Chronically Ill Kat

Three months of lock down, and many people have really struggled, being stuck inside, not seeing friends and family, and generally having no exciting plans for the future. Not to mention, job and financial insecurity, lack of access to necessities, and the plethora of other negative effects the corona virus has caused people. It’s a hard time for many people. But for me very little has changed. In fact, not wishing to show off, but I am highly trained, almost professional, in the art of social distancing, staying home, and cancelling all my plans. I have been honing my skills for the last five years and am well practiced at many of the things it turns out are necessary to get through a global pandemic.

In many ways, if you ignore the obvious darkness of the global backdrop, the pandemic has very positively impacted my life – aside from the fact that it could be very bad if I get corona and I’m stuck in a different country to my family. Suddenly, instead of missing out on the exciting plans of my friends and family, no one is really doing anything that would give me FOMO. Better still, my friends have all the time in the world to call me, so my social life has increased ten-fold. And if I wasn’t busy enough with that, I have all the free, online theatre and live music that I could want, available from my bed – and I can take any number of online courses – again, now, suddenly, also free. It’s great!

But that isn’t the full story. There are a couple of things I’ve been finding very hard about quarantine and I think many disabled people can relate to them.

The first of these is that now many people are facing some of the same limitations on their lives that I usually have, they are upset and are constantly talking about going back to ‘normal’ life. In fact many countries are now very rapidly trying to go back to normal. It is very understandable that people are struggling with such a chaotic upheaval, and are having difficulty dealing with such intense, forced life changes, so I do sympathise. However, what people don’t realise is that the life they are hating and complaining so vocally about, is my full time existence. Once the apocalypse is over and they go back to the real world, I will be left living the same ‘locked down’ existence I have had for the past five years, and I have to be okay with that.

After all that time, for the most part I do accept that I am able to achieve less, see friends less and generally achieve less than I was when I was healthy, but when it is constantly repeated that life is terrible and pointless because we have to stay inside, and when complaints about life being boring and meaningless are plastered all over social media, it does make it more difficult to accept that this is my long-term reality. To rub the salt into the wound, these same people are often still able to achieve and do far more whilst in quarantine, than my sick body could ever tolerate. So if, despite their busy quarantine schedules, their lives are currently meaningless, what, by inference, does that suggest about my daily struggle to live meaningfully?  

On the same note, many people are grappling with the fact that they have lost their job or are receiving less pay than before. This is, of course, really difficult and very stressful, I definitely want to acknowledge that. What I find invalidating is that several people I know in this situation have complained to me about how little the government gives them in terms of welfare, and how much information about themselves they have to hand over in order to receive benefits – as if I don’t know.

And I can’t help the comparing the fact that as a disabled person trying to get benefits you have to give them very personal information about your body, your illness, and your capabilities, in order to be judged as to whether you are lying or not about your sickness. And then, if you are lucky enough to receive disability benefits, not only do you have to constantly repeat this process, but you do not even receive minimum wage and are expected to live off of a tiny amount of money each month – and be grateful.

Furthermore, as a disabled person on benefits, you are not permitted to save money because you will not, then, be eligible to receive further benefits and you cannot marry, unless your partner’s wage is enough to pay for both of you, because if your partner earns too much, again, you lose your benefits. This seems worlds apart from the temporary discomfort of someone applying for corona virus benefits.

As a member of the disabled community, it is hard to hear people complaining because they have suddenly come face to face with our permanent reality. It is especially hard when there is no acknowledgement of the fact that for years, many of those same people have been very comfortable demonising the ‘benefit scroungers’, thereby allowing disabled people to suffer the lifelong financial instability perpetuated by the benefits system.

The second thing I’ve been finding difficult to process is actually how easy my life has suddenly become, ever since we started the lock down for corona. Or rather, I am really enjoying how easy my life is now, and how many more opportunities I have in the corona world; but it makes me feel angry, hurt and upset – not only for myself but for the whole disabled community – that suddenly, overnight, many of the things we have tirelessly fought for as a community, have been seamlessly introduced.

Many of these things were considered ‘impossible’ when disabled people asked for them, but now the rest of the world needs them, suddenly everything has happened almost overnight, or at least in the space of two weeks – suggesting that, in reality, the problem never was that these things were impossible to do, but that people didn’t want to put in even the most minimal effort in order to make the world more accessible for disabled people – now that ‘valid’ people need access, it is worth doing. This is something I have felt for years but it has never been made more explicit than now. And the realisation of what that means in terms of how little people actually care about our community is intensely difficult to process.

What am I talking about? There are so many of these, very small, very simple things that would have really helped me as a disabled person to get more out of life and to be financially more stable. To name a few examples: at university I struggled to meet deadlines and attend all the classes that I needed to attend. In fact, at my university we had an attendance policy; if I missed class five times in the sixteen-week semester, I would fail that course. But despite the fact the university knew that I was very sick, this attendance policy was never flexed for me, and there was no way to avoid physically being in class. The way I passed university was by making myself far sicker, turning up to school even when I was too sick to sit up, and for the rest, having teachers who genuinely cared about my welfare actually lie on my behalf, about my attendance. Suddenly, because class cannot happen physically, there are live streams of every lecture and seminar, and this has seemingly happened very quickly, because it really is not so difficult to do. So why did that never happen for me and the other disabled students at my University?

Other examples are, for instance, the fact that theatres and ballet companies are live streaming different shows every week. I had to stop going to the theatre two years ago because the sheer volume of the performances made me too sick and I couldn’t guarantee that I could make it through a whole performance, or even make it to the venue on the day for which my ticket was booked. It is something I have really missed. Suddenly, once more it is possible. Likewise, pub quizzes, live talks, concerts, DJ sets, friend and family hangouts, yoga, therapy, school – all possible now.

Suddenly jobs that have been impossible for me to apply for, no longer require you to be at the office to work; working from home has been shown to be as effective, and is therefore possible, yet for many disabled people applying for jobs, or searching for possible openings, we have been ineligible to work because we are unable to get to the office. If these things had been around for the entire time I have been disabled I can guarantee that I would have had a far higher quality of life, and a far less devastating identity crisis when I realised I could no longer partake in the normal activities of the world. And I wouldn’t have this sense that I have become a boring person and that my life is meaningless – literally because I wouldn’t be an outcast from the world.

Don’t get me wrong, it is really awesome that we have these things now. Suddenly. the world is substantially more accessible to everyone. But the fact that this has happened so quickly is not because people are worried about disabled people, it is literally because able bodied people are also no longer able to go out, so something has to be done; and the disabled community is left feeling unappreciated and uncared for. Many of these accessibilities are adaptations thought of by disabled people, asked for by disabled people and denied to disabled people until now.

Where was everyone when we were stuck at home isolated from the world? Why did nothing change until now? There is a definitely a very bitter taste that comes from being shown once more how unimportant disabled lives are deemed to be. And I know that I am not the only person in the disabled community feeling angry and upset at the lack of value that our lives are given. To many of us, it is just more evidence of a world that enables the healthy and disables the sick and disabled.

Currently in the Netherlands we are in the process of returning to normalcy, and it seems like the fears I have been having, that disabled people will be forgotten as soon as we come out of lock down are in fact coming true. The country is opening up without any new mechanisms to control the virus, instead they plan on having semi regular lock downs when the emergency wards get too full. This means that anyone falling in the higher risk category, or their relations, house mates and friends are being completely ignored in the exit strategy. Or even worse, they are being deliberately sacrificed in exchange with the economy. There is more to discuss about this strategy than I have space for now. But what it does demonstrate is that already, in the first two weeks of beginning the transition from lock down to “normal life”disabled people are already being missed out.    

To be very honest, in many ways I’m not sure that I want the lock down to end. I am more included in the outside world and more connected to it than I have ever been in the entire time I’ve been sick. All I can hope is that, once lock down is ended, and we return to some sort of normalcy, disabled people will not once more be forgotten, and all the adaptations that have been made during this time are not just left behind as corona-specific adaptations. If this happens, as seems very likely, it will be all the more devastating. I really hope that people remember the isolation they have felt during this time and carry on reaching out and making the world more accessible for those of us who are stuck at home beyond the time of corona virus.

As we have seen from the last few months, with modern technology at our fingertips, battling isolation at home, and making our world more accessible is really not as difficult as it has been made out to be – so please, let’s keep it that way.