大象传媒

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24th April 2024

bbc.co.uk/accessall

Access All 鈥� episode 101

Presented by Emma Tracey

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EMMA-听听听听听听听听听听 I really, really do genuinely wish I knew British Sign Language, BSL, because if I did I would sign to you hello. It鈥檚 Access All, I鈥檓 Emma, and we have six fabulous new BSL films on the 大象传媒 Sounds YouTube channel which are highlights of some of the greatest interviews we鈥檝e done over the last couple of months. We鈥檝e got people like Bryony Gordon, Bradley Riches, Molly from The Traitors, they鈥檙e all there. So, if you know somebody who loves BSL, who knows BSL and who fancies getting a bit of our podcast tell them to get on to that 大象传媒 Sounds YouTube channel and have a look at those fabulous films. On with the show.

MUSIC-听听听听听听听听听听 Theme music.

EMMA-听听听听听听听听听听 Welcome to Access All, the 大象传媒鈥檚 weekly disability and mental health podcast. I鈥檓 Emma Tracey, and this week we are going to be digging down into some of the big disability news stories. And honestly, there have been so many to choose from this week.

听听听听听听听听听听听听听听听听听听听听听听 The government has consistently missed their targets to reduce the numbers of people with learning disabilities and/or autistic people who are needlessly detained in mental health units. We鈥檒l be talking about that in a moment. We know there鈥檚 lots of jitteriness when politicians start talking about changes to benefits, so we will be going through Rishi Sunak鈥檚 speech about work related benefits and Personal Independence Payments later. And I also will be sitting down to chat to Shani Dhanda, the most powerful and influential disabled person in the UK according to the Shaw Power 100 list. And she鈥檒l be telling me about her new Motivation show on the 大象传媒 Asian Network.

听听听听听听听听听听听听听听听听听听听听听听 Don鈥檛 forget to subscribe to us on 大象传媒 Sounds or wherever you get your podcasts from. And do contact me; I love to hear from you. We are accessall@bbc.co.uk.

听听听听听听听听听听听听听听听听听听听听听听 It鈥檚 been a busy week, as I鈥檝e said, in disability news. And one of the stories that we鈥檝e been thinking about is the fact that NHS England has confirmed that nearly 2,050 people with learning disabilities and/or autistic people are still being detained in mental health hospitals when they don鈥檛 need to be. The government pledged to bring this number to below 1,445 by the end of March 2024, but obviously this hasn鈥檛 happened. And on the line to talk to us about it is Dan Scorer, the head of policy at learning disability charity Mencap. Hi Dan, how are you doing?

DAN-听听听听听听听听听听听听听 Hi, I鈥檓 good thank you.

EMMA-听听听听听听听听听听 So, what鈥檚 happening here Dan?

DAN-听听听听听听听听听听听听听 Well, as you said back in 2019 the government and the NHS set a target to reduce the number of people with a learning disability and autistic people trapped in mental health hospitals, mainly detained under the Mental Health Act, to reduce that number of people by 50% by the end of March just gone. Now, that hasn鈥檛 happened; there are still many hundreds of people who are still trapped in mental health hospitals who shouldn鈥檛 be. And what we鈥檙e seeing across the country is the integrated care systems, the 42 NHS areas across England, the majority are just not making the progress needed, nearly three quarters have not achieved the reduction in the numbers of people that they should have done. And we鈥檙e seeing about 30% of areas making no progress or actually going backwards.

EMMA-听听听听听听听听听听 And just to put a bit of context into this: the government started making targets for lessening the numbers of people with learning disabilities and/or autistic people in mental health hospitals after the Winterbourne View scandal. Tell us about that scandal, Dan.

DAN-听听听听听听听听听听听听听 So, that scandal was exposed by the 大象传媒鈥檚 Panorama programme through undercover reporting back in 2011. And that showed the appalling physical abuse, neglect and ill-treatment of people with a learning disability and autistic people at a place called Winterbourne View near Bristol. And a number of staff were charged with criminal offences. Six were jailed for up to two years for the appalling way that they treated people in that setting. And that really shone a light on the number of people with a learning disability and autistic people trapped in these kinds of settings. And after that the government put in place a two-year programme to get people out of these places and support them in the community. And that just didn鈥檛 happen. In 2015 NHS England led on another plan that set targets through to 2019 to reduce numbers by 35% to 50%, and again that didn鈥檛 happen. And then in 2019 the NHS long-term plan was published committing to that 50% reduction by the end of March just gone, which also hasn鈥檛 happened.

EMMA-听听听听听听听听听听 So, the government is constantly missing their own targets. Why is this happening? Why are they missing the targets? What鈥檚 causing this, from your perspective?

DAN-听听听听听听听听听听听听听 Well, we鈥檙e just not seeing the progress needed across the country in developing the right support in the community. So, we know there are hundreds of people trapped in units for two reasons: they haven鈥檛 got the social care support that鈥檚 needed in the community, forcing them to come out; and they haven鈥檛 got the right housing in place in the community for them. So, there simply just has not been the investment needed in the housing and the specialist staff teams that are needed in communities. So, we鈥檙e seeing both people trapped in units and also more people going in because there just aren鈥檛 the right early intervention and crisis support services in the community to support people and stop them going into these hospitals.

EMMA-听听听听听听听听听听 Well, one of the people you鈥檙e talking about there is a lady we鈥檙e calling Rose, who鈥檚 35 and has a learning disability. We鈥檙e able to speak to Rose鈥檚 mum, Sarah. Thank you so much for joining us. Sarah, your daughter has a learning disability, what does that mean for her and her life?

SARAH-听听听听听听听听听 She鈥檚 uneven development and her mental abilities didn鈥檛 grow at the same speed or at the right time. So, it means that she doesn鈥檛 understand a lot of what is said to her. She can talk very well, and people think she is much more able than she is. She鈥檚 able in lots of ways but she doesn鈥檛 understand a lot of what鈥檚 going on. She just needs help with everything she does. She needs guidance and support.

EMMA-听听听听听听听听听听 She鈥檚 been in hospital since 2014 and is currently two hours away from you by car. How did she end up in hospital?

SARAH-听听听听听听听听听 She had been in a placement that broke down, a supported living placement she鈥檚 been moved to. And when she was there it was fine for a short while, but she didn鈥檛 have the level of attention she required, she didn鈥檛 have the level of help, and in the end she was moved. We do go and see her, I try to go at least every three weeks.

EMMA-听听听听听听听听听听 So, she鈥檚 two hours away from you now?

SARAH-听听听听听听听听听 Yes.

EMMA-听听听听听听听听听听 And what is life like for your daughter Rose in hospital as far as you know, because you鈥檙e obviously not able to see her that much?

SARAH-听听听听听听听听听 She鈥檚 fine. She鈥檚 looked after. But she doesn鈥檛 live a life of her own. She has not got the support just with day-to-day living that she would like. It鈥檚 a hospital and so she is very institutionalised because there is nowhere for her to go, there is no accommodation available. Everything she does is so regimented I suppose. She can鈥檛 do anything on impulse. If she wants to go for a walk she has to wait to get permission; she has to be signed out to do it; she has to have a carer to go with her. She can鈥檛 just say, oh I fancy walking down the shop and buying myself a bar of chocolate. She has to get permission and it has to be signed for and she has to, as I say, be accompanied every time. And yes, she does need care, but she doesn鈥檛 need that level of restraint.

EMMA-听听听听听听听听听听 You go to see her, what鈥檚 it like?

SARAH-听听听听听听听听听 Secure. So, you go through big metal gates to go in. You have to buzz the buzzer first and get permission to go in. She鈥檚 brought out to meet me and we go out for lunch with carer. There is nowhere very homely. We sit in what they call the therapy kitchen, which is a table and chairs, and that鈥檚 it. It鈥檚 not comfy.

EMMA-听听听听听听听听听听 And this has been her life for ten years. What are your hopes for Rose, Sarah?

SARAH-听听听听听听听听听 I hoped she would be provided with accommodation and have the 24/7 support that she requires, but from people that are constant and people that she knows, can get to know and build a relationship with, and that she can live her own life and indulge in her hobbies with encouragement.

EMMA-听听听听听听听听听听 What are her hobbies?

SARAH-听听听听听听听听听 Oh, she likes singing. She likes going to church, particularly the sort of church where it鈥檚 cheerful and upbeat. She likes painting and drawing. And she likes pottering around outdoors, a bit of gardening. She likes anything physical, any little activities that she can do.

EMMA-听听听听听听听听听听 And obviously, you know, to see her family. It must have had a massive impact on all you all of this?

SARAH-听听听听听听听听听 Yes, it is very difficult to see the family. And in fact she can鈥檛 see her nieces except now that she can come here for an afternoon. So, if they are down here from Yorkshire then she can come over to see her brother and her nieces at that point.

EMMA-听听听听听听听听听听 Has she met her nieces? Has she been able to see her nieces?

SARAH-听听听听听听听听听 She has done now, yes. But for the first two or three years of their lives she couldn鈥檛 even see them because they鈥檙e not allowed into the hospital.

EMMA-听听听听听听听听听听 We鈥檙e going to hear now from Alexis Quinn who鈥檚 autistic and spent more than three and a half years in a mental health facility before escaping. How long we鈥檙e you in hospital for?

ALEXIS-听听听听听听听听 Just shy of four years.

EMMA-听听听听听听听听听听 Right. That鈥檚 a long time, isn鈥檛 it?

ALEXIS-听听听听听听听听 It鈥檚 a very long time. And I think again, you know, hospital staff when you are admitted to a hospital they鈥檙e often not a specialist or they don鈥檛 have training in autism and so, again, those sensory sensitivities that I was experiencing in the community were heightened in hospital. Most public know that autistic people need routine, structure, predictability, and hospitals are the opposite: they鈥檙e chaotic, they鈥檙e noisy, they鈥檙e sensory driven. And so as soon as I was admitted everything just got a whole lot worse, which was unimaginable for me at the time. I thought I was going somewhere for some care and some treatment, you know, and where I might experience some understanding, and in fact it was the very opposite. And so what happened is I got stuck in a cycle of sensory overload, I鈥檇 have a meltdown, six to ten men would hold me on the floor, they鈥檇 pull my pants down, they鈥檇 inject me with powerful sedative medication and then they鈥檇 take me to a room where I鈥檇 be locked in. And I wouldn鈥檛 know when I would get out, so I could be there for days, weeks, months even. And that cycle just kept repeating. And when I was allowed out I would have this anxiety about when the next sensory overload would come.

EMMA-听听听听听听听听听听 So, they continued to see your reactions as mental health related rather than as reactions from an autistic person to being in this setting?

ALEXIS-听听听听听听听听 I think what we have is a situation where staff aren鈥檛 trained in autism, and we have a situation where there鈥檚 gross understaffing. And so where you鈥檝e got 18 very distressed people on a ward all creating, you know, sensory chaos, noise, unpredictability you have a situation that can鈥檛 be managed very effectively with probably one nurse and a couple of healthcare assistants.

EMMA-听听听听听听听听听听 What would have been appropriate for you? What could have prevented this from happening?

ALEXIS-听听听听听听听听 What I would say is that I needed help and support, some psychology to understand what was going on for me; I needed some autistic specific occupational therapy, probably some speech and language; and I might have needed somebody to come into my house and just give me a bit of a hand with what was going on. I don鈥檛 think it would have cost very much money. At the time I was a teacher. You鈥檙e looking at a situation really which was perfectly manageable had the right support been available at the right time.

EMMA-听听听听听听听听听听 That was Alexis Quinn telling her story. Now, Dan Scorer from Mencap, learning disability charity, and Sarah, mum of Rose who is in a mental health hospital, are still with me. What needs to happen to change things for people like Rose?

DAN-听听听听听听听听听听听听听 We need to see the investment in every part of the country in the housing and support in the community so that people like Rose and hundreds of others like her can be released from these institutions where they should not be. They do not need to be there; there is no therapeutic or other benefit from them being there. They, like anyone else, should be able to live their lives in the community with the support they need.

EMMA-听听听听听听听听听听 And what is a community place? What does that look like for someone who might have been in hospital for ten years?

DAN-听听听听听听听听听听听听听 So, we鈥檙e talking about people living in an ordinary house on an ordinary street, with the staff support, the care staff they need, potentially around the clock if they have that level of support need; take part in activities, take part in their interests; living a life, a free life in the community like all of us expect to; not having to ask permission to leave, living behind locked doors. This is the kind of life everyone expects to lead.

EMMA-听听听听听听听听听听 And we鈥檙e not talking about money today, but often someone鈥檚 place in the community would be a lot cheaper than their place in hospital?

DAN-听听听听听听听听听听听听听 That鈥檚 possible over time. Fundamentally this is about over half a billion pounds a year being spent on buying the wrong kind of care.

EMMA-听听听听听听听听听听 Dan Scorer and Sarah, thank you so much.

听听听听听听听听听听听听听听听听听听听听听听 I think you listeners knew we were going to talk about this story this week. Yes, of course, it鈥檚 the speech Prime Minister Rishi Sunak made late last year where he laid out some of the issues he sees as being in the benefits system. And I tell you what, our reporter Drew Hyndman is here to help me understand what he said and talk about what he means. Drew, thank you for being here. There are a lot of jitters amongst disabled people when politicians start talking about changes to benefits, particularly Personal Independence Payments. What did the Prime Minister actually say in his speech?

DREW-听听听听听听听听听听听 So, the Prime Minister focused on three things: fit notes, the work capability assessment and PIP, Personal Independence Payments. The essence of the speech was he wants more people to be working. At the moment about half the people who have work limiting conditions, as they鈥檙e called, are unemployed long term, and about half of those are in work. He wants to increase the number of people who are in work, and also have the people that are in work working more hours per week.

EMMA-听听听听听听听听听听 Let鈥檚 talk about Personal Independence Payments. It鈥檚 something that many, many disabled people receive, whether they鈥檙e in work or not in work, because it鈥檚 not relating to whether you鈥檙e employed or not, is it?

DREW-听听听听听听听听听听听 No. So, it stood out in the speech because, unlike the work capability assessments and the fit notes, it鈥檚 not to do with your ability to work, it鈥檚 to do with whether you meet the criteria that you are assessed with. So, you are given this money to help with the extra cost that you may incur from being disabled.

EMMA-听听听听听听听听听听 Drew, you asked people to tell you what they use their Personal Independence Payment for because we know it鈥檚 really, really important to a lot of people and close to their hearts. What did they tell you?

DREW-听听听听听听听听听听听 Yeah, so I put a tweet out late last night before the recording, and had a couple of replies. Very grateful to those people. I woke up to an overwhelming response, about 140 people, and there was a whole list. The common ones that were coming up were: prescription charges because you often have extra medication; taxis because public transport isn鈥檛 accessible; repairs and insurance for mobility aids, which is obviously an ongoing cost after the initial outlay of that aid; increasing utility bills, either to charge or run a piece of equipment, but also to make sure that temperatures are kept at the right level for certain conditions; and also things like private medical care a lot of people were saying.

EMMA-听听听听听听听听听听 Oh, interesting.

DREW-听听听听听听听听听听听 Because of the length of NHS waiting lists, and also the NHS doesn鈥檛 offer every medication, every kind of care, and so a lot of people were saying that they use it to pay for private things like physiotherapy and stuff like that.

EMMA-听听听听听听听听听听 That鈥檚 really, really interesting. And of course you asked because Rishi Sunak was talking about potentially changing Personal Independence Payments.

DREW-听听听听听听听听听听听 So, he says he鈥檚 worried about it being misused, and he also thinks that people with, say, mental health conditions maybe don鈥檛 need the same level of payout as those who are physically disabled. He鈥檚 proposing several things, and this is going up for consultation 鈥� these changes aren鈥檛 set in stone 鈥� he鈥檚 proposing things such as instead of cash payments offering people access to talking therapies and under support.

EMMA-听听听听听听听听听听 And what are disability charities saying about Sunak鈥檚 proposals?

DREW-听听听听听听听听听听听 They鈥檝e reacted pretty strongly. Scope called it a full-on assault on disabled people. The charity Sense said that he was portraying disabled people as shirkers. We also spoke to Dan Scorer from Mencap from earlier in the programme and he had this to say in response:

DAN-听听听听听听听听听听听听听 So, we鈥檙e extremely worried by what the government have been saying about potentially reducing the numbers of people in future that will be eligible for Personal Independence Payment, which is so vital in terms of going some way to meeting the extra costs that disabled people face.

EMMA-听听听听听听听听听听 And of course we did contact the government about these proposals, and a spokesperson from the Department for Work and Pensions said:听

DWP-听听听听听听听听听听听听听 Our welfare reforms will modernise the support available for those who need it the most, ensuring the welfare system changes lives for the better. Our 拢2.5 billion Back to Work plan will help over a million people, including those with disabilities and long-term health conditions to break down barriers to work. This includes helping almost 400,000 extra people access mental health treatment through NHS talking therapies.

EMMA-听听听听听听听听听听 Of course Rishi Sunak has announced all these things, which would only go through any further if he gets in to power. We are in an election year. What are the other parties saying about what he鈥檚 been proposing?

DREW-听听听听听听听听听听听 So, the other major parties in England and Wales haven鈥檛 released their policies on disability benefits just yet for the upcoming elections, but there has been some pretty broad criticism, much like the disability charities. Labour have claimed that the focus should be on NHS waiting lists, and this was echoed by the Lib Dems who even called the speech desperate. And the Greens added that the government shouldn鈥檛 be blaming people who are ill. So, all of them saying that the focus should be on NHS waiting lists rather than people claiming benefits.

EMMA-听听听听听听听听听听 It is an election year, Drew, and Rishi Sunak seems to be saying things here that disabled people are not going to want to hear. Is he thinking about the disabled vote? You know, disabled people vote too.

DREW-听听听听听听听听听听听 Yes, they do. And you can only speculate, but there are roughly 3 million people who claim PIP, but there are about 16 million disabled people in the UK as a whole. So, even as a sort of disabled constituency the number of people affected by changes to PIP or the work capability assessment is relatively small. So, as a voting pool it isn鈥檛 necessarily going to alienate every single voter. And indeed for people on PIP it may not factor into every single one of their decisions when it comes to taking a part at the ballot box.

EMMA-听听听听听听听听听听 But it might appeal to people who worry that there are things that need to change about benefits?

DREW-听听听听听听听听听听听 Yes, and Rishi Sunak pointed out, based on projections, that the PIP spending will increase by 50% in the coming years if nothing is done to change it. And so for some people that is a concern, the amount that we spend on benefits and balancing that with taxation levels for people that are in work.

EMMA-听听听听听听听听听听 Drew, thank you for explaining all this to me and laying it out so clearly.

听听听听听听听听听听听听听听听听听听听听听听 Now for something completely different. As you know, here on Access All we like to chat to the movers and the shakers of the disability world, so it made complete sense to have Shani Dhanda on the podcast. She is top of the Shaw Trust Power 100 disability list. Here鈥檚 our chat:

听听听听听听听听听听听听听听听听听听听听听听 Shani Dhanda.

SHANI-听听听听听听听听听听 Hi [laughs].

EMMA-听听听听听听听听听听 Hi. Are you the most powerful disabled person in the UK right now?

SHANI-听听听听听听听听听听 Ah, it feels like such a scary title!

EMMA-听听听听听听听听听听 [Laughs].

SHANI-听听听听听听听听听听 No, I don鈥檛 think so. I think, you know, it鈥檚 definitely a joint effort, right? It鈥檚 lovely to be recognised though by the Shaw Trust. It鈥檚 a very big title with I feel like a lot of responsibility, if that makes sense.

EMMA-听听听听听听听听听听 Yeah. And now you are the new host of the Motivation show on 大象传媒 Asian Network.

SHANI-听听听听听听听听听听 I am, and I鈥檓 so excited about it!

EMMA-听听听听听听听听听听 Why are you so excited? What鈥檚 so exciting about it?

SHANI-听听听听听听听听听听 I have always contributed as a guest to lots of shows, and now it just feels amazing to be on the other side, and I think perhaps be the first visibly disabled presenter.

EMMA-听听听听听听听听听听 On the Asian Network?

SHANI-听听听听听听听听听听 I think so.

EMMA-听听听听听听听听听听 Well, I think so too. Let鈥檚 hear a clip of you on the Asian Network:

[Clip]

SHANI-听听听听听听听听听听 It鈥檚 Shani on Asia Network Motivation. And today鈥檚 show is all about setting boundaries. Let鈥檚 kick things off by highlighting the importance of setting them. Boundaries aren鈥檛 just about saying no; they鈥檙e about creating space for what truly matters in your life. It鈥檚 like drawing a line in the sand and saying this is what I stand for and this is what I won鈥檛 tolerate. A few boundaries I鈥�

[End of clip]

EMMA-听听听听听听听听听听 Oh, don鈥檛 fade out! I want to hear the rest of the boundaries.

SHANI-听听听听听听听听听听 [Laughs].

EMMA-听听听听听听听听听听 That鈥檚 so interesting. I want to talk to you about boundaries, because that clip was from the show just before this recording and you focused on boundaries. How important is it for disabled people to set boundaries?

SHANI-听听听听听听听听听听 I think it鈥檚 something that鈥檚 so important that, you know, most people don鈥檛 prioritise, whether you鈥檙e disabled or not. And I think my life has been so much more healthier in so many ways [laughs] as a result of putting boundaries in place, you know. I mean healthier in all its forms: my emotional health, my mental health and my physical health. But it isn鈥檛 something easy to do.

EMMA-听听听听听听听听听听 So, what boundaries, other than the phone notifications, do you put in place?

SHANI-听听听听听听听听听听 I鈥檓 not afraid to say no if I don鈥檛 want to do something, if I don鈥檛 want to go somewhere, or if I鈥檓 no longer able to. And I spent a lot of time feeling really bad about those things. But if I physically can鈥檛 then I can鈥檛.

EMMA-听听听听听听听听听听 And in the studio on 大象传媒 Asian Network you get to drive the desk, you said you play your own music and everything, what adaptations did they put in place for you?

SHANI-听听听听听听听听听听 Well, as soon as I walked into the studio the desks were height adjustable.

EMMA-听听听听听听听听听听 What?!

SHANI-听听听听听听听听听听 Which blew my mind away. I didn鈥檛 know that. So, that really massively helped.

EMMA-听听听听听听听听听听 Is that in our radio station? I don鈥檛 think that鈥檚 in many radio stations. I鈥檝e never seen an adjustable desk in a radio studio.

SHANI-听听听听听听听听听听 I know. I think it鈥檚 in the newer ones.

EMMA-听听听听听听听听听听 Yeah, our studio manager, Dave, says he has seen it.

SHANI-听听听听听听听听听听 Ah.

EMMA-听听听听听听听听听听 And why are they adjustable then?

SHANI-听听听听听听听听听听 I think it鈥檚 because so many different people use them, and I guess people want to sit or stand. And it鈥檚 just an example of when you give people flexibility it will suit most people鈥檚 needs.

EMMA-听听听听听听听听听听 So, it鈥檚 actually kind of ironic because it鈥檚 because lots of deejays like to stand up that the desk is adjustable, and it鈥檚 worked well for you.

SHANI-听听听听听听听听听听 Absolutely. I think that鈥檚 been the biggest thing that has helped. But also the team have been brilliant, and I haven鈥檛 needed many other adjustments really.

EMMA-听听听听听听听听听听 That鈥檚 great. and it鈥檚 quite important, isn鈥檛 it, for disabled people, but for someone who鈥檚 of South Asian origin and disabled as well, to be in these mainstream places? Like you鈥檝e been on Rip Off Britain, you did a cameo in EastEnders.

SHANI-听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 Obviously being on the Shaw Power 100 is important, and being in disability space is important. But how important is it to be in the kind of mainstream spaces too?

SHANI-听听听听听听听听听听 I think that鈥檚 where we get to really influence change. But it is also a bit of a unique, and a little difficult as well, a bit of a difficult space to occupy because the first thing immediately people notice about me is that I have a short stature. So, I feel like people do make assumptions, and then I get pigeonholed into only talking about disability related topics or covering disability related stories. And that鈥檚 something that I really love about the Asian Network Motivation show, it鈥檚 nothing to do about disability [laughs].

EMMA-听听听听听听听听听听 Now, we鈥檝e talked about Shani the broadcaster and Shani, a little bit about the advocate, we鈥檒l talk a little bit more about that later. So, tell me a little bit about your early life before you became famous, Shani Dhanda [laughter]. Where were you born? Where did you grow up? What was life like for you?

SHANI-听听听听听听听听听听 Okay, cool. So, I鈥檓 a really proud Brummie. I attended a special needs primary school, absolutely loved it. You know, when people ask me, 鈥榃hy did you go to a special needs primary school?鈥� it鈥檚 because that was the only option for me to have an education at that time.

EMMA-听听听听听听听听听听 So, was that the only place you were offered, your parents were offered?

SHANI-听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 And your parents were probably like my parents, they didn鈥檛 know鈥�

SHANI-听听听听听听听听听听 Exactly.

EMMA-听听听听听听听听听听 鈥� much about disability or special school or mainstream school.

SHANI-听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 I went to a special school as well, and they weren鈥檛 given any other information other than that.

SHANI-听听听听听听听听听听 That鈥檚 right, yeah.

EMMA-听听听听听听听听听听 So, you end up in this big secondary school in Birmingham.

SHANI-听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 So, there鈥檚 probably lots of diversity. But you鈥檙e a disabled South Asian teenager, female in this massive secondary school. What were the complexities there at school and at home really?

SHANI-听听听听听听听听听听 I wasn鈥檛 allowed to go on a Year 9 trip, a residential trip, because they told me that the insurance wouldn鈥檛 cover me. I didn鈥檛 know that they weren鈥檛 allowed to say that and that I was essentially being discriminated against. But I didn鈥檛 know about the Equality Act and neither did my parents or probably anybody around me at that time. So, there were those kinds of instances where I look back and I think wow, if only I knew what I know now [laughs].

EMMA-听听听听听听听听听听 What I know now, yeah.

SHANI-听听听听听听听听听听 But I really enjoyed it. I was a popular student. I didn鈥檛 know if I鈥檇 ever get any GCSEs, but I scraped by. I got 11 GCSEs which I鈥檓 still so proud of that [laughs].

EMMA-听听听听听听听听听听 Yeah. And what about being a disabled person in your family_ and in your community?

SHANI-听听听听听听听听听听 Yeah, so disability faces an even further sense of stigma in the South Asian community. I was brought up in a really big community, and my family are very sociable so I鈥檓 very lucky that my parents never just decided to leave me at home or keep me at听 home, because many of the parents in my community did and have. But what that meant is I didn鈥檛 know any other disabled people in my community, so there were definitely times of loneliness because yes, like, your family are with you but they don鈥檛 quite get it.

EMMA-听听听听听听听听听听 And how did it change? How did it go from you not expecting what you deserved and not knowing to fight for things? When did you start advocating for yourself?

SHANI-听听听听听听听听听听 So, if you had met me at 20 I hated my disability identity. At 16 I really struggled to get a job, and I didn鈥檛 even get an interview until I removed any mention of my condition from my covering letter, and this was after applying for over 100 jobs. So, I had gone through lots of different challenges. I think my early 20s I was just like well this is crap, there鈥檚 nothing.

EMMA-听听听听听听听听听听 Kind of rock bottom.

SHANI-听听听听听听听听听听 Yeah, really rock bottom actually.

EMMA-听听听听听听听听听听 So, you had no job, you didn鈥檛 know what to do.

SHANI-听听听听听听听听听听 I did have a job but it took me very, you know.

EMMA-听听听听听听听听听听 Okay. What did you do?

SHANI-听听听听听听听听听听 [Laughs] my first job was selling photography packages. It was telesales. I was so bad at it!

EMMA-听听听听听听听听听听 Oh really? You鈥檙e not a salesperson? You are a salesperson, you totally are!

SHANI-听听听听听听听听听听 Oh, but I was na茂ve then, I didn鈥檛 know what I was doing. But anyway I got the job, I got the experience, that was great. I got to earn some money. It鈥檚 expensive being disabled. And I just wanted to be like my peers, you know, and enjoy my life while I was at college. So, yeah, I really hated my disability identity. Stumbled across the Social Model by accident and it changed my life.

EMMA-听听听听听听听听听听 Okay, explain the Social Model.

SHANI-听听听听听听听听听听 The Social Model talks about how you may be born with a condition or an impairment or you may acquire one throughout your life, but the majority of the disabling factors in life are barriers and bias that we face in society, that could be physical barriers, attitudinal barriers, cultural barriers. And it just really made sense. I was like, yeah, it鈥檚 not my fault that I鈥檓 the height of a four year-old and therefore everybody blames me for the things that I can鈥檛 do; it鈥檚 because people haven鈥檛 thought about my needs. I very visibly live at lots of different intersections, I鈥檓 a South Asian disabled woman. And for a very long time people kept telling me, oh you鈥檙e hard to reach, you're under-represented, you鈥檙e this, you鈥檙e that, almost making me feel guilty about the things that make me who I am. And it took me a really long time to unlearn that and realise that those are the things that are my greatest strengths. I don鈥檛 buy this that people are under-represented; I think we are over-excluded.

EMMA-听听听听听听听听听听 Oh, I like it, over-excluded.

SHANI-听听听听听听听听听听 Yeah, let me explain what I mean. So, I鈥檓 South Asian, the South Asian community is the second largest population in this country, the issue isn鈥檛 that there鈥檚 not enough of us. There鈥檚 loads of us. The disability community we make up a quarter of the population one in four people, but the issue isn鈥檛 that there鈥檚 not enough of us. There鈥檚 loads of us! And, you know, being a woman, there鈥檚 loads of them around too. So, I think for me it鈥檚 the simple flipping of the narrative.

EMMA-听听听听听听听听听听 Dr Shani Dhanda it鈥檚 been an absolute pleasure to speak to you.

SHANI-听听听听听听听听听听 Thank you.

EMMA-听听听听听听听听听听 You鈥檝e just heard Shani Dhanda. Brilliant. That鈥檚 your lot, people. Please contact me. I love to hear from you. You can tell me anything, but this week particularly I鈥檇 love to hear about what help and support you鈥檝e had in exams or what you鈥檝e been asking for, what your children have been asking for. Or if you鈥檙e like me and it鈥檚 been decades since you鈥檝e been in that exam hall, tell me what was around when you were a disabled kid, tell me what you got: how much extra time; how many people were in your exam room; did you have someone sitting right there for you the whole time; did it make any difference. We want to talk about that next week so we鈥檇 love to hear from you.

听听听听听听听听听听听听听听听听听听听听听听 We are on WhatsApp. Just pop the word Access before your message and send it to 0330 123 9480. We are on email accessall@bbc.co.uk. And we are 大象传媒AccessAll on the socials. Thanks for listening and see you next week. Bye.

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