FERGUS FINLAY: Unmask disability, enable a right to expression, and magic can happen

MARGARET McLOUGHLIN was born with three things. Down syndrome; a serious untreatable heart condition; and a huge, infectious, and empathetic personality. She wasn’t expected to live. But live she did, to the fullest extent that was possible.

She had irrepressible energy. One minute she’d be tearing around at full velocity, the next gasping for breath. But nothing could stop her, and the lasting memory of anyone who met her was of someone with the talent to make you want to smile.

Margaret died 10 years ago, after living into her 20s — longer, to be honest, than those who loved her expected. To honour her memory her family set up a fund which sponsored an art and creativity project at the National Institute for Intellectual Disability (NIID) in Trinity College.

Last week the first result of the project, a book, was launched. The launch was one of two events I attended during the week that made a powerful point about what can happen when talent is recognised, when a right to expression is enabled, when citizens with an intellectual disability are allowed to be free.

The book sponsored by Margaret’s family is called Pen and Palette. It’s beautifully produced. But its content is overwhelming. I can’t reproduce any of the paintings here, in their raw and creative honesty but motion pours out of them, in a way that brings you up short as you turn the pages.

But how about this for a poem? It’s called Daddy, it’s by Sandra Flynn, just seven lines long. Read it a couple of times, and I challenge you to try and forget it.

Not at home anymore.

Because of my disability?

Divorced.

(don’t you love Mammy anymore?)

Please —

Come home. (I’ll be better, I promise.)

I miss the way things used to be.

Or these few lines – they’re from a longer poem called Why am I last? by Áine Lawlor:

Open your eyes to listen.

Be fair

Be sure

Be honest —

That’s the best thing to do.

Black or white

It’s not fair that

Some times you don’t see us

Through the smoke.

There are more than 30 poems in the book. Funny, sad, shocking, simple, and incredibly complex. There’s a note at the start by Brendan Kennelly that describes disability as a mask, and this work goes a long way to prove that.

The people who produced the book are, or were, all students pursuing the certificate in contemporary living programme in the NIID. It aims to set new standards in terms of recognising the rights and abilities of people with an intellectual disability.

Naturally, the NIID and the programme is under-resourced, and struggles to get any recognition whatever from the State which doesn’t recognise the programme in terms of the CAO, and pays no capitation fees or any other financial contribution. It refuses to apply various tax reliefs that are available for student contributions throughout Trinity College to the fees that NIID has to ask parents for. The State prefers disability to ability, it often seems to me.

And then on Friday night I went to a play. Actually, half a concert, half a play. It was Laker’s annual showcase in the Mermaid Theatre in Bray. What a night!

Laker is a sports, social and recreational club in Bray. It’s aim is to enable children and adults with an intellectual disability to develop their innate skills and self esteem in an environment which is inclusive and supportive. The key word here is “enable”. They don’t try to fit square pegs into round holes. They just believe that everyone has an ability, and they offer an extraordinary range of opportunities, in a pretty tumbledown building, for their members. Not for their clients, or their service users, or their patients, or their customers — because they don’t use any of those words and they don’t think that way. They believe in ability.

Lakers is part of Special Olympics, and its members won a lot of medals at the National Games in Limerick. But who knew they could sing and dance, play the drums, fill the stage with graceful rhythmic gymnastics, and act like that!

The play they did was A Midsummer Night’s Dream. Not a bowdlerised version, but one that made no compromise with the language. “Ordinary” actors worked alongside actors with an intellectual disability to bring Shakespeare’s comedy to life in a way that kept us all entranced. There were quiet moments and laugh out loud moments, and there was a standing ovation at the end.

Of course the audience had a lot of parents and family members bursting with pride. But there were two things on display here. Real appreciation of real talent and energy for sure. But certainly in my own case there was a dawning that something really different can happen when people’s ability is recognised. In the first half of the show there was a stunning hip-hop dance. It was funky, and sexy, and colourful. Literally, it wouldn’t have been allowed in my time.

When I was a younger parent of a person with an intellectual disability, the special schools put on a nativity play and all that sort of thing. But the idea of people being free to express themselves, in whatever way they want to, was simply never thought of. And in too many cases it still isn’t.

There is a huge and growing gap between the service providers that are stuck in the past, with their paternalistic “we know best” models, and those that recognise their obligation to work alongside equal citizens.

YOU’LL see that gap in the Hiqa reports starting to be published as a result of their inspections of centres that provide services, including residential services, for people with an intellectual disability. Whenever we talk about standards, we tend to think about things like cleanliness and hygiene.

But the first paragraph or so of Hiqa’s standards says this:

“Children and adults who live in residential services should enjoy a good quality of life and live in a place that feels like home, one that upholds their personal dignity and respects their privacy.

They should have a range of opportunities to foster relationships, participate in the community, both within the service and in the wider society. Children and adults who use services should be enabled to engage in life-enhancing activities, including those that involve a degree of risk.

This requires, among other things, that they are supported by staff with whom they can communicate easily, who respect their individuality, dignity and privacy and who are sensitive to their aspirations and needs.”

When we start to accept these obligations, the results can be rewarding. But more than that, they can be really exciting. What’s stopping us?


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