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Ethics and abortion
for fetal abnormality
By Agnes Fletcher, Peter Garrett, Raanan Gillon, Hilary
Rose and Ann Furedi
Introduction
What follows is a transcript of an event held at the Oxford
Union in February 1998. At this event, titled Ethics and
abortion for fetal abnormality, a number of individuals
with influence in the discussions about abortion and disability
put forward their different views on the subject. We felt
that since what we perceive to be the key themes in the
debate about abortion and abnormality were all raised in
one place, it was worth publishing the proceedings of the
event, to give a wider audience access to what was said.
Thanks are due to Maxine Lattimer for her work in transcribing
the event.
Ellie Lee:
This discussion has been organised jointly by the Oxford
University Pro-Choice Forum and the Oxford Union. It is
positive that the Union decided to host such an event, because
it is important that there are forums made available where
those of us with an interest in ethics and abortion can
thrash out some of the issues. I would like to emphasise
before we go into the discussion that this is a roundtable
discussion rather than a debate. We have people contributing
to the discussion who hold a variety of different points
of view. The point of this event was to have all those different
opinions raised here, and for us to then work through some
of the issues. So we do not really have 'sides' as such,
rather a range of opinions.
Our first speaker is Agnes Fletcher who is a disability
rights activist and worked until very recently for Disability
Awareness in Action which is an international disability
and human rights organisation. She is now a lobbyist for
a different disability rights organisation. Our second speaker
is Peter Garrett who is the LIFE research director. Our
third speaker is Professor Raanan Gillon who is professor
of medical ethics at Imperial College, the editor of the
Journal of Medical Ethics and part-time practising GP. Our
fourth speaker is Hilary Rose who is a feminist writer on
medical technology and reproduction, and is also a visiting
research professor in sociology at City University. Our
final speaker is Ann Furedi who is the director of Birth
Control Trust.
Agnes Fletcher:
Thank you very much for that introduction and for the invitation
to speak tonight. My central point is that the rhetoric
of choice about selective terminations on the grounds of
fetal abnormality only becomes a reality when all choices
are adequately supported and when medical and other information
and advice is as non-directive as it can be. I do not believe
that this is the reality in reproductive services today
and I do not believe that this bodes well for the future,
as more and more genetic markers for particular characteristics
become available.
My approach can be defined as a disability equality perspective.
This perspective derives from a definition of disability
as a form of social oppression experienced by people with
impairments, or people perceived to differ from an idealised
norm of what it is to be human. It is a perspective which
is related directly to my own experiences as a disabled
person with several impairments at least one of which I
know to be inheritable, and to my involvement with national,
international and grassroots disabled people's organisations.
I want to try to explain to you why many disabled people,
including those like myself who are feminists, and who support
safe and accessible abortion facilities, feel uncomfortable
about selective termination on the grounds of what is called
fetal abnormality. Many indeed feel more than uncomfortable.
They feel angry and anxious, and those feelings, however
unfounded some might believe them to be, deserve to be recognised.
Disabled people's anxieties spring from past abuses of medical
science and from current practice within reproductive policy,
both of which can be defined as eugenic. Some people argue
that talk of eugenics is unhelpfully alarmist, and I am
not suggesting that we are on the brink of state atrocities.
Nevertheless just as geneticists look at our family histories
to make predictions about the future, a look at disabled
people's collective history can inform us of why people
without power and frequently without a voice in policy making
may fear developments in medical science.
What I have to say next will be quite familiar to most people
so I will be brief. The early part of this century saw sterilisation
programmes in Europe and the US principally for 'mental
defectives' as they were called. These people were seen
as a drain on society and perceived as posing a threat on
the grounds that they could contaminate pure breeding stocks.
There were strong racial and class undertones to this eugenic
ideology but a fear of idiots contaminating the race was
central to policy certainly here in the UK. In Germany in
the early 1930s the Nazis sterilised about 400 000 disabled
people.
Next a list of genetic and psychiatric conditions was drawn
up for which killing was permitted. Classed as 'genetic
criminals', thousands of disabled people were murdered and
the sophisticated methods of mass killing developed were
later used to destroy other groups with characteristics
seen as hereditary and undesirable. Eugenic ideas continue
today at the level of enforced state policy only in China.
In countries like Britain, many disabled people see a lack
of support for their rights and dignity expressed most recently
in attacks on disability benefits. They live in a culture
of oppression that devalues and dehumanises them, and that
sees racial, sexual, physical and intellectual differences
as a threat to individual and state integrity. Disabled
people see pre-natal screening programmes as both part of
and contributing to that culture. Globally, more than 80
per cent of impairments are caused by environmental factors
relating to poverty and inequality, such as malnutrition,
unsafe work practices and polluted water. Yet the holy grail
of the human genome is presented as the answer to disability
at a population level.
Tests during pregnancy are offered to the majority of women.
There is evidence from the National Childbirth Trust of
strong pressures on parents to test and to terminate in
the case of a positive result. Some of the pressures to
abort are related to directiveness in counselling and prejudice
on the part of some medical professionals. Others are indirect
financial and cultural pressures. Many people who strongly
support the existence of abortion services feel less sanguine
about widespread attempts to screen out particular characteristics.
Sex selection is objected to in part because it relates
to a social statement about the quality or value of a female
fetus. There was outcry last year at the possibility of
screening to predict future sexual behaviour and the prospect
of terminations as a result. Yet if abortion is morally
acceptable why should such selective termination be unacceptable?
I see the logic behind that question even as I feel for
gay friends whose experience of living in a heterosexist
culture and of discrimination is exacerbated by such Brave
New World prospects.
In parallel to the sense that technology may be used to
endorse prejudice, many disabled people are concerned because
the current UK law allows termination of pregnancy on the
basis of impairment up to the moment of birth, while abortion
for other reasons must take place before 24 weeks. Surely
as the range of characteristics detectable through genetic
technology increases we must at least define 'serious handicap',
the term used in the 1990 abortion law, more carefully.
Disabled people feel these dilemmas very strongly. They
believe that the ever increasing allocation of resources
to predict more and more characteristics in-utero sends
a strong message about our worth, and that this is reinforced
by the cost benefit analyses that often follow. When you
hear that a test for a particular condition has been developed,
and you have that condition or you know someone with it
that can evoke a feeling of persecution, which may be unwarranted,
but is nevertheless genuine.
The message is that such a person is automatically undesirable,
that life with that impairment is not worth living. Dan
Quayle once said that prediction was difficult, especially
about the future, but the widespread terminations of pregnancies
affected by Down's Syndrome and Spina Bifida surely provide
some evidence of the likely future course of prenatal genetic
screening. I read yesterday that more evidence had just
been found of the genetic marker of dyslexia. The report
referred several times to 'sufferers' but what we in the
disability movement would say is that suffering for someone
with dyslexia is to a large degree a question of social
stigma. The problem is located in the social context in
which people find themselves and not within the individual.
This holds true for all impairments to a greater or lesser
extent. Biology need not be destiny but all too often for
those who are sent away to special schools, teased about
their appearance, sacked from jobs without redress, turned
away from cinemas and restaurants as a fire risk, or because
they are seen as upsetting to customers, biology is destiny.
I am not anti-science and I am not anti-abortion but choice
should mean choice. Full information should be available
within the context of equality. We are far from achieving
human rights for disabled people, we are still a relatively
young movement. It has been part of that fight for rights
that allows me to adopt a pragmatic approach to selective
termination. Yet I remain concerned about the wholesale
screening out of people who share particular characteristics
and that the language of choice will be rhetoric, not reflective
of reality until disabled people are afforded dignity and
independence. It is difficult to articulate but there are
positive aspects to the experience of impairment, to living
with the reality of human frailty and the inevitability
of death. To be impaired is the fate of all of us at some
point in our lives, it is quintessentially human. The drive
for bodily perfection and to slay death and disease may
be important human impulses but stamping out differences
is damaging to us all. In common with others I have found
that the pain and fatigue that result from my impairments
bring an intensity to other aspects of my life, allow me
to focus on my priorities and appreciate the good things.
So, it is time to nail my colours to the mast. What do I
believe? I believe that a woman's right to choose to terminate
a pregnancy or to continue it is absolute, and her reproductive
choices should be supported whether or not she is disabled
herself. Impairment is one of the grounds for termination,
others are timing, finances, partner status, age, size of
family and career. However choices about whether or not
to parent a disabled child are not adequately supported
and termination should not be advocated by medical professionals
as a routine solution to any of these problems without adequate
exploration of the alternatives. I believe that although
a fetus has no rights in law, in a sense the current law
can be said to discriminate against the fetus suspected
of having an impairment. A fetus whose actual or potential
impairment status is unknown becomes a person at 24 weeks
and cannot therefore be terminated unless this is warranted
by considerable physical risk to its mother. The fetus thought
to be impaired can be terminated at any point up to term
even if it is capable of being born alive.
Disabled people are angry about this anomaly. I believe
that information available to prospective parents, the context
of decision making, the pressure to test and to abort make
the notion of free choice less obvious. The lack of access
to society and support for disabled children and adults
mean that in fact many parents feel they have no choice
at all. I believe that disabled people need to provide information
about living with impairments and being disabled, to separate
out the medical aspects from the social experience and to
promote the idea of disabled people as whole and real, not
walking or wheeling diseases.
I believe that we need to listen to what the people themselves
say about living with impairment and not rely solely on
doctors or media images, both of which may be misleading.
I believe that we have to recognise that impairment is a
continuum and that everyone will make a personal decision
about what they find acceptable but we must challenge the
automatic equation of impairment with misery. We must actively
support the right of people to choose to continue affected
pregnancies, much more actively than at present, while upholding
women's right to early safe terminations without stigma.
I believe we must oppose social and cultural pressure to
screen and to terminate routinely while defending individual
decisions to do so. And I believe that while striving for
good medical care for all and remembering that the majority
of impairments are preventable with good nutrition and health
care and the alleviation of poverty, we must advocate a
society which accepts and respects that differences of appearance
and ability are part of being human, that illness and impairment
are part of life, that independence and dignity are achievable
for all.
I want to stress that I am not seeking to undermine abortion
rights. But as a disabled woman with an impairment which
is inheritable who is proud and happy to be just who I am,
I must raise my concerns and the fears and anxieties of
other disabled people even less articulate than myself and
certainly without the privilege of my education and upbringing:
people who are confined to institutions, people without
any educational qualifications or job prospects, people
written off at birth as half human to be pitied and locked
away. The last 30 years have begun the process of unlocking
disabled people, quite literally in many cases, and unlocking
their potential. Many disabled people do feel that we need
to create an accessible environment and equality for all
first, but it will not be long before tests are used to
seek out and destroy characteristics such as predicted undesirable
height, weight, skin colour or sexuality as well as what
we now define as disease. Some disabled people believe that
the battle for disability equality is more important.
I accept that may be as a result of their particular and
terrible experiences of social oppression. I acknowledge
their feelings. For myself I believe that it is wrong to
force women to undergo medical interventions against their
will: that is why I am against the sterilisation and coerced
abortion that is many disabled women's experience, and that
is why I have no wish to force any woman to endure an unwanted
pregnancy. However, more and more wanted pregnancies may
become unwanted as prediction of quality of life on the
basis of genetics alone gains increased currency and the
impact of social and economic factors on well-being is ignored,
and as long as the choice to parent a disabled child in
comfort and dignity is not available to the majority. Current
threats to disability benefits leave me with little optimism
on that score.
Thank you for listening today. I ask you to ensure that
other disabled people's voices are heard, those who live
in institutions, those who live without the benefit of the
education I have had, those whose fear and sense of being
devalued makes them less polite and more militant that this
Oxford graduate is compelled by her own experiences to be.
As a movement we are only just beginning to debate issues
of medical ethics. We have been busy trying to secure freedom
from discrimination and basic civil rights, busy raising
the consciousness and self esteem of ourselves and those
even further down the status scale. We need to have the
space to debate these issues and so I ask you to value the
perspective that disabled people can bring to debates on
ethics and to value the perspectives they can share on what
it is to be human.
Raanan Gillon:
I want to make a few points before I get substantive as
it were. The first is that in ten minutes what I can say
is going to be a sketch, so we can hammer out some of the
issues after that. The second point is that it is not a
debate. I want to reiterate that we are trying to analyse
and assess some of the issues.
I am coming to this discussion from the perspective of medical
ethics, but also from a perspective of a practising GP,
and the question we are discussing is one that arises in
my everyday work quite often. The third thing I want to
say is that abortion is not necessarily a tremendous tragedy
in my experience. I have never had an abortion, but in my
experience of dealing with people who want abortions early
on, very often it is not the great tragedy that anti-abortion
people often make it out. In contrast, when it is a question
of aborting for handicap or disability later on in the pregnancy,
and when the woman has actually wanted to have that baby
then it usually is a pretty tragic experience. So what I
say when I start to get more analytical about this issue
does not imply that I am ignorant of the fact that in practice
it is not just the logical discourse that we should be looking
at, but also the very deeply powerful emotions that often
go with it.
Finally, by way of introduction I want to say is that it
seems to me that in the analysis of the abortion debate
it is much more profitable to look at it not actually as
a disagreement about morality. It is actually I think a
disagreement about scope of morality. We all agree that
we should not kill each other or we should not unjustly
kill each other. What we disagree about quite radically
is what we mean by 'each other', that is to say the scope
of this 'right to life' as it is often claimed. It is the
right not to be unjustly killed that is radically disagreed
about. I will suggest to you that the disagreement turns
not primarily on moral grounds but on metaphysical, on philosophical
and on theological grounds, and on some mixture of the three.
So if we can detach ourselves from the implications, which
of course are very moral, and realise that it is actually
a very complex philosophical and theological issue it may
make it easier not to assume that because somebody disagrees
with us therefore they are wicked, which tends to be the
assumption.
There is a huge range of positions about the abortion debate,
I am not going to go through them but just to remind you
that at one level there are people who think that we are
a person from the moment of our conception and that we should
be treated equally in that respect, as people with all the
rights that people have and afford each other. At the other
end of the spectrum there is the notion that you do not
become a person until after you are born and I will nail
my colours to the mast straight away. I am at that end of
the spectrum. I think that you need to have a capacity to
be self aware to be a person and I do not believe you have
a capacity to be self aware even when you are born. It is
at least several months after birth that one develops this
capacity.
There are a huge range of positions however, and in between
the law actually specifies that legally speaking you are
a person when you are born, but it gives you certain rights
before you are born, as was pointed out. Those rights could
be overturned not just because of severe handicap but also
because of severe danger to the life of the pregnant woman.
That is the position I am going to be starting from and
I expect we will be hearing a contrary position fairly soon.
What about some counter arguments to that position? The
first one I would like to consider is this notion that to
abort in the context of disability or handicap is actually
eugenics. I see eugenics as a social decision to produce
some sort of social change across the whole of society with
some sort of implementation of laws to achieve that. That
is a very different matter as I see it, from individuals
deciding that they want to bring into the world a certain
sort of person and not other sorts of people. I will argue
in a minute that this is quite an important distinction,
and my own preference is essentially a libertarian one that
allow individuals where possible to choose for themselves
the sort of reproduction they want.
Set against that will also be a gradualist developmental
approach, which reduces that choice the more developed the
embryo, fetus and young, new-born baby becomes. Roughly
speaking, the position is that very early on in its development
when it is newly fertilised, an ovum is not anywhere near
a person because it is nowhere near having the capacity
to be able to be self-aware. As it gradually develops, it
becomes more and more like that, and the abortion law, taking
into account the development of that individual fetus, should
represent an ever increasing concern to treat it more and
more like a person. The rights inherent in this developing
human being, are to be set against the libertarian approach
that I was arguing for, where the woman has her own choice
about whether or not to continue with the pregnancy.
The second counter argument that one hears often is about
'potential'. It is not yet a person some people will say,
but it has the potential to be a person. I will just briefly
say that I do not think this is sufficient to justify treating
whatever has the potential to be a person, as though it
already was a person. We simply do not do that in all sorts
of other circumstances, as John Harris points out, we all
have a potential to be corpses. That certainly does not
justify treating each other as though we already were.
The next sort of argument that one hears is 'slippery slope'
arguments and I think that is partly what we were hearing
in the first contribution. There are two sorts of slippery
slope. There is a logical slippery slope which means that
if you accept X then you are logically committed to accepting
Y. Then there is what they call the empirical slippery slope
where it does not necessarily follow, but as a matter of
fact it probably will follow, that even if X is okay nevertheless
Y which is horrible will happen. Let us look at the logical
slippery slope first because quite often you hear this argument.
This argument says, for example we were all embryos, and
we were all fetuses and we are all jolly glad that we were
not bumped off when we were embryos and fetuses because
here we are having a nice life. Therefore it is very unreasonable
to bump off any other embryo or fetus. We hear another version
of the same thing, giving the example of Beethoven. You
get the story of Beethoven who apparently had all sorts
of disabilities, and if you had abortion for disabilities
in Beethoven's time you would not have had Beethoven, and
all the wonders that Beethoven produced. Then there is the
same sort of variant which says I am a disabled person,
I am very pleased that I was not aborted and therefore let
us extend the same sort of concern to all fetuses with disabilities.
The first thing to note about this argument is that it applies
equally well to contraception. So if you are going to run
along with that line you had better realise it has some
pretty important implications because it is just as strong
against contraception as it is against abortion. The second
point is that actually there is a logical asymmetry which
I think is very important to recognise. If you believe that
abortion is sometimes justified because the fetus does not
yet have the rights that you and I have, and it does not
have full moral equivalence, then it is quite possible to
accept that the fetus although developing towards being
a person, is not yet a person even though it is quite accepted
that it is a human being. There is no doubt I think that
is a human being.
If that is the case it is quite consistent to say I am very
pleased that I who was once an embryo and fetus was not
aborted, while at the same time saying it is not the case
that all embryos and fetuses will become persons. So there
is simply no logical symmetry between the argument of looking
back, yes we were all fetuses, and the argument of in imagination
looking forward on behalf of a fetus or an embryo and saying
if it is allowed to develop then it will become a disabled
person, and then it will be jolly pleased to be alive. It
is perfectly true but we are only talking about possible
people or potential people not about real people.
Therefore there is no logical connection between the two
claims that firstly we are here and are pleased not to have
been aborted, and secondly therefore all embryos and fetuses
should not be aborted. That is pretty important to understand.
It is particularly important for people who have disabilities
to understand. Now I need to come to the second part of
the argument which is the empirical slippery slope.
We have heard a convincing account of the fact that in practice
people do not accept this argument. They feel quite passionately
that they are being discriminated against. My response to
that is try and understand that there is no need to feel
discriminated against. There is no logical obligation to
feel that, just because somebody decides not to have a baby
because it has a disability when it is a fetus. There is
no reason to think that therefore it follows that this person
will have hostile intent and hostile attitudes towards people
who have got disabilities.
On the contrary, in the view that I am proposing if you
are a person then you have the rights of a person and indeed
the respect of a person regardless of whether you have disabilities
or not. There is simply no connection between the earlier
position when you are not yet a person and the moral respect
that should be accorded to you when you are.
The last part of what I will say is that when it comes to
deciding to have a baby, and here I would like to agree
with a pro-life argument that I have come across, do not
kid yourself that you are going to have an abortion in the
interests of that child. That is something that you quite
often hear: we have to have an abortion because the fetus
has got a disability or handicap and therefore it is in
the fetus's interest to be aborted. If you are really genuinely
concerned with the interests of the fetus as a child and
as a person to be, then do it properly. Put yourself into
the mind of this person in your imagination when he or she
has been born and has grown up and has thought about it.
Then say to yourself 'What would this person decide in terms
of the disability concerned, and the alternative for that
person not to exist at all?' I think we have got plenty
of evidence that people when confronted with that alternative
are jolly pleased that they are alive, disabilities or not.
There may be some disabilities that are so awful, like Lesch
Nyhan syndrome where people are in constant pain all the
time, that everyone would agree potential sufferers would
prefer not to exist or to be dead rather than have constant
torture. Examples like these are very few and far between.
For the vast majority of disabilities, if you are really
interested in the interests of the person you must let that
person decide. That is usually the best way of finding out
what people think. That is in no way to be against making
decisions for abortion on the grounds of disability, just
to realise, as I am claiming, that you are doing it because
that is the sort of choice that you wish to make as a potential
parent. You do not want to bring into the world a new person
with these sorts of disabilities. It is your own autonomous
decision based on your own autonomous views that are driving
you, and not I would plead a spurious assumption that you
are actually acting on behalf of this person who is not
to be.
Peter Garrett:
I would like to paint a picture with three parts. In the
first part I would like to set out my stall and tell you
something about the perspective I am coming from. Then after
that I would like to go back to fundamentals, and address
the question of what is the status of the human embryo,
because that will automatically encapsulate the status of
the embryo with special needs. In the third part I would
like to lay before you some objections to the view propounded
by Professor Gillon, that we can separate society's attitude
to the already born special needs person from the attitude
of society to the not yet born special needs person. I would
like to suggest to you a fairly bleak picture of the future,
some of you may recognise it as already being present with
us today, and that bleak picture I think collapses the attempt
to distinguish the attitude of society to the already born
and the not yet born.
I am a member of the Labour Party and I regard women who
are pregnant in difficult circumstances as being somewhat
between a rock and a hard place. My great hope on May 1st
1997 was that the champions of socialism, the champions
of the downtrodden and the oppressed would march into office
and they would immediately start to improve the conditions
for women and children in society. I hoped they would immediately
start to improve the provision for women during pregnancy
and after the birth of their children. I felt that there
was some merit in the argument of a friend of mine who said,
although she is an Emily's List candidate, that the number
of abortions will be reduced under the Labour administration
because their social policies will be fantastic. For those
of you who do not know an Emily's List candidate is somebody
who is female and is committed to a pro-choice stance, or
you might term it a pro-abortion stance.
Tragically, one of the things that Labour has contrived
to do is to reduce benefits to single mothers. This makes
a nonsense of the suggestion that under Labour social policy
will move in such a direction that it will be easier to
have one's child. In fact it is now easier to go for abortion.
If Frank Dobson the Health Secretary has his way then it
will be even easier. I would argue that the Labour Government
is creating a force which pushes women in the direction
of abortion.
As we have already heard from Agnes Fletcher we need to
give real choice. Total choice depends upon making sufficient
financial wherewithal available, and it also depends upon
full disclosure of information. It depends upon allowing
young people making the decision between abortion or life
the opportunity to listen with a stethoscope to the heartbeat
of their unborn child. It means letting young people making
decisions about abortion or life see their child on an ultrasound
monitor. My confession is that I am still a member of the
Labour Party. The tragedy I believe is that we as a society
are not moving in a direction of freeing people up for total
choice, rather we are confining and reducing choice and
we are forcing many women into having abortions because
of straightened financial circumstances. I think that is
something for which we, as a so-called modern and enlightened
society, should be thoroughly ashamed.
Let me come on to the notion of the status of the human
embryo. We were told that we should not be cajoled into
believing that just because we are all sitting here having
a nice life, we should also wish to continue to support
the rights of those that have not made it thus far. I feel
that we have to regard intellectual analysis in this area
as being not purely analytic. If you closed your eyes and
reflected on the nine months you spent in your own mother's
womb and then answered honestly the question how much of
that nine months do I want to disown, as not being a continuum
as part of my life, most of you would come up with the conclusion
that your life did indeed begin at conception.
The situation regarding the status of the human embryo is
of considerable importance because the issue is purportedly
addressed in 1983 by the Warnock Commission. In fact the
Warnock Commission found that the question was far too difficult.
Rather than trying to deal with the hoary ontological decisions
that needed to be dealt, with the Warnock Commission said
instead let us proceed straight to an analysis of the moral
status of the embryo and how it should be treated. As a
result we now have this amazing hodgepodge in British law.
It says that you can destroy the human embryo up to 14 days
in order to gather scientific information, although during
that time it has some special designated status and if anybody
is found to be keeping human embryos beyond 14 days then
the police have the right to impound and destroy them on
the grounds that they have now become fully human. This
to me seems to be analytically ridiculous, and we should
perhaps go back to the Warnock Report and the more recent
documents looking at the status of cloned human embryos
etc. We should ask for that ontological question to be readdressed.
Professor Gillon's tenet that we should believe that those
who are persons are only those who are conscious, is for
me extremely difficult because I believe that would lead
rapidly to a society which acknowledges infanticide. I would
also be very worried about going to sleep at night because
if I am not currently expressing my consciousness perhaps
I am vulnerable. Maybe he would come back later and explain
just how wide his libertarianism would extend. Would it
in fact be the case that babies in their cradles sleeping
or otherwise would be open to some kind of application of
Spartan law where they could be done to death if they did
not pass muster in some libertarian lottery.
Let me come onto the central point, to discuss the position
not of embryos in general but of those embryos that have
special needs. It is the case in British law as Agnes pointed
out, that they are discriminated against already. You can
abort a child which is less than perfect right up to the
moment of birth. The tragedy of the votes that were taken
in 1990 is that the House was completely divided and the
speaker had to cast a deciding vote in favour of not producing
a list of those disabilities and special needs which would
warrant abortion. So we have a situation in which you can
in fact be aborted up to birth for a harelip or a congenitally
displaced hip.
That itself is a scandal to our society and we need to go
back and address that. Let me tell you of a recurring dream
I have. In the dream I am getting onto a train and my 13
year old son who is currently three, is saying to me: 'What
is that strange baby doing sitting on that woman's knee
at the back of the train carriage?' I say to him be quiet,
be quiet because it is self evident to me that the baby
sitting at the back is affected by Down's syndrome. Just
after we sit down a woman gets onto the train with her 8
year old daughter, and her daughter says: 'What is that
funny looking woman doing with that baby at the back? What
is that baby doing, it looks so strange?' And the mother
says to the daughter, let us find out. She then says to
the woman at the back of the train: 'What do you think you
are doing with that thing? Have you not heard about pre-natal
diagnosis? Not only am I affronted as a tax payer but my
daughter has to look at that monstrosity. You have a duty
not to bring people like that into the world because they
will not be able to cope with the taunts in the playground.
You have affronted me, you have affronted my child, you
have affronted your own child.'
It is deeply unpleasant to be involved in that even as a
role play, but I believe that we can not simultaneously
go down the track of cooing in a politically correct fashion
about the special needs people who are already born and
at the same time seeking out and destroying those with the
same special needs as they live inside the womb of their
mothers. The British Set-Cookie: WEBTRENDS_ID=137.222.252.61-3505116880.29271345;
expires=Fri, 31-Dec-2010 00:00:00 GMT; path=/ Medical Journal
in 1992 declared that a new method of seeking out and destroying
babies with Down's syndrome had been found and they proudly
announced that the lifetime care costs for a baby with Down's
syndrome would be £72 000. Then they announced that the
search and destroy costs would be £24 000. So the bottom
line is that you, ladies and gentlemen and society at large,
save £48 000 every time we kill a baby with Down's syndrome
in-utero. Currently 19 couples out of 20 choose to abort
babies who have been found to have been suffering from Down's
syndrome in the womb. 89 per cent of those who find that
their children unborn are affected by Spinda Bifida choose,
as Bianca did in EastEnders, to abort the child.
I do not believe in the hermetic separation of our societal
attitudes to the already born special needs child and to
the not yet born. I do believe that 10 or 15 years from
now when people from our generation and the generation that
follows us look upon children with special needs in society
they will ask why these people are still with us in the
wake of technological advance.
There is much more that could be said but ten minutes is
all that has been allocated to me. I ask you to choose between
a philosophical system which regards only those who are
conscious as being worthy of life and a philosophical system
which instead looks at the ontological problem of the human
embryo and says yes, in the light of modern genetics we
can see something which is like ourselves, we can see something
which has a self directed genetic mechanism with 90 000
interacting genes which, if left alone, will develop as
you or I are developing. I would leave you with one final
thought. I believe that the 'not yet' argument fails completely
and we should examine the 'not yet' argument. The unborn
child is not yet a person but even if it is not yet a person
the fact that it is on its way with its self directed mechanism
to becoming a person means that we as a moral agent should
not take the risk of becoming murderers by killing it.
If you find a building and you wish to demolish it how carefully
must you check to make sure it is empty of persons before
you do so and if there is any doubt left in your mind when
you begin to swing the very heavy concrete blocks that will
demolish that building does that doubt not indict you of
murder, for as Petulian said to be prepared to kill what
may be a man is to be prepared to kill a man.
Hilary Rose:
I have spent quite a lot of time in Scandinavia and also
I am a sociologist and a feminist and this means that I
live in complexity. Therefore the kind of fundamentalist
purity offered by our last speaker is something I can not
deal with. Let me tell you why. If you are in Scandinavia
and you go into a supermarket around 11 o'clock in the morning
it is full of juvenile delinquent disabled teenagers in
the care of able bodied teenagers and they tear around the
shops in classical teenager way. What I am taking about
is a society which actually acknowledges disability in people,
acknowledges impairment, and actually builds a society physically
and socially which makes place for the diversity of human
beings. Having said that let us try and get a grip on things.
Only three per cent of all disabled people are genetically
disabled. So the big worry is should be about not just the
three per cent, but the whole 100 per cent. As was beautifully
pointed out by the Americans, at best we are all TAB's,
which means Temporarily Able Bodied people. Most us end
up as very dependent people, and some of us are dependent
in the middle of life. So that is the background to this
discussion.
What I think has happened, which I am very interested in,
is that we have shifted from what I call 'state eugenics'
to 'consumer eugenics'. Everybody uses the Nazis as the
example, but of course as has been very properly pointed
out state eugenics was everywhere, certainly in Britain.
In Britain it happened by keeping people who were then called
mentally handicapped locked up, and worse than that for
those described as 'cretins' and so forth, keeping them
apart sexually so they could not breed. This was the classical
British solution proposed by the son of Charles Darwin,
and there was a long history of Social Darwinism everywhere.
What we had a that point was the state moving in and forcefully
sterilising people.
I think that historic period has gone. There were pluses
and minuses about that dreadful historic period. Part of
it was the deep relationship between the early welfare state
and eugenic thinking. There are great difficulties for us
here. The doyen of welfare states, Sweden, was also the
home of eugenicism and is also the home of the most brilliant
provision for disabled people: that is what complexity is
about.
What I am worried about at the moment is what I call a culture
of consumer eugenicism and that is what leads me to have
curious sympathies with Peter. What I think has happened
is that in our culture we now have a very high tide of libertarianism:
the ideology of the market has won out. We have lost state
eugenicism, I do not think anyone would now tolerate it,
only poor China suffers. State eugenicism has historically
gone for the moment, although nothing is forever. What we
have instead is consumer eugenicism in which people are
promised, particularly by the media, that whatever you want
you can have if you can pay for it - perfect partner, perfect
house, perfect job, an Armani suit, a designer baby: you
can have anything.
I think what we have got to look at is what the geneticists,
or rather what the molecular biologists, have offered us.
I think they have actually done an enormous amount of harm.
One of the things that fascinated me in listening to the
previous speakers is the assumption that these tests work.
For a lot of conditions they are not clear, and do not show
for sure if there is a genetic fault. What we have got is
an ideology of certainty coming up from the culture of the
new genetics. In fact there is not the certainty this ideology
claims, and actually things are a bit more complicated.
Instead, as genetics advances it shows a picture of increasing
complexity.
The third thing I want to look at, and I have very much
enjoyed some of the reflections on the moral status of the
embryo, is how we culturally construct our understandings
of who we are. In doing so, we take bits from religion,
and religion of course shifts. In early Christianity abortion
in the early weeks was absolutely fine because the fetus
had no soul. What we get now from fundamentalist Christianity
is the idea that the fetus has a soul from the moment of
conception, so we cannot abort. But if you look at the history
of Christianity the theory of the development of the embryo
has changed and it changes in accordance with the best science
available at the time.
As a result, you get this wonderful movement between the
scientific constructions of who we are, the religious constructions
of who we are, and what I would call in many ways the everyday
morality. The picture Raanan describes is what I would call
fudge and that is actually how culture often works. It is
a fudge between religion and scientific constructions, and
constructions of the moral status of the embryo. I think
one has to consider that as really a rather wonderful 'fast
one' that the embryologists have pulled over the philosophers
and the stacks of religious people who were all on the Warnock
Committee.
We also have to accept that we live in cultures, but we
do not live in them passively, we can act on them. One of
the things that we have done, particularly with the power
of the women's movement is to insist that women, not men,
women have the right to control our own bodies. This is
a very peculiar longing at the moment because we also know
that unless you are in a supportive society, notions of
choice do not really exist. You have to do what is necessary.
If the society is completely unsupportive then maybe the
only thing to do is to have an abortion.
It may be that you want to have an abortion because you
did not want to have a baby anyway. It may be that you took
one look at yourself and realised that you were no more
fit to have a baby than, I hate to say it, most men, in
that men still largely escape their parenting responsibilities
massively and dump them on the women. So we have got this
very peculiar world going on.
To conclude, as I see it what we have got to recognise is
the shift towards consumer eugenics which is deeply associated
with the rise of individualism, the rise of libertarianism
and the retreat of the welfare state. That is one of our
very deep problems and that is happening all over the industrialised
countries. The second point is that we need to get a very
clear-eyed view that science is not something neutral in
giving an account of human development as if science was
like the eye of God looking on the world. Science is itself
deeply implicated in cultural values, so when it tells us
that the fetus is this, or the fetus is that, these are
values inside the science, and we have got to understand
that. It does mean, and this is one of the things that I
have learnt in this discussion, that it is actually enormously
difficult.
I want to finish with a little personal piece because I
think it is very expressive of the difficulties of being
involved in these debates. I happen to have a really rather
discrete genetic disorder. I inherited it from my father
who died rather early from it. He was an absolutely lovely
man and I never felt anything other than love for him and
I never felt any sense of anger that he had given this nasty
little number to me. I am also a mother and when I learnt
that I had given this nasty little number to one of my beloved
sons I felt totally anguished. So I think you have to understand
that being inside a situation is actually very complicated.
Nothing other than love and generosity to my father, and
guilt and anguish which it has taken me some time to resolve
as a mother to my son.
I say this not because I want to claim some higher moral
ground. I say it because as a person within a culture (even
a sociologist) I am just part of the culture too. I do not
actually feel that way now. My son and I laugh over it,
and he challenges me quite sharply over these sorts of feelings
as being morally entirely inappropriate. Yet I am being
quite honest when I report them to you because they are
what people feel when they are inside situations, which
is why I say it is not something that is easy.
I want to say one last thing and that is what worries me
above everything else is the growth of genetic testing.
I have an enormous respect for clinical geneticists, and
for people who go and see clinical geneticists because their
family is carrying one of the real horror stories, like
Tay Sachs or Lesch Nyhan syndrome. Then you are in a world
of counselling, support and autonomy. What I am worried
about is mass genetic testing in the ante-natal clinic because
there it does not come with counselling and support. It
comes with deeply held assumptions on the part of the medical
profession that we know what is normal, we also know that
you want normality.
That is the worry because who is in charge of the construction
of normality in our culture is a very deep problem. Could
you actually have done Peter's role play if there had been
a person with Down's syndrome in the room? I do not think
you could have, and I think there would have been an immediate
tough challenge at least if the Down's syndrome person was
anything like those people who I know.
Any woman, hopefully with the support of her partner, who
faces those sorts of situations has to be very aware of
the cultural pressures, the social and economic pressures
which push her to go one way and she has to try and think
about where she actually wants to go. Yes at the last analysis
these things come to us privately and personally and they
are very deep and they are very difficult, but at the same
time we have to be aware that we belong to a society and
there are all sorts of currents lying around.
Ann Furedi:
I think to begin with it might be useful to look at what
we mean when we talk about eugenics and how the discussion
of abortion for abnormality interacts with this. There is
absolutely no question that the 1967 Abortion Act, which
frames the regulations in which abortion is provided, was
an Act fuelled by a desire to practice social engineering
and by an assumption that fit mothers should raise healthy
children.
To give some background to the current law, it is worth
remembering that one of the reasons why the 1967 Act became
law when it did, was the influence of people's perceptions
of the thalidomide crisis. Suddenly you had a large number
of babies being born with severe limb abnormalities and
this changed the perception of abortion enormously. The
context was no longer one of backstreet abortions, which
middle class women never thought would happen to them. Abortion
was suddenly placed very much in a framework of discussions
about disability, with people wondering how they would be
able to cope if they knew that they had taken a drug that
would lead to a very severely disabled infant. There was
a very heightened concern about this, which transformed
the level of support for legal abortion.
If you look at the other clauses in the Act, you can see
that abortion law in Britain was framed by a sense of the
importance of a certain degree of social engineering. The
Abortion Act does not allow women to choose whether or not
they have an abortion simply because they do not want to
be pregnant. It makes sure the woman fits certain criteria.
These are basically criteria actually about whether she
can be a 'fit mother', either fit in the sense of being
physically healthy, or fit in the sense of being economically
able to look after a child. I think that when abortion was
legalised it was within those terms, and I think in fact
when ante-natal screening began it was very much the 'search
and destroy' exercise that people have characterised it
as.
I do not think that is the framework in which abortion is
provided today. We are stuck with the old law, and lots
of us are working to try to change that old law. However,
I do not think that attitudes towards abortion, and what
happens when women seek abortion now, are now the same as
in the past, and I want to go on to discuss how I think
abortion is now perceived, especially with regard to abnormality.
First I want to make clear my views on the law as it stands,
to indicate my overall approach to the abortion issue.
I have very profound ethical problems with the way that
the 1967 Act works at the moment. I have very profound problems
with it from the point of view of the woman with a pregnancy
that she does not want to continue. It is completely intolerable
that the law can say to a woman who is 24 or 25 weeks pregnant
that she cannot have a termination at that stage, yet it
would permit her to have a termination for the same reasons
at 18, 19 or 20 weeks pregnant. What happens in between?
What is it that happens between 23 weeks pregnancy and 24
weeks pregnancy that means that suddenly there is a cut
off point?
I very much agree with the perspective that was put forward
by Raanan Gillon, that what you have throughout pregnancy
is actually a continuity. I suppose you could say that there
are certain defining moments. Whether or not we give them
moral significance is very much up to us. There is the point
of conception when you can say that from that point onwards
you have something that is genetically distinct, but whether
or not we choose to give that any moral significance is
really up to us. Actually we do not, and in law a woman
is not seen as being officially pregnant until the point
of implantation which is some time after the fertilisation
of an egg.
Some people will give moral weight to the differentiation
of cells, when the cells that are to become the fetus become
differentiated from the cells that will become the placenta.
Some women will perhaps feel differently about the pregnancy
form the first time that they perceive fetal movement, and
in fact this is traditionally a way in which a defining
moment in pregnancy has been identified. Before we became
very good at clinically testing pregnancy, that was the
time when the pregnancy was given some kind of significance.
Other people will see birth as being the morally significant
point.
I like the idea of birth as being a point at which you can
at least say that something different has happened. It is
only really from the time that the child has emerged from
the womb that it is possible for society to intervene and
to act and to do something to deal with the life of that
child without potentially interfering with the life of the
mother. That is in fact why I think that you can draw a
distinction between life before birth and life after birth.
It is possible for a woman's bodily autonomy not to be infringed
by action on a child that has been born, where it is no
way possible for that to happen from the moment beforehand.
Now to look at some of the issues that have been raised
about fetal abnormality. I think that there is a real danger
in the current reaction against the old approach of 'search
and destroy' tests, and against the past situation where
people with disabilities were treated in a subhuman way.
There is a dangerous tendency for us to move very much in
the other direction, with a kind of peculiar political correctness
that really forgets some important truths about the reality
of the situation.
I would argue very strongly regarding a point that has been
touched on by some of the other speakers. I believe it is
very possible to differentiate the attitude that one has
to a pregnancy or to a fetus that is affected by abnormality,
compared with born people, including those with disabilities.
I think it is perfectly possible to have one attitude in
relation to the fetus, and to have a completely different
attitude to people who are born and who have a particular
condition. I have no hesitation whatsoever in saying, though
of course my attitude may well change if I found myself
pregnant in these circumstances, that if I found I was carrying
a pregnancy that was affected by Down's syndrome I would
have that pregnancy terminated. I do not want to bear a
child with Down's syndrome and I do not want to raise a
child with Down's syndrome. That does not mean that I think
that other women who are faced with that choice should take
that same decision necessarily, and it certainly does not
mean that I think that people with Down's syndrome should
be eliminated.
What I believe, as a principle, is that any woman who found
themselves pregnant with an unwanted pregnancy for any reason,
should be allowed to end that pregnancy. Now that does not
mean that I think that somebody who has a child that they
find is an inconvenience should be allowed to kill that
child because it is unwanted. That idea does not really
follow through, and I think that it need not follow through
in relation to our attitudes to fetal abnormality.
I think actually our attitudes to fetal abnormality more
reflect our attitudes to illness and are more related to
the way that we feel about other diseases and medical problems.
I do not think that there is any one in this room who would
hesitate about the fact that they think that it is a good
idea for cystic fibrosis for example to be eliminated. Most
people think the world would be a far better place if people
did not suffer from cystic fibrosis, in exactly the same
way that they think the world would be a far better place
if people did not suffer from measles or smallpox or influenza.
That does not mean that we feel that we want to kill people
who suffer from those diseases.
I think that most people perhaps who are supportive of pre-natal
screening see it very much as being a way of dealing with
medical problems. They look at it in the same way as they
look at other forms of medical treatment. As a result, I
very much oppose the idea that pre-natal screening can be
characterised as consumer eugenics. The reason why is that
because I think that when we talk about eugenics, we are
really talking about it ways in which in the past, there
have been attempts to shape society by altering the gene
pool, and to try to resolve social problems through policies
that would affect who was born and who was not born.
I do not think that is at all related to the spirit in which
individual women ask for pre-natal screening, and in fact
asked for their pregnancies to be terminated on the ground
of fetal abnormality. A previous speaker was absolutely
right when they said that termination for fetal abnormality
is done entirely in the interests of the woman. It takes
place because the woman requests it, it is not something
that is imposed on her, and it is carried out because she
feels that she does not want to raise that particular child
at that particular time in her life.
I do not think that women will stop deciding to abort for
abnormality if they are given more resources. It may be
the case that it would make it easier for women to raise
disabled children if more resources were provided for them,
but there are many women who will feel that they do not
want raise a child with a particular disability. Now you
may think that that is a terrible attitude for a woman to
have, for her to be to be that judgmental. In reality however,
when we think about the way in which women and couples think
about pregnancy, and we consider why they become pregnant,
we have to admit that people approach pregnancy with an
idea of the child that they will have in their mind.
When a woman is pregnant she is dreaming of what her child
will be and what that child will become. If a woman finds
out that her fetus is affected by an abnormality which means
that the child that she is carrying can never be that child
that she has wanted, it is very understandable that her
attitude towards the pregnancy may change. You might not
approve of it and you may wish that the world worked in
other ways and that people were not quite so judgmental.
But in truth, it is that particular woman who has to live
with that decision. It is that particular woman who at a
stage in her pregnancy where an abortion involves a labour
like birth, when she has already felt strong fetal movements
inside her, and when she has maybe named the child, decides
to terminate the pregnancy, and this is not something that
she does lightly. It is because she feels very strongly
about it and I think that we have to understand a woman's
reasons for that. We then have to ask ourselves what kind
of society we would be and really what people are asking
of a woman, when they say that women's ability to terminate
pregnancies in those circumstances should somehow be restricted.
Somebody will no doubt raise the point about what I mean
when I talk about 'normal', what I mean when I say that
women do not want perfect babies they want normal babies,
and that often they will wish to terminate a pregnancy because
they perceive that their child would not be normal, it would
be disabled. I actually think that at the end of the day
there is only one person who can make that decision and
that it the woman who is pregnant and who will be responsible
for the rearing of that child. That is why I am very opposed
to the idea of lists being drawn up about what represents
a serious abnormality and what is not a serious abnormality.
In practice, it is a very subjective decision, and with
regard to any particular abnormality, only the woman and
her family know whether or not they can cope with it.
Peter I think raised a notion that a fetus could be aborted
because it had a harelip. Well that is not really the question.
It is really a question of turning to the woman with that
pregnancy and saying to her: 'You cannot abort this pregnancy
because I do not think you have a good enough reason'. It
perturbs me very much when people who identify themselves
as feminists can put that argument forward to a woman: you
cannot abort this pregnancy because I do not think that
this abnormality is serious enough.
Those of us who have campaigned for women's rights have
spent a very long time arguing against doctors who disapproved,
on other grounds, of women's reasons for having abortion.
I think that it is as inappropriate for feminists or disability
rights activists to be as judgmental with regard to abnormality,
as it is for doctors to have disapproved of our reasons
for having abortions because they thought that we should
be eternal earth mothers and produce children every time
that we have sex.
I think that these days we have moved away from an idea
of 'search and destroy'. I think that women are now provided
with far more information and choice. It is not perfect
and we need to make it much better, but at the end of the
day women are not dupes. They are capable of asking questions
if they want to find out information. Women who find out
that they have a problem pregnancy, because the fetus has
a form of abnormality, do not rush into the abortion clinic
to end to pregnancy, because as Raanan said the pregnancy
is very often a wanted pregnancy. It is a decision that
is agonised over and we should represent and understand
it as that, and not trivialise the choices that those women
make. We should to allow them to act in accordance with
their conscience and their value system, and argue for a
framework around abortion that allows for this. We should
therefore allow women the right to make the decision to
terminate on the grounds of fetal abnormality just as we
would support their right to terminate on the grounds that
the child was unwanted for any other reason.
Ellie Lee:
Thank you very much. I am now going to take questions and
brief comments, and then let our speakers come back to them.
I would imagine also that our speakers may have comments
they want to make about what other speakers have said.
Question:
How accurate are the pre-natal tests that are done? Are
they 100 per cent accurate or does it happen that after
the abortion there was nothing wrong?
Raanan Gillon:
I can not give you the figures but it is certainly the case
that sometimes there are false positives and false negatives,
and I think that is part of the counselling process or discussion
process to get people to understand that the risks involved
are probabilistic risks not absolute certainty.
Question:
Some of the speakers have focused on the woman's experience,
but the experience of carrying a Down's syndrome child is
the same as carrying a normal child and it only becomes
different if the child is born. Once it is born it is in
the child's interests to have been born.
Question:
I feel that the abortion debate has been hijacked by pro-abortion
feminists. It is not fair to say that any feminist must
be pro-choice, or that any one who is not pro-choice is
anti-feminist. It is no good to say that in the past men
have abandoned children, so now women can be just as bad.
I think feminism should keep out of the discussion as it
is a moral question. If it was not for feminists, it would
be a lot easier to decide about abortion.
Question:
This is directed at all the speakers. My experience has
been that there is now much more concern about the needs
of disabled people and an increasing attempt to help disabled
people in society. Yet at the same time there is more ante-natal
screening and abortion for abnormality. So how can anyone
think that improvements in society's attitudes to the disabled
and abortion for abnormality are incompatible?
Ann Furedi:
I think that the first point that was raised relates to
point I was trying to explain about how a woman's attitude
to pregnancy may change. What happens it that when a woman
has an ante-natal test that detects a particular abnormality,
she is then in a situation whereby the reality of the child
that she will have is very different to what she imagined
it would be like. That may very well change her attitude
to the pregnancy. It may not, and there are some women for
whom it does not, but there are many women for whom it will.
The point that I am really making is that if a woman feels
strongly that she does not want to bear that child then
I think that that is a decision which comes down to her
and her alone, because she is the person who is carrying
the child. If there is a conflict of interests it is all
very well for a man to say, 'Well I will help you look after
this child', or for someone from Peter's organisation to
say that LIFE will provide you with resources, or for someone
to say that the woman should have the particular child adopted.
What these views do not take into account is that abortion
is actually about ending a pregnancy. The woman is not simply
saying she does not want to look after this child, she is
also saying I do not want to continue with the pregnancy
and that is a different matter. I think that at the end
of the day that is something that she has to be accountable
for and responsible for. I think it is very wrong for someone
to try to veto that decision.
In relation to the point that was raised about the awareness
of disability, I think there is a far greater awareness
of disability issues and I think that it is right and appropriate
that there should be much more concern about developing
resources that are needed to help people with particular
disabilities. What I find problematic is a carry over into
the attitude towards a pregnancy situation. I think it is
symptomatic of something that is going on much more broadly
which I think is the way that pregnancy issues are looked
at with more attention on the fetus, with the fetus right
the way back through pregnancy being seen as the equivalent
of a person. It is talked of as a kind of little person
in the womb, as if it has all of the sensibilities that
people actually do not develop until they are quite advanced
into childhood. You can see that discussion taking place
in relation to the question of fetal sentience and of fetal
experience of pain, where the fetus is discussed as being
like born people. This I think is happening in a particular
form in relation to the disability debate.
Agnes Fletcher:
I think it is true that largely as a result of disabled
people's own efforts and demands, and quite strident demands
at times, that things have shifted with regard to attitudes
to disability. Yet this building remains largely inaccessible
to disabled people: if I were deaf rather than physically
disabled I would have had no access to this debate and that
is still the reality for large numbers of disabled people
today. We are still waiting for discrimination to be properly
outlawed in the same way as it is for women and people from
racial minorities. So yes we have come a long way, but I
think it would be wrong to say that we had got there and
that there is no discrimination against disabled people
and that disabled people are not for the most part the poorest
in society with the least access to political process, to
debate, to policy making.
If you look at the various commissions which consider medical
ethics on genetics and other issues you will not find disabled
people directly representing other disabled people. So until
disabled people really have a strong voice in those debates
it is very difficult to feel that our views are being properly
considered and the particular perspective of disabled people
is being considered.
To respond very briefly to some of the points Ann was making.
I cannot be happy about the inequality in the law either.
I feel uncomfortable with the situation because of its inequality.
Ann might well want a society where terminations could be
acceptable for any reason including sex selection, potential
height of the person, if it is going to be a male and it
is under 5'2", because of particular skin colour that that
child is going to be. Actually I agree with her. Until there
is that kind of equality and that yes, it is truly the woman's
individual decision to decide to terminate on whatever grounds
she wants, I cannot feel very happy. I cannot feel, and
it may be very difficult for people here to understand,
but I cannot feel fully valued as a person, as a live person,
while that inequality exists in the abortion law. That may
be irrational but it is a feeling that is shared very strongly
by disabled people who do not consider the fetus as a person.
We see a negative attitude to abnormality, encouraged through
the idea that someone with Down's syndrome is not normal.
Disabled people are normal, disabled people are part of
the human race, we are not freaks, we are normal. We cannot
feel part of society while inequality is there, as it is
in abortion law.
Hilary Rose:
I am interested that the example that has been picked up
of Down's syndrome which is of course not a genetic disorder,
it is a congenital disorder. There is a world of a difference
between being part of a family where you know perfectly
well that people die a bit young, or they tend to behave
in a particular way, or there is Huntingdon's disease every
now and again, and a woman discovering she has a Down's
syndrome affected fetus. The discovery of abnormality is
a very different event for somebody who is part of a family
who carries a genetic disorder.
One of the things that is happening is the increasing expansion
of the numbers of genetic disorders: I think it is around
4000 that are classified now. That is actually worrying
because the problem is which of those genetic disorders
justifies abortion? I accept the common-sense point that
some are so terrible that you cannot imagine anyone wanting
to continue the pregnancy. In some of those families, for
example Jews with the problem of Tay Sachs, they have developed
community support for women who need to have an abortion
because the situation that would result for the woman and
child is so unbelievably dreadful. Even those women suffer.
There is a huge empirical research literature showing that
women suffer enormously from having terminated an affected
fetuses and that they are suffering up to a couple of years
later and feeling full of anxiety.
I think Ann has a slightly consumerist, unfeeling approach
to it. I think actually it is a much tougher decision than
those of us who have not actually been challenged by it
have to come to terms with. I do not think one should diminish
the difficulty of that. For example suppose one were 35,
the biological clock was ticking and they told you, you
have got a Down's syndrome fetus. I can think of quite a
lot of good reasons, thinking of the disabled people I know,
for keeping that pregnancy. It just depends who you know,
and one of the things about this culture is that we shut
disabled people away so you do not really know all sorts
of interesting people who just happen to look a little bit
strange. I think it is one of the things we cannot judge,
until we are in a culture where disabled people can get
into a building like this.
Ellie Lee:
We have run out of time, so can I ask our any of speakers
who want to say anything else for final comments.
Raanan Gillon:
I just want to get back to the two strands of the issue
here. I think it is quite important to keep them apart before
actually then making a decision that links them together.
The first one is: does the fetus have an independent moral
equivalence to us? I think what we heard from Peter is that
yes it does from conception onwards. Now if that is the
case I think it radically reduces the right of women to
do things to it, so that is a very important issue. If Peter
is right, abortion is not just an independent choice that
the individual can make.
The way to look at that is to say well suppose a mother
decides of her 3 year old, that she would like bump it off
because it is inconvenient, or because it is ruining her
life, or it is producing problems with the other children
in the family. No-one would suggest for a minute that she
should be able to do that, and go and kill that child under
some state accepted law.
So it seems to me that the fact that we do have an abortion
law, and of course there are radical difference in thought
on this, but in general we think that that is not the case
that fetuses are morally equivalent to us. If you do believe
that they are morally equivalent to us then I think you
have a very important duty to do what you are doing, like
Peter, which is to go on arguing with us and tell us why
we are wrong. That is why this debate will never disappear
because there are passionate beliefs in the two opposing
views, so debate should go on.
The second problem is that when you have conscientious disagreement
about these philosophical and theological issues then you
have got another moral question. This is about how to organise
society in a way that tries to recognise as much as possible
the conscientiously and thought out positions of these different
positions. I think it is quite different when it has been
thought out very carefully and where it is then reasonable.
They we have to try to acknowledge as much as we can the
different positions and not insist that one lot of people
have to do what the other lot of people believe is wrong
on either side.
The second point I wanted to make was the role of emotion.
Now we have talked about it, I have talked about it and
it is a very important fact of real life. People's emotions
are tremendously important in real life, but they are not
the last word about what ought to be the case and sometimes
one's emotions may be wrong. I think Hilary you were hinting
at that when you said your son told you the guilt that you
have is morally inappropriate. I think he was right, and
if we recognise this, we can start tutoring our emotions
and changing them.
The fact that we have strong emotions is a flag that says
watch out carefully here, but then we need to think about
them and it may be that our emotions are wrong. The example
I give is from medicine. Sticking a finger up somebody's
bottom to do a rectal examination is a repugnant, disgusting
idea, and most people think it is a revolting thing to do.
You learn in medicine that sometimes it is the right thing
to do and you have to then tutor your emotions to make them
match what you ought to do. I think a lot of that sort of
attitude is important to bear in mind with all the emotions
including the so-called moral emotions.
Peter Garrett:
I would agree that in a sense society is becoming more schizophrenic
with regard to the way we view people with special needs.
I think Ann is right as well that we do have an increasing
cult of 'fetal personality'. There are some brilliant feminist
books written complaining about the cult of fetal personality.
Those responsible for this cult are often not just pro-life
people like myself, but they are commercial companies like
Peugeot and Korean Airlines who will constantly show you
pictures of the baby in the womb and they wish to anthropomorphise
the baby.
They want to pretend, to take Ann's position for a moment,
that the baby is a person and they want to argue that the
Peugeot no matter how good and how much they want to sell
it to you, would only be the second most comfortable place
you have ever been. Now I think that increases the rapidity
with which schizophrenia is arising because we are going
to now enter the 21st century. 'Window on the womb' technology
and fetoscopy is going to treat us to manifold insights
into the symphonic process by which the baby develops in
the womb. At the same time we are seeing our society in
some sections arguing for almost unlimited reproductive
autonomy.
I would really like to throw a question back to Ann that
relates to the question that was asked about feminism and
the current of feminism running or bifurcating from the
pro-life, pro-abortion debate. The question I would like
to put to Ann is just how far would you go? I am surprised
that Agnes seemed to be lining up with you on this but if
a woman says to you I am having a baby girl, and I have
decided I just do not want a baby girl, what would you say?
Is it not the logic of your position and perhaps also the
logic of Agnes' position to try to remove the stigma that
currently attaches itself to people in the groups that you
are representing? Yet is not the logic that you must automatically
say yes, abortion because it is a baby girl is acceptable?
Ann Furedi:
Yes, that is very much the logic of what I am arguing, and
I do not think there is any conflict between that position,
and women's rights. The principle through which I would
look at the issue of abortion is in terms of allowing a
woman to maintain her bodily autonomy and to make a reproductive
decision for herself, because she is the person who is primarily
affected by it.
I think in some ways that the absurdity is that society
places on women almost an obligation, in restricting abortion,
for a woman to treat a fetus in some ways in a more privileged
way than the way she is expected to treat a child once it
is born. To give you an example of what I am talking about,
I have a 2 year old. If my 2 year old was dying from a complaint
and I could save him by giving a bone marrow transplant
or a kidney transplant, I would regard myself as being morally
heinous if I did not accede to that. Yet there is actually
no law which could compel me to take something from my own
body to save the life of my born, living, emergingly conscious
child. Ironically there is a law that would compel me, after
24 weeks pregnancy, to endure the hardships and the health
risks of late pregnancy and labour, to bring that child
into existence. I think that is a rather bizarre way to
frame the law, as it compels women to have a relationship
to the fetus which is actually a legally privileged one
over the way in which it forces a woman to relate to born
people. It is my resistance to the idea of forcing women
to relate to a pregnancy in that way which would make me
say that a woman should have the absolute right to make
decisions about the nature of that pregnancy.
Agnes Fletcher:
I understand from that what Ann would be advocating is termination
on any grounds up to point of birth, is that correct?
Ann Furedi:
It is and I do not have any particular problem with saying
this. Although I know that very often people get upset about
it and it tends to get caricatured as abortion on the way
to the delivery room. Get real! We are talking about real
women here. When you think about what the process of an
abortion involves, do we think a woman undertakes a late
abortion without searching her conscience and without really
thinking through the implications of what she is doing?
We do not actually need laws to tell women when they can
and when they cannot have abortion late in pregnancy as
a way of regulating it. The reason why women do not in general
have abortions late in pregnancy is not because there is
a law telling them that they cannot, but because they do
not want to have an abortion late in pregnancy. This is
because it is a deeply unpleasant, deeply distressing procedure
and because women's attitudes to pregnancy change.
When you look at abortions for fetal abnormality that are
post 24 week pregnancies and you look at the gestation at
which some of these pregnancies are ended, it tears your
heart out. In 1996 there were two pregnancies that were
terminated at 37 weeks, that is three weeks before the child
is due. My baby was born at 38 weeks and it was not even
regarded as being premature. In 1995 an abortion took place
at 38 weeks. Now you can either decide that those women
who had those abortions are the most morally reprehensible
women in the world or alternatively you can say what was
it that put those women in that situation where they felt
compelled to make that decision? I think we need to understand
the reasons why those women choose that path, and then we
will see the immorality of restricting their right to do
so.
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