Inclusive researcher wages war on exclusion

ON the day an Irish Palestinian sympathiser was being detained and handcuffed at Tel Aviv’s Ben Gurion airport for trying to enter the occupied territories, a Down’s Syndrome activist from County Clare was waging a different kind of war on Israeli soil, a war against exclusion for people with learning disabilities.
Miltown Malbay man, Ger Minogue, founder member of Inclusive Research Network in Ireland and the Clare Inclusive Research Group and its support co-ordinator, Rob Hopkins of Clare Brothers of Charity, were left grim faced for two and a half hours as airport operatchicks screened cases, wash bags and gift wrapped items swabbing every nook and cranny in search of traces of explosives.
However, the mission had other walls to breach, namely the erstwhile ivory towers of the learning disability research and services establishment. In this regard we met, not resistance, but an open drawbridge and an invitation to join the top table.
The Beit Issie Shapiro International Conference on Disabilities, hosted by Israel’s foremost non-governmental provider of disability services, summoned us to the presentation podium. There, alongside Professor Kelly Johnson, director of research and policy at Bristol University’s Nora Fry Research Centre, we delivered a plenary address at the launch of a trans-disability research event entitled Learning From the Past, Shaping the Future.
Our treatment at Ben Gurion contrasted starkly with the reception at the conference’s gala opening. Warm embraces were the order of the evening and we were feted by diplomats, government officials and the heads of faculties at the country’s leading universities eager to learn about research conducted by people with a disability.
Batsheva, the country’s leading modern dance troop, mesmerised invited guests and sponsors with their disability-inspired celebration; rhythmic contortions and twists that build to a crescendo of inclusion, with each dancer selecting audience members to join the performance in a feast of improvised emulation. Ger enthusiastically obliged. 
Next day, as the conference got under way, we were treated to more razzmatazz, a feature of the conference, which demonstrated a finely tuned PR relationship linking government patronage with social entrepreneurship backed by big business.
The opening address from local mayor and Knesset member, Zeev Bielski welcoming patronage of the Ministry of Social Affairs and sponsorship from Bank Hapoalim was followed by Glee-style troop of fresh faced kids performing Israel’s current favourite pop song and the conference was underway.
First up, the eminent academic Eric Emerson, head of Disability and Health Research at Lancaster University in UK and Professor of Family and Disability Research at Sydney, Australia with a timely reminder that in these globally straightened times, poverty and learning disability are a potent combination exacerbating up to fourfold the disadvantages typically visited upon people with disability in terms of life choices, life chances and life expectancy.
Then it was our turn to take centre stage. Our theme From Research About Us To Research With Us was led by Professor Johnson who outlined her work on a Marie Currie fellowship at Trinity College, a national project of inclusive research in Ireland in 2006/7. She highlighted her collaborative work in County Clare with research priorities decided by people with a disability, themselves identified in three topics – a garden project, a community cafe and an individual life story leading to three publications.
Ger and I then spoke of the evolution of the enterprise locally and nationally, focusing on relationships, data evidenced by research drama presentations, No Kissing and Leaving Home and the Inclusive Research Network national publication, Relationships and Supports Study (2010). We traced the development of research training and support offered by the National Federation of Voluntary Bodies and the National Institute of Intellectual Disability at Trinity College since 2008.
We then pointed to the influence of the Inclusive Research Network in Europe with the establishment of a network in Finland, following their study visits to us, a raft of pan-European exchanges currently in train over the next 18 months and our presentation in June to the Scottish Inclusive Research Network conference in Perth where their recently formed network were presenting findings commissioned by the Scottish Assembly.
Finally, we showed how inclusive learning disability research is bringing the voice of a vulnerable and neglected section of the community to the gates of the corridors of power in Ireland. Through consultations with the Law Reform Commission, we’ve been discussing the new legislation on sexual offences and capacity laws regarding people with a learning disability, which are currently being drafted.
A penny, or was that a shekel, seemed to drop during the course of our report, as we stepped down from the stage.
“I was mobbed,” mused Ger afterwards. “ I felt like Daniel O’Donnell.”
Disabled and able delegates queued to shake hands afterwards. “Thank you, you’ve made a great impact.”
Following a symposium on inclusive research strategies, Ger pressed home the advantage of his recently acclaimed status. “There were some very interesting presentations in this session but as a representative of a person with Down’s Syndrome from Ireland I’d like to ask,  ‘Where are the other people with disability who should all be here presenting’?”
His point was well made. Despite the programme’s bold declaration that “the crux of this conference will be a body of research developed by individuals with special needs” representatives themselves were thin on the ground. However, those who were there were exceptional and inspiring; a mother with physical and learning disabilities, Oran Rooney, with two children at college, promoted her translation business for simplified accessible information; a young man with acquired brain injury spoke powerfully about his research on relationships amongst his peers and their desire for intimacy and a co-tutor in a mainstream school, gave eloquent testimony to his ability to educate in a manner that defied his label “learning disability” though he could neither read nor write.
Dr Dana Roth, research co-ordinator for the Shapiro Foundation thanked Ger for bringing the deficit in representation to everyone’s notice.
“Five years ago, we had this conference and there were no people with disabilities here. So this time is an improvement, there’s a trickle of people and you’ve given a plenary session, that was unthinkable only a few years ago. Next time there could be a flood of disabled researchers.”
“Not there could be a flood,” Ger corrected her, “There should be a flood”.
Back in Ireland, fresh battle grounds are opening up with cuts to services threatening to undermine the credible achievement of the Inclusive Research Network as it seeks to fulfil its potential as an independent representative group of learning disabled “experts by experience” to match longer standing national advocacy organisations in the UK, North America  and Australasia.
However, Ger remains optimistic. “If it’s about us then we should be involved. It’s all in the United Nations Convention on Disability. If Ireland wants to pass the treaty, representatives with a learning disability have to be put in place.”
So maybe we weren’t randomly singled out for special treatment by the airport authorities after all. Maybe the finely tuned antennae of Tel Aviv security officials had effectively detected the true metal of a genuine agent for change in the war on exclusion.
Rob Hopkins is the research
and communications officer with
Brothers of Charity Services in Clare