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?
6 thoughts on “I am my brother’s keeper. And so are you.”
Happy belated birthday to Joe. I hope he had a wonderful day. I recently listened to an interview on Wisconsin Public Radio of a philosophy professor on his book – written on the importance of family. Your post parallels some of what he was saying. I wish I could find the interview (and the name of the book he had written). It (as well as your post) have me thinking a lot about family in the micro and macro sense.
Kate recently posted…2018
Oh, I’d be interested in that. Sorry for the delayed response–the re-entry into regular life was a bit brutal. Hope it’s not been the same for you.
Like Kate, this post has gotten me thinking about family — the lengths we go to do what we can for them, what we hope for them, what we see in them — as well as community, because of course, you’re entirely correct: we ARE all our brothers’ and sisters’ keepers, we’re all connected; any hard-hearted notions that we aren’t are entirely missing the big picture. And yes, there have been leaps and gains, but there’s still a lot of work left to do, especially when it comes to the needs of the caregivers. That seems to be a common thread that is still not being adequately addressed by society/government, even here in Canada.
Thanks for sharing this, Rita.
Yes, I see the issues of caregivers in the experiences of my parents and in Cane (in dealing with his daughter’s needs). There doesn’t seem to be much feeling among those currently in power in the US that we have obligations to each other at all–unless it is to behave in ways that those in power want us to behave. But don’t get me started on that…I might not be able to stop.
I was married for over 25 years to a man that has Asperger’s Syndrome which is a form of autism. My ex-husband was not diagnosed until we had done so much damage to our relationship and while I could not stay in the marriage we remain friends. We have a son together and in so many ways this man still feels like family to me and I know that I am a part of his support system. Thank you for sharing Rita. I can identify with your thoughts so much.
Thank you for taking the time to write. I’m so sorry for your experience; my life has been impacted by autism in numerous ways, and I understand what you’re saying here. That lack of understanding that comes from not knowing what you are dealing with–it is so hard (for everyone involved), and it can create damage that can’t be repaired. I’m glad that you have been able to make your way to a place that sounds peaceful.