Matters of Life and Death: Disability

Some of you will know that I’m living with postnatal depression. It’s hard.

What I said on Sunday about disability is stuff I believe both in my head and because of my own experience:

We think life should be perfect and comfortable. But God comes to us in the imperfect and the uncomfortable.

We think life is made up of the here, the now, the visible. But our hope is in eternity.

Matters of Life and Death title image

2 Corinthians 4:7-12, 16-18

But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; 10 always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. 11 For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh. 12 So death is at work in us, but life in you.

16 So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. 17 For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, 18 because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal.

On Sunday we looked at the clay fragility of human life from a couple of angles.  How can we accept our own flaws so we can welcome other flawed people?  How do our modern expectations of perfection and comfort get in the way of hospitality to the disabled guest, the disabled foetus, the disabled friend?

English: differnts shapes of clay pots.

I wonder if you have stories from your own experience of how you have encountered God in fresh ways while life has been less than perfect. Or when there has been joy and growth and blessing to be found in those times. Please feel welcome to share them below in the comments. 

This stuff matters. It’s not only instrumental to how we see ourselves, how we feel about our failings, how we are able to accept kindness from others and from God, but it also impacts how we treat other people.

Here’s what I’m talking about. In countries where expectant parents can have prenatal screening to predict the likelihood of their unborn baby having Down Syndrome, over 90 per cent of parents choose to terminate the pregnancy.

This is not only a tragedy for the families concerned, but for the rest of society. It is an enormous loss not to have human beings of all shapes and sizes in our communities. It’s shocking to have to say this aloud, but people with Down Syndrome are just as likely as anyone else to live happy and productive and rich lives, enriching the lives of others as they do so.

You might have seen an article in the paper on the weekend on the first couple to marry in the Christchurch Transitional ‘Cardboard’ Cathedral. Check them out!

Here’s what a survey of 300 people with Down Syndrome said about their own lives:

This final survey was of almost 300 individuals with Down syndrome and wanted to find out about their self-perception, their relationship with others, and what they would like parents and physicians to know.

So much of what is written and talked about individuals with Down syndrome is by people who do not have Down syndrome. These survey results are remarkable for that fact alone–that they are from individuals living with Down syndrome–but the results are also remarkable:

  • Nearly 99% of individuals with Down syndrome said they were happy with their lives;
  • 97% said they were happy with who they are; and,
  • 96% said they were happy with how they looked.

I invite readers to send me surveys of the general population that report that high a response rate to those questions. These results are consistent with what has long been reported from studies of individuals labeled as disabled: they have a much more positive view of their own lives than the one society ascribes to them.

[Read more at Mark Leach’s site.]

A Whangarei man is leading legal action against the New Zealand screening programme, arguing that it leads to genocide of people with Down Syndrome. An article from him is here, and one from a mother of a DS child here.

We need to say out loud, often, that perfection is a stupid standard to hold ourselves to. Life is not perfect or comfortable, and that’s actually ok – on this side of eternity, anyway. You and I will have struggles of one sort or another our whole lives long. There is great richness to be found in embracing and integrating our flaws, failings, weaknesses and limitations

If you’re interested in exploring some of these ideas further, you might like to check out Christian Medical Fellowship (UK). Their site has an index of all sorts of articles on bioethical issues.  You can see a list of articles on different aspects of prenatal testing here.

You may have your own stories of living with disability or loving someone who does. Please do share your experiences with us in the comments below.

This is the fifth in a series of posts on bioethics. You can see the rest of the post from the series here. Next week we’ll be looking at dementia and ageing. 

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15 comments on “Matters of Life and Death: Disability”

  1. Caroline Reply

    I know many here won’t agree with me, but I’m putting out a plea not to be too judgemental on those who chose to terminate a pregnancy of a disabled child (not saying you were T, but I feel the need to put the other side). They are put in the position of having to make a very difficult decision very quickly and probably with very little knowledge or experience of what they may be taking on. I suspect that very few people go through with a termination just because the child will not meet their vision of “perfection”.

    It is REALLY REALLY hard to raise a seriously disabled child and probably even harder to support a disabled adult. Those of us without that sort of responsibilty just cannot know the reality of it. In most cases, it will transform your whole life – in some positive ways, yes, but also in some really difficult ways. It affects you as parents, but also your extended family who are likely to need to offer significant support and, perhaps most heart-breakingly, for any siblings of the child. Not only are their childhoods affected and often cut short as they take on responsibilities beyond their years, but they will often be left as principal carers for their sibilings when the parents become too old to shoulder that responsibility. I know siblings also gain a lot from having disabled siblings, but there’s no denying that they also lose something.

    So it’s tough to take on the responsibility for bringing up a disabled child, but for people who are lucky enough to have the right support network, it’s possible and I agree with T that it’s enriching for all of us to accept all people as equally important whatever their abilities. This brings us back to T’s earlier post about hospitality though. At the moment, there is nowhere near enough support for disabled people and their carers. Far too much of the burden falls on immediate family, increasing the likelihood that people will believe they will not be able to cope.

    Also, in our current society, there truly are people who would not be able to cope physically emotionally or financially. Far too many people are already struggling to bring up children in poverty, working harder than most of us can imagine to keep a roof over their heads and food on the table. Some people really could not cope with a severely disabled child on top of that. Other options might be to put a child into care or out for adoption but, realistically, the chances of a seriously disabled child being adopted are minimal, so they will be condemned to a life in care homes which, in recent history, has proved to be a less than humane option in many cases.

    Sorry if this comes across as too negative. I don’t actually disagree with anything you said in your post T. I just want to be clear that the debate is not simply about the worth of disabled people for those people directly affected by this issue.

    Rant over. I’m ready to be shot down in flames…. :-)

    • Pippa Reply

      No shooting down from me. Just a nod of appreciation for finding words that I agree with, but that I probably couldn’t have found myself.

    • Andy Reply

      I’m not having a go at you, or flaming in any way. i don’t know your circumstances, and don’t presume to know what you are going through / have been through.

      It would be very very hard to raise a disabled child, especially when there is the societal belief that you’ve brought it on yourself effectively as you could have chosen to abort it if you knew of their condition before birth. hence the almost complete lack of downs syndrome kids these days compared to when i was growing up.

      Given a percentage chance of an ok life, or even just a pretty average life in a foster home compared to never getting to see the sun rise, or even just draw breath, surely putting the child in care can’t be ruled out if you really can’t cope.

      • Caroline Reply

        Thanks for your reply Andy. I’m very thankful to say that my situation doesn’t really come into this at all. It’s not a situation I’ve ever had to face or are ever likely to.

        Since I don’t have any direct experience, I’m not actually trying to make a judgement as to what would be right in a particular situation. I’m just trying to highlight that a decision of what to do when you are told you are going to have a seriously disabled child can be a very difficult decision affecting the lives of a lot of people that you have take very quickly on limited information. I suspect there are very few people who decide not to have the baby primarily because it won’t meet their vision of a perfect baby. I believe that the vast majority of couples (because it’s usually not just the women who makes the decision) who choose to have an abortion are well aware that it is a decision that will haunt them for life, but they make the best decision they can for their whole family in their situation.

        Of course, Thalia’s figures are shockingly high and I agree that there is probably scope for reducing them dramatically – and I hope this can be done. I think it goes back to Thalia’s original idea of “hospitality” – giving people the support and confidence that it is something they can take on and that their community is behind them in giving practical and emotional support. But until that’s in place, we can’t ask individuals to make different decisions.

        As for care homes – there are obviously some good ones, but we’ve had strings of stories over here (the UK) of systematic emotional, physical and sexual abuse of vulnerable people in institutions over the past 30 years. Public confidence is probably at an all-time low.

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  3. kiwienzian Reply

    Hi Thalia,

    Our mutual friend Anna sent me the link to this post. I appreciated it and hope it’s not too late for a comment. For the last 10 1/2 years I’ve lived with chronic fatigue syndrome: a severe neurological condition that keeps me confined to bed for all but about four hours a day, as well as living with pain, ‘brain fog’ and nausea. I wrote some reflections on relating to God in this situation a few years back (when my situation was a bit more severe than it is now – then I was only able to be out of bed around 2 hours per day). Should you be interested in reading them, the article is here:

    http://homepages.ihug.co.nz/~thescarletmanuka/writings/walking_with_God.html

    (I’d hoped to write a comment interacting more directly with your post but there just hasn’t been the energy the last week or two, so hopefully the article is better than nothing at giving a disabled person’s perspective.

    I also have a blog at http://martinheather.blogspot.co.nz/ The ‘CFS’ label will get you to various other reflections on my situation, too.

    Cheers.

    –Heather :-)

  4. not a wild hera Reply

    Hi Heather,

    Thanks so much for sharing those links here. I have a friend with severe CFS so I have an idea of your energy budgeting needs, and appreciate you taking the time to write here.

    All the very best.

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  6. Anon Reply

    I read this series of posts when you initially published them, and stopped following your blog at that point. My husband & I had a child through a process known as IVF with PGD, because I have a balanced translocation (BT), and I am a Christian.

    When I read this post, I hear my choice reduced down to seeking perfection. I don’t know whether PGD was the right choice, I don’t know whether God approves of it and what He will say to me about it after I die. I do know that He seemed to speak to us very clearly about taking that path, and I also know that I may be deceived in thinking that.

    When I read this post, what I don’t feel is empathy or compassion for what I have experienced (leading us to choose PGD), nor what friends of mine who have had terminations for medical reasons, or who have lost children to disability in other ways, have experienced. Not choosing disability for my child (and choosing to greatly lessen my chances of recurrent miscarriage myself) is not a convenience. The moral responsibility for my choice weighs heavily on my shoulders and will for the rest of my life. And that’s as naught in comparison to the suffering I see in those who have experienced much later losses of disabled babies, whether by termination or happenstance.

    I don’t expect perfection. I have suffered with severe mental illness from childhood resulting from undiagnosed aspergers & a traumatic childhood. I don’t have a career, nor a degree, nor much earning capacity, because of that other fight. I always wonder what perfection it is that I am supposed to have chosen for my child? I don’t see much chance of my child inheriting a perfect life (or even one considered desirable by most Westerners). This isn’t the only place I’ve heard the ‘seeking perfection’ argument, so my question isn’t just for you, it’s more rhetorical.

    When I look at my position, I see how fragile I was, and the effect that recurrent miscarriages and the potential loss of a child (those children with disabilities resulting from my particular BT are generally outlived by their parents) could have had. I had one miscarriage prior to PGD so I have some idea of the loss & grief. I see that no social worker in their right mind should have approved me for adoption. I see the cost that remaining childless could have had. And when I look at PGD, and how it worked in our lives (our first cycle worked), it seems in line with the actions of a loving & compassionate creator. I don’t know that that’s the case, but it seems like a plausible explanation.

    Our lives as humans don’t tend to fit into these neat moral guidelines.

    It is deeply upsetting to read my life choices discussed and judged in an academic manner. I don’t usually leave comments on blogs but this post has remained on my mind since I read it so I thought I’d return and leave my perspective.

  7. Anon Reply

    Thank you for your kind response (I am the same lady as above).

    It occurred to me that I left something of importance out of my story.

    My PGD child has brought me so much. He brings me joy every day. I have a happy marriage (i come from a family of broken marriages, so I want to say, thus far!), and so far my son enjoys a stability I never did. I sought healing & peace with my past & mental health issues for several years before my son came along, the child I may one day have was always my inspiration (I wanted to give that child a different childhood to my own). I learnt about insecure attachment & that I have it, & I thought through my own childhood & how we could do things differently before I even conceived, & at great length (aspergers has some great benefits!). This is what led me to this blog after he was born.

    I started to display signs of mental illness at 8 but it didn’t begin to be treated until I was 21. I am very bright but ‘failed to live up to my potential’ at school. I then went to a low-grade uni, had what could be termed as a psychotic break at 21, dropped out, met my hubby, & then had a breakdown from which it took many years to recover. I took several years off work, during which time I walked in the countryside daily, prayed, got to know God, had counselling weekly, volunteered & generally got to know & appreciate myself. It was a blessed time. We were poor but my husband believed in me.

    I struggled very much to have hope in a future, without education, a career, or the ability to have children without many difficulties. I have PCOS as well as a BT, my parents’ were affected by the same issues, it took them 7 years to conceive me, their first, & ultimately they separated – I’m sure I don’t need to tell you of the potential cost to a marriage infertility can bring. Both my parents have severe mental health issues. Coming from that background, with the life experiences I had had, and the difficulties facing me in the future as an result of that – what hope did I have? It was an effort to stay alive, even with the love & support of my wonderful hub.

    As I said, what social worker would have approved me – a woman with insecure attachment, no work history, mental health issues & no parenting experience – to adopt or foster? And quite rightly so.

    God however, He trusted me. Being pregnant changed my life. I was 27. It was the first time I felt trusted with something – & I was trusted with something huge by God. I had been overlooked by the world in so many ways but He saw me. He trusted me, with all my baggage, to parent; & to parent the most wonderful little boy.

    I enjoy being a mum like nothing else. The years of work I put in really, amazingly, do seem to have paid off. He seems to be securely attached (he’s 2). He seems happy. I have support my mum did not. I have self understanding my mum did not. He might have aspergers & I would know how to support him. Through my son, the direction of my blood line can be changed. He is everything to me, and although I still struggle with my mental health, I have so much more fight because he is.

    I have come out into the world so much since he was born. I am still breastfeeding him. Our breastfeeding relationship has been marvelously uncomplicated – another thing I feel good at which I wouldn’t have if he wasn’t here. I am becoming involved in eco activism, something I always wanted to do but previously lacked the courage. I have met so many more people & have made so many more connections because he is here. I reach out to people with love so much more – I see the world as a more hopeful & optimistic place.

    If we condemn all bioethics as evil, then, I am condemned to a life of trying to conceive against almost insurmountable odds, under the conditions of having severe mental illness. It took my parents 7 years, & took with it their marriage, which destroyed my mother & with it my childhood (that was the point my major mental illness started). My great grandmother – the last female BT carrier before me (worse odds for female carriers) – had 6 children, 3 were healthy, 1 died at birth & the other 2 before the age of 10. She never recovered, & although married to a church leader, supported terminating for medical reasons & said she would have had she been able. Right before our treatment, we amazingly met a woman at church with the same 2 conditions as me – PCOS & a BT. She had tried for 8 years & had 5 miscarriages with no live births before turning to PGD. She then had 3 children via 2 successful PGD cycles. When she looked me in the eye & told me to go for it, after I had expressed ethical misgivings, it really felt like God giving me the green light.

    I was lucky to have access to PGD, it is expensive & it was funded for us by the NHS – were it not, I wouldn’t have had access to it. Most women in my situation across the world do not have access to it. They have to carry to term or terminate (if they have access to termination). They might not be able to conceive at all. I prefer PGD because it seems kinder to baby & mother to end the pregnancy right at the start, effectively. But I am under no illusions about it effectively being a termination, even if it doesn’t feel like one & isn’t called one.

    When I started down this road, many years ago when I first saw a genetic counsellor, I knew that I would not be able to terminate a pregnancy & felt it was wrong. After so many years in the online BT community, I no longer share that conviction. I have come to believe that God likely leads different parents down different paths depending on what is right for them in their circumstances. I have seen some incredible, faith affirming stories of carrying to term against all odds. And I have also seen all the other stories. I have heard the weight that women carry around with them after termination.

    I wonder often why we as Christians need to lump the actions of others into either right or wrong. I know that when I feel loved as another loves themselves, I feel trusted in the decision I make – & fundamentally in the person I am – even though it may be different to the decision they would make. The world needs so much less us & them, and so much more we.

    Sorry this is so long. I have so much I could say on this matter.

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