David Stolper has been a so-called psychiatric survivor for the last 20 years. He is “officially unemployed”, as he puts it, but spends most of his time working and advocating for the human rights of persons with psychosocial disabilities. “It’s not an ego-trip thing here, but I think I am quite unique. I don’t know about anyone else who have been institutionalized in private and state systems in the UK, and also in South Africa”, he tells me. He says that his experiences from psychiatric institutions have made him a stronger person, and put him in a position where he can help other people. He is certain that the new convention will have a significant impact on the ground for persons with psychosocial disabilities.

- I think it gives us a legal framework and something on paper that will be binding that is a dramatic shift from what we have had before. There has always seemed to be some kind of barbaric tool to control us. The law has been an instrument of our oppression. The convention says that it is time that the government and people around us drop this notion that we cannot think for ourselves. Article 12 in the convention talks about legal capacity, and this is a key feature for us. We have the right to choose and have self-determination, or at least support the decision-making around our treatment and lives.

We meet on a sunny but chilly day in April in his hometown, Cape Town. David Stolper walks in, just as I have arrived at the coffee shop where we have decided to meet, and walks straight up to me with a big smile. He says that he is excited about the interview and shows me a file full of awareness raising materials. He is always prepared to share information from the organisations that he supports and educate people about the issues that he fights for.

David Stolper says that for other disability groups, the main concerns around the new Convention are with accessibility issues. For people in psychiatry the most urgent issues are forced treatment, self determination, coercion and legal capacity. Researchers agree. Dr Martha Laclave is an American anthropologist who teaches disability and social policy. She says that while each article in the Convention on the rights of persons with disabilities has importance to people with mental disabilities, some are particularly ground braking in that they are now made legally binding. She highlights the same issues as David Stoper does when she mentions article 12: Equal recognition before the law, article 13: Access to justice, article 19: living independently and being included in the community, article 15: Freedom from torture or cruel, inhuman or degrading treatment or punishment and article 16: Freedom from exploitation, violence and abuse.

Under the general obligations in article four of the Convention, States Parties undertake to take all appropriate measures to eliminate discrimination on the basis of disability. Article eight spells out that States Parties undertake to adopt “immediate, effective and appropriate measures” to raise awareness and foster respect for the rights of persons with disabilities. It also says that they undertake to combat stereotypes and prejudices. When I ask David Stolper how he thinks that the government can counter negative attitudes, he puts his coffee down and responds with determination.

- It is such an important question that you bring up now, and one that I have grappled with myself for many years. There has to be a shift towards respect for human rights. In everything from medication, forced treatment, length of stays in hospitals to access to proper legal support. As I understand it, we don’t have in this country any mental health legal specialist or law firms specializing in these issues. That is something that can be addressed by the government, he says.

“As the concept of legal capacity affects many areas of the law, changing the body of law to comply with the Convention will be a complex undertaking”, Tina Minkowitz, World Network of Users and Survivors of Psychiatry (WNUSP) co-chair, says in the organization’s newsletter. She also says that “at the same time, governments will have to develop programs to ensure that people who want support in making decisions will have access to good quality support that meets their individual needs and respects their choices”. The Convention recognizes that there are times when people may need help, but that it can never be against a person’s will. David Stolper feels that this is an area where people like him are needed to educate decision makers. 

- And we also need public education. There need to be some curriculum in schools that discusses disability and respect for human rights. Government ministers must also change their attitudes. I know that in some meetings ministers of government have expressed themselves in derogatory ways about people with mental health problems, David Stolper adds.

I wonder what he thinks that individual citizens should do to fight  negative stereotypes. He tells me that people on the street are usually very interested when he speaks about these issues. They want to understand what it is like to have a psychosocial disability and where they can learn more. This is encouraging, he says, because “the more people understand each other, the less discrimination we get”.

- But politics is a whole other ball game. I don’t think that we, the so-called marginalized, are vote-winners, he says with a smile.

South Africa’s Constitution came into effect in 1997, after being signed into law by President Nelson Mandela. A recent press release, circulated by the World Network of Users and Survivors of Psychiatry, states that “Unfortunately, key elements [of the Constitution] have not been translated into practice. Psychiatric patients continue to be denied the most basic of human rights – the right to be regarded as persons and to exercise legal capacity”.

David Stolper feels that the government is focusing on other areas, and that disability often gets sidelined. He is supported in this view by researchers such as Dr Martha Laclave. She did her dissertation on disability and identity in South Africa from a human rights perspective. “Many people I have interviewed agree that race needed to be addressed and resources devoted to that area. Gender, it seems, came next. Then youth. Then, if there was anything left, it could go to disability”, she says.

- The whole world looks at our constitution in South Africa and see it as the most progressive one for the rights of all people. And the thing is that the constitution is not being adhered to when it comes to disabled persons, and this is something that must change, David Stolper says emphatically.

Dr William Rowland writes in the online publication Disability World that the South African disability movement has many reasons to be proud of their accomplishments. He lists the Constitution, the national disability strategy, The Office of the Status of Disabled People in the Presidency and elected parliamentarians with disabilities as examples. But, he says, “at times the pace has been agonizingly slow and policy does not always translate into practice”. “Compared with American and British legislation, enforcement mechanisms in South Africa are weak”.

- If we can get this right in South Africa, many others would follow suit. I think that our mental health act must be repealed as soon as possible, David Stolper continues.

- What is wrong with it? I ask.

- The psychiatric systems are much the same all over the world, I know from personal experience that the English system is not much better. But certainly in South Africa, mental health does nothing to foster care. For example, people are still being forced to do factory style labour for 25 rand per week, for 20 hours of work. To me this is not meaningful integration into society. It does nothing to get us into the official job market and for growing as a person. There are many issues such as forced coercion and cruel, degrading treatment which are covered in the mental health care act, but only in vague statements with double meanings, he says.

WNUSP co-chair Moosa Salie and his colleague and fellow South African David Robert Lewis say that “South African Health Care legislation continues to operate on the assumption that mental health users have no capacity to act, and may therefore be incarcerated against their will, suffer preventive or pre-emptive detention for their own good, or the good of society, and be locked up without access to legal assistance for up to 45 days at a time.” And this, they point out, is despite the fact that “Article 12 of South Africa’s Bill of Rights expressly forbids detention without trial.” They argue that South Africa’s mental health legislation continues “the old practice of coercive psychiatry, alongside forced admissions to mental hospitals, the use of torture as a form of medical treatment [...] and the denial of legal capacity”. David Stolper agrees.

- They see us as some kind of guinea pigs. It seems to me as if we are labeled as some sort of misfits in society. Mental Health staff should be made accountable for their actions – I have seen the most shocking things in institutions, he tells me.

- In South Africa they are too focused on service delivery, and the human rights aspect when it comes to people with disabilities has been forgotten, in practice. If you look at the psychiatric hospital here in Cape Town, the facilities are crumbling. The buildings have been there, I think, since 1891. They and our central government are now spending something like half a billion rand on updating the facilities. - And I am thinking, hang on a minute! The idea behind the convention is that we want to get rid of centralized institutions within the next 20 or 30 years, so why is our government spending all of this money on an old-fashioned process that should be dismantled? I find it very disturbing that they are still building on this paternalistic ideology of what they think is right for us. If you ask me, I think the money should be spent on training, on community based care, on setting up self-help groups and on other tools for integration and meaningful participation in society, David Stolper says and looks determined.

In the negotiation process behind the convention, civil society groups were instrumental. David Stolper thinks that they must continue to play an important role in the ratification process that lies ahead.

- In most countries, legislation needs to be changed before the Convention can be ratified. It is up to the people to lobby our governments. And we need to do it now, he says.

- Otherwise we will loose momentum and it may never be ratified, he warns.

Having said this, David Stolper puts the information materials back into his file, finishes his coffee and gets ready for his next advocacy opportunity.

_______________________________________________________________

About the Convention

‘The Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ was adopted on 13 December 2006 during the sixty-first session of the United Nations General Assembly by resolution A/RES/61/106.

The Convention was opened for signature on March 30 this year. Eighty-one Member States and the European Community signed it on that day.

You can read the full text of the convention on the Internet: http://www.un.org/disabilities/convention/conventionfull.shtml

For anyone, like David Stolper, who wants to be involved in the ratification and implementation process of the Convention, we also recommend the Ratification Toolkit and the Implementation Toolkit, both developed by Disabled Peoples International (DPI). You will find them here:
http://www.icrpd.net/ratification/en/index.htm
http://www.icrpd.net/implementation/en/index.htm

_________________________________________________________________________

This article was published in Human Rights Africa number 2, 2007.