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”.
Then we were told the 12 weeks, but that guidance has been taken and interpreted slightly differently across the country depending on which specific NHS Trust you speak to. I got a second letter towards the end of April from my NHS Trust, UCLH hospitals, saying “we want you to shield for 12 weeks from today”, which takes me to the end of July. If you go on the government website that still says the end of June, and I had some friends from the North of England telling me that they'd had the second letter, but then their doctors said they were just late sending the letter out so it actually means June. There's still this ridiculous discrepancy in what we're being told and no clarification from the government. I appreciate that's because we simply don't know how this is going to pan out. I'd rather they just came out and said, “look, this isn't going to get any better until we have a vaccine”; rather than this halfway house of 12 weeks, but it might be extended to maybe another 12 weeks, and just having no idea what's going on. What it comes down to is just having communication and clarification from the government in this time of crisis at all. On the day that the lockdown changed, when the message changed from 'stay at home' to 'stay alert', not a single word was said on that briefing about shielding. I really was made to feel that it didn't exist that I was living in this parallel universe. It really feels like disabled people have been swept up and locked away. Out of sight, out of mind; for everyone else to get on and do things, and we're just waiting.
Jasper: It's a weird time, and I think definitely a lot of people are feeling like they're left without support, being sidelined to other priorities. What advice would you give to a disabled person in this position who may be worried that they’re being left with no support or not really sure what to do during the situation who maybe doesn't have as much access to resources?
Katie: It will depend so much on your area and what local resources you have, what specifically you need. It’s all good and well getting on the priority slots for online delivery, but if you live on your own and you're only paying for one person's weekly shop, and there’s a minimum spend and delivery charge. If you're not spending that much on a weekly shop and you can't afford to, then that's completely useless to you. You find yourself in a tricky position and you will have to rely on the support of the people around you, whoever that is - volunteer groups or neighbours. I can't offer specifics, but I know that I've seen some disability organisations offer support and practical advice, I'd suggest reaching out to them.
Jasper: We've talked a lot about like the government group of the extremely vulnerable category. How do you feel about this use of the word “vulnerable”? Particularly “extremely clinically vulnerable”, as if you could not be more vulnerable if you tried!
Katie: It's really interesting because I feel like I've had an identity crisis as a result of this, because I genuinely didn't expect to be in this category. I have a condition that affects my muscles and lots of other things but the most immediate thing that I've grappled with in my life has been mobility stuff. I'm very used to the idea that I use a wheelchair, I've got my head around that. It kind of slipped my mind that my lungs are affected - I hadn't had time to think about it! We've never been in a global pandemic before, so I've never had to be so careful. Obviously, there's the flu every year and I get the flu jab, but there hasn't ever been this immediate threat. When the list came out and you were advised to register online through that government form, it was “tick yes if you have any of these conditions” and I didn't because I thought this doesn't apply to me. Then I got a call with my doctor and they were like, you know you're very much on the list because of your lungs and I was like, “oh shit, yeah I completely forgot about that”.
Using this language all the time has forced me to think about it in a way that I hadn't before, in a way that is deeply unpleasant and very uncomfortable because I'm not in control of the language. I'm fully comfortable with talking about my disability, life, experiences and my identity as a disabled person because it's a part of who I am. I'm driving that conversation and choosing the word that I use and speaking with agency. To have this conversation hijacked by the medical model [link], to turn it onto its head and start talking about bodies, people and lives in these medicalised and militarised terms of whether you're vulnerable or not. Of all the words to use: vulnerable! It's so disempowering.
I don't think anything enraged me quite so much as a question from a member of the public to the Prime Minister. The government said that the over 70s should shield and then they said, “we never said that”. So, there was a question to the Prime Minister asking for clarification and he said no, but if you have a medical condition and you're over 70, then you should shield. He followed it up by saying, “but in my experience, over 70 years are usually of rue and robust health and strength”. I was like, “how fucking dare you?!”, not that I want a stamp of approval from the Prime Minister because quite frankly I don't give a shit what he thinks. But this idea that “don't worry about the over 70s they’re tough old birds, they are in rue and robust health, they don’t need to shield or hide away in their bedrooms”. It's this idea that if you have an underlying medical condition that means you're not in rue and robust health, and that makes you’re somehow weak in this very British idea of the word. You're pathetic, you're vulnerable; you're not like the great British soldiers out there fighting. It's a big old whirlpool of horribleness and I hate it!
As we say with the social model, you are not disabled by your impairments but by the built environment. I am disabled because the world was not built for me in my wheelchair; accommodations haven't been put in place, allowing me to live the life that I want. It is nothing to do with my medical condition, and the word vulnerable! I'm in good health. I'm tough, I'm strong. I don't associate with vulnerable at all and yet I’m weirdly having to.
Jasper: You talked about this military language, but I don't think it's new to the disabled community, you know? We're told to be warriors, to be tough, to get on with it; battle through - by members of the public, medical professionals. This idea of having to suddenly “define” as vulnerable. It reminds me of when you're getting ready to go through PIP assessments, and things like that and suddenly you're having to look at yourself through this new lens as weak and all the impairments that you have. It can be quite difficult to associate yourself in that way when you're used to showing your strength, adapting around the issues that you face.
Katie: That is a really good point, and I hadn't really considered that. There's no room for the shades of grey in between, or to be both those things at once. You can have moments of weakness, you don't have to be this strong warrior, defeating everything in your path all the time. It's not a binary, you're not either this weak frail vulnerable person, or you're this strong warrior - I'm neither of those things!
It's interesting that these words are put on us, they are prescribed to us by non-disabled people. In this sense, it forms part of this process where non-disabled people try to process and understand disability. I think people find it hard, so they come up with these narratives that are either you're this strong warrior type or you're frail, rather than seeing the very average life that is beyond that.
Jasper: For those who maybe have medical conditions that aren't on this vulnerable list, they might have to go to the shops and work, that sort of thing. The access needs that they've had in place before with transport are now out of the picture, so there are definitely other struggles for those who also aren't shielded, as it were. Can you tell me a bit about these barriers?
Katie: This is the really troubling thing. As we move into this post-lockdown world, people are going to have to start going back to work now, and that includes disabled people. So many changes have been made to the infrastructure and in particular to the transport system; it's going to pose fresh nightmares for disabled people. For example, if you're blind or visually impaired, socially distancing is incredibly difficult if not impossible for you to do. If you can't see where people are, you can't avoid them. A white cane is usually 125cm; if you tap someone with a white cane you're already too close to them. Unfortunately, non-disabled people love to touch, push, grab, shove, and “help” blind and visually impaired people.
There's been some really concerning reports that ‘Turn Up and Go’ services are no longer running at Transport for London (TfL). There was a report recently whereby a visually impaired passenger tried to use the tube [link]. In “normal times” you turn up at the tube, you ask for assistance and then the TfL member of staff sight guides you down the escalators and onto the train. Someone was refused assistance as TfL staff were told you can't guide visually impaired passengers because you can't go within 2m of them. The official policy is that in those instances TfL must provide alternative transport (usually a taxi) to get that passenger to where they need to go [link]. However, I think we're finding that this isn't being communicated to frontline staff, and this is not happening. If visually impaired passengers are being told to get taxis, how's that going to work when we have entire car-free zones in London? When we talk about anything in terms of transport policy, we need a joined-up approach; transport is everywhere. You don't just go on a train; you walk to the train, get on, and then you may have another mode of transport. If we are suggesting that visually impaired and blind passengers now have to take taxis, we can't then have zones of London that are car-free.
In terms of other impairments, many people with mobility issues have to drive because it is their only mode of transport that is accessible. There are wheelchairs that are simply too big for taxis, so making areas of London car-free in my personal opinion, is not acceptable. What's not acceptable about it is the fact that this policy hasn't been designed in consultation with disabled people. It has been rushed and scrambled together to make this work and it won't work for everyone.
I've seen a report by Frances Ryan talking about disabled people who are essentially being forced into work [link] because their employers won't furlough them and won't give them paid leave because they're not on this extremely vulnerable list. So, if you’re not shielding, you need to get to work because your employer saying you have to get to work, how are you meant to get there? If you can't get on the tube because you're not allowed to be assisted by TfL staff; you can't get in a taxi because you can't go through these Car Free Zones. I mean, it's a complete mess.
Jasper: Very relevantly, you also are involved with the campaign for level boarding [link] which I’d love to hear about. Could you explain what it’s about?
Katie: Yeah, absolutely. The campaign for level boarding is an unofficial coalition of disabled people, including journalists, campaigners, rail users, people from disability organisations and also railway engineers & other industry professionals, coming together to use their combined expertise and knowledge to push for level boarding. It is level boarding specifically not step-free boarding, because the phrase “step-free” has kind of been corrupted and twisted, in the sense that TfL describes some stations as being step-free, but there is a step to get onto the train. We are saying that as long as there is a difference in height between the train and the platform, we will never have full equal & inclusive access because people with various different impairments will always require a person to bring out a manual boarding ramp.
The campaign has multiple strands:
We want to establish a standard for procurement of any new rolling stock, so any new physical trains that have been planned, built and developed - we want them to have a low floor to be at the same height as platforms with extendable gap fillers [link] to match the platform height.
We want a rolling programme of platform improvements to bring all forms up to the UK standard, which is something like 915mm. For example, Merseyrail have bought out their new fleet and all those trains are at this perfect height with the little ramps that fill that gap, but they wouldn't be level because unfortunately there is a huge discrepancy in platform heights at stations across the UK.
So we want the same train height and the same platform height. We'd love to have a goal of 2040 I think to achieve level boarding across the UK network.
Jasper: How do you feel about the fast-tracking of trials for E-scooters?
Katie: I'm not surprised by it. I think we all saw it coming. But e-vehicles, which include e-bikes and e-scooters pose hazards and obstructions for disabled passengers.
I can't tell you the number of times I've been made late because an e-bike has been strewn across the pavement or in front of a drop curb. Drop curbs are quite few and far between in some areas of London, so if you block a drop curb with a tipped over e-bike, I can't go down that way. I have to turn around and come back to where I came from and find whatever next drop curb there is which is often like 10 minutes away, and then have to go along the road for that bit. So they cause a physical obstruction for people with mobility impairments; but in terms of visually impaired and blind folks, it's an absolute danger, it’s a hazard. I’ve heard so many reports of people being physically injured by these things because if they're on the floor, there's no way that you can see them if you don't pick them up with your white cane, you just trip over them, and that is a real problem.
Speaking from my own personal opinion here, I think we have a lot of work to do to make e-scooters in any way safe. I think what it all comes down to is this idea of the streetscape and who it's built for. So many disabled people will relate to feeling like the streets aren't made for us, aren't friendly, or feeling that the streets are hostile. If you view it from a disabled person's point of view, you've got this often narrow, uneven pavement with obstructions: you've got A-board; clutter; bins; e-bikes, you know? All of these things going on the pavement, and then you've got buses that refuse to let you on if they've got a buggy in them, then you go to the tube and that's not accessible either, you go to the train and you get stuck on them too.
It’s a very hostile and difficult to navigate streetscape, and that's what I mean when I say public transport is not inclusive. Whenever you talk about environmental initiatives that involve anything to do with reducing cars or increasing “active modes of transport”, increasing walking and cycling, that's all very well, but you've got to look at the flip side of that which is what about the people who can't? It's all very well saying we need to increase the number of Londoners using active transport, but you can't say that and not think about the people for whom that is not a possibility. It's a really tricky time because huge decisions are being made, which will have a massive impact upon the streetscape and public transport system, but those decisions are being made when disabled people are quite literally invisible, shielded from the world. I worry about what world I will emerge to when I'm finally “released” from house arrest.
Jasper: If you could give one piece of advice or takeaway message on supporting disabled people during this time, what would that be?
Katie: Whatever your situation, it is no doubt really hard at the moment and so I think my only piece of advice would just be to go easy on yourself and give yourself whatever time or rest necessary. This is disproportionately affecting people from marginalised groups, people who have specific access requirements. You don't need to look at these think pieces written by journalists saying, “now's the time to write that novel and if you're not writing three novels by lunchtime, then you are lazy”. I'd just say, do your best to drown all of that noise out and just focus on yourself. If what you've done today is survive, then that is fucking phenomenal.
I think to try and keep some semblance of physical wellbeing, you know, trying to keep up doing exercises, take your meds, eat food, do that stuff. Don't feel any need to like, I don't know, make a podcast or whatever, because you don't need to, this isn’t going to be forever. This is going to end; we will be let out and re-join the world.
You can follow Katie on twitter @KatiePennick