By Lena Rivkin
My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations.
Michael J. Fox
Aphorisms abound on the subject of acceptance and expectations- it may be the most Googled search on earth, probably right after the Royal Baby. And as much as I understand and comprehend that my personal happiness is directly related to my acceptance of everything, including my brother Phillip’s autism, my happiness also expands or contracts in direct proportion to how I accept how other people relate to Phillip. This expectation/acceptance dance remains the largest life lesson I grapple with.
Growing up with an older brother with autism, in a time where ‘autism’ didn’t even exist as a diagnosis, and the term ‘retarded’ was commonly used by doctors and lay people, I still feel my (now deceased) parents’ silent pain in the face of relatives and very close friends who failed to provide the support my parents truly needed.
To be fair, Phillip grew up in a time when if a child wasn’t hitting the usual childhood milestones, people preferred to act as if the child didn’t exist. Doing or saying nothing was akin to not doing or saying anything ‘wrong’. While the ignorance of the general public towards Phillip was to be expected, it was the close friends and extended family members who politely pretended Phillip didn’t exist that did the most emotional damage to my parents. However, my parents remained deeply connected to and involved with the ‘normal’ children of their extended family.
But my parents didn’t let the fear and ignorance of some ruin their ability to love, support and protect my brother. In the absence of social networks, they created their own. They became activists for children who others would prefer to ignore and surrounded themselves with like-minded and action-oriented people. My warmest childhood memories include large boisterous gatherings around my parents’ large round dinner table, full with food and drink, where we wrapped donated gifts for children with special needs.
One of the greatest gifts my parents gave me was to teach me to accept other people’s limitations. I can still hear my mother’s distinct voice as she explained that other people have their own discomfort and fear with things they don’t understand. And she always finished this advice with, “Anything else you receive from others is gravy”.
I have striven in my life to stay appreciative of ‘the gravy’ my brother and I have been lucky to receive from others. I remain touched and impressed by my friends who send Phillip postcards and gifts they know he would be excited about- like scotch tape and wall calendars- even though these friends have never even met him.
While I remain distressed at how the numbers of autistic children have grown in the ensuing decades, I am heartily encouraged by the grass roots activism that has also grown in direct proportion- awakening deeper levels of awareness and compassion in the global community. Even so, the plain truth is that the people who are most involved with autism awareness are primarily those directly affected by it.
Almost more important than how to deal with autism when it lands in your family’s collective lap, is how to accept the lack of support you may encounter, even from extended family members. As Alan O. Ross wrote so eloquently in The Exceptional Child in the Family, “Perhaps the most insidious stress is the social isolation… when friends retreat, or when parents withdraw from friends’ pity or incomprehension. The birth of a healthy child usually expands the parents’ social network; the birth of a child who is disabled often restricts that network.”
The insidious stress of the social isolation is deeply ironic- as it is the families with autism who need the social network far more intensely than the families without it.
I still find myself surprised that not everybody has immediate access to their own reservoir of empathy. Almost as soon as I feel the familiar well of resentment filling up as some relatives barely acknowledge Phillip’s existence, I strive to not focus on their fear and discomfort. Instead I fill my brother’s life with the many people who plunge right in and love us for precisely who we are.
So, just as we strive to find universal acceptance and love for our loved ones with autism, the more compassionate solution is to accept all people, despite their limitations, for who they are even if that means that their line in the sand is the line that keeps autism (or any other problem) far, far away from them.
While we intrinsically gird ourselves against the marrow of sadness that is an inescapable part of life, to have this human frailty embodied in the sheer physicality of another person is difficult for even the most cynical or positive of people to acknowledge. None of us truly want to accept that there are rarely happy endings in life. Perhaps this human frailty exists to help us grow the very compassion necessary to be a vital, useful, giving human being.
A few weeks ago, my colleague, Sheila Lowe and I spoke to the students at Hillsides, an educational & residential facility for at-risk children and teenagers who are missing essential components of ‘normal’ family life. Some Hillsides residents are children in the foster system, or children whose parents are incarcerated or otherwise incapable of caring for their children. Some of the children have serious behavioral and emotional issues, which hamper their ability to attend ‘regular’ schools.
While we were simply doing a PowerPoint presentation on graphology, we analyzed the writing of Jessica Cox, a young woman born without arms, who despite her challenges flies planes and drives cars and is a cheerfully productive young woman. The teenagers were like little sponges, deeply engaged and fascinated in our talk. It was immensely rewarding for us as much (if not more so) than it was for them.
I was again reminded of the lessons Phillip has taught me. The biggest gift we can receive is giving ourselves away. We cannot underestimate just what we are capable of giving- but in truth, we all routinely underestimate that whatever we are capable of giving will be more than enough. Even one simple act or gesture can be a force for good in the life of another person.
I grew up being my non-verbal brother’s voice. I must speak for him, because he cannot speak for himself. As someone who goes out of her way to avoid the spotlight, being Phillip’s voice has given me the power and fortitude to express myself in ways I never imagined. Being Phillip’s sister has stiffened my spine and strengthened my resolve, as well as opened my world-view. In short, I simply cannot imagine my life without him.
Phillip has a full and interesting life. No one can judge the depth and width of exactly how much he lives. The fact is that Phillip has changed me, and my family, more than we have been able to change him. And while I may not know everything that is going on inside of him, his existence makes me more mindful and accepting of others, and for that I will forever be in my brother’s debt.
Lena Rivkin, MFA, is an artist and graphologist living in Los Angeles.