Chapter 39: Diary of a Disabled PhD Student
Posts 380-389: Authenticity and Accessibility (28.5.24-28.6.24)
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 39 below contains Posts 380-389 (28.5.24-28.6.24) from my Facebook Diary of a Disabled PhD Student.
Chapter 39 Authenticity and Access
Posts 380-389
Post 380- Improvising with the TV- 28.5.24
Wherever I go, I find a way to have the TV on
The photo below: Good Morning Britain on the laptop
381- Repair mode- 1.5.24
It's been an intensive week, and I can talk more about it after Wednesday.
I spent 3 unproductive hours at the laptop this morning. I just had some boiled eggs and avocado today (still on the Modulife for ulcerative colitis) whilst watching 3 Musketeers on UK Play TV.
The photo below: 3 Musketeers courtesy of UK TV
Post 382- How abusive behaviour can spread like a traffic jam-4.6.24
Yesterday, Dad helped me go to the dentist. All that has followed would know I have written a lot about my 'teeth journey' since chronic illness. But it was just a routine appointment yesterday. I was relieved that no work was needed this time—£ 50 down, but money well spent on this dentist.
Anyway, going home on a smallish road through a heavy traffic area used as a cut-through, houses, industrial estate, and school run, with many roads leading off. An ambulance with the sirens on was coming on the other side, so our car paused to let it through. If we carried on, the ambulance would be blocked. We could see the driver in the white van behind us getting a bit high-rated. Then, after the ambulance had passed, a bus wanted to pull out from a road to the right. Because of the size and layout of the road, if our cars were carried on our side, the bus wouldn't have been able to get out of the junction. So our car paused briefly to let the bus out.
'MOVE' from the guy in the van behind. I could hear the order even with the window shut. He then overtook to the left where there was a road/junction to then come in before us kind of undertaking, but angrily as he drove past his fist up angry as he drove passed. He sped so fast in front of the standing traffic 300 metres ahead. The bus then couldn't get out of the junction causing more of a jam behind. The cars behind the white van man followed HIS (white van driver) actions and mentality, screwing their faces in such anger towards us as they were undertaking.
As our car approached the roundabout later, we passed the same cars.
I thought, 'What a crazy world we are living in that you can't even let an ambulance (with sirens/flashing lights on) and a bus out without being totally shouted at and told you are the crazy one' and attempt to bully you into doing the same actions as them. They were then followed by the drivers behind. I can understand their time is precious, and they are busy people, and so is the case for everyone, especially the poor sod in the ambulance. Are we just all trying to survive and get through the heaving traffic to our own goals? But in doing so makes things worse for themselves and others?
More importantly, I'm left wondering if the bus is still waiting to pull out with its busload of people hungry for their tea.
Photo below: road where the scene happened courtesy of Google Maps
Post 383- So glad it's miserable- 10.6.24
Those who follow know I have the following writing environment:
2) Bed trolly
3) Separate paper, keyboard, mouse, and endless coffee on the trolly
4) TV on mute
5) Curtains Shut
Well, I opened the curtains, especially for the photo - I'm pleased to say it's not good weather. I feel less p*ssed off that I'm in here writing my PhD. For a sun lover, which helps with my health, I never thought I would say this before my PhD.
Photo below: front drive with green trees and dark rainy clouds
Post 384- Glitter Balls- 14.6.24
After a surreal star struck a few days in London due to winning a competitive national writing and journalism competition (long story, and I will be posting about it in an up-and-coming article) …… the input over this surreal experience has helped so much with my PhD which I can't believe my luck. Anyway, today, I'm back to the grind. But still on my glitter ball of hope. I'm editing my PhD for submission, and you guessed it, bananas on hand!
The photo below: chai tea, bananas on bed trolly with laptop and diary
Post 385- Day wouldn't be the same without - 15.6.24
My PhD writing day wouldn't be the same without a bed trolly, laptop, keyboard, mouse, curtains shut, TV on mute, coffee with modulen (liquid feed) and, of course, bananas. Since I won a national writing competition, which I will share here soon, I have had the surreal experience of meeting many published authors, journalists, and TV personalities. It's amazing how down-to-earth and modest they have all been. During our conversations, I have always seemed to have asked the same question: "What is your writing environment?"
#disability #PhD #research #diary #media #tv #Writing #writingcommunity #actors #media #journalism @emmaastranews www.linktr.ee/emmaastra #diaryofadisabledphdstudent #disabledphdstudent www.linktr.ee/disabledphdstudent
The photo below: bed trolly, laptop, mouse, diary, keyboard, on a bed trolly in the bedroom, curtains shut, TV on
Post 386- Realities with IBD- 21.6.24
Some people see my wheelchair as my disability. My wheelchair is my mobility aid. My debilitating disability is ulcerative colitis, which is a digestive disease. Part of a group called inflammatory bowel disease IBD. Please don't confuse IBD with IBD, though. Over 500,000 people in the UK have IBD.So Bad Ass blogs and raises important awareness of how difficult it can be with ulcerative colitis, and she's nearly died from it.
I won't go into the full story again of my ulcerative colitis journey, but I'm praying I can get to creative writing class today. I am 50/50 at the minute as my stomach is unpredictable. #disabilityawareness #chronicillness #ulcerativecolitis Diary of a Disabled PhD Student
Photo below: wheelchair joystick
Post 387- Memories, thanks to Facebook! - 22.6.24
I had deep cravings for chicken whilst on steroids, hence the chicken reference - a memory that came on my newsfeed.
If you are interested in the importance of hospital food - check out Rate My Hospital Plate on Facebook. It's a great group.
The photo below is a post I made on private Facebook with a memory that came up from a hospital stay historically and food given – brown mincemeat, tin new potatoes and orange swede.
Post 388- The Wisdom of Eddie Abbew-22.6.24
As Davina Taylor said in one of her videos- Like him or not, Eddie Abbew has tapped into a demographic that was originally difficult to reach and changed eating habits away from junk food. He has proven success with people of all ages and backgrounds including being a good role model to children despite and probably because of the swearing.
I have been following Eddie for a while now and have seen him rise on social media.
Here, he says the stomach is like a city. Junk food is like the Mattia and drug dealers. If the city gets overrun with them, your body is f**ed. In a previous video, he spoke about how fibre can be lethal for Crohn's and ulcerative colitis, which can be true- indeed, medical professionals at times recommend a low residue, which means a low-fibre diet for IBS patients. People seem to listen more when Eddie says it.
The photo below: a screenshot of Eddie Abbews social media vlog with ‘Your gut is like a city’
Post 389- Single hospital rooms v's bays - 38.6.24
I'm fascinated by the Facebook group Rate My Hospital Plate, where patients share their hospital food. It's surprising how much they vary. My mind wanders back and thinks food is not the only thing that varies- so does single rooms v's bays, which means sharing a larger room with other patients.
This has received little university research. But in my experience, having a single room helps recovery time, so it surely would be cheaper for the NHS- again little research. People who haven't been patient sharing with very diverse people may not understand the full extent of how sharing a bay/ward hinders recovery compared to a single room. This post will explain….
The Gastro ward has a few single rooms, which a couple of times I was lucky to have for only part of my stays—like heaven compared to the bays—made so much difference. I had a TV and was en-suite, which 100% aided my recovery. Sounds weird, right, as it's not medication or medical intervention, right?!
According to reports (linked at the bottom), out of 130,000 hospital beds nationally, around 60,000 beds are single rooms. Although figures slightly differ depending on the report. There has been some scoping by the NHS to make single rooms, and surprisingly, there are only aims to make half of all hospital beds single rooms.
When I went about 100 miles away to Knowsley Hospital Trust (which consists of St Helens and Whiston), where I had a hospital operation, I talked about in other posts- ALL the beds were single en-suite rooms, and this was not only good for me as the patient but helped my recovery. It's like being given steak instead of processed burgers. The food there was great, too.
I have always wondered why there is a stark difference between that hospital trust and the hospital trust where I live, even though a similar demographic in size, city populations, issues, and findings. Even though Knowsley could have taken the easier option of only providing half beds as single, they took the bold and brave statement of having all single rooms which has definitely left a positive mark on me and others I talk to about the experience. @
You might see the rooms and food as being trivial matters. Maybe our stands have increased- for example, it was very normal when going to a B&B on holiday to share a bathroom, but now we demand private en-suites. But is that a bad thing? Also, if you suddenly had strangers come to live in your bedroom and share your facilities whilst being very ill, would it likely make you feel better or worse?(physically through the risk of further infection control and other safety risks but also mentally, which can affect physical health)?
I will continue the campaign for hospital beds single private en-suite as default. Free WiFi, too (charges and access vary dramatically- also, funnily enough, Knowsley was free, too, if I remember right).
https://www.interweavetextiles.com/how-many-hospital.../....
https://www.medscape.co.uk/.../single-rooms-only-new...
https://www.dailymail.co.uk/.../New-NHS-hospitals-built...
https://www.bmj.com/content/375/bmj.n2612
The photo below: a screenshot of one of the above articles of a medic in scrubs and a hospital bed
Hospital Facts | How many hospitals beds UK | Interweave Healthcare
