Being a parent comes with a lot of responsibility. Being a parent of a child or children with special needs brings even more responsibility, but until a few days ago, I hadn't thought of one particular area of responsibility - teaching and leading our communities to a deeper understanding and acceptance.
Often it seems easier to just stay home than to face the difficulties presented in our communities. We have to worry about accessiblity, about the stares or looks of fear/disgust, or keep ourselves from getting angry if someone so obviously moves away from our children as if they are afraid of catching something.
We have to figure out logistics - where is there a restroom that is big enough to accommodate a wheelchair? - will a restaurant provide the type of food my child will eat? - how do I move around the mall with all the equipment my child must travel with? And what happens if it rains or snows or is icy or is too hot or.....?
Then we have the physical requirements involved in going out into the community - will my vehicle hold my child's wheelchair? - can I lift it and him/her in and out of the car without hurting myself? - will there be adequate handicapped parking? - and are all the travel surfaces wheelchair friendly?
It often seems like a short trip to the grocery store requires an hour of planning and preparing!
But if we don't go into the community with our loved ones, we are doing a huge disservice not only to them but to all the people whose path we cross. People whose lives have not yet been touched by disability need to see that our loved ones do not need to be locked away, kept out of the community. They need to see the love, the patience, the fun, and most especially the value of people with disabilities. They need to not fear disability. They need to understand that everyone has bad moments, not just people who happen to have a disability. They need to see and experience the supports that we provide so they can learn to provide the same things. They need to see that our loved ones who happen to have a disability are so very important to us and others. They need to learn that disability is a normal part of society and not something to be feared or avoided.
As parents we are responsible for helping our communities understand all this. It's not easy sometimes, and it's not like we have lots of extra time for this, but we must. We must do everything we can to make the world a better place for our families and for all people with disabilities who come after us. I refuse to let my children be isolated or excluded from any part of life whether it presents difficulties for me or not. They deserve it, they have a right to it, and I intend to see that they enjoy and participate fully in whatever aspect of their communities interest them. It's another of my responsibilities, and one that I am happy to carry out!