Commentary By:
Angela Uncles – Angela is a mother to two girls, Hazel (9) and Lumina (7) from Surrey BC. Lumina was diagnosed in utero with Walker Warburg Syndrome, a rare muscular dystrophy considered life limiting. Angela is a Clinical Counsellor, Non-profit Director at BC Complex Kids Society and Chair of the Family Advisory Council at Canuck Place Children’s Hospice.
Feature Article
Freitag, V. L., Motta, M. da G. C., Milbrath, V. M., Bazzan, J. S., Debatin, G., & Gabatz, R. I. B. (2022). “He is normal”: Phenomenological considerations of child/adolescent’s perception of the disabled sibling. Revista Gaúcha de Enfermagem, 43.
Commentary
When my daughter Lumina was diagnosed with a terminal illness in utero, one of our main concerns was the impact that having a sibling with such a condition would have on our elder daughter Hazel. In fact, the geneticist that we worked with at the time approached this potential impact quite negatively, stating that our daughter would feel abandoned and traumatized if we were to proceed with our pregnancy. This perspective was very damaging to me at a fragile time, and I had always wondered if it was grounded in any academic evidence. When the opportunity came to join the Siden Journal Club and the topic was on siblings, I was immediately interested in participating and investigating the worry that has haunted me.
Many of the ideas presented in the paper by Freitag, V.L. et al are philosophical in nature. This highlighted to me the importance of perspective. From my study of psychology, I have learned how we think impacts the way that we feel and behave. The idea presented by the children in the paper, that they considered their sibling to be normal, will lend itself to positive feelings and behaviours, like being more inclusive and expecting their sibling to participate in society normally like anyone else. Moving from philosophy to reality, there is a block in the way that prevents children with disabilities to participate, namely an ableist design philosophy that forgets that disability is normal. My daughter can go for a walk easily in her wheelchair, but not if there is not a sidewalk. She can play at the playground, but only if the playground is designed with children of all abilities in mind. With a universal design mind, my daughter can live quite a normal life. Without it, she will be resigned to the sidelines, watching her sister. I can recall early on when we would drive by playgrounds, and Hazel would comment that there was nothing for her sister to do there. Having a sibling with a disability primes a child to have a keen eye on the accessibility of the world around them, a perspective that they can carry forward with them in life and hopefully impact systemic changes.
One of the ways that we have ensured that our daughter can live a normal life is by seeking out programming and even social networks that are inclusive in nature. By, for example, participating in events with our local hospice, we can be with other similar family constellations in community, normalizing our experience of living with medical complexity and having fun and meaningful experiences. I would love to see future articles that focus more on what helps children to feel that their life with a disabled sibling is indeed normal. Yes there is the philosophy of normal and as the journal so aptly stated ‘being healthy and normal are not equivalent in their totality on the premise that the pathological can be a type of normal’, but I am still curious about what more can be done to provide equitable opportunities for children with medically complexity and move normal from philosophy to the everyday, tangible, toes in the sand life experiences our families long for.
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