We need to talk about disability and chronic illness during the PhD


As we go through life (and for many of us, go through a PhD), we naturally accumulate adversities. When a new hardship rolls around I tend to respond in three steps:

  • Step 1: Grieve. All seven stages.
  • Step 2: Find a community of people also afflicted by my hardship, whether online or off.
  • Step 3: Rebuild my life around this hardship with the support of those found at step 2.

So when I developed a chronic illness and associated disability in the second year of my PhD the thought of resources, support and others out there who might share some of my experiences was comforting.

When I went looking, I was surprised to find something of a void. First, I scoured my University’s website. A disability counselling service is available (and is helpful) but is not specific to higher degree research. The Graduate Research School makes no mention of disability on their website, but maybe other Universities do better?

PhD support blogs such as the world.edu, PhD Life, and Get a Life PhD are silent on the topic (you are right about this – sorry – Editor). I couldn’t find much of a hashtag community on Twitter either. Broader communities do exist, such as #phdchat (for PhD students) and #spooniechat (for people with chronic illness), but very little to combine the two.

There are a few wonderful blogs (for example: PhDisabled is a space for disabled students to share their experiences), but many are dormant and most are concentrated in the UK and US. Besides, why should a discussion of the added struggles of disability and/or chronic illness be limited to specialty blogs?

That disability has not reached the mainstream of diversity discussion in academia is surprising, though could be attributable to a lack of data. Although we know that around 1 in 5 people in Australia have a disability, little is known about the numbers in academia.  Gauging this is particularly difficult because many people choose not to disclose their conditions. We do know that people with disabilities are under-represented in tertiary education and that they report high rates of dropout. Nonetheless, significant numbers still exist and there is no reason to believe that this does not extend into higher degree research and beyond.

Why does it matter?

There is no denying the double-layered ‘Valley of Shit’ that the combination of chronic illness and a PhD provides: it is irrefutably awful. Whether the illness brings pain, depression, fatigue, anxiety, decreased mobility, stigma, endless appointments or some glorious combination of these, it makes an already difficult journey more difficult. It might make it hard to concentrate, to conduct field work, to go to workshops or conferences, to attempt networking, or to do any other essential requirement of a PhD. Due dates get missed, supervisors get cranky. And of course there is the constant concern about being ‘outed’ to colleagues and potential future employers. Recruitment discrimination against people with disabilities is real

On the other hand, academia can provide an excellent work environment for people who are unwell. Arrangements can be flexible and work can be delivered from bed or wherever is most comfortable. Disability advisors, while not specialised, are invaluable and not available in many other industries. And, most importantly, there is the particularly nuanced and invaluable perspectives that disabled and chronically ill people can bring to their departments and to their fields. These mutual benefits can be achieved but only with support, most importantly a supervisor who is able (better yet: trained!) to provide some flexibility for unwell students.

Where to turn?

I recently tweeted out asking for other disabled PhDs to contact me and was overwhelmed by the response. Obviously we are out there, and probably many people have a better established support network for this than I do. But what if they don’t? What if we all just need support through on a solo journey, with no acknowledgement of the extra-phenomenal nature of our achievements?

My efforts eventually led me to find Chronically Academic (CA), a small but growing network of academics with chronic illness. CA share my goal to raise the profile of academics with a chronic illness and/or disability and create a network from which members can access peer support. They have a blog, a Twitter page, a Facebook page and a private Facebook group, and while this group is not specific to Australia their member presence here is growing. You can join the Chronically Academic network here.

At the very least, establishing richer networks might help PhD students with chronic illness and/or disability feel less isolated. At best, maybe we can encourage the non-disabled academic community to notice, support or even value us. I think we deserve that.