Some people matter, some people don't
There are many children in this country who are viewed as disposable - we owe them more, says Brendan O'Connor
Miriam Gillick gave up a career in investment banking to look after her son Benjamin, who is nearly six. Benjamin's twin is a bright kid who is involved in sports and activities. Benjamin needs help even to play. He has cerebral palsy, is quadriplegic and can't speak. He uses a wheelchair and will need constant care for the rest of his life.
For now, much of that care will come from his mother. Benjamin's birth and that of his brother was actually reported in the papers in 2010 when the boys arrived early, at just 25 weeks, with the assistance of firemen from Phibsboro. It was a good-news story at the time. Both boys survived. Twenty-five weeks, born at home. Fighters, clearly.
Eleven months later, Ben had a shunt inserted to drain fluid from his brain. An infection developed but went undiagnosed. This kind of infection was a recognised potential complication of the procedure Benjamin had. It should have been caught. It wasn't. Benjamin was left with brain damage and permanent disability. In the High Court last week, Temple Street children's hospital admitted liability, apologised and settled with the Gillicks, an interim settlement of €6.7m, which will help Benjamin get the care he needs for now.
Benjamin and his family deserve all that and more. And that money, though it includes damages and loss of earnings, will not in any way compensate for Benjamin missing out on all the things he will miss out on.
It is interesting to note the price and the cost the courts put on these things. When human error is involved, when there is someone to sue, it is deemed that compensation for a disabled child should run to millions of euro. It contrasts sharply with how we as a society treat those who do not have anyone to blame but bad luck, or God, or twists of genetic fate.
There are thousands of men and women all over the country who give up work to look after children like Benjamin. In some ways, it is perhaps easier for many of these people to accept their fate and that of their child. There is probably less anger, fewer what-ifs, when your child is just born that way.
Maybe you rage sometimes against your bad luck, or your God, and wonder why you, why your child? But at least you don't have the pain of thinking that only for a moment of negligence, a small mistake, your child would be, as they say "perfect".
But roughly speaking, the routine, the effect on your life and the joys and the sadnesses and the difficulties are the same, no matter why your kid is the way he or she is.
And how do we as a society compensate these children and these families for something that the courts deem to be worth millions? Not very well. Ask any parent and they will tell you. They get nothing. And they get less nothing all the time. Access to basic services, equipment, medication, all become more of a struggle every year.
You know why? Essentially because these children don't matter. They are not deemed to matter. They are disposable.
People smile at them in that kind of 'God help us' way and say they are cute. But it is up to the mothers and the fathers to give up work, to take the hit, to look after them, to fight for everything. These children do not matter to the State, but luckily for them, they matter to their families.
Not to harp on about it, but I have one of those children who the State has deemed doesn't matter. We are lucky. We can afford to buy her what the State doesn't give her. We are very lucky with her school and with all the various people in her life. So we can cope with the fact that she has been cut off from her services, that she has no case worker any more to check that she is doing okay, that we are doing okay with her. She doesn't matter. But as middle-class professionals, we matter a bit in the scheme of things and she matters a lot to us, so we make it work. But if I was an unemployed single parent with two or three other kids, I would be having huge trouble coping.
Children with disabilities are not the only ones who don't matter. The spotlight was shone again last week on another class of children who are deemed not to matter, with the RTE investigation into a new foster-care abuse story.
There are 6,000 children in foster care in Ireland. Tusla says they are very well supported. You would hope that the majority of them are, that they get a family and a home where they are nourished, in every sense of the word.
We do know that some of them are not that well supported. We do know that 500 of them don't have any social worker, so no one to check on them, to check they are doing okay. They do not even matter enough for the State to keep an eye on them. Just throw them somewhere, get them out of the way, and forget about them. Nearly 700 of them have no care plan. They don't matter enough for anyone to have a plan about what might become of them or to have a strategy to deal with their physical, mental and emotional wellbeing.
Apparently, there are some children in foster homes who haven't been monitored for 10 or 15 years. Just shoved in there and forgotten about.
It is interesting too how we see these kids. Look at the assumption we all made that the answer to any problem in a home is to move them. We didn't think about what that really meant. We just assume that if there's a problem, we move the child. Solve the problem. And that is, after all, how we see these kids. They are a problem to be dealt with.
Fred McBride, the chief executive of Tusla, annoyed some people last week when he pointed out that moving children is not necessarily the answer, even in the case of abuse. He pointed out that these kids can be traumatised by moving, that the child will often see it as a punishment. He pointed out that even if someone in a situation was abusing a kid, the kid could still benefit from the protective relationship of the family at large as long as the abuser was removed from the situation or dealt with.
And that challenged all our basic assumptions about these kids. Because really, when we casually accept that they should be moved, we are saying they don't matter. We are forgetting that these are real people and that their foster carers can be real families to them. And that these kids often have nobody else in the world who cares about them, many of them not even a social worker who is paid to care about them.
If there was a problem in your house or my house and someone said our children should be taken away, we would obviously argue that taking our children away from their family would only make the problem worse. We would argue that we should try and solve the problem, instead of punishing the victim. But that's because our kids matter to us.
These foster kids, who don't matter? Move them. Move them somewhere else. Solve the problem. And we can forget about them then again. Indeed it was interesting to note that in the case highlighted by RTE last week one of the children ultimately opted to return to the home where the alleged abuse had happened.
Which seems odd until you see him as a human being and you think, of course he returned. As he saw it, this was his home.
And maybe, just maybe, this was a kid who never mattered, who was disposable. But maybe that house and that family was where he felt like he mattered.