Chapter 10: Diary of a Disabled PhD Student
Posts 90-99 Exploring the Outsider's Lived Experience
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 10 below contains Posts 90-99 (8.7.23-8.7.23) from my Diary of a Disabled PhD Student.
Chapter 10 Posts 90-99:
Post 90- Peridotite - 8.7.2023
In my last post, the predictive text changed 'years' to 'tears'. I thought this was ironic and kept it in. When I wrote to explain this predictive text, I altered the word 'predictive' to 'Peridotite'! Something made me keep the terms rather than do the obvious thing and delete them.
Sometimes, one thing leads to another if you notice the obvious and have time to investigate further and make links.
Peridotite is a precious gemstone full of valuable minerals. It's like university and education. But it's green. Green symbolises jealousy and bitter behaviour. I'm not saying there is that as such, but many good people are struggling to keep their jobs and have stability, which made me investigate further some time back through what I termed 'Situational Autoethnography' and ever since, I always ask 'whose benefit is this for' with anything in the university setting. An example of this 'Situational Autoethnography' analysis article can be found here:
https://medium.com/@disabledphdstudent/daily-rant-congratulations-to-xxx-who-is-awarded-their-phd-pending-minor-amendments-8aa0304c159e
Andy Stapleton talks about various issues with PhDs and universities. He has a video here, 'Why Academia is Toxic':
With 207k views and another video here, 'PhD Horror Stories: You won't believe what these supervisors did.'
With views, Andy has 178k subscribers, again showing not only the impact of social media butalso raising awareness of a collective of similar stories, which could potentially damage the university's reputation,n especially with the numerous video comments sharing similar stories.
I mentioned Tara Brabazon in the previous post, who is Dean of several Outlander series called 'The Uberfication of The Doctorate'. However, it presents many dilemmas for the growing number of PhD Students. I think this growth is positive as it grows not only diversity but also improves the standard level compared to the fear of depreciating the value. This Outrider 22 - The Uberfication of the Doctorate - YouTube
We are destroying our environment. Many things are discussed in the news about climate change and the problems rubbish is doing. So, peridotites might not exist in the future because of this destruction, which is a shame because it's a valuable mineral in its original form—a bit like education. So, although the word Peridotites initially seemed irrelevant and would be dismissed, it shows the importance of considering various viewpoints to try and improve a situation.
Photo below Peridotite
Post 91- Funny how the memory works- 8.7.23
I was making a coffee and only did Post 90 about ten minutes ago. For some reason, while I was making the coffee, my mind wandered back.
My Social Work Masters lasted two years, 2013-2025. I took unpaid leave from work at specific points, and work wouldn't support me. Some years before, there were more funding opportunities for people working in the field to get a social work qualification. But that dwindled. I have always wanted to do a degree in social work. Still, I worked with what I had- grabbed opportunities presented, a theme for working-class people as reflected in my article Dominican Republic 1996. I write elsewhere about this and the significance of education:
https://medium.com/@disabledphdstudent/why-at-the-age-of-41-i-only-found-out-what-a-proverb-means-fe94c2091e63
I did my earlier BA Degree in the evenings while working full-time. Every weekend and many evenings, I sacrificed doing that Degree in a subject that wasn't my number one choice. At least I had that opportunity back then as the Arts Council gave a massive discount to all students without filling forms in, and the course was in the evenings. That option isn't available in the area where I live now. Ironically, I climbed the career ladder before that and earned much more than an average social worker in social care commissioning, going to private children's homes, and fostering agencies to ensure the council is 'getting value for money'. It was a quality assurance, but I tried to build an evaluation process involving children's voices, writing about positive and negative practices, and helping develop policies.
The team where I worked at above re-structured. A new member *Becky (name changed), started, and within twelve months, she got permission to do her Degree in Social Work. Part of me questioned why they couldn't allow me the time off when I approached them about it instead of doing a degree in the evenings all those years whilst juggling full-time work. But I also looked at it as an opportunity. They allowed her to strengthen my case when re-approaching them about doing a qualification in social work. They agreed to (give me the time off unpaid and not fund any of it but allow me the privilege to take unpaid leave). So, because I had a Degree, I could get a Master's (which I just got there as the university stopped doing the programme after considerable years the following year). Sometime after we started our courses, the stress began for both of us.
"You're so lucky your course is only two years. I have it so much worse three years." Becky said to me.
Becky only started the team much later, so she didn't see the sacrifice I made to do my degree, which was over three years, plus I did a Higher Education Certificate for two years before that. She got accepted for her degree without any previous qualifications. Also, I had to take unpaid leave to do my Masters. My Mortgage payments were better than a few years prior when doing my degree, as I just wouldn't have been able to do it at that point.
So yes, Becky was right. Her degree was three years, whereas my Master's was two, so I had it more accessible in her eyes. But with everything, there's context to the situation. I made sacrifices. So did she for education. We all seem to go through these hardships and sacrifice one way or another. Some people see others well, but you need to spend or know that history about someone to know. That's why the biographies were an important part of my research on the Disabled Peoples Project to re-frame reflection models in academia.
Screenshot: English saying 'Grass is always greener on the other side' when sometimes the land before the grass growth isn't seen.
Photo credit to: Is the grass greener on the other side? (thepracticalpsych.com)
Post 92- Random points can make a point- 8.7.23
I like videos which are about random, unique points. Respected sociologist Keith Kahn-Harris has spent his entire career exploring this phenomenon. With that, he explores something wider. For example, he has written a book and presentations about translating the Kinder Egg into various languages. He explores Subcultures- unique little talked-about issues. He also defies stereotypes with his research into Jewish communities and Fibromyalgia, which he discusses in articles. Keith also has a big impact on Substack, again showing the effect of using such digital media for research/writing rather than traditional forms. Home - Keith Kahn-Harris
I don’t know how that relates to this, but that's how the mind works. My last post talked about my mind wandering back to a random moment. It may have explored something I was previously talking about. This video on my TikTok FYI page says the human brain has, on average, 50,000 thoughts a day, which is 1.7 per second. This video has 2.3 million likes, again showing the power of TikTok. During my research, I explored the Enlightenment philosophers of the 18th century. Erasmus Darwin was considered to have a 'busy enquiring mind'. He made significant developments. He wasn't pigeonholed. He was an inventor, doctor, and writer. He made positive, real, important contributions.
Nowadays, maybe people are branded with ADHD or other neurodiverse disabilities when having a busy, inquiring mind. But it is indeed a normal and productive quality, as these examples highlight. A bit like this Diary in many moments of life pieced together to give more than a story about disability.
Link to above TikTok discussed: https://vm.tiktok.com/ZGJ4NwN2v
The photo below: Screenshot of the above TikTok link scary image of thoughts.
Post 93 - Why are the minority elite winning? - 8.7.23
Over the last few weeks, my research friends have pulled me out of a black hole, mainly through WhatsApp. That is the strongest form of communication for not only me with disabilities but the growing world. How often do some keep up with friends over Facebook and Facebook Messenger? Most of my daily communication, even with my mum, who I live with, is on Facebook Messenger. It's a great storage device, too, i.e. the thought, how do I get photos from phone to computer without a lead, which doesn't work well at the best of times? If sending it on Facebook messenger from a telephone or larger things on WattsApp and logging onto the computer then saving them there. Technology is excellent, but getting something from one place or another is always a drawback. Maybe it's an age thing, but I'm always worried it will not be able to be accessed or get lost. TikTok is also a great video storage centre, like an archive.
But anyway, I digress. A strong theme from the last few weeks is that every PhD researcher I know has a breakdown and struggles.
"I'm struggling writing academically," writes one.
Why are we spending so much blood, sweat and tears writing academically when it's boring to the majority? It will engage a diverse readership. I read a lot of Ph. D.s last year. Fantastic research. But I found myself skim-reading, and the academic language was just so distracting. Academic language distracts from the overall fantastic research. If the majority of us are struggling to write that way and the majority of people are working to read it, why are we writing in an academically detached way in the first place? When we can still be rigorous researchers, being ethical is central to our approach. We can explore a particular issue. We can debate concepts for balance. We can show people's experiences and various data and analyse them.
I formed my contents page yesterday of my 20/30.000 words, which will accompany the 60,000 words of this Diary. I find myself pulled back into 'what's acceptable academically'. With practice-based PhDs, there is too much emphasis on making the 30,000 words written academically, which distracts. Some people still need to publish their 30,000-word reflection with the practice piece. But I've always said I want the whole thing accessible to all. The 30,000 words can still be a rigorous contribution to research, but I've just got to remember it can be presented differently in terms of language, which has got to be what the majority understand, not what the minority' feels' right, which isn't stipulated in any regulations anyway.
https://www.qaa.ac.uk/docs/qaa/quality-code/doctoral-degree-characteristics-statement-2020.pdf
Characteristics Statement: Doctoral Degree (qaa.ac.UK)
The photo below is a screenshot of the above link
Post 94- Being able to focus on what you're doing- 8.7.23
I was watching a TikTok video the other day by a choir singer in a church. It's one of those churches where the music is good, and positivity runs through it. Where everyone can't help but stand up and raise their hands and join in with the emotion. I must visit there sometime. But this guy is American, so enjoying it through the power of TikTok.
He said many choir singers have jobs elsewhere, for example, at Walmart, an American supermarket. It has nothing to do with music, which is their specialism, and he's such a great singer. He asks how a person can perfect what they are doing if they are distracted elsewhere. Choir singing should be treated professionally; if the choir singers are paid, they can perfect their work and devote themselves to singing 100%. He does have a point.
I'm very privileged that I have been able to devote myself to my research. It is my life. I live and breathe it. There has been a power to that. I don't just switch on the computer at set times. I also don't have the pressure to conform to a cultural narrative. My research is self-funded, and I've tried to find ways around limited resources. I do the Disabled People's Project and Actors Project, for example, with no money, which was a big learning curve for me; setting up the projects on my laptop and recently upgraded phone with 1tbz—memory, which drastically helped.
I do everything to benefit people with disabilities, chronic health, or any form of disadvantage/struggle. Not everyone is in this privileged position. For example, international students face a huge disadvantage that needs to be discussed. Universities encourage international students to study with them. They pay 3x the rate of students from the UK. For example, at my university, I pay £3,700 per year (with a 10% discount because I've studied there before, which normally would be a grand more). A student coming from another country and living here would pay £15,000 per year for the same course. They might have taken a loan, or their parents made other sacrifices. Then they pay for accommodation on top.
On top of that, they are away from family and support systems. I am often learning another language and culture. The pressure is on for them to complete their PhD. If I were in that situation, I would do what was told to complement and not raise any concerns in the worry that might go against me and not pass. We talk about the decolonisation of the curriculum. But in a way, the system is doing the opposite and colonising it by forcing international students to face huge disadvantages and discrimination. However, many international students have talked about the positives of being able to do a PhD with UK Universities. And this concept of 'getting on and doing what we are told even though it makes no sense' isn't just a consequence for international students. With course fees rising across the board, there's a lot at stake for students if they raise issues. I'm so lucky that I am privileged in a lot of ways. In my previous Master's, I did what was needed to get the certificate even though it went against many of my principles. Because the pressure was on me to get that certificate, now I can question things.
News articles about this: Universities reliant on overseas students - report - BBC News
The photo below is a screenshot of the above article.
Post 95- P**sing it down yet sunny - 8.7.23
Okay, so yesterday I was peed off because it was sunny, and I was by the computer doing PhD admin. Looks a bit miserable outside today. For some reason, my mind wanders back to March 2020—the start of lockdown. Our creative writing class moved to online. The teacher lets us know about this book by Mahsuda Snaith. I buy it. For some reason, I sat outside despite being cold and wore a coat all day reading it. I completed reading it by the end of the day and brought her next one, a place to call home. Even though it is fiction, it's semi-autobiographical because a lot of her situation came out in the book. British Asian grew up on a council estate in Leicester and had significant mental health issues (protected under disability legislation). She also writes about her characters' experiences with Chronic Fatigue Syndrome and being bedridden, another disability, which is reflected in her real-life biography. A bit like how Sue Townsend reflected in my thesis reflects her disabilities within her fiction.
The photo below: Mahsuda Snaith's books and links
How To Find Home: Amazon.co.uk: Snaith, Mahsuda: 9780857524690: Books
The Things We Thought We Knew: Snaith Mahsuda: Amazon.co.uk: Snaith, Mahsuda: 9780857524683: Books
Post 96- A moment can't be re-created- 8.7.23
So, on that note from the previous post, I went into the garden in March 2020 with Mahsuda's book and a coat and braved the English weather. So I did that today. But it has a different feel. I'm trying to understand why. I hear the birds sing. I remember I needed to feed them. I want to provide them. So I make the difficult journey over the grass to the bird trays. I'm glad I did it. Knowing they will be well-fed and be able to provide sweet music.
It starts to get sunny, and then it starts. Well, it's not. I can go inside and enjoy the warmth.
That's English weather got you. One minute bad, then good, then bad. The mind and body are a bit like the weather. It’s a bit like education. Some people would find the journey to the bird tables easy. But it takes work. Wheelchairs don't go over grass east, so I always walk there. It's hard work but very rewarding. It's a bit like with everything.
The photo below: garden dark clouds storm brewing
Post 97- Sometimes the struggles can bring good- 8.7.23
So, as I finally got to the bird trays to put the bird food and bread, it was p**sing it down.
When I got back in, I appreciated the inside more. If I hadn't been through that struggle of feeding the birds, I wouldn't have enjoyed the good stuff I take for granted. If someone were always inside, they wouldn't see what's outside.
When I got inside first, Mum said, 'The squirrel was wondering where its food was this morning, so it came into the garden and kept looking around.'
Within two minutes of getting back inside, various creatures appeared and started eating. When the heavy rain started again, the squirrel kept walking sideways up the fence, stopping eating. Then, I kept returning to get more bread (I wonder why I went for that rather than the bird seed. Maybe because I've been neglecting them. They went for the most Starchy thing first and neglected the nourishment). It was a bit like when soldiers got trench foot in WW2 when they were on the soggy ground for too long. The squirrels are intelligent and know instinctively that they must change position and return to the ground; otherwise, they end up with trench foot.
I thought this whole thing with the bird table represented research, disability, and going through struggles of any kind. There is a power of personal work that, when conquering, not only brings personal satisfaction but also genuinely helps diverse backgrounds. But we have much to learn from the grey squirrel to prevent injury and long-term negative consequences. Change position for a short while. The squirrel went upwards, then back down on the ground. If the squirrel stayed on the floor, it would have ended up with the equivalent of Trench Foot. The fence allowed it to have the opportunity to get away from the ground, and its body allowed it to walk sideways. Not all squirrels have that fence handy at the crucial time when it starts raining.
The photo below is of all creatures coming for food.
Post 98- I'm just so contradictory- 8.7.23
When channel 5 used to have 'Can't pay to take it away', I watched episodes once and several times. 'Poor House, Rich House' I avidly watch on a Sunday night (some are better than others) or the rich holiday holiday version. 'Bargain-loving Brits abroad' is another one. Everything which I stand against, yet I secretly love the shows.
I’m afraid I have to disagree with the Bailiffs. Disadvantaged groups, especially those with disabilities and chronic illness, are seriously at risk by such people. But the programme was good in giving another perspective- that of the lives and difficulties the Bailiffs have. A friend from my creative writing class specialising in fantasy and sci-fi lent me a fantasy book called Grunts by Mary Gentle. It took me all year to keep picking up and reading, as Fantasy or Science Fiction aren't my strongest points. I almost grunted every time I looked at it. But my friend showed me something new and important. Grunts show the 'Orcs' through the eyes of the 'evil' person on the front line fighting against good. I thought similarly to earlier Philosopher Hannah Arendt, the Holocaust survivor. Hannah says she doesn't hate the people who killed innocent people- the ones who killed innocent victims were either brainwashed or fearful of the consequences if they didn't. They were doing it on behalf of 'those upstairs'. Who are 'those upstairs'?
But we see a theme here: to break down barriers, we must see things from other people's perspectives and put ourselves in their shoes.
I even loved Delroy in Can't Pay to Take it Away so much that we connected on Facebook. He's just recovered from Leukaemia (public information). He's such a lovely, genuine guy. Even though on paper and my principles, Bailiffs are everything I stand against. But it is not them. I hate it's the system, and I feel sorry for them in many ways.
Some people criticise Channel 5 for showing hate towards 'poor' people. I wonder if they do. They highlight the problems poor people face. They seem more sympathetic towards disabled people lately; going away from all disabled people is a scrounger's rhetoric. I remember when Channel Five first started in the 90s. Only a little was on the channel back then. At least it's progressed in that respect. It's one of those situations where I should be against such programmes but somehow watch a lot of these shows.
The photo below: Watching Channel 5 Brits on Sun
Post 99- Lived (or living) experience - 8.7.23
As I was re-looking at different definitions of lived experience. I came across this interesting article by the Spectator, ' The Brief History of Lived Experience'. Ironically, it was talked about elsewhere in my research. James Innes-Smith talks about the drawbacks of Lived experience. At times, it can take their word as 'gospel' in that fact and dismiss everyone or everything else—e.g. Sidiq Khan (politician) dismissing significant evidence presented to him about racism. James, the article author, has a point about this. A quick search online of James discovers that he has ADHD, a disability.
In the article about the history of Lived experience, James states, when quoting a book about feminism, 'Objectivity is often a sign of privilege and distance, not expertise.' But then later in the article, criticising that notion as a 'mode of putting it on a CV and quashing alternative viewpoints'.
This article is at risk of quashing the value of Lived experience. However, James Innes-Smith does have a point, and the article is written well. My mind wanders back to a talk Esua Jane Goldsmith did in October 2021 at the University of Leicester to mark Women's Day about her excellent memoir 'Space between black and white'. She said that sometimes women are put at the front of the positions on the ground but say what the male boss wants. She added that she thinks philosophy is the way to make real positive change rather than formal policies; otherwise, such equality issues become a smokescreen. I can't help but agree with her.
Part of James- -Innes Smith's article below "Everyday Feminism website entitled 4 Reasons Demanding 'Objectivity' in Social Justice Debates Can Be Oppressive, even goes so far as to assert that Objectivity is often a sign of privilege and distance, not expertise.'" (below article)
The above is kind of an ironic section in this article, as he's white middle-aged critiquing feminism. Indeed, I believe more men should do feminist research. Outsiders and insiders are important to come together to share ideas, and neither party is afraid to speak their viewpoint or, even if opposite ends of the spectrum, are equally valued. Having different views is okay; I'm even friends with many other people. Each lived experience will be different. But it is important to get real people's voices out there and not re-invent this rhetoric that is too personal, which means it is subjective and must be an objective kind of old debate. This can create this judgement that lived experience research is less rigorous and thorough than detached. Both can be balanced, which is the key for research, but both can equally be one-sided. Coming together creates balance and important contributions.
It is also quite ironic that the article needs to include a lot of history of the lived experience. A similar paradox to what academia does is build up its argument in an essay and omit certain things to build its opinion, using academic language to confuse everyone. It's so subjective.
I started following James on Twitter. Overall, this is a great article and thought-provoking. He also critically examines his own experiences in other articles.
Let's get Esua Jane Goldsmith's approach to the forefront.
The photo below is a screenshot of a link to the spectator article discussed above.
A brief history of 'lived experience' | The Spectator
