The abuse of people with disabilities is widespread - the challenge is to find the right balance between protecting them and respecting their autonomy, writes Clarence Sundram
Fifty-seven years ago, the United Nations General Assembly adopted the Universal Declaration of Human Rights, proclaiming a common standard of human rights for everyone. Since then, the UN has adopted specific treaties protecting civil, political, economic, social and cultural rights for "everyone".
In most countries, however, people with disabilities continue to endure serious violations of their human rights, face pervasive discrimination, and find themselves marginalised economically, socially and politically. People with mental disabilities are especially disadvantaged, and have been subjected historically to some of the most systematic and egregious violations of their rights.
Human rights investigations, including those by Mental Disability Rights International, have found people with mental disabilities:
• subjected to arbitrary detention, sometimes for a lifetime, without any legal process;
• forced to work in institutions without compensation;
• chained to walls and confined in cages;
• enrolled in risky experiments without informed consent;
• physically abused and sexually exploited;
• deprived of basic health care, and dead from preventable conditions such as malnutrition and hypothermia;
• subjected to cruel, inhuman and degrading treatment including use of painful and noxious aversive therapies, unmodified electroconvulsive therapy, and misuse of restraints and seclusion for days.
Most recently, in Romania, the group found children with disabilities abandoned in maternity hospitals without names or identity papers, and therefore who had no legal existence.
People with mental disability too easily can be found incapable of exercising their legal rights and deprived of these rights entirely or have their rights transferred to guardians or other legal representatives. While many guardians act in the best interests of their wards, there are widespread and persistent reports from around the world of guardians who abuse and misuse their authority.
Guardians have disposed of property; consented to commitment to institutions and prevented discharges; consented to unmodified electroconvulsive therapy, aversive therapy and the confinement in cage-beds; limited sexual activity and consented to abortions and sterilisation; and approved participation in risky experiments, organ donations, and do-not-resuscitate orders.
Public guardians often have large caseloads and fail to consult their wards about decisions that need to be made. Many guardianship systems have weak or nonexistent processes for periodic review and an accounting of the actions of the guardian. As a result, guardians have made decisions with serious, sometimes permanent consequences, with wards having no voice in the decision or any ability to challenge it.
In response to the continuing lack of protection of the human rights of people with disabilities, the UN has begun a process of developing a convention that aims "to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities, and to promote respect for their inherent dignity".
A key issue to be deliberated at a session in August is the legal capacity of people with disabilities, and the practices that deprive them of such capacity. Several countries and organisations of people with disabilities, including the International Disability Caucus, are arguing for a re-conceptualisation of legal capacity to recognise capacity more universally and to give legal recognition to reliance on informal support networks of families and friends to assist people with disabilities in exercising their rights. These proposed changes would reduce or eliminate entirely the longstanding reliance on guardians and personal representatives in most countries.
The National Disability Authority meets in Dublin today to formulate recommendations on how the draft treaty can better protect the human rights of people with disabilities, especially for those who may need assistance in exercising their legal rights. Existing laws dealing with incapacity deprive people of the ability to exercise their legal rights, but these same laws also offer protection against exploitation.
For example, they make it a crime to have sexual relations with someone incapable of consent; they make contracts voidable if the person lacked the capacity to agree to the terms; they extend statutes of limitations for the period a person is incapable of exercising legal rights, and so on. The challenge is to find a balance which respects the core right of all to be recognised as persons before the law and to retain their decision-making autonomy while not abandoning the State's historic obligation to protect vulnerable citizens.
Clarence J Sundram is president of Mental Disability Rights International