We Make Enough Adjustments, Now It’s Your Turn

This post has a high possibility of turning into a bit of a rant, but I am also going to try and keep it from going that way and explain or persuade more than shout at people. I know that the people who need this message are very unlikely to ever see it , and that the people who are reading it are likely to nod sympathetically to what I am saying to you all. However a part of writing this will be about sharing emotions, sharing thoughts and fears and frustrations with you all, maybe they will help you find relatability; we are not alone.

This title might seem a bit of an odd one but it is something I think more and more about as we head past the six months mark of Covid-19 dominating our lives. When you think of all the things that autistic people have to learn to do, all of the things we have to tolerate and psych ourselves up for. These things are daily, but more than that these things will never go away, we will always be autistic and I am so glad I live in a world where I now embrace my autism as a huge part of my identity. I generally feel, and hope, that most of us wouldn’t want to remove these struggles that we face if it also meant removing all other things that autism makes us. We do all of this to thrive, to be accepted, to be loved and happy and independent and so many other things.

Yet there are many people out there in the world right now who refuse to wear a mask for a short time because they don’t think people should make them. There are people out there (I have heard this on our own morning news!) who are aware that they have higher Covid numbers than an adjoining country, who see that their risk is likely to rise, and who still think it is perfectly ok for them to visit a less populated country for a holiday away from the risks.

I am not for a moment shunning those who cannot wear a mask, I know there are a lot of people who can’t wear them for legitimate mental and physical health reasons. I know that autism in itself is considered a reasonable exemption, and having had to wear masks only a few times I have been consistently aware of this new object on my face which moves around, makes me hot, itches and such. I am wearing a mask because I can cope with this for the amount of time I need to wear one, and because I have two autoimmune diseases and weak muscle tone which could possibly mean this disease would be very bad for me.

I try to maintain social distances despite the people around me who are not, and despite dyspraxia and dyscalculia both meaning that I struggle to keep a visual guide of the two meter distance in my head. I am trying to remember the rules of situations, trying to keep up with cleaning my hands despite the strong smell of the alcohol gels and the fact that these gels often lead to my blood sugar checks being inaccurate.

I have noticed a huge rise in my anxiety levels whenever I go anywhere, not only because of the virus risks but also because I have barely had any social contact for months. If anything, it has made me and my partner more aware of the body language reading skills we have obtained and don’t naturally have. In many ways body language and speech nuanncess for us are like learning a second language. If you took a language at high school and haven’t used it since then the chances are that you don’t remember it well but that you would re-learn it quicker the second time. This is  where we are sitting, in a world where we are losing skills, we are losing confidence, and for me it is all happening as I am heading into the final year of my University degree and will need to start thinking about where I go from here.

This anxiety that I am experiencing now, is the same anxiety that I have seen and heard people claim a reason not to wear a mask in public. I totally respect and agree that there are some who are in this position, and for this reason, I won’t glare at someone for their lack of mask even though I know there are some people out there who have never experienced anxiety at a high level but who claim to due to some discomfort.

I guess what I am trying to say to everyone in this post is that I acknowledge all of those out there who can’t wear a mask for legitimate reasons. I understand that wearing masks is difficult and I myself do find it hard to wear them, even harder to wear them and also be expected to communicate with others despite a new and very significant sensory invasion. I do not understand, and have genuine anger towards, people out there who are ignoring the rules, who are deliberately trying to side step them because they see a small inconvenience in their lives as something to be avoided.

I want to tell those people that many of us who are neurodiverse, who have invisible and visible disabilities, we have never experiences a small inconvenience. For us, some of the same inconveniences can be debilitating, they can destroy an entire day, they can prevent sleep, cause panic attacks or mean we miss out on things we enjoy. Those things happen a lot, they happen regardless of what other people around us are doing but at the moment, during a pandemic, well these things can happen because of that guy who couldn’t be bothered wearing a mask because it’s hard to talk to people, they happen because of those who don’t try and maintain a distance from others despite rules having been put in place to avoid it.

Nearly fourteen years ago my family and I returned from a holiday abroad which had gone well and we were heading back to school and work when my Mum suddenly started to become ill. She was sent home from her work at lunch time with flu symptoms, by the time my Dad had finished work and brought me home my mum was in a lot of pain – pain everywhere which she couldn’t pinpoint, she had a high fever and was incredibly dizzy. A few hours later my Mum was in the Intensive Care Unit, it was two months before she was able to come home, a year before she could return to work. She is in the very low 10% of people to survive Tick Bourne Encephalitis with minor deficits. The stats for surviving with major deficits is 30%. Sixty percent of people who get this rare infection which causes the brain to swell will die.

I don’t remember a huge amount from my Mum being so ill, and I think I was in some ways lucky that I didn’t really understand how serious it was. My Mum mentioned the other day how she has already had a close call with death and doesn’t fancy another one. Her immune system is not good, one of the things which has been damaged by this infection, but she has to work, she has to do food shopping. She is having to risk things to try and keep the world running, to try and keep me safe. We have no idea what would happen if either my Mum or myself were to get Covid – 19. My Mum has asthma, and a weakened immune system, she is in the 50 – 65 age range (sorry Mum!). She would likely end up of CPAP or need ventilated, any more serious pressure on her brain could cause a huge amount of damage. Me, well type one diabetes could mean the infection would cause very high blood sugar levels, it could lead to ketoacidosis and then a coma. On the other side, managing those high sugars for a long period of time could cause damage to my liver  – the poor organ already has to do the job of my gallbladder! – I could end up needing a transplant. I have weak muscle tone – a diagnosis that has never really meant anything specific, but I know after having viral pneumonia that my diaphragm muscles and rib muscles can only take so much – I don’t know if they would be strong enough to keep me going.

We need to work together to get through this, people need to see each other and not just walk by, people need to presume less and think more. Is it really a victory if restaurants and bars can be open, if cinemas and theatres can open again and major films be released once more if it comes at a time where those who know the most inconvenience are yet again at a disadvantage? I’m sick and tired of missing out due to illnesses and conditions – I often get frustrated by this in various ways, but more than that I am sick and tired of missing out when others are not, when others can carry on with their lives. Up until now it was annoying, sure, but they were not to blame. Now those healthy people, they are to blame, they are a part of the problem, and it’s about time they saw it, thought about it, gained some compassion. It’s about time for them to step up and really see the rest of the world, we are just as valid as healthy people and we deserve the same happiness and fulfillment in our lives.

Thanks for reading everyone, I apologise that this was a bit rant-y but it needed to be said. I needed to let this out into the world and I hope some of you will understand whether you are in a similar boat or whether you can only empathise, thank you. I hope everyone reading is continuing to get through this mad world we live in, and as always I love hearing from you all, the good, the bad and the strangely specific – they are all welcome here! Speak to you soon 🙂

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