Departing from negative narratives on parents of children with special needs
As part of their passage into the special needs world, many parents have read “Welcome to Holland” by Emily Perl Kingsley.
The essay describes the excitement of boarding your flight for a long-anticipated vacation to Italy. However, the world changes drastically when your plane unexpectedly lands in Holland:
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.”
The metaphor is that the trip to Italy is a typical birth and child-raising experience, and that the trip to Holland is the disruption, the “other place” type of experience of having and raising a child with special needs.
“But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
“And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.”
“But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
There are many supporters of Kingsley’s essay.
And of course, there are tons of critical opinions, too.
At Vest, we strive to be neutral, recognizing that each one of us is entitled to our opinion, and that the harmonious sharing of diverse opinions is how problems are ultimatley resolved. As long as no harm is being done, our personal beliefs and where we find solace are fundamental rights that direct our individual paths on life’s journey.
At Vest, we're on a mission to disrupt negative narratives on parenting a child with disabilities.
So we must question whether “Welcome to Holland” still holds up as a model for how medical professionals, legal experts, and our society should view parents of children with disabilities. We think not so much.
Primarily because of Kingsley’s basic tenet that having a child with special needs is a loss to mourn:
“...And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.”
At Vest, we respectfully disagree.
We don’t believe that having a child with disabilities is a significant loss that necessarily inflicts a lifetime of pain. We don’t believe that you, the parent of a child with disabilities, have arrived in that “other place” where disability families must go (and not Italy, where neurotypical families go).
I am not questioning the good intentions and soul-nourishing empathy offered by Ms. Kingsley in welcoming parents to Holland. I understand that her heart was in the right place and society's attitudes about disability were in a different place when she wrote her essay. This post is not a criticism of Ms. Kingsley. Rather, we're just taking a short trip back to Holland to see if anything has changed since 1987.
Today, we can see just how significant this pereception of "loss of that dream" impacts every aspect of a special needs parent's life. Talk to any parent of a child with disabilities, and you will hear essentially the same story, filtered through each individual family's experience.
Parents feel that they have been forced into a "pigeonhole" where they are viewed by society as "the other" family, with everyone assuming that their lives are necessarily characterized by never-ending struggles to overcome seemingly insurmountable obstacles.
That's a pretty bleak percpetion, and one that is not justified by the actual life experience of the thousands of parents I have come to know in my estate planning practice.
But why is this so, why does society have such a bleak perception? Where do all of the negative narratives on parenting a child with disabilities come from?
For a deep dive into the "medicalization" of disability, and the reasons why our culture is permeated by negative narratives on parenting a child with special needs, every parent of a child with special needs should read this seminal study: "Historical perspectives on studying families of children with disabilities: A case study for critical research."
In most cultural narratives about the experience of of parenting a child with a disability, notions of profound loss and burden emerge as central themes, and these are upheld in in institutional discourses and practices. (Lalvani & Polvere, Disability Studys Quarterly, July 2013)
And therein lies the damaging misperception. Our cultural narratives - from medical literature, to lawyers, to charitable institutions, to schools, to governmental agencies and support programs - all tend to treat having a child with a disability as a lifetime of burden and struggle, and somehow a deviance from the norm of the neuro-typical family experience. In other words, it's Holland, not Italy.
Of course, parents of children with disabilities are dealing with struggles and stress and emotional barriers that are impossible to fathom by us "neurotypical" parents. Nobody doubts that having a child with disabilities profoundly impacts the course of life for parents and other family members.
However, having worked with thousands of families over the past 25 years as a special needs trust attorney, I have always been impressed by and in awe of the vast majority of parents and families I've met who have not allowed the disability establisment's negative narratives to define their lives.
The parents I have come to know over the years don't at all believe that they are "out of the norm" or living a life of "profound loss" facing insurmountable problems. These parents navigate life with their child who has special needs just as any other family navigates life. Disneyland, New York, Spain, Italy, Holland, or camping in the backyard, evrything's still wide-open for inclusion on the itinerary. It's just all done differently to accomodate their child's complex care needs. And they enjoy happiness and contentment, too, in that carved-out quiet time that they are adept at creating.
But nearly all the parents I have worked with express frustration, and resentement, of being viewed as "the other" as they raise their family and navigate life. They believe, and I do also, that many of the barriers and hardships they face are constructed on society's faulty assumptions that having a child with disabilities is a tragic hardship, and that as a result, their lives are deficit in joy, happiness, and contentment.
We believe that you and your child with disabilities and your family are in precisely the right place. We understand that you are not "deficit" in any other areas of life enjoyed by other families. We understand that there are unique difficulties and extreme pressures and limiting choices facing parents and families of children with disabilities.
And that's why we created Vest - to help make life a little easier for you along the way.
At Vest, we say that everyone can go to Italy; and while each one’s experience there may be different, that is exactly what makes it grand!