91Èȱ¬

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10th September 2024

bbc.co.uk/accessall

Access All – episode 124

Presented by Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello listeners. What are you watching on TV at the moment? Because I’ve been a bit taken in by a series of documentaries that are on 91Èȱ¬ One and 91Èȱ¬ iPlayer just now, and they’re called In My Own Words. And basically they are a selection of artists and writers and comedians and poets talking about what’s shaped their extraordinary lives really. Now, there are a couple of episodes that did particularly grab my attention, because I’m always looking for the disability in everything, but one is with Billy Connolly who has Parkinson’s, and the one that we’re going to be talking about today which is Alison Lapper. It follows her as she launches her new exhibition Lost in Parys, which tells the life story of her son Parys, who died at the age of 19. And just a note that this episode talks about some difficult subjects like grief and the loss of a child.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You might remember a sculpture of a naked pregnant woman with a limb difference that was on the fourth plinth in Trafalgar Square in London for two years from 2005. It provoked mixed reactions at the time:

MALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think people will look at it and say why is it here, what dumbo decided to put it around here.

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a very super sculpture and it certainly should be somewhere, but not in Trafalgar Square. It’s not what Nelson would have wanted to look at [laughs].

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I mean it is shocking, it is quite a shock, but it also does make you think, doesn’t it?

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t think children need to see a pregnant naked woman on display.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The woman depicted in that sculpture was disabled artist, Alison Lapper, who has no arms and paints with her mouth and her feet. Alison was expecting her son, Parys, at the time when the sculpture was being created. Parys sadly died five years ago at the age of 19 following serious mental health problems. Alison Lapper’s latest exhibition, Lost in Parys, tells Parys’ life story. And a new 91Èȱ¬ documentary follows Alison as she launches the exhibition and tells her life story. Alison is with me now. It is such an honour to speak to you, Alison, having followed your story and Parys’ story for over 20 years. Thank you for joining me. How are you doing today?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m all right. I have good days. I still have my really sick sense of humour and my wicked sense of humour and fun. But I’m a grieving mother and there are some days I don’t want to do anything. So, it’s a constant battle with right, I’ve got to get up and do this, I need to work, I need to get on with things. So, yeah, on the whole I’m okay. I have good days, I’m sure like everybody, and I have bad days.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And today’s an okay day?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And today is actually quite a nice day, yeah, I’ve had a nice day today.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We started with the sculpture. I just wanted to ask you, do people still talk to you about the sculpture? How do you feel about the sculpture now?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I love the sculpture. I mean, I, and even at the time people going on about vulgar Trafalgar and it’s disgusting, and she shouldn’t be naked and pregnant and disabled and single parent, you know, it’s just like mind your business. It’s not your business. Someone said, what would Nelson think. Who cares what Nelson thinks? He’s dead! Do you know what I mean? He’s up another 50ft higher than I was, so what does it matter? And people are, oh what has she done to deserve to be on the fourth plinth.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It would still be such a statement if it went up now though.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s so different to anything else that it’s still as different as it was then.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And I think that’s why, for a lot of reasons, it doesn’t go up is because people are still so uncomfortable with the whole concept and with disability. Marc doesn’t look at myself or anybody else that he did the sculptures around as disabled. He says you’re heroes and heroines and that you battle through this and you’ve got a life. And I think that that is a really positive way to look at it. And it’s such a shame that the rest of – I’m not accusing everybody of course – but it would be lovely if we could all just forget about our differences and just be more accepting of each other. Why are disabled people still at the bottom of the pile? And so what if their care needs to be paid for by somebody because they can’t afford it themselves? They have a right to a decent life; that’s all they’re asking for. They’re not asking for gold-plated toilets.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Never seen one of those.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The documentary is called In My Own Words and it really does cover all of your life, from being taken into care, being in residential special school. What did you want the documentary to say? What were the words you wanted to say?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t know. I think because I was so emotionally involved in the exhibition and trying to get that up and working on it, I didn’t really grieve properly or I haven’t for Parys. I realised that I’d kind of just gone back to work and was just going through the motions, and really was almost pretending that it hadn’t happened because it was so horrific. And then, I don’t know, Parys just started to appear in my paintings and on my canvases. I started painting again and it’s like his face just kept coming through, and it didn’t matter what I did or if I tried to cover it up, his face would just be there and he’d just be staring back at me. And I was just like okay, so maybe you want me to do something with this, maybe there is a lot more about this that should be said and talked about than it has been. And I realised that that was where I needed to go with my artwork so that’s what I did. It wasn’t a conscious decision in that respect.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, the exhibition happened organically really. And then there’s the documentary which is all about you really. I mean, there’s loads and loads of lovely Parys in it.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But it’s your life. There was so much from when you were younger on TV talking about sex and about work and about being really busy and having loads of fun:

[Clip]

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Background music: Hot Chocolate, You Sexy Thing] It’s only been the last five, six years that I can actually say I feel sexy. And for a while I met mad with it because I thought, yeah, power, because it’s really one of the very first times I’d actually had power over my own being. So, to actually have this freedom was incredible.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That was a joyous part for me of the documentary to see how independent you were and how sure you were of things, even back in the ‘70s and ‘80s, ‘80s and ‘90s I suppose when those clips were out. So, what did you want the documentary…

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, you were right the first time, ‘70s [laughter].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What did you want people to know about you?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t think I actually wanted them to know about me. I think it’s this whole thing again about disability being represented in a positive way, and we’re not all sitting at home feeling sorry for ourselves not having a life, you know. Most disabled people or differently-able people, whatever the correct word is these days, it was more about you just get on with it. Life is for living and for doing. I don’t know many people that don’t get on with it really. And we were encouraged even in care – although I don’t quite know why they encouraged us because they didn’t think we’d ever be out of care – but it was always you’ve got to learn to do it yourself, you need to be independent. Because in the ‘80s when I did come out of care and whatever there wasn’t any PAs that would come and help you during the day; that wasn’t even thought of, there was no money for that. So, if you wanted to live on your own you had to be able to do absolutely everything for yourself.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you went to university, got a first class degree in fine art. And then you became a single mum from the very start…

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý …to Parys. You talk in the documentary about the constant scrutiny that you faced as a disabled parent. And one of the biggest examples that came out for me was when you talked about how someone had sent a report to social services because your three year-old had pulled you over. I mean, that’s a disabled person’s worst nightmare, isn’t it?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It certainly is. I got accused of sexually abusing Parys because I washed him with my feet. He was a little baby, I mean, how else did they think I was going to keep him clean and wash him and dress him. That was with my feet and with my mouth. I had to do that. And able-bodied people would come in and go, yes we’re here to facilitate you. You’re not; you’re here to spy on me and to see actually where I’m going wrong or where you think I’m going wrong and what I should really be doing. And that report all came out of the fact that Parys put his arms around me and I fell backwards onto a step. He didn’t hurt me, it didn’t hurt him, we were fine, but that whole thing. And I gave him a doughnut because he didn’t want any lunch but I thought it was better that he had a doughnut than nothing to eat when he went to nursery. So, you know.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. Well, why so much scrutiny do you think? And how did you deal with it all?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because I’m disabled, you know, we are useless, helpless, rubbish at everything we do. Society doesn’t realise that I work, that I paid exorbitant amounts of tax; they don’t realise that I drive, own my own home, you know, I work. And it’s like why do we not think that people with disabilities don’t work and that we’re all sitting at home sponging off society? Why?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, when you had a child people felt that it was their right to watch you. But you also put yourself and Parys in the public eye because there was the sculpture first when he was still in your tummy.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And then there was Child Of Our Time which featured you and Parys, and it was a documentary series which followed a selection of children who were born in 2000. How did all that media attention come about? And what kind of impact did it have on your lives?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think to begin with, I mean, there were two reasons. One, I stupidly thought that if it’s out there about my mothering and how I thought I was a pretty good mother on the whole, and that it was all out there on film that nobody could accuse me of doing anything to Parys – as we since know that did actually happen twice. But I thought it was my security blanket to show that I can do this, I can be the best mum I can possibly be for Parys. And probably 120% better than a lot of parents because we have to prove that we can do this. Social services are looking over your shoulder the whole time, waiting for you to make that fatal mistake, or that they think is a fatal mistake. And I just needed to put it out there that Parys was safe with me and that he was my life, I loved him, I still do, more than anything or anybody in the whole world. He was my centre of my universe, and his wellbeing came even before mine. And most mothers will say that.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What was he like? What was his personality? What was he into?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What was he into? Well, when he was younger, I mean he was always very funny – and I’m sure mums always say this – he was very protective of me, particularly as he got older. And I tried to get him to relax about that and that it wasn’t his job to protect me. He was very into his games and all those electronics. I mean I really didn’t understand half of them. He used to say to me, ‘Mum, come and play this with me’, and I’m like, ‘Parys, I haven’t got enough toes on this foot to even press half the buttons, never mind about all of them’.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] I’m having the exact conversations with my boys, ‘Come and play with me’.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I can’t.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. When did you realise that Parys’ mental health was starting to become tricky for him? And was there any sort of trigger or any change?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I realised quite early on that he was quite a sensitive bunny.

[Clip]

MALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Parys scores high on the neuroticism trait.

PARYS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Maths I’m really rubbish. Science I’m rubbish at. Geography I’m rubbish at. PE I’m not really good at that. I like home time and play time and lunchtime, but everything else just sucks.

MALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Alison has noticed his anxiety.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He doesn’t have a very high self-esteem, which I stupidly always thought that I could give him.

PARYS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s great having a famous mum, but the downside is that I don’t have much privacy.

[End of clip]

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What I didn’t realise is the impact that it would have on him at the time. So, you’d be trying to kind of jolly them up, and that’s not actually the right thing to do. But if nobody teaches you this or helps you you’re very on your own. I could see he was struggling. He wouldn’t go to school, he didn’t want to see anybody, he didn’t want to be anywhere.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What do you do rather than jolly them up then? What is the right thing?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t…I wish I was a psychiatrist because maybe I’d know. But you have to understand, you have to be there and love them. I mean, all I could give Parys was my love, that’s all I could really do. I realised I couldn’t make him feel better; I wasn’t capable of doing that from one human being to another because the only person that makes you happy is yourself.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And he couldn’t go to school, was that anxiety?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Anxiety.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But it got really tough for him near the end, didn’t it?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. When his mental health really started to go he got very, very sick. And people don’t see mental health as being sick. Well, you are. He was incapable of even getting himself into a shower, never mind about tidying his room and doing all the other things. They moved him 18 times in his last year of life.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because he was in care, wasn’t he?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He went back. He wasn’t in care until he was about 17 when he had to be sectioned.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And they told me that basically I wouldn’t be able to cope with him – again – and that he would be safer if he was looked after because of his mental health, and by this time drug addiction and what have you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And did you agree with that?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Not at all. I mean, I had PAs working for me, because when I was 42 I started needing PAs for myself. So, obviously we always had people in the house as well. And I had to choose: them, to be able to live my life and get dressed and work and do all the rest of it and pay the bills, or Parys. And they were like, we’re not going to do this if Parys is around because he’s dangerous.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, your PAs said that?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Not in so many words, but it was indicated that he was becoming a danger to me and to other people around because of the drugs. And yeah, at times he was. But at the end of the day – and I always stand by this – he was my son. He shouldn’t have died alone. He was supposed to be being watched and taken care of and, you know, it didn’t happen.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And did he want to be with you, Alison?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Of course he wanted to be with me. He was a real mummy’s boy, and he always used to say ‘Muds – he used to call me Muds – can I come home?’ And I was like, ‘Darling if I didn’t think I was going to lose my PAs I’d have you home in a heartbeat’. But then how would I have got…he wasn’t in any fit state to help me, although he was able-bodied, but he was actually less able than I am, if you like, because of the mental health and, as I say, because of the addiction. He wouldn’t have been able. I wouldn’t have been able to help him in certain ways, but also he wouldn’t have been capable of helping me. Whereas up until his mental health got really bad Parys was really good; he’d sit on the side of my wheelchair and put his legs across my lap sideways with his arm around me, and he’d help. If we were shopping and we needed food, you know, we were a partnership.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, it’s a natural thing that you do.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. People say children shouldn’t look after their disabled parents, but I was already capable of having PAs and looking after myself mostly, and Parys just did the little bits that when we were on our own. And of course we loved that because it was our time.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And he even says in the documentary as part of Child Of Our Time he wanted to have time with you by himself.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, it was really important.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, the exhibition also explores your grief and your sadness at losing Parys. How did you show that? I know you say you maybe haven’t grieved fully even yet, but how did you show it in the exhibition and how are you dealing with it?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I haven’t really dealt with it properly. I mean, I’m just beginning to after five years. And the exhibition for me was a lot about Parys just kept appearing, and I just kept thinking maybe he does want me to say something. Because when he first died, well for the first five years, I just wanted to not be here; I wanted to be with Parys. I know there’s no guarantee that I would be with him, because we don’t know beyond the grave, but I didn’t want to be here. It didn’t feel like it was worthwhile at all. But then as I started painting again, I don’t know, it was almost like Parys was kind of urging me on, come on Muds, you’ve got stuff to say, you need to talk about this.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You put his clothes out.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You did so many things. It’s a very open exhibition. Do you have any advice for parents going through anything similar yet?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You need to do whatever feels right for you as a grieving parent. And whoever says it’s going to be over in four years or it’s all going to feel better, it doesn’t feel better. My son is dead. He is not going to walk through that door any second now, whether I want him to or not. So, at the end of the day I’m here alone now without Parys, and it’s bloody hard. I miss him. I want him to be here. Because if we were doing this about something else he would be with me, I know he would, because even though he’d be 24 now he’d still be like, oh Muds, can I come with you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He said he wanted to be a cameraman as well, a photographer.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, he’d probably be out there through the glass taking photos of you.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Absolutely. He grew up around that. And we just were a good team together.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We mentioned already, you were watching archive footage of yourself and your family as part of the documentary, and one of the pieces of footage that you saw was the interview done with your mother in 2022 when she talked about her feelings when she had you, about lack of contact in the early years:

[Clip]

MOTHER-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I didn’t ask for her to be born like that. And I wish she hadn’t have been [laughs] you know what I mean, god forbid.

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do you think in hindsight things would have been different had she been adopted?

MOTHER-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, yeah, because somebody would’ve loved her, wouldn’t they? Obviously she wasn’t getting it off me.

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý How did that interview affect you? And was it the first time you’d seen it?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I always knew that she struggled to love me, that she struggled to be around me; that’s why I was obviously taken away. She did have a breakdown herself because she was told that she had given birth to a monster and that the monster was going to die. But of course I didn’t, I’m still here. So, I get it. But I don’t understand, having had my own child, I don’t understand how you can’t love a child. But I’ve also now realised that the child could be able-bodied, it could be anything, and there are some mothers, fathers, parents that just can’t deal with that. And it’s probably more to do with them than it is you as the child, if you see what I mean. But when she said, her first words were, ‘Well, I didn’t love her and I didn’t want her anyway’ my jaw, I think you can see it on film, dropped. Because although I already knew that, I’ve heard it before, it’s still a shock because the one person that you were always brought up to believe is that your mother will always love you no matter what. And that’s not true, that is not realistic in this lifetime. For lots of people it isn’t realistic. But I would have stood on my head in the Amazon to make her proud, but there would have been no point.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, because there are a few scenes in the documentary where you’re talking to her on the phone, just having had Parys. And that’s hard to watch as well.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because it’s quibbling over his name.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But one thing you have done is set up the Drug of Art. What is that?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The Drug of Art I set up with a colleague, she’s a friend and we did the documentary together. And basically it’s about introducing young people to art and how it can actually help you go through a mental health journey. I’m not saying it cures it or anything like that, but if you can do something that’s creative and something that is totally yours, we’ve even laughed about going, well if you want to be literally hidden under the stairs in a cupboard to draw or make something creative, you should be able to do that. It should be your time and you should have that freedom to do that. And obviously creating, I don’t think about much when I’m creating because I’m too busy. I’m right in the moment, I’m right there, that’s where I’m at. If I could somehow be like that even more I would be a lot happier because I wouldn’t be thinking about the bills, I wouldn’t be thinking about what I’m doing next week, missing Parys, you know.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’re somewhere else.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s your therapy.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, it’s your safety as well.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. You said at the beginning of the documentary, I love this, art in the strands of your hair, you’re just art, it’s all over you and throughout you. What is the future? What’s next for you artistically and personally as well?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think artistically I am now, obviously having lost my son, I am really interested in this whole the way that we grieve, the way that we don’t talk about it. The one guarantee in life is we’re all going to die, and we don’t talk about that, we don’t discuss it, we don’t think about it particularly. And we need to be a lot more open. Death unfortunately is part of life, and I think as a nation we’re so clammed up about it and illness and mental health, it’s almost a stigma. And the stigma that Parys died from an accidental drug overdose. If it was something else it would have been tragic; but it’s almost like I have to carry a little bit of that shame. I mean, I refuse to do it but…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Society says.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, why should society tell me how to feel about what happened? I carry enough grief as a mother and guilt already, I don’t need society to give me any more.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, you want to explore that a bit more?

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’d love to yeah, really, really explore that and go and see what happens. What does it feel like? What is it like to lose the best thing that ever happened to you and going through that process? I just want to be open about it.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Alison Lapper, In My Own Words is on 91Èȱ¬ iPlayer now. Alison, thank you so much for speaking to me. It’s been an absolute honour.

ALISON-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you. Thank you very much for listening.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý As you heard there, Alison was deeply disturbed by the attitude of social services at the end of Parys’ life. The coroner who investigated his death acknowledged her concerns but said there appeared to be no provision for people who choose not to engage. If you have been affected by any of the subjects discussed in this episode visit the 91Èȱ¬ Action Line for links to organisations offering support.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you for listening to this episode. If you like what you hear please subscribe to us on 91Èȱ¬ Sounds. And get in touch, we’re on email accessall@bbc.co.uk. And we are @91Èȱ¬AccessAll on Instagram and X, formerly known as Twitter. See you soon. Bye.

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