Woman's Hour - Women reporting the war in Ukraine, SEND consultation, Red Dress project, former Olympic Athlete, Anyika Onuora

Episode Date: June 16, 2022

Her newspaper only launched 14 weeks before the outbreak of war in Ukraine, but the Kyiv Independent now has over two million followers on Twitter, and has been described by Time Magazine as: "The world's primary source for reliable English-language journalism on the war." Emma speaks to the Editor of the newspaper, Olga Rudenko about the challenges female journalists are facing in Ukraine. She also discusses how her and her team, which are mostly women, launched their newspaper just weeks after being fired from their previous newspaper that was owned by an oligarch. In a Woman's hour exclusive, two women whose disabled sons died after failing to get their Special Educational Needs supported in the right schools, have written an open Letter to two Secretaries of State warning that the system must change. Ministers are consulting until July 22 on how to make the SEND system better. Our reporter Carolyn Atkinson tells us more, and Emma speaks with Amanda Batten, chair of the Disabled Children’s Partnership and Susie who spent £10,000 battling the system to get her disabled child into an appropriate school.Since 2009, the artist Kirstie Macleod has been working on The Red Dress project. This involves pieces of this red silk dress travelling around the world to be embroidered by mostly female artisans, many of whom have been marginalised and live in poverty. After 13 years, 46 countries and 343 embroiderers, the dress is finally finished.And, former Olympic Athlete Aniyka Onuora may have stepped away from the track, but in her new memoir: "My hidden race" she details her personal experience with professional sports, racism and sexism, mental health, and growing up in a Nigerian household in 1990’s Liverpool. She joins Emma in the studio.

This BBC podcast is supported by ads outside the UK. I'm Natalia Melman-Petrozzella, and from the BBC, this is Extreme Peak Danger. The most beautiful mountain in the world. If you die on the mountain, you stay on the mountain. This is the story of what happened when 11 climbers died on one of the world's deadliest mountains, K2, and of the risks we'll take to feel truly alive. If I tell all the details, you won't believe it anymore. Extreme, peak danger. Listen wherever you get your podcasts.

BBC Sounds. Music, radio, podcasts. Hello, I'm Emma Barnett and welcome to Woman's Hour from BBC Radio 4. Good morning and welcome to the programme. In a moment, we will hear from a woman who has achieved with her largely female team something incredible, setting out one of the newest and most trusted English news services from Ukraine. A mere 14 weeks, as it would transpire, before Russia invaded the country and war began. In fact, Olga Rodenko, the founder, is in the UK right now speaking as part of a business founders event to fellow startup entrepreneurs. They didn't, in her case, design their team to be female.

It just sort of happened as you'll hear. But I did want to take the opportunity today to ask you about the business startups in your life, all the enterprises, all the groups that you have created. What are they? What inspired them? Why did you set up your business or organisation? What was the timing like? So much of it can come to that. And what prompted you to actually do it?

Perhaps you're toiling on it right now, listening to this programme. Do get in touch if that's the case. Tell me what you've set up and why. And there's really the story, if you can, behind it and how it's been going it alone or working with others on a project that you've had a vision for. 84844 is the number you need to text me here at Women's Hour

on social media. We're at at Women's Hour on social media. We're at BBC Women's Hour. Or get in touch. You can email us through our website. And I should say those texts will be charged at your standard message rate. Also on today's programme, we hear about the two mothers

trying to change the special educational needs school system after the deaths of their children. A red dress that has been made by women around the world and we'll hear the story that it's trying to tell. And Annika Onora, the retired sprint track and field British Olympic medal winning athlete, will be joining me in the studio to talk about the private race she's been running and is now ready to talk about. But first, as the leaders of France, Germany and Italy are expected to arrive in Kiev for high-level talks,

one woman and her team will be watching their every move. Olga Rudenko, a 33-year-old Ukrainian journalist and editor of the newspaper Kiev Independent, which, only set up 14 weeks before war broke out, is largely a team of women, I should say, by that team, is now one of the most trusted primary sources for English language journalism on the war, having amassed more than 2 million Twitter followers. She's graced the cover of Time magazine and is trying to provide a window into Ukraine

during this devastating time for her country. It's a remarkable journey, given that the Kyiv Independent only came into being in November 2021, after the owner of the newspaper Olga was previously working for, the Kyiv Post, fired its entire editorial staff. Well, I spoke to Olga just before coming on air, and I started by asking whether she was proud of what she had achieved so far. You know, Emma, it's a strange feeling because we did become an overnight success in February. But at the same time, we're so aware all the time of the reasons why this happened, the horrible invasion of our country. So it is so counterbalanced by the

feeling of grief for the tragedy that is happening to our country, that it's really hard to be proud. Yes. And also the responsibility, I imagine you feel, to be that window into Ukraine. Yes, the responsibility is tremendous, of course. I mean, just to give you an idea, right before the war, we had 30,000 followers on Twitter, and we thought that it's a very good number. And now we have 2 million who are watching, you know, what we do, reaching out to us to get the on-the-ground journalism, local news from Ukraine in English.

I mean, we've always, of course, tried to get everything right, to be careful with what we put out, just to stick to basic journalistic principles. But now we understand that it's just so much more important to get everything right, basically, because a mistake in these times can be very costly. Yes. I mean, the fact that this was set up at all was also a story in itself, because I understand you were all working together a lot of you on a previous newspaper and all lost your jobs yes that's correct we um almost all of us who are

now with the Kyiv Independent used to be the newsroom of a newspaper called the Kyiv Post which was for many years the main English language news source in Ukraine. It was online. It was also a print weekly newspaper. And it was known to be editorially independent. And what happened was last year in November, the owner, who was a Ukrainian businessman, decided that he's apparently having too much trouble owning an independent newspaper in Ukraine that is often critical of authorities.

So he decided to shut it down and relaunch it with the oil staff that is going to do what he says. And all of us were fired overnight in November. And we decided immediately that we're not just going to go and get good jobs at other places and we want to stick together and we want to create something of our own that would have the same mission of the Kyiv Post, that would bring the news from Ukraine to readers around the world, be the window into Ukraine. And you did it, and with you as the editor. Yes, so the Kyiv Post was run by the chief editor, Brian Bonner.

But he announced his retirement from journalism when this happened. It was, of course, a big shock to him too. This newspaper was very important to him. And I was deputy chief editor there for the past four years. And there was an interesting situation when the staff said that they wanted me to be um the that like the chief editor because I was the deputy and it seemed logical but I said no I could it shouldn't just be because of who I was at the key post you you guys should actually take a formal vote on who you want to be there

and and they did and uh and it was me but i needed sort of that you know confirmation yes very democratic and and so you could feel like it was yours to do but but that is the role that is the responsibility and as you say you know it's been you've been catapulted as a as a news outlet and you yourself you know on the front cover of time magazine for instance i know you're here in the uk speaking to lots of people at the moment about what you what you've been doing and how you've been doing it and and a lot of women on the team i understand as well yes it's mostly women i mean back at the kiev post we usually had at least half of the news on most women, usually more. I think the face of journalism in Ukraine is mostly young women. But also, you know, at the Kyiv Post,

there were usually men who were at the top of the organization, like in many news outlets. So when we started the Kyiv Independent, it was me as the chief editor. It was Daryna Suchenko, another former Kyiv Post colleague, as the CEO, who is also a young Ukrainian woman. And my deputy, the deputy chief editor of the Kyiv Independent, is another young woman who is, in fact, just 26. And we walked around and we realized that, wow, this is, you know,

we didn't intentionally set it up as an organization led by women, but it feels good. It feels good and it feels, you it feels fresh, like a change. Yes. And do you know why a lot of the journalists coming through are women in Ukraine? Is there a reason, do you think? This is something we talk about a lot. We agree that, unfortunately, one of the main reasons is that it's a pretty low-paid profession in Ukraine. And at some point, a lot of men drop out and look for something else.

But also at the same time, you know, even when I look back to when I was studying journalism in a college in Ukraine, most of my classmates were women. Interesting. It's something to note, as you say, not necessarily by design, even in your own organisation, but it's a trend that's interesting for us to hear about. But of course, at the moment, what we mainly hear about regarding Ukraine is the war and what is happening on the ground. And for instance, we of course know that leaders of France, Germany and Italy are expected to arrive in Kiev today for high level talks. And of course, we're following the words of President Zelensky. I understand, though, even for you and your colleagues as well, that you were still surprised by when the war began. Even though there were warnings, it still took you and your colleagues by surprise. Yes, absolutely. You know, even being there in Kiev and hearing all the warnings and feeling this surreal buildup in the weeks before the war. And of course, every conversation we had with anyone, be it at work or over lunch or when we go out, every conversation would be, will they or won't they and first we thought for a long time that the the build-up of Russian troops around Ukraine was an intimidation campaign then when it started

to become clear that it's it's too much to just be an intimidation campaign we we thought that it is most likely that the you know an invasion is going to happen in eastern Ukraine that at most Russia will try to try to take more lands in the east of the country where they already occupy part of the country since 2014, when they also, of course, annex Crimea. But for Kiev to be attacked like that, and immediately in the first minutes of the war, of this invasion, that was a complete shock to all of us. How has it been just for you as a person editing the news at this time? It must be very difficult to keep some of your feelings in check and in particular I imagine your emotions as well

in the sense of how hard this is to see what's happening to your country and to your fellow women and men yes it is but um you know i've been saying this being a journalist in a country in your country covering a war is sort of both a blessing and a curse in the sense that of course you you can't look away you can't you can't just turn the news off for a day it's your job to look at every horrible picture to report and read about every atrocity that happens so you you know all of it gets to you and you can't look away but at the same time because you're a journalist it kind of gives you a framework to look at things because you can look at something horrible happening and you know while you're feeling affected as a human being you also

started starting to think about you know you get all the thoughts like like is it being reported enough can i send a reporter there is there anything about this that is not being being known or told like how can we do a better job here so you you get all this work-related thoughts going and it kind of helps you process what is happening yes i think that's a really interesting perspective and and you know one that of course you know with with colleagues as well that i've discussed about different stories over the years that at least you feel that you are telling the stories. And even if you're not processing them how you would if you weren't responsible for that,

there is a way to contribute in some way. Yes, exactly. We are blessed to be in this profession at this time because it also gives us a feeling that we are contributing, that we are doing something to help our people. Olga Rodenko there, the editor of the very new newspaper, news source Kyiv Independent,

only set up 14 weeks as it happened, as it transpired before the war broke out in Ukraine and giving that window into her country at this extremely difficult time. You've been getting in touch about things, enterprises, businesses, organisations that you have set up and when and why. And there's some brilliant stories. Thank you so much for the ones that have already come in. Rachel says, my name is Rachel. I live in Norwich, running a business in an office at the bottom of the garden. My business supports communities,

writing community planning documents to set out how they want their village or town to develop over the next 20 years. I worked in local government for many years and while on maternity leave I was made redundant. Very hard at the time looking back 10 years now it was the best thing. I have autonomy over my work and it fits in with school hours and family life. I can't imagine going back to the nine to five in a big office environment and today I have Woman's Hour on the radio whilst working in the garden. Can't get better than that. Obviously Rachel I'm a bit biased but I agree with you there. Thank you very much for getting distracted enough to send us a message and then getting back to it. Another one actually from Lockdown. My husband and I set up a mobile refill

shop and doorstep delivery service during lockdown as a way to raise awareness about plastic pollution make doing your bit convenient and easy and play our own small part in tackling the climate crisis we restored and repurposed a 1972 milk float called ernie very happy to talk about our uplifting life-affirming journey working together engaging with our, discovering incredible small producers and giving something back. What a lovely story. And I like the sound of Ernie. Maybe a photo will follow.

Who knows? But keep those messages coming in, please, on 84844. Now, getting a good education is notoriously difficult for disabled children with special educational needs in this country. The government itself admits it is an adversarial process for families with many facing a postcode lottery. Others fork out thousands of pounds in the battle to get their child a suitable school place.

The process has been described by those who know as wading through treacle. The government has committed to improving the system and has launched a consultation. Ministers want to hear your views on how to make the system better. This is an issue close to the hearts of two women whose teenage sons were, according to two separate coroners, massively failed by the special educational needs system with appalling and tragic results. Today, they have written an open letter warning to both education and health secretaries that the system must change otherwise more children with complex disabilities could also

die. In a moment I'll speak to one woman who's spent thousands of pounds to get her child into a suitable school but first let's hear from our reporter Carolyn Atkinson who's been putting this story together for us. Carolyn let's start by hearing how many children rely on this system. Well, in the past hour, the government's actually issued its latest figures for England showing that nearly one and a half million children have special educational needs and disabilities. And that's actually up by 77,000 on the previous year. Now, many, of course, get fantastic support in mainstream or in specialist schools, and they could be state or privately run, and supported by very experienced and phenomenal staff.

But many, many parents will tell you that getting into the right school can be a massive battle, a huge fight. And it seems the government is in agreement. It is. Its verdict on this is that it's inconsistent, it's process heavy and it's increasingly adversarial. They say it leaves parents often facing difficulties and delays too often about accessing the right support for their child. Now, a woman called Patricia Alban-Stanley tragically knows what can happen in extreme circumstances when things don't go right. Her 13-year-old son, Sammy, was autistic, and he had a rare genetic neurological condition of the brain called Prader-Willi syndrome.

Now, he died two years ago after falling off a harbour wall, and the coroner at his inquest issued a warning predicting that similar deaths could happen again if children like him are excluded from getting the right educational and special needs support. And his mum, Patricia, is one of the two women sending that letter you mentioned, shared exclusively with the Woman's Hour, sending it to Sajid Javid, the Health and Social Care Secretary, and to Nadeem Zahawi, the Education Secretary. Now, I recently spent the day with Patricia in Ramsgate,

and you may find some of this report distressing. One of the most joyous moments of my life and the proudest was when Sammy took a big role in The Wizard of Oz, the school play. Scott Fudge, all that knocking is too early. Come back later. It was only a matter of weeks before he died. I was just so proud of him.

He learnt his lines. It took him months to learn them, but he just kept persevering until he got them right. Just so terrible that a matter of weeks later, he was lost to us. He was absolutely delightful, a sweet, sweet little boy. He basically lifted people up. He made my life multicoloured.

And he was a busy boy, as well as the school stuff, all the home stuff. He was into woodwork and piano. Yeah And he was a busy boy as well as the school stuff, all the home stuff. He was into woodwork and piano. Yeah, he was always active. You could always hear him hammering away in the garden with his latest carpentry project. He was also gifted at sewing and all sorts of craft. When he was about 12, he started to learn the piano as well and although it took a little time to get his sort of left hand to cooperate he worked at it because he was very determined he did well i have recording of them so and he would get up early in the morning and practice unlike most children you could hear him practicing his scales and other little pieces that he was you know learning the house was always very

you know full with sammy in it right both fingers starting on c we were looking after him obviously 247 because there was no school place at all so this had been going on for months we were without a school place and we were without social care and he was becoming increasingly agitated just couldn't understand why he couldn't go to school like his sisters and like everybody else and he'd been out of school for about a year eventually he was out of school for about a year yes and we were forced into tribunal. Just before the tribunal, they caved in at the last minute, agreeing to the school place that was ideal for him 13 months before. He was autistic and he had Prader-Willi syndrome. What issues did that present to you as a family? Some of the

common aspects that Prader-Willi is known for, like the overeating, we'd got some grip on that pretty well. But where we really struggled was where the kind of autism and the Prader-Willi syndrome reacted together, which was with the behavioural episodes, which are very consistent with the Prader-Willi diagnosis. And these were very difficult to manage, especially as he grew. And although they weren't all the time, they were extreme when they happened,

and they were life-threatening. So you'd have two very differing personalities, really, to deal with. And, you know, he had high care needs, really. And when they were managed well, you know, he was able to thrive. We really did need, as all people with a condition do, proper care and treatment and education. So all that time, all that pain, all those emails, all that time that should have been spent helping him

was spent on dealing with that ordeal of fighting for his basic rights of education. It was horrendous. Yeah, the episodes were quite extreme. At one point, he tried to jump out from a top floor window. He also sometimes ingested things. Other times, he tried to drown himself in the sea and other risky, very high-risky behaviour

that was completely out of character to what he would be like when he was sort of not heightened. Occasionally he put objects up into his nose, such as screws or panel pins, needles, things like that, and twice he had to have emergency operation to have these objects removed. And there was a very dangerous episode in a... You know, they were all dangerous and life

threatening but this one flagged everything to me we were driving and his phone charger broke and it became too much for him so he climbed into the front as I was driving and tried to take the wheel and then try to exit the vehicle in motion so I had to obviously do an emergency stop and hold on to him with all my might. And it was terrifying. Lorry's were swerving past and they cordoned off the motorway and took him to hospital. And I thought, well, this will be it.

Everybody will start waking up to what I've been saying now, but that did not happen. That didn't happen. Sammy was not disabled enough and also was too disabled in other ways. For some services, like respite, they said he was too disabled, he was too challenging,

so we couldn't get respite. But of course, at the same time, they're saying he doesn't meet the criteria for the children with disabilities team, so you couldn't really win. He fell through the gaps of the system and nobody was prepared to step up cams were passing it to social services social services were passing it back to cams which was a theme throughout the inquest investigation

and you've said that you were wanting to show us where his final moment was. Yeah, where he was conscious here. So this is where he walked down that morning early and by where he fell, actually. So it's quite difficult. But no more difficult than every minute without him, with him absent, to be honest. We were absolutely traumatised

when they told us that there was a boy at the base of the cliff. I knew straight away, I just... It's... Yeah. It's the most horrendous moment of my life. It wasn't premeditated by any stretch of the imagination, it was just sheer frustration that exacerbated another episode. So that's what happened. And he fought for his life for five days.

You know, and I didn't leave his side. I stayed in the bed with him, praying that he would, you know, pull through. But he didn't. And he died on the 26th of April, 2020. We just needed that extra bit of help, wraparound care, in the home, in the mornings and after school. And they fought me tooth and nail on that. It was another one of these kind of process-driven kind of hoop jumping exercises

that you you expected to go through it just was another one it was relentless this you know as a as a mother now without a child with any disability I'm living a completely different life and my heart goes out to anybody else who is navigating this system because it's horrendous this needs to be taken seriously it is otherwise another death will happen and the coroner was equally concerned and the other point of course is that if you have a child that doesn't necessarily fit the box and many children don't in fact probably no child does they're all unique you know you can't simply slot them into categories and you know if he'd had what i'd asked which wasn't actually that much you know some basic human rights such as an education

a little bit of home home help um social care he would be alive without a doubt there's no question in my mind about that people listening will hear your dedication and your desperation but also your exhaustion and they will want to know you know how you are managing because they won't want to intrude upon your life without sort of asking that question in their own heads well i'm obviously broken because it's agonizing losing a child agonizing and you know anyone that's had that experience will know exactly what i'm saying it never leaves you and it never will leave you so that is why i want to help help spread this message and share sammy's story That's why I'm doing this, in order to make sure that no other parent has to go through this agony.

Patricia Auburn-Stanley talking about the trauma of losing her son Sammy. Now, we have contacted all the relevant authorities and the parties named in the coroner's report. The Secretary of State for Health and Social Care says every death is a tragedy and thoughts are with the family. They acknowledge they've missed the 56-day deadline set by the coroner due to pressures on health services, but they hope to respond very soon. Kent County Council says it wholly accepts the coroner's findings

and it's made improvements already in its children's services. The NHS Kent and Medway Clinical Commissioning Group says it's carried out a full review into SAMI's care, it's increased investment in supporting children and young people with neurodevelopmental needs so that those with higher need are now identified earlier and care can be coordinated sooner. And the North East London NHS Foundation Trust says it's taken a number of actions to prove its services and it'll reflect on the coroner's findings to improve patient care in the future. Carolyn, thank you very much. Our reporter Carolyn Atkinson there. Well tomorrow Sammy's mum Patricia will be telling her story to scores of MPs and peers at a parliamentary meeting about what

children and young people with special educational needs really need. It's being arranged by the Disabled Children's Partnership and its chair Amanda Batten joins me now and also on the line I should say is Susie who has battled to get the right school and education for her severely disabled eight-year-old son Alex. If I just come to you first Amanda, good morning. Good morning. Could I ask for your response with regard to what we, regarding what we just heard from Patricia and the way that she fought for her son, Sammy? Well, I think like everybody listening, my heart goes out to Patricia for that,

just the trauma and the tragedy of her experience. Of course. I think, you know, clearly not every family's experience is quite like that. But I know that any listener with a disabled child listening to the nutrition talk will recognise some of those themes and failings at different levels in their own experience. And I think, you know, it really brings home how how challenging the system is for families to to try and navigate and I think the way um Sammy Patricia thought Sammy didn't

just fit within services and was passed between services and that real struggle to try and navigate and pin down any of the support that's needed, you know, is really a very shared frustration and experience amongst families. Well, I was going to ask why the current system is failing so badly. And in part, I suspect that that last part of your answer is some of it. It is. I mean, chronically, the system is chronically underfunded and it is really disjointed. And I think those are the kind of two main underpinning problems, because families get passed from one agency to another, and particularly where there are budget pressures. And that means they just sort of slip between the services. And that's also what makes it really complex, because there's so many assessments and processes you've got to go through that makes so much paperwork.

And that makes so much paperwork. And that makes it really hard work to navigate. And it means it just takes a long time to get the right support in place. And in a child's life, that time, you know, a year goes by. That's a really long period of time for a child and family. If I can, let me bring in Susie at this point. Susie, good morning. Hello, Susie. Have I got you there? I'm hoping that I do. You maybe have to unmute because you're joining us online. Sorry about that.

Don't you apologise. It's absolutely fine. Thank you very much for being with us. And I know, you know, you know all about this, having had to go to tribunal to get your eight year old son into the right school. Can you tell us a bit about that process for you yeah absolutely so um yeah i mean we fought for two years actually um to get alex into the to the right school for him and um it was awful it was horribly stressful and our local authority i'd say we're actually adversarial you know throughout the process and it cost us a huge amount of money to over ten thousand pounds which we had to fund ourselves you know you know an extraordinary amount a huge amount and you know I really worry about the families who can't resource that or perhaps English is not their first language or maybe they're don't have education or something how do they fight these battles you know to to get the right school placements that I mean yeah yeah, eventually we did win our case and Alex is at his new school now

and he's really thriving. So there can be good outcomes, but it's just trying to, as Patricia and Amanda said, trying to navigate this system, it's just so draining. It's so many reports. I mean, for the tribunal,

we submitted more than 600 pages of evidence. We had to employ an advocate, Lindy, to help us navigate the process because it's quite complicated. No one, you know, there's no document that tells you you have to do X, Y and Z thing. You have to try and figure that out for yourself. So we had to employ someone to help us navigate that. And I don't think we would have had the same outcome had we not employed her and um yeah it's just you know the the pressure that puts on the family you know um I always say to people ask me you know it must be really difficult you know having a severely disabled child and I actually it's not difficult at all that Alex is an absolute joy every minute I spend with him

is you know wonderful nothing short of he's got the most amazing personality you know, wonderful, nothing short of. He's got the most amazing personality. You know, bless him, he can't talk, he can't walk, you know, but he's so communicative, you know, and he's just really, you know, lights up our whole world, he really does. But what the hard part is just trying to fight basically a daily battle to just get a bit of support, to get him the things that he needs,

the right therapeutic input, you know, a little bit of support for us as a things that he needs the right therapeutic input you know a little bit of support for us as a family you know that sort of thing it's just it really takes it's like a full-time job you know on top of the caring role and they're not sleeping at night and also I'm sure you know other work you've got to do as well um in the midst of having to fund that as you just explained let me go back to thank you for that Susie let me go back to Amanda because I should say we did ask the Minister for Children and Families Will Quince to take part in today's discussion but he wasn't available and I suppose in some ways though you are pushing an open door here with the government laying out its suggestions asking for feedback do you agree with

the ideas that have already been put on the table? I think we think the sort of government's problem analysis, you know, how it is, as you said, is kind of it's about rights and, you know, they are listening. There are some good proposals in the Green Paper that could be built on. So there's a proposal for national standards, which could help make clearer the responsibility across different agencies. And there's a sort of aspiration around mainstream schools being more inclusive, which is really important. But there definitely needs to be a lot more oomph behind proposals in that space if they're going to really come through and make a difference. And what's, I was going to say, Susie, for you, what's important that the government change in this respect, apart from, of course, giving it that urgency, that oomph,

as well as listening to what those like yourself have to say? I think for me it's something around an ethos change, because at the moment it just feels like a battle. If you think about the language that people use, you have to fight, you win, you you lose you're battling all the time you know it's I just feel that I want to work in partnership with my local authority it's in everyone's interest for Alex to stay at home with us and we look after him you know it shouldn't get to breaking point where he has to go into a residential facility or something which would cost even more you know so I think it's you know I really I want them to work in partnership with us not it feels like they're working against us a lot of the time

so that that would be my main message I think. Well in terms of what what others will want there is that opportunity to contribute but we're very grateful that you could contribute to us to our programme and to this conversation this morning. Susie thank you very much for taking part and thank you to you Amanda Batten the chair of the Disabled Children's Partnership. A statement from the Department for Education says, we know the system of SEND, which stands for Special Educational Needs and Disability Support, is inconsistent for too many young people, which is why we are consulting on how to transform it, including by proposing new national standards which prioritise early intervention

to make sure individual needs are identified when children are young and by providing families better clarity, more flexibility and less bureaucracy. And if you would like to give your views and take part in the Special Educational Needs and Disabilities Green Paper consultation, you have just over a month.

It closes on Friday, July the 22nd and of course I should also say if you've been impacted by any of the issues discussed in this piece there are details of help available on the BBC Actionline website and thanks again to our reporter Carolyn Atkinson for bringing us that report. Now since 2009 the artist Kirsty McLeod has been working on something called the Red Dress Project and I have to say you've also been getting in touch about what you've been working on independently and I'll come back to some of those messages very shortly indeed having heard about that incredible startup in Ukraine as an English language news service. But back to the Red Dress Project, pieces of a red silk dress have travelled around the world to be embroidered

by mostly female artisans, many of whom have been marginalised and live in poverty. And then they've been sent back to Kirsty to be stitched into one item, this red dress. Well, after 13 years, 46 countries and 343 embroiderers, the dress is finally complete. I spoke to Kirsty at the end of last week and I began by asking her what the original idea behind the project was. So the red dress was created 13 years ago and originally it was to bring together as many different voices from around the world, different identities, to create one united piece of work, like a celebration of unity and peace, togetherness without any borders and boundaries.

On one item? Yes, on one item. Okay, because I'm also aware, you know, the limitations of radio here. We'll get into how and who in a moment, but could you describe it? Absolutely. It's a very, very large red silk dress. It's made out of 86 different panels. And each of the panels has been embroidered by a different artisan from a different country around the world. And they are telling a story in that panel or what have they done on it?

So they were asked to communicate an image or a feeling or a story that they wanted to share. And I also asked that they would use elements of their cultural identity and their own colours and their own stitches and their own threads as well, just to bring that real kind of interest to the dress. And is it women who have done this? So most are women. It was never specified. Seven men have worked on the dress and 336 women. Wow. And what sort of stories or images

have have ended up being on this garment uh so a lot of the women that have worked on it are vulnerable uh recovering from civil war living as refugees living in poverty um so there's lots of very very poignant images uh from war um of peace lots of birds on the dress, emblems, kind of traditional emblems from different countries, very, very ornate kind of glitzy beadwork from Saudi Arabia, very, very kind of naively depicted, very bright colours from South Africa and just, yeah, just everything you can imagine is all on that dress. Would you say it's a sad dress, a happy dress, a hopeful dress? How is the emotion,

I suppose, from seeing it? It's everything. It hits you hard when you see it. There is a lot of trauma sewn into the fabric. There is a huge amount of happiness. There is comfort. There is connection. A lot of people, when they come to see it, may take a while to be able to approach it. And there's lots of tears. But ultimately, I hope it's uplifting. That's the point, is to inspire and to uplift and show what is possible when we come together without borders, without boundaries. Because that's the goal here. You want to do what with this, I suppose? Because where is it going to be on exhibition?

It's currently at the Fashion and Textile Museum in London and then it's going to be going around the world for the next four or five years to different museums and galleries all around the world. It's hopefully to inspire and to really remind people what is possible when we come together, working together, supporting each other, celebrating each other. And as an artist, it was important to you that those who contributed were paid, I understand? Absolutely. I did a lot of work without being

paid when I was younger. So no, very, very, very important that they were paid. And also, I have set up an Etsy shop, which is access, you can access it through the website so that the artisans can sell their work through it. and they get 50% of all the exhibition fees moving forward. So there's a real commitment to continuing to kind of provide and support the artisans who have worked on the dress. Is there a way to, I mean I recognise where some of these women are living in particular and limited means, but would there be a way of trying to bring them together in person? Oh it would be amazing, it would be incredible. My aim is to bring the dress back to each of the commissioned artisans to exhibit the dress alongside their work in their chosen

venue in their own country. I've done a few, I've done about six so far. So it's going to take me many, many more years to complete it. But I think that that's the whole point. Most of the artisans have just seen their panel. It was sent to them in the post. So yeah, the ones that have now seen me arrive with a film crew and the big red dress is quite an overwhelming experience, I think. But it's so connecting. So these women may never meet in person, but their pieces are next to each other.

They speak to each other through their threads and through their stories. And it's very, very powerful. Have you tried on the dress? Yes, I have. Yeah, a few times. Is it quite heavy? It is heavy. Well, it's very, very powerful. Have you tried on the dress? Yes, I have, yeah, a few times. Is it quite heavy? It is heavy.

Well, it's 6.2 kilograms, but it actually does feel a lot heavier. But what's the most amazing is when one of the artisans wears it. They often say that they feel, firstly, very connected to all the other women that have worked on the dress, but also very empowered, and that's amazing. Who put it all together? Who put the panels in one? Yeah, so initially I created it with two ladies in London.

So that was the first iteration. And then since then, over the last 13 years, it's been taken to pieces four times just to accommodate all the new embroidery because I never know what's going to come back. And sometimes it has to be reworked to rebalance just to make it kind of fit and flow so the final iteration was set in 2019 so yeah I've been doing most of the work since it was created in 2009. And I also understand that this was inspired by some of your travels where you've lived in the world. Yes, absolutely. So I spent all my childhood living abroad. I was born in Venezuela and moved to Nigeria, Japan and Holland, Canada.

And it's such diverse experiences, such contrasting experiences. Is this because of parents' jobs? Yes, my father's job. Yeah. And it was very normal to me at the time, but I am still kind of unsure where I really am from because it was just such a kind of patchwork of different experiences, colours, textures, languages. And I was always just so fascinated by identities, particularly women's identities. And the skill, I suppose, of what they're able to put together and create by hand. Kirsty, thank you so much for talking to us all the best with the traveling dress thank you thank you so much for having me that was the artist Kirsty McLeod and many of you getting in touch with with things

you've created organizations but I also have to say lots of you taking the opportunity to share your experiences or of views or times that you've really had trying to get decent education for those in your life for those who in your life have special educational needs for disabled children in your life some of the fights some of the battles that that have gone on andrea says i have a daughter who is two with a rare form of down syndrome with very little understanding where very little understanding excuse me me, of the condition exists. The resonance of Sammy's mum saying that the exhaustion of pushing for help

or navigating the system is an exceptionally difficult position. The adversarial nature of the system and the public authority's pushback and feeling like they're trying to defeat you is a very difficult draining process and hugely different to our experience of having two children

without any health conditions or other children there. Phoebe's written in to say, I'm listening, I'm 18 and autistic. I was diagnosed two years ago after already being out of education for a year and I've had to fight for help, but I'm always told I'm not disabled enough and it's breaking me and my family

that there just isn't any help. And so those messages continue, but I wanted to make sure we read a couple of them out because you've been so kind and so generous to share them. Keep them coming in on 84844. And also you can email the Women's Hour website. And we do do this. I know you hear it in the programme, especially if you're a regular listener, but we follow up on particular stories too. So please do give us all the details. And we'll see also where you're coming from in the UK and how the experience differs differs perhaps if it does.

And of course, as I mentioned, there's that consultation to contribute to. Now, my next guest has competed in races all around the world. Annika Onora is a retired sprint track and field British Olympic medal winning athlete. Now, after stepping away from the track, she's released a memoir called My Hidden Race, the one that you haven't known about. And it works on several levels, that title title as you'll understand in a moment but the book details her life and experiences as a black woman in international sports, some of which I should say is extremely painful and she's never spoken about publicly until now and putting it in this book. Annika, good morning. Morning Emma. Lovely to have you in the studio. Thank you for having me. It's a really deep and

detailed insight into the emotional and physical labour that goes into being a professional athlete. Do you think people realise quite what's going on? No, absolutely not. Yeah, I just wanted to give as much detail as I can from, you know, from my perspective. my perspective and you know I wanted to speak a lot from my experience because the general public watch you know the our sports athletics during the summer but they don't really understand what it takes to actually make it on the start line to make teams what happens at holding camps championships and then thereafter um so I just wanted to shed light on my experience through sport and also I mean it's just it's a very practical point and I know you didn't want to

sound ungrateful by by raising this but you know money isn't in abundance when you're doing this type of work is it how many jobs were you having to hold down at certain points gosh I lost count I lost count there was up to 12 at one point, but there was many more over a period of time. It wasn't obviously all at the same time. There was just due a different time period. But yeah, those four years, especially between 2008 and 2012, I was working countless jobs.

Alongside obviously having to be physically at your peak as well as emotionally on your game. This is also extraordinary. It's a book filled with extraordinary moments, but it's life, which I'm very aware of. You won a bronze medal in the relay at the Rio Olympic Games in Brazil. But 10 months, 40 weeks before that, you caught malaria. I did. And almost died.

Yeah, I did. Yeah. As you do, you know. Big smile across your face as you say now I look back and I'm like oh my gosh how did I ever recover from that but yeah that whole experience was just I don't even know what to call it it was um I think because we kind of were always very we go off the same timeline and we everything everything that we do in professional sport, especially in my sport, is measured by time. So when I was in hospital and I caught malaria and the doctors were telling me, you know, you need to, you know, just quit the sport, you know, just go and do a normal job.

Because it wasn't like a normal injury, like with Achilles or, you know, your knee problem or back. It was your literal health. Like I almost had organ failure because, you know, it was like my organs were just in a bad way. But I was just like, no, just so determined, so focused. And I just wanted to make sure I got myself in the best position to start back training. And you had to teach yourself to walk. Yeah, yeah, I did. I did.

I had to, like, because I hadn't caught malaria before. So it was literally starting from scratch. So a lot of rest, just walking like step by step and then started to fast walk and then light jogging and then build up. And then 10 months later, get an Olympic medal. Yeah, as you do. We were very proud. But I don't think people, I mean, did people know what you'd have to do to get back? Not to my knowledge.

The only people that knew were one or two of the medical team. So the team doctors knew because they were aware that I caught malaria. But then my coach at the time knew and maybe two or three training partners knew. I didn't want anyone to know because, you know, there was no guarantees of what the outcome could be, even making the team. And, you know, an Olympic year is the most stressful year for any athlete. It's so hard because you've got added pressure, added anxiety, stress coming out your ears. And if anyone had said to me, oh, Annika just had a bad year.

I didn't want that whole thing to be like, well, you know, she caught malaria. So let's just give her a blight. Like there was none of that. I just wanted to focus on making the team and making sure I got that medal. Part of, I imagine, why it's called, but you tell me more, the book is called My Hidden Race. What are you talking about there? A lot of, just a lot of stuff in general that happens behind the glitz and glamour of the sport. So when people would see me on the track, I was always smiling, happy-go-lucky, extremely focused. But deep down behind all of that, I was hiding from things,

I'd hidden things that I hadn't spoken about, like quite a few traumatic experiences that I'd had in my life through my career in sports. Well, I mean, the book also takes in your whole life at this point you know it's a memoir but you do talk about your childhood growing up in Liverpool and some of the racism that you and your family went through and often dangerous racism but you also talk about what went on professionally in that respect because after you won bronze in the 2015 world championships you noticed in the relay that there wasn't a single black female face among all the athletes

celebrated on the posters at the high performance center in loughborough where many of the tree team trained yeah and that was at odds with the actual reality yeah who was racing and winning right actually doing the work in that respect You did have a conversation and you raised that as an issue. Yeah. But it didn't go very well. No, no, it didn't. It was, you know, it was kind of looked at like, you know, you just want your face up there, you know, kind of laughed at. I wasn't really taken seriously.

And, you know, it was just extremely frustrating because imagine going to your place of work and you don't see people who look like you on a day-to-day basis but then they're not even given the acknowledgments that you know all these amazing black women who've been on the team past and present I'm like you can't even pick one like what is going on like who's who's running the show here like what it's for like it shouldn't have taken me to point out that the visibility in terms of, like, black female representation was just so low. Did you ever get a satisfactory answer on it? It took a while. It took a while.

The posters eventually went up, like, 18 months later. But, you know, it shouldn't have taken that. It should have been a case where, you know, these are the people who we've had on the team, past or present, you know it shouldn't have taken that it should have been a case where you know these are the people who've who we've had on the team um past or present you know um and it was never about me I never ever wanted to make it about me I couldn't care less it was about you know young girls young black girls coming into the training center well also reality yeah you know who was racing yeah and who was to be represented yeah and who and who's winning the medals. Crucially. Spoken like a true athlete.

Well, a spokesperson for UK Athletics said on this point, we are hugely saddened to hear of some of the distressing experiences detailed by Annika from her time as an athlete. It's essential athletes are supported to train and compete in environments that are free from prejudice and abuse. There have been significant changes to the approach, structure and culture within UK athletics in recent years, following governance and safeguarding reviews in 2020. The Athletes Commission was formed in late 2017 to ensure athletes' voices were heard in key decision making and are now integrated part of selection processes.

There's also an increase in athlete representation and diversity at board level. I know you care about that. It is essential that anyone who has experienced or knows of any form of discrimination, harassment, abuse or bullying to come forward at their earliest opportunity to tell us and to receive support and advice. That's from a spokesperson for UK Athletics. What's your response to the idea that there has been change?

Yeah, I I mean it's happening now but it shouldn't have taken that it shouldn't the 2020 obviously mentioned yeah you know it shouldn't have taken um you know me writing the book it shouldn't have taken you know Black Lives Matter you know the killing of George Floyd, Breonna Taylor it shouldn't have taken all of these things to have happened and in order to create change and you know even through the process of writing this book I kind of saw things from a different perspective like why I would question them not so much to give them grace but to understand like how did you get to this point how could you not how what led you to have the blinkers on for so for

so long and I guess it was just different things, maybe on their perspective. They live in their own echo chamber. You're not asking athletes to question. You're not having open and honest transparency between the athlete, the coaches, the senior management. Because it shouldn't have had to be like that.

It shouldn't have. Obviously, we are glad that changes are being made, but it's it's like okay let's try and be consistent with it yes i mean you also go to to the personal in this as well with regards regarding some of the really difficult situations that you you alluded to there when i asked you about the title my hidden race and you talk about the suffering of a terrible ordeal of fighting off an attempted rapist and being sexually assaulted by a medical professional who was meant to be helping you recover from injury. And that, of course, both of those instances leaving behind dreadful mental scars. It must have been incredibly distressing, both of those instances, all of those instances. But then also I imagine writing about it.

Yeah, that was, you know, very extremely tough. I think I just suppressed it for so long. And I think what led me to actually talk about it was just, you know, thinking about things that had happened because I have a training diary and I know where I am like any time of the year, you know, whether you're warm weather training or whether you're on a holding camp or a championship you know where your schedule is so I knew that particular moment in that year where the two incidents has happened that was just something I just couldn't that that would always come to the forefront every so often and I think it got worse and through the

later years of my career and then more so towards the end so 2019 when I you know finally decided to retire and yeah just kind of reliving those traumas and you know you remember everything you know you remember the the time it happened and you remember the smell um you remember faces you know you start to stuff. And it was hard for me to deal with, but I just took it day by day in terms of how we get, you know, the story across and how we frame it in a way that, you know, I didn't want to skip over it. I wanted to tell it in the most authentic way.

So, you know, although there are some, you know, pretty traumatic experiences I've been through, there are also some happy moments as well, which I hope people laugh at and enjoy. But when I talk about the detail in terms of the sportsman, I wrote it, I was very specific in what I'd written in the book because I remember everything to this day. And it was important, I suppose, for you to get everything in that you could. Yeah. If you were going to go there, you had to go there. Yeah, yeah, I had to go there.

Well, I mentioned now that you are retired, which is always a funny thing to say to such young... So weird. You know, very fit looking individuals as athletes always are. And I mentioned there about board membership and governance. Is that where you see your future? Looking at doing some of the things that you want to improve around sport generally? Yeah, I would love to continue to do that. I'm inspired by so many people who've, you know,

led the way, led the path for change. My brother, Ifem, who's a, like, he's just been my idol since day dot. And he was a former footballer and he was head of the PFA. And now he's head of DE&I at the Premier League. And he, when I was, you know, discussing different roles in terms of what I could do and how to kind of learn how to get board membership. I did a course during lockdown about learning about corporate governance because you can't just sit on these boards and not know, you know, what the lingo is,

you know, how to make key decisions, how to challenge people. Well, even DNI, you know, people listening won't necessarily know all the acronyms. No. About diversity and how the training works or anything. Yeah, yeah. And I think it's important to highlight that.

But more so from an athlete's perspective, not just someone who's just been on the same position and, you know, just the same faces. Like, yeah, I want to offer a different perspective. And it's not necessarily in sports. It can be in any walk of life, whether it's business, corporate world or whatever. I just want to be able to use my voice and add value wherever I can. And do all of that. Well, My Hidden race is the name

of the book Annika Onora who is who you're listening to I mean this is a really silly question but do you ever still race does anyone ever try to take you on all the time no no I don't run but people say always ask me or they'll say um what was it I saw someone asked me yesterday oh I know your face from somewhere. And I'm like, really? And I'm like, okay, that's nice. Like, oh yeah, yeah, you look fit. You used to run. I was like, kind of.

Like, I go to the gym every now and again. But it's nice. It is flattering when people ask, oh, do you want to race? And I'm just like, honestly, I'm tired. Have you ever taken them up on it? Absolutely not. Especially if I'm in heels.

No way. No way. But it is fun. I love that. Thank you so much for coming to talk to me and to all of our listeners. Thank you to you for your company. We're back tomorrow at 10. That's all for today's Woman's Hour. Thank you so much for your time.

Join us again for the next one. Uncanny is back. The hit paranormal podcast returns with a summer special that will chill you to the bone. It was a real dream holiday, really. The family trip of a lifetime becomes the holiday from hell. Whoever was in that room wanted to do us harm. They wanted to frighten us.

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