On this episode, Nick speaks to Martin about the cost of living crisis and the effect on his life. Martin, who lives in Newcastle, has autism and a visual impairment. As well as finding about his life and his love of singing, we hear how he now struggles to afford basic essentials including food. We also speak to Emma Greenwood, Area Manager for South West England at the Trussell Trust, about food banks; we find out what needs to be done to make sure fewer people need to turn to them for support. A full transcript is available on the Simplecast site. Music: Sun Shine by Cymatix provided by Premiumbeat Sound design and editing by Sally Raper: https://sallyar.wixsite.com/sallyraper
Follow Leonard Cheshire and the Trussell Trust
You can follow Leonard Cheshire on Twitter or Instagram @LeonardCheshire. Find out more at leonardcheshire.org You can follow Trussell Trust on Twitter or Facebook @TrussellTrust or via trusselltrust.org
About the Trussell Trust
The Trussell Trust exists so we can all be free from hunger.
Together, the Trussell Trust has more than 1,300 local food bank centres across the UK, providing practical support for people facing hardship. But emergency food isn’t a long-term solution to hunger.
People need food banks when they don’t have enough money for essentials. It’s not right that anyone needs a food bank to get by. This can be changed this by ensuring everyone has enough income to eat, stay warm and stay dry. That's why the Trussell Trust also work with communities across the UK to change the things that push people to need a food bank
About fuel poverty
Martin refers to fuel poverty. According to the common understanding of fuel poverty, someone is in fuel poverty when they find it extremely difficult to find the money to heat their home.
According to the Office for National Statistics (ONS), someone in fuel poverty finds themselves in the following situation:
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Martin: All I feel is to have enough money to pay my bills and to get the food that I need. You know? I mean that's all I ask. I’ve got a support worker now. So she's helping me deal with things. You know? But even so, it comes down to really not having enough money to survive on.
Emma Greenwood: Conversations like this are really important because we want to say at every opportunity: it’s not okay that people are needing to rely on charitable food aid to feed themselves and their household. And actually, we need as a society to be talking about it.
Nick Bishop: Hello and welcome to The Disability Download, brought to you by pan-disability charity Leonard Cheshire. On this podcast we respond to current topics, share stories and open up conversations about disability.
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Hi everyone and thanks for tuning in. My name is Nick and I’m your guest host for this month’s episode. The cost of living crisis continues to dominate the news headlines and as we approach the winter months, people will need more support. People like Martin, who has autism and a visual impairment, and recent experience of using a food bank. Martin talks to us about the cost of living crisis and its impact on his life. We also speak to Emma Greenwood at the Trussell Trust. The Trussell Trust has a national network of food banks across the UK and it provides emergency food support to people locked in poverty. It works to end the need for food banks in the UK. So, let’s get into the podcast.
So with me today, I've got Martin and Emma Greenwood from the Trussell Trust. Martin, Emma – thank you for joining us.
Martin: That’s ok.
Emma: Great to be with you.
Nick: Thank you. So, Martin. We’ll start with you. Can you briefly tell me a bit about you?
Martin: Well, I’m 56. Getting older by the day and going greyer by the day! I live in Newcastle-upon-Tyne. I’m also visually impaired – partially sighted but my sight isn't brilliant. I mean I’ve got a 47-inch TV and I have to basically be sitting on top of it to see it, so you can tell how bad my sight is. I’m also autistic – which, for people who don't know about autism, is that you see world differently. And there’s sensory things. Like I can't bear loud noises, you know, and like it can sometimes get too much – say if I’m in a shopping centre or whatever, or just in a shop. And because I’m partially sighted as well, I get the extra glare of lights and things like that. And it’s just basically sensory overload that I suffer with.
Nick: And what do you like doing?
Martin: Myself, I'm actually a trained singer.
Nick: Oh! Nice!
Martin: I was trained by a music teacher who was from the Royal Academy of Music in London.
Nick: Fantastic! And so what, what kind of style of songs do you sing?
Martin: I actually sing middle-of-the-road, easy listening. I’m in a choir called Phoenix Choir for people that have experienced hardship or homelessness and things like that. And we do everything. But for me musically, I'm actually making – in the process of doing – a charity album for the Royal National Lifeboat Institution called River of Souls. to remember the loss of life on RMS Titanic, which sank 110 years ago this year. So the money that is raised from the album, which is in the process of being done, is going to the RNLI.
Nick: Fantastic. Well, good luck with that. And, yeah, that seems like a brilliant thing you’re doing. So I look forward to… look forward to hearing more about it. So, many disabled people like yourself have been affected by the cost of living crisis. And can you tell me how it's affected you?
Martin: Yeah. Because now they've changed me over to universal credit, I have to only get paid twice a month. So that means each fortnight, I've got to make food last a fortnight. So I try! The only thing I can really buy… I'd love to buy healthy stuff. I know what I should eat! But to buy the healthy stuff costs twice more than what it would to buy the rubbish stuff, if you know what I mean.
Over the last couple years I have noticed my shopping go up from about £60 a fortnight. The last time I was paid, I spent over a £120 on shopping, including delivery. So that gives you an idea. And that's each fortnight. So I'm losing, out of the money I get [from universal credit], about £100 out of that. And I only get about £300 to survive on for that fortnight. Which means… Yes, I get disability benefits. But I’m having to use the disability benefits to pay other things like gas, electric and things like that. And that disability benefit is supposed to be for me to have a better quality of life, and for me to go out and socialise. And can't I do that.
Nick: Right. So, so… on the point about going out and socialising. What, what did you do before?
Martin: Well, not a lot really.. because again, with my autism, I find it hard to interact and I don't know how to, you know. But I did go out a lot more. I did go out for days out on my own. And go to visit relatives that live in York and all that sort of thing. But now I just can't afford it you know? My quality of life has tended to go downhill, especially since the pandemic. All of us were in the same boat, as it were, through the pandemic. But it seems disabled people are getting forgotten about.
Nick: And you mentioned that you can't afford the healthy
Martin: That’s right!
Nick: Healthy items in the supermarket. What kind of things did you used to buy from the healthy stuff? What are you missing out on that you want to buy? And what are you having to buy instead?
Martin: Well, basically, I tend to go for the cheaper stuff. Like, you know, I'd love to buy fresh meat. You know. Home cooking, casseroles, things like that. And I just can't always afford to do that.
Nick: Yep. The produce that you want to buy… you can't, you can't buy any more.
Martin: No. I have to make a decision. Do I basically buy that and then not have enough money to get other things that crop up? Do you know what I mean? In that fortnight. Like… when you're running a home…. Like personal hygiene products and things like that. I’ve got a cat, you know. I have to think about: Yep, I'm registered with the PDSA. But he still needs like things like, you know, like flea spray and worming. And things like that to make his life, you know, better. And they’re all extra expense, which has to be targeted into my shopping. You know. So one fortnight it could be a little bit more than what I quoted, you know. Because I'm buying a little bit of extra things like his cat litter and things like that. You don't buy every time. But these are the extra expenses, do you know what I mean?
Nick: I do. And are you finding the extra expenses that you have are going up?
Martin: Yes. Yes, I do. The general expenses, you know. I mean, I – because of being visually impaired – I do a lot more washing than everybody else because I tend to spill a lot of food down me. Not because of being lazy or whatever. It’s because sometimes, you know, I can't see where, you know? Or it’s too whatever, you know? And it’s those sort of things. So I’ve noticed detergent, washing powder, go up 10 times fold. Some stuff you can't get from one supermarket. But I've actually changed a lot. Not the cat food because he's fussy, so he'll only have one sort of thing! But for me. For my food, I actually go to one of the discounters now because it's a lot cheaper. And quality is just as good.
Nick: So when you, when you say the ‘discounters’… what do you mean, sorry?
Martin: It's like places like Lidl and Aldi and places like that. Rather than Morrisons, you know, or Sainsbury's or whatever. I tend to use them a lot more now than what I did before. But there are certain things that they don't do. Like, unfortunately, the place I use, they don't do home delivery. Well, you see heavy stuff I can't carry. And I've got no way of transport unless I use a taxi. And I don't have the money for a taxi to… to keep doing that all the time. So I have to use, you know for the heavy stuff and things like that, I have to use somewhere like Tesco or whatever. Being disabled does cost you a lot more. As a visually impaired person until they can get a Knight Industry 2000 – Kit – that used to be on Knight Rider then I don't think I'll be able to drive somehow! That’s my dream is to have a car like Kit! And then I can drive.
Nick: Maybe one day.
Martin: Well, they’ve they got driverless cars now. But I want one that I can communicate with. [Laughs]
Nick: Maybe within our lifetime, Martin.
Martin: Might be! Not in my lifetime. I doubt it! [Laughs] But you never know.
Nick: So, so tell me about your experience of using a food bank and how have the Trussell Trust supported you?
Martin: They've been very, very good. I know that, you know, they are a charity that get no government support, what have you. To be perfectly honest: in an ideal world – which we don’t live in – but in an ideal world, organisations like the Trussell Trust shouldn't [and] wouldn't need to be in existence. Do you know what I mean? Because, you know, they are there to support people like myself, and I’ve found their help invaluable. You know, I really have. Knowing that they are there, knowing that if you really need it, you can turn to it.
Nick: Absolutely. Yep. From your experience, what advice do you have that might help some disabled people who are understandably worried about the cost of living?
Martin: I’m not an expert. But for your energy, most energy providers have to make reasonable adjustments. If you cannot [pay your energy bill] or finding it a struggle, they have to come to a payment arrangement which you can afford. They might say: “Oh. We want £140 a month, including usage”. A lot of people can't afford that. So you say to them: “this is what I can afford, and that's what you're going to get. And that is it”. Or, if you are in severe debt, most companies will now have a fund that you can apply to. You still have to make some sort of contribution that you agree with them. Plus also let's see what the government deliver. Most people should have had the energy cost of living crisis payment. If you haven't then you need to get on to the DWP or whatever to find out where it is. But I don't think this is enough. If you're disabled, you will be getting – allegedly – you don't have to apply for these and you should be getting £150 because of your disability. But I think it should be a lot more than £150, you know, because of: whatever disability you have, it’s to recognise that you have extra – like we were talking about – extra costs. Well they’re not living in the real world. You know: £150 is nothing. I mean, like for me, if I needed to replace a microwave which I have got to do: I I would ideally need a talking microwave which I want to get, but they’re about three to £400 a pop. So they're not cheap! You know, it’s really expensive. So, £150. They say: “Oh. That's to help you replace things that you need.” For a disabled person, whatever their disability, £150 ain't gonna cut it.
Nick: Yeah. Sure. So how are you feeling about the months ahead?
Martin: I'm actually feeling a bit anxious, which doesn't help because I suffer with anxiety anyway. I 'm actually quite scared because already I’m in fuel poverty. And partly this comes down to my autism because, this is really difficult for me to say, but I can't always see the bigger picture. So, sometimes – well, most times – I feel the money that I get should be for me: so of course I know what [bills] I should pay but sometimes it doesn't happen, do you know what I mean? And that is due to my autism, not due to me not wanting to pay. The world is completely different to me to what it might be somebody who hasn't… you know. They’re able to organise their finances, they’re able to discern where money should go and that's why find myself in a conundrum what I’m in now. So with the cost of living crisis now and [in] the future, I know now that I'm not going to be able to make ends meet. And there is no help for people like ourselves. You know, there is no safety net for people that can't. And I'm not the only person, I know, that has this issue. It’s not only people with autism. I can't speak about other people with different disabilities. I can only talk about myself. I know I'm going to find it tough in the next few months. And not only that. Not months. This could go on for years!
Nick: Do you have any hopes for the future of what you want to see, what you want to do?
Martin: If the government put our benefits up in line with inflation, that would help immensely. You know? And I don't understand things about inflation and all this, that and the other. All I know is it affects us. I mean, you know, I am interested in politics, but I’ve got no faith in whoever is in government. Because they haven't had… a lot of them haven't had a lived experience. How do they know [how] the people who are disabled or those on low income suffer? They don’t. It would be beneficial if they spent at least a couple years – still doing their job, don’t get me wrong, but living on the money that a lot of low [income] families have to live on. Then they’d soon understand what it's like.
Nick: That would certainly teach them a few things. Thank you so much, Martin, for all your insight so far. Is there anything else you want to add?
Martin: Just to reiterate, really, that a lot of people who are disabled do have extra costs. And for me, and my background, I still find it hard to go to a food bank. You know? Because my background was I was homeless for many years and therefore every time I go that's taking me back to that time in my life. I remember where I didn't have…. I had no idea what my next meal was coming from. You know. And that's how it feels now, some days. You know, where I don't know where my next meal really is coming from. So, for me, I can never separate my past. D’you know what I mean? It feels to me that I can’t move on.
Nick: What support do you feel you need to be able to help you move on?
Martin: Basically, all I feel is to have enough money to pay my bills and to get the food that I need. You know? I mean that's all I ask. I’ve got a support worker now. So she's helping me deal with things. You know? But even so, it comes down to really not having enough money to survive on
Nick: Yes. Well, thank you so much for your honesty and all of your insights. We really appreciate it. And I hope you can get all the support you need. And I hope people in power listen to this. Emma. Was there anything you want to add?
Emma: I mean, Martin. You’re amazing! And it's been a real privilege to be part of this conversation. And as you say Nick, this is the key. It’s to get as many people hearing that voice. And there’s a real wisdom and insight. And like you say, Martin, what you want is to be able to afford – or what you should rightly be able to do – is to afford to be able to get the food you want. And do things that you want to do. So yeah. Thank you so much.
Nick: So before we finish this conversation… Emma, it would be good to hear from you. Can you tell us a bit more about the work of the Trussell Trust for our listeners at home?
Emma: Yes. Of course. So… Well, firstly, I work as an Area Manager for the Trussell Trust. So that means I get to support food banks across the south west – across Devon Cornwall and a bit of Somerset. And basically The Trussell Trust is a nationwide network of food banks. And together with those food banks, we provide emergency food and support to people that find themselves experiencing crisis or are locked in poverty. And alongside providing a emergency food, we also – as a charity and an organisation – campaign for change. Because like Martin said, when he was so brilliantly describing his experience and his thoughts, is that we don't believe that food banks should exist. And we want to be working towards a future where everyone can afford the essentials and doesn’t need to rely on charity. So we have those two approaches. One is we will do what we do for as long as necessary, and try to do it as well as we possibly can, distributing emergency food. But we also want to support food banks in our network, and use our national voice to campaign for change, and think about some of the things that we would like to see that would lead to that future. Every food bank in our network are independent organisations and are able to respond to their own unique settings in local communities. But they have a common operational approach that they use. So we work with a range of local agencies and support organisations so people are able to be referred into the food bank. And also get, hopefully, the idea is, support – any available support and advice; or signposting to any service that will help address the underlying reason for their need for emergency food.
Nick: That’s very helpful. Thank you. And what relationship does the Trussell Trust see between disability and food banks?
Emma: Well, we do quite a lot of research into why people find themselves needing support from a food bank. And actually, the statistics around the correlation between people with a disability and [people] needing support from a food bank is really quite stark and startling. So our recent research, which was published in the last year in 2021, showed that two in three households that are referred to a food bank included one or more people with a disability. And then there are some more statistics around the effects of mental health and poor mental health – we saw that affecting just over half of households referred to a food bank. So even within those statistics we know that quarter [of households reporting poor mental health] had someone affected by long-term physical condition or illness. And nearly one in five people referred to us reported a physical disability. So we see that people with disabilities are disproportionately represented amongst people that turn to food banks for support
Nick: Right. What change needs to happen in our society so that no one needs to use a foodbank
Emma: Yes. So we talk at the Trussell Trust about three approaches. One is about changing communities – so ensuring that there’s that support network: strong referral pathways; organisations that are linked up and know what each other are doing. To be able as I say to get people linked in to any support that's available at the earliest opportunity. The second is around changing minds. And I think conversations like this are really important because we want to say at every opportunity: it’s not okay that people are needing to rely on charitable food aid to feed themselves and their household. And actually, we need as a society to be talking about it. And thinking about some of those solutions; and listening to the experiences of Martin and others who have had to turn to food banks, and really understand why. And to think about what could have been put in place, or could be put in place, to avoid that. And our third strand is around changing policy. And we talk specifically to national government about some of the policy changes that might lead to less people needing to rely on a food bank.
And our main thing is at the moment: make sure that social security benefits are uprated in line with inflation.. Because as the cost of food and energy and things rise and the benefit levels remain the same, people on benefits are just going to continue to struggle. And we want to make sure that there is a long-term commitment from the government to ensuring that social security is adequate long-term. So they’re our key asks and our key direction as an organisation.
Nick: Yeah. I think Leonard Cheshire would echo all of those calls.
Emma: I think as well, one thing that strikes me: I mean, I don't have any personal lived experience of needing to turn to a food bank for support but I’ve spent quite a lot of time in food banks and a lot of time supporting volunteer teams. It’s the sense that a lot of the systems and things like social security – and other things like that that are set up to support people – aren’t often designed and influenced by people that actually need that support. And this idea that actually we need to really be listening to the voices of people that find themselves struggling.
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Emma: And this sense of really learning from that experience and being able to adapt what we do – to try and do it as well as we can to ensure that services are accessible and are dignifying. So, yeah. That would be my only other thing to add: that we've got a real commitment to just try and do what we do as well as we can, and to ensure that dignity is enhanced at every opportunity.
Nick: Excellent. Thank you.
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Nick: I want to say thanks so much to Martin for sharing his story. It really does demonstrate how the cost of living crisis is affecting people and we really appreciate Martin taking the time to talk to us about his experience. As I say, I really hope people in power at local and national levels listen to these messages. People like Martin, and many others, really need politicians to take note. Thanks to Emma at the Trussell Trust. Both Leonard Cheshire and the Trussell Trust are calling for the government to uprate benefits in line with price inflation, as previously promised. This must be done as soon as possible. For more on the cost of living crisis, head to Leonard Cheshire’s website. You can find out more about Leonard Cheshire and the Trussell Trust in our show notes, including useful links to the work of both charities.
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Nick: We’d love to know what you think. Get in touch by emailing us at disabilitydownload@leonardcheshire.org or contacting us on Twitter or Instagram @LeonardCheshire. And if there’s a guest you really want to hear, reach out and let us know! And don’t forget to like, share and subscribe to the podcast! Thanks for listening. I’m Nick and this has been The Disability Download.
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