How stories humanize us

Historically BLOOM has been the voice of parents raising children with disabilities.

But there’s value—to parents and professionals—when clinicians share stories about the emotional side of their work in children’s rehab.

My “aha” moment came when listening to an occupational therapist describe how anxiety-provoking it was for her to tell parents that their child needed to be referred for a wheelchair. Often, the parents still held tight to the hope that their child would walk.

The therapist spoke about how she had to fight putting off these conversations, and how she wished there was something she could do or say to lessen the emotional pain she knew the parents would experience. She had to approach these talks with a great deal of humility, knowing that she didn't have the "magic bullet" the parent sought.

While listening to this therapist, I suddenly saw myself on the other side of the fence as the parent receiving the news that my child would never do something—in our case, speak.

And knew how I hadn’t been able to hear the therapist, how I had shut down inside. On the outside I’d be saying “Yes, I understand,” but on the inside I was dismissing this therapist, scratching her off our trusted “team,” and probably even plotting our next speech intervention. I never thought about how it felt to be the professional in these conversations. If asked, I would have said: “I don’t care how the professional feels, because this isn’t about the professional, it’s about my son.”  

But listening to this therapist, I felt tremendous empathy for her.

I could see that we experienced some of the same emotions and I saw this as a bridge to our experience.

I also felt a knot of guilt in my chest: ‘I wouldn’t want her to have to deal with a “bull-dog” parent like me,’ I thought, and this revelation surprised me.

We talk a lot in family-centred care about partnership between parents and health professionals. But I hadn’t been a “partner” in planning my son’s care when I held rigidly to one speech outcome for my son, dismissing any contrary evidence I was presented with.

Hearing a professional speak about the emotional side of her work brought home the human impact of children’s rehab on professionals and made me care about it.

If we’re going to humanize health-care, it’s not just our children who have to be seen as full human beings. It’s the people who work with our children, too.

Stories can level the playing field between parents and clinicians.

Instead of positioning the professional as the all-knowing, invulnerable partner in the clinical relationship, and the parent as the helpless, needy one, desperate for answers, candid stories reveal the strengths and limits of us both. They reveal our common humanity.

One of our goals at BLOOM is to bring you more stories from clinicians, researchers and students.

Using the search button on the right, check out How one boy’s life changed mine; 5 things I wish parents knew and Let’s rethink ‘normal’ in children’s rehab.

Happy weekend!