Wednesday, November 07, 2007

Panel Discussion on Genetic Testing

I've just watched the first episode of Heroes on the TV. There's something unsettling about watching a fantasy of genetic mutation that leads to extraordinary superpowers for those affected, when in real life you are sitting with someone who lives with the real effects of a genetic mutation - and it doesn't lead to flying or stopping time! Not that he isn't super, but still... - actually I think that Alfie should be on Heroes too.

I was asked to give a parent's perspective at a panel discussion on genetic testing last week. (I felt sick every time I thought about it for weeks, but it turned out quite well in the end).
Here is a news article about the panel discussion, and here is some more information about the campaign that launched it. And, if you've got about 10 minutes... here is what I said:

"While I wouldn’t say I was an expert, I feel that I do have valuable expertise as someone who knows from personal experience about Down syndrome – the condition that is most commonly detected through genetic screening.
I have two sons: Noah who’s nearly 4 – he was born without Down syndrome, and Alfie who’s 1 and a half – who has got Down syndrome.

When I was pregnant, everyone at our hospital was offered the nuchal fold test as a matter of course- regardless of age, and for my friends who had had it, it had been a very scary and stressful time. My husband and I decided to decline the test because both our pregnancies were planned and we felt very strongly that we would love our children, no matter what. We weren’t going to love them less if they were boys or girls, if they had heart problems or diabetes, if they were short or tall, or if they had Down syndrome, - we would love them for themselves. We were pleased that we’d had this discussion when Alfie was born because we knew that we’d already thought about Down syndrome, and it was something that we thought we could cope with. And although it was a shock and we had to take a deep breath, we knew where we both stood and were able to hold hands and go forward.

The issue of genetic screening is sensitive and people worry because it can easily be seen as an anti-abortion issue. But for me, it is a woman’s rights issue, and an issue of disability discrimination.

At present, women are offered genetic screening to detect chromosomal abnormalities with no counseling about what this could mean. They are not prepared for the choices that they may have to make. And most people don’t know anything about Down syndrome. Because everyone is screened and offered a termination for Down’s – the assumption is that it must be a dreadfully debilitating condition that causes extreme pain and hardship for all involved.
The social stigma that surrounds Down syndrome and other genetic conditions, combined with the minefield of the abortion debate, can make this a tricky area for the medical staff who carry out genetic tests. They don’t want to force parents to have babies that might have health problems in the future, and feel the need to highlight the potential risks, partly to protect themselves from legal retribution. But this medicalised approach can mean that potential parents are pressurized - sometimes overtly, into making the decision to terminate, and leaves other parents feeling guilty, foolish and alone for choosing to continue with a pregnancy. It also means that a realistic picture of life with a child who has Down syndrome is rarely given.

I believe that at the moment we, as a society, are not doing right by pregnant women. If women are given clear, unbiaised information, before they have diagnostic tests, and preferably even before they become pregnant, they will be more able to make informed choices that are not rushed or clouded by a fear of the unknown, or ill-informed prejudice.

What about those who regret their choice? Or those who find out that they based their decision on something that was not true? When women are only given information from the medical perspective, and encouraged to have terminations without being able to share the stories of those who actually do the work of parenting children with Down syndrome, from birth to death, they are being denied the right to true choice.

When I was pregnant with Alfie I went for the 21 week scan and it was obvious that something was wrong – the staff got in a fluster and there was lots of too-ing and fro-ing. In the end the consultant was called in and she looked over the scan and said – “it’s all within the range of normal for a boy, but if it wasn’t we’d be talking about Down syndrome, and I know you don’t want to have that conversation”. But the truth was I did want to have a conversation about Down syndrome. If they knew that there was something up with my son I wanted to know about it – but the sort of conversation that I wanted wasn’t just a ‘should I terminate this pregnancy or continue with it’ conversation – I wanted a more rounded discussion than that. What could Down syndrome mean for my family? for my unborn son? for his life and for his future? But that sort of conversation wasn’t offered.

The arguments that I have seen to support mass screening in order to prevent people with Down syndrome from being born are these:

1: It is economically more cost effective for a society to limit the numbers of people who are born with special medical and basic living needs.
2: Down syndrome causes extreme hardship and suffering for the person who has it.
3: Down syndrome places severe hardship on the mother and family of the person who has it.

I believe that all of these arguments are flawed or based on very outdated information.

Firstly, I don’t believe that putting a financial cost on a person’s life is an accurate way to value it. It is simply not possible to say, for certain, how much a person will cost society during his or her lifetime.
We cannot know if someone will get a job, go to prison, have a large carbon footprint, or cause misery to everyone they meet, before they are born.
We don’t encourage terminations for people who are more likely to have breast cancer or diabetes, or those who are likely to lead expensive lives in terms of cost to the environment, or lawlessness, or even just general unpleasantness, so why encourage terminations on the grounds of an intellectual disability? There are ways of life that have a greater cost to society, so to pinpoint Down syndrome in particular, is to make a decision based on prejudice.

Secondly, my experience is that people who have Down syndrome do not live a life of suffering any more than people who don’t have it. Medical treatments mean that more people have a good quality of life and survive heart problems. But prejudice and misunderstanding, and a lack of specifically designed services, can mean that people face more obstacles than they need. I believe that genetic screening actually adds to this prejudice by fueling the fear that Down syndrome is ‘terrible’ – something to be avoided at all costs – something to be stopped before it even begins:

This view negatively affects people throughout their lives, and as fewer people are born with Down syndrome, so fewer services are available, fewer people know someone who has this particular disability, and more prejudices are reinforced.
If fewer people are being born with Ds - this must have an impact of the lives of those who do live with the condition. A friend and I have recently started running a club for teenagers who have Down syndrome, and they say that they get a lot from feeling like they belong and have friends who like the same things as they do. What about when Alfie grows up? This is a particularly mothery thing to be worried about, but surely fewer people being born with Downs syndrome will affect his chances of finding a girlfriend, making friends, feeling that he has something in common with other people, feeling that he is not alone.
In my opinion, genetic screening actually exacerbates suffering and hardship for people with living Down syndrome more than it prevents it. If we as a society want to prevent hardship and suffering for people with intellectual disabilities, we should be investing money, not in genetic screening, but in ‘back to work’ programs, in training for independent living, in support groups and social groups, and in Down syndrome specific health programs.

Thirdly, I too had the fear that life with a child who had a disability would be one of hardship and suffering. It was something I wanted to avoid and something that I was afraid of. But it hasn’t turned out like that. When potential parents are counseled that having a child with a disability will put a severe hardship on their family, they are given misguided information.

It’s quite easy to view parents of children who have Down syndrome as special parents, super parents: the reality is that I’m not a super mother – I’m not someone who lives for her children and has endless patience. If I don’t get a full nights sleep I’m pretty horrible to be around, and I have limited interest in cleaning and changing diapers. I don’t think that I have special skills that set me apart as a remarkable mother, I just try to do a good enough job. And being a mother to Alfie has been a really joyful experience for me. I fell in love with him, just like I did with his brother, and he responds to me with love, cheekiness, and occasional crankiness – just like his brother.
I have been surprised that the similarities to parenting my son Noah, have been more than the differences.
Alfie is by no means an angel, I don’t feel blessed especially, and I don’t have a romantic notion that he is somehow more wonderful than my son who doesn’t have Downs. But he is lovely and cute and funny and fun to be with. He is responsive and stubborn and bossy and curious. He hasn’t been as irritable as typical children can be, and as one friend described her son – he is actually ‘embarrassingly easy’ to parent.
I’ve been more worried about his health than I was with Noah – he’s been more prone to catch colds and last year he had pneumonia that kept him in hospital for two weeks – so it’s not all been plain sailing. But the difficulties that we have faced haven’t made us overly depressed or upset – they haven’t put a severe strain on our family life or our marriage. On a day-to-day level, our biggest problem is trying to stop him climbing the stairs and stealing toys off his brother.
The strains that we have experienced have mostly come from being part of a society that puts more emphasis on preventing people with Down syndrome from being born, than on supporting them to lead independent lives, fully included as part of our community. As fewer children are born, resources are steadily reduced. I am more likely to have to closely parent my son during his adulthood if the supports are not in place to help him live independently - surely this is where the emphasis should be in order to help women like me - rather than on encouraging us to give up our children.
Alfie’s pretty cute at the moment and I know he won’t always be a cuddly baby, so it’s been really good for me to meet teenagers who have Down syndrome – to see what the future holds for us. And I’ve found that everybody is different. The young people who take part in our photography project are individual and similar, fun and reserved, cautious and vivacious and mostly, they are just themselves- just teenagers wanting to hang out with their friends and have a laugh. Alfie will be more like himself than he will be like a person who had Down syndrome. He might have a job, he might fall in love, he may do something completely surprising. The extra chromosone doesn’t define his personality and I don’t’ think it should define his future. I hope that my son is able to grow up in a society that values diversity. A society that doesn’t run in fear from difference. I hope that Alfie is confident and proud of who he is. And I hope that he is not alone."


Anonymous said...

Alice, I strongly disagree with you on that I do think you are a remarkable mom. Not because Alfie has Down syndrome but because I heard you give this wonderful, honest speech. I knew the idea of speaking to a crowd, amidst professors and other high profile people made you physically sick. I saw your hands shake behind the console as you were talking. But you did it, because you knew it was important and it had to be done. You left a big impression with everyone present there that night. As one attendee spoke; she would leave that night with new ideas and thoughts on this issue.
Ps. thanks also for giving me the strength to persevere in the face of apathy.

Julia said...

Lovely thought-provoking piece Alice. I'm sure you must have been nervous but it sounds like you did a great job!

jennifergg said...

This is just a wonderful, wonderful articulation of what I feel to be true, exactly, in my heart, too. Thank you!

Shelley said...

A wonderful post - every time someone writes about their experiences or generously shares them in a public forum they are paving the way for a better, hopefully more accepting future for ALL our children, so THANK YOU - you represented us and our children beautifully.

Nephesh said...

"The strains that we have experienced have mostly come from being part of a society that puts more emphasis on preventing people with Down syndrome from being born, than on supporting them to lead independent lives, fully included as part of our community."

This is exactly how I feel. It is not hard to see the stranger that sees the extra chromosone dressing my son, and defining his future. And yet, if only, the shoe was on the other foot, maybe just maybe that same stranger would be asking the same of me: To see his son as a person first and foremost, and that, indeed, his living, breathing, loved being is as valid as my own.

You write so very well. I truly enjoy reading your work. Now that my son is getting older, I feel more able to talk about this topic. I feel a pressing need to be involved.