SC: This interview is being recorded by Sue Cullimore on Sunday March 25th 2018 at the M Shed in Bristol for the Accentuate History of Place Project. What's your name? SL: My name is Stephen Lightbown. SC: Where were you born? SL: I was born in Blackburn. SC: What year? SL: 1979. SC: So can you tell me a bit about your background? SL: Yes sure, so I think as I say I was born in Blackburn, lived there, well I was born in Blackburn but lived most of my life in a small town called Darwen, small Lancashire town, went to school there etc and lived there until I was about eighteen, sorry twenty one and then I went to... I lived there while I was at uni so I lived at home when I was at uni, then spent a bit of time in Preston, sort of worked there, then went to Manchester for a year then down in London for eight years and been in Bristol for the past 18 months or so , so I’ve kind of been down here for a while now, down in the south, even though I’ve still retained my accent, I’ve been down here for a while, down in the south. But I think one of the main things I guess was in that period of time the big thing for me was having an accident when I was 16 and that resulted in me being a wheelchair user and that was a sledging accident, so I had that in January 1996, 27th January 1996 and, yeh, so we'd had, I dont know, an epic amount of snow that winter and I’d gone out sledging and had an accident, I was, I'd been out all day I think doing, dunno, messing about and doing a whole host of stuff, and towards the end of the day it was getting dark about 5 o’clock and we were going home, me and my group of friends, and I decided to have one last sledge before...I don't know whether that's the correct term, a sledge, and I went backwards for some unknown reason which I’d not done at any point during the day, and it was dark, I hit a tree and broke my back. I was very lucky, you can look at it two ways, I was either very lucky or very unlucky because there was one tree in the field and I was very unlucky to find it but was lucky in the sense that the accident I had could have been far worse. My friends called out and I lifted my head at the last minute and I think because of that, if id not done that I wouldn't be here or my accident injury would have been significantly, significantly worse. But it was still pretty...apologies if it’s a bit... I think it’s still useful for the context, it’s still pretty grim, so I broke my back in four different places, but the injury completely disintegrated the four vertebrae in my spine, snapped my spinal cord, broke every one of my ribs and... so it was a pretty good effort (laughs) and I was sort of, I was then was transferred to Blackburn Royal Infirmary where I spent 24 hours, 48 hours just to stabilise. I had quite bad hypothermia from being in the snow for as long as I was, it was quite difficult for the ambulance to get to me. The first thing they had to do was kind of defrost me, cut all my clothes off, and you know, I look back now and I'd worn two pairs of jeans which probably if I remember now is not the wisest thing to go sledging in, it made it quite difficult to get off. And then I was transferred to Southport Spinal Unit, its probably about an hours drive away from where I lived but it was a lot longer than that because they had to drive very very slowly to transfer me and the reason I was taken to Southport is there’s, I don’t know the number now but at the time there was about 15 spinal units across the country and Southport was the main one for the northwest of England. And I was transferred to Southport Spinal Unit and I spent 6 months there and I was admitted on the 28 January and discharged on the 19 July which I remember for two reasons, one that's my older brother's birthday and secondly it was also the day I should have finished school for the summer holidays so it was my last year at school so actually I missed the last 6 months of school so didn't have any, didn't take my exams, I was just given passes to go into 6th form, so I had the same 6 weeks off that everybody else had and then went back to 6th form, which, I look back now and think that 6 months out of school and coming to terms with my accident was huge. I wasn't exceptionally bright but I was bright enough that I was on for some decent grades. I was by no means a straight A’s student but I was good at things I was interested in, and my grades took a big step back I think, so I think mainly because it just took me a while to get used to everything again, really, everything was different, and I think about that kind of experience at that time, of being in hospital and all I wanted to do was going home, until the last week, maybe, the few days before I was due to go home and then the last thing I wanted to do was go home because I’d been normalised in that hospital environment and everyone around me was in the same position so actually that was a unique environment for me in my entire life, of everybody in that unit being a wheelchair user and being in the same position as I was. Actually the only time it wasnt unique was at the Paralympic Games in London, which I can come to later, and what was interesting for me was then going home as soon as I left hospital, everything was different, so everything, even going home, that whole environment of getting to my front door, and there was a step to the front door, so we'd not necessarily had the support, for somebody come and build a ramp before I came home so for, and my bedroom which was upstairs and I was then moved into the front room and everything, you know, like mirrors that hadn't been changed, so there were all things still that hadn't been changed, so then everything was different so every experience I'd had before that was changed so I had to kind of come to terms with that. So we lived in that house for about 18 months I think, so in the front room, so I think, it was where I slept, where I washed, where I went to the toilet, everything was in that environment. So I asked my mum about this, why we didn't get a ramp up to the door, why I had 18 months of being lifted up to the front door, of not being able to get in and out of the house on my own, and then we moved, we sold the house and we were waiting for another house. My mum and dad had separated when I was much younger, wed had a bit of a grant from the council to do up the property but it took a long time for us to get a house that was big enough and that we could adapt which is what we were, so that was a really interesting, well you look back and it didn't feel interesting at the time, it was pretty grim. And at the same time of, you know, I'd changed schools, even that wasn't familiar, I’d gone to 6th form and it was sixth form in a different town, so on the one hand that was great because when I joined that sixth form apart from the five or six of my friends who'd also gone to that same sixth form all my school group had gone to a different college in Blackburn, and I'd gone to Bolton which actually, again I look back on that and am quite happy for, because when I went to 6th form, nobody knew me before that, so I was able to adjust, I was just me there and that was the first time I’d had my core group of friends were still there and I look back and I don't think there is ever a good time to have an accident like that but I think sometimes maybe I was, maybe I feel fortunate that I had it when I was 16 because it felt very much a period of my life where things were probably about to change. I look at some of the people who were maybe 50 or 40, 60 or whatever and they were in work, theyd got families, they'd got a house, they'd got an environment they were familiar with and they had to go back and try and fit into that. Whereas for me everything was about to change anyway, so I was about to think about work, or where I was going to live or moving home, starting a family, whatever that might be, I hadn't done any of that, so it was all going to be new, it was all going to be new in a different set of circumstances. So that, yeh, that was interesting. Then after sixth form I went to university, in Preston and I wanted to do, I’d always wanted, I’d been interested anyway at school in the media and communications and the way that advertising and that sort of stuff, but I'd started to think about the way that people had spoken to me and so I'd changed one of my A levels to Communication Studies cos of that interest for me in terms of actually how we interact, communicate with different people because I'd seen the change in me, and that led me to think about doing a Public Relations degree, about reputation management, and again, I'd thought about my reputation and the way I was perceived and it just kind of felt, it just changed... I mean at that time of my accident I'd wanted to be a fireman or something to do with... very ramdomly, there were three things I wanted to do: I wanted to be a country ranger building drystone walls in the countryside, I wanted to be a fireman or I wanted to be a lighting technician in the theatre. Three very random things but very three physical, active, outdoory type jobs. I'd never seen myself being sort of in a desk environment. But that changed, so I changed all of my A levels and then chose three different things, cos those things were no longer an option for me. [Time: 00:11:00] SC: What did you do? SL: I did Communication Studies, Geography and Government and Politics and General Studies which was in there as well, and, those three sort of led me towards the stronger, the strongest out of those three was Communication Studies and that led to studying public relations at university. And it just so happened that I had three choices at university, one was Leads, Bournemouth and Preston but at that time it wasn't, Public Relations wasn't something that people were doing academically and Preston had the best reputation and it was fortunate it was near home so at least I was able to stay at home and have that kind of stability and I don’t know if that was a good thing or a bad thing but it meant that I still had the support network of family and friends locally and things. And things and then yeah went to university for 3 years and actually my grades started to pick up again through those 3 years. I did alright actually I did as well I probably could have hoped, but I think if I’d done another year I’d have done quite well cos I’d started to get my brain back into academia and sort of focused a bit more. I think your grades are meant to, you know your grades if I’d picked up...I’d have done alright. But the very ramdom thing for me that happened at uni was that you get sent on a work placement in your final year to see what kind of work environment you want to go into, whether you want to go into what is called ' in house' so you know for instance here at the M Shed you might have your own PR person, or like agency where you might go to a firm and ask them to do your PR and things like that for you, and I'd thought because of my chair I didnt, I wanted to do something In House because I knew I could then work in an environment I knew was set up and I din't need to move around a lot so I ticked that box and when it came back by sheer serendipity or whatever it was, my placement was at Southport Spinal Unit, the hospital where the Spinal Unit was. So I went back and I was sat in the media office, the PR office in a hospital I'd been in three years earlier, was still an outpatient of, well five years earlier was still and outpatient of. I was reading through the press cuttings of the negative things people were saying about that hospital and I thought this is not my experience of this and I thought, right, actually I want to now do PR for the NHS and because I didn’t want to be a doctor, but maybe theres a way I can do something to kind of say thanks and pay that back. It was the first year, so after uni I was fortunate I got a job more or less straightaway which I thought was interesting because I thought my chair would be a barrier to that but it wasn’t. Then I was made redundant after that, after 18 months but then I got a job at Preston Hospital and I’ve stayed in the NHS ever since, and actually in that time has led me to what I suppose has been a fairly successful career. So I started off in a hospital and I worked in that hospital and I thought do you know what I feel like I’m doing something in a hospital but I wanna work, I think I can do more than a hospital environment to help the NHS, so then I went to the regional body of the NHS for the North West and I did that for 18 months or so and then still thought, do you know what, I’m only able to do the North West so I went to London and did the same job for the regional body in London as I thought that's where all the decisions are in London and then spent a good few years down there, and then I thought do you know what maybe I’ve got a broader hoop than that and then I ended up becoming the Communications Advisor to the Chief Executive of the NHS so it was a national role and I did that for a year and that was a fascinating period of time that involved a lot of travelling. It was very stressful, it sort of coordinated with what was an incredibly difficult time for the NHS. There was quite a serious report out into failings, multiple failings. SC: What year was that? SL: That was 2013 and there was a serious report about the failings of the NHS at Mid Staffs Hospital and that year was around trying to really salvage the reputation of, and that, yeah. So that was a really interesting piece, and then after that, I only managed that for a year, just because I was burnt out. One of the things at the same time is having a disability and I sort of forget that but it, you know, I get up earlier to do sort of medical routines and physio and things like that. So I get up around 4.30 in the morning and then have to go to work, so doing a job that demanded travel and all that sort of stuff, it, I was frustrated, I wish I’d done more good, but, then after that I did some stuff for the Mayor of London, but around looking at the health of Londoners and how we could make some health improvements there. And so he'd commissioned Professor Aradazi who'd done quite a few reviews of the NHS before to do this thing for London. So I did some stuff for that for a year then went back to do some more stuff for London at the regional level then I thought I’d had kind of enough of the strains of that and ended up in Bristol, full circle now as a Director of Comms for a hospital rather than at the entry level that I'd gone into originally, so, I've kind of, full circle now, 15 years later and that brings us pretty much to here. SC: Well we can look at the kind of Bristol thing and any other places that you want to talk about. But I think maybe what would be useful to hear about now would be you mentioned for example that early morning routine and you know just the wheelchair thing being, you thought a barrier and it didn't, wasn't particularly in terms of getting a job. Can you talk more about the fact that you are in a wheelchair and you've been doing some very, very demanding jobs, and you've forged ahead with a career? How has that worked? SL: Well I don't know whether or not. Again I sort of, was always fairly headstrong when I was young so I was always, would always kind of take a few risks and things like that which has obviously led to my accident. I'd never, prior to my accident I'd been in hospital a few times just from, not from being careless or accident prone, but just cos I was doing daft stuff. So I'd broken my collar bone playing football, I'd broken my wrist riding my bike, I'd had an operation on my eye, I'd had an accident and stuff like that, so I'd, was always chucking myself into stuff and, you know, would've felt fairly invincible and once I had my accident I had to get used to people saying 'you can't do that', 'you're never going to be able to do that', that's not going to be possible, you're not going to work, you're going to have to stay at home, I'll look after you. And none of that sort of, and I think, I look at my mum said two words to me, which really stuck. She just said 'nothing changes', and my dad had a different, I was going to say my Mum and Dad were separated, and my dad took a lot more, more difficult for my dad I think, because it was, he couldnt get his head around it I think. But I lived at home with my mum and she said, as I say, nothing changes, and my grandparents on my mum's side, I didn't know my grandparents on my dad's side, they’d died when he was 16. But my granddad in particular was of that mindset, you know. Hed had a stroke when he was in his 30’s I think and just discharged himself and went home said he’d sort himself out and went back to being a mechanic. And so, it was that mentality, I was fortunate that I had really good role models. You know, when my mum and dad separated, my mum was 40 and she didn’t have a career or a job at that point, she had 3 boys that she then took on and went to university at 40, became a probation office and then ended up running a family court welfare service for the North West of England by the time she was 50. So I had that mentality and role model I think from a very early age. You know that it was the, you do what you want to do, you've just got to kind of apply yourself. And that was really important to me, there was nothing wrong with my brain, so what I was able to do, I guess, was university we'd develop this portfolio but I still just had this kind of confidence I think. So I don't know whether or not I've been fortunate in that most of the jobs I've ever gone for, I've got, but I don't know how many jobs I've not been invited to interview for because I've had a disability or been in a wheelchair. And also maybe I've taken safer choices in my places that I've applied because I've, you know, created quite a good career for myself in the NHS so that stacks up for itself, you know, every job that I go for in the NHS they can see that, well that has't stopped me from doing that national job, so why would it stop you from working in that one location in Bristol. So I think that has maybe helped. And what I've achieved in my career hasn't neccessarily put me, that kind of stacks up on any CV, compared to anyone I would think. So I don't think that has put me of, but it has, but I feel as though I have been restricted in where I can apply and some of the things I would want to do. I mean if you'd asked me at 16 I would never have said I'd want to work in PR in the NHS. So in terms of the careers I'd wanted to do, had in my mind, I haven't fulfilled that and I guess even now, having a successful career I do feel unfulfilled about being desk bound for the past 15 years when I wish I'd been more active and out and about and doing that sort of stuff. [Time: 00:21:23] But at the same time I've ran workshops in Doha on the back of my career so I've not wanted for experiences but I wonder at what cost that driver has been for me in terms of wanting to be as successful as I can possibly be, so even now I've not settled with where I am, I've always pushed myself every 18 months, every two years to think, do you know what I can do something more than this, because I feel as though I can, still got this drive to kind of continually keep proving people wrong. But that had led, I think, my sort of, and that driver I think has maybe sometimes at the expense of self care and looking after myself which is, the past couple of years, I've had to scale back a lot of things outside of work, just because I've been exhausted, you know. So having a long term condition and having a disability for 20 odd years actually I think has probably physically aged me more than what my actual age is and that's been hard. There's, I've got aches and pains everywhere but my routine itself I have to get up at 4.30 in the morning, erm, three days a week and that's to kind of, for like bathroom routine, so going to the loo and stuff in the morning takes a couple of hours, so that's, you know, that in itself as weird as it sounds is quite physically demanding to by the time I get to work I'm pretty knackered, one from getting up early and actually the physical exertion of that, and things like stretching and looking after yourself and your legs. They're things that I probably haven't done, I haven't stretched and looked after my legs as much as I should do, in fact I haven't done at all. But then equally I get home after work but then by about 8 o'clock I'm asleep on the sofa to be honest with you, unless I'm out and doing something. I've really, this had to, this past year alone, I've really had to, which has been difficult is to really recognise my own what's the word, limitations, which has been tough. So I've had to say'I'm not doing to do that, or I'm not going to do that or I'm not going to do that', because I was having to take a lot of time off work through ill health and having to sort of make peace with that has been difficult, cause at the same time I've, things I've not been able to do, like take a gap year, or go back packing, so I've tried to travel a lot and places that I've been have been fantastic but not necessarily easy. So I had a friend who moved to China and I went to spend a week with him in Beijing and I went on my own. I've been to New York on my own, I've been to Doha and Dubai on my own and places like that and that has been, you know, they haven't necessarily been relaxing but they've been, you know, one thing that I, I was coeliac as well, so going to China as a wheelchair user and a coeliac and not being able to speak the language [laughs] was pretty, was pretty terrifying but it was alright. So yeah, I think my career, I don't think has necessarily, you know, the biggest compliment that people can pay to me when they talk to me is when I say, it's hard work in the wheelchair, they say 'well I don't even see the chair anymore, I don't recognise the chair' which I think is good, I think that's been a positive thing. yeah. SC: That's very interesting and I can completely get that, but what is it that you're concealing all the time, you know, what are you doing? You talked about your routines in the morning and how long it takes and how tired you get. What are some of the barriers and difficulties when you're out and about? Let's talk about work first and then we can talk about other things. SL: So I think one of the things at work which I do which I do which I sort of, sometimes I have to do and I feel a bit guilty, but I've got no choice really I have to take myself off once or if not twice a day, go to the loo, turn the lights off and have a little five minute siesta, just to recoup some energy and I think that’s difficult. I think, you know, I have to say, sometimes I'll go to work, sometimes I'll get up in the morning and think I just want to go back to bed. You know, I just wish that, I know a lot of people who had accidents at the same time as I did who received quite hefty payouts for compensation cause it wasn't their fault. Sometimes I wish that had happened, you know, do know what, I wish I'd had a couple of million pound payout and I could sit at home and not worry about all of this, because, you know, I'm thirty eight, thirty nine later on this year and all I'm waiting to do now is retire because I'm just exhausted by the mental and physical exertion it takes to get up and go to work every day, go to work, do a physically demanding job that is physically demanding because it isn't that physically demanding because I'm sitting at a desk and wandering around the hospital but I'm, you know, the emotional resilience that I guess, I manage a team of 15 people, so managing those and that sort of thing every day, you know, sometimes I struggle in the winter when it gets cold, from about November until about April, when it gets cold, because I hate the winter. You know I hate it when it snows, I hate everything that sort of happens. It feels almost like a double jeopardy when it snows, because it's this thing that I used to love when I was younger and now I can't bear it and whenever it snows I instantly become sad or whenever I see a news report about the snow I instantly become sad and I've had to figure out ways of dealing with that. But then also when it snows I can't get out in my chair, so I can't get to work and I can't get to the shops, so recently when it snowed for 3 or 4 days at a time I didn't leave my house for 4 days and you know that in itself, you know that in itself it almost feels like it's, you know, what more do you want from the snow. So that is quite difficult but I think what my chair has done as, it's given me a real sense of perspective, so I'm quite calm at work, is one of the bits of feedback I get and I'm fairly unflappable and I also quite a good perspective about what is and isn't important. So I think in some respects I've been told that I've quite an empathetic management style, which people like, working for me and things like that. But at the same time sometimes I have to catch myself because I do, I do annoys me in some respects, that I'm good at what I do but it's not what I want to do, I don't have a real passion for it sometimes and I think that's difficult because I'm always constantly having to say, you've got to go in, you know, motivate myself to get up, go into work and do something I wish I wasn't doing some of the time. SC: Does there seem to be a paradox, you're talking about your ambitions, your still held ambitions for your career and yet a kind of of opposite pull towards retirement? SL: That's right. SC: And you're reconciling that all the time? SL: And those ambitions, that drive to prove people wrong is also in my personal life and that, so you know, as well as being driven at work, and then everything I do I apply myself to in a way of how I can be the best that I can be at this, not necessarily world class but the best that I can be but that isn't healthy when you apply that to everything. You know, so, because I'm sort of constantly find myself comparing myself to my friends, to my family, to people I work with, to other people that I see in wheelchairs. I wanted to almost be, not better than, but, you know, on a par with, or just seen as successful and I think that's not something that I've ever sat easy with me but it still is in there, that I've got to grapple with a lot. SC: So you definitely feel that this is to do with your accident and your disability, rather than your innate personality? SL: Well, it's difficult because I do try and think, right, what was I ;like when I was younger and I sort of, I was, you know, I, and I think, I think it must have been in there, because when I was younger I loved football, I absolutely loved sport. I wasn't very good at it and I remember sort of football, there'd been one summer holiday and I must have played football. I'd got up in the morning, I'd put my football boots on, I'd go outside, I'd play football, it would go dark, I'd go in, I'd get up and do that and I'd do that on repeat for 6 weeks and I remember going back to school on the following and I'd got better at football and everyone was like 'what happened to you?' and I just practised, I was just out there, doing it on repeat, time after time. But the problem is, the other thing that I do, I never really seek out coaching for any of this stuff [Time: 00:30:48] and later on in life I have been doing it because I think, no I'm going to do this myself so, you know, in some respects I only ever get as good as I can get because, I'm sort of, you know, that reluctance to look for help has always been there, when I was younger, in terms of no, I'll figure this out on my own. So even now, one of the massive things you have to deal with in terms of having a disability or being a wheelchair user is every day people coming up to you and offering help. That is the biggest frustration I have, is you know, 'do you want some help?' 'do you need some help?' 'can I give you some help?'. And then when you say 'No', sometimes you get well dont be so stubborn' or' I was only asking, I was only offering'. That for me is the biggest you know, constantly proving people wrong. Or just, and my wife says to me, she's like 'why are you doing that?' and I say 'just to prove that I can. You know, just to prove that I can. You know, that's why I'm doing it'. And that's, that's still in there I guess. And maybe I think I look back and I think that probably was there when I was younger, so that has been fuelled by this. SC: Do you think that is related to your way of maintaining your mental health? SL: I think so, yeah, maybe. I think because even with my mental health I've always you know, I didn't, you know you wre offered counselling and psychological support when you were in hospital but I had one session with this guy. I was very blase about it, I sort of took it hopefully in my stride, you know oh I'll be all right. Then he came out to see me once afterwards and it was only later on in life that I went back to that because I thought actually mentally I do need some support, just to kind of understand. But even then I had a few sessions with a therapist and she was like, and it's 'well I think I'm done now' and she was like, 'most people probably spend 6 to 12 months with me' and you know after 5 or 6 sessions I was 'oh no, I think I've got this sorted, I've got this sussed now thanks'. I've kind gone on and done it I think, yeah. [PAUSE] SC: We were talking about where your strength and your attitude has come from, really and we were talking about your sort of family background and what, where it's all come from, maybe northernness, we mentioned? SL: Yeah, so I think maybe there's an element of that you know. The sort of gritty northernness I think you know. I was from a small town that had kind of gone through a bit of downward spiral and it was very much a cotton town, cotton mill town from the, from that period of kind of trying to reassert itself. And my parents' divorcing when I was younger, that sort of thing. SC: And you have brothers? SL: Yeah, I've got two brothers. I've got an older brother and a younger brother. And really I've also got two half sisters that I don't really have much contact with. My dad was married before and after my mum and I still not really, I, my dad died when I was 21 so I've not, so haven't much connection with his family and actually he was one of, he was the youngest of five but actually all of his siblings have now died, so the, I guess there's been a lot of that as well. You know, lots of people that I've known, that I remember till fairly recently, I've been to more funerals than weddings and things. So I think what that's fostered is quite a tight knit family with my mum and my two brothers and latterly my grandparents on my mum's side both of which have now died as well. But I think we were quite a small but tight knit family. SC: Your mum sounds very strong. SL: Yeah, incredibly so. She's, you know, I look at this, you become incredibly selfish and self absorbed in these scenarios and I don't make apologies for that necessarily but that can only get you so far before you've got to have a bit of self awareness and I'm not, you know, it's only latterly I've really started to think about the impact on my mum who spent pretty much six months by a hospital bed and was commuting, she was managing to juggle a job and look after my two brothers and look after me an hour away from home, and still be there most of the time, and go through that. If one of your children goes through a life changing accident and she'd been through a divorce maybe a few years earlier and was with a different partner and that sort of didn't really go anywhere, and then she met somebody else who was, they never married but she was with him for over 20 years and he's just died recently as well. So I think of my mum and she's lost both of her parents, her husband that she was married to has, you know, the father of her children has died, the person, her life partner has died, she now lives on her own. I sort of think about that and I think through that period of time the, my mum's, was very selfless in what she did. We never, we didn't know that we didn't want for stuff even though we probably wanted for stuff, so we lived in a house without wallpaper, or we went on camping holidays and we would go for our summer holiday would be half an hour away but we didn't know any of this was different or weird even though all of our friends were setting off and jetting off all over the place and lived in nicer houses and all that sort of stuff. My mum had worked in, volunteered and ran charity shops while she was with my dad and ran little businesses, it's protecting us from the sort of struggles and strife that my dad was getting into. We sort of, I think of my dad and I think he's a very interesting influence. I sot of adored my dad and it's only as I've become an adult I realise some of the flaws that he had but then I look at him and think well he was 16, he lost both of his parents in the same year, so he was orphaned at 16 and he had, he was youngest of five so he was kind of left to fend for himself so he didn't have any kind of sense of what was going on or that sort of stuff. So he kind of drifted from job to job and, you know would have maybe get a bit in trouble and would have to leave and my mum would protect him and have to do something here and there and then, just from not being able to. They separated and then as I say my mum went to university and became successful in her own right and is still working now and she's going to be 70 next year and so is still up and down the country, seeing her sons now are spread across the country, still trekking about all over the place. So yeah, I think that very much stemmed, there's a lot of strength I think, from that role model from my mum I think. SC: Which brings us to the, you mentioned earlier, the strength or the control you feel that you've got at work and the way that's very important to you? SL: I think so yeah. SC: A sense of self esteem, or? SL: I think there is and I think, one of the things we were speaking about is for me, interestingly work is one of the areas where I haven't felt as patronised or looked down or whatever it might be, and I don't know if that's been as I've become more successful, it's status and respect is being delivered by the roles that I've had and things like that. And having to give direction, and having to present at conferences or talk about experiences or that sort of stuff. But when I'm in, outside of work and I'm in a t-shirt and a pair of jeans I'm a person in a wheelchair and that's how people see me. They don't see the career, so it's very interesting how surprised people are when they find out the job that I do. That is, and it's always fascinating that people expect me to either, first of all I think a lot of the time people are surprised that I work, and secondly they're surprised when I explain the job that I do and the title that I've got and the things that I've done and I don't know why, I don't know whether or not people expect me to do other things whatever that might be. But it's interesting that that has, and that outside of work has been the area which has been the biggest challenge in terms of relationships or attitudes that you experience in the street or random things that people shout at you and all that sort of stuff. That's the bigger challenge for me on a daily basis. SC: You mentioned that people trying to help you as being a big frustration? SL: Yeah, so if I go, my wife hates going to Sainsbury's or anywhere like that. She'd rather do an online shop and I prefer going and doing the shops. Sometimes if I go shopping but I don't go up because I cannot get round a supermarket pushing a shopping trolley, which I can do perfectly capably on my own, without 35 seconds probably of being in there someone saying, without 'would you like some help with that? Would you like me to push that trolley for you? Would you like me to get something down from a shelf for you? Would you like some help putting stuff on the conveyor belt? Would you like me to bag these up for you? Would you like me to put these in your car for you?', and it's like, you know, I just cannot be bothered with that on a sort of daily basis. SC: How do you respond to that? SL: So when I'm with my wife she [laughs] she loses it. She's conflicted because she just lets me get on with it, so she's like, people must think I'm really mean that I'm not helping you doing any of that stuff, or I'm not pushing you or any of these things. But then if she's not there, she's in a different, I don't know, in a different aisle and she sees someone, she gets really cross at, on public transport where, you know, she gets frustrated when things that just should work don't work. So I can put my response, I'll come back to that in a second, but my response is, I've just learned it's easier to say 'no thank you' than engage or get cross or whatever, even if that is really frustrating. It's just easier to say, 'no thanks, I'm fine' than it is to engage or to say to people, 'why are you asking?' or if somebody in the supermarket say, pulls a child out of the way saying 'mind that wheelchair' my instinct is to say 'there is a person in this wheelchair, that's not a wheelchair'. And I have said that to someone before and they would say 'well, you know, if someone's about to get run over by a car you wouldn't say 'mind that man in the car' you would say 'mind that car'. And I was like, that, that's not the same, you know it's not the same. For me, because I see my as being an extension of me now, so I, it's weird, I think people come in, come up and chat to me, they'll lean down by the side of me and put their hand on my chair, and for me, I don't like that, it's like someone putting their arm around you when you're having a conversation. It's like it's an extension of me, it's my way of getting about. So that concept of just having to accept the fact that you need, that people are going to assume you need help all the time and then sometimes you're in this conflicted place cause actually when you're out sometimes you do need help and you have to ask for it when you wouldn't want to ask for help and that's annoying as well. [Time: 00:42:55] SC: So um, I think we have talked about quite a lot of experiences what would you say are some of the positive things you experience? As a disabled person though that aren’t the same as somebody who isn’t? SL: Yeah...Uhm...well, that’s, I guess that’s the challenge for me really. I guess I look at the things I have done in my life and I think, would I have done those things, if, uhm, anyway? Or have I have done those things because I have been in my chair? So, you know, and I struggle to think, you know what are the sorts of positives? That’s a much more difficult. I could talk for the next three weeks about the difficulties and the negatives that... SC: We’ll come back to them. SL:...that apply to that. I guess in terms of the positives, you know so I think what I have realised is that I have got quite a small group of friends, and I haven’t got a wide circle, I’ve got a good core group of friends and I have found that the people that I have navigated to are the people that share similar philosophies to me or partners that I’ve had, you know, because they’ve looked past the chair. And I think that has meant that I’ve surrounded myself by people who are positive and have got nice outlooks on life and things like that, which I think has been good. Uhm... I have done maybe more things than maybe I thought I might have done potentially if I look back. I do know plenty of people who have disabilities and sometimes what comes up in the conversation say; ‘Would you, if you could, would you go back and change anything and I know a lot of people who say ‘no’, and I know a lot of people who say, ‘if you could change, if you could, you know, not be in your chair tomorrow, would you do that?’ and they say; ‘No, because I like my life. I like what my life brings me, I like what I do.’ For me, I think, my wife she asked me this question the other week. She said; ‘if you could?’ and I say; ‘in a heartbeat, I would.’ If there was a cure tomorrow I would take it. I would absolutely take it. ...but that’s not to undermine or ignore everything that’s gone before, but I guess I’m sort of tired of just, doing it every day. I think, there is not a day that goes by where I don’t think of my chair. And that, I think I would quite like to put that to one side. But I think, the positive stuff, yeah, I don’t know. It’s led to some quite interesting conversations. It’s sort of lead to some interesting life experiences. Eerm, it, it keeps me fit, I guess. [laughs] It’s like a sort of home gym I guess in the sense that pushing my chair around every day is quite strenuous. So, you know I’ve probably saved on gym memberships and stuff like that. [laughs] And my wife says to me, you know if there is ever a cure can you start going to the gym as I’d be disappointed if you lose your shoulders. [laughs] So... there is that sort of stuff I guess which is interesting. There is little things like, you know, I don’t really queue much anymore. You find that people bring you to the front of the queue. So... SC: So you don’t get cross about hat? SL: You know I don’t get cross about that, no I am very hypocritical when it comes to not having to queue! I am very hypocritical about, you know I go through all my life saying I don’t need help but when you are offered a carer ticket for free, I always take that. Eerm [laughs] and um, I think as bad and hypocritical as that might be, yeah I think, that is true, I sort of, take that and I try not to feel too guilty about that... SC: OK. So let’s talk a bit more about accessibility issues. Because there is a whole range of aspects to that, isn’t here? You’ve covered some of them, you’ve talked a little bit about some of them like work and shops and things like that, what about education for example? What do you think about that? SL: So, yeah, I guess. I had quite a good experience with education I think. My sixth form had been given notice that I was coming and so they, I think used that to their advantage and they made some accessibility changes to there. There was parts of the school I couldn’t get to. But that is something I have kind of just always had to get my head around. There is parts of everywhere I can’t get to. And at university my lecturers just knew, when they were planning the rooms and things so they just put me in the accessible venues, in the accessible lecture theatres and stuff. So I never had, I never had a problem at University in terms of access and in education. I don’t feel as though... I did the degree that I wanted to do in the place that I wanted to do it. It never felt like an issue for me actually I think. University for me was a great period of time because I felt as though, for whatever reason, I don’t know why I don’t know if it was a different kind of confidence that was coming out from me, because I was in my chair and confident. You know, I made really good friends at University, I was quite good academically at what I was doing. And also I was quite popular, in a sort of, I’d had a few sort of girlfriends and things like that. Stuff that I just didn’t think was going to be possible. And that I think, quite quickly was good for my confidence about, oh actually. In that period of time, between about 16 and 21 was when I was probably at my most oblivious to the access problems and perceptions and because I think also at those ages people are quite, more open minded, so I think that was one of the questions that you, that we talked about in advance about how things have changed. Actually I found as I get older things have become more frustrating, because I think people have become more conservative and narrow minded in their views whereas in their early twenties, people don’t really care, so they’d be like, yeah let’s get you in that building. And I didn’t mind being carried into places. I didn’t mind getting carried up a flight of stairs into a nightclub. Or I didn’t mind, I’d be like yeah! Lift me onto the stage! We’ll do whatever! And I didn’t mind any of that. But now I’m like, I’m not getting carried up a flight of stairs it has to be accessible. [Time 00:50:00] SL: So I have become much more militant and righteous about my dignity. And other people have become more nervous around me as they get older, I think, and so I found that my experiences have become more frustrating as I get older. And I am more politically aware that this just shouldn’t be happening. So it’s interesting this label of disability. So, I after, I had made peace with the fact I am considered to have a disability, I don’t consider myself to be disabled. If I had to refer to myself, I would consider myself a wheelchair user, but I have a spinal cord injury. And for me, I think that interesting thing is the word injury, in that I just don’t think that I have ever healed. So, I think that you know, for me, I am still injured in some respects. I don’t have wounds and things like that but my legs don’t work anymore so I have never healed, properly. But I find, I don’t have a disability, but it is society that makes people disabled, its society that’s disabling by having steps into public places, or public transport that you can’t get on, or inaccessible housing, or offices that you can’t get to. Or holidays that you can’t go on, because you get a choice of three rooms in a hotel, and resorts aren’t accessible. All of those things that make it more and more difficult on a day to day basis, and create barriers that you have to overcome on a daily basis that’s what’s disabling. Not the physical condition of an individual. And what I find really interesting is sometimes I find I will be in a meeting at work and one of the things I like to do, is count how many people in the room are wearing glasses. And for me, glasses are like a wheelchair. If people didn’t have those glasses, nobody, I know people will have had things when they were younger and stuff like that, but nobody is looking at those people in that room and thinking ‘well you’ve got a pair of glasses so you can’t come in this building, and you can’t come in this building.’ But my wheelchair is my legs version of a pair of glasses. If you don’t have a pair of glasses you can’t read a book, you know you can’t see the things you want to see, or you get headaches or whatever it might be. If I don’t have my wheelchair I can’t move about. But you know, nobody is saying to all those people, well you have a disability. You know, but their eyes don’t work in the same way that my legs don’t work. For me, that’s really fascinating, you know, it is a really interesting thing to sort of get your head around. SC: So what comes from that is, to what extent and how do you think SL: Sorry, I’ll just unclip my leg... SC: How do you think that’s changed, if at all, since say, you were in your teens. And then I will ask you afterwards, what you think should change. SL: Yeah. So very, disappointingly I don’t think, the attitudes towards people with disabilities has changed that much, I really don’t. And I think, in twenty odd years of being a wheelchair user I don’t see massive progress has been made. You one of the reasons I had to leave London was because half of London, three quarters of London is still inaccessible on public transport. You know, when I get from, when I think about I was in London yesterday, I went from Bristol Temple Meads to Paddington and I went from Paddington to near Old street. So, North West London. And I have to book a train in advance, I have to then book assistance to then get onto the train, I have to turn up half an hour before. I have to sit in a certain part of the train, I have to get carried onto... there’s a ramp that you have to wait for to get there you then sit in the train and are anxious that there is somebody else at the other side with that ramp, to let you get off. I get covered in, nobody respects the, do not put suitcases in this space, so you have to fight for the spaces, there is only two spaces on the train that you can sit on. You then got off, I get to Paddington, you have to get assistance from there, there is no, other than a bus, there is no underground or over ground that enables you to get to where you need to go, so you have to get a taxi and pay for that taxi to get to the other side of London. And, that in itself hasn’t changed. That shouldn’t be something that you have to do. It just shouldn’t be something. And when I got to Bristol yesterday, they’ve actually changed the Great Western trains from, somebody got these new trains. In some respects it is good, because they have put all of the, in some of the newer trains they have put all of the wheelchair spaces in the first class carriage which I guess is, thanks very much for that, um, but to get off the train, there is a slightly lower step now, which means I can jump off the train, I didn’t want to wait for assistance, so I jumped off the train. Then there’s the chap who came down the platform and said ‘oh you got off the train on your own did you?’ and I said yeah, and he said ‘on you’re one of those independent types are you?’ [laughs] ‘And I was like; ‘what do you mean?’ and um, so twenty years on, that hasn’t really changed much for me, trains haven’t changed. I have been to Scandinavia on my travels and I have travelled on my own and I am able to get from the airport in Copenhagen to the hotel in Malmo without any assistance. Because I got to a train, and every fourth carriage was lower so you could push straight onto the train on your own. That’s not that much rocket science. I then got to the train station in Malmo, got off the train, and went to the information desk. The desk was above my eye level. And the desk lowered itself to my eye level, and you think that just shouldn’t be, and you know they just didn’t bat an eyelid. And it’s only, somebody said to me about Scandinavia, they said, at the time it feels like it is inaccessible, and when you come home, you realise how accessible it is, because you haven’t had to think about it, and that’s what it should be. You shouldn’t have to think about planning a journey from A to B. Everything that I do. I am not a natural planner, I have had to become a natural planner. Every single thing that I do needs meticulous planning from what prescription items do I have take on holiday to where do I book assistance, having to book a wheelchair space. To book in, I have to pay for an extra suitcase, to take my stuff onto an aeroplane because of the amount of stuff that I have to take away. I have to pay to go on certain flights. I have to pay more to stay in accessible hotels, everything is more expensive, everything is more difficult to have to do all of that sort of stuff. So I think in attitudes, honestly I don’t think attitudes have changed that much. It’s kind of...you know the example that I mentioned in Bristol, at the train station. That hasn’t changed much, people are still, you know, erm, the people on the train, they very rarely will say to you.... In my experience more often than not, people don’t go out of their way to move their suitcases. You know, they don’t think that there is something odd about putting suitcases in the wheelchair section. They think nothing of that. And that hasn’t changed. I think the attitudes in something like dating, is phenomenally interesting and frustrating at the same time. The amount of people that have said to me, I would have been interested in going out with you if you’d not been in a wheelchair. Or I don’t think that the chair is something that I can cope with. And I have been married twice, and I think, the first time, I look back on that now and I take a lot of responsibility for how difficult I was but I think it was a difficult time, because it was a difficult time, because, you know your restrictions and attitudes of society, somebody else takes that on. So they, might be open minded, then think ‘I like this person, this person is nice, I don’t see a problem with the chair’ they cannot understand how the rest of society thinks like that. And that becomes difficult for them and that creates a wedge, I have had a number of relationships that have ended for those reasons. Or relationships that haven’t started, for those reasons, because of what friends have said to them and things like that. So, that hasn’t changed in my time of being there, and I actually think as I get older, um, and sometimes I think it gets worse. SC: So you don’t think that, you know for example, you know, as a hypothesis, that younger people have got a more open attitude to people who are different? Or disabled people? SL: ... I think one of the things, one of the fascinating things at the moment is that we, we are going through a really interesting period of time, you know with the #metoo movement and with the reaction to people changing political office and creating um, great movements for gender equality and things like that, and racial equality. And for me, I look at that and I think that’s fantastic, and I also look at it through the prism of my experience. And my wife, set up the Bristol Women’s march last year. And she set it up on the Wednesday and on the Saturday 2000 people took to the streets to march for gender equality. And I said to her, I am very grateful she didn’t punch me in the face when I said this to her, but I said, if I’d done that, I said I was very jealous because if I had set up a march for disability equality on a Wednesday about 8 people would have turned up on the Saturday. It wouldn’t, I don’t think you would have had that 2000 people taking to the streets. SC: Why is that? SL: I don’t think it is, either it is something that people don’t talk about or people that understand, you know, I think there is more of an awareness. If you look at, say in the film industry or on television, it is, you cannot imagine now a scenario where somebody, in a film where a white person would now play somebody of a different ethnic minority. Whereas in the 20s you might have had that. But somebody who is able-bodied, who plays a person with a disability more often than not wins an Oscar for it. So you haven’t got people with disabilities in those roles, playing those roles. And it’s lauded, they are lauded for their ability to almost, become that disabled character, to get themselves into that mindset. There is not a raft of role models for me that I see in the public eye, of television presenters or people in film or... I don’t see in, when I go to the cinema, I don’t see people, that there is a family, that is a normal film about somebody, there is no reason why the dad or the mum or the son in that film could be a wheelchair user. Or blind, or, visually impaired, or have a hearing impairment. And it not be mentioned, it just be normal. There is no reason for that not to exist, and I see that sort of stuff, I think is really good, so there isn’t that positive affirmation that people with disabilities are just living normal lives. SC: Explain how that stops the kind of mobilisation of activism among people who might want changes to happen? [time 1:01:59] SL: I think one of the reasons is, because the spectrum, the label of something called disability, is so wide-ranging that actually it is difficult for people to know where to start, I think people still really don’t understand the difference between how somebody who can be called disabled that might be somebody with an invisible disability, maybe somebody in a wheelchair. But maybe not everyone in a wheelchair. Some people in wheelchairs can get up and walk. And some people in wheelchairs might be there because of spinal cord injuries, or because of disease, or because they born with that, or an amputee. The range of people in that scenarios is vast. ...That is one thing that contributes to it, And I think, partly, it is more difficult for people with disabilities to get out and take to the streets and march, it takes physical effort for many people to leave their house, so for many people they are not able, they are not afforded the luxury of being able to take to the streets, but nobody is taking to the streets for them so for many of us, we are invisible. We are sat in our houses unable to get out, because society restricts us, and in restricting us, it takes away our voice, to be heard in a public setting, if you are on social media now or something like that, you are just one of many voices on there, it’s much more difficult. I If you look at Politics, how many of our senior politicians have known disabilities that they actively talk about, that they campaigning and thinking that is ok? And that is a, sometimes people say, oh I can point to David Blunkett, or this person or that, you’d be struggling to get double figures but you wouldn’t be struggling to get to double figures of influential female politicians or politicians from ethnic minorities and they are still struggling, and they have still got that fight. There is still masses to go before we have gender or racial equality. SC: So, what about your involvement in politics? SL: Well, I kind of approach this from two ways, I think maybe that is something I would be interested in, but actually political activism isn’t something that necessarily I want to do, what I want to do, is kind of tell my story. I try and tell my story, if I can change some perceptions based on my experiences, that is what I can do. I don’t want to do it in the way that... they very nature of these questions has meant it sounded a bit more negative, but I don’t want to do it in a way that is negative, I like to do things much more factually. One of the things we mentioned in advance of this, is the poetry that I write, I said to my wife after the march, that I’ve been writing poetry for maybe 5 or so years, but mainly I started writing because I couldn’t get my... I had lots of things I couldn’t understand, and so I was just committing things to paper. And then those things started to turn more into a bit like diary entries, and then there were some thoughts in there that turned more into, I thought maybe there is a bit of poetry in there, and then I was writing to try and be creative and think about things differently and look at things from different perspectives, and the poetry has enabled me to really delve into some of my psyche about what I think about things and how I approach things and how other people approach things and what that means to me and it is not be any means phenomenal, world class poetry. And actually I quite like that, it is one of the few things I haven’t continued to... it is not something I want to become competitive at, but it is something I want to get better at. I actually have sort of, taken on a mentor or I have gone to classes and workshops to try and understand and I have read much more, you know I came to poetry very late in life, probably in my mid-thirties and I hadn’t read much before that, I hadn’t studied it really at school. So I am coming from quite a empty bank of knowledge in this area which I am trying to catch up in. But the more I am learning, and the more.. it is enabling me think an about things differently and think about myself. Actually my 20th anniversary of my accident; I wanted to write 20 poems about the 20 years of my... since being a wheelchair user, and I shared those family and friends. And on the back of that people said there is something in this maybe, maybe you could develop these a bit more. And so I did, I started to write more, and I became fairly prolific until I had a bank of a hundred or so poems, which have then created this collection, that I have now got, which a publisher has said they would take on. A spark for me was my wife setting up the women’s march last year because as I said, if I set a march up, as I said, 2000 people wouldn’t come. But if I write a book of peotry and put that out, maybe 2000 people might read it. And that is what I have tried to do, in writing the poetry and she has said to me, I am much more laidback, and chilled out, than she has ever known me. Because the catharsis of being able to get this stuff on page and think about things differently and talk about things and maybe make people more aware of... trying to change perceptions and experiences and attitudes, has been quite enlightening for me and it’s made me much more chilled out and much more reflective and probably much more content and happy than I’ve probably I have ever been in any of my adult life I think. So it is quite a nice place to be in some respects. SC: So it’s great, there is a book coming out and obviously you have an audience there, but what other audiences are you reaching with your poetry? [Time 1:08:23] SL: So that is the interesting thing. By tackling this new area, has led to its own frustrations because poetry isn’t a mainstream thing so when I go to poetry readings or I think, I approach someone who does a poetry night, they’re either upstairs in a pub or downstairs in a basement of a pub or in a very small venue. They are all inaccessible. And there aren’t that many spaces that are accessible to get to do poetry. So one of the things that I’ve said about my poetry is that whilst poetry might not be accessible to me, both in terms of physically accessible or it isn’t just something that people I went to school with are reading about you know, it’s not, there are lots of people when they talk about poetry, think about the classics or you know, stale white men that if you go into a Waterstones, that is the stuff that is on the shelves. They are the sort of poetry collections. So whilst poetry might not accessible to me, I want to make my poetry accessible to as many people as possible. Either in the way that I write about disability or my experiences, or in the fact that I might put stuff on social media or youtube makes things very accessible, but it is also opening a world to me of disabled poets that I didn’t know existed. And actually it has created this environment where people have got these same frustrations, uhm, and are writing very similarly, they are writing about their own experiences, but their poetry is very different to mine. And that is what is fantastic is, these quite similar experiences are leading, and it is really, you, what I have loved about this, is that it changed a lot of my perceptions,. It has changed my perceptions about what a disability is. Sometimes I think ‘Yeah I’ve got the disability that makes it harder than anyone else you know I am wheelchair and this that and the other,’ and actually some people have a disability that is debilitating and means I cannot leave my bedroom. But on the outside I don’t look any different to anyone else and so nobody, everyone thinks I am just putting it on, or you this that and the other, So for me, that has what it means to be a disabled poet is quite interesting, and when I first went to into it, I didn’t think I wanted to be someone who only wrote about their experiences, but actually I am finding if that is the only thing I write about that is absolutely fine, I am happy with that yeah. SC: So the poetry in a way it is a form of Political activism? SL: In a way, I guess, yeah. SC: Sideways SL: Yeah, in a guess, I guess it is. But I don’t want it to be ranty or angry. I don’t want it to be, because I think that’s what puts a lot of... and it is absolutely understandable that... the more restricted you are, the more frustrated you get, the more that will come out as pent up frustration and anger and I think there is a perceptions that people with disabilities who are political activists or are angry, well of course they are angry. And I think that also puts people off sometimes, because we are not seen public having a mainstream, rational, conversation because those doors haven’t been open to us to have that. One of the things I will say is that the it would be really good to talk about the Paralympics and the legacy on say, Channel 4 and the ‘Last Leg’ that’s on a Friday night. The Last Leg has been a phenomenal programme in the sense that two of those presenters have disabilities and they encourage that, and they champion that, and they talk about that in a way that is quite funny. That has a phenomenal following of everybody, and that’s been really terrific and that is one of the few legacies that really, truly came out of the 2012 Paralympics games. And I found that both living in London at the time of 2012 I found the Paralympics both a wonderful and massively crushingly disappointing experience at the same time. Wonderful in the sense that, for a period of time, I wasn’t the invisible person on the street. People were more aware. Overnight, someone went down onto the underground in London and lobbed a load of tarmac on the underground to raise some of the platforms to make it easier to get in the train, and I thought why haven’t you done that everywhere? And why are you only doing this because of the Paralympics games? More venues became accessible. They built a load of new sporting venues, which had massively improved accessibility and there were many more people that, not only looked like me but didn’t look like me but had disabilities On the streets and at that these venues. And it was a much more representative version of what our society looks like, out and about on the streets and nobody would have pointed or batted an eyelid as they were going towards the par and to be in a stadium, watching 60,000 people cheer on a group of people in wheelchairs doing a sport and see that enthusiasm and that energy was incredibly emotional. And I lived in Greenwich at the time, on the Greenwich peninsular by the O2 and my local pub which was called ‘The Pilot’, changed its name to ‘The Wheelchair Basket-baller’ for two weeks and I remember going into that pub and looking around and thinking ‘I am the majority! I don’t understand.’ They had taken all the pictures down off the walls and they had put up pictures of people in wheelchairs on the walls. Most of the people in there were Paralympians or people with disabilities. And they had ramped the front door. They took the ramp away after the Paralympics. I sat in there thinking, this is incredible. This is what a majority must look like. And I then went to the O2 and I watched the game of wheelchair basketball, which I had played for ten years when I was in the North. And so 16,000 people cheering on people that I’d played wheelchair basketball with when I was a junior. I had played to an alright standard of wheelchair basketball. I played in like the national junior championships and was in a team for the North West that had won the national championships and I’d been called up to a junior Great Britain training squads and things like that to see if I could be.... I had made the decision when I was younger, I could have either gone and played sport full time but not earned much money or gone and had a career and gone to university, and I chose the career rather than doing sport full time. But people who had done that were now there winning gold medals and that was phenomenal. And then, within about a week, it was all back to normal. So that legacy, those attitudes didn’t change, I was almost like; the people that were cheering, I was like where were you yesterday when people were giving me grief on the underground? And then a week later, it was what’s happened to you from in a week’s time to go back to, because we didn’t keep it going, we didn’t... the Paralympic legacy shouldn’t have just been about making sport more accessible to people. Our news presenters should have, there should be more news presenters, there should be more people presenting Saturday night television, more people who are politicians. It should have opened all doors. It should have meant that I don’t have to chose a hairdressers based on which one I can get into. Or a restaurant based on which restaurant hasn’t got a step to the front of it, the thing disability discrimination act and access to public buildings is nonsense and if you look at somewhere like Bristol, is one of the most inaccessible cities I have ever been to. And I moved to Bristol because; one for the job and two because people said it’s this, liberal, forward-thinking city, where it’s got phenomenal culture and amazing art venues and wonderful access to... the ways of thinking and this that and the other, and it may well have. But I can’t find it because I can’t get into any of it. And, trying to rent an accessible property in Bristol first and foremost was one the hardest things, the amount of people when you say I am moving to Bristol people say you should move to Clifton. Clifton? Not a chance, there are no accessible houses in Clifton! I pay now, to rent a flat more than I did do in London because of the lack of accessible properties that there were in Bristol, because I didn’t want to live in somewhere on the outskirts, I wanted to live somewhere that was still close and trendy or wherever it might be. I wanted to live in a nice flat. But I have had to pay for that right to live in a nice flat that was accessible. And all if there are so many music venues in Bristol that are inaccessible. There are so many arts venues that are inaccessible. There are some great arts venues so the M shed, the Arnolfini, The Watershed, they are all within about 50m radius of each other. That’s it! You look at some of the museums I guess are, but it’s a hilly city. The public transport is terrible, and they are all things I know other people have got issues with, but it is a very, very inaccessible, close-minded city, I think to disability. And I do not see people with disabilities out and about on the streets of Bristol, and there has to be a reason for that. And actually the more I have chatted to people, there are plenty of people in Bristol but for whatever reason they do not feel comfortable to get out and about and benefit from this city and I think it is a massive shame, I think it’s a huge oversight and actually its pretty disgraceful really that it is, that is had that kind of close mind to that kind of approach. [Time 1:18:48] SC: Is that because it is a close mind... but also is it the funding aspect and the legislation aspect? You touched on disability acts and you know, the kind of lip-service paid to accessibility of buildings etc and do you feel that we need further legislation? More funding? SL: Well... I think... there must be. I don’t know enough about it to say yes or no. But I think there must be a reason why a shop will not put a ramp up to its front door, and that reason must be cost. It must be. It can’t be because they don’t think, if you said to a shop owner and you showed them a picture of me in my chair, and said, ‘Would you like this person’s money? They would say, ‘oh yes please!’ if it is a clothes shop or a hairdressers it’s; ‘Would you refuse to cut this person’s hair?’ And they would say, ‘no why would I?’ Well you don’t have a ramp into your shop. Yeah cause that ramp might cost me a thousand pounds and that I might get one person in a wheelchair who comes into my... so maybe there is that way of thinking perhaps. Because there is a legal requirement for people to do it but what isn’t happening is, it’s not like, you don’t have parking attendants. If somebody parks their car on a pair of double yellow lines then within about fifteen minutes there is twenty five parking attendants fighting over themselves to stick a parking ticket on that. There is not a step attendant wandering around Bristol fining people for not having buildings that are accessible, and so I don’t know what it is. A lot of people hide behind; ‘Oh it is an old building and it is difficult to do.’ But the Arts house in Bristol has just been through a massive refurbishment and their venue, I contacted them and said, all of your poetry events are downstairs, are you thinking of putting a lift in? They said no sorry we can’t do that. They didn’t even then come back and say but we might put our events upstairs, they just went; no they are still upstairs. I am sorry you can’t come. What I have found about Bristol is that people are at least quite apologetic and they think, oh well it is bad but we are just not able to do it for whatever reason. So they are quite apologetic but then they make a lot of excuses. There must be maybe it’s funding, maybe it... the penalties for not doing stuff should be there but then equally that doesn’t help change the perceptions as that doesn’t change the perceptions of people being a burden, because if you penalise people, that is coming from a negative place. So that’s not what I would want to happen. So if we said something like you had to put a ramp in or we’ll fine you a thousand pounds they are not doing that then for any positive reason, they are doing it for the punitive reasons that they are going to get in trouble for. It doesn’t make it a positive experience for the people going into the shop. SC: And that brings you back to awareness, getting it out there and normalisation. And just acceptance. SL: Exactly. A normalisation of acceptance is exactly what is comes back to I think. Yeah well I think the big label that I would want to sort of ultimately see is normal. That’s the thing. I crave normal. That is what I want. When I was hospital... and rightly so, there is people that get sent chat to you to kind of say ‘This will be alright.’ And they were people who had done, the people I saw, were the people who climbed mountains or paralympians or people in the public eye. And I think if you broke your leg and you like going for a run on a Sunday afternoon and maybe doing 3k you wouldn’t get sent Usain Bolt to give you a pep talk, say ‘come on if you get your leg better you can run the 100 meters in nine seconds. It just wouldn’t happen. What I wanted was people who... I wanted to be put in touch with role models who... had jobs, had got married, had children, maybe got divorced, cause all that sort of stuff is normal stuff. And actually everything that I have gone on to do. There are charities out there and I think doing some fantastic stuff. That is one of the things I’ve see more of is that some of the charities that are really fighting for air space in what is quite a crowded voluntary sector and doing phenomenal stuff. There’s more maybe housing advocate associations, purely designed to make housing accessible. They are not the big charities and they are fighting for funding in the same way that everybody else is. And I think a lot of it, I think, I do not feel at this moment in time that we have a government that looks fondly on people with disabilities. So interestingly on Theresa May’s first speech that she gave she talked about wanting to be a fairer society she name checked she said that all older people, younger people, black people, white people, gay people, straight people, people in work, people out of work privileged people, non-privileged people, didn’t mention disabilities, and I thought wow! That’s... the things that they are trying to do with the bedroom taxes or, the disability living allowance, or cutting funding for certain areas, or accessible, is nothing short... it’s a National disgrace. And it is one that nobody seems to want to talk about, it is really interesting that this is not a, we do not have a government that I feel is fighting for the underrepresented people of this country, that are silent for whatever reason they are not able to get out here, who don’t have a voice and that I think is really difficult. I think it must be really hard for people to see that, to live in a country where you think, I’m not really wanted here. And I don’t feel as though that has progressed at all in the time that I have... I feel as if there was a period of time, maybe in the late 90’s early 2000’s where things felt a bit more progressive and open but I don’t feel the same now. [Time 1:25:27] SC: I wonder if Brexit will have an effect as well? SL: Maybe, yeah, maybe. I think you know, it’ll either mean, you know we create more funding, that we’re forced to do stuff like that or it will mean finding will go elsewhere, I really don’t know. And I feel as though, it’s a shame because I look at many European cities I have been to, far more accessible than you know, our cities here I think, far more accessible and just without thinking about it, there is just stuff that they have done. And you know I go to places like Thailand and China, you know the effort that they make in some areas are far more.... and you come back and you think it just shouldn’t be like that. SC: You mentioned Scandinavia? SL: Yeah Scandinavia is incredible. Yeah... some of the access stuff in America is great. But Scandinavia... SC: And the Middle East? SL: Yeah, yeah, the part of the Middle East... Doha is an interesting one because... when I went to Doha I struggled because the attitudes towards, you know... people would have conversations about me, with me there. You know, lots of talking over me and things like that, however they have invested in things like the airport is staggering in terms of the accessibility of the airport in Doha but I am not sure, I don’t know how much of it is done because there is an element of wanting to be seen to be doing the right things. But culturally whether or not that had changed. SC: It hasn’t caught up? SL: Yeah. You need the two things to go hand in hand. You need the investment but you want the cultural drive to do it. But culture changes over a long time, you can’t change culture over night. Cultural values and cultural attitudes, it takes maybe, again if you were thinking of some of the gender thing. Look at the fight there has been in terms of gender equality.. it’s hundreds of years old, and you know we are probably in a period of time where have had the most gender equality we have ever had and yet we are shining a light on where it is still masses to go, and I would say in maybe accessibility terms, we are maybe fifty sixty years behind that. So it... I don’t see in my lifetime ever being in a position where it is you know... normalised to the point that we can all exist in the society and no one looks any different. SC: Do you think maybe in one hundred years time things will have changed? [Time 1:27:59] SL: I would like to think so, but it will, I would like for instance to see in a hundred years time if films still exist and we’re not having things implanted in our brains like clicking a pair of glasses or whatever it might be. I might watch a film and someone who looks like me is in that film just because they were the best person for that part. Or if they decide to make another film about the later years of Stephen Hawkins that somebody with motor neuron disease plays that character. Or you know, that sort of stuff, I think. And that’s not hard to do, that isn’t difficult. It is not difficult for the BBC to hire presenters with disabilities because they’re charismatic and can interview people. You don’t need to walk to ask someone some questions. You don’t need to walk to be able to analyse a football match or present a game of football. I know enough about football to be able to say ‘what do you think?’ it is not [laughs] hard! I would like to think we are not that far away from that sort of stuff happening. Making buildings and transport accessible, I think we are a long way from, but that doesn’t need to be difficult, I think. There is no reason other than funding, why that stuff... SC: ...And commitment... SL: Yeah and commitment and a desire to want to do that I think yeah. And I sometimes wonder if it is because, its ten million people in London, how many of those people have got disabilities, and so the infrastructure that is required just makes things very unreliable. The amount of grief I got when I was in London and people would say, ‘Oh is this shut because of you is it?’ Not because of me! Because they’ve been doing building work to put a ramp in the underground or to take a lift out of action, or to add a lift, oh... and you feel like, I am not responsible for this! I have got as much right to be on this underground as you have! Yeah it is fascinating, yeah. Okay.... hopefully you have got everything you need of in terms of... [1:30:23] SC: Yeah. So there was that thing, in summary that thing about work contrasted with the rest of life. SL: Yeah so the thing that I find really interesting that I find in work, that is in an area that is in employment where, I can only talk about my own personal experiences but I found that that in my personal experience I found that my employers have been more amenable to making the changes that they have to create a better working environment for me. And so, that hasn’t, when I finish work and I go home and then want to exist in a society that doesn’t feel as though that applies to people wanting me to be an active part of that society. And what’s really frustrating is you go to work, you make your contribution to society. You do the things you need to do, you help the country tick along you play your part and you pay your taxes and you don’t get the payoff when you go home, because you can’t then go and enjoy the theatre like everybody else and you’ve got three seats that you can choose from when you want to go to a venue rather than three hundred seats. And it’s the same in a football match. In sporting venues all the people in wheelchairs tend to sit together. And sometimes I find that you sit with the home and the away fans because you are in the wheelchair enclosure. No, I want to be in the Blackburn Rovers enclosure! Which is the team that I support. Things are still lagging behind in that area, where the difference between work and non-work is huge and that is the thing where I find the biggest frustrations. SC: Yeah so just talking about social life. SL: Yeah I was talking about dating and one of the things that is really interesting around dating, about, you know one of the things that has become more... interesting is, the growth of online dating which becomes much more normalised and that is an avenue that I guess I have explored and I met my wife through online dating. In fact I have been married twice and I met both my wives through online dating. And when I first started that, I didn’t put a photograph of me on, in my wheelchair and then I would find that you would get interest in your pictures and your chat and then I would have to say, oh and by the way... and then the emails would stop, or you would eliminate... Then I took the decision to make sure there was a picture of me in my chair on my dating profile. Knowing that that would eliminate a significant number of people. I talked to friends of mine who were also online dating and they said, they would be inundated with emails or people trying to get in touch.. all with similar interest to me and I would say don’t look that different to me from head and shoulders photograph. But they were inundated but not necessarily going on that many dates. And I found actually I wasn’t approached that much but I maybe was going on enough dates for it to be interesting. I had narrowed down a whole selection criteria that if you are prepared to go on a date with me that you are quite open minded about things. And, sometimes you... you turn up and they are the only things that people would talk to you about. And I have been on dates and people say, you’ve got a lot of baggage and I’m was like, well I haven’t... It is one of those things wherever ... if say you have mental problems or you have depression, you can walk down the street and that is not necessarily known. And you can go to a date and you might want to talk about that and not until maybe date two, three, four, or five. I am straight in your face. So, when I turn up it’s like there you go, and what happened to you and how did this happen? You are straight into that, you are not talking about your favourite films, you are talking about, well I had an accident and it’s quite deep, heavy stuff straight off, and I think it’s quite interesting but then I found that quite a lot of my dates have moved to people I have been become quite good friends with because sort of the physical side, attraction of things are moved to one side because people create that kind of, oh, you are an interesting person or you have been through a lot of adversity. And that might not be how you want to start a first date off and sort of a relationship. Whereas actually my wife now, is incredible in the sense that she forgets on a daily basis, she is completely oblivious to it. She’ll go to a venue and she booked this table and we’ll turn up and we’ll realise we can’t get in and she’s like, ‘oh I forgot to ask’ and I’m like ‘that’s alright because you forgot to ask, that’s great.’ And I’ll get into bed at night and she’s up later than I am and the lights are turned off and every single night she walks in and walks into my chair. And she is covered in bruises on her legs. Because she forgets every night that that’s there. Or will you know, be sat in the car and my chair’s in the boot and we’ll pull up to home and I’ll be sat there and she’s looking at me going, ‘Oh I’ll wait for you then will I? And I’m like well actually I am waiting for you to get out and get my chair. And she’s like, ‘Oh yeah I need to get your chair!’ And that’s fantastic because she sees beyond that and for it is never an issue and it leads her to be much more frustrated and angry on my behalf than I am. And the other thing I think about dating that is really, really interesting is that quite quickly relationships cannot start or you can start to find that you’ve got an interest with people, and the disability gets in the way. Not because I am disabled but because they are trying to get their head around stuff, that maybe I‘ve had twenty years to get my head around, so you know, the questions that... sometimes I’ll have been seeing someone and at the very early stage of a relationship and I’ll meet them, you know, you are not living together so you meet up for a date and they are very quiet and withdrawn and you’ll unpick it and they’ll say I’m fine, I’m fine and then they’ll tell you and they’ll say my friends came round and they are interested in my new partner and I was saying this that and the other and they were like, ‘oh how do you have sex? And how do you this and how do you do that?’ and she was like ‘I would never ask those questions! You know, I don’t why is that something that...’ the curiosity of people, what’s it like, do you have to help him into bed and is he able to do this and does he have a job? And she’s like, so then it really becomes, it really impacts people and they get really upset, they think why do you have to go through this on a daily basis? And sometimes it becomes too much for people and that is absolutely fine, as I say I have had twenty years... to find, and then sometimes they don’t understand why I am not more empathetic and I’m like well I’ve had twenty years of dealing with this, that’s ruined relationships, because I’m not empathetic towards their understanding or their emotional distress, or their upset on my behalf. Or I’ll say, why do you get angry all the time, you don’t need to be angry? Can’t you just be more like me and then I think well actually I am used to this and this is my normal, and this is my way of dealing with it. It doesn’t have to be your way of dealing with it. And again in terms of, for me, I always wanted children, but I don’t at the moment and I have also found that, for me to have children I would need to have IVF, and in some respects I need to find somebody who, I think almost wants children more than I do, and I haven’t necessarily found that, so again, and my current partner, she would like... I don’t want people to have children in order to give me a child to keep me happy. I don’t think that’s what it should be about. So very fascinating. And also you can choose your partner but you don’t choose their family so also their family then ask questions and make it difficult and they might move in with you might choose an accessible house, and it doesn’t mean their brother’s house is accessible or their mum’s house is accessible is, or their aunts is, or their uncles. Or that wedding, that the third cousin that you have never seen before, so you were always having to say, oh yeah we might be able to come to your wedding, can you check if the church is accessible or can you check if this is accessible, or I’m sorry dad we can’t come to see you on Christmas day, because your house is not accessible, Oh I will build a ramp, I say Oh I don’t need you to build a ramp. And we can’t go on this family holiday and all this sort of stuff and becomes very, people can feel quite detached from their family that they want to bring you into, but actually feels quite on the outskirts of. It is very, very interesting yeah. Very interesting. And I sometimes sort of see that on the other side. My wife is... mixed race and she has very similar sort of experiences, it is quite interesting then, we both sort of share these different parallels. For me I don’t see... she every day, doesn’t see my chair and I don’t see the colour of her skin and yet other people and I can’t understand why then sometimes people think it is weird and this that and the other, maybe that has helped us in terms of our understanding a little bit of ...whatever and who knows. But it is fascinating in terms of... One of the things people say... I have heard other people, not just to just to me or other people in the public eye, ‘He’s quite dishy for someone in a wheelchair!’ What does that mean? I never thought I would date someone in a wheelchair. Great, I never thought I would date a conservative! It’s the same sort of thing I guess. Very interesting. SC: It’s fascinating SL: So these are three poems that I am going to read, and the first one is: Unwelcome home. Summer is here Suntans have long since replaced scarves At last, I am home. I’d left half a year earlier on a snowy Saturday Reluctantly wrapped in layers of wool. With an almost prophetic warning, Mum had heated my ears about catching a death. I am no longer in a coat, now a wheelchair It is as I remember and yet everything has changed Almost like I have come through the wrong front door Set at my old height, even the mirrors disdainfully snub my existence Mirror mirror on the wall, why have I been ostracised from the daily changing family portrait in the reflected glass? Mum, brother, brother, only air where once were my eyes This was where I checked my school tie The knot in my stomach tightens now with a loss I cannot yet articulate. It’s not just the mirrors that highlight the shame I can’t see. The step under the letterbox through which cold comfort condolence cards are fed Is adorned with an unwelcome matt just for me. A dignity eroding commode sits uncomfortably in the living room. Everything else at reach but the kitchen sink. What does it mean to call something a home? Whatever this was, it no longer feels the way it once did. I am now a stranger. My family, rocked by tragedy try to live as normal. While I, ghost in the wheelchair am unfamiliar in a once familiar place. This second poem is called Disabled. This is how it feels. Disarmed, degraded and dehumanised Ignored and passed over The second class citizens in a first class world Alone, even though I am the one every eye sees in a crowd Babysat and patronised without knowledge of my name Lowest down the pecking order when in the queue for equality Exfoliated from streets not made for my wheels And determined to prove my worth. And this third poem is called White. Duplicitous white snow turns crimson beneath me, A bloody outline seeping its way around my stricken frame Marking the dying body of the person I used to be. An avalanche of activity in the time it takes for winter’s breath to form and disappear. Through cries that climb through barren brown branches The single question thaws in my sixteen year old mind; What happens next? I rouse to the sound of sirens. It is the last day of the tour de France and the Jean-Marie are clearing the Champs de Elysee. We are in Paris, on our honeymoon. You are facing me and for the second time in two days dressed in white again, Only now wrapped in hotel sheets, confetti still in your hair, champagne still on your lips. The corners of my mouth stretch for the grey at my temples Drunk on euphoria, I answer a twenty year old question, We happen next..