Jacqui Talks About Co-Production

So can I get you first of all to introduce yourself? My name is Jackie Darlington. Jackie, tell me a bit about you. Wow, um. I'm a mother to two fantastic boys

The youngest is 31, who has Down syndrome, autism. And very, very limited speech, although it's understanding. Way outweighs the

Um, the vocalizer that you can do. I Real realised I was a carer when within days of giving birth to Joshua. Um, and that was the way in which I was treated at the hospital

Um, which then made me become very Isolated. Um, not realising. That we were the freaks that we were made to be

And, um. And from that, once I realised, you know, life goes on. I became You know, quite adamant in getting what I wanted

I would. Ask if he could get these things or get whatever, and they would say no and I'd, I'd ask to know why. They couldn't just give it away like that

So that's how my role started with Joshua. I then went on to become a teaching assistant in the school, working with special needs young children. Um, And then what else did I do? Oh, and then from then I became um a foster carer

I moved down into the East Midlands. And again, went back into special needs school. And became the seco in nurseries and

Unfortunately, when Josh got to 20. I realised I couldn't work and Be a carer. Um, therefore I gave up my job, and that really upset me

Because with giving up the job means giving up the home I couldn't afford. And You know, I had to pull my socks up again and think, OK, this is all gonna beat me. And Again, Going through the system, learning a new, each authority have their own way of doing things

And you don't know that until you've moved from one local authority to another. In your naivety or my naivety, you think. Everybody is doing the same thing

Whatever you get in one authority, you'll get in another, and that's not the case at all. Um, so you become quite, you become quite a. Um, I wouldn't say a fight, fighter is the wrong word because that sounds really physical and whatever

It's not fighter, but become quite adamant and. And ensuring you get the best that you can get for your young person. So, where I am now

Um, because of the roles I've played, I got bored. I did some volunteer work. And through volunteering, I went back into work

And that is where I am now. Wow, so much in, in, in a, in a lifetime. And what, uh, tell me how you got involved in co-production

Well, That started when I moved from. Lancashire down to the East Midlands here. And it started mainly with um the parent carer Forum, which caters for children and young people and their families 0 to 25

And I was asked to come along and. Be a part of this group and whatever else. And It was through doing things like that that I became part in co-production because then I was having meetings with people in the local authority, um, meetings with um education psychologists and

Other people like that, and that's how I came involved in co-production, especially with the launch of the education, health and care plan. I was heavily involved in. The beginning of that, and even when it launched, I was still involved, but I then stepped down because I felt I'd done as much as I could do in that age group that my son was in

Um, you, you know this project exploring the experiences of people from racialized backgrounds and co-production. So do you think your experience has been different, um, and if so, like, what has your experience been like? I live in a predominantly. White area

To be blunt about it. And um, And I found that Someone has said to me once, I'm glad you're here. And I said, oh yeah, why's that? You tick a box, was the answer

And I went, pardon me? You tick a box and I said, what box is that? Still being quite naive. And she said, oh well, you know what I mean, you know what I mean. We've got you that that's with, with, with Joshua, and we've got so and so with

So and so, and you all tick a box. And it was, as I was. Asking her to explain what she meant by that, that other people jumped in and said to her

Someone that is highly qualified and educated, that statements like that cannot be made and should not be made. Um, And it was from then onwards I realised, hold on a minute, am I, are they asking me to join these things because of me? Or is it the colour of my skin? And You know, I had to. Make a decision as to whether I got involved or not

Based on how Convicted I was to do that role. If I felt that, hold on a minute, this isn't my sort of thing, then I wouldn't do it. So whether they were ticking a box or not, I wouldn't do it

Um, but that was just the beginning of Co-production for me and the beginning of me realising, I was being used. My sense of God. In the spaces that you're in now

Has that changed? I think it has changed because people have come to realise who I am and what I stand for. I think there are times they still want to. Push the barriers a little bit

And I will say, you know, why do you want me to go? Why do you want me to attend? What's so special about me? Attending, and other times, because I want to attend, you know, I will just go along with it because I want, I think, OK, you know, let's use this to my advantage. Rather than their advantage if you like, you know, yes, they might be doing what they, you know, the tick box exercise, we've got one of this colour tick here, um. But at the same time I'm thinking, no, I've got something to offer here

I've got, I've got a voice that's. They They need to listen to, and they do listen to. Do you think that you have the same opportunities as your white peers? No

No. I feel that everything I've had to As for, I've had to justify it. I've had to ask for um

Oh, I can't remember, but uh you know, extra time so that Josh could go somewhere for for another day. And they were like, well why do you need that? And I've had to say, because. I'm entitled to it

I've not had to. Um, I've, I've never felt it was given it was given to me. I felt I've had to ask for it all the time

Do you feel like. The Do you feel that race plays a part in. That at all

I have actually told them it does. I have told them. Especially one particular person, I've actually said, what is it with you that you I've chosen to speak about my eldest son the way you have done

And now me, and it was all to do with The way in which I had spent or not spent the direct payment money. And I, I just sort of, and I literally said, have you got a problem with me? Cos I feel this is discrimination. I didn't use the word race, I just said discrimination

And she backed off, she wouldn't speak to me for months. In fact, years, and she didn't speak to me, we corresponded via email. What why didn't you use the word race? Why Because that's my my very last card, if you want to call it a card

I want to, I wanted to know. Mm. I weren't, I weren't sure it, it, I knew it was race, but I didn't think they knew it was race

But if I said discrimination. It will make them stop and think. I didn't want to come across as the angry black woman

The moment you say, well, that's race discrimination, you come across as the angry black man, the angry black woman, or whatever. And I didn't want that. And have you had to play that role often in your life to preempt being storied up as the angry black woman? I've learned how to play the game, if you want

I preempt a lot of things. I. Um, you know, I see things coming a lot more

You know, Josh is now 31. So I see a lot more things coming. I'm aware of things coming

I've pulled him out of services. I've told him that what the way they're treating him is disgusting. And I wouldn't let my, you know, I wouldn't have the, a dog go to that service anymore

But at the same time, I said, this is what I want for my son. And I've researched and got the service I wanted and I literally compared the two. So I've preempted them saying, well, there's nothing else

Which then you're left thinking. OK, if there's nothing else, you might as well continue going cos I, you know, how am I gonna survive and how am I gonna continue doing what I'm doing. So I've preempted it

Um, And found I wouldn't say they're perfect, but they are fantastic services that we've got for them. And if I do, any problems at all. Um, With any of the PAs or the The day centre such that he goes to, I can just send them a message and they all pull together between them

You know, um, a death in the family, for instance, and between them they organised. Who's gonna have Josh, when they're gonna have him so I can attend the funeral. Now you like this

What impact has this had on your well-being and your, you know, emotions and your mental health? Um It's, it took, it took a lot out of me. It really did, especially when I had to turn around and say, is this discrimination? Because I had to face the fact that it was. Where leading up to things like that, I was saying no he can't

They wouldn't do that in this day and age, they wouldn't do that. But I had to um. Face the fact that it was actually happening

And By facing that, then it just made me feel really vulnerable. It made me realise, you know. I don't fill in forms anymore when they ask for surveys and they want to know your opinion

From the local authority. I won't fill them in anymore because the moment you put Black British, they know it's me. The moment you say I prefer not to

Then they have an idea, it might be me. And the ones that they send for Josh to fill in, the fact that he can't fill them in, I've got to fill them in with him. They have a number on it, and yet it's meant to be

Um, You know, nobody's meant to know who's filled in what for, but it's got a good number on it, 1974 or 1794, whatever it is. In that case, then they know exactly who's filling in the forms. So unless I can fill in the forms and do it anonymously

And feel What I can say, or what I can say I can say openly, or I do actually tick, deliberately tick, black Britishish because I need them to know it has come from me. So it all depends on what they're asking. Yeah

And now I know you. Professionally from doing lots of national co-production. Tell me about the spaces that you're doing co-production in, and how do they feel, what support, like does does race and ethnicity and the experiences play out in those spaces? From the spaces that um I'm in now

Race doesn't play a card in there at all. I don't feel it plays a card. In fact, if it does, it's because they need to know how

It affects our race. It's not the fact that we want you because of, we want, it's more like um. If we were to do this, how do you think other people of your culture would? Would take it, which is slightly a different way of looking at things, not slightly dramatic way of looking at

Different, um, looking at things differently. So, um, in the co-production world, I mean, I'm involved with Impact, I'm still involved with Health Watch. Um, I do And volunteer with

Um, carers UK. Um, And literally anybody, anything I think at the time, what's going on, if I can fit it in, I fit it in. I believe that

Carers cannot make. The right decisions without the right information put in front of them. And the same goes for the young adults

Um, I was so disgusted with adults with learning disabilities sitting. And listening to someone read a book as if they're in primary school. That I formed

The group And that group is multicultural, multi everything multi in the well. any disability can attend, it is mainly for those with disability. However, we've got quite a few young people that are now asking, can they come and volunteer because they want to

Work with people with disabilities. So, you know, we are now looking at how can we. Make sure they're the right people that's coming to work with this young group

And when I started the group in 2015, I was told it wouldn't last. How are you gonna police it because, you know, we were saying, well, you know, if they want to go to the pub, we'll go to the pub. Oh no, you can't do that, you can't take them to the pub

How do you know what they're drinking and, you know. These are 18 year olds. An older And I say, you know, there's a matter of choice in this

You know, um, and we're only there for 2 hours. We will see how much they're drinking, and we will monitor to some degree. What they're drinking, but if they don't know the taste of alcohol, when they do go out and someone gives them alcohol, They won't know whether Whether it's something they can drink or not

So they need to be in an, in an environment where. All sorts is going on, they can smell the drink, they can, they, they, you know, they're aware of what's going on and why, why should they be different to their peer group? You said that thing, you, you mentioned kind of centering a lot of your work around disability. Do you think that

Or has your what's your experiences of people or disabled people that come from racialized communities, do they have? You know, more challenging experiences or, you know, does race play into that? They have more challenging, because they've, yes, they do have more challenging, um, challenges to get over, because they've got the cultural side as well, and the culture. Can limit what they are allowed to do. Um, You know, we all know you've got, you know, we've got the Jews, we've got the Asians, we've got

Um, all sorts of other races, but. They, they do their prayers at a certain time, they've got to face the. East west at a certain time, you know, they've got to do what they've got to do, so at the same time when we are planning and planning a trip or planning anything, If We've got anybody in with any

Cultural needs like that, we have to take that into consideration. I'm really interested in like this national stuff that you do. So in terms of you being in these spaces, are you the only black person typically or

You know, they're very diverse or. Um, In the national things I'm doing, um, Depend, I, I am not the only black person, but I'm the only black person from this area. Um, so not even though nationally

I will be the only one that probably attends from the Midlands. Um, You know, it's, it's really hard, really, because a lot of them. Depending on who you're caring for as well, you cannot always find someone to care, to take over your caring responsibility while you attend

Uh, a function or a meeting or whatever. I am quite fortunate that I've developed a good network. And even if when I'm late leaving work

I can ring them up and say, can you, can you feed him for me, can you keep him for half an hour for me, or can someone pop in with a bag of chips, you know what I mean, and. And do that, do something like that, but not everybody is as fortunate as that. Um, And not everybody trusts everybody the same way, you know, you have to be quite open

Mhm. I think when you have a child, child, young person with or an adult or anybody with a disability, you've gotta be open to accept. Support And help

What do you think needs to change to make co-production more inclusive? I think we need to become more aware of the other. Um, cultures. We need to be probably reaching out to them a bit more

We need to be, if it, if needs to be, needs to be, if needs be, we could. Going to their. Community

And speak to them in their community. We're always asking people to come and join us. But what about us joining them? And what about facilitators, often co-production facilitated

Is it, you know, is that diverse? Do we need, does it work in terms of cultural competency and. I have not, in all the groups I have been involved with. I have not seen

Many Or more than a handful of. Of the cultural. Um, People As facilitators

I think it's really hard. I don't think, I don't know whether this is cause. It's an area because these young people or these people with disabilities

Uh, an area of. Um, coming to an area where we don't understand, therefore, we don't want to be in a situation where someone to ask us questions and we don't know how to answer them. Therefore, we're not gonna put ourselves forward

But I think it's a nationwide thing as well. You find nationwide that you don't find black people, Asian people, well, you do now, I mean, look at them, they're all, they're now becoming prime ministers and, but even so. Proportion wise

It's not, it's still not fifty-fifty. You know, you probably get 10% um of the minority ethnic minority. In a group where the others are white British

And and when you're in a space where. You, you are part of that 10%. How do you think that your opinions and your views and

Cos a lot of people have talked about over and microaggressions and the things that happen, how do you think kind of like you're valued in those spaces as a, as a black woman? I think I'm, it depends on why they asked me to be there in the first place. If I, if I'm there to give an opinion. And if the, if I'm there to What the groups I'm involved with, I'm, I am there because I know they want me there, they value my opinion

Um, There's others that I've stepped into and stepped out just as quick. Um, because you go in, because it, you know, they say the right things, they do all the right things, and then you, you get there and you're thinking, Oh, this feels really uncomfortable. And the moment you challenge anything, you, you know you've stepped on someone's toes and that they're not happy about it

So you step away rather than, and maybe I should probably stay in. Cause some more waves, but there's only so many battles you can fight. And I think You have bear in mind

I am a carer as well. I have to choose my battles because I can't fight them all. Absolutely

So if you know those spaces that you've stepped away from, do you think if somebody that was white challenged, they would get the same response as you've had when you've challenged? No They would, they would be um. They would be accepted, they would, they would at least consider what they've said, and they would wait up to the pros and cons of it. Where mine wasn't anything like that

I said it to know it. OK. It wasn't even noted in the minutes

I had to then say, I actually said this, that's not what I said. This is what I've said. You know, and And it's like a footnote then, rather than in the actual minutes

And you're coming to these spaces with. 30 odd years' worth of care and experience, all of your professional experience, so you've got a lot of learned and lived experience. I'm just so shocked with this idea that people

Just don't listen to you because you're, you are a black woman and your opinions. Yeah. Well, you know, I, I was brought up in the 60s and

I remember my mum and dad saying to me, no matter how good you are. You have to be better than the the man, the child or the person next door. If you both of you go for a job, you'll never get it

And I used to turn around and said, No, Mom, that, no, because so and so's my friend. No, we'll both go for the job, and the best person will get the job. And it It dawned on me quite quickly

What my parents were saying. And I've deliberately not used that phrase with my eldest. Um, And he too has found it hard

And he too has, has earned, has earned his title in, if you like, cause he's a chef. So he's, you know, he's known now because of the way the things he make, he cooks and makes. So he's already known in the, in that field

But, um, You have to sort of go in and make your own mark, you know, you're not, you're not. You're not take, if you, if we gave in two exam papers. And They looked at these exam papers or looked at these references, whatever they were, and thought, hm, don't know which one of these to choose

The moment they realise. Someone's black, you either get chosen or you don't get chosen. You don't get chosen because you're black or you get chosen because you're black and you make up the numbers and you meet the quota or whatever it is

And that that has not changed. That has not changed from When I was told that in the 60s. It's more discrete, it's not in your face as much

And it's not subtle but it's still there. What happens when you challenge, so like if this subtle stuff comes out and you challenge, like what's your experience of people responding to you challenging. Um, the sur around and said that, that's not what they meant

That's not what they meant, you know, um. A brilliant one, which I mean it's got nothing to do with work, but. We went into McDonald's a couple of years ago

Ashley's got these sunglasses on and shorts. Ashley's my oldest, by the way, sunglasses and shorts on and, and I went in with Joshua and Joshua followed him and I went in behind Josh. And Ashley went in and was Ordering off the screen, and this bloke just stared at us

Literally took the clothes off us. To the point that I have to say to him. Is there a, no, I didn't say it's the problem

I said, is there something wrong? And he went, uh, uh, no, no, no, no. So Ashley then comes over, pulls off his dark glasses and says, what's the problem? This, this bloke and his partner, wife left that restaurant so quick. You know, instead of him saying

I just wondered what's, you know, what your, your son's disability is, if that was why he was staring at me. And him But he wasn't just staring at Josh, he was watching us as a family, he was just staring at us as a family. Just feels like So you're dealing with this stuff in your everyday life, you're dealing with this stuff in your work, in your co-production, you're dealing with this stuff trying to access services

It must be very hard to keep on going. It is And at times you just wanna cry. Um, especially when you know what you've heard

And they are denying it. And you've got no proof. Um, Especially when you literally turn around and you say to them

What you're doing is discrimination against. Me against Josh against. And then there's no, they just disappear off the face of the earth as if they don't exist anymore, you know, you, you, you literally tell them what they're doing and they just disappear

Um, it's hard, and I think you have to develop a thick skin. And I think the younger generation. I gonna find it even harder

My parents came over in the Windrush generation and it was really hard for them. And Um, to the point where I wasn't allowed to go out and play, because my mum and dad was just petrified that someone was gonna run off with me. Um, You know, when everybody else is playing on the street, I wasn't allowed to do that

But. I think my son's generation. I found it hard my nephews

I found it really hard because the, Discrimination is done in such a subtle way, you cannot take anybody to court with it, it wouldn't stand up in court, but it's little things like um. You know, um, Oh, I need my friend to come and stand here. So you, so then you end up at the back of the queue

Um, you know, and it's um. Well, I was gonna have that and then it's pulled out your hand. And you're like thinking

Well, I'd had that, you know, and he, and, and then it sounds really petty. I was holding onto that, you know. It's almost as if you're going into one of those um Early morning sales where people are pushing and shoving to get the best of the things and they're fighting over the, The clothes, it's a bit like that sort of attitude sometimes, but

It's hard. And do you think people have a sense. Of entitlement and power more than you

I I don't think they have. They think they have. But they haven't

They haven't, um. You know, I have left Workplaces For comments, sly comments, I've walked out. And I, in fact I've not, not walked out, I've walked in the day after and said, here's my notice

And I've got 2 weeks holiday I'm taking it. Um, And then they go, Oh, you know. And that's because I feel like, how, how can you fight? Something that nobody else is

willing to back you up on if you're the only person in That's of colour. And you're the only person that's hearing the remarks. Because nobody else seems to hear them

You believe that or you think people hear them and ignore them, or what, what do you think? Oh, they're here though. But I don't think they, a lot of the times that they, they. They use the excuse of, well, you know what I mean

I didn't mean it like that, you know what I mean. Um And you like thinking, there's only so many times you can say that. You know, the first time I, you do it and I pull you up for it, should warn you that

Don't do it again, but it doesn't make any difference. So when, you know, if you turn around and say, did you hear that, they'll go, hear what? You know, so you know then you've got nobody to back you up. In thinking about like the co-production spaces, if people are behaving in this way, do you feel like

That people would back you up. Do you think people would step in? In the co-production groups I'm involved in. I think they will to

I don't feel I don't feel um any doubt at all where that is concerned. I wouldn't continue being part of them. Um, the groups are very aware of my

Feelings, um. Whether culturally or to do with this a disability or. Anything like that, they're all very aware

And, you know, and I'll say, Where's the simple. Where's the easy read version of this? You know, nothing to do with culture, but. You know, where's the easy read, just, you know, you're supposed to be catering for those with learning disability

How can a learning disability person understand this? And as one person said to me, um, They need me to proofread everything before it goes out. And I said, well, what do you mean by that? and I said, we use lots of words that aren't always the right words to use, and they're actually admitted. But they admitting that they're willing to

Le You know, um, Cos they'll send something to me and I'll say, I have no idea what that word means. And in fact I've pulled them up in a meeting when they're standing there doing this massive presentation. And I go, excuse me, I don't understand

Yes. And yes, it probably makes me out to be thick or, you know. Uneducated

But I'm sure if I don't understand it, there's many other people next to me that don't understand it either. And what is your hope for the future of a more inclusive? Co-production world. My hope, um, That it would become norm, you wouldn't need a, you wouldn't need a co-production team or world

It should be embedded in. Everything that we do. It shouldn't be as if

Um, It's a separate organisation or a separate team. It should all be warm. I'm not saying that you won't need someone to then take it away and make it into easy read, because that's a specialist job in itself

But From co-production point of view, the language should be simple, the language should not be complicated, it should be. Everyday language used. For everyday people

And thinking about kind of the conversation we've had today that clearly not everyone's having the same experience in co-production. What do you think needs to happen for people that are from racialized communities? I think from I think it's really hard because they already feel. Aff And if you're already, if you're feeling like you're a victim, it's hard for you to

Come forward and be a part of anything. And it's really hard as well if language is. A barrier Um So I, I, I really, I, I have no answers

I really don't have any answers, really, cos I think once you feel you're a victim, unless you're willing to break the mould. Turn around and say, I'm not happy with this, I'm, you know. Um, and find somewhere where you can fit in if you like, or, you know, I went to the extreme of breaking away from everything round here

And ended up with Carers UK. That's national and based in London. Because I was so disillusioned with everything that

I was dealing with at the time round here. Oh, that's so profound isn't it like disengage everything locally, go to London. Yeah

Yeah. It is because I couldn't get, I couldn't get any answers. I didn't know, nobody was telling me what I was entitled to

Nobody was telling me how the, the best way to do. Anything, and I mean the basics I suppose. Yeah, what really did it was

Joshua got to 20. I went to get this prescription from the chemist. They then told me I had to pay for them

For him. And I'm saying to them, why do I have to pay, he's not working. Is special needs, and they say you still have to pay because you, you don't fit any of the categories on the, the back of the form

I didn't know any different, and in the end, one of them came across and said, well what you do is pay, but what you can then do is go and get her. An 8C2 form, I think it was called, and fill one of those in, and if you're entitled to it, you'll get your money back. And I went, where do I get one of those forms? Your doctor, so I had to go right back to the doctor's, get, you know what I mean, lots of toing and fro

Got the form, filled it in. T Two years later, still ticking it, nobody told me it had to be renewed and you've got to apply for a renewal. Because they don't automatically renew it and they don't send you any letters or anything

They can get a bill for over 1000 pounds. Nearly died. And by which time I'm crying I'm like, how do I owe this? Why? You know, and talking to the lady on the phone, she was fantastic

And she's saying, well, Why are you ticking that part of the form? I said, because I was told to. And then she said, OK. Well, so why were you told to in the first place, and she went right back and I said, because da da da da da da

And she said, no. He should have been ticking Either income support or ESA. On the form and I said well

ESA was not on the form, while they were using old forms, but they should have known that. And if it wasn't for her. I would have paid this 1000 and odd pounds, 10 pounds a week, whatever, but you know, but this woman's really good and she got me through it, she spoke to me and, and that was a turning point for me, cos I'd turned around and said, how many other people are gonna fall through the loophole like this? Yeah

I haven't got any more questions for you, do you have any for me? No. I think I've talked to you to death. I know, I was just thinking so, so, so much in what you've said and I, I suppose I'm left with this sense of

Having to choose the spaces that are safe for us. Having that. There's an emotional side to it all of this

Um, but we're still determined to carry on. And just knowing that that the subtle things that people hear and just ignore because. They can and and that they have, yeah

So thank you so much for sharing your story with me. Um, I'm gonna stop the recording if that's OK. Yeah

.