Jane's story

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 to 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 register 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. I wanted it 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 to 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 my 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 I had with three Children and living in a flat in the middle of London. Um 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 to 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 a lot of us are very resilient, I 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. So 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, um 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 in a way, and it was an experience that I 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. So 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, um 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 of 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 at the very top, so don't go down the bottom. I don't believe you're a member of the Lord 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 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, in of the illness at the time

Not a long time. 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 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

So 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 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 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. So 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 like a 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, to host because I I worked the if I don't have so and so that was hard work

But we we got our That's why I got my You can make your P. 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. I 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 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, 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 in 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 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 just We do that left side, and I think that will come up with the but absolutely

I want some people have a 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 a 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, like allowing them to 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

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 I I put up to I mean, basically, the government makes us 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 at 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, um you know, I've done it 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, 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 by the States the first time

You know, one we've got to be two. We've got to have to say that 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 if that's more and look at each to to the population, 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 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 it because they don't know they have. No, I do still, in the 20 century. So what it is to live as a class in a society in attitudes are still incredibly backwards and uninformed and and still very much within that to 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 a bit within that time to be very individual

Like 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 we work chances of 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 us all into one country or 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 So I think you've got to look more at hm 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 on vaccinations. Um, I think they Oh no, into supporting Good to go with an individual. So you go back and work afterwards

Um, but I wasn't really to support to people and social care support for that time, so 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 I 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 to ask you what? What do I not to support life saving equipment? Living at home during the my 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 I 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 hm immigration controls, so I can't recruit, but also because I 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, 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 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 of 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 a so that to support like, um, they're not impressed with it

So more investment in 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. 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? With the economy went into a recession, you're gonna pay the price. So the consequences of that that would be good to people

I hope that I hope the next time. 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 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 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

That makes sense. I hope we learn in. But there's a lot of hope that it I'm not certain about anything at the moment because everything's up in there

We 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 a policy. So 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. So what the revenge? I 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 it 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 more 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. We like you that have us on your I'm afraid it's just use our experience to do it better. So 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 so 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 what is trying to, 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, people, social media and disputed 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 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 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 a job, and people I know are out there

They, they me and I couldn't do what I do without them. So 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.