Tuesday, April 04, 2017
The danger of assuming universal and singular narrative explanations of disability
In a recent article appearing on the CNN website, author Wayne Drash reviews the concept of 'wrongful birth' in context of Lesli, a person who has developmental disabilities. Drash's profile states that he "specializes in stories off the radar" and that "his passion is to tell narratives about life and the unfolding drama of the world we live in."
It would be more accurate to state that Drash cherry picked one person's perspective and advanced a fiction that serves one ideological perspective.
His initial description of Lesli in his opening sentence tells us everything he believes about her person-hood. He immediately goes to the 'fetal position' trope that promotes his message of Lesli's helplessness and haplessness.
For just a moment the reader is led to believe that there may be another side of the story to be told as he describes Lesli's joy at having her mother hold her hand - but the author quickly reverts to reporting the pain that Lesli's mother experiences, how she has cried more than anyone how she could barely sleep given the severity of her daughter's condition. Then we are provided the quote that the mother does not know if her daughter even knows who she is.
The story of Lesli and her mother is framed in context of proposed legislation in Texas that would reverse the decision that allows 'wrongful birth' lawsuits. Apparently, Lesli's mother won such a suit many years ago based on an argument that the doctor failed to tell her that she had rubella. The mother states that she would have chosen an abortion rather than "watch her daughter suffer pain."
The testimony in this particular case is that the doctor states he did not think that the mother ever had rubella. So, there was no 'choice' to offer her. She won a lawsuit against that doctor for his missed diagnosis. The money remains in a trust fund for the care of Lesli.
The mother advocated strongly for Lesli over the years, pursuing education related to rubella and its impact on pregnancy, and working to improve the special education curriculum in Dallas and Wichita Falls.
That might have been the narrative for the mother to hold - but her narrative instead is that she wishes that she was never born so that her child would have never been born.
That particular narrative is unquestionably hers to have, but Drash's error is in elevating that narrative without telling any other side of the story.
There is little doubt that this is a story where the mother experiences pain and there is little doubt that she has come to the narrative conclusions that she has come to. They are as real as the situation that she experiences. However, that narrative conclusion is not the same narrative conclusion reached by all people. That is a primary error in this story. That is also a reflection of the immoral choice by Drash that cherry picks a single narrative.
What is the alternative narrative?
Lesli's mother might have defined her experiences in terms of selfless love given to a child. Or of how a single person can take on an entire system and improve education for thousands of other children. Or of the quality of life that Lesli experiences, exemplified by the simple act of human connection - of holding hands.
We are not given any of that possible narrative because even though these things happened it is not the expressed narrative of Lesli's mother. Does that mean that the narrative does not exist for others?
All that we are given by the author is that when there is a meaningful interaction with Lesli, she moans. [emphasis mine.]
"Mom and daughter now hold hands. Lesli moans."
"Lesli moans through much of the session..."
Lesli's mother has a right to form whatever narrative she chooses. But there are others. Not everyone defines their lives in the same way. Not everyone looks at their child who has a disability and would have chosen elective abortion to pre-empt their perspective on suffering and pain.
If we accept the narrative of Lesli's mother, where are we left? Would we abort all children who might experience suffering and pain? Would we eliminate that same pain from our lives?
When we advance a single narrative to the exclusion of others we risk misrepresenting the story. It is not true, as Lesli's mother states, that people don't care about her daughter. The article itself reports that Medicare and Medicaid will pay about $200,000.00 for the cost of Lesli's care for the next year. That policy is an expression of a social value. That social value is rather clear that many people are caring.
I don't doubt the pain that Lesli's mother perceives, and I am not judging her perspective. I am just pointing out that it just happens to be a single narrative. And there are others.
Some parents experience the same pain that Lesli's mother experiences but they do not frame their perspectives in the same way. In fact, some parents frame their experiences in the exact opposite way and the idea of aborting their child, even though their is suffering and pain, is unthinkable.
The alternate narrative, one that I have had a lot of experience with, reads differently. The alternate narrative focuses on the love expressed by holding hands. The alternate narrative focuses on the quality that the child can experience, or the meaning that the parent created out of what seemed like a senseless event. The alternate narrative sometimes turns the concept of disability on its head and forces everyone else to examine their values! The alternate narrative does not involve descriptions of fetal positions and moaning. It is best expressed in the words one parent told me that I will never forget:
So though there were tears, there was laughter more.
And though there was pain, there was joy more.
And when things seemed bleakest, go... feed the birds.
And the world will right itself.
That is another narrative that exists in the world. There are undoubtedly even more. It is good for us to be reminded of this fact when we are reporting on "narratives about life and the unfolding drama of the world we live in."