On October 5, 2018 I went for a blind date, thanks to a mutual friend. The butterflies in my stomach would not stop dancing to my racing heart. As I waited for the Uber to arrive and whisk me off for the afternoon date, my palms became moist with sweat and itchy. Meeting new people makes me nervous.
People often assume people like me don’t go for dates, get into relationships or get heartbreaks. Let me tell you – We do! If you are wondering who we are, let me help you with a little introduction.
For purposes of this story, I’ll use the pseudonym Nduta. I am a 23-year-old student in Nairobi, and one in 10 Kenyans living with a disability. I get around with a wheelchair.
We just have physical, intellectual and sensory impairments, and medical or mental conditions that are short-lived or permanent, but because we are “different” we are locked out from full and effective participation in society on an equal basis with others.
I am also HIV-positive, but not too many people know my status. I was born with the virus and abandoned at birth, not only because of my disability, but also because of my HIV status. This is part of the reason I am using a pseudonym.
I battle with stigma (both within and without) and discrimination, so I understand why people are reluctant to get tested or to disclose their HIV status and take antiretroviral drugs.
The stigma is worse for people with disability. Stigma is the prejudice, negative attitude and abuse directed at people based on their actual or perceived HIV status.
It leads to low self-esteem and isolation of the targeted person and leaves them open to violence and abuse. It also limits access to HIV testing, treatment and other health services.
A 2015 study, Are We Not Human? Stories of Stigma, Disability and HIV from Lusaka, Zambia and Their Implications for Access to Health Services, shows one of 32 participants preferred to “die quietly at home” rather than experience the stigmatising gaze of others when attempting to access life-preserving ART.
It echoes the 2014 UNAIDS GAP report — People with Disabilities — that shows more than 10 per cent of women and 23 per cent of men living with a disability reported not returning to seek healthcare be-cause they were treated badly during a previous visit.
But stigma is just one of the things. The life of a person with disability and HIV is clouded by many misconceptions. People, including health professionals, assume that we are not sexually-active, and therefore assume that we are at lower risk of HIV infection.
Health professionals fail to offer us the much-needed sexual and reproductive health services. Yet, research on people with disabilities in Kenya, Uganda, Malawi and Cameroon, published in 2007 by Handicap International, revealed that nearly one out of three people with disabilities have sex before the age of 16.
Moreover, people like me are most likely to experience sexual abuse and exploitation on their first sexual encounter, which reinforces a concern raised by the Joint United Nations Programme on HIV and AIDS (UNAIDS) in 2008 — that people living with disabilities worldwide remain one of the most vulnerable to HIV.
Like any other person, we require information on HIV/AIDS and access to programmes, services, and resources. But have you ever seen a condom or ARVs with instructions in Braille? How about sign language in health messages or advertisements?
There is an unmet need for health awareness information among people living with disabilities, who are about 10 per cent of the Kenyan population according to the World Health Organisation. Yet, we experience all of the risk factors associated with acquiring HIV.
In fact we may have an increased risk because of poverty, severely limited access to education and healthcare, and lack of information and resources in accessible formats, such as Braille, making it all the more difficult for us to acquire the knowledge we need to protect ourselves from HIV and other infections.
A blind person needs to touch and feel; a person with hearing impairment needs signs; while the one with intellectual disabilities may need plain and direct instruction with pictures that leave no room for false interpretations. But this is not the case.
It is thus not surprising that people living with disabilities are least likely to say how HIV is transmitted or how to prevent HIV infection. Failure to understand and provide essential information to persons with disabilities concerning HIV/AIDS worsens their marginalisation.
I found out my status at 15, when a hacking cough took me to hospital. I was worried I might have caught tuberculosis.
The doctor confirmed that indeed I had tuberculosis, and added that I was also HIV-positive. My immunity was greatly compromised and I was progressing to AIDS.
The counsellors were glad that I came to hospital on time; they told me that if I had come any later, the treatment would have been less effective and given that my virus was not contained, it would have been easier to transmit it to other people and it would have killed me.
While I am glad I had very understanding health workers who walked me through my new life-changing health status, some of my peers are not too lucky.
According to the World Health Organisation, people with disabilities are more than twice as likely to report finding healthcare provider skills inadequate to meet their needs, four times more likely to re-port being treated badly and nearly three times more likely to report being denied care.
HIV is significant health threat among adolescents and young people in Kenya, including those with disabilities. 2018 estimates from the National Aids Control Council, show that among adolescents aged 10 to 19 years, there are 105, 230 living with the virus, 8,177 newly infected and 2,072 died.
In youth aged 15 to 24, 184,719 are living with HIV, 17,667 are newly infected and 2,830 died of HIV-related complications.
HIV-related stigma is a significant barrier to access to HIV counselling and testing, as well as lifesaving HIV treatment for young people like me.
Kenya with approximately 1.5 million people living with HIV/AIDS is among four countries with the highest HIV burden in Africa. The others are Nigeria, South Africa, and Mozambique.
Today, three in four people know their HIV status, but if we are to make progress in the fight against new infections, we will need many more people to know their status, ensure that those who are HIV-positive are linked with quality care and prevention services.
Unfortunately, many barriers to HIV testing such as stigma and discrimination deter people from taking an HIV test. As a result, many people still only get tested after becoming ill and symptomatic, as it was in my case.
Fortunately, self-testing was introduced in Kenya, and for the disabled, specialised centres like Liverpool VCT make it easier for people with disabilities to access HIV testing and counselling services and get help from service providers who are trained to work with them.
As we look forward to marking World Aids Day on December 1 and the International Day of Persons with Disabilities on December 3, let’s not forget that wellbeing of people like me.
We are part of society and we need to be part of the war against new HIV infections.
One billion are disabled
More than one billion people (15 per cent of the world’s population) have a disability
Why people with disabilities are vulnerable. They:
- Are more likely to believe in wrong modes of transmission
- Are less likely to receive information and resources to ensure “safer sex” because common prevention programmes do not include disability-specific approaches
- Are more likely to be excluded from or deprived of education, particularly sex education
- Are at increased risk of violence and rape and are also without legal protection
- Are, as children, particularly vulnerable because parents (in particular, fathers) might desert children
- Have less access to testing and treatment because transport and medication might be unaffordable, clinics might not be not accessible, voluntary counselling and testing might not be disability specific, or counselling may violate basic requirements of confidentiality
- Are marginalised, and the double stigma of disability plus HIV/AIDS might make it difficult to disclose HIV status, particularly in the case of women who depend on their families, friends, boyfriends or husbands.
Barriers to healthcare for people with disabilities
1. Prohibitive costs of health services and transport to healthcare facilities
2. Lack of appropriate services for people with disabilities
3. Physical barriers:
- Uneven access to buildings (hospitals, health centres)
- Inaccessible medical equipment
- Poor signage
- Narrow doorways
- Internal steps (no ramps)
- Inaccessible and inadequate toilets
- Inaccessible parking areas
4. Inadequate skills and knowledge of health workers to meet the needs of people with disabilities
5. Maltreatment by health workers
6. Being denied care by health workers
Source: World Health Organisation