Chapter 33: Diary of a Disabled PhD Student

Posts 320-329 Instead of Adapting, Improvising and Overcoming, having the people who will help climb the Mountain of life (19.3.24-26.3.24)

May 17, 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. 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 33 below contains Posts 320-329 (19.3.24-26.3.24) from my Diary of a Disabled PhD Student.

Chapter 33 Posts 320-329:

Post 320- Art important mechanism for showing important issues - 19.3.24

This piece was inspired because, at museums, paintings are placed at an ‘average’ height up walls, which can be more difficult to see if you are at a different height. Hence, the title ‘Art is for everybody but not you.’ It also metaphorically represents wider issues for disabled people. A great artist named Sam Cleasby has one of the same conditions as me, ulcerative colitis, and she shows many of her lived experiences through her art.

https://m.facebook.com/samcleasbyart1/posts/122098096952250627?wtsid=rdr_0Bx1IjMwHBaPkjoe

Post 321: If the mountain doesn’t come to Muhammad, Muhammad must go to the hill—21.3.24

So those of you who have followed me for some time will know that I have three wheelchairs and have even held university research conferences on ‘why I have three wheelchairs!’ For those new—well, now you know!

Anyway, I wrote about, ironically, on Independence Day (July 4th), my small electric wheelchair that fits in the car broke. It’s been broken since and it’s March 2024. Well dedicated time and energy numerous times to sort the issue out. Local Mobility, place number 1 at Fosse Park Leicester, said they only fix wheelchairs and source the parts. Parts are only available from the wheelchair place I bought them from. The second mobility place in Wigston, Leicester, said they would fit. So, the wheel can air place I got it from advised me new control panel and joystick were needed, which I purchased and was sent to me. I went to Mobility Place and was told the control panel hadn’t been programmed correctly. So, the wheelchair place sent another one. Went again. The same thing happened. The wheelchair spun around and wouldn’t stop—something like out of a comedy show. So, the wheelchair place suggested that I send it in the post to them to fix (they are in Essex, and I am in Leicester, about 130 miles away). I didn’t want to rely on the post and another problem potentially happening. So, I did something crazy ‘’Can I come to you physically to fix it?’’ I wrote.

‘’How will you do that if it’s broke?’’ the email replies.

‘’ No, I mean, put it in Dad's car and come to your place. Do not use the wheelchair all that way,’’ I reply.

‘’ yes, of course.’’

Nothing was too much trouble. They even rearranged the day when I was too ill to travel. I was determined to sort this problem out. Dad and I made the journey. We got there. They fixed it within half an hour. It was programmed in the right. It shows that you must get the right person for the job and who makes it all effortless.

‘’Try it out before you go to make sure you’re happy with it,’’ Rocky, the engineer, said.

There I was, zooming up and down on my fixed wheelchair, in a car park in an Essex business park like a mixture of the cat that got the cream and an elated toddler being given their favourite food. ‘’Just like the old days,’’ I shouted back to Rocky and my dad—the wings beneath my feet or the joystick by the wheels.

The salt of the earth people were with me that day.

Now, this will offer so much flexibility. I don’t have to take my manual wheelchair when driving and being pushed like a 2-year-old. I am grateful for the other NHS electric wheelchair, but I won’t go in the car without a hoist. But it is great for independence. But being immune suppressed need to avoid crowds as much as possible. So even though cars are not very environmentally sustainable are an aid for disabled people in many ways. This chair doesn’t cover rough surfaces but is great for hospital appointments, shopping malls, and anything with smooth surfaces.

Thank you, Mobility Plus wheelchairs. You have restored my independence and flexibility and provided outstanding service when the chair goes wrong. Thank you so much.

Although the saying If the mountain doesn’t come, Muhammad must go to the mountain means the person should adapt to the new situation. However, I couldn’t reflect on this experience of going to Essex, even though not a hill, as such, did solve the problem with perseverance and the right people. Maybe adapting is overrated. If the wheelchair won’t get fixed in Leicester, off to Essex, I went. Despite difficulties making the journey I learned so much that day.

Thank you, Mobility Wheelchairs.

Update May 17th, 2024: Fixing this wheelchair has made a HUGE difference. Unfortunately, my dad has been ill lately but still managed to put the chair in the car. This has meant I can go to hospital appointments in the car and not need someone to push me in the manual chair when getting there, so I don’t feel like a toddler being pushed in a pushchair.

I really recommend this company—brilliant service if you have any problems. Disclaimer: I am not endorsed, paid, or sponsored by this company to say this! This is my honest opinion based on my personal experience.

https://mobilitypluswheelchairs.co.uk/collections/mobility-scooters?gad_source=1&gclid=Cj0KCQjwgJyyBhCGARIsAK8LVLOzh3tuApvdeJE-u_fv93aSeEqZYGEHklRvOqfrbT7UHiqXUCx5ApEaAjiBEALw_wcB

Post 322- The most obvious is now obvious- 22.3.24

They are going to a creative writing class. Adjacent to the bus stop is a front garden. Most houses around here have turned them into drives for their cars. Car parking spaces are now premium. But this house hasn’t. Over the months looks like weeds. Today, spring can see them for what they are—a stunning garden with flowers, herbs, and bird tables to attract wildlife. Here in the suburbs, anything is possible, just like disability research. But I can feel the spring heat now, just like my PhD! The heat is on!

Post 323- women’s football on TV- 23.3.24

So, whilst editing or writing PhD, I always have the TV on mute (strange, I know). Anyway, women’s football is on. I don’t normally follow football. An autobiography I read last year by accident called ‘My Fight for Life’ by Leon McKenzie, an ex-football player, taught me more about football and the culture of football and its players than any other book.

But anyway, it’s great, isn’t it, that there’s more women’s football on TV now? However, I couldn’t help reflecting on one thing when seeing this…… all players are women, but the big chiefs at the side, like the managers and referees, are all men. I suddenly had flashbacks of Esua Jane Goldsmith's (a writer) talk I went to mark Women’s Day 2021, where she talked about her memoir ‘The space between black and white’, which again taught me more about women and race than any book I’ve read. She said during the talk that often, women are put at the front for marketing, but it’s men with the power telling the women what to say at the back of them. For example, she said, like Priti Patel politician who spoke against immigration, her parents were immigrants but controlled by her boss's rhetoric. In female football, we see it a step further- women’s male bosses control physical movements—a similar parallel in life.

I’m trying to imagine a male football team with a woman manager and referee- does that exist?

There’s only one female manager in male football. Yet only 1/3 women’s football have women coaches, and homing on the word coach instead of manager used in the article:

https://www.lboro.ac.uk/.../historic-appointment-for.../

https://www.skysports.com/.../why-there-is-a-lack-of...

Post 324- Tales From the Hospital Ward- Episode 3 - 23.3.2024

Substack is the home of my creative side of autoethnography. Autoethnography is a research method that explores the lived experience of the researcher. Although I specialise in non-fiction, I also delve into the benefits of other forms, such as fiction and art forms. The stuff on Substack is this creative stuff, which doesn't fit into my medium articles. While attending an advanced creative writing course at an adult education college during my PhD, I completed things. This has also enabled me to explore part of my research questions. Here is my recent publication on Substack called Tales from the Hospital Ward- Episode 3. Episodes 1 and 2 are also on there. It is fiction but based on real-life experiences:

https://disabledphdstudent.substack.com/p/tales-from-the-hospital-

ward?r=2ctifv&utm_campaign=post&utm_medium=web&fbclid=IwAR0vIl7LYrx_G71UODCXLxvUTxfSrBtywkhUgI08qLmR9Huj9pZ_IwKmqes_aem_ATUSzmTSkp46zvexSKH6uKuNzyN4HToumT0PvxkwG3bOh9-877vva20W3p6LNaJHyEgCsYg9LSuflQfJ_fu6t6z8&triedRedirect=true

Post 325- The bread viral craze - 25.3.24

So, I haven’t been eating any food at all due to being on a liquid-only drink called Modulen feed for my ulcerative colitis. The aim is to give the intestines as much rest as possible. I’ve spent over seven weeks on it until Friday, marking eight weeks. I’ll post about that soon, as I've been keeping a Modulen Diary on TikTok.

Some may know the social media craze for single-ingredient, non-processed, preferably organic food, which Eddie Abbew made viral and influenced other digital creators to follow suit. Everyone has also gone mad about breaking their bread, especially sourdough.

I made this to get some bread-making practice in for when I’m ready to eat, as I will be eating a non-processed diet as much as possible. So, accidentally and co-incidentally, I am following the Eddie Ebew viral craze. This bread didn’t exactly go to plan; it must work on the rise! But Mum said it tasted good. Hopefully, practice will make perfect by the time I’m eating it! I will build up to sourdough, as that’s a bit more complicated. It took the ‘Spoons’ away from me. In other posts, I talk about spoon theory- a person with chronic illness has 12 spoons daily for daily activities like brushing teeth, cooking, and getting dressed. You can soon be spoon-deprived! I seriously have bread envy seeing TikTok bread!

Post 326- This is an example of the importance of local newspapers showing the reality of people’s experiences - 26.3.24

Many others have commented under the story on Facebook newsfeed of similar experiences at this hospital. Despite I talk about being grateful to the NHS despite some previous bad experiences myself, such examples show how the NHS can develop to improve for people- which doesn’t take money or resources - it takes listening to patients and humanity. The NHS is important to stay the world class example.

https://m.facebook.com/story.php?story_fbid=804946055003706&id=100064649563400

Post 327- The real reason why I am doing a PhD- 26.3.24 The Frustrated Researchers

This photo was posted on The Frustrated Researcher's Facebook page. This is the real reason why I am doing my PhD. So, no one will know if I am a man or a woman. I am from a long line of women who have faced immense struggles yet contributed so much despite all of their struggles and little financial resources. My mum's mum was a single parent in the 1960s when divorce was a taboo, especially amongst the working class. My dad’s mum initiated many community developments to improve the area, and the headline from a local newspaper in 1977 about her was a husband's rival’! I didn’t want gender to be an issue in improving the lives of people with disabilities and chronic illness and, along with having a Dr title, bringing more clout into improving the lives of others. Also, it won’t jeopardise the chances of that as I won’t be called a Miss. I will have a Rd as my title. It is the only title which gives gender anonymity.

Below photo: a woman holding up a plaque is asked by an ex if she’s a Mrs or a Miss, and she says Dr. Photo credit to @the frustrated researcher.

Post 328- Procrastinating- 26.3.24

So, I’m doing re-edits on my methodology chapter. But instead of typing on my laptop, I’m typing on my Diary of a Disabled PhD student Facebook page on my phone! I will add a story I wrote in creative writing class last week about procrastination in due course once I type it up and share the link here! I will add to this procrastination story again, as I must get on and do it! Article here: