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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


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Virtually inaccessible

by Dai O’Brien

With the current climate of everyone working from home, remote meetings and dashing to move all teaching and course materials online, there seem to be two schools of thought opening up in discussions on social media. One is a response of almost resentment and caution, a feeling of being rushed into something that most academics are not trained for and have no experience of. The other is a feeling of almost relief, a ‘finally!’ moment from those who are more willing or able to embrace the online teaching classroom and virtual meetings.

However, what neither of these two camps seems to engage with are the problems of access for deaf and disabled people. There seems to be an assumption from many that placing resources online magically makes them accessible to all, and that technology will solve all ills. I’m sure that many of us are quickly finding out that this isn’t necessarily the case. In this blog post I will focus on deaf access to this move online for academics working in HE, not only for teaching, but also for professional, collegiate matters.

Many of the insights of this blog post are from research I conducted as part of my SRHE Newer Researchers Prize funded project, The Spaces and Places of Deaf Academia (2017-2019). This project focused on the experiences of deaf academics working in HEIs in the UK, exploring their experiences of the workplace on both a physical and social level. While this research obviously was conducted before the current pandemic, there are useful lessons that can be taken from the findings which are worth bearing in mind during the current migration to online and remote working and teaching.

If anything, this move to online working exacerbates rather than resolves many of the problems deaf academics face. While it was often difficult before to find BSL/English interpreters or other communication support workers at short notice to attend meetings and to interpret or provide access for everyone to those meetings, it can be even more difficult now to find interpreters and other communication support workers who have the technological ability and resources to provide the access that deaf academics need. Even when they do have the right technology and skills, meetings held over apps such as Microsoft Teams or Zoom require pre-meeting meetings between the interpreter, the meeting chair and the deaf academic to ensure that all parties know how to use the technology, the chair understands how to run a remote meeting, and new ground rules are established and upheld to ensure access for all. This is all extra labour required from the deaf academic to ensure that they can participate on a level playing field. Sometimes these pre-meeting meetings last longer than the meeting itself! If one is to consider a similar situation arising where a deaf student needs access to a seminar or lecture live-streamed online, power imbalances in the student-lecturer relationship may lead them to feeling unable to insist on such a pre-lecture meeting to iron out any potential problems, resulting in them missing out on vital contact hours.

In the first couple of weeks of remote working, I have found myself sometimes inundated with meeting requests from colleagues, managers and students. During a normal working week I would have felt confident and comfortable in re-scheduling these meetings for a time when I had interpreters booked. But the immediacy of the need to navigate the sudden change in working conditions, and the relaxing of usual work boundaries and time frames that working from home seems to impose, have meant that this has not always been possible. Remote working comes with an implicit expectation that you are always available to meet, anywhere, so long as you have an internet connection. This isn’t true for those of us who need communication access provided by BSL/English interpreters. We are still restricted by the availability of the interpreters, and our ability to pay them. Luckily, I work with colleagues who understand this. However, similar restrictions apply to students. They may have limited funds to pay for communication access, access which is required not just for face-to-face or streamed teaching, but also any podcasts, uncaptioned videos or other resources that we feel able or compelled to share in this new virtual teaching space.

Some of this technology offers automatic captions or other automatic access options. But very often the output of these automatic functions is extremely poor, if they work at all. For deaf students (and academics) these disjointed, context free, incorrect captions are often more of an additional barrier than an access solution. It is not enough to rely on technology, or to expect it to act as a saviour. We all need to be considerate and critical of our new online remote approaches and consider whether or not they are truly accessible.

Dr Dai O’Brien is a Senior Lecturer in BSL and Deaf Studies in the School of Languages and Linguistics, York St John University. Read his 22 November 2019 blog ‘What are the experiences of deaf academics working in UK HEIs’ here, with BSL interpretation.

References

O’Brien, D (2020) ‘Mapping deaf academic spaces’ Higher Education DOI: 10.1007/s10734-020-00512-7

O’Brien, D (2020) ‘Negotiating academic environments: using Lefebvre to conceptualise deaf spaces and disabling/enabling environments’ Journal of Cultural Geography 37(1): 26-45 DOI: 10.1080/08873631.2019.1677293