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, and 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.

As with the rights to respect for privacy and personal integrity, people 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 people with disabilities, especially people with intellectual or psycho-social disabilities, are denied this right by State legislation, policy, and/ or practice. Where they do not wish to marry, people 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 people with disabilities making and acting upon their own decisions with respect to intimate relationships.

Such violations often stem from assumptions and stereotypes that people with disabilities "cannot handle" their marriage or relationship responsibilities or that they could "get hurt." They also arise from the belief that people 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 people with disabilities against having children, or denying women with disabilities access to adequate pre- and post-natal care.

Additionally, people with disabilities may find they are denied the opportunity to be adoptive parents, guardians, or trustees of children because of their disability. Where people with disabilities do have children, States or other 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.

These and other violations of the right to respect for home and the family can lead to violations of other human rights. For example, preventing people 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 people with disabilities have the same choices as others regarding where and with whom they live. Similarly, forcible sterilization not only denies people with disabilities the right to have children, but is also a violation of the right to respect personal integrity and arguably constitutes a form of violence and abuse.

Violations of other 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 compromise the fertility of people with disabilities. Violation of the rights to equal recognition before the law and also freedom of expression and opinion may also deprive people 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 people 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 people with disabilities. As noted by Eleanor Roosevelt, one of the drafters of the Universal Declaration of Human Rights, human rights begin "in small places, close to home," and "unless these rights have meaning there, they have little meaning anywhere."

1. Brainstorm/Discuss:
Divide participants into small groups and assign each one of these situations:

• Visiting the doctor;
• Telephoning, or writing a letter or e-mail to a friend;
• Visiting the bank;
• Meeting with your child’s teacher to discuss the child’s performance at school.

• In which instances do people with disabilities need to enjoy privacy, personal integrity,
  and/or respect for home and family in order to participate fully? Make a list of life activities.
• What information might people with disabilities reasonably expect to be kept private?
• Would the personal integrity involve mental or physical integrity, or both?
• Who might be responsible for respecting the rights in the different examples?

2. Report:
Ask a spokesperson from each group to summarize their discussions.

• What similarities do you observe in experiences in these different settings?
• Are there other situations in everyday life when similar issues occur?
• What can people with disabilities do in these situations to protect their privacy and integrity?

3. Discuss:

• What changes can be made to protect the privacy and integrity of people with disabilities?

1. Analyze:
Using the list of life activities used in Exercise 1 and the responses that were given in the discussion, ask each participant (or pair of participants) to choose one activity and to evaluate the barriers a person with disabilities might face in enjoying the rights to respect for privacy, personal integrity, the home, and family whilst participating in that activity.

2. Role Play:
Ask each participant or pair to report on their analysis and to role play at least one fictional example of the barriers a disabled person might face in enjoying the rights to respect for privacy, personal integrity, the home, and family while participating in that particular life activity. Variation: Role play both best- and worst-case versions of confronting these barriers, illustrating ways that such barriers might be addressed.

3. Discuss:

• What are the consequences when people with disabilities do not enjoy respect for their privacy, personal integrity, home and family? To the person with disability? To society as a whole?
• Which barriers have the greatest effect on people with disabilities?
• What can be done to eliminate these most significant barriers?

Article 12 of the Universal Declaration of Human Rights (UDHR) addresses the right to privacy, setting forth the protections against interference and attacks upon honor 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 Article 16. Similar provisions appear in Articles 17 and 23 of the International Covenant on Civil and Political Rights (ICCPR),3 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).4Although the International Covenant on Economic, Social and Cultural Rights (ICESCR)5 does not address issues of privacy or integrity (which are civil and political rights), 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)6 does not address issues of privacy, but does address, in Article 16, 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)7 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 honor or reputation." As one might expect, 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. Also Article 23, which specifically addresses the rights of children with disabilities, references the need to provide appropriate assistance to the parents or other care-givers of children with disabilities.

None of these human rights instruments specifically reference "personal integrity," though they address the related concepts of "privacy," "security of the person" or "safety of the person," often in the context of deprivation of liberty, and of course, the fundamental concept of "inherent human dignity." However, the non-legally binding UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities (Standard Rules)8 does specifically address personal integrity, including in the context of family life. Rule 9 emphasizes the full participation of people with disabilities in family life, as well as the need to promote the right to personal integrity and "ensure that laws do not discriminate against persons with disabilities with respect to sexual relationships, marriage, and parenthood." It also speaks to the need for education and awareness of how to prevent, recognize, and respond to situations of sexual and other forms of abuse. In addition, Rule 13 highlights the need to "protect individual privacy and personal integrity" when involved in the collection and dissemination of information and research.

The Convention on the Rights of Persons with Disabilities (CRPD) draws from the full range of approaches taken in prior human rights instruments and places the issues in the context of disability. Article 17 (Protecting the integrity of persons) clearly indicates that people with disabilities have the right to have their physical and mental integrity respected on an equal basis with others. This language closely mirrors that found in some regional human rights instruments, such as Article 5(1) of the Inter-American Convention on Human Rights,9 which appears in that convention’s section on "right to humane treatment."

Issues of privacy in the CRPD are dealt with almost exclusively in Article 22 (Respect for Privacy), which protects people 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 "honor or reputation." The Article does not, for example, prevent the police from carrying out a valid search of a disabled person's belongings, 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 people 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 the Article'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 people 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 Article 23 of the CRPD. Because of the historic discrimination against people 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 people 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 people 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 people with disabilities can make informed decisions in these matters.
• Article 23(1)(c) addresses the right of people 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 people with disabilities to have access to health care, nutrition, and other factors that are pre-conditions to retaining fertility.
• Article 23(2) ensures that people 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, people with disabilities should not be prevented from being guardians, trustees, or adoptive parents because they are people with disabilities. Furthermore, States must provide "appropriate assistance" to parents with disabilities, should they need such assistance to perform their child-rearing responsibilities.
• 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 their 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 when they cannot be cared for by their immediate family.

Taken as a whole, States' obligations with regard to the right to respect for privacy, integrity, the home, and family, include:

1. The Obligation to respect the right by refraining from engaging in any act, custom or practice that creates barriers to enjoyment of the right (e.g., prohibiting people with disabilities from marrying or being parents);
2. The Obligation to protect the right by ensuring that non-State or private actors do not violate these rights (e.g., by monitoring and regulating health care and rehabilitation providers to make sure that private information of people with disabilities remains private);
3. The Obligation to fulfill means that States must take proactive action to ensure enjoyment of the right by people with disabilities (e.g., through providing support to families of parents and or children with disabilities, so that they can remain together).

In short, international human rights law strongly supports the rights of people with disabilities to respect for privacy, integrity, the home and family, so that they may fully enjoy these rights on an equal basis with others.

1. Review:
Divide the participants into small groups. Ask each group to work together to discuss one of the sections of Articles 17, 22, and 23. Specifically, what does each section require be achieved? Who is responsible? What challenges might there be to implementation and how can these be overcome?

2. Discuss:
Have the groups report on the outcomes of their discussions.

3. Give examples:
Ask for examples of how each of the provisions of Articles 17, 22, and 23 could be applied to the real life examples discussed in Exercises 7.1 and 7.2.

4. Discuss:
How can Articles 17, 22, and 23 of the CRPD be used to set national disability rights agendas and formulate platforms of action for submission to political parties or government decision- makers? What would it mean in your country?

Emphasize that human rights involve both rights and responsibilities.

• Ask if after learning about the right to respect for privacy, integrity, home and the family, the group is ready to think about taking concrete action.
• Acknowledge that, although there is still much planning and information gathering to do, commitment to creating change is also very important.
• Explain that you would like to ask each participant to name one individual action, however small, that she or he is willing and able to take in the next month to promote the right to respect for privacy, integrity, home and the family to ensure their full enjoyment of all human rights.

For planning advocacy for the human rights of people with disabilities, see Part 3, "Advocacy! Taking Action for the Human Rights of People with Disabilities," p. 229.