Human Rights Committee, 16 July 2014
Side event on "Liberty and Security of Disabled Persons: Freedom from Involuntary Mental Health Detention" during the 111th session of the Human Rights Committee (HRCttee), at the Office of the United Nations High Commissioner for Human Rights (OHCHR), Palais Wilson, Geneva, Switzerland, 16 July 2014, 2.00-3.00 pm
Jorge Araya, Secretary, Committee on the Rights of Persons with Disabilities
Tina Minkowitz, International Representative, WNUSP
Hege Orefellen, WNUSP/We Shall Overcome (Norway)
Erich Kofmel, President, Autistic Minority International
Eric Lucas, Coordinator, Alliance Autiste (France)
Speech by Erich Kofmel:
Esteemed members of the committee,
Ladies and gentlemen, dear colleagues,
Our NGO, Autistic Minority International, headquartered in Geneva, is 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 UN, WHO, 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) and a member of the NGO Forum for Health, a Geneva-based consortium of organizations committed to promoting human rights and quality care in global health.
Myself, I was diagnosed with Asperger's syndrome, a condition on the autism spectrum, only as an adult, at the age of 38, after a lifetime of struggle. It is a common misperception that autism only affects children. Fact is, many autistics grow up without a diagnosis. And whilst there is still a severe lack of professionals qualified to diagnose autism in adults, more and more autistic adults do get assessed and, finally, diagnosed, often subsequent to a child or grandchild having been found to be on the autism spectrum. Other adults may get diagnosed because of a so-called autistic middle-age burnout, an event that occurs when we can't go on hiding our autistic symptoms any longer, when keeping up the façade of normalcy starts to take too much energy, and the coping strategies we developed growing up ultimately fail.
Ours is an often invisible disability and therefore no adjustments or accommodations are made for us. We spend our lives running on against barriers that non-autistics can't even perceive. Many autistics describe autism as akin to a wall of glass between themselves and other people. Autistic persons form a particularly vulnerable group when it comes to involuntary mental health detention. They frequently get misdiagnosed by psychiatrists who are unfamiliar with the autism spectrum or ignorant of the differences in presentation between children and adults.
Autism is not a mental illness, but a lifelong neurological difference that is both genetic and hereditary. There is no cure, and we do not believe that a cure will ever be found. Autistic self-advocates view autism as 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. 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.
Autistic self-advocates understand autism awareness as only the first step on the way toward autism acceptance, recognition, and respect for autistic persons. 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 UN General Assembly, and only autism acceptance will meet the requirements of the Convention on the Rights of Persons with Disabilities (CRPD).
The CRPD's move away from the long-term institutionalization of disabled persons, including autistic children and adults, was affirmed by the WHO's World Health Assembly in its autism resolution of May 2014. The 194 member states of the WHO committed themselves "to shift systematically the focus of care away from long-stay health facilities towards community-based, non-residential services". This echoes similar declarations in the World Health Assembly's mental health action plan of 2013, which finds that "[g]lobally [...] annual spending on mental health is less than US$ 2 per person and less than US$ 0.25 per person in low-income countries, with 67% of these financial resources allocated to stand-alone mental hospitals, despite their association with poor health outcomes and human rights violations". So says the WHO.
The CRPD itself has, to date, been ratified or acceded to by 147 States parties – three quarters of the world's nations – and signed by 11 more. Most of them are also States parties to the International Covenant on Civil and Political Rights (ICCPR). They themselves recognized that time has moved on and Article 9 of the ICCPR must be reinterpreted in light of – and enlightened by – the provisions of more recent human rights treaties when it comes to mental health detention and the institutionalization of persons with disabilities such as autism. States parties themselves committed to following stricter rules than those called for by the jurisprudence of your committee.
Autistic persons looking to the Human Rights Committee for protection find it hard to understand how the committee can continue to uphold involuntary mental health detention against the international consensus, particularly as the ICCPR does not even mention mental health. We urge you to either keep quiet on the subject of mental health detention going forward, especially with regard to paragraph 19 of your Draft General Comment on Liberty and Security of Person, or align your jurisprudence with the CRPD, so as to ensure the application of universal standards of protection across existing international human rights instruments.
It is our firm belief that the involuntary detention of autistic persons, justified on mental health grounds or similar, can never live up to the heightened standards outlined in paragraph 12 of the Draft General Comment, according to which "detention may be authorized by domestic law and nonetheless be arbitrary". More often than not the institutionalization of autistics lacks predictability and necessity, is disproportionate, inappropriate, and unjust, and plain unreasonable.
This is particularly evident in the case of autistic children and adolescents. We hold that the safeguards of paragraph 18 regarding migrant children must equally apply to children with disabilities, including those on the autism spectrum. There can be no justification for the prolonged and often indefinite institutionalization of children simply because they are autistic or otherwise disabled. The wishes and interests of parents or guardians who may perceive such children as burdens must not be confused and equated with the best interests of the child. It is never in the best interest of the child to be deprived of liberty.
View our written comments: www.ohchr.org/Documents/HRBodies/CCPR/GConArticle9/Submissions/AutisticMinorityInternational_DGC.doc
View the joint submission by WNUSP, IDA, Autistic Minority International, Alliance Autiste, and others: www.ohchr.org/Documents/HRBodies/CCPR/GConArticle9/Submissions/jointsubmission37ngos.docx
Speech by Eric Lucas:
Ladies and gentlemen,
It's not easy for me to speak like this in public, because I'm autistic. I was diagnosed with Asperger's syndrome. But I agreed to give my testimony today at the United Nations because of the way mental health laws are applied in France.
Twenty years ago, I went to a psychiatric hospital and asked for help because I was despaired, because of problems with society that made my life almost impossible. But the doctors apparently did not understand me (or believe me) and they rejected me. They even used the police to take me away from the hospital. Then, because of the suffering and injustice, I started to be slightly violent, shouting and crying, and finally the same hospital, after a decision taken within a few minutes, decided to detain me there, and this lasted for one year and 3 months!
I had no way to defend myself, no clue about how long it would take, no justifications, no hope, nothing, although I was asking for that all the time. Even my family or anyone would not have had the right to take me away from this nightmare.
Not knowing for how long you will be institutionalized is really awful, especially for an autistic person. Two or three doctors who are colleagues decide what they want, according to their fears, beliefs or whatever. You can't keep your dignity, your pride. Even if someone is imprisoned for a crime, they can still think and believe in who they are – but not in those hospitals where you have to regress to the state of a little child until you believe that they are right, to restart from scratch (as they expect), where you have the right to nothing, nothing not decided or approved by the doctors, where your very own, deep personality is negated, erased!
They could not completely erase me, format me: they just believed that they did. It took about 10 years for me to manage to "unformat" myself, to retrieve who I am. But many people are not as lucky as me, and they are still wasting their life between walls of concrete.
I can remember a young guy, very kind, who was there with me. I still hear him, almost crying "Eric, I've been here since 4 years. I'm so fed up with the public psychiatry. I would like to go out, so much". Fifteen years later, I learnt that he still lives in an institution!
Who can do something against the incredible power of these doctors? They decide for you what is good and what is not. They tell you if you are suffering or not, if your ideas are delirious or not, etc. You eat what they decide, you have to take their pills, they put needles in your body and inject you things that you don't know ... You have the freedom to do what they accept, like reading books, or walking in the corridors, or sleeping, but not too much. No liberty, no projects, no love, nothing. Just waiting. Is that a life? I remember watching the cats outside, through the windows, and thinking how lucky they were.
I was asking for freedom, to be released, I was even begging, but they did not bother. Although I was always quiet during those fifteen months, as they recorded. They also wrote several times that they could not understand me! Only last year was I diagnosed with Asperger's syndrome, after discovering it by myself. Hence, these doctors who had the right to take my liberty because they were supposed to know their job so well were not even able to see that I was autistic. Now, I know that I never had any real psychiatric trouble. Now, I know that I'm just different.
The doctors finally accepted to give some consideration to me, only when I understood that I had to agree with them, to think like them, which I did. I had to simulate a successful slow brainwash, to escape this ordeal.
I've heard that nowadays the situation has improved a little bit, with the right to a lawyer, but it seems that it's very superficial, and even the lawyers themselves are complaining.
The worst of all is that I know that such a nightmare can happen to me again. In fact, in France it can happen very easily. I narrowly escaped it this winter. Sometimes, I still have nightmares during my sleep, about these people coming and taking me, ruining my life.
Society constantly organizes itself by conditioning and formatting everything and everyone. Therefore, you have to be "normal". Be normal, or suffer. This is the unwritten social rule. It is not very difficult for non-autistic persons to be normal, but it is highly difficult for us autistics, and only a small part of us is able to play that role, which is imposed on us.
Now I realize that many of the other people kept with me in that hospital were probably autistic too, and not dangerous at all. They were like me, kind, and with their own "personal world". The hospital was there just to keep us from society, which does not understand us.
When I think back to my co-detainees, over fifteen months I did not notice any change, any improvement, even the slightest. How can you improve, and learn life, when life is a hospital, always the same walls and corridors and persons? When other patients barely talk and the medical staff has rights that you don't have? When they show no empathy or compassion, which was the only thing I needed and could not find in society?
Today, I know the problems of autistics in France, and I know that I was right in my feelings. Autistics are excluded like unwanted beings, parked or warehoused, and they are "raw material" for the medical industry, at least to some extent. That's why it is so difficult to defend ourselves against this lobby. Society does not care, because we are only one percent. And also they know that autistics are intelligent, that we may show that "the king is naked" – another reason to keep us as far away as possible, to treat us like "madmen" or "dangerous".
No one wants to understand that all this was total abuse. During twenty years, I've never been able to find any real assistance to defend myself. Until today, I write letters in vain. I had a lawyer in 2000, and she said that it's impossible to do anything. She said that it's not possible to go back in time to search for facts and details. For instance, when the law requires a "medical certificate with circumstances" doctors are in the clear when they write "he was aggressive", when in fact I was highly irritated, which is different and legitimate in such an unjust situation! When they write "he had barricaded himself in the waiting room", it seems impressive, but in fact I had just put my suitcase against the glass door, because I needed to be alone, and it was still easy to push the door. But they see only what they want to see.
I've created an organization called "Alliance Autiste", in an attempt to help and defend ourselves, for instance by creating special places for autistics caught in a social distress crisis, in order to avoid such nightmares like mine. Needless to say that we do not receive any support from the state nor anyone else.
There are millions of autistics in the world, needing help, needing compassion. Not deprivation of liberty. Needing a real life. A free life, like you. And me now.
Can the Human Rights Committee help?
Thank you very much for your attention.
View our joint submission for the List of Issues on France: tbinternet.ohchr.org/Treaties/CCPR/Shared%20Documents/FRA/INT_CCPR_ICO_FRA_17183_E.doc