Hello and welcome to the DisruptAbility podcast. Today’s interview is with Cork man, Johnny Murphy, who shares his incredible story and also gives us a roadmap to disability in the 21st century in Ireland. Thanks for listening. Jesus. Johnny Murphy. I finally have you on my coach. It’s taken awhile, you’re here now. But sure, look, yeah, It’s quality! Well, you got through security anyway, and we’re here to, we’re here to tell the story. Johnny, I met you about a year ago through the Cork access group and you were so welcoming to me when I came in the door. And when I told you I was vision impaired, you were the first one to say, I’ll give you a spin. Where do you need to go? Bring you back into town, wherever you want to go. Um, you were so understanding . . That that’s how we do it. That’s how we roll. And I now consider you a good friend. Absolutely, and likewise And we’re both on the same page in terms of we want to see some changes around the attitude to disability in Cork and in Ireland. Absolutely. So I started the DisruptAbility podcast and I would love you to tell your story, if that’s okay with you. I suppose in 1990, um, I broke my neck off a motor bike. Um, I was coming out of Carrigaline, come and down too, nearly into Douglas and Carrs Hill, um, bus pulled out in front of me, hit the back of the bus, uh, helmet, broke my neck in two places, passenger broke my back, with a helmet, Mad! Um, in two places. Um, so I was at the side of the road, um, they said I was dead. Um, and luckily, what are the chances, there was a doctor and nurse on the bus, they cut my throat here and gave me a trachy, put a straw like a McGuyver like, um, from, you know, Capri sun or something like that in to my throat, got me breathing again, and ultimately I was in hospital for 12 months. Very, very lucky to be rehabbed up, um, in the NRH in Dun Laoghaire, um, to be able to walk and got on with my life and got working. I’m fast tracking here I know, um, and got working, had my own business, a car dealership, um, for 20 odd years. In 2011 I got ill again. It was like Groundhog day. I was re-admitted into the NRH again, um, like an NCT or a full engine job or whatever you want to call it. And here I am sitting on your couch talking about disability cause that’s my passion. I suppose I would call it that. That’s my hobby. Um, I’d like to see changes in people getting employed. Um, I think there’s an opportunity for, um, for businesses, I think there’s an incentive for businesses as well that could improve, um, the more incentive that there is there, the better and more employers decide, Hey, yeah we’ll take this person on. Yeah. Um, you asked me a question earlier before we came on camera. Um, what would I see? Um, what would it, would my vision be? Um, how would we get this to happen? I think employers need to ask questions and an awful lot of them. Um, and don’t be afraid to employ people with disability. I think that’s the big thing, isn’t it? A lot of people, they’re afraid there’s a fear around disability. Yeah, absolutely. And like I see it, now, I’m working in a garage again, um, just part, um, and enjoying it and I see it. People are very, very afraid, they don’t want to say something out of the way, you know if Johnny’s hands are shaking with spasm or something like that, they kind of look away and I’d make a joke about it and that’s my way of coping and dealing with it and they are cool then, but it’s all that kind of way like there needs to be something that, not only are the employers, um, educated on it, but the employees that people with disability will be working with need to be educated on it. And it’s kinda case by case scenario where Johnny doesn’t mind someone saying, once I gave him my blessing, Johnny, your hands are shaking or whatever and making a joke about it or, um, where some people would get offended, absolutely. But, um, I suppose there is a huge opportunity for employers because I’ve always said, because as you know, I served on boards in Dun Laoghaire, um, on charities and stuff like that. And I’ve seen, um, I’ve seen people with a disability, so educated on disability, like you can look at a doctor or a clinician or any of them and they’ll maybe turn around to you and say, well, you’ve have pain because it’s X,Y and Z . . . it’s not until you speak to someone with an injury similar to yourself, no matter what it is, whether it’s a vision impairment whether it’s a hearing difficulty, whether it’s a physical disability and you start saying actually, everything he’s saying is dead right, or she’s saying is dead right, I remember just a quick one, I was above in the charity and spinal injuries Ireland and there was a girl working there and she was looking after Facebook and Instagram and all that And I was saying Jesus, my hands, and I used to call it and said to doctors, my hands are numb. I can’t feel it. And she said, that’s called the snow glove effect. And she probably made it up, I don’t know. But it was absolutely spot on. You know, you go into a shop, you put your hand out for change, change just falls everywhere. I used to smoke, when I smoked I used to burn my hands, I couldn’t feel it like, so I gave them up because we were getting annoying . . Because the nerve endings are damaged as a result of the spinal injury? Absolutely. Absolutely. So the nerve damage is done on my neck on, it’s called cervical tree. And the damage is there. It’s there forever. Probably the older I get, the more my body is getting older quicker, if you know what I mean. So if I was an ordinary, 52 year old, and I know everyone that’s watching this is gonna say, he’s not 52 is he? But yeah I am. Um, I nearly am as well, so, but we’re gorgeous aren;t we?, We’re a good vintage. But like I’m 52. My body is probably of 70 year old or similar to it. So my mobility is strained from it. So, you know, it’s, it’s handling it and there’s still other factors like the factors that people don’t talk about that I have no problem talking about you have bladder, bowl issues and they’re like, especially for women, especially and men as well that’s wrong to say. Um, it’s all embarrassment. It’s embarrassing and you don’t even want to speak to a doctor about it. But like again, from speaking to people and being involved with people with a spinal cord injury, they’re kind of saying, you know, you leave your, you kind of leave it all at the door. If you have issues you need to speak about them because you can’t suffer in silence. And I though that was a great thing someone said to me. Absolutely. Yeah. This is perfect. And I can identify when you were saying about, you know, you have a 52 year old body, but it’s probably behaving like a 70 year old body I’m exactly the same with my eyes. When ophthalmologists look in my eyes, they’re like, you’re a 51 year old, but you’ve got the eyes of an 85 year old. You know what I mean? And so it’s the way our body’s reacting. Isn’t it just amazing though. And I find this as well, like you know, people in wheelchairs, very similar issues than I have. And people said, well, you walk and you’re very lucky. That’s the exact same injury. It’s just my muscles are slightly stronger in my legs to be able to give me the ability to walk. Um, how long that’s gonna be there? I don’t, know. Okay. Am I going to be concerned about it? Um, not necessarily. While I would be, um, concerned about is maybe being being a burden on my daughter or whatever or when I, when I get older and she gets older, you don’t want that, do you know what I mean? And that’s why we need to make those preparations or think about what we do want, plan B at a certain stage, if we can’t live independently that it isn’t, I agree with you, we don’t want to be a burden on our children. And I think, uh, I think governments need to look and say, right, we need to have kind of a, a care at home setting for people with disability and people with disability alone. Like, Oh, I’ve heard of a case there lately of someone in a care home, 32 year old person, very high quad and they were inside in a care home in Dublin, that’s not right. We need to get over that and we need to kind of crack whips and say we need to get housing for these people. We need to get them sorted, if you know what I mean . .. Yeah, but housing that is accessible and also has good security but then if they do need medical attention that it’s there. It’s a phone call away and allows for carers to be able to look after them because it’s the independence of it. I know people that are high quads and they’re working, um, one person who’s working for a bank, very nice gentleman, but yeah the bank went away and they said, yeah, we’ll give you your job. He had a job prior twas a rugby accident he had and he got his job again. I think that’s great, you know what I mean, But that’s what we want to happen, right. Because the majority of people who get disabilities are like us. They acquire the disability between the ages of 18 and 64. So generally they are working. Yes. So as well as acquiring the disability, you don’t wanna lose your job! And dealing with all the shite, sorry, for using language (laughing), but dealing with all the shite you have, um, and that is stressful and that is so, so difficult and some people’s tolerance is way higher than others so some people unfortunately fall off a cliff and become very, very unstable. And some people maybe I wont say thrive but, cope. I think cope. And I would say from my own experience over the last 30 years of living with disability, most of the time, you know, it’s up and down. But there have been nosedives.I talk about it very openly where it just does feel too hard. Oh it is yeah. I agree with you. Society doesn’t make it easy. Call me a person, glass half full, but sometimes the glass is empty. Do you know what I mean? And you’re saying Jesus, this as awful. This is hard. It’s hard work just to keep going. What gets you by though, just to get back to the work thing. What gets you by is actually being able to work. Because you know, if you’re having a bad day, pain would be a big issue for me. If I’m having a bad day. It’s like someone said to me, it was a, and again it was someone with a spinal cord injury. It’s like pain is like a child with a toothache or us with a toothache, if you give someone something else to think about, the toothache goes away somewhat. Do you understand what I mean, Distraction Therapy Fair play to you I didn’t think of that word, but very good. I use it all the time. Um, yeah, you know what I mean. We want to give hope to younger people with disabilities. Say, if it has happened to you, yeah you gotta it’s a raw deal that’s not a good maybe deck of cards together at the same time. Life isn’t over is the best way of putting it. And we want employers to have the confidence and the tools to employ disabilities. And I think the tools is the right thing to say and governments and councillors need to give them the tools they need. Um, I think there is an awful lot to be said for, we say charities sector should get to finger out as well. They need to say, if you have a charity for physical disability and they should train themselves up to be able to say, right, this is the training you need, if we can help you in anyway. I do know the national learning network are very, very good at that. Yes. I know all the lads up there. Um, the instructors and stuff and I find them very, very good. They do and they get jobs and they’re trained and ready. They’re work ready. Yeah, yeah, yeah, yeah. And like, daycare, and rehab because of all the craic that went through and that stupidness about salaries and stuff like that. I think they’ve cleaned up their house and that’s important and that needs to happen in every charity, you know. And I mentioned to you off camera, that, I feel charities need to physical, physical and mental disability. They need to be able to turn around, and all the charities and talking about every single one, they need to employ more people with disability because you can’t turn around and say, right, here’s Johnny, he has a spinal cord injury. Um, you should employ Johnny because he’s great. Right? But you’re an able bodied person telling this to an employer that shouldn’t be, it should be a person with a disability that, the person that needs employment. You can actually tell them, yeah, this is where I think I’m good and this is where I’m goosed and you know, so if Johnny rocks up with a spinal cord injury and says, right, I’m working for such and such an organization. We’d like you to employ, um, Morris or Pat or whatever on Mary. Um, because this is what they’re good at. Yeah. But if you’re the person with the disability, so, okay, right. He’s up and about. He’s, he’s working, he’s the ability to speak do you know what I mean, and he knows exactly what this person can do and actually can’t do. And they’ll explain that to me. You know shake hands, thanks a million for employing Pat or John or Mick Yeah. Give the confidence to the employers saying this is how to deal with that. They can come back to that very person. It’s like selling a car. You want to, if you’ve an issue with a car, you want to go back to the person that you bought the car off of because you have the relationship with them. You know, it’s kind of a supported, you know, winning mentoring, I think they call it. Prior to your accident, were you working in the car industry? I know you’re working in the car industry now. I was, I was working as a panel beater and spray painter. Was I good? I don’t know. It was so long ago. Um, but yeah that’s what I did and luckily enough, I’d enough contacts in the industry, that I got a job doing a bit of running around. Okay. Um, and fair play to them they took me on. Uh, he was a friend of mine and work came from that then? So I got into the sales part of it and eventually I became self employed and ran me own little organization for a good while, which I loved. Yeah. And it was great fun. Um, now, see, I suppose, the downside of it. When, the downturn came in this economy, it put an awful lot of pressure on me to work because you couldn’t afford wages so you were there and, you were saying to yourself, right? How am I going to cope, you are doing 60 hours a week. I was doing 60 hours a week and something had to give. I remember going to my GP one day and I was saying, I am kind of fairly bad. My hands were shaking. Uh yeah, but listen the stress of running your own business and the economy going down yeah And he says, if you don’t pack up this week you’ll be in a box. So I said, okay, so you have to know your limitations. Now, that was my limitation and it was miles past my limitation. And I suppose there was the embarrassment or failure that I didn’t want to pack up, but it was going to kill me, like it was other family members, I have to look after, I’ve a daughter. Um, my mother is still with me and it was important that they’d see me. But that was a very, very distressing and tough time for me. I bet you it was. But the best advice I ever got years ago was someone telling me stress will make any condition worse. Absolutely. And so, yeah, and I’m like, I, I do get stressed and I do get anxious, but I have to be very aware of, okay, it’s your body’s reacting, you’re getting stressed out and that’s not going to help these (eyes). So I have to remember to calm down the stress. And I would say that to any young person with a disability, really looking after your mental health and your stress levels and your anxiety and it’ll really help you’re condition as well. We’re all connected. Sure. When you look at like, you know, getting back to the employers and that’s why we were speaking. Um, I think, um, employers out there are looking and they’re saying, right, I take this fella on and he’s bit disabled and will I be able to do this and do that? He’ll have to look that he’ll be disabled someday. Cause that’s the way it goes. Absolutely. You know, mobility will fail. Well that’s what the world health organization says that everyone experiences disability at some stage, whether it’s temporary or permanent. Yeah. Family members. Parents, Someone you love . . Yeah. You’ll experience disability. That is the way it is. Yeah. Yeah. What can we do? And what you mentioned there is as well because we’re living longer, not that everyone who ages gets a disability but you’re more likely to acquire a disability as you age as a result of aging or an accident . . And I suppose a very good friend of mine and I’m sure he won’t mind me, mentioning him, Colm Hooley, who worked then the organization and I admire hugely and is a book of knowledge when it comes to disability and Colm is a wheelchair user. Um, but Colm said a great thing, he said we are the first generation of people with spinal cord injury to live to this length of time. Yes! Colm is 60 and I’m 52 and there’s kinda the boundary that people kind of snuffed at or whatever. So we have improved in health to kick the can down the road and make us live longer. How long? Don’t know, but no one can say I’m gonna live for bloody ever. I’m going to make a hundred no, you’re not like, yeah, We don’t know and none of us know. But what’s interesting as well, I think we’re one of the first groups of people with disabilities who got a good education and who are now able to speak up and be advocates for ourselves. And activists for ourselves. We’re not relying on able bodied people to take up the gauntlet. We’re very well able to say what we need and to make sure that the next generation don’t have to fight as hard as what we did . . What really annoys me is to hear people that are able bodied trying to speak on our behalf. It really annoys me. I think it is insulting and I do, um, that’s, you know, we are like, of all the people I know with disabilities bar none every one of them are highly educated. And well able to be assertive. Like, you know, they have so much to give to say if you lose we’ll say a leg or an arm or whatever your sight, your hearing becomes better you know, that kind of way or you’re hearing goes, your sight becomes better. Um, but you get, you use other assets in your body better if you know what I mean We’re compensating. Yeah. Yeah. . . .. Johnny, I met you through Cork access group. Do you want to tell the listeners a little bit about Cork access group Cork access group is around for I think about 25 years. I’m in the Cork access group about six years. It’s, it’s absolutely fabulous group as you know. Um, we basically deal with access, um, issues in Cork. I’m luckily enough as well, um, that the guys asked me to, um, be on a group with, um, Cork city council. So we go and we, if we see an issue with wheelchair parking or whatever, we go and, and the thing we said to them, they take seriously, and they address the matters 9 times out of 10, and it’s a very, very good thing to actually have in the access group. It’s a tight group. Um, but we get things done, and that’s important. And every disability is represented. So it’s about all accessibility issues in the city. And the boundry has got bigger and as you know, I’m after becoming the secretary of the organization now and our body of work for the next six months is get to grips, right this is our boundary This is our cut offs. So that’s a body of work and I look forward to doing it and I’m sure you are too because it’s um, it’s a fantastic organization, um, and there’s good people at it. And again, you can see what we were speaking about already. People with disabilities actually doing best in class because you you know, everyone there . . . Is very committed. Everyone’s very committed. I know, I’m really happy to be a part of it. Even the elderly is represented, which I think is vital. So like it is very good and it’s best in class. Yeah, I don’t think, like Cork access group is probably better, the best access group in the country cause I’ve heard nothing about any other organization but our own. And as you say, the relationship with the councillors is good. So if you identify an issue they hear what you’re saying and they rectify the issue. Absolutely. Okay. And that’s really important. It’s hugely important. And like the changed issues there with parking and stuff around cork lately enough in the last two years and our input was taken in by the mercy hospital. You can see all the parking there and we were able to lead on that and that was great you know what I mean? Yes, absolutely. Johnny, we’re coming near to the end of our interview and I just want to ask you from your experience of working in the car industry, are there any particular tips we can give to employers to give them confidence to hire disability to employ disability ability? Ability. That’s what I’d say. People are so able. Yeah, you have to give them a break. You have to, um, government need to incentivise it more, but people are very . . .The ability of people with disability is unreal. Dedication. When a fella has a cold, he’ll ring in I’m sorry I can’t go to work, a fella with a disability will go in with his leg hanging off. We’re very resilient!! (laughing) So like that, and that alone and educate themselves on it. Okay, get the training, get the training and don’t be afraid to. Take them on and go . . . and ministers and TD’s. Do it because like there saying, the workforce has kind of got to a stretch and it’s at nearly zero employment. Well, take on people with disability and you know, And support us and you’ll get a great talent pool. Yeah, perfect. That’s great. And it’ll be less strain on the health service because if they’re occupied, and their mind is occupied . . child with a toothache Do you knwo what I mean? So less medication . . . Well it’s about being socially included isn’t it? And work as part of that social inclusion So it’s, you know, it’s so good for you. That’s brilliant, Johnny. Thank you so much and I’m delighted that we finally got to do this interview, and I’m really looking forward to another year of working with you. We will do it again in 6 months time again to give out to politicians. Alright so ( laughing). Brilliant. Thank you. Cheers, bye Please be advised that this recording does not constitute medical or legal advice.