or not to a set level can be liberating, but it can also leave you feeling you are not doing enough or not doing the PhD “right”. Despite supporting each other, all PhD students can’t help comparing ourselves to one another too. Our output and presence in archives, conferences, journals etc. can become the standard by which we judge our worth. We’re ultimately selling ourselves as much as our research and that can be a humiliating and humbling experience if we let it define us.
When you’re a disabled student this issue is even more apparent. You can be seen as a role model or inspiration because despite your disabilities you got here. You’re proof that you can get here and be disabled. You become an uplifting story that both makes neurotypical and able-bodied people underestimate the needs of disabled students, and an unfortunate message to other disabled students struggling below research level:
“They’re disabled and got to PhD…you just need to work harder”.
The story of how I got here is not simple. It was impacted by my disabilities. I switched from English Lit in 2nd year to History after my health impacted my grades and thus needed to repeat 2nd year at undergrad, I fell in love with the subject again and got a first and prize at the end of that degree but then only passed my taught masters and had to take a year out. Suddenly I didn’t have the structure of University anymore. I had to find my own structure. In the end it helped me develop other life and professional skills such as filmmaking and writing for media, skills now being used by me for research dissemination but at the start of that year I though my time in academia was over. Thankfully I got onto a research masters and did well enough to find funding and a place for PhD at St. Andrews. Like many disabled students though my journey was not a-b-c but more like b-a-c-b-c etc. When disabled PhD students are turned into these feel good stories the many difficulties and needs we have to get here are ignored.
Likewise, there is the issue of how providers offer a PhD student support and how a PhD student accesses that support. When you’re in a typical classroom setting and doing exams both sides know what is required: some extra time for assessments, a notetaker, access to a computer for the writing of an exam and so on. When you’re only ever in a class if you are auditing, often on your own, not taking exams and at research level it becomes difficult for both sides to pinpoint what a disabled PhD student actually needs.
While being a disabled PhD involves such barriers and issues, over this term I have found my own coping mechanisms and solutions which work for me. Living in accommodation slowly became easier as I made myself attend as many events as possible at first to stop my mind focusing on the change. I met friends and started enjoying myself. Over time I got to know people in my shared kitchen, letting them know about my disabilities and began structuring my day and setting up meal plans. When I feel overwhelmed I can go to East or West Sands. A study released last month notes that living near the sea can improve one’s mental health even more significantly than near green spaces.
I’m luckily able to visit my family regularly as they live 70 miles away so my bond with them is just a bit more long distance than before. While archives can be difficult to use, I plan ahead. I bring juice to have once out, dress more warmly than usual and take breaks. I’m trying not to judge myself against others too and instead seeing us all on very different journeys.
Socialising and sharing our good, and bad, experiences helps. Specific groups for disabled PhDs at my uni have been a lifeline. Figuring out PhD support is challenging, but alongside the disability service, my supervisors are helping me work out flexible deadlines, specific styles of study and the disability service are open to unique modes of supporting me like, for instance, having a chair with proper back support in my room which I need due to my straight spine. Over time we will develop more solutions for issues than arise but I feel supported currently.
It is tough doing PhD in general, but when you are a disabled student you have even more barriers facing you. It has taken time but I think I am finding my way of overcoming those hurdles with the help of other people. Yours might be different but they will work for you. We disabled PhDs deserve to be here. We just need to find out what that means for us specifically and shape our degree programme to match our needs and abilities at the level of study where that is most possible.
It seems scary but we can do it.
As ever, if you want to contribute to the SGSAH blog, you’re in luck! We’re always looking for guest blogs, so if you’d like an informal chat, get in touch with our current SGSAH Blogging Intern, Jimmy at email@example.com, or hit us up on Twitter.