How things need to change in the next decade – #LetterTo2030 | social action | #iwill

No matter your political opinion, it has to be recognised that some things need to change within the next 10 years for young people in more ways than one. With the beginning of the decade, this month, the #iwill Campaign are asking us Ambassadors and Champions to share what is important to us. I want particular change within health, equality and education – but what needs to happen?

  • Proper mental health funding

Mental health has become a buzzword for the government, yet it still isn’t being properly funded. It’s months before you can be seen and once you are, the chances are you’ll only get a 6 week course of CBT. When I entered the mental health services in 2015, things were a lot better than they are now and it’s sad to have watched things deteriorate instead of get better at a time where there is far more awareness than there was then.

CAMHS needs funding far more, so that mental health is better in young people and teenagers, and to also support this, there should be a trained mental health nurse in schools. Adult services also need to be better, and it shouldn’t be so hard to get a referral. There also needs to be better communication between mental health services and A&E, and better support when you go to A&E with a mental health issue as currently they struggle to know what to do even though we are often told to go there if we have an issue out of hours.

There needs to be change within inpatient mental health units. They currently cause trauma to many patients within their services. They also need better funding, and deserve more support and better facilities. Many of us want to continue our education during our time in the units and the teachers are so passionate, but there’s only so much equipment and they can’t know everything about every subject that each individual studies.

  • Parity of all illnesses – chronic, acute, mental and physical

Everyone says “mental health should be seen as just as important as physical health” which is absolutely true, but chronic physical health issues are not treated equally to acute physical health issues (like a broken leg, which is often the example used) which is continually ignored when parity of esteem is discussed, and the term was used liberally by several political parties during December’s General Election.

It took me 7 years to be diagnosed with HSD after seeing more than 20 doctors and physios, and I had to travel to London for several of these appointments. This is because symptoms are overlooked or disbelieved. What I want to see is parity of acute and chronic illnesses both physical and mental – a broken leg wouldn’t be ignored and neither should depression… But similarly, neither should chronic pain. There also isn’t parity between more commonly discussed mental illnesses and more stigmatised ones such as BPD, which is also hugely important.

  • Accessibility for all (and even more awareness)

Accessibility is beginning to come a long way, but it’s far from the end of the road – there still needs to be more provision made for invisible disabilities, including chronic illnesses and autism. There needs to be better support in schools, including more funding for SEND support. There needs to be a better benefits system, that doesn’t say people are fit for work when they clearly aren’t. There needs to be less discrimination over who can access blue badges or bus passes (because even though the rules have changed on blue badges, people are still being refused them). Disabled people deserve better.

Ableism is still very active in society too, and it’s often looked over in discussions of discrimination. More awareness of different types of disability is needed, even though the message that not all disabilities are visible is spreading, and there needs to be more awareness that disabled young people exist! Using mobility aids, using disabled toilets and asking for help as a young person can be extremely intimidating.

  • The opportunity for everyone to get as much of an education as they want

There are so many reasons that young people don’t get an education to the extent they would like, and that could be just their basic secondary education or a university education. It might be because they live someone that education isn’t a given right and they can’t access it; because are a young carer; because they can’t afford it or have to get a job, or because an education isn’t accessible to their disabilities, and this shouldn’t be seen as acceptable regardless of a child’s circumstances. Education should be a universal, accessible right.

  • Climate change has to be stopped… or the rest becomes pointless.

It seems like the most obvious thing that needs to be changed in the next 10 years, but it has to be said – if the government don’t start taking climate change seriously, 2030 might be a dream in itself.

I’ve got big hopes for the next ten years, and I hope that these things aren’t just lofty dreams. Using the hashtag #LetterTo2030, tell me what you think needs to change in the next decade- because young people can help change the world, and we don’t have to wait until we’re old enough to be in power to do it.

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.

REVIEW: The Lovely Bones (Birmingham Repertory) | theatre

The stage at the beginning of the play before various elements were added - it shows a scene that looks like a cornfield, with a chair in front. The stage is mostly blue, and there is smoke coming from either side
The stage at the beginning of the play before various elements were added – it shows a scene that looks like a cornfield, with a chair in front.

This play has significant trigger warnings for rape and murder, and are therefore mentioned in this review.

Just like when we went to see Amélie, I took my mum to see another play that we had little to no knowledge of. My mum has been meaning to read it for a long time, but we went in only armed with little summary on the website. And I’m so glad we did!

Firstly, we haven’t been to The Rep since the refurbishment a few years back, and it’s such a lovely theatre! It’s very accessible and it isn’t as intimidating as some theatres can be. It also had the best theatre ice cream I’ve had, so if that isn’t a pull to it, I don’t know what is. There’s a few plays on in the next few months that I’d really like to see there, so I’ll definitely be back soon. One thing I’d like to highlight about this particular play is that it does have some very intense strobe lights and the openings of each act are very sudden and loud, so be aware of those things if they would be issues for you.

The Lovely Bones is set in Pennsylvania in the 70s/80s, and in heaven. Susie Salmon is fourteen and is on her way home from school when an old man (Mr Harvey, played by Nicholas Khan) rapes and murders her. She is taken to heaven, where she has a support worker (Franny, played by Avita Jay) and she spends the duration of the play watching her family and friends attempt to get on with their lives without her, as well as her watching the further actions of her murderer.

I loved the set for this show so much. The set design is instrumental to this show in making the division between life on earth and heaven seamless on the stage. When she reaches heaven, Franny places down a boundary and throughout the play Susie tries to leave to no avail. Those on earth mostly stay outside of this boundary, but also move across it showing the freedom that they still have in comparison. Other elements of the set design are that the scene is mirrored onto the wall of the stage and there is a raised part at the back which often showed the characters silently doing something else whilst there was more action on the stage. This really added to the effect of the story especially when it showed the actions of Mr Harvey.

This is a show that uses several of the actors for the two or more parts but we honestly didn’t properly notice that until we were reading the programme afterwards – it’s very subtle and costuming and hair and make-up done so well that you are less likely to notice this throughout. A particular example of this was Leigh Lothian, who played Ruth and Buckley; I genuinely didn’t realise there were the same person because I was so invested in the story and it was done so well. This is a cast that are extremely versatile and truly talented.

A particular talent in the cast is is Fanta Barrie, who plays Lindsey. Her acting was so convincing and she showed so much emotion throughout that I just found her to be such a standout member of the cast; I could feel her pain and love and anger. And naturally, how can I not mention Charlotte Beaumont who played Susie – having to be on the stage for almost all of the play, she shows so much raw emotion the it is just beautiful to watch particularly showing a denial to acceptance of her own death. It is poignant and beautiful in the saddest way.

Overall we really love this show. The themes of it are so important to discuss in this time period, even though it was original set in the 70s and 80s. it is beautiful, it has a great soundtrack and I would honestly say that if you can get to a performance of this you should. I will definitely be reading the book and watching the film in the next few months to see how they compare. I adored almost every minute of the show – every aspect of it works together to create the most beautiful play. An easy 5/5 for me.

The Lovely Bones is on tour around the country, so if you’d like to see it near you, find out where it going here.

Why medication is not the enemy | mental health / chronic illness

Disclaimer: as said towards the end of this post, I am not advocating for the use of medications, I am only discussing my personal experience and the stigmatisation of such medications.

A couple of days ago an opinion column was posted in the LA times, discussing one man’s experience with attempting to come off anti-depressants. As a community, many people have written threads on the issues there are within the piece such as this one by @coffeespoonie including his use of addiction and dependence as interchangeable terms, as well as implying that an anti-depressant is not a prescription drug. Whilst these threads have taken apart the piece very effectively and better than I ever could, I wanted to talk about my own experience of long-term medication use, why it isn’t the enemy, and how much it annoys me that medication are continually demonised in traditional media.

I’ve been on some form of mental health medication since I was fifteen. Originally, for six months beforehand, my GP placed me on a beta blocker as a measure until I could see a psychiatrist, who put me on my first of many tries at an SSRI. I was very unlucky and had a major reaction to it, but it does come down to being unlucky – what happened to me would never happen to more than a couple of people. When I then went into inpatient care a month later, I was instead placed on another form of anxiety medication and, although I’ve tried several others over the last four years, it is the one I am still on today. I couldn’t imagine life without it.

Actually, that’s a lie, because I know what my life is like without it, where there have been periods off it, as well as my life beforehand. I was in Year 9 at a grammar school when I started having panic attacks and they quickly became daily, and often twice daily, occurrences which meant I was out of lesson after lesson and often unable to even make it through the gates. I moved school, and though my anxiety was reduced they were still happening. Fast forward two years of therapy, I attempted to come away from my medication, and it just wasn’t sustainable – my brain moves at a pace that I often can’t even explain; I have five trains of thought running at once, most of which aren’t even relevant and causing unnecessary levels of panic, at such a fast speed I can’t focus on them.

I’m at the best I have been for four years at the moment; those two years of therapy had a huge impact, and in the last year I have had my chronic pain management programmes which were quite holistic and focused a lot on my anxiety. Apart from during exam season, my panic attacks have been increasingly rare. But with my move to university, I don’t know how I am going to be. Often, doctors question me as to when I’m going to come off the medication as if it’s simply for an acute illness. Mental health medication is often seen as the last resort, something avoided if at all possible, and whilst I am a big advocate for therapy, I don’t think it should be demonised the way it is. Therapy got me out of crisis, but my medication is what keeps me afloat. If anything, it was my medication which meant I could get the most out of therapy.

In a similar vein, I’m also on a long-term painkiller, which are equally as demonised in the time of the opiod crisis. It began with 6-8 tablets of paracetamol a day, before endless different painkillers that were all completely ineffective or gave me side effects. Eventually, I found an NSAID that seemed to at least take the edge off the pain and I was on that until I finally saw a specialist rheumatologist who recommended the one I have been on for the last two years. I could probably survive without it – but could I live? Could I have done my A Levels? Almost absolutely not.

I am not advocating that people turn to medication before therapy, whether that be talking therapy or DBT or physio, or even advocating it’s use at all. I’m not a doctor, and I will never recommend a certain medication or slander those which have caused me issues, because everyone is different. All I want is for it to stop being so stigmatised, particularly by people who have never experienced the trauma and issues that mental health problems and chronic pain can cause.

Am I dependent? Or even an addict, as David Lazarus implies in the LA Times? Perhaps I am dependent. But I am no longer constantly frozen by anxiety and out of action due to pain and panic attacks. Is that such a bad thing? Those who say that my age means I should not be depending on medication are correct, because no I shouldn’t have to be – I don’t want to be either, but I have chronic and mental illnesses.

And yes, there is significant irony in the fact that I have been sat writing this piece for two hours and have only just realised that I didn’t take my meds this morning, but here we are. Let this be your reminder!

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.

How to survive your A Levels, by a disabled student | disability and education

As of a few weeks ago, I can officially say that I finished my A Levels but it was definitely not without struggle. Throughout my two years I’ve been dealing with my hypermobility spectrum disorder and chronic pain/fatigue, as well as several mental illness/learning difficulties, and with this came absences for countless medical appointments and I spent chunks of time away on 2 pain programmes. Nonetheless, I made it! So, here is my slightly cynical advice on how to survive your A Levels, whether you have a disability or not.

Take the right subjects for you

This one doesn’t help if you’re going into year 13, but for new year 12s, this step is the starting block that will honestly set up your two years – there’s a fine balance to strike at A Level between taking subjects you like and the ones you’ll do well in. If those go hand in hand, great! But if they don’t, you need to be very prepared to work extremely hard if you’re not as naturally inclined towards a subject. I took chemistry, which I love – even if I complained about it all the time and wouldn’t admit it to my teacher – but I had to accept early on that I wasn’t going to walk away with an A* and I probably worked twice as hard for it as my other two for a much lesser reward.

Get a good planner and always be prepared for setbacks

Regardless of if you’re a disabled student or not, A Levels will provide challenge after challenge. There’s coursework you think you’re done with that comes back, there’s random tests you get two days to revise for, essays due when you have mocks, I could go on. The best way I can tell you to manage it is to get a good planner – I recommend a Personal Planner (not spon, they’re just great as you personalise every element) but definitely get something with a good amount of space for each day. Plan what you’ll do in your frees, give yourself mini deadlines, plan your evenings, and plan when you will rest, which I will controversially say is possibly the most important.

If you then have to schedule in your medical appointments or a hospital stay, it becomes much easier to look at your week and work out when you will catch up. Personally I liked to schedule in after-school sessions with teachers because I prefer to have concepts explained to me when I first learn them, but you can also just work from your textbooks.

I honestly had 2 planners and 3 to-do lists going at any one time to manage things – you really don’t need to go that far but try and find what works for you early on!

Build rapport with your teachers

I definitely recommend that you get to know your teachers and let them know how they can help you. After the first lesson I had with every new teacher during my GCSEs and A Levels, I would stay behind and give them a quick run-down of my conditions and my needs even though they were emailed about me – it puts a face to a name . If you’re not a disabled student, still have a chat with them at some point and just show interest and let them get to know your learning style; it just doesn’t necessarily need to be so urgent.

My teachers have probably breathed sighs of relief now that I’ve finished because I spent a lot of time with most of them, after-school or by email or bothering them in their frees. I would not have wanted to be one of my teachers, put it that way, but I think they mostly got used to it after three years of me tipping up in their classrooms often in tears. I don’t think I would have gotten through my A Levels without a few of my teachers and the sixth form team, so I’d honestly recommend that even if you’re not fussed about knowing your teachers well, you still go to them if you find yourself needing some help, academically or otherwise.

Take as many opportunities as possible in Year 12

Most sixth forms (and I imagine colleges as well) offer a lot of opportunities to their students to help you with your upcoming UCAS/apprenticeship applications, and a lot of universities offer stuff too. I did 2 summer schools at Durham and Bath, as well as going to a seminar on Brexit, me and my best friend went to Manchester for another EU based event, our school took us to Bristol which included a taster lecture, I was a progress mentor and the leader of the mental health advocate team, I did a Cambridge essay competition, and there was plenty of stuff that I didn’t take part in too. Do as much as you can (without sacrificing your work or health) and I guarantee it will help you find your passion and confirm what you want to do at uni, as well as supporting your application in Year 13.

I also did an EPQ, though at my school we did it in Year 13 unlike most, which I would highly recommend if you have a topic you’d like to research more in depth that you won’t be able to in your subjects. It’s a lot of work but if you love your topic it’s so worth it. I really enjoyed researching it, writing it, being slightly (very) argumentative about my points with my supervisor and presenting it at the end. It’s funny how much confidence I gained from having to do a 10 minute presentation about the pill in front of a room 90% made up of men, but here we are.

Remember that you know yourself and your body best

This is slightly controversial, and I’m not sure schools will like this particular tip, but if you can sit there and say you know that a day off will benefit you, take one. I’m not saying take one every week because you feel like it, but if you’re at breaking point, just do it. For me, that was sometimes the difference between getting through to the end of term vs me suffering burn-out and being off for days on end later on. You might not need a day off, but maybe you might need a free period of just relaxing with your friends instead of working hard, and that’s okay too – as long as it’s rare, and because you actually need it.

Just stay out of drama

It isn’t worth it. I promise. Shove in some earphones if it’s around you, block them if it’s about you, get your work done and move on.

…But keep a social life!

I didn’t really have a social life in year 12 between my disabilities and my work, and although I couldn’t really have prevented that, I do wish it had been different. I adore my group of friends and I’ve been very lucky to have them, but I wish I’d spent more time with them. Let yourself have time off every now and then, I promise you won’t drop by 2 grades for every hour you’re out.

On a slightly different note, but it fits here – I’d really recommend picking up some volunteering. I’ve been a Cub Scout leader for 3 years now and not only have I gained skills and qualifications from it, but I’ve gained a family who I absolutely adore. I also did an hour a week in one of the GCSE Science classes through all of sixth form, which… well, it built my resilience, we’ll put it that way.

Don’t let anyone tell you how to note-take or revise

I typed all my history and philosophy notes in both years because of the pain in my hands, but to be honest I think I would have regardless because there’s so much information to get down! But in the bigger picture, I only ever took notes that I thought necessary and I put them informally if I needed to even if it caused confusion during folder checks. Whether you’re a disabled student or not, just get in the habit of working how you need to – you know yourself best. When we were really close to exams, one of my teachers kept telling me I needed to be exclusively doing essay plans, but I knew I needed to drill the content more – so that’s what I did, and it worked.

Don’t procrastinate on your coursework

NOTHING makes me wince more looking back at my A Levels more than my history coursework. I absolutely hated it, to the point that I think my chemistry teachers heard more about that than me moaning about their subject for a few months. But, I really wish I’d just got on with more of it over the year 12 summer and the first couple of months of the year. I came out with a high grade in it in the end, but it was such a slog and it took up time I needed for other things.

________

To be honest, I could probably continue for quite a while with this, but I think those are are the main things – and that’s probably enough sarcasm for one post. I hope that was vaguely useful (or entertaining), and I wish you so much luck for your A Levels!

What has being a Scout done for me? | scouting

It’s currently the summer holidays so I think it’s the perfect time to look into opportunities for September either for kids or for yourself, so I thought I’d talk a bit about my time in Scouts so far as both a youth member and an adult volunteer. Yes, I’m probably a little bit biased, but I can genuinely say that I don’t know where I’d be without it.

I joined the Cub Scouts when I was 10 and I was the only girl in my pack at the time (and was then the only girl Scout a year later) because some of my friends were in it and I fell in love with it. I was one of those kids who thrived on reward, so getting badges was my favourite thing, and I just enjoyed having friends somewhere that wasn’t school. To be honest, that’s a bit of a lie – I still thrive on reward and I still love getting badges, although as an adult you don’t get half as many!

Scouting has seen me at my worst and at my best, because it’s been one of the only constants in my life over the last 8 (nearly 9!) years. It saw me through when my best friend passed away; during all my symptoms of chronic and mental illness and this year they’ve celebrated how far I’ve come. My group have done everything they can to make as much as they can accessible, and I’ve had so many cool experiences.

The main campaign for Scouting at the moment is #skillsforlife and I’ve gained so many skills. People think of Scouting and just think of skills like map-reading, pioneering and things like that, which I have learnt (and still fail at), but it’s more than that – leadership and communication and trust. I’ve achieved my Silver Duke of Edinburgh award and I’m on my way to Gold and becoming a Queen’s Scout, which has been my goal since I was a much younger Scout.

The opportunities I’ve been offered have been incredible. I’ve been in Gang Show twice – a Scouting variety show happens all over the country – performing for a week each time in a proper theatre. Last year I went to Belgium and went to several of the war memorials for the anniversary (and a chocolate factory, so my ultimate goal now is to be a chocolatier), and next year if all goes to plan I’m going to Canada.

I actually still think about the waffles I ate in Belgium, so I just thought I’d make you hungry even though it’s not hugely relevant here.

But apart from these big experiences, there’s the weekly meetings which are just as important to me. I was a Young Leader for two and a half years, and in September I’ll have done a year of service as an adult. I’ve run several badges with the Cubs – Chef, Disability Awareness, Scientist – and I like to think I’ve made an impact on some of their lives, even if it’s just one thing they’ve picked up along the way.

Scouting is absolutely my second family, and I don’t know quite where I’d be without them. I’ve loved every camp, every experience and I honestly think that every child should have the opportunity to be part of an organisation like it – Scouting, Guiding, Cadets or anything else. It gives kids skills that they won’t learn in school, and experiences they probably won’t find anywhere else. It’s fun, it’s challenging and it’s a family. If you’re an adult, I’d 100% recommend getting involved as a leader – it’s so fulfilling and you’ll be changing the lives and mindsets of so many kids.

You can find a group in your local area if you click here. Pop your local group an email and I’m sure they’ll welcome you in with open arms! And if you’re not convinced by me alone, there’s plenty of testimonies available on the website too.

Could I do more than my best? (post results ramblings) | education

I’ve already written this post once, the day after results day. It was raw and angry and harsh, and a lot of it wasn’t me talking, it was anxiety and annoyance at an education system that I fought against for two years for what felt like nothing. It’s a complex thing, but I feel more at home with myself again now I’ve had time to process it.

Two years ago, I opened an envelope that I genuinely believed was the end of the world. It wasn’t, but I was over the moon. This year, I knew it wasn’t the end of the world – I’ve worked hard to try and overcome the concept that a few letters on a page are all that I am – but I was gutted. And it’s sad, because I’m happy with three out of my four grades, but I automatically discarded those from my mind before I’d even processed them. A few days later I’m upset that I felt no need to celebrate on Thursday, because I know there is more to it than that piece of paper.

I have spent two years fighting an education system that isn’t for disabled and chronically ill youth like me. Although my school have been as supportive as possible, my body has not really been able to cope with 7-8 hour days, or my memory with the density of the subjects I chose – I honestly wish I had done my A Levels back when AS was 50%. It sounds dramatic, but I spent full days in such intense pain that I could barely see the board, and some days my fatigue was so bad I couldn’t read a sentence out of a textbook. I missed weeks off school to be in hospital, and the equivalent of several more in appointments.

I have to remember that these exams pitted me against hundreds of thousands of students, the majority of which will not have experienced these issues. The ones who did may have done better than me regardless, but this isn’t me making excuses – it’s me forgiving myself, letting myself realise that I did the most I could, and that’s okay. Being able to write for 2 hours upwards with chronic wrist, shoulder and back pain; keeping focused and not dizzy for that amount of time – I won just by getting through all my exams, and sixth form in general.

For me, I think part of the reason I felt so upset was because I knew that there would be people I’d either let down, as well as the people who would judge me. Since my GCSE results, I’d been almost put on a pedestal by some of my peers that I didn’t want to be on; shushing me if I expressed concern or anxiety about my grades. And I felt like I let down my teachers and the sixth form support team, but they (naturally) told me I was being silly. My chemistry teacher is a very matter-of-fact person, but with the most human of emotions, and that makes for someone who can talk sense into me. I couldn’t be more appreciative.

It’s cliche, but those grades truly don’t tell my whole story, just like everyone tells you before you get your grades, but you can’t see it at the time. I’ve done three hours of volunteering a week during both years, working with teenagers at school and the Cub Scouts. I did assemblies about mental health and a talk about my disabilities to the entire staff body. I never shut up about things I was passionate about, had debates in class, educated people on feminism and ableism and sexualities. I wrote essays on topics I was fascinated by.

I did three subjects I love, and I still love them, regardless of the grades. Maybe chemistry was a wildcard, and I knew it was risky – but I couldn’t imagine doing anything else. In general, I loved my sixth form experience, and the piece of paper I received on Thursday doesn’t tell you any of those other things.

Four letters at the age of 18 aren’t the end of the world. It’s time to start new adventures, and there’s already several opportunities coming my way. I did my best, and that will always be enough. And I know, that everything will be okay.

Why I (sort of) miss my walking stick | disability

In May 2017, I started using a walking stick – on the day of my GCSE biology exam to be exact, and I was so nervous about what people would say. It’s not exactly seen as normal for a 16 year old to be using a cane, is it? But I had very little choice; I couldn’t hold myself up and the amount of pain I was in wasn’t worth it compared to the slight embarrassment I felt when I first started using it.

Using a walking stick as a teenager is really difficult, and I can’t sugarcoat that. Elderly people glare at you because they think you’re faking; people make comments as you walk past. A lad imitated my legs collapsing as he walked past me once, and I’ve never felt so self-conscious. My condition that was once invisible became public property to discuss and question and laugh at. A boy from a younger year once shouted after me asking if I’d just come back from a war, which was not only humiliating, but extremely offensive to veterans.

It got easier with time. I became more comfortable with going out; it took longer for me to feel okay when I was just with my friends instead of my mum, purely from a protection perspective (although my friends are amazing, and so supportive). I got to a point where I just rolled my eyes when someone made comments, and I empowered myself through having photos taken with it.

This was taken in Swansea by my best friend Caitlin because I walked past this wall every day walking to work experience and I happened to match it.

I stopped using it in January 2019, when I had my pain rehabilitation programme and strengthened my legs. And obviously, I was, and generally am, really happy about that – people don’t look at me, they don’t comment. But that causes other issues for me, and I sometimes miss it – not in that I want to use it, but the fact it has made my disability invisible again.

If people knock me, it hurts for at least four days, and this happens a lot because I can’t walk very fast. I don’t feel like I can ask for a seat on trains like I used to, so I’ve stood up most times than not since January on shorter journeys and the tube in London. It feels like I’m constantly dismissed and seen as able-bodied, but I’m still working on building up my strength so my legs still collapse under me and I can’t walk very far in one go.

This isn’t meant to be a sob story. This is more about the differences between being invisibly disabled and having a visible invisible disability (which is different to a visible disability, which is more about visible symptoms, I believe). I know I am privileged to be able to walk around without people making such comments, I’m more likely to be given a job, and I am less likely to find that places are inaccessible to me. There is definite privilege in the stage I am now at with my disability, and it’s quite undeniable.

But I can’t deny that I sometimes miss the ease that it could sometimes bring in people accepting that there is actually something wrong with me, even if that was often grudging. Now, I feel like I have to prove myself far more, and it’s difficult in a different way.

Whether your disabilities are visible or not, there will always be a fight. Disabled people still aren’t equal in so many areas, and often aren’t even included in lists of marginalised people. So it’s interesting for me to look at the different versions of the fight that I’ve experienced, and will continue to experience.

How does having dyspraxia affect me? | disability

“Dyspraxia, also known as developmental co-ordination disorder (DCD), is a disorder that affects your movement and co-ordination.”NHS website

Of all my conditions, I feel like dyspraxia (or DCD) is the one which is the one of the least known about – especially when people assume it’s the same as dyslexia, and they’re often grouped together.

I was officially diagnosed with dyspraxia in 2017, two years after the idea was first bought up by my Occupational Therapist at the time. The waiting time for an assessment was a long time, but we also had issues where I turned 16 and parts of the medical system change you to adult services at 16 and others at 18 – and that’s a whole other blog post. My family and I spent my childhood believing that I was just extremely clumsy and bad at sports. I couldn’t (and still somewhat struggle to) do my hair and I never managed to learn to ride a bike.

There’s been a lot of discussions on social media in recent times discussing that disabled children become disabled adults, and for me that’s really important as I turned 18 last year and I’m going to university in the autumn where I’m going to have to be completely independent. Just because I’m 18 doesn’t mean my coordination has suddenly improved and I can do all the random things that I previously couldn’t. There’s things that I come up against both daily and randomly like not being able to use knives properly or grating cheese, and if strangers ask me for directions they’re probably not going to get there.

I directed an elderly couple to somewhere very local a couple of months ago and 2 days later realised I missed out the most important road on the route. Fun. Also, feel free to follow me on Twitter!

I literally bump into anything and everything – in the corridors at school I used to bump into at least one person every time I moved classroom. But there’s things that are less obvious that I struggle with too, like being over-sensitive to light and moving my eyes and attention from one thing to another like the whiteboard at school to my laptop or a textbook. My short-term memory is also non-existent and I interrupt people a lot which I always feel awful for, but I’m not being rude – I just struggle with the perception of when to speak and following all the people in a conversation’s voices.

It is difficult to deal with a lot of the issues my dyspraxia brings because it makes me feel so behind other people my age and I often feel guilty about some of the issues it can cause for me. It’s definitely not talked about enough in older teens/young adults and is perceived as something only really seen in kids – when you’re someone older with it you’re just a nuisance, or unfortunately far too often assumed to be drunk. I’ve just invested in these badges in an attempt to combat that part.

If you’d like to learn more about dyspraxia, you can on the Dyspraxia Foundation or Dyspraxia UK websites. I hope this has given you a bit of an insight into the condition if it wasn’t really on your radar, or if you didn’t realise it was different to dyslexia!