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.

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.