Transcript: Awkward encounters of the disabled kind

This is a full transcript of Awkward encounters of the disabled kind as broadcast on 18 January presented by Kate Monaghan and Simon Minty

SIMON - Coming up...

ANNALISA [clip] - If you push your discomfort back on me because you can't handle it, then I will drop you in awkwardness and I will take pride and pleasure in doing so.

JORDAN[clip] - You're this bad kid, you're never going to do anything in life, and that is it.

TILLY [clip] - I have the muscle strength of about a new born baby.

ANNALISA [clip] - We're called The Blind Mums' Drinking Club, and if anyone ever needed a drink it's us.

[Jingle: Ouch]

SIMON- Hello, and welcome to the Brexit and Sexit podcast. No…

KATE - That's the wrong podcast.

SIMON - It is the wrong podcast.

KATE - What have you been listening to?

SIMON - This is very awkward. Welcome to BBC Ouch. I'm Simon Minty.

KATE - And I'm Kate Monaghan.

SIMON - Let's bring in the guests. When she was just 12 years old, wheelchair user, Tilly Griffiths, who has spinal muscular atrophy, was a massive fan of Disney favourite, 'High School Musical'.

KATE - [sings]

SIMON - That's Kate being incredibly awkward. So much so was Tilly a huge fan she was determined to attend university in America. Well she's there right now on Skype from Stanford University where her second term has just begun. Hi Tilly, how's life in California?

TILLY - Hello. It's pretty amazing, yeah. The sun's shining and it's a beautiful morning here, so yeah, all great.

KATE - I think that's enough from you, I say. [laughter] From this January in London.

SIMON - I think it's fabulous.

KATE - Now, Annalisa D'Innella's rapidly decreasing eyesight has led to so many cringeworthy encounters that she's made a documentary about awkwardness for BBC Radio 4, and she's here to tell us all about it. Hi, Annalisa.

ANNALISA - Hello, it's a pleasure to be here.

KATE - And it's a pleasure to have you here. Did anything awkward happen to you on the way?

ANNALISA - No, I was really hoping it would, so I'm sorry, it was awkward of me not to have been awkward enough on the way here.

KATE - Well, we'll continue with the awkwardness fest in a bit, but please do stay with us and chip in as we go along.

SIMON - Now, confession time. When I saw autistic musician, Jordan Statham, perform his song, 'As I Am' a few years ago I got quite emotional.

KATE - Did you have a cry?

SIMON - I sort of welled up, and you don't kind of expect that at a business conference in the middle of the afternoon do you? Since then Jordan has gone from strength to strength and works as an assistant manager of the Featured Artists' Coalition which helps nurture musicians. Hi there, Jordan.

JORDAN- Hello, Simon.

SIMON - It's lovely to see you again. It's been a few years.

JORDAN- It's great to be here, almost reminiscing.

SIMON - Well, we're going to hear more about your story a little later, and we're also going to hear some of your music too which will make this sentimental old man very happy.

KATE - It sounds like a pretty good line up to me. And if you think so too, or maybe you don't, remember you can contact us by emailing [e-mail]. We're BBC Ouch on Facebook and Twitter, and please subscribe to the Ouch podcast on the BBC Sounds app.

SIMON - I love the BBC Sounds app.

KATE - It's fabulous isn't it?

SIMON - Hmm-hmm.

KATE - Right, back to you, Annalisa. You're a writer and documentary maker and your latest project for BBC Radio 4 is all about awkwardness. Let's hear a little clip.

ANNALISA [clip] - If I could give you an awkwardness zapper or give you a bit of your sight back which would you rather?

MALE - Awkwardness zapper.

ANNALISA - Really?

MALE - Yeah.

ANNALISA - Really, really?

MALE - Yeah. To be honest, my blindness has become so much part of me I think it would rather flip my head to go back to being even partially sighted, and if I could just have an awkwardness zapper that could make people understand what blindness is about, rather than being afraid of their own perceptions of blindness, I would be a very happy man.

SIMON- All disabled people have experienced more than their fair share of awkward moments. Some of your show really resonated for me. So why are you so well acquainted with it, Annalisa?

ANNALISA - Well, I think my particular condition, it's called retinitis pigmentosa, and it means that my sight sort of deteriorated over time, so for most of my life I presented as sort of able-bodied, and then more recently I presented as disabled, and actually I really, really couldn't help noticing that there was this real difference in the way strangers reacted to me when I was presenting as disabled. And I was thinking, what is it?

It's not necessarily that they would say anything, but I just was thinking there's something in the air, there's something around me that I can feel, it's like a buzzing fly and it's irritating, it's getting in my way, and I am unnerving people and I don't understand why. And I realised that the difference was awkwardness, and that actually losing my sight has of course its practical challenges. But I find the awkwardness harder to deal with than the impaired sight, definitely.

SIMON - Tension was one of the words?

ANNALISA - Yeah, tension, and there's this feeling that I am causing discomfort to these people, [laughs] despite my trying terribly hard not to. You can't help just becoming aware of this slight difference in the way you're perceived.

SIMON - That awkwardness can be quite pleasurable sometimes. [laughter]

KATE - What do you mean, Simon?

SIMON - Can you have fun with that?

ANNALISA - You absolutely can and should, and actually this documentary genuinely… I started off making this documentary because I thought wouldn't it be interesting to just use a bit of logic and try and assemble this kind of awkwardness busting toolkit so that I can like, defuse awkwardness in any given situation and expel it from my life and make it go away and just swan around like a normal person.

And as I was making the documentary I realised more keenly than ever that actually it is really important, it is a powerful political act to make people feel awkward and that I should take pride and pleasure in doing so.

SIMON - And…

JORDAN- Go on.

KATE - No, go on.

SIMON - No, seriously.

KATE - Can you give us some examples of the awkwardness that led you to create this documentary?

ANNALISA - Well there's a question which I really love asking people, which is, "What's the most awkward thing that's ever happened to you?" And the thing is, when you ask a disabled person that question, like I can give you examples of stupid things I've done because I can't see, like making other people feel very awkward, like fondling the fabric on a real woman's skirt in the ladieswear department of M&S. [laughs]

But that's not really what I'm getting at, I'm getting much more at the fact that people who encounter a visually impaired person might not understand what the rules of the given situation are, and therefore feel slightly panicked. And as the person with the disability you pick up on that, you can't not. And that's what is of more interest to me specifically.

But what I found asking all my friends, you know, "What's the most awkward thing that's ever happened to you?" is that the answers fell into two very distinct categories. The first was inadvertent public masturbation, and the second was being perceived to be inconsiderate towards a disabled person.

SIMON - Wow.

ANNALISA - So I think what's really interesting about that is the social norm around disability is to be considerate, and I think a lot of that tension that I noticed was that people were trying to be considerate and they weren't sure how, and therefore they were feeling uncomfortable because they didn't understand.

SIMON - Was there a period of, what might be called shame, when you, maybe when you were becoming disabled, that you had to navigate that until you come out the other side? Is that part of this as well?

ANNALISA - Yeah, absolutely. I think that if you are feeling shame, if you are internalising that ableism around you then you are much more willing on an unconscious level to carry other people's awkwardness for them, and I think that the really important lesson I learnt was just that sort of stopping and short-circuiting that almost automatic self-apology, and saying, "Actually, that's your awkwardness. That's yours. You can carry that, I'm not carrying that for you."

SIMON - Which can create its own awkwardness in itself though, it's a double, but…

KATE - Yeah, I mean apologising is a really easy way out of a situation isn't it, but you take the problem on yourself as a disabled person for creating a situation that you haven't created. Or just by being in you are creating a problem, and to stop that automatic barrier of saying, or that automatic response of, "Sorry," I guess.

ANNALISA - Yes, I think we're socialised in many ways. I mean, as a woman I think I've been socialised to be agreeable.

KATE - Yes.

ANNALISA - And to make myself smaller. And I think as disabled people it's very easy to go through your entire life automatically sort of adapting to situations and protecting other people from their emotions.

KATE - In what way do you think awkwardness is a political…? You said it's a political thing. How?

ANNALISA - Well, because if you think there was a time when men felt awkward having women in the workplace, white people felt awkward having to sit next to black people on buses in racially segregated America. You know, if you are made to feel awkward by a situation you don't understand what does that say about you and what does it say about the work perhaps you need to do?

SIMON - So I'm sitting in the theatre and there's the empty space and then someone comes and sits next to me, and for a moment I think I wonder what's in their head, because they're now sitting next to a very short person whose legs are sticking out. And, you know, 99 times out of 100 there's nothing that happens, and I certainly don't start talking about it, but you're right, there's kind of a weird bit going on. Jordan, do you have awkward moments?

JORDAN- Yeah. When you said awkward moments one I thought of was when I was learning to drive actually and my driving instructor, she goes, "Oh yeah, use both lanes." So a normal person, yeah okay, you can use either lane, I drove straight in the middle of both lanes and I used both lanes. [laughter] And she's looking at me like, why would you do that? You told me to use both lanes. I used both lanes.

SIMON - Now that sounds logical to me.

JORDAN- I think it's logical, you know.

KATE - I guess with an autistic diagnosis you take everything very literally and that is the result of that being taken so literally.

JORDAN- Exactly. It happens quite a lot, especially in those kind of circumstances, or someone goes to you, "Oh, do you like my hair today?" "No." [laughter] "Why did you ask?"

KATE - If you don't want to know the truth.

SIMON - Tilly? Awkward moments?

TILLY - Yes, well I was just thinking about an article that I wrote recently for the Stanford Daily, called the W Word, which basically refers to the word 'walking' and how people think that I'm going to be offended by this word. So if we're going to head to a café they say, "Oh we'll walk there," but instead of using that word, walk, they will scramble through their brain for any alternative that they can possibly think of in fear that I'm going to be offended by this W word.

So we'll roll, we'll wheel, whatever they can think of really. You know, walking is a word. I'll say, "Oh, I'm going to walk over there. I'll stand here and wait for you," you know, I have no problem with that kind of thing, but it's just an interesting thing that the actual fear of being awkward creates the awkwardness.

ANNALISA - One of the things that I discovered in making the documentary was in the 1970s sociologists came up with this thing called a breaching experiment and it was a way of trying to discover what the social norms are that we live by that are sort of unspoken. It's like an invisible framework of rules. And with the breaching experiments the sociology students would go out into the world and purposely try…

SIMON - I love this.

ANNALISA - So they'd go into a supermarket and try and barter for a fixed price item, or they would say, "Hello" at the end of a sentence. Or they would go into an almost empty tube carriage and sit right next to the only person in the tube carriage. And these breaching experiments were really important because they made people understand that awkwardness is generated by situations in which we don't understand what the rules are.

And so for example your walking article is really interesting because what you were essentially doing was that it's okay to use that word, these are the rules. And actually it's an incredibly useful tip to say, in those situations where you feel like awkwardness could be generated, the quickest and easiest way to dissipate that tension is to just explain the rules.

KATE - So what are the rules for you then in your situation? What do you think those rules are?

ANNALISA - So I came up with three basic rules making the documentary. One was explain the rules. The second one was break the silence, and the third one was be prepared to be wrong. And I found that those were just three really useful guidelines for any awkward situations. You know, don't be scared to say, "I'm really sorry, I think I might have misspoken or said something careless."

SIMON - And that's perfectly normally and okay. And it's also about intention about where someone's coming from.

ANNALISA - Exactly. Exactly, and I think silence breeds awkwardness, and breaking that silence is so important, and even if you do so in a less imperfect way at least you've tried.

JORDAN- What was the first one again?

ANNALISA - The first one is explain the rules. So for example with me, you know, the other day I was in a really dark restaurant with a bunch of friends and someone I didn't know very well needed to guide me through that restaurant, and I just said to him, "Stick your elbow out, I'm going to grab you. Tell me if there's a step." And he just calmed down immediately, he said, "Oh, I can do this. It's fine."

KATE - So the rules differ then I guess in different situations, so there isn't like a rule book that you want people to stick to.

ANNALISA - No, no. I mean, for example one of the things I talk about is that we've all been on both ends of the awkwardness seesaw, like I am really awkward in many situations, I am no saint, I get things wrong all the time. So I'm not in a position to judge people who are awkward around my blindness, but for example, I listen a lot to a podcast called the 'Griefcast' and we feature Cariad Lloyd, the host of 'Griefcast' and I think that the simple phrase, "I'm sorry for your loss" has broken so many awkward silences over time and it's incredibly useful. And it's quite a useful little rule to go by. Like if you don't know what to say in that sort of situation, say, "I'm sorry for your loss."

SIMON - And that's the bit, is when you carry it for the next week, month, however long that may be. I don't know whether we've got time, I'm curious, I'm thinking of visible and non visible. I don't know if there's something in that as well, because if you suddenly tell someone and they don't know this is coming, that must create a level of awkwardness, whereas they're already awkward with me. It's already started.

KATE - Yeah, you get the awkwardness straight away.

SIMON - Maybe they avoid me even in the first place. They chat to you guys and they go, "Ah!"

ANNALISA - Yeah.

KATE - I guess because you could choose to use your cane or not? Does that make a difference to how people react to you?

ANNALISA - I think so, I think so, and it's not like I was hiding my disability at all, it's just that I had enough sight to be functional. Now I have 5% it's not very functional. So yes, there are times when I don't use my cane. And I think my eyes confuse me, [laughs] so of course they're going to confuse everyone else around me. So I think I have obviously found, and had to find strategies to explain myself, because I am confusing.

KATE - So do you find since you've made the documentary you are better around awkwardness? Has it made a difference? Or do you feel like you're actually pretty much the same, but you understand it?

ANNALISA - I actually think the toolkit has come in handy. I can now diffuse tension when I need to, but the difference now is that it's not an unconscious habit that I will automatically do, it's something that I choose to do in my control. So I will look after you as someone who doesn't know me and suddenly has to do with my strange blindness. I will look after you, absolutely, but if you choose ableism over awkwardness, like if you push your discomfort back on me because you can't handle it then I will drop you in awkwardness and I will take pride and pleasure in doing so.

SIMON - You're also a mum of two. You run a regular meet-up called The Blind Mums' Drinking Club.

ANNALISA - Yes, I do! Yes.

KATE - Can I just say, what was actually really awkward, when Annalisa arrived today was that she noticed that I am wearing a jumpsuit from Marks and Spencer's kid's range, because her daughter has the same one. So that was pretty awkward. I was like, oh…

ANNALISA - And then you started singing 'High School Musical' and it all just got a bit surreal. It's not awkward at all, it's such a compliment. I was so jealous of my nine year old for having such a cool outfit.

KATE - Thank you very much. Thank you.

SIMON - Every month it's awkward for me, I tell you. [laughter]

KATE - What's it like being a blind mum then?

SIMON - Oh, and Blind Mums' Drinking Club?

KATE - Oh, sorry.

ANNALISA - Right, well shout out to Blind Mums' Drinking Club. If you are visually impaired or blind and you care for a child and you want to join please get in touch with Ouch, because it's a very cool thing. I just found it quite stressful when my toddler was a toddler, he's not anymore, and I just thought there must be other people out there dealing with this stuff and we should all go for a drink.

KATE - So do you physically go for a drink?

ANNALISA - Yes, absolutely. And I rang up the venue where we meet, because we use a private function room upstairs, and I rang up the venue and they were going to charge us and I said, "Look, we're called The Blind Mums' Drinking Club…"

SIMON - Oh, awkward. Well done.

ANNALISA - "And if anyone ever needed a drink it's us, so can we have the room for free please?" And they said yes.

SIMON - Emma, our producer, is a blind mum as well, and occasionally I see her posts and you kind of go, this is hard work, this is quite a challenge. I mean, do you get the support, the empathy? Is that the joy of the club?

ANNALISA - Yeah, yeah, and a lot of them are blinder than I am, so I'm a disciple, I'm a huge admirer, they help me. I mean, they sometimes tell me I'm not very good at being blind and that's true, I'm not, very clearly. [laughs] But no, it's a wonderful support. It's fun, yeah.

KATE - The programme, 'Annalisa is Awkward' goes out on BBC Radio 4 at 11 am on 18th January and will be available on the BBC Sounds app…

SIMON - BBC Sounds app.

KATE - …for 30 days afterwards.

SIMON - It's a cracking listen, definitely.

KATE - Now, Tilly Griffiths was just 12 years old when she first saw Disney blockbuster, 'High School Musical' and decided that the US was where she wanted to study. Not an easy thing to make happen for anybody attending a state school in the Midlands, but Tilly had the added fun of arranging 24 hour PA support, accessible accommodation and a US healthcare plan which could cope with her complex health needs related to spinal muscular atrophy, or SMA. What a woman.

And she's here with us now on Skype from California, where her second term at Stanford is about to start. Tell me what are your kind of needs and the complexity of your situation moving out there because of your SMA?

TILLY - Okay, so generally from an SMA point of view I have the muscle strength of about a new born baby, so I rely on support with all physical aspects of day to day life, and I also have an overnight ventilator to support my breathing and lots of different pieces of respiratory equipment to try and keep me fit and healthy throughout day to day life.

So obviously there was a lot to kind of consider when I first started thinking about studying in the US, and for quite a while when I first started putting this idea out there people would literally laugh in my face, because it was such a ridiculously huge task to take on, and people just quite simply thought it was impossible. So it's definitely been a long journey, and I was about 12 when I said this is what I'm going to do, and since then it's been non stop to make it happen and I can't believe I'm now finally here in my second term already.

SIMON - What are you studying?

TILLY - In the US we don't have to decide what we study until the second year, so at the minute I'm definitely taking the opportunity just to do a bit of everything, from literature and philosophy to computer science and health policy. So I'm very much making the most of that chance to really find my passion.

KATE - Okay, I mean that's all good, but let's get back to the important thing. What was it in 'High School Musical' that made you want to study in America?

TILLY - Like every young child I loved 'High School Musical'. I think what particularly appealed to me was that as I was going through school I was struggling more and more with my relationships with my peers, with friendships. I was becoming more and more distant because my peers were going out to the park and then hanging out and whatever.

And they were just things that I couldn't physically participate in, so that distance grew greater and greater and I became almost isolated really. I decided that instead of having that as a negative I could use it as a positive and use that time that I wasn't spending hanging out or whatever to really make something happen.

And I think 'High School Musical' particularly fed into that because to my ten year old self the US came across as such a welcoming and open place where I felt that I would be accepted. It'll be a TV thing or whatever, but that really resonated with me and really inspired me to make this happen.

SIMON - We have a running debate on this show when we have an American connection about, I don't know whether America's better for wheelchair users or the UK. I mean, how are you finding it on a practical level? Do you feel welcomed?

TILLY - Yeah, on a social level definitely I've got some great friendships here. I live in a dorm so I'm very much part of that community. Physically and kind of practically all the access is amazing. I find in the US that accessibility is not an option, it has to be there in some form or another, which means that I am able to, whatever the activity is that my friends are doing, I am able to participate in some way. So there's definitely not that same isolation that I have experienced in the past. So I'm having a great time, yeah.

KATE - But I can't imagine what it must have been like for that first time when you said goodbye to your parents when you left for Stanford. I mean I guess it's hard enough for most parents saying goodbye to their kids when they're an hour away in the UK, but to have to say goodbye to you and fly away and your needs I guess are so much higher than a regular person starting university would be. What was that like for you, but also for your parents?

TILLY - Like you say, it's the same for every parent. Because I have an older sister and my mum felt the same when she went away to university at Cambridge which was a couple of hour's drive. But like you say, I have relied on the support of my parents for 18, nearly 19 years now and we have become extremely close as a result of that. And so the shock of that day when she finally got back on the plane and went back to the UK, it was a big deal and I think that's not something to kind of brush over, it was a big challenge for me and probably one of the most shocking things that's happened to me in quite a while.

KATE - Yes, did you just want to say, "Come back, Mum"?

TILLY - Absolutely, I was like, "No, it's too soon, come back," but it's what every student is going through to some degree, more or less for some people. But I have amazing support here and all the people were are going through those emotions at exactly the same time so I felt very supported. And if I'd have to leave my mum and go anywhere this is the place for me to go.

SIMON - You're at an Ivy League university in California and you've got cheerleaders and baseball games and frat houses and parties all the time presumably?

TILLY - Oh yeah, we had a pool party. We had a big Halloween party, we have, like you say, frat parties. We've been to the big football games. It's everything that you could ever dream that an American college would be.

SIMON - And the weather? Does that help with SMA? Is that a bit of a cliché?

TILLY - Absolutely. That was the big thing before I was coming. I would say to people that the climate was really important because in the UK I can't go outside for extended periods of time for much of the year because my hands will literally freeze and I can't drive my chair. And so I say to people the sunshine's actually really, really beneficial to me getting the most out of my university experience because I can do it 100% of the time, not just 30%. So that's definitely important.

KATE - I think that's a reason I should go out there.

SIMON - Yeah, I'm going to start using that. Thanks a lot for that one. Top tip.

KATE - So I have always been worried about going over to America, simply because of the healthcare system and the horror stories you hear of the cost of people getting hospitalised and the higher chance of somebody with a disability needing to be hospitalised I guess. How the heck have you sorted out all your healthcare and everything?

SIMON - I know disabled people who have moved just in the UK and just the care package is massive to do that. How do you do it when you go to the USA? Exactly.

TILLY - Okay, so the first thing to kind of make the distinction between is my care package versus my health insurance, because my health insurance to start with, it kind of comes through the university policy, and so I'm completely covered. It's paid for by my university financial package, I'm completely covered, everything's great and it's all paid for, so I'm very, very lucky.

KATE - Wow.

TILLY - And I receive excellent healthcare here from Stanford Hospital. And then from a care package point of view, this was a huge thing in the very beginning because I knew that I would need 24/7 care to make this happen that wasn't really an option. So back, pretty much in 2015 I approached the NHS and said, "This is what I want to do."

And so it probably took the three years to try and work with the NHS to figure out a way we can make this happen so that I would be safe and that the NHS money would be spent safely. And so it was a really thorough process, a lot of back and forth, but I've got a 24/7 personal health budget to use during my studies in the US.

KATE - So do you have American carers? Have you taken your regular British carers out with you? Do they come to all the parties with you?

TILLY - Okay, so I use my personal health budget from the NHS to employ personal assistants from an agency in California itself. That's working out really well, and obviously like anyone in the UK who's used PAs will know it's an ongoing challenge and to have that perfect team is something we can only ever dream about. But, you know, it's working well, I'm living independently, and it's all great.

The PAs in the day, they all support me with all kind of personal care tasks. Getting ready, that kind of thing, and then they will be available nearby should I run into any trouble throughout the day or need to use the bathroom or anything like that. But also I can go off with friends or to a party or whatever so I still have that independence and can be just Tilly rather than Tilly plus one.

KATE - Parties and night carers, that's not… Because we've spoken to many people who have struggled with getting care for evenings and late nights and stuff. That's not a problem out in California?

TILLY - I have a waking night person, so they come in at seven pm and stay till 7 am, so whether I go to bed at ten o'clock or whether I'm out till two o'clock somebody will be here to support me. So it really works well.

SIMON - Whenever I've been to American parties they start really early and finish really early.

KATE - Really?

SIMON - Oh, I'm generalising, but no we would go to these parties thinking oh this is going to be wild, and then everyone stops. At half past nine they all go home.

KATE - Is that what it's like in Stanford?

TILLY - Yeah, it's interesting because obviously the drinking age is 21. I choose not to drink anyway, but a lot of the 18, 19 year olds here are still kind of figuring out alcohol for the first time. So the party scene is definitely different to how it is in the UK. But also it's great for me because I choose not to drink.

Because the drinking age is 21 there are other things going on. Everything doesn't revolve around partying and drinking and there's lots of different activities that I can take part in on evenings and weekends and whatever that really suit my interests so it's good. It's the best of both worlds.

SIMON - I'm kind of really curious about your other things. But hang on, let's go back. So application process, how was the application process and how do you think you met the criteria?

TILLY - Okay, so I knew pretty much as soon as I decided that this was what I was going to do that it was going to be a tall order, you know. I needed top AA star grades and that really gave me the drive to really focus throughout my GCSEs. And when I did get my grades at the end I knew that I'd done well enough to go forward with this and so I applied for the Sutton Trust US Programme which is a programme run in partnership with the Fulbright Commission for state school low income students who were considering studying in the US.

So not disability specific, but kind of low income bright students. And amazingly I was accepted onto that programme and that was a huge, huge support, because they have all these different terms in the admissions process that I didn't understand and that kind of thing.

The admissions process was definitely very challenging. It was happening at the same time as A levels. There was a lot of writing of admissions tests and that kind of thing, but it all worked out in the end.

SIMON - The application process there seems to be a lot more holistic in approach than in the UK, and you've done all this stuff. You raised £5m for charity, you volunteered for wheelchair charity, Caudwell Children, you've done a lot of stuff. Was this taken into account do you think? Did this win?

TILLY - Yeah, I think having used by UCAS in the UK and the US admissions process, the US is definitely a much more holistic approach. I find they're more interested in learning about the whole person, rather than just grades plus a little bit extra. So all the things that I've been involved in, the charities like Caudwell Children from a very young age from fundraising and campaigning and giving speeches and that kind of thing.

So that definitely all contributed to my application and to be involved in the charities and that kind of thing has helped to shape who I am and really driven me towards different goals.

KATE - I feel like you're being very… you're underselling yourself here, because I mean you didn't just like raise a bit of money for charity, you raised like £5m. I can't imagine many people applying for college in America have raised £5m.

SIMON - You made a collage that was… It was bid for and was more expensive than a Picasso original. What's going on?

TILLY - Yeah, that was the first piece of artwork that we did with Caudwell Children using the butterfly motif and it was auctioned at that annual ball. And yeah, I think that one went for something like £360,000 which was just beyond… We'd hoped that it would raise £20,000 which is the cost of one electric wheelchair like mine for one other child which would have been incredible, so to think that we've now raised over £5m and helped all those other young people using powered wheelchairs, that was the real dream, so it's amazing that that's happened.

SIMON - Four years left of uni, you're talking about communications maybe. What are your longer term plans?

TILLY - I definitely really enjoy writing and so I want to use that in some way, and also I'm in the process of founding a charity called Now or Never. It's inspired by my time on Caudwell Children's Destination Dreams, which is an annual trip to Florida for children with life limiting conditions. But as that only happens once a year, Now or Never will provide trips for children at the time that they find out that there's really not that much time left for them. And so I want to bring them out to California and make those special memories. So that's my ultimate goal.

KATE - Well I have to say, I am thoroughly jealous of you and your college experience and it is much more glamorous than my time at Bristol University.

SIMON - I'm thoroughly embarrassed as to how much you've done in your life, Tilly.

KATE - Oh, I know.

SIMON - How driven are you?

TILLY - Well, it's been all thanks to, you know, I've received some amazing support from countless different organisations and people over the years, and that's all contributed to kind of making this American dream a reality. So I'm loving every second.

KATE - Thank you, Tilly. Please do stay with us and feel free to chip in at any point. Annalisa, Jordan, do you think if your life was looked at in a holistic fashion do you think you've be getting into Stanford anytime soon?

JORDAN- [laughs] No way. Just listening to that and I'm sitting here like I feel pumped up, I'm inspired to go and take on the world.

ANNALISA - Yeah, me too. Yeah, extraordinary. I mean, I with barely any impairment at all really struggled with the university. [laughs] So, I'm really, really impressed.

SIMON - I suspect the more they'd find out about me the less likely I'd be able to get in. Is that one of the…? [laughter] Just keep it very narrow.

KATE - Exactly. Now, it's worth saying that if you do want to hear more stories like Tilly's there are over 100 episodes of the Ouch podcast available on the BBC Stories app.

SIMON - The BBC sounds app.

KATE - Oh, Sounds app. I said stories.

SIMON - We love the BBC Sounds app.

KATE - Sorry.

SIMON - Now, autistic artist, Jordan Statham, performed at an event I attended way back in 2011 when he was just 17?

JORDAN- 17. Jeez, yeah.

SIMON - His song, 'As I Am' really stuck with me, so much so that I was keen to know what he's been up to since, and Jordan is with us now for a chat. But let's first hear a clip by Jordan and his best friend, Oscar Bell. [laughter] We don't have a… I have the song on my phone. Is anyone allowed to hear it? Right. We're getting into playlists. 'As I Am' is what I call it… [song plays]

KATE - It's a bit of a Stormzy vibe.

JORDAN- Being compared to Stormzy, that's good.

SIMON - Whoa, whoa, this is the beautiful bit…

JORDAN- Sing along, Simon.

SIMON - [sings] We could do that for an hour. Let's put it on repeat.

KATE - If you haven't been compared to Stormzy, who have you been compared to then? Because I am getting a Stormzy vibe there.

JORDAN- I tell you the one I get is Professor Green and it's like, "Oh, you look a bit like him as well."

KATE - That's true, with the glasses.

SIMON - You do look a bit like Professor Green.

KATE - Yeah, with the hair.

JORDAN- To be fair I was quite inspired by Professor Green so I kind of get that one, but Stormzy? I don't know.

KATE - From 'Gang Signs & Prayer' though, do you not think?

JORDAN- I love that album, it's one of my favourite albums of all time, for sure. But yeah, kind of, maybe.

SIMON - Kate is trying to be so hip. [laughter]

JORDAN- I can tell, I can tell. Music knowledge.

KATE - Hello!

SIMON - I'm nervous of this question because obviously I've got my own interpretation, but what is 'As I Am'? What's that song about?

JORDAN- Yeah, to be fair, the song was all about me just embracing who I am and what I stand for and sharing with other people that they can just be themselves. And forget what anyone else thinks, it's more to do with my autism and kind of right, this is who I am, this is what I'm about. This is how I express myself, not in a negative way, but more in a positive way.

SIMON - It kind of relates back to our awkwardness, it's kind of this is me, this is how I present myself.

ANNALISA - Well quite, and I think this is a theme, people… It just feels like a theme that's being explored more and more, like when you think of 'The Greatest Showman'.

KATE - I was going to say, it's very 'Greatest Showman', this is me-esque isn't it?

ANNALISA - Yeah.

KATE - So what did it mean for you, Simon?

SIMON - Well, it's quite a complex thing. No, it was exactly that, obviously this is how I am and this is how I present, but I also thought it was about a relationship, it's about being in a relationship and I want to be with you and I know relationships are about compromise, but there are some fundamentals that I can't change, this is how it is. And you see, I'm getting emotional thinking about it.

KATE - Yeah, because I feel like you're drawing from your well of personal experiences there, Simon. [laughter]

ANNALISA - It's a really, really important thing I think when you put it in the context of a relationship, is this idea of… You talked about holistic approaches and there's more holistic love, it's like I don't love you despite your disability, I love you and your disability, and I think that is something that families, parents, spouses, couples, it's not something that's ever really been talked about that openly, I don't think?

SIMON - And even non disabled, it is just this bit of we all come with our own baggage and you've got to kind of accept that and absorb that, whether it's impairment, disability, or whether it's just who you are. Are we over thinking it, Jordan? It's just a song, come on. [laughs]

JORDAN- No, you know what? It has multiple interpretations, because again, it comes from multiple experiences, it wasn't just kind of this is one experience. And you kind of hit the nail on the head as well, with lots of different relationships that kind of happen and kind of explaining to someone that doesn't understand emotion so how can I get this out there? How can I say these words without saying these words?

KATE - So what is it that's happened in your life that's led you to a point where you wanted to write a song like that? Tell us about growing up autistic.

JORDAN- Yeah, I think it was always being misunderstood. Until I got that kind of right support in place I was just very misunderstood, labelled this bad child. I was told at school, "We're not trained to deal with kids like you." These are the kind of things I used to get.

KATE - Kids like you, did that mean autistic children? Did they know you were autistic?

JORDAN- Well, this is it. At the time I wasn't diagnosed as autistic, but kind of psychiatrists were coming in, bits and bobs, and then it was like the behavioural team that used to I suppose deal with me as such, and they would say, "Oh yeah, we're not trained to deal with kids like you." So yeah, I suppose, representing to my autism they knew that that's the path that it was going down, that there was no formal diagnosis at the time, but…

KATE - So what was school like?

JORDAN- School was horrendous. I actually left school with not a single qualification to my name, no GCSEs, I was kicked out, "You're this bad kid, you're never going to do anything in life," and that is it, on your way. On to the next step.

KATE - How were you bad?

JORDAN- How was I bad? To be honest it was more in the classroom, the change of environment. An example would be if a supply teacher came in and said, "Right class, we're doing this today." "Hold on, sorry Sir, Miss. Last lesson, Sir said we're doing this." "No, but I'm saying we're doing this." "No, no, we're doing this."

And then it would lead to quite a confrontation and escalate and escalate and escalate, because I'm so fixated on, "No, this is what I've been told that this is happening, this is what I'm prepared to happen and now you're telling me that something else is happening."

Just dealing with that used to be extremely difficult. If a teacher tried to speak to me or shout at me for doing something, "Why are you wearing those trousers?" "I don't like the feel of those trousers, I'm wearing these trousers." "Where's your letter?" "I don't have a letter, this is what I'm wearing." Like, I said it how it was. I did things, I suppose it was all around at the time but no one was really aware of why I did these things. "Why are you wearing trainers?" "I can't stand shoes." Like shoes, I used to hate the feel of leather shoes.

KATE - So when did your autism get picked up?

JORDAN- Picked up? I think it was initially picked up when I was in Year 6, that kind of transitional period from primary to secondary. And at the time there wasn't much awareness of it, and my mum was really quite concerned, they said, "Oh, he needs to go and see somebody." She just thought they were trying to palm me off to the next thing. "Ah no, he's not like that." So we didn't really revaluate it until year 7 to year 9 where again it was picked up on by school, like something's not quite right here.

SIMON - And sort of the day you left school what happened? What did you do?

JORDAN- Well, we went through a massive… Well my mum, you know, she's my life saver, she went through a massive fight to try and get this diagnosis, because once I get a diagnosis obviously that means a statement, a statement means funding, and I got introduced to a team called Autism Outreach who worked with me on a one to one level, reintegrating me back into kind of educational stuff. So we did music, and at school I was never allowed to do music, because, "You do not play a musical instrument." So I was like, "Okay, but I want to learn one, like tell me." "No, you don't play music."

So I worked with Autism Outreach on various random activities, so we did like a music class, we did tree surgery, learning about actually knowing that you're learning. And then from that I then got channelled into a special school, a special college.

KATE - And what was that like?

JORDAN- Now, that was different, that was the most different thing I've ever been in my life. I talk about getting the right support, and the balance there, because it was in Birmingham so I'm originally from Loughborough, Birmingham was a bit of a way, I'd never been to Birmingham in my life, it was like okay. So there's this college in Birmingham, they do all these kind of crafts, it's a different way of learning, so they do glass blowing and glass cutting, glass engraving. I'm like, I'm not too sure, do I want to be doing that? I want to do music.

So okay, I went there, and you have something called shared lives providers who are people that you live with like house parents, they look after you while you're there. So I met them and when I first met them, they were like, "Oh yes, Alex, he plays in a band." And I was like, "He plays in a band! What does he play and who's the band?" So it turns out his band was a massive global success at one point and he kind of got me into learning guitar.

KATE - Who is it? Who's the band?

JORDAN- Ned's Atomic Dustbin, I'm not sure any of you will know them.

SIMON - Oh, I do know the name.

JORDAN- It was very small kind of groups, like no more than three to four people per class. But for me, what I kind of learnt from it is more the social surroundings around this class, because within my second year at this college I was able to be channelled into a mainstream college as well alongside and kind of merge the two together.

But again, all that came from the correct support and having that right balance of learning, you know, I've got to go to this place and I've got to pick up on my… What was the name? Speech and language therapist, that was the session that I had the best kind of time, the best things that I learnt. Eye contact. Different meanings to different words. What they might use. Social cues. All these little things. Facial expressions; this means this. Almost like storing this knowledge in my head.

SIMON - And kind of going back to your learning the rules.

ANNALISA - Yeah, yeah. Yes, this invisible framework of rules.

JORDAN- [laughs] 100%.

KATE - Looking back, I mean, you must have a level of frustration at those years lost of people not understanding and you not having the right support?

JORDAN- Yeah, 100% it was frustration. I'm going around and I'm seeing all my friends going off and doing amazing things, going to university, and I'm saying, "I've just been kicked out of school, I've got nothing going for me at this moment in time." But I knew how smart I was, I know what my passion is, I know I can do anything if I put my mind to it. So it's more a case of right, I want to prove these people wrong. Because there were good people within schools as well.

Like the school SENCO, she tried her hardest, you know, it was so hard to try and get me through that. "He's not a bad lad. I'm telling you now, he's not bad, he wants to learn." So it was quite frustrating, but now it's like I go back to the school to see the SENCO, and I used to take her a Terry's Orange every single year.

SIMON - What is SENCO, for those that don't know?

JORDAN- I don't even know what that means.

KATE - It's Special Educational Needs Coordinator.

JORDAN- There you go. That's what it is.

KATE - So when did your music career begin? You said you were playing to Simon in a conference when you were 17?

SIMON - With non disabled Oscar who is sort of a best mate?

JORDAN- Yeah. So me and Oscar met at college, but I suppose before I got into music I'd always kind of written lyrics, just to channel, I suppose my aggression really and my frustration, and that's kind of where the song writing comes from. Normally I'd have just like a £10 microphone in my bedroom initially with a sock over it, like yeah, I'm the boy pretending to be Eminem or whoever it was I was inspired by at the time.

SIMON - I love these stories, keep going, Jordan, keep going. I love it.

JORDAN- No, but honestly, it channelled into something quite serious and I kind of spent a bit of money on a proper recording studio in my little bedroom that I used to have. And I was like, right, I'm a rapper now, I'm certified, like I am the guy. And then I was like I want to do this more often, and then we went to Kidderminster College, which is a mainstream college.

And we went there and on the first day I'm sat there, all these new things, so this was absolutely terrifying and I'd seen this guy, Oscar, and I'm like, I've seen that guy on YouTube. And I went up to him and I said, "I've seen your videos," and he's like, "Ah yeah, we're on the same course." And then from that moment onwards we clicked really well, we talked about rapping grime music, because everyone was more like into the heavy kind of bands, and I was like, "No, no, I love rap." And he was like, "Yeah, let's do something, let's incorporate both worlds." So then that's where it all started I suppose, was at college.

SIMON - You also do something called AOA. What's that?

JORDAN- Yes, AOA stands for Awareness of Autism, and that's the festival that I run to promote awareness of autism and to give people on the autistic spectrum a chance to showcase their talents in an environment where they're supported correctly. And it's not just because they're autistic they conform, it's the fact that these guys are super talented but just need the platform around them and the correct support, as I said earlier. And that's what it's all about.

KATE - And where are you working at the moment, as well as your music?

JORDAN- Yes, at the moment I am the assistant manager at the Featured Artists' Coalition, which is a UK music trade body representing over 3,000 artists, ranging from grass roots level to worldwide superstars, such as Ed O'Brien of Radiohead or Sandy Shaw etc.

SIMON - I think you've memorised that quite well.

JORDANYeah, it's taken me a while. [laughter]

KATE - I've actually got a public service announcement from Attitude is Everything, since we're on the subject of us disabled people making music.

SIMON - You bet.

KATE - Are you a musician, artist or DJ producing original music with the ambition to develop your creativity and take your project forward?

SIMON - Yes!

KATE - Do you identify as deaf or disabled, or don't identify but have a health condition or impairment that impacts your daily life?

SIMON - Yes.

KATE - If the answer to these two questions is…

SIMON - Yes.

KATE - Then this is your chance to change the music industry via music organisation, Attitude is Everything and its artist survey. They want to hear about your experiences and any barriers you face when producing music, rehearsing or playing gigs. With your input they want to support the music industry in developing accessible spaces for performing, recording, networking and pursuing a musical career. Head to attitudeiseverything.org.co.uk and click on the next stage survey to get involved. Jordan, your song, 'As I Am' will play us out in a minute.

SIMON - Brilliant.

KATE - In full, in its full glory. I mean, Simon may cry again but let's see.

SIMON - I'm putting it on a loop.

KATE - But why don't we do the end of the show bit first? Cue, Simon.

SIMON - Okay, that was quite aggressive. That's it for the January talk show. Kate and I will be back mid-February. In the meantime, stick with the Ouch podcast. There are latest episodes featuring Attitude is Everything, so that's Suzanne Bull. There's best selling Irish author, Liz Nugent, and a cohort of disabled doctors.

KATE - Bit thanks to all our guests, Annalisa D'Innella, Tilly Griffiths and Jordan Statham.

SIMON - The team were Niamh Hughes, Beth Rose and producer, Emma Tracey. The studio manager was James Birtwistle.

KATE - But let's finish the show as promised with the track, 'As I Am' by Jordan Statham and Oscar Bell. Goodbye.

SIMON - Hello.

KATE - Oh, that was awkward.

- [music] 'As I Am' by Jordan Statham and Oscar Bell