Social Commentary: Intellectual Disability (Down Syndrome) in Ethiopia

Intellectual Disability as wiki defines it is a broad concept encompassing various intellectual deficits, including mental retardation (MR), deficits too mild to properly qualify as MR, various specific conditions, and problems acquired later in life through acquired brain injuries and neurodegenerative diseases like dementia. Intellectual disabilities may appear at any age.

I hardly saw a person with a mental disability growing up in Ethiopia so the issue never appeared to me that significant. The superstitious gossips I heard about the causes of the condition has even made discussing the topic among each other a taboo. The gossips ranged from 'he/she is possessed by an evil spirit' to 'the mother was cursed' or the most common, 'she laughed at a mentally disabled person while she was pregnant with her now disabled child'. 

           One spring break, I had a privilege of visiting an aunt whom I have never met in person before. I had heard some family members sucking their teeth (a gesture used by most Ethiopians to show sympathy) and talk about her 'sick one and only child'. No one further  discussed the extent of his illness. When I met her son, I was in for quite a shock. I really didn't not expect to be confronted by what I walked in to. I didn't know what to do or say at that moment. This handsome thirteen year old boy right in front of me can't utter a single word, couldn't stand up on his own or walk properly. My ignorance took over for a second and I kept on staring at him then his mom trying to figure out if  a 'devil' or  any sort of 'curse' had anything to do with it.
             My aunt had Ebeneezer when she was in her forties. At that age, the probability of a first time mother having a child with a Down syndrome or any intellectual disability is astronomical. Ebeneezer, not only was born with down syndrome, but he was also autistic.

         It took me few hours to really come to my senses and realize that Ebeneezer was far more than his impairment. His disability is something he has to deal with everyday but not who he actually is as a person. He is such a loving kid with a wonderful spirit. Though he can't communicate with words, he sure knows how to express his affection with a warm hug, huge smile and a cheerful noise. He loved the sound of my clap. He held on to my wrists and helped me clap when I got tired of clapping for him. I loved the expressions on his face and the pure joy it radiates. I enjoyed watching him and his mom play and laugh. She doesn't feel sorry for him at all. She rather makes him feel comfortable with his special way of interacting with this world.

         Although the discrimination against a person with Down Syndrome or any sort of intellectual and physical disability is universal, Ebeneezer is relatively lucky that he was born in a country  where there are plenty of resources to accommodate a disabled person. Our short time together had me thinking about those who are back in Ethiopia chained to a leg of a bed or locked up in a dark room because their families are ashamed of them. The World Vision Africa estimates about 10% of Ethiopian population lives with disability... that is OVER 8 million people. I do believe the number is far beyond what WVA has estimated as most of them are hidden from the society.
        There are less than five schools in Ethiopia for those with visual or hearing impairments, and absolutely none to assist children and adults with conditions related to mental disability. The fact that majority of the population believes that mentally disabled person is cursed by God or possessed by devil has robbed millions and millions of adults and children from their basic human rights.
            Solution arises from discussion. The first step definitely will be educating and creating an awareness among our community about the causes of mental disorders. Let's start a dialog among our families and friends about intellectual disability and keep the conversation moving with action to bring about a change. Let's this be our mission until we see a real change happen.

     Please share if you know of any efforts that are being made to bring awareness or serve those with the impairment in Ethiopia.

Update: How awesome is that a day after my post I came across an article on BBC.co.uk on a journey of an Ethiopian family with an autistic child?  Check it out http://www.bbc.co.uk/news/world-africa-14991267