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 ‘J’, who has cerebral palsy, about her experiences of the pandemic.
Rosy Bremer: Would it be possible for me to interview you on Zoom, or Skype as we can’t meet up in person, for COVID safety reasons?
J: I find Zoom a bit problematic I’m afraid – as well as cerebral palsy I have hearing loss in the range of human speech, and headphones set my tinnitus off. I did a Teams interview with someone last week, in which she typed and I answered out loud, but otherwise I’m happiest just typing.
So, would it be ok if we did the interview via social media text messenger?
I am on Facebook and use Messenger, so that would work pretty well.
How did it feel to you to shield?
During the first couple of days after I was self-isolating, but before lockdown began, I had a nightmare in which I dreamed that I had been admitted to hospital sick with COVID and was unable to communicate, but I could hear and see that the medical staff were discussing whether it was worth keeping me alive because of my Cerebral Palsy. This was before the news about DNR (Do Not Resuscitate orders) and making end-of-life plans broke, but along with the statistics about the death rate among disabled people it meant that I spent the first few weeks of lockdown feeling very upset and anxious, although I tried not to show it.
[Editors note: During the pandemic, concerns have been raised about ‘unlawful’ DNR orders being placed on care home residents, people with learning disabilities, autistic adults, and disabled people.]
It was also a huge relief, though, as owing to my cerebral palsy and needing to get my wheelchair in and out of the car (and husband working away from home), getting to work was a big struggle even though the office is not far away. I’d taken to paying for a taxi rather than struggle. Also I sometimes find the attitude to my disability rather risk-averse when I am in the office and it was good not to have to be second-guessing people’s expectations.
My husband and I have agreed that it’s been wonderful to make up for the time we haven’t been together, as I’d normally see my husband weekends only and that has been the case for much of the 20 yrs of our married life; something I’ve not found easy.
As I understand it you didn’t receive a letter from the NHS requiring you to shield but you have several risk factors. What are your thoughts about not being required to shield?
I’ve been puzzled that I haven’t been officially advised to shield, but I don’t know how the NHS decided to send out the letters (a friend recovering from breast cancer was informed immediately). I tend not to bother the NHS too much so maybe I was just off the radar.
Since my husband has been around, I have been fine for shopping, but for the first few days he wasn’t around. Luckily someone set up the Fareham and Gosport Coronavirus Volunteers Facebook group very quickly and they were superb. Someone picked up my pills from Morrisons for me, and someone else posted a list of firms helping with deliveries and food etc. At first I was on Ocado priority but with no letter I dropped off, so it would have been problematic. However a local catering firm changed their mode of work from catering for parties to delivering ready meals made by them, and a local farm shop made an exception to their usual delivery area for me and one other person to include my postcode area. So I would have been fine for everything even if my husband had had to stay away. He is also potentially at risk, but was happy to go out and buy extras when needed. At present we are still using the local farm shop and catering firm as well as Ocado, as we feel we need to support local firms as much as possible.
Were you furloughed during the lockdown or were you able to work from home?
I’ve often asked to work from home but was told in the time PC (Pre-Covid) that it wasn’t possible. Several other people in the team were vulnerable and shielding, and my line manager has sent out a weekly email to the team to keep us in touch with developments. I felt well-prepared to shield; the single most useful thing that happened from being forewarned was that I was able to set up an ‘Out of Office’ response in my work email which included my home email address, so that people with enquiries have still been able to reach me.
Since lockdown has started easing my line manager has still been in touch about once a week (I contact colleagues at work if he is on leave so that they know all is well with me). Over the last few weeks we have begun to discuss returning to work, but as long as I can continue to do so my line manager is happy for me to stay here. As lockdown slowly eases I expect the issue will be raised again as apparently most staff are now back, in a differently-arranged office or sometimes alternating sessions. There is some work I can only do inside the firewall, so it will be useful to get back, but I think my line manager would not press the issue if I wasn’t happy.
What do you think would have made it easier for you and your husband, during the lockdown?
Nationally, it would have been good to have consistent, clear and firm instructions from the Government, backed up by medical experts. Also, my husband is self-employed as the director of a small company (himself). The job he was doing fell through in late April and he was not eligible for the freelance support payments. I believe he got a small amount of money from being able to furlough himself. But too many of the government initiatives have been directed at firms with large turnover in normal times.
It was worrying, especially as my husband had a couple of large purchases coming due. I know he lost at least one night’s sleep lying awake worrying. As it happens I discovered I had enough savings to help him out, and my father (who is in Norfolk and I haven’t seen since Christmas) had previously offered to lend us money if needed. In the event my husband now has a job due to start soon so hopefully there will be no permanent financial gap. Many of the events we would have spent money getting to in summer and autumn are not happening in real time, so that has reduced our expenditure, both on them and in travelling costs. I had a £50 insurance rebate from Motability, so we’re not entirely without financial recompense.
The local response of volunteers has been excellent though I have little evidence that there has been council input on the Gosport side (where I live). I use social media a lot anyway, but it has been a real godsend (even aside from the brilliant Facebook work of the Gosport and Fareham Coronavirus Volunteers group) in enabling me to keep in touch with friends so that we can help each other through.
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.