By: Nicole Jorwic, Director of Rights Policy, The Arc of the United States, and oldest of four.
There is a saying that goes, “the two greatest gifts that a parent can give a child are roots and wings.” These are gifts that I have been lucky enough to receive, along with my siblings, including my brother Chris who has autism. My brother Chris is nonverbal, and it wasn’t until he was in his late teens that we appreciated his true intellectual capacity. Before that he was “locked away,” his words, “by autism.” My parents, even before we knew Chris’ true level of intelligence, presumed his competence and pushed his teachers, therapists and service providers to think beyond his disability. It is with that perspective that I read the recent New York Times Magazine Article “Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?”
The article highlights the incidents of parents of children with severe physical and cognitive disabilities unnaturally stunting the growth of their children, in order to make it easier to care for them at home throughout their lifetime. This decision, I can imagine, is not come to without a great deal of deliberation and trepidation. However, it should not be the parent’s choice to make. The Arc’s Health Position Statement is clear:
“Treatments for persons with IDD that are proposed primarily for the convenience of the caregiver (such as medical procedures that interfere with typical growth and development) must be denied.”
The decision making process, outlined in this piece, is based on the needs and desires of the caregivers, and completely removes the voice and rights of that child with a disability.
The parents are also making the decision based on information that they have received from doctors about their child’s developmental age and potential. This is science that is imperfect at best. As noted in the article, there is “a significant body of research shows that the intellects of people with severe motor impairments can be grossly underestimated.”
With this incomplete information decisions are made, despite the reality that many individuals, including my brother’s, intellectual capacities are not known or can evolve over their lifetimes, especially when they find a means to communicate. This is proven true with the child who is featured in the story. Ricky has “shown signs of purposeful movement, an important developmental milestone, by using a head-motion-activated assistive-communication device to stop and start videos at his school for the visually impaired.” This development is, I am sure, treasured by the family, but it also shows that Ricky’s right to self determination was eliminated by the decision to stunt his growth. As is clearly stated in The Arc’s Rights Position Statement regarding self determination:
“People with intellectual and/or developmental disabilities have the same right to self-determination as all people. They must have opportunities and experiences that enable them to exert control in their lives and to advocate on their own behalf.”
The ability to assert control in their lives was violated by the decision to stunt their growth, and the rights of these children were breached. There is a dignity of risk for all of us, including individuals with intellectual and/or developmental disabilities. That includes the right to grow, make mistakes, and to thrive. Perhaps what these families should be advocating for is not the ability to stop their child’s growth, but, what should be advocated for is better technology to help the children communicate their wants and needs, as well as technology and better supports that will make it easier for their children, as they grow into adults, to stay at home. That growth will come from roots, planted in the belief that every person has a right to reach their full physical stature and their full potential. All of us grow in ways we couldn’t have imagined as children, and all people with disabilities must be afforded the right to achieve those “unimaginable” heights.