I gave a talk last week at Sick Kids hospital here in Toronto, for their Genetics grand rounds. I enjoyed myself immensely–the audience was highly engaged as listeners and I had enough time to build out some proper discussion points, beyond just telling our narrative.
I am including my slides below. I spent the first 20 minutes sharing our story (notice the familiar photos!) then moved on to share some reflections on the nature of influence in decision-making. There are a couple of points here that really deserve their own essays–will return to this topic later this week and share more fully. Here were the main points:
Disability is treated as disease
- This speaks to the prevailing perspective in childhood disability that one can ‘overcome’ if he or she just perseveres–in most cases of severe disability, this is simply not true.
- Adult disability does not seem to have this same inspirational tone. Rather, many adults with disabilities I have met have integrated their disability as part of their identity and do not see it as a disease to be eradicated or overcome. For some, this idea (of ‘fixing’ their disability) is offensive. But, there is no room in the childhood disability industry for this perspective.
Advisors generally have no lived experience with the condition they are treating
- An observation, not a complaint. Seeing many cases in clinic is not the same as living it. The issue here is that often the only advice a family gets is from people who haven’t lived the journey. I don’t believe this can possibly offer enough perspective. Why doesn’t healthcare support connecting new parents with much older families, or adults who have the same condition as their child?
Medical information is perceived as complete, true and enough
- I suspect that the medical/research literacy of most new parents is fairly low. What is good information? What is valid? Who funded the research upon which this study is based? What bias is the physician bringing to this conversation? What additional studies disproved this idea?
- In my experience, clinicians have been as forthcoming and well-intentioned as they can be–insofar as their own personal maturity and level of self-awareness allow. There is no unbiased truth, but it sure can seem the opposite is true in clinic.
Impressions and memories change over time
- I spent a long time on this one and can’t cover this in a few bullet points. In a nutshell: often, what mattered once doesn’t matter anymore. Or, what didn’t matter then matters now. And, how things look today will look different tomorrow.
- There is a tendency in moments of medically-based decision-making to over-focus on the only thing healthcare can provide: medical information. Looking back on my life with Owen, none of the physical disabilities or required medical treatments are what I think about or remember vividly now.
Correlation does not imply causation
- Social statistics are often mentioned in the prenatal ‘talk’–financial hardship, divorce rates, declining health of the caregivers–presented as a cause and effect relationship to having a child with disabilities
- Divorce rates: shared as though this ought to be a factor in decision-making, or is at least an indication of how difficult life will be. Problem 1: Who’s to say that separated families are not now better off? Perhaps a life of disconnection and misery awaited them if they stayed together. Regardless, clinicians should not be trying to socially-engineer the lives of their patients. Problem 2: Higher divorce rates do not necessarily mean it’s because the relationship ‘can’t handle it’. Another possibility: challenge illuminates weakness and strength, accelerates maturity, fast-tracks inevitability. Divorce is a mature decision, not a random surprise. Seems like an irresponsible leap to threaten divorce (presented as neutral fact) while parents are making neonatal continuation/termination decisions.