Inclusive researcher wages war on exclusion

Rob Hopkins, Research and Communications Officer, Brothers of Charity Services, Co. Clare (First published in the Clare Champion on 26 July 2011)

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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, an activist with Down Syndrome, from County Clare, was waging a different kind of war on Israeli soil—a war against exclusion for people with learning disabilities.

Miltown Malbay native Ger Minogue, a founder member of the Inclusive Research Network in Ireland and the Clare Inclusive Research Group, and the network’s support coordinator Rob Hopkins of Clare Brothers of Charity were left grim-faced for two and a half hours as airport operators screened cases, wash bags and gift-wrapped items, swabbing every nook and cranny in search of traces of explosives.

Learning from the past, shaping the future

However, our mission had other walls to breach, namely the erstwhile ivory towers of the learning disability research and services establishment. In this regard we were met not with resistance but with an open drawbridge and an invitation to join the top table. The Beit Issie Shapiro International Conference on Disabilities (hosted by the Zion state’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 pariah treatment at the airport 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, all eager to learn about research conducted by people with a disability. However Ger was none too impressed by British Ambassador Matthew Goulding, when he claimed Ger as ‘one of our own’ at the event launch. ‘That was hard to swallow. Doesn’t he recognise an Irish accent … and a Free State Irish man?!’ he queried.

A crescendo of inclusion

Affront soon gave way to appreciation, as Batsheva, the country’s leading modern dance troop, mesmerised invited guests and sponsors with their disability-inspired celebration—rhythmic contortions and twists that built 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 razzamatazz, a feature of the conference which demonstrated a finely-tuned PR relationship linking government patronage with social entrepreneurship, backed by big business and high finance. Following the opening address from local mayor and Knesset member, Zeev Bielski, who welcomed patronage of the Ministry of Social Affairs and sponsorship from Bank Hapoalim (Israel’s foremost financiers), a Glee-style troop of fresh-faced kids chorused Israel’s current favourite pop song—and the conference was underway.

Disability and poverty

First up was the eminent academic Eric Emerson, head of Disability and Health Research at Lancaster University in the UK, and Professor of Family and Disability Research at Sydney, Australia, with a presentation which was a timely reminder in these globally straitened times that 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.

And 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 Dublin, with a national project of inclusive research in Ireland in 2006/7. She highlighted her collaborative work in County Clare, with research priorities and topics decided by people with a disability themselves—a a garden project, a community cafe, and an individual life story—which led 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 Dublin since 2008.

The influence of the Irish Inclusive Research Network

We then pointed up the influence of the Irish Research Network in Europe with the establishment of an inclusive research group in Finland, following their study visits to us, a raft of pan.European exchanges currently in train over the next 18 months and our own 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 have 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!’

Where are the disabled presenters?

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 person with Down 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 Program’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, promoting her translation business for simplified accessible information; a young man with acquired brain injury who spoke powerfully about his research on relationships amongst his peers and their desire for intimacy; and a co-tutor in a mainstream school who gave eloquent testimony to his ability to educate in a manner that defied his label of ‘learning disability’, although he could neither read nor write.

Dr Dana Roth, Research Coordinator 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 battlegrounds 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 [sic] of a genuine agent for change in the war on exclusion!

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