The current scandal around the care of “Grace” by the Irish State is having a very deep and profound impact on me. It is an issue that is deeply personal as I am a parent of a child with a disability.
Reading that Grace was 11 when she was placed in State care personalises this even further. I can actually see my own daughter's face. Elsie is 12. Would this happen to her if I could no longer care for her?
This case and the treatment of Grace by the Irish system gives me very little comfort for my daughter’s place in Irish society. Sadly, attitudes to people with a disability reinforce to me daily that the only true advocates people with a disability have are their parents.
Remove parents from this equation and then what is left is the current appalling situation which is continuing to unfold in the care system and the Health Service Executive.
Sadly in my view, the evidence strongly indicates that our society does not fundamentally value our vulnerable people and disability is no different. There is no allocation of meaningful resources at any level to support disability and this starts at birth and follows all of the way through life.
Soul-destroying
Parents are left to try to fight for practical support, therapies, services, education and training to ensure their children have any quality of life. It is soul-destroying because you encounter resistance at every step of your child’s journey.
Your child is as important in your life as any parent’s child and you want only what is best for them. You want your child to reach their full potential like any parent, to be given opportunity to shine in life and experience every wonderful thing that parents dream for their children. In order for your child to achieve these things they need support and it is this support that our State does not invest in.
All people with a disability need a holistic approach to early intervention, regardless of diagnosis the approach needs to be multifaceted. This needs to include speech therapy, occupational therapy and physiotherapy as a basic requirement for every child. Currently, this is not easy to source or secure and unless this is done early in a child’s life the potential outcome for the child can be devastating.
Education is the key to integrating people with disabilities into the community and sets the stage for the person’s future. At the moment, children cannot even access preschool with the support they need. There is no co-ordinated approach centrally. In essence, the reality of segregation is beginning to emerge. Once children are eligible for school the problem is at crisis level.
It is a well-documented fact that children with challenges learn in a different way and need input and implementation from various professionals to maximise their learning opportunities.
In class sizes of 30 and very little if any direct interaction with the teacher and a maximum in very few cases of five hours of resource learning this is detrimental.
SNA support is not the answer; this is just to facilitate the practical day to day of a child’s physical presence at school.
Our own personal experience with my daughter was harrowing. We felt by the end of our experience at “inclusion” that our child was isolated, neglected and discriminated against as were we as her parents.
Completely disillusioned
All we wanted for our child was to be educated in our community with her friends and neighbours where she could grow into an adult with the support of our local community and feel like a valued member of society. The reality was very much the opposite.
The entire experience has left us hollow and completely disillusioned and despite every best effort on our part, it has left us questioning the moral fibre of our society or indeed if there is any collective consciousness.
So with no other choice and to give her some future, she is joining the bus journeys that take place across the country every day to the special schools. She is being segregated because we have no choice and we have had to find another box to cram her into.
All this to try to educate her in this broken and archaic system. This will only continue the attitude that Irish society has about people with disabilities, out of sight, out of mind and continued lack of social integration.
In summary, the current system is broken. Gandhi said “the true measure of any society can be found in how it treats its most vulnerable members”, but in the case of Irish society our treatment of people with disabilities in particular is a very damning indictment on everyone.
The State cannot continue to abdicate responsibility at all levels to others. Ireland already has a long, sordid history of neglect and abuse and this is not changing in any meaningful way until there is significant investment in the resources needed to ensure our people with a disability are embraced, supported and valued in a meaningful way from the very beginning.
This needs to start with education, the basis for any meaningful change always starts with education and moulding the views of disability from a very early age. I am wondering when will that time come? Hopefully in my daughter’s lifetime.
Marina Giblin is a mother to a child with 18q syndrome. She works full time.