I work up close and personal with disability everyday. When people found I was going into child neurology their first question was often, “why”? I often hear about how it’s too sad or too depressing.
Fellow physicians struggle with the fact that there often isn’t anything we can do to fix severe cerebral palsy or neurodegenerative disease, to name but a few. There is something in our nature that makes us shrink from the deformed and debilitated. We all have that voice in our head that’s instinctively says, “eeww.” Becoming a physician for these patients involves experiencing this feeling, acknowledging it and then moving beyond. Most of us do not do this well.
These children are blaring reminders of our limitations, of failure. Many feel the means used to maintain their health are cruel, wasted resources, unnatural. As a medical student I had occasion to run into a Mother who had adopted 4 or 5 neurodevastated children. The Neurosurgeon referred to her as the patron saint of lost causes. More than once I have heard disgust tinge the voices of other residents in talking about such individuals. “What are you getting out of keeping them?” one resident exasperatedly asked in disgust. I think Bono of U2 fame had the answer which you can read about here. Like this child’s mother, I have come to a point where I can now recognize their humanity.
What is left for these parents if we physicians turn away from them because of discomfort? Who will be left to help bear their burdens, to guide them through the maze of their care. The parents of my patients are some of the most courageous people I have ever met. My patients, like the example above, can find such joy and gratitude in the smallest of gifts.
In Mormon culture there is a lot of folklore attempting to explain why these children exist. What are they getting out of mortality? It is tempting to dip into premortal existence for answers. Maybe they were so much further along they didn’t need a full mortal experience because they were so advanced. Maybe, maybe not. But one thing I am intensely aware of is that they develop and learn just as we all do.
They often have a certain innocence I love, but that doesn’t mean they can’t learn, they can’t make mistakes, they can’t sin, or that they can’t repent. We the “abled” often far overestimate the suffering and limitations of the disabled. I think the danger in this folklore is that it can saccharinize disability, it can stunt the growth of children with chronic disease.
They can end up with “vulnerable child syndrome” remaining forever an infant, never learning their own survival skills or moving beyond infancy and total dependency. As Latter Day Saints, our primary goal for the disabled has to be helping them grow, develop, gain agency and independence. I sincerely believe that for they, like all of us have a divine potential within.
We need to fight the inclination to lower expectations. Until we know, we should ask ourselves, why can’t this individual become a parent, why can’t they date or socialize with the rest of us. Why can’t they take their own medicine, make their own appointments. What can be done to enable them to commute, to shop, to navigate their way through education and vocation. The fact is in all but the most severe cases, they are progressing too, regardless of limitations.
These individuals are often capable of great contributions beyond our wildest expectations when they are allowed to. I look forward with joy to one beautiful day when they, and we, will be resurrected, restored to a perfect frame. Until then we need to encourage their Independence. The Zion Society will be one in which all of our weak, our infirm, will be given the tools they need to become one with us. We have the technology if we have the will to build that society now.