Failing to practice the art of inclusion for people with intellectual disability

YOU have got to make a trip to Cork. The city is looking beautiful (of course) and it’s full of life. It seems as if the people of the Rebel County are thumbing their nose at the recession, and getting on with things as they always did. Streets are busy, restaurants and bars are hopping, there’s a lot of colour about.

Especially in the Crawford Art Gallery. If nothing else drags you down to the real capital, you’ve got to see the Outside In exhibition. I promise you, you’ll be blown away. There’s technique, passion, vibrancy. Wander around (there’s a few days left), and you’ll be entirely captivated. It might not even occur to you (unless you read the catalogue) that this is entirely the work of people with an intellectual disability.

I was there last Thursday, because I had kindly been invited to do the opening. So I got there a bit early, to see the work and try to meet some of the artists. There’s art from Amsterdam, New York and Brighton. But there is also amazing, stunning work from Cork City, Youghal, and Callan in Co Kilkenny.

One piece in particular just blew me away. It’s an extraordinary telling of the nativity, in words painstakingly cut out of sheets of white paper, which are then all stuck together to make a long scroll, and backed with shiny red paper. It has been hung in an atrium space, and it stretched from ceiling to floor. It’s simple, dramatic, and moving.

And then I met Johnny, the artist (I’m sorry I didn’t get his surname). He’s an elderly man, with hard to understand speech. I asked him to come to the microphone with me to explain his work to the audience. It wasn’t easy for him, but Peter Murray, the director of the Gallery, stood beside him and turned the pages of the book that had inspired Johnny. It’s a simple pop-up book, aimed I guess at children, that describes the first Christmas in very colourful terms.

Everyone there got it. They understood what had inspired Johnny to create his work. But none of us, I’m guessing, really understood what had moved Johnny to turn a children’s pop-up book into a stark, simple, towering statement. He had represented the story of the nativity perhaps as it might have been represented in old Roman times, on an ancient scroll that seemed to go on forever.

I didn’t understand the process because, unlike Johnny, I’m not an artist. But that didn’t stop his work, and the work of all the other artists there, from making an extraordinary impact. Let me repeat. You’ve got to try and see this exhibition. And if you get the chance, try to remember a couple of other things about these talented and creative artists.

First of all, they’re all lunatics. In the eyes of Irish law, that is. Ever since 1851 the welfare, and in many senses the rights, of people with an intellectual disability, have been governed by the Lunacy Regulation (Ireland) Act. It’s a piece of law that presumes that no one with an intellectual disability has the capacity or potential to make a decision about anything at all.

The Government has now (more than a century and a half later) published legislation (it’s called the Assisted Decision-making (Capacity) Bill 2013), to update the law and to remove the legal references to lunatics. Once the bill becomes law, a person with an intellectual disability will be presumed to have capacity rather than incapacity in relation to a range of decisions affecting their everyday lives (much like the rest of us. In the words of the bill, “a person’s capacity shall be assessed on the basis of his or her ability to understand the nature and consequences of a decision to be made by him or her in the context of the available choices at the time the decision is made”.

There’s real progress here, as far as it goes. It has to be said that the bill is deficient in some pretty fundamental respects. For example (and this is one of a number) it is a crime for two people with an intellectual disability who are in love with each other to have sexual relations. It will remain a crime after this legislation is passed. No matter how delicate that might seem to some people, it’s an aspect of the law which is cruel and must be addressed. Hopefully as the bill passes through the Oireachtas, the Government will be open to amendment on this and other issues.

The second thing you need to remember about the artists is in the title of the exhibition. It’s called Outside In — The Art of Inclusion. I know what that’s intended to mean, but the truth is that most, if not all, of these highly talented artists have experienced their share of exclusion in their lives.

Johnny lives in St Raphael’s in Youghal, and it’s a place that has clearly facilitated and enabled him to demonstrate the potential he has. Other places might not ever have seen that potential.

Despite their capacity, and their undoubted potential, it’s a fact that many people with an intellectual disability need additional support. So do their families. It is one of the great failures of our State that policy and resources have always failed to reflect this. I got an email the other day from Francis Conaty, of the National Parents and Siblings Alliance, expressing what he called his dismay over “the lack of honesty in the many statements from and positions taken by Government on disability services in Ireland”.

Services are at breaking point, he says, and he has done a careful analysis of the figures available from the National Intellectual Disability Database to prove the point.

According to Francis, (and these figures are all available from official data), residential waiting lists have gone from 1,320 in 1999 to 2248 in 2011 — some people, unbelievably, have been waiting on the residential list for over 13 years. The number of people in need of respite with no service went from 868 in 1999) to 2,040 in 2011.

In the case of people who did have a service but required it to be changed (usually a need for increased services), people requiring immediate changes to their residential services went from 1,677 in 1999 to 2,865 in 2011.

There are no figures available yet for the post-2011 period, although no one expects anything but further deterioration. Two things are clear. First, despite all the years of the Celtic Tiger, we failed to invest even when we had surplus after surplus. Second, Francis makes the point, and I agree, that it would be difficult if not impossible (save possibly in mental health) to find any aspect of required State services that have suffered the same lack of investment and policy failure.

That’s a scandal in and of itself. When you’re confronted with amazing talent and potential, and meet the artists who are capable of so much, the scandal of their continuing exclusion makes the scandal even deeper. They have an awful lot to teach us. It’s we who don’t seem to have the capacity to learn.