Disability rights activist Martin Naughton's legacy: ‘He felt that if his story was forgotten, it would be easier to make the change he had driven go backwards’ (Life Magazine, Sunday Independent 3 March 2024)

BEGINS 

Sarah Caden

Martin Naughton never expected to have a long life. Born in 1954, children like him, diagnosed with muscular dystrophy, often died young. And Naughton was almost one of those, coming close to dying when he was 15 but living to fight another day. And fight he did, becoming a powerful and indefatigable campaigner for disability rights, a founder of the first Centre for Independent Living, and at the forefront of securing personal assistants (PAs) that would allow people with disability to live independently.

 

When he died in late 2016, Naughton had put decades of his story on paper with writer Joanna Marsden, who then had to make the decision to complete it without him. Now coming to publication, Never Know Your Place is a story of Irish society as much as Naughton’s personal history — an institutionalised childhood, an adulthood of ferocious, self-styled independence — that should push us to examine not only who we were then but also what inclusion really means now. To imagine the job’s all done is to forget Naughton and all his hard work.

“Martin’s policy in life and in politics was that if it’s not written down, it never happened,” Marsden says. “He felt that if he didn’t record his story, it would be forgotten. It was a two-fold fear. It was that he himself would be forgotten, but there was also the greater sense that he didn’t want the change he had driven, to get the PA services so that people could live in their own homes, he didn’t want that to be forgotten either.

Martin and Barbara Naughton in their first year at St Mary’s Orthopaedic Hospital for Children in Baldoyle in 1964 when Martin was nine and Barbara seven. Photo: Barbara Naughton

“And I think he felt toward the end of his life that this achievement was under threat. That’s a hard thing for people to get their heads around because they think that institutionalisation is a thing of the past, but when people have direct experience of disability, they know that it’s still a daily battle to get the supports they need, or the PA hours to make independence realistic. Martin felt that if his story was forgotten, that it would be easier to make it all go backwards.”

You could say there were two beginnings to Naughton’s story. The first was in his birthplace of Spiddal, Co Galway, where he was the second youngest child of 10, born to Irish-speaking parents whose people had farmed there for generations.

His older sister Maureen, had muscular dystrophy, he explains in the book and as a little boy, when he struggled to walk, his parents thought he might be copying her. Later, however, both Naughton and his younger sister Barbara were also diagnosed. Then, when Naughton was nine, he and Barbara went to live in St Mary’s Orthopaedic Hospital for Children in Baldoyle, Co Dublin, where his second life began.Pause

Naughton’s account of their journey from rural Spiddal to Dublin makes up the first chapter of his book. It’s heartbreaking in its childish detail. The pair called the institution “the Little Willie”, for example, as their only understanding of it was from a newspaper fundraising advert that featured a child of that name in callipers.

Dublin was strange and big and English-speaking. The hospital was daunting and the nuns who ran the place seemed forbidding. There were kindly people — such as their Spiddal neighbour, the actor Micheál Ó Bríain, and the hospital porter Kit Byrne, who remained a supporter and friend all of Naughton’s life — but most of all, the account is cut through with the knowledge, in retrospect, that he would never live at home with his family again. That life was over. His father, Naughton notes, never saw him walk again.

Remarkably, Naughton did not blame his parents or feel angry at them for sending him and Barbara to live at St Mary’s. When I talk to Marsden about Naughton’s book — because it is his book — she agrees that this is remarkable, but that there is common sense in it too.

“It’s one thing saying you would never send your kid to an institution,” she says, “but what if your child could only get physiotherapy if they were in an institution, or if you thought it was the only way to help them to survive? Services just weren’t available. We know it’s a struggle today, but at that time, there was no way you were going to get physiotherapy if you lived in Spiddal, it just wasn’t going to happen.

“Martin was right in saying his parents really had no choice, but he also says that his mum had reared a large family and had suffered tragedy, and he had huge compassion for his parents.”

Marsden recalls, however, that after recounting this chapter of his life to her, Naughton had needed a break from working on the book. “He said he had terrible nightmares after it.”

Naughton and Marsden first met in 2010, when she was doing a book of interviews with people with disabilities, to mark 50 years of the Irish Wheelchair Association. At that time, Naughton was a well-known figure in the areas of disability and in politics, distinctive around the place in his signature taqiyah-style hats. After the interview, Naughton said, “I’ll be back to you.” Marsden didn’t expect to hear from him again. “Martin was a great man for delegating and he kind of picked me to do this particular job for him and sadly he wasn’t here to see it through, but I want to honour his desire to get it done. I’ve tried to stay very close to the material he gave me, because it’s about finishing the story he began and remaining as true to it as possible. It’s not about speaking for Martin.”

Marsden is very aware that to speak about Naughton, without him here to speak for himself, runs counter to what he was all about. He hated the ‘doctor knows best’ attitude to disability. He sought always to represent himself rather than be represented. He lobbied long and hard for a change in societal attitude from caring for, to caring about people with disabilities.

In life, Naughton had very little strength in his arms and legs, but he had a strong voice and he used it. His activism started early. He was a natural leader, and good company, and in St Mary’s, with the help of porter Byrne, he organised a football team, table tennis, swimming and other sports. Some of his peers went on to compete at the Paralympics. He encouraged others to dream, while finding a way to do that for himself, too. Out of his success with the sporting activities, Naughton became an employee of St Mary’s Hospital as their recreations manager and in 1982, he moved out of the institution and began to live independently in a bungalow in Baldoyle that remained his home to the end. He needed supports, however. Initially this was all paid for out of his own pocket and he was reliant on the kindness of friends and neighbours.

As a young man, Naughton dreamt of moving to America, as his sister Chris had done. He set up a business arranging J-1 visas, and spent a long summer there helping that to run smoothly. The prolonged visit was an eye-opener. Americans loved his can-do attitude and responded to it, seeming to see beyond his disability. Naughton imagined he could make a good life there. His encounters with the US disability community opened his eyes to other things, too.

Independent-living accommodation with personal-care assistant support was a well-established practice, for one thing, but the attitudes and expectations of Americans with disability really caused him a rethink.

“Why,” Naughton says in his book, “did I feel I had to solve every problem? Did I see success in terms of becoming more like an ‘able-bodied’ person?... They introduced me to the idea that my disability wasn’t the cause of every problem in my life.”

Fundamentally, Naughton says, he saw that it was “fair to expect more”.

He saw, too, that while a good life was there for him in America, he felt a responsibility back home to other people like him. This new-found realisation that it was OK to ask and expect the State to support people with disability was what drove the rest of his life.

“Before we can change the world around us, we must first change how we see ourselves,” Naughton says. He had learned that in St Mary’s and in setting up the sports programmes. For example, where his family had seen his move as a small boy from the leg callipers that held him upright into a wheelchair as a tragedy, the older Naughton watched his pals fly around on their wheels playing table tennis, he marvelled at the physical freedom they gained from being in a wheelchair.

Fundamentally, his short time in America shaped how Naughton operated as an activist for the rest of his life. No more apologies, and many expectations. He was active with the Muscular Dystrophy Association, the Irish Wheelchair Association, and the Disability Federation of Ireland, among others.

He established Vantastic, a now nationwide accessible taxi service. In 1990, Naughton was a founding member of the Centre for Independent Living, which established the first PA programme, a model distinct and different from home help, as the person was assisted to live the life they wanted, on their terms.

 

In the book, Naughton recalls meeting up again with his life-long friend Mary Llewellyn, when she returned to Dublin from living abroad for a time. After noting that Naughton had lost strength in his arms in the intervening time, Llewellyn moved to help him get his drink to his mouth, only to be stopped and told that “No, this was the role of the PA who was with them.”

Before the PA model was State-supported, Naughton had found a willing succession of supporters around Baldoyle, and the village became as much his home as Spiddal had ever been. A gang of his local contemporaries were his first informal PAs, and over the years, it became their younger siblings, even their children. He had great friends in the village and the book really conveys how Baldoyle, also the base for the Irish Wheelchair Association, rose to the occasion of embracing him and many others who originally lived in St Mary’s.

One especially moving passage, near the end of the book, tells of a visit to Naughton’s bungalow in Baldoyle by Dermot Mooney, a volunteer and fundraiser for the hospital, who helped forge a connection with Celtic Football Club. He arrived unexpectedly at Naughton’s door one night in 2011, confused but keen to talk to him. Mooney was in the late stages of Alzheimer’s but the pair sat and talked about the old days in St Mary’s with great clarity. Mooney died a few days later, Naughton says, and the anecdote not only serves as an opportunity to recall the older man’s great kindness to him, but to illustrate that the relationship was two-way. It wasn’t charity on Mooney’s part, but true friendship and kinship. To care about, not to care for.

Marsden acknowledges that her ghostwriter role on Naughton’s book was a bit like that of a PA. She facilitated what Naughton wanted to do, but couldn’t do by himself. When Naughton died, he and Marsden were on a break from the book. “We had done one draft and I had a lot of questions and needed a lot of information but Martin had got caught up in the politics around cuts in PA funding and services and also around this time, between 2015 and 2016, I had twin boys and was caught up in that.

“I was away when I heard he had passed and it all happened so suddenly and was very sad, but I also hoped that he’d left me some specific instructions on how to complete the book. He hadn’t,” she says with a laugh.

She had the first draft of the years up to the mid-1990s and loose notes on the decades after that and Marsden tried to fill out those notes but realised that it felt wrong without Naughton. “I ended it in 1995 with the PA campaign, because beyond that I was trying to fill in blanks and I realised that wasn’t my job to do. I had to stay with the emotional energy of the part we had shared, and to go further and guess what Martin wanted to say would be wrong.”

Marsden feels it’s not her place to speak for anyone with a disability and so she’s reluctant to say too much about whether Naughton’s fears for the future were founded. “But talking to people, there seems to be huge concern in the community about where people with disabilities are at. I read about how people with disabilities can’t go to college because they can’t get a PA, or how cut-back hours mean PAs only come at a certain time or day and I think, ‘That’s not what Martin fought for.’”

Marsden says that Naughton wanted his story told so that there was a record of a time when the best option for a child with a disability was to be sent to an institution. He wanted people to know about it, to acknowledge it, to remember it. Additionally, however, Naughton recognised that getting rid of the institutions didn’t mean that all the work was done and inclusion or equality or independence were achieved.

“I remember Martin saying that institutionalisation is not a building, it’s a state of mind. If you say to someone you can only have your PA for one set hour a day and not necessarily an hour you want, that’s a form of institutionalisation.” That, however, was a message Naughton hadn’t fully formed when their work together ended and was not one for Marsden to make without him, she felt.

Still, simply by bringing Never Know Your Place to completion, Marsden keeps his experiences, ideas and activism alive, the last of which has informed a new generation of activists. So long as that is remembered, Naughton will always be alive in Irish life.

ENDS