I met the author of this article at a CPS meeting a few years ago, she immediately impressed me with her unique perspective. Paige is a developmental pediatrician who does long-term follow-up of preterms, and is involved in developmental evaluation and intervention of children with other challenges, including Spina Bifida.
Church P. A personal perspective on disability: Between the words. JAMA Pediatrics. 2017.
As you will see if you read the article, Paige has a form of Spina Bifida herself, a Lipomyelomeningocele, with a neurogenic bladder and neurogenic bowel, requiring life-long interventions. She discusses the poor tolerance many medical people have of disability, and such how things are often discussed as black or white, whereas having a profound personal experience of disability has made her much more nuanced.
She recounts being involved in a discussion regarding a “selective reduction” of a twin pregnancy where the twin being considered for “reduction”, i.e. abortion, had a similar lesion to her own.
That is an experience that I can barely understand: how would I react if a family was considering terminating a pregnancy because of a condition that I had? Paige recounts the episode with tact and humanity.
I can imagine, as I have heard them many times, the words of the other physicians involved in such a decision, I am sure they talked about handicaps and limitations, poor quality of life, pain, and restrictions on family life. Most of which is said with good intentions but with no real knowledge of the literature, or of the range of experiences of families living with the challenges.
Just as with similar discussions regarding extreme preterm infants, a list of complications, interventions, disabilities, and long-term problems is often presented, but with no similar list of benefits, achievements, abilities, long-term adaptation, and happiness.
Near the end of her moving piece Paige writes:
Like most things in life, and medicine, disability is sharp, painful, humbling, as well as tremendous, giving, awe-inspiring. It is human. It is not easily distilled to an all or none discussion. Medicine sets the tone for this discussion and, to date, has done a miserable job. More is needed to appreciate the incredible opportunities that disability poses. More education is needed to provide the counselling families deserve: balanced, sensitive, thoughtful, and individualized rather than “objective.”
I sincerely hope that this piece by Paige will be part of a new discussion about these issues.
(Of note, even though the article is behind a paywall, JAMA lets you see the first page of the article before buying, in this case there is only one page, so you can read the whole thing for free!)
Good piece . Agree entirely
We docs have a lot of baggage about disability, not least because we have the fantasy of producing the ‘perfect’ result and anything ” less” is a threat to us
The other part of it is that the training of most of those who do the counselling ( obstetricians and neonatologist ) is such that most of the younger generation have had no experience of provision of care for children and families dealing with disability in the long term
This results in book knowledge’s being reprocessed through our own personal biases, whatever they may be, when counselling families. It is not a good basis on which to begin an exploration of some hard issues.
We need a serious look at our training systems, quite apart from a serious look at ourselves