Navigation

Main Index

Part2 Chapter 8 »

Part 1

Part 2

Part 3

Annexes


CHAPTER 7:

PRIVACY, INTEGRITY, HOME, AND THE FAMILY

 
UN 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:

    1. 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;

    2. 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;

    3. 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.
 

 


OBJECTIVES

The background information and exercises contained in this chapter will enable participants to work towards the following objectives:

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.


Privacy and Respect for Personal Integrity

Today, the right to privacy includes a variety of elements, including:

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 human 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.

Although people with disabilities have as much right to privacy and personal integrity as all others, they frequently experience violations of these rights. For example, many people 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 people 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 people with disabilities.

Among the many causes of violations of the rights to respect for privacy and personal integrity, a predominant cause is the attitudes and beliefs of other people, especially with regard to people with intellectual, learning, or psycho-social disabilities. The belief by some that such people with disabilities are "not capable" of taking care of their own private information may lead to people withholding that information or giving the information 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 physical or mental integrity of a person with disabilities, if they are not aware that it is happening. Furthermore, the belief that people with disabilities should confirm their thinking and/or behavior to what is considered by others as "normal," can lead to people with disabilities being forced or coerced into using medications or undergoing "treatments" that can cause both short and long-term mental and physical harm.

It is important to address such violations, not only so that people with disabilities can enjoy the rights to respect for privacy and personal integrity, but also because enjoyment of these rights can impact enjoyment of other human rights. For example, violations of the right to respect for personal integrity can, if left unchecked, progress into violations of the right to be free from torture, violence and abuse. Violations of the right to privacy may discourage people with disabilities from exercising their rights to freedom of expression and opinion, or to participate in political and public life. Similarly, violations of other rights may lead to violations of the rights to respect for privacy and personal integrity. For instance, lack of access to quality health care programs and services may expose people with disabilities to poor health-data management practices that violate the right to privacy, or to health care professionals that do not respect the right to personal integrity. Also, lack of access to justice may prevent people with disabilities from seeking a remedy for violations of privacy or personal integrity, resulting in such violations continuing.


To Top
To Top
 / Page Up
Page Up / 



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-

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."


Exercise 7.1: What does it Mean to Enjoy the Rights to Respect for Privacy, Integrity, Home, and the Family?



Objective:
To understand what it means to enjoy the rights to respect for privacy, integrity, home, and the family
Time:
40 minutes
Materials:
Chart paper and markers or blackboard and chalk





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

Ask each group to discuss the experience of people with disabilities in this situation:

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

3. Discuss:


To Top
To Top
 / Page Up
Page Up / 





The Ethics of Personal Assistance

Those providing caregiver services to people with disabilities need to do so in a manner that
respects the human rights of the people they are assisting. Although there is no internationally-
accepted code of conduct for professional caregivers, the following is one example of a
code for personal assistants that emphasizes respect for the rights of consumers, produced
by the University of Missouri-Columbia School of Health Professions:
  • Respect an employer's/consumer's rights regardless of race, religion, sexual preference,
    or other beliefs.
  • Acknowledge that the employer/consumer is in charge of the working relationship and
    that the employer/consumer has the right to make the final decision concerning his/her
    assistance.
  • Refrain from any act of abuse, neglect, or exploitation.
  • Do not put personal preferences before the employer's/consumer's choice.
  • Safeguard the employer’s or consumer’s right to privacy.
  • Act to safeguard the consumer and the public when home-based assistance, health
    care and safety are affected by the incompetent, unethical, or illegal practice of any
    person.
  • Assume responsibility and accountability for individual judgments and actions.
  • Maintain competency levels in regard to home-based assistance.
  • Exercise informed judgment and use individual competence and qualifications as criteria
    for seeking consultation, accepting responsibilities, and delegating activities to others.
  • Make an effort to establish and maintain conditions of employment that promote high
    quality assistance.
  • Make an effort to protect the public from misinformation and misrepresentation, and
    maintain integrity of home-based assistance.1

 


Exercise 7.2: Understanding Barriers to Respect for Privacy, Integrity, Home, and the Family



Objective:
To identify barriers to enjoyment of the rights to respect for privacy, personal
integrity, the home, and family faced by people with disabilities
Time:
40 minutes
Materials:
List of life activities generated in Exercise 1






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:


To Top
To Top
 / Page Up
Page Up / 





Ensuring Privacy and Personal Integrity of Travelers 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 are often more invasive than they
used to be, with many airports around the world requiring travelers to undress to some degree,
and/or submit to searches of their luggage. In the U.S., this led to concerns from the disability
community that the rights to privacy and personal integrity of travelers 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 travelers with disabilities.

To address these concerns, the National Council on Disability, the Federal Aviation
Administration, the Transport Security Administration (TSA) and the disability community
worked together to develop guidelines and training programs that would address the rights
of travelers with disabilities, as well as security considerations. The trainings are intended to
raise awareness of security staff of the rights and needs of travelers with disabilities, as well
as ensure that they know what the guidelines are and how to implement them. To ensure that
travelers with disabilities are aware of their rights, the TSA has provided information on its
website, so that travelers can prepare themselves before they travel. Should travelers feel that
their rights have been violated, they can contact the TSA's Office of Civil Rights. The following
are excerpts of some of the rights and responsibilities addressed in the guidelines:
  • If a personal search is required, you may choose to remain in the public area or go to a
    private area for your screening. If you refuse either option you will not be able to fly.
  • You should be offered a private screening before the beginning of a pat-down inspection if
    the pat-down will require the lifting of clothing and/or display of a covered medical device.
  • You may request a private area for your personal search at any time during the screening
    process.
  • Your companion, assistant, or family member may accompany you and assist you during
    a private or public screening. After providing this assistance, the companion, assistant, or
    family member will need to be rescreened.
  • You may request a pat-down inspection in lieu of going through the metal detector or being
    handwanded. You do not need to disclose why you would like this option.
  • If you have a disability, condition, or implant, that you would like to remain private and
    confidential, ask the Security Officer to please be discreet when assisting you through the
    screening process.2

 


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 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:





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.


Exercise 7.3: Understanding Respect for Privacy, Integrity, Home, and the Family



Objective:
To review and understand the provisions on rights to respect for privacy, integrity,
home and the family in the CRPD
Time:
45 minutes
Materials:
Chart paper and markers or blackboard and chalk






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?





Personal Integrity for Children with Disabilities

The following data, provided by UNICEF on its website, strongly suggests that
many children with disabilities around the world experience significant challenges
to the enjoyment of their full physical and mental integrity, in addition to other
human rights, both inside and outside the home:
  • 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 disabled women 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".
  • 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.10

 


To Top
To Top
 / Page Up
Page Up / 



Exercise 7.4: Making a Commitment to Promote Respect for Privacy, Integrity, Home, and the Family



Emphasize that human rights involve both rights and responsibilities.

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.



USEFUL RESOURCES ON RESPECT FOR PRIVACY, INTEGRITY, HOME, AND THE FAMILY




________________
1
"Enhancing Independence: An Assistant's Guide to Personal Assistance Services." 1995. Missouri Model Spinal Cord Injury System (MOMSCIS), School of Health Professions, University of Missouri-Columbia. http://www.umshp.org/hp/resources/sci/atmanual/atman2.shtml
2
"Tips for the Screening Process: Travelers with disabilities and medical conditions." Transportation Security Administration. http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1567.shtm
3
4
5
6
7
8
9
10
"Be in the Know Fact Sheet on children with disabilities." UNICEF: Voices of Youth. http://www.unicef.org/explore_3893.html



«– Main Index

shafallah_flower_footer CHAPTER 7: PRIVACY, INTEGRITY, HOME, AND THE FAMILY