91Èȱ¬

EMMA- So, I was sitting on this packed train, like totally absorbed, scrolling, thinking about my holidays, tired, and I could hear a voice that – you know some people with cerebral palsy you can hear that they have cerebral palsy by the way their voice sounds – and I could hear sounded a youngish guy coming down the carriage saying, ‘Could someone offer me a seat please? Can someone give me a seat please?’. The carriage was packed; nobody was getting up at all. 

NIKKI- Oh, don’t tell me that. 

EMMA- Right? So, I jumped up. I can totally stand on a train, as long as I have the space and stuff, and he said thank you. And then as I was moving forward and opening my cane he was like, ‘Oh my god, you’re a blind person. A blind person gave me a seat, that’s terrible, that’s absolutely terrible’. I was like, ‘No, it’s absolutely fine’. And then I could hear this voice in a kind of monotone saying thank you, thank you. I said, ‘Oh is that your communication aid? It sounds quite interesting’. And he was like, ‘No, no, I’m on the phone’. And it was a woman on speakerphone. It was someone who probably was his mum, or someone who sounded the age of his mum. And then she started ripping into the carriage, the whole carriage. 

NIKKI- On speaker? 

EMMA- On speaker.

NIKKI- Brilliant.

EMMA- Saying, ‘What the heck do you think you’re doing – she didn’t say heck, by the way – not giving this guy a seat?! Another disabled person had to get up. You’re a disgrace! A disgrace!’

NIKKI- Don’t. I love it.

EMMA- And there wasn’t a peep out of anybody in the carriage. Nobody said a word, nobody got up, nothing. But I loved it. I thought it was great. 

NIKKI- No, I completely, I love that that happened. But that’s upsetting that nobody got up. You see I like to live in a world where I think that if I’d wobbled onto the bus, back in the day, that everyone would have stood. But it just doesn’t always happen, does it? 

MUSIC- Theme music. 

NIKKI- We are back and we’re badder than ever. Yes, it’s Access All, the 91Èȱ¬â€™s disability and mental health podcast. I’m Nikki Fox and I’m in London. 

EMMA- And I’m Emma Tracey and I’m in Edinburgh.

NIKKI- Coming up later:

LAURENCE- I wish David narrated all of my life. In my head he does.

NIKKI- That’s comedian Laurence Clarke. He’s going to be telling us about this first TV sitcom.

EMMA- And make sure to subscribe to Access All on 91Èȱ¬ Sounds. 

NIKKI- The national charity, Sense, has revealed it will be awarding grants of £500 to one thousand families to help support them through the mounting energy crisis. It’s a really scary time for a lot of disabled people and their families as costs rise to unprecedented levels, higher still by April next year. And the government is being battered daily in the press for more solutions. We’re going to chat to the CEO of Sense in a moment to find out how we got to this point. But first, let’s say hello to Kelly. Hello Kelly. 

KELLY- Hiya.

NIKKI- Now, Kelly’s a mum of two with MS. And you’re already struggling, aren’t you, Kelly?

KELLY- Yes, really struggling at the moment. 

NIKKI- What do you use your energy on, Kelly? And is it related to having MS?

KELLY- Yes, it is. It is important for me to have the gas on through the winter. But it’s just really frightening at the moment because I don’t know if we’re going to be able to afford to heat the house. It’s a choice between heating or eating at the moment. 

NIKKI- How high have they got, your bills?

KELLY- They’ve trebled in price. I was paying a monthly direct debit, and I just can’t afford to pay that anymore so I’ve had to cancel it.

NIKKI- You’ve had to cancel the direct debit?

KELLY- And I’ve set up a standing order with them to pay as much as I can afford.

NIKKI- And how does that make you feel? Because it’s scary having to cancel a direct debit and do it that way, isn’t it?

KELLY- Yeah. It makes me feel, well I suffer with anxiety as well and depression, and it’s not helping with my MS at all. It’s making all my symptoms worse.

NIKKI- We were saying that they’ve gone up and they’ve trebled, so just give me an idea of the kind of figures that you’ve been paying? 

KELLY- I’ve been paying £240 a month direct debit. And it’s just something that we can’t keep up with at the moment. It’s only my husband working. I’m not working due to my MS. 

NIKKI- Yeah.

KELLY- It’s frightening. Everything is just going up. And the government needs to do much to support, not just the disabled, but everybody that’s struggling. 

NIKKI- And are you in debt now?

KELLY- Yes, unfortunately we are in debt with the gas, electric, a couple of other bills as well. And we just found ourselves in this position and it’s just hard to get out of at the moment. 

NIKKI- Do you see an end in sight? Is there a solution for you and your family?

KELLY- There’s no solution at the moment. I’m hoping the government will do something about it. They need to give more to people that are disabled, and they need to help with the rising costs of energy, fuel, the costs of living for food.

EMMA- Kelly, a household is said to be in fuel poverty if it’s spending more than 10% of its income on energy. Is that you now? Will it be you? 

KELLY- Yes, it is us. We’re spending way too much. I’d say about 50% is going out on energy.

NIKKI- Really?

EMMA- Wow.

KELLY- So, we’ve got some coming in but half of it is going out on energy.

EMMA- And you’ve got kids, don’t you? And how is that affecting the kids, your relationship with the kids, quality of life etc?

KELLY- Well, I would like to have more money to spend with the kids doing things rather than finding the money to pay our bills. 

EMMA- And in terms of food and when the kids are home for the holidays it’s snack, snack, snack, isn’t it. Like they eat you out of house and home I find. How are you managing with food with all of you in the house? 

KELLY- Well, I’m tending to just stick to one meal a day, just to make sure my kids are eating. 

EMMA- Is that affecting your MS, Kelly?

KELLY- It’s making my symptoms much worse: my thinking, it’s making me depressed; it’s making the numbness. Just all the symptoms of MS just get totally worse when you’ve just got anxiety and depression thinking of how are we going to live. 

NIKKI- It’s awful. 

EMMA- Do you know if you’re entitled to any help with your bills?

KELLY- I’m going through Citizens Advice at the moment. They did say to me it was a 7-week wait for them to help me because everybody’s in a struggling position. But they have rung me and they have got the ball rolling, so hopefully they will point me in the right direction of where to go and what to do really.

NIKKI- Thank you so much, Kelly. Just stick with us, Kelly, because we’re now joined by Richard Kramer. Now, Richard is the CEO of the national charity, Sense. Sense supports people with complex disabilities. And the charity has decided to give a £500 grant to some of the people that it supports. Hello Richard, thank you so much for joining us.

RICHARD- Hello there. 

NIKKI- Why has Sense decided to give a £500 grant to some people? 

RICHARD- We’ve been campaigning for government to do more to tackle the cost of living crisis facing disabled people. And families were telling us that they were finding it impossible to pay their energy bills, they were cutting down on essentials, and they were getting into debt. They were also saying we can’t wait until the outcome of the leadership election or when a new support package is announced. So, we decided that we needed to do something positive and practical to put more resources into the hands of disabled people. And that’s why we’ve set up the emergency fund in conjunction with the anti-poverty charity, Turn2Us, who are distributing the grant to disabled people and families across the country. But there’s a gap. We want government to step up to the plate and do more. And at the same time we can’t expect government to make all the difficulties go away. So, there’s an opportunity for charities like us to intervene and provide direct support, but at the same time we don’t want to let the government off the hook. And we’re going to campaign for them to provide more long-term support for disabled people. 

If any politician were to go into a house they would know that disabled people, a lot of people need to have the heating on 24 hours a day because of medical conditions. We know that the washing machine is always on, and disabled people need to have more baths for hygiene reasons for example. But families are now saying actually we’re going to have to leave clothes soiled because we need to save on energy. And families are now telling us that they need to keep their son or daughter in one room as they can’t afford to heat the whole house. People are struggling to run life-saving medical equipment. You can’t stop charging a wheelchair or running an oxygen machine or a ventilator. And I think that’s not understood. I think charities talk about the extra cost of disability, they talk about how people spend a disproportionate amount of money on food and energy, for which prices are rising the greatest, but I think politicians need to be more curious and inquisitive and really understand what it’s like to be disabled, what it’s like for a family carer looking after a disabled son or daughter, facing the pressures they do. People have already cut back; there’s nothing left for people to cut back in existing budgets. 

NIKKI- Richard, do you think other charities should be following your lead and actually supporting the people that they support with some extra money?

RICHARD- I think all charities need to be doing more, and all charities need to be refocusing and telling their story to their supporters about poverty and the impact on the people they support. This isn’t a substitute for a government acting; but there is a responsibility for charities to fill the gap where they can do so.

NIKKI- With cash?

RICHARD- Well, cash grants are one option available. We’ve made the decision that what people want now is money in their hands to pay their bills, to get decent food, to repair equipment. That is the decision Sense has taken. And I hope other charities will do so. 

There are other things that we need to do: we need to talk about the benefits of a social security system. Benefits are a good thing because they enable people to live an independent life, and one with dignity. And if government are serious about helping people they need to restore benefits to a level that people can work on. 

NIKKI- Yes. And Kelly, I can imagine you’re nodding your head here listening to Richard?

KELLY- Yes, I am yes.

NIKKI- Because I know hearing about all these one-off payments it’s quite complex as well. And that is part of the problem, isn’t it, Emma?

EMMA- From 20th September disabled people are going to get £150 payment. And then that’s for rising prices and equipment. And then you’ve got the £650 that disabled people on means tested benefits are getting. Then you’ve got the £400 reduction in fuel bills that we’re all getting. And then you’ve got the £150 council tax rebate that’s already been issued.

NIKKI- Kelly, have you received your cost of living payment yet?

KELLY- Yeah. Well, I’ve received half of it, the £325 of the £650 cost of living. It has helped me in buying school uniforms for my son, because he starts the comprehensive now in September, because uniforms are so expensive to buy.

NIKKI- So, you had to use that money for uniforms rather than for knocking off your energy bills?

KELLY- Yeah.

NIKKI- There is that worry that this support isn’t going to touch the sides. Is there anything else out there? 

EMMA- If you use an oxygen concentrator, if you rely on oxygen most of the time, you actually can get the money back on the electricity that that uses – because Richard did mention oxygen earlier – and if you stick oxygen therapy NHS into your search engine then you’ll get all the numbers to ring. Then if you get yourself on your supplier’s support register you can just get knowledge that there’s going to be a power cut so you can charge stuff up, if you can afford to charge stuff up; you can get help with your meter, kind of reading it or moving it etc. So, maybe it’ll just give you a bit more peace of mind. 

And then if you’re in debt, it’s not disability specific, but suppliers do have charitable trusts and you can apply for grants etc from those. All the big charities do have round ups, but also there will be a transcript of this podcast and lots of the information, well everything I’ve said, is going to be on it. 

NIKKI- Well, we’re going to continue to cover this subject. But I’d like to thank Kelly and Richard so much for joining us today. Thank you both. 

KELLY- Thank you.

RICHARD- Thank you. 

MUSIC- Access All with Nikki Fox.

EMMA- It gets under your skin when too much stuff in your life is unnecessarily, needlessly inaccessible, doesn’t it Nikki?

NIKKI- It really does. You just want to get on with what you want to get on with. In your case you’ve got your kids and family, you’ve got your job, and you want to have a social life and just live your life. And then when those kind of everyday things just stop you from doing just the basics really it is frustrating. 

EMMA- Yeah.

NIKKI- I keep it quiet. I keep it to myself, I just keep quite quiet about it and just sort of, I don’t know, I just sort of try and get over it. But it is difficult. It’s hard. 

EMMA- So, what do you keep to yourself? Do you keep the inaccessibility of things to yourself or do you keep how you feel about it to yourself? 

NIKKI- How I feel about it I think. I just try and remain as positive as I can in life, in this inaccessible world that we live in, Emma Tracey. 

EMMA- Yeah. But it’s good to have a moan every now and again. It’s good to remind people that this is actually happening so that they might know why it’s taking you longer to get back to them, or to fill in that form or whatever. You’re not just being lazy or you’re not putting it off; you’ve actually tried five times and been knocked out of it, or a box has been inaccessible. I tried to do a survey, in work actually, the other day and it was to do with diversity and it had buckets I had to drag different things into, and stuff like that is totally obviously inaccessible with a screen reader. And I was just like, oh. And then there was training, like actual mandatory training and it’s totally video based, the interface was totally inaccessible. And then I started looking at the school apps for school to get the kids lunches, to get the holiday calendar, to see whether the teacher had put up any work for them to do, couldn’t get into that. Like I just felt like breaking something. 

NIKKI- Did you?

EMMA- I did, and having a little cry.

NIKKI- Did you break anything? 

EMMA- No, I didn’t. I pushed down the little cry as well because I didn’t have time. 

NIKKI- No.

EMMA- I had to get up and get ready and get out the door. I just had to get on with it. But it hurts me, it hurts me. 

NIKKI- Oh Emma.

EMMA- But do you have anything like that? 

NIKKI- No, I do. I suppose for me it’s not being able to physically access. I guess I’ve noticed it more because, as you know Emma, I think I might have told you about my fella. 

EMMA- Uh-huh.

NIKKI- And we’ve moved, we’re spending time in our cow bungalow is what we like to call it. It’s basically the disabled’s best friend, the bungalow, next to a farm. 

EMMA- So, that’s why you’re calling it a cow bungalow.

NIKKI- Teenage mutant ninja turtles. So, yeah, we are very sad, my boyfriend and I. But I realised, coming from my family home where I still reside as well, which is all set up for me, I’ve got a lift, my dad’s a builder, he’s done some fancy-pants ramps, I’ve got all the kit that I need, I can pretty much do whatever I need to do with minimum assistance.

EMMA- And if something is really inaccessible you can say, mum.

NIKKI- Yeah, and say, not now, you’re 42, love. But I’ve realised in the cow bungalow there’s not much I can do. And my boyfriend is brilliant; he’s very practical. He’s a gardener but also he can do a lot of things. He’s very handy around the house. And he gets very excited about technology and how technology could potentially help me. And I was like, I need Emma Tracey. Because he asked me the other week, he was like, ‘Why don’t we get those lights where you clap and they turn on?’ And I’m like, ‘What are you talking about, love?’. And then he’s like, ‘What about one of those speaker assistant things where you go, hey, whatever it is, I don’t know, make me a coffee. I’ve no idea what they do, or something to help turn the telly on. Because I did think if I was there on my own I wouldn’t be able to open the door to let anyone in, I wouldn’t be able to get out, I wouldn’t be able to turn the lights, well I might be able to turn the lights on. But there are so many things and it really hit me. Help me Emma. 

EMMA- That thing to turn the lights on that used to be on Tomorrow’s World a lot and stuff, didn’t it. I think it was a piece of kit called the Possum, that was the main thing for disabled people before the smart speaker. Someone can write in if I’m wrong. 

NIKKI- That reminds me of Dame Edna Everage, possums. 

EMMA- Yeah. Maybe she had something with the company, I don’t know. 

NIKKI- I can hit both hands together, but there ain’t much sound coming out, Emma. 

EMMA- And this was sound activated so you did actually need to do a [claps] get the things on. 

NIKKI- Exactly, to do that. I tell you what I could do, I could do this [beeping noise]. That’s my scooter honker.

EMMA- You see that would be clever if they could set that up to activate the lights and curtains, wouldn’t it?

NIKKI- There you go, there’s the future. 

EMMA- So, why do you not want one of these smart speakers? We have them all over our house.

NIKKI- I don’t know. I feel like they’re a little bit intrusive. I don’t like the idea of chatting away and there’s a thing that can…I know they don’t listen. I just don’t know. You see, I don’t know. Am I just being a conspiracy theorist? I don’t know. I just don’t really like the idea of them. 

EMMA- Your phone is already doing that. We have a doorbell where we can open up our phones and see the people at the door. Then you could say to them, oh open it, just come in. Or if it’s someone you know really well, the key is under the ceramic cow. Do you know what I mean? You could just say it. And then you could also set it all up with the lights, and not only can you turn the lights on with it but you can change colour and you can dim them and make yourself a real romantic palace for yourself. 

NIKKI- That’s what I mean, I’m going to that. Do you just get a regular bulb then?

EMMA- No, it’s a smart bulb. Your heating that’s another one that we have set up with the smart speaker. And do you know what I think most about accessibility, and that doesn’t mean that people shouldn’t make things accessible, but it’s when it was accessible and now it’s not, that also really hurts me. 

NIKKI- But actually things have regressed you mean? 

EMMA- Yeah, like if an app gets updated. Last weekend, to the best of my knowledge, and Instagram may come back and tell me I’m wrong, but I had a couple of people test it for me, but with Apple and IOS I couldn’t share other people’s stuff on Instagram suddenly. So, I had been able to and then I couldn’t. And then I am able to again. Every time I download an app I don’t know if it’s going to be accessible. So, I want to download one of these learn to read apps because there are some really good ones for kids now, but actually the anxiety is stopping me from doing it because if I download it and it’s not accessible, and then it would be a really good opportunity for the kids but I wouldn’t be able to manage it and check their progress and stuff like that, it just makes me sad.

NIKKI- Yeah.

EMMA- Because it’s needless. 

NIKKI- Could I hire you as an accessibility consultant for the cow bungalow?

EMMA- Bring my husband round is probably better. 

NIKKI- Ah, there you go. 

EMMA- Because he knows all the stuff. So, we’ll come round and we’ll talk to you and Dave about it. But I wouldn’t rely on it like a person, but it’s a handy thing to have. 

NIKKI- Yeah, okay. Thank you Emma. 

MUSIC- Access All. 

NIKKI- Hello Laurence. 

LAURENCE- Hello. 

NIKKI- How are you? He’s here, Emma.

EMMA- You’re still going then? Fair play.

LAURENCE- Yes, still going. 

NIKKI- Oh you’re a charmer, Emma.

EMMA- I’m only kidding though because he’s just won a BAFTA.

NIKKI- Still going, love. Now, my next guest has a piece of silverware I’d very much like in my bathroom. Laurence Clark is a comedian and a writer with cerebral palsy, and the proud owner of a shiny new BAFTA. Hello.

LAURENCE- Hello. I should say it’s kind of co-owned by the people who run TripleC, and there are about eight of us. So, what we’ve done is we’ve got it on timeshare so everybody has turns to have it. It’s not been my turn yet, but someone told me the other day it’s now got a dent in it. So, we’ve got a disabled BAFTA.

NIKKI- You’ve got a disabled BAFTA. 

EMMA- Did it get a dent in it because of a disability related incident as well?

LAURENCE- I think it might have been on the dance floor later in the evening. 

NIKKI- Now, you mentioned TripleC there. Tell us a little bit about it, Laurence.

LAURENCE- TripleC is an organisation that I chair that recognised that disabled people really needed a voice in the arts and TV and film industry.

EMMA- It’s really important now. The industry people are sort of coming to you now, aren’t they? What are you going to nobble them on next? What are you going to make them change?

NIKKI- Are you going to nobble them on something? 

EMMA- Nobble them; does that even mean what I mean it to mean?

NIKKI- Keep it. It’s brilliant. 

LAURENCE- Ralph & Katie, which is the new spin-off series from The A Word, we’ve had 30 trainees.

EMMA- 30?

LAURENCE- Yes 30, go through a course whereby they look at every aspect of that production and learn how a high-end TV drama is made, as an introduction. 

EMMA- High-end TV drama with two disabled people as the main characters.

NIKKI- Yeah.

LAURENCE- And a lot, I mean a lot, of disabled people work in other areas of that production. It’s really been ground-breaking. 

NIKKI- Amazing. Now, Laurence, Laurence, Laurence, when I knew you I was always introducing you as comedian Laurence Clark. You obviously are a comedian, but you’ve also turned your hand to scriptwriting, haven’t you? 

LAURENCE- Yes, I have. I’ve always wanted to be a screenwriter, going back to as far as I can remember. And I kind of got seduced by stand-up comedy because it was an easy way to get what I was writing heard. 

[Clip] I think it’s often assumed that people with cerebral palsy would just naturally understand one another. They think it’s like French. It’s not. My voice in my head doesn’t sound like what you’re hearing now. No. In my head I sound like an audiobook read by Benedict Cumberbatch. 

Because of lockdown all of the stand-up just went overnight. I finally had time to sit down and write. One reason my writing has taken off is because I’ve been on the 91Èȱ¬â€™s Writersroom, writers access group for the past 18 months. So, the 91Èȱ¬ Writersroom actively looking for disabled, deaf and neuro-divergent writers, people will be able to apply and send in a sample of their writing. 

NIKKI- Amazing, Laurence.

LAURENCE- I applied to get on the course. 

NIKKI- Can you tell us what you’re working on at the moment writing wise, Laurence Clark?

LAURENCE- A sitcom pilot called Perfect, about young disabled people on a Back to Work job scheme that’s training them to shove trolleys around a supermarket car park, and they rebel against that. 

[Clip] What kinds of jobs are realistic for people in your…positions? Shelf stacker. Aha. Data entry. Aha. A hat stand; that wasn’t me. Venture capitalist. You wish. Artist. I said jobs, not hobbies.

So, Perfect won the TriForce UKTV Writerslam at the end of last year. There were four winners, and each of the winners gets a pilot made and broadcast on Dave.

NIKKI- Oh, I like Dave. That’s good channel, Dave. I can’t believe this because I remember talking to you about this around ten odd years ago. It was a time when you and your lovely wife, Adele, you let TV cameras into your home to document the birth of your second son. And the documentary was called, We Won’t Drop the Baby. We’ve got a clip, we’re just going to play it out now. 

[Clip]

DAVID- Laurence and Adele have chosen not to have any prenatal tests which could predict impairments in their unborn child. 

ADELE- We’re in a position where our impairments aren’t hereditary, so we haven’t got hat to think about. 

LAURENCE- I think our biggest worry was that he could have been born a Tory.

ADELE- Your biggest worry at the time was would he have ginger hair. 

LAURENCE- Oh yeah.

NIKKI- Oh Laurence. 

LAURENCE- Those were the days. I wish David narrated all of my life. In my head he does. 

NIKKI- Are you a Doctor Who fan?

LAURENCE- I am. 

EMMA- Can I go back to the documentary clip? Ten years on, Laurence, how do you feel about having done that? 

LAURENCE- I’m glad we did it. I would never, ever, ever do anything like that again. 

EMMA- Why not?

LAURENCE- It was seven months of probably they say the most stressful parts of your life are, what, getting married, having kids…

NIKKI- Moving house.

LAURENCE- …moving. Since we had our house remodelled and Adele was pregnant and we had a camera in our faces three days a week saying, how do you feel about that. 

EMMA- But it did make a difference though. It was definitely for me, who was sort of thinking about potentially going for it with kids at the time, it was useful.

LAURENCE- Going for it.

EMMA- Yeah. It was nice to see other disabled people having a laugh and having a lot of the same conversations and thoughts that we were having as well.

NIKKI- Laurence Clark, you wonder, keep on being brilliant. 

So, now just a reminder, you can catch Laurence’s comedy pilot, Perfect, which is about three young disabled people getting up to all sorts of shenanigans on a Fit for Work scheme. It’s on Dave and it’s on 26th August at 10pm. But don’t worry if you miss it because you can catch up afterwards on demand. 

EMMA- I have seen it already Nikki.

NIKKI- You’ve seen it?

EMMA- I have and I absolutely loved it. There’s a guy with a really funny sounding communication aid and an absolutely filthy sense of humour, and I really love him. It’s a great show. Do check it out. 

NIKKI- You can subscribe to us on 91Èȱ¬ Sounds. And it would be great if you could tell your friends about us too because you never know, they might like some of this random disability chat that me and Emma have every week. What do you reckon, Emma?

EMMA- Tell your mum, tell your teacher, tell the person you always meet on the bus, tell the mountain. 

NIKKI- Thank you for listening and goodbye. 

EMMA- Bye.