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 Back in May, I wrote an unpublished blog post, with this excerpt: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

No, 14 was not “too young to know” | asexuality

Whenever I talk about coming out at 14, there’s always a common theme in responses, and I’ve seen others have this too – surely 14 is too young to know you’re asexual?

When people say this, what they’re referring to is the idea that you shouldn’t “be sexual” at 14, you shouldn’t be having those sorts of ideas or relationships at that age. This stems from multiple misunderstandings.

The first of these misunderstandings is something that comes through a lot in our society when we talk about changing how we teach sex ed, and I believe it stems from the general taboo of sex in our society – the idea that young people aren’t already learning about sex at that age or that they aren’t already on their way to forming such relationships. We know that this simply isn’t true.

Our school halls are filled with innuendos, elbow nudges and rating others out of ten. Our society is fundamentally built on relationships, on finding our “other half” (newsflash, you are already whole), on one-night stands and pulling in clubs. We call babies ‘ladies’ men’ or say they’ll ‘get all the boys’. Sex and attraction, at the very least aesthetic, is normalised from day one – and not only that, but we grow up without high quality sex education to actually comprehend it.

I never had crushes as a kid. I didn’t pine after the boy in the playground that everyone else did, the classic football lad with blue eyes. I didn’t understand why so many of the girls spent time looking at pictures of Zac Efron and taking quizzes about which random celebrity boy they’d end up with. Eventually I forced myself to believe I was gay, and then when I realised I didn’t like girls either, I thought I was broken. There is more to sexual attraction than simple lust – although that plays a part too.

And another misunderstanding here is that you have to have sex, or even have had a romantic relationship, before you can decide you’re asexual. This is fundamentally untrue – firstly, this feeds the idea that all asexuals don’t have sex, and more than that, we don’t ever expect straight people to have had sex to “confirm” their sexuality, to identify as straight before they hit the age of consent.

And so, I think I was perfectly within my rights to know at 14. I had people say it wouldn’t stick – whether that be due to my age, or just because of the age-old “you haven’t met the right person yet” that comes with saying you’re asexual at almost any age – but it has.

But I think something I want to stress is that it wouldn’t have mattered if I had ended up being wrong. There is nothing wrong with using a label that you believe fits you, and then finding that it doesn’t.

Saying all of this, though, it’s important that I recognise my simple privilege in realising who I was so young, even if I get a lot of judgement around it. I talked in my recent “reintroduction to my coming out story” about discovering the term on Tumblr – and I know many examples of people who also experienced this, and I don’t doubt that this continues – and although it may be shifting to Twitter and Instagram now too in this age of infographics and carrds, it shouldn’t be the job of social media to educate.

Young people should be aware of the wide spectrum of sexuality younger. That’s not pushing an ideology on them, it’s simply informing them. When we teach sex ed, we can’t talk about LGBTQIA+ identities as if no-one in that class could be part of the community any longer, we can’t imply that it’s something out of reach.

And although it’s still not pushed enough, we do teach young people it’s okay for them not to have sex until they’re ready – but we don’t teach that it’s something they may never want.

A re-introduction to my asexuality story | asexuality

Today I attended the 2020 UK Asexuality Conference, and I felt a sense of belonging that I’ve never really felt, or not for a while.

About a year ago, I stopped talking about being asexual as much as I used to on the internet. I didn’t necessarily stop completely, and it’s still in my bios – but I just saw so much aphobia and exclusion and gatekeeping on Twitter that I started to feel like I had to protect myself.

I’m a complete stereotype, being perfectly honest – I had no idea what asexuality was until I found out about the ace spectrum on Tumblr. I read the definition and something just clicked. I don’t think there’s anything wrong with that though, because otherwise I would have felt broken for so much longer. Talk about sexuality wasn’t seen on many other platforms back then. It took me a little while to decide to take on the label, but I came out at 14 to my mum.

I had a conversation with my mum in the car one day where I mentioned a friend who had come out as asexual (which was true, it wasn’t even a cover up) to test the waters, and she didn’t understand it. We had a lot of chats about the misconceptions of hormone imbalances and such. She is the most liberal parent you could come across, but it took me a while to feel like she would accept it.

The first person I came out to was a therapist. It wasn’t someone I ended up seeing regularly – it was to fill the gap before I got into CAMHS – but he was teasing me about one of my friends. By that point, my need to tell someone, anyone, was so big, that I just blurted it out. I felt like a bubble had been burst.

Eventually, after many failed attempts of going and sitting in my mum’s bedroom and willing the words to come out, we were in the car again – most of my mum and I’s landmark conversations and deep debates happen on long car journeys – and she simply asked me how I identify.

I identified as demisexual back then. I came out publicly on Instagram on Coming Out Day 2015, and most people didn’t care, but I got some backlash that I was just straight. I can’t remember when I moved to asexual, but it’s comfortable and natural these days.

By age 16, I was entirely casual about my sexuality – I don’t feel like I have to tell anyone and I wouldn’t say I bring it up without context, but most people know and quite a few of my teachers back at school would discuss it with me if it came up.

The intersection between asexuality and disability fascinates me. When I started identifying as asexual, I was in the starting blocks of finding out that I was autistic and chronically ill. Those worlds often collide when I’m accessing healthcare, and doubt can often be cast over my sexuality.

A couple of my most prominent memories from the time I spent in an adolescent mental health unit are related to my asexuality, and I often wonder if that’s because it was the same year that I was having to come out repeatedly anyway. When I was admitted, it was the first time during a physical check-up that I was asked about being sexually active, and I can clear as day remember my laugh and saying I was asexual sliding so easily off my tongue; I remember the eyebrow raise of the nurse and the slightly awkward squirm of the doctor. It’s worth saying that asexual people can be sexually active – but for me back then, it was a much easier thing to say.

The others are conversations in the communal area of the unit, various patients squashed up on the three worn sofas, some knitting or colouring in. One day, one of the boys on the unit told me that the doctors had told him his sexuality was only because he was autistic, and after I exclaimed that I’d heard the same, he asked if I was pansexual. I remember laughing and saying no, I was “the exact opposite” (it’s not that simple, I know, but I was 15 and new to that world). It fascinates me that you can fall on different sides of a sexuality spectrum and still have your identity put down to your neurodivergence.

I don’t need to be fixed. You cannot fix what isn’t broken.

I’ve never truly wanted to be allosexual (non-asexual). I’ve had moments of my heart slightly pulling, that slight moment of desperation to be “normal” simply for your life to be easier, or to be loved. But it wears off quickly, when you remember that there genuinely isn’t something wrong with you.

I want to start writing about asexuality again; I want to talk about how it intersects with my other identities more. I want people to understand it, understand me. I want to advocate for better understanding of it in the healthcare system.

And so, that is a re-introduction to the part of me that I’ve forced myself to neglect for the last little while. My identity is too important to me to fear the backlash anymore. I’m ready to talk about it – or, at least, I will be.

I’m not shielding, but I won’t be going back to ‘normal’ yet | disability and COVID-19

On the day lockdown began, the country started waiting for it to be over – counting down but with no date to look forward to. Although this is going to be a much more gradual process than many may have anticipated, July 4th will represent a major shift and arguably the situation will no longer be able to be classed as a “lockdown”. British people will flood into pubs, restaurants and hairdressers, amongst other places.

That’s what the government have set out, and as long as they have listened to the scientists, that’s fine with me – I’m trying to not be completely cynical about the moves because it isn’t my place. But as a disabled person who isn’t technically on the clinically vulnerable list, this causes a more complex issue than you might think.

My conditions mean that my immune system is quite weak – when I had the inaugural freshers flu back in October, I was extremely ill in comparison to my peers and it took me several weeks to shake off. I don’t doubt that if I got COVID-19, it would be the same situation, or likely worse. It’s been a scary prospect since the pandemic began, because as the numbers rise, there’s a constant subconscious recognition that it could be you next.

I have to stress that because I don’t have to officially shield, I am in a privileged position over many other disabled people as I have been allowed to make my own decisions, but I think it’s interesting to look at the processes and issues behind such decision making.

I was probably less scared at the start of lockdown that I am now, which I’m sure sounds completely irrational. I would go on my short daily walks and go into a few of the local shops. Now, a couple of months on, I feel unable to even do that. But this comes down to my fear and lack of trust in the general public, and as rules relax, I am seeing the lack of care that people truly have. Seeing photos of people crushed together, whether that be on the beaches or in town, without proper distancing, is terrifying.

Of course, I could just wear a mask and do my best to distance. But being autistic, I find things covering my face extremely difficult. The government have said that having sensory issues exempts us from the law on this, but at that point you are asking me to make a decision between my conditions, between my health and my ability to cope as I navigate the world. I have to decide whether I try to cope with a mask that makes me feel like I can’t breathe, like I am overheating, distracting me from anything else, or whether I risk getting the virus instead.

For me, at the present moment, that decision does not seem worth it. I have no definitive need to go to these places that are opening at the moment, and I can’t say many of these places are ones I’ve missed in such amounts that I feel the need to rush to them. On reflection, I think part of that comes with the periods of isolation I’ve had throughout my teenage years – I already know what it’s like to not be able to go anywhere, so it hasn’t been as much of a challenge.

Watching many people go back to normal living outside of the new guidance, not just going to these newly opened places but having parties in their back gardens with more than the allowed amount of people, could not be more frustrating. Those shielding or taking distancing extremely seriously due to their health just can’t do this and it feels like it has become a pointless exercise. But if we were to get the virus and pass away, we would just be another person “with existing conditions”, absolving everyone of guilt. I recently spoke a bit more about this ableist language in an article in Foreign Policy magazine.

It’s down to the individual as to whether they stick to guidance or not. But part of the issue is not truly about the guidance – it tells you to go shopping, to go out and spend your money and go back to normal. The issue comes when thousands of people are doing this at once. We can’t prevent that, we can’t change that and it’s very much becoming an every man for themselves situation. But disabled people with no carers will have no choice but to navigate the outside world eventually, and it’s not a simple issue to make such a choice. Little provision has been made for this issue, and it’s unlikely that it will be looked at.

This isn’t me saying that people shouldn’t go out, or that they shouldn’t enjoy being able to go back to some sense of normality. But, it has to be recognised that for so many people, there is anxiety about going back to normal, and for those who are shielding properly this is even more important to recognise than it is for those having an experience like mine. Disabled people and those who have been constantly labelled as “clinically vulnerable” throughout the last few months need to have their experiences known and validated during the pandemic, and after it.

Why my ‘labels’ matter to me & HSD Awareness Month | chronic illness

During HSD/EDS Awareness Month this year, I’ve been reflecting a lot on my story and my diagnosis. It’s been a decade this year since we realised that something was wrong, but it’s only been three since I was diagnosed with Hypermobility Spectrum Disorder.

I spent seven years being sent from department to department, every doctor or therapist telling me they couldn’t do anything, or couldn’t do anymore. Several neurologists, orthopaedic surgeons, a rheumatologist who said EDS didn’t exist and young people didn’t get fibromyalgia. Physiotherapists and occupational therapists, some good, some who only saw me once because they didn’t understand me. A set of nerve tests, plenty of ECGs, lots of blood tests. I started using a mobility aid because my legs couldn’t hold me up.

Eventually I was lucky enough to see a rheumatologist who said it was almost certainly HSD or EDS, and sent me to one of the only specialists in the country for it – 2 hours away in London. I was diagnosed when I saw her, given the first painkiller that ever helped me, and referred to the pain services in Bath (also 2 hours away) who really helped me get to a point where I could cope much better in everyday life.

A lot of people think that labels are a bad thing, but each time I’ve gained one I’ve felt a bigger weight off my shoulders. There is nothing quite like spending years being shunted between doctors who don’t know what’s wrong with you and eventually getting an answer.

I suffer daily from chronic pain, chronic fatigue, easy bruising and injury, gastro issues and more, and often deal with subluxations that I wear braces to prevent. I also have Postural Orthostatic Tachycardia Syndrome, which is a common comorbidity that causes autonomic dysfunction, so I am constantly dizzy and my blood pressure drops when I go from sitting to standing (this was diagnosed much later). My joints are so lax that only my muscles properly hold me up – my lack of activity in my teenage years due to chronic pain meant that before my pain rehabilitation, my legs collapsed constantly under me leading to me needing a mobility aid and now this still happens when I’m having bad patches.

Because of how significantly this all affects my life, my label matters to me. It took seven years of uncertainty and hospital visits and pain and anger to gain it, and it meant to so much to me to be believed and for someone to say that I was valid, and not only that but was able to give me some support. One thing that I find really interesting looking back is that at the time I believed that I didn’t deserve as much help because I was diagnosed with HSD rather than Hypermobile Ehlers-Danlos Syndrome (hEDS), as I was one point off diagnosis for the latter. I’ve since learnt a lot about the conditions and the fact that there is no inherent difference in their severity, but at the time I had some resistance towards this.

I still grieve for the years I’ve lost to my chronic illnesses, and especially those when I was so lost and sad and confused. But I am so grateful for the care that I’ve had in the last few years, and for the doctors and physios and occupational therapists that I’ve worked with. I’m grateful for my other diagnoses, those I gained both before and after this one, and I am constantly aware of how lucky and privileged I am to have seen a doctor that believed me because so many chronically ill people don’t get that. Yes, it took seven years for me to be diagnosed, and it’s almost certain that part of why I deteriorated so badly was because of this, but I am lucky. That shouldn’t be the case, but it is.

And that’s why my ‘label’ means so much to me. It’s not my entire being or personality, but it’s a huge part of my life, and I think it’s okay that it’s important to me.

HSD/EDS Awareness Month is about to end, but my condition affects me for the other 11 months of the year too, and so many others. For some, it is a huge part of them and for others, it isn’t – and both ways are valid.

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.

The impact of a late autism diagnosis, and some reflections | disability

I was diagnosed with autism when I was 15, after a few months of the question mark being over my head.

The first time it was bought up was by an orthopaedic surgeon who asked if I had Aspergers as I walk on my toes and was about to start seeing CAMHS; before him, it had never been questioned or considered. My mum and I were stunned, and were upset for weeks. Looking back, I know that we shouldn’t have been – but it was just so shocking at the time. By the time we met my psychologist not long after and he brought it up, we were no longer surprised. But that didn’t mean we’d quite accepted it yet, it didn’t mean the process was without difficulty.

The issue of girls going undiagnosed is well documented. Many are diagnosed much later than me, too, but many boys are diagnosed a decade before I was. There are some that would argue that it’s a simple cause and effect that less girls are autistic, but with the amount of girls diagnosed so late on in life, it is becoming more commonly recognised that this is likely untrue. Regardless of the sex ratio of how many people have it, it can be seen that boys are almost always diagnosed earlier than girls. The impact that can have on individuals, on families, is huge.

I had my ADOS (Autism Diagnostic Observation Schedule) during my time in inpatient CAMHS care. I spent over six hours on my own in my room that day, the anxiety and overwhelm and shame refusing to subside. I’m not sure I will ever forget that day, and how much my heart ached. Due to my anxiety causing me to refuse to partake in most of the assessment, I had to later have a 3DI (Developmental, Dimensional and Diagnostic Interview) in order to confirm my diagnosis.

It is difficult to describe the shame I felt for being autistic for the first year or two. I didn’t understand how I should feel. When I learnt I might be autistic, a lot of things suddenly fell into place. I understood why I am the way I am, why I feel certain ways, why I can’t cope with certain things. But internalised ableism is very, very real. “Autistic” was used as an insult and a joke amongst my year group at school. I didn’t tell anyone but my very closest friends, even once I reached sixth form and my year group was a fraction of the size and I had accepted it myself. I could never have imagined at the time putting anything about my ASD on social media, even though I was already a disability activist for my other conditions, in case it were to be found.

My mum also found it quite difficult to accept – it wasn’t that she was ashamed of me, or that she didn’t support me at all, it was just such a strange concept that after 15 years of knowing me, there was suddenly a label attached to me, a label that meant I was different but in quite a specific way. We had a lot of conversations in that first year, some teary, some productive and analytical. I am so appreciative for the place we have reached now, and for every bit of support she has given me.

I was extremely lucky that my school were very supportive from the moment the diagnosis was in question, and I’m very aware that most young autistic women do not get this experience. My teachers, particularly at A Level, were incredible and constantly made sure they were doing things correctly. Even though I was hiding my autism from my peers, in Year 12 I gave a presentation during a CPD training session to the entire staff body (I hope I get to do more of these in the future), all the while attempting to make sure no-one found out. Sometimes I wonder if anyone knew and helped me keep it quiet.

I spend a lot of time wondering what it would have been like to have been unashamedly myself for those four years at school. I let my proper personality shine through much more during sixth form, but I still couldn’t just be – I spent so much time hoping I wasn’t being too much, taking up too much space, being too ‘weird’.

When I started at university this year, I promised myself I wouldn’t let myself hide it. Don’t get me wrong, I was still a bit guarded, but I never tried to hide it and most people knew pretty quickly. I’m enjoying being myself without apologies, and finally getting to do all the autism advocacy that I always wanted to do.

I love being autistic. Maybe not always, maybe not every day. It causes meltdowns and sensory overload and anxiety. It causes fights with my family when I can’t explain myself. It causes me to spend hours and hours worrying about social norms, whether I’ve done something wrong or embarrassed myself.

But it gives me my passion for social justice and equality and for a better world. It means I spend hours researching a topic I saw in a tweet, or something my old chemistry teacher would mention offhand. It gives me my creativity and my innovation, the perspectives that not everyone has. It gives me my sense of empathy, the one that many people don’t believe we have.

I wish I had been diagnosed earlier. I wish I hadn’t have had to go through the panic attacks and anxiety that meant it finally got picked up. I wish that I never felt ashamed. But I can’t change that part. What I can do instead, is now shout about it. Show the positives and the negatives and the things that need to change. And, overall, I’m grateful I managed to get my diagnosis at all, because so many still can’t or don’t.

Don’t leave autistic people behind in the COVID-19 conversations | disability

Today is World Autism Awareness Day, or Autism Acceptance Day as many of us would prefer it to be – most people are aware in some capacity that autism exists. But actually, in the current global situation, awareness is needed in a slightly different sense to the everyday, with discussions about coronavirus dominating and the care and support of autistic people being almost ignored, as well as how the virus is affecting us.

One of the more commonly recognised traits of many autistic people is the need for a routine, for life to be in a set way, for there to be no unexpected changes. This is something that very clearly has been torn apart by COVID-19; schools and universities have been called off likely until September, thousands of people are being laid off or furloughed, we’re stuck at home and unable to do the everyday things we normally would. Of course, that’s the same for everyone, but the impact that can have on autistic people’s mental health is so significant – it can cause meltdowns and anxiety, and the uncertainty of when it might go back to normal doesn’t help.

Something that I’ve seen discussed by a few friends that is affecting both me and my brother is the issue of panic buying, because we can’t access our safe foods. Many autistic people have a limited diet in general, or have foods that are the only ones they can eat when stressed or dealing with sensory overload. But with people buying so much that they don’t need, we can’t access them. In my house, between the two of us these include cheese toasties and tomato pasta – all the ingredients for these, of course, being some of the main things that aren’t now readily available. This issue may also be separate to panic buying, it may be that only specific brands are okay and we can’t currently get to the range of shops we might otherwise.

Government communications needs to be clearer. Vague communication and the use of soft language like “should” and “could” can be confusing for autistic people, particularly young people. Knowing clear cut rules about what can and can’t be done during this period is necessary to make sure autistic people feel safe and understand the consequences and ramifications of not only their actions but others.

As someone who has spent long periods of their life isolated due to chronic illness, as well as spent time in a mental health unit, I feel that I’m more used to this sort of situation – but that doesn’t make it easy. Autistic people are more likely to be isolated as it is, and are less likely to be able to connect to the rest of the world during this period.

The Emergency Coronavirus Bill truly threatens autistic people in multiple senses, one of them being that local authorities can be relieved of their duties and only meet the most “urgent” care needs, and this will leave so many autistic people and their families crucial care that supports them to survive. Autism does not go away during a global crisis, and although it must be recognised that the situation means that some care may be less frequent or intense, it is not okay that autistic people’s care can be completely withdrawn or their services closed.

Similarly, the Emergency Bill means that only one doctor is needed in order to section someone under the Mental Health Act. This is a significant issue in that vulnerable people are more likely to be detained unnecessarily. This applies to anyone suffering with mental illness, but it has been found to have a profound effect on autistic people with data currently showing major delays in autistic people being discharged from units, increased used of restrictive interventions (3535 in a month) and over 2000 people with a learning disability/autism in inpatient units (Source).

This bill threatens autistic people in multiple ways, and it can’t be seen as acceptable. Social care needs emergency funding now, and the alteration to the MHA is dangerous. Please don’t leave autistic people behind during your conversations about coronavirus in not only healthcare and social care, but also how you talk about the virus and the lockdown. Think about how much you’re buying, support families who you know are supporting autistic people. This World Autism Awareness (and Acceptance) Day, don’t just retweet facts about us – use it to show that you understand and support us, especially through this virus.

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.

Why Sex Education Season 2 is so important to me

After the hilarious but poignant and relevant first season of Sex Education last year, it’s no surprise that a second season was made, and after finishing it in less than 24 hours I had never felt quite so represented.

The vivid colours and Welsh landscape shots make Sex Education seem almost innocuous to start with, but this show is home to diversity and comical reality, the type that makes shame melt away with the realisation that you’re not alone. I loved the first season, and I was so excited about some new episodes. I love the characters, I love the storylines, I love the slightly weird combo of American and English school culture.

But being asexual, I always thought that I would be alone in not having representation on the show. It didn’t upset me as such – I’ve been misrepresented and/or missing from the media for as long as I remember. I didn’t even know the term existed until I was 14, when I was beginning to feel like a misfit (which I am, in several ways, but that’s not the point). I never would have had the realisation if it wasn’t for Tumblr, which seemed to be the age-old site for discovering who you were back when I was an early teenager.

But it shouldn’t have to be. Asexuality is represented more through more mainstream social media like Twitter and Instagram now, including through hashtags such as #ThisIsWhatAsexualityLooksLike, but traditional media still severely misses the mark.

So when Florence turned up in the fourth episode, I felt a sense of hope and fear all in the same moment, because what little asexual representation I’ve seen over the years has been completely inaccurate. I assumed Otis and his mum would shrug her off and just tell her she wasn’t ready, that she hasn’t met the right person yet, that she was just a late developer. Most of us have heard it all. When she spoke to Otis, I rolled my eyes a bit – I was right.

But what was more important was when she spoke to Jean. When Florence softly said she felt broken, I was immediately transported back to 2014. This was a phrase that I said over and over again until I scrolled upon that random blog post. Even more importantly, Jean explained it without probing her like a science experiment or acting like Florence was some sort of strange phenomenon. The mention that some of us still want romantic relationships nearly had me in tears. Then, I could look at Otis’ reaction and see it was on purpose to display what we typically get told.

I can’t think of many shows more current to young people that so many are actually watching than Sex Education, and if one single teenager (or adult, because the lack of representation means many don’t know of it till they are much older) discovers that they aren’t broken, that they don’t have to force themselves to feel what they don’t, then that will be enough for me. And aside from that – the education it may provide to everyone else, the potential for tolerance and knowledge, is huge. I am so grateful.

In the final episode of the season, Florence says that learning to accept herself has changed her life. I can attest how true that statement is, and I only wish that I had this show when I was still struggling to understand myself, because the realisation wasn’t the end of my journey.

This season also had some great representation of trauma and anxiety that I really appreciated, as well as a disabled character (played by a disabled actor!). There aren’t many marks that Sex Education misses, and I’m already impatiently waiting for another season.