Why aren’t we talking about living with chronic illness during your PhD?

I have accumulated many, many notches on both the ‘diversity’ and ‘adversity’ scoreboards in my life. When a new hardship rolls around I am experienced at how to cope:

  • 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, one of the most comforting thoughts was ‘Well, maybe I’ll make some new (also disabled and completing a PhD) friends out of this!’

It turns out that this has been harder than expected! First, I scoured my University’s website for resources or services. 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. Prominent PhD support blogs, such as the Thesis Whisperer, PhD Life, and Get a Life PhD, are silent on the topic. 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.

I did come across the wonderful PhD(isabled) blog, but this has been dormant for over a year and is hosted in the UK where the disabled PhD experience is very different to Australia (they have a Disabled Student Allowance!) Besides, why should a discussion of the added struggles of disability and/or chronic illness be limited to specialty blogs? Indeed, a very large proportion of people doing a PhD must surely live with chronic illness – just like the general community, right?

There is no denying the double-layered Valley of Shit that the combination of chronic illness and a PhD provides: it is undeniably awful. Whether the illness brings pain, depression, fatigue, anxiety, decreased mobility, 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. A myriad of additional support is required, most importantly a supervisor who is able (better yet: trained!) to provide at least some support for unwell students.

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’re all just struggling through on a solo journey, with no acknowledgement of the extra-phenomenal nature of our achievements?

Maybe I am alone in this wish, but I would love to see a better network of disabled PhDs. I would love to see some resources about how to manage. And I would love to see PhD support services acknowledging that we exist. I think we deserve that.

5 reasons you should stop making jokes about dementia and Alzheimer’s disease.

Whenever I tell someone that I work with people with dementia, I am invariably met with a hilarious joke along the lines of “How do you remember to go to work? Ho Ho Ho!” or “I guess it wouldn’t matter if you were bad at your job, they wouldn’t remember anyway! Har Har HAR!”

Aside from not being funny, jokes like these make a mockery of a serious illness that has serious consequences. Here are five (of many) reasons why they need to STOP.

1: They’re disrespectful and hurtful

Just like making jokes about any other disability or illness, making a joke about dementia is disrespectful to the people it touches. Dementia can be devastating for the person diagnosed and their family, causing impairment to memory, language, thinking, planning, driving, independence and more.  More important than that, a person with dementia is always at their core the same person they always were: maybe fun, opinionated, strong, intelligent, lively, thoughtful, trustworthy, organised, funny, kind, and so on. Just like everyone else, they have skills and wisdom that they can and do share on a daily basis. Making jokes not only makes light of the very real consequences of their disease, but also dehumanises the person behind the illness and downplays the valuable contribution they make to society.

2: They discourage people from seeking help


Unlike cancer, for which the profile has grown so much that one wouldn’t dare joke about it, dementia is a heavily stigmatised disease. People with dementia commonly report feeling embarrassed about their diagnosis and often don’t want friends and family to know. Jokes that paint an inaccurate picture of what it is like to have dementia are partly to blame for this: of course you’d be embarrassed if all you’ve ever heard is that dementia turns you into an incontinent, rambling mess. This discourages people with dementia and their families from accessing care, support networks or activities that can provide them with vital information and a community to make the journey easier.

3: Dementia doesn’t just happen to older people

When you make a joke about ‘senile old Aunt Milly’ or say ‘she’s just old and demented’, you are ignoring a large and growing group of people with dementia that emerged in their 40s, 50s and 60s. Young onset dementia (YOD) accounts for up to 9 per cent of all dementia cases, and can have devastating consequences for the person and their usually young family. People with YOD repeatedly report difficulties and delays with obtaining a diagnosis, and this is in part because of the wrong assumption that dementia is an ‘old persons disease’.

4: Even if it did, older people deserve your respect

At a recent conference I attended, one expert lamented that “so much of the difficulty in preventing, curing or caring for people with dementia comes down to ageism”. This could not be more true. Our society values youth to an extent that ageing is seen as a slow descent into death, with dementia a natural consequence of this ageing (which it is not). The nihilistic approach of “well, she’s going to die anyway” robs people with dementia of their personhood and of the care and support they deserve. Making jokes only perpetuates this ageism and the perception that the wellbeing of older people (and people with dementia) is less important than yours.

5: They’re not funny

You're embarrassing yourself.
You’re embarrassing yourself.

Like, really not funny.

Please stop.

An open letter to Virgin Australia: people with disabilities are more important than money.

**Disclaimer: Beyond the temporary impairments I discuss in this article, I am not disabled. I can’t speak for disabled people, and my words on this topic should not be considered more relevant than those of people living with disabilities.**

Dear Virgin Australia,

About three months ago, I had shoulder surgery. I had fallen off my bike about 9 months earlier and dislocated my shoulder. The surgery and subsequent rehabilitation hurt a lot, but more of a burden was the inconvenience and loss of independence that came with having my arm in a sling for 5 weeks.

About four days after my surgery, I flew domestically with Virgin Airlines from Sydney to Adelaide. This was difficult and painful, but necessary so that I could be with my family for my recovery.

This experience revealed to me what people with disabilities have probably been experiencing for years: the needs of people with disabilities are less important to you (and probably many other large corporations) than money.

First, my request (weeks in advance) for a spare seat next to me were flatly denied unless I bought an additional ticket (I’m a student, hells no could I afford that). Now, this didn’t get my too offside because I thought, sure, it’s reasonable that you would want some money for that seat.

I started to get somewhat cranky once I arrived at the airport in my sling and was told that I needed a sick certificate from my doctor in order to be allowed to fly. Again, I get it – you’ve got to be sure I can get out of the plane if we go down.

Under sufferance, I was let on the plane only to be reminded of the inconvenience I was causing no less than 6 times at various points of my journey. Like dude, I’m sorry but I am SO HIGH on pain killers right now oh and also no one ever told me about the rule EVEN THOUGH I BOOKED OVER THE PHONE AND TOLD THE CHICK THAT I WOULD BE IN A SLING.

The thing that really, really riled me, though, was the boarding process. Before general boarding, you made a call for those requiring ‘special assistance or extra time’ and I thought, great! That’s me! But no, apparently that call is for people in wheelchairs only. Seriously? You’re still thinking that the only people with true ‘disabilities’ are wheelchair bound?

What’s more, you made this call no more than 30 seconds before another call, for ‘business class or priority guests’. Literally the only person meeting the criteria for ‘special assistance’ (I.E. IN A WHEELCHAIR) did not have enough time to get through boarding before hoards of business people walked past / pushed through her.

When I finally got onto the plane (after lots of painful bumps and pushing), I realised that half of the plane was empty. When I requested to move to a completely empty row closer to the front of the plane, the flight attendant said that wasn’t permitted as the seats at the front of the plane were for Business class or frequent fliers.

I (thankfully) ended up with an empty seat next to me anyway, either because the person assigned to that seat didn’t show up or no one booked it in the first place. I requested a pillow for my comfort but, sorry, you guys don’t carry pillows on board.

What I realised was that the way for me to get a comfortable and / or pain-free flight would have been to pay lots of money. Then you would care about me! Apparently I was naive to think that a physical impairment might garner some compassion.

I can’t imagine what it must be like to deal with this kind of crap every day. This experience, though nothing like what people with disabilities must encounter, gave me some insight into how your company, and society at large, works.

So I encourage you to think about my experience and how it reflects you. I get that you are just running a business, but people with disabilities are just trying to, you know, live and meaningfully engage in their lives. I’ve learned that people with disabilities are more important than the fact that I’m in a rush, or that I’m impatient. You can learn that people with disabilities are more important than money.


A loyal customer