Memorandum by Dr Jane Campbell, Chair
of Social Care Institute for Excellence (SCIE) and Commissioner,
Disability Rights Commission (DRC)
INTRODUCTION: SUPPORTED-LIVING
VALUES VERSUS
THE DYING
PROCESS
1. Over the last several years the campaign
for euthanasia has gained momentum. Individuals talk of wanting
not to die in pain, with indignity and the loss of control of
bodily functions. They talk of being a burden on friends and family.
Severe incapacity or terminal illness has always been a taboo
subject in our society. The general population deeply fear losing
their mental or physical faculties and feel the answer to that
anxiety may well lie in euthanasia legislation. It is my view
that before we consider regulating the dying process we need to
deal with society's deeply held prejudice about the quality of
life of people with a so-called terminal illness. For it is my
belief, that until we introduce supported living values into the
psyche of our society, we can never have a balanced debate on
euthanasia legislation. For this reason the majority of disabled
people in the UK disabled people's movement oppose this Bill.
2. In 1999, a global summit of disabled
people met in Washington DC, to discuss the situation and concerns
of people who require human support to live.[1]
The conference concluded with a declaration of principles of interdependent
living.[2]
The first of these principles states:
". . . that all human life has
value and that every human being should have meaningful options
to live with dignity and respect."
3. If we accept that all human life has
value, it follows that we should strive to value the individual
human life. Regrettably, in current society, some lives are deemed
more valuable than others. Disabled people who live with a terminal
illness tend not to be seen as leading meaningful lives as I will
demonstrate. Drawing upon my own experience and the evidence I
have gathered from working and campaigning within the disabled
people's movement over the past 25 years, I will argue that severe
incapacity is typically perceived to be an inferior state of being.
In such circumstances, legalising euthanasia or as Lord Joffe's
Bill calls it "assisted dying" risks the lives of people
with no wish to die. My evidence is not centred on a moral or
ethical position on the right to live or die. What I wish to discuss
here is the impossibility in the present climate of opinion of
ensuring that terminally ill lives will not be put at risk.
MY PERSONAL
CONCERNS ABOUT
A GROWING
EUTHANASIA CULTURE
4. When I was born, my mother was advised
to take me home and enjoy me as I would die within a year. As
can happen with the prognosis of terminal conditions the doctors
got it wrong. Although I was frequently unwell, mostly with life-threatening
chest infections, I was treated with life-saving antibiotics and
ventilation and thrived in this positive medical environment.
Happily, some 40 years later, I remain very much alive.
5. But I have noticed a change over the
last two or three years, especially in the aftermath of the high-profile
Diane Pretty case, which has influenced public opinion, including
that of some medical professionals, to generalise Pretty's situation
to all patients with diagnosed terminal conditions. Devastating
is not too strong a word to describe an experience I had in January
2003, when I was admitted to hospital with severe pneumonia in
both lungs and required emergency treatment.
6. The consultant who was treating me commented:
"You are very ill. If you go into respiratory failure I am
assuming that you do not want to be resuscitated with a ventilator."
I was a taken aback by this and said, "Well, why?" He
replied that the chances of weaning me off the ventilator would
be very remote—"And you wouldn't want to live on a
ventilator." When I said that meant I would die and of course
I want to be ventilated, he looked (I thought) puzzled but appeared
to let the matter drop.
7. The next day I was in intensive care
when another, more senior, consultant repeated the same message:
"If you go into respiratory failure—and this looks
likely—then I am sure you won't want to be anywhere near
a ventilator." Again I protested but by now I was getting
very scared. My husband tore home, grabbed a photograph of me
in my doctoral graduation robes, and returned to the hospital
shouting to the doctors: "This is my wife, not what you think
she is. She has everything to live for. You do everything for
her just as you would for anybody in this situation." Such
extreme measures helped bring about a change of mind and I have
lived to tell the story, albeit I kept myself awake for the next
48 hours, fearful that if I went to sleep I'd never wake up.
DOES THIS
EXPERIENCE SPEAK
FOR OTHERS?
AM I THE
LONE VOICE?
8. In the UK, the Disability Rights Commission,
Disability Awareness in Action and similar organisations are gathering
evidence about assisted dying from disabled people and their families.
These works in progress are demonstrating that decisions regarding
life-saving treatment are often made in an environment of ignorance
and discriminatory attitudes towards and about disabled people.
In addition, society's obsession with image and the body beautiful
reinforces negative stereotypes that disability is equal to a
state worse than death. This personal submission of evidence for
the Select Committee is not the place for comprehensive report
and analysis on research within the disability community on this
issue. However, I would like to quote a small number of individuals
from within the disability community who perceive the proposed
legislation to be a threat to their own safety and well-being,
and/or think such legislation will exacerbate a culture of negativity
around severe disability or illness.
9. Michelline Mason, Chief Executive
of the Alliance for Inclusive Education, says that:
"A message over the years clearly
and firmly slipped into my unconscious, saying that people would
prefer it if I died. It seems that since then I have spent nearly
all my life desperately trying to prove that I should be alive,
that I was not suffering (even when I was) [and] that I was not
worthless, but indeed exceptionally worthwhile.[3]
"
10. Michelline, diagnosed from birth with
severe brittle bone disease, had the wherewithal to resist her
social fate, but many severely incapacitated individuals are in
danger of succumbing to the negativity that can lead to suicide,
and these are among the very people with a diagnosed terminal
illness that the Bill is targeting.
11. Roy Webb, Head of Policy, National
Centre for Independent Living (NCIL), writes:
"This [Assisted Dying] Bill adds
to the negative images of disabled people by focusing on the pain
and suffering that we sometimes experience. The Bill will, in
my opinion, add to the general public view that if you are ill
or disabled and certainly if you have a terminal illness, that
your life is somehow inferior to that of other people. In fact,
although I have [Multiple Sclerosis] and this is sometimes described
as a terminal illness, this has never been any concern to me in
my life . . . If [people with terminal illnesses] are getting
the support they need and can live the life they choose, perhaps
they will not feel the need to bring their lives to an end.[4]
"
12. As members of the Select Committee will
know, the Member's Bill on Assisted Dying was defeated last year
largely on the grounds that it threatened the lives of disabled
people. In response to this objection, the Bill has been re-drafted,
narrowing its scope to the terminally ill. Roy's testimony highlights
the fact that people with Multiple Sclerosis, Motor Neurone Disease,
Altzheimer's Disease, Parkinson's Disease etc—in other words,
the chief alleged beneficiaries of assisted suicide—do not
make such easy distinctions between disability and terminal illness.
13. In 2000, Rachel Hurst, Director of Disability
Awareness in Action (DAA), made the following plea on behalf of
disabled people to the Bioethics community at their 5th World
Congress:
It takes a particular sort of courage to rise
above these negative impacts and have a faith in your own worth,
or the worth of your disabled family member. It takes courage
and a clear understanding that disability arises from the social
barriers of attitude and environment to your impairment, not the
impairment itself . . . Just as we all recognise that society
needs the difference of women and people of different races and
backgrounds, so society needs people with impairments.[5]
FEAR, BIAS
AND PREJUDICE
AGAINST TERMINAL
ILLNESS
14. My own experience and that of others
demonstrate the strength of negative beliefs about severe impairment
prevalent in our society. The perception that disabled people
with terminal conditions live flawed and unsustainable lives is
one of these negative beliefs. The belief that death is preferable
to severe impairment is another. It is difficult enough encountering
these attitudes in day-to-day living. In the context of Assisted
Dying it is more worrying that such beliefs are sometimes held
by medical professionals who, let's face it, are ordinary people
like the rest of us, subject to much the same social stereotypes.
15. In 1999 an 18 month old child, ("Baby
C"), with Spinal Muscular Atrophy (SMA) was denied ventilation
to help her through a chest infection. The decision was made on
the basis that her "disability was too terrible to live a
quality life". In addition she would need "total bodily
care for the rest of her life" and this would be a "burden
on state resources and family support"[6]
The family did not accept this decision and took the hospital
to Court. The Judge ruled for the hospital having received advice
from a range of doctors, who all categorically stated that no
one with this diagnosis could live beyond the age of two, and
even if they did, their life would be little short of a living
hell. Adults including myself can tell a very different story
about living with SMA. The baby died as a result of being denied
the health care offered routinely to non-disabled babies with
severe chest problems. The view taken by the doctors in this case
demonstrates the prevalent attitude in society towards terminal
illness.
16. Seventeen years ago Dr Ian Basnett,
a young doctor with everything to live for, was left quadriplegic
following a sporting accident. He admits that before the accident,
". . . like many people, I had a terribly
negative image of disability. When you suddenly become severely
disabled you still have that viewpoint. Before I was disabled,
I was working as a junior doctor. That brought me into contact
with disabled people and I remember admitting a man with quadriplegia.
My reaction was, `how could anyone live like that?' "[7]
17. The Disability Rights Commission (UK)
is unanimous in its opposition to the passage of this Bill. Members
of the Select Committee will also be aware of similar opposition
by disabled people in other countries.[8]
There is no disabled peoples' collective in the UK that seeks
passage of this Bill.
18. Some individuals seeking the legalisation
of Assisted Dying claim this is a human rights issue. I am not
alone in repeatedly drawing attention to the fact that human rights
are as much a social issue as they are a matter of personal autonomy
and neither can be considered in isolation.
19. The Voluntary Euthanasia Society (VES)
has reportedly described people with MS as being incurably ill,
and those who wish to assist them to die as performing a supreme
act of compassion. This view demonstrates the strength of such
a negative medical model. We may feel it is a compassionate act
to help someone end a life that is intolerable to them. The danger
is the assumption that terminal illness alone, in this case the
physical condition brought about by Multiple Sclerosis, is sufficient
to explain the intolerable nature of life. This will be dependant
upon many other factors, such as the home environment, physical
barriers, the level of care and support available and access to
other individuals living with the condition.
20. If I were to be denied my electric wheelchair,
my adapted home, my accessible vehicle and my personal care assistants,
I might conclude that my life was intolerable. With them I am
able to enjoy a high-quality life.
21. Assisted Dying might be a viable alternative
if good quality palliative and social care becomes available across
the country. At present this kind of support is patchy at best.
If someone chooses death in the absence of such support, their
decision is likely to be influenced by this fact.
22. While the Assisted Dying Bill aims to
address the needs of patients in the last stage of their lives,
I am concerned about the underlying message of the Bill that death
is the preferable solution for people severely incapacitated or
in pain. Much the same message is communicated to older people
who fear being a burden to others, and to terminally ill and disabled
people with inadequate care packages. These views will be legitimised
if the law is changed to concede that they might be better off
dead.
23. I cannot accept the dangers that would
attend assisted suicide in the current climate of opinion. Diane
Pretty was a British disabled person who went to the European
Court to fight for the legal right to be assisted by her husband
to die. What alarmed me and confirmed my fears was the public
and press response to her situation. Every newspaper supported
the "mercy killing" of those with terminal impairments.
24. Assisted suicide is not an issue that
can be resolved by experts alone. On the basis of press coverage
of the Diane Pretty case, the public could be forgiven for believing
that everyone with a substantial degree of disability will inevitably
be deeply depressed and pre-occupied with thoughts of dying. It
is significant that her campaign was never questioned in the media.
25. The consequences of legalising assisted
dying are so dangerous that it cannot be considered until society
is committed to assisted and supported living for the terminally
ill. We must find ways to make life more comfortable for terminally
ill people. We need to question the precise circumstances in which
a person decides life is not worth living. To assume that the
condition itself is the answer is to take too little account of
the social, economic and personal contexts of illness.
26. Society seemed content to consign Mrs
Pretty to the graveyard without looking more closely at the conditions
leading to her wish to die. It is difficult to imagine such a
simplistic scenario were Stephen Hawking to contemplate assisted
suicide. Do we want Hawking to live because of his intelligence?
Where do we draw the line?
27. Despite advances in modern medicine,
we are all still fearful of serious illness and to any impairment
that may reduce our capacity either physically or mentally. This
includes even the aging process. Physical impairment flies in
the face of our fixations with the "body beautiful"
and looking and staying healthy. We spend millions on cosmetics
and other remedies to perpetuate the myth of youth, while closing
our eyes to social pressures that lead many people diagnosed with
terminal illness to view death as the preferred option. I will
feel safe only when society recognises the benefits of creating
inclusive communities which embrace physical and mental diversity.
Only then can we realistically consider the protective measures
that need to be in place to ensure the viability of assisted dying
legislation. When the debate and resources and framework are properly
in place so that people can live with terminal illness, then we
can consider options for people who persist in their desire to
die.
28. We exacerbate a culture where death
is considered an answer before we look at how society can incorporate
and support such lives within the mainstream. I have been contacted
by many disabled people who are still concerned about the potential
consequences of this Bill—concerned that people with terminal
illnesses may be put under pressure, overt or covert, to choose
death rather than be a burden on relatives or the state. Physical
and mental diversity are part of the human condition and most
of us will have to face up to terminal illness before we die.
We can face up to it or fear it. These are complex issues, and
there is no easy consensus. The visibility of disabled people
who are contributing to the welfare and productivity of society
encourages able-bodied people to be more compassionate and constructively
facilitative.
CONCLUSION: VALUING
LIFE WITH
TERMINAL ILLNESS
29. If we agree that all human life is of
equal value, then we must put our energy into ensuring that our
environment and social systems support the inclusion of terminally
ill people's lives. The campaign for this Bill is dangerous because
it reinforces the current unequal value on life and leaves people
like me feeling very unsafe.
30. The dangers of the current negative
social response to terminal illness and disability not only threaten
our chances of survival but also mark us out, sometimes fatally.
I have already described my own close call with the view that
I would be better off dead. It would appear my experience is far
from isolated. My consultant neurologist told me that Diane Pretty's
campaign made his job more difficult. It planted a seed of doubt
in the minds of his patients that their lives will not be worth
living once their conditions deteriorate and, inter alia,
the most logical response to that would be assisted dying.
31. Instead of seriously considering all
aspects of independent living, this legislation encourages assisted
dying before we have fully addressed questions of interdependence
and assisted living. Most of society sees people with terminal
illnesses and disabilities as people who are flawed and without
dignity. But we see ourselves as a vital and proud community,
with values of our own that enhance our quality of life, values
that could enhance life for all.
32. In addition to this written evidence,
I am willing, and respectfully request permission of the Select
Committee, to give an oral submission of evidence at an appropriate
date.
"JANE CAMPBELL'S
AUTHORITY TO
GIVE EVIDENCE"
I, Jane Campbell, am a Commissioner of the Disability
Rights Commission (DRC).
I am the Chair of the Social Care Institute
for Excellence (SCIE) which is an independent government-funded
organisation dedicated to improving the quality of social care
across England and Wales.
Before joining SCIE I was at the National Centre
for Independent Living (NCIL) where I founded and Co-Directed
the project for six years.
I was Chair of the British Council of Disabled
People (BCODP) from 1991 to 1995 and saw the organisation through
some of its most pioneering work in the field of independent living,
civil rights, peer counseling and equal opportunities.
I have also held a number of honorary posts.
The following is a select list:
1991-2001: Governor of National Institute
for Social Work.
1995-2001: Parliamentary Representative
of "Rights Now".
1991-date: Trustee of Disability Awareness
in Action (DAA), an international public education initiative
based on the 1983 UN World Programme of Action on Disability.
I have undertaken relevant research commissioned
by, among others, the National Council for Voluntary Organisations,
The Policy Studies Institute, Help the Aged and the Joseph Rowntree
Fund.
I have undertaken relevant project management
for: Camden Borough Council, Coventry City Council, The London
Borough of Newham, Harrow Social Services, London Borough of Westminster
Social Services and others.
In 2003 I briefed peers and made submissions
on Lord Joffe's Patient Assisted Dying Bill.
I have books written on various subjects, including:
Disability Politics (with Mike
Oliver), Routledge, 1996.
Good Guide to Disability Training,
CCETSW, 1990.
Direct Routes to Independence,
JRF, 1999.
My recent activities also include the following:
working with Dept of Health's Modernisation
Agenda regarding NHS awareness with view to providing training
and guidance.
advised Association of Social Service
Directors on Independent Living Schemes and User Involvement.
assisting National Council for Voluntary
Organisations via seminars and consultations with their work regarding
the new Charity Commission Guidelines.
member of the Government's Technical
Advisory Group on framing Government legislation for Social Service
Direct Payments and Regulations and Guidance member of the General
Social Care Council Advisory Group.
member of the Joint Implementation
Group for SCIE.
member of the Ministerial Disability
Advisory Group chaired by Maria Eagle MP, Under-Secretary of State
for Disabled People.
1 "Global Perspectives on Independent Living for
the Next Millenium", an international summit conference on
independent living, Washington, DC, 21-25 September 1999. Back
2
The full list of principles, known as "The Washington Declaration"
can be accessed on the Independent Living Research Utilization
website: www.ilru.org/summit/index.htm Back
3
Personal communication. Back
4
Personal communication. Back
5
R Hurst, "Ethics and Disability, Celebrating Diversity",
Paper to 5th World Congress on Bioethics, Solihull (UK), 2000. Back
6
R Daw, "The Impact of the Human Rights Act on Disabled People",
Report prepared for DRC & RNID, 2000. Back
7
I Basnett, "Will to live wins over the right to die",
Observer (March 2002). Dr Basnett is now Deputy Director for Public
Health, London Northeast NHS Regional Health Trust. Back
8
Marilyn Golden, a policy analyst writing for the Disability Rights
Education and Defense Fund (DREDF) in the USA summarises the case
against the legalisation of assisted suicide in a succinct article
available on the internet "Why Assisted Suicide Must Not
Be Legalized": http://dredforg.assistedsuicide.html Back
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