Welcome to By Us, With Us!

Hi everyone!

 

As you can see we have created a ‘By Us, With Us’ blog. The purpose of the blog is to give people a space to reflect on the progress of the Independent Living Movement and to commemorate those who have passed before us. It will also offer regular updates of the planning process of an event we are hoping to hold in September around the theme of ‘Our Lives In Our Hands’. It’s hoped this event will tie in with the Strasbourg Freedom Drive.

‘By Us With Us’ is a group led by activists with disabilities. It is not tied to any one organisation and its agenda and purpose has been defined by the group, although it is supported by the Center for Independent Living, who will help us in reaching our goals. At present our purpose is to organise this commemorative event, as well as to try and bring back the spirit of the original Independent Living Movement.

Contributions to the blog are very welcome. This can be written reflections,  videos, photographs – anything about the last twenty-five years that you want to share. Memories of those who have left us, past events, and where you want the movement to go in the future.

Ideally this should be a positive space, a space of celebration. We are all too aware of the many struggles facing us at the moment, and the Movement itself is not as strong as it was, but it is hoped that by reflecting on the positives that many activists have achieved that we can unite and look to the future.

If you would like to contribute, please email byuswithus@gmail.com. Ideas might include:

 

·         Photos/video footage of the early days, the establishment of CIL

·         Photos/videos/write-ups of the Strasbourg Freedom Drive

·         Memories of any protests that Martin organised

·         Why the philosophy of Independent Living is so important to you

·         Tributes for activists/Leaders who have passed away.

Get your thinking caps on, and get emailing!

Only One Month To Go!

Hello everybody!

Apologies for the radio silence, but rest assured that behind the scenes the By Us With Us team we have been working tirelessly to ensure that our first event is a success!

We hope that by now you have received your invite to our event, ‘In Their Names, In Our Time.’ If you have not received an invite and you are interested in attending, do let us know by emailing byuswithus@gmail.com. If you have received our invite, please RSVP to byuswithus@gmail.com before Friday 11 August to secure a place.

Our blog, byuswithus.wordpress.com is still open for contributions. We are looking for reflections of the past, but we would also welcome any piece that details your fears and hopes for the future.

I wish to apologise for being so heavy-handed with the Facebook page. It is now clear that this event, which initially was solely a memorial event, must now involve us standing together and protecting the future of the Independent Living Movement. Undoubtedly, things are now different with the absence of the many activists we have lost over the years, Martin Naughton and Donal Toolan among many others, but surely we have a responsibility to ensure that their good work has not been in vain?

Once our agenda has been finalised we will email it to all of you, and if you have any comments or suggestions please email them to us.

This will be a landmark event, one that will determine the future of the Independent Living Movement. It will be a day of entertainment, reflection and looking to the future. And it’s something that I think we should all be part of.

 

After all, we are the future of the Movement. We must be fearless and strive to make our predecessors proud.

More to come in the weeks ahead, so watch this space…

From Clare to Here – A Reflection, by Martin Tobin

From Clare to here

 

 

Who am I?

My name is Martin Tobin I am from Newmarket-on-Fergus near Shannon, Clare. I was educated at St. Anne’s special school in Ennis, Clare where I spent fourteen years of my youth.  I think it was in 1989 that a group came down from Dublin to Bunratty to get a CPI sports group going in Clare. For a while after that, during the summer I used to do sports with CPI (Cerebral Palsy Ireland) in Ennis. We used to meet in the Fair Green in the town on a Saturday morning. We trained for big events in the year – one in Tullamore Offaly, and the other in UCC in Cork city which was held in August: as far as I remember these were the national finals and Tullamore was the semi-finals a.

The sports finished up sometime around 1992/3 and the following year we went on our first holiday to Marina clinic/school, Bray Wicklow where we would stay for ten days. I think this finished up in 1996 and the following year we went to Trabolgan in west Cork.

When I left school in 1999 I started working in the local Super Valu part time which I got through EmployAbility. This left me free to attend a rehabilitation course in the Dulick centre in Ennis two days a week. In the Dulick Centre, I participated in horticulture, arts and crafts, independent living skills and Information Technology. For most people it would a four year course, but because I was only doing two days a week, I had seven years to do.

Although that seems like a awful long time I enjoyed it! As they say “time flies when you’re having fun.” It was here that I got my flair for Self Advocacy when I was on the first ever committee in 2003. By the time my time was up in 2006, I was typing up the menus for the In-House Gallery restaurant.

When it was my time to leave in 2006, I started in sheltered employment in creative ceramics also in Ennis (while still having my part time job) where we participated in making crockery. It was a nice place to work, but there was no advocacy group despite my many attempts to start one! We finally got one going in 2013. Things were quite slow in this group until we move to the Dulick in early 2015. After a while in the Dulick, we joined up with existing sheltered workers Self Advocacy group. Our only victory was when they tried to cut out the in-house dinners in June 2016.

Path to CLF (Clare Leader Forum)

My entry on the independent living scene happened quite by accident, as vice chairman of the Self Advocacy Group in the Dulick centre in Ennis I longed for better communications between the different service providers in the region. When I heard Clare Leader Forum were trying to create a peer support group with people from across the services providers it suited me to the ground.

My first engagement with Clare Leader Forum was a session of committee training in the CLDC offices in Ennis where, as the title suggests, I learned the basics of committee skills and how to run a committee correctly. At these meetings that everyone agreed that some form of an advocacy platform was needed, but nobody knew where to start.

By the time the classes were nearing completion, my confidence was growing. Therefore, I put a proposal to the group which I entitled “mission possible” which led out several steps that I felt could carried out and at least needed to be looked at. It highlighted seven major issues which were transport, jobs, funding, social life, accessibly & independent living, new directions and parent/guardian’s view.

Transport at the time was becoming a major concern in country Clare as the DPOC transport service was to be suspended if it was not suspended already My memory isn’t too clear on that. Funding of any kind was hard to get. I also experience this difficulty in securing funding in my drama group.

Social life, as well as employment, can be hard to come by for people with disabilities in rural areas. New Directions, for those of us that don’t know, is a program brought in by the powers that be in recent years as a new way of running day centres. It seems to meet the approval of parents and guardians because I think that in most cases parents and siblings and not being told enough news about what is going on in the lives of those with disabilities.

There was also the suggestion that we have what I called a “Social Inclusion Fair”, which could include up to twenty two different groups including as many service providers as we could encourage to come along. This initiative would eventually become “Achieving the Future we Want” which was held on 2nd December 2016, where I had the honour of speaking on the same stage as Ann Marie Flanagan and the late Donal Toolan.  We also held a transport conference in Clare called “Transport for All” on 26th May 2017 which seems to have been very successful.

How things stand

The current state of affairs is very disappointing for the people that have been advocating since the UNCRPD was signed ten years ago. However for a John Doe like me who never ever heard of the UNCRPD until joining the Clare Leader Forum, it seems all right on the one hand because you don’t know much else, until you hear about the UNCRPD and you think what is that I have to get to know about it! But it’s so hard to get information on it that is easy to read and understand and what makes it worse is that it’s difficult to inform people about its benefits when there’s so little info about it out there.

Worse still, it seems to me (from the little I know these things) that there is more benefits it in for the intellectually disabled that the physically disabled, despite the fact that it is mainly the physically and sincerely disabled that out there protesting about it. For example, we know that it has been illegal since 1993 for someone with an intellectual disability to get married, but when you say that to most people they say WHAT! It is hard to believe so what we actually need is an easy to read booklet on what the UNCRPD really means, and we should find a way of informing parents and guardians of its importance also.

The Future

On that note there is one point I really think needs to be made. Below is a list of just some of the Leaders we intend remembering on 23rd September next.

Martin Naughton   Galway

Donal Toolan                   Ballyhaunus, Mayo

Joe T McCann                 Donegal

Florence McDougal          Donegal

Michel Corbett                 Newport, Mayo

Tom King               Tulla, Clare

Bridge Cox            Corofin, Clare

Dermot Walsh                 Dublin

Patricia Kelly                   Clare

 

 

 

What really stands out to me if I may say is that most on this list are from the heart of rural Ireland and not from inner city Dublin so the best way to remember them is to spread the word about the UNCRPD far and wide.

I believe that after the commemorative event that is due to take place in September, I think we need to organise three or four regional events to spread the word about what we are trying to achieve. Here are some observations on what issues could be look at in the future.

 

  • There are not very many family members (of people with disabilities) that understand the We need a booklet explaining UNCRPD and we need this as soon as possible.

 

  • In recent times the Irish  government has launched two major interactive for rebuilding our country “Realising our Rural Potential” and “Creative Ireland 2017-2022” . I feel that we should make sure that both of these are accessible and inclusive for people with disabilities

 

  • On the issue of personal assistants I think we should try and converse with what body advocates for PAs to see if we can come with a solution to this issue

 

  • The school holidays seem to be very hard on parents of kids with intellectual disabilities practically around the age twelve or thirteen (around the time they leave primary school for secondary school) and again around the age of seventeen or eighteen when they leave secondary school for either a job or a rehabilitation course. Perhaps we could look at organizing some kind of activity at these ages, sports day, day trips or maybe some kind of a break.
  • I think we also need to get the business community on board we need to advocate advantages of working with the disabled community to create a fully accessible inclusive society, in the catering, retail and tourism sectors. By telling them that accessibility and inclusion are good for business, i.e. “we will spend money as long as we can access your premises”!

 

  • I believe there is a need to separate direct payments from the UNCRPD if there is a difference (which I think there is) or package them together if they are one and the same.

 

 

We Need You to Help Us forward the Independent Living Movement!

Hello everybody! Sarah Fitzgerald here. I apologise that I haven’t blogged here in a really long time – I’ve been slacking off! But now it’s time to pull up my socks and play my part in forwarding the Independent Living Movement.

Independent Living Movement? you may well be thinking. What is that? Does it even exist any more?

Of course it does, but any human rights movement is only as strong and as active as the people within it.

As you may be aware, this group ‘By Us, With Us’ are planning a huge Dublin-based event for September with a view to celebrating the successes of Leaders/activists who have passed away before us as well as emphasising the importance of keeping the philosophy of Independent Living alive. Even though the event will be Dublin-based, it’s so important that we have representatives from a wide geographical spread so that everyone across the country has the opportunity to be involved.

Martin Naughton and Donal Toolan have left huge gaps in the Independent Living Movement. You can’t deny that disability activism has quietened down over the last year. Sure, many of us (myself included) are constantly trying to get a message of equality and inclusion out there, but we are working as individuals.

‘By Us With Us’ lends us the opportunity to become something more, to work as a group and have our voices become more powerful. Instead of trying to change things on our own, this group is there to remind us that there is still a need – and always will be a need – for an Independent Living Movement.

‘By Us With Us’ first met in October last year with a view to holding an event to celebrate the lives of the Leaders we have lost since the beginning of the Independent Living Movement. The sad loss of so many Leaders, not just Donal and Martin but many others all over the country throughout the years, shows us that we cannot be reliant on a single person or a small group of people to keep the Independent Living Philosophy alive.

And don’t get me wrong – I know how difficult it can be to find the time to get involved in things. There’s transport issues, health issues, PA hours. I’m not dismissing these as trivial – they’re certainly not. What I am asking you to do is to promote By Us With Us in your Leader Forums, your day centres and your local community.

Just to clarify, ‘By Us With Us’ is an independent activist group working with the administrative support of CIL Carmichael House. We represent ourselves and do not follow the agenda of any organisation. The support of CIL is on our terms.

I am writing to request that you take on the responsibility of promoting ‘By Us With Us’ and our upcoming event in your local community. In order for the Independent Living Movement to survive, we will need fresh new voices as well as the voices of experience. I, Sarah Fitzgerald will be on hand seven days a week to help you coordinate meetings and prepare material. I am also available on email and phone should you need guidance, so don’t think that you will be dumped with a workload you can’t handle!

Look inside your local disability community and identify potential key activists who can join us. Then please get in touch with me at byuswithus@gmail.com. If this could be carried out by 7th July at the latest that will give us plenty of time to get organised for September.

No-one can ever replace Martin, Donal or any other activist that has now passed away. But wouldn’t we be incredibly silly to let a movement fade because of it? Now, in an Ireland where disability rights are regressing, we need to pull together and invite this government and our peers to stand ‘By Us With Us’.

This September we will be holding an event that will put Independent Living back into the public consciousness. I’d love everyone to be a part of that.

Please contact me ASAP.

Sarah Fitzgerald

Memories of Martin

Martin Naughton, widely considered to be one of the most influential disability activists in Ireland over the last fifty years, passed away age sixty-two on 13 October 2016. Last March on his sixty-third birthday, those who knew and loved him posted some beautiful tributes to Martin on Facebook. These tributes illustrate the extraordinary person Martin was and how sadly he was missed.

 

Eileen Daly:

 

I met Martin for the first time in 1994, a day that will be etched in my memory always. I had a dream, I wanted to go to university but how? I felt both terror and awe as I talked to him. He told me anything was possible. In August 1994, my journey to freedom and adulthood begun. I moved to UCD in October and I’ve never looked back. During those first few years, I was busy enjoying student life and I slowly began to grow up. Martin was always in the background, observing. When I graduated from UCD in 1997 Martin gave me my first “project” supporting and coaching young people with disabilities. I had great fun, I was hooked! As the years passed, Martin became my mentor, my equal and my friend. I always knew he was at the other end of the phone. He helped me out of “many holes” always in a dignified and sensitive manner. Martin, you gave me my key to freedom and this allowed me to become the person I am today! Thank you from the bottom of my heart I miss you more than I ever thought I would. We will keep fighting the fight and we will have fun doing it! Happy Birthday xxx

 

Audrey Brodigan:

I first met Martin in the CIL Bolton Street office. I remember about five staff trying to get into the one toilet to hide, and two running out the door for coffee break. He zooms through the door shouting orders at Joe T and Fiachra, such an amazing presence. The first words I ever spoke to him were. “Don’t you ever shout at me like you’ve just done to everyone”.

 

Sarah Campbell:

I first met Martin in Smithfield. Scariest job interview ever, before or since.

Brian Clancy:

I first met Martin in the CIL offices on Bolton Street. He was always shouting at me but I loved him­

 

Sarah Fitzgerald:

I first met Martin back in 2005 when I was looking for a summer job. My PA had arranged an interview with this ‘great man’ Martin Naughton, who was setting up something called a Leader Forum. Now you have to understand that I knew everything about everything, I was twenty-one and studying at Trinity, one of the most prestigious colleges in the world. He absolutely needed me! Oh I can laugh at my arrogance now… I went to the interview in Smithfield where I met the man himself. For some reason the first thing I noticed about him were his eyes, they always twinkled and smiled. He wanted me to coordinate the setting up of the Dublin Leader Forum, I didn’t have a clue what he was on about but told him that I was his woman and so I had a job. And with Susan O’ Brien and Sarah Campbell secretly helping me (transferring Martin’s vision into easy-to-follow instructions) we did just that. Martin was only human like the rest of us but what I loved about him was his daring spirit and his clear vision for achieving what he might consider the true philosophy of Independent Living. Another thing I loved about Martin was that he took the time to get to know you. I’ll never forget the day in 2011 that Offaly CIL welcomed *the* Judy Heumann (one of the original US activists) to the Centre, and Martin introduced me to Judy as a hardworking, passionate activist. By then he was a celebrity in my eyes so the fact he even knew my name was exciting to me!! But he was introducing me to Judy Heumann! I felt like a teenager meeting One Direction! It was Martin that made me so interested in the history of the movement, where we’ve come from. But Martin himself was always looking to the future and so we have an obligation to ensure that we keep his spirit and passion alive!

 

Nuala Ni Chonchrá:

I first met Martin in DFI when I was working on the mainstreaming for my project and Martin was my mentor. I remember so well that first meeting in the Board room. He kept saying ‘do I know you from somewhere?’ – and as he has relatives who are Crowes he reckoned it could be that. SOOOO many adventures after that and so many projects. Happy Birthday Martin – we all miss you.

Eoin Healy:

Just before I met Martin in 1995 for the first time, Sandra O Connor told me if I wanted some weekend work to make a few bob, to call around to Martin’s. I was told all I would have to do is help out a guy in a wheelchair. So I went around and introduced myself. Before long I found myself losing whatever I had made on a game of cards (21) to (if memory serves me right) Hubert McCormack, Joe T Mooney, Tony Maloney and someone else I can’t remember right now. The other thing I will never forget was that same weekend, I got to cook my first chicken…. and pretty much every Sunday after that with a game of 21 after dinner.

 

Annie Byrne:

I met Martin in 2012. He gave me hope that I would be living independently, and since then my relationship with him changed. I saw Martin as the godfather of the disability community. I looked up to him in so many ways, and when I am having bad days in life, I know Martin and my brother are helping me get through it.

Shelly Gaynor:

I met Martin in 1997 when I had starting using a Personal Assistant. He went on to become a great mentor and amazing friend someone who was always in my comer. We did many different protests together over the years and someone who I miss very much.

Geraldine Graydon:

I met Martin many many years ago during a protest outside the Dail where he chained himself to the railings because his group could not get a meeting with the then Minister of Transport Mary O’Rourke to discuss their issues regarding transport.

 

Hubert McCormack:

“Integration in our Nation”. A slogan on a float for the St Patrick’s Day Parade in 1981 – the Year of the Disabled – One of the first political projects which I was involved with Martin Naughton on. Of course, it was his idea. We were both living in Baldoyle at the time and little did I know that as I was being physically lifted by “Big Bren” on to the back of that float (a 40ft artic) on a cold wet day in my scout uniform, that this would be just one of many great projects for the next 35 years. Nothing will ever replace the fun (and sometimes, not so fun) times we had together. Great memories and happy times.

RIP my friend. Will never forget you.

Mary Llewellyn:

I met Martin in 1974, in St Mary’s Baldoyle. Day one in my new job and this place had a swimming pool. Soon as I finished my first shift, off I went for a dip and before I even put a toe in the water, this guy in a wheelchair came up to me and said “Can you swim? Right you’re down for a sponsored 100 length swim on Sunday, you’ll be in lane 1 by the wall” I’ve been best friends with Martin ever since. As Morgan Freeman said in Shawshank Redemption “Truth be told, I just miss my friend”

Sinead Cronin McCabe:

I met Martin in June 1994. I had an almost 2 week lead in of being told about Martin by Noirín Halligan, Rosaleen Doherty, Frederick, Julie, Grainne, Dermot, Michael, Joe T and many more Needless to say I was terrified, but in the gate lodge of Carmichael House there was nowhere to hide:D I was near the window when I saw the famed Blue Van pull up across the road, a few minutes later I heard what I would later recognise as Martins knock (cluck cluck)

He was in good humour that day. I was introduced by Frederick I think and Martin asked how I was getting on. I can’t remember what I said but I know I was enthusiastic (I was already quite happily and voluntarily working many hours beyond my CE hours of 20) and I showed him the work I had been doing which was the typing up of the first ‘Leader Manual’ which Julie had been writing in conjunction with all the Leaders. He told me a few stories about CIL’s history and its people including the one about how he fell out of a plane. I think my eyes betrayed that I didn’t quite believe that one…!

There was a mutual liking and respect born that day and a few days later I found myself outside the Dáil overnight, firmly entrenched in CIL it’s philosophy and the CIL family less than 3 weeks in the job.

 

 

Rosaleen McDonagh:

It was 1980-something! My Confirmation. The nuns in Baldoyle were harassing my parents for money they didn’t have. It was awful embarrassing. Martin ran a sports club. They did fundraising. He organised money for new clothes and shoes for myself and my sister Mary. He knew things were difficult for Travellers. We didn’t have money for Confirmation. Also, when I was 15 Martin, who ran the swimming pool, gave me a job as his secretary. The person who normally held that position was on holiday. It was fantastic. Other kids went home during the holidays. This was not always possible for some of the children – me being one of them. Also, other children were good at sports or they went to secondary school outside the hospital, which was a rare privilege in those days. Anyway, I was secretary for Martin. This gave me a badly needed boost of pride and self-esteem. During that time Martin raised my consciousness, not just about disability issues but about women and believe it or not, yes, this man also was talking about Traveller rights.

My other memory – after I left Baldoyle, I lived in a site for 2 years in Ballymun. We had no water, no refuse collection, nothing. My wheelchair, I didn’t even have one. Day after day, for about 2 years I sat in my parents’ trailer/caravan. Then I was sent to a nursing home in Clontarf. It was the most lonely time in my life. Because secondary school was off limits to me and I’m still not sure why, at 19 or 20 I had no qualifications for anything. They sent me to a day centre in the IWA and CRC. At the time, I wanted so much more. It terrified me to think that at such a young age, this was all I had and I was supposed to be grateful. As luck would have it, in the day centre I asked somebody to write a letter for me – I had no address and the person that was writing could not make out Martin’s surname because of my speech. The letter was written, put in an envelope and the woman in the IWA promised me she’d find out who this Martin man was. Weeks went by. Months went by. Then one day, as I got out of the ‘special bus’ at the IWA, the driver shouting at me, there he was – Martin. All I remember is him saying ‘do you want to get a bit of breakfast? I don’t think the day centre will miss you today.’

And that was the start of my independence. He got me into college, into suitable accommodation, my first power chair which my family didn’t want me to have because in those days a Traveller woman was not entitled to any freedom. Often, I wonder what way my life would be if I hadn’t met Martin. No doubt in my mind I wouldn’t have lived as long of a life if he had not given the gift of dreaming, ambition and freedom.

 

Rosaleen Bradley:

I first met Martin in the summer of 1993 after taking a job as a PA with Joe T Mooney in Donegal. During the interview held in Joe’s mushroom houses, he’d asked me if I’d any experience driving to Dublin, where I assured him I had (had actually only ever been in Dublin once on a bus to a Tina Turner concert and had a licence for all of 2 weeks) but felt the chances of being asked to actually drive him to Dublin were slight so what the hell. About 10 days later Joe tells me we’re off to Dublin for a weekend’s training (nightmare) and staying with Martin.

We made it there and I waved loads at the many people blowing horns at me in the hope Joe thought I knew them. We finally got to Martins, one of us as glad as the other I’d say, me telling myse

lf I’d never tell a lie again and find myself another job next week given that it wasn’t quite what I was expecting. Within a few hours in Martin’s company though I was, let’s say, hooked!

I remember when I got talking to him myself, admitting my lie and intention to go again. He just laughed and said “you’re just what Joe needs and you’re going nowhere “. How right he was…
Twenty-four years, later having spent many of them early years with Martin in Dublin (with too many tales to tell), and since 1999 back here in the Donegal CIL, he remains in my heart guiding me over the years as he always has done. I can only hope that I meant to him half of what he meant to me. I’ll miss you forever Martin xxxx

 

John McDonald:

I met first met Martin in the Summer of 1969 or 1970 that was when I first went to Baldoyle. To me he was a leader and someone I looked up to over those years. I would have been regularly in trouble with the nuns and very frequently summoned to the convent to be reprimanded for some small thing or two. Martin would always jump to my rescue and smooth things over. Martin use to always organise regular trips to soccer matches and I remember one particular match Newcastle United were playing Dalymount Park. It was getting close to the end of the game and we decided to go ahead of the crowd. The chap that was helping me decided to bring me up the steps backwards on his own. Unfortunately the plastic cover around one of the handles of my chair came away and landed down the three steps damaging my ankle. I was taken into the United dressing room where the trainer strapped up the ankle. I got to meet the whole team getting lots of momentos, and I even met my hero, Malcolm McDonald.

After leaving Baldoyle I lost touch with Martin and the many friends then. Then just over a year ago I met Martin through AT (Áiseanna Tacaíochta) down in Waterford where I now live. On our last meeting, around a month before he passed away. I spoke with him by phone again when he informed me he had secured five hours for me from local HSE.  R.I.P.

 

Lorraine Cooke:

Happy birthday Martin! Some of you may have read the blog post that I wrote for By Us With Us. The first time that I met Martin I think was in the GDIL meeting room when it was located in Green Street.

The stories of people who knew Martin longer than me show how passionate he was for people with disabilities of any nature to be included. I learned this as for the first few times that we met I didn’t know what to say to him as without his vision of people with disabilities having a personal assistant service, I wouldn’t be where I am today.

The disability protest that I did in 2015 gave me the opportunity to speak to Martin for the longest period that we ever got to speak. This was a clear memory for us both as on the last 2 occasions that we met at events in Blanchardstown, his response when routine formalities were happening was that he remembered me from that encounter.

 

 

Eugene Callan:

I absolutely cannot claim to have been at the beginning of the independent living movement. I met Martin in the late 1980s. Martin was organising MDI member holidays. Later we talked about a different model of living, the philosophy of independent living. I was living in Cheshire home for about 8 years at that time I witnessed first-hand how Department of Health was abjectly against the independent living model when we met them.

However, Martin Naughton, unwilling to let such inward looking bureaucrats prevent his mission, stepped right outside the Irish government and to bureaucrats and secured funding from the EU. Following on from this I was part of the working group overseeing Operation Get Out, the groundbreaking action to enable a pioneering group of people with disability to leave institutional care and become Leaders. However, it is a matter of regret that I didn’t have the independent spirit, or perhaps courage to move out of that institution myself, only following sometime later.

As many others will have commented and remembered, Martin liked lighting a flame in people and then watching them grow. He did so with me in spades. I spent 10 enjoyable years as a director and then chairman of CIL Carmichael House, during which I organised a resistance group to the cuts in PA funding during the financial crash. Thank you Martin.

 

 

Audrey Brodigan:

Many moons ago, myself, Martin, Ursula, Jimmy, Florence and PA’S booked two fabulous holiday homes in Spiddal and off we went for a week’s break. Flo was the Mammy, Ursula was the crazy one, I was the bold one and the men were just afraid and did what they were told. Ursula was out early every day in her bikini catching every ray of sun, Flo was up early cleaning every morning (she actually brought her own cleaning supplies with her). My room was upstairs so she couldn’t check it (it was bad) I just lived out of my bag, clothes everywhere and never made my bed, but she wouldn’t rest till she saw it and got Jimmy to go up and take photos think I was grounded that day.

Us girls went for a drive one day and Ursula made me drive down this really narrow half a road, myself and Flo terrified because there was nowhere to turn back. We just happened to be in the bloody sea and the tide started coming in which Ursula (no fear) thought was hilarious.

We checked out every pub and restaurant for miles around, myself and Ursula usually being the two drunkards who left everyone waiting in vans while we finished our dancing. Martin was outnumbered by the women and was too scared to give out. We laughed all week, stayed up half the night in front of a big fire playing cards and talking rubbish. One of my best holidays!

 

Aisling McCann:

I remember one time Joe, Hubert and Flo were on the phone talking about going to one of Martin ‘s meetings. It was to be held in Carmichael House on a Saturday morning at 10 30 . Of course this wasn’t a one of meeting. They had been the previous Saturday and during the week. The trio had decided not to go. You’d think Martin had heard their conversation as he rang the night before just to encourage or make sure they were going. All I heard was Joe saying ah I’ll be there Martin. When he went Flo and Hubert were there too. ! Martin was very kind to me down the years and was only a phone call away when Joe T died. Happy Birthday Martin.

 

Mary-Treasa Cahill-Kennedy:

I met Martin for the first time in 1991/2, At a conference can’t remember now exactly what one. I was at UCD at the time. I was involved as a student representative building awareness regarding access for student with disability etc. Martin asked me if I might be intrested in part time work on oporation get out which I was I was interviewed in a portocabin at side of carmichel house and hired Martin actually gave me my first job in the area. He belived in me and encouraged me. He thought me allot and to think of new ways of seeing things and finding solutions. I have continued with advocacy human rights work
Working in many diffrent areas with cross section of community groups and orgonisatins in society in the area of gender advocacy human rights community development.

It was an honnor to work with Martin and the team on Operation Get Out supporting and coaching young people with disabilities to live independently in their community place of choice; many had lived in communal settings up until this project. They were starting something new they managed and trained their own PAs. A lot of learning trailblazing the way and testing and sharing came out of it. Martin with others was always there supporting encouraging along the way.
Martin reminded us all many times to use our voice to bring about change and to support one another in what ever way we can. We may not always agree but that solidarity is important my friend. I always answered his call to come and show support for many a campaign and encouraged others too. He was always generous with his time when we bumped in to each other over the years where ever it was and so looked forward to those chats on the sidelines of events when he did get a moment.
Martin, you gave me confidence in myself that I was creative visionary and knew my way forward and could bring others along too on the journey to self-discovery. You introduced me to so many new supportive colleges out there. You gave me freedom within the role to carry out my duties in my own style in a supportive way. This gave a huge sense of freedom in that this allowed me to develop my skills, talents and become the person I am today! Thank you. We will keep fighting the fight all of us together men women children family friends all together. For a brighter better future which is built on respect inclusion choice and equality.

 

John Doyle:

I first meet Martin Naughton when he arrived in Baldoyle Hospital with Barbara. I was given the task of teaching him to speak English. The first phrase he spoke was Radio Nova Station of the Stars. Martin loved listening to his radio a love he kept all his life. Happy birthday Mo Chara

‘The Accidental Host’ by Peter Moore

peter moore
Peter Moore

One Sunday morning, away back in the mists of time when it seemed most of the pa’s in Dublin were from Serbia. I was in my living room minding my own business.  I was probably thinking about going to my local in a couple of hours’ time when I got a phone call from the knock, a nick name some of his Baldoyle friends had for Martin.  Roasting a pig on a spit in the open air is a Serbian tradition mainly around Christmas time or New Years.  There was much talk of doing it in Ireland in honour of our Serbian pas.  Martin bit the bullet and decided to have it in his pocket-sized garden.  The pig was bought, but the neighbours in Baldoyle immediately objected to the smoke.  So the phone call was made to me. As everyone knows when the Knock knocked doors opened, and so it was I became the accidental host to a barbeque with a difference. I had a lot of firewood in my shed , most of which was commandeered for the fire.   James Brosnan was the Leader I knew living close enough to me, so I gave James a call and he came along.

 

peter moore rossting pig on spit
Roasting the pig on the spit

 

The cooking of the pig took longer than I thought and so it was a ritual in itself.  I remember Natasha Spremo picking flowers from my garden and putting them in her hair.  It wasn’t meant to be  a hippy convention. 

It would have been around 2.30 when I saw my neighbour Ollie Hand pass my gate on his way home from the pub.  Within a few minutes the bould Ollie was back around with a small crate of about ten bottles of Heineken which he left on the grass for us.  People couldn’t believe it.  Everyone wanted him to stay, but I knew his tank was full and Alice probably had his dinner on the table. 

Potatoes where wrapped in tin foil and thrown on the fire to roast.  When the meat was cooked it tasted good but somewhat greasy. 

It ended perhaps around 6.30, and like most things that happen unexpectedly it was most enjoyable.  The respectable people went home and after about an hour I went to the pub.

My ‘Brief Encounter’ with Martin Naughton, by Alannah Murray

Alannah Murray
Alannah Murray

My name is Alannah Murray, and I met Martin almost to this day (2 April 2017) a year ago.

While I’ve been disabled since I was 6 by an auto immune disease not uncommon to Lupus, I had no contact with the disabled community really. I went to a mainstream school, had a regular upbringing with minimal contact with the medical model of living that others have been faced with. I’ve been in and out of hospital for fifteen years or so but that was the main extent of it.

 

I decided to study film in college, mainly because I didn’t know what else to do and because I thought it would be easy (spoiler alert: it isn’t) and because I feel like film is a very powerful medium when it comes to telling stories and putting them out there to the wider community. They had great supports where I went to college, and any apprehension on whether I’d excel despite my disability were erased. I had an incredibly helpful PA, which wouldn’t have been afforded to me were it not the work of predecessors.

 

When I got to my second year of college, I had a documentary module where I had to make a documentary on a topic of my choice. Not one to let an excuse to use the hand I was dealt to my advantage, I pitched a documentary about how disability is represented in the media. The lecturer thought it was a great idea, so off I went to research. I looked at the usual media portrayals, and then I looked at an article about Inside I’m Dancing, and who it was based on: Martin Naughton. So I googled around, found an email address, and sent it off asking him for an interview for the doc.  While I didn’t get the interview I was after, what I did get was an invitation to a gathering in Swords to watch a discussion about the UNCRPD (a collection of letters I had no clue about until that day).

 

What I got in Swords was an introduction, a breakneck one, into a world I knew nothing about but that I felt like an immediate part of. I got to watch Martin talk about disabled rights with such power, such conviction, I was happy to jump head first into the world of activism. Using the information I’d gathered that night and using the contacts I’d made, I went ahead with the documentary.

 

I was lucky enough to have country wide success with it. People engaged with the stories, and I had the joy of seeing people like myself on screen for the first time in a positive light. Where I wasn’t a disability, where I wasn’t a burden; where I was a film maker, and transcendent of my disability.

 

The week before our first festival premiere, I got the chance to go to the Disability Summer School in Galway to watch people from all over the world talk about their experiences. I had the chance to interview Judith Heumann, and once again listen to Martin Naughton talk so passionately about a topic he held so dear.

 

I’m forever grateful for the opportunities afforded to me, and the briefest encounters I had with Martin over those two experiences. It changed me more than I got the chance to tell him.

The West Awakes, and Making Waves in Clare, by Dermot Hayes

dermot hayes.jpg
Dermot Hayes and his wife Marian

In the mid-eighties and up to 1992 I worked in a place that was known locally as  ‘’The Shed’’: Roxton, Corofin County Clare. I am a native of there and from a family of 13 children. My family expected me to remain an invalid at home: and go to mass, with only the annual trip to Lourdes to look forward to. None of that auld craic for me…!

The Shed was formed by a group of liked minded people with a vision based on equality, socialism, self-sufficient and challenging reigning view of private and state employment. We experimented with new ways of living and sharing ideas. We owned a plot ground of about 4 acres of land, on which we build groups of purpose built buildings. We also had a stake in lands that held cows and calves, as well another stake in a quarry at the Cliffs of Moher.

The village of Corofin was over two miles away. This is very rural north Clare, where a stranger would be spotted sticking out like a sore thumb. North Clare had seen an explosion of ‘’hippies ‘’ come in due to Maggie Thatcher’s strong view on dismantling the welfare system and the coal mines.

Europeans were becoming unhappy with the drive for mass production on land and regulations.

We in The Shed were a beacon for a lot of these alternative types.

It was there that I met Martin Naughton first in 1992/3. With my mobility becoming an ever increasing issue, it was suggested a few of us who had disabilities in the area come together and look at what we could do together. That was when the Disabled People of Clare was born. We had the support of other folks who were part of ‘’The Shed’’, which was made up of many varied groups, like the Shop, School, Quarry Group and Land managers, as well as environmentalists.

We all agreed with one main thing: people with a disability should and could be very much part of any community. This coincided with views of Ann Marie Flanagan, Donnach Rynne, Declan Conscidine, Thomas Connole and many others who I was fortunate to have met on the long road to where I am now.

The only big intuition that existed in Clare was known as the ‘mental hospital’, where hundreds were send behind walls, particularly if you were seen as odd, awkward, difficult, or blocking someone getting their hands on a farm.

Children and young adults who were deaf, blind or had a learning disability generally children and young adult were sent out of the county, usually to Dublin.

Fortunate that Donnacha knew of Jana O Bowe who had visited Spanish Point in West Clare where they had a hostel and restaurant.

The years between 1992 and 1995 were critical in building up a profile of the group, a challenge in an age before social media.

We were determined to expose the idea of people with disabilities attending workshop training with no regard for actual jobs, or qualifications. This body was run and managed by the now debunked National Rehabilitation Board.(NRB).

We managed to get media coverage to say the very places that placed people with a disability in services were not accessible. We got this highlighted in Dail Eireann, and the media picked up on this. From that point when we met Martin Naughton, we remained comrades through thick and thin.

The group met almost weekly, spreading the messages of this new language of Independent Living and freedom and choice. After a torturous 12 months of going through the Constitutions of the Forum for People with a disability line by line, we finally adapted and signed up as a Legal Company. We altered the Forum’s ones to suit our views, wrangling over words like should, or could. We succeeded and learned a lot from the exercise together.

Directors of the Company were the now deceased trio Peader McNamara, Jermone Finucane and Tony Coogan, as well as Ann Marie Flanagan, Declan Consicidne, Thomas Connole, Sean Leamey, Donnach Rynne and I as Company Secretary. We were of various ages and views, and we all had a disability. I was elected among my peers to be the Manager.

We set up in the middle of rural Clare. It was a lovely office with tiny rent.

I remember Joe T [Mooney] came down and felt at home in the alternative lifestyle we were living. Others came from around Ireland to see us living in our community. We had a kitchen/canteen there which all the entire Shed community shared – not always the most hygienic place to be!

By 1995, we heard through CIL office in Dublin that we could get involved in a Community Employment Scheme. So we did – with the big help of Martin as they were the sponsors on paper. We were part of a satellite of CILs who benefit from a national guarantee of sponsors running a CE scheme. That gave us staff and funds, along with the funds we received from others bodies, like the NRB before it closed, Council and People in Need. By the end of 1995 we were reaching for the stars.

During that local build up we were heavily influenced by what was going on in the Forum and CIL nationally. Minister Mervin Taylor was persuaded to do a detailed consultation with a people with a disability, and all relevant bodies involved. DPOC managed to get this touring civil service body to visit Clare twice. It was very exciting!

Jerome Finicune was a Kilrush man living in Ennis and had a wild reputation for drinking and driving. His songs were legendary, the use of wheelchair never stopped him, he lived his life as a fast pace. Jerome and others of us would set off to events around Ireland between 1994 and ’96. We met and enjoyed a lot of hospitality in various part of Ireland while CILs were growing. He was one of our CE staff. He died as the result of injuries sustained in a car crash in 1999. He must have been in his mid-fifties.

Geraldine Keane was another west Clare woman who moved to Ennis; in fact she was my next door neighbour in our new Council estate. When she joined DPOC in 1997, she took to Independent Living like a duck to water. She worked for the Brothers of Charity and was also a member of the IWA. Geraldine played an active part in the DPOC. She was a good Leader and managed her Personal Assistance well in a very managerial way. (RIP November 2005.)

She was Treasure of the DPOC for a period. Like many of us in the DPOC, Geraldine got involved in the acting project we took on. We travelled to Belfast, and Dublin as well as around the county of Clare. That was an amazing time. She died too young at 45 after a long illness.

Martin Slattery was a conservative man who found it hard to accept his disability in midlife. He had been a garage owner and knowledgeable man around issues of transport and minding funds. His biggest love was betting at the bookies and he always maintained he came out even from the betting, which was a weekly ritual. He was genuine in his study of the horses, riders and owners.  He proved his readability when it came to spending money. Those of us who wanted to spend; Martin would be strong on ethics and durability.

I found that he was a good sounding board when issues arose, especially after a tough meeting. Martin was also a CE participant. We never worried about conflict of interest. The Sponsors of the CE scheme meeting often met before the DPOC Company meeting or after. There was a lot of overlapping in personnel.

Martin slipped away after a short illness during Christmas 2008.

Michael Chambers was another west Clare man. He was in full flight when he had a car accident, leaving him using a wheelchair to get around. He then set up business from home: design and printing. This was way before social media and DIY printing! Michael became a user of Personal Assistance, and while he never was active with the DPOC, he was a member. Michael, another member and I attended a critical meeting in the Mid-Western Health Board in October of 1998 which laid the group work for Personal Assistant funding – our first in fact. Michael was known well politically as steady hand and had great knowledge. Michael passed away after a long illness in 2010.

Patricia Kelly was well-loved and a bright woman who went through a lot of family pain and anguish, having lost her sibling Helen in her mid-thirties, and then her mother. Patricia loved to come to Ennis from twenty-five miles away, and she attended the Enable Centre weekly. She was a regular feature in the DPOC and active in the sense of questioning systems and events that were not to her liking. One she skydived. Hard to visualise now, as Patricia has a significant disability, but she had the will of a lion in full battle! A poem was written about the experience, by a local poet. She died in the autumn of 2016 after a short battle for life. She was far too young; she was only in her late forties.

Pat Carey was a quiet country man in full health, until MS took hold and he had to use a wheelchair. He adapted well to his new surroundings.  He was a separated dad, with three daughters who adored him. Pat loved the social life of the DPOC, and to the best of my knowledge was bagged for drinking and driving! He was a solid companion and was also on the CE programme in the DPOC.

His death too early in life saw his three young adult daughters coming of age and making their way in the world. This was testimony to the steady guidance he gave his three girls. Pat died in 2014 after a short illness.

Bernie Carmody is a lady I only got to know a short few years ago. Bernie had spent time in Baldoyle, Dublin where she got to know Martin Naughton. Bernie came back to Clare in her early twenties. She got a nice job in Shannon Free Zone. She stayed there until the company closed thirty years after. Bernie joined Clare Leader Forum in 2013 and was a great addition as she had a great personality. She was up for was game for all kinds of shenanigan’s we got up to. Sadly she passed away after a battle with recurring cancer in June 2016.

Pauline O’Loughlin is worth a mention. She had a very tough life. She was involved in the DPOC. Her PA was her sister which, as it turned out, was not the ideal situation. She died in 2004 after a long illness. She was a friend and family friend of my bigger family.

Tom King joined the DPOC in 2000. He acted as Chair and Treasurer, and appointed to sit on the CIL Board when CIL was looking for people to be involved. Tom was a complex man. He oversaw the closure of the Disabled People of Clare Ltd.  His political believes were well known. He was a regular to Lourdes and died after a long struggle with his Cystic Fibrosis in November 2016.

 

To put a tail on this it is worth it. Suffice to say, I met a lot of great people in this journey so far with in the disability sector. Mountains we thought we never get over we got over them. Places we thought would never change have changed.

We went to Strasbourg on a number of occasions to raise the flag of freedom along with our comrades all over Europe.

People with a disability from Clare protested more than once outside Dail Eireann.

Taboos  that were  held in the seventies/ eighties have been challenged. People with a disability got married, had babies, and drove cars. What a change.

We have a regular voice on the local radio stations. 

In recognising that we have made progress, we have a long way to go yet, particularly in terms of access to jobs, housing, education and ratification of the UN Convention. We are not happy being second class citizens.