1. 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
CRPD
9-11 June 2015, United Nations, New York
Prepared by Nduka Uzor

2. 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

3. 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

4. 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.

5. 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)

6. 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)

7. 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

8. 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.

9. 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

10. 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

11. HIV-Prevalence of at Risk
Populations in South Africa
Source: South African National HIV Prevalence, Incidence, Behaviour and Communication
Survey, 2008
0
5
10
15
20
25
30
35

12. 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

13. 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

14. 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

15. 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.

16. AWARENESS INTERVENTION
PROGRAMS

17. 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

18. •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

19. • 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

20.  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

21. 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.

22. 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

23. 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)

24. 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

25. Thank
You