Learning and teaching the dignity of risk
Being free means being happy. My 21-year-old son Aaron took the SkyTrain after work last night. A young adult taking the SkyTrain might not sound significant to you, but it is a big deal to me as his mother.
This is because Aaron has Down syndrome. My older two children were taking transit in their early teens. For Aaron, a person with a visible disability, an extra risk assessment comes into play: what is the likelihood of something bad happening on transit? If something bad does happen, what would be the impact? And what is the risk of not taking transit at all?
Independence means freedom.
Aaron’s SkyTrain adventures introduced me to the dignity of risk.
Dignity of risk means that everyone has the right to live the life they choose, even if choices involve risk. When I say everyone, this includes people with intellectual disabilities, as these folks also have the right to live the life they choose.
Taking transit involves risk, but there is dignity in that risk. Our family helps Aaron mitigate danger. Google Maps has become his friend, and we practice various public transit routes with him before he goes on his own.
Is there danger everywhere? Friends who have non-disabled kids say they’d never let them take the bus or SkyTrain. This puzzles me. Transit is the only way kids can get out from under their parents’ thumb. Statistically, cars are more treacherous modes of transportation, but the myth of danger on transit remains strong.
What about stranger danger? This is tricky, as Aaron does need to approach a stranger if he needs help. The good grace of others comes into play here. To allow
Aaron the dignity of risk, I have to believe that most people are good, not evil (otherwise he would never leave our home).
No parents allowed, so I can get freedom.
Having freedom extends beyond the bus. Parenting any child is a humbling experience, but being Aaron’s mom has offered me extra lessons in humility.
Are my irrational fears blocking Aaron’s quest for freedom? (Yes.) I have an identity as the mother of a disabled child, but am I keeping Aaron down because protecting him makes me feel relevant? (Also yes.)
Aaron is growing up and it is my job to let him go. My two other children came by their freedom naturally—getting jobs in high school, going to college, moving out, and getting married.
Life does not offer Aaron these automatic opportunities. To enrich his life, my husband and I have to support him to build his own life, but not build it for him.
If I had freedom, I would have a wife and a dog and live in downtown Vancouver. I need a wife because I need love.
None of us are fully independent. The idea that we don’t need each other is a misguided North American concept. Life is interdependent, not independent. Aaron may require an extra leg up, but this is because of the barriers put in place by systems which are hostile towards disabled people.
To have a good life, people require a minimum amount
of money. In BC, Aaron is expected to live on less than $1,500 a month—of which a laughable $500 is for housing. This is a sad joke and a massive barrier for disabled people to avoid living in poverty.
Just treat me nice when I’m on the SkyTrain or bus or whatever. That’s all.
If you see someone alone with Down syndrome on the SkyTrain, there’s probably not a reason to be concerned. Smile and say hello if you want. If there are troubles on transit, it is my fervent hope that you offer to help anybody who looks lost or is being hassled, including my son.
People like Aaron are out living their lives, heading to jobs and meeting friends at the pub. Aaron has the right to take a measured risk and be a part of the world just like you and me.
Aaron Waddingham is an actor, model, disability advocate, and proud member of the Vancouver Canucks Hype Team. Sue Robins is Aaron’s mom and an author, health care activist, and co-owner of Bird Comm, a health communications company.