From the Revd Michael
Hore
Sir, - I am grateful to Professor
Michael Marsh (
Letters, 20 July) for arguing that severe disability need not
be incompatible with dignity and usefulness. The campaigning voice
of many in the media claims that the only realistic solution to a
severely limited life is the oblivion of death. I would wish to
testify that this need not be the case.
I was diagnosed with motor neurone
disease some three years ago. Since then, I have experienced
progressive disability. I am confined to a wheelchair, I cannot
breathe without mechanical assistance, and I need help with
dressing, eating, turning over in bed, and toileting.
I am still in post as Rector of St
Laurence's, Upminster. Because of the progression of my illness, my
ministry in the church is constantly changing. I am largely a
prisoner in my rectory. I cannot visit people in their homes.
Leading worship in church has become a struggle. I could easily
look upon myself as useless. With the generous help of family and
parishioners, however, I can still be of some value, and (I am
repeatedly told) am valued.
Of course, everyone reacts to a
disabling illness in their own way; I cannot offer my response as a
model for anyone else. Nevertheless, I find the most powerful
encouragement in the belief that, despite my physical limitations,
God still has a purpose for my life, and that I still have a
ministry to fulfil.
Professor Marsh is correct in saying
that, despite one's having lost so much, there are still great
blessings in being able to "see, hear, smell, and think". There
remain many ways in which I can minister as a parish priest. I can
still witness to God's love; I try to show that life is to be
enjoyed; my service of God remains without bitterness. Indeed,
while I would much rather not suffer from this terrible disease, I
believe that I have an important witness in showing that positive
faith can survive severe disability.
Strangely, I do not feel I can
contribute very much to the debate about assisted dying. Perhaps I
am simply lucky in my personality and my faith; I cannot demand
that every seriously ill person should think as I do. But I do take
issue with those - particularly in the media - who encourage me to
believe that death might be preferable to what I am experiencing.
Dignity, joy, and usefulness can survive serious disability.
MICHAEL HORE
The Rectory, 4 Gridiron Place, Upminster, Essex RM14 2BE
From Canon Robin Gill
Sir, - I am most grateful to Professor
Michael Marsh (
Letters, 20 July) for writing a detailed response to my article
(
Comment, 13 July) on the tragic predicament of Tony Nicklinson,
who has locked-in syndrome
Using his medical expertise, he argues
that Mr Nicklinson's condition is quite different from that of
Anthony Bland, who was in a so-called "persistent vegetative state"
(a phrase that I used but personally dislike). I must defer to
Professor Marsh on this, although I never argued that the two
conditions were medically similar.
My focus was on the legal and ethical
similarities and dissimilarities of the two cases, and here, I
fear, Professor Marsh is on less secure ground. He argues that my
"assessment is neither strictly accurate nor clear". In contrast,
his own is clear-cut: Mr Nicklinson "does possess the power to die,
and, at his choosing - by refusing all fluid and calories", and
that "assisted killing is illegal."
This is indeed clear, but harsh. It
also ignores the legal ambiguity of the Law Lords' judgment on
Bland (a number of legal experts have concluded that they really
did intend to bring his life to an end), and Mr Nicklinson's deep
distress at having been treated in Greece, as he claims, against
his wishes (something that would be illegal and unethical in this
country).
Having discussed this carefully with
medical lawyers, I doubt if the judiciary will allow doctors
actively to kill Mr Nicklinson as he wishes; nor would I wish this
to happen. But some judicial process - perhaps extending the
Director of Public Prosecutions' Guidelines for those with
locked-in syndrome on a case-by-case basis - is, I believe, the
least we should do to respond compassionately to Mr Nicklinson.
ROBIN GILL
SECL, University of Kent, Canterbury CT2 7NF