What My Parents Did Right: Recommendations for Parents of Children with Blindness
Authors: Patricia Walsh
Keywords: blind, independence, self-determination, athlete, engineer
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Given my topic, “What My Parents Did Right”, you may expect this to be a short read. My opportunities in higher education as well as my opportunities in paratriathlon as a blind competitor have given me new insight into the value of being held to a high standard. As I peer through from the other side, an adult perspective on a child’s upbringing, I now see method in the madness.
Nothing is black and white. We all do the best we can to traverse complex spectrums of behavior, emotion, and capability. I always tell people the absolute hardest thing about being blind is the prejudice of reduced expectations. Professional peers, family, and the general population always expect the least of me. While at Oregon State University I was completing my degree in Electrical Engineering and Computer Science while employed in the Physics department. In the Physics department I led a team of research assistants. I had equal to or greater responsibility than my sighted peers based on my ability to utilize adaptive technology to drive to results. One day I was taking the elevator to the main level. A well-intentioned Samaritan approached me and asked some of those awkward questions persons with disabilities hate to be asked. She first asked, “What happened?” She then asked, “Do you live with your parents?” The finale of her well-intentioned barrage of uncomfortable questions came in what was intended to be a loving affirming encouragement; she said, “I think it is so adorable that they let you work here”.
Put yourself in my shoes at that one moment. I had worked hard to live to my full potential. I have a stacked resume compared to my sighted able bodied peers. I am holding my own, on my own, at a major university. In that moment in time all of my hard work had been reduced to the assumption that my presence was as a token. How hard it was, and has been for me to not become a defensive person! How hard it is to maintain a commitment to being a gentle educator. My experience has been that no matter what you accomplish you cannot outrun the cultural perspective of being lesser than. It is only through cultivation of a sense of capability that you can combat the pressure of reduced expectations.
My only opportunity to interact with others with blindness or disability is as an athlete. As a member of the U.S. national team I run into individuals with blindness that ranges the spectrum. What I find interesting is that there is no apparent connection between degree of vision loss and independence. I know legally blind people who are very dependent, I know totally blind people who are very independent. I know grown adults with blindness who can hardly answer a question on their own as their helicopter parents swoop in to answer for them, giving the rest of the world the impression that their grown son or daughter may instead have a cognitive disability.
Truthfully, more than any of the other disabilities I believe the degree of blindness does not impact the capability. What does seem to impact capability is the sense of identity, the sense of competence, and the opportunities to cultivate skills as a self-advocate.
My parents were, and may still be in extreme denial regarding my disability. There was a pendulum swinging from ignoring the problem, to sometimes exaggerating the problem, to sometimes using the problem for attention; they were all over the map. I remember being screamed at to express my grief. I remember being screamed at to do better in school. I remember being so whole-heartedly confused as to how I should adapt to my vision loss. As a child I resented their lack of help and guidance. I felt hung out to dry. As an adult now that I have been exposed to persons with blindness and low vision that are far more dependent than their disability requires, I have a tremendous gratitude for my resourcefulness. I am a high achiever by any standard. I have a strong sense of self. I see myself as a leader. I would never have had that if I had not had opportunities to develop a toolset to advocate for myself.
I’m writing today not to encourage you to scream at and confuse your children; rather to find a middle ground on the spectrum of helping to a fault versus offering no help at all. Your children with blindness need support. They need you to affirm that they are capable by not treating them like they are infants. Your children should be challenged and trusted to rise to that challenge independently. The best most wonderful tool you can bestow on your children is the gift of good judgment, which can only be learned through opportunity to practice.
I suspect this practice may be hard on both the child and the parent. Your child should be involved in activities. When I speak to students with blindness or disability the advice I always give them is to find something you are good at that you enjoy doing. Do not let the one thing you most glaringly lack become your identity. It is amazing how investment in a sense of capability can overflow to all aspects of life. It is through success in incremental challenges that your child can become a powerhouse of capability, whether your child is blind, has low vision, or is able bodied. Your child’s greatest asset will be in trusting his or her own judgment.
I am fully independent today. I travel the world without guidance or assistance. I truly live a life beyond my wildest dreams. Without sight I still trust my own perception of my surroundings over what others might describe to me. The most dangerous and damning thing you can do to a child with a disability is to over-protect. I know how hard it must be to let go. Give your child the gift of trusting their own judgment by allowing them space to grow; they will need the practice. Trust me; they will thank you for it later.
“Adversity has the effect of eliciting talents which in prosperous circumstances would have lain dormant” – Horace. As a parent it must be so hard to watch your child suffer in any capacity. I have sincere compassion for that. Still, I appeal to all parents to hold your children to a higher standard. Teach them appropriate independence as you would an able-bodied child. If a parent always steps in to make decisions on behalf of their child with disabilities that child may never have opportunity to discover their own talents. Your intent may be to protect, but the result is to stifle. As a child I was resentful of being required to fend for myself. As an adult I’m full to the brim with appreciation for my own sense of capability, sense of self, and ability to traverse complicated situations independently.
My final appeal is to ask all parents to meet in the middle. Push your children to be capable. Teach independence. Help your child to cultivate capabilities, gifts, and talents that may have otherwise lain dormant. The only person who truly knows your child’s limitations is your child. Imposing perceived limitations on your child serves no one. Bring all that love and dedication you feel as parents to help your child grow.
Patricia Walsh is a four time national champion paratriathlete, two time ITU Bronze Medalist, two time PATCO champion, USAT Athlete of the Year 2012, award winning engineer, and author of Blind Ambition: How to Envision Your Limitless Potential and Achieve the Success You Want. She was featured on NPR, Success Magazine, CEO Magazine, and Thought Leaders LLC among others. Please feel free to contact me at: [email protected]