Published onTrisomy 21 Update
Perception is nine-tenths of reality …
Most have heard the phrase, “possession is nine-tenths of the law,” but have you ever considered that “perception is nine-tenths of reality?” I believe understanding this concept provides a strong foundation for effective advocacy. By definition, perception means “the way you think about or understand someone or something.” If we are able to communicate a balanced and clear description of life with a disability it can have a significant impact on others’ perception.
When we are able to educate others and influence their perception, it has lifelong benefits. Our stories begin at diagnosis, but our experiences are lifelong. First impressions set the tone especially when delivering an unexpected diagnosis. This is an impression we need to reveal not only with words but with action. It is hard to imagine that in spite of all the training and advancements we have made in the community about disability awareness, there are still some parents plagued by the inappropriate delivery of an unanticipated diagnosis. This is an advocacy responsibility carried by many but only recognized by some.
Four months into my pregnancy with my first child, I got the dreaded call from the doctor that the testing he ordered came back showing that my unborn child was at high risk for having Down syndrome. I listened as the doctor described his suspicions and outlined the next steps including genetic counseling, high-level ultrasound, and amniocentesis. I had no questions probably because at that moment I couldn’t even construct a cohesive sentence. I truly had no emotions at all; I just felt numb and scared. Once his words registered, I began to sob. We decided to continue with the doctor’s plan so we could be prepared for the birth of our child. Then we waited.
I will never forget the office visit that followed a few weeks later when I found out that my first child would be born with Down syndrome. So young and so scared of just being a first-time mom, I was not prepared for the gruff, cold voice on the other side of the desk to say to me, “Get real, your baby has Down syndrome!” As if that wasn’t bad enough, that same voice continued with, “You know, there are people who will adopt babies like this or places to put them.” It was extremely disheartening that the physician who would potentially deliver my first child had no respect for my decision to continue my pregnancy and raise my child regardless of any test result.
It is obvious that his perception had biased his ability to deliver an unprejudiced diagnosis, present the facts surrounding that diagnosis, and respect and support whatever decision we made. He had the perception that life with a child with Down syndrome would be daunting. In his opinion, there was no reason to accept that life when there were other options. What he failed to realize was that for our family, this was our baby and he was “perfect” for us.
Many families like mine have had the distinct pleasure of realizing that there is life beyond a disability. Experiences, as well as lack of experience, inevitably shape our perceptions. It is important to remember that people are not produced from cookie cutters. Everyone is a different individual. There is no one-size-fits-all and it is no different for individuals with Down syndrome. However, every individual has the right to maximize his or her potential. We must continue to work to break down the barriers so opportunities will be created from the right perceptions.
Over the years, I have grown to realize that challenging situations — those that may set us back for a moment — are in essence the thread from which we can derive change. Once our emotions subside, our beliefs are molded by these impressions. This is when we are faced with the decision of how we will let these impressions frame our perceptions in a positive or negative tone.
Presenting an unrealistic picture of a life without challenge is not the undertone of a positive message and in the long term will not constructively influence someone’s perception. In addition, it will not highlight the areas in need of improvement. More importantly, learning to share our experiences, even ones perceived as negative, in a constructive fashion will build collaboration so we can educate others and effect change.
There are many ways you can use your story to impact others. It is important to identify your strength and comfort level and build on it. If networking with other parents comes naturally to you, consider being a parent-to-parent support person. If legislation is your passion, reach out to local legislators by phone, write letters or meet face to face. Be candid with them about the challenges you have had and the solutions you envision. If you just want to explore various advocacy issues, consider joining your state’s council on developmental disabilities, local and statewide parent group, or the National Down Syndrome Society’s Ambassador Program.
Advocacy tip: Always remember it is destructive to only complain about the problems, but it is constructive to be part of the solution.
Submit your advocacy questions to Trisomy21@email.chop.edu.
This column is not intended to take the place of a formal legal or medical consult.