Press Release: From the Disability and HIV Task Team

July 21, 2010

PRESS RELEASE: From the disability and HIV task team

Press Conference: July 21 from 17.00-17.45 

 Disability, a new field in HIV and AIDS programming

It is estimated that 650 million people, or 10% of the world’s population, have a disability, many of them living in resource-poor settings with limited access to HIV prevention, treatment, care and support. Few HIV prevalence studies include people with disabilities. Those that do, indicate that people with disabilities are as likely or more likely to have been infected with HIV.

People with disabilities are found among all the key populations at higher risk of exposure to HIV. Contrary to common myth, they are sexually active and as likely to be involved in other ‘at risk’ behaviours, such as exposure to drugs and alcohol as any other group, yet they have limited access to HIV prevention efforts and are at heightened risk of sexual abuse and exploitation.  Should they become infected, they are less likely to receive needed medical, social and economic supports.

In addition, people living with HIV may develop impairments in the course of their illness, yet rehabilitative services are not generally geared to this increased need, and little has been done to link people newly impaired by HIV to the disability advocacy groups and NGOs who could share with them already established knowledge and skills on living with a disability.

Having signed the new UN Convention on the Rights of Persons with Disabilities (2008), many States have committed themselves to including disability in their programmes and, in particular, to protecting the rights of persons with disabilities. This right to inclusion still needs to be implemented in HIV and AIDS programmes.

Here in Vienna, a series of sessions and events will bring attention to the impact of HIV on persons with disabilities around the world and the need for the inclusion of persons with disabilities in any and all HIV outreach efforts.

The IDDC Disability and HIV Task Group is presenting initiatives from several research organisations and NGOs at the disability networking zone “Accessibility, Inclusion, Disability and Sexuality” in the Global Village – and conference participants are invited to stop by throughout the conference to speak to disability advocates and researchers who will be manning the booth and to pick up information on a series of presentations, papers and discussions relating to HIV and disability at the conference.

Disability is also present in the official program of the Conference: the Global Partnership for Disability and Development (GPDD) and Health Canada, are co-organizing a satellite event “AIDS and Disability-Country-level Perspectives” in collaboration with UNAIDS and the World Bank on July 21st (18:30-20:30). This opportunity will be used to widely disseminate information on the intersection of disability and HIV and AIDS, good practices in developing inclusive HIV and AIDS programs, and generally raise awareness among conference attendees and practitioners on the need to mainstream disability in their work.


Contact Details: 

Jessica de Ruijter                   j.deruijter@vso.nl (VSO, Nederlands)

Dr. Wanjiru Mukoma              wmukoma@liverpoolvct.org (Liverpool VCT, Kenya)

Dr. Jill Hanass-Hancock         hanasshj@ukzn.ac.za  (HEARD, South Africa)

Nora Ellen Groce                    nora.groce@ucl.ac.uk (University College London, UK)

Dr Simon Rackstraw              simon.rackstraw@mildmay.org (Mildmay UK)

  

Disability, a new field in HIV and AIDS programming

 

1.            A background on disability

It is estimated 650 million people, or 10% of the world’s population, have a disability [1], yet many of those have only limited access to health services including HIV programming. Internationally, disability is recognised as an “evolving concept” and the UN Convention on the Rights of Persons with Disabilities states that “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others” (Article 1)[2]. Disability is, therefore, not only caused through impairment but also the environment which does not provide equal access to health, education and judicial services as well as employment and recreation. This increases vulnerability to a number of issues including HIV and AIDS.

2.            Interrelation of disability and HIV

The fact that HIV and AIDS affects people with disabilities has only been given attention in recent years [3, 4]. Researches and advocates have argued that this neglect is based on the assumption that people with disabilities are not at high risk for HIV infection because they are asexual, do not use drugs and are not in danger of sexual exploitation or abuse [3, 5, 6]. However, in 2009 UNAIDS recognised people with disabilities among the key population at higher risk of exposure to of HIV [7]. In general, marginalised and stigmatised communities with limited access to their basic human rights are seen at higher risk of HIV infection and they feel the impact of HIV and AIDS more significantly [8]. The vulnerability of people with disabilities to HIV and AIDS is in keeping with this general recognition. Research indicates that people with disabilities have higher levels of illiteracy, unemployment and poverty. In addition they are at increased risk of sexual abuse and assault, factors generally linked to vulnerability to HIV [9, 10].

In addition the few prevalence studies that are available confirm this claim. The recently released South Africa national prevalence study from the Human Science and Research Council (HSRC) revealed that at 14.1%, HIV prevalence was higher among people with disabilities than the national average which lay around 10.6% [11]. In the same study, the group of people with disabilities also showed higher prevalence rates than other key populations such as men who have sex with men. Studies in other African countries on the deaf population similarly indicate that deaf people are as likely (Kenya), if not twice as likely (Cameroon) to be infected with HIV as the general population [12, 13].

Yet people with disabilities have often been ignored in HIV interventions that provide prevention, treatment, care, support and impact mitigation. In addition to myths about their behaviour and life experiences, the failure to distinguish between the different needs of different impairments, the inaccessibility of health information and services, insufficient training and negative attitudes of health professionals, as well as the social isolation of people with disabilities has all had a negative impact on their ability to access HIV-related health care [3]. This further increases the vulnerability of people with disabilities to HIV infection and also increases the impact of HIV and AIDS on their lives once infected or affected by HIV and AIDS.

Furthermore, it has been suggested that HIV and AIDS may cause long term and episodic disabilities and services need to be prepared for this extra need for rehabilitation [14, 15]. PLHIV may develop disabilities such as mental health problems, physical disabilities, deafness or blindness during the course of their life [14-17]. Health systems have to provide for these conditions, through providing devices for assistance, rehabilitation, psycho-social support and disability grants.

3.            The UN Convention on the Rights of Persons with Disabilities (CRPD)

The CRPD requires states to ensure that national legislation complies with the understanding that disability is not only a medical but also a social phenomenon. The convention, which has been signed by many countries [2], stresses that services need to be offered with a “universal design” and that where this is not possible people with disabilities have to be “reasonably accommodated”.  Building ramps in a school or hospital or mobile VCT clinics in tents are examples of universal design. In addition to this, “reasonable accommodation means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others…” [2]. Providing a wheelchair, HIV-information in Braille, a sign interpreter in a VCT centre and simplified sexuality and HIV education for people with intellectual disabilities are such adaptations.

4.            Ways forward

In relation to making HIV programming accessible to people with disabilities as well as making rehabilitative services available for people living with HIV, change needs to be implemented on three levels. First legal frameworks have to be adopted to protect the rights of persons with disabilities in relation to accessing health, legal protection, education and employment. Secondly national strategic frameworks to combat HIV and AIDS have to become inclusive of disability issues in all priority areas. Thirdly programmes have to come up with sustainable ways of implementation. Within the Health System certain adaptations will have to be made, some requiring less and some more resources. Adaptations that ensure a Universal Design such as building ramps usually require little financial resources, while others, in particular those that ensure reasonable accommodation of people with disabilities such as providing information in Braille or sign interpreters within a clinic, might take substantial resources and these costs need to be budgeted for within national frameworks.

 

For more information on disability and HIV view:

IDDC website:  http://www.iddcconsortium.net 

HEARD resource centre: www.heard.org.za/african-leadership/disability

Africa Campaign on Disability and HIV & AIDS: http://www.africacampaign.info

AIDS-Free-World: http://www.aids-freeworld.org/content/view/114/66

UNESCO: http://www.unescobkk.org/education/hivaids/hivaidsclearinghouse/resource-materials-by-topic/hiv-and-disabilities

Mildmay (info on HIV-related neurocognitive impairment): www.mildmay.org/uk-care.aspx
References

 

1. Mont, D., Measuring Disability Prevalence, in Discussion Paper NO. 0706. 2007, The World Bank: Geneva.

2. United Nations, UN Convention on the Rights of Persons with Disabilities, UN, Editor. 2008.

3. Groce, N.E. Global Survey on HIV/AIDS and Disability.  2004  [cited 2004 01.09.]; Available from: http://cira.med.yale.edu/globalsurvey.

4. Hanass-Hancock, J. and S. Nixon, The Fields of HIV and Disability: Past, Present and Future. Journal of the International AIDS Society, 2009. 12(28): p. http://www.jiasociety.org/series/hiv_aids_and_disability.

5. Groce, N.E., HIV/AIDS and People with Disability. Lancet, 2003. 361: p. 1401-1402.

6. Hanass-Hancock, J., Disability and HIV/AIDS - A Systematic Review of Literature in Africa. Journal of the International AIDS Society, 2009. 12(34): p. http://www.jiasociety.org/series/hiv_aids_and_disability

7. UNAIDS, Disability and HIV Policy Brief, UNAIDS, Editor. 2009.

8. UNAIDS / OHCHR, International Guidelines on HIV/AIDS and Human Rights: 2006 Consolidated Version. 2006, UNAIDS: Geneva.

9. Groce, N.E. and R. Trasi, Rape of individuals with disability: AIDS and the folk belief of virgin cleansing. The Lancet, 2004. 363: p. 1663-1664.

10. CASS Centre for Approved Sociel Science and M. Rekopantswe, Understanding the livelihoods of children with disabilities and their families in Zimbabwe. 2007, UNICEF.

11. Shisana, O., et al., South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2008: A Turning Tide among Teenagers? 2009, HSRC Press: Cape Town.

12. Taegtmeyer, M., et al., Responding to the Signs: A Voluntary Counselling and Testing Programme for the Deaf in Kenya, in XVI World AIDS conference, Toronto. 2006: Toronto.

13. Touko, A., Mboua, Célestin P, Tohmuntain, Peter M, Perrot, Anne B, Sexual vulnerability and HIV seroprevalence among the deaf and hearing impaired in Cameroon. J2010. Journal of the International AIDS Society 2010. 13(5): p. http://www.jiasociety.org/series/hiv_aids_and_disability.

14. Myezwa, H., et al., Assessment of HIV-positive In-Patients using the International Classification of Functioning, Disability and Health (ICF), at Chris Hani Baragwanath Hospital, Johannesburg. African Journal of AIDS Research, 2009. 8(1): p. 93-106.

15. O'Brien, K.K., et al., Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS. Journal of the International AIDS Society, 2009. 12(30): p. http://www.jiasociety.org/series/hiv_aids_and_disability.

16. Smart, T., Mental health and HIV: a clinical review. HIV & AIDS Treatment in Practice, 2009. 145: p. 1-22.

17. Hanass-Hancock, J. and S. Nixon, HIV, Disabilty and Rehabilitation. Consideration for Policy and Practice. Issue Brief. 2010, Health Economics and HIV/AIDS Research Division (HEARD): Durban.