Monday 22 July 2019

Brendan O'Connor: Would 'fixing' our child with Downs mean we'd be given back a stranger?

Brendan O'Connor nearly crashed the car when he heard that scientists were holding out the prospect of switching off the extra chromosome that leads to Down syndrome. As parents of a much-loved child with the condition, he and his wife discussed the issue and found it raised profound questions about what makes us who we are

Brendan O'Connor
Brendan O'Connor
Brendan O'Connor

Brendan O'Connor

I FIRST heard on the radio last Thursday morning that scientists have found a way to switch off the extra chromosome that causes Down syndrome.

I nearly crashed the car. It was like a kick in the stomach but I wasn't sure why. I drove home, rattled. Did you hear that thing they mentioned on the radio? I asked my wife. She hadn't. I told her. She literally reeled and ended up leaning on the worktop with tears in her eyes. She went out to hang up some clothes so the kids wouldn't see her crying and we didn't say much more for then.

We talked when we were composed again and by then I had processed a bit more why it had felt like such a punch in the stomach. I know I've mentioned this once or twice before, and sorry for bringing it up again, but our second daughter Mary has Down syndrome. It still feels odd to write that because I don't think of her, obviously, as Mary with the Down syndrome. She is just Mary, and in a way, her extra chromosome is just part of who she is.

Obviously it influences a lot of who she is; think of it like a rock with Tramore written through it. Trisomy 21 is written through Mary, through every cell in her body. But somehow it just blends in and she is who she is. She is not our imperfect child. She is not a broken child. She is not the child we should have had with an alien added on, dwelling in her, or a shit version of what we should have got. She is just Mary. Obviously, as her dad, I think she's perfect.

That kind of acceptance comes remarkably quickly. Of course there is a time when the child first arrives, when you wish she didn't have this aspect to her. You wish you had got the child you were expecting. And you feel sorry for yourself, and for her. And you wish you could take it away. Because you don't really know this baby, so you're not attached to her the way she is. All you see is a lifetime of problems for her, and if you could wave the wand over her then and take it away you would. And everyone would move on and you would never even tell her about it.

But over two years on it's a little bit more complicated. Because Mary is who she is now, and we know her, and we love her. And who she is has been shaped, at least partially, by Downs written through her like a rock. And she has integrated it into who she is, and she wouldn't be the same without it. And she wouldn't be my girl without it. And she wouldn't be her sister's sister or her mother's daughter. She would be someone else. Someone fixed. Someone who society had deemed needed to be fixed.

And of course there are loads of ways in which you would like to fix someone with Down syndrome. Many people with Downs suffer various health complications. And no one chooses to see their little baby having to have open heart surgery, which can be the case, depending on the presence and the size of a hole in the heart. Half of kids born with Downs have a hole in their little hearts. Many of these require intervention. So of course you would fix that bit if you could.

You might choose to fix their sight and hearing too. And indeed we do. It's funny the things that can upset you. We thought for a brief time that Mary would need to wear hearing aids. In reality we were both heartbroken about it. Somehow, the indignity of the hearing aids seemed more unfair than the Downs. Doesn't she have enough to be dealing with? Is she not marked enough?

And then, after a visit to Sean Boylan and maybe prayers, and maybe because kids with Downs can have fluctuation in the hearing due to the fluctuating level of blockage in their little pipes, which are smaller than other people's pipes, Mary went in for a final test the day she was to be fitted with the hearing aids, and suddenly she passed with flying colours. I can honestly say it was the best day of my life. Silly and superficial in a way, I know, but it was a real triumph for her.

She has got used to her little glasses now. They have been, literally, a real eye-opener for her. The first time she put them on, she said just one word, "Wow". It was presumably how the Beatles felt when they first took acid, a whole different perspective on the world. I've got used to them too and now I wouldn't change them for the world. They are a cute powder pink and when you see her leafing through a book wearing them she looks like quite the little intellectual.

There are other things that people would change too. The tube feeding of some kids because their swallow reflex isn't great, the thyroid situation that needs to be minded, and so on. So those are all the bread-and-butter health issues people might understandably wish to wave a magic wand over, and indeed we do intervene in all those situations and try to fix them.

But then it gets more complicated. Do we want to fix who Mary is? Do we want to make her more intellectually typical? We probably do in truth. After all, Mary's family, her mother in particular, and the girls in her creche, and various physios and speech therapists, all seek to intervene to counteract the affects of Mary's Downs. Mary needed a little extra help to learn to walk, to talk, to sign. Right now she is mastering the toilet with aplomb while still only two, probably slightly later than some of her contemp-oraries but still not bad. Reading is next, and that will require extra help too, though she may have more aptitude for it than her peers in some ways because her Downs means she is more a visual learner.

So you do all that, and you try and ameliorate the intellectual "symptoms" of her Downs. So why not then wave a wand over it and change it?

Well, I guess because all the extra help does not compromise the essential Maryness of Mary. We are not, by giving her extra help, trying to turn her into another person. If anything, all the little triumphs and all the things Mary has learnt against the odds are the essence of who she is now, warts and all. She has a light that shines through her, and an enthusiasm and motivation and joy. Who knows how much of it is due to her extra chromosome? For example, Mary lives in the moment, something we are all supposed to strive for in these days of mindfulness. She is possibly the most mindful person I know. Would I dare take that away from her?

You may have heard of Andrew Solomon's book Far From the Tree, about parents who have kids who are radically different from them, whether through dwarfism, deafness, Downs, homosexuality or other differences. Solomon differentiates between vertical identity, the identity that is passed down generationally, like, for example, ethnicity, and then horizontal identity, which is alien to the parents and which is an identity people tend to discover only when they engage with their peers.

People never try to cure vertical identity. Even though being black almost guarantees a more difficult life in America, Solomon says, no one tries to cure people of their skin colour. People do tend to try to cure horizontal identity. For example, Solomon points out that homosexuality used to be seen as something to be cured. In a recent talk, he quoted Time magazine in 1966 calling homosexuality a pernicious sickness deserving no compassion. Similarly, he quotes an important bioethicist writing in the Atlantic Monthly, the voice of liberal America, in 1968: "There is no reason to feel guilty about putting a Downs child away, whether it is put away in the sense of hidden in a sanatorium, or in a more responsible lethal sense. It is sad yes, dreadful, but it carries no guilt. True guilt arises out of an offence against a person, and a Downs is not a person."

So much has changed since then in terms of our attitudes to people with Downs. They live three times longer and many of them lead independent lives. Medicine and society have improved their lives no end.

But still we want to cure them. And we want to cure them to give them easier lives. But at what price? Solomon talks about the social progress we have made in our attitudes to people with disabilities and the medical progress we are making on eliminating defects, and says that it reminds him of that bit in the opera where the hero realises he loves the heroine just as she expires on a divan.

On the notion of curing people of who they are, he quotes autism activist Jim Sinclair, who says that when people say they wish their child did not have autism, they are basically saying they wished they had another child. What Sinclair says people with autism hear when they hear parents praying for a cure is a parent wishing that "we will cease to be and strangers you can love will move in behind our faces".

In general, we are all different, and as Solomon says, people engage with the life they have. They don't want to be cured, or changed, or eliminated. They want to be who they have come to be.

Of course the notion of curing people with Downs is wonderful in a way. Of course you would wish that they would not die prematurely with Alzheimer's. Of course you would wish that they would be able to look after themselves better when their parents or siblings are gone. But don't you love your "normal" children with all their flaws and all their differences from you? Do you want to cure them into being someone else, even for their own good?

It is an incredibly complicated question that forces us to confront the most fundamental, existentialist questions of identity and humanity.

My wife, for her part, says that the main reason she would like to cure Mary is so that Mary doesn't have to go around with a begging bowl all her life. But that, she reckons, is a pretty shit reason for wanting a stranger to move in behind Mary's face.

But then, by the time the cure comes, maybe society will be different too, and maybe Mary will be seen as someone with an identity, and not a disease.

Irish Independent

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