大象传媒

This is a full transcript of Shielding Limbo,as first published on 31July 2020 and presented by Simon Minty.<?xml:namespace prefix = "o" ns = "urn:schemas-microsoft-com:office:office" />

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SIMON听- Hello, this is Cabin Fever and I鈥檓 Simon Minty. We started this strand of the Ouch podcast when the pandemic began because disabled people had so much to bring to the conversation that wasn鈥檛 being said anywhere else. As lockdown eases, that unique perspective still feels really valuable. The UK is slowly returning to some version of normality, but many of the 2.2 million people shielding, and other disabled people concerned about what getting COVID-19 would mean for them, are continuing to stay at home. How are they feeling at this stage of the pandemic? What does the future look like? And how on earth have they been filling their time? Kiruna Stamell and Gareth Berliner are shielding and have been up to all sorts of fun during lockdown. They join me from their home in Birmingham. Hello.

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GARETH - Hello.

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KIRUNA - Hello.

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SIMON - So what was life like before for you, before lockdown? And that鈥檚 for those who may not know you from your various television credits.

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KIRUNA - Oh well, we used to leave the flat. We used to go out and shop in person and drink at coffee shops and eat at restaurants and see movies. And I used to perform in the theatre when that existed.

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gareth - And I used to perform in comedy clubs when people could be in a room together.

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Kiruna - So it used to be the version of normal I think that many people experience, although as a disabled woman obviously my normal required adaptations and modifications, which actually has had a bit of an impact on lockdown. So for example I would always do my grocery shopping online anyway because I couldn鈥檛 reach the majority of stuff off the supermarket shelf or comfortably carry it to the car.听

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SIMON - I don鈥檛 know if we mentioned, you are a married couple. I mean, you鈥檙e independent performing and all that stuff, but you are a married couple. When did you decide to go into lockdown and why?

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GARETH - Our last trip outside was in early March. We went to a park in Birmingham, socially distanced from people, keen to get some fresh air, but we began to realise when we just saw how busy the park was that this might be a problem. And on the way home, just talking about it and hearing the news I just said to Kiruna, 鈥淚 think once we get home today we can鈥檛 go out again.鈥�

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kiruna - And Gareth got a really scary phone call from his hospital on top of a couple of letters where it was really presented to him that, 鈥淟ook, you know, you need to be ambulance level ill in order to come in because we will be as much a risk to your health as we might be a help.鈥� So that was a bit scary, to kind of realise that comorbidity - and comorbidity is basically when you鈥檝e got other things that are impacting your health - so when it might come to a clinical decision about resources for example people go, 鈥淥h well, patient A has X, Y and Z conditions on top of this, so let鈥檚 put resources and energy into patient B who doesn鈥檛 have anything else going on other than just COVID-19.鈥� So that sort of gave us both the heebie-jeebies and because Gareth had to shield I had to shield with him because if I didn鈥檛 I鈥檇 be bringing things back into the house.

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GARETH - I have a central line in my chest which I鈥檝e had for about 20 years, it just changes sides, but a couple of times a year I鈥檒l get sepsis and it鈥檚 normally treated very quickly, I get into hospital quickly before it sort of attacks my body too badly and I鈥檒l get strong antibiotics and we sort me out. But at the moment the way COVID works is not dissimilar to the way sepsis affects the immune system, and my hospital were basically saying, 鈥淚f you come in here with an infection there鈥檚 a good chance you aren鈥檛 coming out again.鈥� And that鈥檚 quite how strict it was. Even they said to me if I get the symptoms that would normally make me go straight to the hospital to check my blood and maybe check in they were saying, 鈥淐all 111, get a COVID test first if you can, only come here if you鈥檙e really shaking and like sepsis is taking a grip.鈥� And even if I went into the hospital for an infection in my line, obviously I鈥檇 be at risk of someone working on it and giving me COVID. And if I went in for COVID I鈥檇 then probably have to deal with people who didn鈥檛 know so much about my line and could again give me another infection. So it鈥檚 really scary.

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SIMON - It is terrifying. Just go back a bit. Sepsis, what does that mean? What is that?

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GARETH - Sepsis essentially is when the immune system goes into meltdown and attacks itself in a way. Your body starts crumbling because it has an infection and in order to fight the infection it kind of over produces an immune response and that results slowly in organs beginning to fail. And I鈥檝e had that, like I say, a couple of times a year probably for 20 years, but as long as I get into hospital before my body melts鈥� I mean, I鈥檝e had temperatures of 104, they鈥檝e thought I was going to die before, it鈥檚 just become part and parcel of my life. So I don鈥檛 mean to be nonchalant, it鈥檚 just something that you live with.

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SIMON - The line bit. I know a little bit about that because I know you and you have your line in. Explain what that鈥檚 for?

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gareth - Basically as a result of Crohn鈥檚 Disease I have something called short gut syndrome now, which means I don鈥檛 have very much small bowel, if any at all. I鈥檓 an intestinal failure. And that means that I don鈥檛 really absorb vitamins and minerals from the food I eat. So I connect to a prescribed bag of nutritional fluid for my calories and for my vitamins and minerals. Strangely enough, before the pandemic emergency I was already involved in a national emergency that was affecting people like myself, so not only am I still dealing with the pandemic I鈥檓 dealing with a second emergency on top of that that actually means I鈥檓 currently not on appropriate nutritional material for my body. It works but it鈥檚 not as鈥� It鈥檚 like I鈥檓 on baloney when I should be on sirloin steak.

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kiruna - Yeah, so I鈥檒l just jump in and explain that, because I鈥檝e got used to summarising this one. The private company that was providing the total parenteral nutrition, the fluid that goes into Gareth鈥檚 chest, normally gets a prescription where the fluid mix is very specific for Gareth鈥檚 metabolism and nutritional needs. They created a very quick way of processing those bags which turned out to be unsafe and as a result they can鈥檛 keep up with the manufacturing need. So a whole group of people on total parenteral nutrition have been put on generic off the shelf bags, which historically were only ever used for when you were going away on holiday so couldn鈥檛 travel with your specific stuff. That is in theory only safe to be on for six weeks because it鈥檚 not made for your specific body chemistry. However, a lot of patients have now been on that for over six months. That comes with the added difficulty of you require blood tests to make sure the generic stuff is okay for you. Blood tests mean going out to your GP, it means a risk at the moment of being exposed to COVID. So it鈥檚 basically a cluster, inappropriate word, of stuff.

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SIMON - I can only sort of get my head round how complex that must be for you and how difficult. Obviously I don鈥檛 have both parties so I can鈥檛 sort of bounce it off and hear the other side, but鈥� Oh, and also I should say, Kiruna, you have a very rare form of dwarfism, so you鈥檙e both allowed to be on 大象传媒 Ouch. You proper qualify.

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KIRUNA - Yes.

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GARETH - Yeah, we qualify.

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SIMON - Kiruna鈥檚 rare form means she can tap dance, because I don鈥檛 know anyone else who can tap dance like that. It鈥檚 immense, it鈥檚 complex, and both of you are very kind of calm about it, but it鈥檚 a lot. Dare I ask you both, have you been out yet?

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KIRUNA - No, not really. I think because we鈥檙e shielding we actually still aren鈥檛 able to technically go out until 1st August. The rules that have changed for us that we are able to meet up to six people outdoors. Oh, that鈥檚 it actually, I think that鈥檚 really the only thing that鈥檚 changed.

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SIMON - Do you have outside space? Would you even go to a park or something like that?

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GARETH - We鈥檝e got a courtyard outside our window because we鈥檙e on the ground floor and we use the courtyard for yard time.

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SIMON - But I mean, does it feel like prison? Is that what you鈥檙e saying? That is your little bit of fresh air?

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gareth - Yes, I think so. I think to a degree. I mean, we鈥檝e gone as far as the post box a minute away and the chemist five minutes away, but that鈥檚 about the extent of our travel. And the chemist will actually serve us on the footpath so there鈥檚 no going indoors at all, it鈥檚 all done sort of in an outdoor environment because that鈥檚 less risky for us.

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SIMON - So, seeing as you can meet people outdoors are you actually doing that?

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KIRUNA - Yeah, we鈥檝e had one or two friends come and meet us in our courtyard but we keep a social distance from them. And actually I would say we鈥檝e become a little bit more wary of that because the rules have relaxed. The friends we鈥檇 love to meet are actually coming into contact with more and more people in circumstances that are a little bit more risky. So Gareth and I are thinking of actually winding that back, weirdly, because for them the rules are much more relaxed, but that actually kind of means that for us we could be exposed to a greater risk. I mean, what do you think, G?

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GARETH - I鈥檝e got a friend who鈥檚 visited me, he鈥檚 not wearing a mask when he visits me, and to be honest I鈥檝e gone into the courtyard and met him without a mask on. But I also think, even though we鈥檙e keeping a social distance, that the people that aren鈥檛 at risk, whilst there are people that are wearing a mask, there are still people that feel invulnerable. You can鈥檛 see this thing, they鈥檙e not aware that they might be carrying it, and I鈥檓 starting to get worried that as we, the shielders, are meant to go back outside our behaviour, which is protectionist to avoid people and to be concerned about someone behind you without a mask etc, will make us look like, well those guys are being a bit extreme. You know, I feel like a lot of people are paying lip service to doing certain things we鈥檙e meant to do.

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SIMON - You鈥檒l be allowed to go out a bit more. Are you going to shield to that same extent then or more relaxed?

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GARETH - I think at the moment our shielding is not going to change massively, certainly the rules don鈥檛 change massively, and I refuse to believe that from July 31st to 1st August something amazing happens in the world that I鈥檓 suddenly safer. I鈥檓 certainly not allowed indoors still in a shop, although the government says as a shielder I can now go to work if it鈥檚 a COVID safe environment, but if it isn鈥檛 I shouldn鈥檛 go to work. And since I work in comedy or acting, all of which are in a multitude of places and venues, I cannot guarantee my safety.

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KIRUNA - So Gareth got a letter that was explaining the changes that will come in force on 1st August, and actually it really is lip service, because when you look at the details of the letter they鈥檙e saying, 鈥淥h, you no longer need to shield,鈥� but the description of what Gareth is still technically not encouraged to do is really close to shielding but without calling it shielding. So it鈥檚 kind of like we actually get dropped in it without any support from 1st August, rather than there being any radical change. So, for example, you know, the letter says avoid indoor based activities, even though shielding is, quote, unquote, 鈥榦ver鈥� on 1st August. So we鈥檙e really still in limbo.

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SIMON - In your ideal world what would you want to happen? What should be the plan?

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GARETH - In an ideal world at the moment, for me, masks would have to be mandatory in public, full stop. None of this wishy-washy in a shop put your mask on, outside a shop鈥� You know, it鈥檚 so insanely ridiculous that someone walking into a shop is wearing their mask and then as they walk past me and I鈥檓 on my way in they take their mask off and breathe out while they鈥檙e walking past me. Like it makes no sense.

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SIMON - Is there a date? When are you going to stop shielding?

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GARETH - When you tell me I鈥檓 safe.

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KIRUNA - I think it鈥檒l be when the hospital that manages Gareth鈥檚 condition tells Gareth he鈥檚 safe, because see, there鈥檚 also a big disconnect between what the government鈥檚 telling us and what our NHS advisors are actually saying.听

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GARETH - So even where at the moment I possibly need a test on a part of my health that鈥檚 quite important they would rather I still don鈥檛 go in. So I鈥檓 currently trying antibiotics at home in the hope that I don鈥檛 have the issue I may have because it would require me to go to hospital for a check. And if they鈥檙e still that determined that they鈥檇 rather I stay at home for another week and try something out that may or may not help that鈥檚 an indication that it鈥檚 still not a safe enough environment for me to go there.

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SIMON - That kind of makes sense. In your individual circumstances you鈥檙e going to wait till those professionals, the health professionals, say yes.

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GARETH - At least until I can come and go to have a normal appointment for my health, yeah.

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SIMON - I鈥檓 going to bring it back a little bit to love, and maybe, Gareth, you might need to just stop listening. Kiruna鈥�

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KIRUNA - Yeah?

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SIMON - You have done a big thing because you鈥檝e said right, I鈥檓 staying in with my husband but that鈥檚 part of marriage, in sickness and in health and so on. How has that been for you? Do you ever get a little moment going, oh, I really want to go out?

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KIRUNA - Well, firstly let me say, Simon, thank you for recognising my awesomeness, I don鈥檛 think it gets recognised a lot in society. In fact, you鈥檙e the first person to congratulate me on this huge sacrifice that I have made for love and my husband. I have maybe one or two brief moments where there鈥檚 a bit of it that I just wanted to go oh, look let鈥檚 just, you know, oh forget it, why can鈥檛 I just go out into the world? And actually those were fleeting thoughts, and they were only in response really I think to the lockdown being lifted and feeling a little bit resentful of everybody that is out there squandering their good health and freedom to do so with no care for all the shielders who are invisible and have been locked in their homes and can鈥檛 be seen and have very little financial support and have been forgotten. So yeah, to be honest it hasn鈥檛 felt like a big sacrifice at all, you know, I鈥檓 doing it for somebody that I love and he鈥檚 good company for me.

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SIMON - The flip side of that same question, Gareth. I know some times where people have stopped doing things because of me and my disability, and that鈥檚 a tough place to be because you want them to go and do it but then it means you鈥檙e going to be left behind. How have you negotiated that in your head, knowing that she鈥檚 staying in?

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GARETH - You鈥檒l make me blub if I talk too much, because I absolutely love my wife and what she鈥檚 doing for me and supporting me is amazing. I have to stop myself getting upset by it all. We鈥檙e keeping each other mentally strong, we鈥檙e supporting one another. I feel like I鈥檓 part of a really unique team.

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SIMON - Jumping across to your creative lives and what you do. So, Gareth, just jump in, that comedy bit, and it may be the same for you, Kiruna, that loss of the audience, the loss of the energy that you get. I know, Kiruna, you just finished a very long run in the West End as well. So what鈥檚 that been like, Gareth, not having the audience to respond to your jokes?

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GARETH - Really tough, to be honest. The first few weeks in lockdown I was broadcasting live on Facebook every day, just chatting to people, not trying to be funny but just trying to find a way to deal with what had happened mentally. And I had quite a few people tuning in after a while. And then I began to feel like I couldn鈥檛 talk about my fears and my worries because these people wanted to be entertained and wanted to laugh. And after a while I realised, actually this is pretty unhealthy because I鈥檓 now only going online live for the people and to not upset them so that they have company. And I had to think about myself. So I actually stopped doing that. I鈥檝e been doing lots of different projects online with various comedians and the odd online show, but I mean my earnings from online comedy literally probably total about 20 quid across four or five gigs. It鈥檚 pretty tough.

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simon - And Kiruna, the loss of the audience and the energy that you get from that?

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KIRUNA - Well, I mean the timing for me was interesting because I had just finished the run on the West End. Weirdly though, the production had 18 actors in it and people had started getting ill in sort of the last month of the production and we lost three parents of cast members based in London in February. So I thought it was a bit dodgy what was kind of happening at the time, but you just kind of put it down to oh, it鈥檚 winter, it鈥檚 flu. So who knows what was beneath that? But statistically that was a bit weird. So the loss of the audience, it鈥檚 been a real pity, I鈥檝e lost some work that was up and coming that I was really looking forward to, but actually as a silver lining from lockdown, being able to be in the house and bored and have to kind of be with myself has actually also been a little bit of a growth period. So it鈥檚 a funny mix.

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SIMON - What have you been doing in terms of creative output in lockdown?

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gareth - We worked on a production in 2014 that was called 鈥楶irate and Parrot鈥�. It was a really lovely theatre show about the world鈥檚 largest parrot and the world鈥檚 smallest pirate. You can probably work out who played what role. I obviously was the parrot. And we really enjoyed it. So we have been doing some creative things in lockdown. I think what happened was we hit week nine of lockdown and mentally the stress hit home, so I think we were being unnecessarily moody with each other. Nothing to do with us, just to do with the situation.

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KIRUNA - Yes, just feeling generally crabby and taking it out on somebody. But when you go, 鈥淲ell, let鈥檚 analyse this,鈥� you鈥檙e like, oh my gosh, there is nothing to analyse, there actually is no point of contention, we鈥檝e all just got the pups.

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GARETH - So we decided, thinking back to 鈥楶irate and Parrot鈥� that maybe it was something we could make again in lockdown and we contacted the original theatre makers, Red Earth Theatre, and just asked them if they might be interested and 鈥楶irate and Parrot鈥� has now gone live on YouTube and we will continue to make episodes, hopefully till at least September, and we hope that something might happen with it.

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KIRUNA - Yeah, reinvigorate the project, go for a bigger theatre production, which we would love to employ disabled and non-disabled actors, so create a really nice, large cast and make a family friendly show.

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gareth - Have a bigger cast.

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KIRUNA - And I think that actually having been stuck indoors, one, it meant Red Earth Theatre Company weren鈥檛 able to be making theatre at the moment so they were available to work with us on a weekly basis. Gareth鈥檚 cousin, Johnny, was available to do the music for us, and so was Gareth鈥檚 brother to do the theme tune. So in a strange way everybody being sitting ducks at the moment meant that we were actually able to get the project off the ground and happening. And actually, when we went back to 2014, yes we loved the show, but we were small scale touring, and being two disabled performers, small scale touring where you鈥檙e setting up, packing down, driving, walking, washing, on top of acting and creating was actually incredibly exhausting. And as much as I enjoyed the show the logistics of small scale touring was just physically doing us both in. And actually Gareth got a line infection in one of the weeks that we were touring, so that then becomes really dangerous because he鈥檚 actually managing his health and we鈥檙e going right, got to do a show and then got to get you back to hospital. So creating something in our kitchen that we could get out over the internet to an audience who were also stuck at home鈥�

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GARETH - And actually it鈥檚 been fun. You know, I mean, our home at the moment technically looks like a studio, there鈥檚 a lighting rig over my shoulder here and it鈥檚 lovely that we have the space, it鈥檚 lovely that we鈥檙e able to put it together at home and it looks good.

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KIRUNA - We鈥檝e created some additional materials to help parents talk to their kids and answer any questions that come up. Gareth and I are shielding because of his condition and we talk about it, and so we鈥檙e working in our kitchen, we鈥檙e shooting it on our mobile phone, this is what we鈥檙e working with, and that鈥檚 actually part of the charm I think because I鈥檓 hoping that children watching go, 鈥淲ow, what a great couple of characters, let鈥檚 make up our own stories with them,鈥� and use their own creativity. So that鈥檚 actually kind of part of the show. A story based episode every fortnight will come out because that鈥檚 more feasible with the writing and the music and the additional production element, and then on the alternate weeks Gareth and I are going to do a making episode or an educational episode where for example, if you actually see episode one there鈥檚 a lovely shot of an origami pirate ship filmed through a toilet roll, which is us seeing a pirate ship in the distance through the telescope. So our first make will be origami pirate ships and telescopes, so the kids will actually鈥� each element will relate to an episode and we鈥檒l make that with them.

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SIMON - Will you be tackling big issues? Will you be seeing what鈥檚 going on in the news and putting them in?

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GARETH - It鈥檚 interesting that you should say that, because we have already鈥� episode five has been shot and without revealing too much we are talking about Pirate wanting to lay claim to an island and me pointing out to Pirate, 鈥淵ou can鈥檛 own this island, this island owns this island and we have to look after it together.鈥� So there鈥檚 kind of a little eco and immigration message etc, and indigenous culture being taken over and slaughtered by various people who discovered countries.

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KIRUNA - Manners, friendships, relationships, what are healthy relationships, all of these are actually explored in the stories, I mean, even the fact in episode one, Pirate was horrible to poor Polly, the parakeet. You know, we鈥檝e got ideas that there鈥檒l be episodes that tackle that relationship. So it will explore actually I think sometimes things grownups need to revisit, like what is a good friendship, that sort of thing. And you鈥檝e got the beautiful innocence and smarts of Parrot combined with the naughty fallibility of Pirate who just wants gold.

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simon - As well as 鈥楶irate and Parrot鈥� your social media output, whether that鈥檚 TikTok, whether that鈥檚 Instagram, or maybe doubling up, it鈥檚 been phenomenal. I mean, maybe that鈥檚 why you got ratty with each other because you鈥檙e doing so much, but how did you keep that energy up? How did you keep releasing stuff out? How do you do that?

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GARETH - It鈥檚 actually getting bigger because we have just started a 鈥楶irate and Parrot鈥� TikTok as well as our own TikToks which we鈥檝e been doing. I think it鈥檚 just all of these things have been great distractions because as disabled people we鈥檝e been very caught up and very worried by governmental strategy and lines and how the public are dealing with the pandemic or choosing to deal with it. And I think being able to sink ourselves creatively into TikTok or Instagram or pushing 鈥楶irate and Parrot鈥� is just a lovely escape, a creative escape. And I think that鈥檚 really helped us mentally to just focus on those things and not spend the whole day watching the news.

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KIRUNA - And TikTok I find weirdly kind of liberating, because everyone鈥檚 recycling everybody else鈥檚 material and reinterpreting it for themselves and then putting it out. I find it quite an equalising platform, so for me as a woman with dwarfism you鈥檙e seeing me doing the dance routine that somebody else has just done. And so there鈥檚 a sameness as well as an individuality that the platform explores. We鈥檝e had a little bit of bullying, as you know, Simon, the kind of rubbish that might get thrown at us, where I鈥檝e actually鈥� Like, we had one that was horrible that we found the other day that refers to me with the M word and he鈥檚 also actually a bit racist towards the co-star in the footage that they were laughing at. And Gareth and I were like, well how do we respond to that, and I went, let鈥檚 duet with it. So we鈥檝e done a duet with this man being cruel and ridiculing me鈥�

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GARETH - Which means he鈥檒l see it.

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KIRUNA - Silently next to the footage of him being nasty putting up banners that are written about #no to fascism call it out when you see it. And that feels like such a good response, to be able to actually go look guys, ableism鈥檚 out there, let鈥檚 get rid of it.

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GARETH - Also, I have to say, TikTok as a platform, having worked across all the various social medias, what I have seen is far more representation from disabled people putting themselves on TikTok, I think because there鈥檚 a very easy ability to report someone who鈥檚 trolling and delete their posts. And there鈥檚 a lot of love out there. I do feel like TikTok at the moment is a much more open and loving platform. You鈥檙e always going to get haters, haters are going to hate, but it鈥檚 really supportive of having a go at the bullies back, not allowing that kind of practice to happen and ultimately you just block the person, you never see them again.

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SIMON - I have one final question for you. What will you take from this period that you鈥檝e learnt or discovered that you鈥檙e going to carry on doing post lockdown?

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GARETH - Do you know what? I would say for me it鈥檚 when Kiruna asks me to do something I鈥檝e learnt just to do it. But that鈥檚 been my big take home.

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SIMON - That鈥檚 good.

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GARETH - It鈥檚 like if you want a healthy relationship and a healthy marriage, if your wife asks you to do something just get it done, then you don鈥檛 get asked again and life is much simpler.

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kiruna - He鈥檚 meaning like tidying up and those sorts of requests.

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SIMON - And what have you learnt, Kiruna, that you鈥檙e going to stick with?

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KIRUNA - I鈥檝e learnt how important being still is and allowing yourself to feel a little bit bored, because actually really great stuff can come from that because being stuck in the house there have been moments that I鈥檝e felt bored in a way that I haven鈥檛 felt since I was a little child. And that鈥檚 kind of where the play and the creative ideas come from, I think.

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GARETH - Yours was much deeper than mine.

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SIMON - That was a joy. It鈥檚 great to speak to Gareth and Kiruna and see how they鈥檙e getting on, and even under shielding they鈥檙e still doing some amazing work. If you want to get in contact with us you can email us, it鈥檚 ouch@bbc.co.uk. And you can find us on Facebook and Twitter and that鈥檚 @bbcouch. You can also find us on the 大象传媒 Sounds app.

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