Malawi’s double blow: deaf-blind population cries for inclusive HIV programmes

About 25,000 people in Malawi’s deaf and blind communities are ignored by HIV programmes, and they’re crying out for inclusion.

About 25,000 people in Malawi’s deaf and blind communities are ignored by HIV programmes, and they’re crying out for inclusion.

Since the first HIV case was discovered at Kamuzu Central Hospital in the capital Lilongwe in 1985, Malawi has made some strides in the fight against the pandemic. The national HIV prevalence rate was 24 per cent in 1998 and had been reduced to 10.6 per cent by 2010, according to a Malawi Demographic Health Survey.

However, the country is yet to provide safe sex strategies to prevent people with disabilities from contracting the virus.

“In Malawi, information has not been packaged in formats that are easily accessible,” said Ezekiel Kumwenda, president of the African Federation of the Deaf-Blind. “Don’t leave the disabled behind. How can condoms be used by people who cannot see and hear? Why don’t manufacturers put expiry dates on condom packages in Braille? If you have to ask someone else to read the expiry date for you, then it means you have no privacy.”

The deaf-blind need HIV information

Kumwenda, who is blind and is also the executive director of Malawi Union of the Blind, said that the HIV and AIDS crisis in Malawi cannot be addressed successfully unless individuals with disabilities are also included in the national response to HIV.

“To make HIV and AIDS prevention and other related information easily accessible, it must be translated into Braille and tactile sign language for the deaf,” he explained.

According to the National AIDS Commission’s annual work plan for the period July 2012-June 2013, over one million informational, educational and communication materials were produced.

The report further indicates that over 800 interactive outreach audiovisual shows were also carried out and that about 30 million free condoms were distributed, of which 4 per cent were female condoms. But none of the shows or sheaths was designed for people living with disabilities.

This inadequacy of information means that deaf-blind people have extremely limited knowledge of how to prevent getting infected with HIV, how to live with HIV and AIDS, or how to care for others infected and affected by the virus.

Programmes should help everyone

The fact that the deaf-blind have not been included in mainstream HIV-prevention interventions – such as behavior-change programmes or care and support – means that critical gaps remain in the country’s fight against the pandemic, in spite of the impressive gains among the general population.

This gap creates an unfortunate window through which the country may find that the gains are reversed. “If we are to continue making strides in the fight against the pandemic, all HIV and AIDS programmes should target all sections of society,” Kumwenda said.

Kumwenda explained that the deaf-blind should not only receive HIV information and services but also be trained as peer educators and advocates to better serve their communities.

Advocating for the rights of people with disabilities

The Visual Hearing Impairment Membership Association (VIHEMA), an organization that advocates for the rights and needs of deaf-blind people in Malawi, is trying to develop programmes to plug the existing gaps between HIV interventions and people living with disabilities.

According to VIHEMA programmes coordinator Martha Momba, her organization filed a proposal and request for a grant from Global Fund, which in Malawi is overseen by the National AIDS Commission.

“The proposal was aimed at contributing to the overall goal of reducing HIV and AIDS incidence among people with deaf-blindness in Malawi. Unfortunately, it has been rejected,” she said.

Project targeting women shelved

The project would have, among other things, made special efforts to reach deaf-blind women and girls with information on HIV prevention, gender-based violence, and sexual and reproductive health, particularly through peer education.

Eventually, the women and girls would learn negotiation skills for safer sex and other life skills, making them less likely to tolerate violent or abusive relationships and even more likely to report gender-based violence.

The proposed project was developed after VIHEMA’s membership observed the widening gap between themselves and their sighted counterparts across all pillars, including advocacy, prevention, treatment, and research.

The World Health Organization (WHO) estimates that 1 per cent of any African country’s population is deaf-blind, making the total number of deaf-blind persons in Malawi about 25,000. Malawi registers 50,000 new HIV cases every year, inclusive of the deaf-blind population.

This rate of new infections is unacceptable, considering the country has the tools to turn off this tap by giving HIV information, education and prevention services to marginalized people and minorities, such as prisoners, sex workers, men who have sex with men, women who have sex with women and people with disabilities.

COMMENTS

WORDPRESS: 3
  • comment-avatar

    This is a great story Owen. I am happy that this story has finally come out.

  • comment-avatar

    Thanks James for the complement.
    Indeed, deaf-blind population is one aspect that is less covered by journalists world wide.

  • comment-avatar
    Slade Sayakango 4 years

    Thanks for the story it is eye opening. I have interacted with VIHEMA through the projects we have supported and they are doing a great job.