A Hearing Loss & Late Deafened Blog

Angels of the “Very Other”

In captions, Closed Captioning, Deaf-Blind, Deafness, Disability Rights, Hearing Loss, International Deaf Culture, internet videos, Sign Language, Support on July 9, 2013 at 8:54 am

by Michele Linder

“Elizabeth Kamundia is a lawyer working on disability rights in Kenya. Through an Open Society scholarship, she studied disability law at the National University of Ireland Galway and graduated in 2012. She was awarded a gold medal for excellence after finishing at the top of her class.

Kamundia’s journey into the field of disability rights began in 2005 when she started learning sign language. As her understanding of the challenges facing people with disabilities in Kenya grew, so did her dedication to the field. “No matter where they live, no matter where they come from,” she says, “everybody wants to be able to have choice in their lives.”

 
Elizabeth Kamundia’s words:  “I sort of began to see, oh, it’s not just deaf people who are facing systemic issues, it’s also blind people, it’s also people with mental health conditions who are living within society but very isolated, very other.  It was like they were living in Kenya but in a whole different world of their own. That got to me… just puzzled, really, puzzled, like what can we do about it?
 

In Kenya at the time, no one was teaching disability studies because it wasn’t felt to be marketable. I was thrilled when I got the Open Society foundations Scholarship to study a Master’s in International and Disability Law and Policy in Galway. It was like, okay, then so here’s a chance. You can go learn something, you can go learn this in details and maybe even become an expert in this. Work on the ground with it and try to change something.

I got back to Nairobi and within three days I’d received a phone call from the Human Rights Commission saying we are grappling with the issue of legal capacity and what that would look like in Kenya. Would you care to join us now that you should know something about it?  And I did have something to contribute. And that in itself was–that in itself was such a great feeling.

We don’t have a legal capacity policy in the country at all. And now I am equipped to be in a position to influence something like that. Disability issues haven’t been seen as human rights issues for a long time. No matter where they live, no matter where they come from, everybody wants to be able to have choice in their lives and to have control and to decide things for themselves. Equal access to health care, equal access to education. To be part of society, to contribute and to be valued for that contribution.

The more the knowledge, the more the awareness, the more the sensitization of people and communities, I think the greater the impact and the change towards, the move towards, inclusion will happen.”

When I saw this wonderful video shared by the Centre for Disability Law and Policy, NUIG Facebook, highlighting one of their amazing graduates, Elizabeth Kamundia, it made my heart light.  I left this comment there:  “This young woman is amazing, and she has touched me because I make some of the same points–people with disabilities want to be equal, they want choices, control, the ability to compete, and to contribute positively to their communities–in my captioning advocacy work. Some days I lose hope when all I hear is “It’s too expensive to provide quality captioning.”… to watch someone with so much spirit, education, knowledge and know-how speak of the coming inclusion with such certainty and optimism gives me hope on the worst days. I know what it’s like to be “very other”, and “living in a whole different world”, and the fact that this young woman noticed those of us who are different and it “got to her (me)” and caused her to puzzle over what could be done about it just touches my heart so much.”

This video had it all.  I clicked the link, pressed the play button, and there was Elizabeth Kamundia speaking about things that are dear to my heart and I immediately knew what she was saying due to the quality open-captions.  The video brought tears to my eyes, not because I could immediately understand everything being said in the video, but because, as I watched, I saw a young person speaking about me and all of those “very other” people who need to be included, who want to be included, and who deserve to be included.  And, she was puzzled by our separateness and wondered how she could make our lives better. Elizabeth outlined perfectly how a disability causes one to live “in a whole different world of their own”… a world that can be, and is, so isolating.  The genuine care I saw in her face, as she spoke, touched my heart and I was proud that organizations and institutions such as the Open Society Foundations and NUIG Center for Disability Law and Policy could provide this young woman with the knowledge she needs to do something about it.

Just as Elizabeth Kamundia has something to contribute toward defining legal capacity in Kenya, we who live our “very other” lives due to disability have something to contribute, if only the world would include us.

I too am puzzled by the acceptance of the separation of people with disabilities, and I’m puzzled as to why organizations whose sole purpose seems to be seeking to equalize the world for those with disabilities fail to provide access themselves.  There is much irony in captioning advocacy, and on occasion I lose heart, as I imagine do others who make a great effort to seek accessibility for those who need to see what the world has to say due to their inability to hear.

Thankfully, just when I’m wondering how effective I’m being and am questioning whether the time I put into advocacy is worth it, along comes a young person like Elizabeth Kamundia or Rachel Kolb with such hope in their voice and caring in their face.  No, I wasn’t able to hear the audio of what Elizabeth said on the video, but because someone had the forethought to include quality open-captions, I could see what most everyone else hears.  That’s no small thing to a person who wants to be included and to have choice in their life.

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