Chapter 37: Diary of a Disabled PhD Student
Posts 360-369 – Expect the Unexpected with Disability (7.5.24-19.5.24)
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 37 below contains Posts 360-369 (7.5.24-19.5.24) from my Diary of a Disabled PhD Student.
Chapter 37 Posts 360-369:
Post 360- Porridge- 7.5.24
There’s a long-standing joke in England—porridge is served to prisoners. There was even a 1970s T.V. sitcom called Porridge set in a prison. But you know what—porridge is now expensive!
Eddie Abbew, TikTok digital creator who has gone viral over his ‘eat no S*it’ campaign for non-processed food- highlights if having porridge has organic jumbo/steel type of oats. Costs more! ITV Good Morning Britain recently did a section about ‘pay more get less,’ which seems to have been my mantra for some time. And that seems to be the case for even porridge. Get less in a pack and pay more during the cost of living. But also, the availability of items costs more. As we are enlightened about reducing non-processed food, so is our food bill. All the good stuff is disappearing or costing more than the rise of other items. Cost of Living Crisis tips on TikTok and Facebook give prices for items what they were a year ago compared to now—a staggering increase.
Porridge is now £2.90 for this type. It was a £1 chapter just a year ago.
I’m eating beige food due to re-inducing solids after a liquid-only feed for my digestive disease. I’m allowed certain food groups. I’ve started a new Instagram page documenting it following putting vlogs on my TikTok diary about it called Modulen_and_me. I did it in a slow cooker for 7 hours yesterday with water (I can’t have dairy yet). I had the leftovers today, and there’s even a joke in history about prisoners having yesterday's porridge. But I have to say it tastes better today than yesterday.
Porridge T.V. show: https://www.comedy.co.uk/tv/porridge/
Eddie Abbew: https://www.tiktok.com/@eddieabbew?_t=8m9inEIefjt&_r=1
Cost of living crisis tips: https://www.tiktok.com/@costoflivingcrisistips...
Modulen_and_me : https://www.instagram.com/modulen_and_me...
Dominic Watters talks about cost of living was always an issue for people experiencing poverty and the ‘food is care’ campaign https://vm.tiktok.com/ZGeQfLcBh/
Post 361- Good things going- 7.5.24
This is another example of what I’m finding—all decent stuff is disappearing from our shelves. The stuff that works is going. The stuff available is not as effective and has gone way up, costing more than the original good item! This is another way of looking at the ‘pay more, get less’ concept in the previous post.
This mouth ulcer treatment is really good. A side effect of one of my digestive diseases is painful mouth ulcers, and this treatment worked well. It's not available now. The only stuff that is less powerful yet more expensive! This is a theme I’m finding, especially in healthcare products, but also in other items.
Post 362- #whatispendmypipon - 7.5.24
Last week, newspapers and T.V. were inundated with the headlines that the current U.K. government is considering reforming Personal Independence Payments (PIP), a disability non-meaning-tested benefit for those with disabilities with costs that they wouldn’t have experienced without disability. Shani Dhanda was on Jeremy Vine on T.V. this week, shown on TikTok (link below), explaining research has shown disabled people are £980 a month worse off but often much more. Yet the government are thinking about replacing PIP with vouchers. This would likely cause more strain on carers, health services and other services and ultimately to the worsening health and wellbeing of people with disabilities.
It’s been great to see several people with disabilities hit social media over the last week with the #what I spend my pip on vlogs, especially TikTok. Jemma Brown, who is blind, has PTSD and EDS and is an accessibility advocate, made this video (link at bottom) showing the extra costs of being disabled with examples.
The government is conducting a consultation called ‘Green Paper,’ which took me time to realise this is due to the language. So here it is if you want to complete:
PIP consultation questionnaire:
https://forms.office.com/Pages/ResponsePage.aspx...
PIP Government consultation email: consultation.modernisingsupport@DWP.GOV.UK
Jemma Brown video: https://vm.tiktok.com/ZGeQfyprF/
Sensory Unicorn viral through photo vlog showing examples of what spends PIP on disability needs: https://vm.tiktok.com/ZGeQP8U9P/
Kate Garraway previously raised awareness.
Of the cost of care which I have to fund: https://vm.tiktok.com/ZGeQfk2dA/
Shani Dhanda on Jeremy Vine's show on TikTok about costs for disabled people research: https://vm.tiktok.com/ZGeQf8FDj/
Disability News Service, which reports on Government consultation to reform PIP which hit mainstream news last week: https://www.disabilitynewsservice.com/dwps-brutal-green.../
Post 363- Tales from The Hospital Ward- 8.5.24
I’m working on the next episode of the Tales from The Hospital Ward series, a fictional series based on real-life events from being a patient on a gasterentology ward. I’ll be releasing it in a substack and share it here when published-
Here are episodes 1-3 as a re-cap:
Episode 1:
https://open.substack.com/.../tales-from-the-hospital...
Episode 2:
https://open.substack.com/.../tales-from-the-hospital...
Episode 3:
https://open.substack.com/.../tales-from-the-hospital...
Post 364- Am I posh now? - 8.5.24
I used to think only posh people had avocado and egg on toast and joked that seeing it on TV was ‘more money than sense.’ But here I am doing it.
*Disclaimer: I’m on a special diet for my ulcerative colitis. It is called Modulife re-introducing solid food after being on a liquid-only drink called Modulen to rest the intestines. I’m in phase 2, which includes homemade bread, avocado and egg. So, seeing as it’s been pretty beige thought this would bring excitement. Black pepper and sea salt make it taste better- does that make me more posh?
P.S. Avocado now £1.45 each!!!!!!!
Eggs are expensive (been watching too much Eddie Abbew and got organic)
Bread- somehow, this homemade bread malarkey is lots cheaper than shop
I remember the great smell from bread factories in Leicester years ago (near now B&Q.
Abbey Park) and the Rushy Mead area near Thorn Lighting (now Sainsbury’s). Both are not there anymore. This bread reminded me a bit of that smell when making it. Am I even more posh when making homemade bread?
Post 365- Benefits of second opinion- 10.5.24
Post 244, I reported on Jet from Facebook and TikTok, who is an adult with cystic fibrosis and hit a national news story talking about her hospital experiences.
She does her first YouTube tube video in 2 years here, showing the benefits of getting a specialist 2nd opinion. This is more than ever relevant with the recent Martha’s Rule being publicised - Martha was a child who died of sepsis, and her mum has campaigned for getting a 2nd opinion whilst in hospital. 2nd opinion has always been there, but it needs more awareness.
I could relate to Jet even though our disabilities are quite different - in 2020, I developed a fistula, which was a complication of my ulcerative colitis, a digestive disease. A fistula is a hole that appears that leaks s*it from another part of your body. It was the most debilitating part of the ulcerative colitis disease to date, yet it gets little publicity. My Local hospital would keep the hole open by a seton line, like an elastic band in your bum. It was so problematic and caused loads of infections. I then found a specialist (by internet research) in fistulas, Raj Rajaganeshan, commonly called Mr Raj, at St Helens and Knowsley Hospital near Liverpool, about 120 miles from where I was in Leicester. I initially saw Mr Raj as a private consultation for around £150 at another hospital. I was lucky he also worked as a consultant at an NHS hospital. So, my G.P. did a referral to have the operation under the NHS—a complete lifesaver for my quality of life. Mr Raj did the surgery and completely got rid of my fistula—no Seton line, which caused them nasty complications such as infections. I can sit down; without Mr Raj’s surgery, I wouldn’t have been able to do my PhD. If I had stayed local, I would still have seton line and probably problems and more pressure on the NHS. I reflected on the importance of specialism, not just second opinions. I will always be in debt to Mr Raj's great work. I was also lucky to have my dad help take me, which some people don’t have.
Jet highlights the importance of second opinions who are specialists in her condition:
Mr Raj:
https://www.linkedin.com/in/raj-rajaganeshan-4aa63195...
Martha’s Rule
https://www.england.nhs.uk/patient-safety/marthas-rule/
LINKEDIN.COM
www.linkedin.com
Post 366- Thank God it’s miserable weather- 13.5.24
I never thought I would say this, being a sun worshipper, but thank God it’s raining. I don’t feel so much resentment stuck inside writing my PhD when it’s not sunny.
Post 367- Most unexpected place having a great accessible toilet - 14.5.24
So, we went to Bradgate Park on the annual pilgrimage to celebrate Dad’s birthday. One hundred acres of rural countryside where Lady Jane Grey, who was Queen for six days in history, and loads of deer live.
It's the best accessible toilet I’ve seen in ages—well done, Bradgate Park. I was left wondering, why can’t I find a decent disabled toilet in the hospital where loads of people with disabilities and chronic health conditions are? Yet I find a brilliant toilet in the most rural unlikely of places!
This is also a changing places toilet, which is even more difficult to find (and non-existent in any hospitals I’ve been to). So, if you need a hoist and want to enjoy the British countryside, this is the place to be!
https://www.bradgatepark.org/
Post 368- Garden BBQ envy- 18.5.24
I’m sitting inside writing my bloomin PhD, wishing I was outside, then this comes on to make me feel worse. I wish I had one of these, especially one with low counters and a wheelchair-accessible one. One day, when I win the lottery.
James Martin on Saturday morning T.V.
Post 369- World IBD Day- 19.5.24
https://crohnsandcolitis.org.uk/get-involved/world-ibd-day
From my private Facebook page:
