By Bree Robertson
It was the World Congress for the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD).
My presentation was about my self-directed life, which is possible as a result of my having a micro board.
I shared how I get to decide what I do and when, from the time I get up to where I go during the day, to who I do it with.
I get a say in who supports me and how. I get to travel to lots of places, close to home and far away.
You can learn more about microboards here http://www.velacanada.org/ .
I wanted my audience to learn that no matter your level of disability, you can lead a good life, full of fun and adventure.
You can control your life, with the proper supports.
For me this is important because I am a person who can literally do nothing for myself, other than breathe, and yet I have a great life, doing what I want to do, when I want to do it (within reason of course – I have to be safe, and my money isn’t exactly unlimited). I really wanted people to learn and remember that despite my obvious limitations, I enjoy my life.
It was difficult getting to Australia. The flight from Vancouver to Brisbane was almost 14 hours! Then we had to change terminals to catch our flight to Melbourne.
We had lots and lots of suitcases, and getting them from one place to another wasn’t easy for Mom, Dad, and Colleen (my caregiver who went with us). I got to travel in Business Class for the long fight with my Dad, and that was great. Of course the people in Australia speak English, but they have different words and terms for some things, and they have a strong accent, so at times it was hard to figure out what they were talking about.
After the conference, we rented a van with a wheelchair lift and toured around a bit.
We saw some interesting places and things, like koalas, penguins, kangaroos and wallabies (a smaller cousin of the kangaroo). We saw some nice scenery, and beautiful beaches.
My mom and dad did most of the preparing for my adventure. The travel arrangements were the most difficult.
We talked a lot about how long the flight would be, and talked to our family doctor about it too.
We made long lists of everything we needed to take, and even bought a new, extra large suitcase to carry some of my stuff.
We didn’t know if we would be able to buy some of the things I need there so we had to take enough of everything just in case.
We bought special socks to wear on the long flight to keep our legs from swelling up and getting blood clots in them, which can be very dangerous.
We had to make sure we all had enough of our medications to last until we got home, and we had to make sure that we had medical insurance in case we got sick down there.
The best part of the trip for me was meeting new people at the conference, and sharing my story with them.
It is important to me to share my story because I know there are lots of people with disabilities and their families and other caregivers who don’t think that they can control their own lives, and that they can’t experience the kinds of things that other people without disabilities can.
I know that that isn’t true. My life, because of my micro board and my family, has been a great adventure. I have been to lots of interesting places in BC and Alberta where my brother lives.
I have also travelled to Disneyland 5 times, Vegas twice, the Grand Canyon, and lots of other places in the US.
I spend time with my friends, and family. I get to direct my own life, and so other people with disabilities can too- if they have the right kind of individualized funding from government.
To other self advocates who want to present and share your story, I say, “Go for it!” Be prepared, write down what you want to say, get help if you need it, and practice before the presentation.
It is good to have some pictures too to show people who you are talking about. Have fun!