Tag Archives: Stigma & Discrimination

Hope though false is worth clinging to.

healing-doesnt-mean

There are two two acronyms that people can not get their minds around. People automatically associate them with death. Yeah! I know many have died of HIV and AIDS related complications. Well, truth is, many have also succumbed to cancer, diabetes, and other conditions.

Other people associate HIV with a gold mine. They hear you mention these words and immediately someone wants to sell you their ‘natural cure’. I mean, if you can take ARVs for that long, you might as well be hooked on whatever other concoction they may hook you up on.

They tell you that ARVs have side effects that damage your internal organs. I am not a medic, but from the little knowledge I have, all drugs are toxic to the body. Even the supplements and herbs that we buy can be toxic to the liver.

The logic is, your life is worth investing in, right? People spend arms and legs together with whatever other extra limbs they have just to buy mortality. Fear of death is real, I dare say. The irony is, they end up buying their own death while trying to buy immortality.

Then there is the group that gets hyper religious when they hear you have the ‘plague’. People offer to pray and fast for your healing. Of course, I don’t want to come across as a faithless person. I know God heals. I am a Christian. I’ll just leave it at that, lest I say the wrong thing.

Speaking of Christians. Yes! Let’s just speak of a group of brethren. With pick up lines like ‘where do you fellowship?’ Before you know it, they want to come to your house. ‘Do you mean the flesh is still at work in you?’ they counter your argument against their ideas.

Once in your house, they just can’t keep their hands to themselves. Until you disclose to them that you are living positively with HIV.  They then go back yo their hyper spirituality, telling you to believe with them in your healing. They even abruptly turn into nutritional counselors. ‘Now you should avoid eating this and that, your diet should have this and that’. I’m like, “Get a hold of yourself, where were you all those years? I could have used your advise then”.

Then there’s the irksome type that preys on desperate, ignorant prey seeking prayer. Religion is in fact the opium of masses- Karl Marx. Promise anyone divine intervention to alleviate their impending suffering and they will give you anything. I mean, people have sold houses, vehicles even taken their hard earned life savings to these ‘men and women of God’ as seed offerings to pay for their healing.

Sadly, they did not end up so well. For some, it started with Tuberculosis, others Meningitis, while others, cancer, then eventually death.

So yeah, call me faithless, call me a skeptic, you can even call me a coward. I will run with this proverb, that he who fights and runs away, may live to fight another day.

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Raising a disabled child in Maasai land

By: Rading Biko Gerro.

Yiamata Lootasati in her compound in Elangata Wuas, Kajiado county
Yiamata Lootasati in her compound in Elangata Wuas, Kajiado county

She wakes up at 5 a.m. to cook breakfast to send the other children to school on time. She then proceeds to care for the cattle by taking them to the water shed then rushes back to care for her disabled daughter. At around midday she has to walk distance to fetch water for her family and she has to rush back to care for her disabled child. This is the daily life of Yiamata Lootasati, the 35-year mother of 9 who has a disabled child.

Once in her home one cannot miss the sight of Yiamata either at work, tending animals, carrying a baby, breast feeding, fetching fuel wood from the surrounding thicket, carrying water containers, or building and repairing a manyatta. The classic multitasking of the female species.

In between her burdensome chores of the day the Maasai woman is also a beader with such intangible high skills built into her cultural knowledge and practices.

Most of her struggles are shaped by circumstances and the challenges of her time including deep seated patriarchal attitude. The woman is simply faced by the “triple burden”: to reproduce, to produce and to bear all the other social roles.

The 2009 Kenyan census estimated that there were 1.3 million disabled people in the country, only three percent of the population. Though the numbers are hard to verify because some children with disabilities are kept hidden and out of family counts.

Stigma plays a role in the discrepancy and adds to the problem. Families will keep children born with disabilities out of sight from their neighbors.

Mengea Lootasati is aged 15 years but she does not look her age due to her disability situation, she was born normally like any other healthy baby, but her parents realized she was disabled five months later. Yiamata described her daughter as being healthy when she bore her and it was very hard for them to realize she was disabled.

Yiamata caring for Mengea at their Homestead
Yiamata caring for Mengea at their Homestead : Photos- Biko Rading

“Mengea was overweight when I gave birth to her and we thought she was just  overweight. She would take long to move her arms, but later we realized she was disabled,” laments Yiamata.

In Maasai land myths about the causes of disability persist and in one case, neighbors blamed the disability on bad spirits. They claimed that a murder committed by a previous generation was being punished through the disability of Yiamata’s daughter.

The family did not seek out modern medicine until traditional methods were exhausted. That’s when Action Aid Kenya and Loodikilani women network stepped in 2013 and sensitized her concerning disability. Apart from education, Action Aid Kenya catered for the daughter’s therapy, which she has been undertaking for one year.

Doctors says that Mengea’s case is a special one since her parents did not realize her situation early. “Doctors says her left side is entirely paralyzed and she will only be able to use her right side in her entire life,” narrates Yiamata, a tear flowing down her cheek.

Most parents with disabled children do not even consider the option of educating them. Some are kept tied up and even caged. Yiamata plans to enroll Mengea to a special school.

“Action Aid have trained me on the right for girl child education and that why we have decided that we shall enroll her in a special school. She would meet other children with her special needs, and would not be discriminated,” Yiamata says smiling.

According to Kenyatta National Hospital staff disabled children who get care at health centers are often unsupported when they return home. For children like Mengea, the cost of traveling to the nearest clinic is too great even when care is free.

Though raising a physically challenged child, Yiamata is an enthusiastic woman. She has challenged many to fight stigma and discrimination faced by People Living with Disability across Maasai-land. Through the training, vows to educate other women in Elanga Wuas on the need to care and love children with special needs because they too are children.

Charlie Sheen’s disclosure: HIV stigma is still with us

Stigma
There’s no hiding that HIV disclosure is still a hard thing, both for the Person Living With HIV and for their family. This is why when someone decides to declare their HIV status publicly, they ought to be commended.

As a person who took this difficult step years back, not because of the pat on the back, but because of dealing with self stigma, I have been keenly following the discourse about Charlie Sheen’s disclosure.

Disclosure frees one from unnecessary burdens borne due to living in the ‘HIV closet’.  The closet comes with different for everyone. For Charlie, it came with the burden of  having to pay millions to keep people from exposing his status. Other people might just want to have someone listen to them, and reassure them that it is not a life sentence. Better yet, like in my case, it was a freedom that meant I could take my medications in peace without people raising an eyebrow every time I popped the pills.

Ever since Charlie’s great revelation last week, I have read and listened to some not so pleasant comments regarding HIV. It has even been labelled the Charlie Sheen disease. First, HIV is just a condition, it does Not make someone suddenly different. He is still the same person he was even before you knew his status. There are very many people living with the virus and are ignorant of it. In 2014, there were roughly 2 million new HIV infections. Not all of these know their status.

I read an annoying tweet some two weeks before the disclosure, that a solution to global hunger had been found, so African children can live long enough to die of AIDS. Charlie’s disclosure proves that AIDS is not an African disease, rather anyone can be infected. It removes the stereotypes that have been linked to Africa, which Chimamanda terms as dangerous.

That aside, Charlie Sheen has made some not so wise choices in the past. You may hate him for that, but not about his HIV status.

Some facts about HIV

1. HIV is not transmitted through mosquito bites. It is a virus that needs the human body to survive. Once a mosquito bites someone, even if they had HIV, it dies immediately.
2. HIV is different from AIDS. HIV is just a condition that makes your body susceptible to infections when your immunity is low. AIDS is a syndrome- A mixture of opportunistic infections arising from a weakened immune system.
3. ARVs, the drugs used by People Living With HIV, are not only life prolonging. They prevent spread of the virus. That’s why there are so many children who are born HIV free, yet their mothers are HIV positive.
Once a person is on ARV treatment, chances of them transmitting the virus to other people. Ever asked yourself why there are so many discordant couples? This is not to encourage unprotected sex among discordant couples.

Well, we still need people to accept themselves and be comfortable to come out of their closet at will. Let’s not make it difficult for them. Those who find a joke out of Charlie’s status, maybe you should have a HIV test  in the process.  My two cents.

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