Bundles of Joy, With a Focus on the Joy.

Gut reactions are an interesting emotional experience. Sometimes, they’re totally on the mark, like when I hear about a terrible accident somewhere, or when someone has mistreated a child or an animal. But other times, it niggles. I feel a certain way, but then logic gets in the way. I find myself asking what it is that’s making me uncomfortable or angry; I often have to accept that my initial reaction is based on some kind of prejudice or assumption. Once I realise that, I usually feel a bit foolish and vow to be more open-minded, and I am, until the next time when I realise I’m not. I guess we’re all a work in progress.

My gut reaction to this blog post, by Veronica Foale, who has some ‘genetic quirks’ as she likes to put it, was probably one of judgement. Foale has Ehlers Danos Syndrome, which was diagnosed after she had already given birth to her first two children. It was recommended to her that if she were to have any more children, that she pursue the route of IVF so that the embryos could undergo preimplantation genetic diagnosis. Doctors could then determine whether the foetus would have the genetic blueprint for the disease.

Foale did become pregnant with her third baby, and elected not to have the genetic testing. As she points out, her ‘version of EDS doesn’t cause intellectual disability, nor does it decrease life expectancy, and as it is a spectrum disorder, I would have no way of knowing how severe my child’s issues would be (if any) until they were born.’ Foale writes that someone recently made the comment that she should not have had children because she is disabled.

And I suppose, my first thought to that was, ‘yeah, I suppose I agree.’ After all, if someone has a disability which is proven to be hereditary, then isn’t it irresponsible to pass those defective genes onto the next person?  Except… this seems rather draconian. And judgemental. And prejudiced. And makes assumptions on quality of life based on some arbitrary, subjective experience.

As Foale explains:

‘Eugenics is an insidious thing, because in theory, it seems almost sensible. Breeding in order to create desirable traits – surely there’s nothing bad in that?

Until you think about all the amazing flawed people you know, and imagine a world without them here.’

 

Of course, we don’t think of this kind of attitude as eugenics, or we don’t like to. But it is. We wouldn’t deny an able-bodied woman the choice to pursue a pregnancy, or even the choice to give birth to a baby who was disabled. However, we consider that because a person is disabled, s/he will be unable to parent a child, at least, not without financial or physical help from others. 

This train of thought carries with it a lot of broad assumptions about other people’s lives, and other people’s bodies: that disabled people might require assistance in some aspects of their lives, therefore they should not have autonomy in other parts of their lives; that disabled people are a burden on society because they need financial or physical help; that those in society who aren’t disabled would naturally make better parents.

One of the interesting things about discussing disability is that it can quickly become a focus on what others can’t do, as opposed to what they can. It’s very easy to judge people for not being able to do something we can do, and to make leaps of logic as to what kind of an impact that must make on their lives. But in reality, we can’t imagine what someone else’s life is like, regardless of how able-bodied the other person is. Deciding how well someone might cope really isn’t possible, because while we can make broad assumptions based on basic human needs, each person’s perception and experience of life is unique. We can’t get inside someone else’s head. We can’t imagine how difficult or easy life is for anyone, besides ourselves.

When it comes to children, of course we want the best for them. We want to protect them from harm, from pain. We want to make their lives easier than those of the previous generation. We try to create environments where children will be protected, and so we place emphasis on parents being mentally and physically healthy, and if they don’t measure up to this fairly narrow definition of ‘a good parent’, we can be pretty scathing in our judgement of their perceived failings. We rigorously screen adoptive and foster-parents to attempt to ensure that children who might have had a rough beginning have a better future. But the problem with all this is twofold. First, we can’t control everything. Even if we wanted to, we can’t make life soft and problem-free. We love our children, but sometimes, life is hard for them, and that is the case, whatever their abilities. And second, we can’t plan for every eventuality on a personal level. Two friends of mine were in very successful careers, doing jobs at which they were highly competent. When they got pregnant, both of them suffered from ante-natal depression, and one of them was so depressed after the baby was born, that she needed help everyday. Without it, she told me, she wouldn’t have been able to even get out of bed. And yet, before she had a child, nobody would have doubted her capability to cope.

We make decisions about who should and shouldn’t have children based on what we think we know, or what we think we can predict. But if we start judging who can and can’t reproduce based on the quality of one’s genes, where does it end? Take my own situation: both the Handsome Sidekick and I need to wear glasses (due to an inherited condition). He is colour-blind. My father has a hearing difficulty which developed as a child and which may be hereditary. My paternal grandfather died of heart failure, my paternal grandmother died following a stroke, my maternal grandfather died from complications with Parkinson’s disease. There are other mental and physical health issues in both our family trees. And yet, we have four children, who may have inherited any number of these diseases. I didn’t think twice about these conditions when we decided to plan a family, and nobody has ever asked me whether I’m concerned about my children developing these problems when they’re older.

I understand that this is a very emotive topic.  There is no one-size-fits-all approach.  What’s more, the concept of what is disabled and what is not is in constant flux.  Even ten years ago, we knew far less about conditions such as autism or Alzheimer’s disease than we do now.  Research and advances in medicines and treatments have changed how we engage with these conditions, and our society has had to alter its perceptions, as well.  This is not to say that science is going to attempt to mould us into some kind of bland copy of the person who came before us, but it does mean that we need to become more accepting of the diversity which exists in our community, rather than trying to deny it’s there, or prevent it from coming into being.

I understand that people, when deciding that a disabled person should not become a parent, are really making that decision on what they think it would be like to be disabled and a parent, or what it would be like to parent a child with a disability, or what it would be like to be a child with a disability. I know this last is where my thoughts were, in my first reaction to Foale’s discussion of her third pregnancy. But as I realised, and argued above, each person’s experience is different–that’s what makes us all so interesting! And we are more than just our genes. We are people with personalities, which encompass strengths and weaknesses, and qualities both irresistible and undesirable, and the perception of which are which is highly subjective.

Deciding whether or not to have a child is not a rational, straightforward decision. It’s fraught with emotion and expectations, and the resulting offspring often inspires more of the same. But telling someone that she cannot have a child because you’ve decided she won’t be able to manage, or she will do a poor job as a parent, or she simply isn’t physically up to the task, is not only condescending, it’s mean. Rather than judging, wouldn’t it just be better if we went out of our way to help out parents, regardless of their abilities, because no matter where you’re coming from, it’s hard work. And every parent I know could use a little less ideological postulation, and a little more solidarity. Count me in.

7 thoughts on “Bundles of Joy, With a Focus on the Joy.

  1. It’s a topic caught between a rock a hard place and an immovable object (this requires a mixed metaphor!). There’s what’s good for parents, to have the children they’re ready to have, for the children, to be born able to function sufficiently, and the species, to have random opportunities for new/better people to be born. No answer perfectly fits all needs all the time, but you’ve found one that seems to be a comfortable fit. Somehow, imagining what’s on the other side of infinity seems more likely to yield a perfect answer.

    • Yes, you raise a good point: we just don’t know what each individual is going to bring to the world. I know people who have chosen not to have children for all sorts of reasons, and of course, I respect that decision whole-heartedly. I also know that having children was something I didn’t necessarily always think I would do, but it has made me a much less selfish person. I don’t mean that in the sense that I have to give up my time and energy to look after these young people, but just that I think I’m more empathetic and have more understanding for others, now. Maybe I would have reached that point without becoming a parent, who knows? I like the idea of imagining what’s on the other side of infinity🙂 It makes it seem like anything is possible.

  2. Fascinating post–so well written and reasonable, also———not easy to do in response to a topic like this.

    I find it especially interesting given my own disability–bipolar disorder. I’ve never elected to have children. Sometimes I wish I had. But my illness is genetic. My grandmother and great aunt had mood and/or psychotic disorders before me. I don’t know if I would have been a good mother. There were years when I certainly couldn’t have been, and now that medications have gotten my symptoms well managed, I’m probably too old.

    Thanks for looking at this topic. Well done, my friend.

    Hugs from Ecuador,
    Kathy

    • Thank you🙂

      It is very hard to know how you’re going to cope with parenthood until you get there, and even then, your reactions can surprise you! I know that I was thrown into complete disarray from pregnancy and sleep deprivation… now that my youngest is starting to sleep through the night, I’m realising just how much I have been functioning on some lower level for so long.

      Being a parent is fantastic, and I do enjoy it. But obviously, if you decide not to go that route, life has other wonderful paths you can travel, which are not always possible with children in tow! And I’m glad I get to follow yours🙂

  3. Hi Rebecca,

    I’m really glad I could make you think. I understand what you mean about gut responses and then trying to work out why I have those gut responses, when logic tells me it’s ridiculous.

    I went into pregnancy with my third baby with my eyes wide open. I knew there was a chance she would have EDS, but also, there was a 50% chance she wouldn’t. It was a coin flip really.

    The odds didn’t land in our favour, and it’s clear Evelyn has EDS, which has caused gross motor delays (but! she’s walking! I am excited.)

    What we couldn’t have expected, and is unrelated to EDS entirely, is that Eve has some further issues. Nothing that will interfere with her quality of life, but some neuro stuff (EDS doesn’t have a neuro component, although it can have autonomic dysfunction) with non-epileptic seizures.

    Things happen that we can’t plan for. Even if we’d screened embryos, we may still have ended up with a heart defect, or a growth restriction, or a leg that didn’t form properly.

    I know that some people thought it was hideously unresponsible to bring a baby into this world without doing genetic testing, and be clear, genetic testing implies that you will have an abortion if anything is found to be wrong – I am pro-choice, but I don’t think I could choose abortion for myself. But, who else would be better equipped to handle some of the quirks of EDS, than someone who also lives with it?

    A lot of my problems now could have been prevented with proper physio and support at a young age, but because my EDS did not affect my life until I was 13, and I wasn’t diagnosed for many years, these things didn’t happen.

    It’s an interesting thing, disability and it polarises people. I wouldn’t wish for any of my children to be different from who they are, strengths and weaknesses.

    Thank you for your perspective, and for looking deeper.

    Veronica

    • Thanks so much for reading and responding to this. You point out something that I was also thinking about when reading some of the responses to your post: prenatal testing is not a guarantee of anything. And like you, I’m pro-choice, but when faced with an unexpected pregnancy, I realised it just wasn’t something I could do at that point (considering I was in a stable relationship with the father of that baby and my other children). And you are absolutely right, in that you are more able to help your children deal with any issues arising from their EDS due to your own experiences with it.

      Disability does polarise people, but I’m glad there seems to be more discourse now than there used to be. From reading your blog, your children seem like lovely, well-adjusted young people. Congratulations on that–it’s not an easy task!

      Thanks again, for coming here, and also for your original post.

  4. Pingback: Disabled and Pregnant: 5 Tips For Maintaining The Care You Need | Natural Pregnancy

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s