A - Understanding Anti-Racism in Co-Production Spaces: Centring the Voices of Racialised Individuals

So Can I get you to introduce yourself? Yeah. Hi. I'm Sarifa Patel from Newham. I run two groups in Newham

One is called the New Disability Rep Forum with my co-chair, Kristine Goliak. One is Parents for Inclusion, which I run voluntary because, um, I used to work for a charity called Parents for Inclusion. We lost our funding in 2012

Um, and I've just kept it going, really, because there's a need and there's a gap, and nobody's addressing it. Again, most of my women are from women of colour and minority women and disabled with hidden hidden disabilities such as mental health or physical health, that's not visible. What's your experience as a um South Asian global majority woman in relation to co-production? Um, it's really bad, to be honest

Um, I'm often having to challenge the local authority, um, around their practise, around the institutional racism, disabilism, and inequality. Um, and, um, they say that I've got a label now that I'm too challenging. And how does that make you feel? It makes me feel crap, to be honest, but I just try and rise above it, um, because I know that I'm, I'm the social model of disability thinking and they're the medical model

Um, and I want to live my life as a social model of disability, so I just try and ignore it. But sometimes it does get to you and it it affects me because it makes my lack confidence or that my self esteem or uh make my mental health worse. And can I ask you about When you raised the, the issue in co-production about race and racism, how does that go down? How do people take it? How dare you call my officers racists? We are not racist

We have training. Um, how dare you? You know, and I was asked to step down from my role as a co-chair. Because I said it out one day in a big co production meeting

And then I went away on holiday and all my good allies. Stood up for me and told them that, thought you dare ask her to step down. Who's asking her to step down? You step down

So I was really pleased by the time I come back, they wanted me back. So they said, You didn't even respond to it. I said, No, because I knew that, that I wasn't, you know, I wasn't speaking from my voice

I was speaking from my group members' voice, because they don't have a voice. And I was expressing them. And most of my good allies that known me for years, they know that I was expressing their voices, if that makes sense

Yeah. And how does racism affect the people that you're co-producing with? Um, well, my service user, if you mean my service user, they never get the social care right. They never get offered, um, direct payment, um, they never get offered

You know, like choices. They always get put off, um, saying that there's going to be a financial cost to it. They also get put off saying that we'll send males if they're a woman, to help you with your personal care

So like, Muslim women don't like men working with them for personal care reasons, and other women don't as well, black and ethnic minority women and white women. Some of my white women friends don't want male workers. You know, they don't feel safe

So it's about choices, but no, they don't do that. So then I have to threaten them with the Race Relations Act, and then they'd have to back down. But they don't like it that I know all this, if that makes sense

And that I use it well to stick up for my members. And, um, I, you know, I challenge them, and that's why they call me too challenging. For my own case, um, because of my disability hate crime that I face, um, my whole family, um, they said that I, they've allocated me a senior manager, but yeah, he's understood none of my intersectionality

Barriers is not understood on a base violence at all. He's not believed me, because he just thinks of me as a mental health service use because my hidden disability is not visible. He doesn't believe that I'm in pain most of the time

I put up a front. I'm an autistic person, I feel, and, um, they've not given me the right diagnosis. Um, and I mask a lot, so they think that I'm lying, I'm a fraud

So it's all those things that you have to challenge. Yeah. And now I've known you 20 odd years

Yeah. How many people like you are leading co-production, doing co-production, like. Yeah

Lots of them. Um, there's a lot of people of colour now in the co-production. But what the thing is, it's not, it's not having before, right? There was a lot less of us with, uh, with the co-production team

Now, there is a lot of us, but are they really listening to us, or are they really changing their attitudes? No, I don't think it is. I don't think they're understanding the racism part of it. I don't think they get the Islamophobia part of it

I don't think they get the gender issue part of it, the disability part of it, especially if you've got a hidden disability that's not visible. That's always been my problem, and especially where I've had a mental health label. I've been labelled as a munchin by a proxy mother when I've been caring for a very acutely ill son

But that's what they've done to me. You know, they've given me a wrong label. And that's all they see, you know, that's what my colleagues have told me that that's all they see of you, is that you're that wrong label

But it's trying to get over that is, it's very challenging. Why do you keep on fighting for social justice, knowing that you're the educator all the time? What keeps you going? Um, because I want things to change, Isaac. I, I don't know, you know, that's, that's part of me

I, I believe, you know, that's part of maybe my autism or whatever. I don't know. I just want a better world

I want equality. I want justice for the wrongs that they've done to our communities. Um, I want justice for my women because I've done my own research on disabled women of colour and the impact of the inequality and the racism, and the disabilities and the gender issue

We've lost 20 years of our life. To that negligence. That's the impact on us, but not just on us, the impact on our family members, they've lost that as well

So it's just not on us. So that's why social justice matters. And it matters because we've got to change it

Something's got to change. This is 2024. Bloody hell

You know, we've got inclusion and diversity. Well, where is it? And when you are in co-production spaces. Yeah

Like how do you think? Race plays out in that, like, so I know you said like people might take your ideas and use them or not listen to you, like, can you give some examples of like what we should be watching out for? Well, in the past, I was like, I brought up issues around disabled mothers of colour. We were the first, and this is a non statistic, right? That there are more black disabled women and ethnic minority women put on child protection. Than mainstream white women with disability, yeah

And our children get adopted or foster cared more than they do. So our family's broken apart. Yeah

There's statistic to prove that. Um, what was, uh, could you repeat that question again? Cause it's. Like, you, you said, like, sometimes you bring up ideas and it gets ignored, but your white peers might say the same thing and it gets it

Yeah. Yeah. Yeah

Well, it's that. It's like, um, when, well, I can give you a scenario, right? When we first started the group, me and Christine, when I mentioned about this client of mine, and, uh, the, she had mental health needs and physical health needs, but all they looked at was the mental health needs. Until me and Christine did the, um, um, home visit

Then Christine, who's a white person, talked about it. She managed to get that family support straight away like that. And I've been trying for the last 2 months to make it happen

Now, to me, that's the, or that's the racism, because why was my voice not valued just as much as Christine's? When we were doing the same jobs, if that makes sense. Why did I need a white person to be with me? For my voice to be heard. Does that make sense? Yeah, yeah, and thinking about like what needs to change in co-production, what would you say needs to change to ensure that we are making co-production inclusive? Um, I think we have to have leaders from the black communities

Um, we have to have them accountable to the negligence. Um, and the injustice that we, our communities have suffered because of that. We have to have that

Um, and that's why justice, that's why I think I'm pushing it for my 25 women, the justice thing. Because I feel I can't, you know, one woman not made to feel like she's the problem, that's. I understand, but 25 of us saying the same thing, surely that shows you that the system is not working

That's evidence. That's quantified evidence to show that there's some issue here and that you need to find out what the issue is. And to me, my group, specifically, it's the racism

Can I ask you, do you feel like you have the same opportunity and experiences as your white peers around? No. No. Never

To be honest, um, my lived experience has been so discriminatory. Um, I got injured with my disability, 14% of my disability in a special school, where I slipped a disc when I lifted a child. Right

Few years down the line, I knew another nurse nurse white colleague, and she got injured. She was offered a lightweight job straight away. She was offered in this little injury straight away

I was told of nothing like that. Yeah. Um, so I've missed out on my industrial injury

I tried to get it back in 2012, but again, both of my loved ones fell ill. So when it came to the tribunal, when I went there, uh, when I was supposed to do, I couldn't go because they were hospitalised, so I had to deal with that. So again, I've missed out, but this is what happens because nobody supports us through these kind of things, if that makes sense

But if it was a white colleague and they went through that difficult patch, there's a lot of support out there for them. Now, I've had discrimination around accessing support and care needs for my son who's finally been diagnosed with autism last year. Yeah, and I've been saying it from when he was 10

Look at the discriminative practise there. That's a lot. I'd had it done privately, and they still wouldn't believe me

And, and because of that, in 2022, out of the hospital where they didn't make reasonable adjustment, they called the police on him because of his behavioural challenges. And then that caused me an angina. How can I let them get away with that? And if I do, I'm just letting the system abuse my people who haven't got a voice

Does that make sense? Yeah. So there's this everyday kind of uh experience of racism and like co-production, we often talk about being in relationships as equal partners, the values. Do you think these values work for black and brown? No

No, no, it doesn't. We haven't got there at all. Not, not, I think we're not even quarter way there

Maybe a third. Not even quarter. Because if, if we had, right, my women's lived experience and, and their children, I've got a family that I support, and it's now going to the Sean generation that they're being in prison wrongly when there's a need for support

Does that make sense? And it's just because of pure racism that this is going on, because they're not getting the pure, uh, right diagnosis. They're not getting the right care and support. And then the mom's made to feel like, you know, she's the problem

Again, she's got a disability, not feasible. So again, you know, this whole cycle, and it's now from her mother to her. And it's just going intergenerational, if that makes sense

And, and nothing is changing. What's changed? Yeah, I don't know. Like, we, we know, like the mental health wards were full of black and brown people 20 years ago, still the same

And, but we do this work because we want to make a difference. When our white peers listening to these stories, what kind of things could they do to support us, making sure co-production's anti-racist? Well, they can join us. It's like um

Like a few weeks ago, um, when Northern rights happened, I was supposed to take my group out. To, um, South End. And I worked really closely with my colleague Christine, and we get on so well

And she couldn't understand when I said I wanted to cancel our outing because I didn't feel safe. My woman didn't feel safe. They rang me up and said, I hope you're cancelling the event, and I hope you're not going to take us on that day

And I said, well, to be honest, I've been thinking of cancelling it myself. So I hope, you know, I rang them all up and said I was going to cancel the event because I didn't feel safe because of Islamophobia, because of the way people were towards black people and Asian people and everything. So I didn't want to put us at risk

When I was speaking to Chris, she couldn't understand why. In the end, I had to really basically explain to her, Have you ever been called Hay, go home? I said, I've had that. Do you know how insulting that feels? When actually, I've been brought up here for since I was 3

So to me, this is my home. But yeah, I'm told I can go home. So I retaliate, I've always done one as a child as well

Get it right, I'm from India. Do you understand that was why my way of fighting back. But uh to me

Years ago, when that was happening to me as a child, it's still going on now. I'm still frightened of when these riots happen, of going out. I, I was so frightened in 9/11 when that happened

My son was so scared for me, Mom, don't wear the hijab, don't wear the hijab. You know, and I, and I have had, you know, I have had somebody pull my scarf. I have heard somebody say that you're smelly

I have had those kind of abuse. It's not nice, Isa. And even recently, even recently, right? I was helping Stephen Timms, our MP in Istan

But because of what the labour policy and this um thing with um Palestine, and the labour not stopping it. I was told, you know, I was abused by my own person saying, how can you support them? Do you understand? And in the end, I got too much for me, so I had to reach out and ask for one of my colleagues to come and, can you please sort him out? I can't take it anymore. It's hard Yeah

Yeah. So sorry, like that's your experience, and I was like thinking about like when, you know, we're in the co-production collective or we're in our co-production meetings, how safe is it to speak out about racism? Not really, after my experience with like, with having to step down from the co-chairing, but I, I say as it is, I'm autistic. I can't help it

Uh, I just say it as it is, whether they like me, love me, or hate me, I, I'll tell you what the reason, a few years ago, what the experience was, is I'm sure that they used to stop my mic. Do you understand? It's only until uh until a friend, you know, I told a friend, I said, I'm sure they stopped me from speaking because that's the way they can control me, because I see it as it is and they don't like it. So they wouldn't put my mic on until I noticed and I'd say to them, excuse me, can somebody switch on the mic? Oh, I'm not being heard, or I'd write it down on the chat

Do you understand? And then they call me challenging. That's the worst part of it. I look who does what, the bullying, the, you know, everything

And then they call me challenging. So it's such a shame that it's still always going on and I'm just like wondering about why you wanted to share your story around your experience of co-production. Yeah, I'll tell you why, because I really believe that unless we talk about our lived experience and unless we educate these people, the impact on it on our lives, our children's life, and how our children now don't feel that they belong in a country where they were born

What a horrible feeling, Isaac. You're born in this country and you're still made to feel that you don't belong here. That's horrible

And remember for the black community, they were brought in as slaves. Yeah, look at the history. Look at our history, look at our history, the Asian history, we were brought in to work in the factories because nobody else wanted to do this shitty work

Yeah. And yet they call us lazy. And how many co-production spaces have you been in where they've talked about the legacy of slavery or the legacy of colonialism? Not much, not, not much

You don't hear that. You don't hear that. It's, it's same with the disability movement, and that's why I used to press for the disability history

And that's why now I do press for the Black and Asian history, and I think it's important that we educate our children and we build our children's self-esteem and confidence to fight back. To say we matter. We've had a hell of a history

And you've always talked about like co-production being like an agent of change when it's done like. What do you think that we could learn? About how we need to do co-production. Well, I think we need to do a lot of training on it

We need to tell them how their negativity or the institutional racism. And the oppression affect our well-being. Because in reality, it affects our physical well-being, it also affects our emotional, psychological, mental well-being

But nobody really wants to talk about it. Because they know it, they know it does. I'm sure they know it does, but it's a way of keeping us a price

And you know, like when we raise our hands, like, get ignored or. Yeah, yeah. They mute you

The, the, the things with the zoom now is they mute you when they think you're too challenging, they mute you. That's the new one. That's they ignored their hands and had a muts, which is true

Oh, what's even more funny is, you know, like we have brown hands on the zoom. They got the brown hands and then they say they can't see them. And I was like, zoom's even racist, you know, and

But you've got to remember who made it, who made it, Isaac. And who, how to, when a lot of people are gonna find these kind of conversations difficult, they're gonna say that we're, we're talking, this is not true, it's very dramatic like we always get. Well, we've got a chip on our shoulder, that's the other thing I, I've learned

angry at the system because you feel it's failed you. So how do we have difficult conversations with our white peers about co-production, and the final question after that is, any top tips? Um, can you repeat the first question again? Cause it's how do we have difficult conversations with our white peers? Everyone says, Oh, they're too difficult, it's too big to change. How do we have these conversations? We have to be honest

We have to educate them on how it made us feel, their comments. Um, just like I said, you know, like when I talk. And I was scared to go out

2 weeks ago, 3 weeks ago when those riots were happening. Um, and I had that conversation with Christine, my colleague, and she was saying, Oh, no, we don't have to cancel it. It's not gonna, it's gonna be all right

I said, No, but my women are scared. I'm not gonna put, I'm not taking that risk. You understand? And we have to be honest and say, it might not be a risk to you, but to us that are living it, is a big risk

And we can't, you know, we can't take that risk. It's taking. And the thing is, maybe to understand them that how, uh, when they make remarks like, go back to Pakistan or, well, actually, that's very hurtful, very painful when you've been brought and, you know, brought up here

Do you know what I mean? When you're born here, my sister was talking about it recently. You know, my sister, right? One of my sisters, Isa. Um, as a child, right, she got so tired of her sticking colour because of these racism remarks that she went to scrub herself white

Now how can we be damaging our children like that? Terrible and I remem I, I always, I'm just gonna say something that has been said about both of us, I've always, Remember how like we've always been storied up as uppity or you're too outspoken as an Asian woman, those kind of thing. What impact does that have on you like. I feel like shit sometimes

I, I can't be honest with you. I do feel, um, you know, that maybe I am the problem. Maybe I am too challenging

Maybe I am too different. But then I have to do a lot of work on myself and say, actually, you know what? That's their oppression. They're trying to control me

They're trying to, you know, not let the work that I'm doing. Yeah, so I have to do Psychological work on myself, to say, don't let them get in. That's their tactic

Yeah. And what did it feel like joining a space which was just for global majority people talking about racism the other day? Yeah, no, that felt good. That felt good because it gives us a bit of hope

That actually, um, together, if we were unified, especially as black and ethnic minorities, because you've got to remember, even within our own communities, we've got that as well. You know, like, um, I go to black and I go to Asian meetings, but the black, um, people accept me, but the Asian people will say, well, I'm not black, so I want and I have to educate them and say, well, we are, we're, we're facing the same barriers, same as like a carer, right? I was in I was in, I was wearing double hats, so I was a disabled person and a carer. But they were saying the carers were saying, no, you, you, you can't be a disabled person and care, but I'm both

And then that's why I had to start my group off because I wanted to be inclusive and say, we can be both because our struggles in the disability movement are the same as the carer's movement. So we need to come together and unite to make sure that we're strong together to bring the change we want. If that makes sense

It does absolutely. Any top tips before we come to an end? Any top tip is, um, we've got to keep voicing it. And we've got to keep educating our community, and we've got to keep empowering our communities, because I don't think our community have got the skills and the knowledge to fight the system and the racism

Until we do that. And no, and, and, and give them the knowledge of their rights, um, and our history, the younger generation need to know our history. Challenges we've had

Yeah. And that's the only way we're going to change. And we have to build up these allies with the white community to say we need you as allies

Please be our allies. You know, we shouldn't have to say please, and we shouldn't have to beg, but we should, you know, we should have it automatically that we're working at it together. Just like the disability movement

You know, this is something that's really Important Especially in this day and age, you know, look at that killing, um, you know, look, it's, it's wrong. Every life matters. And that's why we do what we do, right? Yeah, yep

Thanks. Thank you. I I was there if that's OK

Yeah, that's brilliant. Thank you.