I was interviewed on CBC Radio One, Ontario Today with Rita Celli today. I don’t listen to radio all that much and wasn’t familiar with the show – but a friend’s referral to the producer of Fresh Air started a chain of connections that led me to Ontario Today. The format is: interview for about 15 minutes, then call-in for the next half hour or so.
I was worried that I wouldn’t have enough interesting things to say, or that I would be misinterpreted, or that a caller would challenge me on something I said and I would stumble on a response. If you tuned in, you would know that none of that happened. A positive experience all round and I would do it again in a heartbeat. You can download the podcast here.
I cringed only once. It was when the host, as a lead-in, characterized my message in a way I was uncomfortable with–reducing my message to ‘everything is fake and hope is snake oil’. I had a chance to explain myself, to say “Well, not quite…” and explain that I thought the healthcare system required us to engage in fake work and cheerful pretend and wishful thinking. But I felt defensive. I thought, “Oh no! Parents are going to think I’m saying that what they’re doing is useless!”
But in the end, it was the callers, parents and therapists alike, who called to say that they also felt that there was too much work, too much pretend, too much hope that leads us down garden paths going nowhere. I think we could have taken calls all afternoon and chatted away for many more hours–there was no shortage of stories.
I was nervous before the show and made some notes, included below. These were the things that I absolutely wanted to say before the call ended. I think I got most of them in. And I think I now have my next few blog posts planned out . . . !
- I am sharing my story for others to take from it what they will.
- I don’t have specific advice about actions. My own learning was about self-discovery, creating intention, uncovering motivations – asking the hard questions of what really matters. The outcomes will be different for every family.
- There are many heart-warming and inspirational stories in the media, online, other memoirs. Overcoming odds, disabilities. Even miracles. No one I know experiences life this way. Ian Brown’s book “Boy in the Moon” is a good example of an alternate voice. I wanted to do the same – add another perspective.
- The system is a well-oiled machine with many moving parts. Parents with disabled children are, by comparison, naïve and inexperienced. It’s easy to adopt the prevailing perspectives. It’s important to maintain agency and intentional choice.
- Efforts to support a child are certainly an expression of love, but they are not a measure of love. Parents don’t have to prove anything. We all understand the depth of love a parent has for a child.
- No one else is better positioned to make decisions on behalf of your child. Take the responsibility seriously, make decisions with intention.
- Be flexible, agile, become a skeptic.
- My message is not about individual therapies or interventions or specific decisions – it’s about what perspective you bring and the way you regard your child. To honour their humanity, meet them where they are.
- Protect childhood.
- We are critical of parents who overschedule or over-parent their children. Why doesn’t this apply to disability as well? We are praised for overworking and it is assumed this is required.
- No wonder parents can be distraught when they learn their child is going to have a disability. Not surprising physicians might counsel a family to consider terminating a pregnancy – it is assumed to be a grueling life full of disappointments. I suggest it doesn’t have to be.
- Imagine being on the receiving end of this amount of effort and work. Imagine being a child with no real awareness that there is something wrong with you, and being taken to appointment after appointment, made to work, perform, take off your clothes, pushed through your tears, assessed, monitored, tracked—then experiencing the angst and tears and worry of your parents. I wonder how that must feel.