Introduction
Responses to human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) are often targeted at key populations that are believed to be at increased risk, such as migrant workers, sex workers, men who have sex with men, injecting drug users and indigenous people (1). However, one of the world's most vulnerable populations – individuals who live with permanent physical, mental, intellectual or sensory impairments – has almost been entirely overlooked (2). It is commonly assumed that people with disabilities are not at risk of HIV infection because it is believed that they are not sexually active, are unlikely to use drugs and are at less risk of rape and violence (3).
The recent Joint United Nations Programme on HIV/AIDS (UNAIDS), World Health Organization (WHO) and Office of the High Commissioner for Human Rights (OHCHR) joint policy brief on Disability and HIV recognizes that people with disabilities is a key population at high risk of exposure to HIV (4). However, governments and policy-makers rarely consider disability issues in HIV/AIDS policies and plans. This issue and a number of other barriers make HIV prevention, treatment, care and support programmes and services unavailable and inaccessible to people with disabilities.
While this section mainly focuses on disabled people, and their vulnerability to HIV/AIDS and limited access to mainstream programmes and services, CBR programmes also need to consider that people living with HIV/AIDS may experience disability as a result of the disease and its treatments. People living with HIV may be considered to have a disability when they develop impairments which, in interaction with their environment, restrict their full and effective participation in society on an equal basis with others (5).
The issue of disability and HIV/AIDS has been overlooked in many CBR programmes. However, as a strategy for community-based inclusive development, CBR can be effective in raising the profile of disability in HIV/AIDS programmes and services. CBR ensures that the needs of people with disabilities are addressed, and responds to the needs of and supports the social inclusion and equalization of opportunities for people living with HIV/AIDS who may come to experience disability.
BOX 10Namibia
Alexia pushes for laws for people with disabilities
Alexia Manombe-Ncube, Namibia's first-ever Member of Parliament with a disability, has commented that in many African countries people with disabilities have a higher rate of HIV infection than non-disabled people.
She asserts that the general exclusion of disabled people from mainstream society is to blame. Visually impaired people, for instance, cannot read health education posters or advertisements. People with hearing impairments miss television and radio programmes on how to prevent the spread of infection. Those with mobility problems sometimes cannot get into health centres for advice or testing. Health education materials are rarely available in alternative formats such as Braille or sign language. Disabled people are sometimes even directly targeted. Women and girls with intellectual impairments may be easily persuaded into having unsafe sex.
Yet how many health service providers genuinely consider these issues in their programmes? Ms Manombe-Ncube is using her position to push for new laws on disability in the Namibian Parliament. Without including access to both prevention and treatment of HIV/AIDS for people with disabilities, it will be impossible to meet Millennium Development Goal 6: combat HIV/AIDS and other diseases.
Adapted from (5)
Goal
There is universal access to HIV/AIDS prevention, treatment, care and support programmes and services for people experiencing disability.
The role of CBR
The role of CBR is to: (i) ensure that people with disabilities and their families are aware of the HIV/AIDS programmes and services in their communities; (ii) ensure that HIV/AIDS programmes and services are accessible for people with disabilities and their families; and (iii) include in its programmes people living with HIV/AIDS who may be experiencing temporary or permanent disability.
Desirable outcomes
People with disabilities are able to access mainstream HIV/AIDS programmes and services.
People experiencing disability associated with HIV/AIDS are included in CBR programmes.
Relevant stakeholders are knowledgeable about disability and HIV/AIDS.
Networks and partnerships are created between disability and HIV/AIDS stakeholders.
Key development sectors include people living with HIV/AIDS.
Workplace policies are in place to reduce the risk of CBR personnel becoming HIV-positive and to provide support for those with HIV/AIDS.
National HIV/AIDS policies and plans include people with disabilities.
Key concepts
HIV/AIDS
HIV is the virus that causes AIDS. It can be transmitted through direct contact with the blood or body fluid of someone who is infected with the virus, e.g. people may get HIV infection when they have unprotected sex or share an injection needle with an infected person. Babies can also get HIV before, during or after birth if the mother is infected.
AIDS is the final stage of HIV infection. AIDS affects the body's immune system, making it difficult for the body to fight off diseases. AIDS can result in life-threatening infections, some forms of cancer, and deterioration of the nervous system. Not everyone who is HIV-positive has AIDS – it may be many years before people with HIV get sick with AIDS. Antiretroviral treatment (ART) can help slow down the progress of the HIV virus, but they cannot cure HIV/AIDS. At the moment, prevention is the best and only cure.
People living with HIV/AIDS and disability
Many people living with HIV/AIDS may experience disability. Antiretroviral medications help many people to live longer lives; however, this also means that they live their lives with a chronic condition characterized by cycles of illness and wellness (6). People living with HIV/AIDS may experience a range of temporary or permanent impairments (physical, mental or sensory) which result from treatment or from the progression of HIV. For example, fatigue, digestive problems, skin problems and/or neuropathy (nerve damage) are common side-effects of treatment which may lead to functional problems (difficulties walking, showering, driving) and disability for people living with HIV/AIDS.
Many people living with HIV/AIDS also experience stigma and discrimination. HIV/AIDS is associated with behaviours that are often considered socially unacceptable and are therefore widely stigmatized. People living with HIV/AIDS are frequently subject to discrimination and human rights abuses; many have been thrown out of jobs and homes, rejected by family and friends, and some have even been killed (7).
People with disabilities and HIV/AIDS
Sexuality
Sexuality is the way that people experience and express themselves as sexual beings, and it is an important topic when addressing HIV/AIDS. In many societies, cultural taboos limit the free discussion of sexuality issues and, in particular, many people are uncomfortable discussing them in relation to disability. However, such issues are very real in the lives of many individuals with disabilities and cannot be ignored (8). People with disabilities are often perceived as asexual individuals because they are viewed as being innocent or childlike, are thought to be unable to have intimate relationships, and/or are considered to have fewer sexual needs. However, this is a myth, as many people with disabilities are as sexually active as people without disabilities (9) and therefore they are also at risk of being infected with HIV.
Risk factors
The Global Survey on HIV/AIDS and Disability has shown that almost all known risk factors for HIV/AIDS are increased for people with disabilities (10). Some of these risk factors are as follows.
Illiteracy – Literacy is important for understanding HIV messages and using these messages to change HIV risk behaviours (8). The Education component highlights that people with disabilities generally have lower levels of education than the general population, which suggests that they could be at increased risk of HIV (see Education component).
Limited HIV awareness and knowledge – People with disabilities have low levels of sexual knowledge (9) and are less informed about HIV (11). This may be a result of missing out on HIV education at home and school because of false beliefs about their sexuality and because HIV information and messages are often not presented in accessible formats. For example, when prevention campaigns are conducted only by means of newspapers and billboards, blind people are excluded; when they are only on the radio, deaf people are excluded; and when campaigns use detailed and complex information, people with intellectual impairments may be excluded (3).
BOX 11Mozambique
Acknowledging sexuality
Research conducted in Mozambique on disability and HIV found that one reason people with disabilities are routinely excluded from HIV and AIDS policies and programmes is a refusal or reluctance to regard people with disabilities as sexual beings. The report shows this to be a further dimension of the stigma and discrimination directed towards people with disabilities (12).
HIV risk behaviours – Behaviours, such as unprotected sex, injecting drug use and sex work increase the risk of HIV infection. Research has shown that many people with disabilities also engage in these behaviours (10). Low self-esteem and feelings of being unattractive or undesirable might lead to risky sexual behaviours (9). For example, disabled adolescents are often pressured into sex because of their need for social acceptance and inclusion, and therefore have a limited ability to negotiate safe sex (3).
Sexual abuse – Disabled people around the world are more likely to be victims of sexual abuse and rape than their non-disabled peers (4), which places them at greater risk of HIV infection. Many factors make people with disabilities more vulnerable to abuse, such as their dependence on other people for care, institutional living and lack of access to legal rights (10) (see Social component).
Barriers to HIV/AIDS prevention, treatment, care and support
People with disabilities have limited access to HIV services, e.g. testing and counselling, medication, care and support (10, 13). The barriers that people with disabilities face are similar to those outlined in the Health component, and include the following.
Policy – Because many people think that people with disabilities have a lower quality of life and cannot contribute productively to society (14), it is not unusual for policy-makers to suggest that time, energy and resources should first be given to non-disabled populations (8). Where antiretroviral medications are scarce and services and support are limited, people with disabilities often report being placed last on the list of those entitled to care (2,8).
Environmental and communication barriers – Services offered at clinics, hospitals and in other locations may be physically inaccessible (e.g. they have no ramps for people using wheelchairs), lack sign language facilities or fail to provide information in alternative formats, such as Braille, audio or plain language (5).
Negative attitudes and knowledge of health workers – Many people with disabilities are ridiculed or dismissed by health workers when requesting sexual and reproductive health information (14). In many countries, they report being turned away even when they are able to reach HIV testing centres or AIDS clinics by staff who indicate, incorrectly, that disabled people cannot get HIV/AIDS (8).
Health-seeking behaviour – There are many reasons why people with disabilities might not use HIV/AIDS services: negative attitudes from health workers might make them reluctant to seek help when they are concerned about their sexual health (11); the stigma associated with HIV/AIDS causes secrecy and denial and prevents some people from seeking HIV testing (9); many disabled people rely on family members or friends for support to access health services and may therefore not use those services because they are embarrassed, ashamed or fearful that these people will find out about their HIV/AIDS status.
Impact of HIV/AIDS on families
People with disabilities are affected when family members have HIV/AIDS. As people with disabilities often require assistance from family members for daily activities and have extra medical, educational or rehabilitation needs, they may be neglected where there is a loss of family income, resources and time due to HIV/AIDS. It has been estimated that 4–5% of children who have lost one or both parents to AIDS also have disabilities (5). In these situations, they are more likely to be malnourished, neglected, placed in institutions or abandoned (10). Children with disabilities who are also HIV-positive are also more likely to experience exclusion and discrimination in all areas, particularly in the field of education (5).
Reaching disabled populations
Inclusion of people with disabilities in HIV/AIDS programmes and services
Many disabled people may not be included in mainstream HIV/AIDS programmes and services because it is often believed that is it too expensive or too difficult. However, there are many ways in which CBR programmes, disabled people's organizations, HIV/AIDS advocates, educators and policy-makers can support their inclusion. Many practical ideas are provided under Suggested activities but, in general, these involve the following:
facilitating access to mainstream HIV/AIDS programmes and services which target the general population;
adapting mainstream HIV/AIDS programmes and services to enable inclusion and participation;
developing and implementing disability-specific interventions for people who cannot be reached by mainstream HIV/AIDS programmes and services.
It is important to remember that combinations of these measures will be required to reach all people with disabilities.
Rehabilitation
Rehabilitation becomes increasingly important for people who may be experiencing disability as a result of HIV/AIDS. Rehabilitation related to HIV/AIDS can slow down deterioration and enable people to achieve and maintain independence (5). Rehabilitation will not be covered in detail here as it is addressed in the Health component; however, it is important to understand that, at the community level, CBR can play a key role in addressing the functional problems that people living with HIV/AIDS may experience. In addition, it is important to consider other support and other aspects of rehabilitation, e.g. vocational rehabilitation, which may help a person with HIV-related disability to maintain a healthy and productive lifestyle.
Suggested activities
Facilitate access to HIV prevention, treatment, care and support
CBR should work towards addressing the barriers that limit the full participation of people with disabilities in HIV/AIDS prevention, treatment, care and support in the following ways:
making people with disabilities and their family members aware of the HIV/AIDS programmes and services being offered in their communities and making sure that they are aware that they have a right to attend;
ensuring HIV/AIDS programmes and services are physically accessible, e.g. CBR programmes can encourage HIV/AIDS programmes and services to move to accessible meeting places or provide advice and assistance regarding adaptations;
encouraging HIV/AIDS programmes and services to show disabled people in posters, billboards or other materials designed for the general public, e.g. showing a wheelchair user or a blind person with a cane alongside people without disabilities;
working together with disabled people's organizations to advise HIV/AIDS programmes and services on ways of making simple adaptations to their interventions to ensure that messages are understood by people with disabilities, e.g. passing condoms around during education sessions so that blind participants can feel what they are like and how they work;
giving information and education materials on HIV/AIDS to people with disabilities who are at risk, to ensure they are being reached;
working together with disabled people's organizations to advise HIV/AIDS programmes and services on ways of adapting existing materials to make them accessible, e.g. deaf people may require text captioning or sign language interpretation, blind people may require Braille or tapes, people with intellectual impairment may require pictures;
working together with disabled people's organizations to develop new programmes, services and materials for people with disabilities who cannot be reached by those designed for the general population, e.g. developing education sessions specifically for people with disabilities;
providing practical assistance, e.g. transport, to improve access for people with disabilities and their families to mainstream services;
ensuring people with disabilities and their families are provided with appropriate follow-up, e.g. treatment, care and support, after becoming aware of their HIV-positive status.
BOX 12Uganda
A young woman manages HIV with timely help
In Uganda, a young woman who was deaf had a sexual relationship with a HIV-positive man. She became pregnant, and the man took no responsibility for the relationship or the child. Family members became concerned that she might have contracted HIV, and took her to an HIV/AIDS counsellor. She tested positive, and arrangements were made for her to receive antiretroviral drugs. Now she and her baby (who did not test positive) are doing well; she takes her medication regularly, is working and is also helping out at home. Her family now encourages other families with disabled family members to access HIV/AIDS information and services.
Include people living with HIV/AIDS in CBR programmes
As CBR communicates a strong message of inclusion, programmes should address the needs of people living with HIV/AIDS who may experience disability. Some people living with HIV/AIDS may require access to specialized services, such as rehabilitation and assistive devices. CBR can facilitate this.
Build capacity
A number of different stakeholders can benefit from capacity-building, including people with disabilities and their family members, CBR personnel, disabled people's organizations, health workers and members of the community. CBR programmes can take the following actions:
promote activities and support initiatives that strengthen the roles of women in decision-making about HIV and disability in communities;
ensure that people who provide support and assistance for people with disabilities and HIV/AIDS (e.g. family members) receive adequate training and support;
strengthen their own programmes to ensure that HIV/AIDS and related issues, such as sexuality, reproductive health and sexual abuse are addressed and, where necessary, provide additional training for CBR personnel;
involve disabled people's organizations and people with disabilities in HIV/AIDS activities, e.g. people with disabilities could be trained as HIV/AIDS educators for their communities or for particular groups of people with disabilities;
in partnership with disabled people's organizations, train HIV/AIDS educators, outreach workers and health personnel about disability issues;
educate community and religious leaders about disability and HIV/AIDS issues, and encourage them to take action to challenge negative attitudes and promote inclusion in their communities;
educate people involved in law enforcement, e.g. police officers, lawyers and judges, about disability and HIV/AIDS issues and the need to protect the safety and human rights of people with disabilities.
BOX 13
HIV programmes by the deaf community
In some countries, local deaf groups run HIV prevention programmes. These programmes raise awareness among the deaf community and teach safer lifestyle practices. They also bring greater awareness to HIV organizations and government programmes about the need to broaden the ways in which HIV information is communicated to the public.
Create networks and partnerships
Because of the relationship between disability and HIV/AIDS (i.e. people with disabilities are at risk of HIV/AIDS and people living with HIV/AIDS may experience disability), strong networks and partnerships need to be built between disability and HIV/AIDS stakeholders. It is suggested that CBR programmes should take the following actions:
attend events and meetings in the community on HIV/AIDS to ensure that disability issues are considered; equally, CBR programmes can invite representatives from the HIV/AIDS community to events and meetings on disability;
work closely with disabled people's organizations, where available, to develop local strategies to reach people with disabilities with HIV/AIDS information and education, identify training needs in the community and educate HIV/AIDS workers about disability;
share the disability and rehabilitation expertise of CBR programmes with HIV/AIDS networks by providing education and training about disability and the benefits of rehabilitation and raising awareness that people with disabilities are also at risk of HIV;
invite HIV/AIDS programmes and services to share their specialist skills and knowledge with CBR programmes and disabled people's organizations to help them respond to the needs of their staff, members and clients;
set up referral systems between CBR programmes and HIV/AIDS programmes.
Promote a multisectoral approach
Both disability and HIV/AIDS are development issues. They share many common links, including poverty, stigma and discrimination, violence and other inequalities, such as reduced access to education and opportunities for making a living. Therefore, it is important that CBR programmes consider the involvement of all sectors when developing strategies to address both disability and HIV/AIDS. A review of the Health, Education, Livelihood, Social and Empowerment components will provide a comprehensive overview of suggested activities, some of which are to:
Implement workplace HIV/AIDS policies
HIV/AIDS is a workplace issue; in many countries, CBR personnel and their family members may be at risk of or affected by HIV/AIDS. Therefore CBR programmes should have appropriate workplace policies in place to:
minimize the possibility that CBR personnel become infected with HIV;
ensure that CBR workers who have HIV, or are affected because family members have HIV/AIDS, are well supported;
eliminate any stigma and discrimination that may be present in the workplace.
HIV/AIDS policy should cover the following areas: protection of the rights of those affected by HIV/AIDS; prevention through information, education and training; and care and support for workers and their families (15).
Promote inclusive national policies and programming
As people with disabilities are often left out of HIV/AIDS policies and programming, CBR programmes should join with other groups to advocate and lobby for change. For example, the Africa Campaign on Disability and HIV and AIDS, launched in 2007, is a unifying umbrella organization under which disabled people's organizations, organizations of people living with HIV/AIDS, nongovernmental organizations, HIV and AIDS services, researchers, activists and other citizens work collectively to promote equal access to HIV programmes and full participation in AIDS policies and strategic plans for people with disabilities (16).
BOX 14South Africa
New milestones
South Africa first included disabled people in the National AIDS strategic plan in 2007–2009. This was prompted by a combination of leadership from champions within the Government, the strong organization of the disability sector and self-representation in the South African National AIDS Council (5).
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