What was in the budget for disabled people?

13th March 2024

bbc.co.uk/accessall
Access All – episode 95
Presented by Emma Tracey 

EMMA-           Hello, Alex Taylor.

ALEX-             Hi, there. How are you?

EMMA-           I’m good. I came and grabbed you, didn’t I?

ALEX-             I know.

EMMA-           Because I really wanted to gossip about the story that’s been all over  the internet about Madonna this weekend. And you are a wheelchair user and you’re a BBC culture reporter, so you’re my perfect person for this conversation.

ALEX-             Well, I am apparently, yes.

EMMA-           So, what happened?

ALEX-             Yeah, well, so the gig in that gig she actually saw an audience member and said, “Get up and dance”. And I turned out that they were actually in a wheelchair.

EMMA-           Ouch.

ALEX-             So, then she had to hastily apologise. And then yes, she went online and then everyone went mad.

EMMA-           Well, yes, because somebody was filming it, weren’t they?

ALEX-             Exactly.

EMMA-           So, here’s how it played out:

[Clip]

MADONNA-    [Cheers and applause] Dance with me. Why are you sitting down over there? What are you doing sitting down? Oh, okay. Politically incorrect. Sorry about that. I’m glad you’re here.

[End of clip]

EMMA-           Oh my goodness. That’s really cringey, isn’t it?

ALEX-             Yeah, not ideal.

EMMA-           So, what have people been saying about it then?

ALEX-             Well, I mean, everyone gets angry at this point after anything nowadays. But they’re saying it’s ableist. If you’re in a chair at a gig it’s often hard to get there anyway, so having that on top is your worst nightmare.

EMMA-           So, people say it’s ableist, so discriminatory towards disabled people.

ALEX-             Yes.

EMMA-           And that actually we go through access lines, there’s so much work to get to a gig, and then being called out for sitting down, especially if, like, you’re a new wheelchair user or something, that must be quite a…people don’t want that to happen, do they? But what’s your take on it? Because I don’t think you’re as angry as some disabled people online, are you?

ALEX-             I’m not angry [laughs]. I just think it was obviously meant in a light-hearted way to get everyone up and going and dancing at her gig. I mean, that’s her job on stage is to get everyone in the mood. I just think it was obviously unintended, and you have to look at what her aim was with that; it wasn’t to offend. And she did apologise afterwards, you know, as soon as it was obvious. And I just think you have to let her be on that one.

EMMA-           I think what you’re saying to me, Alex, is relax, chill out, it’s not big deal.

ALEX-             Yes, essentially I am. Essentially I am saying that.

EMMA-           [Laughs] all right, let’s say this together, one, two, three, on with the show!

MUSIC-           Theme music.

EMMA-           Hello, this is Access All, the BBC’s weekly podcast about disability and mental health news and stories; and boy, do we have plenty of those for you this week. I’m Emma Tracey. And on this episode I’m going to talk to Henry Fraser. He was a promising rugby player and a gym enthusiast before he became paralysed from the shoulders down in an accident whilst on holiday when he was 17. Since then he’s taught himself how to paint using his mouth and an accessible paintbrush on a stick. And he’s become very famous doing that, and it’s a great conversation, so looking forward to you hearing that later on.

                       We’re also going to look at last Wednesday’s budget and the £105 million the Chancellor Jeremy Hunt has promised to build 15 special schools in the next four years.

                       While I have you here can I ask you to subscribe to us on BBC Sounds or wherever you get your podcast. Just hit that little button and I will come down onto your device every week and talk to you about disability. Lucky you. You can also get in touch with us on email [email protected].

                       Last Wednesday the government announced its spending intentions for the next few months. Chancellor Jeremy Hunt laid out his plans to cut national insurance and to tackle inflation. But what is in the budget for disabled people? Here to help me answer this question is Fazilet Hadi from Disability Rights UK. Fazilet, you’re very welcome.

FAZILET-        Thank you, Emma. Lovely to be with you.

EMMA-           Well, you’ve been on before; we know you know your onions about this sort of thing. Now, your organisation, Disability Rights UK, before the budget you released a strongly worded statement, and that was calling for the government to improve living standards for disabled people. Do you think the Chancellor got the message?

FAZILET-        Absolutely not. I’m saddened to say that I think the government and Disability Rights UK are living in very different universes, and I think the government clearly don’t think there’s a problem with deepening poverty. And if they do think there’s a problem there’s nothing they’re going to do about it any time soon. And instead we saw a budget that was about some national insurance cuts that will benefit high earners more than they’ll benefit low earners; keeping to the current tax thresholds, which will again penalise the lowest earners; and we saw very, very little for anyone who’s really struggling to eat or heat their home.

EMMA-           So, what did we see for disabled people in this budget?

FAZILET-        [Laughs] that’s going to be a pretty short answer. We saw an extension to something called The Household Support Fund, which is a kind of safety net. You would have thought the benefit system was a safety net, but as we all know the level of benefits isn’t enough to meet essential expenditure. So, the government has been giving local authorities a pot of money that they can use their discretion to give out. And so we saw that fund of extra money to local authorities being extended for six months, which is so deeply depressing because it’s going to end as winter starts and people will be left with nowhere to go for things that they are desperate for. And we would have hoped for a one-year extension so that people got support through next winter. We saw some capital being given to a programme to build special schools. That programme has been going on for quite some time, and they’ve put another £105 million in, which is probably not very much money.

EMMA-           What were you hoping that the government would announce in this budget that they haven’t?

FAZILET-        Okay, well we were hoping for them to at least review benefit levels so that people could eat, heat their homes, buy medication and live with a decent quality of life. In the event of them not doing that we were hoping they’d continue with cost of living payments to help people through next winter. We were hoping that they would actually find some money to support all poor people, but disabled people in poverty in particular around energy bills, because a lot of disabled people have higher use because of needing to keep homes at a constant temperature for health reasons, or needing to charge mobility or health related equipment. None of that was there.

                       And the other thing we would have really hoped for is some injection into the public services that are really floundering and on their knees, like health, like social care, like educational support to disabled children. We can see local authorities going bankrupt, we can see the pressures on their budgets, and it’s going to be disabled people who are at the hard edge of that bankruptcy, and we’ll be the ones losing out on services.

EMMA-           Well, the Treasury did tell us that the government is absolutely committed to improving the everyday experience of people with disabilities. Fazilet Hadi, thank you so much for joining me.

FAZILET-        Thanks, Emma.

EMMA-           And one issue which Fazilet did mention, but which we want to do a bit more of a deep dive on, is provision for children with SEND, special educational needs and disabilities. Listen to this clip from Jeremy Hunt’s budget:

[Clip]

JEREMY-        Special education need provision can be excellent when outsourced to independent sector schools, but also expensive. So, we’ll invest £105 million over the next four years to build 15 new special free schools [hear-hears] to create additional high-quality places and increase choice for parents.

[End of clip]

EMMA-           Increase choice for parents. Well, one parent who’s been listening to all that and who’s been on the SEND journey is Hayley Harding. Hello Hayley.

HAYLEY-        Hi.

EMMA-           How are you doing?

HAYLEY-        I’m good thank you. How are you?

EMMA-           I’m well, thank you. You were listening to that clip, and you’ve had a bit of a journey to find the right school for your son, Matthew, haven’t you?

HAYLEY-        Yeah, that’s right. His journey, like you say it is, started back in 2019 when he was refused support. He’s autistic and now we know he’s got ADHD and he’s dyspraxic as well. And he was so weak at the time, physically so weak that he couldn’t pick up a pencil, he needed physiotherapy to walk, and despite that the council turned him down for an assessment. So, that’s when our journey started at a time when it was so clear he needed help, and yet he was refused.

EMMA-           So, you applied to your local authority for an assessment to see if he could get an educational health support plan?

HAYLEY-        Yes. Or even if he needed one. We didn’t really know, to be honest. We thought he did, but we wanted the experts to come in and look at him and assess him, literally, as it’s called. And when they said no we kind of just thought, well hang on a minute, what’s the reaction, what are we supposed to do. And I remember talking to the caseworker and I said, “Look, he goes into preschool now and he’s physically, you can see, he’s scared, and you’re telling us he has to because you’ve got to see him in that setting. And yet you’re saying you now want to take him from a setting which has a much higher ratio of staff, because the kids were obviously younger, to one where it’s more intense, more overwhelming and he’s going to be frightened every day”. And the response was, “Well, just see how he gets on”.

EMMA-           We’ve been doing a lot on this subject on Access All and on 5 Live recently, and we’ve seen that before where people have been told to go and try mainstream before going to a specialist school. But you knew he needed specialist school. And did you find somewhere for him?

HAYLEY-        Eventually, yes. Ten months down the line. And it was in the January that we first got turned down; it wasn’t till the following October that we actually got him a place. He’s done, or doing, very well.

EMMA-           But will you have to go through this again? He’s nine now, he’s going to be going to secondary school in a few years, is that going to start the process all over again?

HAYLEY-        Most likely yes, unfortunately.

EMMA-           Are you ready?

HAYLEY-        No, [laughs] I don’t think anybody’s ever ready.

EMMA-           Okay. And this money that Jeremy Hunt has announced in the budget what difference do you think it’ll make to people like you and Matthew?

HAYLEY-        Well, let’s be honest, very little. 15 schools is just the tip of the iceberg. It’s nowhere near enough what’s needed. Last year there were 14,000 appeals to the SEND tribunal; I think about a third of those were placement. And we know that so many parents go to tribunal for the right placement. And obviously our Secretary of State recently has let’s just say commented on the fact that we are supposedly using them to go for high-cost placements. And I think that’s what Jeremy Hunt was alluding to there. It’s just not true. We’re just trying to find a place. We’re not trying to find an expensive place; we just want our kids to go to school and be happy and learn, that’s it.

EMMA-           Hayley Harding, thank you so much for telling us you and Matthew’s story. And I hope Matthew’s school continues to be enjoyable for him.

HAYLEY-        Thank you.

EMMA-           Stephen Kingdom is with me now. Hi, Stephen.

STEPHEN-       Hiya.

EMMA-           Stephen is from the Disabled Children’s Partnership, which is a coalition of over 100 organisations campaigning for better health and social care for disabled children. Stephen, what is this £105 million announced by the Chancellor, what is that money supposed to be used for?

STEPHEN-       It’s supposed to be used to build 15 new special schools around the country. We don’t yet know where or exactly what the special schools will provide for.

EMMA-           But will £105 million build 15 schools or would it take more than that? And if it takes more than that where would the money come from?

STEPHEN-       It depends on the size of the schools and the particular circumstances of their sites and so on, and what they’re providing for. I think it’s probably a reasonable estimate. But then on the other hand there were reports over the weekend that the last tranche of 33 new special schools are being delayed, so that is a worry about whether there’s enough money and whether this provision will come online as quickly as the government has promised.

                       What’s needed isn’t just about more physical capacity. It will take time for these places to come on board. But the crisis in special educational needs is happening now. What we need is the resource in mainstream schools to better support children who are being educated there; we do need more special school provision; we need more specialists; we need more speech and language therapists; more occupational therapists; more educational psychologists. So, it’s not just about the physical buildings, but it’s about the people who will work in them and who will support children, and it’s about supporting children in whichever setting they’re in.

EMMA-           And the money that was announced is that just for the buildings or is it including equipment, teachers, support staff etc?

STEPHEN-       As far as we know it’s just about the physical capacity, so just for the buildings.

EMMA-           I also want to ask you another question that you might know the answer to. This is for specialist free schools, what does that actually mean? What are specialist free schools?

STEPHEN-       Well, free schools are forms of academies, they’re new academy schools that are proposed by academy trusts. And I think this is a worry in the sense that it means that local authorities can’t plan really clearly where the places need to go because they’re reliant on finding a promoter who will put forward that free special school in that area. Which means they’re slightly at the mercy of where those promoters are and where those places will come rather than the proper…

EMMA-           What do you mean the promoter?

STEPHEN-       So, academy trusts, other providers. That means that it’s really difficult for the local authorities to ensure the places are going where they’re most needed and have that sort of proper commissioning and proper planning of where places are.

EMMA-           I kind of want to know what sort of money you think needs to go in to match the actual need.

STEPHEN-       Well, David Davis and another 70 Conservative MPs wrote to the Chancellor before the budget and said they thought they needed an additional £4.6 billion in special educational needs funding. And that’s probably not a bad figure. And that’s just in the education side. We’ve assessed a shortfall of £2.1 billion across health and social care support for disabled children and their families. So, we are talking very big figures which is why, while any additional investment is welcome, this feels very much like a drop in the ocean.

EMMA-           Stephen Kingdom, thank you for your expertise.

STEPHEN-       Thank you.

EMMA-           We could not do Access All without you, the listener. A lot of the things we cover are from messages you’ve sent us or stories you’ve shared with us. But we particularly want you to get in touch over the next few weeks because we want to celebrate our 100th episode. It’s happening in the middle of April and we want you to get involved. I’m asking you to send us a message or an email, however it works for you, and tell us the best advice you’ve ever received from another disabled person. Tanyalee Davis said a radar key – good answer. And we’re going to be asking everybody that over the next few weeks and we’d love to hear your answers as well. So, if you want to get involved please email [email protected], or you can get onto the WhatsApp and give us a voice message or a text message. Just pop the word Access in before you send it. The number for that is 0330 123 9480. And you can find us on Instagram and X as well. So, the question we’re asking is: what’s the best advice you’ve ever been given by another disabled person?

                       My next guest had aspirations of becoming a professional rugby player when an accident while on holiday in Portugal when he was 17 meant that he became paralysed from the shoulders down. Whilst navigating his life as a disabled person and the loss of his rugby career he found a new love, which was painting with his mouth. He has since gained a heap of celebrity followers for his pictures, he’s written two books, and there has been an actual musical made about his actual life, called The Little Big Things. I’m absolutely delighted to welcome to Access All Henry Fraser. Hi Henry, how are you doing?

HENRY-          I’m great, thank you. How are you?

EMMA-           I’m good. You have a musical about your life. How did that happen?

HENRY-          It’s kind of a weird link to the guy who wanted to write the musical: he read my book, told his housemate about me, and his housemate at the time she was dating one of the guys my brother, Will, played rugby with at Saracens. And he was like, I work in musical theatre so I really want to write a music and somehow get in contact with Henry. So, I got this email from him saying, I read your book, loved it, I want to make it into a musical. And I was kind of just like okay, that’s quite weird. I never thought, of all the possible routes that the book may have taken, I wouldn’t have put a musical near the top.

EMMA-           So, the musical does tell your life story, but it does take plenty of artistic licence, as it should and as all musicals do. But is it okay if we go back and learn a bit about your learn story? And can we start with Henry before Portugal?

HENRY-          I mean, on paper it was awesome. I would say I would define my pre-accident life by my physicality, by my sport, by gym, by all these things. Because mentally I wasn’t confident or strong at all. So, yeah, it’s kind of basically a whole reverse of who I am now.

EMMA-           And what happened on the holiday? I mean, you’ve told this story 50 million times probably, but if you don’t mind [laughs] I’ll ask again. What did happen on that holiday to mean that you were paralysed from the shoulders down?

HENRY-          Yeah, so we were just mucking about on the beach. I missed the first day, two and a half days because when I got to the airport to leave to go to Portugal I found out my passport had expired.

EMMA-           Gosh.

HENRY-          Yeah, if you believe in signs or omens or whatever that was probably a pretty big one [laughs]. So, I came home, managed to get up to Liverpool the next day and get a brand new passport. Yes, I was just enjoying my time on holiday with my mates on the beach, as we had done every day we had been there so far. South of Portugal in the Algarve, middle of summer, boiling hot so I decided to cool off in the sea. I ran in to a spot where I thought it was good depth but then it actually wasn’t basically. I went headfirst into a sand bank. I opened my eyes expecting to get up, get out of the sea and go and join my mates on the beach and start planning our night out, but I opened my eyes and I was still just there in the water, totally unable to move, to do anything. I think initially my mates probably thought, you know, I was joking, I don’t need to be in the water or just playing games or something. But luckily one of them saw me. I kind of saw his feet walk up next to me so I managed to turn my head slightly. He asked if I was all right. I managed to kind of mouth half out of the water and say no. And two of my mates just dragged me to the beach and that was it. I thought I was going to die in that moment.

EMMA-           I cannot even imagine, like, it’s beyond my realm of imagination how scared you would be in that moment. And tell me a bit about what happened in the few months after that. You were in Portugal for a bit and then you managed to get back to England.

HENRY-          Yeah, so I was taken away in an ambulance and then to a field, and then I was airlifted to Lisbon. So, then I was away from all friends, all family, I had no one around me, I was alone. Rushed immediately to x-rays. They did the x-ray and then there was a whole, like, emergency after the x-ray. I had no idea what was going on. Then the doctor put this numbing cream on the side of my head, and then before that could even take effect he was basically screwing this kind of metal halo almost into the side of my head, it was literally going into my skull this thing. Because it turned out that I’d dislocated my fourth vertebrae, so when that slid out of place it dragged all the nerves and everything from the spinal cord with it basically. I dislocated so much initially I thought I’d just severed my spinal cord. It turns out it’s just severely crushed, but obviously its damage is irreparable. So, with that metal halo basically I was lying flat and they would hang weights off the end of it to try and stretch my neck out, try and get the vertebrae to do its own thing and slide back into place. And then after three days that just wasn’t working and my vitals, oxygen levels just dropped off. Rushed to surgery, that didn’t work. I woke ventilated, tubes down my mouth, couldn’t breathe, had all these bags. I basically had pneumonia, MRSA, septicaemia. I was in absolute state.

EMMA-           And how was your mindset throughout the recovery? Because you mentioned that you struggled a bit before the accident. Were you just quite a different person? Mentally how were you during the recovery?

HENRY-          The first few weeks especially a bit hazy at times, a bit blurry. But I’d say mentally I didn’t really kind of check in properly until I was put into the wheelchair for the first time and I saw myself in that reflection. I think until that point I’d just been in a bed the whole time, and in the back of my head I guess there’s always this constant I guess seed of denial: I’m going to get up and walk out of this hospital and be like this never existed.

EMMA-           And then you saw yourself in a window?

HENRY-          Yeah. I mean, it was great to be out of hospital. I’d been lying in bed for 13 weeks so I loved being up and about seeing the hospital, seeing all the places friends and family had spoken about, I could actually see it and not just try and picture in my mind, it was there. And it was late summer so it was warm, it was bright, it just felt really, really good. And then I remember about to come back in two giant glass doors at the entrance to the hospital, and in that moment the first time I’d seen my own reflection since the morning of the accident, and it just, yeah, I lost everything in that moment. It wasn’t me I was looking at; just this thin boy, just looked so weak and frail and fragile. I had the tracheotomy in my throat because I couldn’t breathe independently, I had this big headrest and armrest because I couldn’t even support my own head at that point. The moment I got back to my room I just asked my mum to pull the curtain around my bed and I just broke, absolutely broke and I was just crying and crying. It was the first time I asked the question why me, why has this happened to me. And I just remember lying in bed that night and I just let everything go in that moment. I just released it all. And I remember just staring at the ceiling and just thinking to myself, okay, at no point am I being sad or angry about this, I may as well just get on with it.

                       It wasn’t like I didn’t accept everything I that moment at all. It was just a big step for me to go, right, okay, I need to start looking at things differently, I need to start challenging myself.

EMMA-           And do you think that your sporting mindset from your rugby, and also the physicality that you had, do you think a lot of that helped? Or was it other things that were the special drivers for you?

HENRY-          The thing I enjoyed most was being in the gym before my accident, because I was just naturally physical strong anyway and I could push myself to levels that very few people I knew were able to do. So, I was like, okay that was always my focus before, so I guess that’s going to be what I’m going to use to help me get on track and start thinking about these exercises as my gym workouts. You know, they’re totally different things, but I need to find that almost just familiar feel of something to keep me on track. Yeah, and then I basically had to move all my physical strength into my mind, and I had to make it a mental strength, I had to change it and completely reverse, you know, who I was almost.

EMMA-           Yeah, your identity. And that’s so interesting in the musical where they have non-disabled Henry and they have disabled Henry, to get past that bit where there’s a non-disabled person playing a disabled role, it’s really interesting the different identities. Do you bring a lot of that stuff through to your painting? Because you’re such a successful mouth painter – and I’ll ask you a bit more about how you do that – but what’s made you so successful as a painter, do you think?

HENRY-          I think it’s I’ve not tried to settle on something I want to; I like to have those little challenges for myself and trying something. and understanding that, you know, if something goes wrong, if I fail at something it’s not the end of the world. I used to be so scared of failure before my accident that I wouldn’t go into things so scared that I’d want to do really well and try really hard to do it, I’d be so scared that I would go, I’m not going to do this because I can’t deal with it not going well. Whereas now it’s like, okay, that doesn’t matter, what do I have to lose if I just try this.

EMMA-           So, how do you paint? I’m actually blind so I’ve not seen all the videos, so tell me how you go about painting a picture.

HENRY-          So, I basically have a mouth stick. It’s almost got like a V shape on one end and these two rubber sleeves I just grip on. And then on the other end there are little screw clamps that I just slide the brush into, tighten that up and get that ready to go. When I’m at home I just sit with a couple of cushions on my lap as armrests, I put a cloth across that to wipe my brush with, I have the easel with a tray underneath with the water and paints on it, and when I’m in that position I’ve got control of everything. It’s just me, easel, audiobook, in my own little world. Obviously my physical limitations define the size of the board or canvas that I use, just because I can’t reach certain areas. So, sometimes I do have to paint upside down, I do have to paint sideways – not me, the painting.

EMMA-           [Laughs] yeah.

HENRY-          But, you know, these are all little things that along the way I’ve just learnt different ways to do things I guess. As you know, we’re always having to adapt, we’re always having to learn and find new ways to navigate life and what we do.

EMMA-           Yeah, exactly. How would you describe your style of painting?

HENRY-          I’d say it’s almost quite graphic in terms of the design. It’s always a lot of single figures, colourful figures on a single coloured background, so it’s very kind of stark, there’s always some contrast. So, it’s not too busy, but I like to think it’s kind of bright. It’s always involving colour, always involving something new, most times involving nature. You know, nature is a beautiful, wonderful thing and it’s always nice to try and recreate those moments, I guess.

EMMA-           And you’ve got an exhibition coming up later this year, haven’t you?

HENRY-          Yeah, it’s my fourth one, it’s coming up in September. So, I need to get working on that because the last six months I’ve been enjoying the musical too much and all the fun that that’s brought, that I do actually now need to get painting.

EMMA-           Where do you paint? Where’s your studio? Where are you?

HENRY-          So, it’s in my house my studio. When I was living with my parents I had my easel set up at the dining room table. But when I built my own place I made sure there was a studio space in there.

EMMA-           Because you’ve designed and created your own house.

HENRY-          The house just came up for sale, I saw it immediately and just thought here’s a perfect, like the plot size, everything about it is spot on. So, I bought the house, ripped it out and built a brand new one, started all over again. It’s a beautiful house to be in. It’s all designed around open space, the sunlight, lots of glass.

EMMA-           Have you got lots of technology so that you can make things happen without help and stuff like that?

HENRY-          No. I had the option to but I didn’t go for it because I need obviously help with everything I do anyways, I just thought I’m building in a lot of tech stuff, for me just trying to replace it when it goes wrong or if it needs updating I think would just cause me more hassle than it would otherwise.

EMMA-           So, it’s more about the space and the light. And I was reading that you’re able to see through to different rooms, so even if you’re stuck in one room it doesn’t matter as much.

HENRY-          In the studio space with the door open I can see actually right through my bathroom window at the very back of the house. If I change my angle I can see through the glass cabinet out into the garden. There’s huge windows basically looking at the front courtyard. If I’m stuck in bed through whatever health reasons, or just absolute burnout, I can open my bedroom door and see right through the main part of the house really. You just don’t feel trapped in any moment, which again is very easy to be in this situation.

EMMA-           Henry, it’s been an absolute pleasure. Thank you so much for speaking to me.

HENRY-          Oh, no, pleasure. Thanks for having me on. It’s been great.

EMMA-           Oh my goodness, Henry Fraser, such an interesting and positive guy. And one thing I loved from that interview was that he says he’s got very little tech in his house, because you always expect people who can’t use their hands to have all this talky tech and stuff to open your curtains. But he says no, and I like that a lot.

                       That’s your lot, guys, for this week. Thank you so much for listening. Thanks to our guests. And please get in touch with us, I love to hear from you. You can send us a WhatsApp 0330 123 9480, or you can email [email protected]. And I’d love you to subscribe as well, particularly you guys on 5 Live if you’re listening during the night, and thank you so much for listening. You can go to BBC Sounds or wherever you get your podcasts from and press the subscribe button. Thanks again for listening. Goodbye.

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