CN: discussing of shielding, government, mentions of ableism (from society/government), wellbeing, occasional swearing
Katie Pennick is a disabled activist who works for Transport for All. The opinions that are raised by Katie is her personal view, and not representative of Transport for All.
Jasper: Great to see you again! So outside of lockdown, you work with Transport for All [link], and your position is Campaigns and Community Coordinator. Can you tell me what your role is and about Transport for All?
Katie: So, Transport for All is a DPO - disabled person's organisation, and we are the only pan-impairment DPO focusing exclusively on transport. Our ethos is that disabled and older people have the right to travel with freedom and independence. As we are pan-impairment, we represent the interests of all different types of impairment: visual impairment; mobility impairment; D/deaf people; neurodiversity, and everything else. We campaign for an inclusive and accessible transport system and streetscape. We offer an information advice line [link], which provides support, education and advocacy for D/deaf and disabled people for help with travelling. We do training so we offer Disability Equality Training. We train, for example, staff on the London Underground; we also work with Uber and Gett, to train customer-facing staff on how best to work disabled passengers. Then the third thing we do is research & campaigns, which is what I work in. We have a membership, we work with our members to get case studies and carry out research, and then we use that research to design data-driven campaigns that promote and uphold our values. I am the Campaign and Community Coordinator, so I work with our members to build community; I act as the conduit between external organisations and our membership base.
Jasper: The pandemic under lockdown has obviously impacted everyone, but particularly for those of us who have been told to shield. Could you tell me a bit about how people who need to shield have been affected during the lockdown?
Katie: Every aspect, every element of life, everything has been impacted by this. I think it's a shame that I get this perception that, especially when in policy briefings and from the government, people are talking about shielding as one sort of unanimous group of people and the assumption that it's somehow easier for disabled people to shield. This assumption that “oh well, they spend all their time indoors anyway; they're always in their house, it doesn't matter, they have no life”. It’s the complete opposite! I think it's really important to recognise that within the shielding category is every different type of person; every single group and identity is represented within this shielding category. It is by no means a single experience.
There are existing responsibilities in terms of organising your care, and any additional responsibilities you might have as a mother, as a partner, as a person, and work responsibilities. People have all the same responsibilities and needs that they now have to juggle in tandem with shielding. Disabled mothers are suddenly finding themselves having to care and home-school their children, and also deal with their own personal care situation. Those are huge things to juggle!
Then people who require the support of personal assistance (PAs)/care workers are now finding their care support decrease. There's more illness, PAs are taking more time off work, or even just this idea that having to shield, you're not meant to see anyone - having to make really difficult decisions of whether to allow PAs to come into your home. I was speaking to someone recently who usually has 20 hours per week of care from PAs, which is usually 1-2 people that do the same shifts every week. During the pandemic, she’s shielding. The agency that provides her PAs have been dealing with staff sicknesses, shortages, and they're now having to send lots of different people in smaller shifts. It's gone down from 4 hours over 5 days to 2.5 hours, and it all has to be one block, so that is 2.5 hours consecutively. Even though she actually needs support kind of in the morning and in the evening! That would mean having two different people, so she's having to make a choice on what she needs support with to reduce the number of people coming in and out of her house. I mean, it's a complete nightmare!
There's also a psychological aspect. Shielding has meant that disabled people have had to change the way they usually do things, and you put so much thought, work and energy into organising everything to be as independent as possible. I think there's a sense a lot of people are feeling that control and agency are being removed. People are finding themselves having to have more support from their partners or parents who they live with; feeling like they are more dependent on other people. That is a really difficult thing to grapple with psychologically.
Plus the fact that not leaving your house for a ridiculously long time has a huge impact on your physical wellbeing. I'm a wheelchair user, I have very limited strength and mobility. Usually, the only form of exercise I do is pushing my wheelchair around when out and about in London going to work, seeing my friends, for a walk etc. Now the biggest distance I've gone is from the bedroom to the kitchen! You can tell because I have e-motion wheels on my wheelchair, they’re electric-assisted. Usually, I have to charge them every night, and now I’m charging them once a week, which just goes to show how little I'm actually moving! My physical strength has just plummeted and it’s just scary. It's this feeling of not having any control of what's happening to me. Plus, this is all in addition to all of the anxieties and worries that most people have in lockdown, which is not being able to see our friends and family or loved ones, not having the life that we used to have. It’s very difficult and the issues faced by disabled people are varied and diverse.
I'm fortunate in the sense that I am in that extremely clinically vulnerable group. I was on that list that got sent to the supermarkets, so I was able to get food. I know people have fallen through the gaps and haven’t been given that support and are struggling to get food. I'm lucky in the sense that I live in a block of flats and know all my neighbours; they're lovely and they've been going to the pharmacy for me to pick up my prescriptions. Not everyone has that luxury either. Basic things like getting food and medicine are suddenly incredibly challenging.
I mean, there are so many aspects of it. What about the disabled people who are living in care homes? That's also a large group of people. We hear about care homes on the news and the way it's been presented just makes it sound like this bizarre alternate reality that isn't in this world at all, we're talking about the pandemic raging in two realms: the pandemic within the community; and the pandemic in care homes. It's as if it's an entirely different world, and there's this assumption that people living in care homes are older people, the elderly, but many disabled people live in care homes for many different reasons. These are young people and it's difficult to see them tarnished with the same brush.
Jasper: Yeah, it's weird to me, not having my one week of exercise going swimming or whatever, which is not an option anymore. So it's very much things that were our routine; things like going to do our physio exercises, going to see our GP is suddenly cut out, and that can feel quite isolating for a lot of people, feeling sidelined. For instance, with a disabled person’s medical care it might be a consultation appointment where we’ve been waiting for 16 weeks, then suddenly cancelled and it's treated as if you’re not important, your care can wait.
Katie: Exactly. Going back to what I said at the beginning, this idea that disabled people and shielding like it must be easy. Absolutely no thought has been given to the intricacies of what that means, telling people to stay inside and not leave their home for any reason, for months indefinitely is such a huge momentous ask. It would have been so much easier if there was any consideration at all into what disabled people are going to need at that time. The fact that disabled people who've been struggling to get food, which is the very first thing that you need - the most basic of necessities, food, medicine - and not even that has been properly planned. Then all the things expanding upon that, as you mentioned, like specialist care. I mean, I had a telephone consultation last week, which was meant to be an inpatient appointment for a procedure and stay overnight. That was all a telephone appointment. There's not much you can do over the phone in terms of x-rays and other tests like that! For a non-disabled person who doesn't have any kind of medical condition, you might be able to go 60 odd days without seeing any doctors for any reason, but for disabled people, we really do need medical care. It's going to have a huge impact on your physical wellbeing, and these are prices that we're going to have to pay further down the line.
Jasper: As disabled people, we want to be as independent as we can. As you said, the situation has made that difficult. What can non-disabled people do to try and support us, but in a way where we have control over it? What can they say or do to make our lives a little bit easier during lockdown?
Katie: That's a really good question. I think that my answer to that question all boils down to listening first and foremost, actively listening and seeking out the voices and perspectives of disabled people in this time rather than 1. presuming that you understand or know what's going on, and 2. thinking to speak for disabled people.
Earlier, I read an article in The Times about how hard it is for disabled people in lockdown written by a non-disabled person! Why would you as a news publication do that?! You want to understand this experience, so ask the person who's experiencing it surely! I mean, I just don't get it. It comes back to the assumption that non-disabled people think they understand disabled people, that they “get” disability. I don't know why. It's similar to how disabled bodies are so often seen as publicly owned, in the sense that people feel that they have the right to touch us, push our wheelchairs - this weird thing that people feel entitled to.
The absolute first thing would just be to stop and listen to disabled people, listen to those perspectives and those voices, and every single individual’s experience is going to be unique and different; specific needs and priorities. If you have a friend, colleague or neighbour who is shielding at the moment and you think “I want to help” - the first thing is to ask how you can help.
In terms of practical support, it would be useful to some disabled people for their neighbours to collect prescriptions from the pharmacy, collect grocery shopping, post letters. Even in these times where people are being told to self-isolate and not leave the house some schemes are still not accepting email forms.
If you are a non-disabled person looking to understand what's going on, a really good person to check out is Dr Frances Ryan, the Guardian columnist, who's just been as ever doing such incredible work reporting on all of the different perspectives of disabled people in the lockdown [link].
Jasper: We've had this huge disparity of what we're being told about regarding the government guidance. Everyone's letter is saying different weeks, and on top of everything else, disabled people are left trying to work out what they're actually supposed to be doing. What kind of issues is this causing? How should the government actually be responding to give information to disabled people?
Katie: Yeah, I mean, it's been an absolute shit show. I'm following the news religiously; I'm very actively involved in the disabled community and I still don't really have an idea of what's going on. Back in the middle of March when the government first came out and said, “we are asking the 1.5 million extremely clinically vulnerable people to shield for 12 weeks”. Then followed this bizarre period where disabled people were looking around going, “right so which am I? which group am I in then?” There’s two groups: there's “vulnerable” and then there's like “super vulnerable”. It took me a while to realise that there was somewhat vulnerable – you know, pay specific attention to the social distancing rules. Then there’s the extremely clinically vulnerable, which were very specific conditions, having to self-isolate and not leave the house at all, for whatever reason. But, life doesn't work like that. It's such an arbitrary decision when it comes down to it, whether you're in this group, or the other group, and especially for those who are kind of on the borderline and not really knowing which group you're in. I've spoken to many people who had to contact their GPs or consultants who have said, “I don't know, you could be somewhere in between, or you might be in the higher group, better play it safe”.