After the UMDF conference last year, I thought about all the people I saw with a vision impairment. How could I help? I submitted a proposal for a workshop addressing the needs of people coping with vision loss and their loved ones. UMDF liked the idea and put me in touch with the head of the L.H.O.N. group.
L.H.O.N, which stands for Leibers Hereditary Optic Neuropathy, is a vision impairment caused by mitochondrial disease. Even though I’m an Orientation and Mobility Specialist with a Master’s Degree in Vision Impairments, I had never heard of this disorder (more about L.H.O.N. in a later post). Maria (Girl Gone Blind) and I talked on the phone and she helped me develop my presentation. I would give the talk twice, once for those affected by L.H.O.N, and again in the general assembly for anyone dealing with other forms of vision loss. I put together a Power Point presentation, wrote my bio, packed my suitcase, and flew to Washington DC (Alexandria, VA to be exact. Just across the Potomac river).
People asked me if I was nervous. Funny thing, I wasn’t. The idea of talking to a room full of interested strangers didn’t worry me at all. I have information, I love to teach, they want to learn… perfect. However, as I stepped in front of a crowd of people with a vision impairment and their loved ones, I suddenly felt afraid. What did I have to offer these experts? They were living with vision loss while I’m just a teacher who can show them how to travel with a white cane.
That’s how I began. I focused my talk on communication between the person with vision loss and their family and friends. The only way to be an effective partner is through respect and communication. I did an abbreviated demonstration of Human Guide technique and moved on to how to support a person with vision loss in crowded and unfamiliar areas. Basically, “don’t ditch your loved one at a party.” After my talk I heard mixed reviews. Some people gave me a big thumbs up and said it was “great.” Others felt I didn’t present anything new and was “preaching to the choir.” I realized that mostly the people who thought it was great were people without vision loss. The people with vision loss were mostly bored. Oh well… like I said, they’re the expert.
The next day I gave my talk to the general assembly. However, as I began talking about supporting your loved one with vision loss, a woman raised her hand and asked, “Is this just about blind people?” I was afraid that would happen. The conference program left out vision loss in the description. Standing in a room filled with people looking for information about wheelchairs, walkers, and coping with changing mobility, I realized I had no idea what to say. So I took a deep breath, threw my notes aside, and started talking about my own experience working with my daughter and her changing needs. I also talked about working with older adults and how they struggled as their needs increased. Thankfully my audience started talking and sharing stories. I stepped back and facilitated the conversation. Dropping my teacher role, I became the advocate, a role I’ve played for 20 years. Once again, I was not the expert in the room; the people sharing their stories about declining mobility and strength were the experts. My talk went in a completely unexpected and unplanned direction and I loved it!
It’s funny that I was more nervous with my planned talk in front of an audience of mostly visually impaired people than I was winging it without notes. All those years I spent doing improv paid off. I used my theater background, advocacy and mediation training, and what I’ve learned being the parent of a child with a disability, and just followed my gut. But if the people in the room hadn’t starting talking, I would have been screwed. Once again, thank you experts!
I hope to give more talks in the future. I love teaching and interacting with people. My next topic will be on advocacy and independence. Need a speaker?
My next blog post will be about the day I spent lobbying for health care on Capitol Hill. This just happened to be the week the vote on repealing The Affordable Care Act was being debated by the GOP. Interesting adventure.