Disability Technology & News

Disability in an Asian Family

After reading this heart warming story I decided to posted on here, not only because of the emotions it evoked but for the way the content was communicated. From the original written article (linked below) users have the option of read the news article on the screen or they can have it read out loud; sort of like an audio book or a podcast. It behooves other leading news corporations to follow OhMyNews.com lead and make their informations in different communication forms so that everyone, despite abilities, have the same opportunities to be inform.

Living With Disability in the Family
Having a Down syndrome child teaches one what’s truly important
Njei Moses Timah (njemotim)
April 13, 2007
Source: OhmyNews

Njei Endam Akum, 13 is one of my three children. She is a special kind of child because of her disability. At birth, she had low birth weight and persistent high temperature. She was discharged from the maternity ward and was admitted two days later into a pediatric clinic.

I was later called by the pediatrician and after brief counseling, I was given the sad message. The doctor informed me that he suspected that the child is a “Down syndrome” case and that if I want to confirm the diagnosis, samples could be sent to France for that purpose. “Why do I need to spend money to confirm a medical condition that has no cure?” I asked myself.

Down syndrome is a genetic, or more precisely, a chromosomal disorder that is present right from the formative stage of the fetus in the womb. Some of the physical features of people with Down syndrome include; a small skull, flattened nose bridge, large tongue, short stature, and low muscle tone throughout the body. A child born with Down syndrome will most likely have learning disabilities and speech problems and is more susceptible to heart and thyroid disorders.

From the time Akum was born up till when she was about a year, her neck muscles were not strong enough to support her head, and it was the same with other muscles. The whole body was weak and floppy and she was generally inactive. The inactivity made her suffer from chronic constipation. She could go for days without defecating.

The first difficulty I faced was how to explain the child’s condition to her mother and the rest of the family, given that genetics is a difficult topic even for biology students. I tried hard, but it was difficult to sell the ideas convincingly to everyone given the superstitious context of the environment in which we live. Some people alleged that the child was a type of “mermaid” or a “snake” and quite a number believed she would never walk. It was quite traumatic, especially for the mother who was not only battling with the reality of a disabled child but also with the superstitious stories pertaining to the innocent baby. For me (being a pharmacist), there was no question of doubting the doctor’s diagnosis, but in Africa, rational scientific pronouncements do not necessarily lay all matters to rest.

Faced with pressure, particularly from my mother-in-law, I had to take the child to a “witch doctor.” I was doing that just to exonerate myself from accusations in the future. I did not believe in what we were doing, but I also did not want to leave room for someone to tell me that the child could have been cured if I had only done this.

My encounter with the so-called “witch doctor” was an eye opener indeed. I discovered that these people thrive on evoking fear and applying a form of “intimidation psychology” to their patients. In one ridiculous instance the “doctor” proposed to protect me from an impending mortal auto accident “within the next few months,” which he claimed to have “foreseen.” To his astonishment, I turned down his request, insisting that he sort out the baby’s problem first. As expected, nothing positive came out of the sessions we had with the witch doctor. I drove the same car safely up to eight years afterwards. I now appreciate the dilemma and confusion faced by other, less informed parents who have children like Akum.

Before Akum could start walking at the age of three, she had gone through several physiotherapy sessions to enable her feeble legs to support her. From the age of four to the age of seven she lived with my elder sister (whom she calls mama) about 400 kilometers away from us. Regardless of her disability, she always wears a happy face and is friendly with virtually everyone.

When she was younger, she would cry if you failed to sing the song that she had in her mind at that particular moment. To indicate that she wants to sing, she will start clapping. You then had to guess the tune of several of her usual songs until you got the one she needed. She then brightens up and intensifies the clapping while you sing. She is older now, and still loves singing, but cannot properly pronounce the lyrics. I sometimes look at her and wonder why someone with speech problems can be so devoted to singing.

Akum has been in nursery and elementary school for the past eight years, but she can barely write the letters of the alphabet. She can count up to 100 but can effectively write from one to 10 with occasional confusion between the digits six and nine. This is normal for some Down syndrome cases. I met a Dutch lady who told me that the only letter that her 40-year old Down syndrome brother could write was H.

Akum has outgrown the lies of the witch doctor. She is now a beautiful 13-year-old girl. She did not turn into a snake nor did she fail to walk. Yes, she has her peculiarities. Akum’s relatively large tongue distorts her speech and makes it difficult sometimes to understand her. On the other hand, she is more conscious of personal hygiene and more mature in her behavior and socialization than her senior brother, who is a “normal” child. She is magnanimous when appreciating a gift or a favor. She will remind you to pray before you eat or go to bed.

Akum is fond of making a mockery of me. “Daddy chop chop big belly” she will say. Her repeated criticism of my “big belly” made me to sit up and start paying attention to my weight. When Akum is asked to say a prayer, she will usually say; “Oh God, thank you for mom, thank you for Anna (sister), thank you for Fidel (brother), thank you for mama (her aunt), thank you for daddy and computer.” She makes sure she associates me with the computer in her prayer, maybe because I spend most of the time with it.

Due to her speech problems, there are times that she says something that I do not understand. She repeats the sentence and tries to add sign language. If I still do not understand her after three or four trials, she will just smile and drop the topic. I will then have a feeling of guilt descending on me for not understanding her, especially more so because she is not angry about my incomprehension.

Her open-mindedness coupled with friendliness has made many people know her. Some years back, I met a lady who talked about Akum without knowing that I was her father. She mentioned that my elder sister always moved with a little girl that had the characteristics of a fool. I told her that the little girl in question was my beloved daughter Akum and she is a Down syndrome case. This woman was very embarrassed and felt guilty that she had unknowingly hurt me. I did all I could to comfort and reassure her that I was not hurt.

When you have a child like Akum, you should be prepared to hear all sorts of comments, which may range from expressions of sympathy to outright insults. The essential thing is not to get even with those who make negative comments, but to educate them. Most of the perceived negative comments are born out of ignorance.

Living with Akum has been like going through a new kind of school. I can now better appreciate the diversity and multicolored nature of life. We, the “normal” people, spend all our time fighting to grab more knowledge, more money, more power, and other advantages. People like Akum have no goals to attain, and paradoxically they seem to be happier than the rest of us. They are devoid of envy and do not have enemies. They do not understand concepts like tribalism, racism or any form of discrimination.

The only thing these people need from society is love. They are not interested in your dollar bills. Sometimes, as a parent, you start to worry about the fate of such a dependent child after your departure from this world. Yes, you must be worried, because you are not like Akum. People like Akum know that everybody around is a parent, and they hardly bother about tomorrow.

Watch video of Akum running and trailing her sister at this link. A version of this article appears on my website and another concise version has appeared on BBC True Lives online.

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