I know it has been a long time since I have written. The reasons why are vast so I won't bore you with the details except to say that it was not that I didn't have material and subjects to write about but the opposite, issues cropping up one after another that I had so many things to write about I couldn't choose.
Joni Erickson Tada wrote in her book, "Secrets Strength", that it takes patience to live comfortably and adequately with disability. She recounts that rather regularly she contends with her own feelings about how the people around her provide her care and help her with daily tasks. Life is no less full because she needs help and she has adjusted to life with other people in it doing the things that people usually are able to do for themselves.
Recent events have caused me to stop and think about the dynamics of care and what that means for people with disabilities.
First, I am a child of the 1970s and grew up under the tough love rehabilitation model. Translation we only ask for help when you really need it and if you need help you've given up or given in to your disability. Second, there is no road map to being an adult with a disability. Thirdly, the first and the second do nothing to encourage communication and a healthy supported lifestyle. And the demons within are not the worst part.
The worst part is not being supported through these very difficult transitions. There are public programs of home care help but the aspects of community care are not a priority and are squeezed dry by sheer numbers and competing principles. The result is the service is there for some but not for others and to get service done properly and live adequately you need patience and sometimes charm. Moreover, people with disabilities cannot be dealing with care issues alone in silence. We must allow ourselves to talk about it. Talk about what goes well as well as those things that are going well. Talk about strategy. Share knowledge. We need to learn the importance of support to each other. We cannot be afraid to be judged or afraid to direct our own lives. Above all else we need to start talking. Having a disability is part of our lives not all of it. The hardest part is feeling alone without support. If we are able to communicate and close those gaps in support quality-of-life for people with disabilities would be and should be understood a little better. So let's start talking!
