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 Back in May, I wrote an unpublished blog post, with this excerpt: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.

Awareness is not enough, and here’s why | mental health

Mental health is one of the social issues most important to me, but I struggle with the awareness week and days. At an individual level, people do as much as they are able – there is talk of parity of esteem and telling people to reach out, and sharing of helpline numbers. Those are all important things, don’t get me wrong, and I’m sure those things are enough to save some people’s lives. There is absolutely nothing wrong with those actions. But what is wrong, is the complete lack of care by the state for the mental health crisis; overstretched services seeing no extra funding, and those with mental health issues being left to their own devices.

The government recognises Mental Health Awareness Week each year, tweeting about it and lighting buildings up green. They mention it vaguely in speeches and in the budget. In 2019, it was found that compared to 2017/18, the amount of planned spending on mental health services had gone down by £34 million. But the mental health crisis is worse than ever, and after this period of isolation it is almost certain to get worse.

Those suffering with mental health issues spend months waiting to be seen, and are often discharged on first meeting. They are told they do not need therapy or medication, they are given worksheets and recommendations for apps. They are sent home from A&E because no-one knows what to do with them. They are sent to inpatient units hundreds and hundreds of miles away, and most experience trauma whilst there. The transition to adult services at 18 is difficult. None of this is acceptable.

Today CAMHS is trending, halfway through Mental Health Awareness Week. There is tweet after tweet of negative experiences, for example here and often with added memes, like this one (TW). It is no surprise to me at all that young people up and down the country have had bad experiences with mental health services. Last year, the Children’s Society estimated that over 100,000 young people aged 10-17 were turned away for not being a “serious enough” case – 60% of those referred. Those who do get support find it is not soon enough, or is not good enough.

In the most part, I do not blame the staff, and I have to emphasise that. They are pushed to their limits and doing their best in an underfunded system. And 6 weeks of Cognitive Behavioural Therapy (CBT) is rarely enough for anyone dealing with mental illness; both in terms of it not being enough time and the fact CBT isn’t a one size fits all therapy like it is made out to be. Dialectal Behavioural Therapy or art or drama therapies are often better placed to support patients, but they are rarely offered.

I was very lucky to have a great psychologist, but I’ve had a lot of issues with other parts of the service, particularly when I turned 18. The main mental health service here is now Forward Thinking Birmingham, which runs from 0-25 so I didn’t have to transition to a different place, but I had to move to a different psychiatrist. When I had issues with this doctor, they couldn’t get me a new one because the service didn’t have another 18-25 one available, and I was told to wait until I got to university and to try then. I was left without psychiatric support for 10 months, aside from one emergency appointment with my old one before my A Level exams. I was and still am on a medication that should be closely monitored, as well as at the time my insomnia being severe because the melatonin I took for years was taken away the minute I turned 18.

I say I was “lucky” to have the psychologist I did, and the emphasis has to be on that word. I had friends who had psychologists who worked for the service in the exact same building who did not support them at all and discharged them quickly with nowhere to go. Luck should never come into it, and support should never be a case of probability.

The statistics show how significant the issues within CAMHS and the wider mental health service are. YoungMinds found that in 2017-18, there were over 27,000 A&E attendances by under 18s with a psychiatric diagnosis – almost double from the 13,800 in 2012-13. This is because there is nowhere near enough crisis support available, nor is there proper long-term care. In 2015, an extra £1.4bn was pledged for CAMHS, but it still account for only 0.7% of NHS spending. A report in 2018 said that NHS England admitted that only a quarter of those under 18 with a diagnosable problem received treatment after triage.

Yes, we’re in the middle of a pandemic, but we’re refusing to talk about an epidemic across our country. Thousands of people in this country suffer with mental illness and are not receiving treatment, and this is rarely because they aren’t trying to access it. Most of us are are talking, we are speaking up – we know it’s “okay not to be okay” and we want to get help. The problem comes because the infrastructure is not available to support us.

Three quarters of young people who seek support become more unwell during the wait for treatment, and further thousands aren’t given the support they need once they get there. The standards of mental health support across the country vary massively. We cannot allow this to continue.

COVID-19 will only make this worse. After weeks and weeks of isolation and loneliness, it is only inevitable that many more people may experience agoraphobia, or develop mental health issues due to bereavement, or have dealt with significant anxiety or depression due to the situation. Autistic young people will struggle to go back to their normal routines and may struggle with their mental health because of this. This pandemic will only feed the silent mental health epidemic.

The lack of care given by the government for mental health funding is, ultimately, disgusting, and I am tired of mental health being a buzzword. I don’t want awareness, I want action. I want proper support, better training, and true parity of esteem. Mental health issues aren’t actually the same as a broken leg, because that is an acute issue – we need long-term support and inpatient beds that aren’t halfway across the country, and services that aren’t so overstretched that they have to turn people away just because someone else is slightly more severe.

I am not ashamed of my mental health issues, and I know that I deserve help. Awareness is not always the problem, and there are major stumbling blocks before we get to the next stage.

Dear Universities | COVID-19 & education

I have sat in my desk chair for the past three days, for hours on end. I am sat in front of a journal article about the American promotion of democracy in the twentieth century, if you’re at all interested, though I’m sure you aren’t. In the space of around 10 hours, I have made my way through a page, one of 18 for this article alone. I’ve cried, I’ve snapped at my family, and primarily, been numb. I am angry at my inability to work. It is not without trying.

I am lucky to even have a desk to be sat at. Thousands of us have extenuating circumstances that are there without the presence of a worldwide crisis. We might have disabilities, mental illnesses, caring responsibilities, difficult family situations. We might have unstable wifi connections, or don’t have a laptop. We need extensions on coursework, counselling sessions, support with essays, accessible exam arrangements. Students have had their income taken away and it won’t be provided by the government due to 0 hour contracts. None of these situations have gone away with the arrival of COVID-19, and if anything they have just been elevated by us being thrust back into our family homes (or being alone in halls). We cannot be expected to work at our normal capacity during this time, and it is upsetting that we will be judged on work at this time.

Personally, I deal with autism and anxiety along with physical illnesses and dyspraxia. The lack of coordinated and efficient communication from my departments and the university as a whole has meant I have been left confused, uncertain and falling into a relapse; there has been no help for disabled and autistic students to support them in such an anxiety-provoking time. My routine, uni life and plan for the next 4 months has been swiped out from under me, and my anxiety is thriving. My fatigue has taken over, after hours of sitting up and attempting to force myself through work; my chronic pain has also gone nowhere.

I’ve also been chucked back into my family home, one that is full to the brim with 7 people including 3 younger siblings with their own combinations of conditions, and our nan, who is also extremely anxious given the situation and the fact she is only recently out of hospital herself. It’s loud, busy and messy; everyone is worried and stressed. Our wifi is struggling to cope with several of us working from home – I’ve been having to switch to 4G to use Zoom and Skype, and I only have a limited amount of that. Surely I, and thousands of other students, can’t be expected to work as normal in this capacity?

I have limited resources for my coursework – yes, there is a lot online, but history is much richer in print – and my group project is going absolutely nowhere. How are we meant to organise a group project when everyone is just attempting to survive and support themselves and their families, with their never-ending combinations of individual circumstances?

There is no comfortable format that exams can take. Take-home 24 hour exams may be significantly difficult to be taken in homes full of other people, an atmosphere full of anxiety and noise. I can’t access my exam arrangements at home; they are the only way I can properly, fairly and effectively take my exams. Adding more coursework isn’t fair to those who are better at exams, and coursework is hard enough as it is right now. This is a difficult and unprecedented situation, and I do not blame you for trying to work everything out – but I implore you to consider how difficult this is for us as students, and consult us. Please tell your students each step of the process, because it can make such a difference to those of us with autism and similar conditions.

I know you’re trying, and you might not be actively working against us. But I am tired, and I cannot carry on this way. My first year has been extremely difficult and I’ve dealt with a lot, and I have worked through it. But this is something unfathomable, something no-one can quite believe is happening. Our well-being as students needs to be taken more seriously; we cannot be expected to work as if everything is normal.

I feel lucky that I’m a first year, and I’m remembering to check the privileges I do have in this time. But it isn’t even really about the grades, for me – it is the pressure and stress about getting the work done at all, let alone getting the marks that I’ve been getting throughout the year. It is hurting me, exacerbating my symptoms and it’s beginning to affect my family.

Please consider whether uni work should be continuing at this time, and whether exams need to happen – and where they do, the form they will take and when they will take place. Consider the individual circumstances of your students and do not see us as one single body. I beg you to consult us and understand the difficulties that some of us are dealing with during this period, and that are present away from it too.

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.

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!