Amo talks about CoProduction

So you might get a recording sign. You have a better office than I do. um, first of all, can I get you to introduce yourself and tell me a little bit about what you do and what you're passionate about? OK, uh, my name is Amma Raju. Uh, I, by day I'm the CEO of a user-led charity in Derby in the Midlands called Disability Direct

I've been doing that for just under 30 years. Um, um, I'm a disabled person myself, uh, of South Asian origin. Um, and I am I I wouldn't call myself a campaigner

um, I, I am probably more of a, an educator or or somebody that will sit with people and discuss, uh, and, and will always agree to disagree rather than get get up anybody's nose. um, so I kind of. Um, I, I, I do a lot of at the moment, I do a lot of, um, keynote speaking, um, presentations, workshops

I'm an author, uh, of a book based on my life story of as a disabled person from the South Asian community and, and the issue of race and disability, very prominent in that book. Um, and What else am I? I'm a business consultant as well, so, uh, that's me in a nutshell. I'm a married father of 3, grandfather of 2

Same. Learning things that I never knew. Granddad, that's, um, interesting

So, thank you for sharing a bit about your life. I'm wondering what has your experience been of co-production as someone from a racialized background? Co-production, that that that word for me has been around for, I would say just under 20 years when that's when it first started getting bandied around, and it was mainly by local authorities that first um wanted to sit down with the likes of me and my peers. With an with an idea of of how they possibly want to change amend or completely overhaul a service

Um, and My initial reaction towards it was brilliant, this is great, this is, you know, this uh an equal partnership around the table where we can influence a direction and a conversation. But I soon realised that it was. Very one-sided

It was, it was. If I'm right in saying, um, forgive me if I'm using the wrong word, but at that time I described the whole concept of as quite flowery. It was, it was very well painted picture, but not in action

It did, there was nothing in there that was really um. My first experience of it was around co-producing a self-directed support for disabled people. And I found it to be a a a

A scenario where whatever myself or my peers were saying around the table. The commissioning body, the the co-producing body. Had their own agenda, and they were desperate for us to almost rubber stamp whatever they were saying, rather than come up with a joint plan

Um, the Oh, the, the, the second experience was where we'd we'd sit round tables over several meetings and and months and, and, and, and with flip charts and and diagrams and, and, and etc. of how things need to be um. Changed for, for, for the likes of disabled people and minority communities in general

And afterwards, what was the final document that was presented didn't resemble anything of what we'd discussed. It seemed to be little snippets of, of, of some of the, the things that we'd we'd mentioned, but primarily focused on whatever there was the local authority agenda. Uh, so I've not had the best of experiences of a co-production

Um, I think it's a great concept, but I don't think it works. Um, it may work when you have two like-minded bodies. So if you have two voluntary agencies trying to come up with a joint partnership in, in, in delivering a project or a service

It, it, they're more likely to come up with a a a a a mutually agreed end end result. Um, but where you've got David and Goliath sitting around the table, it, it, David always wins, and that, that's where I kind of struggle with it, and I'm seeing a lot of it at the moment with the NHS are, are, are starting to jump on the, on the co-production bandwagon now with um. With integrated care, with health and social care, and they, they keep being advised to co-produce services

But again, it's. a lot of tick boxing going on, uh, forgive me if I sound cynical, but I, I, I don't. I, I don't think it's worked where it should work, where it has worked is where, as I say, the two like-minded bodies are trying to deliver a project themselves together rather than

Um, with, with, with bodies that are, and, and, and playing devil's advocates sometimes local authorities or public bodies such as the NHS they're. They're wrapped up in legislation, uh, so no matter what their best intention is to try and co-produce a plan, the default is always whether the law allows things to be delivered in a certain way or projects to be planned in a certain way, you know, so it, it, it, it, it may not always be practical for whatever we come up and then that raises expectations and and increases disappointment. Uh, um, and then you'll find the likes of disabled people and minority communities in general will just would not want to come round the table again

They'll just say you wasted our time and. You know, they sometimes they try it with the next generation of disabled people the benefit of being doing this job for 30 years. I've seen these scenarios played and replayed over decades and it's the same thing, the same people, so normally the same commissioning bodies or, or, or bodies in control of the conversation, trying to reach a different audience, a new generation of the audience, but the, the, the limitations are the same

How much do you think, so in terms of someone from a racialized background and a lot of your work is with diverse communities, how, how much of that plays out in co-production spaces? Um, I try, uh, I mean, I, I, I work for and I run a user led organisation. So everything here, there's at any one time there's around 25 to 30 projects running, and they are all co-produced, they in fact they are. Um, disabled people come to me and say this is what we want, and then I'll try and go and find some funding for it

But then even then I say, right, you are now the steering group of helping, um, um, implement this project, um. And, and, and, and so on a day to day basis I live and breathe co-production. But uh if we're using it in the, in the, in the wider world

Um, not so much, um, because I think that certainly in the region where I live and work, you know, co-production isn't, isn't mass. I know it's big in London, but it's not, it's not big down well up in the Midlands because it's something that's been tried and tested and and disabled people are just that, uh, disheartened by the process, that disheartened by the. The, the previous outcomes that they, they, they think what's the point? You don't listen to it, so why do you want to keep asking us questions? The concept of consulting disabled people and consulting um racialized communities here in, in, in, in the city where I am, it's

They just not playing ball, they're just saying we, we, we, we've had enough of that, um, you know, and, and I always struggle now as a, as an organisation to try and, uh, float and, and, and a new. Project be if somebody approaches me and said can you get. Um, minority communities around the table, or can you get disabled people around the table or carers around the table, um, and, and, and we can, we want to have a conversation or a discussion about something

I'll be lucky if I can get half a dozen people around the table because there is that. Disenfranch or disconnected with the whole process. And do you, so you've been doing this for a long time, so what do you think has led to people not trusting or being disenfranchised with being invited into co-production spaces, particularly like those that are disabled, those that are from racialized communities

I think it's, it's, it's experience of the lack of results in the past. Uh, it's, it's, you can use coro and so if I'm uh uh one of the very first times I try to get um There was a, there was, there was a conversation around getting Uh, people from the older, um. Asian and black communities around the table, uh, I can't even remember what it was about, but I can remember having to explain what co-production was to them in a different language

uh and that wasn't the easiest thing. Uh, when we finally got over that hurdle and, and they understood what I was trying to, to do with uh with the health authority at that time, they like, they said, yeah, fine, listen to us, I think yeah I think it was around. Um, Community outreach for health, uh health improvement programmes around diabetes and hypertension, those kind of things

Um, and you know, some of the questions that were asked. We're almost, almost promising that there may be change. You know, you'll have better access to GP appointments, you'll have, well, you know, so people's aspirations and hopes started getting a bit higher

Uh, and Well, after, after it happened. It wasn't the health authority that got it in the neck, it was me. You know, if I bump into those communities, those people, if I'm shopping in Asda or wherever I shop, and people saw me and said, well, you said this was going to happen, and, and we've not heard anything, and they, I, I spent, you know, 5 or 6 days of my time working on this uh project with, with, with your, my organisation would get blamed, uh, that you

Connected with us and you promised it, and I said look I didn't promise anything, I just wanted to get you around the table. But as I say, sometimes the way those questions were shaped, it was almost as if they were promising communities some kind of change. And then when the change doesn't happen, the messenger gets kicked in the backside

And how much do you think race and racism plays out in these spaces? I, I, I don't believe anybody, any anybody purposely tries to be racist. What I do believe is that ignorance will um will, will, will. Would, would become quite uh prominent in in

When they start putting the conversation onto, onto a document. So if they've co-produced something with, with the community from, from the black or or Asian communities. You know, the, the race becomes prominent when

Um I've, I've always found that when, when, when, when, when you're looking at. Health or local authorities speak. They have this get out clause almost as if they revert back to the national profile and you know, and COVID was your classic example where

Well, yes, nationally, uh, older people from uh the black and Asian communities had uh uh were were affected by COVID much more than the, the, the mainstream white communities. So that's the national picture. So well that may be the national picture, but you've got these people around the table and you've asked them about your experiences of the pandemic and COVID, uh

And so you're not addressing the fact that that that racism played a part, that when the messages from the government were coming out, when Boris stood at the front of the and and gave messages on a day to day basis about uh the pandemic. There was nothing being translated into other community languages. And for example, my parents would get their updates from the Asian news channels, which were always 24 48 hours behind Sky News

Uh, so they were getting old information. Um, and they would. This, this issue around the black community not being prepared to be vaccinated, uh, when they, when they finally came up with the vaccination

That was uh almost. There's a lot of ignorance in that uh belief where they thought, well, OK, well the black community are just apprehensive in general. No, it's because you've not addressed the mistrust between the black community and the NHS

Uh, that has gone on for decades. You've not addressed that elephant in the room, you've just gone and, and pigeonholed that while the black community need a bit more persuading than normal and so. I think it was ignorant

I don't think it was blatant racism. There was a lot of ignorance that that is being played out and no one wants to um. Address that ignorance whether it requires training and retraining for people who work in those fields or whether it's an investment in community cohesion or something I don't know

um, but those issues are always going to be there um because the, as I said, we've not addressed the element in the room. So this really resonates with lots of lots of other people have said. So if we were gonna dress the elephant in the room, from your view and perspective, what would that feeling look like? So how do we make co-production more inclusive? Co-production needs to have, and I see there's in every community, um, and I'll go back to the pandemic as a classic example, in every community, there are community leaders

There are and now nowadays not necessarily leaders but very prominent, very visible people in communities, whether they are uh people who are uh uh standing in the front of the church, giving sermons or whether they are um. Or people who are just in my community here in Derby, the South Asian community always like to wheel me out and and and give a speech on whatever is the issue of the day just because I'm a trusted source. And when it came to the pandemic

The vaccination issue is, was, was a classic of of how the government thought, well, we'll just stick Lenny Henry and Mira Syel on the TV and they'll persuade the minority communities to go and get vaccinated. And my argument at that time to the NHS here locally. Was you've got to, you've got to get, get me out, you've got to get people like me out who are trusted sources out there if you want people to be vaccinated

Um, well, we've been to the mosque and we've given it, that's what I said, do you know that the the imam at the mosque is an anti-vaccine? So how's he going to persuade the public? So it's, it was just. Not using the community resources, it was going back to that, those traditional methods of, of getting a rolling a celebrity out and they'll persuade people. So that's where the disconnect is in terms of trying to co-produce a plan

I'm really curious, like, so you talked about having to translate and make co-production accessible for for different communities. But what I know of community is that they do co-production every day, they just don't call it co-production. Um, like, what's your view in terms of, cause how do we have some of these really difficult conversations with people that are applying maybe a Eurocentric lens or, you know, a national process to co-production? How, what, what kind of conversations do we need to have? Um, they've got to be open and transparent conversation and right from the onset, people need to be told that

The end result of this co-production conversation or session or or or programme of events that we're doing to co-produce something may be zero change. It's just us getting your views. If, if we, for example, next week here in the city of Derby, the council has asked loads of carers, unpaid carers to come together to hear their woes, what's missing in their lives

And I've warned the council that you're gonna get 20 or 300 people in a room, you'll put on teas and coffees in a buffet for them, and you'll, and, and what will happen is you're gonna hear their frustrations. And they're going to expect, they're going to expect something. Your opening conversation right at the onset is there may or there's a good chance that there will be no change

We just need to hear what's going on in your lives. If you're, if you're honest from the, from the onset, their expectations won't be so high, um. Because as you know, I, every local authority is claiming virtually claiming bankruptcy so they can't they can't produce results for the, for the community

So co-production at this moment in time is, is almost meaningless because whatever the outcome is required finance to to change things. um and so. There needs to be that certainly mentioned, but

As you said, you, when, when co-production is a word that means something to you and me, but to the vast majority of the community, it's just sitting in a room and having a conversation. Uh, but even when you're just having a conversation, be prepared to hear views. I've sat in rooms where professionals have come with their clipboards to listen to views

They don't like what's being said because it's almost they take it as a personal attack on their, on, on them, uh, and, and. So it takes a certain type of individual to actually be the the. The public body representative

Um, to, to actually to, to absorb that frustration and then trying to channel it, channel it into meaningful words which in a document which, which helped shape. Uh, uh, a project or a service or or or a change of direction. I'm wondering about, like, we started off talking about you, who you are, Granddad, got a book, all that kind of stuff

Has race and your racial identity affected how. You've worked, maybe you've experienced the world. Um, tell me a bit about your book

The book was was primarily around. Prejudice um within. From the non-disabled world

But then the second tier was prejudice within the South Asian community towards my disability. Um, and, and again ignorance, um, and. It's about

Uh, in a nutshell, I was told as a child, my parents were told as a child that your son won't come out too much. He's got cerebral palsy, he won't come out too much, don't have high expectations. So from time after time after time, the, the professionals, whether it was the education authority or whether it was social workers or whatever, tried to pigeonhole me into what their expectations were of me rather than um than what I actually ended up doing and

The Frustration is for me that, you know, when you talk about um prejudice. It comes from all directions. We just, we see we have seem to have this view a lot of when I talk to the white community about prejudice towards my disability, they find it strange that the South Asian community can have a prejudice towards disability as well

And I find that strange that they think that because I think well they they're just as ignorant as everybody else, you know, it's prejudice happens comes from all directions. Just because they are a minority community doesn't mean they're gonna favour um. Um, disabled people more than you would, it's just the fact that, you know, they, they, they need educating and in fact they need educating more because they, their level of understanding of disability and the social model, etc

is next to zero. They're in they're in almost a mediaeval time zone when it comes to understanding disability and expectations. So, um

The book focused on those two issues, but the interesting thing, Isaac, but when, when that book was published in late 2021, I was almost ignorant, um, up until a couple of weeks after publication because my, after the, the book became an Amazon bestseller straight away um and. Scarily, I had dozens. If not hundreds of emails from and WhatsApp's message, social media messages from disabled people from racialized communities across the UK saying what you went through as a child

Uh, or a teenager in the 70s and 80s, we're going through now. Nothing has changed, nothing's changed for us. We're still, the world is still ignorant, it's still prejudiced, it still discriminates against us, we still don't have a voice

So, you know, finally somebody is telling our story, uh, and the scary thing about particularly when it came to the the South Asian community, that the, the, the examples I gave of, of ignorance and prejudice towards my disability. Um, it was, I mean, one short example. In the South Asian community, you know, I can walk down the high street today

In a white area And white people will not stare at my disability, they just look at me, say he's disabled, and they carry on about their own business. I can walk down the high street. Uh, where it's predominantly, uh, um, uh, non-white area

And I get stared at constantly and I'm walking like, what the hell, what's going on, what's wrong with him? What whoa, what's he doing? It's, and it's, and that was constantly repeated in the messages that came back from from everybody who read my book. They said it's so, you're so true, it's nothing's changed. We can go into a white area and our disability is irrelevant

When we go into a non-white area, we are almost entertainment for them. Um, and, and that shows you. There was a need for the book and it's still popping, you know, they're talking about turning it into a screenplay now because it's, it's not popular and it's, it's certainly struck a chord with uh

Around disability and race, and I've spent a lot of my time now on the circuit doing speeches about disability and race rather than just disability, because the people are actually interested then, OK, there is a conversation to be had about that. What, so, we've got the challenges of, um, othering from within our own communities, then we might have the kind of challenges that happen because people don't have the same racial identity. And what kind of impact does, do you believe the, these multiple experiences have on people, disabled people, intersectional people? Well in my own case, I can give you my own example, and this, this I know has been repeated in my own case, I had the secret battle with depression

I had, I ended up in therapy because I could not cope. er I did not have the formula. It was only about 4 years ago that I that I had that 4y moment, you know, that the that eureka moment where I felt

Oh gosh, now I know how to deal with this. Well, up until then, I had 30 years of secret therapy sessions, uh, where I was, I couldn't even talk to my wife, uh, or my children or my parents or siblings. Nobody knew

And that is being repeated across the UK where people are suffering in silence. It's called, they're internalising their frustration, and they're feeling withdrawn. They're not able to go and participate in any mainstream activity

They don't feel they don't have the confidence levels, and then that affects their ability to get a job. It affects the ability to have a social life, have a relationship. The the knock-on effect is, is massive, it's absolutely massive as to what

Uh, what, what it does to individuals of, of, of not having those channels of an understanding where people don't understand that. Levels of, of, of racism and and disabism. Can what what what they can do to an individual and I say that came out strongly after the book was published that people kept saying 00 gosh, and finally somebody has said a lot of people have gone into I my my issue was my book was also aimed at mainly men because we don't talk, uh, we, you know, and, and since my books come out, a lot of them, the males that I network with or know or socialise with

They started talking more than they used to, and they they've realised that. Yeah, it's OK to say what's on my mind. In a, in a roundabout way, they're not, you know, they don't actually start um offloading straight away, but they've realised that how I've been doing things

I, I, you know, if I'm sitting in a pub having a beer, I'll say guess what pissed me off, uh, and, and before we realised that we're having group therapy. And, and that's uh something that everyone that I've started hanging around with is talking about. But and, and what's coming out

Uh, particularly in the last 6 or 7 years, I've noticed. Uh Post Brexit. Racism, racism's uh peaked again uh during the Brexit lead up to Brexit and and the immediate aftermath of of Brexit vote

And and so race became a very strong agenda and it's and it's been politicised now by, by the parties as well, you know, they're they're, they're using Brexit and immigration as their answer to all the problems of of the UK um but the. It's, it's now become, I think we're going to go for, I think things will get better again, I've seen it happen too many times. The world will become a more harmonious place again once we've got rid of the right wing

The right wings back to get voted out in this country, certainly you can see that, but it's. It means that the population is going through an experience again, which leads to a number of people from those communities feeling disheartened and and money needs to be pumped out those communities to make them feel an equal member of society again. That's what I think um where where funds that need to need to be channelled in the next decade

What's your hopes for a more inclusive society, more inclusive co-production? Um, my hopes is to get into, into schools. Uh, um, imagine if we taught the social model at school, uh, you know, we. What I, one of the things my, my parents told me when I was a child was that the, the authority wanted to put me into a special school, even though I didn't have any learning difficulties or anything like that, they just, that was where I think they, they thought I needed to be

Um, And When my book came out. I had lots of contact from school friends. Uh, who said, oh, I'm a, remember we were in class together or we were I was in your year or I was in the year below or above you

And they one of the, the, the constant thing that they say is we didn't realise you were disabled. And I thought, how could you not realise I walked a different way. I, I, I, I couldn't do PE

I couldn't do the things that, but it, it was indirect education by mixing kids of all backgrounds and abilities and, and, and beliefs in, in, into a one melting pot. You're getting rid of that fear and that you're creating a less ignorant society. And I think if we can start teaching stuff at school to those younger children

Um, you know, OK, you could be in an all white school in Cornwall where there's no minority communities living there, but it doesn't mean that you can't go in there and, and, uh, and have regular sessions, um, a part as part of social studies about, about the world around them. And there's not enough of that. So my hope is for uh governments and local authorities to, to pay attention to the, to the younger generation

Uh, and that will, it won't eradicate it, but it will be a step in that direction in terms of getting rid of some of that ignorance. Brilliant. Have you got any questions for me? Have you asked all these questions to yourself? I constantly ask these questions to myself, but I'm, I'm constantly sitting there thinking, how do we have a an inclusive world, how do we

You know, this project's around co-production, racialized communities, people, like, I'm constantly asking these questions. Some days I feel like I have the answer and other days not so, so yeah, I do, um. But, um, let me, let me tell you what next

So we're gonna have a couple of workshops that I'll send you an invitation for. There's a consent form and a reward and recognition, um, feed that I'll send you. But if you haven't got any more questions for me, I haven't got any more for you, but it's been really great talking and getting to know

Anything you wanted to add finally? No, no, no, that's fine, that's all good, that's almost therapeutic. Glad to hear it. And what I'll do is I'll drop you an email later with all the next steps, um, what we're doing

So we're collecting, we were doing 12 stories, then we've gone to 20 stories because there's more people want to came forward. So we hope to have a couple of workshops in Feb, um, beginning of March, and then we have a big conversation change where we use the findings from the stories to help us really think about how we can make co-production more inclusive. Um, so I'll keep you informed

Brilliant. Brilliant. Take care

Alright. Alright, speak to you soon. Take care, bye, bye

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