Chapter 36: Diary of a Disabled PhD Student
Posts 350-359 - The wheel to completion (20.4.24-6.5.24)
Context: These posts are found on my Facebook Diary of a Disabled PhD Student
I collated posts from my Facebook Diary of a Disabled PhD Student page into a Word version. A selection of these Facebook posts are in the Word version of my PhD thesis. Here, on this ‘The Diary of a Disabled PhD Student’ part of my Substack website, I collate all my Facebook posts so you can see in chronological order from when I started the Diary on 20.4.2023. Each Chapter is 9 Diary Facebook posts in chronological order. I have given the chapter a theme underneath the heading title above. There is a photo at the end of each post related to the discussion within that post. My Substack also hosts 1) The Disabled Peoples Project and Disabled Actors Project, which show biographies of different people with disabilities on different social media platforms (I am the creator, editor and contributor) and 2) The Creative Writing Hub. I reference these aspects within my Diary along with my Medium articles and Talks during my PhD. My full research website where these components can be found is www.linktr.ee/disabledphdstudent. My Diary posts reflect on different aspects of my research website together with reflecting on daily life from having disabilities and chronic illness, my experiences during a unique and unusual period of my life doing a PhD, along with other snippets of my life not related to either! I also discuss various digital media creators, journalism and TV sources within posts along with interviews done during my PhD period.
N.B I say ‘unique and unusual’ because only 2% of the UK population have a PhD*, with little research surrounding the intersectionality of those who have completed doctorates. However, indicators* suggest few disabled, working-class people complete a PhD out of them 2%. When I graduate with my PhD will mark my 20th anniversary of being a mature student at the same university. As a working-class middle-aged woman with many disabilities and chronic health conditions from a family of intergenerational struggles, I explored during my Diary of a Disabled PhD Student how the heck I got to this point. With the hope to break down the ‘Glass-Ceiling’ for others who face struggles wanting to pursue their dreams, whatever those dreams may be.
*current figures only record up to age 64!
Chapter 36 below contains Posts 350-359 (20.4.24- 6.5.24) from my Diary of a Disabled PhD Student.
Chapter 36 Posts 350-359:
Post 350- changing times of TV shows - 20.4.24
Claire King plays Kim Tate and was on TV a few weeks ago. Coincidently, I created a biography of her on the Disabled People and Actors programme as she has chronic rheumatoid arthritis. She told the presenter that most people like watching catch-up nowadays and soaps, not in ‘real’ time. The soaps used to work in sync with each other. For example, Coro Street would never clash with Eastenders and not with Emmerdale, but now they do, which is pretty annoying. Eastenders are available early, so I usually watch them at 7 pm, followed by the soaps on ITV. Hollyoaks ended its 6.30 pm channel four late last year after 20 years. It’s now on E4 at 7, which firstly shows that people’s days are getting longer and a rise in catch-up.
Now, when it comes to Casualty, I’ve watched it in real time since I was five years old, some 40 years ago. Now, it’s available early. Today, we watched it at 5.30 pm due to the new Britain's Got Talent series tonight. It just didn’t feel the same with the sun gleaming on the screen.
We are using more catch-up, and our days are getting longer.
Post 351- My earlier Diary post called 'Joanne' is now published as an article- 22.4.2024
This story formed Post 12 of Diary of a Disabled PhD Student on 27.4.2023, nearly a year ago. I reflected on a hospital experience from the past with another patient- I anonymised her name and characteristics for the story. It's now a published article on Substack:
, AKA The Disabled PhD Student Context: This was used for one of my online Facebook Diary of a Disabled PhD Student posts,, AKA The Disabled PhD Student Context: This was used for one of my online Facebook Diary of a Disabled PhD Student posts,
Post 352- The first wheel is to take one- 23.4.24
So I keep different colour journals to keep notes for different aspects/categories of things, e.g. I have an interesting cover of Love Heart Sweets for the training/conferences that I attend during my PhD, a pink one for daily notes, yellow for PhD supervision, orange for study support with my dyslexia/dyspraxia. Whatever the colour, I always have two things: 1) Hardback (as often I can’t fit my wheelchair under tables, so it has to be flexible for any environment 2) Abook mark so I don’t spend ages trying to locate the last page when opening. I use them with this online Facebook page, my TikTok disabledphdstudent @disabilitydiary, and my iPhone notes.
I needed a new journal book for something exciting, which I will discuss more in the summer. So, I ordered a posh Oxford and Red one to appear serious. Most importantly, it’s hardback and got the bookmark!
Anyway, the journal arrived yesterday evening in time with 5 minutes to spare. Amazon delivered it, and who has become more regular than the post person? I ripped it open to find this on the front cover:
‘’The first step is to take one’’.
I’m not sure how I feel about this!
My initial reaction was, ‘Change the step to the wheel.’
Instead of persevering, I try to adapt and conform to the ‘first step.’ Maybe thinking out of the box brings something new. A change can be a good thing.
‘’The first wheel is to take one.’’
It doesn’t have the same ring to it. What caption could I choose instead?
Post 353- Hospital Waiting Room Conversations - 24.4.2024
I was publishing Part Two of 'Hospital Waiting Room Conversations' when I realized I still needed to introduce and share the series in my Diary!
So, for those of you who follow my PhD project, I am exploring different forms of autoethnography - sharing lived experiences of chronic illness and disability. I set up the Disabled People/Actors Project (DPP/DAP), a biography of different people with disabilities on social media platforms, incorporating the interviews I did during my PhD within the DPP/DAP. I reflect on the DPP/DAP in Diary posts.
I also reflect on daily life in the Diary posts, which include attending many hospital appointments! I have published articles (including being in an acclaimed art exhibition even though I'm not an artist!) and little narrative/creative non-fiction posts about hospital/medical experiences here. Also, Vlogs on TikTok.
As some of you know, I was also exploring creative fiction autoethnography. I shared my 'Tales from the Hospital Ward', a fiction series based on real-life events of being a patient on a gastroenterology hospital ward. Anyway, I also published an article called 'Hospital Waiting Room Conversations' Part One, a creative non-fiction article series of conversations I've had while waiting in hospital waiting room outpatient appointments. I anonymise their names and characteristics for ethical purposes. I find these conversations fascinating because, half the time, we don't even get to know each other's names, but somehow, the space allows us to find out about each other's life stories quickly.
Below the link, here's a recap and sharing of Part One of the Hospital Waiting Room Conversations. I'll share Part Two once it's published.
https://open.substack.com/.../hospital-waiting-room...
Post 354- kneading the bread- 26.4.24
From my private Facebook page but related to my PhD!
Post 355- Hospital Waiting Room Conversations Part Two- 27.4.2024
Some of you will know I specialise in autoethnography, which means exploring the researcher's lived experience.
I have been exploring new ways of using the method, for example, through The Disabled Peoples Project DPP (www.linktr.ee/disabledpeople) and the Disabled Actors Project DAP ( www.linktr.ee/disabledactorsproject ). I share interviews there and people's digital media work here on my Diary page, which will form my PhD thesis.
I also write articles for Medium and Substack and others for my PhD research. I developed a fiction series called Tales from The Hospital Ward based on real-life patient experiences in gastroenterology. I also have created a factual series called 'Hospital Waiting Room Conversations' based on real-life conversations as a patient in hospital outpatient waiting rooms. Below is Part Two of Hospital Waiting Room Conversations- the article initially has the 'conversation', followed by 'reflective thoughts from that conversation', then a 'summary' and 'references'. References include a range of journalism, charities and digital media sources discussed in the article, showing the benefits of the media in sharing lived experiences of Cancer.
https://open.substack.com/.../hospital-waiting-room...
Post 356- sometimes you got to laugh at yourself- 29.4.24
So, I played around with a CapCut (editing app) template for TikTok
I posted the below
Nearly 20 years constitutes a long time; I think
https://vm.tiktok.com/ZGex2XQyr/
Post 357- DSA Call for Evidence for non-medical helpers- 1.5.2024
This hasn’t been advertised much; I only found it by fluke. It is well worth giving feedback, and it is appreciated that the government is acting on this issue and gaining feedback.
n.b DSA stands for Disabled Student Allowance, which students with disabilities/chronic health conditions who face extra costs which they wouldn't have if not disabled can apply for (contrary to the words, it's not an allowance- they assess and provide the student with equipment or other).
Post 358- Chai tea too- 2.5.2024
It’s not just coffee I like (n.b previous posts). I love Chai tea, too!
It gets me through the afternoons writing my PhD.
The photo below shows chai tea in a cup on the desk with a diary as a mouse mat.
Post 359- The fly- 6.5.24
So, on Monday's bank holiday, I’m writing my bloody PhD at 8.30 am. I am having my religious coffee and four bananas. The fly starts circling. I’m beginning to think, am I going a bit Kafka? Kafka's Metamorphosis is a book about him turning into a fly but is believed to have represented his mental state. But no, this, unfortunately, is a real bloody fly which keeps appearing. I try my best to get it. I can’t quite reach it. Then, this morning, he heads for the banana. I got my Post-it notes and squashed them on the banana. I felt sorry and bad about what I accidentally found out yesterday by TikTok digital creator Father Andrew Mumby was being ‘lamented,’ meaning deep sorrow and grief. Not because I killed the fly- I remember someone saying, ‘You wouldn’t hurt a fly.’ Well, I have. I’ve killed the bugger. It’s quite difficult to hurt a fly compared to a person because they fly off so fast. Sometimes, you must wait for the pesky bleeders to go to the fruit before you can squash them rather than chase your tail. Was it either killing it or being bitten or falling dead with malaria or something, so the survival of the fittest? N.b. For some reason, these are biting flys.
Kafka metamorphosis:
Father Andrew Mumby talking about Lament:
https://vm.tiktok.com/ZGeQjh49M/
Update 17.5.24: This is a Haiku poem I did whilst at creative writing class last week (a Haiku is a Japanese poem with three lines- the first line has five syllables, 2nd line 7 syllables and 3rd line 5 syllables:
Fly on the Bus (died)
Fly in college cafe (died)
Flies at uni (died)
