Friday, March 31, 2017

Against the Erasure of LaVonnya Gardner

Image of LaVonnya Gardner's AAC board with the written
 and PEC symbol sentence "I use AAC everyday and I Love it"
written on the display panel above the PEC images and wordsin orange, pink, red, green, and light blue squares. Credit
LaVonnya Gardner, Twitter. 
 Black, deafblind autistic activist LaVonnya Gardner died suddenly in late August of last year. She was someone I was proud to call a friend.

Her death was particularly heartbreaking to me and mine. To understand what LaVonnya simply existing meant to me and my son Mustafa, you have to realize a few important details. LaVonnya understood what being blind meant, so we had that common ground because I was once blind for a time and it was assumed I would wear a prosthetic left eye and be blind permanently. LaVonnya understood what it meant to a Black disabled parent to an autistic child in the DMV (the District, Maryland, and Virginia) because she was the mother of an autistic daughter. LaVonnya understood what it meant to be a nonspeaking autistic who used AAC to communicate because she was a nonspeaking autistic adult who used AAC to communicate. LaVonnya knew what it meant to navigate the world as a Black nonspeaking autistic adult, and she had good, practical advice for my autistic nonspeaking son about survival as a Black autistic male in a hostile world.

She built a library of YouTube videos and AAC related social media posts, knowing her own import to nonspeaking autistic Black youth. She, activist Lydia Brown, and others were the founders of The Washington Disabled Students Collective. My hope was that her body of work would live on should she pass away and that she might also leave the legacy of her intellectual property for her daughter and others it might help.

We had an agreement to meet in the Smithsonian gardens with our kids in the Spring. You really don't understand the impact someone has on your life until they are suddenly gone.

LaVonnya Gardner.  image of a Black woman with long braided hair
wearing a pink blouse credit LaVonnya Gardner
I realized in February that the Amplify Autistic Voices project, which I had decided to end, had LaVonnya speaking about herself in her own words. I stopped my plans to delete the blog. I could not erase her. After her death, a relative she did not get on with insisted a name she left behind to move away from an abusive past was her name. That person disregarded her final wishes and tried to collect money from LaVonnya's grieving friends and colleagues. Dozens of her instructional and advocacy videos are erased from her YouTube channel, and only two videos on her Beautiful Unicorn channel remain.

LaVonnya helped many parents and autistic children, both independently and in support groups. She had a patience with parents that I sometimes do not have. She was an activist who stepped up as much as her health allowed. She was excited and looked forward to working with my son and spending quality time with him because they were so similar. I cannot begin to express what the loss of her AAC instruction videos means for those who can't call or message her anymore.

If you have any photos, videos, digital content of LaVonnya's please post it on her memorial Facebook page. I don't know anyone else like her, and I doubt I ever will.

LaVonnya Gardner was my son's role model. She was the living proof that nonspeaking deafblind persons could live, love, produce and parent disabled children, live autonomously, and speak up for themselves.

She was a beautiful Unicorn who should not be erased or forgotten. Help me make certain she's remembered.

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