 086 60 25,000 is our number for your text messages and on WhatsApp. Now 1960s Ireland was wasn't a time to have a disability because there was a special place for children who had a disability back then and that was behind the walls of an institution cut off from the rest of society. Well Martin Okton at just nine years of age was one of those children and along with his younger sister Barbara he was sent to an institution in Dublin far away from his Irish speaking home in Spiddle but Martin wouldn't be sidelined and with the help of some unexpected characters along the way he began to change the way that a generation of young people with a disability saw themselves. Now there's a book about Martin's life it's called Never Know Your Place and written by himself with the help of Joanna Marston who joins me now on the line. Joanna good afternoon to you. Good afternoon to you John nice to meet you. Likewise now tell us a little bit about well I suppose the the early years in particular and it was very very tough on him at a such young age to be taken from Irish speaking Spiddle and landed in an institution in Dublin. Absolutely I'd say it was a complete culture shock to him because the book opens with him going on this train journey where he and his sister Barbara they leave their lovely family home in Spiddle which is an Irish speaking community and he's had a pretty normal upbringing until that point and they go on the train to Dublin and it's a kind of long lonely journey where the whole world changes and they arrive and they go to this institution in Bal Doyle which is a very anonymous kind of place where people feel like they're kind of cut off from their families they're all medicalised the language is English obviously it's not Irish he has to adjust to this language it's all very routine orientated you know they get their hair cut they get their hair checked for nits they get the wound put on it they have to have their meals at certain times they have to go to confession there's a whole sense that you're part of a big machine a big sort of institutional machine and after this informality of living in a warm community and being kind of free there's this huge sense of shock for him you know and all because he had a disability. Yes yeah and I mean that's the really it's just so harsh isn't it it seems so harsh now but then I think we have to remind ourselves that it was a time when they didn't have services it's you know I mean I know let's be honest there's still an ongoing struggle for so many people to get the services they need but there were no services available so you know in order to get things like physiotherapy they couldn't get those in spiddles so it wasn't a clear choice it wasn't just send them off out of the way from the family's point of view it was that they thought they were doing the best for them and this is the way that society offered those services and obviously the effect was that they were so cut off and it was just such a painful experience. He thought hard for his freedom and eventually got to to move on from the institution but it wasn't just from within that he was fighting it was um his whole lifetime that he was fighting for people with disabilities for for them to have independence absolutely I think it's that feeling he had that he learned in the institution what it was like not to have that freedom about when you eat your dinner where you where you go how you live your life and I think that became this like really profound awareness of what freedom is and we know for most of us that you might think it's big things like you know going on holiday and stuff but actually a lot of the things are just the daily routines of having a cup of tea the way you like it and you know you're sitting in the space and all that that you enjoy being in and with people so he really understood what it meant to have freedom what freedom was on a day to day basis and he fought to get that in for himself and that was a really hard thing for him to get and when he got it he could have just chosen to go on with his own life to move to America which is what he really wanted to do but in the end he said no this is where I'm from these are the people I grew up alongside in the institution I want to go back and support them to leverage you know a different model of life where we have personal assistants which can support people who can support people in their own homes so that you know automatic institutionalization isn't something that people have to face anymore um yeah in a way PA's um you know many people take them for granted now but back when when Martin started speaking out about the value of PA's it was um it was groundbreaking it was and I think it there's he talks in the book about this first time where he tries to explain the concept and a few of them get PA's or that Martin starts actually paying for them himself and he kind of realizes this is my PA when he sees him in America but he's got to introduce the idea to Irish people who haven't seen this they've no idea and it seems like he's aware that they might think it's just mad money or you know but he's actually saying no this is actually cheaper to have them people supporting you in your home so that you can work so that you can be part of society um but it isn't something that people can get their head around so the first few years it's all about being seen so everybody in Dublin knew Martin and it wasn't just because he was campaigning it was because he made sure he was seen everywhere because if you've seen someone you know going around with a PA you kind of get your head around it we've all seen it now in our towns we're used to it but I think if you go back a lot of people have sort of said if you go back into your childhood if you're around in the sort of 70s or you know like you know people around even you know at the 60s in the 60s at the same time they wouldn't have had any sense that people with disabilities were visible in society they were just hidden away and and now they're visible and that's because Martin began that process of saying you know we're here we're not going to be locked up anymore we want to be seen and you know that's what the book is about really he helped to change a lot of people's perspectives of people with disabilities and also those with disabilities themselves and get them I suppose get them a look at what was possible and what could be achieved and what they deserved yeah I think that's true and you know what I've learned that I don't have a disability my many friends who do but I I think I learned a lot myself from this book and one of the first principles that applies regardless is that if you want to change the world around you the first thing you have to change is how you see yourself and that comes across in relation to the disabled people who grew up alongside that they first had to kind of think I do not belong in this place that I've been put cut off I can actually expect more um you know the idea of the book never know your places don't accept where society puts you question and then try to see yourself in a different light and then try and expand your worldview make it bigger and mix with other people so that kind of process of changing how we see ourselves applies to anybody who gets stuck in any kind of place in society and I think it's something that whether you have a disability or not you can learn from you know shake things up in order to change you know how you see yourself and then other people might see you differently but they're not going to see you differently if you don't see yourself differently you know the United States um we're way ahead of us in in in rights for people with the disabilities and and Martin looked at the state slot made a lot of friends over the years in the states and looked at various campaigns over there and then I suppose you know brought the ideas back here and said listen if it can work there it can work here absolutely I I often think it's amazing how it can be one person who brings an idea that comes from you know because now we kind of assume that ideas spread through technology and everything but at the time Martin actually went to the U.S. and he went to the U.S. looking like loads of young Irish lads at the time wanted to make a business have a liper himself he just answered the whole idea but while he was over there he got kind of stuck back into the disability world and he met these amazing American activists who were influenced themselves by the civil rights movement and they just they were very much want people who would do like kind of protests in public buildings they they had much they just said they were so far ahead of the way things were in Ireland and he imbibed all of that and he kind of had his own mind opened I think I mean at one point he actually describes going in to meet this activist called Fred Fay and Fred Fay is lying on a sort of a stretcher sort of set up and that's the way he has to live and Martin himself says like he he has his own prejudices he says this is so depressing you know he's like get me out of here and he whispers to his sort of PA I'll be you know don't hang around we're going to get out of here and then he ends up being so fascinated by a guy who actually has charisma and kind of energy for life despite these huge physical restrictions so his own prejudices are lost and he brings back this and Fred keeps saying to him what's your story ask people what their story is and what's your story Martin and I think Martin starts thinking well my story is that I'm allowed from Spiddle I'm raised in an institution and that is who I am and maybe we have a kind of responsibility to do something with the story because we don't choose our story it is who we are and I think there is that kind of process in the book of him saying well this is who I am so I go back and so and that's you know what what he makes it he wants to be a person of use and influence he kind of has that sense about him as a person you know and over the course of his lifetime I think achieved a lot more than he ever realized that even at the time I think he just kind of accumulated and became who he was and yeah I mean it's obvious he achieved so much because I've had some lovely comments from young activists who kind of are realizing that things that they took for granted this is where it came from and a few of them maybe that kind of the ones in the late 20s would have known Martin but the younger ones don't know him but they're actually saying starting to connect with this sense of this is where things changed in Ireland and I mean yeah there's a lot more than needs to be done but it is that start of a movement that's actually quite important to people having a sense of identity but I mean a price was paid for it and I think it's one of the interesting things in the book is that there is a sense in which Martin maybe sacrificed some of his own personal kind of his own his own personal wishes in life he doesn't say it a lot but he lived his life very publicly you know he focused on advocacy and I think he would have liked to have done other things in life he would have liked to have gone to America and you know there are things that get given up and he doesn't go on and on about them but they are there in the book I think you know isn't that the way with all the the biggest campaign is that they give over so much of their their life to the cause as it was and yeah you mentioned there about the United States he died in 2016 but a matter of months before that went on on something of a pilgrimage to the United States he did yeah he went on the Selma to Montgomery Trail and I think that was about him kind of trying to connect with the civil rights like he would movement he really took a lot of inspiration from not only from disabled leaders in America but also from the black kind of civil rights movement that was very he he considered that to be very much a kind of something that came from the ground up in in life he was inspired by a lot of things that was one of them you know Celtic football club was another but he had these places that he kind of went to for inspiration and I think towards the end of his life there he was kind of looking for that going back to the world so so to speak to pay tribute to other activists because he knew he'd given his life to that and I suppose he was probably hoping that he might get another few years and this would maybe give him the inspiration to kind of go back for another round because he was worried about the next generation coming up behind behind him and that they wouldn't they weren't getting enough hours of the PA service so you know he wasn't like retiring and saying didn't I do a great job he was thinking about the future um you mentioned Celtic there tell us about the connection with Celtic because it was it's while he was in an institution in Dublin that I suppose that that really made a lot of people set up and take note because it was a trip over to Celtic Park and he got Celtic Park and he got to meet the the captain then Captain Billy McNeill who was really good to him he was Billy McNeill was amazing and I found it quite interesting hearing about the story even though I'm not like a big football person I really I really have a soft spot for Celtic now having heard how amazing they were and it actually started before he went over there they came to Ireland on Patrick's Day and they were on their way to visit de Valera in the Phoenix Park um this was after the whole European Cup the Lisbon Lions team and the whole team came over and somehow somebody must have arranged for them to stop in the hospital and they stopped and they visited the the kids in the hospital and that was like Martin describes it as like a light that was over these these kind of big guys who would have been like superheroes at the time and to you know to this day to some extent and it made them feel as if they hadn't been forgotten because if these guys knew they existed and so for Martin it's a bit of a light bold moment and it changes how he sees himself and then he kind of tries to build a rapport and actually Billy McNeill takes a shine to him and he buys him his first power wheelchair and he invites him over to Celtic Park and he gives them pieces of advice that are kind of funny you know because Billy McNeill was a big guy and he had like a lot of presence and Martin says he was very when he came into a room he kind of had a quiet way of controlling the room and Martin is known for that I was known for that as well and Billy McNeill said to him you got to remember like when there's one moment in the book where he goes he's about to bring Martin into the locker room in Celtic Park and he says remember these guys are more nervous of you than you are of them and it's that awkwardness around disability and I think Martin thinks hold on this could be used to my advantage I'm not in an evil way in a in a cheeky way but in it in the interest of good and I think we have to laugh at that and sort of say yeah he took advantage of awkwardness to make things better and you know and that Celtic visit was just you know it's very symbolic occasion in its life and I suppose it was a community in Bal Doyle as well there would have been a lot of Celtic supporters and like the one of the nice characters in the book there's a couple of ordinary people like the nuns can be quite harsh obviously but there's like a hospital porter who's a big Celtic supporter and these are the people who actually bring real sort of human warmth into Martin's life and the life of the children and Celtic is what unites them it's this love of football it's this sense that even if you come from a really poor background that you can actually change things if you kind of have a power of community so that's another big influence on him you know well his love of Celtic never left him and that story about getting to go to Celtic Park and meet Billy McNeill and the rest of the team in 1973 is detailed in the book as are a number of other great stories about Martin and his life and his campaigning it's called never know your place memoir of a rule breaker uh Joanna Marston thank you very much it's been a pleasure thank you for having me get with the best Virgin Media Ireland's best broad