Mention the European Union and the phrases ‘debt crisis’ or ‘meltdown’ might spring to mind, swiftly followed by “contagion”. Try ‘learning disability” and its my bet ‘marriage’, ‘lifestyle choice’ and ‘international leadership’, weren’t your top three associations.
However, I’d like to buck the trend of common associations and describe a disability services exchange called Gruntvig, which work colleague Ger Minogue, a native of Miltown Malbay and I undertook to Finland’s majestic capital, Helsinki.
Grundtvig EU programmes are named after 18th century Danish educator Nikolaj Grundtvig, who placed practical experience on a par with academic theorising. They are designed to promote awareness and the exchange of best practice working models between the participant countries. In his own presentation, Ger proudly proclaims himself to be ‘a person with Downes Syndrome’ and goes on to speak of his developing reputation as an ‘inclusive researcher’; that is, a person with a learning disability who undertakes and presents research findings from a disability perspective.
In this, he has developed a national and international profile, working on and presenting findings from Clare’s own Inclusive Research Group and those of Ireland’s national research body, the Inclusive Research Network, on whom he was recently elected public relations officer. Key issues covered have been relationships, the right to exercise choice over money, work, social life, where people live and with whom. These are fundamental rights enshrined in international law but routinely contravened around the world.
With his dedication to research work (‘until the day I die!’) and his gift for oratory he has campaigned for the reform of relationships’ legislation and made keynote addresses and presentations in Cape Town, Rome, Tel Aviv, most recently at the inaugural Inclusive Research Conference at Limerick University in May and now as a delegate to this European exchange in Helsinki alongside representatives from France, Germany, Austria, Slovenia, Ireland and Finland.
In a series of exchanges called ‘The Journey Towards Belonging’ each country has been sharing their experiences creating, delivering and being supported by services at key transitional moments in life from birth, through schooling, to college or work; from family home to community housing to personally rented apartments.
Such an exchange challenges preconceptions about the European Union. The EU becomes not just a market place where power brokers call the tune and the populace dance to it, it can and does promote an ideal; an opportunity to develop understanding between culturally diverse people who come together to learn with each other.
This exchange enabled our Irish delegation to showcase positive role models through presentations by people themselves, highlighting people living courageous and fulfilling lives, people who are actively campaigning to broaden the understanding of the roles and potential of people with a learning disability.
Our exchange co-ordinator, Alison Harnet, from the National Federation of Voluntary Bodies, addressed a gathering of Finnish medical practitioners about further “best practice” work.
Her own research looked at the experience of family members, doctors and service providers in the crucial first months when a child with a disability is born to a family; about the need for empathetic communication, emphasising capabilities rather than inabilities, a positive outlook pointing to increasing opportunities and challenge the negative stigma that traditionally attaches itself to families of people with a learning disability.
Illuminating these opportunities, wheelchair user and inclusive researcher, Martin Dooher, spoke of newly discovered freedoms; living in his own apartment, managing his own life, engaging his own supports to get ‘out and about’. He explained his role as an ‘expert by experience’ on a planning group of service providers and civil servants, how his courageous struggle is helping pave the way for others in his situation to get the enabling support they need.
Mary Seymour from Bantry spoke informally of her married life to William saying “he’s a dote”.
He wasn’t with her to mark their seventh anniversary in Finland however. “We’re going together to Edinburgh, to celebrate properly!’ And married life? “Its great to have someone to share things with. I could never go back to living in a community home,” Mary said.
We learned from our European partners; from Wolfgang’s practical skills-based course within mainstream schools in Germany, where from an early age children are supported to care and take responsibility for themselves, to develop self-esteem and raise the expectations of parents who might tend to over protect and disable through kindness. About Uri the Slovenian gardener who has come from a huge institution of many hundreds of people to live in his own community house and be a leading advocate in his local community and Leopold from Austria, who transcended the language barrier between us with his gift for mimicry. His shoulder massage technique could easily translate into a career in one of the lakeside sauna spas we were treated to by our gracious Finnish hosts.
As we dropped back through the blanket of cloud over the Emerald Isle we pondered our days in the world’s second most northerly capital where daylight (and of course the invigorating company) had us wide awake at 2am with the sun blazing back up again at 4.30am.
Ger took himself on a further flight of fancy
“Ireland and Finland have a lot in common. Their land was very green, covered with trees and water. People are the same all over the world; everyone wants a nice home, a job, friends. However, one thing I thought was good now, as a person who’s into soaps in a big way, we met people in Finland in their own soap opera on national TV. Wouldn’t that be a good idea now, just part of the cast like Fair City? That and a bit of love interest, maybe a marriage… like our friend Mary Seymour,” he mused.
Rob Hopkins is a research and communications officer with the Brothers of Charity.