Tuesday, March 10, 2009

"So, Refilwe, You're Retarded?!"

by Erin Gannon

When I was in second grade I went through a bunch of tests and was eventually told that I had a learning disability. The word “dyslexia” meant very little to me but as I got older and started to see clearly that my mind really did work differently than others, “dyslexic” became a word that described me, a part of my identity.

I was raised in a family where my father was involved with disability rights issues for his entire career. Growing up I knew many adults with all different types of ability and disability and I was raised with a universal respect for people. When I was identified as dyslexic, my parents sat me down, explained to me that this was how my mind worked and I should never be ashamed of it but I should also never use it as a crutch. This conversation with my parents created a simple framework for understanding myself as a person with a learning disability – there are things I cannot do but there are many, many things I can do and I am proud of my mind which is indivisible from my disability. I went on to study art education and I did my Master’s thesis on the intersections between disability rights and art education practices. I chose to locate the rights of all people with disabilities in both my personal and professional lives.

I brought my belief in disability rights with me to South Africa, packed along all of my other cultural baggage. I knew support for people with disabilities in rural villages would probably not be at the same level as the support people get in the US, but I didn’t know what to expect.

Very early on the simple fact hit me that if I attended the schools in our training village (or in my current village, or really in most villages) I would never have learned to read. I would have probably dropped out of school by the end of primary school. I would surely have been told I was “slow” and possibly been beaten for my inability to keep up with the “clever” students in my classes. The educators in my life are incredibly hard working and dedicated, but they are under trained and the concept of a learning disability is pretty far outside of their life experiences. Kids like me get lost in the chaos of trying to educate children in rural villages.

Once, I tried to explain learning disabilities to an educator I had been working closely with. She was complaining that there was a girl in her class who was “clever” but “refused” to understand some simple maths problems. I had worked with this kid before and although I’m totally not qualified to diagnose LD in a student, I did see some indicators that seemed to point to a learning disability. I explained that some people have learning disabilities and that this as a sort of gap between their intelligence and their ability to perform in certain areas. The educator looked at me and said, “So, she’s retarded?”

I responded that a learning disability was a different thing than mental retardation and that mental retardation was defined by a low IQ. I then took a deep breath and decided to do something I regularly do with Americans but had never done with an African, I told her about my dyslexia.

She seemed to think for awhile, she searched me with her eyes, and then she asked, “So, Refilwe, You’re retarded?!”

It was clear that she felt betrayed, she had been taking guidance and forming a friendship with a person who was mentally retarded. In that moment I was also wounded because I realized everything we had worked on had been undermined by my honesty. Also, undoubtedly we come from a culture that values intelligence and to have mine questioned was a matter of pride. It was an emotional moment for each of us. She felt betrayed, and I felt a little too close to my days in middle school when classmates had yelled, “short bus!” and did grotesque impersonations of people with cognitive disabilities as we left our LD tutor’s room.

I went on to try and explain further, I found some articles on learning disabilities and how to best serve children with learning disabilities in your classroom, I talked to the principal about the appropriate channels for educators to follow if they suspect one of their learners had a Learning Disability but in the end my efforts sort of flopped and no matter what I did I never managed to repair my professional relationship with that educator.

There is a fair amount of humiliation involved with having dyslexia and hiding it. I still shake when I have to write on a board in a workshop I am giving for fear that I will spell something wrong even though I have typed everything and spell checked it. In taxis I avoid the front seat like the plague because the simple computation involved in taking the money is beyond me. I do my best not to let my teachers see me counting on my fingers. I use all the hiding mechanisms I used in grade school because once again I’m trying to “pass” as someone without a learning disability.

I continue to be open with my Peace Corps colleagues about my dyslexia but I have made a choice to not share my status as a person with a disability with my South African colleagues and learners. This is probably not the most constructive thing, of course there are opportunities for education and growth in my sharing with South Africans about my life as a person with a learning disability. All things considered, though, I have made this choice in an effort at self preservation and a preservation of my professional status within my schools. It’s an extremely personal decision what parts of your life you chose to share in a culture that is not necessarily understanding of some differences. It is also important to your happiness and mental health to identify what battles you want to fight and which things are simply outside of what you will address in your service.

In your service you will probably encounter people with disabilities. One UN estimate put the worldwide percentage of people with disabilities at about 10% and stated that that number is higher (and harder to measure) in developing countries. You will also encounter a variety of circumstances that people with disabilities are living in. My host brother has Downs Syndrome and lives the typical lifestyle of a young man in the village, working on the families’ mealie fields and hanging out at the shop. I also know a family with a child with a severe cognitive disability and he is living at home with limited opportunity but unlimited love from his family. I know kids who have dropped out of school and we will never know if it was a learning disability that prevented them from succeeding. Disability is one of my “cultural lenses” Peace Corps is so fond of talking about and so this colors my experiences here.

Erin is a volunteer with the Education program in Northwest Province.

If you are interested in writing something for the Diversity Blog, please e-mail Jade (jade.lamb@gmail.com) or LaTosha (parkld82 at gmail dot com).

1 comment:

Anonymous said...

excellent post! I have done a lot of writing and research on the disabled around the globe. You should also know that people with LDs, are also considered stupid and retarded here in the states which is why I never tell anyone that I am LD.