I’m thinking of my brother Joe on his birthday today. For two weeks each year we are the same age, but on New Year’s Eve he takes a step ahead of me again. In the back of my mind, all through my life, I’ve known that one of my roles is to be my brother’s keeper. It is only in recent years that I have been able to see him more fully for who he is in his own right, separate from me.
Joe was not accurately diagnosed (with autism) until we were in our early 20s–which means that his entire formal education failed to address many of his actual needs or develop his intellectual potential. Academics were basic and played a minimal role in his schooling, which is outrageous to me now but did not seem wrong then. Joe was already 10 when we passed the law that guaranteed a free and appropriate education to all children, and I think my parents were grateful that he was in school at all.
While the shifts in understanding and acceptance of autism that have happened in our lifetime are wonderful to see, wondering how things might have been different for him and our family if he’d been born at a later time is a mental path I rarely travel down because it is too painful (and pointless). A lack of services and understanding have limited his life to a degree I can hardly express. The world is a dangerous place for a young, mute man who cannot/will not comply with social norms, such as following directives from police officers. My parents have done what they felt they needed to do to keep him safe in it. (Maslow’s hierarchy of needs for the lose.)
It has long seemed wrong to me that Joe’s care has been primarily the responsibility of our family alone. I am my brother’s keeper, but Joe is his own person, with his own feelings, needs, habits, and dreams. (After “graduating” from high school–which meant only that he turned 21 and was no longer eligible for educational services– he told our dad that he wanted to go to college, “like Rita.”) Joe belongs to the world as much as any of us do. What happens to the Joes in our society who do not have a safety net of family? What happens to Joe if the one beneath him frays and cannot hold? How do we value and care for those among us who cannot fit into all of our round holes? Or any of them? How can we better support them in being their full, autonomous selves?