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The Invisible Challenges of Covid-19 affecting the Disabled Community

May 22, 2020 -
Pippa Stacey drinking tea on the sofa

A month into the UK’s lockdown, the general public are just about settling into routines and adapting to their new circumstances. It’s been uplifting to see many non-disabled people going out of their way to support the most vulnerable in society, and it’s important not to discount the incredible work that care workers, charities and volunteers have been doing to ensure we’re as safe and secure as possible.

However, there are still a number of more invisible challenges the disability community are facing, as a result of Covid-19. As discussed in a previous post, by no means do I want to make a case against the support that those ‘shielding’ and most at-risk are receiving; rather, also raise the profile of those with long-term conditions who might not technically fall into this high-risk category, but who are facing equally as significant hardships. Based on my own experiences and those compiled on Twitter, below are just a handful of the issues the disabled community felt were less easily seen by others.

Social Distancing as a Wheelchair User

Carrie-Ann has encountered numerous difficulties with maintaining an appropriate distance from members of the public:

My husband and I are both at risk of complications should we get COVID-19. We’re being extremely careful to isolate and social distance when we do leave the house, but the carelessness of others means that this can be difficult. I use a wheelchair with a power add-on to walk my dog daily – I really value this time outside, alone, it’s almost the only independence that I have right now. Because I rely on dropped kerbs, often I need others to step into the road to maintain a safe distance. I actually had an accident trying to avoid others a couple of weeks ago, and found myself stuck in a dangerous position. This made me feel anxious, scared and very vulnerable – should I accept the help of strangers to make my wheelchair safe? Impossible without them touching me or my chair, putting me at risk of coming into contact with the virus. This could have all been avoided; if you are able to, please, simply step out of the way to allow a wheelchair user to pass safely.”

Management of Routine Medical Care

Laurie, who has complex health conditions, worries how her usual procedures might be affected by the pandemic:

"I’ve had an NJ feeding tube for three years now, and it’s changed in hospital under sedation every 12 weeks. I've now heard that people like me are being asked to persevere for as long as possible before their tubes are changed. I've lasted 14 weeks before, but it was so painful and tough. I don't know what I'll do if my tube can't be changed as usual, and I'm afraid I'll be forgotten. I'm so worried and don't know how to make it better."

Independent Living Without Assistance

Like many chronically ill people, Jo relies on a cleaner to help with household tasks; doing so ensures she can better manage her condition. Therefore, when it’s no longer possible to have regular visits, issues can arise:

"Although I'm in quite a good place compared to last year, having to tackle all my housekeeping duties without my usual cleaner has wiped me out. I tried to vacuum sitting down, but five minutes of this left me unable to move my wrist, elbow and shoulder for the rest of the day. I couldn’t open my bleach - I didn’t know I couldn’t because my cleaner usually does it. I usually save three days of washing up for my cleaner, but now I have to do it every day. Although I can put the washing on, I cannot lift the wet things out and hang them up without great cost to my energy envelope. I cannot change/wash my bedding but my cleaner runs in with her face mask on every two weeks and does this, taking it with her to wash for next time. I’m not houseproud by any means, but it makes me feel low when I can see the dust and dirt accumulate. I’m still paying my cleaner her regular pay because she’s lost all her income and mine is the same. She’s more than a cleaner, she’s a link to the outside, a friend and confidante. She texts me every day to check on me."

Elderly People aren’t able to engage with the benefits of technology

In many ways, younger people who are shielding or self-isolating have the advantage of being better connected... in the digital sense. Having grown up around the internet and social media, I know first-hand that technology may go some way in reducing the effects of loneliness.

For elderly people, however, communicating via the internet, or even via mobile phone, may be outside of their comfort zone. As mentioned in this post about supporting elderly people in isolation, thankfully there are more accessible gadgets such as video door phones on the market, but the fact remains that efforts should be made to ensure that elderly friends and relatives don’t become even more socially excluded.

Lack of BSL Interpreters for Public Announcements

Our country is relying on regular communications from government officials over this period, but as Liam points out, even their televised announcements still aren’t accessible to all:

I know a lot of fellow deaf people in our community, who sign in British Sign Language as a first language, have been asking for a BSL interpreter to be present at the daily coronavirus briefings for weeks. The fact they’re continuing to be denied access is unacceptable. “While it’s good that the BBC News channel provides an interpreter at present, not everyone can access this. Making these briefings accessible to deaf people is the responsibility of the Government, rather than individual broadcasters.”

Delays of Medication and Specialist Supplies

Hannah shares the difficulties she’s personally faced due to pharmacy services being over-stretched:

Since the pandemic started I have been unable to order certain stoma supplies and medication. I’ve had to accept substitutes on many occasions which isn’t good when your stoma skin is sensitive. I usually plan my medication and stoma delivery to come all at once so I can keep track, however they have now become staggered due to supply issues and it’s confused me to know what I have and what I need to order. Delivery times have increased by over a week so I need to order well in advance and sometimes I will get a call to inform me they can’t get certain products. It’s no one’s fault but it’s become quite stressful and worrying. I have found stoma supplies that work perfectly for me and not being able to get them causes me a lot of anxiety.”

Reduced Mental Health Support

Of course, we can’t forget that looking after our mental health is just as important as managing our physical needs. Jenni shares how her own psychology appointments have been disrupted: I usually have appointments with my specialist psychologist every two weeks. I got sick just before the lockdown was implemented and was reassured that phone appointments would continue. However, the day before my next appointment I got a text saying all clinics have been cancelled… including phone appointments. That was also the day after my grandfather had passed away. I was left in a vulnerable place completely in the lurch, with no idea when I'd next be able to talk to someone and no one to contact in the meantime.”

The above issues outline just a few of the topics the disability community felt were being less talked about, and even more can be found in response to this tweet.

It’s clear to see that many people are facing hardships; not necessarily from the Coronavirus itself, but from the knock-on effect the pandemic has had on our already stretched-to-capacity health and social care system. Although those who are shielding and self-isolating due to health issues still have a significant period of lockdown ahead, hopefully we’ll begin to see a light at the end of the tunnel soon. In the meantime, it’s incredibly important that we keep talking and facilitating conversations about these important issues, ensuring we’re as comfortable as possible at home, and that we continue to look out for each other. Things might seem tough, unbelievably tough, but you’re not alone.

Pippa Stacey
Pippa Stacey

Pippa Stacey is a chronically ill writer, who blogs at Life Of Pippa. As well as fundraising and campaigning, she works with various charities and organisations, producing written content to support their aims. Her other areas of interest include invisible illness, independent living, inclusive theatre and the arts, and accessible education and employment. Connect with Pippa on Twitter @lifeofpippa_, and Instagram @lifeofpippa, or LinkedIn

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