Beverly Pile still remembers the day as if it were yesterday. But it was almost 24 years ago that she gave birth to a baby boy, whom she later discovered did not have the ‘ten toes and fingers’ mothers pray for. Instead, some of his fingers were missing, some were pasted together and to the naked eye, it was obvious that something was wrong with his legs.
She cried for almost six months and fought constant emotional battles as she took little Daniel into the public and was faced with the cruel remarks of others. She vividly remembers the harsh comment of a doctor who questioned why she was bringing up a child who would be an obvious burden.
“You see, society is cruel. …People said all kinds of things like, ‘it is some sin you commit, you do something bad mek the child happen, you must be try to throw away [abort] the child.’ If you heard the comments and I was like oh my gosh, I can’t take this anymore,” she recalled.
Daniel has a physical disability. Both his legs and his hands are not fully developed. He also has a cleft palate. He has an intellectual disability and never walked until he was seven years old. Devastation, despondency and depression all rolled into one is how Pyle described her emotional state shortly after her son was born.
But with the help of her husband, Aubrey Pile, who has been a tower of strength and reminded her of their faith (they are staunch Seventh-day Adventists) she coped, and today while Daniel is not perfect according to the world’s standards, he is a perfect son and brother and one who brings them great joy. If his mother could roll back time, the only thing she would do differently is ensure he attended school early instead of keeping him at home.
“He went late and was seven when he graduated from nursery. I remembered when they called Daniel Pile’s name he got up and walked, yes he walked! He collected his certificate from Ann Greene [Head of the Child Care and Protection Agency]. He attended Polly’s Nursery and I can still remember how I felt and the tears that were in my eyes…,” Pile told the Sunday Stabroek in a recent interview, close to tears from that memory.
Today, Pile is still fighting the battle, not only for Daniel, but for persons living with disability around the country as she is Executive Secretary of the National Commission on Disability (NCD) which works to ensure the rights of such persons.
“It is a battle that I fight with all my might,” Pile declared emphatically.
Pile has been at the commission for almost 17 years and she recalled that it was Daniel’s disability that propelled her in that direction.
She was working at the Guyana Power and Light (GPL) when her son was born and seeking to improve his life, she explored avenues to leave the country, thought she had found one and resigned from her job.
But that was not to be and she was forced to find another job. She eventually started working at the NCD after she saw an advertisement and felt “this is what I want to do.”
She noted, “I really enjoy what I am doing because I recognize that I can speak to parents, give them advice, knowing exactly what happened to me.”
She pointed out that the main thrust and focus of the commission to protect and promote the rights of persons living with disabilities. Persons are encouraged to register with the NCD and the commission helps them to access the assistance they may need.
The NCD had just about 4,000 persons registered, but Pile said they are aware that there are many more and they are currently involved in a house-to-house survey. Region Six is completed and Region Five is almost completed. So far, for Region Six alone, 3,067 persons with disabilities registered. The survey is currently ongoing in Region Two.
“We are facing a challenge where people with disability are saying to us, ‘I don’t have a disability,’ and there is nothing you can do about it because that is their right,” Pile said.
The commission is also working on getting everyone to understand that disability is not only something to talk about, “you need to think about it and plan for it so that when you are executing your plans you [include] persons with disabilities.”
She pointed out that Daniel did not grasp much in the primary school system because of his intellectual disability and the curriculum not being designed to assist his learning process.
“The problem we have with teachers and trying to teach children with disabilities they are not trained to teach them,” she noted, adding that the NCD is liaising with the Ministry of Education in an effort have teachers specially trained for this purpose.
She said things are happening as the commission works to protect the rights of persons with disabilities and also to sensitise others on how to treat and to cater for such persons. She pointed out that the words used to describe persons with disabilities are discriminating and noted that the David Rose School for the Handicapped is now changing its name to the David Rose School for Persons with Special Needs.
Still no diagnosis
For Pile one difficulty is the fact is that she still does not have a diagnosis for Daniel’s disability.
“It was most distressing that I could never have gotten why this child was born like this. The first child was born okay. He comes along and has a disability and the third is okay… At this age—my son is 23, will be 24 next month—they still can’t say what is the reason,” Pyle said.
She recalled that she gave birth via C-section and but did not see her child for some time as, unknown to her, Aubrey had informed the medical personnel not to inform her of Daniel’s disability but allow him to do so. And it was while she was complaining that she had not seen the child over a day and half later that he haltingly told her of their son’s disability; but not in clear terms.
“I was asking him when he was hesitating ‘what happen he don’t have ten fingers and ten toes?’ and he was like ‘not really,’ and I said, ‘how not really what happening?’ and he said ‘calm down, he don’t really have ten fingers, yes he has his ten toes…’” Pile said adding that by then she was overanxious to see her son and demanded that she be allowed to do so.
When she saw her child, Pile said, she was so shocked that she burst into tears “and that was me, crying for the next six months, I didn’t expect that.”
She described her husband’s support from then onward as a “tower of strength” even though it took a while before she really listened to him. “He said, ‘Beverly we don’t know why this happened, but God knows and we are not going to fly in his face. He has a reason for this and we are going to face it, together,’” she recalled.
She refused to go out publicly with Daniel but her husband would remind her of his doctor’s appointments and would take him if she was not up to it.
The doctors and nurses at the hospital had earlier informed them that the child would not have been taken back for his six-week check-up, hinting that he would have been dead by then.
“Taking him home was not easy because I had to literally feed him with a pipet through a tube, through his nose to get to his stomach. He was very tiny but with the help of my husband I got through that. He kept praying. He kept strengthening me. We just kept praying,” she recalled.
Eventually, she joined the Ruimveldt Parent Support Group whose members are parents of children with disabilities. It was formed by Doreen Barrington and Pile is still a member. She even served as president and is currently the secretary. The group meets once a month; members offer support to each other and members are also trained on how to deal with their children.
“I went and I have not regretted it. I would encourage any parent to join a support group… I went to that grouping and you know there is the saying ‘if you think you situation bad see others?’ I am telling you that is exactly what happened.”
She recalled that many mothers related that after the child was born their fathers disappeared and they were left to fend for themselves; she had the support of her husband.
“And you would hear stories and it kind of strengthens you and you say, listen this is not the end of the world get on with your life.”
Pile became consumed with Daniel but the founder of the group eventually encouraged her to have a third child which she did.
It was when her eight-month-old son started to walk that Daniel, who has no knees as the upper extremities of both legs and arms are missing, also started to walk at the age of seven. Before that he dragged on his derriere.
Daniel is very visual, according to his mother, and has a knack for the computer. He is very good at creating posters, tickets and other computer generated items. But he does not have a certificate that could make him employable and is now attending classes at Computer World.
And while he only has three fingers on one hand and four on the other with two fused together, Daniel can write.
He is a “popular guy around the town and catches public transportation,” Pile said; while she tries she sometimes treats him like a child instead of an adult and he rebels.
“It is not easy and I have to fight to keep a balance because you know as a parent you can’t help it,” she added.