Chapter 1: The Diary of a Disabled PhD Student
Posts 1-9 Insight into the author's world with outside references-connecting with the viewer.
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 1 below contains Posts 1-9 (20.4.23-24.4.23) from my Diary of a Disabled PhD Student.
Chapter 1 Posts 1-9:
Post 1- Spring Sun - 20.4.2023
I've debated how to start this page with several dilemmas for some time. I have to get on and do it now.
Through a set of weird and wonderful situations, I started doing PhD research in September 2021. I was actually due to start a year earlier, but health complications meant beginning in September 2021. Sometimes, things are meant to happen at a particular time for a reason, which I will go on to talk about.
If I complete my research on time in the summer of 2024 will mark my 20th anniversary as a mature student at the same university. I've experienced change within the university landscape equally as I've experienced changes within my own body across those (almost) 20 years.
I ended up being 40 years old and starting my PhD in 2021. Co-incidentally, last year marked the 40th year of Leicester author Sue Townsend's 'Diary of Adrian Mole', which showed several important real social and political issues in a funny, engaging fiction format. Although my format is non-fiction, there is no way I am in the league of such great writers. There is, however, another story for another time of the relevance of such people as Sue Townsend being an inspiration for my research.
My original research thesis title was ''What is the significance of autoethnography when considering the difference between disability inclusion and representation in the media?''. Then, through another strange set of weird and wonderful experiences, I realised we all know about representation and inclusion (or the difference and lack of it, etc.). What's new? What is more engaging and accessible for diverse audiences? However, the original idea of producing a website to celebrate disabled people with biographies has remained and expanded upon, as discussed below. I am using Social Media as a tool to explore the impact.
The short story, amongst another strange set of experiences, is my PhD title changed to ''The Diary of a Disabled PhD Student: Sharing the lived experience of chronic health conditions and Dis.'' Taking inspiration from creative writing practice-based PhDs with a difference. Part of the thesis includes a substantive 'practice part' called 'The Diary of a Disabled PhD Student'. The Diary is a collation of these Facebook posts which share daily life from a disabled lens and other aspects of the research website www.linktr.ee/disabledphdstudent, which forms this research project. A comprehensive critical reflection write up accompanies the Diary within the PhD thesis.
The Diary of a Disabled PhD Student forms part of my overall research project. My live 'work-in-progress' links can be found here: https://linktr.ee/disabledphdstudent or https://direct.me/disabledphdstudent.
For example, I have the Disabled Peoples Project and Disabled Actors Project, where I showcase and explore biographies of people with disabilities (www.linktr.ee/disabledpeople and www.linktr.ee/disabledactorsproject). I have already found a wealth of people with disabilities from past and present. You don't always hear about their disability, if not a prominent feature of their work or, indeed, as many disabilities and chronic health conditions are hidden.
I also signpost to relevant articles I have written and produced since starting my PhD in relation to my topic. As part of my project, I've also interviewed people with disabilities working in the media.
The Diary will reflect these above aspects from my projects. But also everyday encounters or other situations. Although this is a very 'reflexive' exploration, the mind goes backwards and forth with memoir writing. Various aspects of my life and consumption are examined.
The main questions I am exploring are
What is the impact of sharing lived experiences of disability and chronic health conditions as research?
1. What is the impact of showing research differently on the audience?
2. Is it several structural inequalities, intersectionality, or other aspects that affect people with disabilities and chronic illness to succeed in the media or academic ventures?
3. What do we mean by publication in PhD Research, especially in contemporary society and for people with disabilities?
You will also see snippets of my diary data collection. I also have a link to some of my different diary data, including TikTok Daily Diary VLogs, on my links above. These may be different from the perceived 'norm' diaries.
Going back to my first paragraph in this post, you might be wondering what were these 'dilemmas' that took me ages to start entering data on this page....... firstly, would my interactions have changed if people knew I was going to be writing about such occurrences? Also, this research has received approval from the thorough and rigorous university ethical process. But I'm always conscious that ethical harm isn't JUST to 'others' as per current university protocol. There the three harms in research: harm to self, others and the organisation to consider.
You might also be wondering why on earth is the book ‘War and Peace’ in the photo below, along with some diary formats (including the TV and phone!). I got War and Peace when I first moved to Canterbury at the age of 18. It stayed on my shelf. I was moved to where I moved to throughout my life. I’ve read extensively. For example, yesterday, I read a whole autobiography book in one day, and I enjoy very diverse book disciplines. But to be honest, I prefer TV and social media, and sometimes there can be resistance in universities to encouraging alternative forms other than books as educational. However, I have never read ‘War and Peace’ in all the years I’ve owned it. Even though I have re-read my other home and online/Phone Kindle library collection numerous times over the years, every time I pick up this book and attempt it, I can’t get into it. War and Peace are included in this photo because my history and life with the book symbolise what I was beginning to find during my research - I could not relate to the language and layout, so I stayed on my bookshelf without interacting with it.
(Update: April 2024 I binge-watched the BBC 2016 series on U.K. Play TV at Xmas 2023 - War and Peace is one of my favourite storylines, and redemption of previous thoughts is also a theme of this project! But it goes to show education isn’t just in the book format. It can be TV and depends on how you connect/relate with the writing)
All opinions are my own and do not necessarily represent the views of my university or other people.
Photo below diaries
Post 2- Two Sides of the Courtroom- 21.4.2023
When we were trying to find disabled parking in town and finally got one….my mind wandered back for some reason and reminded me of Beth….
Post 2 Link to Article Beth (to put here)
Photo below: Time limit on accessible parking space
Post 3 - Friday's Creative Writing Class - 21.4.2023
I go to a creative writing class at an Adult Education College. We broke off for Easter on 31st March, and class resumed today, Friday, 21st April. My dad helps take me, and he puts one of my wheelchairs in the car. If you're interested, here's a link to an article and video I did about why I have three wheelchairs:
Article: https://medium.com/@disabledphdstudent/draftdoing-conference-delivery-differently-3aaf0d68dca3
YouTube:
On the way to class, conversing with my dad, I realised I had only been out of the house twice in the last three weeks. After looking in my Diary, I saw one of those times my dad took me on Saturday, 8th April, to see my good friends in their 80s for a couple of hours. The other time was to go to the dentist on the 13th. I wouldn't have been going out today if it wasn't for the writing class. That is Life with Chronic Illness. I don't need to get out more - staying in helps me manage my health. But making the effort with help to come here does help with my health and well-being.
I bloody love this creative writing class. There's some magical chemistry. I have made great friends. The salt of the earth. It's the best class I've ever been to, and I've been to a fair few as a mature student for nearly 20 years. I love every bit of that building. Ironically, being an old building is very physically problematic. But the people and atmosphere make it a unique, engaging environment. Especially the cafe!
On the way to the creative writing class today, I thought I would never take photos of the familiar. But taking pictures of places where I may be unlikely to return is quite common, like on holiday. Yet the familiar place can change over time, so why don't I take more photos of the here and now? So, on the way to class and back today, I took 136 photos from the car! After six years, I got a new iPhone with 1 T.B. of memory, so maybe I was showing off and went overboard with being trigger-happy. We even stopped by my old flat, around the corner from the college, to take a photo. I lived there for ten years before I was forced to move out due to my disability, care needs and inaccessibility, which I will discuss in another post. I have some photos inside the flat to dig out but realised I never took a picture of outside!
As Dad drove to college and back, I realised how much the city landscape had changed in just a few years. Places change like Life, and the body does.
The photo below shows city centre parking- hunt for accessible parking space.
Post 4 - View from YOUR window – 22.4.2023
I like a bit of sun, and it helps me manage my health conditions. Waiting eagerly today was the first time I have sat in the garden with our unpredictable British sun this year. I am indeed privileged to have a garden. My mind wonders back to COVID lockdowns. Many of the nations moaned about not being able to go outside. We started to see inequality divided from those lucky enough to have a garden to sit out to those in flats (apartments) with no outside space stuck inside. We appreciated the outside when it was taken away from us. Then, the lockdown ended, and such discussions disappeared. However, being inside most of the time is a constant life for those with chronic illness pre- and post-Covid. Life's a permanent lockdown for those with chronic Illness.
As I sit on my deckchair enjoying the view of the bird table, I am privileged to write this on my iPhone for part of my PhD. What about those with chronic illnesses in the science field?
I'm sitting here listening to Jenni's Podcast while writing this. I interviewed Jenni as part of my PhD. She's a Digital Creator, Social Media Influencer and Educator about Autism, Irlin Syndrome and Anxiety Disorder through having lived experience herself. She also works in education. Jenni is multi-dimensional. For example, she has different social media accounts for various aspects, from showing her magic to raising the profile of being a dual-heritage female magician with a disability in a white male-dominated industry. Jenni and her sister are also avid Stephen Mulhern supporters, and I learned the difference between the words' fan' and 'supporter' from them. Jenni was far more than an interviewee. She has been my guide through my PhD. Jenni's Podcast called 'More than a Label':
Just before I started to write this post, I looked at the Facebook page 'View from YOUR window', which began during lockdown and continued. Some people may consider the group concept 'too ordinary' and mundane. In practice, it's interesting, accessible, relatable, and educational. If that page were a research project, it would be top of the class and an original contribution. Members post photos of their literal view with sometimes a few sentences about themselves or their situation in Life. I find the diverse views and angles of the photos fascinating, as well as their story if they give it. Their physical position in the world has given me insight into them and their Life. The most educated person may dismiss the concept on the surface. It is trendy and has a considerable impact, with 1.5 million followers. Spending the time to see the content shows its original contribution. Here is the group link: https://www.facebook.com/groups/286866152596429/?mibextid=oMANbw
We all have different experiences, views and individuality. The research method I specialise in is autoethnography, which means exploring personal experience to show a broader sociological phenomenon or 'theme'. But I'm re-evaluating that concept, and maybe it's about celebrating and appreciating the individual. I started to write about these thoughts in an article found here: https://medium.com/@disabledphdstudent/why-ben-fogle-has-taught-me-to-re-evaluate-my-research-methodology-autoethnography-62ed80110d4b
The British weather is drastically changeable as Life and the body can be. So, I'm going inside as it's freezing now! I know I rant about the lack of disabled accessibility nationally within people's homes. But at least I'm privileged to have a home. With the cost-of-living crisis, many disabled people will increasingly find they don't even have a h, never mind one which meets their needs and outside Space. Sitting outside today has allowed me to take stock and be grateful for Life's small and large pleasures. What's your view?
The photo below: Garden with a bird table in the distance
Post 5 - Technology and the Body Grows - 23.4.23
A photo of the computer console Atari appeared on my Facebook news feed from a group called "Growing up in the 1980s". I was born at the beginning of the decade, so my childhood spanned the '80s and '90s.
My mind wandered back to being 13 and 14 in the mid-90s in my hometown, Leicester, in the U.K. I had the Atari for a couple of years by that point. I had a 52-in-one game for the console, which you put at the top, and you could choose the game you wanted. My dad and I were talking again by that point. Mum and Dad divorced at around 5. When they divorced, a court order was in place that Dad would pick me up after school on weekdays until Mum finished work. As I grew, my needs grew too.
Always protective, Dad insisted on walking me to school in Beaumont Leys at age 11, which was only literally down the path from home. Dad being with me always wasn't a great look to survive a tough inner-city school. But he was only trying to keep me safe, so I love him for that. As I strive for independence, cutting communication and a hefty price court case for Mum was needed when I was 12. Dad would still pop up to see how I was and lived only about five five-minute walks away in a council flat on the other side of Beaumont Leys.
I was crossing the not-so-invisible line between the council and the private homes. Down and up a hill near Babington School, down an alley with a fierce dog behind the fence on the corner. Up some steps and under the graffiti path underneath the road, up another hill with green grass and no burnt-out cars. Kids are smoking at the corner still. Quietness. Very little traffic. Or I could take the other way and cut through Oronsay Road shops, where I spent the first year of my life in a council flat with Mum and Dad before he went to prison whilst living at Cross-Hedge Close. This caused a bit of a problem for Mum, who was holding down a job at the Gas Board, which back then was prim and proper, a job for Life and even divorce wasn't heard of, never mind prison.
We regained talking correctly about six months after the court case saga at 12.
Sometimes, when Dad appeared after school, I packed the Atari and joysticks in a Tesco plastic bag. Dad and I would walk around to his flat, up the cold concrete steps. His flat was a mixture of DIY carpentry and a self-made indoor jungle garden. He could have achieved so much in life if given the right opportunities.
We played the 52 games in 1 on the Atari for about an hour before the walk back home to Mum. I always liked the game where the rabbit tried to cross the road without being run over for some reason.
It's incredible what difference relationships have when there's a choice. I would continue talking with Dad on the doorstep and go to his flat. We would see each other often. Mum, Dad, and I all get on well now, and I've called us the 'Three Musketeers' on many occasions. As I've become disabled with a chronic health condition, we have come together collectively.
Many disabled people are not privileged with such choices in their essential daily autonomy. For example, In the U.K., statistics show disabled people are twice as likely to be victim-survivors of domestic abuse. Yet, there is little specific provision to help them leave their situation. Furthermore, statistics do not include disability 'mate' or 'carer' abuse, which Katharine Quarmby has shown as an extensive epidemic theme across the U.K. U.K. statistics: Disability and crime, U.K. - Office for National Statistics (ons.gov.uk) Katharine Quarmby Scapegoat book: Scapegoat: Why We Are Failing Disabled People: Amazon.co.uk: Quarmby, Katharine: 9781846273223: Books.
The above figures are based on the adult population. A report has shown children are ten times more likely to receive abuse than non-disabled children. Such statistics do not include autonomy of care. I was privileged to make decisions about contact with my dad and choices about where and what we did together as a child pre-disability (after the court saga, aged 12). I'm not sure that would have been the same if I had been disabled back then.
Games and overall technology have advanced since the Atari days. Ironically, I see the console is now a collector's item. I wish, in some ways, I kept more old stuff. I wish I had taken photos of our family and the mundane daily. It could be a growing world of access rather than ownership. This has many positives indeed as it increases opportunities like me writing this and people from diverse backgrounds being able to read it for free. It's enabled me to communicate with the world because of chronic illness, being metaphorically chained to my bed indoors. It's also a sound archive storage for the future.
But always in the back of my head, I wonder, what if the internet goes down? The older you get, you always have a backup plan if things go wrong. Technology is great. But it's almost like the biggest contradiction for me. Technology helps so much with my chronic Illness and Life, but it frustrates me when things go wrong. The latest technology is always expensive but, after being around for a while, becomes more accessible. When I had the Atari, some rich kids undoubtedly had bigger, more advanced consoles. However, I am privileged to access some technology and the associated memories.
The photo below shows two joysticks, but only one came with our Atari. Dad gave me one of his old joysticks, which was much better than the one with the game. We often flipped a coin or took turns to see who used the better joystick!
The photo below is from the Facebook Group Retro Games Group Nostalgia, with a link to the group page.
https://m.facebook.com/story.php?story_fbid=3855753158039381&id=1583635131917873
Post 6 - Are potatoes cultural? – Sunday 23.4.2023
I'm sitting in my inaccessible kitchen on the perching stool the occupational therapist gave me. I'm peeling the potatoes for today's Shepherd's Pie. As my feet dangle down on the chair, my mind wanders back to the smell of earthy potatoes when Dad had his allotment in Beaumont Leys, Leicester. He rented two end patches from the council. Beautiful roses, vast vegetables including runner beans and award-winning marrows. He won first prize at the annual Abbey Park Show in our hometown. The show doesn't exist now. Then he donated loads to my school canteen. He put a lot of effort into that allotment and got a lot out of it. He sure knew how to get good produce for a man of limited means. My mind synthesises and links to an article I wrote in February 2022 called 'Spreading the Sandwiches' found here:, ‘Lemons’ (Apricot Outspoken Press, 2022). O’Pray’s poem was shown during a Creative Writing class session in February 2023. The Lemon poem doesn’t have a conventional structure. The subject divided the class. Some liked it, some didn’t, and that is okay., ‘Lemons’ (Apricot Outspoken Press, 2022). O’Pray’s poem was shown during a Creative Writing class session in February 2023. The Lemon poem doesn’t have a conventional structure. The subject divided the class. Some liked it, some didn’t, and that is okay., ‘Lemons’ (Apricot Outspoken Press, 2022). O’Pray’s poem was shown during a Creative Writing class session in February 2023. The Lemon poem doesn’t have a conventional structure. The subject divided the class. Some liked it, some didn’t, and that is okay.
Food has indeed become an explosion of blogs and journalism on TikTok. #whatiatefordinner or #whatiateinaday has become a big trend. I have put #whatiateformetea myself as a hashtag when uploading food content on TikTok. Every food content creator gives insight into different cultures, foods and socioeconomic backgrounds. I prepare the Shepherd's Pie as Mum did when I was a kid. Not as good as Mum made it, but with the same love.
One thing about this dinner is that it's great when you have a chronic illness; you can prepare it in stages and leave it before cooking. Clean-up is efficient and can batch cook, and Vicky from TikTok, who is an amputee with diabetes, talks about the relevance of Spoon Theory with batch cooking:
Sitting on the stool reminds me of a creative writing piece I wrote last year called 'Spreading the Sandwiches' which can be found here: (Subtstack link)
Photos below: 1) potato peels, 2) mash in progress, 3) Shepherd’s Pie, 4) full plate with a portion of Shepherd’s Pie (made with minced beef, not lamb mince, so maybe the technical word is Cottage Pie), Yorkshire Puddings and Broccoli.
My take on a Sunday roast: I follow a predominantly vegan diet to help manage one of my conditions but increasingly have to compromise due to chronic Illness and cost.
Post 7 - Disabled sport is accessible if you're rich (the redemption of thoughts) – 24.4.2023
Yesterday was The London Marathon. For a whole hour, they showed wheelchair participants. As per the previous post, I was preparing the Shepherd's Pie when Mum came in and said, 'Oh look, they have disabled wheelchair runners.'
'Yes, they keep showing that', I replied, rolling my eyes.
Later that day, I watched Father Andrew Mumby's TikTok video of himself at the London Marathon, watching on the sidelines. Father Andrew Mumby is a priest who regularly does vlogs about all aspects of his life and reflections on religion. He also does TikTok and lives Sunday church services on the platform.
Father Andrew said 'It's great to see so many supporters. Those here and at home spend the time cheering people on. That's what's important in Life. Let's be people's cheerleaders and support them.' Father Andrew Mumby's post: https://vm.tiktok.com/ZGJmxokrg/
Father Andrew Mumby (@father...andrew) | TikTok
I suddenly felt guilty for my earlier negativity and thought he was bloomin' right. I should have more positivity, especially for my community.
I was so pessimistic earlier because the T.V. reporter said the sports wheelchair cost £30,000. My mind wandered back to the Naidex disability event. My review on attending the event can be found here: https://medium.com/@disabledphdstudent/conference-review-series-naidex-disability-event-1a38b2958926.
Before Naidex, I always had an ambivalent feeling about the Paralympics. I always got fed up with people thinking all disabled people want to be Paralympic, that we must want to climb Mount Everest to be worthy disabled people. Then, there is a fear amongst disabled people that if they exercise, the companies who do disability assessments will deliberately misinterpret this and take away much-needed PIP disability support. Also, after analysing 15 episodes of 'Claimed and Shamed' and 'Fraud Squad' on weekday BBC1 TV, my findings showed that 11 disabled people were shamed, and investigations might not have revealed all the evidence. For example, surveillance by companies now includes social media, not just physical surveillance, which may present a different picture than the reality in yet called evidence during the programme, which can be found here: TikTokthe .
However, professional sports players are rightfully still eligible for PIP. Also, there is publicity by the government that exercising can help manage health conditions and ease the pressure on the NHS. Disability | Sport England Get Active: a strategy for the future of sport and physical activity - GOV. U.K. (www.gov.uk)
Yet there's a fear amongst disabled people, as found in this research report with many aspects, including what others think and loss of benefits if being active as their movements may be perceived as being that they don't have a disability: The Activity Trap - Benefits or Being Fit: Disabled people's fear of being active (activityalliance.org.uk)
So, sports and disability all seem a contradictory affair. We see a real need for more research into why disabled people are reluctant to do sports and presenting the narrative of this more in research. Also, sports costs. More for disabled people. Not to mention how they will get there.
Ali Jawad (whom I also did a biography for the Disabled Peoples Project Number 93, 2.9.2023). Through innovation, he designed the Accessercise App, the first app for disabled people. However, considerations/ research of disabled people's fears would maybe benefit from exploration to make it the success it deserves. Accessercise – Changing disability access forever
Anyway, going back to Naidex. Meeting Ellie Simmonds changed my negativity about the Paralympics. I heard the amount of sacrifice she made for the sport, which can be found in a biography I produced about her under my Disabled People's Project (DPP) here (Number 15 3.4.23 also on www.linktr.ee/disabledpeople).
Individual links to Ellie Simmonds biography (Number 15, 3.4.23) I completed for the DPP:
Facebook version:
YouTube Version:
TikTok version:
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Instagram version:
Ali Jawad Biography I completed on the DPP (Number 93):
Instagram:
TikTok:
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biography
YouTube:
Podcast: https://spotifyanchor-web.app.link/e/y6ApOZN62Db
At the back of the audience, a family raised a question at the end of Ellie Simmonds's talk at Naidex. The family raised that for Paralympic sports entrants, there are normally different category levels depending on the 'severity' of that disability. But for learning disabilities, there is only one level entry requirement below the I.Q. of 75. So, a participant with learning disabilities could compete with a fellow sportsperson of extremely varied degrees of learning disability compared to other disabilities, which are more of an equal playing field. The man who raised the question/point was with his wife and young adult son with learning disabilities, a Paralympic. They oozed self-made wealth. It then dawned on me that training for the Paralympic selection not only takes time and determination. It takes money.
One of my old supervisors, Dr Anna Claydon, suggested in one of her books that there nee research into the backgrounds of Paralympic sports participants. Is it more challenging to be a professional Paralympic the more intersectional spokes you have on the wheel? I talk about the relevance of Intersectional Theory regarding this question in my PhD Thesis. But in basic terms, if you have more elements of intersectionality, such as gender, race, lower socioeconomic/social mobility, and disability, the harder it seems to get ahead.
But at the end of the day, whatever background the disabled athlete is from, they deserve my support. I should have been like, 'Yes, isn't it fantastic there is now so much coverage of wheelchair sport' when I replied to Mum earlier. Every disabled participant has sacrificed and struggled to get where they are. But also, all of the London Marathon participants deserve my support. One way or another, they all have a disability story. Many of them would be disabled themselves, as disability just isn't being in a wheelchair. Those without disabilities or chronic health will also raise money for those with disabilities or health issues. So, the London Marathon is the biggest disability sporting event without realising at that initial moment of peeling the potatoes.
Also, the family at Ellie Simmonds's talk made a very good point. Many positive changes come from those with lived experience educating others and raising the profile of problems. Through that family campaigning, hopefully, they will make the Paralympics a level playing field for those with learning disabilities as it is for other types of disabilities.
Here is a link to a video I uploaded on TikTok and a screenshot of watching The London Marathon on BBC1
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The photo below of a wheelchair user participating in the London Marathon was shown on TV this year and is gradually getting more mainstream TV coverage. But with a £30,000 sporting wheelchair, how accessible is the sport for disabled people, putting aside the fear and contradiction argument?
Post 8 - The Real View with Chronic Illness – 24.4.2023
Posted in View from YOUR Window 24.4.23 (unsuccessful post to the group due to being a page member only possible on a private Facebook account)
Link to View from YOUR Window:
https://www.facebook.com/groups/286866152596429/?mibextid=oMANbw
The photo below is from my home research office on the left. View from my actual home office on the right with chronic Illness.
Post 9- Do I write it or Not? -25.4.23
I was just about to write a post about the upcoming talk I'm giving today. Then I realised that if someone read it before I gave the talk, I postponed that thought.
That is one of the many ethical dilemmas of doing this research project in live time. There may be a superficial question: 'Well, surely writing Facebook posts is easier than traditional research?' It's proved very complex and time-consuming. But that's ok because I like spending time on my research, and I'm used to complex situations having a chronic illness.
Ethics are indeed central to any research. In particular, autoethnography is a research method that positions yourself in the lived experience within life issues. I constantly question the impact on others or myself when I use autoethnography.
Also, doing a live project makes me think, will someone read it and change how they interact with me? So, it makes me question the validity. But then I realised no one cares. I don't mean that in the wrong way. I must carry on with this Project and not worry so much. Maybe it's in our DNA to worry? That could be a good thing in research. It's when you don't worry or have no feelings, and apathy is the time to worry!
Sometimes, worry can hinder progression in research or the ability to risk assess. Life is a balancing act. In my previous career in social work, we were very used to risk assessments. There were no risk assessment templates or any for students to use for the ethics application, so finding examples of good practices from other universities about consent forms to measure risk against 'others' and adapt them. I included a risk assessment model called The Signs of Safety, commonly used in modern social work, providing an opportunity for the researcher to assess the other two harms in research. I adapted the Signs of Safety model and developed a submitted template that got approved.
There are many transferable skills, from social work practice to ethics in research, as shown in the example above. Risk assessments, indeed, are becoming central in Life. I have the attitude that let's get on and do it, which has helped me persevere in this Project. However, risk assessments are central to my conditioning, and my experience in social work has enabled me to do this with situations. But also disabled people are great at-risk assessments, as we do daily. An article I did about the things that affect me going to places highlights this, as I am currently up to 72 items to consider:
https://medium.com/@disabledphdstudent/list-of-things-that-affect-me-getting-somewhere-7ea7ffab31f2
Has the worry of failing stopped me from doing many things in Life? We never seem to regret what we do, but we can regret what we didn't try. But there I go again- worry! We worry about being concerned as a culture or part of a human being!
Basic questions of Signs of Safety Model which can be transferable to research and ethics:
1) What's working well
2) What's not working
3) What needs to happen
The three harms in research are of equal importance, not just number 2:
1) Self
2) Others
3) Organisation
We also have the technology now to consider the 4th.
The photo below: laptop and (my
Previous old) phone on the bed
