What an interesting paradox. A few thoughts......There are a few levels
in looking at this question, while recognising different cultural contexts.
1. prevention and inclusion operate as contradictory forces because of
the ways in which prevention is often conceptualised and practiced. In
affluent Western countries it is often conceptualised as a matter of
exercising choice and autonomy (eg, abortion, genetic counseling) of the
mother or parents. Inclusion however is done in the best interest of the
person with disability and, while not disregarding the importance of a
measure of choice and autonomy in human lives (and in inclusion), operates
best, largely on notions of relationships, interconnectedness and
interdependence. So the contradiction here is in terms of whose best
interest is being served and what value frameworks apply. In some cultures
(eg China) 'prevention' measures such as abortion may be carried out more
as a by-product of a wider population control measure and from a
state-held view of the validity of eugenics. Most cultures would experience
a financial cost as a result of (rising) disability levels in their
populations, also providing motivations towards 'prevention'. Here
'prevention' is held to be in the best interest of the State. I'd say
that prevention is lesss often done because the preventors think that
this would be a good thing for the people concerned and in their primary
interest.
Of course congenital disabilities are not the only disabilities around and
all kinds of disabilities happen because of accidents, environmental
causes, wars, poverty, lack of proper education (causing poverty and its
consequences), unintended consequences of medications and surgery, etc. It
is clear that, given human nature and human imperfection that disability
will always be with us and can only be minimised and not completely
prevented.
2. Genuine prevention is about removing the causes of disability rather
than removing people with disabilities. If the motivation for prevention
were tied to a view of human life which held its purpose to be the maximum
development of human potential (i.e. physical, spiritual, psychological,
intellectual) then such prevention and inclusion would be compatible
concepts, showing them to be not exclusively disability issues at all but
issues affecting everyone. This is because the work of removing the
causes of disability would have us attempt to eradicate war, poverty , lack
of education etc. while being more rigorous about achieving a healthy
environnment, safe work practices, safe medecine etc. Again, the advent
of disability could only be minimised, not eradicated, even if all of these
objectives could be successfully progressed, which in view of human
history is a little doubtful. 'Prevention' which does not consider
these causes is window dressing at best and leads to removal of the
person rather than the cause, making the vulnerable more vulnerable.
So the two concepts of prevention and inclusion are contradictory
depending on whose interests they serve and on what value frameworks are
adopted. They are complementary within an inclusion paradigm which holds
to notions of diversity, equal intrinsic value of human individuals and a
life of purpose and meaning through the development of human potential.
Prevention in this sense is about a better life for all of us, easily
linked to inclusion. None of this is saying that prevention is about
getting rid of people with disabilities. Rather, it encourages the valuing
of the presence of people with disabilities through valuing a diversity
in our society and the meeting of challenges in individual lives through
which human potential can grow.
So whereas they don't need to be, in the world as we have it, prevention
and inclusion are contradictory.
3. This brings us to the 'how' question, ie how do we get the dual message
of prevention and inclusion across? (that is if it would not be better to
have separate programs for prevention and exclusion because of the
conflict of innterest in the 'real' world). First it will be necessary
for those who attempt to deliver this dual message to be clear about the
various interests that are served by different approaches to prevention and
what that says about the underlying beliefs and assumptions of these
interests. Often they will find that they will have to adopt a clear
value framework themselves which is not compatible with most of these
interests. Next they will have to make it clear that to deal with
prevention is largely a task of dealing with widespread injustices, neglect
and mistakes that are located in our wider society, rather than being
disability-specific. This makes it political and advocacy work (rather
than merely delivering a message)which will most likely never be finished
but makes a contribution to minimise the causes and thereby prevent
disability and promote inclusion, thereby making it a very valuable
activity indeed. This then is one of the important contributions of people
with disabilities to a better life for all of us.
The nature of advocacy required to undertake this perpetual task would
require clarity of purpose, vigour, minimised conflict of interest, clarity
of whose interests it serves and an awarenes of the costs such advocacy
would attract (and strategies to deal with this).
Erik Leipoldt
B.Soc.Sci. Human Services (Hons.)
PhD candidate (topic: euthanasia and disability issues)
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