Guest post by my DH
“Fixing the person is not the challenge – exploring new ways of enabling and honouring human expression is the challenge.”
In his recent statement Michael D Higgins, Ireland’s poet president, has succinctly captured the challenge a modern day ableist society should face up to.
The president’s eloquent comments were made as part of a speech marking the official opening of Ireland’s first academic research centre into Autism based at the National University of Ireland Galway. Widely known for his anti-materialism stance, it is Higgins’ desire for the Irish to recapture the social morals he felt were lost during the Celtic Tiger boom years. The opening of the centre is an indication that the Irish nation is starting to embrace his wish that the disabled population be seen to have ‘equal rights’ and not ‘special rights’.
The opening of the centre provides the opportunity for another consistent voice for an evidence based approach to understanding Autism to be heard in the Irish media. Given that Ireland’s three primary cultural influences are the USA, Britain and Australia, it is no surprise that the media driven scares regarding infant vaccination and pseudo scientific ‘cures’ for autism have gained wide spread credence in Ireland. Furthermore the prominent charity Autism Action Ireland, promoted by Coronation Street actor and former Boyzone star Keith Duffy is often ambiguous at best in its evaluation of quack therapies and established health care practices like occupational therapy alike. It is clear then establishing such a source of reasoned, research based, information for the Irish Autism community is welcome progress indeed.
President Higgins also opened Ireland’s first special needs playground in Navan, County Meath recently, an adapted space specially designed for sensory exploration with full disabled access. The playground is named ‘Is Féidir Linn’ which translates from Gaelic as ‘We are able.’ Built at a cost of €45,000 the project would be easily replicable throughout the country given the cost is not significantly different from that of a standard modern playground. Coming within days of the opening of the research centre, it could easily be assumed things were on the up for Autism services despite the economic gloom in the republic. These presidential engagements however only show a snap shot of a bleaker larger picture. One wonders why more of the hundreds of council playgrounds built since 2004 National Play Policy was launched could not have featured similar facilities. As welcome as the Navan site is to the special schools and disabled community of County Meath, this till leaves every other major city and town in Ireland without any such facilities.
The harsh reality is all is not well within the provision of Autism care in Ireland. The reality of living in the cash strapped republic is that services are stretched to breaking point and waiting lists for children’s health services are long. The backlog of those looking for speech therapy is so long that one relative of mine decided to use her own money to pay for a private therapist for her autistic preschooler. Even then she was faced with a waiting list of six weeks in the private sector. Despite the positive stance coming from the president, he has no legislative or budgetary control over disability services. The attitude of those with those powers is at times very much at odds with the president. This is evident in the action of the so called Department of Social Protection, something in danger of becoming a massive misnomer.
This branch of the civil service has hit the headlines as it is being sued by three mothers of Autistic children who have had their Domiciliary Living Allowance, a payment intended to help those living with disability meet the extra costs incurred in day to day life, cut altogether. The children of all three women were judged by the department to present no greater challenges to their parents than their non disabled peers. Here is a government department that is clearly at odds with the presidential views on equal rights for the disabled. Times may be tight but these women have essentially been judged to have used their children as cash cows: a rather common judgement passed on parents of autistic children. The ‘judgements’ on these children, such as a 5 year old boy with speech and language delays, social impairment and who needs constant supervision care as he is a flight risk and still wears nappies, appear to have been made by mere civil cervants who neglected to even meet the families concerned. Far from being isolated instances these cases are representative of a growing number of families who have had their DLA stopped for Autistic people in their care. Here’s hoping they succeed in their legal challenge and a precedent can be set in the legal system that truly brings the benefits system in tune with the vision of Presdient Higgins.