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Reflections on institutionalisation 24 October 2008, Budapest, Hungary
I'm Oliver Lewis, the Executive Director of the Mental Disability Advocacy Center, and I'd like to welcome you to the first in a series of occasional 'reflections'. These will be longer and more informal pieces than MDAC's information bulletins or press releases. My aim is to reflect on some of the issues which MDAC is working with. My hope is that you will email your own reflections, comments and experiences from which we can all learn, and that in doing so you will get involved in MDAC's advocacy.
This first piece focuses on institutionalisation of persons with disabilities. It has been prompted by the views of Thomas Hammarberg, the Commissioner for Human Rights of the Council of Europe. This week he issued a Viewpoint entitled "Human Rights and Disability: Equal Rights for All". He also issued an Issue Paper which draws on much of MDAC's work. As you may know, The Commissioner is the chief human rights spokesperson of the Council of Europe a forty seven Member State intergovernmental organisation entirely separate from the European Union, and an organisation to which MDAC has participatory status. The Commissioner heads an office in Strasbourg of around twenty staff members who work on a huge range of human rights topics. Mr Hammarberg has been a vocal advocate for the rights of disabilities since he became Commissioner in April 2006.
In his Viewpoint, Commissioner Hammarberg emphasises that persons with disabilities are citizens with equal rights and with an active role to play in our societies. For too long, he says, policies concerning such persons have been focused on institutional care, medical rehabilitation and welfare benefits. The concerns of Commissioner Hammarberg mirror those of MDAC, which, since its inception, has been directly engaged in challenging these discriminatory policies, suggesting alternatives and building the capacity of individuals and groups to take action. As a reader of MDAC's information bulletins you'll already be familiar with many of these issues which include arbitrary detention, guardianship, forced psychiatric medication, denial of inclusive education, and abuse, neglect and death.
Mr. Hammarberg says that governments are still failing to ensure the rights of persons with disabilities are fulfilled. They are, quite simply, not moving beyond a loud rhetoric of rights. He sets a challenge: we must reflect and debate. But we must do still more: we must act.
I want to focus on one issue which the Commissioner raises in his Viewpoint, and that is institutionalisation, a word which in my experience is more difficult to pronounce than it is to understand. The sociologist Erving Goffman coined the phrase "total institutions" in his 1961 book Asylums. He said that some of the common characteristics of total institutions include first, that the inmate's life is conducted in the same place and under the same single authority or regime. Second, that inmates proceed through the daily routing with a group of others. They are all treated the same and the same is expected of them. Third, that there is a strict daily routine imposed by the staff, and there is a strict us-and-them division between the staff and inmates. And fourth, that there is a single overall rational plan purportedly designed to fulfil the official aims of the institution. Many types of facility share these characteristics: monasteries, boarding schools, psychiatric hospitals, prisons and social care institutions.
Why do institutions exist? I'm referring here to the several million children and adults with actual or perceived
disabilities who are forced to spend much of their lives in institutions. I exclude acute psychiatric beds or institutions for people who have committed criminal offences.
To the question "Why do institutions exist?" I've heard the following answers over the years from policy-makers and service providers in several European countries. Institutions are the best form of care. Institutions are cheap and our country is poor. There's nowhere else for these people to go. There is such stigma out there in the community: thankfully we are here to take care of these people. Our residents have no skills and could not cope out there. Institutions are the only option. These people need 24 hour supervision. We will lose our jobs if this institution closes. Our country is not ready for these people to live in the community.
I struggle to find any of these answers convincing. They are based on prejudices and ignore the evidence that with appropriate support everyone can live in the community. They ignore that it is actually a person's human right to live in the community and that the State has obligations to ensure community living. And they reveal a mindset which clings onto the view that social care homes are actually social, caring or homely. If you have visited one of these institutions you will see - hear, smell, taste and touch - that they are not.
The answers are excuses for politicians to fail to take a step. They may fear that disgruntled staff who don't accept change will not vote them back into office (incidentally, the politicians need not worry about the votes of residents because many of them are legally prohibited from voting as they are under guardianship). Corruption is another reason why some politicians and directors of social care institutions resist change. You can imagine what happens when one person controls the budget of a large institution as well as the finances of possibly several hundred people and there are no financial audits or other checks and balances.
What's wrong with institutions in human rights terms? To start with, institutionalisation itself is a human rights violation: just read Article 19 of the UN Convention on the Rights of Persons with Disabilities. Institutions make other abuses likely. People are detained arbitrarily without court review. Inmates may be injected with mind and body-altering chemicals without their consent. They may have their property removed and be denied access to their own bank accounts. Access to telephones and other forms of communications may be restricted or censored. Healthcare may be denied which is available to other citizens. Staff may sexually or physically abuse or neglect inmates, and repeat these serious criminal offences with impunity. The right to challenge these human rights violations before courts may itself be denied.
How to move from rhetoric to implementation? Given the gravity of the issues, Commissioner Hammarberg implored this week that "governments take action now". What action should governments take to reverse institutionalisation? Pouring money into the restoration of institutions will make them prettier, but such spending inevitably institutionalises institutionalisation. Commissioner Hammarberg suggests governments plan their policies through the lens of human rights. He says that governments should "[d]evelop programmes to enable persons with disabilities to live in the community. Cease new admissions to social care institutions and allocate sufficient resources to provide adequate health care, rehabilitation and social services in the community instead." To ensure that human rights are monitored both the Commissioner and MDAC call on governments to ensure that there are independent inspectorates to these places of detention. The establishment of such inspectorates is an obligation under the Optional Protocol to the UN Convention against Torture.
The journey of a thousand miles towards deinstitutionalisation starts with a single step. MDAC proposes to governments that they should impose a moratorium on admissions to social care institutions. Waiting lists for institutions are sometimes several years long, so local authorities will have ample time to arrange alternative services, and governments will have enough time to plan - with full involvement of civil society and especially disabled people's organisations - a full closure of these institutions and a parallel development of a range of community-based services.
The purpose of this 'reflection' is to engage in the debate. Do you agree that a moratorium is a measurable, achievable and decisive step towards implementation? If you were a newly appointed Minister of Social Affairs, what would be your first step? Email your ideas. And please give your feedback on this 'reflection' and suggestions for future topics and formats.
You can help MDAC to encourage governments to move from rhetoric to implementation by making a secure online donation today. If you'd like to discuss regular or large gifts, leaving a gift to MDAC in your will, or other ways of donating, please call me on +361 413 2730. |
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The Mental Disability Advocacy Center (MDAC) advances the human rights of children and
adults with actual or perceived intellectual or psycho-social (mental health) disabilities.
Focusing on Europe and Central Asia, we use a combination of law and advocacy to
promote equality and social integration. MDAC has participatory status with the
Council of Europe.
MDAC's vision is for a world that values emotional, mental
and learning differences, and where people respect each other's autonomy and
dignity.
Mental Disability Advocacy Center
Rákóczi út 27/B, 1088
Budapest, Hungary
Tel: + 36 1 413 27 30, fax: +36 1 4 13 27 39
Email: mdac@mdac.info, web: www.mdac.info
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