OH600 Interview with Mark Williams (History of Place)
The transcript dictates the speech from the interpreter and the interviewer, the interviewee can be heard on the audio.
MJ: Right, this is the Accentuate Oral History Project. My name is Martha, I’ve been interviewing; can you say your name for me?
Interpreter (IP): Mark Williams
MJ: And your place of birth and when you were born.
IP: I was born on the first of June, 1965 in Bristol.
MJ: And the date is the fourth of April, 2018.
IP: Is it okay?
MJ: Okay, brilliant… So, Mark, can you tell me anything about your childhood?
IP: How long do you have? [Laughter] Ah, well, [laughter], he can’t even remember his date of birth! I was born in 1965, and I was breech birth. So, in the… first three years of my- of your life, Mark? Yeah, yeah… [I] spent a lot of time in hospital doing physio, and my mum was told to, ah, put me away somewhere and forget about me. So walk away, basically, yeah.
I then went to Claremont School in Henleaze, which was a special school. So, I was just over three years… and three months of age? So, I was picked up by a taxi at quarter past eight, and didn’t get home then ‘till gone five… Just over three years of age, weren’t you? I never communicated at all. And so it was… very… traumatic? Stressful for me and my mum, yeah. So, most of the time at school I spent was just doing physio, and if I managed to put one sock on, which took me about four hours, they put a gold- was it a gold star? - on the wall. And they tried to make… me walk, and all the teachers thought… I was quite demanding, because I… well, you were frustrated, I expect, weren’t you? What there? Oh, you’re not demanding now, no. No you’re not, Mark. [Laughter]
I had one physiotherapist who made me very ill, and very depressed. So, my mum knew what I was capable of, but the head teacher said to my mum that ‘you will be very disappointed.’ So I then went to another classroom when I was… thirteen? So you spent ten years doing nothing, basically, Mark. And Mum asked if I could do some homework, And in a textbook, I had ten questions… The questions included, ‘How many eyes do you have? How many ears do you have?’ And I was… 13, so [it was] very demoralising.
So, my mum wanted me to obviously try and get me out of there, and then I went to another specialist school; so, that was South Bristol school. And… But they’d never had anyone with my impairment before. I remember two things: So… first thing was with… the Deputy Head would not teach me- he was an English teacher, weren’t he, Mark? - so I had to have my English lesson with a remedial teacher every day, and also, my mum had to come over every day to feed me, ‘cause there weren’t anyone there willing to feed me. So… In one way, it shows how things have moved forward, and obviously I’ll come to the barriers later.
So, when I was 15 and a half you had to start thinking about what you were gonna do at sixteen…at school. So, at that time, all disabled children were encouraged to go away to college to make themselves more independent. I never wanted to do that. So, at South Bristol School, that was the only way they'd... oh, so the only way they'd take me on there was to- or, to keep me on, sorry- was to, um, have an educational assessment. However, it was in Devon... at a boarding school. So, I... already had a further education- the department there? - yeah. So, when I went for the assessment... The one day I went there... I was never told so many lies in my life. They said 'everything… there is marvellous.’ You would do... ten? [Mark repeats word a few times] - Oh yeah, the tors... on Dartmoor, yeah? - So, you'd do whatever you wanted. You'd be out every night, [Mark laughs] - ha ha ha, yeah, that's funny, Mark. [Laughter] Anyway, I decided to... try it, and go for two years... But coming home every other weekend. So, every fortnight, in other words, Mark, yeah. I only stayed three weeks. It was hell, yeah. I'd never felt bitter before, but I really did now. So, on the noticeboard, my time to be in my pyjamas was half past seven. [00:10:00] What other 16-year-old wouldn't wanna be in their pyjamas at half past seven? ... It made me very bitter. And very angry. And very patronised, yeah.
So, the second time I went home for the weekend, my mum said, 'you're... not going back'. So, Avon County Council, as it was at that time, was... the education authorities. And ... Mum phoned them up to say that Mark weren't going back, and... they said, 'we'll have to come and see you.’ And about - how many years later? - 38 years later, they still haven't come for a visit yet, so... you're still waiting for them, Mark? To come and talk about your education? [Laughter]…it was a very hard period at that time, yeah. Here, see? [Laughter]
MJ: Okay... so- IP: How are we doing? MJ: Good! Perfectly, yeah, great. ...Your younger years were filled with a lot of frustration, evidently. Did that extend to interacting with other students and peers? IP: At that point, yes. MJ: Okay. Was your mother your... main source of support, then? IP: Yes, yeah. MJ: Right. ...So, when did you get involved in campaigning for the rights of disabled people? IP: So, I just carry on for what happened... When you left school, you mean? ... And that was how you got into it, then, weren't it, yeah? ... So all the local authority at the time would offer me was three days in a day centre, three days a week, and my mum...with help from mum. managed to get me into a mainstream college. Yeah, first of all, it was on a course that [was] for people who had not done well at school... obviously, Mark hadn't done well at school 'cause he hadn't been educated at all. [Laughter] I remember this was 1982? ... Didn't have any personal assistant no PA’s , and disabled people weren't really seen in the community. So, I remember wheeling myself into the canteen... and they all looked at me as if I'd come from Mars. ... So, It took about six months... to recognise my talents, humour, wit, you know, and knowledge, and I stayed there, then, for four years, and managed to get four O Levels and one A Level, Which, the A Level was in Politics. And (unsure of two words [00:14:29]) , was aim then was to end up at number 10, so you'd got political there Mark hadn't you. You’d got into politics. So at that time I met some other disabled people, and ... we decided then to start up what was known as the Avon Coalition of Disabled People. ...There's a picture of me in the M Shed protesting with other disabled people outside the Arnolfini. That was before the coalition started. But it was some of the people who started the Coalition, weren't there? So, the aim, then, of the Coalition was to set up a centre for independent living, as it was called then. And at that time, the Coalition was... quite political. ...We did many campaigns for- was it Children in Need? Or it would have been the other one, weren't it, Mark? Yeah, the telethon, weren't it? - ...There was a telethon, which was the precursor to Children in Need, weren't it? And it was on ITV, weren't it, yeah. And then he got involved with Direct Action Network- DAN is the acronym- and got involved with many campaigns, in Bristol and in London, in the capital... weren't it, Mark? Oh, yeah, and after spending six years at the South Bristol College, where you got your O Levels and A Levels, then moved on to Bristol Polytechnic, where I... did a Social Work course for four years. That was very hard. And that was when my family started funding my own... personal assistant. To write your notes and that, weren't it, Mark? To help you with your course, yeah. ... I was still involved with the Coalition- while you were doing your course, yeah? - and in 1993, I decided to try and move in on my own. So at that time, the... the old ILF (https://www.disabilityrightsuk.org/independent-living-fund ), but that had sort of changed, innit Mark? ... So, you had to have ... -it was about 250 pound a week, was it, Mark? - support from the local authority before you could apply for the Independent Living Fund. So at that time, the local authority had not started direct payments, and they wanted me to have home care. So, I fought very hard... to get direct payments, which was a new thing at the time. I had a file about that thick, [indicates large size with hands] but in the end, the authority gave me direct payments. ... And so I also managed to get the ILF [Independent Living Fund]. So what about the campaign? WECIL Mark? MJ: ... So, what sort of things did you do within the movement when it came to campaigning? IP: ... Anything to do with politics- [00:20:00] well, give an example, Mark? Of what you did in Bristol?-... So, protested at [Bristol] Parkway train station, 'cause it was inaccessible, so you've... handcuffed yourself to trains and busses and that, haven’t you? And did the same in London, 'cause obviously that's where the Parliament was. Did a lot of protesting outside Houses of Parliament, and... my PA at the time got arrested, so I was on my own in London, [laughter] for four hours in the middle of London. So, they didn't arrest you, Mark, hey arrested your PA, didn't they? MJ: Did you feel that your protesting made a difference in terms of accessibility? IP: So... up to 2010, I think the team of people's movement had moved forward a lot... for instance, the Disability Discrimination Act came in in 1995, so that was... pressure from the disabled people's movement on the government at the time. But since 2010, since the... coalition government came in, it's gone down hill, basically, Mark, hasn't it? Yeah. You think it's gone backwards? MJ: How did you feel about having other disabled people around you a lot of the time? IP: I think at school, it didn't... help, 'cause we were all in the same boat, and you were never able to mix with non- disabled people. I think... with the disabled people's movement, it had to be disabled people fighting for their rights, otherwise it wouldn't have worked. MJ: ... So, going back to... sort of, now, present time, what do you think it's like living in Bristol today? IP: ...So, when you look at the exhibition at the M Shed, for instance, you realise you've moved forward, to a point, but obviously realising how much more there is to do; and you realise how fragile... direct payments are with all the cutbacks that are going on. MJ: Mhmm ... What would you like to see done in terms of disability? Other than, you know, payments, and things like that? IP: I think it's about general attitudes. So, if you look at the media, for instance, now, they're... sort of portraying disabled people as scroungers, and ... it seems to be never positive. MJ: Do you think this attitude in society has changed over the years, since you were young? IP: A bit, yeah. Has it gone backwards, like you said, Mark? MJ: Are there any positive experiences you've had around Bristol? IP: I think about... about WECIL [West of England Centre for Inclusive Living] and all that, Mark, 'cause you haven't mentioned it. It was really positive when we set up the West of England Centre for Inclusive Living, this is called now WECIL- because you were a founder member? - I was a founder member of the whole independent living movement in Bristol, 'cause a lot of people forget about that, Mark, yeah? GS: Can you tell us more about when that was set up, and ... what happened at that time? IP: Is it alright if I have a cup of tea first? MJ: Yes. (Break at [00:26:28]) IP: You ready again, Yeah? MJ: Okay. So, can you tell me a bit more about the people you founded the movement with? IP: So, there was about... four of you, yeah? We met every Tuesday night for about a year... in Half Baked restaurant [00:27:04]), which is in town, yeah... we had to decide what we wanted. So we really wanted a centre for independent living from the start, which were around in other parts of the country, weren't they, Mark? But we obviously needed to set up the Coalition first- which was more a campaigning group, weren't it, Mark, yeah? - so we obviously had to fight for our rights... what you really had then was on one side... in theory, you had the Coalition on one side, which was campaigning for people's rights, and on the other side was WECIL [West of England Centre for Inclusive Living], which... was more of a service provider. So, that was the ideal picture... Coalition, the CIL [Centre for Independent Living] both working together; and for a while, it worked. GS: ...Do you mind me just... What year was this, Mark? IP: So, the Coalition started in about 1989... but you're not sure exactly of the date? ... I could find that out for you? GS: We can do it after. IP: Yeah, so, it was '95... WECIL [West of England Centre for Inclusive Living] started in September 1995... for me, it was a real pity when the Coalition ended... 'cause then you had the lack of campaigning. So the campaigning ended. [00:30:01] It was about 2005 when it ended, yeah? So, at that time, everything seemed quite rosy... we obviously had the DDA [Disability Discrimination Act] come in, we had direct payments with WECIL [West of England Centre for Inclusive Living]... We had a lot of support groups around direct payments... self-advocacy, which was very ... forward moving for the movement, yeah. And then 2010 came- is that what you're saying, Mark? Yeah- ... the Coalition ended... about 2007, oh... not sure exactly, it was 'round about that time. That was a lot to do with funding, and in a way the people... who set it up had moved on, and a lot of them... were then working for [Bristol City] Council, so, really, how could you work for the Council in the day, and then campaign against the Council at night? So, it was a bit of a contradiction, wasn't it, Mark? Yeah. How I see it, that was a major problem. So, we had... at least three activists... who ended up working for the Council; so there was a bit of conflict of interest, you mean, Mark, yeah. About the council... were the Coalition workers working for the Council? MJ: Would you say that attitudes outside of the disabled community were positive, then? At the beginning? IP: At that time, yes. So, between 2005 and 2010... things were moving on; I was training as a disability equality trainer... doing a lot of training around person centred planning and all that. So, did it in Ireland, Scotland, Wales, Northern Ireland... going all over the UK, and it really felt like the movement was moving forward. And then Cameron came in, yeah. [Laughter] Say no more, Mark. [Laughter] MJ: So, do you feel that all of the work that has been done has just... slowly gone backwards? IP: We are in a better place than we were in 1981, but we are moving backwards, yeah. So, when I do a talk -for instance, at... you do talks at schools, don't you, Mark, to the children? - and there's always disabled children there, at mainstream school, so that's... In that respect, it's gone forward, yeah. Things have moved forward. ... But in other ways, things are moving forward; for instance, when I had... a review about my payments last year- do you want me to talk about that? Yeah? - So, right from the start, living on my own, I've always had 24-hour support, 'cause I need it. Do you wanna explain how it was before, Mark? When you were on Independent living? It's just giving context, innit? When I was on the ILF [Independent Living Fund], ... when I wanted to go on holiday, I would write a letter to them, to have extra funding so I could take two PA's on holiday -'cause obviously Mark only has funding for one PA- ... that was always no problem. So, they give you the extra funding... to take two people on holiday, would you, yep. However, Bristol City Council won't do that [anymore], they won't fund you. So... you used to have a two year review every two years, didn't you, with the... ILF [Independent Living Fund], and there was never any problems... just go through the process and say you still needed your ILF [Independent Living Fund]. ... When the ILF [Independent Living Fund] closed in 2015, I had a... big review with the Council, which, in the end, was no problem, at the time. Part of the... When it was transferred... [Text alert sounds] Oops, that's Mark's phone, sorry! [Laughter] Is it all right if I just move it? Sorry... No, it's all right, Mark, I'll just make sure. It's only your mum, Mark. [Laughter] Nothing vital! Is that all right? Is it okay if we... I'll try to... I'll answer it, because it'll keep buzzing, that's the... problem with it, it keeps... If you don't open it up... [Picks up phone, opens message] So, when... the ILF [Independent Living Fund] was closing, the Bristol Disability Equality Forum had a conference [00:40:00], and then they fought hard to make sure that, obviously, we... still got our direct payments; people who used to be on the ILF [Independent Living Fund]. And they have a panel... A local authority has of what they call a 'panel discussion', and... Mark's direct payments were... approved. But last year, when I went on holiday, I obviously had to negotiate paying the two PA's... and with the living wage and that, weren't you... Mark was concerned that he obviously weren't paying them [the] correct amount of money. So when I came back, I phoned WECIL [West of England Centre for Inclusive Living] for advice [00:41:00], and the next thing I knew, I ended up with another review from the Council. And that was hell. I ended up having to write a diary for [a] fortnight; so, everything I do in my life. They suggested that I spend perhaps half an hour- a quarter of an hour to start with, weren't it, Mark? Then going up to half an hour- spending time on my own to make me more independent. [Mark laughs] a suggestion from the social worker, weren't it, Mark? [Continued laughter] Well, you can tell what Mark's reaction to that is! So, obviously, I was very concerned about being left... You were worried, then, that... they'd decide to leave you on your own at night, didn't they, Mark? And obviously, that risk of fire, and everything... obviously, Mum was very concerned about that... When Mark had his first review... Mark's mum was saying, you know, 'What about the risk of fire if he was left on his own?' And the social worker said, 'Well, that doesn't happen very often. It's not like it'd happen...' you know. Only needs to happen once... [Laughter] 00:42:45] But the second review, weren't it, Mark, you had problems convincing them that you still needed his 24- hour support, and though you've still got it, it's always that... it's still that on your mind all the time, innit? Yeah. It could be... his hours could be cut. My needs... have not changed at all. So, was that okay? MJ: Yeah, that's perfect! Would you say that these changes sort of came on all at once, or that they gradually started happening? IP: Gradually, but since austerity, yeah. No, it's okay, Mark, carry on. Do you want to ask something? [Laughter] Carry on, Mark, yeah... [Laughter] MJ: So, this is a constant stress for you? Worrying about money? IP: It's not just me; it's about all disabled people. And that's why, now, I think the disabled people's movement needs to come together again more. We need to be very strong and active. So, it's more... complicated for disabled people's rights... we need to do a lot more campaigning again, yeah. But the media is a major barrier, because it... They seem to think we should be happy with what we've got, and a lot of disabled people won't fight. GS: Can you tell us about your role in the Disability Equality Forum, and ... a bit about that, Mark? IP: Well, you've been involved with it for how many years, Mark? About 18 years? So, I was co-chair for many years, but I found it quite frustrating at times... 'cause people have different ideas about what the forum is for, what our priorities are... He recently stood down as co-chair, didn't you, Mark? Yeah. It all got a bit too much, and obviously they've had problems with the funding, haven’t they, Mark? So even now, it's... because the Council have changed their funding streams to equalities groups, it's... caused big problems. Obviously, that's a bit confidential, but... I mean, people know there's funding problems for equalities groups, don't they, Mark? Not the in's and out's of things, and that. GS: That's great. Can you tell us about what you have done with the Disability Equality Forum in the past, and some examples of the work? IP: We were very involved in education... regarding inclusive education. So, we used to do training in schools about... equality, and disability equality. So, we were obviously all involved in the... Since we've had a mayor, especially involved with all the... budget proposals, so when they propose anything around disability, we've... the forum got involved with it... And what about the ILF [Independent Living Fund], Mark, innit? ... Obviously, the IFL [Independent Living Fund] became a major campaign, or the... shutting down of the ILF [Independent Living Fund]. I think people in Bristol- former ILF [Independent Living Fund] users in Bristol- are a lot better off than in other parts of the country, thanks to our... forum's campaigning. MJ: What would you say is the most important aspect of your work that you've done? IP: Sorry, Mark? Yeah... just raising awareness, helping to raise awareness... and I'm obviously... involved in national as well, so... normally in London, but... the Independent Living group's there, so... MJ: How do you feel about... people without disabilities being involved in the campaign? IP: That is a very hard one [00:50:01], 'cause on the one hand, obviously you want to be inclusive, 'cause that's what we're fighting for: inclusion. But on the other hand... in some ways, you need more... disabled people involved, and it's how to motivate them. MJ: How do you think we can start to make changes when it comes to public attitude towards disability? IP: I think the media is the big one, yeah. So, for instance, today, the Commonwealth Games is starting; it's the first time it's... all been as one. So, you mean the... Paralympians, or... So, that's a move forward. They're all doing it at the same time, you mean, Mark, yeah... Not having them separate, yeah. MJ: Can you tell me about any barriers you've faced recently? IP: About recently, or in the past? [Laughter] You think of any recently, Mark? Just... more about your reviews and that, you, mean? Yeah. [Mark drinks tea] GS: ...Can I ask a question? Mark, could you tell us about a typical week for you, at the moment? IP: Every day is different... So, normally, you have different meetings- [text alert sounds] Oh, hang on... Sorry! [Laughter] Sorry, I'll have to... 'Cause it'll keep buzzing otherwise, if we don't... [Picks up phone] It's Virgin Media now, Mark, sorry. I'd have put it on silent if I'd known... You don't get that many texts do you? Sorry, it's just... GS: That's okay. IP: It's... It just keeps buzzing otherwise, all the time. So, every day is different for me; different meetings... Some examples of your meetings, Mark? So today, for example, the... Bristol Disability Equality Forum got an exec meeting, and then... you'll be at Brandon Hill [00:53:40]), yeah, 'cause obviously... it's school holidays this week and last week, and next week, Mark will be back having meetings at Brandon Hill [:53:47]) as a school governor. So, at the end of this month, he'll be doing medical student training, so... students at Bristol University have what they call a '3D week', don't they, so... And also, involved with Bristol University social work course... yeah, you mentioned that, Mark. [Laughter] Medical students, yeah. But the... You're involved a lot with the social work course, aren't you, Mark? So yeah. GS: What do you do with the social work course? IP: ... He'll do lecturing, don't you... on disability equality, and also direct payments and independent living, and [Mark is] involved in planning the course, so you're on the Service Users and Carers Forum, Mark's a part of that. You have been right from the start, haven't you? It started in… was it 2003? So, very busy with that, 'cause- being a certified social worker yourself, Mark- you've obviously got a lot of experience in something, haven't you? ... And you obviously do the odd bits of... training, don't you, yeah. GS : And is your training through an organisation, or is it... your own training? IP: It used to be, didn't it, Mark? You used to do training for charity work, don't you? But when Mark mentioned about (unsure of word [00:55:46]) centre planning... when it was a lot busier, he was involved in Circles Network, which was based in Bristol at the time... they've moved up to (unsure of location [00:55:55]), so Mark's not quite so involved with them. He used to be. Is that okay? Anything else? GS: ... Is there anything else you'd like to share with us, Mark? Any other stories or anecdotes, or anything that you think is important... that we should be asking you? Anything? IP: Covered most things, wanna tell any... [Laughter] No anecdotes, Mark? No? Got any... What about some of the barriers you've faced with your speech and that? Can you give a couple of examples of... So, you used to have a TV repairman come in... And, for example, the man came into the house, and [was] very loud, and very... patronising, yeah. He talked very slow, very loud, as if Mark was deaf or not very bright, and in the end, Mark started mimicking him, and the man didn't have a clue that he was doing it. [Laughter] ... But that's the sort of barriers... It’s more attitudes, not barriers, you always face, innit, Mark? Oh yeah, and he bought a new telephone and had to take it back because there was problems with it, and the man in the shop... again, he was very patronising- treating Mark like he was a child, really... He was on about the time... the hours, and how to change the time on the clock, and Mark... jokingly said, 'what's an hour?’ and then he explained... that there's 60 minutes in an hour, and 60 seconds in a minute! [Laughter] ... It's more attitudes, and not barriers, more than anything nowadays, innit, Mark? 'Cause a lot of places are accessible now, physically. Does that help? MJ: Do you find that this sort of attitude is common when you... go out into Bristol? IP: Yeah. It's still quite... common, innit, Mark? 'Does he take sugar?' MJ: Do you find that people will often talk to, say, your interpreter more than you? IP: Yeah. MJ: Is that frustrating for you? [Mark motions 'yes'] IP: You quite often makes jokes about it, don't you, Mark? That's how Mark gets around it, yeah. And I, obviously, working for Mark myself, I try not to make eye contact with people if they're doing that. 'Cause he... People tend to get the message when... In other word's, I'd look at Mark when they're talking to me, and they tend to get the message, don't they, Mark? It should be you they're talking to. Fair enough, when I'm interpreting I look at them in their eyes... GS: Has a sense of humour been important to you? IP: Very, yes. [Mark laughs] GS: Thank you so much for sharing. Tim, can I ask you to pause it?[01:00:00] IP: Right, I don’t want to mess it up! Shuffling,
End of interview.
MJ: Right, this is the Accentuate Oral History Project. My name is Martha, I’ve been interviewing; can you say your name for me?
Interpreter (IP): Mark Williams
MJ: And your place of birth and when you were born.
IP: I was born on the first of June, 1965 in Bristol.
MJ: And the date is the fourth of April, 2018.
IP: Is it okay?
MJ: Okay, brilliant… So, Mark, can you tell me anything about your childhood?
IP: How long do you have? [Laughter] Ah, well, [laughter], he can’t even remember his date of birth! I was born in 1965, and I was breech birth. So, in the… first three years of my- of your life, Mark? Yeah, yeah… [I] spent a lot of time in hospital doing physio, and my mum was told to, ah, put me away somewhere and forget about me. So walk away, basically, yeah.
I then went to Claremont School in Henleaze, which was a special school. So, I was just over three years… and three months of age? So, I was picked up by a taxi at quarter past eight, and didn’t get home then ‘till gone five… Just over three years of age, weren’t you? I never communicated at all. And so it was… very… traumatic? Stressful for me and my mum, yeah. So, most of the time at school I spent was just doing physio, and if I managed to put one sock on, which took me about four hours, they put a gold- was it a gold star? - on the wall. And they tried to make… me walk, and all the teachers thought… I was quite demanding, because I… well, you were frustrated, I expect, weren’t you? What there? Oh, you’re not demanding now, no. No you’re not, Mark. [Laughter]
I had one physiotherapist who made me very ill, and very depressed. So, my mum knew what I was capable of, but the head teacher said to my mum that ‘you will be very disappointed.’ So I then went to another classroom when I was… thirteen? So you spent ten years doing nothing, basically, Mark. And Mum asked if I could do some homework, And in a textbook, I had ten questions… The questions included, ‘How many eyes do you have? How many ears do you have?’ And I was… 13, so [it was] very demoralising.
So, my mum wanted me to obviously try and get me out of there, and then I went to another specialist school; so, that was South Bristol school. And… But they’d never had anyone with my impairment before. I remember two things: So… first thing was with… the Deputy Head would not teach me- he was an English teacher, weren’t he, Mark? - so I had to have my English lesson with a remedial teacher every day, and also, my mum had to come over every day to feed me, ‘cause there weren’t anyone there willing to feed me. So… In one way, it shows how things have moved forward, and obviously I’ll come to the barriers later.
So, when I was 15 and a half you had to start thinking about what you were gonna do at sixteen…at school. So, at that time, all disabled children were encouraged to go away to college to make themselves more independent. I never wanted to do that. So, at South Bristol School, that was the only way they'd... oh, so the only way they'd take me on there was to- or, to keep me on, sorry- was to, um, have an educational assessment. However, it was in Devon... at a boarding school. So, I... already had a further education- the department there? - yeah. So, when I went for the assessment... The one day I went there... I was never told so many lies in my life. They said 'everything… there is marvellous.’ You would do... ten? [Mark repeats word a few times] - Oh yeah, the tors... on Dartmoor, yeah? - So, you'd do whatever you wanted. You'd be out every night, [Mark laughs] - ha ha ha, yeah, that's funny, Mark. [Laughter] Anyway, I decided to... try it, and go for two years... But coming home every other weekend. So, every fortnight, in other words, Mark, yeah. I only stayed three weeks. It was hell, yeah. I'd never felt bitter before, but I really did now. So, on the noticeboard, my time to be in my pyjamas was half past seven. [00:10:00] What other 16-year-old wouldn't wanna be in their pyjamas at half past seven? ... It made me very bitter. And very angry. And very patronised, yeah.
So, the second time I went home for the weekend, my mum said, 'you're... not going back'. So, Avon County Council, as it was at that time, was... the education authorities. And ... Mum phoned them up to say that Mark weren't going back, and... they said, 'we'll have to come and see you.’ And about - how many years later? - 38 years later, they still haven't come for a visit yet, so... you're still waiting for them, Mark? To come and talk about your education? [Laughter]…it was a very hard period at that time, yeah. Here, see? [Laughter]
MJ: Okay... so- IP: How are we doing? MJ: Good! Perfectly, yeah, great. ...Your younger years were filled with a lot of frustration, evidently. Did that extend to interacting with other students and peers? IP: At that point, yes. MJ: Okay. Was your mother your... main source of support, then? IP: Yes, yeah. MJ: Right. ...So, when did you get involved in campaigning for the rights of disabled people? IP: So, I just carry on for what happened... When you left school, you mean? ... And that was how you got into it, then, weren't it, yeah? ... So all the local authority at the time would offer me was three days in a day centre, three days a week, and my mum...with help from mum. managed to get me into a mainstream college. Yeah, first of all, it was on a course that [was] for people who had not done well at school... obviously, Mark hadn't done well at school 'cause he hadn't been educated at all. [Laughter] I remember this was 1982? ... Didn't have any personal assistant no PA’s , and disabled people weren't really seen in the community. So, I remember wheeling myself into the canteen... and they all looked at me as if I'd come from Mars. ... So, It took about six months... to recognise my talents, humour, wit, you know, and knowledge, and I stayed there, then, for four years, and managed to get four O Levels and one A Level, Which, the A Level was in Politics. And (unsure of two words [00:14:29]) , was aim then was to end up at number 10, so you'd got political there Mark hadn't you. You’d got into politics. So at that time I met some other disabled people, and ... we decided then to start up what was known as the Avon Coalition of Disabled People. ...There's a picture of me in the M Shed protesting with other disabled people outside the Arnolfini. That was before the coalition started. But it was some of the people who started the Coalition, weren't there? So, the aim, then, of the Coalition was to set up a centre for independent living, as it was called then. And at that time, the Coalition was... quite political. ...We did many campaigns for- was it Children in Need? Or it would have been the other one, weren't it, Mark? Yeah, the telethon, weren't it? - ...There was a telethon, which was the precursor to Children in Need, weren't it? And it was on ITV, weren't it, yeah. And then he got involved with Direct Action Network- DAN is the acronym- and got involved with many campaigns, in Bristol and in London, in the capital... weren't it, Mark? Oh, yeah, and after spending six years at the South Bristol College, where you got your O Levels and A Levels, then moved on to Bristol Polytechnic, where I... did a Social Work course for four years. That was very hard. And that was when my family started funding my own... personal assistant. To write your notes and that, weren't it, Mark? To help you with your course, yeah. ... I was still involved with the Coalition- while you were doing your course, yeah? - and in 1993, I decided to try and move in on my own. So at that time, the... the old ILF (https://www.disabilityrightsuk.org/independent-living-fund ), but that had sort of changed, innit Mark? ... So, you had to have ... -it was about 250 pound a week, was it, Mark? - support from the local authority before you could apply for the Independent Living Fund. So at that time, the local authority had not started direct payments, and they wanted me to have home care. So, I fought very hard... to get direct payments, which was a new thing at the time. I had a file about that thick, [indicates large size with hands] but in the end, the authority gave me direct payments. ... And so I also managed to get the ILF [Independent Living Fund]. So what about the campaign? WECIL Mark? MJ: ... So, what sort of things did you do within the movement when it came to campaigning? IP: ... Anything to do with politics- [00:20:00] well, give an example, Mark? Of what you did in Bristol?-... So, protested at [Bristol] Parkway train station, 'cause it was inaccessible, so you've... handcuffed yourself to trains and busses and that, haven’t you? And did the same in London, 'cause obviously that's where the Parliament was. Did a lot of protesting outside Houses of Parliament, and... my PA at the time got arrested, so I was on my own in London, [laughter] for four hours in the middle of London. So, they didn't arrest you, Mark, hey arrested your PA, didn't they? MJ: Did you feel that your protesting made a difference in terms of accessibility? IP: So... up to 2010, I think the team of people's movement had moved forward a lot... for instance, the Disability Discrimination Act came in in 1995, so that was... pressure from the disabled people's movement on the government at the time. But since 2010, since the... coalition government came in, it's gone down hill, basically, Mark, hasn't it? Yeah. You think it's gone backwards? MJ: How did you feel about having other disabled people around you a lot of the time? IP: I think at school, it didn't... help, 'cause we were all in the same boat, and you were never able to mix with non- disabled people. I think... with the disabled people's movement, it had to be disabled people fighting for their rights, otherwise it wouldn't have worked. MJ: ... So, going back to... sort of, now, present time, what do you think it's like living in Bristol today? IP: ...So, when you look at the exhibition at the M Shed, for instance, you realise you've moved forward, to a point, but obviously realising how much more there is to do; and you realise how fragile... direct payments are with all the cutbacks that are going on. MJ: Mhmm ... What would you like to see done in terms of disability? Other than, you know, payments, and things like that? IP: I think it's about general attitudes. So, if you look at the media, for instance, now, they're... sort of portraying disabled people as scroungers, and ... it seems to be never positive. MJ: Do you think this attitude in society has changed over the years, since you were young? IP: A bit, yeah. Has it gone backwards, like you said, Mark? MJ: Are there any positive experiences you've had around Bristol? IP: I think about... about WECIL [West of England Centre for Inclusive Living] and all that, Mark, 'cause you haven't mentioned it. It was really positive when we set up the West of England Centre for Inclusive Living, this is called now WECIL- because you were a founder member? - I was a founder member of the whole independent living movement in Bristol, 'cause a lot of people forget about that, Mark, yeah? GS: Can you tell us more about when that was set up, and ... what happened at that time? IP: Is it alright if I have a cup of tea first? MJ: Yes. (Break at [00:26:28]) IP: You ready again, Yeah? MJ: Okay. So, can you tell me a bit more about the people you founded the movement with? IP: So, there was about... four of you, yeah? We met every Tuesday night for about a year... in Half Baked restaurant [00:27:04]), which is in town, yeah... we had to decide what we wanted. So we really wanted a centre for independent living from the start, which were around in other parts of the country, weren't they, Mark? But we obviously needed to set up the Coalition first- which was more a campaigning group, weren't it, Mark, yeah? - so we obviously had to fight for our rights... what you really had then was on one side... in theory, you had the Coalition on one side, which was campaigning for people's rights, and on the other side was WECIL [West of England Centre for Inclusive Living], which... was more of a service provider. So, that was the ideal picture... Coalition, the CIL [Centre for Independent Living] both working together; and for a while, it worked. GS: ...Do you mind me just... What year was this, Mark? IP: So, the Coalition started in about 1989... but you're not sure exactly of the date? ... I could find that out for you? GS: We can do it after. IP: Yeah, so, it was '95... WECIL [West of England Centre for Inclusive Living] started in September 1995... for me, it was a real pity when the Coalition ended... 'cause then you had the lack of campaigning. So the campaigning ended. [00:30:01] It was about 2005 when it ended, yeah? So, at that time, everything seemed quite rosy... we obviously had the DDA [Disability Discrimination Act] come in, we had direct payments with WECIL [West of England Centre for Inclusive Living]... We had a lot of support groups around direct payments... self-advocacy, which was very ... forward moving for the movement, yeah. And then 2010 came- is that what you're saying, Mark? Yeah- ... the Coalition ended... about 2007, oh... not sure exactly, it was 'round about that time. That was a lot to do with funding, and in a way the people... who set it up had moved on, and a lot of them... were then working for [Bristol City] Council, so, really, how could you work for the Council in the day, and then campaign against the Council at night? So, it was a bit of a contradiction, wasn't it, Mark? Yeah. How I see it, that was a major problem. So, we had... at least three activists... who ended up working for the Council; so there was a bit of conflict of interest, you mean, Mark, yeah. About the council... were the Coalition workers working for the Council? MJ: Would you say that attitudes outside of the disabled community were positive, then? At the beginning? IP: At that time, yes. So, between 2005 and 2010... things were moving on; I was training as a disability equality trainer... doing a lot of training around person centred planning and all that. So, did it in Ireland, Scotland, Wales, Northern Ireland... going all over the UK, and it really felt like the movement was moving forward. And then Cameron came in, yeah. [Laughter] Say no more, Mark. [Laughter] MJ: So, do you feel that all of the work that has been done has just... slowly gone backwards? IP: We are in a better place than we were in 1981, but we are moving backwards, yeah. So, when I do a talk -for instance, at... you do talks at schools, don't you, Mark, to the children? - and there's always disabled children there, at mainstream school, so that's... In that respect, it's gone forward, yeah. Things have moved forward. ... But in other ways, things are moving forward; for instance, when I had... a review about my payments last year- do you want me to talk about that? Yeah? - So, right from the start, living on my own, I've always had 24-hour support, 'cause I need it. Do you wanna explain how it was before, Mark? When you were on Independent living? It's just giving context, innit? When I was on the ILF [Independent Living Fund], ... when I wanted to go on holiday, I would write a letter to them, to have extra funding so I could take two PA's on holiday -'cause obviously Mark only has funding for one PA- ... that was always no problem. So, they give you the extra funding... to take two people on holiday, would you, yep. However, Bristol City Council won't do that [anymore], they won't fund you. So... you used to have a two year review every two years, didn't you, with the... ILF [Independent Living Fund], and there was never any problems... just go through the process and say you still needed your ILF [Independent Living Fund]. ... When the ILF [Independent Living Fund] closed in 2015, I had a... big review with the Council, which, in the end, was no problem, at the time. Part of the... When it was transferred... [Text alert sounds] Oops, that's Mark's phone, sorry! [Laughter] Is it all right if I just move it? Sorry... No, it's all right, Mark, I'll just make sure. It's only your mum, Mark. [Laughter] Nothing vital! Is that all right? Is it okay if we... I'll try to... I'll answer it, because it'll keep buzzing, that's the... problem with it, it keeps... If you don't open it up... [Picks up phone, opens message] So, when... the ILF [Independent Living Fund] was closing, the Bristol Disability Equality Forum had a conference [00:40:00], and then they fought hard to make sure that, obviously, we... still got our direct payments; people who used to be on the ILF [Independent Living Fund]. And they have a panel... A local authority has of what they call a 'panel discussion', and... Mark's direct payments were... approved. But last year, when I went on holiday, I obviously had to negotiate paying the two PA's... and with the living wage and that, weren't you... Mark was concerned that he obviously weren't paying them [the] correct amount of money. So when I came back, I phoned WECIL [West of England Centre for Inclusive Living] for advice [00:41:00], and the next thing I knew, I ended up with another review from the Council. And that was hell. I ended up having to write a diary for [a] fortnight; so, everything I do in my life. They suggested that I spend perhaps half an hour- a quarter of an hour to start with, weren't it, Mark? Then going up to half an hour- spending time on my own to make me more independent. [Mark laughs] a suggestion from the social worker, weren't it, Mark? [Continued laughter] Well, you can tell what Mark's reaction to that is! So, obviously, I was very concerned about being left... You were worried, then, that... they'd decide to leave you on your own at night, didn't they, Mark? And obviously, that risk of fire, and everything... obviously, Mum was very concerned about that... When Mark had his first review... Mark's mum was saying, you know, 'What about the risk of fire if he was left on his own?' And the social worker said, 'Well, that doesn't happen very often. It's not like it'd happen...' you know. Only needs to happen once... [Laughter] 00:42:45] But the second review, weren't it, Mark, you had problems convincing them that you still needed his 24- hour support, and though you've still got it, it's always that... it's still that on your mind all the time, innit? Yeah. It could be... his hours could be cut. My needs... have not changed at all. So, was that okay? MJ: Yeah, that's perfect! Would you say that these changes sort of came on all at once, or that they gradually started happening? IP: Gradually, but since austerity, yeah. No, it's okay, Mark, carry on. Do you want to ask something? [Laughter] Carry on, Mark, yeah... [Laughter] MJ: So, this is a constant stress for you? Worrying about money? IP: It's not just me; it's about all disabled people. And that's why, now, I think the disabled people's movement needs to come together again more. We need to be very strong and active. So, it's more... complicated for disabled people's rights... we need to do a lot more campaigning again, yeah. But the media is a major barrier, because it... They seem to think we should be happy with what we've got, and a lot of disabled people won't fight. GS: Can you tell us about your role in the Disability Equality Forum, and ... a bit about that, Mark? IP: Well, you've been involved with it for how many years, Mark? About 18 years? So, I was co-chair for many years, but I found it quite frustrating at times... 'cause people have different ideas about what the forum is for, what our priorities are... He recently stood down as co-chair, didn't you, Mark? Yeah. It all got a bit too much, and obviously they've had problems with the funding, haven’t they, Mark? So even now, it's... because the Council have changed their funding streams to equalities groups, it's... caused big problems. Obviously, that's a bit confidential, but... I mean, people know there's funding problems for equalities groups, don't they, Mark? Not the in's and out's of things, and that. GS: That's great. Can you tell us about what you have done with the Disability Equality Forum in the past, and some examples of the work? IP: We were very involved in education... regarding inclusive education. So, we used to do training in schools about... equality, and disability equality. So, we were obviously all involved in the... Since we've had a mayor, especially involved with all the... budget proposals, so when they propose anything around disability, we've... the forum got involved with it... And what about the ILF [Independent Living Fund], Mark, innit? ... Obviously, the IFL [Independent Living Fund] became a major campaign, or the... shutting down of the ILF [Independent Living Fund]. I think people in Bristol- former ILF [Independent Living Fund] users in Bristol- are a lot better off than in other parts of the country, thanks to our... forum's campaigning. MJ: What would you say is the most important aspect of your work that you've done? IP: Sorry, Mark? Yeah... just raising awareness, helping to raise awareness... and I'm obviously... involved in national as well, so... normally in London, but... the Independent Living group's there, so... MJ: How do you feel about... people without disabilities being involved in the campaign? IP: That is a very hard one [00:50:01], 'cause on the one hand, obviously you want to be inclusive, 'cause that's what we're fighting for: inclusion. But on the other hand... in some ways, you need more... disabled people involved, and it's how to motivate them. MJ: How do you think we can start to make changes when it comes to public attitude towards disability? IP: I think the media is the big one, yeah. So, for instance, today, the Commonwealth Games is starting; it's the first time it's... all been as one. So, you mean the... Paralympians, or... So, that's a move forward. They're all doing it at the same time, you mean, Mark, yeah... Not having them separate, yeah. MJ: Can you tell me about any barriers you've faced recently? IP: About recently, or in the past? [Laughter] You think of any recently, Mark? Just... more about your reviews and that, you, mean? Yeah. [Mark drinks tea] GS: ...Can I ask a question? Mark, could you tell us about a typical week for you, at the moment? IP: Every day is different... So, normally, you have different meetings- [text alert sounds] Oh, hang on... Sorry! [Laughter] Sorry, I'll have to... 'Cause it'll keep buzzing otherwise, if we don't... [Picks up phone] It's Virgin Media now, Mark, sorry. I'd have put it on silent if I'd known... You don't get that many texts do you? Sorry, it's just... GS: That's okay. IP: It's... It just keeps buzzing otherwise, all the time. So, every day is different for me; different meetings... Some examples of your meetings, Mark? So today, for example, the... Bristol Disability Equality Forum got an exec meeting, and then... you'll be at Brandon Hill [00:53:40]), yeah, 'cause obviously... it's school holidays this week and last week, and next week, Mark will be back having meetings at Brandon Hill [:53:47]) as a school governor. So, at the end of this month, he'll be doing medical student training, so... students at Bristol University have what they call a '3D week', don't they, so... And also, involved with Bristol University social work course... yeah, you mentioned that, Mark. [Laughter] Medical students, yeah. But the... You're involved a lot with the social work course, aren't you, Mark? So yeah. GS: What do you do with the social work course? IP: ... He'll do lecturing, don't you... on disability equality, and also direct payments and independent living, and [Mark is] involved in planning the course, so you're on the Service Users and Carers Forum, Mark's a part of that. You have been right from the start, haven't you? It started in… was it 2003? So, very busy with that, 'cause- being a certified social worker yourself, Mark- you've obviously got a lot of experience in something, haven't you? ... And you obviously do the odd bits of... training, don't you, yeah. GS : And is your training through an organisation, or is it... your own training? IP: It used to be, didn't it, Mark? You used to do training for charity work, don't you? But when Mark mentioned about (unsure of word [00:55:46]) centre planning... when it was a lot busier, he was involved in Circles Network, which was based in Bristol at the time... they've moved up to (unsure of location [00:55:55]), so Mark's not quite so involved with them. He used to be. Is that okay? Anything else? GS: ... Is there anything else you'd like to share with us, Mark? Any other stories or anecdotes, or anything that you think is important... that we should be asking you? Anything? IP: Covered most things, wanna tell any... [Laughter] No anecdotes, Mark? No? Got any... What about some of the barriers you've faced with your speech and that? Can you give a couple of examples of... So, you used to have a TV repairman come in... And, for example, the man came into the house, and [was] very loud, and very... patronising, yeah. He talked very slow, very loud, as if Mark was deaf or not very bright, and in the end, Mark started mimicking him, and the man didn't have a clue that he was doing it. [Laughter] ... But that's the sort of barriers... It’s more attitudes, not barriers, you always face, innit, Mark? Oh yeah, and he bought a new telephone and had to take it back because there was problems with it, and the man in the shop... again, he was very patronising- treating Mark like he was a child, really... He was on about the time... the hours, and how to change the time on the clock, and Mark... jokingly said, 'what's an hour?’ and then he explained... that there's 60 minutes in an hour, and 60 seconds in a minute! [Laughter] ... It's more attitudes, and not barriers, more than anything nowadays, innit, Mark? 'Cause a lot of places are accessible now, physically. Does that help? MJ: Do you find that this sort of attitude is common when you... go out into Bristol? IP: Yeah. It's still quite... common, innit, Mark? 'Does he take sugar?' MJ: Do you find that people will often talk to, say, your interpreter more than you? IP: Yeah. MJ: Is that frustrating for you? [Mark motions 'yes'] IP: You quite often makes jokes about it, don't you, Mark? That's how Mark gets around it, yeah. And I, obviously, working for Mark myself, I try not to make eye contact with people if they're doing that. 'Cause he... People tend to get the message when... In other word's, I'd look at Mark when they're talking to me, and they tend to get the message, don't they, Mark? It should be you they're talking to. Fair enough, when I'm interpreting I look at them in their eyes... GS: Has a sense of humour been important to you? IP: Very, yes. [Mark laughs] GS: Thank you so much for sharing. Tim, can I ask you to pause it?[01:00:00] IP: Right, I don’t want to mess it up! Shuffling,
End of interview.
