Stop Whispering and Start Talking with Kids about Disabilities

Chatting with Nolan Photo Credit: Seth Stratton

Chatting with Nolan Photo Credit: Seth Stratton

Since my writing focuses on athletes who play sports in adaptive ways, many parents and friends have been asking me about how to talk with kids about disabilities. I am no expert, but I do have experience from discussing differences with my students in the classroom or at home with my own children. I have not handled all of these situations perfectly, but I have learned that there are some strategies to make the conversations more meaningful and authentic. Here are my top 5 tips for talking with kids about disabilities and exceptionalities, and I included some of my own real life “mom” scenarios to help.

1. Speak up. There is no need to whisper. When we lower our voices and answer their questions about a disabled person in a whisper, we are implicitly telling our children this topic is not appropriate to talk about and we have to be careful with what we say. Instead, we need to speak up.

Caitlin: “Mom, why is that boy in the family locker room with us? He is in a wheelchair.”

Me: “He probably plays a sport. Why don’t you ask him what he plays?” 

Caitlin & Me: “Excuse me, we were wondering… what sports do you play?”

Little Boy (with a grin): “I ski, swim, and play basketball.” 

2. Follow their lead, but guide their path. Children are curious observers of their world and they want to share their observations. When they share their observations, they do it from their own perspective and with their own vocabulary. We need to acknowledge their observations and help them develop their language for clarity and to promote inclusion.

Little Girl with Braces Photo Credit: nohandsbutours.com

Little Girl with Braces Photo Credit: nohandsbutours.com

Caitlin (while pointing): “That little girl is wearing braces.”

Me: “Yes, she has braces on her legs.”

Caitlin: “She walks funny.”

Me (taking a deep breathe): “Her legs work differently. There are lots of ways to move, and she is headed to the library just like us.”

3. Encourage questions and reflection. Children have questions, lots of them. You don’t have to know all of the answers. You just need to be a curious listener and encourage them to reflect critically.

Man with Service Dog Photo Credit: blog.lrn.com

Man with Service Dog Photo Credit: blog.lrn.com

Nolan (my rule following and anxious child): “Why does that man have a dog in here? Isn’t that against the rules?

Me: “From the harness and vest the dog is wearing, it looks like he is a service dog. Do you know how a service dog helps people?”

4. Be curious and learn more. Differences are beautiful. Disabilities and exceptionalities give all of us an opportunity to learn more about each other and how many different ways there are to do every day tasks. It is okay to ask questions. Investigate the world with your children and learn more about it.

At an exhibit hosted by photographers with varying disabilities, Nolan asks, “Mom, he has no arms. How can he take pictures?”

Me: “I don’t know. We should ask.” 

Nolan tentatively follows me over to the young man in a power chair.

Me (putting my arm around Nolan): “We love the photo you took of this young girl. We were wondering how you took it.”

Photographer: “That is my niece. I love taking pictures of her. I mount the camera to the end of my chair. Then, I use my baseball cap with this wand attached to the brim and a stylus attached at the end to focus and snap the shutter. I am really working on how I use the light in my photos.”

Nolan (moving away from me and pointing at a photo): “Yeah, I like the shadows in the picture of the telephone lines.”

Photographer: “Yes, it’s one of my favorites.”

5. My favorite response to any questions kids have that I don’t know how to answer: “That is a great question. Let’s research it.” ChoosingQuestion_alexsl

AN UPDATE: This post was originally written over 5 years ago before we adopted our youngest son, Ian, who has physical disability. Prior to Ian joining our family, I was only familiar with navigating the world with a child who had an invisible disability. With time and more experience, I would like to add two more tips-one on language and one on asking questions.

  1. Disabled and disability are neutral terms that do not have a negative or positive value. These terms can help one see the whole person and his/her experience in the world. When my child refers to himself as disabled, it gives him a voice and empowers him to identify barriers that he is experiencing.
  2. I still encourage asking questions. I especially appreciate curious children because I have three of them with very inquisitive minds. However, don’t expect an answer when you ask a question that choice belongs to the disabled individual.

Finally, here is a great article by Godrey Nanyenya if you are looking for more resources.

On Being the Change- Step 1: Choose Your Words Carefully

Step 1: Choose your words carefully.

Words are powerful. Words can evoke strong emotions. When they are selected carefully, they can educate, empower and inspire. They can be used to change the ideas of one individual or to generate a movement among thousands.

When words simply spill out into the world, they can lead to misunderstandings and misconceptions. Misplaced words can create pain and disappointment. They can even build barriers and breakdown the human spirit. How do you plan to use your words?

I plan to use my words to make the world a better place. I will use my words to embrace others and unleash their potential. Here are a few ways I plan to use my words to be the change I wish to see in the world:

1. Disabled to Exceptional. My son, Nolan, was born prematurely. From his very first moments on Earth, he struggled to coordinate the instinctual skills of sucking, swallowing and breathing. These seemingly innate actions needed to be coached. Actually, he was delayed in learning all the early developmental skills like crawling, walking and talking and required hours of intensive therapy. Now, at the age of ten, he has mastered most developmentally appropriate skills. Writing remains a laborious task, and tying his shoes seems to elude him. Fortunately, technology can replace the pencil, and Velcro can secure his shoes.

After nearly a decade of triumphs and tribulations, we have come to realize that Nolan’s brain is wired differently. According to the CDC, he is “disabled.” However, this label seems amazingly inaccurate for my son. The word “disabled” unfairly places limitations on Nolan’s abilities and potential. It creates barriers and makes me want to shout, “He can do ANYTHING!” His learning differences are beautiful. His unique brain deserves to be celebrated.

When I talk about Nolan and the challenges he faces, I choose my words carefully. I use them to empower and unleash all of the potential in my son. This is why I tell the world: “MY SON IS EXCEPTIONAL!” DSC_0541    And then I smile, knowing I have used my words to make the world a better place for him.

2. Handicap to Accessible. I recently learned about 3ELOVE (www.3elove.com ). It is the brainchild of Annie and Stevie Hopkins, two exceptional individuals, who are re-conceptualizing the International Sign of Accessibility that was originally developed in 1968. The redesigned symbol is being used to EMBRACE, EDUCATE and EMPOWER the world about individuals with exceptionalities.

Accessiblity Sign3e_love_embrace_educate_empower_sticker__80183

My children and I immediately connected with the 3ELOVE message and bought various 3ELOVE products including t-shirts. When the t-shirts arrived, the kids couldn’t wait to wear them.

Caitlin proudly wore hers to a birthday party, but I wasn’t totally prepared for what happened. On the ride home from the party, she told me a peer asked her, “Why are you wearing a handicap sign?” I asked her how she responded and, un-phased by the incident, she stated, “I told her it was my wheelchair rugby shirt.” Nolan reported a similar experience at school, but his response to the question was, “It’s about 3ELOVE.”

I then realized I hadn’t prepared my children with the accurate words. So, I explained to them that when we see this symbol posted in parking lots, on bathroom doors or on buttons near doorways that it means “accessible.” The symbol is there to let everyone know that if you need more space to move or if you need the door to open for you, it is available. It does not mean “handicap.” When we choose our words carefully, this International Symbol of Accessibility means: “All are welcome here.

Accessible2010

3. Impossible to Possible. In the winter of 2010 when I was teaching full time at the college-level, working on my doctoral degree and raising two children under the age of five, I was overwhelmed. I was considering giving up on my studies. All I could see were barriers. Then, I made a critical decision. I got rid of the word “impossible.” By removing that word from my vocabulary, I was forced to think of everything including balancing work, studies and family life as “possible.” Ridding myself of this word shifted my thinking. This resulted in me finding new ways to make it all work. Some solutions were simple like asking family members to babysit more. Some solutions were hard like getting up at 4:30 a.m. to write papers. But, it all became possible. And finally, in May 2013, I received my doctoral degree and my children cheered for me as I proudly walked across the stage.

This idea of possible versus impossible has became even more evident during my interviews with Nick Springer. Becoming a quad amputee at the age of 14, Nick embodies all things possible. Despite his amputations, he can drive, send funny text messages, travel around the world and play a very mean game of wheelchair rugby.

Nick Blocking

In fact, the more I research athletes who play adaptive sports, the more I realize that anything is possible. For example, Mark Stutzman, member of the US Archery team and 2012 silver medalist in the London Paralympic Games, can shoot a bow with incredible precision using his foot and mouth. He also hunts and raises his three boys with his wife, Amber.

stutzman_matt_2_600x375

When we choose our words carefully, we can create change in ourselves and in others. What does this change look like or sound like? It appears in simple moments. Here is what happened recently in my home when my daughter was completing her math homework:

Mommy, the problem says Brendan has two bandages on his fingers and they want to know how many fingers don’t have bandages. I think they want me to write 10-2=8, but it depends. It could be 5-2=3 or something else. It all depends.”

With carefully chosen words, one person can create change. It’s time for you to decide, “What will I do with my words today? Will I break down or build up?”

I plan to choose my words carefully and to use them to educate, empower and inspire change.

robinwilliams

Believe in the Possible,

Jen