THE CONVENTION ON THE RIGHTS
OF PERSONS WITH DISABILITIES
Privacy, Integrity, Home, and the Family
Convention on the Rights of Persons with Disabilities
Article 17, Protecting the integrity of the person
Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.
Article 22, Respect for privacy
1. No person with disabilities, regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy, family, home or correspondence or other types of communication or to unlawful attacks on his or her honour and reputation. Persons with disabilities have the right to the protection of the law against such interference or attacks.
2. States Parties shall protect the privacy of personal, health and rehabilitation information of persons with disabilities on an equal basis with others.
Article 23, Respect for home and the family
1. States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others, so as to ensure that:
(a) The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized.
(b) The rights of persons with disabilities to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education are recognized, and the means necessary to enable them to exercise these rights are provided.
(c) Persons with disabilities, including children, retain their fertility on an equal basis with others.
2. States Parties shall ensure the rights and responsibilities of persons with disabilities, with regard to guardianship, wardship, trusteeship, adoption of children or similar institutions, where these concepts exist in national legislation; in all cases the best interests of the child shall be paramount. States Parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities.
3. States Parties shall ensure that children with disabilities have equal rights with respect to family life. With a view to realizing these rights, and to prevent concealment, abandonment, neglect and segregation of children with disabilities, States Parties shall undertake to provide early and comprehensive information, services and support to children with disabilities and their families.
4. States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents.
5. States Parties shall, where the immediate family is unable to care for a child with disabilities, undertake every effort to provide alternative care within the wider family, and failing that, within the community in a family setting.
The information contained in this chapter will enable participants to work towards the following objectives:
· Define the rights to respect for privacy, integrity, home, and the family;
· Explain the importance of these rights for persons with disabilities;
· Understand the interrelationship between these rights and other human rights;
· Identify ways in which these rights have been promoted or denied to persons with disabilities; and
· Understand the provisions related to the rights to respect for privacy, integrity, home, and the family in the Convention on the Rights of Persons with Disabilities (CRPD).
GETTING STARTED: THINKING ABOUT RESPECT FOR PRIVACY, INTEGRITY, HOME, AND THE FAMILY
Societies have long debated where divisions lie between the public sphere, such as the political domain and community activities, and the private sphere, such as a person’s body, home, or family. They have likewise struggled to establish the degree to which the State and individuals should have control in these different spheres. This chapter addresses the private sphere, examining specifically the rights to respect for privacy, personal integrity, the home, and family.
Right to Privacy
The right to privacy encompasses various elements, including:
· Privacy of information: The right of individuals to decide for themselves what information about them should be communicated to others and who those others may be. This information includes thoughts, opinions, actions taken when a person should reasonably expect to be acting in private, and personal information such as that related to a person’s health or finances.
· Privacy of communication: Related to privacy of information, privacy of communication refers to the security of people’s private interactions with others, including letters, telephone conversations, private face-to-face conversations, e-mails, and other forms of communication. In other words, neither the State nor private actors have a right to read your correspondence or listen to your private discussions. There are some exceptions, such as when somebody is suspected of having committed a crime, but even then there are laws that govern these exceptions to ensure that such interference is both necessary and properly handled.
· Personal environment: The right to privacy applies to one’s personal environment, primarily meaning where he or she lives, such as their home, and their family or others with whom they live. It can also apply to other personal spaces, such as a person’s car or other personal property.
· Freedom from attacks on a person’s honour or reputation: The right to privacy protects people from personal attacks on their honour or reputation. For example, unless it is true, people do not have the right to claim to others that you have engaged in some socially unacceptable or other behaviour that might be damaging to your reputation.
Respect for Personal Integrity
Although they are separate rights that address distinct concepts, the right to personal integrity is connected to the right to privacy in that actions and circumstances that lead to the violation of personal integrity are often preceded or joined by violations of the right to privacy. Essentially, the right to personal integrity may be described as the right to be treated in a humane manner and in such a way that preserves a person’s mental and physical “wholeness.” In other words, we all have the right not to be physically or mentally harmed by the State or private actors.
Violations of the Right to Privacy and Respect for Personal Integrity
Persons with disabilities frequently experience violations of their rights to privacy and personal integrity. For example, many persons with disabilities need an assistant or caregiver to help with personal care or to accomplish certain tasks. As a result caregivers often have easy access to a wide variety of personal information such as identification numbers and financial information. It may also be necessary for the caregiver to be in close physical contact with the person, such as when assisting someone to use the bathroom or take a bath. Although persons with disabilities have the right to be treated by their caregivers in a manner that respects their privacy and personal integrity, and although many professional caregivers comply with a code of professional ethics, stories of violations are all too common. These can include misuse and manipulation of personal information, such as using financial information to steal money, as well as incidents of verbal, physical, or mental abuse. Such actions not only violate the rights to respect for privacy and personal integrity, they also violate basic respect for the inherent human dignity of persons with disabilities.
Among the many causes of violations of the rights to respect for privacy and personal integrity are the attitudes and beliefs of other people, especially with regard to persons with intellectual, learning, or psychosocial disabilities. The belief by some that such persons with disabilities are “not capable” of taking care of their own private information may lead to people withholding that information or giving it to people with whom the person with disabilities would not choose to share that information. Additionally some people believe that it is permissible to violate the privacy or the physical or mental integrity of a person with a disability if they are not aware that it is happening. Furthermore, the belief that persons with disabilities should conform their thinking and/or behaviour to what is considered by others as “normal,” can lead to persons with disabilities being forced or coerced into using medications or undergoing “treatments” that can cause both short and long-term mental and physical harm.
Respect for the Home and Family
Other issues traditionally placed in the private sphere involve those relating to a person’s home and family. Although there is no internationally agreed-upon definition of family, the family has been considered the “natural and fundamental group unit of society,” and as such, is protected by a number of different rights. Relevant rights in this area include:
· The right to marry on the basis of the full and free consent of both intended spouses, assuming partners are of “full age”.
· The right to have equal rights with their spouses during their marriage, during legal separation, or if the marriage is dissolved.
· The right to “found a family,” meaning the right of people to live together, to have children, and not to be subjected to discriminatory or compulsory State family planning policies.
· The right to be reunited with their family if they are separated because of political, economic, or other reasons.
· The right to have the family protected by society and the State.
Violations to the Right to Respect for Home and the Family
As with the rights to respect for privacy and personal integrity, persons with disabilities experience many violations of the right to respect for home and the family. For example, although all people of “full age” have the right to marry, many persons with disabilities, especially persons with intellectual or psychosocial disabilities, are denied this right by State legislation, policy, and/or practice. Where they do not wish to marry, persons with disabilities are also often denied the equal opportunity to experience their sexuality and have sexual or other intimate relationships. Even when official State policies do not restrict such relationships, family members, health care professionals, or staff in institutional settings may act to prevent persons with disabilities making and acting upon their own decisions with respect to intimate relationships.
Such violations often stem from assumptions and stereotypes that persons with disabilities “cannot handle” their marriage or relationship responsibilities or that they could “get hurt.” Violations also arise from the belief that persons with disabilities should not have children because they may pass on their disability or be unable to care for their children. Such attitudes have also led to States sponsoring or endorsing practices to forcibly sterilize both adults and children with disabilities, counselling persons with disabilities against having children, or denying women with disabilities access to adequate pre- and post-natal care.
Additionally, persons with disabilities may find they are denied the opportunity to be adoptive parents, guardians, or trustees of children because of their disability. Where persons with disabilities do have children, States or family members often insist that the children be removed and cared for by others because of prevailing assumptions that being raised by parents with disabilities is “not in the best interests of the child.” Even where children are not forcibly removed, many parents with disabilities do not have adequate access to the supports or assistance they may need to help them care for their child. Parents of children with disabilities often experience similar violations of their and their child’s rights to remain together as a family as supports may not be available to them to assist them in their parenting or government officials may insist that the child would be “better off” elsewhere, typically in an institutional setting.
The Interrelationship of Rights
Violations of the right to respect for home and the family can lead to violations of other human rights. For example, preventing persons with disabilities from living with their families constitutes a violation of the right to live independently and be included in the community, which recognizes that persons with disabilities have the same choices as others regarding where and with whom they live. Similarly, forcible sterilization not only denies persons with disabilities the right to have children, but is also a violation of the right to respect for personal integrity and arguably constitutes a form of violence and abuse.
Violations of other human rights also lead to violations of the right to respect for home and the family. For example, lack of access to an adequate standard of living, health care, and rehabilitation services can lead to malnutrition or general ill-health and can compromise the fertility of persons with disabilities. Violations of the rights to equal recognition before the law and also freedom of expression and opinion may deprive persons with disabilities of the opportunity to make, communicate, and act upon their own decisions related to their personal relationships. Similarly, lack of accessible information may deny persons with disabilities the opportunity to learn about sexual relations, family planning, availability of support services, or other information that they need to make informed personal decisions.
Together, the rights to respect for privacy and personal integrity and respect for home and the family address some of the issues of greatest importance to the equality and inherent dignity of persons with disabilities. These examples demonstrate how the rights to privacy and personal integrity and respect for home and the family are indivisible, interdependent, and interrelated with other human rights. As noted by Eleanor Roosevelt, one of the drafters of the Universal Declaration of Human Rights (UDHR), human rights begin “in small places, close to home,” and “unless these rights have meaning there, they have little meaning anywhere.”
Ensuring Privacy and Personal Integrity of Travellers with Disabilities
Although security restrictions and checkpoints have been a part of air travel for many years, their use and rigor has increased in recent years, largely in response to terrorism and other related concerns. The result is that security checks at airports have become more invasive, with many airports around the world requiring travellers to partially undress and/or submit to searches of their luggage. In the USA, such security checks have led to concerns from the disability community that the rights to privacy and personal integrity of travellers with disabilities were being violated, either as a result of the security measures themselves or as a consequence of security staff being unaware of the specific needs of travellers with disabilities.
To address these concerns, the National Council on Disability, the Federal Aviation Administration, the Transportation Security Administration (TSA), and the disability community worked together to develop guidelines and training programmes that would address security considerations in conjunction with the rights of travellers with disabilities. The trainings are intended to raise awareness of security staff of the rights and needs of travellers with disabilities, as well as ensure that they know what the guidelines are and how to implement them. To ensure that travellers with disabilities are aware of their rights, the TSA has provided information on its website so that travellers can prepare themselves before they travel. Should travellers feel that their rights have been violated, they can contact the TSA’s Office of Civil Rights.
Source: Transportation Security Administration, “Tips for the Screening Process: Travelers with disabilities and medical conditions”: http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1567.shtm
WHAT DOES HUMAN RIGHTS LAW SAY ABOUT RESPECT FOR PRIVACY, INTEGRITY, HOME, AND THE FAMILY?
Article 12 of the Universal Declaration of Human Rights (UDHR) addresses the right to privacy, setting forth protections against interference and attacks upon honour or reputation. Issues related to the right to marry and found a family, as well as protection of the family by society and the State, are addressed in UDHR Article 16. Similar provisions appear in Articles 17 and 23 of the International Covenant on Civil and Political Rights (ICCPR), as well as Articles 14 and 44 of the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (ICRMW). The International Covenant on Economic, Social and Cultural Rights (ICESCR) does not address issues of privacy or integrity, which are civil and political rights. However, Article 10 does address the need for the State to provide protection and assistance to the family as the “natural and fundamental group unit of society.” Similarly, the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) does not address issues of privacy, but in Article 16 does address the need for equality between men and women in marriage, including in decisions regarding the number and spacing of children.
Article 16 of the Convention on the Rights of the Child (CRC) mirrors the previously referenced provisions in its treatment of the right of a child to be free of interference with his or her “privacy, family, home or correspondence,” and to be free from “unlawful attacks on his or her honour or reputation.” The CRC contains numerous references to the family, though Article 9 is perhaps the most relevant as it addresses the right of children not to be separated from their parents unless it is in the best interests of the child to do so. In addition, Article 23, which specifically addresses the rights of children with disabilities, references the need to provide appropriate assistance to the parents or other caregivers of children with disabilities.
None of these human rights instruments specifically reference “personal integrity.” They do, however, address the related concepts of “privacy,” “security of the person,” or “safety of the person,” often in the context of deprivation of liberty, as well as the concept of “inherent human dignity.”
The CRPD draws from the full range of approaches taken in prior human rights instruments and places the issues in the context of disability. CRPD Article 17, Protecting the integrity of the person, clearly indicates that persons with disabilities have the right to have their physical and mental integrity respected on an equal basis with others. The language contained in Article 17 closely mirrors that found in some regional human rights instruments, such as Article 5(1) of the Inter-American Convention on Human Rights, which appears in that Convention’s section on the “right to humane treatment.”
Issues of privacy in the CRPD are dealt with almost exclusively in Article 22, Respect for privacy, which protects persons with disabilities from “arbitrary or unlawful interference with his or her privacy, family, home or correspondence or other types of communication,” as well as from unlawful attacks on “honour or reputation.” The Article does not, for example, prevent the police from carrying out a valid search of the belongings of a person with a disability, but it would prevent other types of searches or surveillance that are arbitrary or unlawful. In order to emphasize the importance of the right even in places such as institutions, where persons with disabilities have historically experienced many violations of privacy, Article 22 expressly states that these protections extend regardless of “place of residence or living arrangements.”
Also noteworthy is Article 22’s reference to “other types of communication,” which was intended by drafters to update the more traditional reference to “correspondence.” Some drafters felt that “correspondence” was too strongly connected to letters, and that there was a need to ensure that e-mail, text messaging, and other more modern and future forms of communication would be covered by the Convention. Lastly, Article 22 emphasizes the right of persons with disabilities to have their personal, health, and rehabilitation information protected on an equal basis with others. This concept is reflected again in Article 31(1)(a), Statistics and data collection, which requires States to “ensure confidentiality and respect for the privacy of persons with disabilities” when collecting and maintaining statistics and data.
The right to respect for home and the family is addressed at some length in CRPD Article 23, Respect for home and family. Because of the historic discrimination against persons with disabilities in the areas of marriage, family, parenthood, and relationships, Article 23 addresses each of these in some detail. Specifically:
· Article 23(1)(a) protects the right of persons with disabilities to marry with the free and full consent of each person and to found a family.
· Article 23(1)(b) protects the rights of persons with disabilities to make their own decisions regarding when and how many children to have. It also ensures access to “age appropriate” information and “reproductive and family planning education,” so that persons with disabilities can make informed decisions in these matters.
· Article 23(1)(c) addresses the right of persons with disabilities, including children, to “retain their fertility on an equal basis with others.” This provision not only protects against forced sterilization of children and adults with disabilities, but also implicates the right of persons with disabilities to have access to health care, nutrition, and other factors that are pre-conditions to retaining fertility.
· Article 23(2) ensures that persons with disabilities have the right to be guardians, trustees, adoptive parents, or the like, wherever such rights also exist for other people. In other words, persons with disabilities should not be prevented from assuming child-rearing responsibilities because they are persons with disabilities. Furthermore, should parents with disabilities need assistance to perform their child-rearing responsibilities, the States must provide them “appropriate assistance.”
· Article 23(3) addresses some of the rights of children with disabilities, specifically the rights not to be concealed, abandoned, neglected, or segregated. It also requires States to provide information, services, and support to children with disabilities and their families.
· Article 23(4) requires that children should not be separated from their parents unless it is in the “best interests of the child” and the decision has been made by “competent authorities” and “in accordance with applicable law and procedures.” Furthermore, Article 23(4) does not permit a child to be separated from its parents on the basis of disability, regardless of whether it is the child and/or one or both of the parents who are disabled.
· Article 23(5) addresses the situation of children with disabilities who may not be in a position to be cared for by their immediate family. The State should “undertake every effort to provide alternative care within the wider family,” and if that is not possible, then “within the community in a family setting.” This is to prevent the practice, common in many countries, of automatically sending children with disabilities to live in institutional settings where their immediate families cannot care for them.
The Duty to Respect, Protect, and Fulfil Obligations Relating to the Right to Privacy, Integrity, Home, and the Family
Taken as a whole, States’ obligations with regard to the right to respect for privacy, integrity, the home, and family, 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 privacy, integrity, home and the family.
Example: The State repeals a law that prohibits persons with disabilities from marrying or being parents.
Example: The State ensures that all persons with disabilities have equal access to sex education, including persons with intellectual disabilities.
2. Obligation to protect: States must ensure that non-State or private actors do not violate the rights to privacy, integrity, home, and the family.
Example: The State monitors and regulates health care and rehabilitation providers to ensure that private information of persons with disabilities remains private.
Example: The State monitors conditions in private institutional living arrangements such as hospitals, group homes, and orphanages, as well as enforces rights of personal integrity and privacy.
3. Obligation to fulfil: States must take proactive action to ensure enjoyment of the rights to privacy, integrity, home, and the family by persons with disabilities.
Example: The State provides support to families of parents and or children with disabilities so that they can remain together.
Example: The State adopts an action plan to transition persons with disabilities living in institutions to community-based living arrangements.
In sum, international human rights law strongly supports the rights of persons with disabilities to privacy, respect for personal integrity, the home, and family so that they may fully enjoy these rights on an equal basis with others. The enjoyment of these rights facilitates the enjoyment of other human rights.
Personal Integrity for Persons with Disabilities
· Women and girls with disabilities are particularly vulnerable to abuse. A small 2004 survey in Orissa, India, found that virtually all of the women and girls with disabilities were beaten at home, 25 percent of women with intellectual disabilities had been raped, and 6 percent of women with disabilities had been forcibly sterilized.
· According to UNICEF, 30 percent of street youths have disabilities.
· The United Kingdom’s Department for International Development reports that mortality for children with disabilities may be as high as 80 percent in countries where under-five mortality as a whole has decreased below 20 percent, adding that in some cases it seems as if children are being “weeded out”.
· In the United States, reports of violence against persons with disabilities have been shown to be 4-10 times greater than that reported against persons without disabilities. The prevalence of sexual violence against persons with disabilities has been shown to be even higher.
· Violence against students with disabilities in educational settings by teachers, other staff, and fellow students is common.
· Persons with disabilities are more likely to be victims of violence or rape, according to a 2004 British study, and less likely to obtain police intervention, legal protection, or preventive care.
· Research indicates that violence against children with disabilities occurs at annual rates at least 1.7 times greater than for their peers without disabilities.
Source: UNICEF, “Be in the Know: Fact Sheet on children with disabilities,” Voices of Youth: http://www.unicef.org/explore_3893.html
USEFUL RESOURCES ON RESPECT FOR PRIVACY, INTEGRITY, HOME, AND THE FAMILY
· American Medical Association, “Patient Confidentiality”; http://www.ama-assn.org/ama/pub/physician-resources/legal-topics/patient-physician-relationship-topics/patient-confidentiality.page
o Discussing legal aspects of patient rights to privacy.
· Committee on Economic, Social and Cultural Rights, General Comment No. 5, Persons with Disabilities (1994): http://www2.ohchr.org/english/bodies/cescr/comments.htm
o Discusses the obligations in the ICESCR in the context of disability.
· Human Rights Committee, General Comment No. 16, The right to respect of privacy, family, home and correspondence, and protection of honour and reputation (1988): http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/23378a8724595410c12563ed004aeecd?Opendocument
o Human Rights Committee interpretation of the ICCPR in respect of privacy rights..
· Human Rights Committee, General Comment No. 19, Protection of the family, the right to marriage and equality of the spouses (1990): http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/6f97648603f69bcdc12563ed004c3881?Opendocument
o Human Rights Committee interpretation of the ICCPR in respect of family and marriage rights.
· World Health Organization, “Patients’ rights”: http://www.who.int/genomics/public/patientrights/en/
o WHO resource discussing patient rights, such as privacy.