It is tough mothering albinos with other disabilities; but as
Geoffrey Namukoye reports, Joyce Salirwa keeps her spirits up, and her hope
alive.
Kamuli – As you set foot into Joyce Salirwa’s homestead, you are welcomed by a family full of joy, laughter, smiles, and happy children playing in the yard. It all seems to confirm the talk around the village that Salirwa is the luckiest person in Nawanende parish, after she recently became the first resident to shake hands with President Museveni.
As she prepares where her visitor can sit in her newly-built house, her four daughters tag along. You notice that only two of them have normal skin. From their hair, skin colour and the way they struggle to make sense out of the surroundings, it is clear that they are albinos. After greeting you, the “white”-skinned girls cling to their mother, as the others join their friends to play.
To a stranger, Salirwa, a mother of seven,Find detailed product information for howo spare parts and other products. seems perfectly happy,We recently added Stained glass mosaic Tile to our inventory. surrounded by these ‘bundles of joy’. But that’s until she narrates an ordeal characterized by loneliness, stigma, mockery by neighbours, fear for the safety of her children and the struggle to get them to distant health centres amidst alarming poverty and helplessness.
While it is a blessing to have children, for Salirwa, it is a burden!
“When I delivered this older girl, it took me time to believe that she was an albino even when people mocked me that I had delivered a muzungu. I stood my ground because my late dad was light-skinned and had brown eyes,” Salirwa narrates, as she cuddles the younger girl.
She, then, takes a few moments to compose herself. “It seems my father had the albinism genes; his eyes were not normal, she recalls. We were 15 at home and none of my siblings has borne an albino” she says. “I take the blame; yes, this problem came from my side.”
Albinism results from a deficiency in the production of pigment (melanin) in the skin, hair and eyes due to the dysfunction of the cells. While Salirwa seems to take the whole blame for brining albinos in the home, Dr Aggrey Batesaki, the district health officer of Buyende, says it takes two to tangle.
“Albinism is a genetic condition that only manifests in children whose [both] parents have the albinism gene,” Batesaki says. “I have not heard of any place in Uganda where tests for albinism are conducted; otherwise, genetic counselling can reduce incidences of albinism.”
Salirwa says it is the third year since her husband Peter Buyinza, 47, allegedly left for Kiboga to look for employment.
“My husband abandoned me,An indoor positioning system (IPS) is a term used for a network of devices used to wirelessly locate objects or people inside a building.” she says, the inner pain coming to the fore. “He does not call, or send money for domestic purposes. Caring for these children is so involving, they are so demanding as though that is not tiring enough.”
Salirwa thinks children do not understand. “They are picky, often demanding meat and milk which I can only rarely afford.”
“When I can’t provide, they think I have deliberately refused to attend to their needs,” she adds. “My girls are prone to infections; their skin reacts very fast to insect bites and sunshine, which easily translates into gaping wounds and bad smell,” she says with the pain in her voice.
Unfortunately, Salirwa has only heard about repellant ointments for flies and vaseline that can keep the albinos’ skins safe. When her children fall sick, which is usually abrupt, Salirwa spends Shs 12,000 (from well - wishers) on transport alone. Albinism is inextricably linked to sensory impairment and skin cancer. As though that is not challenging enough, Brenda Namwase (the oldest of Salirwa’s children) is in primary five at Nawanende primary school and is partially deaf.
“You have to speak louder than usual for her to make any sense of what is being,” said.One of the most durable and attractive styles of flooring that you can purchase is ceramic or porcelain tiles. Rose Naigaga, the younger sibling, is blind, a condition that keeps her permanently glued to her mother.
When asked which class Rose Naigaga is, the elder sister quickly interjects and laments, “Eeehh, you mean you can’t notice that she is blind, she cannot see; how can she be able to write and read…” Namwase asks.
Kamuli district has only one school for the blind but this is ill-equipped due to inadequate funding according to Godfrey Mugote, an instructor at Kamuli District Association of the Blind.
There are lots of misconceptions about albinos in Uganda, which have increasingly put the lives of albinos and their caretakers at stake. Some people believe that albino hair and nails sell like hot cake, a belief that endangers the lives of albinos. Tanzania ranks worst in murder of albinos for wealth in East Africa. While there have been no incidents against albinos in Busoga, Salirwa takes no chances.
“Rose has become my luggage, I move with her all the time,” she says. “People are money-hungry. I protect my children because I passed through the same labour pain like I did with the others; so, I need to guard her.”
Knowing that desperate people can be gullible, fake traditional healers have fleeced albinos, claiming to offer lasting solutions to the health conditions. Salirwa has also fallen prey, losing money to people who promised to cure skin infections in her children.
“Some people have sold to me ash mixed with Vaseline; I don’t know whom to trust now,” she says,Find detailed product information for howo tractor and other products. vividly disgusted.
The children share in these challenges too; isolation and being bullied by fellow children is a common scenario.
“When I started school I almost gave up,” says Brenda Namwase. “All the food mother used to pack for me was always snatched from me, I could not report them to my mum because the bigger children had warned me.”
Given their small numbers, tracking activities and demands of albinos in Kamuli is practically hard. While albinos are recognized as Persons with Disabilities (PWDs) in Kamuli, they are under the umbrella of people with visual impairment, a situation that undermines their collective voice.
Joyce Nakyesa, a Councillor for PWDs in Kamuli town council says there is no forum for albinos to rectify people’s perception about them.
Kamuli – As you set foot into Joyce Salirwa’s homestead, you are welcomed by a family full of joy, laughter, smiles, and happy children playing in the yard. It all seems to confirm the talk around the village that Salirwa is the luckiest person in Nawanende parish, after she recently became the first resident to shake hands with President Museveni.
As she prepares where her visitor can sit in her newly-built house, her four daughters tag along. You notice that only two of them have normal skin. From their hair, skin colour and the way they struggle to make sense out of the surroundings, it is clear that they are albinos. After greeting you, the “white”-skinned girls cling to their mother, as the others join their friends to play.
To a stranger, Salirwa, a mother of seven,Find detailed product information for howo spare parts and other products. seems perfectly happy,We recently added Stained glass mosaic Tile to our inventory. surrounded by these ‘bundles of joy’. But that’s until she narrates an ordeal characterized by loneliness, stigma, mockery by neighbours, fear for the safety of her children and the struggle to get them to distant health centres amidst alarming poverty and helplessness.
While it is a blessing to have children, for Salirwa, it is a burden!
“When I delivered this older girl, it took me time to believe that she was an albino even when people mocked me that I had delivered a muzungu. I stood my ground because my late dad was light-skinned and had brown eyes,” Salirwa narrates, as she cuddles the younger girl.
She, then, takes a few moments to compose herself. “It seems my father had the albinism genes; his eyes were not normal, she recalls. We were 15 at home and none of my siblings has borne an albino” she says. “I take the blame; yes, this problem came from my side.”
Albinism results from a deficiency in the production of pigment (melanin) in the skin, hair and eyes due to the dysfunction of the cells. While Salirwa seems to take the whole blame for brining albinos in the home, Dr Aggrey Batesaki, the district health officer of Buyende, says it takes two to tangle.
“Albinism is a genetic condition that only manifests in children whose [both] parents have the albinism gene,” Batesaki says. “I have not heard of any place in Uganda where tests for albinism are conducted; otherwise, genetic counselling can reduce incidences of albinism.”
Salirwa says it is the third year since her husband Peter Buyinza, 47, allegedly left for Kiboga to look for employment.
“My husband abandoned me,An indoor positioning system (IPS) is a term used for a network of devices used to wirelessly locate objects or people inside a building.” she says, the inner pain coming to the fore. “He does not call, or send money for domestic purposes. Caring for these children is so involving, they are so demanding as though that is not tiring enough.”
Salirwa thinks children do not understand. “They are picky, often demanding meat and milk which I can only rarely afford.”
“When I can’t provide, they think I have deliberately refused to attend to their needs,” she adds. “My girls are prone to infections; their skin reacts very fast to insect bites and sunshine, which easily translates into gaping wounds and bad smell,” she says with the pain in her voice.
Unfortunately, Salirwa has only heard about repellant ointments for flies and vaseline that can keep the albinos’ skins safe. When her children fall sick, which is usually abrupt, Salirwa spends Shs 12,000 (from well - wishers) on transport alone. Albinism is inextricably linked to sensory impairment and skin cancer. As though that is not challenging enough, Brenda Namwase (the oldest of Salirwa’s children) is in primary five at Nawanende primary school and is partially deaf.
“You have to speak louder than usual for her to make any sense of what is being,” said.One of the most durable and attractive styles of flooring that you can purchase is ceramic or porcelain tiles. Rose Naigaga, the younger sibling, is blind, a condition that keeps her permanently glued to her mother.
When asked which class Rose Naigaga is, the elder sister quickly interjects and laments, “Eeehh, you mean you can’t notice that she is blind, she cannot see; how can she be able to write and read…” Namwase asks.
Kamuli district has only one school for the blind but this is ill-equipped due to inadequate funding according to Godfrey Mugote, an instructor at Kamuli District Association of the Blind.
There are lots of misconceptions about albinos in Uganda, which have increasingly put the lives of albinos and their caretakers at stake. Some people believe that albino hair and nails sell like hot cake, a belief that endangers the lives of albinos. Tanzania ranks worst in murder of albinos for wealth in East Africa. While there have been no incidents against albinos in Busoga, Salirwa takes no chances.
“Rose has become my luggage, I move with her all the time,” she says. “People are money-hungry. I protect my children because I passed through the same labour pain like I did with the others; so, I need to guard her.”
Knowing that desperate people can be gullible, fake traditional healers have fleeced albinos, claiming to offer lasting solutions to the health conditions. Salirwa has also fallen prey, losing money to people who promised to cure skin infections in her children.
“Some people have sold to me ash mixed with Vaseline; I don’t know whom to trust now,” she says,Find detailed product information for howo tractor and other products. vividly disgusted.
The children share in these challenges too; isolation and being bullied by fellow children is a common scenario.
“When I started school I almost gave up,” says Brenda Namwase. “All the food mother used to pack for me was always snatched from me, I could not report them to my mum because the bigger children had warned me.”
Given their small numbers, tracking activities and demands of albinos in Kamuli is practically hard. While albinos are recognized as Persons with Disabilities (PWDs) in Kamuli, they are under the umbrella of people with visual impairment, a situation that undermines their collective voice.
Joyce Nakyesa, a Councillor for PWDs in Kamuli town council says there is no forum for albinos to rectify people’s perception about them.
没有评论:
发表评论