Wednesday 21 November 2018

Our daughter has a right to an education, like every other child

A capping of new applications for SNAs will ensure that another generation grows up in ignorance of children with special needs, says Brendan O'Connor

I'M glad that Ruairi Quinn feels, as he calls it, "blessed" that he doesn't have a child with an intellectual disability. But I kind of wish he'd have kept his trap shut about that. My wife told me she cried a lot last Tuesday.

My daughter, who happens to have Down Syndrome, was eight months old on Tuesday. And as she celebrated that little milestone, my wife listened to Ruairi Quinn on Morning Ireland talking about his refusal to allow any new applications for Special Needs Assistants for children who need an SNA to function in the education system.

It was the first time in a while she felt that our daughter's birth was a bad thing. When you first get into this business, there's a lot of crying. But then you find that some whole days go by when you don't cry, and gradually it diminishes, as joy and determination and acceptance take over and as love and devotion grows.

It is testament to the excellent services we have access to by virtue of where we live, and to our friends and family, that in the last eight months we have managed to mainly feel blessed to have our daughter. But last week we realised that we are, in fact, not among the blessed. It was the first time my wife felt 'other'. You see, we used to be blessed in the way Ruairi was. And now we are blessed in a different way. And you struggle, when you have a child with an educational difficulty, not to feel isolated from other people. And you struggle not to feel 'other'.

But the worst part of Ruairi Quinn's comments on Tuesday, and the faux sympathetic lip service that he paid to people like my wife -- his heart goes out to her, he empathises with the anguish and the energy that she displays -- is that he was making these comments in the context of throwing my daughter on the rejects pile.

But we don't want Ruairi Quinn's "empathy". We don't want his heart to go out to us. We don't want anyone's sympathy, and neither does our daughter. We just want the education that she has a right to, like every other child in this country. And Ruairi Quinn would deny her that because clearly she is a second-class citizen who is not worth an education.

Ruairi Quinn paid the ultimate insult to us and people like us during the week when he sentimentalised and romanticised our situation. He classified us as some kind of special people who have extraordinary powers. But we are not. We are people just like Ruairi Quinn, just like everyone. We were not chosen for this job, we did not apply for this job. Even when it lands on us, it does not make us better people, more able than any other parent to withstand the "anguish" Ruairi Quinn speaks of, no more gifted with the "energy" he speaks of than any other parent.

Even when I see parents of children with special needs protesting in front of Mr Quinn, I don't feel any more kinship with them than I do with any other parent. We are not some kind of club to be pitied, some kind of club which has a special vocation to rear children who present extra challenges. We are just ordinary people. But, like many other ordinary people, we climb a slightly steeper mountain than most other people every day -- emotionally, physically and intellectually. So don't condescend to us and suggest that we are different from any other parent in what we do, that we can somehow withstand more. We are regular citizens who pay our taxes and who are entitled to the same things for our children that anyone is entitled to.

And don't condescend to us either about economics. Don't tell us that "the country is in effect in receivership", that "we don't control our financial destiny at this time". I know that. I am probably more acutely aware of it than Ruairi Quinn. I was certainly aware of the need to cut back spending in this country long before Ruairi Quinn and his colleagues were. I could tell the Government dozens of ways that could cut waste in the morning. And indeed it is heartening to see that some of Ruairi Quinn's colleagues in Labour are showing more bottle about tackling some of this waste than their Fine Gael counterparts are.

But don't tell me that it is suddenly critical now that we start denying the most needy in our society an education. Don't tell me that is an urgent necessity. Not while this Government pumps €100m a year into private fee-paying schools, the same private fee-paying schools that turned out the old boys' networks who ruined this country -- fuelled, in no small part, by the massive sense of entitlement bred into them in these schools.

And don't tell me that we can't afford to give a basic

education to young children who are going to struggle in life in so many ways when we can afford to subsidise third-level education for the most privileged in this country. While we all recognise that third-level education is vital to the future of this country, there are many people who can well afford to pay for it who get it for next to nothing. And while third-level education is important for society, a very basic education for more intellectually compromised people is more important.

If we start deciding that those who find it harder or slower to learn do not deserve the chance, we are going down a very slippery slope. Are their lives pointless? Not worthwhile? Is an education wasted on them? Should we bother offering them healthcare either? Are they less valuable to society because they do not conform to certain norms? Why not give them some small sense of that entitlement which so many private school attendees are given, at the taxpayers' expense?

Beyond Ruairi Quinn's department, there are loads of other ways the Government could be saving money without resorting to the barbarism

of cutting off the most needy in our society. Colm McCarthy wrote a long report on it which has now been sitting around for two years without much being done about it. People in the public sector were also guaranteed job and income security in return for the reform of their organisations.

As far as most of us are aware, that reform has not been carried out. There are still, from what we know, hundreds of people in the HSE who do not have jobs to do, and even some who do not know what their jobs are. There are still all the people in the Department of Health who retained their jobs even after that department's functions were largely handed over to the HSE.

The list is endless of money-saving issues in this country that have not been deemed urgent. Yet, somehow, it is deemed urgent to throw kids with educational disabilities on the rejects pile. And of course we continue to pour billions into a banking system that still does not function, on the promise of getting credit flowing, when in fact those billions have had the opposite effect.

According to reports last week, the figures on employing 2,000 more SNAs -- for whom there is more than enough work -- are as follows. It would cost €60m extra per annum, but the cost of having those people on the dole would be €40m. So the cost of keeping them working would be just €20m, a drop in the ocean. SNAs are among the lowest paid in the educational system, but they are a lifeline to some kind of normality for loads of special kids. Even before this latest ban on new SNAs, the parents of every one of those children had to fight to get that right to that lifeline for their child.

Ruairi Quinn makes the point that the number of SNAs in this country has increased exponentially in recent years. And isn't it great? Isn't it great that kids who just a decade or two ago would have been confined to the educational scrapheap, who would have been institutionalised and isolated, now have a chance of a more 'normal' education and a more 'normal' life?

I rejoice that my daughter was born now and not 30 years ago. She will be a different person than she would have been if she were just a bit older. Because she had the luck to be born into a more enlightened country, where she will go to a 'normal' school if that is what suits her. And she will not only get for herself all the benefits that brings, but she will bring to her classroom a diversity that every organisation, even hardcore capitalist ones, recognise as a positive.

When I was growing up, I knew no kids with special needs. They were 'other'. Sometimes I saw them when we went swimming in Lota, usually on the other side of the glass in prefabs, looking out at us from their side. At Christmas, we used to go to the Spastic Clinic to see the kids there, to sing songs with them and to have a party. I don't know who was more afraid of the other, them or us.

A capping of any new applications for SNAs will reinforce that culture, will ensure that another generation grows up in the ignorance that I did. And maybe that doesn't matter to you if you are blessed not to have to think about it. But it matters to a lot of people that we now live in a less segregated society -- and it even matters to lots of people who don't have special needs because, without sentimentalising it, they get huge benefits from being friends with people who are different.

And the sentimental bit? We are blessed. Our daughter brings us great joy, and I am either wise or deluded enough to know that she brings great joy to other people too. Her sister gets untold joy from her, as do all her little friends in the creche. And yes, before you ask, she goes to a "normal" creche, not a Down Syndrome creche -- though it is, admittedly a very special place, a place full of love and life.

But Mary, being Mary, also breaks our hearts in tiny ways every day. And most of all when you get flashes of a future, a future when we're maybe not around to look after her anymore, a future where the other kids start realising she is different and start to leave her behind, and don't invite her to their parties.

And now we worry too about a future where this country is too barbaric to even offer her an education, the one chance she has of leading the kind of life that everyone wants for their kids, the one chance she has at making a contribution to society and getting the self-esteem and sense of value that goes with that. Has it really come to this in Ireland? Is this the country we have become?

We are blessed, we are not blighted. And I don't think I will ever be able to look at Ruairi Quinn in the same way again for how much he upset my family last week.

But, putting all that aside, I demand an education for my child as much as any parent does. And I demand an education for my child that is appropriate to her needs. Because, God knows, I pay enough tax to fulfil the needs of other people who aren't as fortunate as me, and to pay for all kinds of madness in the public sector.

I have no interest in becoming a campaigner for the rights of the disabled. Most parents don't, because we are busy fighting our own fights, the little extra struggles we meet every day. But if they make us do it, we will. And I suspect that we and our children can be every bit as stubborn and annoying as the old people were. So watch out for us. Because, as much as our blessings haven't given us the special powers some people think we have, we do get quite determined. And we don't really care what people think of us. And, in a way, we have nothing left to lose, which makes us a little bit dangerous. And we have the same right and the same entitlements, and the same dreams and the same expectations for our kids that Ruairi Quinn had for his.

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