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The Society for Research into Higher Education


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Welcome to the new second class: Covid negative with underlying health conditions

by Katherine Deane

HE staged a joint seminar with the National Association of Disabled Staff Networks (NADSN) on 21 July 2020, after NADSN published a Position Paper on “COVID-19 Post-Lockdown: Perspectives, Implications and Strategies for Disabled Staff” on 21 May 2020. The paper provides a list of 12 recommendations for higher education institutions to consider when planning for reopening campuses. Seminar participant Katherine Deane (East Anglia) gave her take in this, the first of two blogs.

First please understand the risks – you are given a bowl with 100 sweets in it. You are invited to pick one to eat. But, you are warned two of those sweets will kill you, 18 of them will make you so ill you will be hospitalised, but most people find their sweets OK.

Have a sweet.

No? These are the risks the average person runs with Covid-19.

Now, let’s make you over 70, or with an ‘underlying health condition’, so your bowl of sweets has up to 15 that will kill you and most of the rest will hospitalise you. I hope you’ll agree no sane person would voluntarily eat those sweets.

But I can guarantee in weeks to come I will be gaslighted; told I am over-reacting, being over-cautious as I continue to self-isolate. You see I am at higher risk because I have multiple disabilities which mean my capacity to be resilient in the face of Covid-19 is reduced. I’m not at highest risk, but I would expect to be hospitalised at least with Covid-19.

So, when the lockdown is released and you can “get back to normal” spare a thought for people like me. We will be staying indoors, working from home (where we can), and hoping to not pick up Covid-19 as it sweeps through our communities again and again. Yes, the numbers of those infected will be lower, the risk reduced, but would you want to risk eating even a single sweet from that second bowl? Every trip outside, every meeting, every class, every hospital appointment, will offer people like me another chance to catch Covid-19. And until we have a vaccine – likely to be at least 2 years away – this will be our life. We will be living in ‘splendid isolation’.

This will affect people who previously would never have identified as disabled – asthmatics, diabetics, anyone over 70. Their lives will be disabled by the need to not catch Covid-19. For up to 2 years. We have lives to lead even if they are restricted by Covid. So, we hope that you remember us and continue to offer to get our shopping. We hope that friends will still call us. That theatres and bands will still offer us virtual viewings. For those in education, whether at school or university, we hope that these institutions continue to support online learning for students who fear returning to the large crowded classrooms and lecture theatres.

We hope (probably against hope) that the government will protect workers’ rights to not take a sweet from that toxic bowl, and that whether we are in the highest risk group or just have ‘underlying health conditions’ we are allowed to work remaining isolated if we choose to. We may wish to work from home, and we would like that to be a right where possible. We may need retraining if our previous work role can’t be performed virtually. We would love it if working from home was not implied to be shirking. We would love everyone to remember how difficult ‘splendid isolation’ is to live in.

And remember this is likely to affect huge numbers of people – I guesstimate at least 20% of the working population. With skills and talents and value that should not be wasted just because of a virus. Covid-19 is going to have massive impact on society. Let’s not allow it to create a new disabled underclass isolated and having to make invidious choices between poverty and health.

Dr Katherine Deane is a wheelchair using Senior Lecturer in Health Sciences and Access Ambassador at the University of East Anglia. She is working to remove barriers to accessing life so people can express their brilliance. Post Covid-19 re-opening guidance with a focus on disabled visitors available here https://embed.org.uk/covid-19-reopening


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Don’t call me vulnerable

by Katherine Deane

SRHE staged a joint seminar with the National Association of Disabled Staff Networks (NADSN) on 21 July 2020, after NADSN published a Position Paper on “COVID-19 Post-Lockdown: Perspectives, Implications and Strategies for Disabled Staff” on 21 May 2020. The paper provides a list of 12 recommendations for higher education institutions to consider when planning for reopening campuses. Seminar participant Katherine Deane (East Anglia) gave her take in this, the first of two blogs.

Covid-19 came along and suddenly we had a whole new dictionary of terms to learn. Social distancing, social isolating, shielding. But some of the terms were already ‘known’ and came with their own baggage. Some people were told they were vulnerable and should shut themselves away – shield themselves from the virus. But as my 79 year old fiercely independent mother said: “I’m not vulnerable, I’ve never been vulnerable in my life.” And she was right – she was at high risk of poor medical outcomes if she were to catch the virus – but she wasn’t vulnerable – she was in a vulnerable situation.

Disabled people, people with underlying health conditions, older people, have the same rights to life as anyone else. We are not vulnerable. But this virus – and the governmental response to it – does place us at higher risk. But risks are something that can be reduced, mitigated, done something about. Risks are the responsibility of all of us to manage, whereas vulnerability lies with the person – and there is nothing that can be done about that.

These labels – vulnerable, elderly, frail, with underlying health conditions, disabled – became an excuse to dismiss the deaths. Oh well, what could you expect – they were already ill and then they got Covid-19, so of course they died. The government reassures the public still – it’s only if you are ‘vulnerable’ that you need fear this virus. But it’s become clearer and clearer that this has allowed a great toll of unnecessary deaths to be excused. The language has prevented criticism and deeper examination of why these people died. After all, they were vulnerable – so they must have contributed less, been a burden on society. The responsibility for their response to the virus was laid upon their shoulders. These people are vulnerable – there is little we can do – so let’s shrug our shoulders. Should they even expect them to have the same access to healthcare, social support, or respect even, as a fit healthy young person does? Their deaths are ‘to be expected’.

But what if the tables were turned – if the virus took the young and fit preferentially. Would there still be stories of the deaths of ‘vulnerable young people’ dying – so sad, but what can you expect? Would they be told off for going outside? Would they be expected to shut themselves away for potentially years on end as they wait for a vaccine? Doesn’t sound so ‘reasonable’ or ‘expected’ now, does it?

We are now seeing that this virus highlights many of society’s inequalities. That it is more likely to kill you if you are black, poor, live in an area of high air pollution. Are these ‘vulnerabilities’ too? Or are they risks? This virus has placed a magnifying glass on some of the structural biases within our society. Are we seeing institutionalised eugenics by neglect?

So, watch your language. As a disabled person I am at risk of an early death from many things, including this virus. We can do – and need to do – something about these risks. Don’t ignore your responsibility for calling for change by calling us vulnerable.

Dr Katherine Deane is a wheelchair using Senior Lecturer in Health Sciences and Access Ambassador at the University of East Anglia. She is working to remove barriers to accessing life so people can express their brilliance. Post Covid-19 re-opening guidance with a focus on disabled visitors available here https://embed.org.uk/covid-19-reopening