Some reflections of grief, disability and Covid-19 | disability

tw // death, ableism, covid-19

As a world, we are individually and collectively struggling to process our feelings from this year, or describe them; the number of deaths almost unfathomable. Today, on International Day of Disabled People and Grief Awareness Week, I am reflecting on the different reasons I am grieving as a disabled person this year.

There is, of course, my personal grief. Back in May, I wrote an unpublished blog post, with this excerpt:

“There is something so unique about grief in this time. I don’t have any memories from my nan’s last four days of life. I don’t even remember our last conversation. My last memory of her is her being moved down the stairs by paramedics in PPE, not being able to touch her or say anything.

“We haven’t been able to hug our friends, or take time away for ourselves away from the rest of our family. We are surrounded by her things and the memories 24/7. I am having to answer question after question each night from my brother, who doesn’t understand that we can’t have all the neighbours at the funeral, that his uncle can’t come over from Canada.

“We are not alone. We are not a unique case. Tens of thousands of families across the UK, and hundreds of thousands across the world, are experiencing the same thing. For us, our grief does not directly come from COVID-19. But it is inherently linked.”

Yet there is more than that. As a collective, the disabled community is grieving thousands of those that we’ve lost, with disabled people in the UK making up around two-thirds of deaths. They are not only numbers, they are human beings who should not have been expendable just because they had “pre-existing conditions” – a phrase I have grown to despise when it is used to reassure people that it could never be them. It is intrinsically intertwined with the fear that it could be me next.

We are grieving months lost to shielding and self-isolation, watching as people around us complain about not being able to go to bars and restaurants when we feel unable to go to our local shop, or when we have been isolated like that for years regardless. We are grieving the fact that as soon as non-disabled people needed it, online learning and remote working became available overnight.

And aside from Covid-19, there is a unique grief that comes with being disabled. It is one that is so very individual, and often comes with guilt. I am proud of being disabled, there is no doubt about that. So when feelings of grief arise, I often feel ashamed for feeling that way. Though I think, on reflection, it’s natural and almost necessary.

I am allowed to be sad sometimes that I lost my teenage years to misdiagnosis, endless hospital appointments, pain and mental illness. I can grieve for the person I may have once become, whilst being grateful for and loving the person I am now. I can appreciate every step of my journey, whilst wishing that each step I walk in the world would stop causing me pain and fatigue. Those are valid feelings, and can co-exist.

Grief and disability are individual taboos, but they must be looked at in combination, too. They intertwine, for so many reasons. That is something more people should be aware of.

How has social action changed my life? | social action | #iwillWeek

This week is #iwillWeek, a week celebrating youth social action coordinated by the #iwill Campaign for which I am a 2019 Ambassador. You can read more about the campaign here and read my case study profile here. In a similar post to this one, I wrote specifically about being a Scout and this week I also had a post published on the #iwill site about inclusive social action.

Today for #iwillWeek the theme is evaluating impact, and with that no only comes looking at data, but stories as well. Some of us who are part of the most vulnerable groups of young people have found our home and life and passions within social action, and it’s so important that this is recognised.

I talk about parts of my story quite often, but in case you don’t know much about me – I was ten years old when I lost my best friend and began to find out that something was wrong with my body, and I was spending a lot of time in therapy and waiting rooms. It wasn’t really until I was in Year 9 that things really started to turn for me though, with me beginning to have panic attacks and starting my time in CAMHS. In Year 10 I went into a mental health unit for 4 months and in the same year, I became significantly more chronically ill and began to identify with the label “disabled”, as well as being diagnosed with Autism Spectrum Disorder.

There wasn’t really a proper start to my social action virtually – I’ve been tweeting about politics, mental health and LGBTQ+ issues since I was about thirteen, and blogged on and off about the topics too. It not only helped me with my identities, but let me support others and understand them. I love online activism because it gives me a purpose, especially in times when I can’t move from my room due to the pain I’m in.

My favourite part of my social action, though, is volunteering – and that’s what really changed my life and continues to do so. I began working with the Cub Scouts a month after I came out of the inpatient unit when I was still finding my feet again, and I fell in love with it immediately. The kids we work with are so intelligent and have so much to offer the world, and it’s so brilliant to watch them grow. Running badges that mean a lot to me or are similar to my own hobbies, like Disability Awareness, Chef and Scientist badges is always fulfilling, and I love running nights like ones for UK Parliament Week as well. More than anything, I love giving back to a community that has offered me the world over the last nine years and got me through so much.

During my time at Sixth Form I also worked with a GCSE Science class each week, and although it was such a different age group to work with (sixteen year olds are just slightly different to eight year olds), I loved it just as much – it provided challenges and definitely meant I built up my resilience, but there were also the lessons where something clicked or they worked well.

Lastly, my most recent time volunteering was with a little organisation local to home called the Square Peg Foundation who run stay and plays along with other events for disabled children and their parents. I helped at the stay and plays twice a week during the summer and I’m going to be helping at one of their Christmas events. It was such good fun to sit and play with cars or lego or helping with painting, but more than that I got to know the kids and their parents and I like to think that I might have had a little impact on some of their lives.

In the future, I want to take even bigger steps in my social action – I want to work with schools or other groups, talking about my experiences with mental illness, disability and LGBTQ+ issues, as well as my social action. I gave a talk to the staff at my secondary school about my ASD and it was one of the best things I did during my time there, and I’d love to work with more teachers or other adults who work with young people about it.

My social action is such a huge part of my life and I can’t imagine it not being so. I’ve gained friends, skills, and a life beyond my illnesses or my academics; I’ve got more confidence than that Year 9 ever imagined she would. I’d recommend it to anyone, no matter the organisation or charity, or whether it’s in person or online.

How to survive your A Levels… with a long-term health condition | disability and education

This is a part two to my previous blog post of tips about how to survive your A Levels, more specifically about surviving them with a long-term illness. Disclaimer: this is all from my own personal experience and I can’t claim that any of these tips will definitely work for you. For context, my main issues/symptoms include chronic pain, chronic fatigue/”brain fog”, sensory issues, co-ordination issues, anxiety and concentration and memory issues. I’m also aware of things that I was privileged to have at my school because it was a good school, as well as being able to afford a laptop, though I’ve tried to recognise that throughout.

Tell your school!!

Some of you reading might think this is a given or you might have little choice in the matter, but for others, this isn’t something that comes naturally particularly if you have something that is invisible and/or misunderstood. I honestly think that this is so important – so your teachers know how to support you (and potentially cut you some slack every now and then!) and so your school don’t take issue (or less issue) with you for taking any time off you need, whether it be to rest at home or for appointments, as well as getting any separate exam arrangements (I had a separate room, used a laptop in extended writing subjects, had rest breaks and had my exams on yellow paper).

I’ve always been very vocal with my teachers, but I know others prefer to go through the disability or pastoral team, and that’s fine too! The problem comes when no-one knows. If your school have issues with what you’re telling them, take in as many letters as you have (if you’re currently undiagnosed and/or awaiting specialist appointments, I’d recommend getting your GP to write you something, which I used to have to do).

Get your textbooks in a format that suits you, and/or make them suit you

For me, this was two-fold. My chronic pain meant that I couldn’t really carry textbooks, so in Year 12 I had my philosophy textbook on my laptop but borrowed one if there was one available (as I do struggle to read off a computer for that amount of text), and in Year 13 always borrowed one as there were a few more in the room. I did carry my history textbooks as they were much less heavy, but in Year 13 when I had both topics on the same day, I got a second copy of one of them through my school’s bursary to keep in the room (if your sixth form doesn’t have a general bursary, ask the disability team – you should be given one). If you have one, getting the Kindle version on an iPad/tablet might be a good alternative, or even on your phone.

The second part was making sure the textbooks worked for me. This meant highlighting in my history ones a LOT and scribbling in them, and in all of them, putting in a lot of post-its indicating topics/chapters/different types of information, and using a yellow overlay.

If you have a hospital admission…

I had two hospital admissions during my A Levels, although they were both planned and not at the conventional type of hospital – I had two inpatient pain management programmes. The first was at the end of Year 12 so it didn’t matter as much, but the second was in January of Year 13 so, a pretty big time of year. I co-ordinated my schoolwork through the pastoral Sixth Form team – two absolute gems – who emailed my teachers and had them send me powerpoints, worksheets, exam questions and anything else I needed. It was decided there was no pressure for me to get through any of it, but I would have it if I could, and then it’d already be there for when I got back. I personally think this is a good way to do it – everything is in one place and all teachers are aware of the situation.

It does make life a bit difficult, and I do think it might have affected my grades a little bit, but it’s not something you can change nor is it your fault. If you have an admission, it’s easier said than done, but try not to think about it too much – worrying won’t do anything and will likely make your recovery more difficult. Do some school work where you can – I only managed to do a little bit of my EPQ and a couple of lesson powerpoints – but don’t let it harm your recovery.

Managing therapies/medication alongside your studies

I had a lot of physio to be doing when I came out of my pain programme in January, and I found it really hard to keep up with it when I felt like I should be studying all the time. The way I eventually managed it was by slotting it into a certain time – for a while this was straight after school, as I often didn’t work straight away anyway, and later I used it as a study break. Experiment in the first few weeks with this and find what makes you the least tired and works best. I also ended up dropping down to only every 3 or so days during exams. If you have talking therapy or physio appointments which are more regular than other hospital appointments, I would recommend you trying to get them at the start or end of the school day (I used to miss form and PSHE quite often as that gave enough time to not miss a lesson) or during a free so you’re less likely to miss something. It’s not always possible, but every little helps.

In terms of medication, I used to have a midday dose of one of my painkillers so it would be in the school day. I ended up finding a rhythm where I would have it at lunch which just meant I had to shift my evening dose slightly. Set reminders or even alarms on your phone to make sure you take it – if you’re going to take it at lunch you could even put a note in your lunchbox, whatever works.

Learn how you catch up and revise best (How do you learn?)

Everyone has heard of the “different learning styles” of visual, audio and kinaesthetic, and that’s a good place to start – can you catch up by reading the textbook, or watching a youtube video, or from the powerpoint your class did? Or do you need the teacher to teach it to you? This can also partly come down to the subject, your ability and the teacher – do they put everything on the powerpoint or do they talk in more depth? And do you feel confident in your ability or need to ask a lot of questions? For me, I would generally catch up with history or philosophy by myself with the materials, but I couldn’t cope on my own with chemistry both due to my ability, my need to understand everything in depth and my endless questions, so I would have after-school sessions.

In terms of revision, it’s probably going to be trial and error for at least your first term, if not all of year 12. Don’t be worried if you revise for a test and it all goes wrong – that’s partly what year 12 is for, and to be honest, that happens for nearly everyone, illness or not. But it might be that everyone uses mindmaps, and you prefer simple sets of notes, or recording yourself speaking them.

If you like flashcards, or want to give them a go, I highly recommend Anki – you type the flashcards however you want (so you could do question and answer, or subtitle on one side and the content on another) and then when you revise it, you rate how you found the card, and it will use it’s algorithm to decide when you should next review each one. It also has a text to speech function, so you can have it read back to you if you prefer. It’s free on PC, but it costs a bit for you to get it on your phone.

I also recommend websites like GetRevising and TES, which have thousands of resources ready to go. I wouldn’t recommend never making your own resources, but if you’re having a bad time of it with your illnesses it can be really helpful, or if you fancy giving another type of resource a go. TES and Prezi are highly likely to have powerpoints for most topics, if you want a bit of an alternative from your teacher’s or if you haven’t got one.


Every long-term illness/condition and every person’s symptoms with each of them is different, so it’s impossible to generalise, but I hope these tips are somewhat helpful, and I wish you all so much luck for your A Levels! You’ve got this.