Disability

Full transcript of 'Nothing feels real a third of the time' - Ouch Talk Show December 2017

This is full transcript of the December 2017 Ouch Talk Show, 'Nothing feels real a third of the time', as presented by Kate Monaghan and Simon Minty.

It features Chris Young who is walking around the UK to raise awareness of borderline personality, young stoke survivors Becki Cobb and Simon Commins who met by chance and fell in love and US disability rights advocate Lawrence Carter-Long.

SIMON - Hello, it's Ouch from the BBC, a monthly talk show where people without a disability are the exception. I'm Simon Minty.

KATE - And I'm Kate Monaghan. On the show this month we've got a man who says he's away with the fairies a third of the time, a pair of star crossed stroke survivors, and social news from sunny California.

SIMON - Kate and I are on the Ouch podcast feed in the first week of every month, but on the weeks we're not here Ouch brings you other podcasts. Currently we're doing Ouch takeovers where our feed gets hijacked by specific groups. In December it's a mental health takeover, then there's Robyn, Jamie and the Lion Show which grew out of an autistic takeover, and there will be an extended interview with blind comedian, Chris McCausland, before his appearance on 'Live at the Apollo'.

KATE - I can't wait to watch that, can you?

SIMON - It should be cool.

KATE - Yes. So if you're streaming us via the BBC website right now don't miss out, subscribe to BBC Ouch on Apple podcasts or wherever you get your podcasts from.

SIMON - So what's been happening with you this month, Kate?

KATE - Oh, a big month this month, Simon.

SIMON - Go on?

KATE - I've moved house.

SIMON - To?

KATE - Up to the north of the country from London.

SIMON - Okay, how was the move?

KATE - The move was as horrible as you could imagine a move could be.

SIMON - But it's horrible for everyone.

KATE - It really is, yes.

SIMON - How about you, being Special Kate?

KATE - Well, Special Kate, it was really horrible…

SIMON - [laughs] You're rubbing your temples.

KATE - Even just the thought of it. Like everything in life, things are harder with a disability. You know, everything's harder, but moving is really hard because you can't do the physical stuff that you need to do. And it's so frustrating that even when you throw money at the problem, which we ended up having to do even without having the money to do it, we still had to pay for people to pack.

SIMON - Pack up, yeah.

KATE - And move everything and then unload all the boxes, because obviously my wife, Holly, she is also disabled so neither of us…

SIMON - You've got a youngster as well.

KATE - And we've got a baby, who was poorly at the same time, so when you move house, like I just wanted to get everything done, and you're just sitting there and thinking I physically can't move the boxes where I need to move them, I can't... Oh, nightmare.

SIMON - So you're looking, and just frustrated.

KATE - Yes, just really frustrated. No, we moved from a one and a half bedroom flat to a big house.

SIMON - And you've got space?

KATE - Yes, so we've got space for my little one. But for the first time in a long time I've got a house with stairs.

SIMON - But yes, I was going to say. And also, although it was small, it worked for you?

KATE - Yes, everything was where it needed to be, the distance from the kitchen to the bedroom for example, was easy. Now I have to make a decision in my head, like how much do I want to go downstairs to get a drink? Because I'd have to walk down the stairs and walk back up the stairs and it's like, do I care enough about that drink to make that descent and ascent?

SIMON - But is hide and seek more fun?

KATE - Hide and seek is loads more fun.

SIMON - And travel? Have you got yourself a Disabled Persons Railcard?

KATE - Of course.

MARVEL- Oh okay, so you're saving money on your journeys.

KATE - Yeah. It's good but, you know, I think the government should help you a bit more if you're a disabled person moving house. I feel like you should have a disabled person's house moving card, that should become a thing.

SIMON - Okay. I think you should campaign on that and I'm sure you're going to get a lot of votes.

KATE - Okay, I'll raise it with… George Osborne? No, Philip Hammond. Whoever's the Chancellor of the Exchequer at the moment.

SIMON - We have a new minister as well. But come on, we've got guests here.

KATE - We do. Let's meet our guests. Hello, Becki Cobb and Simon Commins. How are you doing?

SIMON C - Hi.

BECKI - Good, thanks.

KATE - Good. Now, Becki and her boyfriend Simon both had strokes at a young age, but they didn't know each other back then. Now they've been a couple for nearly five years now, is that right?

SIMON C - Yes, five years. Five long years.

SIMON - Good answer, Simon.

BECKI - That's not true…

SIMON - You started off well and then you… [laughs]

BECKI - It'll be five years in March.

KATE - And while Becki has physical difficulties due to the stroke, Simon was left with cognitive and memory problems. So do you feel like you even each other out? One with the physical, one with the more mental things?

SIMON - Oh, and household. If you moved house would you distribute different jobs?

BECKI - Simon would do a lot of the heavy lifting, the directing and the painting… decorating is the word I was looking for. I would probably do more of the paperwork side of things, the bills. I mean that is what happens at the moment isn't it?

SIMON C - That is what happens, yes.

KATE - Do you think you've got quite a good balance then?

SIMON C - I'd say so.

BECKI - I think so. I think I would like to be able to do more physical things obviously, but I have to sacrifice that to make sure that I can do everything else I guess.

SIMON - Do you want to do more admin, Simon?

SIMON C - No, I'm quite happy as it is, yes. [laughter]

SIMON - Keep playing that one. Simon and Becki will stay with us and we'll be hearing their full story towards the end of the show. Now, hello to Lawrence Carter-Long from down the line in California.

LAWRENCE - Hello.

SIMON - Well Lawrence, you've been a friend of the show since we started in 2005, and in those 12 years you've talked to us about everything, from beer, films, politics, and another favourite subject is language. And you don't like how people shy away from using the word, disabled, in favour of words like challenged, or special needs. And you're currently engaging people to use the hashtag, say the word disability. This is all over online. How is that campaign going?

LAWRENCE - It's going very well, it sort of took on a life of its own. I first wrote about it in a fit of rage just because President Obama had talked about all the identity groups that the Whitehouse could mention, but disability wasn't included. And it got me thinking about why weren't we there with Latinos and the LGBT community and senior citizens etc, and thinking about a simple way that we could get disability in the mix with those other groups.

And so part of the effort is to just simplify things, you know, when you say, physically challenged or differently abled or special needs, nobody knows what the heck that really means. And so part of the goal was just to simplify things so that we'd all be on the same page.

KATE- Well Lawrence, we'll come back to that, quite big, debate I think…

SIMON - Properly.

KATE - …properly, shortly. But we will keep your microphone up so that you can join in before then of course, because I know, Lawrence, you like to chip in on things, don't you?

LAWRENCE - Oh, as much as I can.

KATE - Of course. But for now, let's turn all our attentions to Chris Young. Hello, Chris.

CHRIS - Yes hi, how are you doing?

KATE - I'm well. How are you?

CHRIS - I'm splendid.

KATE - Excellent.

SIMON - So Chris was a social worker and a life coach until 2008 when a decline in his mental health led to a diagnosis of borderline personality disorder. In 2011, following three years of treatment, he set off on a journey around the outer edge of the UK with nothing but a tent, some Super Noodles and a plan to raise mental health awareness. His autobiography, 'Walk a Mile: Tales of a Wandering Loon' is out now.

KATE - Now, we'll come back to the walk in a minute, especially the decision to take Super Noodles with you which…

CHRIS - Carbohydrates.

KATE - Yeah, yeah, yeah. It probably wouldn't have been my first choice but, you know, each to their own. But because this walk you were doing was all about awareness raising I went Googling for a definition of borderline personality disorder. Chris has given us quite a look at the Googling, but I guess like most things I found that borderline personality disorder is different for everyone. But I like this explanation from somebody on the Mind website who said, "It's like the emotional version of being a burn victim. Everything in the world hurts more than it seems to for everybody else, and any thick skin you're supposed to have just isn't there." Does it mean you are on the borderline of having a problem or is it this massive thing where you're like…? I don't know.

CHRIS - It is singularly the most useless label for anything in the history of mental ill health. The guy who came up with the label, what they'd noticed is that people with your conventional mental health problems, schizophrenia, bipolar disorder, and there was a group of didn't fit into these categories who were continuing to be wilfully mad. And they couldn't quite fit them into that box. So he thought, well they're on the borderline of psychosis and neurosis, neurosis being your depressions and stuff like that and psychosis being people who at times can't quite connect with the reality of the world.

KATE - Borderline personality disorder, it doesn't mean you're on the border of having a personality disorder, it means you've got a personality disorder that's on the borderline between these two worlds?

CHRIS - Yes, but it's a bad description. It's a nice heading.

KATE - But what does it mean for you? Tell me what it means for you.

CHRIS - I think what it means for me is when I was growing up with it I'd have anger that would explode out of nowhere which is the weirdest thing, and what we normally do as humans, we try to attribute that anger to something. So you feel anger and you think, well I'm angry because X, Y and Z. No, you're angry because some little borderline personality bubble has just erupted and you feel rage. Similarly I'd feel intense sadness. I'm 52 now and it's taken me a long time to understand this beast. And I was misdiagnosed for nearly 30 years.

KATE - As what?

CHRIS - Having depression and anxiety. I think with any mental health problem it's cyclical, sometimes I can just function really normally but other times I'm hugely affected by stuff. When you're thinking about people responding to say, emotional stuff, I think a lot of people imagine them sort of exploding and crying and wailing and gnashing of teeth, and what can often happen with me is I'll dissociate.

SIMON - So if someone in an interview says to you, "What is dissociation?" how do you explain and describe it?

CHRIS - It's the mind taking itself away from a traumatic situation. And I believe that that's a switch that can't be un-switched, certainly in me it can't be un-switched, and so there are times when my mind will take me elsewhere, kind of remove me from society, and I have no connection. And my inner belief is that nothing is real.

SIMON - And this is a quote from you. It starts with you looking at your hand, about recognition, nothing seems real.

CHRIS - Yes, it is a tell-tale sign. So people who know me and love me will literally see me looking at my hand, and I'll be looking at my hand and cognitively I know that's my hand, but emotionally, the gut feeling, that gut feeling, a core belief, it's not my hand.

SIMON - So if I talked to you, would you respond?

CHRIS - I'd respond but I wouldn't believe you were real.

SIMON - So you're away with the fairies.

CHRIS - And the real issue is that when it lasts for a long time I can come to believe that I'm an omnipotent, godlike creature, that all this is just being put on for my entertainment, which is weird for somebody who doesn't believe in God.

SIMON - Yes, that could be quite dangerous I can imagine.

CHRIS - Well yes, all this sort of stuff is only traumatic in retrospect, and that will…

KATE - So what causes it?

SIMON - You're asking a big question.

KATE - I know, sorry.

CHRIS - Well no, good question. I've got to say I don't know. Ella and I, my wife, she sat down and we diary-ed everything over a year, things that might be stressful, might not be stressful, times when I was happy, times when I was sad, and we studied this year long, longitudinal study of me and we came to the conclusion, I'll dissociate whenever. But like I said earlier, it feels like it's a switch that can't be un-switched and the best we can hope for is management. And we manage it well.

KATE - So what do you do?

CHRIS - Ella, wherever I am… When I was doing the walk, I mean she's travelling from sunny Warwickshire up to Durness in Scotland, which is a 14 hour trip, she would say, "Right, I'll be up there really quick, put your tent up or something, I've booked you into a bed and breakfast, I'll be up." And then what happens is we put me in a darkened room with loud American cop shows and carbohydrates being slid under the door and we'd just literally wait for it to pass. And sometimes it'll be three days, the longest it has ever been has been three months. And I think it's more traumatic for the people around me. I mean in a relationship I've got to say it's very challenging because imagine, you're with somebody you love and they don't understand what's going on and suddenly, "I don't love you anymore."

KATE - So what's going on in your head then? What are you aware of and what are you not aware of?

CHRIS - The world is seriously fuzzy.

SIMON - Are you aware you are in this place as well?

CHRIS - Again, that took me a year. So I've only been aware that I've been dissociating for, I don't know, properly since I had group psychotherapy and we really looked into it and thought, God, I'm doing it. And Ella described it as being the time traveller's wife, because I'm in and out. And the thing for me that is most tangible in a relationship is when I'm just me I'm very cuddly, friendly, loving, and when I'm dissociating with Ella I can put my hands on her and it feels like I'm handling meat, you know, I'm that disconnected.

SIMON - Oh!

CHRIS - So, girls don't like that.

KATE - [laughs] No.

SIMON - I'm sure you don't.

CHRIS - No, it's weird. I mean for me it's not terribly stressful.

KATE - And what are you able to do during those times?

CHRIS - Not a lot. My depth perception really goes to bits. Say the camber on a road when I'm walking, I'm sort of doing the Ministry of Funny Walks, I'm sort of like I'm walking across a minefield because it's very difficult to take in. It is best if we put me away in the dark and just wait for it to pass.

SIMON - So, we've had a read of your book. There was a bit in it when you told someone about your diagnosis and unwanted reactions, and there was a particular person who said, "Oh my God," and ran away. What sort of reactions do you get?

CHRIS - Do you want me to talk a little bit more about that incident?

SIMON - Okay, absolutely.

CHRIS - I was at school, a parents' evening and an old colleague of mine who is a mental health officer, works with mental health problems, and she, with a gentle tilt to her head, said, "I'm sorry you lost your job Chris. Was it down to the depression?" And I said, "No, it turns out I've got borderline personality disorder." And her hands went up to her face like Munch's 'The Scream' and she backed off saying, "I really have to go and hoover the children," or something like that.

KATE - [laughs] Hoover the children.

CHRIS - She just backed off and fled, with me saying, "It's not a death sentence." But that made me realise that across social work, across mental health services, that borderline personality disorder stands alone with such massive prejudice.

KATE - Is it the way that people have reacted to you? Is that what made you want to go on this walk and start to kind of raise awareness about mental health?

CHRIS - It was that reaction, that reaction really stood out for me. I had another colleague who told me I was too nice to have borderline personality disorder. The thing that stood out was the ignorance and I felt that it was important to get a discussion going. So that was only part of the reason why I thought I'd go wandering off.

KATE - So you picked yourself up, you got your tent, you got your Super Noodles, and off you went.

SIMON - Are they barbecue by the way? I would take barbecue.

CHRIS - Yes, some of them were barbecue, some chicken. I like to mix it up a bit.

SIMON - Living on the edge, literally, yes. [laughs]

CHRIS - I was.

KATE - So what did you take with you? Nothing. No money.

CHRIS - No money, no money at all. Super Noodles, M&M's, a tent.

SIMON - And the public has been amazing you say, and they've been really…

CHRIS - Right from the word go. I crossed the Forth Road Bridge, this woman got off a bus, looked at me, I looked like a bouncer in a skirt.

SIMON - You were wearing a kilt. Yes, okay.

KATE - Just to be clear.

CHRIS - Yes. And she went, [in a Scottish accent] "What on earth are you doing?" And I told her, but I was really babbling because she was the first stranger I'd told what I was up to and she went, "Well, you can't come and stay with me, my husband's not home, and that would feel a bit risky, but here's £10, there's a restaurant in the village, you can go and get yourself some tea." That was the very first person I spoke to who said, "Get yourself some tea." Then I went into this place and a woman piped up in a corner, she said, "You'll save your money, I'm going to buy you tea and I'm going to tell you my story."

KATE - Wow. So your walk, which we keep referring to, where are you going and what are you doing?

CHRIS - Right. The whole idea was to walk around the edge of the UK to highlight the experience of people with mental health problems. Before I started the walk a couple of friends of mine took me aside and said, "Have you read this book by Satish Kumar?" And Satish Kumar was a Jain monk in the 1960s who went on a peace march to highlight how ridiculous nuclear arms were. His guru said, "You'll not be taking any money with you because if you do the only people who you'll speak to will be hoteliers and you won't be motivated to speak with people at the end of the day." And I thought if this man could walk from India into Pakistan when the two countries were at war and expect and receive hospitality I thought surely I could do this around our lovely island. And look at me, I'm starving to death. [laughter]

SIMON - Yeah.

KATE - He's looking the picture of health, ladies and gentlemen.

SIMON - The fact that there was someone you knew who you said, "I have this condition," and they said, "Oh my goodness," and ran away, not you're presumably… What is your patter now when you meet a stranger?

CHRIS - I have great fun with it. First of all I'd really like to talk to Lawrence about language, but we can do that in a bit.

SIMON - That will come up.

CHRIS - But a normal member of the public, you say, "I've got borderline personality disorder," and they go [pauses]. So I say, "Do you ever watch CSI?" and they'll say, "Yeah, I like CSI." "But do you ever watch Criminal Minds?" "Oh yeah, I like that too." "It's usually me that did it." [laughter]

KATE - And then you're hoping for them to say well, "Come and spend the night"?

CHRIS - Well, that's it. I think the humour really works.

SIMON - Becki and Simon, you're looking at each other, surprised.

SIMON C - I thought you were going to say, "I've got a box set if you want to catch it." Would you say that now, after the walk and that experience, you have a greater understanding of what the condition is?

CHRIS - I think it certainly helped. I think it does focus the mind a lot, because, you know, putting myself in a position of that level of vulnerability. And also realising that there's not an awful lot I can do when I dissociate, I am almost utterly unsafe. That came across. And also it helped us realise how often it was actually happening as well, because I think we thought it was happening maybe, I don't know, maybe a month a year or something like that, but…

SIMON - But is it quite good, because sometimes the exercise is good for your mental health. Is it balancing things?

CHRIS - Yes. People have gone down that line with me before, and walking is only good when walking is good, it doesn't do anything for my mental health. I love being outside, I love hugging trees. Obviously you walk around Scotland, you become a tree hugger. You see deer and you see life in the raw. I love very cold temperatures.

SIMON - But you don't think this is actually helping you?

CHRIS - It hasn't helped me at all. It hasn't helped me at all, but it's developed the story and has got people talking.

KATE - And do you think you've actually done what you set out to do? Have you raised awareness?

CHRIS - The good thing about the walk is that what happens with large charities is they target people, so they're often leaning against an open door, with the walk I bump into everybody, I talk to everybody. So I'm bumping into people who claim to have never brushed shoulders with mental ill health or they've never met anybody with mental ill health, so I'm having that conversation with every single person I meet. It could be anybody. So I think the word is certainly getting out there.

SIMON - So before, you were a social worker, then a life coach, which are interesting choices. How did you end up with that career path?

CHRIS - What, a social worker? When I was 12… I'd had an idyllic upbringing, it was just Butlins for holidays and living with my mum and dad and my brother, it was delightful. Then my mum contracted cervical cancer and died over a couple of years. So when I was 12 my mum died. My dad, I think he'd been sort of held together by her and he went back to his first love sadly, which was whisky, and we kind of lost him to whisky. And it was round about that time that I thought, do you know, I want to be a social worker because I want to be there for people because nobody was there for me, and that sort of stuck in my young mind right until I became a social worker.

SIMON - And then you went on to life coaching.

CHRIS - Well life coaching was... [laughs] I became a life coach because I suddenly realised that there was this group of people who were making a lot of money doing exactly what social workers do.

SIMON - Different audience.

CHRIS - But a different audience. I was shocked at the amount of money I could be paid. I'm some kind of hippy-dippy lunatic because it didn't sit well with me, I didn't like that, you know…

KATE - There's not many people would say that.

CHRIS - Some folk were paying me £300 an hour and it really made me acutely unhappy. Because I remember, I did all this training to become a social worker and I was getting, I don't know, £25 an hour? So ultimately life coaching had to go as well as social work.

KATE - And how are you doing with work now? Can you go back to social work? Can you go back to life coaching?

CHRIS - So would you employ somebody who's going to be off for a third of the year?

KATE - Simon, you do loads of stuff about flexible working, could you…?

SIMON - If the right job with the right flexibility… what you're saying is you wouldn't go back to it full time, nine to five, it's got to be something different.

CHRIS - I think the workplace is very chronocentric, they want you nine to five and fitting into their system. We've yet to establish what a mental health ramp looks like.

SIMON - Good phrase, I like that.

KATE - Simon's going to steal that one.

SIMON - I'm going to use that, thank you very much.

CHRIS - It's all yours.

SIMON - Lawrence, I know you've probably got six great questions. Any thoughts on Chris' experiences?

LAWRENCE - Yes, I'm curious to know what you expected when you went on the journey and then how were you surprised?

CHRIS - What I expected on the journey was that people would be fabulous. I expected people to look after me. I expected people to engage in the conversation.

KATE - That's a very positive…

SIMON - I think that's his own mental health condition. [laughs]

CHRIS - This was a kick back against myself, because I'd previously been involved in research for borderline personality disorder and I was presented with pictures on a screen of people's faces and all I had to do was press a switch that said do I trust this person or do I not trust them? And I thought I'm a hippy-dippy social worker, I'm obviously going to trust everybody. And as the faces went by and there was just a vast array of faces, I trusted no one. I wanted to be authentic for the experiment and I was gobsmacked that I didn't trust any of these people.

And so this has been a sort of personal thing to say, look, people are fabulous, they are. And the more I believe people are fabulous the more it's been a self-fulfilling prophesy. I think as humans we have a tendency to suspect other people when we meet them and we think that there's always a danger that a stranger might do you some damage. And if you go into a new relationship thinking that this person is going to make a great contribution to your life really you won't be disappointed.

SIMON - It sounds like you've life coached yourself, dare I say.

KATE - I feel like I'm being life coached as well while I'm sat here.

SIMON - Becki?

BECKI - I just think your story's amazing.

CHRIS - Thank you.

BECKI - And I think that by people welcoming you so much, you seem like such a welcoming person as well and that's either mirrored in them or you've mirrored that from them.

CHRIS - I wonder, yes.

BECKI - I'm not sure which way it is, obviously I don't know you from before you took on this journey but I think that you've definitely, you know, it's amazing what people will do when you give them the chance to understand you a little bit as well I think.

CHRIS - Yes.

KATE - Chris, thank you so much, that was…

SIMON - Stay with us.

CHRIS - I'm right here.

KATE - Will you stay with us for the rest of the show?

CHRIS - Absolutely, yes.

KATE - Excellent. I am very interested to hear what you're going to have to say about the language debate shortly.

CHRIS - Oh, yes.

KATE - Simon, how are you doing?

SIMON - Very well.

KATE - I didn't ask you earlier what adventures you've been on this month, because you weren't here last month. We had a stand in, she was pretty good. It was quite a lot to live up to now you're back, sorry.

SIMON - Thanks for the welcome back.

KATE - Yes, but where the heck have you been? And what was worth ditching us for?

SIMON - I went to Lawrence's part of the world.

KATE - Which is where?

SIMON - California.

KATE - Oh! All right.

SIMON - San Francisco. To be specific, Mountain View, known as Silicon Valley, because I did a little bit of work with the big search engine, Google.

KATE - Wow. Do they pay well?

SIMON - Oh, I don't think that's the point of this conversation.

KATE - Are you sure? Because I feel like…

SIMON - They paid for me to fly there.

CHRIS - I'd like to hear.

KATE - Yeah.

SIMON C - You get paid enough.

KATE - Do they pay well?

SIMON - Look it up on their search engine, that's what I say. The bit I loved was going round campus and anybody who had some sort of noticeable impairment or condition would say to them…

KATE - Or disability, as Lawrence is going to tell you to say.

SIMON - Yeah. Would just nod and say, "Hello," and I'd say, "Hello," and it was just like we were some club. I went from Google, California to a creative sort of arts centre in Shepherd's Bush called The Gate which had a bundle of learning disabled people and I walked through the door and they all look at me and they go, "Who's that boy?" And I say, "I'm not a boy, I'm a man." And they're like, "Yeah, where's your pet?" And I said, "I haven't got a pet," and then, "Where's your…?" And then they'd come running over and they're shaking my hand right next to me. And I just sat with them for an hour and we're coming up with creative ideas for this film they were going to make, and I just thought how lucky am I, one minute I'm at Google, the next minute I'm here, and then I'm working next to Kate Monaghan. What a lucky person I am.

KATE - We all know what the highlight of that was.

SIMON - Google. No, The Gate.

KATE - No, Kate, that's right.

SIMON - Oh, no I said The Gate. [laughter] But thanks for asking.

KATE - Staying with California…

SIMON - We should stay with California, and Berkeley to be precise. Let's bring in Lawrence Carter-Long. Now you used to work for the US Government, Lawrence.

LAWRENCE - I did.

SIMON - Tell us about your job, Lawrence.

LAWRENCE - Well I'm the brand new Director of Communications for the Disability Rights Education and Defence Fund, and the Director of their Disability and Media Alliance Project.

KATE - That sounds very fancy. What's the actual job?

LAWRENCE - The actual job is pitching and placing news stories, looking at the legal work. DREDF, as the acronym is reduced to, is known for doing legal work and advocacy work in the legal arena, but also with parents and children with disabilities and disabled kids in schools. But they've also had this project with the Disability and Media Alliance Project, really pushing to make sure that we have more representation and accurate representations in media. So that's TV, radio, all of the above.

KATE - Tell me about #SayTheWord, now you want people to say disability?

LAWRENCE - I do. Disability or disabled, it doesn't much matter to me. And largely it's because there's so much confusion around it. What I've come to realise in doing disability work now for well over a decade and having a disability for 50 years, is that the word has changed throughout time. Disability used to be just a diagnosis, that was it. And what's happened I think since that time, let's say in the last 40 years in particular, it's come to mean other things, it means much more than just a diagnosis, it means identity, it means community. Politically it means constituency. And I think it increasingly means history.

And so when we say the word disabled now it means much more than it used to mean and I think we need to encompass that. I also think that when you're looking at public policy and you're looking at legislation in the United States the law is called the Americans with Disabilities Act. That's for a reason. My old boss at the National Council on Disability, Rebecca Cokley, used to say, "It's not called the Americans With Special Needs Act, and that's for a reason." If you want to be covered under the law you have to identify as disabled, you have to kind of claim it in order to get those protections.

SIMON - And what's your theory about the avoidance then? Why are we, or why are people trying to find alternative words and not using the word disabled?

LAWRENCE - We've always been taught to distance ourselves from disability, you know, there's this sense, even if people say, "I'm a person with a disability," that it's something that's not quite a part of you. There's a dissociative aspect if you will that people tend to think it's something you can pick up when you want it and leave behind when you don't. And that just seems ridiculous to me.

In 2017, nearly 2018, anybody who would dare to assert, let's say in a parallel way that race doesn't matter or that they see the person, not the gender [laughter] would instantly and I think rightfully be called out as either naive or ignorant. And people, they don't mean to be, but I think they're largely unaware, misinformed, and at times frightened, and so what happens is there's this tendency to minimise or erase the disability experience without having any true understanding of it to begin with. And so what happens, people will say, "Oh, disability is just a difference," or, "Everyone is disabled," but they don't face those same barriers.

KATE - Lawrence, I'm going to give you some words that we have been picking up on recently, and I want you to tell us, in a quick-fire manner, why disabled should be used instead.

SIMON - It's like a really bad quiz, Lawrence.

KATE - Yeah. The first one is possibly my favourite, diff-abled. This is a conflation or a portmanteau of differently abled.

LAWRENCE - Well, differently abled is confusing to begin with, so I think this compounds an already confusing situation, and I think it may unintentionally make fun of people who have speech impediments. [laughter] So I would suggest not using it.

SIMON - Okay, the next one, which I heard on 'South Park' many years ago and it seeped into the conversation. Handy- capable.

LAWRENCE - Handy-capable. It sounds like a kitchen utensil. It slices, it dices, it makes julienne fries. If you're not going to sell the thing, it might be the vehicle that Handy Man or some sort of disabled superhero gets around in.

SIMON - Yes, I like it.

LAWRENCE - But I don't think it has any relation to the real experience of disabled people whatsoever.

KATE - Right. What about special needs?

LAWRENCE - Special needs. Very simply put. A need isn't special if other people get to take the same thing for granted. So if you're looking to get a job, that's not special. If you're looking to go to school, that's not special.

CHRIS - Nice.

LAWRENCE - We have to quit segregating people on the labels that we use, and so I think special needs is probably the worst of the bunch. If there was anything I hated the most on this list I'd say special needs is probably it.

SIMON - I'm feeling this. Can we learn from Harry Potter? You're a big fan Kate. He's the one who says, "Voldemort" everyone else is, "Oh, he must not be named."

KATE - That's right.

SIMON - And Potter's the one who claims the word, owns it, and guess what? He defeats it.

LAWRENCE - That's right, and you have to claim it and own it I think in order to…

KATE - And then defeat the disability.

LAWRENCE - Well no, what you're defeating is the nonsense that people assume about disability.

KATE - I just love this. [in a sing-song voice] Cripples, spastic, you say cripple, I say spastic.

LAWRENCE - I think you have to sing it. I think that's where we get to the point, yes.

KATE - I am going to sing it. You finish it off, go on. I say cripple…

SIMON - I'm not going to finish anything off.

KATE - …you say spastic. Let's call the whole thing off.

SIMON - It's take your whole leg off I'd say.

KATE - Let's take the whole leg off. Chris, I feel like you want to jump in here and I'm told you use language around mental health that some people might consider un-PC.

CHRIS - Yes. I run events and what I always do is get people to call out all the bad names for mental ill health that there are, and as you can imagine it's really cringe-y for all of them. I think what we're doing as a community when we become language Nazis, when we say, "Oh I don't like to be referred to in that way, I don't like you saying that," when was the last time you had a good conversation with somebody when you told them to shut up? You know, it doesn't work.

So when I was walking around the edge of the UK some people were saying, "I hope you don't mind me saying, Chris, but you're crazy for what you're doing, you must be mad, you must be a loony." And these things don't matter to me. And I think the big error here is that we are assuming that people who don't use exactly the right language have bad attitudes towards people with mental health problems. And that's lazy.

KATE - I've noticed that we have been referring to mental health as mental health, and you have been saying mental ill health.

CHRIS - The problem for me is that we're not talking about mental health because mental ill health is the thing that I have a difficulty with.

SIMON - I've had conversations where we have had mental ill health and that's what they use, it's everyone else gets a bit weird and says oh, mental health, mental health, because they don't want to say.

KATE - Mental health problems or…

SIMON - Yes.

KATE - Lawrence, what do you think about that?

LAWRENCE - I think it's absolutely correct. You know, again it's that tendency to distance oneself and to project one's assumptions onto the disabled person. Where we get into problems, I think we're much better off if we allow people to sort of speak from where they are and sort of speak for themselves and to simplify the nonsense so that we can really address the issues and the experience that people face and that people live.

I think there's been this tendency because people are afraid or trying to be polite that what we've done is we've watered down the kind of things that people face. And sometimes it's not a pleasant experience and I think we need to just simply call it what it is. If we started to do that we'd all be a lot happier.

SIMON - So Lawrence, myself, you, Chris, are a little bit older, I mean Becki's…

KATE - A little bit older, let's just say, probably 30 years…

SIMON - Let's use appropriate language again…

CHRIS - How very dare you.

KATE - Older than perhaps Becki and Simon in front of us.

SIMON - Becki and Simon, you're a little bit… So you're the next generation. Where are you out on some of these words? Is this a big thing for you? Is it irrelevant?

BECKI - I find this conversation very interesting because when I had my stroke, for about the first year I did not consider myself to be disabled.

KATE - How long ago was that?

BECKI - It's coming up to six years ago, so it was in 2011. I was told constantly I was recovering, I was having physiotherapy, I was having occupational therapy and I was going to get better. Being disabled wasn't something I identified with straight away. I even applied to do mystery shopping for a charity who sort of reviewed the accessibility of venues, and on the form it said, "Are you disabled?" and I ticked, "No," and they got in touch and were like, "Well, you can't do it if you're not disabled." [laughter] But I just didn't I guess associate myself with that yet.

And what happened was I was doing my dissertation and I was doing it on the representations of disability and I learned that offences are in the eye of the person that's offended and I also learned a lot about the social and medical… Yes, the social and medical models of disability. And it was sort of as I was looking into that and I learned more about how disability is perceived, that I sort of began to own disability. And as you said before, like it became, I think it was Lawrence who said it, became a part of me. And I felt okay with that all of a sudden, but it took me, well it was probably about a year, two years, before I really recognised and acknowledged myself as a disabled person and saw the benefits of that instead of the negatives of it I guess.

KATE - Simon, how about you?

SIMON C - I guess for me naming things and putting it into potentially a box can actually be a disadvantage too, because you might not see it fully for what it is, you might just associate it to one word. And associating things to just one thing, people might have a perspective or an idea of that, whereas if you don't name it then they may see it for what it is fully.

SIMON - Are you worried about a job if you say?

KATE - Are you worried that somebody just will see you as a disabled person and not a whole…?

SIMON C - Yes, and they might not understand me fully and appreciate me fully for who I am.

LAWRENCE - And I would say that we not only have to claim it and say it, but we have to define it for ourselves, that's where the difference comes in. I've had cerebral palsy since birth, I just turned 50 years old this year, I didn't do disability advocacy until I was 35 years old. Why? Because I believed all the nonsense that other people told me about disability. What happened when I sort of claimed it and owned it and was able to embrace it was I realised that here we are coming up on the 28th anniversary of the passage of the Americans with Disabilities Act, that was 1990, people who grew up under the ADA didn't feel shame, they didn't have any need to distance themselves from anything.

And I think what's happened is the internet, things like the Ouch podcast, the burgeoning field of disability studies, it gave people who had been disabled since birth or those who became or got into advocacy later in life unprecedented access to read the work of or engage with pioneers in the disability rights movement and what that did was it gave them some guidance, it gave them some solidarity. Disability was no longer an individual burden as we were led to believe, as I was certainly led to believe when I was a kid, but it became much more, it became a diverse and vibrant community. It had this history and it had a legacy that was all our own. And so when I got away from just myself and realised that this was about disabled people, that it was about a community, a group, that I can learn from and be a part of, that changed everything.

KATE - Thank you, Lawrence. You will hang around with us until the end of the show?

LAWRENCE - Happy to.

KATE - Brilliant.

SIMON - Coming up.

[music]

SIMON - You've just heard 'Wheelchair Sports Camp' and we'll be hearing the whole of that track at the of the show.

KATE - Becki Cobb and boyfriend, Simon Commins are still with us. They both had strokes as young adults but met by chance and fell in love some years later. 'Hidden in Me' is their autobiographical new self-published book which is available now. Guys, why did you want to share your story?

SIMON C - Well. [laughter]

BECKI - I don't know. Why did we want to share our story?

SIMON C - Well, I would say that for something that happens to someone like the brain haemorrhage that happened to me and the stroke that happened to Becki, I think at some point in your life when you experience something like that you're going to want to tell someone about it, and it might not be straight away. So after going through everything personally that I did after getting back into education, going through university, college, everything, when I started employment I was then in more of a position, now that I'd sorted myself out, to be able to try to express my story to anybody else. I wasn't in the right frame of mind to do it before that.

BECKI - Yes, I think we wanted to air awareness that these things happen to younger people, Simon was 17, I was 21, people associate strokes with happening to people over 60, not people who are at the height of their life. You know when you think of a 21 year old you think of it being the best years of your life, and similarly with someone who's 17 in college. And I think that we felt that we wanted to tell our stories of how it doesn't have to be the end of something and it can be the start of something just as beautiful, just as great, just as fantastic, just as fulfilling as not having a brain injury as well.

SIMON C - Well personally, and I'm sure you too as well Becki, but I didn't want it to define me as a person, I still wanted that control of who I was.

BECKI - The book, a lot of it is about the hidden potential of life after a brain injury and I guess the things you can go on to achieve, despite or…

SIMON - Or almost as a result sometimes.

BECKI - Yes, as a result of. I mean me and Simon would not have met if we hadn't have had our brain injuries.

SIMON C - And we wouldn't be here talking to you guys if we…

SIMON - I'm sorry about that. [laughter]

SIMON C - Well.

BECKI - That is the worst part.

SIMON - There are ups and downs aren't there? For the listener, this has so endeared me, every now and again you two are just holding hands. I don't think we've had that in the studio…

KATE - No, we haven't.

SIMON - …and it's so lovely. It really is.

BECKI - Thank you.

CHRIS - Don't cry, it's fine. [laughter]

SIMON - And I like the fact that you're saying you wanted to share the story but this is about you and Becki, you're saying you want to share it because you want other people to hear it. And that makes sense as well. Can we go back to the day? I mean, Becki, would you describe what happened?

BECKI - Of my stroke?

SIMON - Yes.

BECKI - Yeah, so for me, mine happened in 2011 which I think I've said about a million times now. So in 2011, it was February, it was a Sunday morning, I was walking to work. I had a Saturday job in a clothes shop, well a weekend job in a clothes shop, and I hadn't had breakfast but it was a really sunny morning and I remember thinking oh, I'll walk instead of getting the bus because it's a nice day and I feel great.

It was about a half an hour walk and about 15 minutes into it I felt really lightheaded, I was stood outside a pub and I thought oh, I'll have my apple that I'd grabbed for breakfast to see if the light-headedness goes away and instead I dropped the apple to the floor, fell to my knees and I couldn't get back up again.

SIMON - Goodness.

BECKI - I thought I'd fainted. I was not in any pain at all which is unusual, I think a lot of people do have pain when they have strokes, but I was very lucky that I was crawling to a bin thinking that I could pull myself back up, that was sort of my last resort, if I can reach this bin and pull myself onto my feet I can get to work and I'll be fine, but what actually happened was I got to the bin and I couldn't pull myself up and I was very lucky that two policemen drove past. They stopped their car, asked me if I was okay, realised that I wasn't.

I wasn't coherent, I was shaking quite a lot, and they got out and helped me, they called an ambulance for me. I was obviously rushed to hospital where I don't really remember the rest of the day. This happened at about ten o'clock in the morning I think, about ten o'clock at night, that was when I overheard a nurse saying that I'd had a stroke. I didn't realise I was paralysed, I didn't know what it meant, it was a word that I'd heard that I knew was serious but I didn't know what that meant for me or how it was going to affect my life.

KATE - Simon, what was your stroke like?

SIMON C - Okay, so I'd gone to college in the morning just as normal and we'd had a couple of lessons. I was working as a life guard at the time. In the evening I needed to go back to the leisure centre that I was currently working at, so I got on the bus and I got near to the bus stop right at the end of the journey and as I stood up in my chair my legs felt a bit like jelly. And I didn't really get what was going on, so I started to walk off the bus and as I was walking down the bus my legs got heavier and heavier as I got further and further to the exit. So when I got off I walked through the bus station. It wasn't looking sort of normal, everything that I knew of the bus station was changing and my eyesight was becoming worse.

I got through the bus station, walked through an alleyway behind a pub, and I got to the back of the building and sat on one of the walls there, and this feeling in my head wasn't a headache but began to get more and more intense and I started to feel as if I was beginning to lose control of my vision, of the way that I moved. I got my phone out and tried to call my dad and as I tried to call my dad I couldn't get through. I put my bag down on the floor, put my head on it and tried to go to sleep.

What saved me was I was behind an army careers office and there was a CCTV camera at the back there and two guys were watching me. They saw that I was at the back of the building near a car park, there were people walking past, not helping, and they came out to try to communicate with me, but because I was experiencing a stroke my language was slurring, I couldn't explain what was happening, because I didn't know what was happening, it was a complete and utter crazy situation that I was in.

So when they tried to communicate with me and I tried to write something down I couldn't write anything down, I wrote "ill" on this piece of paper, that's the only thing that I could write down, I couldn't explain what was happening. They called an ambulance and I was taken to the local hospital. I remember seeing the ambulance wheel, that's one thing that I remember, the ambulance wheel next to me, I don't remember the sound or anything, but the ambulance wheel. I was then taken to the hospital and then sent to a more specialist unit and I was operated on straight away. So what I was experiencing was a brain haemorrhage.

SIMON - And that's distinct because you said stroke, brain haemorrhage. There's a distinction?

BECKI - Slightly different. Well, they are different. So mine was caused by a blood clot which passed through a hole in my heart that I didn't know I had, so the blood clot reached my brain and cut off the oxygen supply effectively, whereas with a haemorrhage it's like your brain is flooded with blood.

SIMON C - Yes. So it was burst blood vessels that decided to go when they did.

SIMON - The important bit was people got involved quite quickly by the sounds of it?

BECKI - Yes. Well, like Simon said, people walked past him, people also walked past me. I remember looking at somebody and they walked past and I think that was because I collapsed outside a pub and it was a Sunday morning and they probably thought that I was leaving from the night before or something like that. And relating to Chris' story, people are often scared of what they don't understand so they didn't know what was happening and probably thought we were on drugs, thought we were drunk, didn't want to approach us, and it was luckily because we had those, I guess, guardian angels, in a way who were willing to come…

SIMON C - To give us a chance.

BECKI - …and say, "What's happening to you? Are you okay? Do you need help?" and yes, we both absolutely did.

SIMON C - Yes. Had we been there much longer I think everything would have been…

SIMON - Your bit about laying down on your backpack and wanting to fall asleep, that's terrifying now.

SIMON C - Yes, I mean can I remember the space of time in between doing that and then waking up, as in being in hospital, and then realising what had happened, you know, that space of time, what happened? It must have been five days or so. And thinking about the difference between, like you say, the person before and after, there was I suppose a prolonged period of time where I didn't know who I was properly, and I think that it wasn't until I went home that I started to pick up and realise that things physically had changed in terms of my eyesight; I couldn't see as well as I could before. I was forgetting things, and I wasn't able to read as well as I could before and I was having word finding difficulties. So it wasn't really until I started to get into life again after being in hospital that things started to take shape.

KATE - What was recovery like for both of you?

BECKI - It sort of throws your life upside down before you've even figured out what your life is, and that's really difficult because you've got to figure yourself out before you know who you are anyway.

SIMON - Was this part of your recovery? Did they talk about your youth or your age or was it very medicinal and this is what we need you to do?

BECKI - Mine was I think very medicinal, so it was like physiotherapy, occupational therapy. I didn't need speech and language therapy myself, that was something that Simon had, but my language wasn't affected because of the area of brain that the stroke happened in, it affected just the left hand side of my body. But the only thing related to my age which I guess was a positive was that your brain has more plasticity when you're younger, so there's a higher chance I guess of rewiring the routes that your brain sends messages through and regaining that movement or that language or the memories and things like that.

SIMON C - I think you can work around it, you become used to a different way of trying to explain something. Instead of finding the word to say you express it slightly differently to get around that and you become used to doing that and I think you adapt to it in that sort of way. That's how I think of it.

KATE - So how did you guys actually meet?

SIMON - Yes! So that's what we want to hear.

BECKI - I'll let Simon tell that story.

SIMON C - This is the killer question isn't it?

KATE - It's very romantic.

BECKI - I had a very, very good friend who visited me a lot in hospital and I was quite close to her family as well and they used to visit me as well, and her dad at his work arranged a charity raffle for one of the stoke charities that I was in involved with and I was invited to go and collect the cheque and it just happened to be at Simon's work. And I was invited to sort of look around the site because it was on a building project and…

SIMON - You're a quantity surveyor we understand.

SIMON C - I am.

BECKI - I was wearing this hi-vis jacket, a hard hat, I had these awful boots on…

SIMON C - She looked great. [laughter]

BECKI - …big gloves, and I was taken on a little tour. And at the end of it, because it was only two years, just under two years after my stroke, I was exhausted, it was really difficult for me to sort of keep up with everybody. At the end of it I was like, "I need to sit down so that I can take all this gear off." And they took me into this little room that Simon just happened to be sat in.

SIMON C - Where I was working.

SIMON - And then?

SIMON C - And then these three ladies turned up and I didn't know any of them but I knew the guy that was with the three of them, then he said, "Oh, Becki had a stroke," and the quickest opportunity, "Well, wow, I've had a stroke too."

SIMON - Good opening line, Simon.

BECKI - It's a great chat up line.

SIMON - People have tried to matchmaker me with other short people, and it sometimes bugs me, but I always know there's great advantages of dating someone who is like you. So are there amazing advantages of being the two of you, or being together?

BECKI - I think we just really understand each other. Even though our strokes were so different and the effects were completely opposite really weren't they?

SIMON C - Yes.

BECKI - We have that understanding of things are a little bit harder sometimes and this is why. And I guess if I can't do something because I can't walk that far or I'm too tired or I can't lift something up because I can only use one hand, Simon never gets angry with me or moans or asks why, it's just that, "Okay, well how can I help you achieve it?" And I think that's kind of, I hope that I'm similar with him in terms of when he finds things difficult with planning or…

SIMON C - Doing the paperwork.

BECKI - Doing paperwork, yes. We've only had a couple of instances where we were sort of misunderstood, our intentions.

SIMON C - Yes, and that was when we were decorating the flat.

BECKI - He wasn't doing it quick enough.

SIMON C - I never do.

SIMON - Chris, you said you, I think you're married to Ella, but mental health, have people sort of said, "Oh, you must meet this person. You must date somebody with the same condition?"

CHRIS - I haven't had that but I mean one of the things with borderline personality disorder, the belief is that people with borderline personality disorder are absolute car crashes at relationships, and - spoiler alert - at the end of my book I get married to Ella. So there.

SIMON - Lawrence. Dating another person with CP or a disability?

LAWRENCE - Well, spastic fantastic is one way to put it. [laughter] Well both, I've dated and both been married to folks who have been disabled and non disabled dependent. And I find that where the issues come up it has more to do with who's doing the dishes or the decorating than anything to do with disability.

SIMON - That's it for the December 2017 Ouch talk show. Thanks go to our guests, Chris Young, Lawrence Carter-Long, Becki Cobb and Simon Commins. Thanks to the Ouch team, Damon Rose, Beth Rose - not related - and Dan Gordon. The studio manager was Jon Taylor-Wade. The producer was Emma Tracey.

KATE - Time for some music now. This is 'Wheelchair Sports Camp'.

SIMON - I've been Simon Minty. She's been Kate Monaghan. We're back in January 2018.

KATE - Goodbye.

[music: Wheelchair Sports Camp, 'Scooter Pack']

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