大象传媒

EMMA- I was walking up with the younger boy to school.

NIKKI- Your son, not your toyboy.

EMMA- Yes my son, not my toyboy, to get the older boy, and a nice man rather than saying, 鈥淣ice weather today鈥�, or, 鈥淗ello, how are you doing?鈥�, he chose to say just as his passing comment, 鈥淥h, you鈥檙e doing a great job there helping mummy鈥�. And like I鈥檇 struggled to get him out of the house, he鈥檇 needed to go to the toilet at the last second. He was being a lovely 4 year old, but he was not helping me.

NIKKI- Yeah.

EMMA- And I was like, 鈥楧o I just let this pass?鈥�, and I was like, 鈥楴o actually, do you know what, I鈥檇 be letting my son down and I鈥檇 be letting myself down if I let this pass鈥�, and I said, 鈥淗a-ha, no I don鈥檛 think so鈥�, and I said, 鈥淎re you helping mummy?鈥�, and he said, 鈥淓r, no鈥�.

NIKKI- Aww.

EMMA- And then so I took it one step further and I said, 鈥淲ho helps who?鈥�, and he said, 鈥淢ummy helps me鈥�. And the man was like, 鈥淏ut surely you鈥檙e helping a little bit?鈥�. [Laughs]

NIKKI- Really like persistent?

EMMA- Yeah, he did genuinely push.

NIKKI- And what did you say to that?

EMMA- I just said, 鈥淗a-ha, no鈥�. My Ted talk was over, I鈥檇 finished educating by then. But also, my son has started taking my hand and showing me things a lot, and a couple of other people have asked him if he鈥檚 helping mummy since and I do worry that he now thinks that it鈥檚 his job.

NIKKI- Oh no.

EMMA- So I鈥檝e actually said in front of him, 鈥淥h it鈥檚 not his job, it鈥檚 my job鈥�, in a nice smiley kind of way.

NIKKI- It鈥檚 funny, isn鈥檛 it, what makes someone as default say that.

EMMA- I bet he wishes he said, 鈥淥oh, it鈥檚 getting a bit chilly鈥�.

MUSIC- Theme music.

NIKKI- It鈥檚 Access All, our weekly disability and mental health podcast from the 大象传媒. I鈥檓 Nikki Fox, and I鈥檓 in London.

EMMA- And I鈥檓 Emma Tracey, and I am in Edinburgh.

NIKKI- Em, what are the most nerve-racking things in life? I mean there are a few. But one that I definitely remember, my very first actual job. I mean no matter when you start it can be a nerve-racking experience, it can be very daunting, particularly if you鈥檝e got a disability as well. The word 鈥� and this is a very media specific word - 鈥榥etworking鈥�, feels me with absolute dread.

EMMA- Ooh, gives you the heebie-jeebies.

NIKKI- The heebie-jeebies. Heebie-jeebies.聽

EMMA- It does.

NIKKI- If you do have a disability or mental health it can be even more daunting. There are many more things to think about. It鈥檚 complex in many ways, you have to be more open. I mean it鈥檚 just a bit of a minefield, isn鈥檛 it?

EMMA- It is. So, what was your first job?

NIKKI- When I was about 15, I鈥檇 just done my Grade 7 piano, so I sat up a little piano teaching business. [Background piano music] Walked to my post office, put a little card up saying 鈥業鈥檒l teach your kids, 拢5 an hour鈥�, which actually was quite a lot really back then.聽

My first job with a company was working for a supermarket. [Background checkout sounds] I had two different supermarket jobs. I was a checkout assistant. I used to love it very much. It was a round about that time, this was getting late 90s now, where diversity ticks were coming in and companies were having to be a bit more aware of employing disabled people. Because I remember I got both jobs without an actual face-to-face interview, they were just so pleased that I鈥檇 applied, that I was fairly able to do the job, and I was disabled. So, happy days. So basically I just sat on the checkouts. And it was a job that I loved because I love a good old chat, so I like talking to customers.聽

EMMA- Yeah.

NIKKI- And then obviously it all went media-media-media. But they were my first two proper jobs.

EMMA- And what did you learn as a disabled person from doing those jobs?

NIKKI- I mean I learnt in hindsight back then I probably should have said a few more things, but I was just insistent that I鈥檇 be able to do everything. So checkout, fine, my arms were just about strong enough to sweep everything through. Could take the money. All hunky-dory. Except for when there was a massive sporting event coming along and people bought crates of like 24 bottles of lager, and then I was like, 鈥楾here鈥檚 no way I鈥檝e got the strength to scan that through鈥�. So I just used to ask customers to scan their own beers. So I learnt that I鈥檓 resilient.

EMMA- I think that鈥檚 fine, people are used to that now.

NIKKI- Yeah. I used to go, 鈥淓xcuse me sir or madam, you probably can鈥檛 tell but I鈥檓 actually disabled. Would you mind just sweeping those beers through the checkout because they鈥檙e too heavy for me, my arms won鈥檛 take it鈥�. Come up with a little gag, 鈥淗a, ha, ha, ha, ha. Thank you very much. Could you also pack your own stuff. Have a lovely day鈥�.

EMMA- [Laughs] And did it always work out?

NIKKI- Yeah, it did.

EMMA- Did people always just say, 鈥淥h yeah, cool鈥�?

NIKKI- Yeah. I had the longest queue because I used to have a nice little chat with everyone. The only thing the bosses were, 鈥淣ikki, you need to be a bit quicker鈥�. Not in the scanning but stop talking so much.

EMMA- And what did the bosses think of you getting people to scan their own stuff?

NIKKI- I never told them, Ems. Oh my goodness, I was the OG self-checkout. I was the human self-checkout. I was so cheeky back then as well. Did you have lots of job when you were younger, Em?

EMMA- I had lots of self-employed jobs. I was a wedding singer at the church. A bit of weddings. [Wedding background music]聽

NIKKI- You weren鈥檛. I did that too!

EMMA- With my friend, and my little braille sheet of songs.

NIKKI- Oh Emma.

EMMA- Yeah. It was good. It was really good fun.

NIKKI- My goodness.

EMMA- I had the most niche university job ever, I was a braille proof-reader at the National Braille Production Centre in Dublin. And what I would say about that job is that I had to stay over the summer in Dublin where the centre was, and it鈥檚 where I was at university as well, but I had to stay in slightly scuzzy houses full of people, and I had to do a lot of journeys that I wouldn鈥檛 have had to do otherwise with my cane. [Background office sounds] It was an office based situation so there was the tea round and there was the office politics, and there was friendships with older people who鈥檇 been there for a while. It was really, really useful.聽

I mean it was an incredibly niche job. I know so many amazing blind and visually impaired people who would have been able to do that job, but there weren鈥檛 many jobs for us at that age in our lives, we couldn鈥檛 do the supermarket checkout thing really.

NIKKI- No.

EMMA- Couldn鈥檛 do the waitressing. And then from there, because of the magazine work I did for blind people, I was really into audio and podcasting and stuff and disability, so that helped me to secure a job in London. I had to move country for that, so that was another big adventure.

NIKKI- Oh my goodness Emma, that must have been so scary.

EMMA- But what I remember when I was looking for accommodation, I remember looking at house shares, and all the ones I鈥檇 done before had been with people I knew and I thought, 鈥楬ow am I going to face this? How will I know what my food is in the fridge? How will I know where to sit when I come in the living room, who鈥檚 on what chair?鈥�. It just was so, so daunting. And actually I ended up finding a solution that did work for me, but it was very, very scary the idea of moving in with people I didn鈥檛 know when I couldn鈥檛 see.聽

But then when I got into the office, and I think it鈥檚 interesting, it鈥檚 a lot about familiarising yourself as much as possible as a blind person before you have to start the work. And it鈥檚 also knowing that if you鈥檙e much slower at doing some things at the start, you鈥檒l probably pass people out eventually, but it just takes a lot longer sometimes to learn where things are on the screen and how to get from one part of the screen to the other if you鈥檙e doing computer work. But once you鈥檝e got it and once you鈥檝e figured it out, sometimes with a screen reader you can do things faster than other people. But it鈥檚 about keeping the faith, isn鈥檛 it. Something like two-thirds of blind and visually impaired people are unemployed, and there are so many incredible disabled people who are unemployed, so I feel very lucky.

NIKKI- I was 34 when I got the job as a disability correspondent, and I had a whole period between of about five years where I really struggled. So it is hard, I really did push myself. I wouldn鈥檛 want people to copy what I did, I think I did things a little bit too extreme, so I wouldn鈥檛 go to the bathroom for a whole day because I couldn鈥檛 because I didn鈥檛 have any support.

EMMA- So that must have affected what you ate, what you drank.

NIKKI- Yes.

EMMA- And that must have affected your mood.

NIKKI- I鈥檓 not a grouchy person, but you sometimes feel a little bit grouchy. There was once where I couldn鈥檛 hold it, so I managed to get off my scooter by leaning on a wall, me and my sister call it 鈥榯he crab鈥� because that鈥檚 how we used to touch the walls to walk, got into the bathroom. There was a lovely lady who was cleaning all of that area, and I just stopped her, I said, 鈥淚鈥檓 really sorry to ask you this but I need to go to the bathroom. Could you sit me down?鈥�, and when she sat me down I was like, 鈥淐an I shout you in a couple of minutes and would you be able to stand me up?鈥�. And she did it. I鈥檒l never forget that lady. I got a bit teary afterwards, I was like, 鈥淭hank you so much, you didn鈥檛 need to do that鈥�. You know that鈥檚 about as personal as it gets.聽

I wouldn鈥檛 recommend that. I was dyslexic and disabled so I was slow on every single level and I should have made that clearer and I didn鈥檛. You have to be open. And you can suss the companies that are good as well, but try and pick your company, pick where you want to work, strategise a bit, because it will help you. But then when you鈥檙e there, dazzle them with your brilliance and your personality and all that.

EMMA- Yes.

NIKKI- But once you鈥檝e dazzled them with your brilliance, be open and say, 鈥淚 might take a little bit longer, but give me like six months and I鈥檒l be better than everyone else鈥�.

EMMA- 鈥淎nd I may need to work flexibly, but I can tell you that I am incredibly efficient鈥�.

NIKKI- Yes.

EMMA- 鈥淗ere鈥檚 why you do not need to worry about me doing less work than anyone else. I may do it in a different timescale, I might do it at a different speed, but it will get done鈥�.聽

NIKKI- If they know you鈥檙e dedicated and that you are working hard and you鈥檙e doing your thing, it should be fine. And if it鈥檚 not, come see me and Emma and we鈥檒l try and sort it out.

MUSIC- Access All

NATALIE- Morning. I鈥檓 really sorry, I thought the social workers had been in touch with you to let you know that our care package with you ended last night. Sadly I don鈥檛 have any clients in your area and staff are complaining about fuel costs. Good luck with everything in the future.

NIKKI- That鈥檚 the shocking text Natalie Rowly received in April from the company providing her care, and she鈥檚 been without help ever since. In an Access All exclusive, we can reveal that rising petrol prices are driving carers out of the profession, leaving the people who rely on them without vital support. The Home Care Association surveyed 500 of its members 鈥� that鈥檚 care providers 鈥� about this issue, and told Access All what they found. Emma, you鈥檝e got some of the findings, haven鈥檛 you?

EMMA- I do. More than half of the care providers said that some of their staff had given notice or already left the sector. While 59% said that many carers plan to seek work elsewhere and felt that they were being forced to leave the industry as they could no longer afford to pay for diesel or petrol for their cars.

NIKKI- This worrying trend, which is part of the wider cost of living crisis, has had a massive impact on Natalie who received that text message. Her care package was dropped by the company contracted by her local council to send carers to her home due to the rise in fuel costs. The council didn鈥檛 immediately find a new provider, so now even though the money is still available for Natalie鈥檚 care, she鈥檚 without that vital support. The 32 year old is a wheelchair user and she鈥檚 in constant debilitating pain and has regular seizures. I spoke to Natalie recently, we had a little chat, and she was actually talking to me from her bed, and I asked her what her care looked like when it was working well.

NATALIE- They came in in the morning about 10 o鈥檆lock, help me have a wash all over, change my pad and gave me my meds. Made me a cup of coffee. Did my hot water bottles. So they sorted me out while Jason sorted Edward out. And then they鈥檇 come again at about three o鈥檆lock and give me more meds. On the night-time care, if I needed a change of pyjamas I would have. They鈥檇 change my pad. Get me ready for bed. I鈥檇 have more meds. Quite severe burns on my back, so I have to have cream put on my back, so that鈥檚 something that they would do everything time they come.

NIKKI- Natalie told us she went from support three times a day to nothing. It has affected her mental health because those interactions also gave her the chance to have a little rant to someone other than her family, and to find out what鈥檚 happening in the outside world as well. Extended family and friends visit, but physically her hubby, Jason, does all of the personal care, and that鈥檚 putting a strain on their relationship.

NATALIE- Jason suffers with a condition called sarcoidosis, and stress makes his condition worse. He has days where he can鈥檛 function and he can鈥檛 help me properly, so I鈥檒l end up spending the day in the bed because I don鈥檛 want him hurting himself by trying to help me get onto the commode. It鈥檚 really hard, and sometimes I do feel like he鈥檚 more of a carer than a husband.

NIKKI- That partner/carer issue is definitely one we can both relate to, can鈥檛 we Emma, we鈥檝e had a chat about it in the past.

EMMA- Yeah. And we鈥檒l be talking about it on the podcast soon as well.

NIKKI- Yeah, we will. Natalie and Jason have obviously had a lot to deal with, but they are both tough cookies and they have been fighting really hard to get something in place to sort this situation. When we spoke, Natalie was actually quite positive about the future.

NATALIE- I do have hope. I think that social services have finally got fed up of hearing Jason鈥檚 voice on the phone, because we鈥檝e managed to get them to come out and do an assessment. Because how I was when I first started getting care is not how I am now, my condition鈥檚 got a lot worse.

NIKKI- A spokesperson from Shropshire Council which pays for Natalie鈥檚 care said, 鈥淲e are very concerned to hear about the difficult circumstances, and can confirm that we are actively working with the individual regarding their support needs and how these can be met. Shropshire, like other areas, is experiencing a shortage of carers, and the increased cost of living, including fuel prices, adds to this very challenging position鈥�.

EMMA- Remember that text that Natalie read out for us at the beginning?

NIKKI- Yes.

EMMA- Well, that was from her original care provider, the one that had to stop sending people, and it鈥檚 a family owned company called Silverbell. They鈥檝e actually sent us a statement too, and they say, 鈥榃e, Sarah and Tom, the owners of Silverbell, are mortified by what鈥檚 happened with Natalie Rowly. In April, as the fuel increases started to bite, we were left with no alternative but to downscale our operation. The funding provided for each client was no longer sufficient to cover the carer鈥檚 petrol costs and travelling time in reaching the more distant of our clients. So, reluctantly we鈥檝e had to relinquish all but 10 of our geographically closest clients鈥�.聽

And obviously they鈥檙e talking about the money that the council gives. The council gives them money and then they use it to provide care, and they鈥檙e saying that money isn鈥檛 enough to cover the fuel costs and the care costs.

NIKKI- Yeah.

EMMA- They said that the council was notified and chased, and that it looks like Natalie鈥檚 case just slipped through the system.

NIKKI- So let鈥檚 get the carer perspective now. Louise does home visits for a care agency, who we鈥檙e not going to name to protect her identity. She is one of those considering a career change because of rising fuel costs, and she鈥檚 here today. Hello, Louise.

LOUISE- Hiya. Are you all right?

NIKKI- Oh, I鈥檓 good thank you. Thanks so much for joining us today.

LOUISE- No problem.

NIKKI- Louise, first of all could you describe your job. What kind of tasks do you do on a day-to-day basis?

LOUISE- Well, I鈥檓 a domiciliary carer, which means that I travel around between house and house. I basically do any care that the client needs, which will range from just having a chat, to making a cup of coffee and making sure they鈥檙e eating their lunch or whatever, to getting the clients up, full wash. We do have to do a certain amount of changing of bags for when they鈥檝e had their bowels or whatever removed. We have full meds training, so we have to give their medication and that sort of thing. And we鈥檙e just a contact to the outside world for a lot of them because a lot of them have got no contact to the outside world and they鈥檙e completely alone.

NIKKI- Such a vital role, isn鈥檛 it, Louise.

LOUISE- Yeah.

NIKKI- And it鈥檚 the kind of profession where you will go to several people鈥檚 houses in one day and have a sort of set amount of time there. Is that right?

LOUISE- Yeah. We have between 15 minutes and an hour generally between each house/each client, depending on what needs doing.

NIKKI- So it鈥檚 pretty hardcore, isn鈥檛 it, as well really. I guess you鈥檝e got to run to time.

LOUISE- You do. A lot of the time it鈥檚 quite difficult to fit the amount of stuff that you鈥檝e got in to do. You don鈥檛 want to rush it because like I say some of these people aren鈥檛 seeing anybody else in the day, so you do want to give them that extra 15/20 minutes of chat and conversation.

NIKKI- How many miles do you reckon you rack up in a week then, Louise?

LOUISE- I did look at my last payslip which is a four week payslip, and I did 450 miles in that month.

NIKKI- Wowzers.

EMMA- I just assumed that carers got paid by the hour no matter what they were doing, like driving or caring.

LOUISE- No. The way it works is you get paid for the visits that you do, and the travel between visits you just get paid your mileage.

EMMA- So if you were travelling half an hour and visiting for someone for 15 minutes, you get paid for that 15 minutes, not the 45 minutes.

LOUISE- Yeah that鈥檚 right, yeah.

NIKKI- Obviously you know with the petrol prices now, I mean everything鈥檚 going up, has the money you get for mileage from the company you work for increased as the fuel prices have risen?

LOUISE- To be fair, it did increase but by 5 pence. We get 30 pence a mile now, yeah.

NIKKI- 30 now. So you got 25 pence before.

LOUISE- Yeah, yeah. If I鈥檓 travelling half an hour for a 15 minute visit, we鈥檙e only paid just above minimum wage. Even if I鈥檓 travelling for half an hour for a half an hour visit, that takes you down to, what, 拢4/拢4.50 an hour.

NIKKI- Do you know other colleagues who are in the same position as you and finding it difficult at the moment?

LOUISE- Yeah. We all moan at each other. But generally because we鈥檙e carers we kind of like get on with it.

NIKKI- And also I get the impression that you really enjoy this job as well.

LOUISE- I do. I didn鈥檛 think I would, to be fair.聽 But it鈥檚 one of those, I鈥檝e come out and I just really like going into people鈥檚 houses and seeing people so happy to see you.

NIKKI- Are you having to think about potentially getting another career?

LOUISE- I am thinking about going into care homes simply because of the travelling. But I don鈥檛 particularly want to do that because although it鈥檚 still care, I don鈥檛 think you get the same feeling of achievement.

EMMA- You feel like you make quite a lot of difference to their lives by going into their space and giving them a hand.

LOUISE- Yeah. I know I would get the same sort of feeling of like getting on with people, but I鈥檝e got clients who really love seeing me and they say, 鈥淥h, when am I seeing you again next?鈥�, and they鈥檙e so happy.

NIKKI- I mean Louise, I want to know when I鈥檓 going to see you again next. [Laughter] I really do.

EMMA- Exactly. Yeah, absolutely. What would need to happen to make you think I am definitely going to stay in this domiciliary care job?

LOUISE- I could cope with the 30 pence a mile if they would pay us from the start of our first client to the end of our last client. Like a normal person would be paid if you鈥檙e working in a supermarket, if you go in for eight hours you get paid for your eight hours. So I think they should just be fair and pay us whilst we鈥檙e at work.

NIKKI- I鈥檝e got a statement here, Louise, about the rising fuel prices. The government told us 鈥榯hat it understands people were struggling with rising prices, which is why we are taking action to support people, including by cutting fuel duty鈥�. Well listen, thank you so much for joining us, Louise, it鈥檚 been so nice to chat to you.

LOUISE- It鈥檚 absolutely no problem.

NIKKI- And I hope you stay in a sector that you really enjoy, because that鈥檚 really lovely to hear.

LOUISE- Thank you.

NIKKI- And I鈥檓 pleased to say that since our chat, Natalie has been reassessed and has an agreement from social services that a new more expensive care provider can take on her care package. Which is brilliant news.

EMMA- Yay.

NIKKI- She is just waiting for carers to start arriving again. Oh, I hope that happens so soon for you, Natalie. And also, we must say thank you to Alice Cuddy and Alex Taylor for looking into this story for us on Access All.

MUSIC- Access All

EMMA- This week鈥檚 guest is Caroline Casey, and it will surprise absolutely no-one that the week I do the interview solo we choose a visually impaired Irish woman. No regrets. Caroline didn鈥檛 know she was visually impaired until she was 17. She kept quiet about it until she was 28. And then she made up for it by becoming a full-time disability activist fighting for the rights of disabled people on the world stage. And when I say world stage I mean world stage, like World Economic Forum, Davos, that kind of world stage. Caroline is also the founder of the Valuable 500, which works with CEOs of global companies to make business more inclusive. And she topped the Disability Power 100 List last year. 鈥極oof鈥�. Hi, Caroline.

CAROLINE- Hi. How are you?

EMMA- I鈥檓 good. There鈥檚 a tiny bit of me that is like, 鈥業 wish I could of hid it for a while sometimes鈥�.

CAROLINE- I think there are people that don鈥檛 understand and think, 鈥極h no, how could you? And you鈥檙e so inspiring and extraordinary鈥�. I鈥檓 like I鈥檓 kind of not really, right.

EMMA- That鈥檚 really interesting that people would say you鈥檙e inspiring for hiding it, because all I ever think when I hear your story is I 聽 always just want to give you a big hug and say, 鈥淭hat must have been so hard and that must have been so tiring, and how did you get all the support you needed in your education?鈥�. You know, that鈥檚 the way I always see it.

CAROLINE- And actually that鈥檚 just the perfect response. In discovering that I had ocular albinism at 17, I couldn鈥檛 connect to it, I couldn鈥檛 relate to it, I didn鈥檛 understand, I didn鈥檛 know what I meant to me or for me.

EMMA- Ocular albinism you popped in there. Just in Emma Tracey level terms, what is that?

CAROLINE- It鈥檚 a form of albinism. I have very white skin, white blonde hair. But the issue is it鈥檚 in my vision which is now about one foot. I often say to people who have vision, if you鈥檙e on a Zoom call you know when you put the blurry screen on, that is my vision sort of after one feet. So it鈥檚 the vision. And I have quite strong nystagmus as well, which means my eyes shake.

EMMA- How were you unaware that you were visually impaired until you were 17?

CAROLINE- It was actually quite a deliberate decision by my parents, because I was born in 1971. I think my father particularly thought very strongly that the world is not an easy place, and it certainly wouldn鈥檛 have been an easy place for anybody with a disability, and he did not want my life to be defined by or limited by other people鈥檚 perceptions of what disability could and could not enable you to do. So they kind of did it sort of as a human experiment and just didn鈥檛 tell me. And that is absolutely the truth. I was brought up like a child who wore glasses. I was useless at ball sports, so nobody wanted me on their team. I definitely walked into a lot of walls and doors. The blackboard聽 at the time, because we didn鈥檛 have computer screens and whatever, I mean I learnt to listen and memorise.

EMMA- You probably never saw the blackboard in your life.

CAROLINE- No, not really. I saw a lot of white stuff on it. And I learned to listen. I listened to information and I鈥檇 map it in my head, and so I have a kind of very interesting way to learn and memorise things.

EMMA- But your sister was visually impaired.

CAROLINE- Yeah. And so what was very different about both of us is her nystagmus was much more severe, so her eyes were like very crossed, and so my parents couldn鈥檛 really hide it with Hilary. So Hilary grew up knowing, and I grew up not knowing. And because I always going to all the eye tests, I just presumed that I was supporting my sister. That鈥檚 just how it emerged. I know it sounds crazy, and maybe it is, but that鈥檚 just how it was. I think also would my parents do it differently if it were all over again? Yes.

EMMA- So, you got to 17 without knowing. How did you find out that you were visually impaired?

CAROLINE- This is a true story. My father gave me a driving lesson for my 17th birthday.

EMMA- What?!

CAROLINE- I know. Hilary and I had an eye exam on my 17th birthday. We were seeing this particular specialist. Me ridiculously kind of 鈥榙oo-de-doo-doo鈥� thinking I was there for Hilary, and he goes, 鈥淲hat are you doing, it鈥檚 your 17th birthday I notice on your form鈥�, and I went, 鈥淥h yeah, we鈥檙e going to down to the police station so I can get my provisional driving licence鈥�, and he turned to my mother and said, 鈥淲hy doesn鈥檛 she know?鈥�. And that鈥檚 how I found out.

EMMA- Oh my goodness. Well you know what, people listening are going to think that this is unbelievable and unheard of. My husband, who鈥檚 also visually impaired, he was on a driving lesson when he realised he wouldn鈥檛 be able to drive. They asked him to read a sign and he said, 鈥淚 wouldn鈥檛 be able to read that sign if I was five times closer to that sign鈥�, and they said, 鈥淲ell you鈥檙e not going to be able to drive鈥�. I mean I think he knew he was visually impaired, but that鈥檚 how he knew he wouldn鈥檛 be able to drive. I think it鈥檚 really hard for people to understand how that could happen, but that鈥檚 two cases that I know where it鈥檚 happened, you know.聽

Between 17 and 28 you knew you were visually impaired but you weren鈥檛 keen to talk about it. Can you just talk about some of the things you鈥檝e done to keep that quiet or to get by?

CAROLINE- Oh my gosh. Yes. I chose to do archaeology in college, because I always really wanted to travel, and so archaeology was part of the adventure. And truly going to university I didn鈥檛 tell anybody. So the simple strategies of how do you manage in a lecture at the time was, I used to sit beside people with really big handwriting at the side that I could see, so if they were left-handed I would sit at their right hand.聽

I used to tell people that I鈥檇 forgotten my glasses, so if I was meeting them, I used to say, 鈥淲ill you make a noise when I鈥檓 approaching you鈥�, you know, so it was like a 鈥榖eep-beep-beep鈥�. So I used to do that.聽

I would literally follow people into bathrooms. I鈥檒l never forget when I first went to UCD looking at the profile of people 鈥� and this sounds awful - do they have bumps in their chest, and that meant that it was the ladies. Because honestly the signs on doors, how do you see the difference between a ladies and a gents? Well you could use your nose, you could smell the difference, but simple things like that.聽

So I used humour. Humour was a really, really good deflector for me. I was a bloody brilliant actress. But it is exhausting. It is exhausting trying to cover who you are and what you need all the time. So it did take its toll, for sure.

EMMA- So, what was the breaking point? When did it get too much?

CAROLINE- [Laughs] I couldn鈥檛 practice archaeology at the time because my vision genuinely was too low to excavate.

EMMA- Aww.

CAROLINE- My nose to the mud, no. And then I actually went into horticulture. I was also a masseuse. I had a long and winding road to where I got to. Then I went back to college to do a business degree and did a Masters in Business. Honestly, it was getting harder and harder. Gosh, if there鈥檚 any young people, please don鈥檛 hide. The world is different and there are a lot more people out in the world now. I couldn鈥檛 see a me out there.

EMMA- So you had no role models.

CAROLINE- No role models. I didn鈥檛 have an Emma Tracey. I鈥檓 sorry, but you didn鈥檛 exist.聽

EMMA- [Laughs]

CAROLINE- No, no truly, you didn鈥檛 exist, okay?

EMMA- Yeah.

CAROLINE- I didn鈥檛 see you in business. And so when I went into business, if I had declared that I was registered blind, would I have got the job? Would I have got into that management consultancy company? I just don鈥檛 know. So I hid it. I hid it there for two years. Eventually my eyes just couldn鈥檛 take the hiding, they broke down. It was my vision that broke down first, and then it was my heart that broke second. I didn鈥檛 have a choice, so I came out of the closet at 28 years old.聽

The company sent me to an eye specialist and he told me I needed to take time off. He was the first person to ever challenge me and he was like, 鈥淲hat are you doing? Why are you so terrified to accept your sight? Why are you trying to avoid it?鈥�, and he said, 鈥淚t鈥檚 not your sight, it鈥檚 the way you live with your sight that鈥檚 the problem鈥�. It was very sweet, he asked me what I wanted to be when I was 17, and I obviously wanted to be lots of things like racing cars, but I had always wanted to be Mowgli from The Jungle Book and I wanted to be a cowgirl. What happened was, after that eye exam I was kind of broken-hearted, honestly. The journey to self-acceptance is much more difficult than people say, and it鈥檚 not like the film and the movies and you don鈥檛 get these great 鈥榓h-ha鈥� moments, it鈥檚 not like some credit role inspiring story. But in a way I wanted it to be that way.聽

So, eight months after that eye exam, I found myself in India face to trunk with an elephant, and I became Mowgli by becoming an elephant handler, and I travelled across southern India for four and a half months. And that鈥檚 how I came to terms with my own sight loss.

EMMA- How did that help you come to terms with it?

CAROLINE- First of all, it was the entry point into what I do now, which is I am a disability activist as you were saying at the beginning. But I have still shame 鈥� and you can hear my voice wobble 鈥� that I realised that I was part of the problem about disability exclusion, because not owning my own vision I was discriminating. It鈥檚 like I saw my own blind spot. I was one of 1.3 billion people across the world, I was one of a family of so many people with vision impairment. Then I just don鈥檛 know how to explain it, it just became part of who I am. But actually my real final acceptance, it didn鈥檛 come until much later, I was the Irish elephant girl. Was that really acceptance, or was that a distraction?

EMMA- Well it certainly gives you attention.

CAROLINE- I often think an awful lot of what I鈥檝e done with my life is because I don鈥檛 know if I ever felt I was good enough or loveable enough. I think that鈥檚 what happened, that I was lovable if I was going to be part of the solution to help the end of disability exclusion. I think people thought that I was inspiring, and I hate that word, because I overcame my vision. That is absolute [beep]. I am great just because I鈥檓 a woman right now trucking through life like anybody else, right, just doing my thing as I move through life.

EMMA- You have done an awful lot of things over the last 20 years. The world stage like Davos and the World Economic Forum. You鈥檝e had massive campaigns with massive businesses around inclusion. You鈥檝e been kind of a household name in the disability and the business sector, and it鈥檚 kind of culminated in the Valuable 500. What is the Valuable 500 and what鈥檚 it trying to achieve?

CAROLINE- The Valuable 500 is the world鈥檚 biggest partnership of 500 companies and their leaders who are committing to end disability exclusion through business. Because the rights of people with disabilities will never be achieved if business is on the side-lines.聽

EMMA- Caroline, what is next for you? What鈥檚 coming up for you?

CAROLINE- What鈥檚 next for me is to herd those 500 companies and get them to act together, use their force and influence and power to remove some of the biggest barriers that exist. So that鈥檚 the Valuable 500. I鈥檓 here in New York as the President of the International Agency for the Prevention of Blindness. You hear me talking about trying to work to end the exclusion of people with disabilities, and yet there are billion people in the world who have preventable sight loss, and that to me is ludicrous. The whole 鈥楲ove Your Eyes鈥� campaign is asking every single one of us to take care of your eyes so that we can politically create the force to make sure our countries and our governments take care of our eyes as well

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EMMA- What a superstar Caroline Casey is. And she did that interview on two and a half hours鈥� sleep, so fair play to her. We absolutely love hearing from you. You can email us accessall@bbc.co.uk Tweet us @bbcaccessall. And if WhatsApp鈥檚 your thing, you can send us a voice message or a text message, and our number is 0330 1239480, and please put 鈥榓ccess鈥� at the beginning of your message, it really, really helps us out. Thank you so much for listening to this week鈥檚 Access All. Nikki will be back with me for the full show next week. See you later. Bye.

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[TRAILER]

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

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

ZURCH- We have to be prepared to tear it all up because something that we鈥檙e not expecting is going to happen.

JUSTIN- I think that works. But it鈥檚 not just that, is it, we need to talk as well about the undercover voters鈥� investigation looking at what鈥檚 happening online, what everyone鈥檚 getting in their social media feeds.聽

MARIANNA- 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.

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.

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.

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?

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.

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

JUSTIN- And then all need to say at the end is, Americast is a podcast from 大象传媒 News, and you can find it on 大象传媒 Sounds.

SARAH- Yeah, well you have just said that.