It happens everyday. Healthcare professionals give new diagnoses and prognoses to caregivers whose children have rare syndromes. I have to believe that healthcare professionals want to do what’s best for their clients, but the truth is that there are so many problematic things we do and say that are damaging. Damaging to patients and to families. Proverbs 18:21 says, “Death and life are in the power of the tongue…” No one wants false hope, but we also don’t want predictions based on pessimistic and oppressive beliefs about disabilities.
The reasons behind why healthcare professionals give these types of predictions are deep and invasive, and reach all the way back to childhood. Children with disabilities were and are segregated from fully interacting with children who do not have disabilities. This extends all the way through health science education where we learn diseases and disabilities through a veil of pessimism. What people can’t do. How many years shorter their life will be. Difficulties. Need. Illness.
“Very few professionals know people with disabilities as peers,” says Asch, who teaches at Wellesley College in Wellesley, Mass. “Their only contact with people with disabilities is in a crisis situation, where the professional is [called on for help]. So the notion among some professionals is that people with disabilities always need help and can never give help or nurturance to another human being or provide a child with security or protection.”
“Never Believe Predictions that Don’t Empower You” (Stephenson, 2014).
How can we empower caregivers and children who receive “bad reports”? What can we do to limit damage done by well-meaning professionals? In a study on parenting in the NICU, the use of Kangaroo Mother Care (KMC) caused caregivers to see their children as being “normal” as opposed to “sick” or “disabled” (Tessier et al., 1998). If babywearing is an extension of KMC, it could potentially empower caregivers and children both to see themselves as competent, valuable, and capable as opposed to ill and in need of care (Reynolds-Miller, 2016). To healthcare professionals: Do you need to give a less than positive prognoses to a family? Include wearing in your patient education. Tell them about the things that they will be able to do with their child. Talk about the child’s ability to connect emotionally in the absence of speech or typical neurological development. Give them options for seeing their child’s strengths. Empower them to say no to treatments or therapies that are not beneficial. Most caregivers want to do what is best for their children. It is apparent when they do not. Give families the ability to choose empowerment. Let them foster optimism. Let them see their child through love and not loss.
We need to stop seeing the diagnoses and start seeing people and their relationships.