Thursday, 26 January 2012

Giving each other reasons to live

Lord Falconer’s report on Assisted Suicide is one of the issues exercising our group members at the moment.  As our group Chair, Katherine, remarks, it makes chilling reading: pop over to Five Feet Above Sea Level for her lucid yet passionate commentary on the report.  I suspect readers of the blog will already know about the report and its conclusion that there is a “strong case” for assisted suicide to be legalised in the UK (if not, Katherine summarises the gist very well.  See also the letter our group wrote to our MP, below).

Since the issue of disability touched our family directly, I have been increasingly conscious not only of the value we place on various human lives, but on how we encourage people to value themselves.  My daughter, now 16, was diagnosed two years ago with Friedreich’s Ataxia, a degenerative neurological disease which is gradually but inexorably robbing her of her coordination, balance and mobility.   The diagnosis came out of the blue when, almost overnight, she stopped being able to control her hand well enough to write or draw.  Until then we had thought she was just “a bit clumsy” (well, like mother like daughter), partly thanks to her own valiant attempts to conceal just how much she was struggling with simple daily tasks like doing up buttons and zips.  At diagnosis we were told that she would be confined to a wheelchair in 10-15 years.  In reality, she is already having to rely on a wheelchair or a crutch + somebody’s arm in order to walk for any distance.

Suddenly all our expectations of the future were fundamentally altered.  At first my daughter thought her life was over.  She withdrew and wanted to die.  It was a very black time.

We’re lucky.  My husband and I have faith, family and a parish community around us.  Drawing on these and on some wonderful caring professionals we have been able to support my daughter and together we have staggered through the initial blackness into what I’d maybe describe as a state of “lightening grey”.  But the effects on my daughter’s emotions and psychological balance have been huge.  It’s not just that she is coping with an illness whose progress cannot be accurately predicted because it varies from individual to individual, something which is frightening enough.  Over and above that, her own self-image and her estimation of her own worth have been rocked.  She’s 16, after all, and female, and bombarded with images of women air-brushed to such a level of perfection it wouldn’t even be found in paradise.  The messages she’s getting from the media about sex and relationships give matter for a whole blog post in themselves. And on top of all that, she has a wheelchair accessory to add to every outfit and she thinks it ruins her look... That’s a somewhat facetious way of saying that she’s struggling to establish her worth now that she can’t walk or write and finds it easier to drink out of a cup with a lid on it, and she can’t see how that fits in with the often very superficially based expectations around her.

What do we, as a society, have to say to her?  “Chin up love, none of that matters to us, you’re still the same person you ever were and we love you just the same.  Just by being you you’re making a huge contribution to the world.  You’re infinitely precious and valuable and your vulnerabilities serve to bring out the best in us and give us opportunities to serve, to care, to do good, to focus on what’s really important in life.  We’ll invest our money and our efforts into making sure that you have what you need to help you cope with your challenges, because at the end of the day, it’s human friendship that will make your life worth living and give you things to look forward to. We’ll be there for you, right there with you in your suffering.”  

Or, “Chin up, it’s true that your life has limitations, you’re not perfect and you’re not going to have the perfect life that is the obvious right of every one of us; you have pain, you may never be able to hold down a full-time job and you’re going to be making demands on the resources of the State and your loved ones... but don’t worry, we’ve been spending loads of time and money ensuring that we can give you something that will take all that away forever.  You can look forward to dying before it all feels too much.”  Advocates of assisted suicide may well have good intentions, but is this the mindset we want to become prevalent?  There’s a better path for compassion to seek.

We work hard, every day, at trying to reinforce our daughter’s self-image, to cheer her up, to help her develop a positive “can-do” attitude – generally, make her realise how much she’s worth. Bit by bit, little by little, she’s getting there.  Thank goodness for that, because she means everything to us and we want to give her reasons to live, not die.  Lord Falconer’s report helps us not one jot. 

Below is the letter our group have sent, as individuals, to our MP.  If you’re reading this in the UK, feel free to send a customised version to your own MP.


I am writing to regarding the Falconer report and the recent campaigns for euthanasia and/or assisted suicide to be legalised in the UK.  We believe the Falconer report gives great cause for concern and should the question of the legalisation of ‘assisted dying’ be raised once again in the Commons, we would urge that you please vote against it.

Bias in the report
The Commission which produced the report was heavily biased from the outset having been funded by Terry Pratchett, a known supporter of euthanasia and the patron of Dignity in Dying, and with nine of the eleven members of the panel being strongly in favour of the legalisation of assisted suicide. The deal to run the Commission was negotiated by Demos with the think tank run by Kitty Usher, a former colleague of Patricia Hewitt who, along with Lord Falconer, tried unsuccessfully to change the law in 2009. The Commission was founded with the clear intention to bring about a conclusion in their favour, as its stated aims betray: to ‘…investigate the circumstances under which it should be possible for people to be assisted to die; recommend what system, if any, should exist to allow people to be assisted to die; identify who should be entitled to be assisted to die and recommend what changes in the law, if any, should be introduced’.  In light of all the above over 40 organisations (including the British Medical Association), as well as many high profile individuals, boycotted the Commission.

Our major concerns
·         The report readily uses the term ‘assisted dying’ when referring to both euthanasia and assisted suicide, thus clouding the distinction between them.  This fudging of terms could potentially lead to 13,000 deaths a year in Britain should ‘assisted dying’ ever be made legal (as outlined in the 2005 House of Lords report).
·         The report over-emphasises the need for assisted dying without suggesting that any extra effort or investment be placed in improving our current long-term and palliative care systems. Sadly PCT-run palliative care facilities and hospitals vary vastly in terms of care depending on one’s postcode. Hospices, especially the local St Catherine’s Hospice, deliver excellent care and devotion to their patients but are usually over-subscribed. This situation leaves the terminally ill and elderly in a very vulnerable position.  
·         Given the circumstances mentioned above, depression would undoubtedly play a huge role in affecting the patient’s judgement; yet the Commission did not make sufficient allowance for the possibility that some people would be pressured into choosing assisted dying at a time when both their physical and psychological health are at their most fragile.
·         We are concerned that the report will encourage pro-euthanasia campaigners to renew their efforts to have assisted dying made legal in Britain.  These efforts will tend by their very existence to promote a subtext which runs as follows: when someone can no longer support themselves due to illness or old age they constitute a ‘burden’ to family and friends or a drain upon State resources; as they are no longer economically productive there is no basis for them to enjoy a sense of self-worth; it is therefore a kindness to allow them to choose to end their lives with ‘dignity’ before their condition worsens.  
      Unless we work to change the way illness, disability and age are perceived by our society, there will be no incentive for us to concentrate effort and finance on developing pain management, aids to help patients keep their independence as long as possible and compassionate nursing care.  Legalised euthanasia will be seen as the logical and easy option for those faced with the prospect of a long, painful illness. As a result many will miss out on months or years of worthwhile life and our society will be impoverished by the lack of individuals who, by their very vulnerability, can foster the best in human nature in others.
·         We fully appreciate the apprehensions of terminally ill patients who are facing the prospect of a long, painful illness, perhaps with the loss of faculties.  However we feel that the report fails to give due consideration to the difference in quality of life that can be made through palliative care as mentioned above.  The support of other human beings can in itself make life worth living even when it involves suffering. 
·         Should it become relatively commonplace for people to kill themselves when they are at their most vulnerable this would affect the human value of each and every ill, disabled or aged person. In effect we would have defined them either as non-productive ‘second-class citizens’ or hopeless victims of irredeemable suffering.
·         In reply to those who argue that not everyone would choose to die we would draw attention to the words of Els Borst, the former Health Minister for the Netherlands, who pushed for euthanasia to be legalised in her country. She has since said that the Dutch government responded too quickly to demands for euthanasia to be legalised without correct attention being given to support for the dying. She admitted that this was ‘not in the proper order’ and that, ultimately, many have suffered and chosen to die because of this upside-down, hasty decision. This is a truly tragic set of circumstances, one we must not allow to be repeated here in Britain.
·         We are writing as a Christian group and as such have a strong belief in the sanctity of human life and the innate dignity of each and every human person, each one of whom is not only made in the image of God but is also a unique individual loved beyond measure by his/her Creator.  Whilst we appreciate that not everyone will share our belief in God, we strongly feel that the Christian voice has a right to be heard along with all others in our democratic society, particularly as Christian values have been foundational to the shaping of our country’s laws and governance, a fact of which the Prime Minister David Cameron reminded us only recently.  We also believe that the Christian perspective on the value of each human person in his/her own right, independent of their economic productivity or physical ‘perfection’, is equally valid across all spectrums of belief and philosophy and has an important contribution to make to this particular debate.

We hope that you will consider our statement along with those published by organisations such as Care Not Killing, LIFE and dozens of others along with the countless individuals who view human life as inherently dignified and valuable beyond economic price.

Yours sincerely


  1. Thank you for such an honest and candid post.

    I am praying for your daughter and you and your family.

    God bless.

    1. Thank you, Victor, for all your prayers (which are returned) and tips and the warm welcome to Blogland!

  2. Letter duly sent to henry Smith, MP for Crawley.