WRITING IN ROSES

Thoughts about access to the arts for persons with severe disabilities--after hearing James Hogg on the subject, Mairide Woods

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Art is a part of what I’m about. When I’m not producing reports or articles, I try my hand at fiction or poetry. Ever since childhood I’ve had my literary fantasies (a published book of my own) with less realistic variations (a painting or a song!). And I have had a few stories and poems in print or on air. Of course I go to plays and exhibitions, read books and dissect what I’ve seen and heard, gossip about other artists.

Why do artists do it? We like to make it sound a hard grind: the draughty garret, the heartless publisher, the uncomprehending public… Aren’t there enough artefacts in the world already? I ask myself this on days when the creative juices flow like mud. But although I complain about my Muse, I wouldn’t leave her (him?) for the world. There’s nothing like the buzz of creativity.

What if I were disabled? There’s a certain equality vis-à-vis the naked page, though grinding out the words takes more effort if you can’t use the conventional means. Music and painting require a more specialised combination of talents–hand-eye coordination as well as the lark in the heart. Art is to some extent elitist. It does worry me that there are so few ways towards finding the buzz for those with severe and profound disabilities. My daughter Aoife loves music, but it takes a lot of cunning intervention on the part of others for her to produce even a random note. Painting puzzles her; she finds it vaguely amusing but, again, her hands have to be placed on the materials and moved around. What does she get out of it? The humble helper sometimes doubts and routine takes over- She has to be got up and fed and dressed; she doesn’t have to paint.

That’s where James Hogg’s injection of enthusiasm is so important. He believes that art in one form or other is for everyone. He gave a lecture at the Centre for the Study of Developmental Disabilities at UCD in May on Creative Arts for people with severe and profound disabilities. He emphasised development, enjoyment and accessibility–and he backed up the accessibility bit by showing us pictures of the White Top Centre at the University of Dundee, where an ideal sensory environment has been constructed for people with severe disabilities. He and his wife have also developed a Creative Arts pack aimed at this group. (Frontline hopes to have a review of the publication in our next issue.) The pictures of the centre had the Irish audience slavering at the mouth, but James Hogg emphasised that although a beautiful environment is desirable, it’s the activities inside that count. He showed how it is better to focus on one activity at a time–not to confuse people with too much sensory stimulation.

And what do the people at White Top do? Well, there are sound-beams, where a person with any slight movement can control the sounds; there is painting; there is dance. But above all there is a lightness, a joyousness, a valuing of what people with disabilities can accomplish, however small. Some of the helpers are themselves artists, in other cases artists come to work with and beside people with disabilities. We saw some of the work they have produced.

James Hogg began by reminding us of what things used to be like in institutions, with a clip from Silent minority, a documentary from the ’70s which showed the meagre rushed lives of people with severe disabilities in a long-stay unit. Like a recent documentary about aid to a Rumanian orphanage, it showed how low morale, penny-pinching and a breakdown in community values can cause institutionalised neglect for people judged not worth bothering with.

You don’t go too far into the world of severe disability without asking fundamental questions about what makes us human, particularly in a world where genetic/social engineering is becoming more and more possible. What a piece of work is a man…yet what to me is this quintessence of dust? Hamlet had to accept both aspects, yet some modern philosophers base their criteria of humanity on self-awareness and ability to choose. (the thinking consumer?) Such criteria may make sense for most of us (though I’d hate to have my humanity judged on some of my more dubious choices!) but are quite dodgy for those who may not know they’re there, and whose only choice may be not to have coke this afternoon. Does our notion of humanity stretch to them, or would we secretly like them tidied out of the way–along with beggars and other intractable blots in a manicured world?

James Hogg challenged this limited view of humanity. He saw people with severe and profound disabilities as providing a value-yardstick for society. How people with severe and profound disabilities are treated is a measure of a good society. He let us hear a parent who spoke of the qualities her son’s disabilities had brought out in her family. Nobody should be written off, she said.

But it’s not enough to refrain from writing off. That approach leads to badly endowed, out-of the-way institutions aimed at keeping people alive, and nothing more. Valuing people means that their environment should be as good as anyone else’s–that they are nurtured not with thin gruel but with creativity too. As the women workers of the USA said: Give us bread and roses too.

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