Five years ago my disability started declining, from tremors when I walked to seizures requiring walking sticks to the inability to stand, ultimately requiring a wheelchair. I started to hear from so called caring medicos “well they’re doing great things in Germany” or there is an advocate on the west coast or Oregon that has a support group or a “you can do martial arts again I saw a YouTube video from Russia about a Black Belt with no legs?”
There was one huge problem with his rhetoric. I was broke and in New York. I am never egotistical enough to believe that these idiots woke up that day and singled me out, so if I am getting this crap so are all of you.
I pulled my doctor up on it, and asked him why in the 21st century is it necessary for us to go to them when with Skype and the internet why can’t they come to us? He scoffed good luck with that!
I started researching why I needed good luck, everyone scoffed for over 3 years and doors slammed and phones hung up. Along the way I met the heros of the disabled community, the Margi Tripanis’, the Paul Caunes’ and the Kareemah Batts’ and the amazing talents like Riia Talve. I also met, one year ago, a man called David Korse who since 1979 had basically been doing a version of what I had in mind, it’s called the Abilities Expo. I decided to ring him. I laid out the plan. I told him “let’s get the brightest and the best to either stand in a room or Skype in.” When I finished he paused, cleared his throat and he said “send me your proposal.” I did and two nervous weeks later he said he believed in my vision and “Voices from the Net,” was born.
On May 4th in Edison, New Jersey, I prove the medical community in the USA wrong. You see I didn’t need luck I had everything I needed, I always have and I don’t give up. I learned long ago when your disabled, if you give up on you there is no one else. Sure your family might be there if you’re lucky, and the doctors might go through the motions and the holy will pray but if you have closed up shop on yourself all those gets told return to sender not at this address.
Four days from now I will wheel my stubborn ass up onto a stage and clear my throat, and say “Thank you for coming Ladies and Gentleman, welcome to the First Annual Symposium of internet advocates and heroes of the disabled community — Voices from the Net.”
If one parent of one child learns something, if one disabled person who is like many of us having their rights stomped on finds an ally and if one newly diagnosed person learns they are not alone then everything I worked for, every asshole doctor who ever laughed at me, every so called expert I ever sufferred was worth it.
So to my darling Ella, for putting up with my single minded vision and working to make it happen thank you. To David and Sarah from Abilities Expo, thank you for not hanging up. See you all Friday folks, let’s tear down the walls to information and accessibility together.