“PRADER-WILLI SYNDROME, it’s rare, about one in 25,000 births in the U.S.,” sighed the fresh-faced resident at Massachusetts General Hospital. It was spring of 1997 and my mother was sitting in a cold office cradling my older brother as the white coat in front of her eyed them both as if they were under a microscope. “Just out of curiosity, did you ever consider aborting?”
William was two weeks old. “I think it’s a little late, doc,” my mom thought to herself. This is a quintessential example of parents — mostly mothers — having discouraging or even harmful conversations with health care providers.
Over two decades later and the health care community is still quite concerned with people with varying abilities. So concerned in fact that doctors’ and nurses’ continue to treat people with disabilities as victims of adverse health outcomes and not as members of a unique, diverse and complex population. Members of this community have waited for equity in health care for decades and they continue to wait. Today, in light of the pandemic caused by the novel coronavirus (COVID-19), it is the perfect opportunity to stop waiting.
Hundreds of industries, jobs, technologies and opportunities have changed and adapted in response to COVID-19. I imagine that this change will be lasting and that the lessons learned from this crisis will be foundational to sectors like health care for the rest of our lives. Telehealth and universal access to physicians has blossomed in just the last few months, and I am not simply referring to people such as myself who are inconvenienced by shuttered offices, but those who require — and have for a while — the accessibility rendered by these new technologies.
COVID-19 has elucidated two issues: it exacerbates the needs of a vulnerable population and it forces us to creatively leverage circumstance into possibility. ABLE NH and the Disability Diagnosis Dialogues (DDD) Task Force are on the vanguard of that possibility.
The mission of DDD is to reframe how the diagnosis of a disability is delivered in a positive and empowering way so that parents might be informed and prepared. The workshops are about discussions, the discussions are about dignity.
The workshops and discussions that DDD facilitates act as reminders that every person’s life is one of value and meaning. Physicians, as the first point of contact for many parents, must be sensitive to how their methods and training affect that message. I am neither interested in nor qualified to tell doctors how to do their jobs, but I am concerned with who is the keeper of information that can be life-changing for families, and how that information is delivered. Our workshops aim to improve the work of health care providers, ease the anxiety of new parents, and augment the communication of knowledge and resources.
This pressing opportunity transcends the call to physicians and advocates; mothers, families, and children must take charge of one of the most critical times of their lives, and refuse the gatekeeping, esoteric,