Ellie Simmonds: 'Who actually am I?'

 

07th July 2023

bbc.co.uk/accessall

Access All – episode 60

Presented by Emma Tracey

 

 

EMMA-           It’s Disability Pride Month! This month started in the UK. The ADA came out around 30 years ago in July, so that’s how this become Disability Pride Month. But quite a lot of people don’t quite get or  understand the idea of being proud of their disability, which is how they interpret this month. Now, I’ve got Mik Scarlet here. You support the idea of Pride, don’t you?

MIK-                Oh, absolutely. I mean, I think that you should be proud of being disabled. I’m a big believer in the social model so…

EMMA-           Hang on a second. Social model, you’re not going to be able to get this into a minute, are you, if you start talking about the social model? We have given you a minute…

MIK-                A minute!

EMMA-           …to tell us why…

MIK-                A minute?

EMMA-           A minute, to tell people why everybody should be proud of being disabled. Are you ready,

MIK-                Cool. Yeah.

EMMA-           Go.

MIK-                [Timer ticking down] you should be proud to be disabled because whether you like it or not, that’s what you are. And so there’s no point wasting your life wishing you were someone else. See the positives. See the benefits. See the fact that it gives you strength and confidence and adaptability. See the fact that you want to change the world and make a better tomorrow for other disabled people yet to come. See the fact that you now have an opportunity to realise that life is short, life is precious. So, go out there, seize the day. Don’t let those people that tell you you can’t get in your way. Put them aside and go forth! Fight the good fight! Enjoy the time you have. Revel in your time. It’s precious, it’s wonderful. If you are proud of who you are and what you are you can look forward and seize what you have. But also remember that what you may have been might not be as great as you may have thought.

EMMA-           Ten seconds.

MIK-                At the end of the day, it’s Disability Pride Month. Be proud, be loud, go out there and fight for a better tomorrow…

EMMA-           [Timer rings] Time up!

MIK-                …because that’s what it’s all about.

EMMA-           Hey [claps], happy Disability Pride. That was something else, Mik. Thank you very much.

MIK-                Woo-hoo.

MUSIC-           Theme tune.

EMMA-           This is Access All, the BBC’s disability and mental health podcast. I’m Emma Tracey. Nikki Fox is on her holidays for one more week. And on this week’s episode I’m speaking to Ellie Simmonds about her search for her birth family. She’s got an amazing documentary out at the moment. And we’re also going to be talking about the title of Rosie Jones’ new documentary about online abuse. It’s caused quite a lot of controversy. In the meantime subscribe to Access All wherever you get your podcasts. Press that button. Do it. You can contact us as well, we’re on email [email protected]. Right, let’s do this people.

                         Comedian Rosie Jones has recently announced that she will be presenting a new Channel 4 documentary about the abuse faced online by disabled people. But the title of the programme has sparked a lot of debate amongst disabled people. Now, before I go on let me say this: we have talked a lot on Access All about whether to say the title of the documentary. We’ve had meetings, yes we have, and here’s what we’ve gone with: I’m going to read the title of the documentary once, and after that we’ve all agree to either say the Word or the R-Word. So, if you don’t want to hear this word that’s in the title of the documentary skip forward a few seconds now.

                         Rosie’s documentary has controversially been named Am I A Retard, and in the title the ‘e’ in that word is replaced with a star. Now, Rosie has released a video to explain why Channel 4 ran with the name:

[Clip]

ROSIE-            And I get it. A lot of people will find this word very, very shocking and upsetting. But in my opinion society doesn’t take this word and other ableist forms of language as seriously as any form of abuse for any other minority. So, I said to Channel 4, let’s do it. And then hopefully people will think twice about using the word.

[End of clip]

EMMA-           Now, as you heard at the start of the episode, Mik Scarlet is with us. He’s a friend of the podcast, he’s a TV presenter. Hi Mik.

MIK-                Hello.

EMMA-           Thank you so much for joining us. Also with us is journalist Rachel Charlton-Dailey, and Harry Roche, who has a learning disability and works for Mencap. Hi Harry.

HARRY-          Hi Emma.

EMMA-           Hi, hi Rachel.

RACHEL-        Hello, how are you?

EMMA-           Ready for this discussion. All three will be discussing the anger that this title of the documentary has caused within the disability community. And some of the contributors have even dropped out because of the title. Now, Rosie is sort of seen as the golden girl. Every time we hear her speak lots of us smile. And she has put out a video explaining why she chose this title for the documentary and why Channel 4 chose it. But should she be accepting all responsibility Mik?

MIK-                No. I think that anyone that knows anything about the media knows that however much Rosie is being portrayed as the person that came up with this title, and I envisage it more as a load of people in the production around a table, and Rosie being Rosie with her sardonic wit said, ‘What about calling it this?’ and everyone went, ‘Yeah!’ because they knew that this was going to happen. This is one of those media moments where we see behind the curtain when it covers disability. And I think, I hope that we might see it being a watershed, a moment where we say this is it, we can’t keep doing this, we can’t keep being poked like a bear, and we need disabled people to be more involved in all areas of production so that it’s not just the presenter that gets it in the neck.

EMMA-           Yeah. We don’t know how many disabled people were behind the camera on this documentary, we don’t know that. You did tweet, Mik, that this reminded you of Blue Peter and Joey Deacon. Who was Joey Deacon?

MIK-                Well, when I was very young and none of you were alive, they did an item with what is now called Scope, but then was called The Spastic Society, about a young man called Joey Deacon who was a guy with cerebral palsy.

[Clip]

MALE-             Exactly how we want to help disabled people all over Britain. We’re hoping that our great Blue Peter bring and buy sale will be able to provide four specially built bungalows like this. Joey Deacon is one of the lucky ones. The other…

[End of clip]

MIK-                And it was just a little moment in the programme, a little five-minute item trying to get kids to understand that there were different types of people out there and they had different types of impairment that might make their life different. What it did instead was turn the word [bleep] into the ultimate playground taunt, and along with that made the word Joey become an insult. And because I was the only disabled kid in my school a lot of it was targeted at me. And I remember being upset because I didn’t have cerebral palsy, I’d had cancer, so I was like, no, no. And I do think that there’s an element of that in this programme in that Rosie Jones I know has been called the R-word, but she hasn’t got a learning impairment. So, there’s a kind of upset that you’re calling me a name that isn’t me, so it’s actually a little bit of internalised ableism ourselves. I shouldn’t have been upset about being called the S-word, because it was more important to realise that it was an insult for everybody.

EMMA-           Harry, you have a learning disability. How does the R-word make you feel?

HARRY-          It makes me feel angry. It made me feel like I’m being discriminated. And in the 21st century this word, the R-word, is very old-school now, and it’s time to abolish the R-word out of the English dictionaries. We want the next generations to forget that word, because the R-word is very, very harmful.

EMMA-           Has it been harmful to you, Harry, that word?

HARRY-          Yes.

EMMA-           Have you been called it? What has it done?

HARRY-          Well, I’ve been called the R-word when I was getting assessed when I was three years old by doctors, and an old-fashioned doctor, what my mum told me saying that I was hyperactive and R. But since I’ve become a learning disability campaigner over the years from my experience and seeing the R-word being used in the media it kind of made me think when I’ve learnt that word and it’s very, very bad, and it’s discriminated against people like me who have a learning disability, it needs to stop. Because we can’t encourage the next generations to use the R-word ever, ever again.

EMMA-           Rachel, what’s your experience of the R-word?

RACHEL-        So, I grew up in the time that South Park was huge, the TV show South Park, and that encouraged a lot of people to use that word because it was used a lot in culture and things like that. And to direct insult and to make fun of disabled characters and people who weren’t even disabled, just people who were acting idiotically, and it just became something that was used very casually in the mid-noughties. I think because that gave people licence my worry is that the people who use that word so freely they’re going to see this as a licence to use it again. This isn’t Rosie’s fault. This is not about Rosie. This is not about attacking Rosie. However, when you see someone who is such a high-profile disabled person who has this big platform using the word in their documentary it’s going to give the people who already use it and have no problem using it the licence to use it because they’re going to be like, well Rosie used it in her show, why can’t we use it.

EMMA-           Yeah. What do you think, Mik? Do you think people will stop using the R-word after seeing awful tweets that she’s been sent, seeing how it’s all affected her, will that stop them using the R-word?

MIK-                I don’t. I think the thing is the idea is let’s do something good, but I’m unsure that that’s the right route. I was going to say, I feel so sorry for Rosie because this happened to me when I started my career. I presented a couple of things that were let’s say troublesome to the disabled community, and that I wasn’t told, I wasn’t given any real support. And the backlash was really vociferous and at me.

EMMA-           Rosie talked about making the documentary when she was on this podcast a few months ago, and she said it’s the hardest thing she’s ever done and that it affected her greatly. She actually stayed behind in the studio after the interview finished because of her need to keep talking about it with us two presenters, who are two disabled women, who were probably in it with her and she felt like she could chat to us. And she really, really needed to chat. And this is what she said back then:

[Clip]

ROSIE-            I’m currently filming a documentary about online abuse and ableism. And that has been quite hard for me because a lot of the things that I’ve shut away, marched over, I’ve had to confront. And because of that I’m in therapy. And I would recommend therapy for literally everyone out there.

[End of clip]

RACHEL-        I’m in therapy for the abuse I get online and the way my job treats me as well. I’m not delegitimising any of that, because I really do believe it was a really tough show for her to make. And there many people in that documentary who resisted to it and said they didn’t want to be involved. It could have been so easy as just changing the word, but they instead decided to get rid of so many important voices.

EMMA-           And Harry, some people say we should use the R-word and reclaim it to kind of take the stigma out of it. What do you think?

HARRY-          I know there are films that have bad language, violence, things like that. But I feel like for people with disabilities the R-word should not be used at all, because if we’re going to make an example of negative attitudes don’t use the R-word.

EMMA-           If Channel 4 changes the name of the documentary will that make everything better?

HARRY-          It would be a lot better. Don’t be too discriminated with the R-word, definitely not.

EMMA-           Mik, if they change the name of the documentary would that make everything better? Would you be happy?

MIK-                I mean, I’m not unhappy; I just think it’s really sad. I think it’s a really sad and a missed opportunity. Because I bet the programme is going to be amazing; it’s just been ruined by the fact that the name has been put on there for shock value to get people to talk about it. And I think the programme is too important to waste it with a title like that. I’m going to watch it anyway. I think it will be important. But I just think it deserved better.

EMMA-           Rachel, has the title ruined it for you? Will you still watch it?

RACHEL-        Yeah, I mean, I’ve already seen it. So, it is, it’s a great documentary, it’s a really good documentary. It’s not just the title that’s ruined it; it’s the way other disabled people who dissented to the title. So, I think as well as changing the title there would need to be something said about how we treat disabled people in the community when they’re not just super famous, like Rosie.

EMMA-           Right.

MIK-                AT the end of the day, Rachel, what this proves is we need disabled people, not just in the camera team or in the research teams.

RACHEL-        Exactly.

MIK-                We need them at the editing table, we need them at the commissioning table, we need them as senior producers, serious producers, and people with learning disabilities too, so that then our views are not just occasionally thought about. We need to be shaping television for the future.

EMMA-           And what about you, Harry, finally, do you think this chat was useful? Do you think it will help?

HARRY-          We need people with a learning disability representing all areas of the media, whether it’s journalism, acting behind the scenes, or directors of films.

EMMA-           Well, we’re hearing your voice, Harry, loud and clear. Thank you. Thank you to Harry Roach, to Mik Scarlet and to Rachel Charlton-Dailey for joining me.

MIK-                Bye.

RACHEL-        Lovely to see you.

HARRY-          Thanks, bye.

EMMA-           And I should say that Rosie was very keen to come and talk to us about this; we just could not make the times work for everybody.

                         Quick announcement before we move on: you can see Access All live. Nikki and I will be hosting a live show – I’m not scared at all, it’s going to be great – at the Edinburgh Fringe on the 18th August between 6pm and 7pm. You can get your tickets by going to the BBC Shows and Tours website and looking for Edinburgh tickets. They’re available from 7th July at 10am, and they’re absolutely free, so please do come and see us. We’re very, very, very excited. So, if you’re at the Fringe in Edinburgh this summer please do come and see us.

                         A Paralympics legend and Strictly star is back on our tellies this week with Ellie Simmonds, My Secret Family. In her new documentary we find out that Ellie is adopted, and we get to follow her as she finds out more about her early life and her birth family. It’s absolutely fascinating and very moving. I was a total emotional wreck, Ellie. Ellie Simmonds is here with us. Hello, how are you?

ELLIE-             Hello. Thank you so much for having me on.

EMMA-           I didn’t even know you were adopted. I don’t think anyone did in the public eye, did they?

ELLIE-             No, they didn’t. I’ve kept it definitely to just the close family and friends. I’ve personally always known that. Like from such a young age we’re very much open to that conversation and chatting about it, but in the public eye it’s always been a secret. Because I think I just didn’t want the world to know me, that that was me at that moment. I think especially during my career and being a swimmer and an athlete I didn’t want those distractions because, again, I wanted the swimming to be the main focus and see me as a swimmer and be a professional athlete. I think when you are an athlete you’ve definitely got those tunnel visions on, you’re very much focused on your career and stuff, and I didn’t know the situation if my birth parents knew who I was or an anything like that. So, I wanted to do it when it was the right time for me, and during my swimming career it just wasn’t the right time.

EMMA-           So, why is now the right time?

ELLIE-             I think there are many factors. Swimming was my life, it was a massive part of me, and when I retired I was like, who actually am I. I wanted to find out more. And I’m a person who loves to ask questions and find out more things. It was just the perfect time in a way. And I think I’ve met people along, not just before this journey now, but before who have left it too late. And I thought I’m 27, 28 and maybe this is the right time to find out more before I start this next chapter of life, like let’s find out actually who am I. I might not get the answers but at least let’s start the journey, let’s start finding out and see if my questions can have those answers.

EMMA-           Yeah. And then you let a camera follow you while you did it.

ELLIE-             Yeah, I did. Why I wanted to broadcast it and why I wanted it to be a documentary is just to open that conversation again. I’ve always known my adoption and my birth mother made the decision, not just because of my disability, other factors. But because I was a disabled person children with a disability are seen as harder to place into families. And I followed some social workers last year in Essex and they showed me the database and say, give an example, there’s 1,000 families looking for a child, when they say that they’re happy to have a disabled child it goes from like 1,000 to eight. And that’s massive, 1,000 families to eight families are happy and willing to have a disabled child. That’s big, big number and it needs to change and the acceptance. Yes, we’re talking about disability more, and yes, we’re seeing in TV stuff and the acceptance is getting better; but people with a disability need to be seen the same as a non-disabled child and it needs to be, the language and all that needs to change. And I feel like hopefully with this documentary it will a shed a light to that.

EMMA-           Can I ask you about the beginning of your life? You were put up for adoption quite quickly after birth, is that right?

ELLIE-             Yeah, I was. I was adopted, well given up to put into foster at a very young age. And it was really interesting to see what the social workers wrote and stuff about you.

EMMA-           What did they write?

ELLIE-             Just things like the interactions between my mum and me and them, and what my birth mother’s mannerisms were like. And again, she was going through a lot. And especially she’s given birth and found out I had a disability and had dwarfism and all those types of things. And again, the language that was used when an individual gave her a sheet saying all the things to have a child with dwarfism. So, it said things like probably job wise the circus, and mentally I wouldn’t be right, I’d probably be bullied.

EMMA-           And that’s in the ‘90s, that’s not in the ‘60s.

ELLIE-             Yeah, gosh, that is 28 years ago. It’s not a long time ago.

EMMA-           It can’t have helped her.

ELLIE-             No, definitely not. I’ve not had a child so I don’t know what it’s like, but I feel like as a woman you’re very vulnerable, aren’t you, you’re emotional, you’ve just gone birth and all that, it brings out a lot. And then to be on your own and not have the support of your family, to be given the news in a negative way and not to be given the positiveness what it’s like to have a child with dwarfism, it’s tough. It must be seriously tough to have this information. And I think back then there wasn’t the likes of Google or the searches.

EMMA-           Then you went into foster care first, and you recently got into contact with the family of the people who fostered you originally.

ELLIE-             During this whole journey the start I connected with my foster siblings, which was quite an emotional call because, I know I said it at the start, but throughout this journey you sometimes leave it too late, and I did, my foster mother passed away. But she always knew who I was and wanted to connect and stuff.

[Clip]

SISTER-          At the time you were crying all the time because for the first few weeks you were such a sad little girl. And my mum just kept on spending time with you, just having your supper, kept loving you and nursing you until you were fine. And when you went to the Olympics she said to us, ‘I’m absolutely positive that’s Ellie who I fostered’.

ELLIE-             Oh really?

SISTER-          Because she said I remember your adoptive parents had a swimming pool, didn’t they?

ELLIE-             Hmm, yeah [voice breaking].

SISTER-          She said, ‘I’m absolutely positive, and I can’t believe how much she’s achieved. That is absolutely amazing’ because she said you couldn’t have gone to a better family.

ELLIE-             Yeah. [Crying] I’m sorry, I’m getting a bit emotional.

[End of clip]

EMMA-           I honestly felt like I was on an emotional journey with you. You’re such a determined person and you’re known as being such a determined person, and you started the journey all business and all like, I need to know the facts, I need to know this, this, what’s next, what do we do next. And then all emotions, you know, it got real and you spoke. I felt like that was the moment that it got really, really real for you.

ELLIE-             Not just that call but meeting Jono as well really, really helped.

EMMA-           So, Jono has got a facial disfigurement and he was adopted as well?

ELLIE-             Yes, he was. He’s the most amazing man and he helps so many people who have Treacher Collins syndrome. Such a really, really nice gentleman and helps create change and stuff. And I was very much like just naïve, very much like just going to go with the journey, and not really taking the impact that it might have mentally. At the start I was like I was very much wanted to meet my sister. I was like, can I actually meet my mum to start off with. But then when I met him and stuff I was like, I need to slow down a bit, but I also need to take things in a bit more and to actually think about it. It is a tough, tough journey. I’m sure there are lots of people listening to this who are all going to watch the documentary and have done the journey, but also may be thinking about it too, like it’s a lot harder than what you think it’s going to be. It brings out a lot of emotions and stuff that you didn’t know about yourself.

EMMA-           And what did you learn about yourself?

ELLIE-             Maybe in the sense that the whole adoption has hit me a bit harder than I thought it would have. And also finding out more about my family, because you know when you go to the doctors people always say what’s your medical history, and I’ve never been able to say, oh I’ve got this, I’ve got that, because I don’t know. I don’t know my medical history in my family.

[Clip]

ELLIE-             I’m going to tell her that when I read the adoption notes it says you love being outdoors and into horses. And it’s so funny because I love them. I know from the photos that I have from a child you had curly hair. Do you still have curly hair? [Laughs] I just want to know.

[End of clip]

ELLIE-             I’ve got to have those answers. And I’m very lucky yeah, that my birth mum and birth family have been very open to it and been able to chat and to talk and to start forming that relationship.

EMMA-           Yeah, spoiler alert, it’s been all over the papers: you did meet your birth mum in the end. And you protected her identity.

ELLIE-             Yeah, I don’t want any bad to happen to her. And again, there are people out there that might see what she did in a negative way and stuff, and it’s not at all. She made that decision because she made that decision, and I want to protect her and my family and parents and loved ones as much as I can do. Because there are some people out there that yeah, can say horrible things.

EMMA-           Absolutely.

ELLIE-             And nobody deserves that.

EMMA-           Will you be staying in touch with your birth mum and family?

ELLIE-             I’m going to take things slowly because it’s been a very emotional journey, which I’m sure you see, you see in the doc. I cry a lot and it was tough and things. Hopefully we do continue a relationship and just yeah, I’ve still got my parents who support me so much and my loved ones and things. But just take it as slow as possible.

EMMA-           I know you’ve got a great big family of siblings, some of who are disabled, and supportive parents. And I wanted to ask you loads more about that but I got a bit excited and distracted by everything else. But they sound like a great bunch, a noisy bunch.

ELLIE-             Oh yeah, it’s fab literally. Christmastime, birthdays, all that, it’s the best time to go to my parents and all be together.

EMMA-           And that’s your family you grew up with, your adopted family?

ELLIE-             Yeah, that is my family.

EMMA-           The last time you were on the podcast you said you were about to start renovating a house with your other half, as you call him, Matt. How’s that going? Have you even got around to it yet?

ELLIE-             Oh no, it’s good. We’ve got a new bathroom, we’ve got back doors, we’ve got a fence, so it’s starting to come together. But there’s a lot more work we need to do. So, if anybody’s out there and could help, because again, it is time, it’s so tough. But yeah, it’s nice to have a home and to have a home to develop.

EMMA-           And to be able to reach stuff.

ELLIE-             Yeah. And then we’re going to make the kitchen eventually, stools are all around our house, they take over, so eventually we’re going to lower the kitchen and the light switches and things so that it’s a house made for us.

EMMA-           Ellie, thank you so much for talking to me.

ELLIE-             Thank you so much for having me on.

EMMA-           Ellie Simmonds, My Secret Family is available to watch on ITVX. We will be back next week. Nikki will be back with me, which I’m very excited about. In the meantime you can get in contact with us in all the usual ways: email [email protected], Twitter, tweet @BBCAccessAll, and you can send us a WhatsApp either a voice message or a text message, and our number is 0330 123 9480. See you next week. Bye.

MUSIC-           Theme music.

EMMA-           Are you still listening? I thought because it’s been such a serious show today that I would let you hear what happens sometimes between sections. So, you remember Harry from earlier? He was glad that we recorded at the time that we did because it meant that he could pay his fishmonger at the same time he does every week. And this sparked a conversation about fish. It’s a load of codswallop to be honest, but it’s a bit of fun. See you next week.

[Clip]

EMMA-           And Harry, you were glad that this was at 11:40 because you had something very important to do at 11:30, isn’t that right?

HARRY-          Well, just in time, the fishmonger arrived [laughter].

EMMA-           So, you had to pay your fishmonger, is that right?

HARRY-          Yeah. So, they deliver the fish and then we have to pay them at the door, because we have our freshly home-made, fresh fish delivered to us by a fishmonger.

EMMA-           Oh nice.

MIK-                What fish, Harry? Get you!

RACHEL-        What fish have had delivered is what I want to know?

HARRY-          What fish? It was my mum that delivered it actually. I don’t…I can’t…I think it might be prawns.

RACHEL-        Oh, I bloody love prawns.

EMMA-           Yeah, me too. Do you cook it yourself or does your mum cook it, Harry?

HARRY-          Well, she cooks a very good seafood linguine, that’s why she wanted to get the prawns ready.

EMMA-           Mik, your thoughts on fish?

MIK-                I’m a vegetarian. I don’t eat anything with a face. I hated fish even when I ate meat.

EMMA-           Harry, have you had the same fishmonger for lots and lots of years then?

HARRY-          Quite a few years, yeah.

EMMA-           Does he look like a fishmonger?

HARRY-          Yeah, with his apron and his overalls.

RACHEL-        I was going to ask, does he wear an apron? [Laughs]

MIK-                I was going to say does he smell like a fishmonger, because that’s my problem.

RACHEL-        Well, my dad works down the ship port in Sunderland and he does, he comes home absolutely reeking [laughs].

EMMA-           Well, you know, a fish van stops outside my house twice a week and blows the horn with a very specific tone that everybody knows it’s the fish van, and people go out and get their fish.

MIK-                Where do you lot all live? Down in Camden there’s no fish man, there’s no fish market. We have to go to Sainsbury like most people.

RACHEL-        It’s very different from the northeast, like [laughter].

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