Transcript
Esi:
Esi, hello everybody. Thank you again for joining us for yet another episode of part of me, it’s brilliant, actually, because now I’m getting some really interesting responses from people that are listening in. So people are really engaging with this. So if there are any questions that further follow on questions that you would like to ask our interviewees. They’ve come out of the discussion. Please forward them along, and then I can send them to the people. So we are just going to get on with our with our next interview and our next interviewee. So today we’re joined by Ian loins, who is CEO of spectrum, independent living. So hello, Ian, hi. Hi, Esi. Thank you so much for joining us today. Very welcome. It’s nice to be here. It’s nice to be here too. So we’ll just get started, really, if you don’t mind, just starting by telling us a bit more about who you are, what your role is.
Ian
Then we’ll go from there. Okay, well, I’m Ian, I’m in my mid 50s now. I’ve been a disabled person since I was about nine, and I have, amongst other things, I have rheumatoid arthritis. I’ve been involved with spectrum for more than 20 years, and I’ve been the chief executive there for just over 20 years. My background was computer technology, and I ran my own business for many years as a computer consultant, but then I got to learn about the social model of disability. I started to work for Spectrum initially when direct payments, and nowadays I see it as a vocation as well as a job.
Esi:
Brilliant. So what is spectrum? Do you mind telling us.
Ian:
Of course, Spectrum Centre for Independent Living, it’s an organisation that’s run and controlled by disabled people, so that means almost all of our staff are disabled people, and 100% of the directors on the Management Committee are disabled people. And that’s by design, because the organisation is about making sure that disabled people have an organisation that represents their views and interests rather than anybody else’s, and it’s an organisation that’s there to support disabled people to live independently, and the campaign for a world that includes them in exactly the same way that non disabled people take for granted.
Esi:
Okay, so a lot of people, hopefully not too many, but some people would think, well, I’m not disabled, but I know what it takes to live independently and not to take things for granted. So why can’t I go and work for somewhere like spectrum?
Ian:
We do employ some non disabled people. My point is that our organisation is about giving control to disabled people, and therefore we feel it would be incompatible with that aim if we add non disabled people making big decisions about our organisation, and so where we have non disabled people working for us, they either do not have decision making responsibilities, or if they do, they are managed, both directly managed by a disabled person to make sure those decisions stack up to the way the organisation would expect. It’s always I’m not saying that non stable people don’t have a view, and some of them are very expert on the subjects that we work on. Our organisation is about giving disabled people a voice. We don’t claim to be expert on anything. We claim to bring our own perspective. We are, by nature, a peer support organisation, so it’s bringing our life experiences as disabled people to try and solve many of the barriers and the problems that disabled people experience that limits their life opportunities.
Esi:
And I think it’s important what you just said about peer support as well when we’re thinking about peer support for disabled service users that might be union service, but also disabled people that might be customers of a business or a service. It’s so important that disabled people themselves have people that they feel as though they can relate to, and they go through similar experiences to actually support them and say, Actually, I’ve been through this. This is how I managed it. Perhaps, if we work out what’s best for you, then it works for you. It’s easier for people sometimes.
Ian:
Yeah, absolutely. I think in my growing up and even today, talking to people who who have similar experiences in life, you have tackled some of the problems you’re trying to solve and found solutions, as well as things not to do. That’s very valuable to me, and I still find that an inspiration pretty well every day in my life. As I say, it’s not to say that there aren’t solutions out there that so called experts can bring to the party. Of course, I’ll listen to those, but actually, what I have found is that disabled people are pretty good problem solvers, simply because we have to be because, you know, there’s so many barriers even today in the world that we live, and they find very creative solutions to those that are often more practical and cheaper than the expensive solutions that may be out in the marketplace or proposed by by expert practitioners.
Esi:
It is, I think, I think that’s a really, really good point. Actually. Can you give us some examples of when expensive kind of solutions in place? But because of lived experience, somebody finds something a lot cheaper and practical?
Ian:
I certainly can. I struggled to open jars or bottles. I don’t have a good grip. I’ve got a drawer full, or I had a drawer full of gadgets that were supposedly able to help with opening jars and bottles. Didn’t work, quite expensive, some of them. What I found through talking to a friend of mine, disabled person had the same problem was a plumber’s aid, simply a strap that will grip anything pipe standard half an inch and bottles up to 12 inches cost me, I think, two pound 50. And I bought two of them 20 odd years ago, and they’re still in use today. So that’s a good example. You don’t, you don’t need a 10 or 20 pound gadget to open a jar. And when I had those, they only opened certain sorts of Yeah, so I had a series of them. They didn’t work very well anyway. And this strap that I’ve got now is doesn’t look very nice. It’s a plumber’s tool, but it works very well.
Esi:
It doesn’t need to look nice, and it’s such a good point as well. I mean, I quite often. I mean, for example, right now, it’s raining all the time, and on Monday, I got drenched through. I had to come home and just get in the shower because even my socks were wet. And other things. But I won’t talk about the other things, but I was looking for, you know, babies, they have these things that go over the prams they can drive looking for that there’s a wheelchair user, and there’s nothing on the market. Yet, there is something that I could buy in the local shop that on this specialist website, it’s going to cost me 200 pounds. So the things that are really needed, they’re not available, and the things that people can find everywhere, they’re at the premium.
Ian:
Yes, very often equipment for disabled people are ridiculously expensive. And very often I, yeah, I’ve been into mother care various times in my life to try and find solutions that work for children in first year might work for me as a wheelchair user. Very often they’re cheaper. Very often they’re cheaper. Feel a bit of a fraud going into another care without a baby. But nevertheless, I found a sun umbrella, because my skin is quite sensitive, so I found a sun umbrella that does the job really well. It’s just intended for push chairs, but it works well on my wheelchair as well.
Esi:
Yeah,so talking about inclusive design, designing with disability in mind. Do you think, and this is a I’m putting you on the spot, as my listeners will know that I quite often put my interviewees on the spot, which with questions I haven’t prepared them for. But do you think that there needs to be more design by disabled people? For disabled people.
Ian:
seems to me that the only way you’re going to have design that works for people is if they’re involved at a principal level in the design and even the specification of what what problem it is trying to solve in a wheelchair users will be very familiar that most wheelchairs that are produced nowadays function quite well, but they’re a bugger. They’re clean. In fact, some of them are very, very difficult to click keep clean. And I’m not, I’m sure designers who aren’t using them themselves won’t think of things like that. And maybe they, maybe that’s fair enough, but, but you know, not only is, is to my mind, these these equipment, got to be functional and solve the problem, but they have to fit in with your daily lifestyle and your preferences and the way you like to present yourself, yeah? And they shouldn’t call it. They shouldn’t make those things unduly difficult.
Esi:
yeah, yeah. I completely agree with you. I think you know, as a wheelchair user, there are so many things about my wheelchair that just aren’t even very accessible for me. For example, when I push down on my foot plate, the foot plate comes out, which is not very helpful. And people assuming that because you’re a wheelchair user, you’re not necessarily a weight bearer. Well actually I, for example, and both. So yeah, having it designed with disabled people, collaborating on disabled people themselves, designing the product, would make it a lot more valuable, I think, for people.
Ian:
Yeah, and I think those principles are being more widely accepted now, because it’s not only does it meet the needs of disabled people better. It means people are more likely to spend their money on buying that equipment. Therefore, people who make it have a vested interest in making it accessible. Nobody would buy a car if it didn’t, you know, people didn’t like the car, as well as whether it physically got you from A to B, then nobody would buy it. And so car makers have to have to do that by design advocate. Then, even in some cases say, well, people buy their equipment. In some cases, the state will buy them that equipment. But in either case, they should be designed in a way that ensures that they they meet all of the different needs. Yeah, the people who are using it. We don’t want equipment that looks clinical. We want equipment that just works, yeah, and allows us to function as ordinary human beings.
Esi:
Absolutely. And going back to what you were saying about peer support and peer kind of mentoring and things like that, a lot of disabled people are not in the know, so don’t know that these things exist. So having other disabled people that have those experiences to steer people through kind of the vast array of products that are available, either designed for or by disabled people, is really important.
Ian:
Well, it’s very empowering. I think meeting and working and talking with other disabled people who are doing things in their lives that you may well think, actually, I’d quite like to do that myself. Let’s see how they’ve resolved those barriers, and how they’ve managed to make that life or that activity work for them. And that’s quite empowering, because you can see other people doing things that you would aspire to yourself and help yourself to figure out how, how to do that, and how if and how to develop the confidence and the assertiveness to do that in your own life.
Esi:
Brilliant. So I mean, I just want to go back to something you were talking about earlier, about the barriers that disabled people face and that and the amount of barriers that we go through every day before even we get to the building where we’re working, that’s a really good segue into the social model of disability. I feel so for I know we’ve talked about the social model of disability on this podcast quite a lot, but I think everybody has a slightly different take on it, and it’s really important to reiterate it as often as possible, so it becomes normal knowledge for everybody. So do you mind just explaining, from your point of view, the social model?
Ian:
For me, the social model is a very important principle that has completely come to define my life. What it says for me is that my life and my opportunity should not be dictated by whether or not I can access the environment has been designed largely for non disabled people. What the social model does for me, it helps me to see the limitations that are stopping me doing what I want to do simply as barriers and that barriers can be removed or altered in a way that means I don’t have to change myself. I don’t have to go and look for a cure for my particular impairment, but what I can do is to identify and find ways of resolving the barriers stopping me doing what I want to do with my life. For me, what the social model doesn’t say is that I don’t need or desire medical solutions or clinical solutions, because I think we all, at some level, need that to work. So if there are solutions that make my impairment better or less painful, then of course I will take those but I should not be defined as to what my life turns out to be on whether those solutions are available. For me, it’s very empowering to see life in a way that he doesn’t require me to change my impairment, but requires society to look at, identify and remove the barriers and other people, same life opportunities everybody else just takes for granted.
Esi:
I think that’s really, you know, the way you explain it is a really empowering way that actually, there’s nothing that I need to change about myself. It’s the way that the society as a whole needs to work to adapt to the way I need I want to live my life. Yeah,
Ian:
I think particularly for people with impairments like mine that cause a quite a lot of pain. Is not to say those issues aren’t important, because they will be, in their own way, debilitating. And so what the social model doesn’t say to me is, you know, it’s all about society changing, and nothing to do with me as a human being, and you know, the issues that affect my body. But it’s it is about saying that the barriers which society are in control of, and most of the things that stop me doing what I want to do in my life are not about my impairment. They’re about the barriers that, you know, I can’t climb steps, etc, etc, and those things are eminently solvable, and should be. We still live in a world where, whilst we’ve made big steps down that road, we still have a long way to go.
Esi:
But I think you know, going back to what you’re saying about the medical side of it, the social model and the medical model, they have to work alongside each other. They don’t exist without each other, because in the simplest forms, if we can’t recognise that there’s a problem, then we’re not going to do anything solve it. And also, I think you know what you were talking about, about being empowered to make the choices for yourself, the social model in you know, the attitudinal part of the social model says that, you know, disabled people can think for themselves, and they have the right to make their own decisions in the most basic form. So if we did recognise that part, then doctors wouldn’t be consulting with disabled people about their pain management and about their medical needs.
Ian:
The difficulties, I think, with with a medical model approach is that it it dictates the solutions to disabled people’s lives have to be medically based. So for instance, say, if they can’t cure my impairment, currently can’t be cured, then ordinarily, they would develop techniques and contraptions to help me to walk, albeit that may be walking very badly, whereas for me, using a wheelchair is a much more practical solution, and I see on the news fairly frequently now that you know, very expensive scientific adaptations to allow people who may be paralysed to walk using exoskeletons and all the like, you know, that’s an interesting scientific gadget, but I would strongly question the practical use of such gadgets, and to my mind, the cost and the money that’s being spent on developing, you know, things that suit scientists could be far better used to solve the day to day, more practical experiences of disabled people and the cheaper and more effective solutions that we’ve come up to solve our lives. Yeah.
Esi:
I mean, that goes back to inclusive design and working and collaborating and CO producing with disabled people, doesn’t it if scientists sit in their room, and their science room without any input from anyone else, then they’re going to design again what they think is best. But if they talk to people with that experience, then it can be a more open solution for everyone.
Ian:
To use my example of people who are paralysed. You know, if they if this mindset to find a solution and say, How can we help that person to walk because they can’t walk? Surely it would be easier and and I would argue better, to find a solution that doesn’t accept it that that person can’t walk and probably will never be able to walk, as in the same way that non disabled people walk. What is the difficulty in creating environment and a wheelchair solution that enables that person to get around just as well as a walking person? And that’s how I get on with my life, and I can walk now without being I can get around town without being tired and exhausted and in pain, and keep up with my non disabled friends and acquaintances without having to think about whether I can walk where I’m going to fall over, whether I’m going to be in pain or exhausted at the end of it. Why isn’t that? Why can’t that just be a better way of doing things?
Esi:
But it’s again, there’s assumptions, isn’t it, and that comes into the social model as well. There’s assumptions that there’s a better way of doing things. There’s assumptions that non disabled people who can’t walk, obviously, they want to run and jump like non disabled people, but for disabled people like you’ve just explained, and I feel exactly the same as you that actually I don’t mind sitting in a wheelchair if it gets me from A to B faster, and I’m not exhausted, I’m not worried about falling over all the time,
Ian:
Yeah, yeah. You know, different solutions for different people. But It troubles me sometimes when, when you do see, particularly on the news, these new developments, and you see people who’ve been, who’ve had, you know, whatever accident is, it leads them to being a disabled person. I always tend to think of people who are paralysed because they the ones that seem to get the most expensive scientific, you know, buffing type solutions, and they might get such that the only way that they can solve the issues in their lives is to find a way of removing their impairment. My impairment is part of who I am. I’m proud of being a disabled person and and I, and I think, should there be a cure for my impairment, then I would strongly question whether that’s something I would want to take simply because it’s who I am now, just as in the same way that, you know, I’ve got a colour of eyes I’ve gotten, you know, being a man rather than a woman, that’s part of who I am. Why would we want to change that? and surely, if we can help people to accept who they are as human beings, be them disabled or not, rather than always striving to be somebody else, then we’d have a much more balanced and effective society.
Esi:
So do you think that acceptance, because I completely agree with what you’re saying? Do you think that acceptance that Acceptance comes from a internal thing, or does it come from an external world, maybe even the media and people’s assumptions about what disability, disabled people should be and what a human, a person should be, and what they should look like and how they should act.
Ian:
I think, I think is a mixture of internal, external influence. I think the culture and the world we live in sees disability and disabled people in a generally very negative life. So being disabled is a bad thing. Using a wheelchair is an awful thing. And I think if you can help people to be proud of who they are, rather than aspiring to be somebody else. You know, we see that in the media all the time, people aspiring to be like the slim, beautiful model walking down the cat work, cat walk, rather than just accepting them for who they are and being proud of who they are. That’s the key word for me, being proud of your own identity and the way you and the value you have as a human being to society, rather than constantly wanting to change yourself into somebody else, and which may well be unachievable and not even in the best interest of you or the rest of the world. And a lot of society’s ills, I feels are caused by that constant media barrage about the perfect individual who we all know just doesn’t exist. You know, I think we should be helping people to feel comfortable with who they are, to look at how they can resolve the issues in their lives, to allow them to achieve what they want to achieve. And I don’t just mean disabled people, and now I mean everybody. We live in a world that’s very fixated on a perfect image, and I think that’s deeply damaging to every single human being on this planet who are in no way perfect. You know, that’s deeply damaging, and I think is insulting our intelligence as well.
Esi:
Agreed, So. I mean, you, you’re a CEO of your of your business. Is it a business?
Ian:
It’s a it’s a community interest company, so it’s a not for profit business. We’re not a charity. We don’t believe disabled people should live off the charity of others. They should have rights, and therefore, we refuse to be a charity. For that reason.
Esi:
Good answer. So you’re a you’re the CEO of your community interest company, and obviously, as a CEO, I’m imagining that you’ll be a line manager as well. Yeah. So part of me is a podcast that talks to businesses and people within businesses about how to make that business more inclusive for disabled people. So talking about what you just talked about, about developing a society and developing a culture where we can be proud of who we are as disabled people, what are the takeaways that you would give to managers who are managing or are looking to manage more people that might actually be disabled.
Ian:
I think the first thing to say is, any business does well, if it’s customer base, represents everybody in society, so everybody feels, yeah, that’s a company I would quite like to do business with. You’re far more likely to do that, achieve that aim if your business employs people who represent that broad cross section of the community we live in, including disabled people. Disabled people, depending on which statistic you read, of somewhere between 12 and 20% 15 is a kind of nice round few million people out there, and about 10% of those people are themselves wheelchair users. So the common image of a disabled person is a wheelchair user. We represent quite a small percentage. But disabled people as a collective is many millions of people in the UK economy, and we all have money to spend. I won’t bore you with the statistics about how much that is, but if we are as businesses to develop a successful business, and for most people that will be generating profit, then we do that better by having people who represent the customer base. We do that better by having problem solvers, and we do better by having people with different ideas about how to solve problems, we know have explored previously, even in this interview, that disabled people are good problem solvers because they have to be just to get out of the house in the morning, they have to be pretty good at solving problems. Any business worth their salt should be seeing disabled people alongside every other person as an asset, and if they have and and looking at the difficulties of employing disabled person in the in the light of barriers that can be removed. So if it is the built environment, you know, steps or desks not being the right height, then they can normally be resolved very easily and very cheaply. There’s quite an old review now, but HSBC Bank did a review of their disabled employees and the facilities they needed to make their office environment accessible. And for most of those, all be it 15 years ago, those adaptations cost less than 50 pounds. If we look at how much we pay those staff is trivial, and very often businesses should just work with, talk with, and be led by the disabled person that they’re seeking to employ to find those solutions, to have an attitude where their access needs will be met as a given, that person will be far more productive. They’ll be far more loyal to that company, and they’ll and the company will prosper because of that.
Esi:
Brilliant, Excellent thank you very much. We’re coming to the end of the interview. I just wanted to ask you a little bit you keep referring to disabled people as disabled people, and not person with a disability. So for you, is that a conscious decision, and why do you make that decision?
Ian:
Okay, First thing to say is, I’m not overly precious about Okay. I think political correctness is a misused, misunderstood. For me, it is about having using words that people find comfortable, particularly if using them to describe other people. And it seems to me just good manners. Use words, don’t use words that you know they’re not comfortable with. For me, disabled person probably represents who I am. I’m a person. I have impairments, but what disables me is a society that fails to understand and meet my needs. My impairment is part of who I am, but my disability is caused by society, and therefore society owns that disability, not me. If I’m a person with anything, it’s a person with impairment.
Esi:
Okay, brilliant. Thank you very much. Is there anything else you would like to share?
Ian:
No, I don’t think there is actually
Esi:
Well, thank you so much. Ian, it’s been so informative, and it’s brought something new again to the podcast, which is really beneficial. Thank you
Ian:
Your Welcome