Facts & Arguments Essay

Sheltered from my son

Having a disabled child means learning to stand up to ignorant people, people who are afraid of my son

MARCY WHITE

From Monday's Globe and Mail

March 2, 2009 at 12:00 AM EST

I was shocked. Completely and utterly shocked. I was so surprised by the stupidity of her comment that it took me a few moments to find my voice and mumble an astounded, "Too traumatic? Did you just say it would be too traumatic for young kids to be around disabled children like my son?"

Being a parent of a severely disabled child is indescribably difficult and filled with so many challenges, not the least of which is a constant battle against fear borne out of ignorance. But there is no reason to be scared of my son. His disability is not contagious, though his laughter is. And it is so hard to deal with people who don't understand that.

Around the time that new mothers are starting to feel comfortable with their new bundles of joy, I was thrust into the terrifying and unexpected role of protector. Not in the typical "I won't let anyone push you in the playground" way. I was learning to stand up to ignorant people, people who were afraid of my son.

I am not naive enough to believe that everyone must accept my child without hesitation. He is different. He can't sit by himself, he drools and, although he understands everything that goes on around him, his communication skills are limited to yes and no responses.

It's not easy to look at a beautiful little boy, with thick dark hair and a giggle that makes you want to laugh too, in a body that doesn't work properly.

But when someone takes the time to come close to him and look a bit deeper, they can see so much life and mischief in his gigantic green eyes, lined with enviously long black eyelashes.

Over the course of Jacob's six years, I have seen that young children are incredibly accepting of differences. When he was 3, Jacob attended a summer camp with "regular" kids. Although his bunkmates understood he was different — he couldn't walk, talk or eat like they did — he still fit in. When the group participated in a scavenger hunt, some kids helped him collect his pieces without a „©counsellor's prompting.

At the end of another summer-camp experience, the director called to tell me she thought the staff and other campers benefited at least as much from being around Jacob as he did from being at camp. She told me a group of children would take turns sitting next to him, recording their voices on his communication switch, which he uses to make himself understood, and reading to him after lunch. I was not surprised, but I was proud of my son.

Two years later, at another camp, I was told that Jacob had made a new friend. A few days into the session, this friend announced that Jacob was her new "number 1 best friend." By the following week, Jacob was Taryn's boyfriend. She told everyone she knew that she liked to "kiss his eyeballs." At 6 years old, 10 days younger than Jacob, this little girl wasted no time getting to know him.

Jacob's experience with typically developing kids has always been positive — young children tend to gravitate toward him, not savvy enough to notice their parents' discomfort over how to react in the presence of a severely disabled child.

So when I was told by a senior administrator at a private school that exposing young kids to disabled children was not something the school would support, I was horrified.

We were discussing whether her Grade 2 students, some of whom knew my son, could perform their class play for the students at Jacob's school.

I questioned whether she meant the experience would be too traumatic for the students or for the teachers. She reiterated that according to her advisers, it would be "too traumatic for the students."

As this discussion was unfolding, the stupidity of her words reverberated in my head. My amazement at her ignorance grew until I wanted to scream. This person was a senior educational administrator but was devoid of confidence in and understanding of her students' abilities to interact with others who were different.

My heart was beating so quickly. I felt sick to my stomach and angry at myself knowing that I had considered sending my twin daughters to this school.

After we ended the phone conversation and I allowed some time for my racing heart to calm down, I realized that some people live sheltered lives. They don't allow themselves to experience the joys that come from learning something new and being exposed to someone who is different.

This school is located in a beautiful building, has a lovely and colourful playground and modern facilities. But it lacks something so much more important — compassion.

I do not know a single person who would say their child has been negatively affected by my son. But I can list many people who would say their lives have been sweetened by spending time with Jacob and watching their children make him laugh his contagious laugh.

Marcy White lives in Toronto.



Letters to the Editor

Lessons from children
RICK STRUTT

March 5, 2009
Marcy White's essay eloquently comments on the attitudes not only of some of our schools' administrators and educators, but of society in general - the lack of acceptance of those with different abilities (Sheltered From My Son - Facts & Arguments, March 2). While our defin- ition of diversity has broadened to include people of every cultural background, we are still hesitant to expand that definition to include people with various disabilities. We know that children are generally blind to colour, background and ability. We know that when children learn together, they achieve together - not only academically but socially. They grow up to be adults who are tolerant, and will help build a society that is also tolerant and accepting of people, regardless of what differences they have. president, Community Living Toronto

Comments

Gary Kerr from Ottawa, Canada writes: Children are frequently more compassionate than adults. I wonder why we lose this capacity as we grow older. The school administrator in question is, hopefully, not speaking for the administration. Perhaps, more widespread awareness of his foolish and discriminatory comments will force the school to change their policy. I hope so.


C C from Canada writes: My brother has autism, so Mum had to fight the school system every step of the way. The kids always got it way better than the adults. If he got too stressed out, the best thing for my brother was to be able to leave the room so he could cool down. One of his particularly bad teachers didn't want this because he said all the kids would want to leave then. But the kids never brought it up at all, that was just what he had to do sometimes. Don't lose hope. And from Mum's experience, I recommend looking for other people in the same situation so you can get some support. And have someone to vent to! ;)


Salty Dog from Canada writes: Gary Kerr from Ottawa, Canada writes: Children are frequently more compassionate than adults.
-----------------------------------------

Huh? Laugh at anyone who is different and tease them mercilessly fits more with my experience.


stand up mimi from Vancouver, Canada writes: As the sister of someone with Down Syndrome, I too, have had "sick to my stomach" moments, brought on by ignorant adults. It's strange where this prejudice turns up, too. It has appeared in people who otherwise seemed reasonable, and like Marcy, I have been just stunned by their comments.

It's not about being a little uncomfortable. Lots of people are hesitant around those with disabilities, unsure of what to say or how to relate, until the ice is somehow broken. But there are others who are actually fearful and believe disabled people should be hidden from sight; that they are not really a part of our communities, a part of ourselves, perhaps not quite as valuable as the rest of us. Jean Vanier was quoted in the G&M as saying disabled people are "among the most persecuted people on earth."


stand up mimi from Vancouver, Canada writes: Yes, there are children who are mean. But in general, children are more accepting of those with differences than adults are.


Robert Slaven from Camarillo CA USA (in employment exile), Canada writes: Reminds me of the noodleheads in Britain who are whining about the host of a children's show on BBC who was (gasp!) born without her lower right arm. "OMGWTFBBQ That's traumatic!!!"

Bollocks. Attitudes like that marginalise human beings who just happen to be different. Good on the writer for standing up for her son.

Disclaimer: I have an autistic daughter (14), and I'm mildly autistic myself. I have no patience for "normal" people who don't want their Barbie-plastic dreamworld shattered by the reality of disabilities.


C C from Canada writes: I really don't know why anyone would find being around people with a disability or injury traumatic. I mean, your an adult. Grow up. Imagine actually having to live a difficult life.

I do agree that kids can be really cruel, but they are also much quicker to accept things the way they are. I think it kind of depends on how they first take something. If they think it's ok, it'll be ok.


Bob Smith from Oshawa, Canada writes: I was fortunate that my Dad was involved with kids and adults with metal disabilities. I remember him always indicating that the word "retarded" was derogatory to these people. But it was funny because at the time, the name of the organization was CAMR (Canadian Association for the Mentally Retarded). The name is not the issue, it is the behaviour of those that use it. From a pragmatic point of view, the word is correct... but from a user’s point of view there was a stigma and that was my dad's concern.

Again, I am fortunate to be in a situation to be blessed with people with disabilities. They truly know how to love unconditionally and this is what we need to learn from them. Truly strength can be made from weakness.

As for children being cruel, children are mirrors. Yes they all push boundaries, but we need to set the example. Kudos to you for writing this article and continue the good fight.


Fake Name from Canada writes: Bob Smith, I think the stigma attached to the name isn't really the issue. So long as there's a stigma to the underlying condition itself, it will just migrate to whatever the new politically correct term is.


l h from Germany writes: If that administrator discriminated against your child on the basis of his disability, I'd look into lodging a complaint with the local human rights tribunal and board of education.