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 Back in May, I wrote an unpublished blog post, with this excerpt: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

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.