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.
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January 15, 2008 at 11:55 am
Lincoln Cannon
“We have the technology if we have the will to build that society now.”
I agree, and our technological abilities in this area are expanding more rapidly than most of us realize.
January 15, 2008 at 12:54 pm
Doc
Certainly,
The question becomes what do we do with it. Take Botox for example, do we use it to prevent wrinkles or is it better use in patients with painful uncontrolled muscle spasms or twisting. Our society is spending much more on the former, IMO the latter is much more valuable.
January 15, 2008 at 2:13 pm
Dale
Thank you for the link to my article, and I’m thrilled that it was helpful to you.
Cheers,
-d-
January 30, 2008 at 4:02 pm
Last Lemming
Sorry I am coming to this thread late. I just followed your link from Nate Oman’s thread on T&S.
This is an outstanding post. If somebody hosts the Niblet awards this year, I will nominate you.
You mention the speculation about the premortal existence. Nate summarized it as follows: “First, a severely mentally retarded child has her retardation because in the premortal world she was an exceptionally valiant spirit and her current disability means that all that was necessary was for her to receive a body and then go straight on to eternal exaltation, worlds without number.”
The speculation about premortal valiance is problematic enough, but even more dangerous is the assertion that this child will go straight to eternal exaltation. The doctrine of the church is that they will be saved in the celestial kingdom, not that they will be exalted. This simply means that they will not have to suffer for their sins because they were not accountable for them. But D&C 130:18-19 still applies. If they obtain knowledge and intelligence in this life, they will have so much the advantage in the world to come. And they will need that advantage just as much as the rest of us. Thank you for reminding us of that.
January 30, 2008 at 4:23 pm
Ray
Thanks, Doc. This says very well what I am trying to say on T&S.
January 30, 2008 at 9:10 pm
Doc
LL, Ray
Thanks for the kind words. I get passionate about this because I feel its one of the few areas I might have some experience and wisdom to pass on. I feel for parents that face the challenge of understanding why a child is born with difficulties, and I see how our folklore may be somewhat comforting, but it feels as though everyone thinks the child’s already written off in this life. If that’s the case, why are they here? I think its the same reason we all are. We are the Children of God and accepted with joy this opportunity to grow and advance. I think it increases the divinity both within them and within us when we can look past the “horrible” fact of their existence and see we are all divine and tragically imperfect at the same time.
February 4, 2008 at 4:02 pm
EEJ
I’m not religious myself, but certainly enjoy learning about different perspectives, religious in nature or not.
I have a hard time understanding the “premortal” explanation for why someone would be born with disabilities (diff-abilities?).
If they were “exceptionally valiant spirits”, why punish them with lesser abilities? If these “spirits” (people) were so valiant in a “past life”, shouldn’t they be given the “best” bodies to use during this life-cycle, to be more able to better the rest of us, and show us what they learned in their past cycle?
I think I may have too many unspoken questions in the statements above to be answered concisely, but I appreciate your writings as they have given me definite food for thought.
February 4, 2008 at 4:17 pm
Doc
EEJ,
No problem, thanks for the question. In Mormon theology, we all lived with God as spirits before birth. We agreed to a plan in which we would come to earth, gain a physical body and be tested. We learn that this was necessary for our growth and development. We needed to experience mortality in order to learn to master passions and progress, gain greater agency and self mastery. We recieve a mortal body on earth. In the ressurection, we will all recieve a glorified, perfected immortal body. The point of mortality is a space for growth and experience in a fallen world.
This helps give us some perspective as to why many trials may occur in mortality. The thinking behind the explanation in disability is that perhaps some spirits were so advanced they did not need the full mortal experience to be ready to return to live with God. I reject the idea that life with a disability need be less than a full mortal experience. I think there are certainly some unique things that can be learned in overcoming disabilities and I feel we are all here to learn as much as we can. We all have weakness to work on. Anyway, hope this helps.
February 11, 2008 at 9:53 am
Emma
As a life long wheelchair user due to Cerebral Palsy, I find I must take offense at a lot of the above post. I particularly find the use of the term “neurodevastated” to be insulting and degrading. Have you ever spent much time actually getting to know who your patients are outside of their specific diagnosis? I find some of your comments have merit such as those relating to not lowering expectations but would be interested to know if you are aware that a lot of people with disabilities see themselves completely differently to how you seem to see them?
February 11, 2008 at 10:35 am
Doc
Emma,
My deepest apologies, I sincerely meant no offense. In fact, you are exactly the sort of patient I am talking about when I say we often overestimate the extent of disability in others. I can assure I am not referring to someone who is just wheelchair bound by neurodevastated. I should have been clearer. There are extreme cases in child neurology where the brain never develops beyond infantile state.
Of course the problem with this categorization is that we may not really know when this is. It may be that, like the person in the U2 song, waiting for an opportunity to communicate that those we assume are “devastated” are much more conscious and understanding than our prejudice realizes. I could be wrong about how devastated the children were in this example, but I want you to know I don’t hold to the pessimistic observation of this Neurosurgeon. There is great worth and importance in overcoming prejudice toward the disabled and seeing them simply as one of us, fully human.
PS
I would I add I am completely aware a lot of people with disability see themselves differently than I do. I am trying to see the world through their eyes. I must add, this doctor sees himself completely differently than you seem to see him ;), meaning I think we are much more on the same side of this issue than you realize.
February 11, 2008 at 7:48 pm
Steve
Doc,
Have you ever read “Life is a Blessing, A Biography of Jerome LeJeune”. I think you might really enjoy it; maybe even be inspired by it.
February 11, 2008 at 9:55 pm
Doc
Steve,
Thanks, I checked it out at Amazon. It looks like my kind of book. I have added it to my wish list.
February 18, 2008 at 11:53 pm
disillusioned
WOW!!! I have been searching for your website for years! I linked mine.
I am a professional who have worked with children and adults with significant disabilities for years (in and out of Utah). I CANNOT tell you how often I have run into such apathy–sometimes even from parents. I CANNOT tell you the frustrations I have experienced when people assume that children and adults with disabilities are just sent here to “coast” until they die! It frustrates me to the end!!! Because, I truly know that I have been shown a completely different vision–mainly from these children and adults.
When I was in high school, I was blessed to be in a class with a young man with intellectual disabilities. I was already well on the path to my profession by then (as well on my way as one can be at 16). One day we had a special testimony meeting. This young man sobbed–and then got up and bore his testimony about how many sins he’d committed. Of course, we all sat there in stunned silence thinking “Dude, you’re in–don’t worry!” But, as I grew up in this mission of mine–I learned that he was right! Of course–the Lord would be merciful with him! But, he was recognizing that in order to meet his infinite potential that he (and we) was sent here to meet, even he would be held accountable to his level of understanding. This is what I emphasize to people. I have worked with children and teenagers who have been “excused” by those who claim to love them from doing anything, learning anything, or reaching for anything. They are not happy children/teenagers–and they are not reaching their potential. Then, I have worked with children/teenagers experiencing the opposite. I see in these children/teenagers/adults the truth! They still are “disabled”–but they meet and see their own potential–and live up to what the Lord would have them do! It seems like a miracle–but truly is the plan of the God!
December 28, 2009 at 4:29 pm
Sharla
Hi. I am a Chiristian who is interested in better understanding the Mormon relgion. I also work with individuals with special needs. I found this website because I was interested in the Mormon stance on disability. I am pleased to find that these special people are not considered cursed or less than other more able people. My personal view of these individuals is that they are better people than most because they have more to overcome to accomplish the things that we consider normal. They tend to have more character, perseverance and merit than people who have to put forth less effort to accomplish daily tasks. They are definitly people that are worth getting to know.