Survival of the Crip-est - 28 Days Later
A month ago, at the start of lockdown, I wrote about the huge amounts of extra time and labour I was having to expend just to meet my basic requirements for safety, health, nutrition, finance and logistics.
I’m re-visiting this, 28 days later, for a quick update on how my issues have been resolved – or not – and to highlight the ways disabled people are still falling through the gaps during lockdown life. I’ll also point to resources that might help anyone who’s struggling.
This is also to say a big thank you to everyone who’s helping me and our broader community during this surreal and scary time.
A month ago, my most immediate safety concern (and the area that was taking the most time to sort out) was sourcing personal protective equipment (PPE) for my personal assistants. This issue has been in the news a lot and there are still shortages in many areas. We’ve been able to get hold of most of the things we need – gloves, visors, disinfectant wipes and basic masks. We’ve also been provided with some great home-made masks by Kala, which I’m modelling in the photo above – she’s still able to make more for anyone who needs them, so let me know if you’d like to be put in touch. Also, here’s a guide to a version that doesn’t require sewing
PPE remains a big concern for many disabled people. I’m lucky that my workplace took the decision to cover the cost of my PAs’ PPE, which has run into hundreds of pounds. But there’s still little clarity about who should be providing this type of equipment – the NHS, social care, or the Government.
I’m asking Access to Work to cover the cost of my PAs’ PPE because it’s an unexpected and necessary cost that relates solely to my requirements as a disabled staff member. So far, they’ve said no but I’ve provided more information which should help them understand why it’s necessary. There are still many people who don’t have what they require and there needs to be clear guidance on how things should be supplied and funded. I’m guessing these are going to be long-term requirements rather than one-time costs.
Several weeks into the lockdown, the UK government finally provided guidance for people employing PAs through the direct payment system. It’s taking me a long time to read and understand this document which doesn’t seem to be available in easy-read or other formats. You can find it here. PAs and other social care workers are now entitled to testing if they show symptoms of Coronavirus. Thankfully this isn’t something we’ve needed to use yet.
Another area of concern results from changes to disabled people’s rights. Many pieces of legislation designed to safeguard disabled people, like the Care Act 2014 and Mental Health Act, have been superseded by the Coronavirus Act. This piece of emergency legislation wasn’t subject to the same detailed scrutiny that most legislation is supposed to get. This Act has made changes which affect what I’m entitled to, and I’m still learning about its full implications. Fortunately, there are some great organisations working to understand and explain the new legislation and to challenge it where necessary, such as Disability Rights TV and The Disability Law Service There’s an easy-read guide to the changes to the Care Act 2014 made by Mencap, here.
On a more positive note, lots of small changes that I’ve been making to my environment have helped me feel safer, for example getting an automatic motion sensor bin instead of one we need to touch. Or moving my bed to make transferring into my wheelchair easier. It’s taken time and energy to make these changes and I’m lucky to have people who can help me with them and a secure income to meet the extra costs. Organisations like Turn to Us have information on grants or other funds you could apply for.
My occupational therapist has been great and I’ve been able to talk to him on the phone to discuss the challenges I’m experiencing keeping safe at home. If you have an urgent requirement for new equipment or interventions at home, contact your GP or Local Authority. You’ll need to be ready to explain the issue you’re facing and any risks associated with it. As disabled people it’s important for us to keep explaining what we need otherwise our requirements can easily be overlooked.
When I last wrote, a major area of concern was how I’d be treated if I needed emergency hospital care. With the help of my support workers I’ve completed a Hospital Passport based on one created by Greater Manchester Coalition of Disabled People (GMCDP) and Liz Crow this can be found here. It felt strange completing this but knowing it’s been done with thought while I’m well has given me peace of mind.
An issue of ongoing concern is the Hospital Visitor Guidance that’s just been brought in. Understandably, hospitals need to restrict access by not allowing people who need treatment to be accompanied. But for people like me with specific physical and communication requirements, the idea of being in hospital without support and advocacy is very scary. The Twitter hashtag: #EqualRighttoLife gives some insight into this issue:
My PAs transfer me, turn me, lift my arms so I can eat, drink, scratch. Lift my head, help me sit. They know how to help me dress, undress, put on my splints. Unless I am constantly asleep (which I could be) I do not imagine any nurse has time to meet my needs.
— Ameena (@ameenab2003) April 20, 2020
For starters I can’t press a call bell. So in emergency I’m abandoned. My needs are too high for the amount of HCA or nurses on a ward. I’ve had situations where staff haven’t known how to move me correctly, hoisting etc. I cannot do basic things like drink without help.
— Wheelescapades (@gemmaorton) April 20, 2020
If you want to keep up to date with this issue and others affecting the health and wellbeing of disabled people, follow Baroness Jane Campbell, journalist Fleur Perry and the Disability News Service.
28 days ago, I’d given up trying to contact Sainsbury’s, my regular supermarket, frustrated by the lack of communication options. In the end I used Fry Law’s template legal letter to write to them, using the only email I could find for, which was for their press team. In my email I explained clearly the difficulties I’d had contacting them and shared my concerns that having only a phone number would exclude many people.
Sainsbury’s responded with a phone call, despite me making it clear that that wasn’t my preferred form of communication! I now have access to online deliveries and I was also able to arrange this for my dad too who’s also at high risk. Sadly, I can see from social media that many people are still having difficulties getting in touch with supermarkets and that they’ve still not provided a non-phone way of reaching them, despite knowing that this is a barrier to many people.
Something else that’s concerning is the ‘one at a time policy’ some supermarkets have adopted. The idea that two adults from the same household cannot shop together may seem sensible on the face of it, but there are lots of reasons why this can be discriminatory, such as not having a car, being pregnant, being disabled, or needing support to shop. While I’m sure some supermarkets will make exceptions, this forces people to explain their personal circumstances to strangers who are unlikely to be trained for this type of work. This policy concerns me a lot, and Mia Mingus’s writing on forced intimacy seems very relevant.
On Thursday, the day before my Access to Work support expired, I at last managed to speak to an advisor, and while it’s not fully sorted yet, I’ve received reassurances that my support will continue. This vital support means I can continue to work, and that’s a massive relief. But there are still issues with Access to Work that remain unresolved.
While most of the problems I raised a month ago have now been solved to some extent, there are more issues almost every week, and the wave of new barriers facing disabled people keeps building – ranging from the lack of BSL interpretation at government briefings, to policies on exercise that don’t allow people to stop and rest which, for some people, will be an essential part of the process.
Some great initiatives are providing support and respite for disabled people affected by all this, from the brilliant ‘Staying Inn’ virtual pub to Heart n Soul’s excellent creative packs, and Lockdown Lab. If there’s something that’s been helping you, please do share it in the comments below.
There’s been a lot of discussion about vulnerability and of course there are some people who are more medically at risk of complications from the virus than others, but a lot of what’s being described as ‘vulnerability’ is actually structural and systemic exclusion. Comedian Frankie Boyle said it best in a recent tweet, “Coverage of Universal Credit talks of “vulnerable” groups, when it would be more appropriate to describe them as “oppressed”. If the thing you are vulnerable to is your own society, you’re oppressed.”
There’s an urgent need to involve disabled and marginalised people with a range of lived and professional expertise in all strategic decision-making. Without this, new barriers will keep emerging because normative experiences and perspectives will continue to be prioritised, creating extra risk and work for many people.
Conversely this is a moment of incredible opportunity when this disruption to how our society operates could be used for reflection, leading to rebuilding without barriers, and to ensuring that the new society emerging from the pandemic is one that better reflects the requirements of people with a variety of bodies, minds and backgrounds.
But in order to use this opportunity we need those in power to listen and act now.