Visionary campaign opens doors to students with intellectual disability

IN the early 1990s, a long time ago, two women decided to pay a visit to Trinity College in Dublin.

Neither of them had been a student there, but it seemed a logical choice because at the time there was some publicity about the college’s attitude to access. The women had one simple question to ask: if you believe in access, what about access for students with an intellectual disability?

Simple, but revolutionary. The two women who asked the question had just been through a dispiriting journey around Ireland.

Mary Boyd and Frieda Finlay (yes, related to this column by marriage) were (and are) mothers of young adults with an intellectual disability, or mental handicap as it was called then. As their children reached adulthood, both women realised there seemed to be few, if any, services available for them.

So, with several other mothers, they decided to investigate the level and quality of service available throughout the country for young adults. When they started their research their primary expertise was that they had had more than 50 years of what we would now call 24/7 experience of intellectual disability.

In their travels around Ireland they found that, essentially, most people with an intellectual disability went to school until around the age of 18. Most were in special schools whose standards varied from extremely good to poor. There was no standardised curriculum, no way of measuring progress, no certificate at the end to prove that the young people involved had reached any standard at all. And after they left school, if they were lucky, they got a place in a sheltered workshop or training centre.

If they were very lucky, they got a place in a sheltered workshop or training centre with a commitment to ongoing education. But for the majority, such education as there was ended at 18.

They wrote a far-sighted and visionary report called Working and Living. In it, they outlined what they saw as a crisis in philosophy, resources, management, staffing and, above all, political will in the entire area of disability service, and they developed a set of proposals for new structures and management set-ups in the whole area of training and employment.

Many of the ideas they outlined then, and campaigned for at conferences all over the country, are part of the mainstream way of developing training and employment services now. Two of the women, Frieda and Mary, became convinced that they needed to go further, and to concentrate on the area of education. At that time, the idea of a person with an intellectual disability in third-level education was considered absurd. And standards in second-level were patchy at best. Frieda and Mary came to the conclusion that the solution was to be found in a national body, based in a university, that would combine education and research.

Education programmes capable of maximising the potential of people with intellectual disabilities would ensure their integration into a third-level campus. It would enable other students to learn about them. It would enable research to be conducted into the best methods of training and educating people with intellectual disabilities. These methods could then be transferred to other education settings, improving the standards at second-level and opening more doors for the students.

Frieda and Mary wrote all this up in a paper called The Belfield Centre because originally they believed they could persuade UCD to adopt their idea.

UCD, essentially, wasn’t interested, so Frieda and Mary took to the streets. Neither had any experience of public speaking, but they went to every conference they could (“gate-crashing” they called it) and tried to interest anyone at all in their ideas.

They got some support, but an awful lot of scepticism. The most positive response was when they finally got to speak to the dean of studies in Trinity, Prof George Sevastopulo.

Rather than dismiss them out of hand, as some others had done, he gathered some other academics around and began asking questions. Could Trinity do this sort of research? Did the college’s commitment to access extend to people with an intellectual disability? Was there the remotest possibility that there might be something in Frieda and Mary’s idea?

Little by little, the response that started to come back was “why not?”

Several of the academics involved — Noreen Kearney, PJ Drudy, Sheila Greene, Robbie Gilligan, Mona O’Moore — all began to take an interest. Noreen Kearney was the first to take up the cudgels and, in later years, PJ Drudy became the main champion of the idea within the college.

SO the two mothers began a political campaign that led ultimately to a decision by Niamh Bhreathnach, when she was Minister for Education, to allocate some money for a building and a little more for a proper feasibility study. Eventually, and despite a change of government, support for the idea became government policy, and over the best part of a decade the seeds of a national institute took root.

It is now led by a director, Patricia O’Brien, from New Zealand. It is supported by Government and by philanthropy. It is researching and developing best practice. It is gradually building its capacity to disseminate information. It is working with parents (Frieda now helps to run a programme in that area) and professionals.

But most important of all, it is enabling its first cohort of full-time students — 20 adults with an intellectual disability — to undertake the first course of its kind in Ireland, the Certificate in Contemporary Living. Formally approved by Trinity, the certificate is taught over two years and has 10 demanding modules in the social sciences and the expressive arts. CCL students — that’s what they’re called — are full and equal students of the college.

The National Institute for Intellectual Disability was formally opened this week in its own premises near the front gate of Trinity by the Minister for Education, Mary Hanafin. It took more than a decade of campaigning to bring it from the mad idea of two mothers to something that Mary Hanafin described as being capable of making a profound difference.

There’s a lot to be said, isn’t there, for never giving up! At the opening ceremony, they showed a short video about the institute, narrated by the poet and Trinity lecturer Brendan Kennelly. At the end of the video he recited a poem in that warm voice we all associate with him. At first I thought he might have written it about the struggle that Frieda and Mary had undertaken to get the institute established.

It turned out to be a poem, written by one of the students on the new course about the hope and struggle of a college student’s life.

“As one door closes after me I open a door to the future/

Full of challenges and experiences/

Bravery, determination/

The next door I open/

Shows a bumpy road ahead/

And it becomes steeper and harder to walk/

Till I reach the top/

Then I come down followed by a smooth path/

Along the way”.

After he’d read it, Kennelly paused.

“That poem was written”, he said, “by Helen Donnelly. A gifted student.”

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