I heard my 13-year-old son repeating the words he has heard me say countless times:
“Yeah, her legs don’t work quite right.”
“She has to work harder to accomplish some things.”
“She can do whatever she wants to do if she has the support she needs.”
When a stranger questioned him about his sister who has a disability, Elliot could respond with confidence. He had heard his mama repeat these and other phrases repeatedly for years. He answered the stranger without hesitation and without apology.
He even went on to give some examples of what jobs his sister might have as an adult. And the stranger looked on in awe. The stranger, at first glance, had seen a young girl in a wheelchair with no spoken language. However, after hearing Elliot talk openly and confidently about her, the stranger felt more at ease with her disability and had hope for her future.
Other times, when Elliot’s friends had questions about his sister’s behaviors or actions, Elliot could respond to them. He repeated phrases that we used all the time. His rehearsed words and lighthearted answers could avoid embarrassment or awkwardness. And his confident words helped his young friends understand disability.
In contrast, I heard a story recently that made me sad. A teenage sibling of a young lady with a disability was asked whether she was the oldest child in the family. Even though this teenager was younger than her sister with a developmental disability, after a short hesitation, the teen answered that she, herself, was in fact the oldest.
Because the teen was uncomfortable with the questioning and wasn’t sure how to respond, she felt stuck and pressured to say that she was older than her sister. It was easier for her to tell an innocent untruth instead of explaining that her sister was older but had a disability.
It made me sad that just because this teenage sibling had not been armed with the words to use, she felt the need to respond in such a way that surely grieved her heart and confused her mind.
This story was a reminder to me of why it is important that we talk about disability. We don’t call it something else. We don’t ignore it. We don’t pretend like it’s not there. We talk about it and talk about it often.
We talk about it until we are comfortable saying the words. We talk about it in front of our children. We talk about it to friends. We talk about it to strangers. If we are afraid to talk about disability, then our children think it’s a topic to be avoided or to be ashamed of.
Is it something to be feared? No.
Is it something to be ashamed of? No.
Is it something that is misunderstood and misinterpreted? Yes. And it’s up to us to talk about it.
Learn more about siblings of children with disabilities in the Family Supports section.
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Parents have different ways of celebrating their children’s milestones. Often, parents who have a child with a disability celebrate the tiniest of milestones. It’s just a difference in perspective.