Imagine being taken to the hospital by a family member against your will, put in a solitary cell and forced to sleep, eat and defecate in the same 4x4 space. Imagine telling your nurses that you don’t want to take a certain medication because it causes serious side effects, yet you are held down and forced to take it, or later find out that it was hidden in your food.
For many people with mental disabilities around the world, this is a familiar scenario. Harriet (not her real name), a 25-year old woman in Ghana, was pregnant when she spent six months at Accra Psychiatric Hospital. Conditions were terrible -- overcrowding, poor hygiene, inadequate shelter. Many patients slept on cold, hard concrete floors with no mattress or bedding, and during the day, patients crowded in the few spots in the shade, trying to avoid being under the baking sun.
But Harriet’s ordeal didn’t stop there. Like other patients, she was threatened with physical abuse when she complained about painful medical treatments, and at one point was put in a dirty, dark seclusion room for 12 hours.
Michael, a 38-year old man with schizophrenia, faced similar abuse at another public hospital in Ghana. “We are beaten by the security men and the male nurses,” he said. “They beat me when I tried to escape from the ward.”
In all three public psychiatric hospitals in Ghana, patients can be held in solitary confinement for up to three days, sometimes for refusing to take medication, and face medical treatment without their consent, including electroconvulsive therapy without anesthesia. Who wouldn’t try to escape conditions like these?
Harriet and Michael spoke to Human Rights Watch for a recent report about abuses against people with mental disabilities in Ghana. Sadly, their experiences are not unique -- neither in Ghana nor around the world. In 2011 and 2012, reports of mistreatment of people with disabilities emerged from adult homes and institutions in the US and the UK, including food deprivation, beatings, and the use of restraints. Some European countries, such as the Czech Republic and Slovakia,continue to use restraints in psychiatric institutions including cage beds (beds with cages on top that confine a person to the bed) despite calls by UN bodies to prohibit such measures.
In his new report, the UN Special Rapporteur on Torture Juan Mendez, the UN’s leading expert on torture, has drawn attention to severe abuses, such as neglect, mental and physical abuse and sexual violence, against people with mental or intellectual disabilities in health-care settings. Prolonged seclusion and restraint can also constitute torture when used against people with disabilities, in clear violation of several international treaties.
Involuntary medication and hospitalization is often justified as being medical necessity – or in the “best interests” of patients who are perceived to lack capacity to make decisions. But forcing people to endure coercive treatment against their will violates their fundamental rights, including the basic right to dignity. We all react with shock and dismay when we hear stories about neglect and mistreatment in institutions, but too often this suffering is hidden from the public eye.
The UN Convention on the Rights of People with Disabilities (CRPD), which is now binding in more than 125 countries, recognizes that people with disabilities should be free from torture and have the right to make their own decisions. But action, not just words, is needed to protect people with disabilities from abuse in health-care settings.
Governments have an obligation to prevent this torture and ill-treatment, even when medical or special care is outsourced to private institutions. This can be accomplished with routine monitoring of the conditions in institutions, adopting minimum standards for treatment and care that are in line with current international law, and setting up community-based care where people with disabilities maintain their autonomy and independence. Restraints, solitary confinement, and coercive medical intervention should be banned immediately. Governments should support people with disabilities make their own decisions, and not strip them of their rights in the name of “treatment” or “best interests.”
In addressing these abuses, governments should also engage with people with disabilities since they are best placed to help solve the problem. Brazil, for example, got people with mental disabilities and their families involved in making policy following outrage about human rights violations in psychiatric institutions. Their involvement was key in reforming mental health care. Institutionalization and the exclusion of people with mental disabilities have been replaced in Brazil with community care and social integration.
Without targeted government efforts to ensure that human rights abuses in health-care settings stop, people like Harriet and Michael will remain marginalized and continue to suffer, instead of receiving the support and treatment they need and deserve.