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COVID-19 & Welcome to my world

First of all, I owe you a sincere apology for not continuing my blogseries for some time now – life happens – or should I rather say – surgeries happen…But that is another story for another time.

I know, in my previous blogpost, I have promised to tell you more about my advocacy activities – and the MS Sessions –  but, I believe, there are currently more important matters happening to us all (whether we consider ourselves able-bodied or disabled) than solely my personal journey.

So, where was I? Important matters…. Yes, COVID-19!

I know… It is a topic which engulfs our every being (it also puts a strain on my nerve) – and sometimes we just do not want to hear another word about Mr VID (Wait…are viruses even gendered?). Still, please do bear with me, whilst I share my thoughts on current affairs. Are you in?

Through this pandemic, I see a chance for opportunity – a chance for growth and connection. Just look at us here – using e-learning, home office and so forth, starting almost from scratch. And although, these are matters the disability and chronic illness community has fought for so long – COVID-19 showed that it is possible for most of the employees (clearly not all, but still – isn’t this amazing?) when there is no other choice. I sincerely hope these measures will be kept up for the vulnerable who need this extra support and options long after this crisis is over. There is no reason to deny it anymore – it can be done and it is working! It is also in my hope that people with health conditions will not be forgotten (or be pushed aside) post COVID-19.

Basically, going digital now affects your (used here for all non-disabled/healthy people) daily lives in ways it already did ours (used here for disabled people/people with health conditions) long before. And I truly believe that we can use this opportunity to connect with each other through differences, or should I rather say: similarities? Being isolated – having to say no when you would have loved to say yes to meet up with your friends and family – wanting to be able but circumstances prevent it,… those are things that happen to us every day in our daily lives. Often then, we look at your world – and in a certain sense grieve what could have been! I know these situations are hard to understand if you are not “in” them. But now, in midst of the COVID crisis, you have a small glimpse of our life… and instead of us becoming a part of your world, you became part of ours – even so for just for a little while (and luckily not to the full extent!)

In the meanwhile, I would like to share with you how to make this ‘adventure’ more meaningful. We unfortunately (or fortunately!) have had a little while to gain experience in how to deal with a couple of things that might be new to you.

  • To start, being faced with uncertainty about the future is anxiety provoking – so, a first thing to remember is that all you have is now, not tomorrow – not in a few months – simply the present. Become aware of ‘the moment’.
  • Second, take each day at a time – this is your new ‘normal’ for a while. Whilst it may feel uneasy, it is not unusual to feel this way when confronted with a new situation. You will adapt, I promise. And is life not merely a series of adaptations? These take time.
  • Third, as luck strikes us, technology has already reached a point where we do not have to rely on messenger pigeons to contact our loved ones – or employers. Yay! 😀 If you want, stay in contact with those you care about – no one has to go alone through this period. There exist wonderful apps which help us in this endeavour – and although, it certainly is not entirely the same as meeting face to face – it is as close as we can get. I would have loved to attend conferences and meetings in person – but, as this is not possible, I am super happy that it has been made possible for me to join them from a distance. And isn’t that showing us – that the world continues despite challenges? That we have not been robbed from our connections? It is about finding out what works for us.
  • Lastly, may I suggest that we – or rather everyone – uses this time for reflection? Is there something we never had time for? Like that book that is staring at us or the cookies that are waiting to be baked?

In a certain sense, as humans, we always find creative ways to deal with the cards we have been dealt. So, I hope these starting points nudge you towards your destination and pick you up if you have felt ‘locked down’. I’ll talk to you soon, take care everyone!

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Susanna van Tonder

Susanna van Tonder

Susanna van Tonder is a prominent figure within the patient community (national and international) where she fulfils various roles within charities whilst raising awareness and advocating for the right of people with disabilities. She pursued her studies in social sciences. Her peak interest in health, social justice and social engagement was caused by her own multiple sclerosis diagnosis and since then she has won a youth reward for her advocacy work, has been present at several events at the European Parliament and featured in newspaper articles. In Luxembourg, she is a part of the board of Multiple Sclérose Lëtzebuerg. In addition, she joined the Higher Council for People with Disabilities in Luxembourg in 2019.

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A great post that puts into words what I’ve been trying to since the pandemic began. I think you really hit the nail on the head when you said: “instead of us becoming a part of your world, you became part of ours”. The unfortunate truth is that non-disabled people have an ‘out’ while we don’t and they’re looking for it at every turn. The Scottish PM was criticised the other day for being honest and saying ‘I can’t give you an answer, it would be irresponsible for me to do so’ regarding the lockdown. Rather than being happy to finally have a politician being straight with them people were complaining that they ‘didn’t learn anything’. It struck me that they’d rather have false hope rather than none at all and that’s the problem. When the end of the lockdown happens and the pandemic is over they’ll just go back to their “normal lives”, how do we stop them from just looking back at this all as a story to tell future generations? How can we get them to learn form it and realise the disabled community lives like this *every day*?

One thing I do know is that opening communication is the key and talking about it as you have done here is so important. Hopefully, I’ll be able to find my own words and add my voice to it too.

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