THE CONVENTION ON THE RIGHTS
OF PERSONS WITH DISABILITIES
The Right to Life and
Protection in Situations of Risk
Convention on the Rights of Persons with Disabilities
Article 10, Right to life
States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.
Article 11, Situations of risk and humanitarian emergencies
States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.
The information contained in this chapter will enable participants to work towards the following objectives:
• Define the right to life.
• Define the right to protection in situations of risk and humanitarian emergencies.
• Understand the interrelationship between the right to life and protection in situations of risk and other human rights.
• Identify ways in which the right to life of persons with disabilities and protection in situations of risk have been promoted or denied.
• Describe the provisions regarding the right to life and protection in situations of risk and humanitarian emergencies in the Convention on the Rights of Persons with Disabilities (CRPD).
GETTING STARTED: THINKING ABOUT THE RIGHT TO LIFE AND PROTECTION IN SITUATIONS OF RISK
Disability is profoundly linked to the right to life. Persons with disabilities are frequently denied their right to life, as well as their right to protection in situations of risk in many contexts, such as natural disaster, armed conflict, and other humanitarian emergencies.
Harmful cultural practices may directly violate the right to life of persons with disabilities. Where resources are limited, preferential treatment of boys in the provision of food and medical attention directly impacts girls with disabilities and their right to life. In some cultures and societies, women and girls with disabilities are, like other women, subjected to practices such as widow burning and dowry killings. The practice of female genital mutilation often results in death from haemorrhaging and can create life-threatening conditions later for women during childbirth.
Other practices likewise implicate the right to life of persons with disabilities. The practice of euthanasia in many countries takes the form of withholding life-saving treatment to a newborn child with a disability. Health care providers frequently underestimate the quality of life enjoyed by persons with disabilities. Consequently, persons with disabilities are sometimes not given life saving interventions that would otherwise be provided to patients. Disability rights organizations have exposed cases where adults or children with disabilities have died at the hands of medical personnel who unilaterally decided that their life was “not worth living.” These cases have included the imposition of a “do not resuscitate order” (DNR order) on the medical chart of patients with non-life threatening health care conditions. A DNR order is intended to prevent attempts at Cardiopulmonary Resuscitation (CPR) if a patient goes into cardiac or respiratory arrest.
Disability advocates have invoked the right to life in order to oppose physician-assisted suicide. Other practices of concern include disability-selective screening directed not at treatment but toward termination on the basis of disability. In developing countries, the mortality rate of children with disabilities is frequently disproportionately high because such children may not receive adequate health care, including immunization from childhood diseases.
The enjoyment of the right to life by persons with disabilities is inextricably linked to the enjoyment of other human rights. For example, if a person with a disability has no access to health care or rehabilitation services, their right to life may well come under threat. Subjecting persons with disabilities to dangerous working environments or to conditions that amount to forced labour is likewise potentially life threatening.
Access to information is another precondition to the enjoyment of human rights and, in some instances, is directly related to the enjoyment of the right to life. Thus, the failure of officials to provide important information in accessible formats (for example, HIV/AIDS prevention programmes or emergency evacuation procedures in times of natural disaster) may infringe upon the right to life of persons with disabilities. These illustrations demonstrate that human rights are indivisible, interdependent, and interrelated. What is clear is that without respect for the right to life, all other human rights are without meaning.
Barriers to Enjoyment of the Right to Life
· Negative attitudes in society that life with a disability is “not worth living”.
· Life-threatening conditions in institutions and orphanages.
· Harmful cultural practices such as female genital mutilation, dowry killing, and widow burning.
· Selective abortion based on disability.
· Infanticide and neglect of newborn infants with disabilities.
· Imposition of “do not resuscitate” (DNR) orders.
· Withholding of life-sustaining treatment for persons with disabilities in hospital settings.
· Sexual and domestic violence, particularly against women and girls with disabilities.
· Failure to be inclusive of persons with disabilities in disaster management, programmes for refugees and internally displaced persons, and other humanitarian programmes.
· Lack of access to adequate food, clean water, shelter, and other basic survival needs.
WHAT DOES HUMAN RIGHTS LAW SAY ABOUT THE RIGHT TO LIFE AND PROTECTION IN SITUATIONS OF RISK?
The right to life is the most fundamental of all human rights. Article 3 of the Universal Declaration of Human Rights (UDHR) provides that “[e]veryone has the right to life, liberty and security of person.” Article 6(1) of the International Covenant on Civil and Political Rights (ICCPR) states:
Every human being has the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life.
The right to life is not absolute, however. For example, the death of a combatant during a lawful act of war under international humanitarian law does not violate the right to life. In certain limited circumstances, such as self-defence, a law enforcement official may take the life of someone. Some jurisdictions permit capital punishment for serious crimes, a practice that Article 6 of the ICCPR acknowledges but also narrowly limits in those countries where the practice exists.
When a state recognizes the right to life in international law, it assumes various duties. The UN Charter prohibits the threat or use of force by any State against another State, except in exercise of the inherent right of self-defence. The Human Rights Committee, which monitors the ICCPR, has stated in General Comment 6 on the right to life that “States have the supreme duty to prevent wars, acts of genocide and other acts of mass violence causing arbitrary loss of life.” The State’s obligations include making every effort to avert the danger of war and to strengthen international peace and security. These obligations constitute the most important condition for the safeguarding of the right to life. States may not limit the right to life during times of war or emergency and are required to provide protection and safety to persons who are non-combatants as a matter of international humanitarian law.
States must also refrain from action that may intentionally take away life. The Human Rights Committee has condemned the practice of infanticide for infants with disabilities and noted that it “is gravely concerned at reports that new-born handicapped infants have had their lives ended by medical personnel.” The Committee on the Rights of the Child urged States to:
… review and amend laws affecting disabled children which are not compatible with … the Convention, for example legislation which denies disabled children an equal right to life, survival and development (including, in those countries which allow abortion, discriminatory laws on abortion affecting disabled children, and discriminatory access to health services…).”
The Human Rights Committee has stressed that the protection of the right to life requires that States adopt positive measures designed to protect life. These may include measures to increase life expectancy, decrease infant and child mortality, combat disease, and provide rehabilitation, adequate food, clean water, shelter, and other basic survival needs. Rule 2.3 of the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities requires that “States should ensure that persons with disabilities, particularly infants and children, are provided with the same level of medical care within the same system as other members of society.”
The CRPD reflects these concerns about the right to life of persons with disabilities. In Article 10, Right to life, the CRPD recognizes the inherent right to life for persons with disabilities and, in addition, requires States to “take all necessary measures” to ensure the enjoyment of that right by persons with disabilities, on an equal basis with others. CRPD Article 11, Situations of risk and humanitarian emergencies, requires positive measures of protection and safety for persons with disabilities affected by situations of humanitarian emergencies and risk. This provision was regarded as essential by the drafters of the CRPD to ensure that the specific needs of persons with disabilities are taken into account when providing assistance to persons affected or displaced by natural disaster, armed conflict, or other emergency. Article 11 is closely connected to Article 10 insofar as natural disaster, war, and other acts of mass violence continue to take the lives of thousands of innocent human beings every year.
The CRPD Committee on State Reporting on Articles 10 & 11
The CRPD Committee issues Reporting Guidelines, which instruct States that have ratified the CRPD on how to inform the Committee of their progress in implementing the treaty. Regarding the right to life, the CRPD Committee asks States Parties to report:
· Whether the legislation recognizes and protects the right to life and survival of persons with disabilities on an equal basis with others.
· Whether persons with disabilities are being subject to arbitrary deprivation of life.
· Measures taken to ensure their protection and safety, including measures taken to include persons with disabilities in national emergency protocols.
· Measures taken to ensure that humanitarian aid relief is distributed in an accessible way to persons with disabilities caught in a humanitarian emergency, in particular measures taken to ensure that sanitation and latrine facilities in emergency shelters and refugee camps are available and accessible for persons with disabilities.
Source: Committee on the Rights of Persons with Disabilities, “Reporting Guidelines of the Committee on the Rights of Persons with Disabilities,” (2009): http://www.ohchr.org/Documents/HRBodies/CRPD/CRPD-C-2-3.pdf
The Duty to Respect, Protect, and Fulfil Obligations Relating to the Right to Life and Protection in Situations of Risk
Taken as a whole, States’ obligations with regard to the right to life of persons with disabilities and their right to protection and safety in situations of risk and humanitarian emergency include:
1. Obligation to respect: States must refrain from engaging in any act, custom, or practice that creates barriers to enjoyment of the right to life and protection in situations of risk.
Example: The State does not restrict access to medical care for persons with disabilities.
Example: The State does not restrict access to food aid for persons with disabilities, but must ensure access on the same basis as others.
2. Obligation to protect: States must ensure that non-State or private actors do not violate these rights.
Example: The State takes measures to ensure careful monitoring of all settings where persons with disabilities live or receive services, whether publicly or privately operated, and takes measures to move persons with disabilities out of institutions and into community living situations with appropriate supports.
Example: The State includes persons with disabilities in disaster preparedness planning and provides services that are inclusive of persons with disabilities, such as appropriate evacuation procedures.
3. Obligation to fulfil: States must take proactive steps to ensure enjoyment of the right to life and protection in situations of risk by persons with disabilities.
Example: The State undertakes information campaigns that seek to dispel the myth that persons with disabilities have lives “not worth living.”
Example: The State initiates training programmes for disaster preparedness and relief workers that include the care of persons with disabilities in the general population.
In sum, States have the obligation to respect, protect, and fulfil the right to life of persons with disabilities and their right to protection and safety in situations of risk and humanitarian emergency.
THREATS TO LIFE IN INSTITUTIONS
Persons with disabilities living in institutions are at high risk for human rights abuse, including infringements on the right to life. Placing persons in large-scale institutions, instead of providing for living arrangements within the community, is isolating and makes close monitoring of conditions nearly impossible. Disability Rights International (DRI) has documented egregious violations of the right to life for children and adults with diverse disabilities detained in dismal and dangerous institutions. DRI’s human rights reports document at length highly unhygienic conditions of detention; excessive use of physical restraints; lack of adequate food, water, clothing, and medical care; and other dangerous and life-threatening conditions, such as freezing conditions where patients have froze to death. DRI and many other disability rights organizations advocate for the closure of such facilities and call for enjoyment of the right to live independently and in the community, with appropriate supports. (See also Part 2, Chapter 6, Freedom from Torture and Other Forms of Abuse).
Documenting and Reporting on Human Rights Abuses in Institutional Settings
Findings by Disability Rights International (DRI) on conditions of institutionalized children
· Mexico: DRI documented the near absence of any official oversight of children in private institutions, and reports that children have “disappeared” from public record. Evidence further that children with disabilities have been “trafficked” into forced labour or sex slavery.
· United States: DRI reported that children with autism and other mental disabilities living at a residential school in Massachusetts are administered given electric shocks as a form of “behaviour modification” or bogus “aversive” therapy.
· Paraguay & Uruguay: DRI tracked children with disabilities experiencing inhuman and degrading treatment, including being locked up in cages within institutions.
· Turkey: DRI documented children as young as 9 years old being given electro-shock treatments without anaesthesia until exposed by human rights reporting efforts.
· Romania: DRI found that teenagers with both mental and physical disabilities were isolated in an adult psychiatric institution and were in near-death condition on account of from intentional starvation. Some of the teens weighed less than 30 pounds.
· Russia: DRI documented thousands of neglected infants and babies subjected to isolation in so-called “lying down rooms,” where row after row of babies with disabilities are confined to live and die in their filthy cribs.
Worldwide Campaign to End the Institutionalization of Children
DRI is currently calling for an end to institutionalization of children based on its years of documenting and reporting on human rights abuses inside institutional settings around the world. DRI is currently developing a comprehensive report that shows the unfortunate role that international funders play in perpetuating the segregation of children with disabilities and explains the link between institutionalization – particularly in developing countries – and the misuse of foreign assistance funding to build new institutions or rebuild old crumbling facilities, instead of providing assistance and access to services for families who want to keep their children at home and in the community.
For more on the extensive documenting and reporting undertaken by DRI in this context and its campaign, see http://www.disabilityrightsintl.org/learn-about-the-worldwide-campaign-to-end-the-institutionalization-of-children/
EUGENICS AND NAZI-ERA MASS KILLING
While persons with disabilities throughout the ages and in most societies have faced stigma and discrimination on account of their difference, the rise of the eugenics movement in America and Europe during the late nineteenth century led to the specific targeting of persons with disabilities for widespread abuses, and ultimately, mass murder in Nazi Germany. Eugenicists warned that the birth rate of the “fit” and “talented” members of society had declined to an alarming extent, while less desirable members of society continued to multiply. In the most egregious cases, persons with disabilities were singled out for mass murder, as in the Nazi genocidal programmes targeting persons with disabilities living in institutions.
Children with disabilities were targeted for systematic killing under a separate Nazi program that preceded the mass murder of adults with disabilities. A decree mandated the reporting of all newborns and infants under three years of age with suspected “hereditary diseases” including, among others, Down Syndrome, deafness, blindness, paralysis, and congenital physical disabilities. A variety of particularly horrific killing methods were used, including massive lethal injection to the heart, poison administrated over an extended period of time, gassing with cyanide or chemical warfare agents, starvation, and exposure. The latter two methods were sometimes selected so that doctors could attribute the death to “natural causes” or routine illness such as pneumonia. Estimates suggest that at least 5,000 children with disabilities were killed under the euthanasia program during World War II.
During the 1994 genocide in Rwanda, persons with disabilities were killed at hospitals and residential institutions. More recently, human rights reports have exposed eugenics-like programmes in North Korea, where persons with disabilities are sent to dismal internment camps and are categorized and separated according to their disability. For example, camps exist for persons of especially short stature, who are rounded up, relocated, and prohibited from marrying or having children. Persons with mental disabilities are detained in camps known as “Ward 49,” where they endure particularly harsh and life threatening conditions.
Eugenics: Operation T4
In 1933, the German Ministry of Justice proposed legislation authorizing physicians to grant “mercy deaths” in order to “end the tortures of incurable patients, upon request, in the interests of true humanity.” The legislation was never formally enacted, yet its objectives – not euthanasia but the mass killing of persons with disabilities – were implemented in the form of a programme known as Operation T-4.
Under the top secret T-4 programme, patients in all government- and church-run sanatoria or nursing homes with a wide range of physical, sensory, and mental disabilities perceived to be hereditary in nature were targeted for extermination. Included were those with blindness, deafness, epilepsy, intellectual disabilities, autism, depression, bipolar disorder, mobility impairments, or congenital disabilities. The pool of victims later expanded to include sick residents of poorhouses and old age homes.
The T-4 programme served as a testing ground for the Nazi killing machine. At the outset, T-4 victims were killed by lethal injection, but they soon became the first victims of an experimental gas chamber at Brandenberg Prison. In a test run in January 1940, patients diagnosed with mental disabilities were gassed to death in an experiment intended to show the effectiveness of poison gas over other methods of killing. Nazi techniques of outfitting killing chambers with false showerheads and bathroom tiling developed under the T-4 programme and were later used extensively in the notorious death camps like Auschwitz and Birkenau.
Source: Janet E. Lord, “The Application of the Laws Concerning Genocide and Crimes against Humanity to People with Disabilities” in Encyclopedia of Genocide and Crimes against Humanity (Dinah L. Shelton, ed., 2004).
SITUATIONS OF RISK: NATURAL DISASTER AND ARMED CONFLICT
Recent humanitarian emergencies – both natural disasters, such as the Asian Tsunami of 2007, and various crises resulting from armed conflict, such as Afghanistan, Iraq, and Northern Uganda – disclose the failure of large humanitarian operations to respond appropriately to the needs of beneficiaries with disabilities. Humanitarian organizations are all too often unprepared and lacking the technical expertise to ensure even the most basic needs of persons with disabilities, including adequate shelter, food, water, and health care services.
Hurricanes Katrina and Rita in the United States disclosed the failure of US federal-level disaster preparedness for meeting the needs of persons with disabilities. Persons with disabilities were left trapped in their homes for days and provided with completely inadequate medical care in shelters, and many died as a result. Later, persons with disabilities were often unable to access assistance programmes because of numerous barriers, including, for example, the inaccessibility of shelters provided to survivors for persons who use wheelchairs.
Armed conflict of any kind represents a major threat to human life and security. Conflict is both a source of disabling conditions and can also aggravate or create secondary disabilities for persons with disabilities. There are many adverse effects of conflict on persons with disabilities, including the break-up of support networks of family and community; displacement or abandonment; and destruction of health, rehabilitation, and transportation infrastructure. The devastating impact of armed conflict on the mental and psychosocial well-being of the affected population is also a major risk factor.
Although many international documents recognize that persons with disabilities are a particularly at-risk population in times of humanitarian crisis, few specific policies and practices have resulted in inclusive humanitarian action. In many instances, international humanitarian assistance organizations will claim to be operating in accordance with human rights and protection-oriented principles. It remains the case, however that few of these groups have disability-specific policies, and staff members are ill-equipped to accommodate persons with disabilities. Advocacy by disabled people’s organizations (DPOs) is an essential tool in ensuring that humanitarian assistance programmes take into account the specific needs of persons with disabilities in their preparation for and response to humanitarian crises. Persons with disabilities and their representative organizations must participate in all programmes designed to reach affected populations in times of crisis.
Checklist for Community Disaster Preparedness
For Persons with Disabilities
· Do get involved in public disaster planning in your community.
· Don’t wait until a disaster, and persons with disabilities are left behind.
· Do get prepared at home and then expand preparedness to public settings.
· Don’t assume evacuation plans exist for persons with disabilities.
· Do form an “Accessibility Committee” at work and other public places.
· Don’t assume you will be evacuated with everyone else.
· Do explore evacuation options with emergency managers and others.
· Don’t overlook alternatives, such as evacuation chairs.
· Do share the plan with all those in the building/area and then run practice evacuation drills.
· Don’t wait until the disaster to raise awareness on disability issues.
· Do learn about disasters and share that knowledge.
· Don’t forget to check shelter accessibility and service animal provisions.
· Do talk to local emergency managers about disability rights.
· Don’t wait to train and educate others about the plan procedures.
· Do initiate talking to managers, responders and Red Cross/Red Crescent.
· Don’t forget to develop a network of supporters who can assist you.
· Do remember to participate so that “Nobody is Left Behind”!
Source: University of Kansas, Research and Training Center on Independent Living, “Nobody Left Behind: Disaster Preparedness for Persons with Mobility Impairments, Disaster Do’s and Don’ts Checklists”: http://www.nobodyleftbehind2.org
DISABILITY ADVOCACY ON THE RIGHT TO LIFE
Disability advocacy has, in recent years, begun to address how a growing “right to die” or “assisted suicide” movement may impact the right to life of persons with disabilities. These movements claim to provide persons with significant and/or terminal illnesses or disabilities the right to choose death according to their own timing and place. The major question of concern for disability advocates is whether death in such cases is really a free and informed choice or merely a response to external pressure and negative messages about the “burden” of disability or assumptions about quality of life. Some disability organizations, such as the US-based group Not Dead Yet are confronting the “right to die” movement and challenging the movement’s positions on the basis that it is disregarding and essentially devaluing the lives of persons with disabilities. Such organizations oppose attempts to legalize physician-assisted suicide and also work to address other medical and bioethics issues. Other disability advocates are addressing the right to life in other contexts, such as working to ensure that persons with disabilities have access to quality health care, including immunization programmes and health education. Still others are working on ensuring that emergency preparedness plans address the needs of persons with disabilities in a variety of situations of risk. In these and many other contexts, persons with disabilities must work in cooperation with other stakeholders to advocate on right-to-life issues.
USEFUL RESOURCES ON THE RIGHT TO LIFE AND PROTECTION IN SITUATIONS OF RISK:
· Disability Rights International: http://www.mdri.org.
o Website of leading disability rights organization (formerly named Mental Disability Rights International) focused on documenting and reporting abuses, particularly in institutional settings.
· International Disability Rights Monitor, Disability and Tsunami Relief Efforts in India, Indonesia and Thailand, Center for International Rehabilitation (September 2005): http://www.handicap-international.fr/bibliographie-handicap/7Donnees/RapportEtude/IDRM_Tsunami.pdf.
o Assessment of Asian tsunami relief efforts and their inclusion of persons with disabilities.
· Janet E. Lord & Michael A. Stein, “Ensuring Respect for the Rights of People with Disabilities,” in The Human Impact of Natural Disasters: Issues for the Inquiry-Based Classroom (Valerie Ooka Pang, William R. Fernekes & Jack L. Nelson eds. 2010).
o Overview of disability inclusion barriers in natural disaster planning and response and classroom exercise.
· Mental Disability Advocacy Center: http://www.mdac.info
o Website for leading European organization addressing the rights of persons with mental disabilities through documentation, reporting, and strategic litigation.
· M.H. Fox et al., “Final Report of the Nobody Left Behind: Preparedness for Persons with Mobility Impairments Research Project,” Research and Training Center on Independent Living University of Kansas (2007): http://www.nobodyleftbehind2.org/findings/Final%20Report%20NLB%20July%202007.pdf
o Detailed study of disaster planning and response following Hurricanes Rita and Katrina in the US.
· Not Dead Yet: http://www.notdeadyet.org
o Website for disability rights organization focused on issues surrounding valuing the lives of persons with disabilities and advocating against practices like physician-assisted suicide.
· UN Human Rights Committee, General Comment No. 6, the Right to Life (Article 6), 16th Session (1982):
o Commentary by the treaty body that monitors the ICCPR on the interpretation of Article 6 on the right to life.
· US Department of Justice, An ADA Guide for Local Governments: Making Community Emergency Preparedness and Response Programmes Accessible to People with Disabilities: http://www.ada.gov/publicat.htm#Anchor-Emergency
o Helpful online resource providing guidance on accommodating persons with disabilities in disaster planning and response.
 See Concluding Observations of the Human Rights Committee for The Netherlands, UN Doc. CCPR/CO/72/NET (2001): http://www1.umn.edu/humanrts/hrcommittee/netherlands2001.html
 See Committee on the Right of the Child, “General Day of Discussion, Recommendations,” CRC/C/66, Annex V, 16th Session (6 October 1997): http://www.ohchr.org/EN/HRBodies/CRC/Documents/Recommandations/disabled.pdf
 For the webpage of the US-based organization, Disability Rights International, see www.dri.org
 United Nations Department of Public Information, “North Korea Puts Disabled in Camps” (6 November 2006): http://www.dpi.org/lang-en/resources/details.php?page=753