Living With Dystonia w/ Andrew Russell

Speaker 1 00:00:05 Hello, and welcome to today's episode of Accessibility and Me. I'm Monica Se from Royal Holloway University of London, and I co-host this podcast with Juan Brunai from Ivy Business School in Canada, and Luke Kauflin, also from Royal Holloway. Speaker 2 00:00:21 Our guest today is Andrew Russell, trustee of Dystonia uk, the UK's only national charity dedicated to helping people living with dystonia. Speaker 3 00:00:34 Andrew, thanks very much for joining us today. What is dystonia and how does it compare to other neurological disorders? Speaker 4 00:00:41 Okay, that's a good question. Um, the base of the brain is the signaling to your muscles, and with dystonia, the signaling becomes confused. So as you can see from some of the movement in my head, the messaging is, is, is not right. It's, it's, it's, uh, messaging is fighting, so muscles are fighting each other. Uh, with dystonia, you can now generalize dystonia where it affects the whole of your body or more, more likely it's one particular part of the body. My side really, um, with me is my neck, uh, and my head and my left side. Um, as movement disorders go is the third most common movement disorder. So it's as common as Parkinson's disease is probably as common as multiple sclerosis. But I think what makes, um, dystonia a poor relation to say Parkinson's or multiple sclerosis is that it, it gets to become a condition very often in midlife. It, it escalates for about five years and then you're left with it. So it's, it's not gonna kill you. Is my balance sort of way of putting it. Uh, it's not, uh, an acute, uh, disability of acute illness. Um, essential tremor. It's the most common movement disorder. And again, I don't think people are hugely aware of it because it's a nuisance and it, it is a disability, uh, but it is very treatable. Speaker 3 00:02:08 What accessibility issues do people living with dystonia have at work? Speaker 4 00:02:13 Okay, another very good question. Um, if you have generalized dystonia, then there are people who can only operate with wheelchairs and there all the mobility issues of things being accessible, ramps, uh, no heavy doors. Uh, ideally everything on the same level would come into play when the condition is like mine. Uh, with my own personal experience, um, it's more with the, the day to day movement. So when it's, and it fluctuates, I then that's the other thing to emphasize with movement disorders and neurological conditions, you can have very good days and then if you're fatigued or stressed or you have a busy week, it can become markedly worse. Uh, so the, the accessibility ones are more subtle. Uh, so it would be eating and drinking maybe more of a problem because of the muscles discording or fighting each other. Um, writing and typing particularly. So accessibility as regards being a, you know, work being accessible as somebody who's able bodied voice, active activated software is particularly useful. Um, adapted mouse, uh, a multi adjustable chair are all very useful and obviously in awareness for other people of, of what the condition is. The only thing I would add to that is, and I'm probably jumping to another question now and you might take this out, is access to work is the, you know, the scheme really that can help with these more subtle accessibility issues. Speaker 3 00:03:44 Has the pandemic made workplaces more accessible? Speaker 4 00:03:47 Well, there's a great irony there because, you know, I was, I was diagnosed in 2005 and um, I had an assessment to work through the, the government's access to work scheme, and one of the things they highlighted was it would help, I worked in the center of London, so I'd have this an hour and a half commute in and a now commute out. And although I was offered a taxi to to, to go and it was still a long journey, but po it's pre pandemic, it was very difficult to, to get permission to work at home. Senior managers would do it, Um, for a lot of other people it was reluctantly given, so I was given it, but in small amounts. And now it's the other way around. The, the workplace has become the home. Uh, and I think the challenge is as Boris sort of waves away all the restrictions, uh, is, can, can people with disabilities keep that so that they can get up, uh, you know, and save all that energy and, you know, work at home, um, and also be able to work in the workplace, which I think is very important, but have that hybrid choice. Speaker 4 00:04:53 Um, so I think that's the main thing. Speaker 3 00:04:55 What are some of the negative aspects that you found from working from home? Speaker 4 00:04:59 I think the main negative aspect is something that affects everybody and a social isolation. If you're on your own, I think it's affected, It just just happens. You're working through a screen, you haven't got personal contact. We're human beings. We like that person to person face and interaction. I think it's very important. Per speaking personally, I found, I found it quite liberate liberating on one level in that I've been involved with more staff meetings on the screen. Um, so I haven't been not included. Um, obviously with people with families, you've got to work around all the activity that might be going on in the home. And also there's the health and safety aspect. I mean, I work in the kitchen because, uh, often my partner's in the living room, we live in a small flat, so, um, there may be more constraints and more things to be aware of than if you are working in the workplace. Speaker 3 00:05:55 Looking back over the last couple of years, how has the pandemic affected the social care that people with dystonia receive? Speaker 4 00:06:04 Uh, I'd almost say that it's as though the floor dropped away from the, the, the kind of medical and social care that you got. I have as to say, watch line tox injections to at least moderate be the neck and head movement. And those got stretched out to a degree when you didn't know when the treatment was gonna come. Normally there'd be every three months. And then the onus really comes onto to me and, and I'm sure with many people with disabilities to chase the treatment which adds, um, uh, anxiety and depression and exaggerates the condition so that that's a problem. And I think at that gps, I had a GP who had diagnosed me, knew me, well, he retired just before the pandemic, and then suddenly I couldn't see anybody face to face, couldn't explain or be seen. Uh, I only seem to be able to have telephone calls with different gps, and there was that disconnect where I don't think they really had a handle on the condition that I had. Speaker 4 00:07:06 Um, and so yeah, it compounded things. And what tended happen was when I was seen, I was given more medication, the saying, Oh, you were anxious and depressed, um, here's some more pills. So you kind of lose that, uh, personal contact. That care I think is so important. And, you know, there's possibility of being more medicated, which isn't the answer. And then the peripheral, I say in my case, more peripheral things like, um, occupational health, uh, seem to disappear off the map, which, you know, are, were great for me, you know, I used to see them every three or four months, either for a home visit or going to the hospital. Um, and I think there's, there's a one other thing, Um, yeah, access to work now in the workplace, the access to work scheme would, would help and also re-review your workation and everything and the moving around of the workplace, but they wouldn't deal with the home situation. So suddenly, you know, I was working at a gate leg table with an old chair and all the benefits of, of working, you know, at work, you know, I had the, um, quality equipment that I needed really, um, had to be redone. So, uh, yeah, it's been a challenge. It's been a challenging time, I would say. Speaker 3 00:08:31 What improvements have you made in terms of social care or therapeutic treatments for people living with dystonia Speaker 4 00:08:39 At dystonia? Stony UK had had a program going to educate gps. A lot of gps, um, don't know a lot about rare neurological conditions, so sometimes you end up speaking to somebody who doesn't really know what the condition is, they'll have your medical notes, but the, um, they're often difficult to read. And so there's some miscommunication there. Social care generally to see occupational therapy and other, um, support services come on the stream again. And also for people with all disabilities, being aware of more local services that, that, um, often available nearer to home rather than, uh, probably a specialized hospital that you're going to for reviews and treatments. Um, and that's something dystonia UK and the Neurological Alliance are constantly working on. Speaker 3 00:09:30 As a final question, if you could have one wish for the future of workplaces, what would it be? Speaker 4 00:09:35 Inclusivity, Um, you know, I'm gonna expand on that. I know it's just gonna be, should be one point. But, um, to get more disabled people into the workplace generally. Do you think less than 50% of people with disabilities are in work? And I think, you know, there's a myth partly fed by the tabloids that people with disabilities either don't really have them or don't want to work, and they do. And I think if more people were supported by the access to work scheme and uh, by enlightened employers, then the whole view of disability would change. People would see the people with disabilities as able, uh, loyal, conscientious and flexible. Because I think if you, you know, whether you're born with a disability or you gain it in midlife or whatever, um, you face a lot of challenges. You have to develop a flexibility, uh, a resilience to work through it all, which I think would, would show in the workplace. And, uh, it would, you know, disability would be seen in a more understanding and sympathetic light. It would be good for society. Speaker 3 00:10:46 Absolutely. Andrew, thanks very much for joining us today. Speaker 4 00:10:49 Thank you. Speaker 1 00:10:55 Thank you very much for listening to today's episode of Accessibility in Me. We hope you enjoyed it and we'll tune in to our next episode. We would like to thank the British Academy for funding today's episode.