AUTISTIC MINORITY INTERNATIONAL
WWW.AUTISTICMINORITY.ORG
Geneva, 3 April 2014
Speech at our side event during the 11th session of the Committee on the Rights of
Persons with Disabilities (CRPD)
MOVING FROM AUTISM AWARENESS TO AUTISM ACCEPTANCE
Esteemed members of the CRPD,
Ladies and gentlemen, dear colleagues,
Thank you for offering us the opportunity to address you on the occasion of the UN's
World Autism Awareness Day 2014. Let me start by saying that autistic self-advocates
understand autism awareness as only the first step on the way toward autism
acceptance, recognition, and respect for autistics. Only autism acceptance will ensure
our full and equal participation in all areas of public, economic, and social life, as called
for by a 2012 resolution of the United Nations General Assembly, and only autism
acceptance will meet the requirements of the Convention on the Rights of Persons with
Disabilities.
My name is Erich Kofmel. I am the Founder and President of Autistic Minority
International, a Geneva-based NGO and the first and only autism self-advocacy
organization active at the global political level. We aim to combat bias and prejudice and
advance the interests of an estimated seventy million autistics, one percent of the world's
population, at and through the United Nations, World Health Organization, and human
rights treaty bodies. Autistic Minority International is an associate member of the
Conference of NGOs in Consultative Relationship with the United Nations (CoNGO). A
national of Switzerland by birth, I hold Masters degrees in Public and Development
Management, with specialization in Governance and Public Policy, and Roman Catholic
Theology from universities in South Africa as well as a Postgraduate Certificate in
Comparative and Cross-Cultural Research Methods from the UK. Like many, I was
diagnosed with Asperger's syndrome only as an adult, at age 38, after a lifetime of
struggle.
Allow me to quickly introduce the other speakers on our panel.
It is with regret that I have to inform you that our second announced speaker, Sarai
Pahla, a native of Zimbabwe and citizen of South Africa who qualified and trained as a
medical doctor in South Africa, will not be able to join us today. Sarai belongs to the large
group of autistics, not only in developing countries, who had no opportunity to obtain a
formal diagnosis due to a lack of professionals qualified to diagnose autism in adults.
Hers would have been a very important perspective indeed.
ADVANCING AUTISM SELF-ADVOCACY AT AND THROUGH THE UNITED NATIONS,
WORLD HEALTH ORGANIZATION, AND HUMAN RIGHTS TREATY BODIES
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Martin Schöngarth is Speaker of Enthinderungsselbsthilfe von Autisten für Autisten, ESH,
a German DPO run by and for autistics. It was founded in 2006, which makes it the
oldest autism self-advocacy organization active in the entire German-speaking region. In
2013, ESH received the Canadian "International Naturally Autistic People Award". Due to
autism, Martin does not participate in physical meetings. He will be participating remotely,
following the proceedings via webcast and captioning. His presentation will be delivered
using text-to-speech software, and I will be in contact with him via online chat so that he
can respond himself to any questions you might have.
Magda Mostafa is the only non-autistic speaker today. A dual citizen of Canada and
Egypt, she is an Associate Professor in the Department of Construction and Architectural
Engineering at the American University in Cairo and leading expert on architecture for
autism in the context of Accessibility. She is an associate at the Cairo-based architectural
firm, Progressive Architects, and served as Regional Deputy Vice President for Africa on
the UNESCO/UIA Validation Council and Architectural Education Commission.
I will commence my own reflections by saying that to autistic self-advocates, autism is a
distinct culture and identity. The only one we know. Regardless of where in the world we
live, autistics are more like each other than like the people surrounding us. Being autistic
is like being a foreigner in one's own native country. Self-advocates view autism not as
something to be cured, but as a neurological difference that is equally valid. The autistic
minority includes everyone on the autism spectrum, those diagnosed as well as those
children and adults remaining undiagnosed for whatever reason. The autistic minority
also includes those of us who hide their condition for fear of discrimination.
The Convention on the Rights of Persons with Disabilities recognizes deaf culture and
identity as worthy of protection and preservation and many provisions and references
have been included in the Convention catering specifically to the needs of the deaf.
Unfortunately, autistics did not have a comparable lobby when the Convention was
drafted. Autism is an often invisible disability, even to other autistics. We were only able
to find each other with the advent of the Internet and the emergence of autistic
communities in cyberspace. Even those of us who do not speak may be able to express
themselves in writing online, as evidenced by Internet fora that unite autistics across the
spectrum, from least to most severe. Also, by the very nature of autism we are at a
disadvantage when it comes to lobbying. Challenges and severity vary widely between
individuals, but commonly include difficulties understanding, and using, facial
expressions, body language, tone of voice, and non-literal language, unusual speech and
eye contact, apparent lack of empathy, dislike of small talk, sensory overload,
faceblindness, and anxiety. Despite all this, we are here now, at the United Nations, in
front of the CRPD, to tell you that autistic culture and identity deserve the same level of
recognition and protection afforded to the deaf.
We are deeply concerned about any kind of research aiming for prenatal genetic
screening or other tests that would allow the abortion of foetuses at risk of autism.
Already this is a reality for trisomy 21, or Down syndrome, and large sums of money are
spent on research whose ultimate goal is the eugenic genocide on autistics. We call on
States parties to the Convention to end all public funding of research in this direction and
the organizations promoting it. Which State party will be the first to ban any such
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research on its soil and lead the international community in condemning any such
research, intentions, and practices?
In the context of the recent autism resolutions of the UN General Assembly and the
Executive Board of the World Health Organization, we are equally worried that measures
aimed at the management of autism in children and the early interventions recommended
by many so-called autism experts may in fact be not so veiled attempts at behaviour
modification and normalization, trying to turn autistic children into something they are not
and cannot be, namely non-autistic. It is utterly unacceptable, for instance, when, as
frequently happens, therapists advise parents to deprive their child of assistive and
augmentative communication devices so as to force him or her to speak.
Anything of this kind is clearly not compatible with the Convention on the Rights of
Persons with Disabilities, which enshrines our right to life and guarantees autistic children
the right to preserve their identity. The Convention demands respect for difference and its
acceptance as part of human diversity.
Too often, it is wrongly assumed that autistics cannot or should not be consulted about
decisions that will affect us, many of them potential sources of human rights violations,
such as our living arrangements or medical and psychological treatment. Instead, nonautistics, among them parents, professionals, and experts, make decisions on our behalf,
but without our consent. Most autistics, be they children or adults, can make their own
decisions if barriers are removed and support is provided. We thus welcome the
clarification issued by the CRPD in its Draft General Comment No. 1 that the rights
derived from article 12 of the Convention regarding equal recognition before the law
(quote) "apply as at the moment of ratification. States parties have an obligation to
immediately realize the rights provided for in article 12, including the right to support in
the exercise of legal capacity. Progressive realization [...] does not apply to legal
capacity" (unquote).
We believe that the same principle must apply to recognition and protection of autistic
identity. Progressive realization of the right to life and the right to identity is not an option.
It is unfortunate that the public discourse on autism is dominated by negative
stereotypes, often perpetuated by the very organizations that would presume to be
speaking for us. In the implementation of the Convention, the GA resolution, and the
WHO resolution, it is of paramount importance that decision-makers at the local, national,
regional, and global levels start working with and funding autistic self-advocacy
organizations and initiatives, rather than continuing to rely on autism-related
organizations run by often misguided parents of autistic children, with no or little autistic
involvement.
We welcome the CRPD and WHO's move away from long-term institutionalization of
autistics, but caution against a purely non-autistic understanding of "community-based,
non-residential services". Autistic communities should not be thought of as physical in
nature. Autistic communities tend to meet online, for example in Internet fora. Autism
self-advocacy organizations frequently operate across borders, assisted by information
technology. Support or services to autistics may thus be provided by an individual or a
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group that is based elsewhere. The definition of community needs to be expanded to
take into account autistic realities and preferences.
While it seems customary to deprive institutionalized persons with disabilities, including
autistics, of access to information and communication, this is particularly devastating to
those of us who do not speak and rely on the Internet as their sole means of
communication. The importance of unrestricted access to online communication for
autistics cannot be emphasized strongly enough. Being cut off from the Internet also
means being cut off from the autistic community and any available peer support.
Some autistics consider physical meetings of any kind not barrier-free and thus
inaccessible to them. We strongly encourage the CRPD to create mechanisms to
accommodate this and facilitate remote participation of persons who cannot be in the
conference room because of their disability. This should not be one-way communication,
as with a simple webcast, but fully interactive. In order to remove barriers for autistics, the
written word must be given equal weight as the spoken, and electronic communication,
such as e-mails or chats, cannot be treated as inferior to communication face-to-face or
on the phone. Physical presence at CRPD sessions must not be a requirement for
impact.
Lastly, we believe that all autistics should be taught self-esteem, self-confidence, and
how to advocate for ourselves as a matter of fact.
Thank you.
Erich Kofmel, President
Autistic Minority International
Background information
In 2007, the United Nations General Assembly declared 2 April World Autism Awareness
Day. On that day in 2013, UN Secretary-General Ban Ki-moon wrote: "This international
attention is essential to address stigma, lack of awareness and inadequate support
structures. Now is the time to work for a more inclusive society, highlight the talents of
affected people and ensure opportunities for them to realize their potential."
In 2012, the United Nations General Assembly unanimously adopted resolution 67/82
"Addressing the socioeconomic needs of individuals, families and societies affected by
autism spectrum disorders, developmental disorders and associated disabilities". In this
resolution, the UN member states recognize "that the full enjoyment by persons with
autism spectrum disorders [...] of their human rights and their full participation will result
in significant advances in the social and economic development of societies and
communities" and stress "the important contribution that non-governmental organizations
and other civil society actors can make in promoting human rights for [...] all individuals
with autism spectrum disorders [...] and their integration in societies". The GA voices its
concern "that persons with autism spectrum disorders [...] continue to face barriers in
their participation as equal members of society" and calls this "discrimination" and "a
violation of the inherent dignity and worth of the human person".
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