thought people would be interested to read this.

----- Original Message -----
From: "Catherine Turner" <[log in to unmask]>
To: "Karen Easterbrook" <[log in to unmask]>; "Yusuf Osman"
<[log in to unmask]>; "Husna Begum" <[log in to unmask]>;
"Sayka Hussain" <[log in to unmask]>; "Phil Miller" <[log in to unmask]>;
"Natalie Meadows" <[log in to unmask]>; "Jamie Tinklepaugh"
<[log in to unmask]>; "Michael Bater" <[log in to unmask]>
Sent: Thursday, May 01, 2003 7:03 PM
Subject: FW: [danmail] The British Council of Disabled People - The New
Genetics and Disabled People.h


> I thought people would find this interesting reading.
>
> Catherine
> -----Original Message-----
> From: Mike Higgins [mailto:[log in to unmask]]
> Sent: 27 April 2003 14:47
> To: [log in to unmask]
> Subject: [danmail] The British Council of Disabled People - The New
> Genetics and Disabled People.h
>
>
> The British Council of Disabled People - The New Genetics and Disabled
> People
>       About Projects Information Campaigns
>      Activate Membership Reports Store
>      Staff Vacancies Forums Donate
>
>
> The International Sub-Committee of BCODP
> The New Genetics and Disabled People
> The following document was originally produced for consultation and
> discussion and was approved by BCODP's National Council in February 2000.
>
> Introduction
> The issues around clinical genetics and genetic research have given rise
to
> an ethical and moral minefield. However, disabled people can offer an
unique
> perspective which will help everyone chart a way through some dangerous
> areas of this minefield and out the other side.
>
> As disabled people we know that our lives have a value equal to anyone's.
We
> know that although our impairments may cause us pain or discomfort, what
> really disables us as members of society is a socio-cultural system which
> does not recognise our right to genuinely equal treatment.
>
> Facing discrimination is part of our daily lives. We are routinely denied
> access to transport, mainstream education, employment, information and
> services. We are routinely patronised, segregated and pushed to the
margins
> of society. This kind of discrimination has led to poverty for the
majority
> of disabled people. We have in this way become the subjects of charity,
the
> objects of other people's pity, and have to fight continually to be
> recognised as the legitimate subjects of our own lives.
>
> One key reason for this is that society continues to see disability as
> essentially a medical problem. This is where the new genetics enters stage
> Right or stage Left, brashly proclaiming its promise of a medical solution
> for disability. This is very much in line with trends in medicine
generally
> which have narrowed the focus onto the pathology of disease and away form
> considerations of the broader social experience of illness. Prenatal
genetic
> testing can be seen as the logical extension of this process - the simple
> equation of disability with genetic "abnormality." reference 1
>
> The first thing to recognise, however, is that over 80% of disabled people
> are not born with their impairment but acquire it. Of those who have an
> impairment at birth, many of these are not genetically determined.
> Therefore, even if the threatening promise or the promised threat of a
final
> genetic solution was delivered, disabled people would still be around. As
> DAN would say, "Get used to it!"
>
> So what are the issues for disabled people posed by recent developments in
> genetics (screening, testing, gene therapy, cloning, etc.)? Are we on the
> verge or in the middle of a new, more subtle eugenic offensive which
> publicly speaks the liberating language of improved health while privately
> maintaining the more sinister ideal of "improving the human race?"
reference
> 2
>
> Does prenatal, or even post-natal, genetic testing or screening foster
> intolerance against disabled people? If we oppose it will this foster even
> greater intolerance? Will we be accused of special pleading? ("They would
> say that, poor things.") Or should we perhaps adopt suggestions that
testing
> should be available only for conditions which result in death in childhood
> and/or lives characterised by pain and suffering? reference 3 Of course,
> this begs the questions of who decides what level of pain and suffering is
> too high or what is the value of a child (only to become an adult?). There
> is also the question of how we would go about getting this kind of policy
> change in a field being driven by a public fear of impairment, the
rationing
> of health care as well as considerations of profit and market share for
> those developing the genetic tests. reference 4
>
> Within the disabled peoples' movement we need to recognise that the moral,
> ethical and political tangles all this raises are frighteningly complex.
> reference 5 We need also to understand that because of this there are
likely
> to be differing and strongly held views among disabled people and these
need
> to be given respect and space within the debate. Therefore, while not
> everyone will agree with the arguments made in this paper, it is hoped
that
> it will serve as a focus for a constructive dialogue on the road to
arriving
> at an effective and workable consensus on the new genetics for the
disabled
> peoples' movement.
>
> Eugenics
> The now widely discredited "science" of Eugenics was founded by Francis
> Galton, who first used the word in 1883. It comes from the Greek root
> meaning "good in birth" and to quote Daniel Kevles, "He intended it to
> denote the "science" of improving human stock by giving 'more suitable
races
> or strains of blood a better chance of prevailing speedily over the less
> suitable." reference 6 Eugenics grew out of Darwin's ideas on evolution
> (Galton was Darwin's cousin) and also partook strongly of the positivist
> philosophy of the time, which argued, very roughly, that science had the
> answers for all society's ills. Eugenics was a way that people could
> scientifically assist a more desirable evolution of their own species.
> "Desirable" being understood, for example, as similar to middle-class
> intellectuals, say like Francis Galton.
>
> Clearly, eugenics, then and in all its subsequent guises, has always been
a
> socio-political and cultural ideology which has tried to clothe itself in
> supposed scientific objectivity. Although science itself is invariably
> informed by wider social concerns, it should be obvious that which type of
> people and what traits in people are desirable poses blatantly
ideological,
> not scientific questions.
>
> Sterilisation of "undesirables", a policy which gained widespread support
> from the late 19th century, was based directly on eugenic ideas about
racial
> (human race) improvement. It was widely practised, particularly in the US,
> where it became the model upon which in the 1930s the Nazis were to
develop
> their programme for sterilising, which from 1939 developed into the
> systematic killing of disabled people. In the name of "mercy killing",
> 100,000 disabled people had been murdered by 1941. This paved the way for
> Final Solution to the "problem of inferior races" - the mass murder of 12
> million Jews, Gypsies, lesbians, gay men and others - which finally
exposed
> the fatal logic of eugenics. Nonetheless, forced sterilisation of people
in
> mental institutions continued into the 1970s in the US and elsewhere, and
> eugenically-inspired laws relating to marriage and sterilisation continue
to
> exist in many American states. reference 7
>
> A Modern Eugenics?
> Despite its unsavoury heritage, the eugenics ideal survives. It has
changed
> its costume, but the song is still the same. Class or race, at least for
all
> but the most extreme, is no longer at issue. The biological quality of
human
> populations has now become the target, as advances in genetic engineering
> seem to hold out the prospect of moving us all closer to Galton's ideal of
> being "good in birth."
>
> But genetics is not in the least eugenic, say proponents of the new
> genetics. For example, Hughes writes, reference 8 "While the biological
> factors in most forms of inequality are probably slight, genetic
technology
> does promise to create a more equal society in a very basic way: by
> eliminating congenital sources of illness and disability that create the
> most intractable forms of inequality in society. We can go to great
lengths
> to give the ill and disabled full access to society, but their
disabilities
> place basic limits on how equal their social participation and power can
> be." Isn't it desirable, he asks, to rid humanity of disease and
> impairments? Do we want our children born with muscular dystrophy or
cystic
> fibrosis? If these and other conditions can be prevented with the help of
> clinical genetic intervention what could possibly be the problem?
>
> There are, of course, a host of ethical issues to consider, but the
central
> fact is that there are still no cures and gene therapy remains a distant
> prospect. reference 9 Another key problem that has to be addressed is the
> way in which a genetic "abnormality" relates to a disease. reference 10
> Except in a few instances, there is never a clear one-to-one relationship
> and environmental factors always have to be considered. reference 11
>
> Although most geneticists would maintain that eugenic excesses were an
> aberration and not really connected to the science of genetics, David King
> argues that not only are the histories of genetics and eugenics
inseparable,
> but that there are also powerful eugenic assumptions underpinning current
> genetic research and clinical practice. reference 12 He quotes a 1994-5
> study of 37 countries by Dorothy Wertz and John Fletcher which found that
> outside Northern Europe the vast majority of genetic counsellors hold
> overtly eugenic views and directed their patients accordingly. This seems
to
> confirm McGee's observation reference 13 that as early eugenicists spoke
of
> improving the gene "pool", at the present time, "Genetic tests are
allowing
> clinicians to play the role of lifeguards." It is also quite clear who
they
> are encouraging to drown.
>
> King further maintains that the danger of a eugenic resurgence, at least
in
> the West, will not come through state coercion but will be more subtly
> wrapped in the lassez faire cloak of consumer choice. reference 14 "The
> danger we will need to guard against," writes King, "is the development of
a
> kind of eugenic common sense, that it is irresponsible to refuse to
undergo
> tests, and that every child has the 'right' to a healthy genetic
endowment.
> ... We will need to be vigilant for eugenics disguised as public health
> measures."
>
> Abortion = Eugenics?
> The major problem caused by the new genetics is that despite the popular
> conception that genetic treatment is providing cures, there are virtually
no
> new therapies for the vast majority of genetically-identified conditions.
> reference 15 Because of this, at the moment, prenatal genetic testing or
> screening leads not to the elimination of an impairment but can and often
> does lead (through abortion) to the elimination of a foetus. reference 16
>
> Does this kind of selective abortion amount to an attempt to get rid of
> disabled people? Is it a form of eugenics? If we take this position are we
> then saying that an embryo or foetus is a potential person with all the
> rights to protection that this entails? If we are, does this put us in the
> Right to Life camp and at odds with the idea that a woman should have a
> right to choose with respect to her pregnancy?
>
> This is how the argument over testing and abortion is generally framed,
but
> to engage with it on these terms is to accept the basic premise that women
> actually have free choice. As we know, choice is heavily circumscribed by
> cultural, social and economic pressures and these are powerfully against a
> woman choosing to continue with a pregnancy after "an abnormality" has
been
> detected. reference 17 The British abortion laws enshrine this prejudice
by
> not allowing termination after 24 weeks unless a likely problem has been
> discovered.
>
> We also need to remember that it was in the 1970s that legalised abortion
> and the development of amniocentesis came together to stimulate an
increase
> in the detection of prenatal genetic conditions. It was pointed out at the
> time that a society which allows abortion on demand is not likely to
> question the abortion of a foetus with a genetic difference. This has
proved
> to be the case, with growing public support, at least for genetic
screening.
> reference 18 The social acceptance for aborting "problemed" foetuses is
deep
> rooted and provides a tough challenge for the disabled peoples' movement.
>
> Brave New World?
> Besides the question of prenatal testing and abortion, there is also the
> broader question of the possibility of "making" instead of "having"
> children; realising a genetic/eugenic ideal - the perfect person - through
> screening and/or more invasive genetic engineering. Hughes has even looked
> forward to parents being able to choose their children's characteristics
> from a gene catalogue. reference 19 However, assuming state direction
> (either through compulsion or incentives), not only would some form of
> increased genetic homogeneity be problematic, but as the old adage has it,
> you can't make angels until you know the specifications of heaven. It is
> within these god-like realms that the Human Genome Project's promise of
> unlocking the key to human life by complete genetic mapping invites an
> eugenic interpretation. reference 20 After all, how else are we to
decipher
> the idea of an assumed genetic norm except as one which unifies the
outlines
> of heaven and the image of its angels?
>
> Further to the above point, Jonathan Beckwith, a professor of microbiology
> and genetics writing in 1974 about genetic screening laws in the US (which
> he argued represented the beginnings of a new eugenics program) warned:
>
>   a.. "Who will exercise control?
>   b.. Who will make the decisions about which genes are defective, and
which
> behaviour abnormal?
>   c.. Who will make the decisions about the genetic worth of prospective
> human beings?" reference 21
> While we may object to such decisions being made at all, it has been
> happening in health services informally for years. Furthermore, as Glenn
> McGee has observed, reference 22 in the near future, "Virtually every
> culture will have to cope with an unparalleled pressure to conserve social
> resources by applying pressure to individuals in an attempt to modify
their
> reproductive behavior and other life choices." Other "life choices" are
> likely to include death, as euthanasia becomes a "choice" for elderly or
> disabled people whose quality of life is deemed socially insupportable -
> both personally (people being made to feel they are a burden) and in terms
> of resources.
>
> Is It All In The Genes?
> Another problem which arises from the renewed belief in the power of
> genetics to provide answers (much in the way the 19th century positivists
> saw science in general as all powerful) is that there is a real danger of
> geneticisation wherein human qualities are reduced to a simple function of
> genetic codes. The complex relationships between people and the
environment
> are ignored and all talk is of genetic predisposition to this or to that.
> "Geneticization builds upon medicalization, whereby people come to
perceive
> the body in conformity with biomedical categories." reference 23 This has
an
> all too familiar resonance for disabled people.
>
> As Hughes comments demonstrate reference 24, the rise of genetic
> essentialism (or determinism) may cause people to lose sight or never even
> gain the understanding of the social, economic, cultural and political
bases
> of disability. This may not seem such a serious problem in countries like
> Britain where the movement is strong and has started to convince
governments
> to accept, at least in part, the social model. However, we should not be
> complacent nor minimise the potential risks to disabled people here or in
> other Western countries. reference 25 Furthermore, in parts of the world
> where the movement is weak and the social model all but unknown the idea
> that genetics holds the solution for the "problem of disability" might
well
> unleash nakedly eugenic policies of forced screenings and abortions and
> perhaps compulsory sterilisation and/or euthanasia. The first two have
> already happened in China, reference 26 where since July 1996 pre-natal
> testing has been made compulsory as has the abortion of any "abnormal"
> foetus.
>
> This leads on to perhaps the most worrying feature of the new genetics.
Even
> if we accept at face value the anti-eugenic statements of its proponents,
> the new genetics is creating a powerful eugenic sword that could be
> unsheathed at any moment by a government able and willing to forget the
> lessons of the 1930s. China provides a chilling example of just this kind
of
> forgetfulness and a warning of what can happen. And when the next country
> follows the Chinese model? And then the next? What practical value then
the
> 'sincere intentions' of genetic researchers?
>
> Are Impairments Desirable?
> Finally, if we embrace the social model of disability and accept that it
is
> not our impairments that disable us but society, should we be overly
> concerned about the elimination of impairments in any case (at least when
it
> doesn't involve abortion)? Aren't we always saying that we are not "the
> epileptics" but people with epilepsy - that, in short, we are not our
> impairments? Are we, for example, against polio vaccine? Has it diminished
> the value of people who have had polio? Are we proud of our impairments or
> proud of being disabled people or proud of being ourselves? Can we
usefully
> separate the two things? When is medical intervention acceptable? Only
after
> we are born? When it doesn't mess with our impairments? Does medical
> intervention (including gene therapy if and when it arrives) equate with
the
> medical model of disability?
>
> We need to be clear about how to respond to these questions because they
are
> sure to be put to us. In the first place, only on the crudest reading of
the
> social model could it be argued that this model is about rejecting medical
> treatment or research. The medical model itself is not about medical
> intervention, but rather the medicalisation of disabled people. This is
what
> we reject. Furthermore, whether or not we oppose the eradication of
> impairments is not a genuine question, for despite years of hype and
> billions of pounds, the choice of a cure simply does not exist in most
> cases. It is a question which is, therefore, mischievously beside the
point
> in the real world where the most urgent issue for disabled people is
> combating the immediate socio-economic causes of disability. We are also
not
> making a case against medical research, but rather one for a more
equitable
> distribution of effort and resources in order that a real difference can
be
> made now in the lives of disabled people.
>
> Horses and Carts/Tails and Dogs
> Perhaps, however, we are starting from the wrong place. Rather than what
> sort of genetic future we want, we should be asking ourselves what sort of
> society we want and then directing research accordingly. Would it not be
> preferable to live in a society which did not strive for some sort of
> unobtainable, and probably undesirable, genetic perfection but instead
> sought to preserve diversity and enhance standards of human decency?
>
> As disabled people, we find ourselves in the middle of the genetics
> minefield. From this precarious position we nonetheless have a unique view
> of the present and future dangers of the new genetics. We must speak out
> forcefully and effectively. Our view is far too valuable either to keep to
> ourselves or squander by adopting a sectarian, fundamentalist approach
which
> plays into the hands of those who want to write off disabled peoples'
> concerns as little more than posturing, ill-informed Luddism. At the same
> time, we must avoid being intolerant of differing views within the
movement
> as this does not sit well with the sensitivity and moral complexity of the
> issues raised by the new genetics or the varied, legitimate concerns of
> disabled people.
>
> Draft Statement On The New Genetics
> [The points made below are only suggestions of what might be adopted as a
> position statement by the BCODP on new genetics.]
>
>   1.. The BCODP, as the representative voice of disabled people's
> organisations in Britain, is greatly alarmed by many of the recent
> developments in both genetics research and clinical practice, as well as
by
> the ill-informed presentation of these developments.
>   2.. Popular ideas (and much professional opinion) that genetics will
> unlock the secrets of life and, among other things, lead to a "cure" for
> disability, has unleashed a new genetic determinism with strong eugenic
> overtones. This constitutes a serious threat to disabled people, for we
are
> not disabled by our genes or our impairments but by societies which
actively
> and passively discriminate against us. Our disability is a socio-political
> not a medical problem. Therefore, far from helping us, the new genetics
and
> the cultural and political ideology which informs it is threatening to
> foster a more negative image of disability and is likely to lead to
> increased discrimination against disabled people.
>   3.. As disabled people who have faced sterilisation, prenatal
termination,
> euthanasia and even wholesale elimination in the name of eugenics we
attest
> to the historic and continued links between genetics and eugenics and the
> dangers this poses for everyone, not just disabled people. The question of
> the value of a life is far too important to leave to geneticists.
>   4.. We are not opposed to any medical research or clinical procedures
> where the goal is treatment of illness or the alleviation of pain.
>   5.. We unequivocally support women's right to choose with respect to
their
> pregnancies, for such decisions are made in circumstances unique to each
> person. However, women must also feel able to continue with a pregnancy,
> secure in the knowledge that they will be bringing a child into a society
> which does not discriminate against disabled people. This is because we
> reject the current framework of prejudice against and fear of disabled
> people, which the new genetics has considerably exacerbated, and which at
> the moment works such a powerfully negative influence on women's choice.
>   6.. We assert that to the extent that prenatal testing and "therapeutic
> abortion" are informed by prejudice against disabled people, the
> availability of such procedures does not increase reproductive choice. It
> limits that choice. reference 27
>   7.. We affirm that our lives are not only of equal importance to
anyone's
> but also that as disabled people we offer much that is positive to
society,
> not least by demonstrating the inherent value of life itself. This is a
> vital corrective to the heartless utilitarianism underlying much of the
new
> genetics, which posits a "less messy" society free from the inconvenience
of
> disabled people.
>   8.. The new genetics not only poses a danger for disabled people. We are
> just the first in the firing line. Already insurance companies in Britain
> are lining up to load the policies of those who have evidence of "genetic
> predisposition" for heart disease or other illnesses, while multinationals
> are in the process of patenting human genes, our common heritage.
> They've come for disabled people today.
> Who will they come for tomorrow?
> Those children with the supposed "gay" gene?
> Perhaps those with the "criminal tendency" gene.
> Or those who might be alcoholic or too aggressive
> or not intelligent enough.
> Or maybe only those foetuses who might develop heart disease, cancer,
> Alzheimer's disease, or other costly ailments.
>
> The following suggestions have been made as the way forward for BCODP and
we
> welcome your comments using the form below.
>
> To insure that disabled people do not face increased discrimination
because
> of the new genetics, the BCODP want to see the following take place:
>
>   1.. That the BCODP be funded to set up a research/monitoring network on
> the social implications of the new genetics, separate from the
> genetics/bio-ethics establishment.
>   2.. That representative and accountable disabled people be on policy
> making bodies with oversight on the new genetics.
>   3.. That there is an end to the explicit discrimination in the abortion
> law which allows termination after 24 weeks only if the foetus is
diagnosed
> as having a potential impairment.
>   4.. That disability equality training based on the social model of
> disability becomes a compulsory part of all medical training as well as
> required for all practising geneticists, genetic councillors and
> obstetricians.
>   5.. That there is comprehensive social support for parents who have
> disabled children.
>   6.. That the BCODP formal contact with organisations in Britain, Europe
> and internationally who have similar concerns about the new genetics.
>   7.. That we identify the key political forums in Britain and Europe in
> which to make the collective voice of disabled people heard on this
subject.
> What do you think?
> Please send your comments by email to [log in to unmask]
>
> References
> [1] Glenn McGee, The Perfect Baby. A Pragmatic Approach to Genetics,
London,
> 1997, pp.86-87.
>
> [2] A good summary is given in DAA Newsletter Supplement, "Life, Death and
> Rights Bioethics and Disabled People". December 1997.
>
> [3] David King, "Testing Times", in The New Internationalist, no.293, Aug.
> 1997, p. 14.
>
> [4] Glenn McGee, "Drive-Through Genetic Testing Poses New Ethical
Dilemmas,"
> Academic Physician And Scientist, 1997.
>
> [5] For an excellent treatment of the issues see: Tom Shakespeare,
"Choices
> and Rights: eugenics, genetics and disability equality", in Disability &
> Society, Vol.13 no. 5 (1998)
>
> [6] Daniel J. Kevles, In the Name of Eugenics. Genetics and the Uses of
> Human Heredity, Berkeley and Los Angeles, 1986, p. ix.
>
> [7] David Pfeiffer, "Eugenics and Disability Discrimination", Disability
and
> Society, Vol.9 no. 4, 1994, pp.482-487.
>
> [8] J. Hughes, "Embracing Change with All Four Arms: Post-Humanist Defence
> of Genetic Engineering", Eubios Journal of Asian and International
Bioethics
> 6 (1996), 94-101.
>
> [9] See below, p. 4.
>
> [10] Edward J. Yoxen, "Constructing Genetic Diseases", in Troy Duster and
> Karen Garett, eds., Cultural Perspectives on Biological Knowledge, NJ,
1984.
>
> [11] McGee, The Perfect Baby, p.88.
>
> [12] David King, "The Persistence of Eugenics", in GenEthics News, no. 22
> Feb./March 1998, pp.6-8. Also see, Evelyn Fox Keller, "Nature, Nurture,
and
> the Human Genome Project", in Daniel J. Kevles and Leroy Hood, eds.,
> Sceintific and Social Issues in the Human Genome Project, London, 1992,
pp.
> 281-299.
>
> [13] McGee, The Perfect Baby, p.87.
>
> [14] This concept was first coined by Kitcher in P. Kitcher, The Lives to
> Come: the genetic revolution and human possibilities, London, 1996.
>
> [15] Mildred K. Cho, "Genetic technologies: issues for ethics committees",
> in Mid-Atlantic Ethics Committee Newsletter (date?)
>
> [16] Interestingly, in a summary of the issues around genetic testing and
> screening prepared by the National Reference Center for Bioethics
Literature
> at the Kennedy Institute of Ethics, abortion is never mentioned. SCOPE
Note
> no. 22, Genetic Testing and Screening.
>
> [17] King, p. 13.
>
> [18] Darryl Macer, "Japanese attitudes to genetic technology: National and
> international comparisons. Public and academic support for the use of
> government-funded genetic screening in Japan," in Human Genome Research
and
> Society Proceedings of the Second International Bioethics Seminar in
Fukui,
> 20-21. There was also substantial majorities in favour of gene therapy.
> March, 1992. pp. 120-137,
>
> [19] Hughes, p.98.
>
> [20] Melanie Rock, "Genetic norms, eugenic logic and UNESCO's
International
> Bioethics Committee" in Eubios Journal of Asian and International
Bioethics
> 7 (1997), pp. 108-110.
>
> [21] Kevles, p.279.
>
> [22] Glenn McGee, "Ethical issues in genetics in the next 100 years",
paper
> given at Kobe, Japan UNESCO Asian Bioethics Conference 1997.
>
> [23] Melanie Rock, pp. 108-110.
>
> [24] See above, p.3.
>
> [25] Patricia J. Rock, "Eugenics and Euthanasia: a cause for concern for
> disabled people, particularly disabled women", Disability and Society,
Vol.
> 11 no.1, March 1996, pp. 121-128.
>
> [26] King, pp. 13-14.
>
> [27] R. Hubbard, "Abortion and disability: who should and who should not
> inhabit the world", in L. Davis, ed., The Disability Studies Reader, NY,
> 1997, p. 199, quoted in Shakespeare, Choices and Rights.
>
> Copyright © 2002-03 The British Council of Disabled People.
>
>
>
>
> [Non-text portions of this message have been removed]
>
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