Disabled people are up, carers are down
The stats are in and there are fewer disabled people than expected.
The Office for National Statistics have released some disability stats that some are finding a little surprising. The number of people who declared themselves disabled in the 2021 Census didn’t go up in the way people expected, while the number of unpaid carers, unexpectedly, also went down. Carer and founder of the We Care Campaign, Katy Styles, and academic Miro Griffiths, from the famous Centre for Disability Studies at Leeds University, try to work out why.
Dr. Amit Patel's recent autobiography revealed how he scoured the world for a solution to his pending sight loss but eventually failed. Amit and guide dog, Kika, visit the studio to talk about how employers couldn't see past his disability when he was applying for jobs. He also chats about his recent CBeebies hit, Dog Squad.
And Access All's presenters, Nikki Fox and Emma Tracey get caught up on suits – we’re talking exoskeletons and an electrical zapping suit which can help some people with cerebral palsy minimise their muscle spasms.
Produced by: Keiligh Baker and Emma Tracey
Recorded and Mixed by: Dave O'Neill
Series editor: Beth Rose
Editors: Damon Rose, Sam Bonham
Transcript
NIKKI- So, years ago, Ems, I got the chance to walk in an exoskeleton.
EMMA- You have mentioned that before.Â
NIKKI- Once or twice, or maybe 100 times, yeah. And it was brilliant because I only spent about 20 to 30 minutes in it, but that night I walked to bed better than I’d ever walked before. And that was just from being stood upright, which is something that I hadn’t done for such a long time. Yes, I’m going to be able to stand up, and that’s great for your health anyway, just great for your whole system and your body. And the guy, the kind of physio guy, he’s designed exercises that will probably work muscles that I’ve never used before.Â
EMMA- Oh right.
NIKKI- Because I used to walk in a certain way, and when I did walk it was a bit like a wobble, a Weeble, you know what I mean, sort of side to side.Â
EMMA- Everyone always says a Weeble; I’ve never met a Weeble.Â
NIKKI- To be honest I didn’t know what it was, but people just used to say it.
EMMA- They always say it when they talk about disabled people who don’t usually walk, walking.Â
NIKKI- Yeah.
EMMA- Weebles wobble but they don’t fall down.Â
NIKKI- Well, exactly, and that was my gag: but I do. Ha ha ha. And I do feel that if I do strengthen up a little bit, even if it’s the tiniest amount, that might just help me in my daily life.
EMMA- How?
NIKKI- Well, I still do a little bit of walking with Libby, it might make my walking a little better. It’s getting pretty ropey. And the more I walk the tireder I get, and the more I wobble. And sometimes I just have to do uppy and downies, that’s what Libby and I call them; you stand up and you just sit back down again.Â
EMMA- But why do you want to make the walking better?Â
NIKKI- Because I want to, I don’t know, I want to keep hold of the things that I can do. It’s all about keeping as independent as possible, isn’t it? It’s not that I want to walk, it’s not like I want to go, hey guys at Access All, check out my walking. It’s not that. It’s just the little things will help me. I can still walk into the shower, I can still walk from my bed to wherever. Do you know what I mean?Â
EMMA- Will it make anything else easier?
NIKKI- You are so naughty.
EMMA- I didn’t say anything!Â
NIKKI- I saw that smirk. Emma Tracey.
EMMA- Well, will it?Â
NIKKI- Emma! My dad listens to this podcast.Â
MUSIC- Theme.
NIKKI- It’s another Access All, the disability and mental health podcast from the ´óÏó´«Ã½. I’m Nikki Fox, and I am the ´óÏó´«Ã½â€™s disability news correspondent and Watchdog presenter. And I’m in London.Â
EMMA- And I’m Emma Tracey and I’m in Edinburgh. I’m a disability journalist, mum of two, and occasional outdoor swimmer, but not at the moment because it’s blinking freezing.
NIKKI- So, Emma Tracey, do you know how many disabled people are in England and Wales?
EMMA- No, I don’t, but I think you’re going to tell me later in the podcast.Â
NIKKI- I’m going to be asking you soon. Stand by Emma Tracey. Last week I went to film a piece about something called a Mollii suit. Have you heard of this suit?
EMMA- No, I have not. What is it?
NIKKI- So, I say the word exoskeleton, don’t I, just assuming everyone knows what it means.Â
EMMA- Yeah, which I assume is like a full suit that walks you.
NIKKI- Exactly, like Robocop.
EMMA- So, is this the same?Â
NIKKI- No. this looks like a sexy black cat suit to be honest with you, with some leads and wires and all of that. So, it’s a material suit. Without getting way too technical it’s got some fancy things inside which sort of zap parts of your body.
EMMA- With what? What do they zap them with?
NIKKI- I liken it to the feeling you get when you wear an ab toning belt. You wear it and it helps a lot of people with cerebral palsy, because people with cerebral palsy have something called spasticity, which just makes their everyday life a little bit tiring and a lot harder to move and walk and do the things that we all want to do just to keep independent potentially. Also people with MS. So, the guy that invented it invented it because a friend of his got MS, and he was helping his friend out manually with some kind of exercise and realised if you point the toe you can move the leg better. How do we do this without having to do it with another person – that was his thinking. So, if you zap one muscle, say on your forearm at the front, it helps the muscle at the back relax. That’s literally as technical as I’m going to get. So, he can programme this suit for each individual user.Â
So, I met Jeff and Jack, two phenomenal young men, both had cerebral palsy. Jack was non-verbal, and he when he was in a seated position he would move a little bit not in his control, and it was very tiring form him. He had his fists clenched. When he would hug his fiancée, Bethany, he’d sometimes nut her by accident, she was joking about. Jeff was verbal and he could move a little bit, with a bit more ease. So, two people with two different cerebral palsies, they both sat in the suit individually for an hour. What they did was they did some exercises before the suit was on and then exercises after, so we could do a compare and contrast. And it was really, really quite something. I didn’t expect it to be as…
EMMA- So, it worked?
NIKKI- Yeah, it did. I would say with Jeff it worked well; but I would say with Jack it really did work. Because when Jack was walking he could walk in a frame with his physiotherapist, and when he walked he walked with one leg would cross over the other. Again, needlessly tiring for him. He’d put like a ball from one side of the table into a box, a drinks cup from one side of the table into a box, and that took him quite some while to get the movement to get the thing in the box. After the suit he got it in so much quicker. He was so much more, it was faster but also more secure in the way he was doing it. And then this beautiful moment happened with his mum:
CLIP- And look, we’re holding hands. Normally it’s fisted, and it’s not. Holding my son’s hand. I love you.
NIKKI- Honestly Emma, everyone was crying. I was crying. Do you know what, maybe non-disabled people would look and think oh you know, okay, so his legs aren’t crossed and his legs can open more and his hands can. But actually I know what just that one – I’m sure you do as well, I’m sure many people do – that one small little change can do… If his hand opens he can maybe grip a bottle better. If he’s walking and his legs aren’t permanently crossing one over the other over the other it’s not going to tire him out as much, he’s going to have more energy.Â
EMMA- Can people just get it or is it hard to get?
NIKKI- Well, it’s about five grand. And Frederick, which obviously not many of us have a spare five grand just hanging around the place for a suit, however he’s very passionate about trying to get it to people who need it, whether that gets funding through local authorities or through the NHS, he’s working towards that, the inventor Frederick. He took that up with a big company and that’s how they want it to go to people.Â
EMMA- Is it like a wearable physiotherapist? Should physiotherapists be quaking in their boots?
NIKKI- No, what it does, it works alongside therapy; that’s where you get the killer results.
EMMA- Darn it, you still need to do your physio lads, I’m afraid.Â
NIKKI- You still need to do your physio.Â
Thank you so much if you’ve been in touch recently. We do read all of your messages however they come in. now, listener Jade sent us a WhatsApp message about how a chat with the delectable 1Xtra deejay, Reece Parkinson, on his recent diagnosis of type 1 diabetes. Now, we touched on type 2 in the interview, didn’t we Em, which is a condition which develops quite differently to version one. But Jade was disappointed with how it was described. Now, Jade has said this, ‘It’s a lazy and stigmatising stereotype that people with type 2 bring it on themselves through poor diets or alcohol. The idea that there’s a good diabetes and a bad diabetes is outdated, harmful and entirely inaccurate. I feel that Reece’s comments should have been balanced rather than left to stand’.
EMMA- Jade is right that there is more to it.Â
NIKKI- Yeah.
EMMA- So, Diabetes UK said that there’s a higher risk of type 2 also if a close relative has it, if you have high blood pressure or high cholesterol, if you’re of South Asian or African Caribbean decent, and actually there’s a 75% chance of you getting it if both of your parents are type 2 as well. So, it’s very, very complex, and thank you Jade for that.Â
NIKKI- She does add, ‘In all my time of listening that’s my only complaint. I can’t stress enough how much I love the podcast, or how valuable I consider it to be’. Oh that’s lovely. Oh, thanks Jade. Honestly, your feedback really is important and it helps us build the programme. Emma, how can listeners get in touch? Tell us.
EMMA- They can drop us a WhatsApp text or a voice message to this number:
LAURENCE: 0330 123 9480.
EMMA- And please start your message, whether it’s text or voice, with the word Access, because we do share the number with Newscast and other podcasts, and that will help us to find your message. So, thank you very much. You can also email us, old school, on accessall@bbc.co.uk.
NIKKI- Or braille, BSL, ASL, ISL, Makaton. Can you think of any more ways listeners can get in touch?
EMMA- I forgot to say Twitter, so that’s @´óÏó´«Ã½AccessAll. But also bottle, telepathy maybe.
NIKKI- [Singing] message in a bottle.
EMMA- Word of mouth. Tell your granny and she can tell me.Â
NIKKI- Emma?
EMMA- Yes.
NIKKI- I want to do a little quiz with you today. Is that all right?
EMMA- I don’t really like quizzes, I always come near to the bottom, but yes, that’s okay.
NIKKI- You can do this. I have faith. Here we go. How many people do you think identify as disabled in England?
EMMA- In England, well the figure that gets knocked about most is 13.9 million, but that’s for the whole of the UK, and it’s from 2016. I’m going to say 11 million.Â
NIKKI- No.
EMMA- No?
NIKKI- It’s actually 9.8 million.Â
EMMA- Oh, so it’s not gone up.Â
NIKKI- Up from 9.4 back in 2011.
EMMA- Right, so it’s not gone up as much?Â
NIKKI- No, it’s an extra 400,000 people since 2011.
EMMA- Right okay.
NIKKI- How many people do you reckon, Emma, identify as disabled in Wales?
EMMA- Oh.
NIKKI- Do you think that number has gone up or down since 2011?
EMMA- Up for sure. I’m going to say a million?
NIKKI- No, it actually hasn’t.
EMMA- What?
NIKKI- The number of disabled people in Wales has actually decreased.
EMMA- Decreased?
NIKKI- Yeah, decreased to 670,000, compared to 696,000 in 2011.
EMMA- I don’t actually get why that is or how that’s happened.Â
NIKKI- Well, I’m going to give you one final question, because you’ve done appalling today, Emma Tracey, on Fox’s quiz. Mind you, I would have done too. One final: how many people do you think identify as unpaid carers in England and Wales?
EMMA- Well, if there’s like 9 point something million disabled people in England, so 10 point something million, I’m going to say something like 7.5 million.Â
NIKKI- In England and Wales an estimated 5 million people aged five years and over provided unpaid care in 2021. That’s an estimated 5 million. But when you factor in how these figures are collated that’s actually gone down from 11.4% to 9%.Â
EMMA- It’s gone down. Where are you getting these figures from?
NIKKI- It’s all according to the Office for National Statistics, the ONS, because they’ve just released a report on the results of the 2021 census that we all filled in, looking into the lives of disabled people across England and Wales.
EMMA- Right, so the producers have just pinged me over the figures. I’m looking at them now, and there are a lot of them. So, since the 2011 census the number of people who identify as disabled in England has gone up. The number of people who identify as carers has gone down. Okay, so who’s looking after who? How does that work?Â
NIKKI- Well, to discuss this issue we are going to joined by thankfully two very smart people, Dr Miro Griffiths. Miro is a research fellow at the University of Leeds Centre for Disability Studies. And we’ve also got Katie Styles. A bit like Harry, Katie?
KATIE- Oh, if only.Â
NIKKI- No, I’d rather have you, Katie.Â
KATIE- That’s lovely.Â
NIKKI- Now, Katie, you’re from the We Care campaign for unpaid carers. Thank you both so much for joining Emma and I. Now, these ONS figures, are you surprised Miro, about them?Â
MIRO- Slightly. I thought that the number would go up considerably higher than what’s been presented. There are a couple of important things to take into account though. One is you get the age standardisation which allows for us to think about how figures will change over time due to population, due to geography and so on. It’s also worthwhile taking into account that the question has changed since 2011. So, in 2011 a different question was asked. The one that was asked in this census is more aligned with the Equality Act, which I’d got some reservations about, the way in which the question was phrased. And also it’s worthwhile pointing out, which the ONS do themselves, is that the census was done during the coronavirus pandemic, well one of the initial waves of the coronavirus pandemic, so people’s perspective of health and disability and impairment may have been impacted by that.Â
NIKKI- Yes, absolutely Miro. And you know I was thinking about the pandemic, obviously we know six out of ten of the deaths from coronavirus were disabled people; could that have anything to do with the fact that the figures haven’t increased?
MIRO- I think so. I can’t remember precisely when the census was carried out, but I think if I’m right in assuming that it was way into the pandemic, or at least into the initial phase of the pandemic, then that would be taken into account in terms of with death. Again, there are other issues as well: so people’s geography, given they may move around, they may move abroad as well, that will have impact on the figures.
EMMA- Katie, what do you make of the figures around unpaid carers?
KATIE- Well, I think you could’ve knocked me down with a feather to be honest when I saw them. But realistically I shouldn’t have been surprised that they are as low as they are, because people just don’t self-identify as carers. And as Miro said, again with the carers’ question, they have changed the wording since 2011. We were in the middle of the pandemic, so the word carer didn’t actually mean us as unpaid family carers. If you’re using the word carer and that’s actually meaning a paid care worker they’re not necessarily identifying it as something they’re doing themselves. So, yeah I think it’s had massive impact.Â
NIKKI- So, it seems a bit like both of you are saying that the questions and the way they’re worded could potentially have put certain people off truly identifying with that?Â
MIRO- I think so, yeah. So, if you take the question in disability it’s phrased in align with the Equality Act. So, it’s asking you initially do you have any physical or mental health conditions or illnesses lasting or expected to last 12 months or more. Now, that’s quite a difficult thing to understand. And also it brings in I think a lot of doubt in people’s minds about how they understand their impairment. Also the problem is that it then, once you say yes to that, they ask a supplementary question which is, do any of your conditions or illnesses reduce your ability to carry out day-to-day activities. Now, for some people there may be aspects of internalised oppression, there may be stigma associated with this, so they don’t want to self-identify because of the acceptance that they have to have about this.Â
NIKKI- I just want to go back to Katie as well, because we were talking about unpaid carers, but actually it would be good to get just a rundown of what an unpaid carer does. Do all of them get carers allowance?
KATIE- We’ve got two ends of the scale really. So, we’ve got people that are supporting family member, friends or a neighbour. So, that might be taking them to or helping them get to appointments, medical appointments, it might be providing meals, shopping, prescriptions. So, that sort of softer end of carer that we probably all recognise. But then there are people that are doing palliative caring at home, and basically are running a hospital ward in a bed at home. Only out of those 5 million, 944,000 at the moment are getting carers allowance. And just as a reminder, that is £69.70 a week. And there are all sorts of different people that are excluded from getting carers allowance. So, you only receive that, get that if you are doing 35 hours, there’s that cut-off. If you’re doing 29 or 30 hours then no, of caring a week; if you’re a younger carer, if you’re in full-time education; if you suddenly receive your state pension you can’t then claim carers allowance because that’s overlapping benefits; if you happen to earn over £138 a week, if you can manage to do your caring and hold down a job, which is increasingly difficult because there are more and more pressures on carers at the moment because of the absolute state of the NHS and social care. So, it’s a really difficult situation.Â
NIKKI- You’ve got personal experience of it, haven’t you, Katie?
KATIE- Yeah, so I’m on carers allowance myself. I care for my husband who’s got a form of motor neurone disease. I’m also helping care for my mum who lives in her own house but needs an awful lot of support to do so. So, I’ve got sandwich carer thing going on where I’m never thinking about just one person; I’ve got two people to think about.Â
EMMA- What do these new figures mean for benefits and support, or what should they mean?
KATIE- It’s way too complex. I think what I’m really worried about are all of the carers that are caring at home that don’t realise that they are caring, so they’re isolated, don’t know their rights, don’t know that there is some support, even though it is not much.Â
EMMA- So, people who don’t see themselves as carers, people who haven’t identified themselves as a carer, but who are doing lots and lots of things that if someone was to assess them they would say they were a carer?
KATIE- Yes, definitely, definitely. I mean, it takes on average two years to self-identify. So, there will be people coming out of the back of the pandemic that still haven’t identified themselves as having that role, because they just think that they’re doing something for their family or their friend or their neighbour.Â
NIKKI- Thank you so much, Katie, and thank you so much, Miro as well. Now, we’re probably going to come back to this as the next report comes in, and we’d love to hear your thoughts too. Are you surprised by the figures? Do you think something needs to be done? Please do get in touch with us. You can do that in the usual way by emailing accessall@bbc.co.uk, or a tweet, we love a tweet, @´óÏó´«Ã½AccessAll, or you can send us a WhatsApp on 0330 123 9480, starting your message with the word Access.Â
Going blind suddenly ended our next guest’s medical career back in 2013. But Dr Amit Patel is now something of a household name, and that’s thanks to social media videos that went viral. He did them with his guide dog, Kika. He’s also written a bestselling autobiography. And now he’s got the hugely popular CBeebies show called Dog Squad. I’m looking forward to hearing about that. It’s Amit Patel. Welcome to Access All, Amit.
AMIT- Thank you so much.Â
EMMA- Can I just say, Dog Squad, I’m absolutely loving it. There’s cute dogs, there are great voices, like Miriam Margolyes…
NIKKI- Oh, I love her.
EMMA- …and Georgia Tenant, who does Kika. And there’s also loads of learning in it. It’s just the perfect show for small children. You must be so proud of it.Â
AMIT- I am. The conversation I had on the way here was with the team in Glasgow about Dog Squad, and the viewing figures just absolutely blew me away. I think we came in second to Bluey.Â
EMMA- Bluey is world, world famous, all over the world, Disney Plus, everybody that I met all over Christmas loves Bluey, so to be second to that is unbelievable.Â
AMIT- We beat Spiderman over Christmas.
NIKKI- No?
AMIT- Yeah.Â
EMMA- Wow, the real superheroes.Â
AMIT- That’s it. Dog Squad is a collection of five assistance dogs, all with different abilities, and Kika’s is super sight. It’s the adventures of these dogs taking their owners around, just doing everyday tasks.
NIKKI- Taking them to massage parlours, strip clubs.
AMIT- Just the basics, you know, that stuff you do every day.
NIKKI- Very children friendly.Â
AMIT- Yes, absolutely.Â
EMMA- Well, in this clip Kika’s getting ready to take you to the train station.Â
KIKA- Ears set, waggy tail.Â
AMIT- Harness Kika.
KIKA- One last mission munch. Coming.Â
AMIT- Kika, good girl.Â
KIKA- And harness on. Now I’m mission ready. Let’s go.Â
NIKKI- Oh Kika. Let’s sort of back it up a bit because you were an A&E doctor. In 2013, wasn’t it, everything changed and you went from having 20/20 vision – is that right?
AMIT- Absolutely.Â
NIKKI- To nothing at all, practically overnight. What happened? Like explain the whole process.Â
AMIT- So, during med school I was finding it a struggle to focus on books. I used to wear glasses but my script never really changed; it was kind of constant all the way through. And when I went to the opticians they just kept telling me that I’m sat in a dim-lit library, the texts are very small, Amit you need to take more breaks and all of this stuff. But the headaches kept going and the concentration wasn’t there, until I went to see a specialist and they diagnosed me with a condition called keratoconus. The corneas of your eyes kind of protrude slightly out, they’re the windscreen of your eyes, and it was stopping the refraction of the light hitting the back of the retinas and everything. So, all they used to do is put some glass lenses onto your eyes, just to push them back into shape. But it got to a point where the lenses weren’t able to push the corneas back in, so I had my first corneal transplant. Very simple, replaced the clear coating on the front of your eye, replaced it with a donor, stitch it together, that should be it. But for whatever reason my body just kept, every six to nine months, kept rejecting my donor. So, I would have transplant after transplant after transplant. Got to my seventh, eighth transplant where I was told, Amit you can’t do anything else. Then eventually went to out to America, got my corneas grown using stem cell surgery, had them transplanted. I brought my doctors across from the States because the procedure wasn’t available here at the time: 20/20 vision. And in the two years I had that 20/20 vision with absolutely no issues I fell in love, I got married, and I lost my sight the same year I got married. It wasn’t just my sight; my voice disappeared, I disappeared, my confidence, that independence I thought I had. And it was that whole, how am I going to look after my wife, how are we going to move forward. Because we had never spoken about what we would ever do if this happened.Â
NIKKI- Yeah. So, I imagine immense pressure and worries, financial worries, your love worries, all of that. You must be a very strong character I would say, Amit. But also you loved driving cars and you loved flying planes. You’re so much more adventurous than I am; you do all extreme sports.
AMIT- It’s quite funny a lot of people even now say to me, ‘Amit, you’re a thrill junkie, you love all these adventures, what do you do now to get that thrill?’ I basically step out of my house. The moment I step out of my front door the same rush kind of hits me, because every day is different. You walk around, not just where I live, but I travel the world as a completely blind guy with a cane and with a dog, and that rush is still there. But do you know what, I’ve got used to that, it’s part of my life. And in a weird way I kind of enjoy it. I never used to be a planner. My wife is the planner. I was the one who would say, let’s do this, and kind of do it before she even had time to think about it. Now I’m the planner. I don’t like it, but it’s a necessity of being visually impaired.Â
EMMA- You were a doctor before this happened. You were really busy. You were earning decent money I would imagine. You had to learn to fill your time, but also to pay your mortgage.Â
AMIT- Absolutely.Â
EMMA- Tell me about the work side of it?
AMIT- Obviously work disappeared. I could never be frontline. And my brain doesn’t engage when I sit behind a desk for too long. So, I’ve always had to be active. Being an A&E doctor worked for me; I was out, every day was different. I think the confidence thing was a lot because I was constantly thinking that people are watching me, people are looking at me hitting things, I don’t want to be that guy. So, I would never step out the house on my own. My wife was amazing, she’d always, always be there to comfort me and say, ‘Look Amit we can do this, let’s just go out for the weekend, let’s do this, let’s do that’ and slowly get my confidence back. When I was at that stage I’m like, right now, I’m a guy who can use a screen reader, I can read braille, I can navigate, I can get on buses and trains and all of this stuff, what do I do. I want to go back into the workplace, get my head back into that work mode, and have somewhere to go and be social. It was just finding that right job. But the problem was I would be very honest, I’d write my CV, but at the end of it I’d say, I’m blind and I use a screen reader, blah, blah, blah. I didn’t get a call back for any of them, not one.Â
NIKKI- No!
AMIT- 104 jobs exactly is what I applied for. And these are admin jobs, jobs I was way over qualified for.Â
NIKKI- 104 jobs?
AMIT- 104 jobs. And obviously not getting a call back, my self-confidence kind of went down. And my wife said to me, ‘Amit, you’re being too honest, take away the fact that you’re visually impaired, leave that out’.Â
NIKKI- Yeah, yeah.Â
AMIT- So, we picked ten random applications out, filled them in again, exactly the same, left out the visually impaired, got a call back for every single one of them. But when I went for the interview for one of them, one of them said, ‘Oh your qualifications are perfect, but the fact that you didn’t disclose that you’re visually impaired you start off on the back foot, and we’re not sure if the rest of the team in the office would find this acceptable or how they would be’. And I said to them, ‘Are you looking at my qualifications or are you looking at my disability; are you looking at what I can bring into the organisation or the fact that you can’t understand what disability is or you’re not confident with it?’ It was a big bank in Canary Wharf. And a few years ago they actually called me back to do a DNI consultancy role.Â
NIKKI- Did they now?
AMIT- And it was the same guy who interviewed me.
NIKKI- No?
AMIT- Yeah. He doesn’t work there anymore. I said, ‘You don’t remember me, do you?’ And he said, ‘No, no, have we met before?’ I said, ‘This is the date we met, and you told me that I didn’t disclose the fact that I was visually impaired and you basically booted me out of the building, and now you’re here to talk to me about getting disabled people into the workplace’.Â
NIKKI- Wowzers.
AMIT- And it’s such a huge issue.
NIKKI- Well, NHS did a similar CV experiment, and the results were quite shocking.Â
AMIT- Yeah.
NIKKI- I must move on because we’ve got a lovely snoozy dog in front of me here, who I’ve turned my key off so I don’t run over by accident. Kika, you strapped a camera, didn’t you, this is how you became quite well known, to your guide dog, Kika, who’s right down there. Why did you do it? And it was a bit controversial, wasn’t it?Â
AMIT- It was, it was indeed. So, Kika was matched to me because she loved the hustle and bustle, she loved being in busy environments all the time. And there would be a situation, a busy train station, and she would just completely stop and she would sit down, maybe on my feet, her way of saying we’re not going anywhere. For me, being completely blind, I just assumed it’s because she’s waiting for the crowds to disperse, waiting to get her bearings. One day this happened and a lady came over and she said, ‘I don’t think you realise but your dog was just swiped with an umbrella over her face’. So, we put a camera on her, and the next day we did our route into work we caught three people swiping at her, pushing her out of the way, barging her in front of the escalators, or walking towards her, making her walk closer to the edge of the track, of the platform.Â
NIKKI- No!
AMIT- And these are people literally looking at her and making her swerve because they want to see what she does. It’s not so much what they do to Kika as well, it’s how people treat disabled people. But I think it made it even worse when I go round with my kids. I don’t see people pointing and staring or any of that; my six year old does and my three year old does. So, when you walk into a shop and the security guard’s chasing you saying, ‘No dogs! No dogs!’ they’re like, ‘Well dad, why are they doing this, why are we getting chucked out?’Â
EMMA- Amit, when you put the videos up online what was the response from the general public?Â
AMIT- I think a lot of people who saw the video were shocked, just the fact that it happens. I got a lot of negative responses from the VI community saying this happens to me all the time, it doesn’t need to be something we talk about, just move on, get on with your life. Once or twice I can deal with. When it’s constantly happening I’m thinking well, society should know better. And if nobody wants to talk about it that’s fine, but I’m going to talk about it. And if I make another commuter think about their journey slightly differently or be more considerate isn’t it better for everybody?
NIKKI- You wrote a biography, hugely popular, wasn’t it? And that biography are there talks it’s going to be made into a film?
AMIT- It’s already the started.Â
NIKKI- Stop it.Â
AMIT- The script has already been written. I think it’s 99% there. We had Disney, we had Amazon, all saying we want this into a film. But with the bigger companies it’s kind of out of our hands, in their hands, and they can dramatize it. Even one talk was we’ll take the story out of London and put it in New York, and not have an Asian family but we’ll have a Chinese family because that’s what’s trendy. I’m like, well that’s not me. We’ve got a producer, Rajita Shah, who released a film called Love Sarah during lockdown, which did amazingly well. And she’s basically said, well Amit, we can make this into what you think it deserves. And I’m hoping we can add a bit of east meets west. I want a big Bollywood number in there, just for the sake of it.
EMMA- Well, they’re going to dramatize their wedding which, from reading your book, was an absolute extravaganza. But it’s really important for you to have the cultural bit in there. And especially I suppose connected with the guide dog, because it makes it quite different, doesn’t it?
AMIT- Yes, it does. I had no idea how the Asian community would react to having Kika and that. I never even thought about it. It was when we went to the temple for the first time, it was very much tie up Kika to the lamppost. And it’s the whole changing mind-sets in the culture, because people don’t like you rocking the boat; they don’t like that. I’m the first one there to rock the boat, I’m literally there changing: why don’t you think differently? Why do you think about it the way you do? Why can’t we change and adapt with the times? The whole policy in having Kika being able to go to the temple took a year and a half. And that’s worldwide now. I went to New York, I walked up the Hindu temple and they said, ‘We know who you are’.Â
NIKKI- Wow.
AMIT- And I said, ‘What do you mean?’ and they said, ‘Well, our policy papers are full of talking about guide dogs, assistance dogs, and your picture is on there’.Â
NIKKI- Amit, you’ve been honestly spectacular. Thank you so much.Â
EMMA- Thank you Dr Amit Patel.Â
NIKKI- And come back when the film is due to be released.Â
AMIT- Absolutely.
NIKKI- Emma and I could come to the premier. That was a great interview with Dr Amit, wasn’t it, Em?
EMMA- Oh, such an interesting man, honestly.Â
NIKKI- I know I really like him, I really like him.Â
EMMA- It’s really interesting to hear about someone who’s lost their sight for someone who’s never had sight.Â
NIKKI- Exactly. He is my new favourite blind person.Â
EMMA- Huh?
NIKKI- I’m joking, Emma, I’m joking. But he is pretty amazing, as are you, I’m not comparing.Â
EMMA- Oh yeah, yeah, try and dig yourself out of that hole now. But he is amazing. He got a guide dog, he learned all the blindy stuff, he’s got a great job, and he’s so confident. And really, what a great man to talk to. Well done, Amit.
NIKKI- Thank you so much for listening. We’ll be back next week for more of this. Goodbye.
EMMA- Goodbye.
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Access All: Disability News and Mental Health
Weekly podcast about mental health, wellbeing and disabled people.