One of our staff is doing a workshop for parents on acceptance. She asked me for resources and I recommended these BLOOM pieces below. But first, a story from Adrian Anantawan, an internationally recognized violinist and former client at Holland Bloorview.
In university, Adrian chose to stop wearing the prosthesis he'd worn all his life (he was born missing one hand). He said the prosthesis was hot and heavy and didn't make it easier for him to do things. "The function was more of an image issue than anything else, and it lost its function as I became more accepting of my own body, and how I looked to everyone else," he told me.
1. 'Normal:' It's not all it's cracked up to be An interview with Dr. BJ Miller, a palliative care doctor who became a triple amputee after an accident when he was a student at Princeton.
"I wouldn't try to convince parents not to worry, or not to wish that their child had an easier go of things, but I would say over time spend your energy on finding things to celebrate in your child's differences. Turn your attention towards the differences, instead of away from them, and who knows what will come, either lessons or some weird new talent. Divorce yourself from the typical measures of success in life. It's a harder road, but a way more fulfilling one.
"I have a window into the inverse of this in my work. I see people all the time who do have a ridiculous wealth of conventional success and there's a lot of misery in there because they've never embraced their own internal metric, they've never done their own homework. Part of getting there involves letting go of the idea that 'if I just had this or that' or 'if I just looked like this or that' things would be perfect. In fact, it's my experience that it's the opposite."
2. Jean Vanier on accepting who we are An interview with philosopher and humanist Jean Vanier, founder of L'Arche.
"The danger in our society is to pretend that we're strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: 'I need your help.' That brings us together, because I'm not able to do everything myself. I'm calling out: 'Can you help me?' Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted."
3. Worried your not a good-enough parent? Barb can help Interview with Barbara Fishbein, a social worker at Holland Bloorview for over 30 years.
"We’re having a lot of conversations with parents about the importance of play and leading a normal life. I think parents need to be cognizant of over-programming, over-medicalizing and over-therapizing. They need to look at the amount of time their child is spending in therapy. If your child was a typical child, would you want them spending that much time in a rehab centre or hospital?
"Can you let go of some of that pressure on your child and yourself and be able to be with your child and appreciate them for who they are?
"I also strongly belief in the emotional life of a child and when we focus so much on physical rehab, which of course is important, we may forget to pay attention to the child’s emotional wellbeing—including how to nurture a feeling of acceptance and belonging."
I think Solomon has nailed the problem of discrimination within the disability community—and how it fractures all of our attempts to achieve equality as humans.
"Being blind and being gay are different, but having a selfhood that others perceive as undesirable is identical," Solomon writes in Far From The Tree.