First things first I apologise for the radio silence on the blog front in the last couple of months. It’s just been a little bit of a crazy time with both university and my health, meaning that time for writing has been a bit scarce. But with just over a month to go till the end of first year, I am hoping to get back into the swing of writing and posting more often.
Something exciting that has happened in the past few months is that I have started volunteering with The LUNA Project as part of the online activities team. Becoming part of the team has done absolute wonders for my mental health; giving me both a focus beyond academics and a LUNA family who have become a massive support to me. Whilst at the same time enabling me to put energy into projects I am passionate about. You can find out more about what we do here.
The LUNA Project has also brought some opportunities for writing my way and one of these pieces is what I am going to be discussing a bit more today. This piece was originally written for the Glasgow University Food And Body Positivity Society (GUFAB) newsletter surrounding the theme of health.
From here on I am going to place a Trigger Warning for malnourishment, weight loss and diet culture.
My ongoing struggle with undiagnosed GI symptoms coupled with seeing an influx of adverts promoting a toxic diet culture post lockdown all over my social media accounts became the inspiration for this piece. There is no better way to explain it than a collection of thoughts on the subject matter, exploring body image, harmful “compliments” and illustrating just how distorted our society’s perception of health has become. Capturing the cyclic nature that is chronic illness and the mental strength it takes to continue trying when you are all too aware of the consequences that inevitably are coming your way.
Skeletal Bodies Normalised
It’s 2021 and we’re still glamourising malnourished bodies
The toxicity of diet culture; the online pandemic of our generation
Media perpetuating that small equals successful
Teens growing up believing that malnourished is beauty
Adults believing they need to shrink to succeed
I can tell you for certain this is not the case
For my malnourishment is not a choice
And it is far from pretty.
It’s the weight loss, the hair loss, the bruises galore
It’s the dry skin, sunken eyes and the cold feet
It’s the breathlessness, dizziness, the tremors too
The discomfort and nausea and pitying looks
And all people can say is they’d kill to look like you…
You wouldn’t not really if you had an insight
For this body right here is shaping my life.
Its doctors waiting before intervening even when it’s well meaning
Crippling symptoms with no known cause
It’s my GI system screaming at the slightest of sips
Framing food as the enemy as it passes my lips
But food is fuel you hear them say
You know this deep down but it’s hard to believe
When every bite leads to an unrelenting agony for hours on end.
So you continue to try each and every day
One bite at a time
Heat pad pressed to your stomach
Knowing the forthcoming consequences of every meal.
“Skinny suits you” they say
“You look so good”
But boy I don’t feel it
And I know for a fact I look poorly, washed out and drained.
So your well meaning compliment is far from kind
It shows how distorted our image of “health” has become
As an avid bookworm since childhood one positive thing to come out of 2020 for me was the additional time to read. The cancellation of A level exams last March meant that for the first time in a long while I could devote some of my limited energy to reading for pleasure instead of academic purposes.
To be quite honest I surprised myself with how many books I managed to get through. Having not picked up a fiction book until the March of 2020 and my move to university in September interrupting my reading spree, I still got through 35 books, the equivalent of 11325 pages. Certainly the most I’ve ever read in a year.
I know that many of you who read my blog are also of the bookish kind so I thought I would take the opportunity to share my top 10 books of 2020. They are listed in no particular order, given that even narrowing them down to 10 was quite the challenge. Attempting to rank them would have been near impossible.
Girl in the Window- Penny Joelson
Due to her ME Kasia is mainly housebound. She observes the world from her window, nothing out of the ordinary ever happens- until one day. Kasia sees what she thinks is a kidnapping but she wasn’t the only one who witnessed it. So did the girl in the window across the street. When she approaches the neighbours she is told there is no girl living there- can she trust her own eyes?
Witness the story unfold as Kasia tries to uncover the truth, whilst trying to navigate the very unpredictable nature of ME. From pacing to relapses and mobility aids it gives an incredibly accurate insight into life with ME.
Olive is struggling to cope with the world, the noise of daily life is just too much for her to bear. She’s getting closer and closer to the edge. Her mental health is plummeting and following a disturbing episode during her father’s birthday celebrations, she agrees to attend Camp Reset, the country’s first residential facility for mental wellness solely for young people. Struggling to engage in the program, Olive takes matters into her own hands devising a treatment program with the help of nerdy Lewis. Soon her idea snowballs into a large scale project focused upon the contagious nature of kindness. An incredibly valuable read for young people in today’s society.
Dear NHS: 100 Stories to say Thankyou- Compiled by Adam Kay
In a year where the entire country has become more appreciative of the NHS than ever before, Dear NHS has a vast array of contributors including: Stephen Fry, Emma Watson, Alex Brooker, Miranda Hart and Malala Yousafzai, sharing their encounters with the NHS either as patients themselves or as a concerned family member that NHS staff comforted during the uncertainty of their loved one being unwell.
The book is home to a multitude of heartwarming stories, that just made me so incredibly grateful to every member of staff working on the frontline in these unprecedented times. A particular favourite story of mine comes from Jack Whitehall. He describes the moment he met George, who was fighting Ewing’s Sarcoma at the Oak Centre in the Royal Marsden. Expecting to find George in bed Jack was concerned when this was not the case, he needn’t have worried as he soon found George and his brother playing football in the corridor. Jack then became the goalkeeper as George took a penalty. Jack thought to himself “whatever you do DON’T save this penalty. If you don’t let him score you are going straight to hell”… Jack only went and saved it.
Speechless- Kate Darbishire
Eleven year old Harriet has just started secondary school, she is subjected to daily ridicule which makes making new friends hard enough. But for Harriet things are complicated by the fact she has Cerebral Palsy. She is a wheelchair user and is unable to talk. For someone who has a lot to say this is frustrating. Fiery, determined Harriet becomes even more independent when her Grandmother has to look after her and her older brother Jake. Without parents around Jake begins to act strange, Harriet notices and knows he’s in trouble but what can she do when her Grandmother is too busy worrying about nail polish to care?
Whilst reading this book, I couldn’t help but notice just how well Kate handled the portrayal of Harriet’s Cerebral Palsy. It was only once I had read the book I found out the reason why. Kate’s daughter has cerebral palsy and spent almost a decade working in a special needs school.
Crippled: Austerity and the Demonization of Disabled People- Frances Ryan
Frances Ryan writes through harrowing personal stories about the austerity crisis and the direct impact this has upon disabled individuals in all areas of their lives. As a someone who grew up with disabled family members and then became disabled myself I have seen first hand some of the impact the austerity crisis has had not only within my family but among others in our local community. Despite already being aware of the issue, before reading this book I never realised quite how deep rooted and widespread the implications were and continue to be. The stark facts and figures throughout give real insight into the gravity of the situation the disabled community find themselves in.
Some Kids I Taught and what they Taught Me- Kate Clanchy
Kate Clanchy invites you to meet a classroom’s worth of pupils she has taught over the course of her 30 year teaching career. The book is an uplifting read, encompassing many of the qualities I wish to take forward in my future teaching career. Whether in the multicultural poetry group or in the inclusion unit a love for writing is fostered by all. We learn about the pupils’ backstories and how they came to be in Kate’s classroom. It is framed entirely around the young people and their beautifully insightful poetry. We watch the pupils’ lives be shaped through the lens of a teacher that loves them, fears for them, and respects them in equal measure.
Half a World Away- Mike Gayle
This tear-jerking read follows the story of two siblings who begin as strangers living completely different lives. Kerry was taken into care when she was a child , the life she left behind can never be forgotten. Now a struggling single mum, cleaning homes she could never afford, Kerry attempts to reach out to her long lost brother.
Noah never looks back to where he came from. The life he is is living now as a successful barrister, with his wife and daughter, miles away from the life he lived before he was adopted as a baby.
We see the relationship between the pair of them develop, starting a series of events that will have life-changing consequences for them both.
After the End- Clare Mackintosh
The novel opens with everyone in a courtroom, waiting for a ruling that will change many lives. Max and Pip’s son is ill, really ill. The doctors suggest that withdrawing care is the only option for their baby boy. Putting the decision into the parents’ hands they cannot agree. What follows is heartbreaking as the parents take each other to court. We view the story from mainly the perspective of Pip and Max as they grapple with the what ifs and fight for what they believe would be best for their darling boy Dylan. But we also hear from Dr Khalili, Dylan’s doctor who highlights just how hard it is to not get emotionally involved with her patient’s.
As I read the novel I found myself thinking what I would do in their shoes. I became so emotionally invested I was moved to tears at multiple points. No moment more so than after the end when I came to read the author’s note. And realised that Clare and her husband had themselves been faced with the decision of whether to keep their own critically ill son alive or withdraw his care.
They Both Die at the End- Adam Silvera
Mateo and Rufus wake up to the text that everyone dreads. Mateo and Rufus are going to die today, they don’t know how or when but they know it will be before the day is up. They begin the day as strangers and change each other’s lives over the course of this fateful final day. For varying reasons they both find themselves needing a friend for their End Day. Thankfully Last Friend is there for them both- an app to bring lonely people on their end day together. Mateo and Rufus are about to meet up for one wild final adventure,living an entire lifetime in a day
And the Stars Were Burning Brightly- Danielle Jawando
This novel highlights a lot of issues that are very prominent in today’s society. From male suicide and grief, to bullying and growing up in the age of social media. We follow the story of Al learning his brother has taken his own life. The way in which he searches in desperation for answers he may never know for certain and fights to keep the memory of his beloved brother alive. Whilst retracing the steps of his brother he meets Megan, who also wishes to keep all burning brightly among the stars in everyone’s memories’.
What were your top reads of 2020? I’d love some recommendations- leave a comment or tweet me @AspectsOfAmber_
Throughout the month of December of on Twitter (you can find me @AspectsOfAmber_) I have been taking part in #AccessibleAdvent. This was a hashtag created by @GinnyAndT as a way to get disabled people talking about ways in which the world could be made more accessible. For each of the 24 days lots of disabled people from a multitude of different backgrounds have tweeted 1 thing that would make life more accessible for them. A brief perusal of the hashtag gives a really insightful look into some of the barriers that are most prevalent for disabled people in society.
I thought I would collate all 24 of my tweets into a blogpost and expand upon some of them a little bit to explain why I deem them important issues to raise.
Day 1- I’d love to see less accessible toilets being used as staff toilets, cleaning cupboards or storage rooms.
This one may seem bizarre if you’ve never ventured into a disabled loo. But finding a mop bucket and cleaning supplies when you open the door isn’t a rare experience.
Day 2- More benches so on days when I don’t need my wheelchair I don’t have to sit on the floor to rest.
Day 3- I’d love to be able to use my limited energy however I want to without having to justify how I’ve used it to other people.
Some days I choose to use all my energy to bake as it’s something I enjoy, it will wipe me out for days. But I shouldn’t have to justify my actions when I’m flaring after- I am well aware of the payback.
Day 4- Lifts with buttons in a horizontal row rather than a vertical column so I can use them independently from my chair without having to stretch as high as I physically can.
Day 5- Wider doorways as standard! Since being an ambulatory wheelchair user, I’ve found most doorways aren’t wide enough. Even if I can squeeze through it’s difficult & I often crash into the frame it also takes up more cognitive energy navigating tight spaces.
Day 6- Accessibility information being made easy to find either on the website or by phone! This goes for shops, events, restaurants etc. I’ve lost count of how many hours I’ve spent searching for the most basic information.
Imagine having to call every single place you want to visit before you go- it soon gets annoying, there is no room for spontaneity.
Day 7- Having 2 steps to get into a building is not step free access… even if you have the world’s strongest staff who are more than willing to lift me and my wheelchair in.
Yes, you read that right. I’ve had offers to be lifted in my chair up the stairs- that is not accessibility!
Day 8- Smaller portions of the entire menu in restaurants being available as standard! Gastro issues mean I can’t eat a large meal but that doesn’t necessarily mean I want to eat from the kids menu all the time!
Day 9- Normalise rest in public places. The provision of a quiet place to sit or lie would be incredible in helping me manage my energy levels when out and about. Allowing me an opportunity to mitigate collapses or minimize crashes slightly.
Day 10- Don’t ever touch mobility aids without permission. My chair is an extension of me, you wouldn’t pick an able bodied person up and move them out your way so why do people deem moving a wheelchair user out the way acceptable.
Day 11- Card readers that can move being offered in all shops/businesses as standard! I’d love to be able to type my own PIN wherever I go for both security and the ability to make purchases independently from my chair.
Day 12- Your event should be accessible whether you know a disabled person is coming or not, it’s not particularly pleasant to disclose medical information to strangers daily.
Day 13- If you want to ask me a question, ask me. Don’t ask whoever I’m with and talk about me like I can’t hear you just because I use a wheelchair. It’s my legs that don’t work, not my ears…
I don’t need someone to speak for me, I am my own person with my own opinions. When you talk over my head it makes me feel invisible and infantilised.
Day 14- Schools to be more accessible. So many schools are completely wheelchair inaccessible. Furthermore schools are absolute sensory hell for those with sensory processing disorders. There are so many ways things could be easily adapted.
If I could have used my wheelchair at school I might have actually been able to attend more often.
Day 15- More wheelchair spaces on public transport. The fact most trains or buses only have 1 wheelchair space (often full of luggage/pushchairs) means if a pair of friends who both use wheelchairs want to go out together it is near impossible to get around.
It may come as a surprise but yes, disabled people do have friends, both disabled and able bodied and they do like to go out together independently.
Day 16- Please stop asking disabled people “what happened to them?” In the street not only is it none of your business, it may be deeply traumatic for the individual to have to retell the same thing multiple times.
Imagine retelling the most traumatic thing that has ever happened to you everyday to strangers. For some disabled people that is essentially the what the question “what happened to you?” means. For others there is no ‘story’ to tell they were simply born.
Day 17- I really wish that schools would get rid of the 100% attendance awards. They are incredibly ableist as well as incredibly demoralizing when as a disabled student you are fighting an incredibly unpredictable body to even make it into the classroom.
I vividly remember having attendance prizes for the tutor group & feeling so guilty when I was the reason that we didn’t get the reward but I physically couldn’t help it! I needed to attend part time and my hospital appointments had to happen, yet I was still made to feel guilty.
Day 18- Mobility aid adverts involving a variety of ages. Walking sticks and wheelchairs aren’t just for the elderly!
Day 19- Parents/Educators this one’s for you! If a child notices someone who is visibly disabled & makes a remark, don’t hush them- let them ask questions, most will be happy to answer, don’t make disability taboo, children are innately curious, nurture that.
Day 20- When designing products for parenting please don’t forget that disabled people are parents too! The lack of accessibility in this sector fills me with anxiety about being a disabled mum in the future.
Day 21- Not only do we make the world more accessible through our language choices, we make society more accessible through architecture and planning! Consult disabled people when designing things!
Day 22- I would love to see a day where I could go out with my friends and not worry about a stranger asking me if I’m out with my carer then telling me I’m “lucky” to have such kind friends when I correct them.
Day 23- I would love to see that the live streaming of lessons continues post pandemic for chronically ill students too ill to make it into the classroom! It would have made such a difference for me.
I was always told this wasn’t feasible, the pandemic has proved otherwise.
Day 24- A reminder that there is no one size fits all” when it comes to accessibility. If you don’t know what you can do to be more accessible then please consult disabled people! They will be more than happy to help!
That brings me to the end of my #AccessibleAdvent summary. I hope this post has given a little insight into some of the inaccessibility within society!
For the majority of the population the festive season is a time that brings with it unwavering joy and excitement. The prospect of some time off from both school and work to spend with family. The good food, festive films and gifts. Family traditions that have stood the test of time like the post-Christmas dinner walk, that no one wants to miss out on.
But for those of us with chronic conditions like M.E. the festive season comes with a few more challenges. Often making the time of year particularly anxiety fuelled. Christmas ends up being all consuming, permeating into all energy types. The cognitive tasks: coming up with gift ideas, the logistics of who is visiting when. The physical tasks: braving the supermarket, wrapping the gifts, eating the meal. The emotional tasks: the conversations, the socialising, the managing of other people’s expectations of you. The tasks listed are just a snippet of what could be a never ending list.
If you feel overwhelmed just looking at those examples, just imagine doing all of them and more on a battery that only charges to 20%, takes about 3 hours to run out and 3-5 days to recharge back to 20%.
That’s the reality of the festive season with M.E.
All the things often wouldn’t get done at all without the help of supportive friends and family coming to the rescue. Picking up those last few gifts on your behalf and wrapping them to save your precious energy supply.
Each year I always find myself in a situation where I overthink my every move in the weeks leading up to Christmas. Considering carefully the energy expenditure of each activity I do, spacing tasks throughout the week with bigger rest periods than normal. Trying desperately to walk the tightrope between managing okay and triggering a flare that could land me bed bound on the day we are meant to celebrate.
Well this year despite best efforts I am feeling far from fabulous. Pushing through to the end of the university term has finally caught up with me and I’m paying for it, big time. Despite Covid-19 regulations minimising some of the in person plans we had as a family, something I’m sure we have all learnt this year is that Zoom fatigue is a very big problem! So the day is still going to be alot for my body, that is very much finding being a semi-functional human hard right now.
In an attempt to stop myself making comparisons between this year and past years because of both Covid-19 and my health, I’ve compiled a little list of reminders to help me make it through the festive season amongst the uncertainty. So I thought I would share them just in case your body, brain or both are being particularly bothersome at this time of year.
It is okay to rest- The day doesn’t have to be 100 miles an hour, taking yourself off for a power nap or lie down is more than okay
You are allowed to prioritise what’s best for you, even if other people don’t seem to understand- I think sometimes it’s easy for the people around us to forget that chronic illnesses don’t just disappear because it’s Christmas (if only).
You aren’t the only one going through this- Lots of people find Christmas difficult for a multitude of reasons, even those without chronic illnesses .These people may be able to socialise or trudge round the shops, but it doesn’t mean they are having the best of times. All is not how it may seem from a social media post.
You are not obliged to tell extended family anything you don’t want to discuss- This includes discussions around your health, you don’t have to tell them no matter how insistent they are if you aren’t comfortable to do so.
You know your own body better than anyone, there is absolutely no need to overdo it for the sake of meeting other people’s unrealistic expectations of you.
You are doing the best you can.
The impact of M.E. at Christmas doesn’t stop when the day ends. There will always be the payback days no matter how careful you were not to over exert yourself. Don’t beat yourself up about this, you can’t help it. Take the next few days to rest and engage in gentle self care, being kind to yourself and giving yourself the same amount of grace you would give a friend going through the same.
Festive fatigue and M.E at Christmas is something I don’t think is spoken about enough. If you are reading this and don’t have experience of M.E I hope this has given you an insight into how much effort 1 day can be. If you too have M.E. I hope this has resonated with you in some way or another.
Wishing you all a Happy Holidays and a Very Merry Christmas to all who celebrate!
Long time no blog, it’s been a while since I last uploaded on here. In all honesty I’ve struggled to find the time to write since starting university in September. So I’ve taken advantage of the little let up in work being set during reading week to get a couple of posts written because I’ve missed posting here.
Today I want to talk about Disabled Students’ Allowance (DSA).
DSA is a government grant available in the UK for disabled students. It is available for people with a wide range of conditions including: autism, mental health conditions, physical or chronic illnesses and specific learning disabilities (SpLDs) such as dyslexia. Even if you do not personally identify as disabled you may still be eligible so it is definitely worth a look. Especially as it has been found that in 2017 nearly half the people eligible for DSA did not make a claim.
DSA funding can be used to fund a range of specialist equipment, software, mentoring and can cover extra academia related costs incurred as a result of disability. It aims to place you on a more level playing field to your able bodied peers. It is not a means tested grant and you are not required to return any of the equipment you are granted at the end of your degree. It is yours to keep. There are no costs; except if you live in England and are granted a laptop, you are required to pay £200 towards it (as all students, not just disabled ones require a laptop).
I applied through Student Finance England (SFE) so this is the application process I am going to be describing, it may differ slightly if you apply through an alternative funding body. When I was completing my main application to SFE I was asked if I wanted to make a DSA application, I then had to fill out a short form. The main step is compiling evidence of your condition(s) and how they affect you in education. This may take the form of clinic letters, diagnostic reports or your ECHP if you have one. Something to note here is that your evidence needs to be from after your 16th birthday, so if you were diagnosed previous to that you may have to pay for new evidence.
After submitting my evidence, I was granted DSA for my Myalgic Encephalomyelitis (M.E.) and was then invited to book a Needs Assessment. The thought of an assessment about my condition filled me with anxiety after previous experiences applying for PIP, however I was quickly reassured by people who had experienced a needs assessment that it was nothing like a PIP assessment- they were right.
My assessment was conducted via Skype due to the Covid-19 pandemic but they are usually in person so you can test out any software and equipment. My assessment took about an hour and a half, but this can vary. My assessor was lovely and very understanding when I needed to take a break due to fatigue, she also didn’t bat an eyelid when I needed to lie on the floor for a minute. It was more like an informal chat. She asked about my condition, how it affects me in my studies and about any support I had in place whilst attending school or college. She then talked me through her suggestions of things that DSA could supply to help me and modelled some of the software. She was incredibly knowledgeable and suggested things to help that I hadn’t considered before. After the assessment she then collated her recommendations into a report which advocated for as much support as possible by justifying my need for each item she had recommended. I was then sent a copy of this report to review and check I was happy with it before she submitted it to the funding body.
It took around 2 weeks for SFE to process my report. They then sent a DSA2 letter which outlined the support I had been awarded- I received everything that my assessor had suggested, which I am told, is what happens in most cases.
I was awarded a lightweight laptop and printer. The laptop is great and really easy to use. My assessor highlighted to SFE the importance of the laptop being light weight due to muscle weakness and I’m very grateful she did as it has made such a difference. The printer is also brilliant and has saved me a lot of energy as I don’t have to venture to the library every time I want to print something. Alongside the printer I was also granted an allowance for consumables such as paper and ink- you purchase this yourself, keep the receipts and claim the money back from SFE at a later date.
The laptop arrived with the software I had been granted already preinstalled ready to use. I was granted 4 pieces of software. The first being Read & Write (text to speech and highlighting for PDFs etc), Ayoa (mindmap software) Dragon (dictation) and Sonocent (recording). At the moment I use the first 2 most as online learning means many of my lectures and seminars are recorded already. To help me use the software I was also granted a microphone that attaches to my laptop to record from and a bluetooth headset for dictation as well as technology training with someone from the company to show me how to get the most out of each software. I was also given a high quality pair of noise cancelling headphones to help with my sensory sensitivity in communal working areas, I haven’t been able to test them out properly yet due to covid-19 restriction but they have been very helpful in keeping me focused whilst studying in halls.
Another thing that was recommended by my needs assessor was an ergonomic equipment assessment. This involved a Zoom call with a company who provides office equipment. We talked through the things I found difficult about working at a desk and they suggested pieces of equipment they could provide to help. The report from the company was then sent to SFE to be approved. Someone then came out to my house, well garden because of the pandemic, in full PPE to take my measurements. The equipment was then delivered 3 weeks later to my halls of residence, where again in full PPE, I was talked through everything I had been awarded.
I was granted a wide variety of equipment. Including an ergonomic desk chair, which is built specifically to my height and weight as well as providing support in targeted areas of my spine. A foot rest that tilts to help with the circulation in my legs. A laptop stand, wireless keyboard and adapted mouse. A lap desk, bed wedge and book seat- these have been particularly useful when having to study from bed. All of which is now mine to keep at no cost.
This equipment has been invaluable during the period of online learning. Don’t get me wrong being at university has taken a toll on my health- that’s a post for another day- but the equipment provided by DSA has enabled me to make the best start at university possible. So, if you think you may be eligible it is definitely worth a look.
I hope this has been helpful in outlining the process, making it appear less daunting and giving you an insight into some of the support available.
Starting university is a daunting prospect for everyone, but as a disabled student I can’t help feeling as though some of my main concerns and worries are quite different to those of my able bodied peers. Today I wanted to share 5 of the things I have done/am doing to ease my transition into university life as a disabled student.
Introducing new tasks into my daily routine
Moving away from home is a huge deal for anyone, but as a disabled student the move comes with additional challenges. On top of getting myself to lectures, moving into halls means I will have the responsibility of cooking for myself and cleaning my own space. Something I’ve haven’t really had to think about when living at home as my family would prefer I save my energy for other things. So in the months before starting university I have slowly been adding some of the new activities into my day and looking at ways I can reduce the exertion throughout. Some examples include using lightweight saucepans, pre chopped vegetables and sitting on a chair when cooking.
Getting into contact with other disabled students current or graduate from the university
Hearing from other disabled students who currently study or have studied at the university is invaluable. Whether it’s finding out the most wheelchair accessible routes across campus or knowing the quieter places to study, first hand experience is the best way to find out. It may be that student support services or the disability representative of the Student’s Union are able to put you in contact with other disabled students. But if not you might have to dig a little deeper. Within the chronic illness community online many disabled students are sharing their stories and would be willing to chat to you about their university experience if you pop them a message.
Pippa Stacey, a chronically ill writer and blogger, has collated a list of connections and contacts for disabled students, which you can find here. All the individuals listed are either current or graduate students who have offered to be a point of contact for prospective chronically ill/ disabled students.
Whilst you might have different conditions, they have experienced life at the university so may be able to give you extra pointers or advice as to what to expect.
Researching support available
My sixth form was not the most knowledgeable when it came to information about support available at university for disabled students, telling me to apply for Disabled Students Allowance (DSA) but not telling me what it actually was. That was when I started to do some research.
It was then I purchased University and Chronic Illness: A Survival Guide written by Pippa Stacey. The book explores every aspect of university life from the perspective of a chronically ill student, giving tips and advice of what to expect, highlighting things to consider you may not have thought of before and the support you are entitled to, including the DSA process. I know that I will come back to the book many times throughout my degree, it really is an incredible resource and I would highly recommend it to any chronically ill person who is trying to navigate the world of higher education. You can find more information about the book here.
As I had disclosed my disability within my UCAS application and consented to having this information shared with the universities I had applied to, student support services contacted me via email. They outlined the support that they could offer and also made sure I was aware that I was entitled to DSA. I was assigned a member of staff to be my key point of contact for any questions or queries, I really appreciated this as it meant I didn’t have to keep explaining the same things in multiple emails to different people. Once I accepted my offer the process of getting my Academic Access Plan (AAP) began.
Preparing information to share with lecturers and flatmates
At the university I am going to be attending you work with student support services before you arrive to create an Academic Access Plan (AAP). I had to fill in a questionnaire and provide some documentation from a medical professional about my conditions, how they impact me and any access arrangements I would need. All this information was then collated to form my AAP. With your consent this information is then shared with your lecturers to make them aware of how they can best support you.
I have been lucky enough to find over half my flatmates through the applicant facebook group set up by the university. So over the past few weeks we’ve been getting to know each other. I had been quite anxious about disclosing my disability to them, not sure when the right time to bring it up would be. In the end one of my flatmates brought up the fact they had some health conditions, so me bringing up my M.E and ambulatory wheelchair use was not a big deal. As a flat we decided to write a brief summary of our conditions, what to do in an emergency situation and how other people can help if we are struggling so we know how to support each other.
Creating a written flare plan
This was something suggested to me by my M.E specialist. Whether it be a routine that has helped you navigate your way out of a flare before or certain things you do to help manage increased symptoms. Having a written plan to refer to that outlines the ways in which you’ve mitigated flares before should help it to be less overwhelming if it happens during the academic year. If you feel comfortable sharing this plan with a flatmate it will allow them to know how to help you through the flare. Whilst creating this plan won’t stop the flare from happening it will remind you of the practical steps you can take to help yourself survive the storm.
I am hoping that taking these steps to prepare will help make the transition to university that little bit easier to manage.
Off of the back of my post about disability representation in the classroom I decided to have a look into some books that included disability representation. I have been a bookworm for as long as I remember but before I became disabled myself disability representation wasn’t something I necessarily looked for when buying and reading books. It is only in the last few years I have come to realise just how important representation of all types is. It is well known that children look to literature as a source of identification. They are able to associate themselves with the characters they read about and these associations begin to shape their beliefs about themselves from a young age.
In an ideal world, literature would accurately reflect all demographics within society. However this is not the case. Whilst in recent years progress has been made, many marginalized groups are still underrepresented within literature. One of these marginalised groups is disabled people.
So today’s post is the first in an ongoing series about books I’ve read recently which have included disability representation.
The first book I wanted to write about is Girl In The Window by Penny Joelson.
Throughout Girl In The Window I really enjoyed how the story of Kasia’s recovery from Myalgic Encephalomyelitis (M.E) was weaved alongside the main storyline. The novel explains how Kasia developed M.E after a bout of tonsillitis. Initially leaving her house bound, isolated from her peers and the outside world.
As someone with M.E I was a bit sceptical as to how it would be portrayed but it was done amazingly. Highlighting the physical, social and emotional effects an ME diagnosis has. Many parts of the book resonated with me greatly. A particular part that I could relate to was when Kasia had an event that she really wanted to go to but couldn’t physically manage. Her parents then suggested using a wheelchair to help, explaining that the chair could be used as a tool to help lessen the post exertional malaise (PEM).
Throughout the novel many aspects of living with M.E are explored; from the importance of pacing and tackling activity in manageable chunks to the debilitating nature of PEM. As well as the isolation, loneliness and overwhelming desire to lead a normal life felt by many sufferers.
As the novel progresses Kasia makes gradual progress, establishing a daily routine that allows her to stabilise a baseline from which to build. The book accurately portrays how the journey of learning to manage a chronic illness is never straightforward; it’s not without the aspect of trial and error, the relapses and the setbacks. Sometimes no matter how careful you are, flares can still happen without an obvious reason.
The frustration flares and PEM cause is also portrayed brilliantly. The way in which us chronically ill folk often seek to blame ourselves for the increase of symptoms “because we should have known better than to push it.” But in reality we are seeking to enjoy opportunities and events as much as the average healthy person. So sometimes pushing it a little bit to have some fun is needed, it makes us human.
It wasn’t until after reading the book I realised that Penny herself had lived experience of life with M.E, falling ill aged 25 whilst working as a teacher. After over a decade of varying symptom levels Penny deems herself as better “about 60 to 70 percent” explaining in this piece “I live a full life and I value every moment but I have limitations. I don’t have anywhere near the energy of the average person my age. I can’t work full time. If I do too much, the leg pain and swollen glands and exhaustion return. I still have to be careful. I am better – but not recovered.”
This book is incredibly important to me. I won’t lie, reading it made me particularly emotional. It was the first time in a long time I had been able to fully identify with a book character with every part of me. To see my struggles reflected back to me in the pages, something I had missed for a very long time.
The other night I found myself in a bit of a Twitter rabbit hole. I came across a blog post called “Disabled? Or disabled by Society?”. The post raised the subject of disability representation within the school curriculum and classroom.
This got me thinking about the representation of disabilities within my own education thus far. I came to realise that this was incredibly limited. On the rare occasion disability was raised in the classroom the instances fell into one of two categories; either highlighting the discrimination disabled people had faced throughout history or depicting them as some kind of superhero, defying all the odds, achieving so much despite their limitations. A particular memory that stands out was during an assembly in the build up to the 2016 Paralympic games. The assembly was about overcoming adversity, we had sat and listened carefully as a member of staff talked about how a collection of successful, able-bodied people had overcome adversity in their lives. The assembly concluded with us watching this Channel 4 short film. As we sat and watched, looking around you could see faces change, people were shocked at the skills these disabled people had. As the film ended the member of staff returned to the front and said the words “See, there are no excuses- if they can do it so can you”. The idea of disabled people being used purely to inspire us didn’t sit right with me, even though at the time I was able-bodied myself.
I began showing my first symptoms of ME a few months after that assembly. Being unwell myself brought the lack of disability representation in all aspects of life to the forefront of my mind. Suddenly, I couldn’t see myself reflected in the mainstream media anymore. There were no longer book characters with whom I could fully identify. No models in magazines showing me what the clothes they wore would look like sat in a wheelchair. In films portrayals of disability are often dodgy at best. Disabled characters (usually played by able-bodied actors) tend to fall into one of two groups: the superhuman, constantly overcoming their disability; and the person who is constantly miserable, asking “why me?”. That is of course if they make it through the film without dying!
As I progressed into sixth form the disability representation on the whole became even more scarce. However, around this time I began to feel more comfortable with my identity as a disabled person. I began starting conversations that I felt needed to be had myself, bringing the perspective of disabled individuals into class debates, offering to answer the questions of both my peers and teachers to the best of my ability. A stand out moment for me was educating my sociology class on the process of claiming disability benefits. They were extremely shocked to find out that the process did indeed mirror to a degree the scenes in the film “I, Daniel Blake” that they had deemed as “ridiculous” and “incredibly frustrating” when watching it in the lesson prior.
I deem myself lucky, to a degree, that I became disabled at an age where I could better understand why the representation wasn’t there and could articulate my feelings on the matter to educate others. But I can’t help but worry for the younger disabled children who won’t understand why they don’t have a character to dress as on world book day who looks like them.
Don’t get me wrong, things are moving in the right direction. I’m sure if I were to go back to my primary school the amount of representation will have grown significantly since I left 7 years ago. There are so many more books and resources promoting diversity and inclusion now that building representation of all minority groups into the classroom has become somewhat easier than it was. I am so hopeful for a future where we will no longer be surprised when the protagonist in a story is disabled and a spectrum of disabilities are represented in the curriculum as standard- not just because there is someone in the class who uses a medical device.
To any educators who may read this, please ask questions!
If you have a chronically ill/disabled student in your class or tutor group and have questions- ask them! Most students will happily answer or soon let you know if they aren’t comfortable doing so. I always appreciate when teachers take the time to ask questions in order to educate themselves a little more about my illness, it makes me feel seen. It also helps the teacher to support me better. Lastly, I guarantee that I won’t be the last chronically ill student you teach, with every question you ask knowledge is gained and that should make supporting the next chronically ill student who enters your classroom that little bit easier.