Woman's Hour - Dame Meera Syal, Breast cancer drugs, Black child Down syndrome

Episode Date: September 17, 2026

Dame Meera Syal is a multi-award winning writer and actor, and a name and face very familiar to many of us having graced our screens for decades now. She's just published her first memoir and is also currently on stage in The Children at the Lyric Hammersmith Theatre in London. With her trademark warmth and humour she joins Anita Rani in the studio.A breakthrough breast cancer drug, Enhertu, has been approved for NHS use in England. Charities and patients have campaigned for it to be more widely available since 2024, when the National Institute for Health and Care Excellence (NICE) said Enhertu was not good value for money. The drug can give patients almost seven extra months to live on average - with some living up to three years longer. Women in Scotland have had access to the drug on the NHS since 2023, and it is available in 26 other European countries. Anita is joined by campaigner Sophie Blake who has stage 4 breast cancer and Dr Simon Vincent, Chief Scientific Officer at Breast Cancer Now.In our recent series of features about Daddy Issues, reporter Jo Morris has been speaking to listeners exploring the impact of paternal absence. Here, Anita is joined by Emma and her father Arthur, who share their story. Emma bonded with her father over sport, as she was a competitive swimmer, and Arthur was a British four time World Powerlifting Champion. But then Arthur became addicted to drugs and left the family home. They discuss the impact of paternal absence and describe how through their Christian faith they came to forgiveness and reconciliation. Founded two years ago by four Black SEND mothers, the Black Child Down Syndrome Project was created to address the lack of representation and support for Black families raising children with Down Syndrome. Earlier this year, their Reflecting Radiance exhibition in London showcased portraits of children supported by the project. Photographed by photographer and Oscar-nominated filmmaker Misan Harriman, the exhibition featured a takeover of the Piccadilly Lights. The organisation has since been nominated for a BBC Make a Difference Award and a National Diversity Award. Co-founders Danise Bartlett-Grant and Oneness Sankara join Anita.And Bonnie Greer, the playwright, novelist and cultural commentator, who died this week, is remembered. Presenter: Anita Rani Producer: Corinna Jones

This BBC podcast is supported by ads outside the UK. Get more with BBC podcasts, wherever you listen. Be the first to listen to your favourite shows, like Evil Genius, Good, Bad Billionaire, and You're Dead to Me, with a subscription to BBC Podcasts premium on Apple Podcasts. You can also enjoy a range of our podcasts ad-free with an Amazon music subscription. Hello, I'm Anita Rani, and welcome to Woman's Hour from BBC Radio 4. morning and welcome to the program, Dame Mira Sayal. She's a writer, actor, comedian, jazz singer. She's currently on stage at the lyric in Hammersmith and her brilliant memoir, Vigilante, is out now.

And Mira is here to talk about a life full of aunties as well as other things. And if you'd like to share a story about an auntie who has meant a lot to you in your life, whether she was rebellious, judgmental, kind, stern, funny, tell us about your auntie and they don't have to be. to be a blood relative, get in touch in the usual way. The text number 877-844. A breakthrough breast cancer drug has been approved for NHS use in England. We'll hear about the impact of that news. We continue our series on daddy issues. Today I'll be talking to a father and daughter whose relationship has overcome the father's drug addiction. And they've been recognized by the BBC Make a Difference Awards. I'll be speaking to two of the founders of the

Black Child Down syndrome project, which was set up. up to support families and challenge the lack of representation. And we've dipped into the archive to bring you a reminder of British American playwright, commentator and novelist Bonnie Greer, who's died aged 77. So many ways for you to get in touch. Remember, you can comment on anything you'd like to on the program if you have a story or an opinion. The text number, as I said, is 844844.

You can get involved in most spot speakers now by saying, Alexa, ask BBC sounds to send a comment. You can also contact us on social media. It's at BBC Woman's Hour. Email us by going to our website or WhatsApp the program on 0300-100-444-44. The text number once again 84844. But first, Dame Miris Sayal is a name that will be familiar to all of you, having graced our screens for decades now. The actor and comedian rose to prominence as one of the team that created

and performed in television's Goodness Gracious Me and later seven series of the Kamars at number 42. But Dame Mirror is also a multi-award-winning novelist and screenwriter who's just published her first memoir, Vigilante. And as if that wasn't enough, she's currently performing on stage as Hazel in the Children at the Lyric Hammersmith Theatre in London. And I'm delighted to say,

Mira is with us now in the Woman's Hour studio. Welcome. Thank you, darling. Good morning. Good morning. I'm going to start by saying congratulations on all of it. There's so much. talk to you about but first of all you did two shows yesterday you're on stage tonight

promoting the brilliant memoir how are your energy levels not well i've just had a vanilla latte coffee thank you very much so that's helped um no do you know what it's you get into the groove it's um i love both projects and passionate about the play i'm doing delighted my memoirs out so you just take your bits and buckle up and go thank you very much for listening that's the attitude we're going to get to the memoir i think we should start by talking about the play. Tell us about the premise and who Hazel is. Oh gosh, what an amazing play by Lucy Kirkwood. This is its 10-year anniversary. It's about three retired nuclear scientists who used to be best friends who meet up after a long period in the wake of an unnamed environmental disaster. Secrets emerge. And really,

the play is about the climate change and its consequences and our responsibility. But it's very funny, very dark. If you like Succession, you will love it. It's a real character piece. And I'm surrounded by two brilliant actors, Kerry Fox and Declan Conlon. How much fun are you having? It's extraordinary. And it's also just three people in it and 90 minutes straight through. So it's an intense arc and the audience are with us every step of the way. I really like that the repeated idea is sort of leave the place cleaner than you find it. Right. Deceptively simple, but a really powerful statement.

Right. So I don't want to give away too much about the plot, but these three people used to work in a power station where the accident has happened, and they are all in some way, at least morally responsible, if not physically responsible, but are they going to face up to what we all need to do? What does being on stage mean to you?

It's been a couple of years since you were playing Queenie in the brilliant at upper air full of ashes at the National Theatre, and that was 2024. Is it good to be back on stage? Yeah, it's wonderful. It's where I started. It's where my heart is. It's where you learn everything you need to learn as an actor, I think. But it's also that thrill of live performance and that connection with the audience. So that never really leaves you, I think. I saw that you said that you're now in your 60s and you've realised that this career is a marathon, not a sprint. And part of that is living through the dead zone. What did you mean by that? Oh, well, you know, my agent who is also an older woman, told me that she used to have to tell her female clients when they hit 50 that that was pretty much it. You know, get your slippers out and I'll give you a call when you're about 70 and the batty grandma parts come up.

And I don't think it's that bad anymore. She said that is changing, but obviously it's still not equal. And you still find yourself playing the wives, the mothers of actors. and used to play their wives 10 years ago and now you're playing their mum and what happened in that dead zone? What outcome that we're not equivalent anymore? So there's still some weird things that happen in casting

and I would say the span of roles for older women has improved but we still tend to be able to point to the exceptions rather than the rules. We have some way to go still. Yeah and you I mean you write your own roles often because they don't exist in that landscape anyway but also you did play the batty old grandma. You were in your 30s.

Yes, I did, I did. So I feel like I've done that already. That was in the Kamaz at number 42. And then in another twist, you married the person who was playing your grandson. I know, my therapist really enjoyed talking through that one with me. Yep. No surprises, though.

You know, it's what I'm going to look like. There you go. Now, one of the themes in the children is legacy and what you leave behind for the next generation. A mirror that brings me to your brilliant memoir, vigilante it is for me this I mean it's poignant it's funny it's beautiful it tells your story but it also tells the story of Britain through a South Asian lens the names of the change makers the backdrop the really important backdrop of racism discrimination that

what that takes and what it takes to be the only person in the room for me this is a reference book you've honored so many people thank you and it's funny as I said and you made me cry and you've pulled no punches and I'm just going to read what I says, by me on the back of us. By you? It says she's an evil genius who can make you cry while wetting your pants with laughter. That's one of the best quotes I've ever had, by the way. Thank you. And it's a fact. The evil genius bit. So let's start with the title, Vigilante. Ah, well, my daughter came up with that. Rather genius, no. And she said, Mom, it's who you are. That's the two sides of you. There's the auntie bit. He says, are you wearing your vest?

If you eat enough? And then there's the battling warrior bit, which just, you know, rejects a lot of the old sort of cliches about what it is to be a well-behaved woman and does her own thing. And yet I think we all, as women, carry those two sides with us anyway. It's a constant dance, isn't it, between what do I keep that my mother taught me? Yeah. And what do I throw away that doesn't serve me anymore? And it's all about evolving womanhood, I suppose, and your choices and the choices you want to live to your daughter. But I guess that's why vigilante seemed to be such a perfect title.

And also because the aunties, that group of women, those matriarchs that communally brought me up with my mum, were so influential in my life because they were the role models I had. And some of them were not good role models. Some of them were repressive. Some of them were backward. Some of them weren't controlling. Some of them were amazing. But like reviews, you always remember the bad ones, right? And so I had very mixed messages when I was growing up.

I had my parents who kind of supported me being a freaky rebel who wanted to do arts. And then I had this vast collection of aunties who said I was a misfit and I was bringing disrespect on the culture and that good Indian girls didn't do such things. And it was only when I became an auntie myself and I got older that I realised

that a lot of that controlling behaviour actually came from fear and from their own missed opportunities. These incredible women that didn't get the choices I got. I don't think it's any coincidence that in Margaret Atwood's The Handmaid's Tale, the most feared controlling people in that book are called the aunts. And they are the other women that do the men's work for them, that police the younger women. And in a way, I had to learn to forgive those aunties and understand them

and understand that what they didn't have was choice. And that's what we should all be fighting for for ourselves and our daughters is choice. Yeah, and I think that is really powerful what you just said, to be able to forgive those aunties and recognise that they were doing it through fear. But you grew up in a very rural part of Britain when you were very little. Yes. So there weren't that many antisar around, actually, which is unusual. Right. So I think that really helped me develop a kind of rebel wandering spirit.

I was kind of feral, really. I'd left the house on my bike in the morning. Tomboy? Total tomboy, scabby knees. The first chapter of the memoir is called Don't Sit with Your Legs, apart because that was what was said to me throughout my childhood. And yes, I had an enormous amount of freedom, physical freedom, and that developed my spiritual freedom, I think, whereas a lot of my South Asian friends lived amongst the aunties

and they were policed in a way that I wasn't. You say that you have a genetic predisposition to nonconformity. Yeah. Where does that come from? Well, as I've discovered through tales from my family and also doing who do you think you both my grandfathers were freedom fighters. My parents came from different religious backgrounds and eloped to get married. So I think some of it is genetic.

I was given rebel blood. And I think the rest of it was nurture, actually, growing up in a rural environment, often being the only one in the room. But I think that develops an armour and an innate ability to code switch. When you are the only one, you're always on high alert. You're always seeing how can I fit in. I literally has a different accent inside and outside the house. Inside the, it was like passport control, outside the house.

I thought like this was a midland wench. You're going down the park. I literally crossed the threshold. Hello, mummy. Hello, daddy. I love maths. Yes, I do want to be a doctor. And you go, boy, I'm literally schizophrenic, but no wonder I became an actor.

Well, what actually does that do when you are able to code switch, as you say, and you have to sort of analyze who you are and your place in the world. from a very young age. Right. And this is the gift of being an outsider. It's very easy to feel, I don't belong anywhere and that's awful. But actually, it's liberating

because you are forced to question all the time. What am I doing here? What's my purpose? Why am I here? Which is why it's so important that you know your history, right? When people say to you as a child on a daily basis, why don't you go back to where you come from,

you've got to know why you're here. You've got to know what brought you here. You've got to know that I am here because you were there, right? So all of these things feed into your sense of identity. And actually, even though it's hard when you're a kid, because all you want to do is fit in and even harder when you're a teenager, I learned to embrace what made me different because I thought this is my superpower. And I have to say the most interesting people I come across in life

with the people that felt they didn't fit in anywhere because it forced them to question and see the bigger picture. And ultimately, when you see the bigger picture, I think you become more compassionate. Yeah. You have empathy for everyone that doesn't fit in. Well, spoiler. Mirror didn't become a doctor. A lot of lives have been saved, can I just say.

Went to Manchester to study English and drama. And that's where at university you became, your political awareness really kind of became quite heightened. And after years of being the only one, you wrote your one woman show. And it was like your rage coming out on the page. Yes. I wrote, in fact, Jackie Shapiro, my dear friend and fellow. student wrote it and I improvised and she wrote down everything I was improvising. It was very much a joint thing. But yes, this little student show, which was my swan song to acting because I was, I wasn't going to go into the profession. Having spent four years at Manchester University doing

English and drama and playing every role going, I looked at what was out there and thought, there's nobody that looks like me. Where am I going to get a job? How am I going to work? And the immigrant part of me that wanted security and safety went, nope, that's not for me. I had a whole life plan, an MA plays, then the teacher training plays. I was going to go off and work with children in some capacity through drama and psychotherapy. That was my interests. And I thought, I'll do my swan song, this is how I feel, put it out there, and then I'll go and do my sensible life. Marry a pharmacist, I have 2.4 kids, whatever.

And this little show took off, went to the National Student Drama Festival, ended up at Edinburgh. And two weeks before I was due to start my MA, in walk, Carol Hayman, a director from the Royal Court, and said, do you want a job with an equity card for nine months? And I went, all right. And it was like the universe was going, don't be scared. Yeah. But try. We're making it really easy for you.

But I also have to say, as I tell my kids, that was lucky, but I was ready for the luck when it came knocking. Because if I hadn't created the show, she wouldn't have seen you. Right. So it's a mixture of two things, yeah. I mean, when you sit down to write a memoir, I imagine you have to think about all the things and really consider the things you put in and leave out. And you did share a story from the 80s about a sexual assault. Writing about something and talking about something are two very different things. So I want to just check that you are okay talking about it.

Yes. Yeah. I mean, I put it in the book for a reason. And I did think about it a long time and passed it by the family and friends because I didn't want it to be prurient. I didn't want it to be sensationalist. And it's in fact only two pages in the book, but a very formative event. because it happened with someone I trusted who was older. It happened at a time where I was out of work, homeless, and on the verge of giving up. I'd had a brilliant start, and then it all suddenly went very quiet.

And I could have so easily given up because it shakes your foundations. And what it led me to do is find my tribe. I ended up joining an Asian woman's writers group, where I'm about a bunch of aunties and other women that were, or writing stuff. And I began to write properly. And I funneled all that rage and disappointment and anger into writing and into wanting to create women that roared.

And also, I joined New Asian Women's Project. I met women from Southall Black Sisters. I became politicised because those issues about sexual and domestic violence now were very real for me. I wanted to make a difference. And so in all kinds of... kinds of ways it changed the course of my life. And I wanted to write to show that this doesn't have to define you, that it can spur you on to become stronger. And also in solidarity with all

the other women to whom it happened and who never reported it either. Because the shocker for me was when I talked about writing about this with a bunch of women, my generation or 20 of us, 15 of them said, oh yeah, that happened to me. And I never told any. And I think it's removing the stigma because we carry the shame with us. And you have to say very loudly, it wasn't your fault. Absolutely. And actually you will grow and you can rise from this like a phoenix. It doesn't have to define you.

And, you know, you mentioned there that you found your tribe and you became politicised. But also I feel like through the work that you were doing in drama and comedy, you also found your tribe. Oh, totally. And then that brought us goodness gracious me. Yes. Absolute game changer for a whole generation. It was like coming home. I mean, you can imagine you're the weird kid who's giggling in a corner at stuff that nobody else finds funny.

Isn't it funny? We've all got cling film around the remote control. Anyone else's parents got a whole cupboard full of Tupperware? Oh, just me. For years, that's the stuff I was giggling to on my own. And then suddenly you find a bunch of people that not only get the shorthand, but make better jokes, make it funny, or run with it. I can't describe to you. All the misfits found each other.

That was incredible. And for not just a generation of South Asians, but the whole country, you kind of changed the game in so many ways. I found it really interesting that you said when you did the live tour, that women would flock to all the men, but the men were terrified of you and Nina.

Yes. So interesting. That's when I realized that, oh, yes, funny men are considered sexy. Funny women just scare, scare men. which was really interesting. But I guess women with a sense of humor are seen as subversative, are seen as powerful.

And that can only be a good thing, really. You've talked, the book is about, you know, you and being an outsider and all these experiences from your childhood and kind of breaking through into this landscape that really nobody like you existed before. But then you became a dame. Yeah. Well, actually, it started with you getting your MBE,

which your mum brilliantly called an... M.E.B. Midlands electricity borders Every Midlander knows, yeah Was it, was it of it, did you always want to, Did you know that you would say yes? No, that was quite a conflicting decision actually when that was 97

When I was asked about the MBE And that was the same year Coincidentally that I had taken my father back To the house he fled in 1947 In Lahore My father went through a partition As many millions of others did And found him

at the age of 13 in a refugee camp with his seven brothers and sisters and it was a hugely traumatic and part of his life and a direct result of empire and then here I was being offered a medal with empire written on it as you can imagine and it was actually my parents reaction to this that changed my mind about it for them it was some kind of validation of what they'd gone through of their journey here of the risk they took to give better opportunities for their children. I mean, I think I suggest in the book it maybe should be called the Empire Strikes Back Medal because I think that's how they felt about it, that for them, it was one generation

on. Yeah. We can stand here in the places that didn't allow us. So for them, I think I accepted it. Yes. Well, Dame Miracale, it is such a pleasure to speak to you, as always. As always. As always. Congratulations on all of it.

And we cannot wait to see what comes next. Thank you so much for having me. Thank you. And vigilante is available now. And the children continues at the Lyric Theatre Hammersmith in London until the 3rd of October. Thank you. 844 is the text number. Now, from today, patients in England with a specific type of incurable breast cancer can now access NR2,

a life-extending drug on the NHS. Breast cancer is the most common type of cancer in women in the UK, but anyone can get breast cancer with an estimated nearly 60,000 new cases every year, according to Cancer Research UK. Charities and patients have campaigned for it to be more widely available since 2024 when the National Institute for Health and Care Excellence, Nice, said Anirsu was not good value for money. Enirtu can give patients almost seven extra months to live on average,

with some living up to three years longer. Women in Scotland have had access to the drug on the NHS since 2023 and it's available in 26 other European countries. Well, I'm joined now by campaigner Sophie Blake, who has Stage 4 Breast Cancer and Dr Simon Vincent's Chief Scientific Officer at Breast Cancer Now. Welcome to both of you. Sophie, I'll come to you first. What's your reaction?

I cannot tell you the relief. It's been really overwhelming, actually, since the news, came out. I'm part of a lot of the campaign groups and WhatsApp groups online and everybody is just, it's a real kind of overwhelming sense of emotions right now because it's been an exhausting couple of years of campaigning to have access to this drug, but we also feel incredibly heartbroken and deep sorrow for all the women who were part of our campaign who never got to have access to this drug. So it's a very bittersweet victory for us today. What does it mean for women with advanced breast cancer?

It gives us extra time and that's all we want. Her too low, which I have, only has a limited line amount of treatments. So when you know, when you've been diagnosed with a cancer that has a three to five year medium lifespan, when you know that there was a drug available that 26 other countries had approved, including in Scotland, but we were denied it. It was just absolutely devastating. it was heartbreaking. We felt like we weren't valued, that our lives weren't valued, we were told we weren't cost-effective. And we do everything we can to live the fullest lives

as we can and to take every grueling drug we possibly can to have extra time. So in Hurt, too, was given a standard ovation when it came out. My oncologist said to me, there's no way nice will ever turn this drug down because of how absolutely incredible the trials were. He was flabbergasted. we were flabbergasted. Nobody could understand how this, you know, unbelievable new drug was going to be denied to us because every extra day, week, month, moment, year gives us precious extra time with our loved ones

and our families and friends. So it wasn't just us this impacted. It was everybody. How do you feel about the current process of drugs being approved for use on the NHS? us. I've learned so much during this campaign. The worst thing I think that happened to us, I was diagnosed in 2022 in that very same year. That was when Nice decided to change how they graded our cancer. So my cancer went from being severe, meaning that there was more money in the

kitty, which hadn't even been expanded in over 20 years, to suddenly being downgraded on a severity modified to moderate severe, meaning that a lot of the money was removed and bearing in mind it hadn't even been updated in 20 years, we lost funding for all the new drugs were coming out. So the rate of inflation was not comparable to the latest prices of all the drugs coming through. So not only were we trying to campaign for these life-extending drugs, we were then trying to campaign for nice to put our cancer back to severe because of grade a cancer that's the biggest killer of women under 60 in this country. 31 women a day die of metatastic breast cancer and make it moderate severe. So it's been a battle that we've had to take on in so many different

areas. The drug companies obviously then got to the point where they were even talking about not introducing new drugs to nice because they were saying what was the point going to be if they were going to be denied it. So for us, not only were we not going to get in her to, but every new life-extending drug that become available to finally make our cancer hopefully chronic, which is what everybody would like it to be. We have a statement from NICE who say we're pleased that a commercial solution alongside recent changes to NICE's cost-effectiveness thresholds and the use of new methods for assessing quality of life has meant this treatment can now be

provided on the NHS. However, we know this decision comes too late for many families and our thoughts are with them today. Our role is important in ensuring NHS spending. on new medicines reflects the benefits they deliver while protecting valuable health resources for the other essential patient services. Nice it is available to recommend 90% of all treatments it appraises. I'm going to bring Dr. Simon Vincent in now. Simon, we've heard about what this drug means to women like Sophie who need it.

But how does it actually work? Why is it so effective? So Enhertou is based on an existing drug called Trostizumab, Heseptin, many women and men who are diagnosed with her two positive breast cancer will have that drug. And what then her to does is it adds onto that some molecules of chemotherapy. So the drug targets those cells which have her two on the surface. And just like Trasthusinabatin itself is a way of killing those cancer cells. But then on top of that, it also brings in that chemotherapy,

which is another way of killing the cancer cells. of the surrounding cells as well, which may be cancerous but may not be targeted. So it has this double effect. And what that means is that whereas things like Trastusinab are only going to be useful in people who have really high levels of her two in their cells, Hurtube positive, we know that in Hurt2 works with those like Sophie, who have far lower amounts of Hurt2 on the surface of their cells, because it is still effective, because it is having this double killing effect of bringing in the chemotherapy, as well. What types of breast cancer does it work on? Because it's not effective on all.

No, it's effective on those that are her too positive. So those diagnosed with breast cancer will undergo tests which look for whether the cancer is sensitive to hormones. That's ER positive or PR positive and whether it's sensitive, whether it has hereto on the surface of the cells that are too positive. And why is it so expensive? Drugs are expensive in the main because the development process is long and expensive and running the trials for these is hugely expensive. And that cost is borne by the drugs companies. And the drugs companies will want to recoup their costs, not just for the drugs that are successful, but also all those ones that are developed but not tested.

So that is why drugs are expensive. But we think, as Sophie has described so eloquently, we think that the processes for balancing all of those costs and deciding whether something is cost-effective is not right. And as Sophie has said, the change a few years ago that downgraded things like metastatic breast cancer at the end of your life, that downgraded that to not so severe, has really meant that women in Sophie's position that have not been able to access these drugs.

It's not been seen as cost-effective. So yes, we know drugs are expensive, but nice should be set up to make sure that innovative drugs like this, that are at the cutting edge, the first in their class to come through, that people have access to these drugs in spite of the cost. So let's just very quickly look at more innovation then. What are we looking at with breast cancer treatment over the next few years? Oh, that's a great thing to think about.

I think there are some really interesting stories coming through. One of the things that we're looking at a lot is the way that the body's own immune system can be used to treat breast cancer. For many years, we thought the immune system was, not involved in treating cancer because cancer cells look so similar to the normal cells of the body. We think about the immune system fighting off viruses and bacteria, things that are foreign to the body. Turns out that's wrong. It turns out that actually the immune system can be triggered so that it fights off cancer cells and there are many, many treatments coming through now

which make use of that. Increasingly, it may even be the opportunities to have vaccines against cancer as well. This is still a little way off, but certainly we've got immune therapy. which are being used in breast cancer now reasonably regularly in some sorts of breast cancer. Well, I'd like to thank you both for speaking to me this morning. And if this conversation has prompted any concerns or questions for you, then please contact your GP. Thank you, Sophie, and thank you, Dr. Simon Vincent. Now, Woman's Hour is nearly 80 years old,

and we are busy preparing the celebrations for our big birthday, which is next month. I know, we look good, don't we? And you can get involved. Just tell us how the programme, has helped you in your life. Did you get information that helped you make a difficult decision?

Were you inspired to make a big change or to take up a cause and become a campaigner or simply the confidence to try something new, be it a job, a hobby or a new relationship? Whether it's something you did after hearing one item or perhaps you're a lifelong listener and that has made an impact. We would love to hear from you.

Get in touch in the usual way. The text number 848444 or you can contact us on social media. It's at BBC Woman's Hour. Get more with BBC podcasts, wherever you listen. Be the first to listen to your favourite shows, like evil genius, good, bad billionaire, and you're Dead to Me, with a subscription to BBC Podcasts Premium on Apple Podcasts. You can also enjoy a range of our podcasts ad-free with an Amazon music subscription.

Now, yesterday, the Black Child Down syndrome project was recognised at the BBC Make a Difference Awards after being nominated in the Best Community Project category. Founded two years ago by Denise Bartlett Grant, Oneness Sankara, Marcia Martin, and Tanya Falugi Akezié, the group was set up to challenge the lack of representation and support black families raising children with Down syndrome. Their recent project, reflecting radiance, featured portraits of children who were supported by the project and was created with photographer and Oscar-nominated filmmaker,

The initiative has also been nominated for the National Diversity Awards, which will be held in Liverpool tomorrow. Well, joining me now are two of the project's co-founders, Denise Bartlett Grant and Oneness and Oneness. Welcome. Denise, firstly to you, congratulations on the nominations. How did the four of you come together to found the Black Child Syndrome, Down Syndrome Project? Good morning. So we are all first and foremost mothers of children with special education. and disabilities. Three of the founders, myself, Oneness, and Tonya, all have children with Down syndrome. And Marcia, who also has an organization, Black So Mommas,

is the mother of three autistic and neurodivergent children. So we kind of all came across each other mostly because of our kids. This whole project started because of our children. And we, I don't actually remember how we found each other, but there was an exhibition that took place where children with Down syndrome were photographed originally. And what we all realized collectively was that there was no children of colour in that exhibition. This wasn't a intentional omission, I will add that. But it kind of signal to some of the concerns and fears that families from minority groups have

when putting their children with additional needs and disabilities out there. but also the very obvious, my background is education and social science, so the very obvious sort of omission almost of noticing that minority children were missing and whether or not people even knew or understood that there were children from ethnic minorities that also have Down syndrome. Why is the intersection between send and race often overlooked? I think that the wider community, just has the ability, let's say, to focus purely on disability. Whereas out the gate,

we are, you know, there are stereotypes that are attached to being of colour. And so when I had my daughter, my biggest fear, you know, pregnancy should be a wonderful time, right? But I had a postnatal diagnosis confirmation. And at that initial moment, I was like, oh my goodness, she is a female, she's black, and she has a disability. And that really resonated with me in terms of just how much more complicated and how much more difficult this world is going to be for her, but also us as parents of children with additional needs. Because people often just overlook it, they don't see it, they don't want to see it. And unfortunately, for those of us living it, it's well and truly there and present all the time.

Oneness, let me bring you in. What kind of support does the initial? offer? The representation piece, I can't even, I can't overstate how important that is. When I first had my diagnosis, you know, you do what any good mom does, you go on Google, and you're not there. There were no families that looked like mine.

I mean, even what was there about Down syndrome was archaic and then to just not see any representations of who you are, who you have the potential to be what your life will be like was an unexplainable gulf that was inside. And so even just by seeing your reflection says that you are important and you are valid and that you matter and for your children to see themselves celebrated and have that kind of pride to connect with other families,

having shared lived experience, such, you know, with such a support for each other. Yeah, what kind of, I just wonder what the effect is on parents, carers, and the children of that lack of representation and lack of understanding. Before we get to the kind of what, the positive,

like what, what did that do for you when you initially went on to try and find the network and it just didn't exist? Well, it's like, like someone once described it, like taking a, being in a photograph and then you go and you go to look at the photograph and you can't see yourself. And it almost makes you feel like, am I okay? Am I not there? Am I not important? Is my life worth for less? You know? And what does that, what does it hold? Am I not there because we don't make it? You know, all of these, these types of questions

where it's already, you're already dealing with a diagnosis and a new world coming. And it's like the ground has to appear as you walk because you don't know what's, what the future holds for you. So Denise, what inspired the group to create the reflecting Radiance exhibition with Miss Anne Harriman? I think the fundamentals were that we, we just weren't seen simply what one has just said. There was not, I mean, Google is a massive entity. Yeah. And the fact that we.

We all start with Dr. Google and nothing. And we decided that it was really important, not only for the families of those of African heritage, but also for the wider community to just see, to just be able to see. And also for these kids to be able to see themselves. I mean, I grew up here, I'm from here, and I remember what it was like growing up and not being really seen. I think your prior guest was just discussing that sort of you're here, but you're not

recognised, you're here, but you're not noticed. And that was on top of sort of just being in my case, a black female and for my daughter as well, I just really didn't want her to go through that. And I think collectively we decided, no, these kids are amazing, beautiful, funny. Like, I spend most of my time laughing. And yes, they have their difficulties and challenges. I'm not going to admit that. You know, many of us have spent a long time living in and out hospitals. But their tenacity and just their warmth, who they are as individuals as a collective as well, it's just amazing. And we wanted that to be seen, you know, for everybody to see. And how do you get someone as esteemed as Miss Sanharaman involved?

Connections. So Tonya, when we first had this discussion about the images. The idea originally came from a group in America who had a, who has a billboard in Times Square every year. And I said, I want to see our kids on Piccadilly Circus billboard. I want to see them up there. And Tonyi was just like, oh, actually, I happened to know somebody who potentially could help us and there lies the connection with Miss San. Oneness, what did it feel like to see children's images on the big screen at Piccadilly Circus? absolutely amazing. I mean, you know, you asked about like, you know, getting the photographer involved, Miss Anne and everything, the power of art and the power of beauty. I'm an artist myself.

And we know that, like, art, imagery, etc. can just transcend so many conversations and so many barriers and so looking at that screen, you just felt the importance and the celebration of our wonderful children. And how has working on this project with other Black Send mothers impacted you, both of you? For me, support, support to know that I am like I'm not imagining things. You know, when you have shared lived experience, sometimes when your, you know, your other guest spoke about being the only one in the room, you can second guess yourself and gas by saying, well, am I taking things too personally? Maybe things aren't as challenging as I'm perceiving. But when you go and you're around others and they are having like mirroring

experiences, that is, you feel upset because you don't want everyone to be going through this, but also you know that you're not making stuff up and there was a power in it to say, okay, we can do something about it because this is very real. And Denise, the support must be invaluable because, you know, you are mothers who are having to bring up your children and also advocate for your children.

And, you know, you tell me, some of the biggest misconceptions people have about black children with Down syndrome. I think we have, you know, the initial sort of misconceptions that people have black children in general. So the idea that, you know, misbehaving, not necessarily able to grasp things easily not, and this is me as a teacher, what I've seen people, my colleagues, depict an education. But what I've learnt as a parent is just, I mean, my daughter tries so hard

at absolutely everything. And, you know, she sees it, she assimilates it, she wants to become it. At the moment, she thinks she's a gymnast. She thinks she can swim. And I'm like, girl, go for it. Do Paralympics, whatever you need to do. I've got you. She loves the camera. She loves to model.

And so there's so much, I mean, on his son, he's amazing on a microphone. You know, my daughter just got her Lambda examination, by the way. So I was really, really proud. So there's so much that these children can do. But I think when you add on the layer of the expectation of being a black child at the same time, it just, I don't think people fully grasp and understand the impact of that. And in some of the actions that families, special needs families battle with, you know, education, social care, medical,

I don't think people ever really start from that place of how much have these families endured prior to even just walking into our room and meeting with us. And a lot of the time, it can be quite extreme. Well, I want to say once again, congratulations on your nominations. and the work that you are doing, Denise Bartlett-Grantz and Oneness Sankara. Thanks to both of you for joining me to talk to me this morning. Thank you. Thank you. 848444.

Now, over the past week, we've been running a series of features called Daddy Issues. Our reporter Joe Morris has been speaking to listeners exploring the impact of paternal absence. Well, today I'm joined by Emma and her father, Arthur. To share their story from two perspectives, Emma was a daddy's girl, and she bonded with her father over sport. She was a competitive swimmer and Arthur was a British four-time world powerlifting champion who competed for 30 years and secured numerous British and European titles. But Arthur became addicted to drugs, steroids and cocaine, leading to infidelity and leaving the family when Emma was a young teenager. Emma wrote a book about their relationship called All the Times You Are Not There,

a raw and redemptive memoir which describes how through Christian faith they came to forgiveness and reconciliation. Well, both Emma and Arthur, join me now for Dan Line from Cornwall. Morning and welcome to both of you. Thank you for taking the time to speak to us. Emma, I'm going to come to you first because you say you and your dad bonded through sport. Tell me more about that. Yeah, I mean, my dad's a world champion power lifter, so you grew up in an elite sport. You kind of learned to love it. And our lives did revolve in a large part around his training, my mum's netball. But we are just a very sporty family and I always love sport. I did every sport go in at school and it definitely was one of the things that sort of bonded me and me and dad were very similar, very, very overly competitive.

And I guess I always felt that like when he was cheering me on or when I was allowed to go like train with him, it was kind of like one of those moments, you know, as a child when you get an insight into a grown-ups world, it felt like being invited into something cool and special. And so, yeah, I mean, I just loved it. I still do. I love chatting to my dad about sport we were talking about CrossFit yesterday. And it's just one of those things that we have in common and we love, you know, has definitely bonded us over the years. But a lot happened when you were a teenager. As I mentioned, you know, your dad became addicted to drugs and had an affair and he left when you were 13. So what do you remember about that time? Yeah, that was a very difficult time. And I think

probably even harder because I did really idolize him. And we were incredibly close. And I think when that kind of happens and you don't see it coming, my parents didn't argue, they didn't have a difficult relationship at all, actually. I think we were kind of probably from the outside one of those families that everybody looked at and was slightly jealous of that everything looked so perfect. So it just became, it came as such as a sideways shock, I guess.

I remember it very clearly. My mum told me that my dad needed to speak to me and he sat me down on the edge of his bed and he said, how do you tell your little girl something that you know is going to break a heart? And I asked him if he was having a little bit of, an affair because it was the worst thing I could imagine. And to be honest, I don't know if I even really grasp what that properly meant as a 12, 13 year old. And he said yes. And yeah, that was

the kind of the day really that everything changed. He said that it wouldn't change that, you know, him and my mum were going to work through it, that he wasn't leaving. But a couple of weeks after that, I came home from school one day and he literally didn't come back from work. We were two weeks away from moving house, a house sale that he told my mom was financially necessary, but in retrospect was due to the drug addictions and all the things that were going on underneath the surface that none of us knew about at that time. And there ensued sort of three and a half years of chaos, really, as he descended into a drug addiction and we sort of tried to cope with his comings and goings. And how did you cope? Oh, well, yeah, very difficultly. You get through

what you get through, don't you? And, you know, you know, for me, one of the things I mentioned in the book was I actually started going to church like a couple of months before, really. Dad's, dad left for the first time. And my faith family, my church family really sort of held me together and became my sort of my safe space, I guess, the place where everything felt okay and felt stable and felt secure. And they really loved us really well and looked after us and gave us some sort of sense of security, I guess, and helped my mum as well. And my mum and I, you know, it really was a time where we, sort of lent on each other, we became very close. And yeah, we got through, but not without

scars, I guess, and not without a lot of pain and lots of stuff going on over the years. I think we should bring your dad, Arthur, into the conversation. I mean, Arthur, how does it feel, hearing all of that? Well, I've heard it before, and I've read the book. And I've also told the story myself on many occasions. Yeah, there's, there's, there's, there's, a tear in my eye. Emma is still my little girl and it's it still hurts to think that I did hurt her. But of course, you know, the good thing is that we have been reconciled over it. And of course, what Emma has told is the truth. So I have to man up and face up and say, I did this terrible thing. And what does that feel like? And how long did it take to get to that point where you're

able to face it and say, you know what, I did a terrible thing? I did this terrible thing. Well, Well, again, from day one, one of the things with any addiction, psychologically you're not thinking about life properly. And there was a time in my life, as Emma has just said, when we had a great family, my wife, Emma, our son James, we had a successful business and I had a successful sporting career. So from the outside, yeah, we were a great family unit. and my drug addiction, which I thought I could control,

actually started to control me, and then, of course, my life went out of control. Can you describe how that happens and how it affected, yeah? Well, I think really, like a lot of sports, when I became addicted to my sport. And I think if you speak to a lot of athletes, they will say the same. And like any addiction, it needs to be fueled.

And I've wanted to train and train more. And it's a physical impossibility. Your body needs to rest. Your body gets tired. I was feeling fatigued and tired. And I literally dabbled in taking one effigrin tablet just to give me a little boost. And then that led into sulf. That led into cocaine.

And that was given me that boost. However, you still need to rest to recuperate And then I started dabbling in steroids And as I said, I thought I could control it But like any addiction, it ends up controlling you And it went out of control And it spiraled And you know, it was quite a formative time in your life

You're only 13 Emma And then your dad left and you know He said it three years of you having to kind of cope with it With your mum and you found solace in the church And they really did support you But how has it impacted your adult life? Yeah, it's, interesting thing. When Dad finally hit rock bottom and eventually, I mean, he bounced back and

forwards a lot over three and a half years. So there were plenty of times where he came home again and said, I'm going to get clean. I'm going to get sober. The affair's finished. Everything's going to be fine now and then three weeks later, a month later, it wasn't fine. So the last time when he said to me, I've started going to see a counsellor who's a guy from our church. I've quit the drugs. I've moved back to Nan's, his mum's house. I don't know why I believed him, but genuinely I saw a change in him that I thought this is real. I know this is going to stick this time. And so in one respect, like that was quite instant.

I suddenly had faith that everything was going to be okay. My mum didn't. I went home to her and I was like, Dad's changed. It's going to be fine. And she was like, great. He can go do that somewhere else. So I need to see this work out long term. So in one respect, there was a sort of a very instant like reconciliation between us.

But at the other hand, you know, there are things take time to be able to trust that someone's reliable again. And then once that relationship was repaired, I thought everything was fine. And actually it wasn't until I got married myself that I realized that there were some sort of even, you know, completely really, really deep subconscious assumptions that I'd carried into my own marriage. And the biggest of those was that if this could happen to my parents, you know, they were childhood sweethearts, they met at 14, they got married at 19, they obviously adored each other. I just thought, well, if that can happen to them, then my own marriage is also vulnerable to that. That will happen to me.

And I think as well, there's sort of like, you know, the fact that I looked up to my dad so much, I thought, well, if he can fail like that, then I can't see any reason why my own husband won't. And that obviously is not a very nice thing for a man that you've just married to hear. And over time, particularly when my husband... Did you recognise that that was coming from where that was coming from? Not until it hit crisis point, to be honest, Anita. How it manifested itself for me was I was just overly suspicious all the time. We moved from London to Cornwall.

My husband was travelling back to London for work quite regularly. Staying with my parents who were still in London at that time. I'm not quite sure what I thought he was doing. But I just became convinced that he would also have an affair, that he would leave me, checked his phone, all the classic things, you know. And then at one point after we had our first child, I had a sort of a little bit of a mini breakdown on him one day. And I was like, it's okay for you.

You know, you can leave. You can walk away. And he said, why would you think that I would walk away? Like this is. And at that point, he said to me, I think this is going to become a problem that we can't fix if we don't do something about it. So at that point, he was like,

I think we need to go speak to someone. And we went to see a couple at our church who are counsellors. And then she said to me, I think we need to talk this through. And that was when I started one pick. Oh, I think I've just carried some of these things unconsciously without even thinking about them and I need to sort it out. And maybe your daddy issues in inverted commas.

Yes, my daddy issues definitely. I mean, isn't it interesting? Like even when you've been through so much and it takes a while to even recognize that where these feelings are coming from. Yeah, I mean, that was 13 years after my parents got back together. Yeah. But I suddenly thought, oh, I've just internalised. If my dad's not perfect and he can mess up like this, then of course, all men will.

Yeah, well. Arthur, you're living in Cornwall, how is life? Yes, it's good. The sun is shining this morning. I'm sitting in the office and I'm probably only about 10 or 15 yards away from Emma. She's in that house next door. So, yes, as some people say, I'm living the life. Living the life, wonderful. Well, you can say, well, we've done the interview, so you can go and give her a hug now and have a cup of tea together. I want to say thank you both for speaking to me this morning, Emma and Arthur. And you can hear from Julie, Haley, Carmen and Donia, who spoke to our reporter Joe Morris for the Daddy Issues series. All you need to do is go to BBC Sounds and search for Woman's Hour. Now, as you may have

heard, Bonnie Greer, the playwright, novelist and cultural commentator has died at the age of 77 after a brief illness. She wrote more than a dozen plays for the BBC and was given an OBE in 2010 for her contribution to the arts. Bonnie appeared several times over the years on this program and her distinctive voice. What a voice made an enduring contribution to British cultural and public life. Let's hear a bit of Bonnie appearing on Woman's Hour on the 8th of February 2013. Here she is talking about the impact Ella Fitzgerald and Billy Holiday had on female jazz vocals. Ella was the supreme jazz musician. She was a musician and she used her voice to express. the essence of what jazz is.

There's been no one like her, and I think because she made so many records, because she was such a big superstar, because Marilyn Monroe was told, use her as your voice teacher, because her technique was awesome. We think we understand what she did. We hear a voice all over, but she was absolutely unique. She had relative pitch, which means that you could drop a spoon on a table, and Ella could pitch you.

with that. She tuned the orchestra. She was a first violin. She was an amazing singer. So people began to try to imitate her. Tisket of Taskett was revolutionary because it imitated literally Louis Armstrong's horn as Adelaide Hall did. He was the focal point of that whole arc of revolution and then the women were the ones who vocalized it. A great example there of Bonnie Greer championing women as she always did. We've had lots of you getting in touch throughout the program with various comments about things we've been talking about. I started the program by asking you to tell me about your aunties. And this was because we started by talking to the brilliant mirror sale about her memoir vigilante. I've got a message here saying my best

ever auntie was Auntie Wynne when I was growing up in the 50s. She had me and my three brothers all day every day, every other Sunday to give our mum a break. She taught me to swim, ignited my love for languages by letting me listen to her German linguophers. own LP, balanced on her head in a yoga pose, baked buns, hopefully not at the same time, or maybe at the same time, maybe she was epic. Let me talk her socks down, reader stories, played out with us and best of all, to my eternal gratitude, told me about Tampax. I don't know why she didn't have children. Perhaps she couldn't, but she was a brilliant auntie, and that's from Sue in Manchester. Anne has written in to mention her auntie Francis. She said,

just going to her funeral, an inspirational auntie who introduced me to sunflower margarine in the 1970s when my parents insisted on butter, a rebel through and through. And another one here saying, I have an inspirational anti-Cath. She's not a relative and only a year or too older than me, but she's inspired me to write poetry again. She's always full of joy and has been a role model for so many. And that's from her friend Julia. And another one here saying, when my son used my sister, his first name rather than her aunt titles.

She told him he could call her whatever he likes, as long as he put ante in front of it. We now make her t-shirts every Christmas. The favourite remains anti-inflammatory, but this game never gets old. Thank you for all of you who've got in touch. I haven't so many comments. I'm sorry I haven't managed to read all of them out.

Tomorrow I will be back and we'll be talking to Olympic medalist Georgia Hunter Bell about competing in a new all-female track and field event that's promising to give female athletes a financial stake in the. their sport. So join me tomorrow at 10 for more Woman's Hour. That's all for today's Woman's Hour. Join us again next time. Hello, I'm Greg Jenner. I'm the host of You're

Dead to Me, the comedy podcast that takes history seriously. And we are back for a 12th series. Everyone in that film is wearing their own pants. We're joined by comedians like Kyle Smith Bino and Desiree Birch. Can't see how this would go wrong. We'll meet many medieval saints. Motivational speaker saint with like a sort of Madonna head mic on. doing a history of underwear. Plus, there's loads more. You're dead to me. Listen on BBC Sounds.

With a subscription to the BBC website and app, you can now get early access to your favorite BBC podcasts. Listen to shows like, you're dead to me, in our time, good bad billionaire, and more. Plus, there's all the other great benefits you get with a BBC subscription, from live streaming the BBC News Channel and acclaimed documentaries to in-depth analysis and features. Visit BBC.

com forward slash subscribe to find out more.