UK government questioned on commitment to disabled people’s rights

 

20th March 2024

bbc.co.uk/accessall

Access All – episode 96

Presented by Emma Tracey

 

 

EMMA-           Hello, Madison Tevlin.

MADISON-     Well, hi.

EMMA-           Hi. You are the woman of the moment. You are all over the internet, aren’t you?

MADISON-     I know, it’s crazy. It’s so overwhelming.

EMMA-           Your video has gone not just viral but mega viral, like, 100 million views viral. It’s called Assume that I Can, So Maybe I Will, and you, Madison, start by talking about all the things that people assume you can’t do, and therefore you maybe won’t do. But then the tables turn and everything changes. Here’s a clip:

[Clip]

MADISON-     Hey, if all your assumptions become reality [rock music] then assume I can drink a margarita. You serve me a margarita so I drink a margarita. Assume I can live on my own, so I live on my own. Assume that I can hit harder, so I hit harder. Assume that I can learn Shakespeare, so ‘what fool these mortals be’. I learned [swears] Shakespeare. You assume I can swear, right? Assume that I can do that job; that I can got to parties; that I can have sex; that I could be on stage. Assume that I can, so maybe I will.

[End of clip]

EMMA-           Oh, my goodness, Madison. How does it feel to be really famous and have gone viral like that?

MADISON-     It’s been overwhelming. I’ve been getting lots of messages. My phone was blowing up like crazy. And everything’s, like, coming up. I can’t believe this. It’s so shocking.

EMMA-           And how did you end up in this film?

MADISON-     NDSS reached out to me and they asked me to do a self-tape. So, I did my self-tape and it was filmed in Barcelona.

EMMA-           Oh, you got to go to Spain to film it?

MADISON-     Yeah. It was one of the best experiences of my life for sure.

EMMA-           Wow. And when you read the script did it speak to you? Did it feel like something that you could identify with?

MADISON-     That’s everything I would say about myself completely, for sure. Like, when I read the script I just knew it was made for me. I brought out all my personality, everything came out, all my sassiness, and I brought out the energy, and it felt so much fun. It was so fun, it was so powerful, it was so moving, and I was feeling all the mixed emotions.

EMMA-           And it’s about people having lower expectations of disabled people than they should. Have people had lower expectations of you in the past?

MADISON-     Well, I had a lot of people look past me all the time, they’d be like, oh she can’t talk, she can’t walk, she can’t do this, she can’t do that. But actually I’m proving everybody wrong. You know what I love to say, that I have Down’s Syndrome, but it’s the least interesting thing about me. It’s a part of who I am, but it's not all me. This is all about our differences, not just today but every day.

EMMA-           Madison, I have had a lot of fun with you in this little bit of the show. Will you come back and talk to me for longer next time?

MADISON-     Of course.

BOTH-             On with the show!

MUSIC-           Theme music.

EMMA-           Hello, and welcome to Access All. We are the BBC’s weekly disability and mental health podcast. I’m Emma Tracey, coming at you from London. And this week the British government has been giving evidence to a United Nations committee hearing in Geneva about the way disabled people are treated in Britain. And also we have Don Biswas, an autistic dyspraxic comedian whose parents are of Indian origin, and that makes his act pretty unique.

                         We love to hear from you. Get in touch, drop us an email accessall@bbc.co.uk. And please subscribe to us on BBC Sounds.

                         This week the British government appeared in front of the United Nations Disability Committee. Now, that is the same committee which previously ruled that the UK was in breach of the United Nations Convention on how disabled people should be treated. Here’s a taster of what went on:

[Clip]              

ROSEMARY-  The convention incorporates cross-cutting obligations, including Article 8 which requires states to combat stereotypes, prejudices and harmful practices relating to disabled people. Yet we find a pervasive framework and rhetoric that devalues disabled people and undermines their human dignity. Reforms within social welfare benefits are premised on a notion that disabled people are undeserving and skiving off and defrauding the system. This has resulted in hate speech and hostility towards disabled people.

[End of clip]

EMMA-           That’s UN special rapporteur Rosemary Kayess. She’s an independent advisor to the UN committee. Next we’re going to hear from the other special rapporteur, Laverne Jacobs, and she’s talking about the consequences of benefit sanctions. And just a note that this clip does contain themes that you might find distressing:

[Clip]

LAVERNE-     In addition to the many individual reports that we have received, a research study published by a group of UK academics in 2015 found that the government’s programme to reassess capacity benefits through a work capability assessment was linked to approximately 600 suicides in three years. We have also heard reports from individuals who receive little, inappropriate and/or abusive treatment in response to their mental health crises; crises that are often caused by the benefit assessment process.

[End of clip]

EMMA-           This session in Geneva relates to an assessment that took place way back in 2016. And it was carried out by the United Nations Committee for the Rights of Persons with Disabilities. The committee said that the UK had committed grave and systematic violations of disabled people’s human rights. On Monday British civil servants gave evidence on the progress the UK government has made to fix the problem. Rachel Charlton-Dailey, a disability journalist, was at the hearing and she’s with me now. Hi Rachel, how are you doing?

RACHEL-        Hello, I’m good. I’m very tired because I’ve just gotten home from Geneva, but I’m good.

EMMA-           That’s good. It sounds like it was a very, very busy couple of days. Let’s just go back to basics here, Rachel. The treaty is the United Nations Convention on the Rights of Persons with Disabilities; that’s its official name. Now, that’s quite a mouthful. What actually is it?

RACHEL-        So, the Convention on the Rights of People with Disabilities is a set of agreements that were set up by the UN. Basically it’s rules that governments should follow to ensure that disabled people can live fulfilled lives. However, these are not legally binding rules.

EMMA-           And I said earlier that the committee found that the UK government had committed grave and systematic violations of disabled people’s human rights. What violations were they?

RACHEL-        So, in 2016 the UK government was the only member to have been found to have violated the convention. In particular it was measures that had taken place because of austerity and that had adversely affected disabled people. The conventions breached rule 19, the right to live independently and be included in the community; 27, the right to work in employment; and 28, the right to adequate living standards and protection. Among that cited were things to do with social care, housing benefits, the fact that eligibility criteria for personal independent payment was very stringent, and the scrapping of the independent living fund.

EMMA-           What was the hearing like, Rachel?

RACHEL-        It was honestly amazing. It was such an incredible thing to be part of. It was a really long day. It was infuriating, of course it was infuriating, but it felt so important because there were so many disabled people’s organisations in the room and that it meant the message of solidarity was shared so much amongst us, but also on social media by how many of us were there and making such a big deal of it.

EMMA-           As you’ve already mentioned, a number of DPOs, disabled people’s organisations, were in Geneva this week. One of those DPOs is Inclusion London, who campaign for equality for deaf and disabled people. Rensa Gaunt is from Inclusion London and she’s on the line. Hi, Rensa.

RENSA-           Hi.

EMMA-           Inclusion London has been involved since the very beginning, 2016 right?

RENSA-           Yes, absolutely. The process was started in 2015 because under the convention if the UN Disability Committee get evidence that a party has broken the convention they can investigate. And that’s what happened in 2015: they came over to the UK, they interviewed about 200 people, they had about 3,000 pages of evidence to go through. That’s how they found that the UK was in breach.

EMMA-           Am I right in saying that actually it was disabled people and disabled people’s organisations who asked the UN to come and assess the UK government?

RENSA-           That’s absolutely right. So, activists from Disabled People Against Cuts had gathered so much evidence about the human cost of austerity and the benefit sanction regime they’d brought that to the UN, and that’s what triggered the enquiry. We were the first country in the world to be investigated for breaches of this.

EMMA-           And have any countries been investigated since, do you know?

RENSA-           I think there have been a few subsequent investigations. But, as I say, we were a world leader, we were the first.

EMMA-           So, what role does a DPO like Inclusion London play in these processes?

RENSA-           It’s an important distinction between disabled people’s organisations and disability charities. Often in big disability charities the people making the big decisions aren’t deaf and disabled people; whereas in our organisations it’s us, it’s run by and for us. And that means that our priorities are really what’s counted. Lots of DDPOs, so deaf and disabled people’s organisations came with us this year and contributed evidence, and that means we’re hearing directly from deaf and disabled people, we’re hearing their true testimonies and we’re relaying that to the UN rapporteurs. We were really heartened to hear that the UN rapporteurs quoted that disabled people face intolerable conditions and even death while trying to comply with the benefits regime, and that there are significant and shameful gaps between the convention requirements and our lived experiences. So, that was really heartening to us to think okay, the government isn’t listening to what we’re saying, they’re not listening to the UN either, but the world is going to hear what the rapporteurs are saying. And that is really powerful for us.

EMMA-           What happens now? Will there be a report? Sanctions?

RENSA-           So, there will be a report. And we’re hoping that there will be strong recommendations from the UN rapporteurs to say the changes that the UK government has to make for the enquiry. In 2017 there were some recommendations for the UK government, there were 11 recommendations, and the UK government disregarded all of them. So, we are ready for that to happen again.

EMMA-           Are there any sanctions that the UK could face?

RENSA-           To my knowledge no.

EMMA-           So, is this all just bureaucracy then? Just all a sort of a talking shop?

RENSA-           Well, the UN can make recommendations. And the UN is one of the highest bodies in the world, you would think that the government would listen to that, or at least would be embarrassed to have been found in breach of the convention that it signed up to on purpose. You would think that would be enough of a motivation, but it seems like it isn’t.

EMMA-           Thank you very much Rachel Charlton-Dailey, disability journalist, and Rensa Gaunt from Inclusion London. I also caught up with the Shadow Disability Minister, Vicky Foxcroft, to get her reaction to the hearing:

VICKY-           Obviously I’d like to see the government listen to it and to take it seriously and to stop, you know, kind of with the rhetoric that everything is fine when we know that it’s not, and also the evidence session has absolutely highlighted it that, you know, there is need for lots and lots of change, and that there have been truly systemic failures under this government.

EMMA-           We asked the disability minister, Mims Davies, to speak to us but she wasn’t available. But the DWP, Department for Work and Pensions said:

DWP-               This government is committed to the UN convention on the rights of persons with disabilities, and looks forward to outlining the UK’s progress in advancing the rights for disabled people in this country. Our national disability strategy and disability action plan are delivering tangible progress. This includes ensuring disabled customers can use the services they’re entitled to, disabled people’s needs are better reflected in planning for emergencies, and the UN CRPD is better understood across government. We are making this country the most accessible and, importantly, equal place to live in the world.

EMMA-           We love to hear from you so please do contact us on our WhatsApp number, 0330 123 9480. You can send us a voice message or a text message there, but please write the word Access before your message because it does help us to find it. Also you can email us accessall@bbc.co.uk. And we’re AccessAll on X formerly known as Twitter, and we’re on Instagram as well.

                         Now, it’s our 100 episode coming up and we’d love to get your thoughts on something: we’d love to hear the best advice that another disabled person has given you. And someone has been in touch, hooray, and they have sent us a WhatsApp message to tell us that they were told that mobility aids are not shameful. They said that they know people who have a lot of stigma against mobility aids, but this bit of advice has helped them a lot. And their particular mobility aid is a collapsible stool called Socks. I love that. I can’t get enough of these. Please keep sending them in. It’d be absolutely brilliant to get a whole load of them to read out or to hear your voices on our 100th episode.

                         My guest this week has been on the comedy circuit for over 15 years, and he’s part of Abnormally Funny disability comedy troupe, which I have seen lots of times. He’s described in reviews as an old-fashioned gag merchant, which I think just means he tells a lot of jokes in his act:

[Clip]

DON-               Ultimately my comedy is about celebrating diversity. I think we should celebrate it wherever we can, whether it’s Black History Month, Dyspraxia Awareness Week, or even National ADHD Minute [laughter].  

[End of clip]

EMMA-           Don Biswas. Hi Don.

DON-               Hi, there. Thanks for having us on.

EMMA-           Oh, thanks so much for coming in, thank you. So, let’s talk about why you fit a disability and mental health podcast. You’re dyspraxic, yes?

DON-               Yes, 100%.

EMMA-           You have ADHD. And you’re autistic as well?

DON-               Yes, I am, yeah.

EMMA-           How do they inform your comedy?

DON-               It’s interesting. The way I got diagnosed is I got sacked from a couple of jobs, and it’s about the same time I started comedy, age 24, and I had a bit of a breakdown. And so it’s given me an outsider perspective looking at it. Because I’ve never, since then I’ve never worked a high pressurised job, so it’s given me a get out of jail free card out of the rat race.

EMMA-           [Laughs] So, you said you were sacked from quite a few jobs. Why?

DON-               I was working as an admin assistant and I was just too slow, that's just it. I couldn’t multitask, being dyspraxic.

EMMA-           What does being dyspraxic mean? Like, why does that make you too slow?

DON-               I’m extremely disorganised. I was working in a post room at that time, one of the jobs I was doing was the post, and it just took me ages just to put stamps onto letters. I can’t explain it, but it’s just the lack of multitasking; I couldn’t do several jobs at once.

EMMA-           Right okay. And it’s coordination, isn’t it, and processing and stuff like that as well?

DON-               Yes, 100%. All that mixed in is not great for an admin job.

EMMA-           So, you were diagnosed as an adult. So, other than work, what was life like for as a child and a young person who was in a family with Indian parents and not diagnosed but had all these, sort of, neurodiverse qualities?

DON-               I think neurodiversity is at the forefront now, but I think we need to hear more voices coming from an ethnic background. And for me it was a one size fits all parenting policy, coming from a middle class Indian family, which is to do everything you could to make sure that your children get graduate jobs, lawyers, doctors and accountants. And being neurodiverse it was hidden difficulties, so as far as my parents were concerned there was nothing wrong with me if they couldn’t see it. So, being dyspraxic they didn’t see someone who was disorganised, they just thought someone who gave up too easily and came across as lazy.

EMMA-           Were they quite hard on you?

DON-               Yes they were, because they couldn’t see it. They just thought it was someone who didn’t really care about his studies, just careless. I used to lose stuff all the time so they just thought, compared to my sisters, that I didn’t really care about schoolwork or anything.

EMMA-           But you talk in your act about a dyspraxic walk. First of all what does that look like? And how did they not see that?

DON-               Well, I do a joke in my set that you couldn’t tell I had dyspraxia when I was younger because I was a child of the mid-90s, and then I do a walk which is exactly like the Oasis walk, Noel and Liam Gallagher.

EMMA-           Tell me about that because I can’t see. I know Oasis but I don’t know the Oasis walk.

DON-               It’s just walking like a rude boy really. My legs are a bit out, walking like a wide boy. Like, when I met one of my mates at university he thought I was trying to be a gangster the way I walked.

EMMA-           But you’re actually just trying to keep your balance and not fall over?

DON-               Yeah.

EMMA-           And did you get made fun of?

DON-               Yes, I got made fun of loads for my walk, and just the fact that I wasn’t with it half the time. Being on the spectrum I was quite gullible so I fell for people’s pranks quite easily, so yeah.

EMMA-           You said you had a breakdown in your early 20s. What led to that and what happened?

DON-               I got sacked from my admin assistant job, and one of the reasons why that was was because there was a lot of work for me, and I’m thinking I’ve just graduated from university, how can I not hold down a job that only pays 13 grand. Which was a lot back in 2017 I guess. And yeah, it all went to me, I can’t carry on with this job, I can’t complete it to the best of my ability. And after I left that job that’s when the diagnosis came to a head and my parents took me to therapy.

EMMA-           Okay, so you were overwhelmed I guess because there were quite high expectations for you. You went into the mental health system I guess, is that how you got diagnosed?

DON-               Yes. First of all my mum had a bit of money behind her, so I was lucky in that respect, so I went to The Priory.

EMMA-           Right, so you went to fancy rehab.

DON-               Yes, I did. That was only for day treatments. I went to my local GP as well. So, in that respect, compared to other people, I was extremely lucky and privileged. And looking at my childhood history, I couldn’t make friends, they said I might have a term we no longer use called Asperger’s; we use ASD. That’s what the doctors said I might have, as well as dyspraxia.

EMMA-           So, Don, after diagnosis things started to change for you and you started comedy. How did you go from diagnosis and jobs that were overwhelming you into stand-up comedy.

DON-               As someone with coordination difficulties the way I say I started comedy is I fell into it accidentally.

EMMA-           [Laughs]

DON-               That’s one of my jokes. No, I went to an open mic night with my sister, and her boss was performing as a bet, and I thought I could do that. I wrote a few jokes at university, and I just went on from there. By the time my second or third gig came around I was unemployed, so I had a lot of spare time, so I just kept going.

EMMA-           And does comedy suit you then? Like, no other job suited you before. Does comedy suit you as a job?

DON-               It does now because actually I make a joke, I lost my job as admin assistant and now I’ve been doing comedy and I tell you what I’ve been up to, I’ve been updating my website, applying for gigs, doing my social media, it turns out when I started comedy what I’ve become is an admin assistant again.

EMMA-           [Laughs] but you can do it on your own time this time.

DON-               Yes, I can do it on my own time, and I’ve got wonderful agents to help me book gigs and give me a bit more direction, so that’s helped loads.

EMMA-           And what about the on stage bit?

DON-               Well, I didn’t get diagnosed with mild Asperger’s until 2008, so there were a lot of promoters that thought there might be something wrong with me with my weird stage presence. So, it’s taken me a long time to get the stage presence right, look people in the eye, make sure I don’t move about a lot.

EMMA-           You’ve pursued it over 15 years, it’s obviously something that you love.

DON-               Yeah, I do it for the love of it. Again, I work in the arts so you don’t make much money from it, but I just kept going.

EMMA-           And what do you love about it?

DON-               It’s just nice to make a roomful of strangers laugh.

EMMA-           How do you think comedy has changed over the last 15 years since you started?

DON-               I think two words: social media.

EMMA-           Right. Is that a good thing or a bad thing?

DON-               It can be a good thing and a bad thing. I think social media has made it more accessible for everyone. Beforehand there were more gatekeepers, in the sense that you needed to go to the Edinburgh Fringe Festival if you wanted to make it, get on TV and radio, which is still important, don’t get me wrong. But now social media means you can find your own audience.

EMMA-           So, have you managed to get yourself onto social media and make it work that way?

DON-               Yeah, I’m on social media. I’m still trying to figure it out. So, follow me Don Biswas Comedy on Instagram. But yeah, I’m still trying to figure out how to get that neurodiverse content out there with the politics and also posting comedy clips.

EMMA-           And what does your mum and what do your parents think of your comedy career?

DON-               Initially my mum didn’t want me to do stand-up at all. She wanted me to get a graduate job like my dad as well. But since having the breakdown, and also I have depression as well, so my mum’s just happy that I’m happy, that’s all that matters now. She’s seen me go from the worst place in my life, and the fact that I’m just happy doing comedy that makes her happy. And it’s like a get out of jail free card; she knows that I struggle to hold down a full-time regular job. And that’s one of the advantages of being neurodiverse. It’s a lot harder for middle class England to give up a job as a doctor and to become a stand-up, but because I was never in that first place it’s an advantage.

EMMA-           So, you’ve just sort of skipped the middle man.

DON-               100% yes.

EMMA-           And your mum’s stopped putting pressure on you?

DON-               Yeah. As long as I’m happy that’s all that matters.

EMMA-           And you live with your mum?

DON-               Yes, I live with my mum. The thing is my mum is in her 70s so I have to help look after her. She looks after me as well obviously with mental health problems, but yeah.

EMMA-           And what does she help you with? What do you find hard in day-to-day life?

DON-               Again, doing stand-up comedy, working in the arts you don’t make much money, so she can help me out financially if I ever struggle.

EMMA-           But what about does she help you with anything day-to-day? Does she help you organise your life and stuff?

DON-               She’s just as disorganised as me.

EMMA-           So, do you think she might be dyspraxic as well?

DON-               100% dyspraxic, definitely ADHD, 100%, that’s what I believe. She helps out with the cooking and stuff like that. But yeah, we’re both disorganised, so in fact it’s my sisters who help us out because they’re the more organised ones in the family.

EMMA-           Don Biswas, this has been an absolute pleasure.

DON-               Thank you.

EMMA-           I have a question though before we go: what was the best piece of advice another disabled person ever gave you?

DON-               That’s an interesting one. I think the best thing is Tanyalee Davis and her showing disability shame, be proud of your disability. That’s great advice: be proud of who you are.

EMMA-           So, are you proud of your disability?

DON-               Yes, I am, yes. It’s made me who I am today and it’s allowed me to have a career in comedy.

EMMA-           Don Biswas, thank you so much for coming in.

DON-               Thank you very much for having us.

EMMA-           If you like what you’ve just heard you can hear more Don Biswas on BBC Asian Network Comedy, which is available on the iPlayer from next Monday, 25th March. That is it for this episode of Access All. Thank you so much for listening. And thank you to my guests, Rachel Charlton-Dailey, Rensa Gaunt and Vicky Foxcroft, and of course Don Biswas and the amazing actress with Down’s Syndrome, Madison Tevlin from that wonderful video that we heard at the beginning of the podcast.

                         Please subscribe to us on BBC Sounds or wherever you get your podcasts. Hit that little button and we will come down onto your computer or your device every single week. And that’s it for now. Talk to you next week. Bye. 

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