Chapter 2: Diary of a Disabled PhD Student
Posts 10-19: Reflecting on the present The Disabled Peoples Project and past experiences
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 explore 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 2 below contains Posts 10-19 (26.4.23-5.5.23) from my Diary of a Disabled PhD Student.
Chapter 2 Posts 10-19:
Post 10 - Getting distracted isn’t a bad thing - 26.4.2023
Today, I intend to do two biographies for my Disabled People’s Project or Disabled Actors Project. In these two projects, which form my PhD research, I do a biography lasting less than three minutes on Facebook, YouTube, TikTok and Podcast, which can be found here if you want to know more:
www.linktr.ee/disabledactorsproject
I aim to write three biographies a week over the upcoming months. So, due to various things this week, I planned to write two today. I didn’t do anything today!
Instead, I did the following:
I woke up and found it challenging to get going due to yesterday's busy day presenting and watching at my University Doctoral College Conference. From noon, I attended the second day of the conference again online. Seeing different research on diverse subjects was great, and I learned a lot.
I then emailed, WhatsApp and Facebook messaged a few people back and forth about different things, which helped me gain different perspectives of the same situation and solutions to some technological issues, which can save me time.
Sometimes, it’s good to be distracted as it can open our eyes to the obvious and save time in the long run by building human connections in our digital world.
Photos below: 1) Left: Emmerdale on 7.30 pm ITV, 2) Right: Salmon, veg with, of course, potatoes.
Post 11- Photo Competition Accessibility in the Home –27.4.23
Update: Part of my research methodology during my PhD was to submit to a number of competitions and publications. This was to 1) first explore one of my research questions: what do we mean by publication, especially in contemporary society and for people with disabilities (part of PhD award criteria is to be ‘worthy of publication’)? 2) To develop my writing skills 3) To use within my project if not successful for that publication/competition.
I submitted this one to a photo competition, the theme of which was barriers to diversity. I submitted these photos to raise awareness of disabled inaccessibility within the home. Other Diary posts delved deeper into this issue, affecting not just me in society but other disabled people, including statistics, reports, research, and newspaper articles/digital media creators who have highlighted this issue. I discussed my own journey, having to move out of my flat into my mum's home and waiting on the Disabled Facilities Grant, which has never arrived to date!
Below Photos: are photos taken around the house to show inaccessibility issues (from left); I can't get in and out of the front door with my wheelchair space, and I can’t get through doorways with one wheelchair, hence having another, which also inspired my talk, which formed another article called ‘Why have I got 3 wheelchairs?’, and ramp issues out the back. Stairs, when needed to go to the toilet quickly, are an issue, and not all disabilities are wheelchair users.
Post 12 - *Joanne (*name and distinguishing features changed) -27/4/23
For some reason, my mind wandered back to meeting Joanne in the hospital during one of my admissions for ulcerative colitis. This led me to write a post on my online Diary about her and later author a little article about her. That inspired me to start a series called ‘Tales from the Hospital Ward’ using my learning from the Creative Writing Class to write a fiction series based on real-life experiences, which can be found here, which I developed during my PhD: AKA The Disabled PhD Student Context: This was used for one of my online Facebook Diary of a Disabled PhD Student posts,
This helped me analyse the impact of showing disability and chronic Illness in different forms, i.e. Social Media V’s Articles V’s The Disabled Peoples Project V’s Creative Writing. Not only that, but using digital media to publish creative writing places more emphasis on the accessibility of diverse publications. i.e. which platform do people gravitate to with statistics?
Post 12 Link to Tales from the Hospital Ward: which means the researcher explores their lived experience within a wider social issue. I explore non-fiction autoethnography in relation to disability and chronic illness on my research website,
, which means the researcher explores their lived experience within a wider social issue. I explore non-fiction autoethnography in relation to disability and chronic illness on my research website, The photo below shows a wheelchair and wheelchair not fitting through existing house doorways with multi-layered difficulties getting adaptions, which, on paper, reminded me of Joanne. 3 and 4 right of food I’ve had during the hospital stay as an inpatient for Ulcerative Colitis
Post 13 - Calling a Spade a Spade – 27.4.2023
Initially, I wrote reflections on this post about this concept in a creative writing approach, which I developed through editing and published here:
Post 13 Link to article ‘Calling a Spade a Spade’ (to add)
This inspired me to develop this Tree Theory concept:
Tree Theory Article: https://medium.com/@disabledphdstudent/tree-theory-99a5e1cc6730
The photo below of Spade
Post 14 - ‘Winners Write History' – 28.4.2023
A friend at creative writing class said ‘’well, there is a saying…… ‘winners write history.’ ‘’
I’ve never heard that saying before. He’s bl**dy. The winner will get their history taught. What about people’s history that doesn’t reach the books?
That’s one reason why I love the online world so much—the home of the underdog. Diverse backgrounds can share their story. Access and sharing for all. Well, to those who can afford and know how to use the gadgets. It started with a conversation about Rhubarb and how crops used to be fertilised with real-life history piecing different people's parts of the jigsaw puzzle together.
The photo below of rhubarb
Post 15- Whitney Houston – 28.4.2023
My mind wanders back to 1992 and 2012 when I saw Whitney on TV tonight.
Butlins holiday. At the time, they did a single-parent deal, which I reflect more in my article the Dominican Republic 1996, which explores whether parents should be fined for taking their children out of school for holidays. Through that article, I raise awareness that holidays can be an educational experience and the disadvantage working-class people face if taking holidays during school holidays due to inflated costs and other aspects surrounding disability.
Anyway- Butlins gave Mum an opportunity to take me on holiday for the first time. The second year, we went to Bognor- at the time, they had a place where you could pretend to sing and have a VHS recording of you doing it with a clever background. I still have the NHS recording somewhere of me trying to mimic Whitney Houston’s ‘I Wanna Dance with Somebody’ and Mum doing Stevie Wonder, who ironically has a disability. When I was later working and earning money, I took Mum on a cruise and saw Whitney’s house in Barbados. I’m glad I did such trips back then.
The photo below of the late Whitney Houston on TV.
Post 16 - Sunday The essence is in detail – 30.4.2023
Dad came round for dinner. We had Red Thai Curry with coconut rice. Although I’m sure Thai natives would be insulted that I call my version a Thai curry as it was a bit of a mixture and not so good as the ‘real McCoy’ (authentic). This version is not spicy and mixed with Quorn (vegetarian soya) and broccoli. My parents love me so much that they are willing to try vegetarian food. No matter how much I try, I can’t cook rice well. I even follow TikTok tutorials for rinsing the rice. I have a rice cooker kindly given to me as a present by my friend Fahd, who felt sorry for me about the situation. Despite all that effort, my rice never turns out as good as my potatoes. But my parents ate it regardless, out of love rather than taste. As my earlier Post 6 (23.4.23) explored, potatoes are cultural, i.e. the importance of potatoes to working-class English history. I can cook potatoes well, maybe because of this, but not so much rice as not have that history with it.
It's a bit different than a traditional Sunday roast! But it allows parents to have a cooked meal once a week, considering how much they do for me. It’s nice even though it takes a lot of effort and has physical consequences in many ways, which I discuss in my Medium articles, such as here ‘’List of things that affect me going out,’’ which I am currently up to number 93 and growing!: https://medium.com/.../list-of-things-that-affect-me...
Cooking this meal makes me feel like I’ve contributed somehow, which keeps me going. I would think nothing of doing that every day before disability and still have ‘Spoons’, which I talked about in Spoon Theory's other posts. I saw a TikTok post where a consultant affected by long covid says she must do three P’s:
Prioritise, Plan and Pace
TikTok video where that’s from a Consultant in Infectious Diseases TikTok.
This is indeed true with my day-to-day stuff since chronic Illness. Perseverance may make the situation four P’s. Either way, I thought the P’s discussed were similar to the Spoon Theory. Maybe we all relate to different things; perhaps she didn’t know about Spoon Theory. Although there is much discussion about misinformation on social media, we can't forget what a great place it is like to gain other people's perceptions from their experience and disbanding education.
I remember years ago as a kid. Mum said, ‘Don’t tell them you’ve had chips for Sunday dinner at school’’. At the time, it was looked down upon to have anything other than a traditional roast on a Sunday. Now, anything goes; we can’t forget the positives of diversity.
The photo below of ‘Thai’ Curry Sunday dinner
Post 17 - The Realities of Disabled Student Allowance Part One (or Episode One) – 2.5.2023
This post ended up being clustered together to form part of a series, ‘DSA Saga,’ which had more impact when together. I call it The DSA Diary Series.
Disabled Student Allowance is available for Disabled Students. But ‘Allowance’ is a play-on word because it's not an allowance. It's equipment or items needed for your study at university, which you would not have had if it wasn’t for your studies. Clustering the episodes together produced an impact of showing real experiences of accessing.
My DSA became a series in a stand-alone article later- DSA Diary series!:
https://medium.com/@disabledphdstudent/dsa-diary-9f8115beea99
Photos below: 1) left ’office’. 2) Right ‘real office’
Post 18 - The 6 P's with Chronic Illness and Disability? – 4.5.023
I reflected more about the 3 P’s highlighted in Post 16 regarding chronic Illness I came across. She says since having Long-Covid, she lives her life now by the 3 Ps -
Prioritising,
Planning and
Pacing
I thought these 3 P’s were relevant to many chronic illnesses and disability conditions, not just Long-Covid. For example, I haven’t got Long-Covid but other chronic illnesses and disabilities. One is Fibromyalgia, which has similar characteristics as those with Long-Covid. My Fibromyalgia was brought on by physical trauma from my Ulcerative Colitis. Textbooks say Fibromyalgia is brought on by physical or mental trauma. Indeed, this is the same for Long-COVID, where blood results appear okay, but the body is so damaged by COVID-19 that it causes Fibromyalgia symptoms. So why aren’t Long-Covid people diagnosed with fibromyalgia or ME? Maybe we need more time to figure it all out and do some research.
I reflect that I use the 3 P's with my Fibromyalgia and other conditions. But I didn’t have the language through this definition to say what this gives.
The 3 Ps are an excellent strategy when dealing with bureaucracy and resource issues of organisations, e.g., getting a doctor’s appointment and getting there. I wrote elsewhere that there appears to be an added layer rather than just bureaucracy. Also, an added layer to the Structural Violence theory that David Graeber talks about is reflected more in the thesis I submit. But that’s a story for another time!
In the other day's post 16, I wrote that maybe there is a fourth P in ‘Perseverance’ as those with disabilities persevere through all kinds of difficulties. There may also be a total of six and maybe more!!
That other P being ‘Positive.’ We must be positive in so many ways. We also must be ‘Patient’ with our bodies and the organisations we deal with.
So maybe there are the 6 P’s, not just the 3 in the video? Which could be :
Prioritising
Planning
Pacing
Perseverance
Positive
Patience
Original TV clips that the 3P’s are discussed on the @BrokenBattery page on TikTok: a Consultant in Infectious Diseases
the
Below is a photo: a screenshot from the Broken Battery public TikTok profile video link given above. In this TV clip, Dr. Xand talks with a long-time COVID survivor who works in medicine.
Post 19 - Black Bags follow *Sophie (names and distinguishing features changed) – 5.5.2023
I watched a TikTok video by Slaney, who shares her experiences of being in care in the U.K. (public profile). She’s hopefully going to write a book. I hope she does. Maybe she could include the links to her Vlogs in the book as there’s something about the oral storytelling- when it’s delivered well like hers! I feel her book would be very educational for the care system. She talked in a post about having to use black bags. She’s roughly in her 20s, so care for her wasn’t that long ago: TikTok
.
The number of comments sharing related stories was staggering and heartbreaking.
My mind wanders back to *Sophie (name changed). She influenced me to work with children in care later. This post developed into a creative writing article published online, which helped assess the impact of showing disability and chronic Illness through that method.
Link to Substack Sophie Article: The above photo is credited to Polybags. Context: This was a post from my Facebook Diary of a Disabled PhD Student way back in May 2023, which forms part of my PhD thesis. The post is now a stand-alone published article below. Post 19—Black Bags follow *Sophie (names and distinguishing features changed)—
The photo below is from the public TikTok profile of Slaney on the above link. She currently has 76.7K followers and 1.2 million Likes, which shows the power of social media for impact and her raising awareness of growing up in Care.
