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

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

My Experience of Employing Personal Assistants – We must Have the Courage to Bite the Hand that Feeds Us – By Peter Moore

 

peter moore
Peter Moore

 

 

I employed my first assistant in 1984, shortly after Liam Maguire’s death.  I was 33 years of age, and Liam was such a huge figure in the disability rights movement of the time and had had such an influence on me I decided a book about his life should be written.  I made preliminary inquiries hoping, to some extent, someone else was doing the same thing.  Upon discovering nobody was, I proceeded in pressing ahead.  In doing this I was helped by my great friend at time, Paddy Byrne.  Paddy had giving many years of voluntary service to the Irish Wheelchair Association and by then was employed as its PRO.   

 

It was Paddy who decided that the project required a budget of £5,000 (I was so naïve at the time I hadn’t even considered the question of cost).  The IWA gave me a grant of £1,000.  We also applied for funds to the trade unions and Aer Lingus, where Liam was employed since just before his accident.  I got no funding from Aer Lingus or the trade unions.  A year or so later  I got two free tickets to New York, which enabled me to fly on to the Bahamas where Disabled Peoples’ International were holding a convention.  People with disabilities from all over the world, who knew Maguire, were going to be there.  If I was going to have any chance of covering the part Liam played in the international disability rights movement I knew I had to get to that convention. 

 

We advertised for a secretary in the evening newspapers and eventually I took on Brenda Kelly who lived very close by, although I don’t remember that being an important factor. I paid Brenda £2 an hour and we came to an arrangement whereby I paid her £5 every time she drove me to an interview. Most of Liam’s family and associates lived on the south side of the city. Apart from the £1,000 I got from the IWA, most of the funds for the project came from my own resources.  In 1981 I was knocked off my tricycle in a road accident and used the compensation from that to cover expenses. 

 

Liam Maguire’s biography was published in 1990, which happens to be the year a group of eight people with disabilities came together to talk about independent living.  To be honest it was becoming nothing more than a talking shop until Martin Naughton announced that he had secured funding from the EU’s Horizon programme for a two year pilot project that create and deliver a service not heretofore available in Ireland.  Thus the Incare project, which later incorporated Operation Get Out (which took people out of institutions and set them up in suitable apartments with adequate pa cover) began .  The Horizon funding ran out in 1994, and the government gave the management of the PA service over to the IWA

 

Between 1992 and 1994 when CIL managed the PA service and organized the training in conjunction with FAS most the PAs were young people, not long out of school.  It was much the same in first years after IWA had the management, indeed in this period one PA, who worked for me part time was just 16, and not yet finished his secondary education.  He is one of the best personal assistants I’ve had. 

 

In today’s environment I don’t see the HSE granting enough hours to a young person to write a book.  Recently a young woman wrote on her Facebook page that she would have went to University had she been given adequate supports.  The Irish authorities need to recognize independent Living is as much about personal development as the bare necessities of life.

 

Recently, we are hearing more and more that the HSE are moving towards demanding that nobody can be employed as a PA without a qualification in social care (Fetac Level 5) with no mention of independent living or the right of people with disabilities to decide their own lifestyle.  If I am ever forced to employ somebody with a care qualification I will make as much trouble as I can.  Firstly I would point out to any HSE official that some services they have direct responsibility for are poor examples of good practice Áras Attracta (which first hit our screens in 2014) and currently the Grace story being two appalling situations that came into the public domain.   Qualified carers often think they have the right to tell you how to live your life. 

 

Ultimately we must have the courage to bite the hand that feeds us if we want true independent living to survive in Ireland.

Our ‘Father’: Ed Roberts

Today, the 14 March 2017, marks the 22nd anniversary of the passing of Ed Roberts, otherwise known as the ‘father of the Independent Living Movement’. The first American Center for Independent Living was established in Berkeley, California in 1972 and Carmichael House was set up twenty years later in 1992, with Ed Roberts’ (and others’) philosophy in mind.

 (by Sarah Fitzgerald)

I absolutely despise the use of the word ‘hero’ when describing a person with a disability.

I find the term irritatingly patronising and often inaccurate. British Comedian Laurence Clark is making a living by challenging the notion of the ‘inspirational disabled person’, reminding people through his routine that we (people with disabilities) do not need to be congratulated by strangers for achieving the everyday things that other people do on a daily basis, such as going to college, getting married and having kids. In fact, he is so passionate in his refusal to be labelled an inspiration that he named his 2012 stand-up tour ‘Inspired’ and voiced his desire to be recognised as a ‘normal’ person who does normal things.

As a person with Cerebral Palsy myself, I can appreciate how annoying it is when people  have low expectations of you as a disabled person, but I must confess that even I have my heroes. And this particular man, who died this day twenty-two years ago (14 March), has made such a lasting impression on me, even though I’ve never met him, and obviously never will.

His name? Ed Roberts.

I wasn’t going to write this blog because I didn’t want people to think I was dull or lame, but I’ve read back my previous blogs and I think we’ll all agree that that ship has sailed. Ed Roberts was known as the ‘father of the Independent Living Movement’, and it is down to his collaboration with other activists during the 1960s and 1970s that many of us enjoy a Personal Assistant Service today.

When I used to spend days researching the history of the Independent Living Movement, what struck me was the lack of progress for people with disabilities prior to the 1960s.  Just twenty years beforehand, people with disabilities were being murdered en masse by the Nazi regime (it is estimated that 700,000 disabled people were murdered during World War II). The 1960s, however, was a ‘radical’ period of social change, when people in America started to speak out against injustice, and marked the start of women and ‘black’ people as they were known starting to take radical steps to achieve equality.

Ed contracted polio  in 1953, at the age of fourteen. He never recovered, and was essentially paralysed and left dependent on an iron lung. As time went by, he could spend time out of the lung using a technique known as ‘frog breathing’.

 Given the culture of the time, Ed was deeply ashamed of his newly acquired disability and stayed at home, completing some of his high-school education over  the telephone. His mother eventually forced him to go back to school for a few hours a week, and Ed learned that being different was not necessarily a bad thing. He began to see himself as a ‘star’ and wondered how he could use this to his advantage.

Like many people with disabilities, even today, Ed and his mother Zona had to fight so that Ed could complete his high school diploma. The school initially refused to award Ed his diploma because he couldn’t get his driving licence or do PE. This decision was overturned after much protest from Ed and Zona. Ed then decided that he wanted to study at the University of California in Berkeley, and was famously told, ‘We’ve tried cripples before and it didn’t work.’ Eventually he was granted campus accommodation, a small wing of the university hospital, the only place that Ed could put his iron lung. Ed agreed on the condition that the space was treated as a dorm, not a hospital.

Ed’s admission into the University paved the way for other people with disabilities to stay on campus too. They formed a group, dubbing themselves ‘The Rolling Quads’ and started enlisting the help of ‘attendants’ (now known as Personal Assistants) who they recruited, trained and fired themselves. This was a radical concept – disabled people directing their own services. Ed referred to it as ‘cripple power’, and the idea of the person with the disability directing services remains central to the Independent Living Philosophy. Ed helped to open the first Center for Independent Living in Berkeley in 1972.

As you can tell, I’m fascinated by the Ed Roberts story, and always have been. He was one of the pioneers of a service that I, and so many others, enjoy today. Yet in spite of positive progress in Ireland, namely the opening of Dublin CIL in 1992, many people with disabilities in Ireland still live in fear of their Personal Assistant Hours being cut. Many are institutionalised in their own  homes, having a service only to help them up out of bed and put them back into it. Ever since the recession hit Ireland, the concept of empowerment has disappeared and instead we are left to prove, time and time again, that our PA services allows us to live, not just merely exist.

And for me, that’s why I will always try to honour the memory of Ed Roberts – not because he was some absolutely godly man who is my inspiration, but because he was an ordinary man who was prepared to fight for the ordinary things that sadly, many people with disabilities still can’t afford to take for granted – PA Services, education, employment. The only way to achieve true equality is to come together and shout loud to make ourselves heard. We must be Ed’s legacy so that our children can be ours.

To me, Ed isn’t just inspirational. He is so, so much more than that, and deserves to be remembered as more than that. He and his colleagues gave us the opportunity to pursue our dreams, live in our own homes and have our own families. Above all, he taught us never to accept the status quo, as equality will never be achieved through complacency.

My Journey to Aldi, by Jackie McBrearty

Jackie reminds us that it’s the little things that make a big difference.

 

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Jackie McBrearty and her Guide Dog Rhum

 

 

When I lost my sight at 16, I never considered for one second my life was over. I knew I would have to adapt a few things, like I’d never drive a car, but switched a Ford for a Labrador instead, then a Shepard retriever.

I left home soon after I lost my sight to better myself and prevent myself or a family member getting harmed by a pillow! I moved to Sligo and lived in a hostel, linked to the NTDI but realised this living wasn’t for me so moved into my first wee flat.

I did my leaving cert, got my social care diploma, a trip to Alaska, then back to get my Honours degree. Throughout all these adventures I lived on frozen pizzas, McDonalds, the college’s sausage rolls, curry chips and so much chocolate Cadbury’s would be proud, because shopping and cooking was out of reach.

When I finally moved into my own house in 2006 my life took another change: this is when I got my first PA. This PA was all mine for my own personal use, as all through my 3rd level education I had one to assist me with lectures, note taking and navigating the college. I realised Tesco, Dunnes and Centra did more than milk and bread! The founding  CIL leaders have given me the ability to decide where I shop, the special offers without fail being read to me and the PA telling me of  sauces and frozen vegetables they use.

In 2008 I got my first motor: a little black Labrador called Bangles. This dog enhanced my Independent Living and this continued in 2015 when my big hairy Shepard came into my life. Throughout all of this, I have had five simple Personal Assistant hours. These five hours gets me a cuppa, a weekly shop, a hairy floor hoovered and an interaction with another person.

I will be forever grateful to the men and women who have stood up for my rights to access this service. I’ve learned a lot along the way and have changed providers but the philosophy is the same and I can go to Aldi, which would be out of reach without my two legged, workable eyed human.

 

I know things aren’t perfect but we’re taking sheets out of the books of the men and women that came before us. We will be setting the path for those coming up behind us. So because of the founding leaders who got us here, we as the current generation will be  shaping the road ahead for the future people.

I for one am proud for being in this Independent Living Movement. I can shop, chat and chew.

My Journey through the Independent Living Movement, by Lorraine Cooke

Lorraine Cooke recalls her experience of moving from a residential service back to her family home, before moving to a home of her own. She also tells us why the Independent Living Movement is so important to her.

 

lorraine cooke
Lorraine Cooke

 

 My name is Lorraine Cooke.

This time 7 years ago I was in a dark place.  I had overcome barriers in the past and was determined that this time around wouldn’t be any different. I was led to believe that because there was no funding for me to go to the next stage of a residential service that I would be left with no choice but to return to my family home in rural Ireland.

This was an option that, after being away from home for 12 years, I was not willing to accept without a fight.  To this day, I am thankful to somebody in Directory Enquiries who connected me to the Disability Federation Of Ireland in the first week of July 2010, when I was still in my family home. 

From that moment, the support that I have received has  given me opportunities to live independently. Thanks to the support of a care assistant funded by the HSE, I can now do things that wouldn’t suit my lifestyle if I was to live in the countryside.  It’s for this reason that I took part in the last protest that Martin Naughton organised in September 2015.

Unfortunately, many of the issues that we were campaigning for have yet to be resolved.  For me personally, I remain concerned about the lack of equal access to an education that should be designed to give children who require extra supports that they need to achieve their best in the locality where they are from and that doesn’t discriminate against their gender, race, beliefs etc.

Another issue close to my heart is the ongoing waiting lists and access to treatments that should be made available without delay. The HSE should not be playing games with the lives of people like Vera Twomey, who as I write this blog is walking to Dublin to raise
awareness and get the vital treatment that she needs for her daughter Ava. 

I don’t have a life threatening condition but know that waiting for a second opinion to visit an eye consultant who I hope to get an operation from is daunting when I think about it. Therefore I cannot imagine the pain that Vera is going through at the thoughts of losing
her daughter when a solution is available. 

Last but not least, one of the main reasons why I campaigned was to add my voice to the housing emergency that Ireland has because the government refuses to open empty buildings.  Along with housing our homeless, these properties could save the state by moving people out of residential care and supporting them with a care package in the community, if that is the choice that meets their needs. 

I am fortunate that the HSE assessment that I had in March 2011 agreed that living independently in a community of my choice was the best option for me.  Unfortunately, where I currently reside is quite small and therefore I rely on my personal assistant to carry out certain tasks like go down to the basement to do washing. Things like this, as well as contacting councillors to state my case for affordable accommodation and looking for hospital appointments is partly why I have been a quiet activist lately.

Nonetheless, I will continue to challenge the barriers in order to gain equality, which was Martin Naughton’s biggest dream.