The history of how society has treated people with developmental disabilities is a complicated one, and my own family story is part of that history.
First there was Buddy, a great uncle in the family who had Down syndrome, and in 1931 was placed in a large state institution. He died a few years later, and his sister mourned the loss of her older brother for the rest of her life. When she was well into her 70s, she started writing to state officials asking for his records. Eventually, after much persistence on her part, Buddy’s file arrived, complete with two black and white pictures taken the day he was admitted to Pennhurst. He is standing in a suit that is a little too big, smiling brightly, around his neck a placard with, not his name, but a number—3468, the number that decades later would still be used to identify his file. He had no idea that day he would never see his family again, and the pictures are heartbreaking.
Flash forward to 2016, and my daughter, Katie, lives with her family, surrounded by parents, siblings, grandparents, aunts, uncles, cousins, friends, pets, casual acquaintances in the community who remember meeting her long afterwards because of the warmth and joy she exudes. Their love and affection have told her over and over she is a person of worth and so now, at 25, she steps into the world with the confidence of someone who believes without question that she belongs.
So much of the difference between Buddy’s life and Katie’s is because of the unrelenting efforts of advocates—people with disabilities, family members, disability professionals, policy makers, concerned citizens. Thanks to them, institutions like Pennhurst are mostly a relic of a dark past, and a new vision of community living has taken root in our collective consciousness. On behalf of my daughter, I am grateful to the core of my being to all those people who had the vision and courage and stamina to fight for that change—and who continue to fight, because they know the hard work is far from over.
And yet, to be honest, when I hear the term full community inclusion, the un-nuanced mantra that everyone can be included in every aspect of community life, I struggle with the complexity of what that means for Katie. Because the thing is, while I know she has extraordinary gifts to offer, I also know better than anyone that bringing her into the community takes almost constant vigilance and effort. The difficult truth is, people like Katie in small doses, and when someone else, usually me or her father or a paid staff person, is there to take care of her. Few people want to be with her when it’s just the two of them, and almost no one calls to hang out with her just for fun.
And the thing is, I don’t think this means that people are being unkind. Most of us are busy juggling a lot of different responsibilities, and it’s hard to commit to taking on more work. I really do understand that. What I hope for is a community that recognizes both my daughter’s gifts, and what it takes to make inclusion more than just a vague ideal for her. Of course, there isn’t one answer to the question, How do we do this? And whatever makes sense today, may not make sense a few years from now. Katie will change. We all will. But each of us doing our part to figure it out—with honesty, compassion, a willingness to step outside our comfort zones, and a healthy dose of practicality—now that’s the kind of community inclusion that I believe will truly make a difference, not only in Katie’s life, but in all our lives.
Next topic… What Lies Ahead?