The Week Links: in which our blogger is REALLY REALLY COLD.

Brrr! We’re having some lovely sunny days right now, but the flipside of that is that the nights are very chilly. And so are the mornings!

I missed last week’s links, for which I’m very sorry — we had to put one of our cats down on Saturday, and it was upsetting for everyone. There were also a lot of discussions about death, which was rather exhausting. So I took the time to hang out with the Handsome Sidekick and our Offspring.

Now I’m dragging my feet posting these links, because once I’m done, I’ll no longer have the excuse to stay in the loungeroom with the heater…

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To Your Good Health.

I’ve written before about the wonderful ways in which the internet allows us to access information we would otherwise not necessarily been able to see, and that is one of the amazing and brilliant aspects of it. Unfortunately, it also gives a mouthpiece to those who would otherwise have had a much smaller audience. This is as true for crackpot theorists as it is for advocates of terrorism, and in every case, there is a balance between free speech and censorship.

This week, self-professed cancer survivor, Belle Gibson, admitted that she had lied.

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Quiet, Please.

Years ago, when I was taking a unit on Environmental Education for my teaching degree, one of my professors was discussing how wisdom is perceived, depending on the culture. He had spent a good amount of time in Papua New Guinea, and talked about the fact that silence was a measure of wisdom and knowledge there. When people were quiet, this was an indication of intelligence. Silence is also a significant part of their culture and tradition.

This has stayed with me, through those years, not least because I am not really one to stay silent! I talk… quite a lot. But that’s had to change a bit over the last couple of days, because I’ve lost my voice.

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Integrated Pest Management.

It will surprise few of you that I am right into organic gardening. I care deeply about my family’s and my own impact on the environment, and part of that is trying to use as little intervention as possible when growing the food we’ll eat. Not just for our own benefit, obviously, but also for the soil, the insects and the other animals which call our garden home.

To this end, I practise a method called ‘integrated pest management.‘ You can read all about it on the link, which is quite long-winded, but the basics are: you accept that there will be some loss of crop due to pest and disease, but you hope that on balance, you’ll reap more than you lose. In other words, nature will pretty much sort it out (read: I am a lazy gardener).

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WE’RE ALL GOING TO DIE.

Did I get your attention?

Geez, it’s hard to get people’s attention these days. My Twitter feed likes to tell me what’s ‘trending’ whenever I drop in there. At the time of writing, the trends were:

More recent trends have been about the protests around the death of Australian cricketer Phillip Hughes, the way in which children’s clothing and toys are gendered, and the incarceration and possible pardon of Al Jazeera journalist Peter Greste. About any one of these issues, and many more, there is a long list of tweets, opinions, links to articles, satirical remarks, cartoons. There are calls to change our attitudes, to discuss the problem, to make sure this doesn’t happen again, to push for our politicians to do something. We are inspired to bring attention to these events or problems. They are important, after all.

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Spaziergang am Sonntag.

I get to cheat and use German for the title this week because it’s the 25th anniversary of the fall of the Berlin Wall. I remember this happening, but unfortunately I was thirteen and didn’t really have the wherewithal to fully comprehend the significance of it. Ah, youth.

In any case, I should go and see what my suspiciously quiet Offspring are doing, so without further delay, here are this week’s links:

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Necessity and Invention.

Recently, a blogger I follow posted something which was hard to read.  His goddaughter was diagnosed with a brain tumour some months ago, and the latest news is that her condition is terminal.  She’s just a little girl, and her parents and family and friends now have to come to grips with the thought of losing her.  The blogger pointed to a website where people could donate, to try and find a cure for these cancers.

And this made me think of the number of times every year, when money is being raised for this hospital or that illness.  Friends ask me for donations to cure diabetes or leukemia or mental illness, or assist people living with disabilities.  I’m often asked to sponsor others going on walks or runs or bike rides, so they can raise awareness and money to support more research.

I have to say, I’m kind of over it.

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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.

Knowledge, Ignorance, and the All-Elusive Bliss.

I was at my GP recently for a routine exam, and mentioned that I needed a new prescription for my birth control pill.  It’s been a while since I was on this pill due to pregnancies and breastfeeding.  She asked me if I could remember the name of the brand, and I told her.  She then asked if I smoke (no) and if I ever get migraines.

‘Now that you mention it,’ I said, ‘I do sometimes get them now.  I think it’s when I’m really, really tired.  I lose vision and get really nauseous.’

‘Ah,’ she said.

It turns out, since I was on this medication last, they’ve discovered there might be a link between women who get migraines and also take this pill, and strokes.  STROKES.  Especially if they’re under 45.  Which I am.

I would quite like to not have a stroke.

I got home and did some quick checking on the internet (what do you know? My doctor knows what she’s talking about!) and then I was reading about strokes in general, and discovered that there is a link — whether or not it is causal, seems unclear — between long term, sustained stress, and strokes.  And that made me laugh a bit, because there is a fair bit of that kind of information about.  You know the kind of articles I mean.  The ones that tell you that depressed people are more likely to die younger than those without depression.  And the ones that tell you that insomniacs are more likely to have heart failure.  And when I read those articles, I think, how is this good information to have?  If you’re depressed, how is it good to know that you might have a shorter lifespan?  Isn’t that going to make you even more depressed?  And if you can’t sleep, I’m pretty sure it’s not going to help, wondering if your lack of sleep is a contributing factor to a possible heart attack in later life. And if you’re pregnant? There are now lists of things you have worry about and consider to keep your baby safe. Oh, and by the way, apparently if your grandmother smoked while she was pregnant with your mother, it could be the cause of your unborn child’s asthma.  Awesome.

 

It’s not as if I would like to go back to the age of superstition and luck, when you could die from an infected cut, or when there was no treatment for cancer.  But I do wonder if we have just a bit too much information, nowadays, about our bodies and potential health problems.  How much is too much knowledge?  How much do we really need to know?  We talk about knowledge being power, but is it really empowering, to know about all the potential risks that might just be risks, that are based on statistics with many variables?  I can’t help wondering if it’s because drug manufacturers and health professionals are worried about being sued, if they don’t disclose every single little thing which might go wrong with you later in life.  Maybe we’ve done this to ourselves?  We’ve probed and delved so deeply into the minefield of health research, and we demand to hear every detail, every result of every study, just so we’re up to date with the latest in medical science.  The question is: what are we even hoping to do with this knowledge?

 

In the past, information about our health would be on a need-to-know basis. The doctor would tell you what tests were required, what your prognosis was, and you, the patient, were expected to be patient. You took for granted that their advice was right for you. You didn’t get a second opinion — why would you need one?  And you trusted that everything would be OK, and left your health in the hands of those who knew better.

Of course, people who work in the health sector are people, and they make mistakes and get diagnoses wrong, and miss symptoms. Hopefully not often, but it happens.  So there’s a reason why we started asking ‘what’s that test really for?’ and ‘are you sure it’s…’ and began to demand more information about our health.  And this was a good thing.  If we have more information about our bodies, it could mean that we take better care of them, make better choices.  It might mean we’re sharing responsibility for our health with our caregivers, rather than assuming that they’re always going to have the (right) answers, and placing them on a pedestal, from which they’re sure to fall.

The problem is, in demanding access to all this knowledge, we’ve opened the floodgates, and I’m not sure we’re mentally prepared for all the information that’s flowing very quickly in our direction.  

Being able to access the kinds of knowledge that was previously only available to professionals has its drawbacks.  While it’s great to have more information, we may not necessarily have the experience or training to interpret it, so it becomes confusing and overwhelming.  Reports in the media often select the most shocking or sensational aspects of a study, and focus on them, rather than presenting them in a more measured way.  Of course they do, because the authors want the reports to be read, or watched, or listened to.  But in doing so, they’re not necessarily contributing to a better understanding about our health.  If anything, they’re exacerbating the problem.

I wouldn’t like to argue that ignorance is bliss, but I’m not convinced that omniscience is bliss either.  To that end, I’ve decided to take matters into my own hands.  Oh, don’t worry — I’m still going to ask my doctor for advice when I need it, and go for checkups.  I’ll still take responsibility for the fact that it’s my body, and that I know it best.  And I’ll still do research on my own, if I think it’s going to be useful.  But in terms of all the other stuff, I intend to blithely ignore it, and just assume that I am going to live a long and healthy life.  Because most of this information still really should be on a need-to-know basis, when you think about it.

And I most certainly do not need to know.