Tag Archives: autism

Charity and M'Adyoa

Mental illness still widely misunderstood in Ghana

This past week was a bit of a learning experience.

I learned that in Ghana, many children with mental disabilities are thought to be ‘water babies,’ or demon-possessed witch children.  I learned that most parents will leave such newborns at orphanages or children’s homes, though occasionally, kids are simply taken into the bush and left to die.  I learned that education about mental disabilities in Ghana is still relatively basic, and I learned that the current state of affairs can only improve if there is an improvement in public awareness.

I also learned that there is hope.  Operation Hand in Hand was started in 1992 by a Dutch doctor named Ineke Bosman as a shelter for mentally disabled orphans.  It’s now a permanent care home to 65 kids and adults and 31 caregivers.  Leah and I had the opportunity to visit and stay overnight at the shelter’s guesthouse in Nkoranza this past weekend, and it gave us a glimpse, albeit fleeting, into the world of 65 people who have been abandoned by their families, but adopted into a new one.  To see more of the Operation Hand in Hand community, check out Leah’s video blog here.

Operation Hand in Hand have seen many mentally disabled children pass through its front gates.

What we saw at Operation Hand in Hand was inspiring, but also a painful reminder of the challenges that still face mentally disabled people in Ghana.

“People are afraid of these children,” said Samuel Beffo, Operation Hand in Hand’s project director.  “When they have children like this, they send them to the hospital and then run away so [hospital authorities] can’t trace the family.”

The kids, who come from all over the country, are affected by a variety of illnesses, most commonly Down’s Syndrome or autism.  Beffo said the majority of cases are sent to Operation Hand in Hand by either the Department of Social Welfare or Health Services.  However, he stresses that merely sending mentally disabled kids to the community is not enough.

“Ghana is not helpful to the mentally handicapped,” said Beffo.  “The government simply [doesn’t] care.  Even the funds we are using to support this place, none come from the Ghanaian government.”

Instead, Beffo said the camp is funded by donations from all over the world, including Germany, Holland, and the United States, and the children are sponsored by “adoptive families” who send about $50 a month.  The kids’ caregivers are comprised of both international and Ghanaian volunteers.

Charity Asabea belongs to the latter group.  The 31-year-old Nkoranza native was originally hired at Operation Hand in Hand in 2003 to be a receptionist.  Asabea admitted that at first, she had reservations about working at a shelter for mentally disabled children.

“Before I came here, I had never seen such a child before,” said Asabea, “but one of my friends told me, ‘Just come and try it. If you don’t like it, you can leave.’”

Clearly, Asabea liked it, and eight years later, she is still at the shelter, where she is the head hostess and also the caregiver to a child, 16-year-old M’Adyoa.

“She calls me ‘Mommy,” said Asabea of M’Adyoa, who suffers from autism and epilepsy.  “I just call her M’Adyoa.”

When I asked her M’Adyoa’s last name, Asabea smiled.

“Bosman,” she said.  “All the children here are named after Dr. Bosman, because when they came, they were orphans.  Now, they have joined a family.”

Charity and M'Adyoa with big smiles for the camera!

Autism in Ghana part II: Battling stigma and education youth

Seletay Pi-Bansa, 8, learns to read at write at AACT, a special school for autistic youth in Ghana. Photo by Angela Johnston.

A group of students gather in a circle around a blackboard in a small Accra classroom. Eight-year-old Seletay Pi-Bansa holds a piece of chalk. He begins to sketch letters on the board and his classmates clap in a rhythmic beat to encourage him.

“Let’s hear for Seletay,” the teacher says at the Autism Awareness, Care and Training Centre (AACT).

Seletay’s mother, Evelyne Pi-Bansa, sits outside. She says this autism centre is helping Sel learn better than other schools he has attended in the city.

The autism centre is one of only a few places here that work with autistic children, in a country where no official statistics exist about the number of people with autism.

And that lack of resources for families with autistic children has some calling for more to be done in a country where stigma about the disorder remains high.

Seletay’s mother says many people here do not understand his behaviour, like throwing tantrums or running around—she says people often think he is spoiled. And she says it was hard for her to hear Seletay’s diagnosis.

“It just hit me like a tornado,” she says, “I was in denial, and for a long time we started going from place to place.  Somebody would say, let’s go see this pastor.  Let’s go to this church, and pray.”

Now, Pi-Bansa is emphasizing the activities that make Seletay happy—like jumping on trampolines, sight-seeing and swimming.  And she says she hopes one day, he will be able to enjoy another typical childhood experience—attending a properly resourced mainstream Ghanaian school.

“We all have rights,” she says, “If the government is providing [education] for the everyday child who goes to everyday school, I should also have, because I pay tax.”

It’s a fight Serwah Quaynor has also taken up. She runs the centre, which offers speech and language therapy, life skills training and functional academics.  About 40 students attend every day.

Though Quaynor opened the centre more than a decade ago, she says understanding about the disorder remains low.

“People are locking some of their children in because nobody wants to know,” says Quanor. “Even in families, people don’t want to be with you. Friends shun you . . . and you find yourself rather alone.”

Quaynor says the government needs to train teachers to help children with autism and also increase support in rural areas.

Dr. Ebenezer Badoe, one of Ghana’s leading experts on autism, also says more can be done. Parents need to band together he maintains, and start demanding more from government.

“We need to hear them time after time, putting pressure and then the resources will start to come,” he says.

The deputy director of the Ghana Education Service, Stephen Adu, told Ghana’s Citi FM that no specific programs exist in Ghana’s public schools for autistic students. Teachers refer cases to health specialists—but are often on their own in the classroom.

Back at the centre, Evelyne Pi-Bansa says she is already thinking about Seletay’s future.  She says she wants him to develop a skill—such as cooking, or IT expertise—and be independent. And she is optimistic about his future.

“We don’t have any doubts that he will be the best in his field, and we want that,” she says.

Yes they can: Obama Biscuits employs autistic adults in Accra

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Video and Text by Robin Pierro

Nortey Quaynor sits at his station in Accra’s United Biscuits factory. His hands move swiftly sealing bags of freshly baked cookies with Barack Obama’s face pressed into them. Large machines fill the warehouse with a deafening drone while the sweet aroma of fresh baking wafts in the air. Nortey remains undistracted by the hundreds of people working around him. It’s his seventh month at the biscuit factory and the other workers no longer look at him like he’s different.

Nortey has lived with autism for 28 years, and for the first time in his life, he has a job. He doesn’t know exactly who President Obama is, but he does understand that he has a task to do: seal biscuit packages. His caregiver, Abiku Grant, who works for the Autistic Awareness Care and Training Centre (AACT) in Accra, stands off to the side exhibiting a proud grin.

AACT is the only centre in Ghana that works specifically with autistic people, and the high demand for support only allows them to care for people up to 25 years old.

Grant says the training program at the biscuit factory was established to teach autistic people skills they can use to find work once they leave the centre. However, setting the program up wasn’t easy.

“There is so much stigma surrounding autism and disabilities in Ghana, people look at them and think that they are mad,” says Grant. “They don’t think they can be taught the skills to work.”

In light of April being autism awareness month, a conference was recently held in Accra to bring together the West African autism community for the first time.

Dr. Emmanuel Badoe, Director of the Neurology Developmental Clinic at the Korle Bu teaching hospital in Accra, was a presenter at the conference. He says there are no statistics on how many people have autism in West Africa and there are only a handful of professionals who work with developmental disorders in the region. Beyond that, he notes a lack of information for Ghanaian families about autism; many people don’t even know the disorder exists.

This lack of public awareness has made it difficult for people with autism to be accepted into regular society, let alone gain employment.

“This is a real way forward,” says Dr. Emmanuel Badoe, speaking about the work program. “People with disabilities need to be integrated back into society. This is a great thing for our country.”

Nortey was the first member of AACT to be placed in the biscuit factory, where six other autistic men and women are also employed. Nortey works in a spaghetti factory too, and AACT is hoping more companies open their doors to autistic workers.

Thorugh his work, Nortey is slowly changing the perception of autism in Ghana. When his mother, Serwah Quaynor, founded AACT it was out of a need that was not being filled by other facilities. She knew Nortey could not be the only one with autism in Ghana and opened the centre, but never expected to get to a point where her son could be employed.

“People are finally realizing what autism is,” says Quaynor. “Now the workers in the factories look at Nortey like he is a normal person.”

Nortey will continue to do his part in changing the public view towards people with autism, one Obama biscuit package at a time. Yes he can.

Ghana’s Refuge for Autism

I stood by a playground waiting to interview Serwah Quaynor, founder of Ghana’s only autistic school. A boy walked up to me and without a word spoken, he handed me a plastic ball and bowling pin. He made a gesture that he wants me to throw it back to him. I tossed the ball and he caught it but looked unsatisfied. He pointed to the bowling pin and gestured that he wanted me to hit the ball to him with the pin like it was a baseball bat.

This went on for what seemed like nine innings until my interviewee arrived. Inability to speak, fixation on certain objects and repetition of movements are a few symptoms of autism, a disorder that is almost unknown in Ghana, where mental abnormalities are often blamed on witches or possession by demons. Quaynor  founded the Autism Awareness, Care, and Training Centre 12 years ago because there was no autism organizations in the entire country. The centre is a school, daycare, and headquarters of a movement to teach Ghanaians what autism means.

The entrance to Ghana's only autism centre

“We don’t just teach them how to write,” she told me as we toured the classrooms. “It’s not about that. It’s more about building social skills. If one child with autism improves, we’ve done our work.”

Quaynor has a teenage son with autism. She raised him in the United States where he was diagnosed, and when she brought him to Ghana she was alarmed to find that almost no one knew about autism. She started talking to people at church, describing the symptoms of autism. Soon she was in contact with a couple parents of autism children who didn’t know their child had this permanent but very treatable disorder. Their children were Quaynor’s first students.

Quaynor estimates the school has helped 130 to 140 autistic children since it began. If autistic children are put in a program that focuses on verbal skills and structured learning they can avoid the most serious consequences of the disorder.

The tragedy is that in a country where autism is virtually unknown, that treatment rarely happens. The best thing for an autistic child is not seclusion but inclusion, according to Quaynor. She advises parents to keep their child in regular school as much as possible and only come to her school for extra help. But public schools don’t have teachers with training in special education, and autistic kids don’t get extra attention they need to perform academically.

In a country facing a teaching shortage, special education is overlooked while the state tries to provide teachers to the rest of Ghana’s youth, but giving the disabled the resources they need to live good lives benefits more than just the disabled, according to Quaynor.

“I think it benefits the society at large,” she said to me. “We learn to accept each other. We all have some kind of disability. Just because someone can’t walk, or is in a wheelchair, must that person be shoved to the back? A human being is a human being, no matter what.”