This is a full transcript of Meet the "Vulnerables": Baroness Jane Campbell, presented by We're just Octavia Woodward, and released on 15 May 2020.
OCTAVIA - Do you think the word 'vulnerable' has made the situation worse? That term - 'vulnerable people'?
JANE - I mean we are not vulnerable people. We are in vulnerable situations. I absolutely hate the word vulnerable person. Because I'm anything but.
OCTAVIA - Hello and welcome to the Ouch Podcast. I'm Octavia Woodward - a journalist here at the BBC - and, if you believe what the government is saying, I'm "vulnerable". You might have heard that phrase a lot recently, along with things like "underlying health conditions" and "at risk categories". I think its safe to say that the past couple of months have been pretty scary for everyone at times - but perhaps even more so for disabled people. Some of us were asked to sign "do not resuscitate" forms in the event we got really sick. And an NHS "Decision Support Tool" emerged asking doctors to give patients "Frailty Scores". If you were too high, you might not get the same level of care as others - it said. There was backlash - and a muddled retraction - But many thought the tone had been set. At best - some disabled people thought it was pretty ignorant. And at worst? Well, some said it had a bit of "eugenicsy vibe". Either way it's been pretty worrying time for a lot of people. So I wanted to have a chat with others in a similar position, to find out more about the people behind the frailty scores, and what they think about that phrase. This is Meet the "Vulnerables". And for our first episode we have gone straight to the top. Our guest is quite literally ranked number one in the UK disability power rankings. Which is unsurprising as without her I probably wouldn't have had the life that I led. I am of course talking about Baroness Jane Campbell. Jane, thank you so much for joining me today.
JANE - Well thank you so much Octavia, I am blushing as we speak…..
OCTAVIA - So I think because we both have SMA - which for listeners that don't know is a condition that means we have very weak muscles - sometimes we need to use ventilators which explains that sound - and we both use electric wheelchairs. Because of all that I've always been that bit more aware of the 'mythology' that surrounds you as person.
JANE - Oh dear.
OCTAVIA - That's what it felt like growing up. I think it's always been like… you've managed to do so much. And so we have this little bit of video which I think demonstrates that what I mean by that.
ARCHIVE CLIP OF CHANT AT PROTEST- What do we want? Civil Rights. When do we want them? Now. What do we want? [fades out]
OCTAVIA - So that was the 1995 Westminster Bridge protest when disabled people across the country blocked traffic and demanded they should be treated fairly. What was that like?
JANE - Ooh well, you have transported me right back in time. It was for me probably one of the most empowering experiences of my life. Until that day, I had never broken the law. I had always been a good abiding citizen. And yet I had to find - or dig deep inside me find the courage to, to basically say 'hey' enough is enough. We are not going to be second class citizens anymore. And this is the beginning of our journey. And it was.. it was a transformative day for me personally.
OCTAVIA - How did you feel, were you… What was the kind of emotions going on?
JANE - There was a lot of excitement, a lot of nervousness. There was also a lot of confusion because none of us had ever done an action in our lives before. Some people had barely come out of their front doors.
OCTAVIA - How do you even organise something like that?
JANE - There was a lot of phone calls, a lot of persuading. Then we had to organize transport for people because the public transport was not accessible then. So we managed to get an old Dial-a-Ride bus which we then couldn't tell the Dial-a-Ride people what we were using it for. So, yes, there was a lot of organising.
OCTAVIA - How long did you stay there for?
JANE - About two or three hours. The police, frankly, did not know whether to pat us on the head and give us an ice-cream or try to arrest us. It was complete confusion.
OCTAVIA - When I've been doing research - which is always a bit of a weird phrase to say - I always read the phrase 'bossy redhead' when you describe yourself. Is that something your parents encouraged? Where did you find that?
JANE - Well I was very very lucky. I had parents that wouldn't accept that I was going to just sit home, be a disabled person who was looked after. They always pushed me really hard to get out there and to get a life. They were very, very, very pushy parents. And I think because they had to struggle. You know, my dad was working class, my mom was working class. So they knew what it was like to build themselves a life. So they felt that we had to do the same - as their kids. And that's what they did. And I wasn't treated any differently to my sister and I got punished when she got punished.
OCTAVIA - I think when I look at how I was raised versus how I see some other people raised, there seems to be this this - two factions of raising disabled people. Either what your parents did, and I think what my parents did as well , cos they were very much: 'you have to make people want to help you. No-one's going to want to help you'. So either you train your children to adapt to a world that isn't adapted for them. Or this this false hope that the world's going to adapt for you. But that's not going to happen.
JANE - And of course there are parents who, you know, are very scared for their children. And they wrap them up in cotton wool. There's got to be a middle ground. So I always say, look, when your child wants to go to that disco, just send them out and take a few risks. I think the dignity of risk is what is the most important gifts that you can give a child.
OCTAVIA - I know you want to a segregated school. Did you feel like the attitude from your parents was very different from how you were brought up in school?
JANE - Absolutely. And to be honest, my parents wanted to go to the same school as my sister. But no school would have me. No school was accessible. So I had to go to the local special school.
OCTAVIA - And what was that like?
JANE - It was pretty grim. I mean, I always say to people that my life was black and white and only turned colour when I left school and went to college. And that's when my life began. So for the first 16 years, I used to be bored, frustrated. I sat around painting pictures and basket weaving and sewing. And of course, that became very boring too. So I then became very awkward and difficult, and very rude because I've been so bored. It was early when I was 15 years old and there was a new headmistress who came in, and she was a reformer. And let me go into her office to do proper academic work, and I really wanted to do it more because I knew it was my ticket out of the ghetto.
OCTAVIA - I can't even imagine what that's like. I mean, I was very fortunate because I went to mainstream school, but also it did kind of lead to a scenario where until I was like 18 I was the only disabled person that I knew. It did make me think about your life, and how you had this amazing ability to unite lots of people with different disabilities and fight for our rights. And do you think going to segregated school might have helped that?
JANE - It's interesting you should say that, Octavia, because actually I didn't like disabled people when I was at school, because I didn't think I was like them. I was a very mixed up child. But like so many disabled people at that time, I just wanted to be normal. I just wanted to be like other kids. And so going to the school that I went to, I was incredibly ashamed. So when I left the school, I wouldn't have anything to do with other disabled people. I just to be with able bodied kids, because I so wanted to fit in. And it was only when I began to find that actually I wasn't gonna fit into that world either that I began think 'Oh. So where do we go from here?'
OCTAVIA - I really want to ask about that transition, because I think for better or for worse, I'm still slightly in that mindset. I'm trying to get better. But I think I spent so much, especially when I left school and went to uni of just like trying to prove that I wasn't disabled, like despite the wheelchair. 'Oh, yeah. I'm completely fine. Don't know what you guys are talking about'. So how did you wrestle with that and like… become okay.
JANE - Well to begin with… And I don't know about you Octavia, but I found it exhausting. Just keeping up.
OCTAVIA - Yes.
JANE - You're going to the nightclub and they've got to carry you all the way down and carry you back up. It was fine going down. But when they were drunk coming up it was really dangerous. And you always got to fit in with what I call able bodied environment. So that I found tiring. I found that I had to work extra hard to keep up just physically. I thought, God, I don't want to do this anymore. But I was still confused because I was still denying who I was. I just said, I'm a person. I'm not a disabled person. And it was when I went - in my first job - and I was having a lot of problems with this first job because they they sacked me for not being able to use a typewriter. I just could not deal with it. I just couldn't understand. I got very down because I thought I was unemployable. I got to have quite low self-esteem. And luckily, I was reading a magazine. and it said Are you sick of the barriers in society? Do you want to change your lives? Come to this conference. And I went to my first conference of disabled people. It was like that hallelujah moment. And they said 'You are not the problem. Society is. And if you want to change your life we're gonna change it'. And it was that that moment that I realised that I was proud to be a disabled person. I didn't have to be ashamed anymore. I was 22 years old. I spent 22 years trying to be a so-called normal person. And I decided that that wasn't the way to go.
OCTAVIA - I mean, I'm 22 now. So that's kind of amazing.
JANE - There's hope for you yet.
OCTAVIA - There's hope I might be able to accept myself.
OCTAVIA - I just want to concentrate on university for like a small bit because you brought the Direct Payment Act. Without that, I wouldn't have been able to hire my own carers at uni, which bought me so much freedom. But I want to ask, how did you cope at uni with carers and everything?
JANE - Do you really want to know?
OCTAVIA - Yes!
JANE - I got myself a boyfriend. That is how I coped.
OCTAVIA - Is that what you looked for in a man just like. Can you do my care?
JANE - I'd better not say because I'm now married. But… as you said we have to go and find people to be part of our lives. It doesn't work the other way round very easily. So again I was very gregarious, I was very open. I encourage people to come to me. Another thing is that my parents always told both me and my sister that we were beautiful and we should love ourselves, for who we were because we were lovely girls. And so if you're told that your child, you believe it. And I know a lot of disabled people, they don't see themselves as attractive and especially now with the emphasis on the body beautiful, it's really difficult.
OCTAVIA - Yeah. I think I was always fed that narrative, like 'it will take someone very special to love you'. And I was like oh, great. Wonderful. And then I got to you uni and realised that wasn't the case. And my life opened up after that. And like oh, I'm just just the same as everyone else . But that narrative is like - eugh.
JANE - Yes, it's it's a bit. It does get you down. And also people they're always surprised when I go out with my husband. Maybe we're in the pub or… People will say, oh, is that your carer? And I go no he's my husband and they go 'really?'. So there's a lot of attitude around that whole area that we have to deal with. But, no, I never had a problem with boyfriends. I have to say.
OCTAVIA - I mean when i said you were prolific one of the things that I was growing up, I always thought, well, she has a husband. When I was like 14 it was more impressive than the House of Lords. But in a bad way - because I just wasn't used to seeing that representation.
JANE - Actually, Octavia, I've had two husbands, so I'm very greedy. Believe me, redheads have more fun. So you've got a lot going for you.
OCTAVIA - Throughout our conversation we've talked about quite a few struggles that disabled people go through. But that wasn't just in the past. There are still some massive debates going on about the value of disabled life. And so I have a clip from that really great film 'Me before you' that I wanted to play purely because I loved your response to it so much.
[Clip from "Me Before You"]
ACTRESS - "You really are the most impossible man"
ACTOR - "And the world will definitely be a better place without me."
OCTAVIA - So this film is about a man who goes through with assisted suicide, and you gave a great interview about how disabled people aren't just obsessed with dying
JANE - [News archive clip from protest] - I'm here because disabled people in this country are sick to death in this kind of image rammed down their throat. Assisted dying has millions of followers because the major social stereotype is that it is tragic, sad and a life not worth living if you are in a wheelchair. And I'm here to say stop it. We've had enough. Why don't you go write something that is realistic, not the crap that says 'it's tragic'. That is not the truth.
OCTAVIA - Why do you think that is still so prevalent today, despite all the progress?
JANE - Well I think we still live in a society that sees disability as a tragedy. I mean, when a disabled child is born you don't hear midwives say 'Oh, congratulations, Mrs.. You have a beautiful disabled boy'. I mean, it's always seen as a loss or a tragedy. A lot of the charitable fundraising events, it's all predicated about you know, how how tough, sad and tragic our lives are. But if you give a £10 note that you're helping to change that person's life because they can go to Disney for a week or two.
OCTAVIA - I got given money on the street once.
JANE - It's so stereotypical. Disabled people, you know, we do not need people's pity. We just need to be included in life.
OCTAVIA - So this pandemic, which is why we're here, unfortunately. And talking through screens.
JANE - It's pretty grim.
OCTAVIA - I mean… I've had better summers. But it's the same issue that we've been talking about. And I feel like coronavirus has created a situation where the same inequalities and problems have just been exacerbated and put on steroids.
JANE - I think, you know, any big extraordinary situation there's a lot of panic. So when people are very scared, they say things that they wouldn't do normally. So if you're on a boat, that's sinking, people will literally crawl over other people to save themselves. So I do understand that natural survival instinct. However, as you say, with this pandemic there has been some very worrying issues emerging. And one of those was the 'do not resuscitate' conversations that GPs were having with disabled people, whether we should or shouldn't go on ventilators. Should we stay at home and not go to hospital because there were more there were fitter more able people to help first. And it was all about survival of the fittest. And some of us got together and we wrote an open letter, saying hey hey hey stop all this. You can't do this. This is discriminatory and it's counter to the Equality Act, blah, blah, blah. And actually to give them their due, the NHS responded within a week by producing their own letter - basically mirroring what we said in the letter. And it was sent out to all NHS trusts, GPs etc.. However, it's still happening a bit in small pockets. But it does show that discrimination will always be there. And we have to be vigilant.
OCTAVIA - Do you say the word 'vulnerable' has made the situation worse? That term - 'vulnerable people'?
JANE - It doesn't help, does it? I mean we are not vulnerable people. We are in vulnerable situations. If you put disabled people into their house and you don't give them any protective clothing. But their PAs are still coming in and out, having mixed with other people. Then you put them in a vulnerable situation and I absolutely hate the word vulnerable. Because I'm anything but.
OCTAVIA - Obviously, thanks to you - like I said, I wouldn't have my job. I wouldn't have had the life I have.
JANE - Oh, I don't know about that.
OCTAVIA - I think it might have been made easier by you. There were more ramps involved in my life than you would have had.
JANE - Well, it was a collective endeavour. It certainly wasn't just me. I mean, we were an extraordinary movement of very determined disabled people.
OCTAVIA - But if you lived during my time - so those rights had been fought for, and we're still fighting, there's a long way to go. Do you think you still would have gone down the route to have gone down? Or would you have gone for a different job?
JANE - I think I would be involved in the human rights world in some form or another. I certainly would have gone into politics. I think if I were to say one thing yet, I would say, you know, as a call to disabled people out there. As an individual, you might change things a little, but if you come together with other disabled people to become part of some collective endeavour then you will feel a lot more liberated I and a lot less frustrated. And I think some pretty scary things ahead. We're going to go into a big economic downturn, and that's not good news for us. So, we have to be ready. And we have to be ready to say we must have a slice of this cake. That we're not the Expendables. We're human beings.
OCTAVIA - Thank you so so much
JANE - Well you're welcome Octavia, and I'm glad that you and I have met each other at last.
OCTAVIA - So am I, and I'd love to talk to you, especially about ventilation. And… just about everything, that would be amazing. You've been listening to Meet The "Vulnerables" from BBC Ouch, if there's someone you think we should speak to for this series, please get in touch. We're @bbcouch on Twitter, find us on Facebook at BBC Ouch or you can email us on firstname.lastname@example.org .