Yes, Virginia we were wrong, wrong, wrong - but let’s make it right.
Photo by Rick Guidotti for Positive Exposure.
This morning my computer reminded me that my editorial for the April issue of Helen was advanced to the top of my pending deliverables.
In total disclosure it wasn’t some computer alert reminder program but a yellow sticky affixed to my screen. I am however boasting of my technology evolution as it wasn’t too long ago that my reminders and cues were derived from an index card taped to my desk lamp. So I resent the reference to my being a hopeless Luddite. On second thought, the 1927 Model T Ford in my garage reveals the opposite.
I’ve been writing editorials regularly for the past twenty-five years and I never really thought about the history of editorials. Turns out that Horace Greeley invented the idea of segregating news reports from opinion when he founded the New York Tribune in 1841. He called it the “Editorial Page” and it gave newspapers the ability to endorse and support their views and opinions relating to ongoing politics and the machinery behind them.
Years ago the prestigious Smithsonian Magazine listed the ten most “Unforgettable Editorials” ever published and two of them inspired me to get down to this installment of my Helen editorial.
Virginia O'Hanlon's original letter
The top most significant editorial was titled “Yes, Virginia, there is a Santa Claus.” In 1897, 8-year-old Virginia O’Hanlon wrote The Sun of New York editor, Francis P. Church, asking, “Is there a Santa Claus?” Much to her surprise, Church responded to her in a published editorial, “Yes, Virginia, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy.” It reverberated across the nation. It has been cited as the most reprinted newspaper editorial in the English language. And it has been translated into around 20 languages and adapted as a film, television presentations, a musical, and a cantata.
Number 7 on the list also struck home. It’s an editorial by Charles Overby, editor of the Jackson Clarion-Ledger, an old Mississippi newspaper that opposed the civil rights movement and made no excuses for its racist sentiments. Despite the appointment of Overby as the new editor, the Clarion-Ledger was the same segregationist newspaper to its readers. In September 1982, to mark the 20th anniversary of James Meredith’s integration of the University of Mississippi, it printed an editorial that began, “We were wrong, wrong, wrong.” It reflected the consciousness that had taken place in the South.
I thought it was fitting to combine these two unforgettable editorials. But instead of simply highlighting the historical mistakes the medical community has made time after time, I want to share the lessons we’ve collectively learned about people with disabilities.
Yes Virginia, we clinicians were wrong, wrong, wrong when it came to people with disabilities. But what have we learned?
Here’s my top 20 list of Inclusive Health Lessons Learned:
Train healthcare professionals to prioritize dignity and respect when treating patients with disabilities.
Use individual behavior support plans, instead of unethical alternatives.
Train and promote direct support professionals as essential healthcare workers.
See our neurodiverse patients as people first, as we do with our neurotypical patients.
Include patients with ID/DD in clinical trials and eligible for organ transplants.
Empower people with ID/DD to earn a level of income that won’t terminate their existing support programs.
Continue oral healthcare when they become adults.
Empower all patients to make decisions that would impact their quality of life.
Enforce the Americans with Disabilities Act and correct and punish all infractions.
Provide technology to assist people with ID/DD.
Appreciate that all behaviors are communication and understand how to translate them for a positive outcome.
Allow people with ID/DD to explore their innate and natural desires and curiosity in expressing their sexuality.
Include people with ID/DD in policies and procedures for action interventions during natural disasters, pandemics, or civil emergencies.
Recognize people with ID/DD as a medically underserved population (by the US Dept of Health and Human Services.)
Integrate the best aspects of the social model and medical model into one model that offers the best outcomes for the whole person.
Prepare for the extended level of the supports inherent in elder care.
Avoid terms and labels that describe patients as lesser.
Use person- or condition-first language depending on our patient’s preference.
Create collaborative and comprehensive transition care plans.
Address unconscious bias in the support community, from clinicians and DSPs to educators and administrators.
I know this isn’t a complete list of lessons learned, and I invite you to send me yours.
One comes to mind just as I’m finishing this article. Recently, the Accreditation Council for Graduate Medical Education (ACGME) rescinded the requirement that all pediatric residency training programs have a developmental and behavioral pediatrician on their faculty. This is a wrong happening now — and it will be a lesson learned. We must continue to advocate with people with disabilities and identify wrongs in realtime.
We should ensure the next generation of pediatricians is equipped to manage, treat, and plan for the complex healthcare needs of children with life-long developmental disabilities.
Yes Virginia, we were wrong, wrong, wrong and it’s time to right, right, right those wrongs.
