“To Know More To Be More and To Do More” - Oscar Wilde
Advocacy conference shows off the talent and ambition of national advocates.
Minister Katherine Zappone calls for a “vibrant, inclusive and tolerant society”.
National Platform and Inclusive Research Network show research in Homes and Support asking for more choice, support and control.
Second Day Mini Arts Festival showcases Dance advocacy and “Advocacy Without Words” 3 minute.
challenge, award winning film Silent Moves and Time With Larry film.
Minister Zappone salutes the work of self-advocates in changing the laws on sexual relationships.
With a crash of 40 tribal drummers in shades and a parade of banners from the six regional services roared on by their partisan supporters, the 18th Annual conference of self-advocates exploded into life. Weeks of painstaking preparation came to fruition with a stirring video address from pioneering campaigner and now Minister for Children and Youth Affairs Katherine Zappone. Quoting Oscar Wilde, she urged the gathering that “Our ambition should be to rule ourselves… true progress is to know more and be more and to do more.”
But it was inspiring presentations from people with disability who held centre stage and made the strongest impact. “We’re just like you”, Brendan Reilly from Tallaght told the 360 delegates at The Rising 2016 Conference at West County Hotel Ennis, Co. Clare, the annual gathering of self-advocate groups from Ireland’s largest intellectual disability service provider, the Brothers of Charity.
Reflecting on his recent wedding to sweetheart Orla he candidly brought us through the process, from proposal: “I started massaging her shoulders. Once she was relaxed I popped the question ‘Will you marry me?” to wedding day: “The sun was splitting the sky. We got lots of support from family and staff” and night: “We had so much fun we didn’t even get to bed. We had a walk on the beach at 7am.”
Beyond the intellectual disability world this might seem an unremarkable story. According to the 2006 Census, about half of the general population aged 25 to 44 is married. To this audience of self-advocates with intellectual disabilities or, as many independent advocates prefer to identify themselves, people with extra support needs, this engaging homily to marital bliss was a battle cry and a challenge to all Brendan’s peers within and beyond the doors of the conference hall.
That boundaries of identity of people with extra support needs are being breached in Ireland, in the same momentum that has liberated gender through the marriage referendum, was attested to by Minister Zappone. She lauded the conference themes of Love, Freedom and Equal Rights for everyone… the rising tide of ambition of people with intellectual disability for placing itself in the context of the founding fathers of the Easter Rising. Identifying conference committee self-advocates, Ger Minogue and Brian Hogan from Clare and Galway advocates Christina Burke and Martin Dooher for their “inspirational efforts” in working on her private members’ “Right To Love” bill from 2013, Minister Zappone went on to praise the breadth, scope and ambition of the conference and its presenters, urging those attending to continue working towards a “vibrant, inclusive and tolerant society which supports all children, equally, to realise their potential and become, fully participating citizens.” Minister Zappone confirmed the Government’s ambition to ratify the U.N. Convention on the Rights of People with Disability in accord with these sympathies and to repeal section 5 of the Criminal Law (Sexual Offences) Act 1993 by the end of 2016.
And here in the conference hall in the persons of Brendan and Orla O’Reilly were the flesh and blood Joseph Plunket and Grace Gifford, rallying their oppressed brothers and sisters, marrying their promise to the future with fellow betrothed couple William and Mary Seymour from Bantry, West Cork.
Both couples gave an insightful account of what might lie in store for spouses considering taking the plunge. What if children came along? “We weighed up should we have children or not. They could be a problem. We looked for advice and decided, ‘No, we won’t’” said Mary. Brendan and Orla weren’t so sure… “it’s all part of life. We’ll have to see what help we might need. No one brings up a child on their own. My mum’s been very supportive,” says Orla. Brendan added, “If the child has a disability? We’ll love it and take care of it just the same as any child.” Their candid opinions offered during an interview with Clare presenters Ger Minogue and Orla McMahon and media consultant co-host and RTE broadcaster Ciana Campbell, set the tone for a clearly advocate-led and presented event.
Continuing the theme of ambition to occupy places in mainstream life, Aine Carey and Kate Crotty from Streetwise, the Clare Brothers of Charity young people’s support service, presented on graduating on a Q.Q.I. Level 4 programme at Mary Immaculate College, Limerick. Aine pointed out “My brothers and cousins all went through the college experience. I wanted to do the same”, and the benefits of this involvement: “Whenever I go on a trip anywhere now I make a point of visiting art galleries and museums. It’s given me a deeper understanding of life around me.”
Challenging the misnomer of the Intellectual Disability label which implies “unable to learn”, people with extra support needs who have additional communication challenges, featured in a project set by the conference committee earlier in the year called “The Three-Minute Short Film Challenge”. These films punctuated the programme, and were then broadcast on Day Two collectively in a mini-arts festival as “Self-Advocacy Without Words”. Minister Zappone noted their inclusion “provides us with a deeper understanding of what it is like to live with these challenges”.
Advocates emerged from The Rising films as….
• movie stars: lead actress Karen McDonnell introduced her Irish Times award winning comic movie, Silent Moves;
• as satirical comedians: Galway self-advocates drew howls of laughter for their spoof RTÉ News expose outing service users kissing in the park and, shock-horror, a wedding proposal live on camera;
• as choreographers and workshop hosts: Speckled Hen Theatre Co. showcased self-devised multimedia performances and led the audience in an impromptu dance warm up;
• as film makers; Patrick Meehan propelled us into a world of camera phone adventures;
• as wheelchair mountaineers: John Tobin amazed us as the centre of a 30-strong volunteer effort to realise his dream of being the first wheelchair conqueror of Croagh Patrick;
• as ‘eye-gaze’ adepts: Waterford advocates led us to the intersection of communication technology and cyberspace with a demonstration of computer responses triggered by the simple act of gazing at particular on-screen images;
• and finally as inspirational poets: communication-challenged autistic artist Larry O’Brien’s film “Time With Larry” brought us on his incredible journey from institutional hell to idyllic heaven, a stone’s throw from the West Clare section of the Wild Atlantic Way as he urged us all to “pray for ownership of your dreams”.
Not content to mesmerise with artistic, educational, aspirational and technological feats, the conference set about being the rising tide for all boats, seeking delegate opinions about these ordinary and extraordinary lives with provocative feedback queries following each presentation.
At the foyer entrance, the National Federation of Voluntary Bodies launched their innovation VoiceBox – a video diary studio recording views on a hot disability topic: “What does HIQA mean to you?.”
Finally came national and international inputs to round off the ambitious event. With advocates Joe McGrath, Ger Minogue and Brian Hogan from Clare playing central roles in the National Independent Advocacy Platform and the Inclusive Research Network, research presentations about Homes, Housing and Support gave further evidence of the emerging authoritative voice of people with extra support needs. This was given an international context with a filmed greeting from the organisers of an equivalent national event organised by Austrian self-advocates taking place in Vienna over the same few days. Through their research work, the Clare advocates had been exchanging ideas common to both countries, in particular regarding capacity laws and their respective governments’ commitment to address laws covering intimate relationships.
While it is unlikely that the Capacity Act of 2015 and the present law relaxing the decriminalising of sexual relationships for people with extra support needs will lead to a spike in marriages and cohabitations within the intellectual disability populace, these public declarations of the new reality do seem to herald the dawning of a new era in the way people see themselves and are in turn viewed; an era driven by the achievements of individuals and the responsive support of family members and care givers as well as the changes in legislation. The “vibrant, inclusive and tolerant” society raised as a hopeful aspiration by the Minister as the conference opened seems to be a step nearer following the Rising of 2016.
The organising committee of the event wishes to acknowledge the patronage of Brothers of Charity Ireland Services for continuing to support the event; the volunteer work of outstanding advocates, both presenting and working towards art projects around the event; support staff and senior management who all pulled together to make the conference a great success (it was hailed by one independent observer, senior coordinator for Inclusion Ireland’s Sligo operation Barry Lynch as “a sensational, potentially life changing event.” In twelve months’ time the conference moves to Galway, and self-advocates there will take up the challenge and a new chapter of rising ambitions will be written.