Report transcript in: Jane's story

Please Report the Errrors?

So the first question I have is Could you tell me a little bit about yourself?

Oh,

yeah. I'm

Oh,

I I'm a disabled

person.

I've been disabled since, but,

um,

I have a condition called spinal muscular, actually. Type two, uh,

I use a ventilator

full

time. Um,

pretty much full time.

Um, and I have, um,

personal assistants who support me on a 24

hour basis. Um, I work full time. Um,

I'm a member of the house boards.

Um, I'm an independent,

which means that I'm not

the

political party. I am there for

my my own experts

to reply

and to amend legislation.

Thank you, Jane.

What's important to you in your life, Jane?

Uh, my work,

my work. It's incredibly important to me. Um,

I've got I'm very

privileged to have a position

where, um, whereby I can

influence the way the government legislates, um,

on all aspects

of social, political and

economic life. Um,

I have been

working in the area of

disability rights

and equality and human rights across the board.

Well,

once I met

University, really? When I

got my first job with a in a

national

charity,

I went on to work for the

local government association

and from there to various local authorities.

I set up the

first

disability

training

and train

people to become traders.

I also chair

the British

Council

people during

campaign

discrimination

legislation.

Um,

and I made a

equality

and human

rights.

So therefore, um,

with all that experience

behind them,

I was appointed to

Super

House of the Lord

because I had

the the,

um,

in the country at that time.

wanted

then to get into government and use one

word

to influence

the political agenda to go,

Um, So my work is

Yeah,

like that.

But

my work is

the most important thing in my life because it's exciting.

I enjoy it. It's

trying

do all those things and

pretty much keeps me their life.

Um,

without it, I think I would.

That's the purpose

of that would have an impact on my health.

So, yeah, my work is important.

My husband is really important.

I support my husband.

Your mother is important,

and I

I enjoy life.

I very,

very much about

friends. So I don't think about my disability very much until

infrastructure of support starts going wrong.

Thank you, Jane, for sharing. Um, that.

And, um, we're so lucky to have somebody, um,

championing the rights of disabled people and

really appreciate your time and clearly you're involved in so many important

pieces of work.

So this, um,

piece of work that we are here doing today is

we're capturing the stories of deaf and disabled people.

So I was wondering if you could share with me.

Um,

what impact did the covid pandemic and lockdowns have

on your life as a deaf or disabled person?

Well, it's an interesting question

because I didn't get a factor. It's

all

kinds of people in

many different ways. I don't know. One.

My experience

was thought,

um, comparable

to so

experience that

had

with three Children and living in a flat

in the middle of London.

um,

well, now I have disabled.

In a way, I remember

the pandemic. Remember

a lot of people,

right? Well,

because

I live in

my own home

and I haven't got

I had I have a husband,

so I had to talk

And also

because I did it

didn't take

much

to survive at

home.

I was able to spill,

employ and recruit my colleagues to come in

each day

to get me out and put into that

now that was not without its challenges.

Because while I didn't want to

catch the virus, if I did,

I'm probably

in the

That's

why I would find it incredibly difficult to get treatment at that time. So

I was incredibly

stressful.

But because I have the wherewithal,

um, to plan to organise really quickly

since you have to have my job,

I'm soon

managed to locate my own.

Really, which everybody was like, very difficult.

But I've done a

lot of

other.

I did a

lot of research, and

just

because

I knew at that time

and that number was in such

a tickle

in terms of getting her hat together,

but I needed to be as self

as I could possibly be. Now

I have the lucky one.

I have the house. I have

the ability

to do that. Um, but,

um,

in my knowledge

around the system,

in terms of

what I

ability, just intellectually to do that

and I was well,

I mean

they were all disabled people

are unwell,

but actually, we're not with

lot

are very resilient,

think.

Taking a

drink.

Hm?

Mhm.

So in many ways,

I I I knew that

if anyone was in a coat

in the disabled world,

even though I probably was

the most

vulnerable insects and my help that anchor the moon,

if anyone was gonna survive it,

they really were.

my experience of the pandemic

was not so much of the

and,

um,

but it actually.

But then all I have to

is the survivor first

two years. Um,

I had a few

one of my

left,

which is

so,

so I was

to two PS

that I do all my

but actually that

was very close.

So it's important in China,

and

thankfully, they

did get sick according to their Children.

So between us,

we wear

it was expensive,

but

a way,

and

it was

an experience

that

can

honestly say,

did not move me mental

more afraid

what it did do

once it inspired me

to do everything that I could

to carry on working.

So within six weeks,

the lords was

running

virtually

until the first time

I was actually acting

to my

and in fact, I was doing it a lot better

because I'm so

confident

for using technology.

my participation,

it worked, actually interest during that time.

So I had

plenty to do. I was

I'll tell you more about that in a minute,

but I was saying a lot of work to protect disabled people throughout the pandemic.

So I felt I was doing good. I was

very,

I've done a lot of job

knowing that I could help other people in my situation

and also knowing that I had

the contacts to do that.

And I do two or three things like, I know

the huge

impact

of thousands

people in this country.

So if you want to know about that, I'll tell you

what. Yeah, My My next question. What were those things?

Wow.

Uh, when I began to hear rumours

that, um,

GPS were bring up to

people

um,

asking them, uh

or asking or informing them

that they were going to do that

on their medical records

because they wouldn't want to go into hospital.

Should they get

the virus? Because they would, they would they wouldn't get equal treatment.

But

my other

girls in my hand, so I was able to

get in contact with them. I just

look

the very top,

so don't go down the bottom.

I don't

believe

you're a member of the Lord

you get access

to all the people who are

the decision makers.

So I went back to the talks,

and within two weeks

we managed to get a helicopter to issue a

letter. To all

trust to say this was not a government policy

and

offensive. And they had to

call,

um,

the

illness at the time.

Not a

long time.

It didn't stop

doctors doing that,

but But

this would

not

line with the Human Rights Act

for

Equality Act, and it was illegal.

Did that surprise you that doctors took that approach?

I wish I could say

better.

Um,

but

if you look at that in the

circus, in the circumstances

they were

they had

100 patients coming

into A&E

and

and they only had

those

loads of boats

for

Oh, good.

So what can you do? Start thinking Well, who's the most likely

to find you to survive this

and

older people

living

in town or over the age of 70

um, disabled people.

We see

we got

these,

like these

to benefit.

it was

very hard to,

but they were,

But you didn't want to endorse that.

I don't like it.

Uh, but like Switzerland that everybody

needs to

live

in terms

an individual.

And

if somebody might be capable,

So it's working,

living

out,

perfectly able to survive,

but

to,

um, medical situations

that

makes

them

that

Because

I got

that. I mean,

you know, I'm not right into that,

because that is wrong.

Um,

I think

certain

amount

a lot.

I've not said that it was,

You

know,

we know that

were

disproportionately

subject to

that situation

and not getting equal treatment

equal access to help them.

But

and we know why. Because, you know, they cannot advocate for themselves, and

often the

family

don't know what to do.

So those least able to advocate

for more likely to

make the worst cheaper.

I I'm not around that, and I'm working hard,

and I took

myself

and a few other people that I was able

to to,

you know,

drum up,

like looking

lot of, like contacts that I have

the three of us three were able to mobilise,

um, very quickly to to stop that.

Um, but I

think that,

um,

host

because

I worked

the

don't have

and so that was hard

work.

But we we got

our

That's why

I got

You can make your

They have to do job

and,

you know,

and

and again, not every

hospital

all

agree, because every trust is different,

but in

the

moment, it certainly

helps.

do that.

I was on a a

local phone line

to talk to older people in the area, and

it's quite isolated, so

yeah,

I know I'm not volunteering.

And again, I know how to volunteer, So I know what to do.

And it helped.

So I felt that I was using all my skills

that I gained throughout my career

at that moment. So I knew I I felt very useful

put it that way.

Thank you for those really clear examples. And I'm

so grateful that you were able to make those changes for people like us.

I was wondering

if, uh, did the covid pandemic

highlight or bring to light things that

already existed for disabled people in society.

Oh, yes, of course. I

mean,

um,

attitude.

That's true,

you know, and discrimination.

lot of people,

you know, left

disabled and older and disabled people

situations that are

just untenable

act against the Human Rights Act

one second.

OK,

Yes,

yes. I mean,

you only needs to look at what happened to,

but actually,

um,

attitudes and stigma and

social discrimination

is still alive and kicking.

Um,

and at times, in crisis,

it will always show itself.

I mean, look at what happens

in you.

Everybody, you know, that could get out of the

government

or who could have wanted to

trying to get out.

But the

more people were left

without support

in their

homes and

and institutions Well,

we all know when the chips are down,

it's survival of the

and I'm afraid

that

remains even in a class

country

which is economically very sad

and

very sophisticated.

Disabled people will always

have lost.

And

the fact that

we were not able to access people

in our homes in the same way that we

were

in the hospital and

care homes were

not so much they found it easy,

but we were certainly

the delivery of people.

Really?

Well, for God. So

when it comes to social

and fact

and the fact that the norm is more to

sustain

the social care

assessments, um,

you know,

you did

not

could work differently, but the

the same kind of

rights to social care

um, with,

um,

in the, uh, Corona Virus act.

Um,

I forgot what they called it.

I think it was

with policy.

They eased up on the politics.

So the

local

authorities

to make their own minds up more.

Some local authorities were very good and very supportive.

But others literally left disabled people,

you know, sort themselves out.

And we know that that was a huge struggle for people

who couldn't even get food.

Um,

the owners

and delivering this

because the shops weren't

giving,

um,

they weren't

activated to what we would call

reasonable adjustment at the time

to give disabled people priority. So all the things that we actually

have a right to within legislation

seem to go out the window.

What? Everyone.

no, we were

just

that

left side,

and

think that will come up with the

but absolutely. I

want

some

people

have

difficult time, especially both

their own.

Absolutely.

So I'm really struck with this.

So,

look,

I'm just really struck with this idea of

multiple

people having

similar experiences, but actually,

based on our own resource and our own,

um,

knowledge, um, connections. How? It can be very, very different. Different

at the time,

um,

people to say, people experiencing,

um, lockdowns and some of these restrictions.

Um,

do you think people included in those decisions

how it would work for disabled people?

Do you think disabled people had a voice in that decision making?

I'm not quite sure what you're asking them.

So you you talked about, like, the the right to participate in things that, uh,

our our rights

That and you You

Yeah,

you

do like,

Do you think people like me or know

that they have

because they have

a position?

Because

that, um

within that process, I do have rights because

and I have probably more rights because I'm in the right place at the right time

and I have the right connections

due to my job.

I'm certainly

I'm a very privileged individual.

I know that every single day.

I mean, that worked really hard to get there, and I I hope

to show the world that actually,

allowing them to

disabled people who got a bad deal

if someone like me was not there.

But it's just

the truth,

you know, without women,

the politics

Women would still be second,

about

six months sitting at home, looking after the Children,

watching the

message.

you have. It makes sense, complete sense

to have more people

who

live the experience to be within the process. That makes the decisions

about that experience.

And so,

yes, I think

the right to be

the right to have a say

in your

own situation.

It's vital

to a happy

and fulfilled. And I

I put

up to

mean,

basically,

the government makes

they make us

isolated

because they do nothing to

or do very, very little

to his whole

house

with the solutions to

problems.

Um, and everyone's different.

You know, my experiences

password

was very different

to another disabled

person's experience. Who

outside

and then perhaps

did you or perhaps

was not,

was not good

Oh no, did not live in an economic

situation

or someone who

even has some other part

to you

just clients and shine.

But now

a friend of

of the,

you know, I've done

so many times in my life from,

you

know,

the

pandemic. It

was just another

illness to me.

You know,

I'll

I'll tell

you another problem,

and I'll survive it because

I've done it so many times. So I have the confidence

as well.

I was in a uniquely

privileged situation,

and because of that,

I knew it was

my responsibility to use that

to support the help

wherever I could.

But not everybody can do that. In

fact,

there are very few people, but

yeah,

and I think, uh,

that that's coming across in some of the experiences that we've already had.

So I'm wondering,

do you feel

that things would be different

if a pandemic happened again? Like, you know, you've really,

um,

given me some really great examples of where you

made some changes as a disabled person around policy.

Um,

do you think things would be different?

Well, I would hope we

learn

the States

the first time.

You know,

one

we've got to be

two.

We've got to have

say

that people can't do this on their

own.

They

either die

or they will

come out worse

when they were

lot

less. I'm constantly, never able

to function

properly at times.

if you if that's more

and look at each

to the

population,

I mean

I mean this

we looking at,

But we're looking at

was

looking at,

you know,

trends

and didn't even consider

living in care

homes

until it was too

late.

And they

even

put their hands

on.

Now they

are

intelligence, you know,

within universities,

doing all the

But they didn't even talk about

because they don't know

they

have. No, I do

still,

in the 20

century.

So what it is to

live

class

in a society

in attitudes are still

incredibly backwards and

uninformed

and

and still very much within that

this, that

somebody will look out to them

and it will

be that time.

But a lot of disabled people

do not have time

and a lot of disabled people

that do

not

because they struggling

in different ways. It just too much

So this idea that

so disabled people

been careful

by this

mythical

family is

it still strikes and it

sounds a bit old.

And I think we

bit

within that time

to be very individual.

people were just the

parents to think of their own survival

and their own situation,

because

one thing with some friends,

but when they were very friends,

you

come

down

and you keep your family close

and you just

survive it.

And I think

there was no room for us

in that

thinking

there was no room for for them to be. And those

that did occur,

they were wonderful.

You know, the fact that the nurses

work

chances of

the

fact that a lot

volunteers

disabled people

and identify

that very poor

people.

that is important.

But that was

enough.

You know, that's

even 12 million of us out there.

And

wasn't us

to support.

Thank you for sharing that.

So what would be

the solution to

getting it right going forward,

in your view? So if we were gonna

have an antidote to this space of

not getting it right, what would that be?

they're gonna stop

all into one country

vulnerable people.

I made

some

police

during the,

uh, during the pandemic

saying, um,

stop using vulnerable

for the vulnerables.

We're not vulnerable.

It's very vulnerable

situation.

You know, we are not vulnerable people.

We're not born V.

We make us vulnerable.

And

So I think you've got to look more

all

its

spread the

upside during

the

time

support and survival

in the future.

Preparation,

preparation,

preparation.

Just like we withdrew it

when it came to preparing its

more of a

especially,

um,

and

and it's

some people cook,

um,

the

start

working

vaccinations.

Um,

I think they

no,

into supporting Good

with

an individual. So you go back and work afterwards.

Um,

but I wasn't really

to support

people

and

social

care

support

for

that

time,

I didn't think it need

type of balance.

That's, uh,

the terms of supporting

and their communities,

looking

more local

and working

on a local level

to make sure that

and

you know, we've got to do it now with this energy price

going to save

the

government,

just

suffering their

right

because,

you know and after?

I raised the question

about

two months ago

ask

you what?

What

not

support

life saving equipment?

Living at home

during the

house? Do you know what the art is about?

Well,

they've got hot water.

They got

hot water bottles

and that

parks,

Well,

that that

to not run.

And

So,

you know,

they're just so,

so backward

and their policies are

such good

when it comes to the disabled communities.

Hm.

Oh, that that

doesn't surprise me, but should surprise me.

Um,

I was wondering

what does a post. So there's lots of talk about a post pandemic world.

What does that feeling look like to you? Or like, deaf and disabled people?

And it's affecting me partly

because I find it very difficult to recruit Pian.

Um,

it's a combination of

immigration

controls, so I can't recruit,

but also because

had no

I want to work

from home.

So actually, better to

come out at eight in the morning to let me

out.

It's very challenging,

I think people want to work with

them.

They want to be more flexible.

They don't want to work in the same way.

It's difficult for

because we knew

the old workers

that were coming out the

eight in the morning and work all

six

people don't. A

lot of people want what work?

And

the people that

answer the ad said,

Oh, can I do this?

Um,

but like

what?

Did you read the ad?

What?

Uh, there full employment

in terms

if you want a job

matters.

Um, because, you know,

the market is so

going out for work

so you can earn as much in a restaurant that you can.

It's

that to support like,

um,

they're not impressed with

it.

more investment

a whole range

of support of disabled people to their productive right

will be

essential

Without participation

in society.

You're gonna pay out a lot more

looking

after,

so it makes sense.

that's certainly

one thing.

Um,

what else did you

say?

So there's lots to talk about post pandemic world.

What does that feeling look like to you as

a deaf or disabled person

bit?

With

the

economy

went

into a recession,

you're gonna

pay the price.

the consequences of

that

that would be good to

people.

I hope that

I hope the next time.

Um,

yes,

and

the But the people want to want to

home

and go

to care,

but actually

and control the economy

as a result

of the

and

the

real.

Um,

all I could have is,

yeah,

the people's

tell them.

But actually

this is a black

the

that.

And I'm hoping

the things like this

the fact that we got rid of the planets

and the regime, but,

you

know,

and no

beneficial

to the

most of disabled people in terms

that

one, it's it's

five

people

that will change with the new

prime minister and

the new chancellor.

I'm hoping that it will

change the way we

do business

with.

That

makes sense.

I hope we learn

in.

But there's a lot of hope that

I'm not certain

about anything at the moment

because everything's up in

there.

learn

from

this

and refine our

camp

going forward.

It's

a good one.

All

those

roads

and

disabled people

invincible

in that place.

But out of the way,

we can't have fights.

We can't have fight

for that. Not to happen.

Absolutely do so what

can or have we learned from the covid pandemic and lockdowns?

Well, I hate that's,

Well, it's

It's not

at the moment. I don't see much science

of any dragons,

just

policy.

is still

the

process

with

is in

Texas.

Um,

the economy is good,

but the jobs out there

that are available

on the jobs that we can't do

primarily.

what the revenge?

think it surrounds as well.

What would you want?

That it's

great.

And that experience of knowledge,

it's essential

for

the one

that

we will

learn

so that we can learn

in the signature.

What we learn is

nothing about.

But

if you do it in

advance,

what

do I

have?

But you won't like

much,

and

you will learn

from the

things

that you to

80% of your population

in the way that

other countries in

those

against

those

likes.

Hm,

It sucks. They don't work right.

It's

what would you like the

inquiry to hear?

So what are the messages you would like to the inquiry to hear

involves the experience,

the lived experience,

um,

invest

in the people that are

it's invisible to them.

It's because we

can help them

during these times,

you know,

without helping us.

you

that have

us on

your

I'm afraid it's just

use our experience

to do it better.

for everybody.

Yeah.

And is there anything else you wanted to share with me about your experiences?

Oh,

it's like the nine

year

old

living inside

the

shouts

to the rooftops.

Um,

and also,

what do you want that

games

to do

during the

number of them?

I have more of us

than that,

because

disabled people

all the best

in the world

with survivors

and

drink

some secrets

about

how to survive.

Thank you so much. I don't have any more questions for you. Do you have any for me?

Know.

And it's, um

what

trying

to,

So the process that we're using is we collect individual stories,

and we we're aiming for 12 stories, but we've reached 12 and we still have some gaps.

So we will continue to collect stories

in early next year. We want people that shared their stories to come back

to review us some stories to help us pick out

the key meanings and themes we will be developing a report

that will be presented co-produced between

my organisation, people, social media and disputed

UK based on the findings and that will be presented to the covid inquiry early.

uh, sorry. Late February, early March next year.

Um,

the

disputed

UK have a required, um,

core participant status, um, for the inquiry.

And we'll use this to

along with other pieces of work they're doing as an organisation.

So they're doing a survey, and they're capturing other,

um, data and intelligence use this, um,

these stories within the inquiry and and as part of their,

um,

kind of submission,

Um,

there are a lot of lots of organisations

that got funding through to disrupt funding.

So there's lots of people doing similar

kind of pieces of work with different cohorts. So there's,

um, an organisation working with people that, um,

didn't have, uh, recourse to public funds. One organisation is working with, uh,

the workforce like,

um, social care and health kind of workforce.

So we will keep everyone up to date. But

in a nutshell, the report should be being finalised

late February of next year.

We'll invite you obviously to come and, um help us explore key messages and themes,

and we'll keep you everybody up to date with how it goes. And we

know that the people that are gonna help us disseminate

this report will also be yourselves because of your networks.

And,

um so yeah.

Yeah,

Right. So that's good.

I certainly

not.

hope so. I hope so. But thank you so much.

Like, personally, you've been an inspiration of mine for many years.

Well,

I just

do a

job,

and

people

I know are

out there.

They,

they

me and

I couldn't do what I do without them.

rather

than

we are. But we are so lucky to have you with no spaces,

um, sharing our voices. And, um,

never thought that one day I'd be on a call with you.

Um, so that's a highlight of my week.

If you're happy, I can stop the recording there. Um

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Posted By

Author

streetreporter

Post date

19/04/2023