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It is also depressing that very large sums of money are available for medical research to eliminate, cure, modify etc autistic people, but that it is very difficult to obtain funding for any research that would be useful to autistic people or carried out by us. Regards Marion On 05/08/2015 00:38, Frank Hall-Bentick wrote: > This medical model of prevention seems to be a conservative push back against the Convention on the rights of persons with disability. > > > > While we all support better public health are all people, this specific targeting of particular disabilities seems to be more about the elimination of people with particular disabilities than better public health. > > > > The elimination of poverty around the world is about development, education and employment, it is not about eliminating specific disabilities which would have no impact on families if services, awareness and respect of difference were in fact a universal practice. > > > > This continuing quest to eliminate specific disabilities continues to demonise those people living with these disabilities, this must be resisted and all people be seen as an equal part of humanity. > > > > Regards, Frank > > > > > > > > From: [log in to unmask] [mailto:[log in to unmask]] > Sent: Wednesday, 5 August 2015 3:31 AM > To: [log in to unmask] > Subject: RE: [IDA_CRPD_Forum] UN commits to preventing autism (post-2015 agenda)!! [1 Attachment] > > > > > > Dear Renée, > > Thanks for the link. > > While those who introduced this language into the post-2015 agenda obviously were targeting autism and other developmental disorders, the later addition of neurological disorders (probably by another state) and the link to non-communicable diseases opens up the possibility that this language will be used to seek and justify "prevention" of a range of other disabilities or conditions, particularly (but not limited to) those that exist from (or before) birth, such as spina bifida, (congenital) hydrocephalus, cerebral palsy, Down syndrome, and possibly even certain psychosocial disabilities (mental health falls under NCDs at the WHO), such as schizophrenia of childhood (a diagnosis that in some countries is applied to autistic children, as well). > > Like President Kennedy in the article, "prevention" of autism today is justified as a matter of financial burden to families and the state, as in a 3 August 2015 press release on research conducted in the US, which estimates "Autism Cost [...] to Reach Nearly $500 Billion, Potentially $1 Trillion, by 2025" in the US alone. Of course, that study was sponsored by Autism Speaks, a notorious US charity that claims to speak for autistic persons worldwide (also at the UN), but does not have any autistic persons in its leadership. According to their mission statement, they seek to fund "research into the causes, prevention, [...] and a cure for autism" and their co-founder is on record as saying that their ultimate aim is to "eradicate autism for the sake of future generations". > > http://www.autismdailynewscast.com/autism-cost-estimated-to-reach-nearly-500-billion-potentially-1-trillion-by-2025/29932/pressrelease/ > > Autism Speaks is extremely influential at the UN and enjoys the support of the wife of UN Secretary-General Ban Ki-moon as well as a large number of first ladies the world over. Their main supporters are Bangladesh and Qatar. They have basically bought the WHO, by donating at least one million US dollars for autism research and programming there since 2012. We just made a submission to the CRPD Committee highlighting Qatar's collaboration with Autism Speaks in terms of autism "awareness-raising" at and through the UN (article 8 of the CRPD; attached), which leads to results such as this language in the post-2015 agenda. > > As you say, this development should be of concern to other groups of persons with disabilities as well. > > We would certainly be interested in working with other groups that face similar issues. > > Best wishes, > > Erich Kofmel, President > Autistic Minority International > [log in to unmask] > www.autisticminority.org > > Advancing autism self-advocacy at and through the United Nations, World Health Organization, and human rights treaty bodies. NGO based in Geneva. > > > > ---In [log in to unmask], <renee.jopp@...> wrote : > > Just after reading your post, I came across this recent Lancet article about “mental health problems” and prevention: > > > > “An ounce of prevention”: <http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2815%2961437-4/fulltext> http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2815%2961437-4/fulltext > > > > In the light of what you have written, an interesting read... > > > > With regard to birth defects such as spina bifida and (congenital) hydrocephalus, which can cause lifelong disabilities, we too are faced with the issue that prevention is more and more about prenatal diagnosis and termination of pregnancy, and less about encouraging research into the causes and implementing primary prevention measures such as folic acid fortification of staple foods and ongoing awareness campaigns. > > > > > > Renée Jopp - IF Information officer > <mailto:renee.jopp@...> renee.jopp@... > International Federation for Spina Bifida and Hydrocephalus > Cellebroersstraat 16, 1000 Brussels - Belgium > T: +32 2 502 04 13 | W: www.ifglobal.org > > PUSH: <http://www.pu-sh.org/> www.pu-sh.org > > twitter: <https://twitter.com/ifsbh> @ifsbh | <https://twitter.com/PUSHtogether> @PUSHtogether > > facebook: <http://www.facebook.com/ifsbh> www.facebook.com/ifsbh | <https://www.facebook.com/pages/PUSH/206522686192290> www.facebook.com/push > > <http://www.ifglobal.org/> IF - International Federation for Spina Bifida and Hydrocephalus <http://www.pu-sh.org/> PUSH - People United for Spina Bifida and Hydrocephalus > > Van: [log in to unmask] [mailto:[log in to unmask]] > Verzonden: maandag 3 augustus 2015 16:59 > Aan: [log in to unmask] > Onderwerp: [IDA_CRPD_Forum] UN commits to preventing autism (post-2015 agenda)!! > > > > > > Dear all, > > > > In a highly disturbing development, UN member states have just committed themselves to preventing autism. > > > > Over the past week, UN member states negotiated the post-2015 development agenda (now called "Transforming Our World: The 2030 Agenda for Sustainable Development"). The final text was agreed this weekend and will be adopted at a UN summit with heads of state on 25-27 September. It is quite likely the most important document to be adopted by the UN in fifteen years. > > > > After three years of work on this agenda, suddenly this month language was introduced that calls for the prevention of developmental disorders, which includes autism. > > > > There's nothing about this in the draft version of 8 July, a first reference in the draft of 26 July, and an extended version in the final text of 1 August. While on 26 July only "greater efforts" were called for, on 1 August suddenly it was outright commitment to the prevention of autism, which in effect would mean prenatal genetic testing that allows for the abortion of foetuses "at risk" of autism. > > > > Of all the so-called non-communicable diseases – which includes cancer, heart disease, stroke, diabetes, Alzheimer's, and so on – the only ones mentioned specifically in the agreed text are "behavioral, developmental, and neurological disorders". > > > > Please recall that autistic persons do not view autism, a so-called developmental disorder, as a disorder or disease at all, but as a neurological difference that is equally valid. > > > > It is disappointing, but not surprising, that none of the disability advocates present at the negotiations in New York even found it necessary to alert autistic persons to these changes threatening our very existence. > > > > Timeline: > > > > 8 July (paragraph 24): no reference to "developmental disorders" > > https://sustainabledevelopment.un.org/content/documents/7603Final%20draft%20outcome%20document%20UN%20Sept%20Summit%20w%20letter_08072015.pdf > > > > 26 July (now paragraph 27): "We are committed to devoting greater efforts to the prevention and control of non-communicable diseases, including behavioural and developmental disorders, which constitute a major challenge for sustainable development." > > https://sustainabledevelopment.un.org/content/documents/7849Cover%20Letter%20and%20Outcome%20document%20for%20the%20UN%20Summit%20to%20adopt%20the%20Post-2015%20Development%20Agenda_26072015.pdf > > > > 1 August (now paragraph 26): "We are committed to the prevention and treatment of non-communicable diseases, including behavioral, developmental, and neurological disorders, which constitute a major challenge to sustainable development." > > https://sustainabledevelopment.un.org/content/documents/7876TRANSFORMING%20OUR%20WORLD_Text%20for%20adoption.pdf > > > > Fortunately, prevention of developmental disorders is still only mentioned in the introduction, but not in the actual goals and targets that UN member states were reluctant to open up for further discussions. > > > > Goal 3 is "Ensure healthy lives and promote well-being for all at all ages". > > > > Target 3.4 is "By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being". > > > > There is still a possibility that the prevention of autism will feature as an indicator (how the achievement of the targets will be measured). > > > > We view these developments as a clear violation of the rights of autistic persons under the CRPD. > > > > Regards, > > > > Erich Kofmel, President > > Autistic Minority International > > e.kofmel@... > > www.autisticminority.org > > > > Advancing autism self-advocacy at and through the United Nations, World Health Organization, and human rights treaty bodies. 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