ACTS OF KINDNESS: Ugandan father risks it all to give his daughter the gift of hearing

Elaine’s favorite class is Spanish. She’s only in third grade and is already learning a second language. Elaine Asaba’webwa is also deaf. The expectation was that she would learn no verbal language at all, her father Eddie Mukaaya says. Especially considering the fact that Elaine is from Uganda, where the word for deaf—”kasiru”—literally translates to “stupid — unable to learn,” emotes Eddie.

The eight-year-old says she wants to learn Spanish because some of her friends at Duxbury Elementary School are either learning the language already or speak it at home. Her father, Eddie Mukaaya, boasts about Elaine’s achievements at school. Elaine appears too modest to elaborate beyond mentioning her eagerness to learn. Eddie, the proud father he is, says she speaks excellent Spanish. Elaine has big, brown, excited eyes that shift from left to right as she speaks. She’s soft spoken and chooses her words carefully. When I meet her, she’s wearing brightly colored leggings that she picked out herself.

Elaine was born hard of hearing. After two years, doctors diagnosed her as fully deaf. Eddie explains that Elaine had a cochlear implant procedure, which is why she can speak both English and Spanish. A cochlear implant is a small, electronic device that can give a sense of sound to people who are hard-of-hearing or deaf. The vibrations from the implant prompt the cochlea to react to sound. Elaine had the procedure done in 2010 when she was four years old. She is the first child from Uganda to receive a cochlear implant. The procedure was performed by Massachusetts Eye and Ear Infirmary. Elaine wasn’t able to receive the cochlear implant in Uganda because the country had neither the doctors nor the proper equipment to perform the surgery on a child. That’s not to say that the surgery has never been performed in Uganda: in 2008, a team of American and Ugandan doctors performed the first surgery of this kind on a 23-year-old man.

Eddie and Elaine are from Kampala, Uganda. When they arrived in the United States in 2010, it was their first time in the country. Eddie said the decision to move was a difficult one. He had a caring wife of seven years and a dependable job as a training secretary for a parachurch organization called Focus Uganda. Uganda provided a sense of security and the United States did not. However, Eddie saw the move as an opportunity for Elaine to hear and to learn to speak. This was important considering the stigma associated with deafness in Uganda.

In that country, parents sometimes go so far as to hide their deaf children at home while they go about their day-to-day activities, Eddie says. Parents are ashamed and view deafness as a curse.

“I have never met a deaf person in all my educated career,” he says.

Education was one of Eddie’s first concerns after learning that his daughter was deaf. Since he had gone to school, finished college and was a success by anyone’s standards, he wished the same for his daughter—as any father would.

“And already there is a strike against her, in my culture, because she is a woman. Now she is deaf — two strikes against her in Ugandan culture,” he says.

The family faced a lonely journey at first. There weren’t many support groups or families whose children were either hard of hearing or deaf. Eddie looked into the Good Samaritan, a boarding school for deaf students in Kitengesa, Uganda, but ended up not liking this option. He commended the school but said he didn’t like the idea of sending Elaine away. Deafness in Uganda is an isolating problem.

The only viable option Eddie saw was to have the cochlear implant procedure carried out. This meant moving to the United States.

Eddie found a way to have the procedure done with the help of his church community. A friend from a church leadership conference he attended put him in touch with a doctor in New York City. Eddie told the doctor his story, and the doctor agreed to perform the procedure for free. A cochlear implant sound processor costs anywhere between $6,000 to $7,000, and batteries cost about $250. This is without healthcare coverage. Since Eddie had a compelling enough story and the right connections, the New York City doctor agreed to do it for free.

Next, Eddie had to think about housing. His church had no New York City affiliate, but it did have one in Boston at Park Street Church. He knew he would be able to find residency in Boston that way. Eddie spoke to the New York City doctor and shared his predicament. The doctor made a call to the Massachusetts Eye and Ear Infirmary, and a team of doctors volunteered to do the procedure for free. The batteries Elaine would need were donated. To this day, Eddie does not know who donated to the fund.

“There are some people out there who God uses to step into situations which are hard, like it was for myself. God bless their hearts,” Eddie says.

They agreed to perform the procedure upon the condition that Elaine and Eddie would stay in the United States for an undetermined amount of time after the first procedure. Elaine would need to undergo rehabilitation and would require careful observation to document her progress. Cochlear implant surgery doesn’t automatically result in hearing, the doctors explained to Eddie. He didn’t know this until after he had planned his trip to the United States. Eddie had already invested so much in the trip and couldn’t possibly think of cancelling it. He went on with the plan, uncertain of the outcome. Eddie and Elaine arrived at Logan Airport in February, 2010.

The senior audiologist at the Massachusetts Eye and Ear Infirmary, Annie Hennessey, says she remembers how distressed Eddie was when he learned he would have to stay in the United States for an uncertain length of time. All the doctors understood his situation and did their best to accommodate him and Elaine. Senior Audiologist Hennessey even invited Eddie and Elaine for supper occasionally. At one point, she found herself babysitting Elaine. Of course, she didn’t mind. She instantly fell in love with her and hoped she would return to Uganda with a Boston accent.

When the time for the surgery finally came around, Eddie says they had outstayed their welcome at the homes of families who attended Park Street Church. Elaine’s surgery wasn’t scheduled until July 29, 2010, and they had already been jumping from house to house for six months.

The host family he was staying with in July intended to move out in August, so he needed to find accommodation for himself and Elaine for after the surgery. “I didn’t know how to deal with it,” Eddie says.

At one point, he even thought they might have to sleep at a bus stop.  While Elaine was in the operating room, he prayed to God that they would find a place to live. As she was resting in the operating room after her surgery, he went on a walk—and on his walk, he saw a house for rent.

“I called that owner, and said, ‘I know you are selling the house but can I use your house momentarily,’” Eddie says.

By some miracle, the owner agreed to talk to Eddie. He told Eddie he was renting the house on a month-to-month basis and offered him the option of renting it. Eddie didn’t work so he wouldn’t be able to pay for it by himself. However, Eddie was determined to find shelter, and he made some calls to his friends back home. A friend of a friend agreed to help Eddie by paying the rent for his new home. He even housed him through August and helped him situate himself in his new home in September.

“That is uncommon right?” Eddie asks in disbelief.

He didn’t understand how any of it had worked: how he had managed to come to the United States to have this procedure done for Elaine, had received the batteries for free and had even found a home for when she was undergoing rehabilitation. “What do you call that?” Eddie asks.

Acts of kindness motivate Eddie. God motivates Eddie. And more importantly, Elaine motivates Eddie. Since then, Eddie has found a job at an environmental civil engineering firm called CDM Smith, which supplies him and Elaine with healthcare. His wife, Elon, came to the United States for Elaine’s second cochlear implant procedure in 2012. Eddie and his wife are also planning to create a program in Uganda for deaf children to help dispel the stigma they face. It’s a work in progress, but Eddie is hopeful.

“I’ll be depending on friend-raising,” Eddie says, a term inspired by acts of kindness he witnessed on his journey.

Eddie credits these acts to Elaine, saying she is a special child who inspires people to help. It was Elaine who prevented us from homelessness, Eddie pointed out. She was the source of hope. She encouraged me, he says.

Elaine was always willing to learn, and even as a baby, she had eager eyes. Everyone who meets her recognizes this, he goes on. All the audiologists who met Elaine at the Massachusetts Eye and Ear Infirmary agree. She’s a curious little girl, Eddie says. There was no doubt in his mind that she would one day learn to speak.

 

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