The extra work of being a disabled PhD student

Being a disabled student is already difficult to begin with, as my illness leaves me with less time and energy than my able-bodied counterparts. This impacts my ability to work, but it also impacts my life outside of the university. Whilst it is a legal requirement for institutions to make reasonable adjustments to avoid disabled people being disadvantaged, the path to gaining accessibility is not always a straightforward one. In fact, we often have to do a lot of extra work to create better and more accessible working environments. This can be very draining, and in itself is another barrier that disabled students face in higher education.

Here, I discuss 4 examples of extra work associated with being a disabled student, drawing from my experience as a PhD student with chronic migraine.

1. Lots of paperwork...

Unfortunately, most people in academia have to deal with paperwork on a regular basis, which can be very tedious and time-consuming. However, it can actually be quite distressing for disabled students, who must fill out lengthy forms to "prove" themselves in order to get help.

For example, to be able to access the Disabled Students' Allowance from the UK government, you must read and complete a 29-page form. This includes chasing your university's disability services to fill out part of the form, and you also need to include a doctor's note. It can be very painful and re-traumatizing to recount and disclose how your disability affects you and "prove" why you need help, to complete strangers. It can also be extremely invalidating if they reject your application. Despite filling out the form, providing a doctor's note, and clearly showing that I fit the criteria, they rejected my first application. This was very disheartening and I had to wait months to get another slightly differently-worded doctor's letter. Overall the whole process took around 6 months for me to be able to access equipment and software that was supposed to prevent me from being disadvantaged...

This process is often repeated many times throughout a PhD, having to keep proving yourself and recounting personal, and often traumatic information to continue receiving help.

2. What actually helps you work..?

"Disabled" is a broad term, and there are lots of different types of disabilities. In fact, even people with the same disabilities have unique experiences and challenges. So with that in mind, do you think that one box of equipment from the government's Disabled Students' Allowance will help everyone...?

...Not really! Whilst the generalised equipment provided can be useful, it has not massively increased my ability to work. So, disabled students often have to go on a journey of self-discovery to figure out what reasonable adjustments would help us be less disadvantaged. This journey can be very time-consuming, energy-consuming, and even expensive. For example, one of the main factors of my condition which prevents me from working is pain. Unfortunately, the government and the university will not fund/provide me with pain-relief aids, so I've spent a lot of time and money trying out equipment to help relieve pain and increase my ability to work. In addition, even though we have disability services at my university which have been helpful for broad ideas, I have still had to figure out what working pattern suits me, how to be able to complete lab work, where to rest on campus etc.

This journey never really ends, and disabled students will often have to keep pushing to be able to learn about and access equipment and methods that can make their working environments more accessible.

3. Not an undergrad, not a member of staff...

As a PhD student you are in a weird position between not being an undergraduate student, but also not being considered a member of staff. It can therefore be really confusing and energy-draining to figure out who to go to for help, and what you are entitled to.

For example, what do you do if your chronic illness flares up and you can't work? Undergraduate students are often able to receive extensions to help them complete their work during difficult circumstances, however, PhD students do not usually have taught components throughout their studies that would require an extension. Members of staff are entitled to paid leave depending on how long they have worked at the university and the length of their absence. But what about me? The Doctoral College handbook states that I can apply for a suspension, but this seems to be unpaid. In this current economic climate?!

I found out (through luck) from other students that PhD students can actually be entitled to sick pay depending on their funding. For example, UKRI students can receive 13 weeks of paid leave per 12 months. After many emails, I was informed that I was also able to receive sick pay. Unfortunately, I only learnt this a year into my studies and had to "push through" my first year.

I'm sure there are many other disabled PhD students who have also had to work hard to figure out what they are entitled to, or are still not aware of what they are entitled to because they don't have the extra energy to research, email, and network.

4. Ongoing battles with healthcare providers...

It's not just university life that requires extra work for disabled students, we often also have to keep fighting behind the scenes. An example of this is with healthcare, particularly if you have an underresearched disability and/or illness, and if you belong to any marginalised groups.

Many disabled students may require frequent visits to doctors and/or hospitals, which takes time and energy and impacts their ability to work. At one point, I was having weekly doctor's appointments to monitor the effects of a new medication. However, many students may not be receiving adequate healthcare and will have to spend a lot of time researching their own conditions and pushing for the right diagnoses and treatment. I spent the first year of my PhD trialling different medications (which didn't work and gave me bad side effects) and trying to follow up on my referral to an NHS specialist. However, after waiting a year to see a specialist, the appointment was terrible and I am now in the process of complaining and getting a second opinion, which will impact the second year of my PhD. It is very distressing to not have access to adequate healthcare and is disabling in itself, as I have been denied treatment that could improve my condition.

Unfortunately, many disabled students are likely to be stuck on waiting lists or going through a complaints process, which is very emotionally and physically draining, and will impact their ability to work.

The disabled PhD student's workload is heavy!

Overall, there is a lot of work behind being a disabled student, on top of the work that is usually expected from a PhD candidate. Combined with the fact that these students may already struggle with day-to-day activities, you can see how this creates extra barriers for disabled students in higher education.