The Rome Experience

Veni Vidi Vici – We came we saw we conquered!

When the Clare Inclusive Research Group set its sights on the target of presenting at this year’s major Learning Disability event, the I.A.S.S.I.D. European Congress* in Rome, we thought little of the kaleidoscope of impressions the trip would embed in the mind’s eye.

The location itself where the Latin temperament transforms city centre traffic into a multilane slalom against a backdrop of ancient ruins, the Colosseum, the Forum and the Palatino, the Vatican City itself replete with the iconic dome of St. Peters.

The culinary delights and fine wines; the hospitality of the Sisters of the Cross at our Villa Maria Pia guest house, the welcome of Br John O’Shea at the Brothers of Charity International H.Q., the breath taking entry to the 2000 year old Temple of the Pantheon through its original bronze doors, to wonder at what is still the world’s largest masonry dome. It was as though the coins of hope we all threw into the Treves Fountain were already bearing fruit…

Such sights and delights, to be properly appreciated have to be earned. Work for both our congress presentations originated two years back when “Access” and “Relationships” emerged as key priorities for the group when they spoke of the hopes and challenges of their lives. Most recently Helena MacInerney from Ardkyle and Mairead Moroney a native of O’Callahans Mills joined forces with other “Access Challenged” members of the community to make an audit of the facilities of Shannon Town.

In their team for “Fáilte? Welcome? The Shannon Access Project” were wheelchair users, electric scooters, parents, toddlers and senior citizens. Congress delegates were interested in the impressions of the researchers themselves, their interaction and appreciation of each others’ perspectives.

“Giving Time” was one Power Point slide attracting attention. Researchers noted how typically in shops, people were often “caught up in their own lives”. “You see someone in a shop standing back and you just step in front of them” unaware that people with a learning disability can be “shy” (and) “not confident”. Others spoke of being “afraid of something they don’t understand”. Involvement with people in research from different walks of life was ultimately transforming. “It changed me. It made me think again”

Natalie Groznya, from the Down Syndrome Association of St. Petersberg congratulated Mairead and Helena after their presentation, “It’s a tremendous inspiration to see your work. You don’t realise but we can only dream of doing what you’re doing now.”

Our Relationships presentation “Mum, I love you but I want to be with my girl” was equally well received. Explaining how we’ve used drama to get people talking about their hopes and dreams, Miltown Malbay researcher, Ger Minogue, spoke of how important it had been for his own confidence and sense of self worth to be involved in this work.

Oliver Koenig of the University of Vienna observed, “In the German speaking world we have little evidence of this level of learning disability participation. It seems in Ireland this has really taken off. As Patricia O’Brien (University of Sydney, Australia, Centre for Disability Studies) told us yesterday, you have the “wow factor”. We are impressed… but also a little jealous!”

It should be acknowledged that, for whatever the reason (the still close-knit communities, the gift and reputation for storytelling?) the Irish contribution, particularly in this area is substantial and growing. Representatives with a learning disability promoting their own views, telling their stories and being positive contributing citizens, is attested to by authorities beyond our own shores as “leading the field”. With so much despondency in other areas of national life this achievement is worthy of celebration.

Looking to the future the Clare group talked of interest in following Dr Darren Chadwick’s example of “work with families” at Trinity with a similar study of our own, involving parents as co-researchers to help build and develop further bridges of understanding. More immediately a summary presentation of our Rome Experience will be featured at the Brothers of Charity 12th National Advocacy Conference at the Clare Inn November 16.

In conclusion, we would also like to pay tribute to all the people who made “The Rome Pilgrimage” as Helena christened it, possible…

The services of the Brothers of Charity particularly those based in Shannon from whom support researcher Debbie Brown emerged as a prized chanteuse. She was a late replacement for the temporarily incapacitated Trish Dillon who did Trojan ground work for the Shannon Access project. Thanks as well to volunteer supporter Maura Lynch of Lisdoonvana, whose passion for our work developed with each passing day.

To Dr Edurne Garcia who headed up Trinity College’s “All We Want To Say, All-Ireland Inclusive Research Project” at which both Ger Minogue and Mairead Moroney as researchers and myself with a supporter’s perspective, presented at the Congress.

To our own Kathleen Ryan sidelined with illness back in Quilty, whose gift for drama and storytelling mined from her own experience but knitted together with those of others in other institutions down through the years, inspired our Relationships research and interactive dramas.

Finally to the Rome Research team themselves, Ger, Mairead, Helena, Tommy Kenny and Marie Deely for their serious application to the work in hand and their determination to have themselves and their ideas taken seriously. They seized this chance of a lifetime in the Eternal City, to create a memorable impact with a long term view.

A researcher with a learning disability from the U.K. was quoted as saying “Life is like watching a really interesting movie where lots of amazing things are happening to everyone else but me”. By their example and through their experiences Clare researchers are beginning to demonstrate the reality of a different, more inclusive more exciting world view. In it people are being valued for their distinctive individual perspective. They are contributing towards the creation of  personalised services of choice for future generations of people living with an intellectual disability all around the world.

Rob Hopkins  – Research Officer Clare Brothers of Charity

* The 3rd I.A.S.S.I.D (International Association of the Scientific Study of Intellectual Disability) European Congress “Integrating Bio-medical and Psycho-Social-Educational Perspectives”

20-22 October 2010