Chapter 31: Diary of a Disabled PhD Student
Posts 300-309 -Exploring diverse autoethnography formats with disability and chronic illness (13.12.23- 20.12.23)
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 31 below contains Posts 300-309 13.12.23- 20.12.23) from my Diary of a Disabled PhD Student.
Chapter 31 Posts 300-309:
Post 300- The government want more disabled people in work, and the health crisis is worse than ever, but they don't have a disabled minister - 13.12.23
Petition to re-instate disabled minister below
Post 301- Mr Motivator - 16.12.23
The first thing I saw when I woke up was Mr Motivator on TikTok. I had to check that I hadn't been teleported back to the 90s like a Dr Who scene. I can't believe I had the same number of viewers the other day live streaming my guest speaker talk on TikTok as the only Mr Motivator. I used to love him on GMTV. Bring back Mr Motivator on our screens!
Mr Motivator looks unusual with his colourful leotards. He had the guts to stand out. That's the Motivator character and a name representing his identity. Motivator has a niche identity, and people love him for it. Mr Motivator encourages all backgrounds to be energetic and colourful regardless of age and background. Don't be afraid to stand out. Don't be worried about 'not fitting in'. Mr Motivator's positive energy shows these aspects are a strength.
Post 302- The Unlikely Medusa connection with my PhD research- 19.12.2023
I published a new Conference Review article on Medium with a difference using autoethnography. The conference review article was inspired by attending a recent great conference by Professor Susan Deacy and linking the unlikely connection of Medusa with my PhD research.
Post 303- My Eccentric and Eclectic Use of Theory within PhD Research 19.12.2023
I published an article on Medium, which I explored further in my PhD thesis. Don't let Theory be boring. Relate Theory to practice!
Post 304- The Phone Charger: From Me to You - 19.12.2023
An Episode of what has become my DSA Daily Rant Series
https://medium.com/@disabledphdstudent/the-phone-charger-me-to-you-15502b4d39f5
Post 305- Proof Reading Episode of DSA Daily Rant Series -19.12.2023
As discussed, DSA is a Disabled Student Allowance. Still, no money is ever passed onto the student, so it is equipment supplied to the disabled person after form filling and assessments, not money, to clarify.
I will collate all my DSA Daily Rant episodes into one article and put a link soon. This episode focuses on Proofreading, which was discussed in an earlier episode.
DSA no longer funds Proofreaders, but this isn't to save money, as they spend extra money on Study Support Workers. For some reason, the Study Support Officers can no longer provide written feedback (a long story in another episode), as they did historically. This places a disadvantage on disabled students. However, my Study Support Advisor is excellent.
In October 2022, I mentioned in PhD supervision that DSA can't fund proofreading, but it is a disability need. I was advised that there could be money 'in the budget' for a proofreader, which is allowed in regulations and 'not to worry'. I intermittently put it on the agenda, but with time constraints, it never got talked about again. I put it on my Second Year Review Report in June 2023. Again nothing.
In October, a new supervisory team member put the organisation of the practicalities of the Proofreader on the agenda. I was told in Supervision at the end of October 2023 that a proofreader has yet to be agreed upon, but a case could be put forward if I get more quotes and put forward a case. So, I spent time and added labour doing that. Subsequent Supervision at the end of November 2023, 'we will continue to explore options'. Further email December 2023 to me: 'We are continuing to explore options'.
So, over a year later, yet again, the disabled PhD Student faces this 'limbo land' despite being organised and doing what we need to do, chasing matters up. We are still left with this 'Making Sense of Stupidity', as David Graeber, whom I reference a lot in my work, says.
Also, I reference Intersectionality, Spoon Theory and Crip Theory a lot in my research. I'm even out of spoons doing this post about it!
I will end up self-funding the Proofreader on top of my self-funding research. In any way, disabled people always find solutions on a shoestring, which is a theme of my research! The Enlightenment Philosophers I also reference in my research relate well to the modern world in that disabled people are good at finding innovative solutions, as reflected by analysing biographies in my Disabled Peoples Project part of the research.
So even though Disabled Students UK conducts valuable research, a report recently highlighted the need for universities not to rely on DSA/Accessibility Centres and only provide things funded by DSA. This post is an example of the 'Added Labour of the Disabled PhD Student' as Stephanie Hannam-Swain puts it. It is not only still in force but also further disadvantages intersectional PhD student backgrounds and is continuing despite much reporting and valuable research. Hopefully, things will improve, and it will be great to hear about positive examples. Positive practice examples are the way forward as we can all learn from good practice and the bad 'Ableist' or 'Dis-Ableist.'
https://medium.com/@disabledphdstudent/dsa-diary-9f8115beea99
Post 306: An article which includes a collation of my online Diary posts about Disabled Student Allowance DSA using autoethnography 20.12.2023
Post 307- Twenty-One Days of Tinder - 20.12.2023
If you want a laugh over Christmas and a break from the bleak news, here is my free unconventional poetry book on Substack called The Twenty-One Days of Tinder. Substack is my autoethnography 'creative writing' hub full of fiction disability stories based on real life, unconventional poetry and publications that don't fit within my other non-fiction autoethnography research approach. Substack forms part of www.linktr.ee/disabledphdstudent under the 'articles I have written during PhD' tab
https://open.substack.com/.../p/twenty-one-days-of-tinder...
Post 308- Tales from the Hospital Ward Series Launch- 20.12.2023
I explore the impact of showing lived experience of chronic illness and disability within my PhD research. I specialise in the autoethnography method, which means the researcher explores their lived experience within a wider social issue, disability, and chronic illness. I have launched Substack, my creative writing hub, to explore the more creative writing side of autoethnography. The fiction of unconventional poetry and other publications that don't fit in with Medium or ResearchGate, which are more the factual side of autoethnography. Tales From The Hospital Ward is a fictional series based on real-life experiences. This is Episode One:
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Post 309- Irony of DWP staff facing difficulty with their disabilities
