Our beliefs about families, based on our own personal experience, are usually accurate.

Introduction

Relationships, marriage and family are at the core of every community. Families are universally recognized as an important source of support and security. They can provide safe and stable environments which nurture the growth and development of each member throughout the different stages of life, from birth to old age.

Families are diverse and influenced by a range of factors including cultural, traditional and religious practices. Families may be classified as nuclear, extended, single-parent, child-headed, foster, or adoptive. It is important to recognize this diversity and also to recognize that people with disabilities have a right to establish their own families. Article 23, from the Convention on the Rights of Persons with Disabilities, highlights that “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” (2).

This element highlights the importance of supporting people with disabilities to establish relationships, marry and become parents if they choose. It also highlights the issue of violence that people with disabilities may experience within their relationships, marriages and families, and the importance of recognizing and addressing this issue.

BOX 8Malawi

A courageous journey to motherhood

“I am over forty years now and I am proud that I have fought every inch to become what I am. While growing up, I kept on dreaming that I would have a baby of my own because all my sisters were married and had their own. They used to send their children to assist me doing daily chores but could not let them sleep at my house. I was working and staying in my own house as an independent person, but was still treated like an infant. At night I used to feel so lonely, had no one to talk to, no one to bring me water, no sharing of food. That was horrible!!

At the age of 25 I got pregnant. This news brought shock to my sisters, aunts and uncles, because that was the last thing they ever expected of me...I was told delivering a child was another horrible thing that I could not face due to my disability….The sad news I got was that I should abort the pregnancy because all my sisters had gone through child delivery and they thought I could not manage to go through the process. They frightened me by saying that ‘if able-bodied women die during delivery, who are you to try that?’ They even sent a message to the man who was responsible for my pregnancy and threatened to take him to the police. I told them that the gentleman admitted he did not follow the right procedure but accepted to take me as a wife.

Arrangements were done by my sisters together with my aunt to take me to the hospital for abortion, but what they did not know was that I had made up my mind to keep the pregnancy and that I was eager to see a child of my own. I privately went to see a doctor for counselling and advice on the pregnancy. I was assured by the doctor that it was possible for me to deliver a healthy baby.

Time came when I gave birth to a beautiful baby girl. This became the time of joy and reconciliation to the whole family. They were all happy and became very supportive. Few years later I got married to the man and had a handsome baby boy. I am a happy mother of these two children. The girl is now 18 years old and the boy is 14 years old. My children are very accepting and comfortable that I am their mother.

This is a personal experience on how I struggled to become a parent with disability. All one need is courage! I made up my mind and became strong. According to my personal experience, I have seen that motherhood for a woman with disability is undesirable to the non-disabled society. What everyone needs to know is that the decision to have a child or not, or adopt a child is the right and responsibility of every person including a person with disability.

— Julian Priscilla Mabangwe, Malawi Council for the Handicapped (3).

Goal

People with disabilities fully realize their positions and roles within their families and communities.

The role of CBR

The role of CBR is to support people with disabilities to have fulfilling relationships with members of their families and communities.

Desirable outcomes

• Community members are aware and accept that people with disabilities can have meaningful relationships, marry and have children.

• Parents with disabilities and parents of people with disabilities have access to appropriate services and programmes to support them in their parenting roles.

• Families encourage and support their members with disabilities to socialize and develop relationships outside the home.

• People with disabilities are protected against violence, and all relevant stakeholders work together to address the issue.

• People with disabilities who have limited social networks are well supported in their communities.

Key concepts

Relationships

Fulfilling personal relationships are important to everyone and are essential for personal growth and development. Stimulating, lasting and satisfying relationships with family, friends and partners are a high priority for most people, including people with disabilities.

Family

Belonging to a family

The word “family” can mean different things to different people. Families come in many shapes and sizes but something that they all have in common is that they provide a sense of belonging. Families can also provide an environment for learning and development and provide safety and security for children and vulnerable family members including people with disabilities.

Family responses to disability

Every family responds differently to disability. One family may find it difficult to accept the birth of a child with an impairment, but another may simply be afraid and need more information about what the future holds, while a third may celebrate the birth of their child.

Families can be effective advocates and powerful agents of change to ensure the inclusion of people with disabilities. They can have a positive influence on the expectations of family members with disabilities and also influence the attitudes of the community.

Sexuality

Sexuality is an important part of health and well-being. However, in many societies discussion of the subject is sensitive and even taboo, particularly as it relates to disability, around which myths and misconceptions may go unchallenged. For example, people with disabilities are often viewed as being asexual, infertile, or as having overly high sex drives; these views may not only be held by community members but also by medical professionals and in some case people with disabilities themselves. It is important to be aware that people with disabilities have sexual needs, as does everyone else. The unfortunate reality is however that these needs are either ignored or denied (see Supplementary booklet on CBR and HIV/AIDS).

BOX 9Uganda

Misconceptions

A female youth member of a disabled people's organization in Uganda, the National Union of Disabled Persons of Uganda (NUDIPU), noted “We are not invited to these community outreach programmes which are always held at health centres....in fact, people think that we are not sexually active because we are disabled”.

Marriage and parenthood

It is often assumed that people with disabilities will automatically have children with disabilities. There is also a common belief that people with disabilities will not be able to care for and support their children independently. In extreme cases, people with disabilities, particularly adolescent girls and women with intellectual impairment, have been sterilized without their knowledge or consent. The Convention on the Rights of Persons with Disabilities, Article 23, refers to marriage and parenthood, to the rights of persons with disabilities to: marry and found a family, decide freely and responsibly on the number and spacing of their children, have access to age-appropriate information, reproductive and family planning education, and to retain their fertility (2).

BOX 10

Wanting a family

“I have a dream of getting married, having a home with children, but my parents told me that marriage is not for me because I would not be able to look after a family. I was shattered with disbelief” (5).

Violence

Violence can occur in every part of society, within families and institutions, and in schools, workplaces, and the community; many different people are responsible. People with disabilities are disproportionately susceptible to violence, particularly because of stigma, negative traditional beliefs and ignorance; they are at increased risk of becoming victims of physical, sexual, psychological and emotional abuse, neglect, and financial exploitation. Women with disabilities may be particularly exposed to forced sterilization and sexual violence (6).

Suggested activities

Challenge and address stigma, prejudice and discrimination

Negative attitudes, perceptions and practices towards people with disabilities are present in many communities. CBR programmes can challenge and address these by:

• working with the media to promote positive images and role models of people with disabilities;

• supporting disability awareness training for health professionals to ensure that sexual and reproductive health services, e.g. family planning, are accessible to people with disabilities;

• working with leaders in the community, e.g. religious leaders, to encourage them to create awareness about disability, challenge stigma and discrimination, and create opportunities for community discussions about sensitive issues.

BOX 11Liberia

Exploring sexuality and disability issues

A CBR programme managed by a local nongovernmental organization in Liberia realized they had never addressed issues related to sexuality and disability. The programme set out to learn about these issues by holding discussions with people with disabilities. Discussions with women with disabilities showed that being able to express their sexuality was important; however, they were often fearful of doing this. They also thought that sex was important for them so they could become mothers, which was a valued social role in their communities. In some instances non-disabled men had sexually abused women with disabilities. It was perceived that this abuse was caused by negative attitudes towards disability that resulted in men thinking that a public relationship with a woman with disabilities would stigmatize them.

Provide support for parents

To enable parents to make good parenting decisions, access to information and support is needed. CBR programmes should consider both parents with disabilities and parents of people with disabilities.They can provide support by:

• identifying local services that can provide support to parents, e.g in sexual and reproductive health, maternal and child health, and family support;

• advocating with disabled people's organizations and other organizations for the inclusion of parents with disabilities, and parents of people with disabilities, in mainstream services and programmes;

• developing and supporting referral systems to facilitate access for people with disabilities, especially women and adolescents, to services and programmes;

• working with service providers to distribute accurate information on sexual and reproductive health in accessible formats through CBR networks.

Work with families to promote independence

Sometimes families overprotect their members with disabilities by sheltering them in the home and preventing them from socializing in the community, thus limiting their opportunities to develop relationships with others or to develop various skills and abilities. CBR programmes can work with families to:

• provide information and support to address their concerns regarding their members with disabilities, as well as for their own position and status within the community;

• help families to recognize the negative consequences of overprotection;

• encourage family members to become advocates for changing negative attitudes within the community;

• support people with disabilities to effectively communicate and self-advocate for their own needs and wants.

Help to prevent violence

Violence of any type can be a challenging issue for CBR personnel. As CBR programmes work across different environments (e.g. homes, schools, workplaces, communities) they are in a good position to ensure that strong social networks and supports are in place to protect people with disabilities from violence (see also Justice). CBR programmes can:

• build the capacity of CBR staff to recognize the signs and symptoms of violence, ensuring they know where to access appropriate legal advice and support for people with disabilities;

• raise awareness within communities about violence and disability and about actions that can be taken to protect people with disabilities;

• establish links with relevant stakeholders (e.g. families, disabled people's organizations, health-care/education personnel, law enforcement officers, community leaders, local authorities), and talk to them about their role in protecting people with disabilities from violence;

• develop procedures with stakeholders which enable people with disabilities to report episodes of violence in confidence;

• provide information about violence to people with disabilities and ensure they know how they can report episodes of violence confidentially;

• ensure people with disabilities have opportunities to participate in community life to increase their self-esteem and confidence, and develop social networks which will help protect them from violence;

• support people with disabilities who have experienced episodes of violence by talking with them, assisting them to access health-care services, and assisting them to develop solutions and take action;

• ensure that programme and organizational policies are in place to check that CBR staff and volunteers have no criminal history of violence.

Support people with limited social networks

Some people with disabilities may not have families, or their families may not be able to provide them with the support and assistance they need. So some people with disabilities live in residential institutions, hostels, religious communities or sheltered housing, or are homeless. In these situations, CBR programmes can:

• link people with disabilities to appropriate support networks in the community, e.g. disabled people's organizations and self-help groups;

• work with residential institutions to ensure people with disabilities are still able to participate and be included in community life;

• support people with disabilities to access their preferred living arrangements;

• support people with disabilities who are homeless to find appropriate accommodation, preferably in the community;

• watch for any indications of violence in the settings in which people with disabilities live.

What are the family beliefs?

How does family influence your beliefs?

What is your own concept of a family explain?

Why is the family important to individuals personally?