‘People are Dissociated from Collectivism’: Disabilities and Covid-19

How has the pandemic affected working, social and political life for people with increased vulnerability to Covid-19 because of disabilities or long term health conditions? Our Covid-19 Community Reporter, Rosy Bremer talks to local resident and former S&C reporter, Emily Priest.

Rosy Bremer: Did you get an NHS letter telling you to stay indoors for three months, or did the NHS shielding letters fail to cover you?

Even though I have fibromyalgia and I’m on immunosuppressant drugs, I wasn’t given a shielding letter because I was considered too young to be a risk.  So I took it upon myself to shield and I deemed myself to be part of the shielding group. My GP agreed with me and in fact, she was the one who explained to me that because I’m a young, fit and healthy person apparently I’m not considered to be high risk or needing to be shielded. But I shielded myself from the moment I could. I was working in the libraries and then from the moment the lockdown hit I was working from home, shielding for my own benefit because my immune system is all over the place and the risk from coronavirus is really high and I don’t feel safe in this city.

I know you as an incredibly active, busy person so it must have been really difficult for you to reign in all your activities?

At the end of last year my health took a bit of a decline so I had to stop being as active as I necessarily had been. This was a big blow for me and it’s been hard to swallow that. So my life before lockdown was getting used to being at home a lot more often and being reliant on services such as delivery services. It’s got to the point where I can’t do my shopping very easily because I get very tired.  Since lockdown, nothing’s really changed on the staying indoors front; I’ve got used to these four walls as I’ve been seeing them a lot.

The problem was the national lockdown put a lot of strain on how I worked round my every day life. I couldn’t get groceries because all the delivery slots had gone, all the food’s gone up in price, so there’s just been a few things that’s made it difficult.

Going out to get just a little bit of exercise makes me really anxious and worried and I can’t easily do the things that I could before. Definitely the structures that I put in place to accommodate my disability fell apart during lockdown.  A lot of services, like GP surgeries and therapies that I was meant to be going to have been cancelled.  I was going to a chiropractor and physiotherapist regularly, and also I was due to start a course at the pain clinic at the start of July. I was really looking forward to it and really hoping that maybe I could get some help and that’s been cancelled altogether. First they were going to re-arrange and now they don’t know when they can re-arrange; they’ve just put me on a waiting list until whenever. So I understand and I get it, but it feels like the little support I was getting before is now down to the bare bones.

Has the heightened anxiety about the whole pandemic situation impacted on your condition?

Definitely. My fibro flares up with stress and anxiety and that’s obviously been going up recently. First of all, I’ve got the overlaying worry of coronavirus and also as a disabled person I’ve been trying to go out more regularly to get a bit of exercise. I find the care and the consideration from other people just isn’t there. It’s very difficult because I’m going out with a mask and other people aren’t and they’re not socially distancing. It makes me scared to leave the house and scared to start living again and get back on my feet. That in turn flares up my condition, so I have a bad day and I have to stay in bed and it turns into a whole vicious cycle. What I’ve noticed is that throughout this whole pandemic disabled people have just been overlooked and that’s caused me more anxiety and stress.

Did you have any contact with any of the independently organised, mutual aid groups helping people out during lockdown?

I haven’t had much contact with any of those groups. I do have a social prescriber; although I couldn’t see my GP and everything I had in place had fallen down, I did have a social prescriber who helped me quite a bit. She got some food parcels sent to me when I was struggling and she also gave me some things to help around the house.  Sadly the amount they can do to help me is limited because of coronavirus. Other than that I haven’t actively gone looking for the help, because my partner helps me quite a bit. I also didn’t want to be one of those people who doesn’t necessarily need the help but they reach out anyway. I didn’t want to take from other people because the work that is being done is very limited. People have been absolute heroes especially in the community but there’s only so much they can do and I don’t want to put stress on people when I had help from my partner and from the social prescriber as well.

It seems like there was a lot that wasn’t really working for you; can you think of anything that could’ve been done nationally or locally to help you through the lockdown and also in the post-lockdown period when coronavirus hasn’t gone away and we all have to somehow manage the risk?

The first thing is and I stand by this absolutely, people should’ve embraced technology a lot sooner. We’ve had face time technology for years, as well as all of these things that people have been discovering for the first time.  If we had adopted Zoom appointments for the NHS much earlier on, we would’ve had the structures in place to maintain that safely throughout lockdown. That can be translated into so many other things like group workshopping. I know it’s not ideal but it’s better than nothing; if we had good infrastructure online and good technology, with programmes to put a computer into every household and have that education for people it would help so much. It would help with culture, with live arts and it would help with health so, so much.

I think it’s a massive shame we didn’t adopt that sooner for those who are the most vulnerable.  Some people were very isolated after lockdown and their mental health was depleted because they didn’t have anyone to talk to.  Digital isn’t everything and Zoom isn’t perfect; you can’t hug people and love people and be close to them but it’s still brilliant.  It still helps to fill that void and I think if there were a tighter network of tecnological solutions it would’ve helped people’s mental health as well.

In so many ways, the Government should’ve just bucked up sooner. I think their whole approach to everything has been slow. I think it’s been completely corrupt, it’s clear that they only care about money and they only care about status.

I think a lot more needs to be done to raise awareness about disabilities in all people, in all walks of life, whether the disablity’s hidden or not. I mean more than just a flowery green lanyard, I mean actual campaigns and I mean training in the workplace.

I think also there needs to be more infrastructure for working at home. If that had have been put in place, things would’ve been so much better. The transition from working at work to working at home would’ve been a lot smoother for people.

There is too much focus at the moment on money and getting life ‘back to normal’. I think the general public is dissocciated, they are dissociated from collectivism and from this whole greater good idea, as well as dissocciated from other people and from empathy. I feel like we’ve forgotten a lot about caring for others as well as ourselves in Western society, especially when it comes to disabilities, and I think if we had more emapthy as a whole and more understanding, people would be a lot more willing to wear a mask. They’d be a lot more willing to help out their neighbour, they’d be a lot more willing to understand the disabled person.

The government should’ve been a lot more ruthless because this is a pandemic. It’s a matter of life and death. It’s not a case of we’re trying to plant chips in masks and track you. There’s no conspiracy theory here.

But some people do argue the conspiracy theory view. Do you think that comes from a lack of education and a lack of engagement with society as well as a lack of political experience?

The problem is [also] the media. That needs a complete overhaul and that should’ve had an overhaul years and years ago. There’s a problem with how the media has depicted certain things and certain people such as Dominic Cummings – making him out to be ok and making Boris Johnson out to be just like the rest of us. It’s just propaganda. I think if we had the news as an educational platform as it should be, then I think we’d be a lot better off. People wouldn’t be panicked and they wouldn’t be scared, or at least not more than is necessary.  They would feel a lot more connected to other people. We need a lot more of that.

You mentioned earlier that you don’t feel particularly safe in Portsmouth. Is there anywhere you can think of where you would feel safe, or safer?

I would pick to be in Japan in an instant.  They are far more collectivist and members of the public care more for their neighbors. People wear masks and don’t complain because they know it’s for the best and although Japan is far more crowded than here, people are far more considerate. I think Portsmouth people could learn a lot from Japan or other Eastern countries. I try to go outside and in Portsmouth, people aren’t being safe, wearing masks or social distancing. In fact someone walked into me in my local corner shop the other day and didn’t apologise and an anti-masker coughed on me on my way down Castle Road because I was wearing a mask.

What would you say to people who object to wearing masks?

I would say that this issue isn’t about you, the individual, and it’s not time to be selfish. Put on the mask, be considerate and think about the death toll. People are dying, this isn’t a conspiracy and we need to care more about others first than ourselves. If our Western societies were a bit more like Japan and had that shared consensus for the greater good, we and especially people with disabilities would be able to live a lot happier and safer lives.

S&C has been awarded funding from the European Journalism Centre Covid-19 Support Fund to explore the social impact of Covid-19 on diverse communities and sectors in Portsmouth:

  • voluntary sector, including charities, community groups and social enterprises
  • small businesses and self-employed people
  • BAME communities
  • people with disabilities

We have also been awarded funding from the Public Interest News Foundation Emergency Fund to explore the social impact of Covid-19 on migrants, and asylum seekers and refugees.

If you are interested in sharing your experiences in any of these areas, get in touch with us over on Facebook and Twitter, or email us at submissions@starandcrescent.org.uk

Image by djedj from Pixabay.

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