The challenges of parenting with a disability

My six-year-old son told me last week that some kid at school said, “You have the worst Dad in the world because he is in a wheelchair.”

Almost hysterical, he was taking great gasping breaths as he told me.

My  son, for the first time, was exposed to the preconceptions surrounding disabled people.  And it fractured my heart a little.

In his mind “Dada is stronger than the Hulk”, and he couldn’t understand why someone would say his Dad was anything less than totally awesome.

A kid saying something mean to my son, allowed me to explain how some people, unfortunately, think negatively about the disabled.

“But why Mama, why do people think those things?”

Good question baby.

The kid actually articulated what a lot of adults also seem to think – disabled people are incapable of looking after themselves, let alone their children.

Disabled people not only have their own autonomy and competence, but also, their parenting capability questioned more frequently than able-bodied people.

“Is he okay to look after the kids?” a woman once asked me right in front of my husband – the children’s father!

When managing his daughter’s epic toddler tantrum, an old lady tried to lift her from his arms, assuming she was more proficient at settling a screaming child than a guy in a wheelchair.

Others have asked me “Is that safe?” motioning to my son sitting on Kev’s lap as he wheels along the footpath.

A lap he has sat upon since infancy.

Years ago, my father in law carried Kev in a backpack, down over slippery beach rock, lost his balance, flipped over backwards and landed upon his infant son.  Yet not a soul asked him if that was safe.

Being treated in a patronising manner is part of life for many disabled people, with strangers feeling compelled to push a wheelchair without permission in the belief they are doing a good deed, or spouting condescending comments instead of a simple “How’s it going?” Frequently, people direct questions that should be addressed to Kev over his head to me, such as “Does he need some help?”

Somewhere they seem to have forgotten disabled people are just ordinary people.  

Children learn from watching the actions and hearing the opinions of adults.  It is important that they learn to treat others the way they would like to be treated, not how they feel they should treat people because someone may be watching, or worse, may not be watching.

Having a disabled parent can teach children understanding, compassion and empathy,  about diversity, and that yes, sometimes life is hard.  A parent succeeding despite obstacles demonstrates resilience, teaches strength of character, and gives kids a profound appreciation for a strong and healthy body, which helps foster a realistic body image.

Children with a disabled mum or dad understand that disabled people are just normal people, worthy of respect.  And respect is something seriously lacking in our society today when the President of the United States thinks it’s okay to mock the disabled.

There may be limitations on their abilities, as there are on all parents abilities, but every disabled parent I know would drag themselves across the floor, if required, to get their kid a sandwich, use their teeth to hold a kid’s backpack on their lap as they wheel them to school, and do whatever else is necessary to give everything they can to their children.

Yes my husband is in a wheelchair, but he takes our kids camping, skiing and mountain biking. He teaches them about the natural world, space and astrophysics, buys them milkshakes if they ride their bikes all the way to the BMX track and back, and reads stories with a silly voice at bedtime.

But above all he loves them deeply and is always there for them.

It’s true that he might not do well in the schoolyard “My dad can run faster than your dad” competitions, but providing a lap for resting weary little legs is a pretty special gift.

And that’s something able-bodied parents just can’t do.


Ten Years On

Well, it is our ten year wedding anniversary this year.

In some ways I can’t believe we made it.  There were times we were both convinced that we wouldn’t and had pretty much parted ways in our minds.  Constant health problems can take a toll on a relationship. As can babies, particularly twins.

We’ve had who is more exhausted fights, and I just wish you were healthy and can stay out of hospital for three months fights, I want to live in Australia fights, and I’m tired and everything is your fault fights – I’m sorry about those.

A series of counsellors labelled us with euphemisms which pretty much meant the same thing: I was the monkey and hailstorm to your turtle and rock. We never really learnt how to talk about things without getting angry or defensive, so often we didn’t talk about them, and they just got worse and worse and then awful.

We are learning though and most importantly, we are both really trying.

I remember the way you asked me to marry you, in a parking lot in the foothills of the Rocky Mountains, and I was mad at you.

We’d had a picnic that day and I guess I expected you’d propose.  You didn’t though, because you wanted to ask me while we were skiing together.  Somehow that turned into a fight as always seemed to happen.

As we started to drive back towards Calgary, you did a U-turn and drove to the mountains instead. As I sat on your lap in the cool autumn air, you told me that you were not perfect, I was not perfect, and our life together wouldn’t be perfect, but that you loved me more than everything.

Then you picked up a pebble from the ground and using the ring from your pinky finger gave it to me and asked me to be your wife.

You were right, our life together has not been perfect. But there is no one I love and respect more or would prefer to have in my life than you.

Remember our vows?

I promise to be your lover, companion, friend and ally, your partner in adventure, your consolation in adversity and your accomplice in mischief. I will hold you in my arms when you need to be held. I will listen when you need to talk. I will laugh with you in times of joy and comfort you in times of sadness. I will love you for who you are and I’m proud to become your partner.

I mean them more today.