Jane's story

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

yeah. I'm Jane Campbell, I'm a disabled person. I've been disabled since, birth,

I have a condition called Spinal muscular atrophy. Type 2,

I use a ventilator full time pretty much full time.

I have a personal assistants who support me on a 24 hour basis. I work full time.

I'm a member of The House of Lords  I'm an independent, which means that I'm not

associated with any political party. I am there for my own expertese

to reply and to amend legislation.

Thank you, Jane.

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

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

I've got I'm very privileged to have a position

where  I can influence the way the government legislates,

on all aspects of social, political and economic life

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 equality training  to register

and train disabled people to become traders. I also chair

the British Council people during

campaign discrimination legislation.

and I made a equality and human rights.

So therefore with all that experience behind me, I was appointed to

Super to The House of the Lords

because I had probably the most expertise

in the country at that time.

I just wanted it then to get into government and use one

word to influence the political agenda to go,

So my work is probably like that.

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

I enjoy it. It's frustrating challenging  to do all those things and

pretty much keeps me alive. without it, I think I would.

Lack 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.

My mother is important,

and I I enjoy life. I very, very much about

so I don't think about my disability very much until

my infrastructure of support starts going wrong.

Thank you, Jane, for sharing that.

And, we're so lucky to have somebody,

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, 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, comparable to so

experience that single mother had with three children and living in a flat

in the middle of London.

Although I'm a disabled person in a way, I weathered

the pandemic better a lot of people,

Why? Well, because I live in my own home and I have a garden

I have a husband, so I had company to And also

because I needed personal assistance much to survive at home.

I was able to spill, employ and recruit my PAs to come in

each day

to get me up and put me to bed

now that was not without its challenges.

Because while I didn't want to

catch the virus, if I did, I would probably be dead

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

I was incredibly careful .

But because I have the wherewithal,

to plan to organise really quickly

since you have to have my job,

I'm soon managed to locate my own PPE

which everybody was like, very difficult.

But I've done a lot of other.

I did a lot of research, and just bought it because

I knew at that time and that the government was in such

a pickle in terms of getting her hat together,

but I needed to be as self sufficient

as I could possibly be. Now

I'm the lucky one.

I have the house.  I have the ability

to do that, 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 a lot of us are very resilient,

Hang on Isaac I'm taking a drink.

So in many ways, I knew that

if anyone was in a coat in the disabled world,

even though I probably was

the most

vulnerable in terms and my help that anchor the moon,

if anyone was gonna survive it,

then we were

so

my experience of the pandemic was not so much of the

affraid, um,

but it actually. But all I had to do

is to survive those two years.

I had a few blips one of my PAs left, which is so, so I was down  to two PAs

that I do all my cover

but actually that was very close.

So we supported each other, and

thankfully, they

did get sick according to their Children.

So between us, we managed

it wasn't easy but in a way, and it was an experience

that I can honestly say, did not make me mentally scarred

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 equally to my peers and in fact, I was doing it a lot better

because I'm so confident for using technology.

So my participation, it worked, actually increased 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 was getting alot of job satisfaction

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 that I know the huge impact lives of thousands of diabled 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.

When I began to hear rumours that GPs were ringing up  disabled people and asking them, or asking or informing them

that they were going to put a do not resuscitate 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 at the very top, so don't go down the bottom. I don't believe

you're a member of the Lords or 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 Matt Hancock to issue a

a letter. To all NHS trusts to say this was not a government policy and

basically  they had to treat people, in terms of their illness at the time.

Not a long time disability. It didn't stop doctors doing that, but But

this would not in 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 no but if you look at that in the in the circumstances

they were they had 100 patients coming into A&E every day

and they only had ventilators  and beds for half of them

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

in my view to survive this and older people

living in care homes or over the age of 70 and disabled people.

would seem to be the least likely to benefit.

So it was very hard to, but they were,

But you didn't want to endorse that. I don't like it.

But l insisted  that everybody

needs to up in terms of 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 it helps a lot. I've not said that it was,

You know, we know that

peoples with learning difficulties 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 were more likely to get  the worse treatment

so I'm not around that, and I'm working hard, and I took myself

and a few other people that I was able  to, you know, drum up,

like looking like a lot of, like contacts that I have

between us the three  were able to mobilise,

very quickly to to stop that.

Um, but I think that, In terms of being allowed to take a PA in with you

into hospital because I go into hospital I won't survive

if I don't have PA with me to support me in the way that they know needs to be done

and so that was hard work. But we we got our

That's why I got my You can make your

PA.

They had to be jabbed an wear PPE, you know, and and again, not every hospital

all

agree, because every trust is different,

but in the moment, it certainly helps. I do that. I was on  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

to 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.

A lot of people, you know, left disabled and older and disabled people

in situations that are just untenable act against the Human Rights Act

one second.

So

OK,

OK,

Yes,

yes. I mean, you only needs to look at what happened to people with learning difficulities to know

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 Ukraine

Everybody, you know, that could get out of the government

or who could have wanted to trying to get out.

But the several people were left without support in care homes and

and institutions Well, we all know when the chips are down, it's survival of the fittest

and I'm afraid that remains even in a first world country

which is economically very sad and very sophisticated.

Disabled people will always feel lost.

And the fact that we were not able to access PPE in our homes in the same way that peopel

in the hospital and care homes were not so much they found it easy,

but we were certainly lost in the delivery of PPE.

We were forgotten when it comes to social care a the fact that the law was brought in

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

in the, uh, Corona Virus act.

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.

Couldn't get on a delivery  list because the shops weren't giving,

um,

they weren't

activated to what we would call a 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.

So no, we were disproportionately left

We do that left aside, and

I think that will come up in the enquiry

but absolutely. I want some people have a gastly

difficult time, especially those who live on there 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, disabled 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 me.

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 right 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 hope

to show the world that actually, like

allowing me to to participate fully

disabled people who got a bad deal

if someone like me was not there.

But it's just the truth,

you know, without women in politics

Women would still be second class citizens

sitting at home, looking after the Children, washing the dishes

so 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 to a happy and fulfilled. And a productive life

mean, basically, the government makes us they make us isolated

because they do nothing to or do very, very little to involve us

with the solutions to our own problems.

Um, and everyone's different.

You know, my experiences was very different

to another disabled person's experience who  perhaps

had a mental health issue or perhaps was not, was not good

Oh no, did not live in an economic sound situation

or someone who even has some other part to you

just clients and shine.

But very affraid of of the pandemic,

um

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. So 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,

given me some really great examples of where you

made some changes as a disabled person around policy.

do you think things would be different?

Well, I would hope we

learn by our mistakes the first time around.

You know, one we've got to be ready two.

We've got to understand that disabled people can't do this on their own.

They either die or they will come out worse

when they were a lot less. I'm constantly, never able

to function properly at times. So if you invest more in preparation

and look at each cohort within your population properly,

I mean I mean this we looking at, um

But we're looking at I was looking at,

you know, trends and didn't even consider

peoples living in care homes until it was too late.

And they even put their hands up.

Now they are intelligence, you know, within universities,

doing all the scoping

But they didn't even talk about us

because they don't know us

they have. No, idea still,

in the 20th century.

So what it is to live as a disabled person in a society

with attitudes are that are still incredibly backwards and

uninformed and and still very much within that

to this, that somebody will look out for them

and it will be there families. 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 stayed a home being  cared for  by this mythical

family is

it still  srikes  me a bit  a bit old.

And I think we a bit within that time

to be very individualistic .

Like people were just the parents to think of their own survival

and their own situation, because

one thing with some friends,

but when you're very affraid

you'll bunker 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 went into work everday

chances keep people alive the fact that a lot volunteers

disabled people and identify that very poor people.

So that is important.

But that was enough.

You know, that's I

even 12 million of us out there. And it 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?

I they're gonna stop lumping us

all into one country or

vulnerable people. I made some

peace  during the,

uh, during the pandemic saying, um,

stop using vulnerable for the vulnerable.

We're not vulnerable. It's very vulnerable situation.

You know, we are not vulnerable people.

We're not born vunerable .

We make us vulnerable.

And so

So I think you've got to look more

at the characteristics when planning for the pademic

the time support and survival in the future.

Preparation, preparation, preparation.

Just like we withdrew it when it came to preparing for

the pandemic of a especially,

um, sourcing the PPE,

um, the start working on vaccinations.

Um, I think they poured loads of money into supporting

to go with

an individual. So you go back and work afterwards.

Um, but I wasn't any money set aside  to support disabled people

and social care support worker within that time,

so I didn't think it need type of balance. better

That's, uh, the terms of supporting and their communities,

looking more locally  and working on a local level

to make sure that people are identified who may need help

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

going to disabled people are going to be

disproportionately  suffering amount

Why you know we're an afterthought  ?

I raised the question in the Lords two months ago

I asked him what planning what strategy

had they to  support disabled people with  life saving equipment?

Living at home during the blackouts

Do you know what the answer was?

Well, they've got hot water bottles.

together with water bottles and battery packs

Well, battery packs do not run sealing tubes

and

I So, you know, they're just so, so backward

in their policy and strategy  making

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 personally

because I find it very difficult to recruit PAs

um,

it's a combination of the immigration controls, so I can't recruit,

from Europe

but also because most don't want to work nights and want to work from home.

So actually, many people

come out at eight in the morning to let me out.

It's very challenging, So

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 us because we need the old workers

that were coming out reliably at  eight in the morning and work until six

people don't. A lot of people don't want what work?

And the people that answer the ad said,

Oh, can I do this from home?

I think  like what? Did you read the advert properly ?

uh, there full employment in terms of

if you want a job matters.

Um, because, you know, the market is so

crying out for worker

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

So the actual support,

um,

they're not inversting in.

So more investment in a whole range

of support of disabled people to their productive life

will be essential

Without participation in society.

You're gonna pay out a lot more looking after,

so it makes sense. So

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

a bit depressing?

With the economy went into a recession,

you're gonna pay the price.

So the consequences of that

don't look  good for disabled people.

I hope that I hope it can last

um,

yes, so and

the But the people want to want to go home

and go to care, but actually

and control the economy as a result

of the pandemic the real. Um,

all I could hope is,

yeah,

the people's moral compass tells 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

of 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 politics.

I hope we learn lessons.

But there's a lot of hope there isn't there

I'm not certain about anything at the moment

because everything's up in the air

we either learn from this and refine our moral compass going forward.

together

keeping disabled people invisiible  in that place.

and out of the way, we can't have that.

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, hope what this inquery is going to show

at the moment. I don't see much science

of any worthy

in terms of disability policy

so is still in deep crisis the NHS.

Um, the economy is good, but the jobs out there

that are available on the jobs that we can't do primarily.

So what have we learnt?

I think it's to early to tell

what would you want?

Disabled people learned a great deal

and that experience of knowledge, it's essential

for the one that we will learn

so that we can learn in the future.

What we learn is nothing about.

But if you do it in again,

on your head be it

but you won't like yourselves  much, and

you will learn from this inquiry things that you treated

basic things that we cry out against. Don't throw stones at glass houses if your doing yourself

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,

in future dynamic planning

um, invest more in the people that are

invisible to them. It's because we can help them

during these times, you know,

without helping us.

it exposes your weaknesse

So if you want to keep us strong then help us

I'm afraid it's just use our experience to do it better

next time for everybody.

Yeah.

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

Oh, it's like when I carry on

living inside the shouting to the rooftops.

Um, and also, where do you want going

to do during the pandemic  government

I have more of us in there, because

disabled people are the best problem solvers in the world

we're survivors and

we can show you 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?

 

when does this report get written. When is the inquiry going to

Take the evidence and when will it reveal its findings?

Uh

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, peoples voice media and disibilty rights uk

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

Um

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

Um, the disiblity rights 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,

That sounds good

I certainly do not.

I 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 my job, and disabled people

I know are out there.

They inspire me, they inform  me and

I couldn't do what I do without them.

So we're all in it together

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.