鲍鱼tv

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NIKKI - Hello, and welcome to the Ouch podcast. I鈥檓 Nikki Fox, disability correspondent for 鲍鱼tv News, and presenter of 鲍鱼tv One鈥檚 consumer rights show, 鈥榃atchdog鈥�, alongside my very good friend, Matt Allwright. Now, this is my first time presenting a podcast, so wish me luck, because I鈥檓 going to need it. I can guarantee it won鈥檛 be the most polished episode you鈥檒l ever hear, but I鈥檓 excited, so fingers crossed it will, at the very least, be entertaining. Okay, here we go.

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[Jingle: Ouch]

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Now, on 8th November 1995 a law was passed designed to stop discrimination on the grounds of disability. The Disability Discrimination Act, or DDA, covered discrimination in the workplace and also brought in some consumer protections, but it didn鈥檛 immediately give access to transport. In addition, it had a timetable for a rollout on matters such as the built environment and education, some of which stretched 25 years into the future. This law was absorbed into the Equality Act in 2010, although it鈥檚 worth mentioning the DDA is still active in Northern Ireland. We鈥檙e a quarter of a century on, so it seems like a good time to look at the impact the Disability Discrimination Act has had on the disabled people whose rights it was meant to protect.

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Now, I am joined by Holly Scott-Gardner who鈥檚 a 26 year old disability rights advocate and postgraduate student, and has advocated for the rights of disabled people in Westminster and at the European Parliament. Blimey, Holly. Now, I鈥檓 sad we鈥檝e never met but I have been stalking you online. Don鈥檛 be nervous.

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HOLLY - Er, I鈥檓 not sure I鈥檓 nervous, but I do wonder what you鈥檝e found. [laughs]

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Nikki - We鈥檒l talk about that after the recording. I鈥檓 joking. And we鈥檙e also joined by Mik Scarlet. Now, I adore you, Mik. Mik is a musician, journalist, a quality consultant, and was the UK鈥檚 first disabled kids TV presenter, and he鈥檚 way better than me.

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mik - [laughs] Now that鈥檚 not true.

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nikki - No, it鈥檚 true. He鈥檚 in his 50s which I actually cannot believe, Mik, because you look so good for鈥� Well, I鈥檓 not even going to ask whereabouts you are in your 50s, but you were a young adult when the law was passed. Lovely chatting to you, Mik. It鈥檚 been a long time.

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mik - And you. Yes, in fact, it鈥檚 just occurred to me that the DDA has been in the exact same amount of time that I鈥檝e been with my wife.

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nikki - Oh!

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Mik - So that鈥檚 quite amazing. Yeah, we met 25 years ago, so ah.

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NIKKI - So romantic鈥�

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MIK - I think I got a better deal with the wife than I did with the DDA somehow, but we鈥檒l talk about that in a bit.

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NIKKI - Well, we鈥檒l talk about that鈥� And we鈥檙e also joined by Phil Friend. Seventy-five. What is in the water, Phil Friend?

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PHIL - I have no idea. But whatever it is it鈥檚 working. I鈥檓 still here.

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NIKKI - It鈥檚 working. Now, Phil, you were involved in the fight for disability rights in the early 鈥�90s and you still work to improve disability rights today. I feel very much how I felt when I first spoke to Jane Campbell, talking to you. I feel nervous, I feel in awe, I feel a little bit fan girly.

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PHIL - Well, that鈥檚 all very lovely. [laughs]

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NIKKI - It鈥檚 true.

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PHIL - I鈥檓 in awe of Jane Campbell when I鈥檓 with her too, still, after all these years. Jane Campbell who used to be very engaged in the Independent Living Movement and is now Baroness Jane Campbell. She鈥檚 been campaigning for years and years.

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NIKKI - She鈥檚 in my phone as 鈥榯he baroness鈥�.

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PHIL - Yeah, but that鈥檚 very sweet of you. I mean, I鈥檝e been around a while, and certainly I remember the campaigns to bring the Act in. And of course, as Mik鈥檚 alluded to, it wasn鈥檛 the Act that disabled people wanted really, but it鈥檚 the one we ended up with. So, yeah.

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NIKKI - Well, it鈥檚 really lovely to chat to you, Phil, today. Okay, well let鈥檚 start with you, Holly. When were you first aware of the DDA鈥檚 existence?

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HOLLY - It鈥檚 really interesting, because I don鈥檛 actually know. I was, I guess, one years old when it passed, and so I grew up just sort of knowing about it. And I remember my parents mentioning it when we were dealing with stuff in school and just access to various different things. And it was something I suppose I had in the back of my mind that it existed and that it was there, and I had no concept, certainly as a child, that it was a very recent thing. 听

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NIKKI - Do you know what? Similar. I鈥檓 a lot older than you, Holly, but I think I was 15, I was probably partying hard at an under 16 club called Turpin鈥檚 in Uxbridge, which thankfully and randomly did have a lift and banging access. Mik, what were you doing in 1995 and how aware where you of the DDA?

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MIK - Well, I had a kind of really weird life at that point, because obviously I was still doing kids TV and television presenting. I also ran nightclubs and was playing in rock bands, and then I was also campaigning. So I used to regularly, because I was a celebrity, as you know, Nikki, you get invited to very strange events, and I used to regularly get invited to events with, like, government ministers and I always sort of saw it as this opportunity to try and explain that not only did we want equality because of a kind of moral thing, but there was also this business argument that we now call the purple pound. And so on many occasions I sat with my leather gear and my spikey hair next to some besuited Tory chaps, trying to sell them on this concept, because of course we know about the campaigning and the chaining people to things and throwing paint around and all that, but lots of people in power don鈥檛 really listen to that kind of thing.

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So it鈥檚 really important that there were a lot of voices as well trying to say there鈥檚 more to this than just the moral fight, there鈥檚 actually a reason financially for business wanting to do that. Because the main barrier we faced was business, going no, it鈥檚 going to be too expensive, we can鈥檛 do it, we can鈥檛 do it. And in a way, like Phil said, that鈥檚 why we didn鈥檛 get the law we want, we got the law that business would allow through. I mean, obviously I was clubbing at a professional level by this time, and I found that lots of clubs, even the ones that weren鈥檛 originally accessible were much more likely to let you in.

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NIKKI - Do you think in a way, Mik, that was because you had the ability to kind of make do in a way? You were probably鈥� I can imagine you sort of lugging yourself up a flight of stairs, you know, making do just to party hard because you鈥檙e that type of person.

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MIK - I won鈥檛 deny, there was an awful lot of crawling through various horrible bodily fluids as well, but I think also a lot of the clubs I went to were accessible. A lot of them weren鈥檛, I won鈥檛 deny. And I think that instead of the ones that weren鈥檛 getting better the ones that were took out their access. I remember one nightclub that had a lift in a toilet removing their toilet because they were concerned it wasn鈥檛 up to code.

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NIKKI - What!

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MIK - The thing is, it鈥檚 really hard to remember, it鈥檚 25 years ago, the confusion was unbelievable. No one had a clear idea what it meant. No one had any real guidance. I mean, very much like today really, and it was kind of like, ah what鈥檚 going on? I don鈥檛 know, I don鈥檛 want to break the law, so let鈥檚 just not do anything and then that way we鈥檒l be all right. So it kind of was the opposite of what we were hoping for.听

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NIKKI - Yeah. Now, Phil, I鈥檓 learning even more about this now because we鈥檙e going to be making a lot of films on the DDA and the anniversary for 鲍鱼tv News, and honestly, I鈥檓 watching this old footage of Babs鈥� I keep calling her Babs. Every time I speak, I鈥檓 like, sorry, Barbara. Barbara. It鈥檚 like I know you. But I mean, all the footage that I鈥檓 watching, it got me really excited and I鈥檝e been explaining to a lot of colleagues who aren鈥檛 familiar with disability, I鈥檓 like, 鈥淣ow listen, guys, before 1995 there was nothing. We could go to a karaoke bar, get chucked out and there was absolutely zippedy-do that we could do about it. Like there鈥檚 nothing.鈥� Obviously there were protests in the streets weren鈥檛 there? There were t-shirts, there were banners. Barbara showed me one that made me absolutely die. I think it was DAN鈥檚 poster: To boldly go where all others have gone before, which is just brilliant. But were you one of those that handcuffed yourself to a bus, Phil?

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PHIL - No. Sadly no, I鈥檓 not that dramatic. I was already old by then, so I decided the route for me was much more鈥� I mean, let鈥檚 be clear about something here. Without the Barbaras and the Janes and the Mike Olivers and people of that ilk nobody would have listened to anything that was going on. I was one of the people in a sense who was not quite so visible having all sorts of conversations with employers and legislators, trying to figure out how the Act would get written, and that kind of thing. So my inputs were much more on that level, but I鈥檝e never been under any doubt at all that without other physical campaigns this Act would never have happened.

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So, you know, it鈥檚 like any protest movement, you鈥檝e got to have people in the vanguard who were making a big fuss. Disability Action Network, DAN as it became known, they were frontline, they were full on, they didn鈥檛 give a damn about very much. They would lie under buses, they鈥檇 climb up steps covered in red paint, they鈥檇 do all sorts of things to attract attention. And it was all civil disobedience. And it did create an energy in the media. And I think one of the great surprises for the British public, when you saw the public walking by these demonstrations they鈥檇 say, 鈥淏ut what do you mean you haven鈥檛 got any rights?鈥� The British public assumed we were all being looked after properly because of the charity and all that stuff. You know, we had telethons and things. So yeah, it was an interesting time to be around, that鈥檚 for sure.

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NIKKI - Yeah.

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PHIL - And it鈥檚 important also just to remember, there was no internet, there was no social media. None of that existed, so it was all done word of mouth via good old snail mail and stuff like that. And just to give you an example of what it was like before, I applied to Manchester University in the 1970s to do a degree in social work, because that鈥檚 what I ended up doing, and I got through all the entrance exams and stuff and then I get this very sweet letter from Manchester University saying that although I was qualified to attend the course they were worried that I wouldn鈥檛 be able to live on my own in Manchester so they were turning me down.

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NIKKI - No!

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PHIL - That was just the kind of example. And the Civil Service鈥�

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MIK - I had exactly the same experience when I tried to apply ten years later.

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PHIL - The Civil Service rejected me for permanent pension because I was disabled. The only ray of sunshine was the Alf Morris鈥� and Jack Ashleys and the sort of chronically sick, the wonderfully titled Chronically Sick and Disabled Persons Act, which was the fore runner to the 鈥�95 Act, but it didn鈥檛 give any rights as such, it was lots of, you know, where it is possible tos, but no rights. Jack Ashley and Alf Morris were two Labour parliamentarians who were responsible for bringing the Chronically Sick and Disabled Persons Act into being, and also campaigned vigorously for disability rights under the 鈥�95 Act.

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NIKKI - Was there any one event, and probably I鈥檒l have to direct this question to Phil and Mik, just on age grounds, Holly-chops, but I鈥檒l be back with you鈥� Was there any one event that really, kind of did it, that sparked the whole kind of movement at all? Because, I mean, I was reading a lot about the telethon that ITV did. Was that one of the very first protests?

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PHIL - It was. The protests were about the鈥� I won鈥檛 use the exact language, but one of them was about we don鈥檛 want charity and I鈥檒l leave it at that. There were far more dramatic ways of putting it. So Telethon embodied that and there were direct campaigns, and in actual fact I fell foul of the movement myself because I did some work with the producers of Telethon and it was felt that I鈥檇 kind of in a sense crossed the picket line. I regret doing that now, and I鈥檒l say that publicly. Telethon was covered certainly, and there were demonstrations on air at the event itself, so it was very disrupted.

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NIKKI - Yeah.

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MIK - It鈥檚 funny you see because I actually presented a Telethon in 鈥�92 because I had no contact with the political disability world at all up until then, I was gigging and playing in bands and I was a TV presenter, and like Phil, I turned up at a big meeting where everyone that was going to be involved with the event, and Michael Aspel stood up and said, 鈥淟et鈥檚 face it, no one wants to be disabled,鈥� and I shouted the Anglo Saxon for testicles at him. And it caused a great big furore and I explained that I was very happy and proud to be disabled. And actually what was quite ironic was the 鈥�92 Telethon which was the last one because let鈥檚 face it, it had reached its鈥� it was awful, was less awful than all the other ones because people like myself and Phil had tried to make them understand. But it meant that I met all of the political people because they all spent so much time attacking me in public. [laughs]

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And I met Vicky Waddington. Vicky Waddington was a leader of the disability rights movement, passionate campaigner, and she trapped me in a lift and said, 鈥淵ou want to know why we all hate you don鈥檛 you?鈥� And I was like, 鈥淵es.鈥� And so she explained the social model to me. And I went in this lift this unaware person that really thought I was broken and that I was disabled by my body and kind of the more I tried not to be disabled the better I was. And that was conforming to what obviously we now know is called the medical model that says we are disabled by our bodies and that we have disabilities and they鈥檙e the things that make us less not disabled, i.e. able bodied. The social model, the revelation coming out like an epiphany, was saying no, you鈥檙e not broken, you鈥檙e just different and that you do things differently and that that鈥檚 fine, the reason that you鈥檙e dis-abled is because society isn鈥檛 built for you and you can make it better. You can get an equality law, you can make buildings more accessible, you can change the world.

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And so I went in this lift ridden with guilt and self-loathing, trying desperately not to look like, you know, I鈥檓 not disabled, what are you talking about, and I came out so proud of who I was and I came out and realised that all these other people were part of my community and I was one of them and they were one of me. And even if we didn鈥檛 share the same impairment or illness or condition we shared that experience of being made less able to do something because the world around us wouldn鈥檛 let us excel or fulfil our lives. And honest to God, from that day who I was changed, what I do changed and everything.

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And I think that that鈥檚 the thing I think that lots of younger people, like Holly, have grown up with, because that thinking was so new to so many of us, you know, the political gang knew about it, they鈥檇 met Mike Oliver, they knew all that, but most disabled people in this country had no idea why Telethon was bad, they just didn鈥檛 like it. And I think that鈥檚 the thing that鈥檚听 changed so much in the last 25 years, is so many more people are aware that there is more to being disabled than just not being able to do something like everybody else.

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NIKKI - Yeah, and that鈥檚 beautifully explained, Mik, actually because it is seemingly very simple for people who understand it, but yet sometimes even when I try and explain it to other people I still feel even now in 2020 it鈥檚 not grasped immediately. It鈥檚 probably the way I鈥檓 explaining it. Holly, as a younger person how do you feel hearing the events that Phil and Mik have described leading up to the DDA? Do you think similar could happen now, obviously COVID restrictions aside of course? Are we going to see protests again?

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HOLLY - I think it鈥檚 so interesting. I mean, for me it鈥檚 so important to hear that because whilst I grew up knowing I had rights I was never really connected with any of the people who got me those rights. And I didn鈥檛 know until, I suppose I was a teenager and young adult, about the social model. I mean, I just had a vague idea that it wasn鈥檛 all that bad to be blind. My parents had always raised me to be kind of like, oh well, no point in worrying about it, so it was very much like I was raised with a positive viewpoint on my blindness, but I didn鈥檛 know the social model until later. So it鈥檚 actually really important I think for us to hear this.

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And as to whether we could have more protests, from what I see there is a struggle between online activism and offline. And I think online activism is very important and necessary, and what it does is it makes activism accessible to people who maybe can鈥檛 do a lot of the stuff offline. You know, people with chronic illnesses who for various reasons may not be able to leave their houses. But what I think can happen is sometimes we can get caught in a bit of an echo chamber, and I know I do this myself where I鈥檒l be so frustrated about an access issue and I鈥檒l talk about it and talk about it online and people are like, 鈥淥h yes, this is terrible, this is terrible,鈥� and you feel like you鈥檙e connecting with people. And in some ways you are, but then in other ways it鈥檚 almost like, well nothing changes because all I鈥檝e done is talk to other people who think it鈥檚 bad as well.

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NIKKI - No, I hear you, I hear you. Do you think, Holly, though that having disability discrimination legislation in place, do you think it鈥檚 put you in a better position in your life than those that grew up without it?

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HOLLY - I think it鈥檚 absolutely put me in a better position; I don鈥檛 think it鈥檚 fixed everything. So I think that knowing I have rights is very, very important for how you grow up and your sense of self. So just that knowledge has helped me. And I don鈥檛 think we can underestimate that. As for the strength of the law itself, well the others have said it鈥檚 not the law disabled people hoped for, and I can really understand that, because what I find as someone who鈥檚 now an adult having to deal with this stuff by myself is that the hardest thing is actually challenging anything and using what is now the Equality Act to challenge discrimination. I mean, it鈥檚 so difficult. It鈥檚 complicated. It鈥檚 not a particularly robust law, there鈥檚 lots of interesting ways of getting around it. And just the money and the resources it takes, and even though you can get Legal Aid, for example, just getting that is a process. And I mean, I recently discovered that the Legal Aid form isn鈥檛 fully accessible, so there鈥檚 an irony. [laughter]

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PHIL - Oh, why am I not surprised?

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HOLLY - I know.

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PHIL - I鈥檓 not surprised by Holly鈥檚 comment at all. I just want to add in something that Holly鈥檚 triggering in me, and that was that not only was there campaigning around the law and the changes and so on, there was also a massive change in the way we thought about ourselves, and therefore the language we used about ourselves. So you have to remember that when Mik was doing the Telethons it was physically handicapped people. Poor invalids. We drove invalid carriages. All that kind of stuff. Younger people now talk about themselves in a very different way. Even if they don鈥檛 know about the social model they are still positioning themselves as viable human beings who happen to have some kind of impairment.

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We all grew up in special schools, spent long periods in hospitals. The movement in some ways was formed because of that. Holly鈥檚 challenges now are much more tricky. Many, many disabled people, thank goodness, are now growing up and going to ordinary schools and doing all those things. So it鈥檚 much tougher now to unite and campaign perhaps, even with all the social media, than it used to be when we kind of all marched or whatever.

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MIK - It鈥檚 funny really, Phil, because I think the exact opposite. I was totally outside. I went to a mainstream school, I was disabled since birth, and the whole political thing was a clique that you could not get into. And it was impossible. So actually now Holly and her generation, they all talk to each other. You know, I鈥檝e learnt so much online from talking to people with different impairments and finding out what they want so that when I鈥檓 doing my work I can be a conduit for them, and I can get them involved. That I don鈥檛 think existed then and I think what we need to do as older people is support the younger people and give them the skills that we鈥檝e got and the way in.

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Because lots of us, when we got the law, we all went off and developed very nice consultancies and jobs and things that were about implementing what we鈥檇 got. I really think it鈥檚 time to get all the young people involved in that, to get them onboard, to educate them and to bring them up and to give them that pride that we really felt and that we do feel. You know, ten years ago I was offered the chance to walk again and I turned it down because I am happy in a wheelchair and no one could get it.

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NIKKI - Mind. Blown.

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MIK - That鈥檚 the thing that the social model and the law gave us, is that there is a whole generation that are growing up, like Holly, who said, 鈥淲ell I was raised to just think there鈥檚 no big deal about it.鈥� I don鈥檛 think any of our generation had that.

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PHIL - Part of our challenge back in the 鈥�80s and 鈥�90s was getting non disabled people to listen to us. Nowadays I think it鈥檚 the same challenge. How does Holly鈥檚 generation get non disabled people to listen to them?

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HOLLY - Yeah, I think there鈥檚 truth in that. I mean, I think both of you are right in different ways. So I think there is truth that when you go to specialist schools and things like that there鈥檚 obviously more of a connection with other disabled people because you spend every day with them. So I did go to a blind school for a certain amount of time. I was mostly mainstream educated, but I went to disability summer camps during the summer holidays and that really formed a crucial part of my identity because it got me out of the blind community as well. And the blind community can be quite insular. We like to spend a lot of time with each other.

听

And I think there鈥檚 something good in that, like there are good things about that, but also sometimes we miss the wider disability rights movement because we鈥檙e so busy just hanging out with other blind people all the time. So going to wider disability summer camps, and I鈥檓 really grateful to my parents for that, because my parents basically said, 鈥淲ell just go to this, you don鈥檛 have to go to a blind thing, we鈥檒l just send you to this instead.鈥� And that was so cool for me because I met wheelchair users, I met people with learning disabilities, like all across the disability spectrum.

听

And it changed my outlook on myself and it also taught me about working with other disabled people and where a wheelchair user might guide me, I might hold onto the back of their chair so they could guide me, I might reach something for them that they couldn鈥檛 actually get to. So it taught me a lot about working collectively, and that was really important to learn that young. But then I think there鈥檚 truth in what Mik says, that we do connect online as well. I think the danger with connecting鈥� Well, the danger with connecting online is not the right phrase I think. Connecting online is so powerful but we鈥檝e also got to learn how to take that offline.

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So there鈥檚 two sides to it, you know, I think that connecting online transformed my life and it connected me with adults who were fighting for disability rights and that was incredible, but there鈥檚 also difficulty in that because we鈥檙e not doing so much offline activism, or perhaps we are, but a lot of us don鈥檛 find it. So we鈥檝e got to learn how to take that offline and get that out to people, like you say, actually reach non disabled people.

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NIKKI - Yeah. One of the things you鈥檝e all touched on during this fascinating chat really is how you see yourself as disabled people. You鈥檝e all mentioned it in some way or the other, and I鈥檓 just wondering, now we鈥檝e got this unavoidable narrative that is the Coronavirus, this hideous virus, and we鈥檙e hearing a lot more use of the word vulnerable, are any of you concerned about how we鈥檙e viewing disability at the moment, thinking in terms of Coronavirus?

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PHIL - You鈥檙e absolutely right, Nikki. Vulnerable is a word to be avoided at all costs because it sets you up to be, you know, you need protection and so on. I鈥檓 reminded of a six foot ten rugby player who said to me, 鈥淚f you come in with a double barrelled shotgun and point it at me I鈥檓 feeling pretty vulnerable.鈥� [laughter] I think one of our colleagues, Simon Minty, uses the term susceptible.

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MIK - Yeah.

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PHIL - And that鈥檚 true, I think we are susceptible.

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NIKKI - Yeah.

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PHIL - I have other conditions and I have to be careful, but I鈥檓 not vulnerable and I don鈥檛 want people to think I鈥檓 vulnerable, but there are issues around this virus which clearly disabled people, perhaps more than some other groups, need to be careful about. But yeah, vulnerable鈥檚 a word to be struck off.

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MIK - There鈥檚 a horrible element as well that vulnerable has come to also mean that we can鈥檛 guarantee that we鈥檙e going to get the same treatment. Because people are so sure that our lives are not worth living and there鈥檚 quality of life and all this stuff, we鈥檝e seen huge things being rushed out across the country to increase cycling and walking, and yet nearly none of them have thought about access at all. Where I live between the low traffic neighbourhoods and the cycle lanes, all of which seem to have just been whacked out without any thought at all, my world has shrunk. Do you know what I mean? And I think that鈥檚 happening all over the place. So not only can we not go out because we鈥檙e susceptible, but when we do go out again I think we鈥檙e going to find a very different place, a very different country, and I think that might be the trigger.

听

You know you were talking about the trigger before, I think there鈥檚 going to be a big trigger when we come back. We鈥檝e locked ourselves away for a long time and it鈥檚 not fair. Society now knows what it鈥檚 like. The social model has been applied to the whole country now. They鈥檙e all disabled by a virus and the need to avoid it. So it鈥檚 time for everyone to jump onboard, and I think disabled people will get quite active when we鈥檙e finally allowed out again, because we as a community have had the most deaths as well. So it鈥檚 really important that we don鈥檛 let this just go, and all that suffering go wasted.

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NIKKI - Yeah.

听

PHIL - I think the other thing just to quickly add is that I am older than my colleagues and I think one of the things that is not being talked about enough is the disability in the movement sense has never really been addressed in terms of age. We talk about older people, we talk about old people, but we don鈥檛 talk about disabled older people. And the numbers of deaths in care homes and that kind of thing has been just scandalous. As a movement, if we are a disability movement, we need to be focusing attention on how we protect the rights of that group, you know, the lack of visiting and the mental health issues that they suffer. I mean, it鈥檚 just extraordinary. There is an age construct here and I think younger disabled people, perhaps like Holly, have a different set of circumstances to somebody like me. My own kids, you know, who are in their 30s and 40s now, they鈥檙e not able to lead the lives they want to lead because they may infect me. You know, so it鈥檚 very, very strange.

听

NIKKI - Yeah. Holly, how do you feel about it? I mean, would you go as far to say that the Coronavirus has had an entirely negative impact on disability and the movement now that we鈥檙e 25 years on, or do you have a more positive take on it?

听

HOLLY - I think COVID is really complicated. I鈥檓 young, I鈥檓 reasonably healthy. My blindness doesn鈥檛 affect me in terms of making me more susceptible to a virus. What I鈥檝e really seen though is the blind community really falling apart, and that really struck me at the beginning of COVID, was just how a community which I identify so strongly about was just struggling so much. And the reason for that was, and we can go back to the social model, it was not set up for us. So there are many, many blind people who, because our rehabilitation system is such a disaster, they aren鈥檛 able to actually go out without assistance. And the charity model has always kind of plugged this, you know, just put the plug in and said, oh we鈥檒l fill that gap, we鈥檒l give you a sighted volunteer who will take you out. Well, that doesn鈥檛 work during COVID does it? So it鈥檚 that whole charity model that has been peddled by blindness charities has completely fallen apart, and instead of actually putting their hands up and saying, well perhaps we should invest in better systems and not just give you charity, they鈥檙e just trying to give us more, which is not the right answer I don鈥檛 think.

听

But I think it does show how, whilst the virus itself may not be what is affecting a community, just the social changes and the effect of social distancing is, and that鈥檚 certainly what I鈥檝e seen from a lot of the blind community, is that so many people are basically, effectively made dependent on other people because of the charity model. And it鈥檚 fine if you need other people to assist you, you know, we have personal assistants for a reason. I fundamentally believe in that system, when you have the support to employ that person through your local council and through direct payments, but so often it鈥檚 put in place by blindness charities who would rather do that than actually give blind people empowerment and skills. Because I think, I mean, what would happen if we all had those skills and could rise up? The charities wouldn鈥檛 survive would they?

听

NIKKI - Obviously charities that represent people with sight loss aren鈥檛 here to comment. Throughout the pandemic, no matter who I鈥檝e been speaking to, no matter what disability, they鈥檝e all said something or other similar, that their world has shrunk for whatever reason. And I mean, online shopping was a huge thing wasn鈥檛 it in the beginning for people with sight loss? I mean, it was just an absolute鈥�

听

HOLLY - Oh, it is already again because of the bloody second lockdown. Sorry, I鈥檓 trying to get a Tesco delivery slot and I can鈥檛. [laughs]

听

NIKKI - I can hear your frustration, Holly. I can hear your frustration.

听

HOLLY - Yeah.

听

PHIL - I think it鈥檚 time we got Disability Action Network to start picketing your local Tesco鈥檚. That鈥檚 what you need. You need direct action, Holly. Stop all this social media rubbish. [laughs]

听

NIKKI - Holly, I was going to ask you as well while we鈥檝e been chatting. Have you ever had to use a DDA or Equality Act to hold somebody accountable?

听

HOLLY - Yes. So when I had a guide dog, absolutely, because as most people know assistance dog owners definitely face their fair share of access denials. I did take a case out using the Equality Act, and at the moment I鈥檓 dealing with Student Finance who make their whole application accessible except the part for Disabled Students Allowance. That鈥檚 the only bit that isn鈥檛 screen reader accessible.

听

NIKKI - Wow! Really?

听

PHIL - I haven鈥檛 done a direct campaign, but as you know I chaired Disability Rights UK for a time and RADAR before that, and certainly we were involved in all sorts of campaigns to try and bring the Act. I think what we haven鈥檛 mentioned was that when the Act was passed and not long after it we had the Disability Rights Commission, and the Disability Rights Commission certainly did an awful lot to kind of bring cases to the attention. And then it got merged in with the Equality and Human Rights Commission, which in some people鈥檚 eyes made it a weaker disability kind of voice. But yeah, I mean Holly鈥檚 story is just legendary isn鈥檛 it?

听

MIK - What鈥檚 really tricky about the law is that lots of people who actually have a greater duty, there鈥檚 a thing called Public Sector Equality Duty which is an element of the Equality Act that places鈥� public sector have a greater requirement to show that they are not discriminating against people, and lots and lots of our country still don鈥檛 know they鈥檙e covered by it. And one of the things I specialise in, and I spend an awful lot of my life at the moment being contacted by people that suddenly go, 鈥淎h, we鈥檝e got this legal requirement that we didn鈥檛 know for ten years,鈥� and I think that it鈥檚 really important that when this is all over the government really needs to focus on who is covered by the Equality Act 鈥� everybody 鈥� and who is covered by the Public Sector Equality Duty, which is all public bodies and anyone who serves the public. So that鈥檚 why things like this happen because bodies don鈥檛 realise that they not only have to be equal under the Equality Act, but have a greater duty to provide an equal service for all.

听

NIKKI - At the time do you think the DDA was very tailored for people with physical disabilities, not invisible, and what about BAME disabled people? I鈥檓 just thinking outside of the physical disability box which I鈥檓 thinking of, because I am myself, but BAME鈥�

听

PHIL - Yeah. I mean, if we go back a stage I think at the time of all the campaigning that was going on, direct action and so on, it was a very white male thing. I mean, Jane Campbell and others of her stripe were also bringing to the attention of people like me the fact that there were women in this thing who were not getting their rights met either. And then of course there were the lesbian and gay groups that formed as well, that in a sense were saying look, it isn鈥檛 just about white men in wheelchairs, it鈥檚 about a whole lot of other things.

听

So I don鈥檛 think, if I鈥檓 being really honest, that people with mental health issues and black and minority ethnic people have been served very well by the movement actually to some degree as well as the law. So the representation, it鈥檚 extraordinarily difficult to promote the voices from those groups for some reason, which I don鈥檛 understand. So the needs and wants of smaller communities which are based in some of our major cities, for example, they鈥檙e ploughing a very lonely furlough it feels at times to me. And I鈥檝e certainly made it my business to do whatever I can.

听

I always remember when I was giving talks myself and going to lots of public meetings, Liz Sace which was then the Chief Executive at Disability Rights UK used to say to me, 鈥淲ould you please start by talking about the rights of people with mental health conditions because that will focus the audience鈥檚 mind on a different group from the one you represent.鈥� And I鈥檝e always remembered that. It鈥檚 a really important thing that we as a group, people with fluctuating conditions for example, that some days are good and some days aren鈥檛 so good, what about their rights? How do we look after their needs? It鈥檚 very complex this, but you鈥檙e right to raise that as an issue because I think we don鈥檛 necessarily hear enough from groups amongst the disability groups, if you see what I mean.

听

NIKKI - And that鈥檚 still the case you feel, Phil?

听

PHIL - Yes, I do. Yes, I do. It鈥檚 got better because of social media but it鈥檚 still the case.

听

MIK - It鈥檚 funny, because I spent a lot of my time in the survivors community of course which is the mental health community who have come out of institutions, and I always really got on with that group, I thought they were brilliant at campaigning, they used creative methods to get their voice across, but it was just that you couldn鈥檛 get it heard. And I think there鈥檚 a real public perception, it鈥檚 easy to see wheelchair, guide dog, you know, or sign language, but as soon as you start saying it鈥檚 hidden and that one in four of us can experience a mental health crisis every year you start getting that fear again. And I think we鈥檙e back there where people are really afraid of being disabled without understanding the wonder of it, because we never see that. So many stories around disability are around us fighting this and campaigning for that and struggling with this, you know, and Coronavirus is a perfect example. And it鈥檚 time that the story changed as well, so that we can be happy and positive and creative. That was one of the things about the whole equal rights movement, it was all artists so they all had these wonderfully creative lives, and we need that back.

听

PHIL - We also need to remember that we鈥檙e talking about class here too. We talk about intersectionality, you know, the idea of men and women, black and white and so on and so forth, but you鈥檝e also got the issue of class and poverty. And I think disabled people, as we know from the data, are likely to be in the poorest amongst our communities and their voice is even less heard. So it鈥檚 not just about access to buildings, it鈥檚 about an access to an income which makes you independent and that kind of thing.

听

NIKKI - Yeah. And let鈥檚 not forget about disabled people in scooters who are also dyslexic, that might happen to work on 鲍鱼tv News.

听

PHIL - Absolutely. They鈥檙e very high on my list.

听

NIKKI - Yeah, and they can鈥檛 read an autocue to save their life. [laughter]

听

MIK - It鈥檚 funny how people don鈥檛 think that we are more than one thing isn鈥檛 it? I mean, I鈥檓 dyslexic as well and it鈥檚 really funny, that whole concept of, what do you mean, you can鈥檛 walk or read? And it鈥檚 like, oh and there鈥檚 more, there鈥檚 more folks. [laughs]

听

NIKKI - Right, well we鈥檙e going to round it off now, so what I鈥檇 be really interested in is to ask each of you individually. I鈥檓 going to start with Holly, and I鈥檓 going to ask you the same question really, and that is how does current legislation need to change to make your life better?

听

HOLLY - That is such a difficult question. I think broadly it needs to be enforceable, and it needs to be easily accessible. And by that I mean it doesn鈥檛 require huge amounts of money from the individual to enforce it, it doesn鈥檛 require an incredible understanding of the law. Because I will read legal documents but it鈥檚 still complicated knowing exactly what to say. So I think it has to be enforceable. I mean, I think there needs to be changes to the law itself, but broadly speaking, if we could at least enforce what we have that would make a difference

听

NIKKI - Yeah. And what about you, Phil?

听

PHIL - I鈥檓 in Holly鈥檚 team. I really think it鈥檚 about enforcement. I think the chances over the next ten years of getting anything done to the Act itself are pretty remote really. There are bigger fish, it would appear, to fry. So I would support Holly鈥檚 argument that we need to enforce what鈥檚 there, we need to make the rights of disabled people much clearer to them. We need to see more resource going into organisations that are fighting on their behalf. So for me it would be about enforcement, yes.

听

NIKKI - Enforcement, and access to the whole system. And Mik, what do you think?

听

MIK - I agree, it has to be enforcement. I think there should be say a five or a ten year period where we say right, it鈥檚 going to change soon so you have this much time to do what you have to do and then it becomes an act against the state and not the person. So immediately it鈥檚 something you can ring the police and go, 鈥淭his person has discriminated against me.鈥� It sounds silly but I think that鈥檚 the only way it鈥檚 going to happen because however much we create funds to fund private prosecutions, however much we do all that stuff, it鈥檚 still down to the person to say I have to fight for this, and it鈥檚 not on.

听

Too many people just cannot do that, they don鈥檛 have the strength, the ability, even if we gave them all the money in the world. And it has to be a law that says this is an illegal act, you have done it, we鈥檝e given you ten years. You鈥檝e had 25, have another ten, but at the end of that that鈥檚 it, no more time, no more excuses, do it or you go to court. And you鈥檙e breaking the law against the Queen, not against disabled person B. And that鈥檚 the only way I think we鈥檒l get it done.

听

NIKKI - Whoo! Has this conversation fired you all up enough to start handcuffing yourselves to things?

听

HOLLY - Yeah, I think it would be quite exciting if we did some protests because I obviously wasn鈥檛 able to participate in the last lot, I was only one years old so that wasn鈥檛 going to happen, but I wouldn鈥檛 mind. I鈥檇 definitely do that.

听

PHIL - I鈥檇 be very happy to do it in the summer.

听

HOLLY - Yeah! [laughter]

听

NIKKI - Yeah, I鈥檓 the same, Phil. I鈥檓 totally a fair weather protestor. I鈥檓 with you 100%.

听

PHIL - I鈥檓 a summer campaigner, and I鈥檒l chain myself to Holly or anybody else who happens to be free.

听

NIKKI - All right, Phil, what about me, love?

听

HOLLY - Right, we鈥檒l all go and chain ourselves.

听

PHIL - Yeah, well you鈥檙e a scooter user.

听

MIK - And I can bring the handcuffs if you want, but鈥�

听

NIKKI - All right, Mik. All right. We know.

听

MIK - Sorry, I鈥檓 playing to stereotype there.

听

NIKKI - Ah listen, well thank you, Mik, thank you Holly and Phil for joining me on my very first ever Ouch podcast. Do you think she鈥檒l ever get asked to do one again? Who knows? Thank you all for listening. Now, do keep an eye out for loads more disability related TV, radio, articles, from around the 鲍鱼tv over the coming months, there is a lot to look out for, and some really great stuff, all to mark the 25th anniversary of the Disability Discrimination Act. Please subscribe to the Ouch podcast on 鲍鱼tv Sounds and there you鈥檒l also find hundreds more disability conversations. You can also get in touch by emailing ouch@bbc.co.uk, and find us on Twitter and Facebook @bbcouch. You can also follow me because I鈥檝e got an appalling number of followers. Now thank you for listening and goodbye.