Every now and then I am reminded, with a shock, that the world isn't what it used to be for many people with intellectual disabilities. Over the last few days I've been reading posts from or chatting with some people with disabilities that I met a long time ago. These are all people who I met at conferences or who had attended my trainings, or who had been introduced to me by their staff at some point or another.
We've connected now on Facebook and I follow their posts and, on occasion we catch up by messaging each other. This is such a normalized behaviour for me now that I don't think about it much. There's a lot of people who I interact with in this way. I don't automatically break these connections down into categories of people ... they are people I know.
But sometimes, when things happen fast, I do notice. I notice not the disability in particular but the life the person with the disability is living. I notice the engagement that people have in their world or with others in their community. I notice that they are caught up in life, in the best way possible. I think this is noticeable to me because I grew up in a world without disabled people in it. I began work in an institution because community services didn't exist or if they did they were in their infancy. No one could have imagined what was coming down the pike, no one knew that freedom was on its way.
I notice casual comments about going off to choir.
I notice pictures of quilts made that are on display in an exhibit.
I notice the announcement of being in a new relationship.
I notice countdowns to vacations to Spain.
I notice pictures, very funny pictures, from pub nights.
I notice pictures taken at family events.
As life is what life is, not all the posts are about things being done or people being met, there are also posts that speak of the human condition and of what it is to be living a real life, no longer under the forced protection of us, the others.
I notice painful breakups, love betrayed.
I notice jobs lost or jobs not got.
I notice loneliness.
I notice sad comments about being bullied.
I notice grief at family who aren't family.
I read through these, comment or like when necessary, chat when appropriate, but mostly I am bear witness to the fact that people with intellectual disabilities, who given freedom, live it. Freedom has it's joys and freedom has it painful moments, but freedom's opposite is captivity. And while captivity would have all the pain of freedom but none of it's joys.
There are people with disabilities who still live captive. Who still hear keys jingle in every pocket but their own. I am reminded, when I notice the lives lived by those with intellectual disabilities that I am connected with, that not everyone yet has the opportunity for freedom.
Our work isn't done.
Because there's someone, somewhere, captive who, given freedom would make a chocolate cake for the bake table at their community bazaar. Someone, somewhere in captivity isn't meeting a new boyfriend today at the chippy shop. Someone, somewhere, waits, to experience the highs and lows of freedom.
Our work isn't done.
The lives that people with intellectual disabilities claim, when free, shouldn't fill us with a kind of desultory sense of satisfaction and a sense that we're done now.
We're not.No
Thanks, Dave. I have a cousin -- my father's first cousin -- with a very mild intellectual disability who today would have gone to college, I'm sure, and been on her own from a young age. As it was, however, being born in the 1920s/30s (I'm not sure of her exact age), she lived a life that was a pale shadow. She stayed home. She never went to school. She didn't learn to read. She of course didn't learn to drive. She never managed her own money. Basically, she did what her mother told her, whixh was nothing much.
ReplyDeleteAnd then her mother died. And her sister tried to take over their mother's former job by moving her into her home in a town about 30 miles away -- but my cousin declared her independence. She moved back to the city she'd always lived in, got her own apartment, chose her own furniture, decided what church she'd go to, and the folks at the church, seeing her great untapped potential, helped her learn to read. With the help of an accountant, she manages her own money and balances her checkbook. She travels with families from the church. She discovered just what she'd been missing all those years, and she lives a happy and busy life today.
The next time I saw her after her mother's death, I was her houseguest for several days. She was a perfect hostess. She shared her home and her very full and active life with me. I'm *incredibly* thrilled at what she's done with her own life, after 60 years of being a hanger-on! I hope her sister is, too. I do know that she has so many friends and activities now, her sister has to book her in advance for holidays. :) I had always felt pity for her -- but no longer!
I wonder how many other people with mild intellectual disabilities like hers have spent a wasted life over the years at home, doing nothing. It's terrible what we've done to so many people out of "kindness." I'm sure my cousin's mom meant well; but people who mean well often do more harm than people who set out to do harm in the first place, I think!