Only Anecdotal

For the last several years, I have spent a good portion of my time advocating for people to remain in the communities they already know, or where they want to stay. But the reality much of the time is that sometimes it gets to be too much, either for the individual, or for the family and friends of that individual.

It is perhaps most difficult when the individual in question is a child. I see few children in my work now, but it is my experience with my own children that has shaped so many of my own ideas, and desires to create worlds that are more accessible and understanding. But change takes time.

Several years ago, I made a decision that changed everything for me. After ten years of advocating for better programs, better assistance, more understanding, I reached my own personal limit. My son, who has significant developmental disabilities, was already close to surpassing me in weight–and strength. The people I managed to hire as personal care attendants all ended up leaving, sometimes with injuries, sometimes just short of having them. I knew we needed more help, but under the circumstances, I could find no way to bridge the gap.

My son lives still with his dad now, but in those five years since he left my home, he has remained nonverbal, and has continued to grow. I worry about his future, wonder about the opportunities he may have had with better ways to communicate, wonder what may have been with more consistent training between home and school, with more in general.

In the end, my own home now is somewhat inaccessible… and it makes me sad to see so many barriers still being constructed in our communities when such fantastic–sometimes inexpensive–adaptations can be made to make our world accessible to more people.

I think about this often, think that in so many ways we limit people, and limit ourselves, when we do not think of solutions, when we do not fund healthcare and long-term care (or enough of it), when we leave people and their families with no choice but isolation.