A quick browse of the topics listed on the current front page of the Change.org web site paints a clear picture of a politically progressive organization; one that is supportive of human rights and the natural environment in which we all must live and exercise those rights. The web site shows compelling campaigns against the genocide in Darfur, for humanitarian relief in the Congo and Gaza, demanding an end to plastics killing marine life and arguing for increased health care spending. And yet, despite this generally strong commitment to human rights and the environment, Change.org has decided to oppose the human rights of autistic children, specifically the rights of autistic children, rights enjoyed by all children, to treatment and cure of their medical conditions, to become fully functioning members of society and to have their voices heard through their parents. This regressive, anti-human rights move by Change.org was implemented recently by hiring two bloggers, Kristina Chew and Dora Raymaker, who are leaders of an extremist movement which opposes these human rights of autistic children.
Human Rights of Autistic Children
The United Nations has pronounced on several occasions on the subject of the human rights of children. 2009 marks the 50th anniversary of the United Nations Declaration of the Rights of the Child Proclaimed by General Assembly resolution 1386(XIV) of 20 November 1959 but international bodies have long called for recognition and action to protect the human rights of children as indicated in the preamble to the 1959 declaration which references the 1924 Geneva Declaration of the Rights of the Child and the Universal Declaration of Human Rights as predecessor statements affirming the human rights of children. The preamble calls upon governments and others to recognize and act on the rights of children:
Whereas mankind owes to the child the best it has to give,
Now therefore,
The General Assembly
Proclaims this Declaration of the Rights of the Child to the end that he may have a happy childhood and enjoy for his own good and for the good of society the rights and freedoms herein set forth, and calls upon parents, upon men and women as individuals, and upon voluntary organizations, local authorities and national Governments to recognize these rights and strive for their observance by legislative and other measures progressively taken in accordance with the following principles
Principle 2
The child shall enjoy special protection, and shall be given opportunities and facilities, by law and by other means, to enable him to develop physically, mentally, morally, spiritually and socially in a healthy and normal manner and in conditions of freedom and dignity. In the enactment of laws for this purpose, the best interests of the child shall be the paramount consideration.
The child shall enjoy special protection, and shall be given opportunities and facilities, by law and by other means, to enable him to develop physically, mentally, morally, spiritually and socially in a healthy and normal manner and in conditions of freedom and dignity. In the enactment of laws for this purpose, the best interests of the child shall be the paramount consideration.
Principle 4
The child shall enjoy the benefits of social security. He shall be entitled to grow and develop in health; to this end, special care and protection shall be provided both to him and to his mother, including adequate pre-natal and post-natal care. The child shall have the right to adequate nutrition, housing, recreation and medical services.
Principle 5
The child who is physically, mentally or socially handicapped shall be given the special treatment, education and care required by his particular condition
The UN Declaration of the Rights of the Child calls not just upon governments but also upon all voluntary organizations, parents, men and women to respect the rights therein set out. Change.org and its bloggers are directed by the Declaration to recognize those principles. It is a direction with which they refuse to comply.
Change.org has endorsed the views of an organization and individuals, and given them a platform, who refuse to recognize a child's right to be given the opportunity to develop mentally and socially in a normal and healthy manner, as set out in principle 2, to grow and develop in health with adequate medical services as set out in principle 4. Change.org does not recognize the right of autistic children, as children with mental handicaps to be given the special treatment, care, and education required by their autistic condition as set out in principle 5.
Change.org, and its staff bloggers, Dora Raymaker and Kristina Chew, also refuse to recognize important elements of Principles 6 and 7, those elements which give primary responsibility for the care of autistic children to their parents, not to adult strangers who share some aspects of their autistic disorders but their parents, including parents seeking treatment for their own children and their medical conditions.
Change.org Refusal to Recognize UN Declared Human Rights of Autistic Children
It is not necessary to go to the voluminous writings of Kristina Chew, or ASAN which was cofounded by Dora Raymaker, to find evidence of Change.org's opposition to the human rights of autistic children. These two Change.org bloggers have wasted no time dumping their opinions on the internet via their new Change.org platform. Put simply, but accurately, these two bloggers do not recognize the right of autistic children to be treated for, and cured of, their autistic disorders.
Nor do they recognize that the responsibility for the best interests of these children rests with their parents .... not with strangers like Ms Chew or Ms Raymaker or their colleagues in ASAN. In particular they do not recognize the responsibility of parents to represent their childrens' best interests, when that representation seeks to obtain cures for their childrens' medical conditions, their neurological disorders, their autism disorders.
10 Autism Controversies
On December 31, 2008 Change.org published an article by Chew and Raymaker called 10 Autism Controversies. The article sets out the Chew/Raymaker/Neurodiversity position on various autism matters. The article is simplistic, unfair to the views of parents who do not share their views, and totally one sided.
It clearly states though the position of Change.org on the right of autistic children, more properly the lack of a right of autistic children, to treatment for, and cure of, their autism disorders:
It clearly states though the position of Change.org on the right of autistic children, more properly the lack of a right of autistic children, to treatment for, and cure of, their autism disorders:
2. Recovery from autism.
Autism is a lifelong disability that is most likely genetic in origin. Nonetheless, claims that children have been "cured" from autism and have lost their diagnosis have been reported and are often given excessive attention in the media. But focusing on recovery distracts from attending to the needs of autistic individuals in the here and now. Parents may put all their energy and resources into so-called "cures" for autism, instead of focusing on the individual in front of them, and on the educational needs of that individual. Recovery from autism is neither possible, nor desirable.
3. Support vs. cure.
The idea of "cure" is tied to the medical model of disability which holds that a person with a disability is "sick" and needs to be "cured;" some internal flaw has "caused" the disability. This is the perspective still taken by popular culture and many autism organizations.
In contrast, the socio-ecological model of disability holds that there are problems instead in the relationship between the disabled individual and their environment; disability is "caused" by a poor person-to-environment match. This perspective rejects the idea of "cure" as nonsensical (and in some ways offensive) as it does not view disability as a flaw that resides solely within an individual. Instead, this perspective asks, what needs to be done to bring the individual and their environment into better alignment?What is not being expressly stated in the Change.org comments opposing cures, and research to find cures, for autism disorders, is that the criticisms are directed at the many parents who seek to cure their childrens' autism disorders, medical conditions defined by the Diagnostic Statistical Manual of the American Psychiatric Association. If governments, particularly the US federal government, are now discussing investmentng funds for research into the environmental causes of autism, and cures for autism, research that has heretofore been discouraged by public health authorities, it is because of the activism of parents. These parents in seeking cures for their childrens' autism disorders are fulfilling their responsibilities pursuant to the United Nations Declaration of the Rights of the Child. It is they whose views are dismissed with contempt and presumed omniscience by Change.org and their "autism" bloggers.
It is the parents who seek cures for their childrens' autistic disorders who recognize the human rights of their children. It is unfortunate that Change.org has embraced an ideological movement which rejects and refuses to recognize those rights.
autism
Harold,
ReplyDeleteThank you. It's too bad the loudest parents of autistic children who also seek cures refuse to join you in exposing the fraud being perpetrated by ASAN, Neurodiversity and Change.org.
I find that very interesting.
I am sick and tired of parents putting other parents down for trying to cure their child. Stop fighting parents that want a cure. If you do not want a cure then that is your right not to take it. It is not your right to decide for families in search of cures to stop it. If you enjoy seeing your child struggle for basic life skills then by all means continue. I for one do not. I want my child to have the opportunity to not struggle with day to day living skills. It breaks my heart when my child is upset and can not tell me what is wrong. I feel as a parent I should be able to comfort my child and help solve their problems. This is not an easy task when your child is non-verbal. Yes I understand there are different ways to communicate but if there is the option to cure my child's inability to express language without being invasive it is my choice not yours to make that decision. You have your children and you have your right to speak for them. You do not have the right to make decisions for mine. We are not hurting you by searching for a cure. I suggest you focus on your children and leave the rest of us to advocate for a cure or federal coverage for scientifically proven treatments. What do you hope to gain by not searching for a cure? Please do not answer this question with acceptance. If we did not accept our children we would not be caring for them and trying to make their lives easier.
ReplyDeleteHarold, awesome work on this topic. I hope parents that are just getting the diagnosis come across your site. I believe change.org has a right to their opinions however, I am against how they express them. They should change their name to nochoice.org. For those that are high functioning and do not want a cure that is your right. For parents with severely affected children it is your right to make the decision to cure or not to cure. It is also your right to advocate for medically necessary treatment coverage and causes. However, I believe anyone with a diagnosis of autism no matter where they are on the spectrum should have the right to medically necessary treatment. Treatments for anyone with autism should be fully covered through medicare.
Change.org does not have the right to oppose human rights for anyone.
Harold, have you contacted change.org at all to express your perspective? It seems the only way to get action is to repeat the obvious to people..."you don't speak for my situation!!" As always, you're right on the money.
ReplyDeleteClaire
ReplyDeleteI did send an email to Mr Ben Rattray on the Change.org site but I am not sure it went through.
Harold
Thank you John and Christine.
ReplyDeleteI intend to continue. I don't think parents of autistic children have any choice. We either resist this regressive movement or we sit back and let strangers with little in common with our children dictate their futures, in between television and New Yorker magazine interviews.
Harold,
ReplyDeleteI wrote to Rattray too before he threw me off his site, no reply.
Any idea how long my complaint to the FTC about Ne'eman might take to process? It will be an easy win if they don't just throw it in the trash.
Several progressive Ideas (and some not so) have found out the hard way that the change.org "Ideas" project is so fraught with problems as to be incapable of fulfilling its mission, let alone potential for real change.
ReplyDeleteI have posted a critique about the ballot stuffing, censorship and behind-the-scenes manipulation of Ideas there entitled I committed voter fraud at change.org