Report transcript in: Jacqui Talks About Co-Production

Please Report the Errrors?

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.

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.

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.

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.

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 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

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,

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.

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.

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?

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,

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,

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,

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.

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 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,

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,

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?

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 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 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,

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 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.

entitlement and power

more than you.

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.

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,

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.

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

So I,

I really,

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.

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.

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,

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.

thank you so much for sharing your story with me.

Um,

I'm gonna stop the recording if that's OK.

Yeah.

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Author

streetreporter

Post date

08/01/2025