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ā€˜Lewis Capaldi has done so much for the Touretteā€™s communityā€™

TV presenter Aidy Smith talks Touretteā€™s after Lewis Capaldiā€™s Glastonbury show.

Singer Lewis Capaldiā€™s Glastonbury performance went down in history after the crowd stepped in when his voice cut-out. Heā€™s announced he wonā€™t be touring for the foreseeable as he adjusts to a recent Touretteā€™s syndrome diagnosis. Friend of the show, and TV personality, Aidy Smith gives us his hot take on why this moment was so important to the Touretteā€™s community.

Think tank, The Work Foundation at Lancaster University reveals to Access All that disabled workers are 1.5 times more likely to be in ā€œseverely insecure employment,ā€ compared to non-disabled workers. We hear from Pippa, who went freelance because of the challenges she faced in the office, and Angela from the Business Disability Forum, who gives some top tips on navigating the workplace.

And visually impaired writer and disability commentator, Selina Mills, chats to Emma Tracey about her new book, Lives Unseen, a history of blindness through the ages including the moment she discovered there was a blind Neanderthal 50,000 years ago and the time she removed her false eye to prove she wasnā€™t faking being blindā€¦

Recorded and mixed by Dave O'Neill.
Produced by Beth Rose, Keiligh Baker and Emma Tracey.
The editor was Jonathan Aspinwall.

Release date:

Available now

35 minutes

Transcript

EMMA- Aidy, youā€™re here to talk to me in a bit about Lewis Capaldi at Glastonbury. But seeing as I have you, youā€™ve got Touretteā€™s Syndrome, so you are I think what the young people call neurospicy.Ā 

AIDY- Oh, spicy, neurospicy!

EMMA- Neurospicy. Do you know this word?

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

EMMA- So, itā€™s a word apparently the youth are using instead of neurodivergent.

AIDY- Oh, I like this.Ā 

EMMA- I think they just think itā€™s more fun. Thereā€™s something to it. itā€™s a bit different. Itā€™s a bit sort of [sucks breath in]ā€¦

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?Ā 

AIDY- Honestly, Iā€™m replacing every spicy margarita that I ever make now with the neurospicy. Itā€™s going to be called my neurospicy serve.Ā 

EMMA- Hey!

AIDY- Honestly, watch out, weā€™re doing the neurospicy cocktail.

EMMA- Woo!

AIDY- Love it.Ā 

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

AIDY- Do you know what, when people use the word neurodivergent theyā€™re getting a bit numb and blasĆ© to it now. So, I think if I walk into a room and go yes, Iā€™m neurospicy, theyā€™ll be like, sorry, what does that mean. Thatā€™s going to bring a whole new comment. Youā€™ve started something now. Well, the Gen Z have started it, but weā€™re taking it. Weā€™re taking it and weā€™re going with it.Ā 

MUSIC- Theme music.Ā 

EMMA- This is Access All, the ³ÉČĖæģŹÖā€™s disability and mental health podcast. Iā€™m Emma Tracey and Iā€™m in London. And Iā€™m all by myself because Nikkiā€™s on her holidays, but that does not stop us from having a jam packed show. And I know it wonā€™t stop you from hitting the subscribe button if you like what you hear, which of course you will.Ā 

Later Iā€™m going to be finding out why so many disabled people find themselves in severely insecure work. And Iā€™ll 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 youā€™re hearing of course is that viral clip from Lewis Capaldiā€™s 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 wonā€™t be touring for the foreseeable future. And thatā€™s to give him time to adjust to having Touretteā€™s Syndrome. Now, with us is another legend with Touretteā€™s Syndrome. Heā€™s a TV presenter, heā€™s our friend of the podcast, itā€™s Aidy Smith. You were watching on the TV, but for those that didnā€™t 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 ā€“ 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 wasnā€™t 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.Ā 

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, weā€™ve got to think about this is the first time in history that on this level this much awareness has been raised for Touretteā€™s Syndrome via someone who has Touretteā€™s Syndrome. And in this moment the millions upon millions of people who this clip will have reached will see that Touretteā€™s isnā€™t 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 Touretteā€™s and theyā€™re there to help us get through that moment. Iā€™m 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 heā€™s just had his diagnosis of Touretteā€™s, literally.Ā 

EMMA- Yeah, itā€™s really recent. Less than a year, right?Ā 

AIDY- Less than a year. And if you think about it it took me 15 years to come to terms with talking about Touretteā€™s.

EMMA- Right. So, his reaction to the diagnosis heā€™s always been totally honest, really open. Itā€™s kind of remarkable, isnā€™t it?Ā 

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 weā€™re already at that point of being bullied for being different or weird or odd or standing out for the wrong reasons.Ā 

EMMA- But when he was diagnosed he was in the middle of a fly in the wall documentary, wasnā€™t he, so he couldnā€™t really hide away, could he?

AIDY- He couldnā€™t. And I think that he just needs a bit of time to come to terms with what Touretteā€™s 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 werenā€™t for his Touretteā€™s and all of that excess energy in his body he probably wouldnā€™t 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, heā€™s on his guitar, what heā€™s doing then is his superpower, itā€™s his passion point. And heā€™s an unstoppable force of nature. The only reason why on that stage his tics came out a bit more is because heā€™d lost his vocal cords because heā€™d 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.Ā 

EMMA- Heā€™d have smashed it.

AIDY- Smashed it.Ā 

EMMA- Yeah. And youā€™re a bit of an unstoppable force of nature yourself, Aidy. So, what changes did you need to make to bring Touretteā€™s 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 itā€™s about uniting with other people who are like you; whether that means people in the Tourette world or people in the neurodiversity world. Itā€™s 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 thereā€™s something going on here, heā€™s just smiled at me, I shouldnā€™t be afraid, he seems like a nice guy, Iā€™m going to be polite and smile back.Ā 

EMMA- Right.Ā 

AIDY- And itā€™s little things like this that over time we learn. Donā€™t get me wrong, itā€™s not an easy journey.Ā 

EMMA- And what do you reckon would be a great use of Lewis Capaldiā€™s time that heā€™s taken away from the spotlight? What could he be doing?Ā 

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 Touretteā€™s. But most importantly I think he needs to talk to other people who have Touretteā€™s Syndrome. After six to 12 months of having this diagnosis thatā€™s barely any time at all. Itā€™s about coming to terms with it and itā€™s 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, werenā€™t you, when your Touretteā€™s 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 thatā€™s happening in their mind or body, what would be your advice for them?Ā 

AIDY- Youā€™ve 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, Iā€™m 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 Touretteā€™s Syndrome into a TV show, so I funded my own TV show through branded content and I made it happen another way. Thatā€™s what we have to do: we evolve, we innovate, weā€™re entrepreneurs, we have these beautifully creative minds and when someone says no we find another way to do it.Ā 

EMMA- And thatā€™s what heā€™s going to do too.Ā 

AIDY- Thatā€™s exactly what heā€™s going to do. I canā€™t wait until he gets back on stage. Heā€™s going to be bigger and better than ever.Ā 

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.Ā 

AIDY- Do you know what, if Lewis was here right now Iā€™d say, you have absolutely nothing to apologise for. You have done so much good today. Youā€™ve always been yourself. Youā€™ve worn your feelings and your emotions on your sleeve. Youā€™re a genuine human being. Itā€™s time for you to take a bit of time for you. Weā€™re here, your fans are here, weā€™re not going anywhere. We love you to bits. You do your babes and come back when you can.Ā 

EMMA- Woohoo.Ā 

AIDY- There you go.Ā 

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

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 Iā€™ve got Touretteā€™s Syndrome in the TV show itself.Ā 

EMMA- In what context?Ā 

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

JINGLE- Access All.Ā 

EMMA- Letā€™s talk about work now. So, whether youā€™re in work, whether youā€™re looking for work or whether, god forbid, youā€™re 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. Thatā€™s 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. Iā€™m 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.Ā 

PIPPA- Hello. Thank you for having me.

EMMA- Pippa, youā€™ve been managing ME since university, but you did try the workplace, didnā€™t 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.Ā 

EMMA- So, what challenges are they?

PIPPA- I think the main thing for me is there wasnā€™t as much flexibility over my hours. And when you have a chronic illness itā€™s 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 Iā€™m 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 Iā€™d 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 wouldnā€™t 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.Ā 

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 didnā€™t 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.Ā 

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

PIPPA- Itā€™s tough. Being a disabled freelancer is tough, even with all of the pros itā€™s often unpredictable, the work often feels instable, you just donā€™t know whatā€™s going to come in at any given time. You donā€™t have things like sick leave, which is a massive con when youā€™re dealing with a chronic illness. Thereā€™s not annual leave. And itā€™s 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?Ā 

PIPPA- Itā€™s something Iā€™m 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 Iā€™ll 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?Ā 

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.Ā 

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.Ā 

BEN- So, I think weā€™re 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 theyā€™re more likely to be in those kinds of jobs. Weā€™d 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 donā€™t 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.Ā 

EMMA- Now with me in the studio is the disability employment ninja, Angela Matthews. Angelaā€™s 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 thatā€™s 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.Ā 

Angela, hello.Ā 

ANGELA- Hi.

EMMA- Nice to meet you.Ā 

ANGELA- And I love my new job title. Iā€™m going to make that formal. Thank you for that.Ā 

EMMA- Disability employment ninja.

ANGELA- It sounds much better than head of policy and research. Thank you for that. Iā€™m taking that away with me.Ā 

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. Sheā€™s got ME. Youā€™re 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 theyā€™re 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, Iā€™ve had two strokes, Iā€™m autistic, so Iā€™ve got a lot going on. Before I found Business Disability Forum it was really hard. Even after my degree I couldnā€™t get a job. I won awards in my degree, I did well, but I didnā€™t get into any graduate schemes. Iā€™m 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?Ā 

ANGELA- I think itā€™s because itā€™s hard for disabled people to get into work, and itā€™s also hard for them to stay in work as well. That of course depends on what your disability is and the difficulties youā€™re experiencing with employers. But one part of the great big workplace adjustment survey that Iā€™ve 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?Ā 

ANGELA- Absolutely. And if you think the adjustments that someone might need are not really available if youā€™re not in university and youā€™re not in work.Ā 

EMMA- We got an email from someone called Vicky whoā€™s in a job, sheā€™s got a chronic illness, various things going on with her. Sheā€™s 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 sheā€™s going to continue to need sick leave and she needs the job.Ā 

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.Ā 

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.Ā 

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 companyā€™s sick leave policy. In that situation weā€™d expect employers to be having conversations with the employee, because it might be that adjustments can get around that. I know from conversations that Iā€™ve had with employees that if they were allowed to work flexibly they wouldnā€™t have had to take sick leave.Ā 

EMMA- So, itā€™s 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.Ā 

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. Weā€™re 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.

Sheā€™s 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. Youā€™re very, very welcome to Access All, Selina.

SELINA- Thank you for having me.Ā 

EMMA- You were born with one eye.

SELINA- I was.

EMMA- And youā€™ve been losing your sight for quite a long time in the other eye.

SELINA- I have.Ā 

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. Itā€™s 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 didnā€™t like the reaction to it. And then I went to an alumni university thing, and Iā€™m sitting there with all these grungy, crusty, lovely academics, and theyā€™re all sitting there going [puts on old voice] ā€˜oh yes, you know, blindness and everythingā€™, and they come up with all these Darwinian theories from the 19th century. Theyā€™re 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.Ā 

EMMA- Awesome.Ā 

SELINA- I was like what, thereā€™s 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 didnā€™t know and it suddenly made me understand that there were waves from the past, people kind of waving from the hillside going hello, weā€™re here.Ā 

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

SELINA- Oh god, yeah.Ā 

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

SELINA- He did, three times.

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

SELINA- No, he did a lot. Obviously the imagery is of that. There are a lot of images of Jesus touching peopleā€™s eyes, people lying down and him raising them. So, itā€™s the imagery of cure.Ā 

EMMA- Yeah. And your opera even explored how much Maria Theresiaā€™s 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.Ā 

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. Theyā€™d 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.Ā 

EMMA- So, they thought maybe diarrhoea cured eyesightā€¦

SELINA- Blindness, yeah.

EMMA- Cured eyesight? [Laughter]

SELINA- Cured blindness, yeah.

EMMA- More likely to do that I wouldā€™ve though. And the pain, oh!

SELINA- Oh, I know. But I tryā€¦

EMMA- Youā€™ve 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 whatā€™s 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 pauperā€™s grave and we know all about him. And he is amazing.Ā 

EMMA- Can we go onto faking it now?Ā 

SELINA- Ah yes.Ā 

EMMA- And fakes, because thereā€™s a whole chapter in your book about fakes. And even recently the legend, Helen Keller, was accused of faking being deaf blind.Ā 

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 womenā€™s 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 wasnā€™t this perky, happy, you know, sort of blindy sort of cheerful lady. She fell in love, it all went wrong.Ā 

EMMA- She had feelings. She was human.Ā 

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.Ā 

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 meā€¦

EMMA- At the train station weā€™re talking?Ā 

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, ā€œOh, can I see your disability pass please?ā€ 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, ā€œBut youā€™re not really blind, are you?ā€ So, I went, ā€œGosh, I completely understand why you think that because Iā€™m functioning so well, but I promise you they donā€™t give these cards to anybody, okayā€. And he got really nasty in front of other people, heā€™s like, ā€œYou people, you scroungers, youā€™re just taking off the stateā€. 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 youā€™re at the point of no return?

EMMA- Yeah.

SELINA- Iā€™ve been polite, Iā€™ve been respectful, Iā€™ve been thoughtful and understanding, and then I just took out my false eye and I said, ā€œDo you really think Iā€™m faking it?ā€

EMMA- And what was the reaction?Ā 

SELINA- Absolutely mortified, completely embarrassed, let me through, absolutely, ā€œIā€™m so sorry, I didnā€™t realiseā€. Iā€™m like yeah okay.Ā 

EMMA- Yeah, but Iā€™ve literally had to take my own eye out to show you.Ā 

SELINA- Yes, and hereā€™s my cane [laughs].Ā 

EMMA- But every visually impaired person, so everyone whoā€™s not totally blind, has a story like that.Ā 

SELINA- Itā€™s interesting.Ā 

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, Maryā€™s sister, wrote about her lifeā€¦

SELINA- In the Midwest.Ā 

EMMA- ā€¦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 didnā€™t 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 songā€¦

BOTH- Hum to theme tune.Ā 

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

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.Ā 

EMMA- Yeah, so thatā€™s actually pretty good goals as well in terms of sheā€™s actually the moneymaker. But the thing is you document a lot of the kind of education and the employment history of blind people. Itā€™s a bit up and down, isnā€™t it? Thereā€™s good and bad.Ā 

SELINA- Patchy.

EMMA- Patchy would you say?Ā 

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, letā€™s 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 ā€“ so donā€™t get confused with the modern day writer ā€“ 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.Ā 

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 thatā€™s another debate about how muchā€¦

EMMA- Ghetto.Ā 

SELINA- Yes, thank you.Ā 

EMMA- Ghettoising.Ā 

SELINA- Yes. But on the other hand it gave a lot of people a certain amount of independence that they hadnā€™t had before.Ā 

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

SELINA- I think when I say people I mean everyone, so I donā€™t 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 thatā€™s really, really important. But at the same time and, and, I want general readers and the general public to understand itā€™s not like this sort of catastrophe, tragedy/inspiration template. Weā€™re just part of the gang. Weā€™ve navigating it slightly differently, but thatā€™s it.

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

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. Iā€™m not even going to answer that here; you have to read her book to find out.Ā 

SELINA- Life Unseen.Ā 

EMMA- And itā€™s out on 13th July.

SELINA- Thank you so much.

EMMA- That is it for this weekā€™s Access All. I canā€™t believe itā€™s over; Iā€™ve had such a good time. And I hope Nikkiā€™s having a lovely holiday as well. Iā€™m 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.Ā 

[Trailer for Americast]

JUSTIN- So, Sarah, weā€™ve been asked to put together a trailer for Americast. What do you think we should put in?Ā 

SARAH- Well is it too obvious to just say weā€™ll be covering all the bigger stories that are coming out of America?

MALE- Thereā€™s a phrase which has been bouncing around since the Trump presidency, which is LOL, Nothing Matters. And the things that would matter donā€™t seem to matter anymore.Ā 

JUSTIN- I think that works but itā€™s, well itā€™s not just that, is it? We need to talk as well about the undercover voters investigation, whatā€™s happening online, what everyoneā€™s getting in their social media feeds.Ā 

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.Ā 

SARAH- And of course weā€™ve also got to mention all the amazing guests and experts that we have on the show helping us understand the stories.Ā 

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.Ā 

JUSTIN- And Americast of course isnā€™t just about politics and news, is it? Can we get something in about the more cultural, the social stuff too?Ā 

FEMALE- It kind of is in keeping with the conversations that weā€™re having in this country about race and colonialism and the legacy of those things.Ā 

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

JUSTIN- And then all I need to say at the end is: Americast is a podcast from ³ÉČĖæģŹÖ News, and you can find it on ³ÉČĖæģŹÖ Sounds.Ā 

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

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