Article by Stephanie Geraghty, 2012 Marine Corps Spouse of the Year
Have you ever wondered why the little boy in the grocery store is zipping around in a wheelchair? Why the girl sitting next to you in the movies is rocking back and forth? Or why the boy in your son’s karate class does not speak?
I do. Curiosity is human nature. But along with curiosity comes questions: Do you ask? Do you not ask? What do you tell your children when they ask you?
According to the U.S. Census Bureau, approximately 56.7 million people living in the United States had some kind of disability in 2010, accounting for 18.7 percent of the entire population. The National Military Family Association currently estimates that more than 100,000 military families include members with special needs.
My point: there’s A LOT of us. My family included.
My son Cole has a genetic motor neuron disease called Spinal Muscular Atrophy (SMA). Missing genes in his DNA ultimately result in muscle weakness and atrophy, especially in his legs. Cole possesses the ability to move through crawling and cruising. He uses leg braces, a gait trainer and a power wheelchair to travel greater distances. In addition to using these resources, our family does whatever we can to meet Cole’s needs.
One day last summer, I took Cole to a local pool for some physical therapy. I brief ly explained to the staff that Cole had SMA and I was interested in doing aquatic therapy with him. A young lifeguard eagerly jumped to help accommodate us. As we set up the equipment, he voiced interest in Cole’s disorder by simply asking, “What are his special needs?”
He admitted he had never heard of that disease and asked thoughtful questions without hesitation or embarrassment. I was pleasantly surprised by his honesty and was happy to respond. I described the disease and explained that physical therapy is the best and only therapy, hence our interest in aquatic exercise.
For me, that straightforward question of “What are his needs?” was an easy way to open the discussion. He made eye contact with me and asked it with genuine kindness. Another thing I loved about the dialogue: How he addressed Cole personally. He wasn’t scared to talk to Cole.
MAKING A CONNECTION
The lifeguard’s questions also gave me a chance to brag about my sweet boy. It opened the door for me to talk about how he loves to wrestle with his dad and his brother, builds creative projects with his Legos, and gets into mischief just like any other 3-year-old.
I talked about his profound ability to problem-solve and how he does not allow his disability to define him. I talked about how proud we are. The lifeguard was so inspired and impressed with Cole, he asked if he could run his upcoming half marathon in Cole’s honor. My heart soared.
What a wonderful gesture by a stranger. This honest open exchange was so easy yet so rare. Why does our society shy away from embracing and understanding differences? Every person wants to be loved and included. Awareness proves vital to the acceptance of all disabilities, and for some, it is the only way to find a cure.
That day I vowed to use my experiences to help raise awareness and foster open and honest communication about disability. I’m still learning myself, so I spent time reading and gathering responses from friends and family to explore all angles. My efforts resulted in two main conclusions:
PEOPLE ARE AFRAID TO ASK QUESTIONS.
People don’t ask questions about the differences or disabilities because they do not want to say the wrong thing or cause feelings of discomfort, hurt, or awkwardness. They don’t know what to say, so they refrain from saying anything at all.
MOST FAMILIES ARE HAPPY AND WILLING TO RESPOND TO OPEN AND HONEST QUESTIONS. They welcome dialogue as a means to increase acceptance and awareness.
So, how do we bridge the gap? If you’ve just arrived at a new duty station, or you’re making plans for your next move, what can you do to make sure you’ll connect with other parents who happen to have a child with special needs?
We can aim to build confidence in discussing disabilities and fostering new relationships. My hope is that the following ideas will help you feel more confident to initiate discussion and engage in positive interactions.
FIRST, WE CAN TEACH TOLERANCE AND INCLUSION AT A YOUNG AGE
TALK TO YOUR CHILDREN
Talk to them about disabilities, their own or those of others, and alleviate any fears they may have about what they may not understand. We encourage our 5-year-old son Caden to be his brother’s best friend, helper, and advocate.
LET THEM ASK QUESTIONS
I recently realized we had not discussed his interactions with other children who possess a disability. So, we discussed how God makes all of us unique and that those differences are what makes us special. We talked about despite how someone looks or acts on the outside, we’re all the same on the inside. We encouraged him to treat all children with equality, love, and respect no matter their appearance or behavior.
HELP THEM UNDERSTAND WHAT THEY CAN DO
We told Caden to include all his classmates in activities, to offer help whenever a need arises, and to never poke fun at someone for their differences. As parents, we can all make a positive impact in our community by taking the time to educate our kids about appropriate conduct and especially about the harmful effects of bullying.
SECOND, WE CAN REACH OUT
FIND OPPORTUNITIES TO ENGAGE PEOPLE
Opportunities will appear, whether at your current duty station or at one you’re PCS’ing to this year. Acts of kindness toward any person, especially to a parent or a child with special needs, can mean the world.
LEARN BEFORE YOU DECIDE
Snap judgments, uninformed suggestions and assumptions can be hurtful. Following Cole’s diagnosis, we spent countless hours researching the disease, drug trials, and therapies. Suggestions such as, “Did you try this” imply the family has overlooked an obvious solution. Instead, spend time gaining more insight about their specific situation and then go a step further and perform your own research later.
People sometimes assume that inadequate life choices and environmental factors caused the disability. There are countless reasons ranging from inherited disorders to unfortunate accidents. Without knowing any of that family’s specific history, an assumption related to the cause is unsupported.
Whenever someone says, “I’m so sorry,” “Bless your heart,” or “I don’t know how you do it,” I know in my heart that their comments come from a good place. People have even stopped in the middle of the street to stare. They are recognizing and appreciating that there are extra challenges. However, when it comes to our children, we see perfection and we want you to see that too. Extend understanding instead of pity.
As Cole grows, I’ve become aware of the language I use and how that will impact his confidence. Through my research, I learned that other people are guarded for the same reason; they don’t want to say the wrong thing. Here are a few recommendations for appropriate language choices to encourage dialogue. “Handicapped” and “disabled” tend to hold negative connotation.
We should all aim to omit the derogatory use of the word “retarded” from daily speech. A person is not a “victim” of a disorder nor do they “suffer” from a disability. Cole “is” not disabled; rather, he has a disability. We can also be conscious of the need versus recognizing it as a problem.
There is nothing “wrong” with Cole’s legs and he does not have a “problem” walking. Rather, Cole’s legs work differently and he has a need for a power wheelchair. These same concepts apply to any situation. Always remember, we’re all people first, with unique personalities, talents, and strengths. Keep that at the forefront.
If you’re curious, you can ask questions related to the child’s assistive devices, such as, “Are those cochlear implants?” or “Do you mind if I ask why he needs a wheelchair?” Out of respect, consider asking questions when the individual is out of earshot or ask the question to them directly. By asking questions with kindness, you display recognition that it could be a sensitive topic and you understand if they prefer to refrain from discussion.
If your questions are not received well, extend compassion and the benefit of the doubt. Be patient. Chances are, maybe the family has had a difficult day and just wasn’t up for talking about it at that time.
I’ve learned that as Cole’s parent and advocate I can help encourage communication too. When I initiate the conversation, people seem more at ease and willing to talk. I can set a good example by using positive language and focusing on what Cole can do instead of what he cannot. I also plan to help my children learn how to receive questions. There will be times when words and actions will be hurtful, but I hope to help them accept and seize this as an opportunity to educate and build new relationships.
Reflecting back to the day at the pool, the lifeguard didn’t do anything extraordinary. He treated us with equality and kindness and strived to make a connection, the same things every person wants and needs. So if you ever wonder, it’s ok to ask! Chances are we’ll welcome the opportunity to share. And who knows, you might make a new friend-and you might make someone’s day, just like that lifeguard made mine.