If disability is one of the great human rights challenges of this century, then within this, psychosocial disability remains one of the most challenging and misunderstood areas of disability.
Paul Deany, DRF Program Officer
Paul Deany spoke on a panel at the 9th session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities, June 15, 2016. Here are his remarks.
As a person with bi-polar and someone who has worked in the field of psychosocial disabilities, I believe this is one of the most marginalized areas of disability. Indeed, if disability is one of the great human rights challenges of this century, then within this, psychosocial disability remains one of the most challenging and misunderstood areas of disability.
Persons with psychosocial disabilities face many forms of stigma and discrimination, as well as barriers to exercising their civil, economic, social and cultural rights. These barriers are heightened by urbanization, increasing human insecurity, poverty, natural disasters, migration, hunger and conflict.
As I will outline, further barriers are posed by discriminatory legislation and practices depriving persons with psychosocial disabilities of legal capacity and liberty, and by violence, abuse, cruel, inhuman and degrading treatment on the basis of disability.
Psychosocial disability differs in that it can be episodic, invisible and often not well identified. It may be hidden by individuals or their families out of shame, denial or the fear of being locked up and stripped of their most basic rights. In countries where persons with psychosocial disabilities are victims of repressive laws, forced incarceration, stigma and systemic abuse, this fear is very real.
None of this is entirely new. Persons with psychosocial disabilities have been marginalized, shunned and demonized throughout history. We often see psychosocial disability associated with criminality, deviance and detention. Having a psychosocial disability is still used as grounds for excluding people from entry into countries, including the US, and from other basic freedoms afforded under the disability convention.
Much of the discourse on psychosocial disabilities is also couched in medical and health terms. There is still a strong push from parts of the psychiatric community to view psychosocial disabilities as largely biomedical and health issues. Many people have expressed strong concerns about the increasing push to over-prescribe anti-psychotic drugs, mood stabilizers and other pharmaceuticals in a well-orchestrated global push to increase medication of mental health problems, which blatantly promotes an expansionist agenda of the mental health industry and not the rights of individuals.
The challenge here is that in many countries, the system is dominated by the medical model to the detriment of rights and quality of life. Building more psychiatric hospitals is seen as the main solution. Fundamental issues such as housing, support, jobs, education, voting, and political and legal rights are seldom considered. Persons with psychosocial disabilities are under the domain of psychiatry and in this domain, their rights are abused.
Of even greater concern are countries which classify psychosocial disability as a separate form of disability, governed under mental health legislation, and then use this legislation to remove many of the rights and protections guaranteed under the CRPD and instruments, such as the Convention Against Torture.
Some countries are bringing back retrograde and draconian mental health laws which strip people of their rights. This begs the question: Why is psychosocial disability dealt with by law in many countries as an entirely different form of disability? It seems we are still heavily influenced by centuries of mainly western legislation and treatment which views psychosocial disability as a separate type of disability.
In many countries where basic rights and services are sorely lacking, we have the situation where persons with psychosocial disabilities are shackled, chained and incarcerated by the state or their family, against most fundamental rights and laws – sometimes indefinitely.
This forced and brutal detention is endemic in many less developed and even some fairly well developed countries and has been documented by Human Rights Watch in a diverse range of countries.
In 2006, I met a young woman in the Philippines with Schizophrenia. As a result of her family’s fear of her condition and a lack of community treatment and support options, she had been chained to a post in their kitchen for 8 years where she ate, slept and went to the toilet. Thankfully, through a community based mental health program, she was eventually freed from this homemade prison and was living a meaningful, productive life when I saw her a year later. This story is one being repeated in many other countries.
The Disability Rights Fund has supported numerous organizations of people with psychosocial disabilities in different parts of the world to start to address some of these issues:
- In Asia, we are supporting the Indonesian Mental Health Association, a self-advocacy group which has been raising awareness nationally about the shackling of large numbers of persons with psychosocial disabilities across the country in sub-standard and inhumane institutions, and which has been fighting for equal rights, such as the right to vote.
- In the Pacific, we are supporting Psychiatric Survivors Association Fiji – the first organization led by persons with psychosocial disabilities in the region. They have been responsible for raising national attention and the voices of this group as Fiji moves towards CRPD ratification, addressing issues including high suicide rates; eviction from family housing and high levels of community stigma.
- We are supporting MindFreedom Ghana, a self-advocacy group who are working to address the situation of people with psychosocial disabilities who are chained and tortured in prayer camps. This situation was exposed by Human Rights Watch.
And there are more.
- In Africa, Users and Survivors of Psychiatry Kenya has carried out groundbreaking advocacy to review the country’s Mental Health and Legal Aid Bills to address the many ways this legislation currently discriminates persons with psychosocial disabilities.
Globally, there is the CRPD itself and its jurisprudence on Articles 12 and 14, which establish the baseline of full equality and human dignity and recognize for the first time that mental and emotional suffering or difference of individuals with psychosocial disabilities doesn’t mean other supposedly more rational individuals can assume control over our lives, our bodies or our minds.
Serious work is being done in many countries on alternatives to the medical model of mental health, and increasingly users and survivors of psychiatry are leading and collaborating in this work.
But much, much more needs to be done to bring persons with psychosocial disabilities onto the same level as the rest of society.
So what needs to happen? Here is my 5-point plan:
- The global community must act to eliminate the deprivation of legal capacity and liberty of persons with psychosocial disabilities, and the practices of forced treatment and involuntary commitment to hospitals or institutions. These obligations are not progressive; they are immediate and enforceable under CRPD Article 15, Freedom from torture or cruel, inhuman or degrading treatment or punishment.
- We must acknowledge that, under CRPD Article 12, persons with psychosocial disabilities have the right to equal recognition under the law. It should be the responsibility of UN Department of Social and Economic Affairs, as part of the CRPD Secretariat, to ensure States know their obligations under CRPD Articles 12, 14 and 15
- States should move to repeal or change mental health legislation not in line with the CRPD. States should move to have persons with psychosocial disabilities included under unified national disability laws or national health laws which uphold rather than deprive them of their rights.
- As a person with a psychosocial disability, I note that at conferences and in general, the debate on the treatment of persons with psychosocial disabilities is still led by professionals and not persons with disabilities themselves. This seems to contradict the central themes of inclusion and participation we have been hearing much about at COSP. Organizations of persons with psychosocial disabilities should be empowered, especially in less developed countries, to be lead voices and advocate for their rights. This includes the World Network of Users and Survivors of Psychiatry, who despite being the pre-eminent self-advocacy group for this issue, were not widely consulted in the lead-up to this session.
- We need to break down the ingrained stigma and discrimination against this group – in the community as a whole, in the media, in the justice system, even in the disability sector and in disability legislation and policy, to ensure that persons with psychosocial disabilities are afforded the same rights as every other human rather than having these rights be stripped away by governments, laws or professions.
If there is one thing I have learned living with bi-polar and working in this field, it is that the main constraint for persons with psychosocial disabilities is not our disability, but the many barriers societies, institutions and even States place in front of us.
So, rather than continually trying to change ourselves, we need to start changing the way that society and States deal with us.