‘Every day I grieve for the baby I didn’t bring home’
The only time disability featured properly in this election campaign was in a context of stupidity and ignorance, writes Brendan O’Connor
GRACE Kearney is the mother of Mark Kearney Clifford. Mark is nine years old, and due to brain damage he suffered at birth he is “spastic quadriplegic, cannot speak and is almost totally blind”.
Grace gave an elegant summation of life in their family in court last week
Providing 24-hour care for Mark, who suffers daily epileptic seizures, has taught Grace and Darren “to take every day as it comes and be grateful for the love we are surrounded by”, but Grace said, “it has also left us both mentally and physically exhausted.”
She explained: “Mark’s needs require that one of us is predominantly taking care of him, while the other parent is looking after the needs of our three other children. Simple things like sitting down and eating meals together and bedtime routines are unattainable. It is very isolating when you are so caught up in juggling to be the best carers we can be to Mark, while also trying to function as a normal family unit.”
Grace explained simply, and without moaning, the dichotomy of being a carer for a child with such complex needs. Mark, she said, brings “so much joy and love to our family. He has taught us so much, but his condition has also brought so much pain and devastation. I am grateful for the little boy we have in Mark as he has brought us more love than we knew possible, but every day I grieve for the baby I didn’t bring home. The little boy who should have called Mama and Dada. Every milestone is a reminder of what we lost. We are so proud of Mark and all his achievements and we make sure to cuddle and kiss him every day always reminding him of just how loved he is.”
Mark had complications at his birth, and so, as is often the case in these situations, he and his family are in receipt of substantial settlements to help them give Mark the best life he can possibly have, and to aid in his care. It would be cruel to call these settlements compensation. There is no compensating.
No one would begrudge anything to any of the families that receive substantial settlements in the courts for their children who suffer damage at birth. What these settlements do tell us is what kind of a price the court puts on disability, how much the courts believe it costs to try and give a kid with a disability the best care and the best life possible. And these awards usually run into millions.
But you can’t sue God or nature or fate or chance.
So most parents with a child with a disability are left to their own devices to try and make up the millions of euros worth of care that the courts agree is the price for having a severe disability. And then there are those who have kids with a moderate or a mild disability, who have to make up a few million less in care.
Even though it is nobody’s fault that most kids have a disability, and you can’t sue God, you would imagine we would try to make it up to these families. You would imagine too that we might try to make it up to the people themselves when they become adults. And of course you could argue that we do. We offer, it is alleged, services to help these children, we offer, allegedly, supports for them when they become adults.
But in reality, there is a good chance that these kids won’t get adequate support. Every parent of a child with a disability that you meet will tell you of how they have to fight for anything they get. Nineteen thousand of these children are currently waiting for speech and language therapy. Three hundred of those are waiting for more than two years. As childcare workers reminded us during their strike last week, 90pc of a child’s brain development happens by the age of five. It is a crucial window for kids to learn basic skills. But we let that time tick away. Nineteen thousand kids are currently not getting the help they need with that most basic of skills, learning to speak. We let them wait for a year or two in many cases, while the window of time ticks away. Less of a chance they will ever be able to tell their parents “I love you”, less of a chance they will ever say “Mama” or “Dada”. Less of a chance they will ever be able to express their needs or express who they are.
And the ones who are waiting for services are the ones who are lucky enough to have actually got an assessment. At one point last year in Cork, 864 children were on waiting lists for assessments, and the three services that offer such assessments in Cork all had waiting lists of two years.
No wonder so many people just give up, and do it themselves. They pay money they don’t have to get their kids privately assessed and then they pay money they don’t have to get them services. Bear in mind that in many cases one of the parents will already have given up their job to care for their child with additional needs. A future career doesn’t seem so important when you have the urgency of love and care. Besides which, what future is there for many of these parents, who are, let’s face it, mainly women?
Well, it could be that they become one of the 1,250 people in this country who are over the age of 70, and who care for their disabled adult children. Or they could become one of the 400 people over 80 who currently care for their adult disabled children. And you know the biggest complaint most of those old people will have, as they do their daily routine of caring at 80-something? They worry about dying and what will happen their adult children then. So that’s the potential reality of your future. Giving up your job is no big deal really next to the bigger picture.
But look, you’ve heard all this before. So what’s my point here?
My point is this. How the hell did we just have a General Election campaign for nearly four weeks, where apart from the odd mention, the only substantial discussion around disability was actually a discussion around Catherine Noone and her comments about autism. That was the only way that disability got on the agenda in this campaign, when a woman made stupid, ignorant comments.
But then again, most carers and parents are too busy to be out making noise during an election. So the whole discussion about what kind of a country we want to live in, and what we are going to do about the various crises in our public services, just passes them by.
Because most of those parents, like Grace and Darren Kearney, are just too busy loving and caring and trying to see the upside of what can be a grim, hard road.
As Grace herself told the court: “I can assure you that as parents we are devoted to our beautiful, amazing son Mark and we will do everything in our power to ensure he is happy, loved and cared for, as he so deserves.”
‘Most carers are too busy to be out making noise’