‘It was either rage or oblivion; I chose rage.’ That’s how Cathleen O’Neill explains her (most recent) campaign in support of her son Sean (see page 14). The same words must apply to the stark choice faced by others before they put their heads above the parapet to demand appropriate services for their child with a disability–Annie Ryan, Marie O’Donoghue, Kathy Sinnott–and many more. At great personal cost to themselves, they have battered against the barriers firmly placed against the rights of Ireland’s vulnerable citizens. Probably, each of them has heard herself referred to as ‘strident’, ‘vexatious’, ‘not that woman again!’ (aside: There is a good-humoured group of disability-mums in the US who call themselves ‘Mothers from Hell’. I’ve got the tee shirt!) Those of us with less perseverance and energy shelter in the coat-tails of these ‘militant’ advocates. We admire them and, a bit shamefacedly perhaps, we hope to share the gains they have earned through their public campaign or legal action.
By the time this is read, the news coverage of the Sinnott case will have subsided and counsel for the state will have decided whether or not to lodge an appeal to the Supreme Court. It is devoutly to be hoped that bureaucratic Luddite mindsets will finally be abandoned, and that government departments, and their respective ministers, will now end ‘the state’s breach of duty’ (Mr Justice Barr) to vindicate the constitutional rights of people with disabilities to education and care–‘based on need, not on age’.
Mr Justice Barr’s firm and humane judgement, and that of Mr Justice O’Hanlon in 1993, are valuable cornerstones in the advancing human rights agenda in learning disability in Ireland. We await a wider statutory framework which will obviate the necessity for further individual court proceedings taken at such high-stress and emotional costs to family-plaintiffs.
Bob McCormack has compiled our current issue on quality systems in Irish services. He did a superb job getting colleagues from across the country to contribute to the feature. In essence, every system is designed to evaluate the effectiveness of our communication and the efforts which result from it. Recently, I was privileged to sit in on a Personal Outcomes training day. It did my heart good to see the enthusiasm of frontline staff members; they knew they were committing themselves to additional time and effort to put new approaches into practice with their clients.
Quality services start with communication–staff members sharing their insights and concerns; administrators and managers learning from frontline expertise; service users and their families being heard and listened to. Returning to the Sinnott case, Mr Justice Barr emphasised the state’s duty (and that of its contracted service providers) to ‘collaborate’ with families in the planning and provision of services. Opportunities for continuous assessment of services by their staff, service users and client families are essential, and much preferable to the end-of-year-exam glossy annual reports–necessary as those may be for public relations and outside assessors.
If the National Federation were ever to sponsor a song contest, I’d enter a plagiarised version of the Phil Coulter/Cliff Richard winner, Congratulations. Mine would go: ‘Com-mu-ni-cation and in-for-ma-tion, la la la la la la la la la la ….’
Be grateful that technology hasn’t brought sound-publishing to the magazine, yet!