1997 - co-written with Marie Claire Darke
Published in Swimming Against the Tide: Feminist Dissent on the Issue of Abortion
pp. 67 - 74, edited by Angela Kennedy, Open Air Books, Dublin
Abortion and Disability: Is It That Different?
'That's different?' is what most women and feminists
would say when questioned about the elimination of one particular social group,
the disabled, through abortion and infanticide. The abortion of female offspring in many Asian countries
because they are seen as undesirable, it is argued, is a different matter as
well; the mass infanticide of female babies in China because they are expensive
to marry off, that's different also.
But is it that different?
Of course not, it is just a convenient phrase to ignore the genocide of
a group of people that we don't want in our society. Others may behave in dubious way, but we don't!
The reasoning many people in other cultures give for
killing female offspring is the same as those used here to not have a disabled
child: cost, stigma, burden, their marriage potential, etc. etc. The excuses are the same; excuses that
are all equally invalid for the elimination of a female child as they are for
the elimination of a disabled child.
Such similarities in reasoning can be explained and understood if we
assume that Aristotle's notion of there being a hierarchy of physical
perfection, with the male human form being at the summit, is the basis of most
western beliefs on the value and position of women. Consequently, therefore, the female represents the first
step along the road to deformity (Garland, 1992); making the elimination of
women as eugenically pleasing as the disposal of disabled people in a
patriarchal society (ours, in other words).
Let me make various points clear before I elaborate
any further on this, the abortion and infanticide of disabled foetus's is seen
legally, and therefore medically, socially and politically, as something quite
distinct to that of the 'ordinary' foetus and baby. No other foetus or baby has the struggle to survive that the
disabled baby does; not because of its disability but because of the social,
state and medical structures put in place to weed it out. 'Weed' being an appropriate metaphor
for how the disabled individual is seen and the attitude of the medical
profession in its treatment of a disabled person: kill it.
Under various statues - the 1929 Infant Life
preservation Act, the 1967 Abortion Act and the 1990 Human Fertilisation and
Embryology Act, primarily - there is no time limit in which an abortion must be
carried out and suspected disability is reason enough for carrying out an
abortion (see Bailey, 1996, for a fuller examination of these points). Combined with this infanticide, through
non-treatment of disabled babies, is routine and based solely on subjectively
dubious notions of 'Quality of Life'.
Such actions, attitudes and policies, would be totally unacceptable if
applied to any other social group: if the child was treated in such a way
solely on the grounds that they were, for example, black, or Asian, or female,
or red hair'd or brown eyed, or Jewish, or Catholic, serious questions about
our perceptions of our society and ourselves would be asked. Not if it has Spina Bifida, not if it
has Downs Syndrome or Cerebral Palsy!
Mary Douglas argued that disabled people make us
uneasy as they threaten our sense of mastery over nature (1966); fact which
partly explains the medical professions obsession with eradicating the disabled
as a group, though not the average woman's equal desire and participation in
that eradication. That is much
more complex; the pressure we, as women, are put under to collude in the
medico-cleansing of society is both explicit and easily inferred in a variety
of complex social relations.
When I had my son I had expected to be put under
considerable pressure to test (and abort) for foetal abnormality; my husband
has severe Spina Bifida and Hydrocephalus, he is obviously congenitally
deformed to anyone who meets him.
I was not prepared for the assumptions and pressures that I would be put
under, and not only from the medical profession but our families and friends
also. My refusal to have any tests
often resulted in a brow-beating from medical staff, indignation from relatives
and abuse and bafflement from others.
I wanted to say to our 'friends', so many times, 'I thought you liked
Paul?'. It seemed, and is, so
illogical that someone could be a friend and yet presume we would find it
abhorrent to bring another being in to existence who might be like my husband;
on contrary, it was, for me, quite a nice idea; after all, I love my husband
for who and what he is, not despite him being what he is. To divorce the body from the character
is not only reductive but a fallacy that is farcical.
I was not aware of the degree to which people are able
to divorce a contradictory reality from their own generalised fantasies: i.e.
the 'disabled' as a generalised Other whilst seeing my husband as something quite
distinct from them, the disabled, in general. It is hard to convince people that their opinions about the
generalised Other, the disabled in general, have a very real affect on the
everyday lives, not least their confidence, of individual disabled people.
The indirect social pressure that is put upon women to
have tests for foetal abnormality - which carry with them an implicit
acceptance that the 'wrong' result will result in an abortion - is all around
us. The cut backs in social
services tell us that if we have an impaired child so responsibility will rest
with us as parents; media images tell us that the disabled life is a sad one
and that the disabled are 'rightly' segregated (Darke, 1996); the news tells us
how tragic it is to be disabled in its nightly stories of the search for a cure
for disabilities (that has never happened); and our parent's tell us nightmare
tales of families who did have a 'crippled child' in the past. The nightmare is portrayed all around
us and we accept its truth unthinkingly, and unaware-aware of its false content
or the social reasons for its elements of truth. Our very ignorance of the reality of disability and its
social construction encourage us in participating in the destruction of a
social group as vital, real and valid, as ourselves. The actual existence of a test to discover an abnormality
implies, very strongly, that such impairments or eventualities are to be
avoided at all cost; if the state has seen fit to invest so much money, time
and effort to not only creating the test but offering mass screening, then the
actual impairment must be pretty bloody awful, irrespective of what the
professional says to the expectant mother. Such hidden state coercion is immense and very real but,
none the less, socially constructed.
As Troy Duster (1990) has written:
Genetic counsellors are probably, as professionals,
indeed neutral, if this means that they do as much as possible not to
communicate their personal prejudices and opinions about whether a couple
should take a chance or not or whether they would recommend living with a
disability or not, etc. However,
the individual neutrality of the counsellor is not the issue. It is, in fact, the machinery of a
screen that has been erected. Even
if one is neutral about whether or not one uses the advice or technology, etc.,
the simple fact that the screen is in place communicates a powerful message
that something is wrong with the disorder for which the screen is in place.
Duster then continues, even more ominously, that:
Once a test is available and a woman decides not to
use it, if her baby is born with a disability that could have been
diagnosed. It is no longer an act
of fate but has become her own fault.
(p.227)
Consequently, I would argue, that the passive
acceptance of the routine abortion of impaired or abnormal foetus's not only
inhibits real freedom of choice but ensures that choice is systematically
withdrawn from women making a decision about having a baby with an
impairment. By extension, it also
continues, supports and further perpetrates the processes of disablement that
any impaired individual, and their mother, will face in the near and distant
future.
The call of nature, the call to nature is often made
to justify our genocidal attitudes to disability - what else can the 80%
abortion rate of people with Spina Bifida be called - just as it was in the
subjugation of women for thousands of years. And, as with women, just because we were told it for
thousands of years did not make it any less wrong; and, as with women, just
because many of us lived our lives as parodies of the male ideal of women, it
still did not make it right. We,
women, fought a battle for equality on the grounds that biology is not destiny
and now we apply that determinist tag to another group who only seek equality:
nothing more and nothing less.
Just as we ]were accused of wanting special treatment and favours, we
now accuse the disabled of wanting special favours and treatment.
One of the main criticisms of disabled people against
the routine acceptance of the abortion of an impaired foetus is, as I stated
above, is that the basis on which it is carried out - the presumed low 'quality
of life' thesis - is wrong. There
are two points to be made here; firstly, that often the information given to a
potential parent of an impaired child is drawn from a nightmare scenario that
will rarely actually come in to being.
A strong enough point in itself but one which can be used against
disabled people; what if the infant may actually fulfil the definition of a low
'quality of life' by most people's standards: does this then make it an OK
thing to do? I would argue here
that it would still not be a reasonable thing to do because it is still based upon
a subjective view (even if it is 'most' peoples view). The point is that if we wish to value
difference we must value all difference and not just that which might closely
resemble our own standards of life and living.
The key reason for rejecting any 'quality of life'
arguments is that it is rooted in a medicalised pathological view of what it is
to be alive; impaired or not. It
ignores the social factors of existence, factors which are intrinsically more
important that the pathology of the individual because we may live life within
an individual body but we experience society and culture through its social
constructions which are liable and capable of dramatic change. In a society where steps, ignorance and
fear abound being in a wheelchair is hard; all those things are constructs
through which we live our lives.
They can change or be eradicated; therefore such a society could exist
that meant being in a wheelchair was non-problematic.
To constantly place the burden of impairment on the
individual is not only a social lie, but a misrepresentation of how we all live
our lives: it is mediated, constructed and ultimately defined by the social
structures (constructions) which define our thoughts feelings and actions. We must move away from seeing
everything as the problem of the individual (the medical model of disability)
and start to see it as it really is, a social construct we have created for one
reason or another. If you have
ever pushed a wheelchair you soon realise the problems that a wheelchair user
faces; not because they are in a wheelchair but because of actual physical
man-made construction which inhibit a wheelchair users full participation in
society and its many cultural manifestations.
The medical model of women has been used against us
for centuries (biology as destiny) but we have resisted it to show that being a
woman does not mean a single thing but a rich variety of experiences that are
as influenced as much by culture as anything else. No feminist would argue, I hope, that it is the same to be a
black woman as it is to a white one, or that to be a working class woman is the
same as being a middle-class one is.
There are some shared experienced (denigration by society for a physical
reality: sex), as there are for disabled people (denigration by normal people)
but just like women, their experiences, perspectives and lives are as rich,
varied and as sad as ours. Yes,
sad. Many people lead sad lives;
so what. It is not due to a
pathological state but a social constraint or imprisonment usually. But it is as equally valid to be sad
and pathetic as it is to be admired and successful as, more often than not, it
has nothing to do with your body but the circumstances in which you live.
The 'quality of life' test my husband always finds
somewhat amusing because if applied to him and then the rest of society, most
of the rest of society has to be put down immediately. Social circumstances have dictated this
not any intrinsic ability: he has a car, a house, a PhD, a son, regular holidays,
is respected by his friends and community - even if they would kill any one who
might be born like him - he has money to do what ever he pleases, he is on
national and regional committees and selection panel and, most importantly, he
has me. Most things which the
majority of the population would spend their lives trying to achieve and still
fail to get. Why? Good fortune, affluent relatives, luck
and an ability to appease white middle class culture by parodying it. Yet, if born today, he would have been
aborted or left to die by a doctor who would have told his parents that they
entered their nightmare scenario.
It is a mistake to assume that I am arguing that
disabled people should not be routinely killed because my husband ended up not
being a nightmare scenario; circumstances and individuals in his life might
have been different - I might have listened to all those people who were
telling me I was making the worst mistake of my life (that was listening to
them in the first place).
That is my point really: the line between being one of 'them' or one of
'us' is a fine one, not only for them, but for us also. Accidents of birth define our lives:
being born disabled in a middle class family is often more beneficial than
being born able-bodied and working class (i.e. poor). Money is often a bigger determinant of disability that your
actual impairment ever is.
This all begs the question of what purpose does the
extermination of one particular group serve. I would argue that it is two fold; one is a financial and
the other more social (but not psychological). The cost-benefit analysis work that has been undertaken and
used by most western governments has proved that disabled people can cost
society more than the ordinary 'Jo/e'.
This can be looked at in two ways: one, it may be the case occasionally,
but is rarely so, especially if society was constructed more equally to enable
disabled people to participate on an equal footing. But, secondly, it would be a mistake to argue this point too
much because some people with impairments will always cost more (rightly so)
for the state to manage and provide for.
So what. If you base your
view of life on cash cost you will get the society you deserve; as activists we
should make those who define life like this make it explicit rather than let
them hide behind the falsehoods of dubious claims to nature and 'quality of
life' scales.
Another point to be made about the excessive cost of
disability, which is often a very real extra cost, should not be ignored as
that then enables the 'ordinary Jo/e' to think that he costs the state and
society nothing. We all cost money
and massive government expenditure is spent on us - able-bodied white middle
class people such as myself - everyday and for the preservation of our 'quality
of life' at the expense of others.
The massive subsidisation of private health care (through state funded
research, tax concessions, the use of NHS equipment, premises and training) is
a prime example. Private
health care is not available to sick and disabled people as it is too expensive
yet we, as a small minority of its funder's, reap all the benefits. Private education is largely state-funded
yet those who benefit from it pay very little for it. The laws of natural selection are as often applied to the
few who benefit as the many who are slain by it; but as the great E.P. Thompson
argued, the claim to be natural laws are the greatest evasion of truth used by
the middle-classes to hide, ignore and exploit social inequality for their own
purposes (Mazumdar, 1992). That is
why the eugenics movement has, and always will be, class and male
dominated. The apparent 'common
sense' of such claims to natural laws are so attractive because they seem to
absolve those who participate in their conclusions from any blame, but as we
all know, 'common sense' is as equally socially constructed as the M25; like
the M25, it did not just come in to existence, it was built over a very long
period of time, until it seemed like it had always been there (cf. the work of Gramsci).
Feminists have often argued that it is the women's
right to choose and, as a feminist who am I to argue against that. That is not at stake here as often
those who are making a decision about whether or not to abort an apparently
impaired foetus desperately want a child, or are in the process of building
what see as their family; and by the way, many a wanted 'normal' infant is
exterminated in the obsessive zeal to eradicate the abnormal ones. We must not forget that the issue of
whether or not to abort a disabled child is much more complex than merely 'the
right to choose'. Most abortions
of impaired foetus are only ever an issue for women who want a baby because
they are not usually discovered until later in a pregnancy, at a time when
those who choose an abortion have long had one.
It would also be wrong to assume that I am being
critical of women who have abortions of impaired children, I am not
directly. Considering the pressure
that these women face, politically, socially and through the media, along with
the desperately tragic (false) image that is given of life with an
impairment it is quite
understandable. It is wrong of any
individual, disabled or not, to criticise any individual woman who has an
abortion on the basis of suspected or real impairment to the foetus; to do so
would be to indulge in the individualising of what is a social pressure
reinforced by its culture and politics.
To individualise the problem disabled people face in society's
determination to be rid of them is to do to others that which society is doing
to them: individualise and de-politicise a social and political issue.
Abortion is, like disability, a social construct; a
set of ideological beliefs and structures that are not simply 'there' but a
complex system of socio-cultural and political options utilised among and above
other equally ideological options.
One of the aims of this book is to flesh out the seemingly 'natural'
claims that many of the old feminist rallying calls called upon; putting them
in to a wider context and enabling us all to make more informed judgements upon
the basis of a wider realisation of the nuances of the female experience and
not just based upon the white-middle class calls to a narrow band of liberal
bourgeois education or information.
So what is the ultimate function, I am if nothing else
a terrible functionalist, of aborting a disability? I would argue that it defines normality for a consumer
culture dependent upon perpetuating the myth that it actually exists. As the great Georges Canguilhem wrote:
'strictly speaking a norm does not exist; it plays its role which is to devalue
existence by allowing its correction' (1989, p.77). He continues, much further on, with his usual astute
grasping of the realities of the relationship between the normal and the
abnormal, stating that: 'it is not paradoxical to say that the abnormal, while
logically second, is existentially first' (ibid, p. 243). What Canguilhem is saying, later
elaborated on by Michel Foucault, is that rather than abnormality actually
being a deviation from a norm, it actually defines the norm where none existed
before.
Bailey (1996) almost makes this point, without fully
realising the complexity - or is it the simplicity - of the process, when she
writes that it 'does seem that the institutional practice of prenatal testing
systematically separates the normal from the 'abnormal', and brings in to play
a whole set of different judgements about the future for the latter as compared
with the former' (p. 152). Those
different set of judgements can only actually exist if you separate two groups
of people from day one; the abnormal is first, it defines the limits and
parameters of normality for that moment and the future.
As we live in a consumerist culture where the only
true value of humanity is based upon the number of commodities we have; the
more 'normal' we are the more commodities, we are told, we can obtain. In fact, we have to buy many
commodities just to maintain our illusions of normality, even if that is at the
expense of the natural: i.e. deodorant.
This is especially true for women: the pressure to control our bodies
and weight is the best example of this process. Failure to control and maintain our normality is seen as not
only a social wrong but a sign of moral turpitude. And as that is for the male gaze, the extermination of the
abnormal is for their dubious moral gaze.
Yet again we are complicit in the denigration of difference for a
patriarchal structure.
Under the Nazi's a quarter of a million disabled
people were exterminated under their racial hygiene laws (Gallagher, 1990);
modern western countries in total carry out an equal number of exterminations
per year for the same reasons: economics, supposed burden to the state,
spurious 'quality of life' arguments and on a false notion of normality as
superior to abnormality. Modern
technological advances used in the detection of abnormality are the full
flowering of a fascist ideology against our own bodies. Should we be a complicit in that body
fascist hegemony?
Abortion of any kind is never a simplistic issue or
decision and the issue of the abortion of impaired foetus's is even more
complex but, sadly, it is often too simple a decision. Disability, the resulting social
exclusion of an individual based upon their physical limitation (one's
impairment), is not as simple an issue as it is portrayed; it is a social and
political issue, much like abortion, and it is not about individuals or their
experience of their impairment (as Morris (1996) and others would argue).
For an excellent elaboration of the difference between
impairment and disability see Michael Oliver's two books (1990 & 1996);
That is not to say that the experience of impairment does not have its place,
but it is a different issue to disability politics and something which enables
those who wish to denigrate disabled people much greater chance to do so as it
reintroduces the scope for an individualising attitude towards disabled people
as a marginalised socio-political
group (male and female). It
is an intellectual weakness that presumes that the feminist dimension cannot be
incorporated in to the overall disability politics argument without resorting
to 'impairment' orientated examples or philosophies which re-individualises
impairment as disability. Just as
it is atavistic to blame individual women who have abortions of impaired
foetus's it is reactionary, and ultimately self defeating, to argue for the
reintroduction of impairment in to disability politics.
In conclusion, I would argue that many feminists
accept the social propaganda used against disabled people without question, and
I hope that this short chapter goes some way in making other feminists think
about it a little more seriously.
Feminism is, by its very nature, about the validation of difference and
Otherness - the female as 'the first step on the road along abnormality' - all
I am doing is arguing that we go down that road a little further and pick up a
few more allies and friends; if for no other reason than the fact that half of
the disabled community are our sisters.
4137 Words approx.
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