Disability and HIV, a deadly embrace

Lovemore Rambiyawo Correspondent
It is official: people with disabilities are disproportionately exposed to HIV than the generality of the populace.

A meta-analysis on HIV prevalence among adults with disabilities in Sub-Sahara Africa (De Beaudrap et al, 2014), shows that there is a gradient in the risk of HIV infection according to gender and disability status, with a risk increasing from 1,48 for men with disabilities to 2,21 in women with disabilities when compared to non-disabled people.

PWDs also have higher rates of infant mortality.

The findings emanate from a systematic review and a meta-analysis of the risk of HIV infection among adults with disabilities in Sub-Saharan Africa.

The findings puts paid to the oft-quoted notion that people with disabilities are not sexually active or asexual – they are just as sexually active as the next person without a disability.

At a global level, the Global Fund’s Human Rights on HIV, TB, Malaria and Health System Strengthening information Note (2014) includes PWDs in the partial list of key populations at risk of HIV.

Critically, the Global Fund Information Note sets out three key steps for integrating human rights in Global Fund programmes: Identify who is at risk of HIV, TB or malaria, who has the disease, and what activities are needed to address human rights barriers and effectively reach those populations; design all disease programmes using a human rights-based approach; and invest in a package of services to remove human rights barriers to access, including community system strengthening.

PWDs are manifestly at great risk of HIV, TB and malaria; they need a holistic and integrated range of prevention, treatment, support and care and physical accessibility services to address the multifaceted and interconnected human rights barriers they face in accessing health, designed using a rights based approach and also encompassing disability mainstreaming and community systems strengthening.

The perception of PWDs as asexual beings by medical personnel, care givers and the generality of society and resultant stereotyping and ignoring of their sexuality, results in them being subjected to attitudinal, physical, economic and informational barriers to accessing sexual healthcare.

Incidences of women and men with disabilities being ridiculed and taunted by medical personnel when seeking Sexual and Reproductive Health (SRH) services, especially Anti-Retroviral Therapy (ART) at clinics and hospitals, are rampant.

Physical barriers, including inaccessibility of medical facilities (lack of ramps, elevators etc.), distant medical facilities, lack of disability friendly infrastructure in clinics/hospitals; lack of suitable transportations; informational barriers (e.g. lack of information material in Braille, large print, simple language, and pictures; lack of sign language interpreters); providers’ lack of knowledge and skills about PWDs; and lack of coordination among health care providers combine to push SRH and HIV services out of the reach of PWDs.

The 1,3 million women with disabilities (WWDs) in Zimbabwe bear the brunt of this social exclusion in SRH interventions; over 500 00 WWDs in the 15-49 age group are uniquely affected.

WWDs experience major psycho-social problems that remain largely neglected, including depression, stress, lowered self-esteem, and social isolation.

Drugs taken to manage their conditions interact negatively with contraception.

Girls and women with visual impairment are at high risk of being raped and abused with impunity due to their inability to identify the perpetrator; girls and women with hearing impairments due to their inability to communicate with medical personnel, law enforcers and the generality of society; and women with mental impairments due to their cognitive impairments which often prevent them to perceive the gravity of the crime or that a crime had actually occurred.

Schoolgirls with mental challenges are often put on Depo Provera without their consent to prevent unwanted pregnancies.

These factors significantly increase the chances of these sections of the population to acquire HIV and resultantly be disproportionately exposed to stigma and discrimination.

Still at a global level, the UNAIDS Gap report (2014), which devotes a whole chapter to disability, recognises that PWDs are stigmatised and at increased risk of exposure to HIV due to lack of access to education, in particular sexuality/sexual health education.

They have an increased risk to sexual violence and exploitation; potential of increased risk behaviours due to illiteracy; lack of access to inclusive health products and services and increased likelihood of living in poverty and sinking deeper into poverty as a result of generalised social exclusion.

Such people suffer stigma, prejudices, harmful practices, misconceptions and negative attitudes from family, community and society; and lack of application of national laws and policies supposed to protect and promote rights.

Research also indicates that people living with HIV (PLHIV) are 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).

Evidence abounds in Zimbabwe of PLHIV who have become visually impaired (blind) and/or succumbed to degenerative musculoskeletal impairments as a result of their HIV positivity and/or side effects of ARVs.

Contributory evidence from complementary research indicates that 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 PWDs show similar or higher prevalence than national averages in South Africa, Kenya, Cameroon and Senegal (IDDC, 2012).

To exacerbate the situation of PWDs, the World Report on Disability (2011) notes that PWDs suffer from unprecedented discrimination from health care providers.

This prevents them from accessing critical health services, including HIV and AIDS service delivery.

It also notes that PWDs are manifestly suffer from increased risk to health risk behaviours due to a multiplicity of mutually-reinforcing health risk factors.

The disability fraternity in Zimbabwe, which had been smarting from decades of social exclusion in HIV programming, heaved a collective sigh of relief when, for the first time in the history of mainstream HIV interventions, people with disabilities became involved in a Global Fund programme running under the theme “Addressing Critical Gaps in HIV and Aids Prevention, Treatment, Care and Support in Zimbabwe”.

The innovative disability project, which was coordinated by the national disability umbrella body in partnership with four of its member organisations, trained 1 700 people with disabilities in HIV prevention, treatment, care and support and in HIV and Aids counselling in 30 districts of the country’s 10 provinces from January 2014 to December 2017.

Twenty-two support groups were formed in 22 districts.

The objectives of the support groups are: to improve the psychosocial well-being of PWDs and their families affected and infected by HIV/AIDS as measured by the level of awareness of personal and community issues regarding positive behaviour change.

They also aim at enhancing emotional functioning, livelihood, coping, self-esteem, and self-efficacy and improve the social economic status of PWDs and their families through the initiation and implementation of Income Generating Activities.

The support groups intent to improve the HIV and AIDS counselling skills of trained PWD counsellors through availing them opportunities for attachment in New Start Centres, clinics and hospitals in the district, thus availing them better access HIV/AIDS prevention, care, treatment and support services.

While PWDs appreciate their inclusion in HIV interventions, the general feeling is that the approach to disability inclusion has been ad hoc, piecemeal and reactive, whereas disability inclusion calls for a holistic and integrated approach that addresses the interconnectedness of disability problems in the critical arena of health.

As Zimbabwe moves to close the tap on HIV, there is a dire need to concomitantly close the gap between people with disabilities, who are being left behind in the country’s national response to HIV.

 

Lovemore Rambiyawo, who is physically-impaired, is acting executive director of National Association of Societies for the Care of the Handicapped (NASCOH), an umbrella body to 70 disability organisations in Zimbabwe. The writer can be reached at: [email protected]

 

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