Transcript
Esi:
Hello everyone. Thank you again for joining us for another episode of part of me. So we’re here today with Rachel, who has agreed to be the interviewee for this month, and we’re really excited to talk to her. She’s waited for about 15 minutes, um, while I was getting my stuff organised, because I couldn’t plug in my phone, and then I dropped it on the floor, and it’s a disaster. So thank you so much for your patience, Rachel.
Rachel:
That’s right,
Esi:
And thank you very much for joining us today.
Rachel:
It’s great to be here.
Esi:
It’s great to have you here. So I thought that we just have a general conversation about kind of what you do and kind of how you manage and things like that for our listeners today, is that? Okay?
Rachel:
Yes, that’s fine.
Esi:
Awesome. So can you start by telling us you know who you are and what you do?
Rachel:
So my name is Rachel. I have a progressive disability. So I was went to mainstream school, but started struggling more and more, and then I went to university, which when I had started using a wheelchair. So all of life has been quite different at different stages, and as I continue to get worse, it limits what I can do, and I get very tired. So my fatigue is probably my biggest issue. So I’ve chosen to volunteer rather than paid work because it enables me to be more flexible what I can do that still do something useful other people and do something, my brain can get bored staying at home and watching day time tv.
Esi:
Although it can be good sometimes I’m not really a Jeremy Kyle fan, but I do know what you mean. Sorry. Carry on.
Rachel:
No, I was just saying it, no, it’s fun for a few weeks, but then it’s boring.
Esi:
Absolutely. No, absolutely. So do you mind me asking a bit more about kind of your progressive disability and what it would how it was like growing up, being able to do something sometimes and then not the other times?
Rachel:
I think that it’s quite odd, because a lot of my progression in the early stages happened without anyone really understanding what was going on. So things like I wasn’t carrying glass water around, and when I did, I had to have my elbow resting on a wall, and I sort of had to learn strategies for doing things without anyone teaching me, because no one really understood that it was difficult. And so at school, I was used to drink water at the water fountain after the meal. But, you know, I was drinking so no one was, was really worried. I think, I think you adapt quite a lot to things naturally. But it was when it got to the point where it was getting beyond the point where I could just find a way of getting around things that I had to start going to doctors and things and then having a diagnosis really helped, because you can write it on forms, so you get the help that you need when You’ve got a name for what is happening to you.
Esi:
Yeah, absolutely. And I think that, I mean, I didn’t know. I didn’t mean, okay, consumption, so tell me if I’m wrong. But sometimes, I mean, for example, my sister’s just been diagnosed with a mental health disorder, and I think that it helps knowing you know what, what’s going on. So for her that she’s not crazy, not that she is, but for her, in her mind, there is a reason for her reacting the way she does to things.
Rachel:
Yeah, it’s interesting. When I was a teenager, I thought I was really odd, and then when I got a diagnosis of having and disability, I thought, it’s not me being odd or something I’m doing wrong. It’s happening to me, it’s normal, it’s just not what everyone else is dealing with.
Esi:
Yeah, absolutely, absolutely, and I suppose I did it. Does it make it easier to find solutions to those barriers when you know that maybe they’re going to be a long term thing?
Rachel:
Yes, I think, I think it is. I think, I think the difficulties with how we progress the problem with what works now won’t be what works for the future. All the time, when I’m paying for adaptation, equipment and stuff, I’m thinking, How long will this work for? Because there’s no point of money on something that’s only going to work for a very short time.
Esi:
That’s true.
Rachel:
But, like I also having hoist was going to be a major, a major change, and feel like a really negative thing, but now I’ve got a hoist with the standing harness. I can still do a standing transfer, but I’m safe, and I can do it on my own. No, don’t need to peer with me. And I’ve managed to get a hoist that I can use on my own. That’s where it can actually transfer into the bed on my own, yeah? And although i i don’t have baths on my own, I don’t when someone’s in the house, I can now get the bottom of the bath, whereas for years, I was using bath chairs, which get you about 4inch in.
Esi:
Yeah, and then you’re really cold still. So be any water
Rachel:
It’s a real pleasure to be able to have a bath using a hoist. Yeah, I think it’s really interesting how equipment can look like. It’s making you more the same. I think I thought that a lot about my wheelchair when I first was in it? I think society’s impression of wheelchairs is that a wheelchair is about being disabled, but actually the wheelchair is what enabled me. So without it, I’m in bed all day, but because of it, I can go out, I can leave a house on my own. I can live on my own. I can do a lot of things that I wouldn’t be able to do without it. Yeah, I think my wheelchair has become a symbol of my independence rather than the symbol of my disability.
Esi:
I completely agree. I mean, I feel exactly the same. So we were talking on this call before we started recording about, you know, using a wheelchair, and you were asking me if I use my wheelchair indoors and I can walk. And when I was younger, I used to walk around a lot more, but I needed a lot more support in order to do so, and I didn’t feel safe about walking, and I was very slow. So now I can go really, really fast. And anyone that knows me knows that I’m always late, so it’s important to go really fast. I don’t have to wait for anyone. I don’t need to be worried. So it’s empower. You’re right. It’s really, really empowering. Having that piece of equipment that means that we can do what we want. You know, under our esteem, you to our own goals really and not waiting for other people.
Rachel:
Really bored of people saying you’re really brave. If i was in a wheelchair i wouldnt go out on your own. I think it is brilliant to be able to go out on your own, I think people don’t appreciate how big a deal things like that can be.
Esi:
I completely agree.
Rachel:
Every night I get into bed, yeah, I made into bed
Esi:
You know, I’m exactly the same. I’ve recently, I hope it’s not too personal for people, but I’ve recently found a way to be able to use public loos without support, and it’s really empowering. You coming out, I kind of congratulate myself every time. Well done. Esi, you didn’t fall down the loo. Well done.
Rachel:
Have you had any Strange people lift you off the bathroom floor.
Esi:
Not yet, but I am waiting for it to happen. I did have a situation a couple of months ago where my other disabled friend was helping me to the loop and we couldn’t do up my button, so we had to get a somebody behind the bar to come and do up my button for me, and that was quite embarrassing.
Rachel:
I have had three separate, no four I have had to call people. The funniest was John Lewis in a public loo and someone had tied up the emergency cord on the floor so you couldn’t reach it. I had to call my mum to call John Lewis I of course reinsured her i was ok but she had to ring them and say where I am and they need to come out and help me. And they sent 6 employees which was a bit embarrassing
Esi:
That’s quite extreme, actually, but at least it showed that they actually cared.
Rachel:
I think they was a bit nervous on what they was going to find
Esi:
How did they handle the How did they handle the situation when they got in there?
Rachel:
Well, I’m quite good at directing people, so I have quite a lot of strength in my legs. I just don’t have any coordination more like I need guidance to get up rather than someone to lift me. Yeah, so I think it just have to ensure that people are doing things that they won’t hurt you, also that they won’t hurt themselves, I think sometimes people are so worried about getting you up quickly that they don’t do it safely, And rather, people take their time and just think about what they’re doing.
Esi:
Yeah. I mean, it’s great though, that, you know, they obviously had some training. Sending six people is extreme, but it’s better than sending no one, isn’t it? And they obviously cared about the result. It’s great what you know, you can see when businesses, actually, you know, care enough to have that training or those expertise there to support people. Yeah, I was in a hotel last week, and I had to ask them, I’m staying on my own, and I had to ask them to come and plug in my wheelchair. And I asked them if they’d be happy to do this at check in. And they were really good. So they came to check on me to make sure that I was okay, to tell me that the person was being changed over, and they introduced me to the new person, so that I still felt welcome, comfortable for them to support me. And I don’t know about you, but I think it’s a little things that make the big differences. Really,
Rachel:
I think, I think that’s true, and I think it’s also about them listening to you. Yeah, it’s different. And I think if you assume that you know how to help a in quote, disabled person, then you get it wrong, because you don’t listen to what they’re telling you. Most people know what works for them.
Esi:
Yeah, And if not, you can work it out together, can’t you?
Rachel:
Yeah
Esi:
So it’s about supporting your right? It’s about knowing how to support an individual rather than knowing how to support a disabled person. In quotes, yeah, because every disabled person is different. Yeah, brilliant, excellent. So let’s, I mean, I like the way, I like the direction our conversation is going. I would like to talk about your work more, but I also just want to, if you don’t mind, talk a little bit about personal assistants and people helping again before we started we when we started talking today, we were talking about, I was talking about the fact that I don’t have pas around as much, and then that’s really empowering for me. And then you were saying a minute ago, how, yeah, you can have a bath with a PA in the room, but without that person being on the in the room with you, to give you that extra privacy, but also that security, that if something did happen, somebody is there.
Rachel
Yeah, it’s really difficult balance. I think because I had to go, I had to find out about psychological sport, with needing more help, because I was really struggling with feeling like my independence by having more help. And she made me write down like all the pros and cons of having a PA and not a real PA. And the interesting thing was, I wrote more flexible in having a pro of having a PA and a pro of not having a PA, but it’s flexibility in a different way. So I thought that was really interesting. It certainly helped me to have that psychological input. So I’ve always dealt with my disability on my own, mostly, but I think sometimes you just realise you’re hitting your brick wall. Yeah. And I think short term help to talk things through can be really useful, yeah, and that I my GP thought I was depressed because I went to him and said, I need to talk to someone about that. And I cried when I spoke to him to him, which is probably why he thought I was depressed. But I actually wasn’t depressed. It was just such a relief to admit someone that I did need help. And I think sometimes crying isn’t about being sad or unhappy, just about I cry when I’m frustrated, when I’m angry, when I’m in all sorts of emotions.
Esi:
I completely agree. It’s a release of emotion. I remember the first time I got Robbie Williams tickets, I cried, and I definitely wasn’t sad, but I was so overwhelmed with like excitement that I just burst into tears. So you’re absolutely right, that crying can be you know, it’s just a release of emotion, whatever that emotion is.
Rachel:
I think the problem is that if your speech isn’t that great anyway, when you cry, you become more difficult to understand.Event my mother can’t understand me when I cry.
Esi:
So it’s about, hang on a second, I’m gonna cry, and then in five minutes, we can start talking again. Let’s pause this conversation while I let out my emotions. Excellent, brilliant. Um, okay, so tell me a bit about the work that you do.
Rachel:
So I’ve done various things around Coproduction, working with other disabled people, but I really enjoyed particularly governor in the local school. Okay, it was a a school. It’s a mainstream primary school, but very positive attitude towards inclusion. And when I’d only been the governor for about six months, their head teachers said to me, you should think about being chair of governors. It was thinking I’m only 26 isn’t this something you do when you’re older.
Yeah, it was something I really enjoyed, and the children responded wonderfully and had great conversations. Children asked really good questions. They don’t ask while you were in a wheelchair. They ask you, how fast is your wheelchair go? And how do you steer it? You know, they’re really interesting,
Esi:
The important questions,
Rachel:
I think it’s great to normalise disability. That’s one of the reasons why I really support engaging because I think if children grow up with disabled friends in the class, you know, then, then it becomes part of normality. And I think it should be disability. Shouldn’t be separate. It should be part of a part of everything.
Esi:
I completely agree. And, you know, by normalising it in schools for children, if that, if they see disabled, if they see disability as nothing different or nothing that should be a taboo subject, then by the time they get to the workplace, they’re taking that with them. And so when we talk at the moment about, you know, people hiring, people that look like them, the people that they will be hiring will also be disabled people, because they are the people that are related to because they’ve been in primary schools.
Rachel:
Yeah, my favourite story was in year six, they were doing some stuff on disability, and the teacher asked the children, do you do you know and disabled people, and then children said, no, no, we don’t know disabled people, but I’ve been going in school every two weeks, and they were reception children, yeah, But if the teacher would of said, Do you know Rachel, they would have said, Oh yes, Rachel, but they didn’t see me as a disabled person they saw me as myself, which is such a positive thing.
Esi:
Yeah and I think that’s just it all, doesn’t it that, you know, we don’t, the children don’t have perceptions when they’re that young. And it’s as we grow older we learn we perceive from the media and from our parents and from sometimes our teachers how things should be, and that that’s when difference happens, but as you see, children can just see you. Well, that’s just Rachel,
Rachel:
She said to her mommy, that’s Rachel. She helps everybody with everything.
Esi:
Oh my gosh, that’s dangerous. Brilliant. Will you give me 1000 pounds? Please, Rachel, if you help me with everything, I need 1000 pounds. I mean, that’s great. I mean, so in So are you a Chair of the Governors at the moment?
Rachel:
No, I’d stop now. I had to stop because evening meetings were becoming quite difficult for me. And there’s trouble with being a volunteer is you don’t get access to work or any support to be a volunteer and, you know, the beginning, there was no accessibility school, so that made it difficult, because time when I drank very carefully around making sure I could sit through a three hour meeting and get home and go to the loo, yeah, but while I was there, we had an extension built, and one of the things in the extension was an accessibility so that that’s great for school, but there isn’t any money attached to governance. If a disabled child come in, they would get mine to build an accessibility loo . But, you know, there are parents who are disabled. There are lots of people and disabled, but there wouldn’t be any money attached to them. So, you know, a school which is a Victorian school, might not have accessible to a loo because you might stop people coming to parents evenings or school plays, you know? So I think it’s, it’s really good thing that they’ve now got one, but there are other schools that don’t.
Esi:
Yeah, I mean that the legislation seems a bit crazy because, I mean, obviously you being on the chair of governors, you can give your lived experience of what how inclusion should be and why inclusion is so important, and without people being able to access the building in order to give that Experience and those expertise, then how can schools develop?
Rachel:
Yeah, I mean the building accessible was good, because it’s all on the ground floor, so you have not to worry about stairs and things like that. I think there was just one step, and that was in the head teacher’s office, and I used to talk to her in the staffroom which was fine, yeah, I think I don’t. I don’t expect to be able to get everywhere. It’s making sure that, if you have a meeting, you have it somewhere for a can get to ah, you don’t. You have to be able to get everywhere. Yeah, yeah. I think having the loo makes a huge difference, and I think you misunderstand that disabled people don’t need to use the loo and i don’t know why.
Esi:
Where would they get that from? Like a super human power that you get when you’re disabled to hold it in or something.
Rachel:
Yeah. I mean, I know that some people have, like, um, casters and things, but my not, everyone.
Esi:
Yeah, absolutely no. I think that’s another assumption. It’s a bit, you know, strange, really, isn’t it?
Rachel:
Yes,
Esi:
yeah. So I wanted to talk to you a little bit about your experience as a consumer who is disabled. So disabled person as a consumer. And if there were any you know how you manage as a consumer who is disabled.
Rachel:
I would say that internet shopping is wonderful because you can, you’re very easily. You know, you don’t have to worry about things being on the top shelf. If you’re doing your supermarket shop, you can just order what you want rather than what you can reach. Yep. All bother to wait to ask for someone to get down for you, yep, and those. The other thing is that, you know, technology is becoming a lot more mainstream. So for my disability as really used to having, I’ve got an Alexa that I can turn lights on and off , because mainstream technology is cheaper than it would. It was just for disabled people, for everyone, yeah, but we benefit more than most.
Esi:
Yeah, I think so. And I think what do you think about the idea of us actually driving design forward? When I say as I mean disabled people being able to drive design forward? Because you’re right. I’m not going to say it too loud, because mine is in the background, and she’ll chip in. But, you know, Amazon, Echo designed this tool that is for everybody, but it’s also accessible for disabled people. So the more things that are designed with accessibility in mind, the more innovation will grow.
Rachel:
I think that’s very true. And I think, I think the companies are becoming more aware that they it’s good to like work with disabled people on their voice recognition software and things. So if you’ve got slightly effective with speech, it will still work. And I think that’s really positive.
Esi:
What would your message be to companies who say, Oh no, it’s too hard to work with disabled people and collaborate with disabled people.
Rachel:
I think it’s incredibly short sighted. I mean, so much of the world is made up of people with some level of disability, and if you cut up that whole market from what you’re producing, you’re losing a lot of money. It’s not just about trying to help the poor disabled people. They’re gonna pay for your product if you get it right in your interest, to involve those and take them into account.
Esi:
Do you think it’s hard to engage and consult with disabled people?
Rachel:
I think it takes more time initially, to properly involve disabled people and CO produce things as well, but in the end, you end up with a better product, which hopefully will need updating less often. So I think it probably, although it doesn’t save you money, I don’t think cost you anymore to do it.
Esi:
So you’ve mentioned this word, co producing, CO production a couple of times. Can you just explain what that means?
Rachel:
So coproduction is about the people who use the service, working with the people who run or design the service, and they do it together. And it’s also that involving people use the service right from the beginning. You can’t make something and then say what do you think that’s got to cope and coproduction.
Esi:
So we mean, we know each other because we both I mean, we’ve known each other years, but at the moment, we both sit on a strategy group and also are members of a panel in Hampshire, aren’t we called the personalization expert panel? Do you mind explaining a little bit about that and how that works in Coproduction.
Rachel:
So the group is made up of service using carers who use adults health and care. Although we’re trying to branch out and do more with the NHS as well. But the point is to get people who use the services all together in a room, and then get people coming and talk to us who are designing services or changing how services work, talk to us about what we think, you know, is a good way of doing it, or a bad way of doing it, or different ideas. Because I think sometimes people think, when they ask the users of the service what they want. They think people want more than they actually do. I think, I think a lot of people use social care, what more than you need, because it stops your hobby in life. So I think, I think sometimes people need design terms the right enterprise, by what, what the service users actually want,
Esi:
Yeah, and how much expertise that they hold, really, how much experience they bring
Rachel:
Absolutely because people doing a job will do it nine to five, maybe for 10 years, 15 years. But if you’re a disabled person, you’ve been doing it 24/7, for decades. Yeah, and I think it’s, it’s a very different insight. And when you, when you don’t get a day off, if you’re in a job, you get a day off if you’re disabled, you never get a day off.
Esi:
Yeah, no, I completely agree. And I think you know, going back to what we were saying about utilising the experiences of disabled people in designs of services, products or anything, whether it’s public or private sector, it just goes to show that if you do it right, then it might be difficult in the first place, but it doesn’t always have to be difficult, because there’s disabled people. They know other disabled people that have other experiences. So your panel members, or whatever group members, or however you’re doing it, are going to bring those expertise along with them anyway.
Rachel:
And I find networking in group is brilliant, because you find out things you didn’t know about, and you also teaching from different perspectives, because also people are different, and the benefit of having a group like that is that everyone’s really different point of view and experiences, and bring it together. I don’t think asking one person wouldn’t work, but asking group works well,
Esi:
Yeah, I completely agree. Brilliant. We’re coming to the end of our episode today. Is there anything else that you want to talk about, or you would like listeners to know?
Rachel:
I say that I think when you become disabled or you can be quite nervous about talking to other disabled people, and I know I was sort of 17 when I was diagnosed, and it’s quite funny, and I think in society, disability has quite a negative perception, but I think I have learned so much from talking to other disabled people, and under mean just people with my condition, I mean everyone, because people grown up with their disability have a different insight and different experiences, but I think all of it is really valuable. And as a as a newly disabled person, I found it really helpful to talk to people who’ve done it for longer? You know what i mean
Esi:
Yeah, I do
Rachel:
Not think not being scared of talking to people is important.
Esi:
Brilliant. Thank you. And then businesses, if people are in businesses as quite especially bigger businesses as quite often disability forums and allies and champions that disabled people can reach out to. So, yeah, reach out to them if they’re available
Rachel:
And I would love to a position in society where disability isn’t a negative thing, it’s just part of what happens.
Esi:
Yeah. Yeah, absolutely. Thank you so much, Rachel. I really enjoyed talking to you today. I’ll speak to you soon. Thank you very much everyone. Tune in next month for our next episode.