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8th January 2024

bbc.co.uk/accessall

Access All – episode 85

Presented by Nikki Fox and Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I am going to give you lovely lot a little lesson on braille, okay. Think of a dice and think of the six on a dice, and you’ve got two dots at the top, two tops in the middle, and two dots at the bottom, so that’s six dots. And that’s the way a braille cell works; that’s the way each character in braille is a combination of those six dots, okay. So, the top left dot, that’s an A, or a one if you put another symbol before it, just to make it complicated. If you put another dot, the one in the middle on the left down beside it, that is a B, okay. And if you just put all six dots down together it is not a C, it is not a Z, it is actually the word for, F-O-R. I love to use my really old Perkins, which is like a typewriter type thing; it's metal and it’s plastic and it’s heavy and it crunches the dots out onto paper using pins that make little holes in the paper. And you might think that that’s really, really primitive, but actually they’ve brought in lots of new technology which means that you can read it on your computer. I’ve got braille in front of me right now, that’s what I use to help me read my script. It’s electronic braille. And it can be really modern and really helpful, as young Eryn in Northern Ireland told us on the news this week:

[Clip]

ERYN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s made a big difference in my life because without it I wouldn’t be able to read, I wouldn’t be able to write, I really wouldn’t be able to do much. But I can still access braille in hard copy and I have a selection on books on this device. Ìý

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý She loves braille. I’m so pleased. And it’s so nice to hear really young people coming up and talking about braille, because I am a huge braille fan and a huge braille advocate; it’s so, so helpful. It’s on medicine packaging; it’s on all of my spices, so I get the brailler out and I braille all of those, so I don’t have to use any technology in the middle, I can just put my fingers down and know whether I’m using cinnamon or paprika, because it’s kind of good to know the difference between those two. So, the reason I’m talking about braille today is that it is 200 years since Louis Braille invented braille. And he was only 15 when he did it. Louis Braille lived in the 1800s and he is a legend. I’m very pleased with Louis for doing that for me. It’s changed my life. And only 10% of blind people read braille, for various reasons. And lots of people think that blind people don’t need braille because we can listen to audio books and screen reading software etc etc. But you cannae beat having the dots under your fingers and being able to get from finger to brain.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý This is Access All, a weekly podcast from the ´óÏó´«Ã½ about disability and mental health. I’m Emma Tracey and I’m in Edinburgh. And on this week’s show: people with ADHD can be impulsive and they can easily lose things as well. It means they sometimes end up spending more money than your average person; and this is known in the ADHD community as the ADHD tax, and we’re going to be talking about that a little bit later on.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Former Paralympian and convicted murderer, Oscar Pistorius, has left prison. We’ll be speaking to our correspondent in South Africa to see what people are saying locally.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you will get your Nikki Fox fix later when Nikki and I interview Ella Glendining, a documentary maker who went about finding someone with the same extremely rare impairment that she has. Did she find them? And did she get to talk to them? And how did it feel? We’ll find out later on.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And if you’re listening on 5 Live and only catch us from time to time, I invite you to make a permanent connection with us, because we are a podcast. You can subscribe to us on ´óÏó´«Ã½ Sounds or wherever you get your podcasts from. Why not join our club?

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The weeks after Christmas can be tricky for all of us when it comes to managing our finances. But for many disabled people it can be a never-ending experience of extra cost. I’m blind and I do things like take more taxis, which is more expensive for me. But one group that I hadn’t really considered were people with ADHD. So, they might have poor attention to detail when filling out forms, might lose things and break things. And that extra cost associated with those things is known in the community as the ADHD tax. And here to give us their take on how the ADHD tax has affected is Rach Idowu. Rach was diagnosed back in 2020 at the age of 26, and they’re behind the successful newsletter Adulting with ADHD. Rach how many thousands of pounds do you reckon that you’ve lost because of your ADHD?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, this is a painful question. But I would estimate around – to caveat I am turning 30 so this is over a lifetime – I would say over around £4,000 probably on ADHD tax unfortunately.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right, £4,000. And what kinds of things was that on?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I would say one was getting a credit card and not reading the terms and conditions, so again the lack of attention to detail, and not realising how much interest I would have to pay them back.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow. Our producer Alex has ADHD and he was telling me that he’s lost countless earbuds and can’t manage with wired earphones, and has also lost lots and lots of pairs of glasses, probably, like, ten pairs. What sorts of things have you lost? Or is that something that happens to you as well?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, I feel his pain. From keys to bus passes. I used to lose my bank card quite a lot, surprisingly, to the point where I tried to order another one and my bank told me I can’t get another one because it’s suspicious that I keep on losing my cards and requesting a new one. So, I actually have to go down to my local branch with my passport and ID to show them that it is me, and explain why I kept on losing my cards. And it’s simply because I didn’t have a wallet; I would just have my card in a pocket.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. Another issue is impulse spending.

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think I have such shiny object syndrome, so I see something, I like it, and I want to try it out. So, this could be like a new hobby idea or an interest, and I go on the good old Amazon and I just buy a bunch of things that I clearly don’t need. And then when it gets there it sits in a box or I try it out and I don’t return it. And that’s where I’d say a lot of the ADHD tax derives from is ordering things, not using them or it doesn’t fit, and I don’t return it because it’s so mentally taxing to fill out the forms, go to the post office and package it up and return it. So, yeah, that’s the impulsive purchasing.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And how does all this affect you emotionally, all this hassle, admin, cost? What sort of effect does it have on your mental health?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I would say firstly the physical space, clutter. So, having a cluttered environment can be quite demotivating. It can cloud your thinking when you don’t have a clear space. So, I would say that has been an issue for me. And then mentally it’s feeling like the guilt and shame and feeling like a failure because not being able to have this under control. So, it can be quite disheartening when you’re continuously doing something as a result of the condition that I have, but then not being able to come up with immediate solutions. So, that’s something I’ve struggled with over time. But again I’ve found a few workarounds.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý With me also is Professor Amanda Kirby from the University of South Wales. And she’s also chair of the ADHD Foundation which advocates for people with ADHD. Hi, Amanda. Thank you for joining me.

AMANDA-ÌýÌýÌýÌýÌý Hi, thank you for inviting me.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, you’re very welcome. You’ve been listening to Rach and you’ve been hearing her story. Why do so many people struggle with this who have ADHD?

AMANDA-ÌýÌýÌýÌýÌý So, ADHD is the impulsivity, it’s often the prevarication: so I know I need to send this stuff back but I just can’t get organised to box it up and send it. It’s the impulsivity of I like the shiny, I like that. And Instagram and Amazon, and we have a card that you just tap, there’s not cash that you’re spending, so that you’re not feeling that you’re spending money – that’s often a difficulty because we don’t carry cash around – so it’s often very easy and quick to make those impulsive purchases which really cost a lot of money, and also wound you at the end of it when it doesn’t work, you don’t want it, but you don’t have the planning to send it back and organise yourself. So, it covers a lot of different areas really.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And what about dopamine levels?

AMANDA-ÌýÌýÌýÌýÌý Well, that’s the hit. So, why we make those purchases, and if you’ve ever gone and bought yourself something new and it gives you a lift, often we have a lack of dopamine that’s driving some of this behaviour that’s allowing us to make those impulsive purchases, gives you a quick hit, but then it’s not got that lasting impact. The other thing about it is not just hidden taxes in terms of buying things, also we’re losing things or having accidents, we’ve heard that. I dropped my passport the other day inadvertently when I was coming back from somewhere, and you think cash, key things, keys, things that are costly to replace time-wise but also money. And we’re more likely to have more accidents as well. So, all of those things a real pervasive impact on day-to-day living.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, let’s go onto solutions now I think would be a good idea. And I’m told that banks are starting to think a lot about this. Is that right, Amanda?

AMANDA-ÌýÌýÌýÌýÌý That’s right. So, some of the banks are really thinking about how do we make sure we’re putting money away, we’re squirreling money away in different pockets so we don’t just spend everything on something shiny and then realise we don’t have enough for bills. So, you can segregate your savings quite effectively and they say, do you want to put this amount of money into this particular bit so you’ve got a rainy day fund; or you’re putting money in your taxes or you’re putting money into saving for something. So, they can put it into the separate pockets, and they’ll prompt you to do that. So, that’s quite useful.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And then things like with direct debits, we’ve heard direct debits can really make a difference that we make sure that the payments of the things that you have to pay is automatically done, so we’re not having to think about it. And that really helps quite a lot.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And then I think not having the shiny opportunities, so maybe not linking your cards to Apple Pay that you can quickly click and spend may just give you a couple of minutes to go, should I do that.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, a bit of breathing space.

AMANDA-ÌýÌýÌýÌýÌý Exactly. That can help quite a lot as well.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We spoke to Monzo Bank and we spoke to Natalie Ledward there who’s the head of vulnerability, access and inclusion, and we asked her what they’re doing:

[Clip]

NATALIE-ÌýÌýÌýÌýÌýÌý Monzo is designed to give people clear visibility over their spending behaviour. So, to highlight a few features: instant notifications, they show in real time where your money is going. Spending categories prevent impulse spending by creating limits in specific areas. And Pots is a great budgeting tool because money spent comes out of a particular pot rather than your overall balance, for example bills.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Rach, you’ve been listening to that message and to what Amanda was saying about other banks. You’ve had some tricky relationships with banks in the past; do you think they’re doing better nowadays?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, one of the things that I should mention that I struggle with when it comes to ADHD tax is subscribing to so many different things to try it out for, let’s say, a one-month free trial period, and then forgetting to cancel or just not being aware of when the money leaves my account. And I find that it’s just visually pleasing in terms of the app. It’s almost for me like a financial planning because you have the different categories and you can, kind of, keep on top of your spending. It’s just easy for me to find things.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, visually at a glance you can just look and say, right that’s that, oh that came out. Visual ways of looking at something really quickly are they useful when it comes to managing stuff around ADHD?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes to me. If I’m not interested or excited at something I’m looking at my brain switches off, so it almost doesn’t pick it up. Maybe I could have dyslexia and I don’t know about it, but the way certain colours and even the way certain things are written and with fonts clicks with my brain a bit more. And I find that with the Monzo app just how it is visually and how it’s designed, the UX/UI design is really helpful for my brain to, kind of, plan and stay organised and stay on top of things.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What other solutions have you put in place?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’ve got a wallet. But I also have this thing at home called an important box. It’s actually an old knitting kit box where I put my keys, my wallets, my AirPods or anything that’s important, because I know it should be there and it will be in there. And that’s mainly because I have different jackets and different bags and I may forget to transfer something from one bag to another, which happens. I have ADHD, I’m forgetful. So, just having everything in the important box will enable me to remember to put it back there or pick it up when I’m heading out, and I won’t have to worry about did I take something out of a different pocket, or did I leave my wallet in a different bag. So, yes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, it’s having a routine of just walking in and putting it all into that box?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, and then my brain registers it and it just becomes second nature, so I won’t have to stress about organising, planning or remembering things because I’ve just made it so easy for my brain to remember this is where it’s always going to be.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Sure. So, one option maybe for getting some financial support is Personal Independent Payments or PIP. And that’s a welfare benefit which is designed to cover or try and meet the extra cost of being disabled. And here’s a couple of facts around PIP and ADHD – we’ve got all the alphabet acronyms going on here, haven’t we.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý In 2023 there were 52,989 PIP claimants with ADHD listed as their main disabling condition. This makes it actually the 14th most common condition being awarded PIP. 79% of thoseÌý claimants were in their 20s. Do you get PIP, Rach?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, no, I actually knew that people with ADHD could claim PIP and there’s quite a few people have used it. I wish more people knew about it because that sounds super helpful, and I know lots of people will benefit from using PIP.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. So, will you be applying now?

RACH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What I’ve thought about applying to is actually Access to Work. So, it’s a grant for people who are working and who may need special aids. So, if you are neurodivergent or disabled you can apply to, let’s say, have an ADHD coach through the Access to Work scheme, and your employer or the Access to Work grant will fund it. So, I am thinking about looking at things that will make it easier for me to navigate life with ADHD in different spheres, whether it’s in the workplace or just in daily life.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Amanda, do you get PIP?

AMANDA-ÌýÌýÌýÌýÌý I get Access to Work, and that’s helped me with coaching and supporting me. A lot of the things that we’ve talked about, Rach talked about this morning, I recognise those in myself. However, it’s interesting 79% of the PIP payments are people in their 20s. We’ve really got to think about those people in their 40s, 50s, 60s who may well be not so digitally literate and getting into huge financial troubles because they’re not so adept with some of the IT that exists. And I think we do need to reflect that ADHD is a lifelong condition, not just in young people as well.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, do you think older people are maybe less aware of ADHD and there’s maybe more stigma around it then?

AMANDA-ÌýÌýÌýÌýÌý Many women are only getting diagnosed in their 40s, 50s and 60s now, because we thought it was all these things. I think that’s been missed along the way. And I think there are a lot of people who were missed when they were younger, might have had anxiety and depression, and only now recognising that it could well have been ADHD and been living with stigma, shame and the consequences of ADHD. So, that tax might be hidden because people don’t want to talk about it, and ADHD until recently has been a stigma. People have thought of deficit and disorder and avoided really sharing that information with other people, especially if you’re in employment it’s something people didn’t feel confident telling their employers.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And that’s why they don’t claim?

AMANDA-ÌýÌýÌýÌýÌý And that’s why they don’t claim.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Rach Idowu, Professor Amanda Kirby, thank you so much for joining me.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, you will remember the case of Oscar Pistorius, the Paralympian who was convicted of murdering his girlfriend, Reeva Steenkamp after he shot her multiple times through a bathroom door at his home in Pretoria. The gold medallist and double amputee, nicknamed Bladerunner, later claimed he had mistaken her for a burglar. It shocked the world. He was freed on parole from a South African jail on Friday, nearly 11 years after Reeva’s fatal shooting. Reports so far say he’s staying with an uncle and, along with other restrictions, he’s not allowed to speak to the media. On the line from Pretoria is the ´óÏó´«Ã½â€™s Daniel De Simone who’s been following the story.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, Daniel, you’re the South African correspondent with the ´óÏó´«Ã½, you’ve been working a lot on this story over the last few days, talk me through what happened on Friday. I think for us in the UK what’s quite interesting is why he was released now when there are so many years left on his tariff?

DANIEL-ÌýÌýÌýÌýÌýÌýÌýÌý Well, in South Africa offenders who’ve committed a crime, like Oscar Pistorius has committed, do have the right to apply for parole at the halfway point of their sentence, with conditions. So, that means that although he’s come out of prison and he’s sort of, if you like, free, he’s walking around freely, he is under conditions. So, the hearing took place in November; it wasn’t public, so although we were outside the prison we weren’t allowed in the hearing, so we don’t know exactly everything that was said. His victim Reeva Steenkamp who he murdered her mother, she didn’t formally oppose his release, but she did express concern about him, very much she had a lot of doubt about whether he’s reformed, whether he’s rehabilitated.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He can walk around freely! Is that right?

DANIEL-ÌýÌýÌýÌýÌýÌýÌýÌý Well, they’ve not actually published the official list of the conditions. They’ve said what some of them are, the authorities. There would be no reason why he can’t walk around freely, why he can’t go to the shops. There would be limits, just as there are often for people in the UK who are released from prison on licence or perhaps are on bail, that they’re often required to be at a particular address. Beyond that and beyond him having to attend mandatory programmes on gender-based violence, on anger management and he’ll have to do community service, he’ll have to do other things, he would be able to walk around.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý In terms of him getting out and about, how are local people reacting to the release? How is local media reporting this?

DANIEL-ÌýÌýÌýÌýÌýÌýÌýÌý Well, it was a huge story on Friday and the day before, where there was coverage before his release, on the day of his release, and subsequently over the weekend and into this week. It’s really all over all of South Africa media. When we were at the prison and the house where we know he was taken to live, which is his uncle’s house nearby, there were large numbers of South African journalists, different South African television networks. But there was considerable effort really placed to get him out of the prison and into the other house without him being seen. So, he wasn’t seen by any of the media, despite the fact there was really a very large amount of media.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And what are they saying? What are they writing? What are they talking about?

DANIEL-ÌýÌýÌýÌýÌýÌýÌýÌý So, the issue of gender-based violence, so violence against women and girls, is a big issue in South Africa. Where his case is so well-known, and is easily the best known case of gender-based violence of a man murdering a woman in South Africa, there’s a real concern amongst campaigners on the issue and others that his early release on parole sends a message of weakness on this issue, that someone who’s murdered a woman less than 11 years ago and to be already walking around just is a terrible signal.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I should say that Reeva Steenkamp’s mother, June, did release a statement on Friday, on the day of his release, expressing some reassurance Oscar Pistorius was being made to do mandatory programmes on gender-based violence and anger management. And saying she felt that that showed that the issue was taken seriously within the criminal justice system in South Africa. But that’s a big issue really.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And thinking about murders generally, so all kinds of murders, we’re actually at a 20-year high at the moment in South Africa with regards to the murder rate. There were over 27,000 people murdered in a year. In the UK, which is a larger population in the UK, I think there’s 700 murders in a year.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow.

DANIEL-ÌýÌýÌýÌýÌýÌýÌýÌý So, you can get a sense of how many murders there actually are. And a lot of them are not solved; I think most of them are not solved. If you are convicted of murder in the UK you will get a life sentence; you’re likely to get a minimum term rather than a whole life order, but you’re going to have a life sentence if you commit murder. That means you can always be recalled to prison. Oscar Pistorius hasn’t got a life sentence, despite being convicted of murder. There will come a point in late 2029 where the conditions will expire and he would then be a free person, there will be no conditions after that. And campaigners on crime who feel that crime isn’t dealt with seriously enough and severely enough here feel also that this case does highlight that to some extent, because he is a convicted murderer who is already out and is then going to be off all conditions in late 2029.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There has been speculation around what Oscar Pistorius will do next. There’s been speculation that he might become a pastor and different things like that. Have you any idea?

DANIEL-ÌýÌýÌýÌýÌýÌýÌýÌý I’ve heard a lot of things, but a lot of it is basically speculation. As part of his parole conditions he will be encouraged to work. This isn’t a case of being under house arrest where you’re not allowed to go out and do anything. I think the speculation aboutÌý him becoming some kind of pastor is sort of generated by some comments that his father made to a paper some years ago now about him taking an active role within a Christian community in prison. But that was some years ago now, so I don’t know how well-founded that is. I don’t know, it’s very interesting, he’s so well-known that when the licence conditions, when the parole conditions do expire in late 2029 he’ll inevitably be able to find a platform. There will be people that will want to talk to him. He’s only 37, he’s out, and by the time the conditions expire he’ll be in his early 40s, so he’s actually still young. And because he’s so well-known and so famous he will still be a focus of attention, and he will still find a platform.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because this is a disability podcast it is interesting to talk about Oscar Pistorius’s time in prison. Is it felt that he was given any special treatment because of his fame or disability? And was his prison time accessible?

DANIEL-ÌýÌýÌýÌýÌýÌýÌýÌý We actually know very little officially about his time in prison. Latterly the prison he was released from, which is just outside Pretoria, it’s quite near to his family; it’s about 20, 25 minutes’ drive from the house where he’s now believed to be staying. He would have been able to get around. He would have been able to get outside. The authorities have been at pains to make it clear he’s just treated like anyone else.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Daniel De Simone thank you very much for talking to me about Oscar Pistorius and his release from prison.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Access All.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Award winning documentary, Is There Anybody Out There? has been praised by screenwriter Jack Thorne, who we all love Jack Thorne, and it’s making waves on the festival circuit as well. now, in it Ella Glendining, whose disability is really rare, films herself on a search for someone with a body that looks like hers. And she explores what it takes to love yourself fiercely as a disabled person in a non-disabled world.

[Clip]

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Being disabled in this ableist world is brutal.

MALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Growing up it’s definitely a struggle. No one wants to be like me. Not even I want to be me.

FEMALE-ÌýÌýÌýÌýÌýÌýÌý I get a lot of doubt everywhere I go.

FEMALE-ÌýÌýÌýÌýÌýÌýÌý Is there ever going to be a point where it’s not going to matter?

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I used to imagine myself in the future as better. And at some point you just realise this is it.

DR PALEY-ÌýÌýÌýÌý People want to improve aesthetics, and with surgery we could lengthen the limb.

[End of Clip]

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There is so much more to this doc. Emma and I both loved watching it. So, let’s meet the one and only Ella. Hello Ella.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello. Thank you so much for having me. I’m really, really excited to be doing this.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you so much for coming on. We don’t tend to ask people, we don’t do it at all actually on the podcast, directly all the time about their impairment. But in this case obviously it is an important aspect of your brilliant film. So, are you all right, just for listeners that don’t know, to tell us a bit about your rare disability and why you wanted to find someone who was, like, in the same boat as you or a bit like you?

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, sure. So, I have a really rare condition. I don’t tend to tell people the name, mostly because it just doesn’t feel that relevant to me. It’s difficult to explain why I think to non-disabled people, but I guess we’re talking to lots of disabled people here. It feels private, and I think as soon as you tell people the name of your condition people are super nosey. And it’s just a bit dehumanising, isn’t it? We’re so used to being medicalised and all that stuff.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I have a rare condition which means I’m short in height and I use a wheelchair for long distances. And my legs they look very unusual, they’re small and I walk kind of crouched. It was never this tragic thing; I’ve always been disabled and proud, certainly for as long as I can remember. But I also have always been so aware of feeling like the only one in the room, even in disability spaces and stuff. But yeah, I always had this longing, like I say in the film, like a missing puzzle piece that I’d never seen anyone remotely like me before.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And was your search successful, Ella, when you went searching for somebody?

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It was really interesting the kinds of similarities that I noticed between us all. I think the biggest one was that we were all class clowns, we all had this very strong desire to prove ourselves – which isn’t necessarily healthy, and I think is very common within the disability community more broadly. But yeah, there was just like this resilience that felt really rare and I really recognised in everyone I met.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The most illuminating thing was that it made me realise I already had what I was looking for, as cheesy as that sounds, I already have it in my disabled friends and the disability community generally. I didn’t need to find someone with a body exactly like mine.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’ve got a clip of you meeting Dr Paley, who’s a leading surgeon for kids with your kind of impairment. And you’re talking about procedures here:

[Clip]

DR PALEY-ÌýÌýÌýÌý The best option if you have the type 3 is what’s called a rotationplasty, and that is where you turn the whole leg around and you convert the remnant of the knee into a hip joint, and you convert the ankle, which is usually pretty normal, into a knee joint, and you put on a prosthetic. The whole idea is that you can stand at normal height. But you’re just not a great case at this age and stage. Usually we do that at age three.

[End of clip]

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Just explain a bit more about that clip that we just heard there, Ella.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, that’s when I go and meet with, as you said, the lead or a very specialist surgeon. He specialises in limb lengthening mainly, so not just my condition but kids with different types of dwarfism and stuff. So, sometimes it’s just aesthetic, and then in cases like mine he would argue it’s to, I think what he said was to improve aesthetics and function. But of course these surgeries are really major. There’s no fixed result because, I mean, these are really major operations. I found this meeting really, really difficult. I had to have two large glasses of wine before going to meet with him [laughter]. And I knew I didn’t want to go in all guns blazing as well, because what does it really achieve going to yell at people who think differently to you. I knew I was not going to change this man’s mind. And I wanted to hear him out as well, because of course it’s a really complex issue and I’m not by any means anti-surgery or anti-treatment. But I think my mum sort of says it best in the film, she says, ‘If it ain’t broke don’t fix it’. And I think that’s exactly how I feel. And I think it’s rooted in ableism this sort of operation that he’s describing, it’s just why?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I have to say I love your mum. She’s incredible, isn’t she?

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, my mum is a wonderful, wonderful person. But it was really, really important for me not to kind of perpetuate that, like, oh saintly figures that care for disabled people, the saintly parents, the saintly long-suffering partner, carer figure, whoever. That’s why I – with her permission of course – I talk about her alcoholism in the film.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, so honest.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, really honest, and I’m really grateful that she was happy for me to share a bit of that stuff.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I loved the part when you were talking to her about, you know how people say to you, do you have a sibling, you’re an only child, and you think well their thought must be well, your mum didn’t want to have another one just in case of the same condition or whatever.

[Clip]

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý How does that make you feel?

MUM-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh god no, if I could have another one like you that’d be fine. That had nothing to do with your condition whatsoever. That’s something I’d never even thought of, but yeah, I guess.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý People ask it all the time, and it’s so obvious what they’re thinking [laughs].

[End of clip]

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý She said, ‘Just tell them that mum was too messed up to have any other children’ and it’s true. But she’s also wonderful. I think what my parents did amazingly though, and I think what comes across in the film, is that they accepted me. That’s all. They’re very human, they messed up in the way that all people do, they are not saints, but they’re wonderful people. But what they did amazingly well is just accept me. And it shouldn’t be rocket science to accept your disabled child and not immediately, like desperately try to make them non-disabled or as close to non-disabled as possible. It’s just so tragic I think.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You had quite a few things chucked at you as well, didn’t you, during filming. Because COVID for one, not good.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Baby, amazing. You had a baby.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I did.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, how did that all change the story and where you were going with the film when you first initially thought of it?

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think it adds a whole new depth for the story, in the way that I can’t even imagine what the film would be without the pregnancy now, because I’m reflecting so much on my own childhood and also my mum’s experience of being pregnant.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I realised that in the documentary friendship was very important to the story too, and your friend, Naomi, who’s autistic. What did the big chats with lots of gin that you had with Naomi in the film what did that bring to the story? It feels like it was sort of identity and disability politics etc.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, Naomi she’s my favourite part of the film really.

[Clip]

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I used to imagine myself in the future and I imagined myself as better, you know. And at some point you just realise it’s not going to happen and this is it. But, um, that’s incredibly freeing at the same time. That’s so freeing because it’s like this is it [laughs] and it’s fine, it’s wonderful.

NAOMI-ÌýÌýÌýÌýÌýÌýÌýÌýÌý That is so powerful.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

[End of clip]

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The scenes with Naomi I’m so proud of because I think you never seen on screen two disabled friends hanging out and chatting about disabled stuff in a way that, you know, is perhaps not…yeah, it doesn’t include non-disabled people; it was about us and our experience. And I think what’s so interesting about our chats is that we have really opposing experiences of disability physically – she’s got a neurological disability, she’s autistic; I’m not autistic but yeah, look incredibly different and I’m physically disabled – but we experience ableism and feel about ableism exactly the same way, which I just think is so interesting. She’s really, kind of, yeah definitely a soulmate.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What’s next for you? What do you want to do after this brilliant doc?

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m in the process of writing my first fiction feature at the moment, which is a historical drama about the life of a court dwarf in the 1600s. And, yeah, it’s a disabled character at its core. It’s about his journey to overcoming his internalised ableism, and finding community with the court fools of the palace.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wowzers!

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I’m writing that and will also direct it, so that’s what’s next. And I’m so excited it.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And that’s for screen, is it? Is that for TV or is it a film?

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a film, it’s a feature film, yeah, for the BFI.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You can watch Ella’s, it’s just a brilliant film – I’ve got captivating here on the script but I’m searching for an even better word than that because it is just so watchable – it’s called Is There Anybody Out There?Ìý and it’s online via the BFI Player. And there’s also optional audio description too. Definitely check it out, it’s brilliant. And come back, Ella.

ELLA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you, I’d love to. And I feel very starstruck; you’re both totally amazing and I love Access All.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý A big thanks to Ella there. It was absolutely great talking to her. And Nikki will be back soon. She’s off on assignment at the moment, as they say. And that’s it for our first show of 2024. And we have some good news to end on though. Remember the York City Council Blue Badge ban in all pedestrian areas of the city? Well, that was brought in in 2021 and there was a big disabled-led campaign to reverse it. We found out late last year that it was reversed, but this week was the first time that residents were able to come into the city and park with their Blue Badges. Just in time for the sales as well. Brilliant.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let us know what you think of Access All. You can get in touch with us on X, formerly known as Twitter, and on Instagram @´óÏó´«Ã½AccessAll. And our email is accessall@bbc.co.uk. We’re all about disability and mental health, so if you do know someone who think would particularly enjoy the podcast please do tell them about it. And do share us on your own social media, that would be great as well. Thanks for listening for another week. See you.

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