Increasing Awareness and Knowledge about

HIV and Disability Program

Integration and Dissemination of Information on On-going Programmes, Opportunities And Challenges

By Society for Development and Community Empowerment (SDCE) @ 8th session of the Conference of States Parties to the

CRPD9-11 June 2015, United Nations, New York

Prepared by Nduka Uzor

 

Imagine this!“Deaf blind women are always stigmatized by the community around us because of our disability, they abuse me and call me “Muzibe/Kasiru”, as someone difficult to communicate to, I got a man who has always pregnant me and neglected me because of the influence of the community. He always comes at night, pregnant me and leaves me with the responsibility of feeding my five children his work is to produce and leave me with the burden without help.” Muzibe is a derogatory word connoting someone who is blind and can’t see anything while “Kasiru” carries a meaning of someone who is stupid and useless”.…Aisha Masaka

In this Presentation Context Key facts What is disability Why People with Disabilities at increased risk

of HIV infection HIV related disability Intersection between HIV and disability Human angle stories of people with disabilities What awareness programs should focus on Other Steps

Context Individuals with disabilities are often assumed to be at

lower risk, and thus face lower of HIV infection rates, than their non-disabled peers. They are believed to be asexual, less likely to use drugs or alcohol, and at a lower risk of violence or sexual assault than the general population.

Research shows that these assumptions are wrong—the HIV infection rate among people with disabilities is up to three times as high as people without disabilities.

According to the United Nations, at least one in every ten people—660 million individuals—live with a disability significant enough to make a difference in their daily lives.

Facts 15% of the world’s population lives with a

disability (19% among female population); 2-3% lives with severe disabilities (WHO/WB, 2011)

5-10% of all children in Africa grow up with disabilities (UNICEF, 2013)

People with disabilities make up 20% of the poorest in the world (UN, 2011)

The prevalence of violence against people with disabilities is 1.3 times higher than that in the general population (Lancet, 2012)

Children with disabilities are 3.7 times more affected by all forms of violence than their non-disabled peers (Lancet, 2012)

Facts People with physical, intellectual, mental or sensory

disabilities are as likely, if not more likely, to be at risk of HIV infection (Groce, 2004; UNAIDS/WHO/OHCHR, 2009)

Women and girls with disabilities in particular are often at increased risk of HIV as a result of their increased exposure to sexual violence (Enarson, 2009)

Few available HIV prevalence studies among people with disabilities show similar or higher prevalence than national averages in South Africa, Kenya, Cameroon and Senegal (IDDC, 2012)

PLHIV are also at risk of developing disabilities on a permanent or episodic basis as a result of their illness and/or side effects of ARV (Hanass-Hancock & Nixon, 2010; O’Brien et al, 2008)

What is Disability? Convention on the Rights of Persons with Disabilities

(2007):defines disability “… disability is an evolving concept and results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others ...”

The medical model sees disability as the dysfunction or impairment of an individual

The social model of disability asserts that the impairment itself is not an obstacle for the disabled individual, but is a socially-created problem and demands a political and social response

What is Disability?

Disability results from an interaction between a non-inclusive society and individuals:• Person using a wheelchair might have difficulties gaining

employment not because of the wheelchair, but because there are environmental barriers such as inaccessible buses or staircases which impede access

• Person with extreme near-sightedness who does not have access to corrective lenses may not be able to perform daily tasks. This same person with prescription eyeglasses would be able to perform all tasks without problems.

Now, when a person is disabled and is also HIV/AIDS positive, I leave it to your own judgment especially in Africa where stigma and discrimination on people living with HIV is high

Why People with Disabilities are at increased risk of HIV infection Lack of access to education- in particular sexuality

education Increased risk of sexual abuse and exploitation Potential of increased risky behavior Lack of access to health services Increased likelihood of living in poverty Lack of application of national laws and policies

supposed to protect and promote rights Lack of knowledge/skills from service providers

HIV-Prevalence of at Risk Populations in South AfricaSource: South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008

0

5

10

15

20

25

30

35

HIV Related Disability

1. Strong link between HIV and mental health (e.g. depression anxiety)

2. Scattered evidence that HIV, its opportunistic infections, and treatment may be related to other co-morbidities that lead to episodic or permanent impairment and disability e.g.:

• Symptoms such as pain, fatigue, emotional challenges, skin irritations, visual impairments etc.

• Health conditions such as HIV-dementia and peripheral neuropathy• Activity limitations particularly related to work, mobility, personal

hygiene and domestic activities• Participation restrictions, stigma and discrimination

Interrelationship of Disability and HIV

People with disabilities and/or

mental health problems

PLHIV who experience disability

People who care for PLHIV or other

dependents

• increased risky behaviour• increased risk of sexual abuse and less access to justice• negative attitudes

from health care staff• problems with accessing health services and education• can affect adherence

• mental health disorders

e.g. depression, schizophrenia, anxiety, substance abuse …• neurocognitive disorders...• sensory impairments

(visual, hearing, touch)• problems with the digestive system• problems with sexual functions• episodic disabilities • stigma,

discrimination ?

• AIDS related activity limitation is associated with increased child healthcare tasks, lower school attendance, food insecurity and educational outcomes• the interrelationship

between increased care-giving burden and disability is exacerbated in the context of HIV

Stories

“I know a family in one community where men take advantage of a girl in this situation, and always make her pregnant when family members don’t know because she cannot shout for help. One wonders who pregnant her every time and the family takes care of the children. May be the person is a family member.”Agnes

Stories

Women and girls with disabilities, especially those with visual impairment are denied justice by the evidence act in some countries that only allows evidence by seeing and not hearing or feeling.

A case in point is one from a town in Central Uganda which an acid was poured on a girl by her friend. When the case was taken to court, she requested the magistrate to give her evidence by identifying the culprit through feeling and hearing the voice which the magistrate rejected. The magistrate’s argument was that there was no evidence law which accepted identification of the suspect by hearing or feeling.

The suspect was then set free and the girl is blind to date.

AWARENESS INTERVENTION PROGRAMS

Advocacies to ratify and incorporate into national law instruments that protect and promote the human rights of persons with disabilities, including the Convention on the Rights of Persons with Disabilities (CRPD)

• Incorporate the human rights and needs of persons with disabilities into national HIV strategic plans and policies

• Provide persons with disabilities with the same range and quality of affordable HIV, sexual and reproductive health services as the rest of the population

• Involve persons with disabilities in the planning, implementation and evaluation of HIV programmes, including national AIDS authorities

Targeting the Governments

•Ensure HIV policies, guidelines and programmes are designed and implemented to be accessible to all persons with disabilities, and make it mandatory that all HIV programmes incorporate access to information, support and services for persons with disabilities.

• Develop, validate and support the use of impairment-specific and disaggregated indicators in the national AIDS monitoring and evaluation system.

• Promote and fund research on HIV and disability, ensuring that persons with disabilities are included on the research team designing, implementing and analysing the research.

Actions for International Partners

• Increase networking and information exchange between HIV and disability service, disability advocacy and human rights organizations.

• Ensure disability services, such as support for independent living, are available to people living with HIV.

• Advocate for persons with disabilities to have full sexual and reproductive rights, and freedom from physical and sexual abuse.

• Ensure campaigns to combat stigma and discrimination of persons who are HIV-positive are accessible to persons with disabilities.

•Design programs that target issues on HIV and disability with the mass media

Actions for Civil Society

Support the integration of disability in National Strategic Frameworks and Plans

Continue advocacy on issue at regional and global fora.

Support mechanisms for data collection as part of UNGASS

Strengthen networks working on disability and AIDS

Integrate human rights organizations not previously working on HIV and disability Assist DPOs to be part of AIDS committees and influence their strategic plans

Facilitate networking between disability and HIV at grassroots levels

Possible Next Steps

Possible Next Steps

Facilitate networking between disability and HIV at grassroots level

Coalition and partnership building at horizontal and vertical levels

Maintain a network – to share experiences, tools and materials

Bridge gap between academics and activists

Identify support to address the data challenge

Engage the private sector in AIDS and disability fora.

References

Handicap International « Ask Source » resources site: http://www.asksource.info

Canadian Working Group on HIV and Réhabilitation: http://www.hivandrehab.ca/EN/index.php

UNAIDS: http://data.unaids.org/Publications/IRC-pub07/jc1252-internguidelines_en.pdf

UN Enable: http://www.un.org/disabilities/default.asp?id=1560

HEARD Resource Centre: http://www.heard.org.za/african-leadership/disability

Other Resources UN Convention Document on the Rights of Persons

with Disabilities (CRPD) (2007) biding international tool (article 9 on accessibility and 25 on health (including HIV/SRH)

WHO/UNFPA Guidance on promoting SRH for persons with disabilities (2009)

UNAIDS/WHO/OHCHR Policy Brief on Disability and HIV (2009)

WHO/WB World Report on Disability (2011) how to not miss 1 billion people!

UN HLM Declaration with specific references on disability/people with disabilities (2011)

Breaking the silence; Positive Nation Magazine: A publication of Centre for HIV/AIDS and STD Research (CHISTRE) (2006)

Prepared by Nduka Ozor Project Director,Centre For HIV/AIDS

and STD Research 21 Warehouse Road Apapa Lagos Nigeria +234 1 2708937,+234 8035719595 chistre@yahoo.com www.chistre.org

Thank You