I once saw Ian Brown speak at a pediatric health conference in Halifax. He walked through his son Walker’s MRI appointment at a children’s hospital. I admired how he clearly explained the absurdities of the hospital process and staff, including the last minute appointment rescheduling and the excruciating waiting room experience.
Ian Brown didn’t muzzle his words in fear of alienating the audience of health administrators, as I had done so many times in the past. I was awed by his fearlessness and utter confidence – a contrast to me with my carefully crafted and inoffensive speaking notes. I realized then that I was being so inoffensive that I often ended up saying nothing at all.
A couple of years later, I was asked to speak at a health professional conference in Banff. I suddenly became obsessed with telling the truth. I was a last minute substitution, the only ‘patient’ on a panel. I showed up not representing anybody other than myself. I don’t know why, but I made the decision to throw caution to the wind at this tony hotel built into a mountain, with its audience of well-dressed leaders and administrators.
Before I got up to speak, I remember sitting at a front table, my heart beating loudly in my throat, shaking with anxiety. I finally took my place behind the podium, quaking in my sensible heels, took a deep breath, and scanned the serious crowd. I decided to go for it. I asked the audience to stop calling me ‘Mom’ and my son ‘Buddy.’ I suggested that all clinicians should make eye contact unless they are gynecologists or urologists. I asked them to stop barging into patient rooms without introducing themselves, and stop taking away patients’ clothes and stripping us of all our dignity. I advised to stop calling my son a ‘Down’s boy’ when he was in fact a boy who happened to have Down syndrome, and to quit using the terms ‘burden’ or ‘suffering’ when you talk about my child. I noted that patients and families are well-aware that the health system isn’t perfect, because we sit in Emergency Department waiting rooms or beside our children’s inpatient beds for hours at a time and observe the staff very very closely.
Later, on the panel, I became enraged by the blatant professional infighting between clinicians (Specialist v. Family Physicians, Family Physicians v. Nurse Practioners, Nurse Practioners v. RNs, RNs v. LPNs, etc), and pleaded with them to play nicely in the sandbox for the sake of patient safety and care. I don’t think the moderator cared for me, but for once in my life, I didn’t give a hoot.
I borrowed my gumption from Ian Brown. For the first time, I focused more on the messages that I was sharing rather than obsessing if the audience liked me or not. After my talk, I had a line-up of folks wanting to speak to me. I have had many subsequent speaking opportunities and relationships that grew out of that one presentation in Banff. Great presentations use passion, humour and emotion. It was the first time I had presented in a totally authentic way. I didn’t read from an organization’s speaking notes, or talk generically about the patient centred care philosophy. That presentation could have bombed, and it did take a few slides for that tough audience to warm up to me. While I used humour and storytelling to soften my messages, I basically just got up and was myself – Sue Robins: writer & mama bear.
I’ve since figured out that health audiences want to hear the truth about the patient experience. (Preferably from patients themselves, but that’s another blogpost).
I’ve followed Ian Brown carefully since then. Like many others in the disability community, I devoured his book The Boy in the Moon, and read his essays about Walker in the Globe and Mail. I’ve watched his Holland Bloorview Kids Rehab Hospital talk and read his essay published on Bloom, called The Absence of Normal Frees Us.
Last week, a friend alerted me to Ian Brown’s latest essay in the Walrus Magazine, called ‘Facing Difference: Down syndrome in the age of prenatal testing.’ Now, my youngest son has Down syndrome, so I’m naturally predisposed to this topic. I’ve spoken in the media about prenatal testing before, and I stumble about, trying to articulate my thoughts on a heated subject. In about 600 words, Ian Brown, with his talent and insight, expresses what I’ve been trying to say for years. What do I think about prenatal testing? Here’s the answer:
The answer is that the fragile and flawed among us may be crucial, as Charles Darwin thought, to our ethical survival as a species, to make us more subtle, more watchful, more compassionate and less judgmental. That is a revolutionary idea, but then disability is inherently radical, lived in defiance of the so-called ordinary. – Ian Brown, The Walrus, page 42, May 2014.
Beautiful. Eloquent. And true. What would happen if we all borrowed from Ian Brown and found opportunities to tell our truths? I think we’d slowly start to come out of the shadows, and stop being Invisible Moms. For change is never going to come from our continued silence.