Officialdom is trying to solve the wrong problems
Despite being told she would never pass an exam, my daughter who has Down Syndrome achieved 93pc in her Leaving Cert, writes Tom Murray
OUR daughter Eleanor will turn 21 on Wednesday. She has Down Syndrome. Officialdom in all of its guises does not recognise Down Syndrome.
It insists on trying to attach additional nonsensical labels to those living with Down Syndrome before they can access supports or services (or, more accurately, as most experience it, be denied access to individualised and appropriate supports and services).
It will do almost anything other than provide supports and services based on an assessment of the uniquely individual needs of the person living with disability.
In the comfortably unaccountable and non-transparent world of the public sector, it carries on designing and implementing nonsensical bureaucratic systems and programmes for those with disability which are ineffective and, in reality, are a much greater drain on the taxpayer and on the public purse than doing the right thing.
Nobody is held accountable for this waste. Brendan O'Connor's piece last week about his daughter Mary, who is four-years-old and has Down Syndrome, reminded me that nothing has changed since Eleanor was the same age.
Eleanor had to deal with a lot of nonsense, and more, in getting to where she is now with her life. For example, when Eleanor was transitioning from primary to secondary level education a meeting was convened involving the National Council for Special Education (NCSE), The National Educational Psychological Service (NEPS) of the Department of Education and Skills (DES), the special education support service in the school and myself and Elizabeth as Eleanor's parents.
The purpose of the meeting was to determine what level of support Eleanor would get in secondary school. During the meeting I was asked what my expectations for Eleanor in secondary school were. I replied that I hoped she would progress through secondary school with her peers, enjoy and benefit from the experience, sit and pass the state examinations and emerge with the qualifications which would allow her to progress to third level or to the world of work. The response I got was remarkable.
I was told: "You will need to moderate your expectations, Mr Murray. No child with Eleanor's level of disability has ever sat, never mind passed, a state examination". Thankfully Eleanor's school ignored this official nonsense.
Eleanor followed the normal Junior and Leaving Certificate cycles. She obtained two As and four Bs in her Junior Cert. She did Transition Year which was hugely helpful to her. She achieved an overall mark of 93pc and a "distinction" in her Leaving Certificate Applied Examination. This was one of the best LCA results in the country. She did the normal range of subjects including languages (Irish and French) and maths.
Throughout her education, Eleanor followed the "normal" path. She went to mainstream montessori (pre-school), primary and secondary school. To do this, she needed the whole-hearted support of the schools, teachers and support staff involved at each level. Officialdom had to be fought at every step of the way as did societal norms and expectations.
Had Eleanor followed the directives of officialdom and societal expectations she would, at different stages, have been diverted into a Special School, have dropped subjects being done by her peers, especially languages and maths, or would have otherwise under-achieved relative to her ability or potential. The outcomes from education available to others would have been denied to her.
The key to her success has been being surrounded at each stage by people who see the person and the student first and then the disability. Unfortunately officialdom and society see things the other way around.
Eleanor has now progressed to third-level education. She is getting great support. Again, she is in an environment where she is regarded first and foremost as a person and in a regime which is determined to deliver a successful outcome for her.
Eleanor has also progressed to the world of work. She has a part-time job. Again, her experience here is atypical and quite remarkable. She is treated with respect as an employee and colleague. She is expected to perform her duties just like any other member of staff.
If officialdom and, indeed, elements of the voluntary/ service provider sector, had their way, Eleanor would not be where she is now with any aspect of her life. That is a tragic commentary on those who should be on her side but, in reality, have to be fought every step of the way. I do not believe that officialdom and the voluntary sector deliberately set out to fail people like Eleanor and Mary.
The reason they fail so splendidly is that they start in the wrong place and, therefore, keep trying to solve the wrong "problem". Their paradigm of intervention is that there is a deficit in Eleanor or Mary that needs to be "corrected", moderated or otherwise be compensated for. This "deficit in the person" model leads to huge waste in wrongfully targeting public and voluntary funding.
For example, in the world of education there is massive expenditure aimed at the perceived "deficit" in the Eleanors and Marys of this world which leads to all sorts of misdirected assessment, pedagogic, supports and programmes which are unfit for purpose and which fail to deliver quality outcomes.
We need to turn that deficit paradigm on its head and recognise that the real deficit is in an education system which is failing to deliver quality inclusive education for all of the student population including those with a disability.
Until we target the systemic deficit, we will keep trying to solve the wrong "problem". The same can be said across a wide range of statutory and voluntary interventions for those living with disability from societal inclusion, to the world of work, to sport etc.
We really need to replace the disability paradigm with an ability paradigm. We need to stop trying to change the person to suit the system and to start changing the system to suit the person. Sometimes the simplest things are the hardest things to do.
To those in Eleanor's life who see/have seen the person, the student, the friend, the colleague, the swimmer, who focus on outcomes for her and who value who she is and can see past the nonsense associated with the labels she is burdened with, I doff my cap. You help make her what she is despite the "nonsense". I hope Eleanor's story will encourage parents and supporters to keep fighting the "nonsense" in whatever setting it is encountered.
Tom Murray is a past National President of Down Syndrome Ireland, a former Chairman of the National Council for Special Education and an ex-member of the Management Committee of the National Institute for Intellectual Disability based at Trinity College, Dublin.