Love is not always enough when you’re only human

Let’s act on our good intentions and make sure women like Bernadette Scully don’t become isolated, writes Brendan O’Connor

‘Can you imagine how you would cope with that?’

THERE will be a lot of people quietly celebrating the acquittal of Bernadette Scully this weekend. There will be a lot of people still upset that the laws of the land are such that this woman had to undergo the pain of a trial. But equally we must accept that of course there had to be a trial, that society has to have boundaries and lines. But equally, thank God, justice was done in this very sad case.

And now we must ask the bigger questions. Because too many people understand how little Emily Barut died. Too many people understand the isolation and the desperation and the exhaustion that could lead to this tragic accident. It is no exaggeration to say that too many people this weekend are thinking, ‘There but for the grace of God go I’.

We like to think we live in a happy-clappy world these days when it comes to disability. There’s nothing we like more than a cute viral video of a kid with Down syndrome getting his hair cut or something. We take 30 seconds out of our day to have a look, and think how cute it is. And we move on with our day, feeling better about the world.

All the little Down’s children are cute and happy and wouldn’t it break your heart and give you a little tear of joy. And we feel good about ourselves too, because it means we’re not weird around people with intellectual disabilities. We’re cool with it. It’s our modern version of ‘they’re a gift from God’. It pleases us to know that it’s all OK, that this is not a tragedy. It pleases us to know that the parents of these children have special reserves of good humour, of strength, of patience, and of general saintliness that enables them not just to cope with the challenges of having a child with an intellectual disability, but to actually find the whole thing very rewarding and cute and funny.

We have, as a society, sanitised the experience of having a person with an intellectual disability live in your house. It’s great fun. It’s heart-warming. It’s inspirational. It brings out the hero in everyone. And they’re so funny with their funny little ways. And even the ones who can’t walk or talk or do anything for themselves, they bring out a special kind of love and their parents get so much out of every tiny little reaction. So rewarding.

And it would be unfair to dismiss all that sentiment. Because there is, to varying degrees, a level of truth to it. For myself I can only speak for someone at the very shallow end of this, but I guess the truth is, in our case, that my daughter has brought great joy to our lives. And it’s corny to say it, but she has made us all slightly better people. Or at least, she can tend to bring out the best in people, as much as she can also bring out the worst in people.

And you have to try and see the funny side of things. And maybe it leads to little moments of heroism. And you know what? When I see my determined little girl sometimes, and how fiercely she fights for her independence and to learn, and when you know how much harder it is for her, my heart bursts with pride. And when you see how proud she is when she does something like write her name, or when she comes home, her own little heart bursting with pride, with the Gaeilgeoir na Seachtaine certificate, these are wonderful moments, moments when you feel close to whatever God is, whatever life is.

But look. Don’t let all this happy-clappiness gloss over the fact that it can be sh*t, too. It can be frustrating, exhausting, trying, disappointing, isolating and sad. And it gives you some taste of how sh*t it must be for people whose kids will never write their own name, who will never answer ‘Ta me go hiontach’ when you ask them ‘Conas ata tu?’ And think of how sh*t it must be for people whose child will never ever speak to them, who will never tell them they love them, who might never even recognise them, or respond to them.

Stop for a minute. Try to imagine if everything you take for granted about your child, down to their ability to move or speak, was gone. Try to imagine if you knew they will never be able to do anything for themselves. Never mind the icing-on-the-cake stuff like school, a job, marriage, kids, falling in love, the pursuit of happiness. Imagine if you knew your child was never going to be able to lift a spoon to feed herself, was never going to be able to walk across the room. Imagine if you had to watch her little body go into spasms on a regular basis. Can you even imagine it? Not too happy-clappy is it?

And the thing you have to try and imagine in that situation is that you will still only be you when you have to try and cope with it. No doubt you will love your child. But you know what? You won’t be given any special powers to deal with it. You will just be you, with all your flaws and limitations. You may slowly come to accept it. You will gradually downgrade your ambitions for any kind of life for your child or yourself. But you will still be just you. I can’t imagine how I would cope. Can you?

Love will get you so far. I don’t know Bernadette Scully apart from what I read in court transcripts. But it seems that she had an incredible love for her Emily. It sounds very much as if it was the two of them against the world. And I have no doubt that Bernadette probably did love Emily in a different way, with a fierceness and an intensity that you and I will never understand, and that you and I are lucky we will never have to understand.

But love will only get you so far when you are only human. And that kind of intense love can be born of desperation, too. If you live in a world where there is an overwhelming narrative that your child should not have been born, and would have been better off not being born. If you live in a world where your child is viewed not as a person but as a problem to be dealt with. If you live in a world where you have to fight for everything your child needs. If you live in a world where your child’s overwhelming needs mean that you become isolated from the community and the world around you. Then, however intense it is, love will not be enough.

Put Bernadette and Emily aside. It’s not fair to speculate on them. But it was said in the course of the trial that this case could lead to some kind of a national debate. And it should. Behind all our happy-clappy notions about children with disabilities are good intentions. So let’s make these good intentions real.

Let’s decide to properly support severely disabled and indeed very ill children and their parents. Let’s make sure they do not reach the levels of isolation and desperation where mistakes are made and tragedies happen. Let’s make sure that these heroic but human mums and dads always feel they have somewhere to turn. Let’s make sure they have access to a life outside of caring. Let’s make sure they always feel if it’s getting too much that society is there to help ease the burden, to give them a break.

Let’s make sure they never get to the end of their tether. And let us, as individuals, make sure that they feel included in society, that they do not retreat into a prison of obsessive love and caring. God knows they are dealing with enough sadness and disappointment every day. Let’s give them some semblance of a life. Let’s give them some semblance of an identity.

And let’s give them their dignity too, and let’s not make them feel they are dependent on the kindness of strangers, on charity, that they only get what they need due to our goodwill. They and their children deserve more from us.