91热爆

EMMA- Aidy, you鈥檙e here to talk to me in a bit about Lewis Capaldi at Glastonbury. But seeing as I have you, you鈥檝e got Tourette鈥檚 Syndrome, so you are I think what the young people call neurospicy.聽

AIDY- Oh, spicy, neurospicy!

EMMA- Neurospicy. Do you know this word?

AIDY- I do not know this word. Educate me.

EMMA- So, it鈥檚 a word apparently the youth are using instead of neurodivergent.

AIDY- Oh, I like this.聽

EMMA- I think they just think it鈥檚 more fun. There鈥檚 something to it. it鈥檚 a bit different. It鈥檚 a bit sort of [sucks breath in]鈥�

AIDY- This reminds me of my favourite cocktail, the spicy margarita. So, you can call me neurospicy any day.

EMMA- Laughs] the neuro spicy margarita. Will you be using it going forward?聽

AIDY- Honestly, I鈥檓 replacing every spicy margarita that I ever make now with the neurospicy. It鈥檚 going to be called my neurospicy serve.聽

EMMA- Hey!

AIDY- Honestly, watch out, we鈥檙e doing the neurospicy cocktail.

EMMA- Woo!

AIDY- Love it.聽

EMMA- And are you going to use it instead of neurodivergent or do you actually use neurodivergent in your life? I mean, it鈥檚 not a word that you鈥檇 send out on the first date or whatever, is it?

AIDY- Do you know what, when people use the word neurodivergent they鈥檙e getting a bit numb and blas茅 to it now. So, I think if I walk into a room and go yes, I鈥檓 neurospicy, they鈥檒l be like, sorry, what does that mean. That鈥檚 going to bring a whole new comment. You鈥檝e started something now. Well, the Gen Z have started it, but we鈥檙e taking it. We鈥檙e taking it and we鈥檙e going with it.聽

MUSIC- Theme music.聽

EMMA- This is Access All, the 91热爆鈥檚 disability and mental health podcast. I鈥檓 Emma Tracey and I鈥檓 in London. And I鈥檓 all by myself because Nikki鈥檚 on her holidays, but that does not stop us from having a jam packed show. And I know it won鈥檛 stop you from hitting the subscribe button if you like what you hear, which of course you will.聽

Later I鈥檓 going to be finding out why so many disabled people find themselves in severely insecure work. And I鈥檒l be looking at blindness through the ages with author, Selina Mills. That is right up my street. But first:

CROWD- [Singing along to Lewis Capaldi]

EMMA- What you鈥檙e hearing of course is that viral clip from Lewis Capaldi鈥檚 set on the Pyramid stage last weekend at Glastonbury. Now, before he did that concert he was off for three weeks, and after the set he decided that he won鈥檛 be touring for the foreseeable future. And that鈥檚 to give him time to adjust to having Tourette鈥檚 Syndrome. Now, with us is another legend with Tourette鈥檚 Syndrome. He鈥檚 a TV presenter, he鈥檚 our friend of the podcast, it鈥檚 Aidy Smith. You were watching on the TV, but for those that didn鈥檛 see it or for people like me who only heard it, what was happening on stage?

AIDY- So, essentially Lewis was there, for the first few songs he was belting them out. You could tell that he had a couple of issues with his voice; his voice was a bit strained. And I think as a result of that he was getting more anxious, he was getting a bit more stressed out, and his tics were appearing a bit more 鈥� like what happens to all of us when dopamine levels in our body go up and down. When we get stressed and anxious this is just what happens. He got to his most loved, beloved song and it all just got a bit too much on the vocal side. So, he kind of ask the audience if they could step in and support. And when he wasn鈥檛 singing you could tell again his tics were coming out a bit more. But the audience were there, the audience were supporting. It was a stunning, stunning moment. I think the nation had goosebumps, the nation had tears in their eyes, because it was hundreds of thousands of people across the whole of this field in Glastonbury supporting someone who just in that moment needed a little bit of help. And it was beautiful.聽

EMMA- And do you think the crowd did the right thing? I mean, lots of disabled people on my socials are saying that the world could learn from how the audience responded. Do you think the audience did the right thing and what can we learn from it?

AIDY- I think they absolutely did. I mean, we鈥檝e got to think about this is the first time in history that on this level this much awareness has been raised for Tourette鈥檚 Syndrome via someone who has Tourette鈥檚 Syndrome. And in this moment the millions upon millions of people who this clip will have reached will see that Tourette鈥檚 isn鈥檛 a swearing condition. And so for one that immediately removes some of the stigmas. It also allows us to see that people out there understand some of the hardships of Tourette鈥檚 and they鈥檙e there to help us get through that moment. I鈥檓 quite fine to admit that I was there in tears because it felt like the audience were holding my hand in that moment as well. For Lewis in that moment it was difficult for him because he鈥檚 just had his diagnosis of Tourette鈥檚, literally.聽

EMMA- Yeah, it鈥檚 really recent. Less than a year, right?聽

AIDY- Less than a year. And if you think about it it took me 15 years to come to terms with talking about Tourette鈥檚.

EMMA- Right. So, his reaction to the diagnosis he鈥檚 always been totally honest, really open. It鈥檚 kind of remarkable, isn鈥檛 it?聽

AIDY- It is absolutely remarkable. I mean, if you think about the vast majority of people who get a diagnosis the first thing they do is hide away. As soon as we get that diagnosis we鈥檙e already at that point of being bullied for being different or weird or odd or standing out for the wrong reasons.聽

EMMA- But when he was diagnosed he was in the middle of a fly in the wall documentary, wasn鈥檛 he, so he couldn鈥檛 really hide away, could he?

AIDY- He couldn鈥檛. And I think that he just needs a bit of time to come to terms with what Tourette鈥檚 Syndrome is, how it is going to impact his life, certain changes that he made need to make. But above all else realising that it absolutely and fundamentally is his superpower as well. And if it weren鈥檛 for his Tourette鈥檚 and all of that excess energy in his body he probably wouldn鈥檛 be where he is now. Every time he sits down and puts pen to paper, creates lyrics, gets on his piano, starts belting out songs, he鈥檚 on his guitar, what he鈥檚 doing then is his superpower, it鈥檚 his passion point. And he鈥檚 an unstoppable force of nature. The only reason why on that stage his tics came out a bit more is because he鈥檇 lost his vocal cords because he鈥檇 been working so hard on things, and the anxiety and stress had peaked. But if none of those things were there in that moment he again would have just done what he always does.聽

EMMA- He鈥檇 have smashed it.

AIDY- Smashed it.聽

EMMA- Yeah. And you鈥檙e a bit of an unstoppable force of nature yourself, Aidy. So, what changes did you need to make to bring Tourette鈥檚 out as your superpower and to live alongside it like you do?

AIDY- So, I basically had to embrace it and learn how to do that. And I always say it鈥檚 about uniting with other people who are like you; whether that means people in the Tourette world or people in the neurodiversity world. It鈥檚 about figuring out what other people are doing and seeing that there are other remarkable people just like you in the world. You are not alone. Once you speak to these people you get a confidence, you get that confidence to go about your life, to do what you do. I still am on the Underground and I get people getting weird looks when I get my sniff or my cough tic that comes out in the crowded Underground. But I just look at someone and I smile. Nine times out of ten they smile back because they realise oh, okay there鈥檚 something going on here, he鈥檚 just smiled at me, I shouldn鈥檛 be afraid, he seems like a nice guy, I鈥檓 going to be polite and smile back.聽

EMMA- Right.聽

AIDY- And it鈥檚 little things like this that over time we learn. Don鈥檛 get me wrong, it鈥檚 not an easy journey.聽

EMMA- And what do you reckon would be a great use of Lewis Capaldi鈥檚 time that he鈥檚 taken away from the spotlight? What could he be doing?聽

AIDY- I think ultimately he needs to take time to just focus on his mind, his own thoughts. I think he needs to read up about Tourette鈥檚. But most importantly I think he needs to talk to other people who have Tourette鈥檚 Syndrome. After six to 12 months of having this diagnosis that鈥檚 barely any time at all. It鈥檚 about coming to terms with it and it鈥檚 about working alongside it versus it taking over your life, which always happens to us at the very beginning of our journey.

EMMA- Yeah. And you were an actor, weren鈥檛 you, when your Tourette鈥檚 Syndrome first became apparent. So, I suppose my question is for anybody who is doing something that they love and finding it really tricky because of symptoms or because of something that鈥檚 happening in their mind or body, what would be your advice for them?聽

AIDY- You鈥檝e got to fight. I was a child actor when I was a kid from the age of six. I had a really successful show. As soon as my tics came out I was cancelled overnight, because of the misconceptions and stigmas. Later on in life I thought this is my superpower, this is my dream, I鈥檓 not going to let someone rob that from me. So, I went out there and I fought relentlessly to make it happen. No commissioner would put someone with Tourette鈥檚 Syndrome into a TV show, so I funded my own TV show through branded content and I made it happen another way. That鈥檚 what we have to do: we evolve, we innovate, we鈥檙e entrepreneurs, we have these beautifully creative minds and when someone says no we find another way to do it.聽

EMMA- And that鈥檚 what he鈥檚 going to do too.聽

AIDY- That鈥檚 exactly what he鈥檚 going to do. I can鈥檛 wait until he gets back on stage. He鈥檚 going to be bigger and better than ever.聽

EMMA- Because he was a bit dejected at the end. To be fair, he apologised, he was described as looking a bit dejected. But I mean, he would be because he was in Glastonbury and his voice was going.聽

AIDY- Do you know what, if Lewis was here right now I鈥檇 say, you have absolutely nothing to apologise for. You have done so much good today. You鈥檝e always been yourself. You鈥檝e worn your feelings and your emotions on your sleeve. You鈥檙e a genuine human being. It鈥檚 time for you to take a bit of time for you. We鈥檙e here, your fans are here, we鈥檙e not going anywhere. We love you to bits. You do your babes and come back when you can.聽

EMMA- Woohoo.聽

AIDY- There you go.聽

EMMA- And just before I let you go, you have a new series of your TV show, Three Drinkers, where can we see it?聽

AIDY- the Three Drinkers in Cognac came out about a month ago on Amazon Prime, so you can watch it right now. And for the first time ever I address the fact that I鈥檝e got Tourette鈥檚 Syndrome in the TV show itself.聽

EMMA- In what context?聽

AIDY- So, I was essentially asked how I feel when I鈥檓 doing mixology, because as you know drinks is my forte, I鈥檓 all about wine, spirits, cocktails. And my response was mixology is one of my superpowers, so when I鈥檓 in the moment and when I鈥檝e got that shaker in my hand or I鈥檓 looking at those ingredients my tics completely vanish because I鈥檓 doing what I love the most.

JINGLE- Access All.聽

EMMA- Let鈥檚 talk about work now. So, whether you鈥檙e in work, whether you鈥檙e looking for work or whether, god forbid, you鈥檙e trying to sort out reasonable adjustments at work, it is always a hot topic but not always a smooth ride. Disabled people who do have a job are one and a half times more likely to be in severely insecure employment than their non-disabled peers. That鈥檚 according to thinktank The Work Foundation at Lancaster University. This means they pay unpredictable pay, no guarantee of set hours or future work, and no access to employment rights or protections. Disabled women are twice as likely to find themselves in this situation. I鈥檓 joined by freelance writer and blogger, Pippa Stacey, who tried the workplace but then turned to freelancing so that she could have more control. Hi, Pippa.聽

PIPPA- Hello. Thank you for having me.

EMMA- Pippa, you鈥檝e been managing ME since university, but you did try the workplace, didn鈥檛 you, when you first graduated. How did you find the office environment?

PIPPA- Well, it was bit of a unique role. After becoming disabled during uni it was a real scrabble post-graduation to try and find anything at all that was going to be accessible. And as this was pre-pandemic even finding working from home opportunities was like looking for a needle in a haystack. I did eventually find one where I had the opportunity to work from home, so that was a massive relief and a massive weight off my mind. But even in that environment and with employers who were probably better than most at that time I still found a lot of additional challenges with being in that structured sort of working pattern.聽

EMMA- So, what challenges are they?

PIPPA- I think the main thing for me is there wasn鈥檛 as much flexibility over my hours. And when you have a chronic illness it鈥檚 very hard to predict day to day what your symptoms are going to be like. They were understanding to an extent, but I still obviously had to be working during those classic office hours. I had to be available for regular meetings, which was challenging at that time. And if I鈥檓 honest I often found there was a lack of understanding about chronic illness and long-term illness.

EMMA- Did you have to put quite a lot of work into trying to make it work?

PIPPA- Oh my gosh, I was exhausted. Because it was my first job out of uni, and I鈥檇 really struggled to find anything at all that could possibly work, I did just have to put everything into making it work. And I managed to remain in that role for three years, and I did have a really great experience in lots of ways. But I knew that with the impact it was having on my health it just wouldn鈥檛 be sustainable long term. I just kept burning myself out over and over again. And it was that and a few other things that prompted me to start considering self-employment and whether freelance life is something that might be more accessible for me.聽

The main benefit of freelance life for me is just having that level of flexibility over my hours. I can just create my own schedule. So, I can have an idea in my head of how my week would go, but then day to day if I didn鈥檛 feel well or something had happened or I had medical appointments or medical procedures I always have the ability to tailor what my day looks like and to move things around. And it just gave me more opportunity to listen to my body and figure out how I could make work work alongside my health as well.聽

EMMA- What are the cons of being a freelancer?聽

PIPPA- It鈥檚 tough. Being a disabled freelancer is tough, even with all of the pros it鈥檚 often unpredictable, the work often feels instable, you just don鈥檛 know what鈥檚 going to come in at any given time. You don鈥檛 have things like sick leave, which is a massive con when you鈥檙e dealing with a chronic illness. There鈥檚 not annual leave. And it鈥檚 very difficult to take days off.

EMMA- Yeah. How do you manage the financial insecurities of no sick pay, no annual leave, not knowing when the next job is arriving?聽

PIPPA- It鈥檚 something I鈥檓 very much navigating at the minute. The best advice I can give to somebody in a similar boat is to take on the one-off projects when they come, but also establish some regular weekly work. So, I have regular hours in the charity sector; I work as a comms consultant for small charities so that I know I always have a set number of hours per week and I know that I鈥檒l be earning minimum this week. And that gives you some regularity in what is otherwise a very unpredictable world.

EMMA- Pippa, what changes would you like to see businesses make to ensure that the workplace is more inclusive and more secure for disabled workers?聽

PIPPA- I think a massive thing is simply having more flexible roles to apply for. So, roles where the job ad specifically advertises flexible working, reduced hours, things like job shares. Just giving people some element of choice and actually having roles to apply for is a massive thing to start with.

EMMA- Thank you so much for chatting to me about this.聽

Obviously when it comes to research we also like to offer up some solutions, so I spoke to Ben Harrison from The Work Foundation at Lancaster University, and I asked him what could be done to improve the disability insecurity gap.聽

BEN- So, I think we鈥檙e going to need to see significant reform in order to tackle this. We need to see a new employment bill that would drive up employment standards across the country for all people who find themselves in insecure work. But of course that would disproportionately benefit those with disabilities because they鈥檙e more likely to be in those kinds of jobs. We鈥檇 also like to see an extension to the right to flexible work so that that takes place on day one. That would allow those with disabilities to agree a set of arrangements with their employer from the get-go that works for them when it comes to managing their conditions. But I also think there are some more focused interventions that are likely to be required. For example, we need to see a greater investment in things like access to work and employment support for those with disabilities. And we need to make sure that any changes to things like personal independence payments or universal credit more broadly don鈥檛 end up pushing those with disabilities into just accepting any job because of the threat of sanctions, regardless of the kind of job security that it offers.聽

EMMA- Now with me in the studio is the disability employment ninja, Angela Matthews. Angela鈥檚 head of policy at the Business Disability Forum, which works with hundreds of businesses to help them do better by their disabled employees. The BDF recently discovered that only one in ten disabled employees found it easy to get the adjustments they need; so that鈥檚 the extra things they require to do their job. And the BDF also discovered that it can take up to a year to get those adjustments in place. That is a long time.聽

Angela, hello.聽

ANGELA- Hi.

EMMA- Nice to meet you.聽

ANGELA- And I love my new job title. I鈥檓 going to make that formal. Thank you for that.聽

EMMA- Disability employment ninja.

ANGELA- It sounds much better than head of policy and research. Thank you for that. I鈥檓 taking that away with me.聽

EMMA- Now, we spoke to Pippa Stacey who started in a work environment, like a stable job, and then she moved to freelancing because she wanted more control. She鈥檚 got ME. You鈥檙e disabled as well; does that bring up memories for you from workplaces?

ANGELA- It does. I have been at BDF for ten years now and one of the things that makes me stay is I love the work, but also they鈥檙e just kind. And I am the queen of hospital appointments; I always need to be away from work for a hospital appointment or for new treatment. I have a liver condition, I鈥檝e had two strokes, I鈥檓 autistic, so I鈥檝e got a lot going on. Before I found Business Disability Forum it was really hard. Even after my degree I couldn鈥檛 get a job. I won awards in my degree, I did well, but I didn鈥檛 get into any graduate schemes. I鈥檓 showing my age here, but that was before the Equality Act and the Equality Act said that employers, you must not ask disability related questions before offer of a job. And I believe that I owe that part of the Equality Act to me being employed today.

EMMA- Right. Why do you think so many disabled people are in what they call severely insecure work?聽

ANGELA- I think it鈥檚 because it鈥檚 hard for disabled people to get into work, and it鈥檚 also hard for them to stay in work as well. That of course depends on what your disability is and the difficulties you鈥檙e experiencing with employers. But one part of the great big workplace adjustment survey that I鈥檝e produced is about disabled graduates graduating from university, really bright, amazing people, coming out with really 2:1 or 1st degrees not able to find work, being exhausted. Sometimes graduates told me they were being made unwell by the recruit and assessment process.

EMMA- So, even before they get to the job?聽

ANGELA- Absolutely. And if you think the adjustments that someone might need are not really available if you鈥檙e not in university and you鈥檙e not in work.聽

EMMA- We got an email from someone called Vicky who鈥檚 in a job, she鈥檚 got a chronic illness, various things going on with her. She鈥檚 had a lot of sick leave, more than her company policy allows. What are her rights under the Equality Act? What are her employment rights? Because she鈥檚 going to continue to need sick leave and she needs the job.聽

ANGELA- So, you have the Equality Act 2010 and you also have the employers own internal policies. If any kind of case went to an employment tribunal what that tribunal would want to know is that the employer is keeping to their own policy. So, they have to do what that policy says. In the Equality Act there is the duty for employers to make reasonable adjustments for a disabled person in work. This really means removing a difficulty that someone is experiencing because of their disability.聽

EMMA- So, the Equality Act trumps company policy in terms of legal?

ANGELA- The two work together, but if you like you can kind of say that because the company policy needs to comply with the Equality Act.聽

EMMA- Right okay. So, get to know the Equality Act or find an advocate?

ANGELA- Yes, absolutely. I speak to a lot of people whose sickness absence because of their disability exceeds their company鈥檚 sick leave policy. In that situation we鈥檇 expect employers to be having conversations with the employee, because it might be that adjustments can get around that. I know from conversations that I鈥檝e had with employees that if they were allowed to work flexibly they wouldn鈥檛 have had to take sick leave.聽

EMMA- So, it鈥檚 working with them from the start?

ANGELA- Yes, absolutely.

EMMA- And if their condition changes for the disabled person to come back?

ANGELA- Yes.

EMMA- Angela, thank you so much for joining us on Access All. What an interesting conversation, absolutely.聽

Now, what do you make of this story? Have you experienced job insecurity? Have you struggled to get reasonable adjustments in your workplace? If so get in touch with us in all the usual ways. We鈥檙e on Twitter @AccessAll; you can email us accessall@bbc.co.uk; or you can send us a WhatsApp, either voice or text with the word Access at the start, to 0330 123 9480.

She鈥檚 a visually impaired author, journalist and disability commentator, and she even co-wrote the script for an opera about 18th century blind singer, Maria Theresia von Paradis. Now her new book, Life Unseen, has been described as a historical adventure. And it mixes memoire, so personal memoire about sight loss, with the history of blindness through the ages. It is Selina Mills. You鈥檙e very, very welcome to Access All, Selina.

SELINA- Thank you for having me.聽

EMMA- You were born with one eye.

SELINA- I was.

EMMA- And you鈥檝e been losing your sight for quite a long time in the other eye.

SELINA- I have.聽

EMMA- And was it your own story that made you think, do you know what, I want to find out about blind people who came before me and how they managed and what they were thought of as?

SELINA- Yeah, I think the way people treat you. It鈥檚 not so much my sight loss but how people treated me. And when I would go out with my cane I got treated differently by people I know, and it was really weird. I didn鈥檛 like the reaction to it. And then I went to an alumni university thing, and I鈥檓 sitting there with all these grungy, crusty, lovely academics, and they鈥檙e all sitting there going [puts on old voice] 鈥榦h yes, you know, blindness and everything鈥�, and they come up with all these Darwinian theories from the 19th century. They鈥檙e sort of talking about the normal gang. And then this amazing archaeologist who I knew started talking about 45,000 years ago where they found Nandy, the blind Neanderthal.聽

EMMA- Awesome.聽

SELINA- I was like what, there鈥檚 a blind Neanderthal? No one talks about blind people from the past! So, it kind of was a culmination of how I was feeling and how that there was information out there that I didn鈥檛 know and it suddenly made me understand that there were waves from the past, people kind of waving from the hillside going hello, we鈥檙e here.聽

EMMA- Yeah. And in your research, so you started looking back from 45,000 years or whatever, but one of the things that鈥檚 gone back not quite that long but very, very far is people looking for cures for blindness.聽

SELINA- Oh god, yeah.聽

EMMA- So, obviously Jesus cured people all over the shop.聽

SELINA- He did, three times.

EMMA- Three times is it? Okay, not all over the shop then.聽

SELINA- No, he did a lot. Obviously the imagery is of that. There are a lot of images of Jesus touching people鈥檚 eyes, people lying down and him raising them. So, it鈥檚 the imagery of cure.聽

EMMA- Yeah. And your opera even explored how much Maria Theresia鈥檚 family wanted her to see. Tell me a bit about the stuff that you found out, the stuff that people had to go through in the name of finding a cure.聽

SELINA- For those of us who wince at the thought of nasty things please, health warning. So, to Theresia they wrapped her head in a huge amount of plaster so her face pushed out to see if it would put pressure on her eye lobes. They鈥檇 just discovered electricity and they started putting that in her eyes. They bled her. And they also unfortunately gave her some really nasty drugs that basically make you pooh a lot, just because they thought that would cure her eyesight. And they had that continually.聽

EMMA- So, they thought maybe diarrhoea cured eyesight鈥�

SELINA- Blindness, yeah.

EMMA- Cured eyesight? [Laughter]

SELINA- Cured blindness, yeah.

EMMA- More likely to do that I would鈥檝e though. And the pain, oh!

SELINA- Oh, I know. But I try鈥�

EMMA- You鈥檝e tried it?

SELINA- Yeah, absolutely [laughter], weekends. What else have I got to do? No, I try not to focus on that about her, because I think what鈥檚 really sad is we know about her because of her medical treatments. But actually she was an incredibly successful composer and singer, and she travelled all over Europe. She made more money than Mozart. She had a school for the blind, [Germanic accent] The Blind, in Vienna. And she dies and she has a huge monument in Vienna to her. Whereas Mozart dies in a pauper鈥檚 grave and we know all about him. And he is amazing.聽

EMMA- Can we go onto faking it now?聽

SELINA- Ah yes.聽

EMMA- And fakes, because there鈥檚 a whole chapter in your book about fakes. And even recently the legend, Helen Keller, was accused of faking being deaf blind.聽

SELINA- Helen Keller was a disability advocate writer and broadcaster and campaigner who was mostly known for her blindness, even though she was deaf blind, and campaigned for women鈥檚 rights. She wrote very vehemently against apartheid and against Naziism. But her publishers actually wrote to her and said, look blindness sells, so she wrote more about blindness or she was known for that. But behind the scenes she wasn鈥檛 this perky, happy, you know, sort of blindy sort of cheerful lady. She fell in love, it all went wrong.聽

EMMA- She had feelings. She was human.聽

SELINA- My god! I know, she was. So, I believe what you are referring to is that about a year ago Twitter erupted when people accused her of being fake, and that she could not have been blind deaf because she did so much, and that obviously other people did it for her and she was faking it.聽

EMMA- You even have you own story.

SELINA- I came back from Cambridge and I tried to go through the barrier, and this guard asked me鈥�

EMMA- At the train station we鈥檙e talking?聽

SELINA- Yes, sorry, Kings Cross train station. And I went in, tried to go to the barrier, and I had my cane on my wrist, and I was solidly walking down the platform, I got to the gate and this guard said, 鈥淥h, can I see your disability pass please?鈥� and I thought, okay yeah, fine. I knew where it was, I went to my wallet, I pulled it out, I know where it is, and he goes, 鈥淏ut you鈥檙e not really blind, are you?鈥� So, I went, 鈥淕osh, I completely understand why you think that because I鈥檓 functioning so well, but I promise you they don鈥檛 give these cards to anybody, okay鈥�. And he got really nasty in front of other people, he鈥檚 like, 鈥淵ou people, you scroungers, you鈥檙e just taking off the state鈥�. I was like, okay. And finally, he was ranting so much and everybody was annoyed [laughs], that there was a queue. So, finally, you know when you鈥檙e at the point of no return?

EMMA- Yeah.

SELINA- I鈥檝e been polite, I鈥檝e been respectful, I鈥檝e been thoughtful and understanding, and then I just took out my false eye and I said, 鈥淒o you really think I鈥檓 faking it?鈥�

EMMA- And what was the reaction?聽

SELINA- Absolutely mortified, completely embarrassed, let me through, absolutely, 鈥淚鈥檓 so sorry, I didn鈥檛 realise鈥�. I鈥檓 like yeah okay.聽

EMMA- Yeah, but I鈥檝e literally had to take my own eye out to show you.聽

SELINA- Yes, and here鈥檚 my cane [laughs].聽

EMMA- But every visually impaired person, so everyone who鈥檚 not totally blind, has a story like that.聽

SELINA- It鈥檚 interesting.聽

EMMA- I think they do. Do you know what, your book made me very sad because Mary Ingalls from Little House in the Prairie, very big show in America that was repeated on Channel 4 when I was a little girl. So, basically just for people who have never seen Little House on the Prairie, it was books that Laura, Mary鈥檚 sister, wrote about her life鈥�

SELINA- In the Midwest.聽

EMMA- 鈥�in the Midwest. They were pioneers. And the books got turned into a very cheesy TV show all about Laura really, but Mary was the one I was interested in. Mary went blind from scarlet fever I think as well, and in the TV show she went to blind school, like I was at at the time. And then she met and married a blind guy and she became a teacher. And I was like this is okay, this is what I could do, I could do this. And it didn鈥檛 really happen for her, did it?

SELINA- Mary Ingalls Wilder is such an expression of the chirpy version of blindness, which is like, I even want to sing the Little House on the Prairie song鈥�

BOTH- Hum to theme tune.聽

SELINA- Okay, enough! [Laughter] And she was wearing a smock dress.聽

EMMA- What really happened to her?

SELINA- She went to blind school in Iowa. And my sister drove me out there where she went to the school. She spent seven years there, never went home. And then when she got out she went home and she actually was the moneymaker for the family. She made baskets and weaving and mats and brushes, your normal 19th century pastimes.聽

EMMA- Yeah, so that鈥檚 actually pretty good goals as well in terms of she鈥檚 actually the moneymaker. But the thing is you document a lot of the kind of education and the employment history of blind people. It鈥檚 a bit up and down, isn鈥檛 it? There鈥檚 good and bad.聽

SELINA- Patchy.

EMMA- Patchy would you say?聽

SELINA- I would say I think what happened in the 19th century was there was this huge push in general, in the western world anyway, for philanthropy. So, what can we do? Ooh, let鈥檚 help the blind people. And that was from the sighted point of view. But the other thing that happened that was really good was a lot of blind men and women from the elite who had power and influence started changing things. So, they got braille into schools; they got open schools that were not just for hiding you and putting you in the poor house, it was to actually educate you and give you an employment that you could earn your own money and do your own thing. So, my favourite lady is a woman called Elizabeth Gilbert, but her name was Bessy 鈥� so don鈥檛 get confused with the modern day writer 鈥� and she started a factory that was owned and run, sort of like John Lewis, for blind people by blind people. It was all self-contained. And the only sighted person in the room was the man at the door who checked the baskets and the soaps and everything that came out.聽

EMMA- Right. So, what do you mean by like John Lewis? In that everyone had shares in it?

SELINA- Yeah, it was a cooperative. And they had a library, they had a sports ground, they had pensions, they had music societies and choirs. So, it was sort of like its own little world. Which in some ways that鈥檚 another debate about how much鈥�

EMMA- Ghetto.聽

SELINA- Yes, thank you.聽

EMMA- Ghettoising.聽

SELINA- Yes. But on the other hand it gave a lot of people a certain amount of independence that they hadn鈥檛 had before.聽

EMMA- Reading the history of blindness, reading your story, what do you want them to come away from the book with, do you think?聽

SELINA- I think when I say people I mean everyone, so I don鈥檛 even like to say blind people: I want blind people to own their own history. I want us to have our own history. I think that鈥檚 really, really important. But at the same time and, and, I want general readers and the general public to understand it鈥檚 not like this sort of catastrophe, tragedy/inspiration template. We鈥檙e just part of the gang. We鈥檝e navigating it slightly differently, but that鈥檚 it.

EMMA- Well, just to sell your book even more Selina, go for it.聽

SELINA- The sad book [laughs].

EMMA- No, well I was going to say, she tries to answer some of those questions that are burning in your head that I get asked my taxi drivers all the time. And one of those is, can we see in our dreams. I鈥檓 not even going to answer that here; you have to read her book to find out.聽

SELINA- Life Unseen.聽

EMMA- And it鈥檚 out on 13th July.

SELINA- Thank you so much.

EMMA- That is it for this week鈥檚 Access All. I can鈥檛 believe it鈥檚 over; I鈥檝e had such a good time. And I hope Nikki鈥檚 having a lovely holiday as well. I鈥檓 going to be on my own again next week, so come back, and in the meantime subscribe to us wherever you get your podcasts from. Contact us about any of the stories we featured this week on accessall@bbc.co.uk. And thanks for listening. Bye bye.聽

[Trailer for Americast]

JUSTIN- So, Sarah, we鈥檝e been asked to put together a trailer for Americast. What do you think we should put in?聽

SARAH- Well is it too obvious to just say we鈥檒l be covering all the bigger stories that are coming out of America?

MALE- There鈥檚 a phrase which has been bouncing around since the Trump presidency, which is LOL, Nothing Matters. And the things that would matter don鈥檛 seem to matter anymore.聽

JUSTIN- I think that works but it鈥檚, well it鈥檚 not just that, is it? We need to talk as well about the undercover voters investigation, what鈥檚 happening online, what everyone鈥檚 getting in their social media feeds.聽

FEMALE- What they allow us to see is what someone who has a specific set of views or is from a specific demographic or a specific place might be seeing on their feeds.聽

SARAH- And of course we鈥檝e also got to mention all the amazing guests and experts that we have on the show helping us understand the stories.聽

FEMALE- This is a great talking point for him in the court of public opinion, but it is not going to go very far in a court of law.聽

JUSTIN- And Americast of course isn鈥檛 just about politics and news, is it? Can we get something in about the more cultural, the social stuff too?聽

FEMALE- It kind of is in keeping with the conversations that we鈥檙e having in this country about race and colonialism and the legacy of those things.聽

SARAH- Yeah, as long as you include that I think that about covers what we do.聽

JUSTIN- And then all I need to say at the end is: Americast is a podcast from 91热爆 News, and you can find it on 91热爆 Sounds.聽

SARAH- Yeah, well you have just said that.聽