A number of stories crossed my desk recently that made me think about how our culture assigns value to people and how this disadvantages families of children with disabilities.
First I read this New York Times piece about how we tend to equate a person’s income with their inner worth: You are the money you make.
This
measuring stick not only divides people socially, the authors say, but it harms
them at a personal level, making some meaner and others sad and fearful.
A
study referenced suggests mania and narcissism are the byproduct of our efforts
to achieve economic status, while anxiety and depression are a response to poverty.
These tendencies
are magnified when the gap between rich and poor widens.
For
example, the authors note that mental illnesses are three times as common in
developed countries where the differences between rich and poor are bigger.
“As larger
differences in material circumstances create greater social distances, feelings
of superiority and inferiority increase,” they write.
Then I read this study that uses the 2010 Ohio Family Health Survey to look at differences in financial and psychological stress levels between parents caring for children with and without disabilities.
The study
shows that children with disabilities are 3.4 times as likely to live with
parents with high financial stress and very high psychological stress than
children without disabilities. This finding was based on surveys with 210
households with a child with disability and 1,614 households with a child
without disability.
Because
U.S. parents are more likely to have to cut back on their work hours or leave a
job completely to care for their child with disability, they’re more likely to
experience significant financial problems. Side note: Yesterday we read this story about a single mom who was fired because she stayed home with her child with
special needs on a snow day.
In the Ohio
study, parents caring for children with physical limitations were almost three
times as likely to be unable to pay for basic needs; two times as likely to have
used up most personal savings; and two-and-a-half times as likely to be unable
to pay household bills.
Those caring for children with behavioural, emotional or developmental problems were almost two times as likely to have problems paying for medical bills; twice as likely to be unable to pay for basic essentials; and 1.7 times as likely to have used up personal savings.
Those caring for children with behavioural, emotional or developmental problems were almost two times as likely to have problems paying for medical bills; twice as likely to be unable to pay for basic essentials; and 1.7 times as likely to have used up personal savings.
Overall,
the families of children with disabilities were 4.2 times as likely as those
without to be classified as having serious depression and twice as likely to
need treatment or counselling for mental health, substance abuse or emotional
problems.
They're facing two cultural stigmas: The idea that disability somehow reduces a person’s value, and the notion that reduced income, as noted above, further erodes one's worth.
They're facing two cultural stigmas: The idea that disability somehow reduces a person’s value, and the notion that reduced income, as noted above, further erodes one's worth.
Yesterday I
read this blog post by Joel Yanofsky, author of Bad Animals, a memoir about raising his son Jonah,
who has autism.
In it, he
recounts a situation many of us can relate to. You’re at a party, talking with
someone you’ve never met, and they begin fretting about which university their
child is going to get into. It’s a kind of twisted social-ranking game for
party-goers, because you know that as soon as this parent gets the largely feigned angst out of their system, they’re going to turn to you and ask about your
child’s university prospects.
Joel
writes: “She began describing her son’s efforts to find a good CEGEP – CEGEPs,
here, are the equivalent of U.S. junior colleges – once he graduated from high
school. I knew, of course, where the conversation was headed and braced myself.
“Your son
must be thinking about CEGEP, too,” she said.
“Jonah is
on the autism spectrum,” I said. “He attends a special needs school. College
isn’t likely to be in the picture.”
A long
silence followed; it seemed long anyway. There wasn’t much for her to say. She
hadn’t said anything wrong. If anything, I felt a little bad for her. I’ve come
to terms with the fact my son has autism, but that doesn’t mean I’m not brought
up short, on occasion – reminded all of a sudden that your life, his life is
going to be very different from the lives of other people. It’s what I call the
“what-if-moment” – the moment you can’t help wondering what if your son didn’t
have autism. What would his life, your life be like?”
The crux of
the matter is that families like ours are different. Our kids may or may not
achieve conventional success. Hopefully they’ll spur us to question what a good
life is, and open a window in the minds of those around us too. Maybe we'll help others see that our culture's values could use a tweaking. Instead of focusing on how much we can get in life, perhaps we can focus more on how we connect.
Following
the death of actor Philip Seymour Hoffman this week, I saw this fascinating interview he gave with the philosopher Simon Critchley. The two chat about what it means
to be happy.
Hoffman quickly discredits the idea that happiness is pleasure. “I would definitely say pleasure is not happiness,” he says. “There is no pleasure that I haven’t actually made myself sick on.
Hoffman quickly discredits the idea that happiness is pleasure. “I would definitely say pleasure is not happiness,” he says. “There is no pleasure that I haven’t actually made myself sick on.
“I think I’m
happy when I’m with [my children] and they’re okay,” he continues. “Something
happens in that moment when they’re okay and that’s an important thing. When I
see them enjoying each other and then they let me enjoy them in turn…that
brings a feeling which I would say is happiness.
To which Critchley suggests that happiness isn’t something internal or something we can stockpile, like money, but that “it lies without. I think it lies in our very specific relationships with people.”
Which helps
explain, I think, why we parents find joy in our children, regardless of their abilities or health. There’s something about the presence of our children—our
relationship with them, separate from what they can do, how well they do it,
and the way other people see and evaluate them—that can fill us with contentment.
If only we
didn’t have to justify them to others.
This is very true, and very interesting. I completely agree with the last part when you stated us as parents find joy in our children regardless, just being around my littl one brings joy, and the moments we see we cherish. Your right. Why should we have to justify to others?
ReplyDeleteI love this post and hope it'll be widely shared. Thank you.
ReplyDeleteThanks Elizabeth and Joanna!
ReplyDeleteHear hear! Louise!
ReplyDeleteIsn't it statistics like this that make parents abort/relinquish their children with disabilities? How do you respond to people who use such statistics to justify thinking of people with disabilities as "burdens"?
ReplyDelete