Chapter 40: Diary of a Disabled PhD Student
Posts 390-400: This is Me (3.7.2024-14.9.2024)
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. This Chapter 40 has a special edition of one extra Post, which marks the end of the Diary at Post 400. 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 40 below contains Posts 390-400 (3.7.24-14.9.24) from my Facebook Diary of a Disabled PhD Student.
Chapter 40 This is Me
Post 390-399
Post 390- Never Thought I Would be Glad for Bad Weather- 3.7.24
The weather on TV said it's going to rain and be miserable. I'm so glad I am not so resentful, chained to my bed trolly, writing my thesis
#disability #ulcerativecolitis #PhD #university #chronicillness #disabledphdstudent #diaryofadisabledphdstudent #phdlife #weather
Post 391- Strange Irony and Contradiction- 3.7.24
From my private Facebook yesterday. Kind of sums it all up
#disability #disabilityinclusion #chronicillness #university #PhD #phdlife #disabledphdstudent #diaryofadisabledphdstudent #life #weather
Post 392- Childish Humour- 4.7.24
This came up in my private Facebook memory from a few years ago. Which is better, the ruler or rock, though, is an afterthought- both have their purposes in the right environment!
Post 393- A Different Kind of July 4th- 4.7.24
In England, women couldn't vote until 1918, when it was limited to those over thirty who owned property. It wasn't until 1928 that women could vote equally as men following the Suffragettes campaigning—less than 100 years.
I'm lucky to be able to vote, so I made the effort even though it was difficult to get. My polling station is also very disabled accessible, so again, I'm privileged as there's been much coverage on social media about problems with disability access at polling stations.
Most of all, I made an effort for disabled people all over the country who have been demonised. I'm not saying it will be perfect with Labour, as I've discussed many difficulties under Labour, but there will be hope. Someone on TV the other day said people want 'radical change'. Will the current Labour do that? Not so sure. But there will be hope instead of the government making disabled people feel grateful after they've ripped their lives apart? Only time will tell, hopefully not worse.
#politics #DisabilityPrideMonth #disabilityawareness #disability #women #vote
Photo below: polling station
Post 394- Screw Found- 6.7.24
In post 284 on November 21st, I said that a screw came out from my bed table, which is kind of an ability that I got a screw loose. I lost the screw after putting it in a different place than I normally would when these types of things happen. This led to months of a rocky bed trolly- I had to balance the laptop on the far right because it was tilted down to the left, and any further to the middle or left would have meant the bed had crashed.
Anyway, found the screw. The bed trolly is now restored. I now have a level robust table. I can now move the laptop anywhere on the table, creating more room for other things on the right.
Photo left post 284 about the screw being loose in November, some eight months ago. Right- The table and balance are restored now, making them far more comfortable.
#screwloose #DisabilityPrideMonth #disabilityawareness #disabledphdstudent #diary #diaryofadisabledphdatudent
Post 395- Bartek Dabrowski- 14.9.24 Part One
Although buskers on the surface may not appear related to disability, the whole thesis of ‘delving deeper’ shows the relationship and symbolism between the busking ethos and disability.
A golden thread of periodically seeing Buskers during my research symbolised many concepts about my PhD, specifically discussed in Chapter 6 (section 6.2).
The thesis is split into 5 Parts- At the start of each part, I will put a YouTube link to a different song by Bartek. Please listen to it if you can.
Influenced by Diary:
Post 22- Things and People on Your Doorstep - 9.5.2023 Part One
Post 32- Leicester City Centre- Buskers, Hare Krishna’s, and Buildings- 27.5.23
Post 159- Bartek Dabrowski- 29.7.23
If you don’t get a chance to see Bartek busking live, please check out his amazing work.
The power of no words and music has with evoking emotions – the guitar and him.
Bartek Dabrowski - Wake Up @ Edinburgh Fringe Festival (Short)
Wake Up Orchestra video:
Bartek permitted me to share his music within my PhD thesis; full references to his work can be found in Chapter 6 and the Bibliography.
Below Picture: Taken by me in Leicester city centre of Bartek Dabrowski 26.5.2023
Post 396- Bartek Dabrowski- 14.9.24 Part Two
The Thesis is split into 5 Parts. At the start of each Part, I put a YouTube link to a different song by Bartek Dabrowski. Please listen to it if you can.
The link below is to a TikTok vlog I shared in my Diary (Post 32- Leicester City Centre- Buskers, Hare Krishna's, and Buildings- 27.5.23). If you can access TikTok, you will hear the faint Hare Krishna tambourine and humming sound (round the corner) whilst Bartek was playing at the Clock Tower, a key monument in Leicester City Centre, on 26.5.2023.
DisabilityDiary TikTok:
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Bartek permitted me to share his music within my PhD thesis; full references to his work can be found in Chapter 6 and the Bibliography.
For Part Two of the thesis, please listen to Bartek's following song on his YouTube station if you can:
Journey in Poland by Bartek Dabrowski, 18 September 2017:
Below Photo: Screenshot of Journey in Poland Video credited and permitted to be shared by Bartek.
Post 397- Bartek Dabrowski - 14.9.24 Part Three
The thesis is split into 5 Parts. At the start of each Part, I put a YouTube link to a different song by Bartek Dabrowski. Please listen to it if you can.
The link below is to a TikTok vlog I shared in my Diary from an archive of the TV clips I watched during my PhD. This video is from a documentary TV presenter Ben Fogle did about people ‘living off the grid,’ and one of the 'interviewees' also busked. Ben Fogle said, '’Behind every person like that (busker), there is a story’':
DisabilityDiary:
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At the start of my Diary process, this following link is to the first Medium article I published, called "Why Ben Fogle Taught Me to Re-evaluate the Research Method I Use Autoethnography" on the 9th February 2023:
https://medium.com/.../why-ben-fogle-has-taught-me-to-re...
So Ben Fogle has much to do with the golden thread of this busker story, for reasons outlined in the thesis, particularly Part Three.
Bartek permitted me to share his music within my PhD thesis; full references to his work can be found in Chapter 6 and the Bibliography.
For Part Three of the thesis, please listen to Bartek's following song on his YouTube station if you can -
‘Brav’e, by Bartek Dabrowski, YouTube, 30 August 2021:
Below Photo: The screenshot of the brave video is credited and permitted to be shared by Bartek.
Post 398- Bartek Dabrowski - 14.9.24 Part Four
The Thesis is split into 5 Parts. At the start of each Part, I put a YouTube link to a different song by Bartek Dabrowski. Please listen to it if you can.
The word Euphoria always reminds me of 90s dance (trance) songs, which formed a trilogy of CD collections, Euphoria, like ‘’Now’’ music CDs. My mind always wanders back to dancing or sweating the night away in a carefree era of spending all that you have; back in the day, was £20 a night in a trendy club with the smell of kebabs leaving down the street trying to get a taxi and still up at the crack of dawn for the day ahead. Last year, the 10th International Conference of Autoethnography theme was 'Dances with Experiences', and I was lucky enough to present 'How Will I Dance since Chronic Illness and Disability'. I was going to focus on nightclub disability access as I was well out of the nightlife scene since disability and the whole theme of 'nightlife' seemed a daunting task compared to daylight, maybe due to age as much as disability. As I explored the experience, I soon realised it was how to get there! 'How the heck did I get there?' followed a series of talks I did, each with a different story. 'Getting there', although the physical form, also mirrors an analogy to a 'successful position.’
I wrote a presentation paper about the experience - 'Doing Conference Presentations Differently, 18.7.2023', Medium:
https://medium.com/.../draftdoing-conference-delivery...
This was followed by the subsequent year at the same conference - this year with a theme of 'murmuration'. My presentation for this year was an extract from 'The Madonna Method' that I developed during my PhD, riding out the fear, which shows the murmuration from the previous year!:
Conference Paper: "11th International Conference of Autoethnography" Presentation titled: "Will I Ever Finish this Bloomin PhD: The Madonna Method Help?" 20.8.2024, Medium:
https://medium.com/.../conference-paper-11th...
Anyway, my mind wanders back to Euphoria by Bartek Dabwoski, which reflects many aspects of Part Four of the thesis -
‘Euphoria,’ by Bartek Dabrowski, YouTube, 15th July 2023:
Below Photo: The screenshot of the euphoria video is credited and permitted to be shared by Bartek.
Post 399- Bartek Dabrowski - 14.9.24 Part Five
The Thesis is split into 5 Parts. At the start of each Part, I put a YouTube link to a different song by Bartek Dabrowski. Please listen to it if you can.
Dabrowski plays a song here called Song of the Golden Dragon variations, Reflection, New Harmony," which he says is "Inspired by Internal Flight and Song of the Golden Dragon played by Estas Tonne. One of my biggest inspirations." (29.8.2019, Bartek's YouTube Station:
)
Reflecting through Bartek's videos during Five Parts of the Thesis, I see a story resembling the research- an inner and outer journey. The importance of inspiration and identity has been the golden thread. We may explore far and wide, but what we seek is sometimes right in front of us at home. The home is within us.
For Part Five of the Thesis, please listen to Bartek's following Song on his YouTube station if you can -
'Loving Life' by Bartek Dabrowski, YouTube, 4th November 2023:
Below Photos: A screenshot of the 'Loving Life' Video and 2nd is from the earlier 'Euphoria' video from Part Four, where Bartek and his friend reach the top of a mountain. During my PhD and an online conversation with PhDhardtalks @phdhardtalk on TikTok, I joked that we should climb Mount Fuji when we finish our PhD. We have metaphorically now climbed that mountain, which those with disabilities, especially from working-class backgrounds and women, are disproportionately seen on such examples in the media. The male, ex-military or ex-paralympian is often viewed as the 'strong one'. With Nick Wilson @nickwilson on TikTok showing how he is the first person to climb Mount Everest in a specialist wheelchair built for the occasion in June 2024, we all have hope in ‘climbing that mountain’. Photos credited and permitted to be shared by Bartek.
Post 400 - This is Me - 14.9.2024
‘Cheers’ End of the PhD Journey’: https://medium.com/.../dedications-cheers-the-end-of-the... ‘’Don’t Let the Bastards Get You Down’’ (Rihanna, YouTube, 27 August 2011)
I didn’t intend to end my PhD with 400 Diary posts, and this ending in Chapter 40. But the numbers 4 and 9 were significant during my PhD. For example, going to the musical ‘Diary of Adrain Mole’ at the Little Theatre, Leicester, in 2022 to mark the 40th anniversary of the book by Sue Townsend was a huge inspiration for the PhD project. I also started my PhD at age 40, which was delayed a year due to a long hospital admission and operations. This year marks my 20th anniversary at the same university as a student, and I also worked in social work for 20 years which equals 40!
As you will see with my thesis, I am not particularly religious as Leicester is fortunate to have a Sikh Gurdwara, Hindu Temple, Mosque, Synagogue, Catholic Church, Pescatarian, Anglican and other religious places within close proximity to one another in our multi-cultural city. However, I have been looking into the Bible to analyse the relationship between language, disability and storytelling. Easter is told in the Bible as making the journey across the desert for 40 days and 40 nights, barely having any food and drink, which inspired Lent- which modern day is often translated as giving up something you enjoy most so you can enjoy it on the 40th Day, Easter. Ironically, I had a bland special diet, which was liquid only due to one of my health conditions, ulcerative colitis, during my thesis ‘writing up’ period. Lent symbolises a time of reflection, fasting, and abstinence and is rooted in the Bible's use of the number 40 to represent testing, trial, penance, purification, and renewal. Metaphorically symbolising my PhD journey.
I also did not intend to end the Diary today, on the 14th day of the 9th month, but here we are. As an ‘accidental academic’ adventure to pastures is new, my PhD journey shows that despite the struggles and sacrifices, hopefully, I will spread hope to diverse people undertaking higher qualifications to PhD level or achieving success in your specific interests.
I also did not intend to NOT show ‘me’ in any of the Diary posts. Maybe it was in fear of cyber security in our ever-increasing ID theft world that people would see me in the street not liking what I've written or just perhaps proving a point that autoethnography, the research method I specialise in, goes far beyond the ‘I’.
So, in the future, after my PhD,
This is Me
Lyrics ''The Greatest Showman'':
''I am not a stranger to the dark
"Hide away, " they say
"'Cause we don't want your broken parts"
I've learned to be ashamed of all my scars
"Run away, " they say
"No one'll love you as you are"
But I won't let them break me down to dust
I know that there's a place for us
For we are glorious
When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown 'em out
I am brave, I am bruised
I am who I'm meant to be, this is me
Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me.''
Lyrics to The Greatest Showman Cast – ‘This Is Me’ (Official Lyric Video). Atlantic Records, YouTube, 2018:
Full circle to Rihanna at the beginning of the Diary Post: Calvin Harris, Rihanna - ‘This Is What You Came For’ (Official Video) ft. Rihanna (Calvin Harris YouTube, 2016):
I came for my PhD.
I will leave with my PhD.
This is what I came for.
Photos below: I have posted a lot about my writing environment during my PhD, including my ‘office,’ AKA my bed, and also about the windows and the curtains that are shut. I include one with the curtain open on the 2nd photo!
