Making the invisible visible

 

Many of us like to think we could write a book about our lives, but very few of us actually see it through. We worry that our triumphs, disasters, loves and losses mightn’t, somehow, be interesting enough to other people. We assure ourselves our lives aren’t that relevant. So, for the most part, the field is left to the important and self-important among us.

I spent many years as a journalist interviewing people who had stories to tell; athletes, politicians, entertainers, business leaders, academics, clerics and paramilitaries. And, while their lives were undoubtedly interesting, and in some cases even heroic, I was always conscious that they weren’t really any more interesting, or heroic, than most of the other, ordinary civilians I knew. Pat McArt, the former editor of the Derry Journal, agreed, and commissioned me to write a weekly series entitled ‘Everyday Folk’, in which we would profile somebody not normally seen on the media radar. And it worked like a charm. Unsung lives, I quickly discovered, were all the more intriguing than public ones – precisely because they had never been explored. So when I got the opportunity to help with Destined’s new book, charting never-before-told life histories, I leapt at it.

It was Dermot O’Hara, I must stress, and not me, who coined the term ‘Invisible Lives’ as a most appropriate title for this project. People with learning disabilities, he reasoned, spend large parts of their lives completely unseen by society. Dermot’s daughter Róisín, a founding director of Destined, summed it up very succinctly, in her interview, when she said: “People would ask my mum and dad, ‘How’s Róisín doing?’ And I would be sitting there, thinking, ‘Why don’t you talk to me?’ I felt invisible.”

I was little better. As a reporter, I would have spoken occasionally to teachers, social workers and carers about the needs of people with learning disabilities, but until I started working on this project, I’d never heard from the people most directly affected themselves.  Even yet, in recent meetings with Destined members, I have found myself politely upbraided for failing to listen fully and properly. As Michael Dobbins, principal of Foyle View School, pointed out, the real learning difficulty lies with society – or in this case with me. And it’s not so much that the lives recounted here were always invisible, but rather that the wider public chose to be blind to them.

 

In the summer of 2009, the Destined group took the decision to compile, in the form of a book, their experiences as adults who had grown up, and live on, with learning disabilities.

The group felt it was also important to record the experiences of their parents, friends and guardians - those described by Bernie Gallagher as “quiet heroes and heroines, who have made great contributions to this earth, but never get, or seek, any credit”.

To this end, I was asked to facilitate a series of interviews, the format of which was decided by Destined members, who then conducted the dialogues themselves. The interviews were then transcribed by Destined members, and edited, after which the group reviewed and amended the work before sanctioning the final draft.

The cover of the book was also designed by the Destined group, in conjunction with Jim Collins of the Bluebell Arts Project. And any and all publishing expenses were paid out by the Destined committee, who sourced the funding for the project and organised the book launch as well. Importantly, the group also set a series of deadlines, to ensure a pre-Christmas publication, and didn’t miss a single one of them. My involvement was solely that of editor.

The standard of interviewing, as I witnessed time and again, was of the highest journalistic quality. The reporters agreed a comprehensive set of questions (included as an appendix) – and then showed flair in following up loose ends and pursuing new lines of enquiry.

But if the questioning was professional, the responses were illuminating. This book provides first-hand insights on everything from institutional abuse to parental sacrifice; from bullying and intolerance to friendship and joy. Every single story here has something different to tell you. Something unique to teach you.

Moreover, the stories here are not in any way negative in tone. Quite the reverse. They are uplifting, positive and almost universally uncomplaining. There is little grievance, but boundless gratitude; little blame, but frequent tribute. The book is a celebration, not a court of inquiry.

There are many things I hope you take away from this book. You might find yourself asking why some people with learning disabilities are expected to work for nothing while the people standing beside them, doing the same job, are paid a full salary. You might wonder why, of all the people with learning difficulties interviewed here, only one is in a long-term relationship. Or you might just shake your head in amazement at how someone can be forced to spend half their life in an institution, then adapt immediately to the “freedom” of semi-independent living as soon as they are offered the chance. Maybe they should never have been locked away in the first place...

You will be comforted, no doubt, by the fact that education and health provision for people with learning difficulties has improved greatly during the lifetimes of those interviewed. Indeed, you can track the societal changes, and what these changes have meant, through the stories here. But it is also essential to remember that there is still a long way to go, as carer Paula McNamara explained: “Many people with disabilities can’t get a job despite their skills. The services aren’t joined up and are underfunded. Fantastic case workers are overstretched, and because of this, young people are left stuck at home.”

Destined have shown that they are not prepared to accept the “stay at home” option any longer. They pursue a goal of full inclusion and empowerment, seven days a week, through a never-ending schedule of activities and a thriving drop-in centre. They campaign for the right to paid employment and access to full citizenship. And they do all this in a spirit of fun and kinship that leaves other organisations running to catch up.

In short, the Destined members have made the invisible visible, and for this, we must thank them. Most importantly of all, however, we must see them now and listen to their stories.

 

Garbhan Downey, October 2009