Valley Life for All column: Meet Alea
The Post Independent, in conjunction with Valley Life For All, continues a monthly series of profiles about people in our community who have different abilities. Twenty-seven percent of Americans experience some disability. One hundred percent are a part of our community. Each has a story.
Alea Bahr is an enthusiastic, determined spirit. She loves to dance, laugh and play dress up and the color purple. Alea is 5 years old. Her story will change you.
Here’s Alea’s story:
Hi, my name is Laura Bahr, and I have two beautiful daughters, Annabelle (9) and Alea (5). Alea was recently diagnosed with FoxP1 syndrome after completing a whole exome sequencing at Children’s Hospital. People with FoxP1 syndrome often have intellectual disabilities, developmental delay and autism-like behaviors.
Alea is a precious gift, as is every child, but occasionally other people in society don’t view her that way. One day while shopping in Target we passed a lady whom I estimated to be in her 40s. Alea is extremely friendly and asked the lady what her name was. The lady nicely replied, and then Alea asked what her name was again. The lady repeated it, but then Alea asked for her name once more. Instead of responding, the lady looked directly at me. “You know,” she said, “there’s a great book named ‘Wonder’ that’ll help her [pointing at my older daughter, Annabelle] deal with having a sister like that.” And off she walked.
In the moment I didn’t want to draw additional attention to the comment, but you could argue that I should have. “A sister like that”??? Like what? One who loves to laugh, dance, play dress up and jump on the trampoline? One who cries when she is hurt and proud when she accomplishes a task? One who loves animals and whose favorite color is purple? One who might need to ask your name more than once in order to process it? And why is it acceptable to go from having a conversation with a young child to then speaking about her as if she isn’t there and furthermore doesn’t matter? Most likely the lady didn’t have malicious intent, and if you asked her she’d probably say she was trying to help. But her words demonstrated that she viewed one of my children as less deserving of basic consideration than the other.
Alea inspires people who know her with her enthusiasm, determined spirit and fun sense of humor. She is smart and capable. She deserves to be loved and nurtured just as much as any other child. I hope we as a society work together to educate and change the attitude of people like the lady we met in Target.
Local nonprofit Valley Life for All is working to build inclusive communities where people of all abilities belong and contribute. We want to hear your voice. Request a training or join the conversation ator #voicability4all. Help us redefine the perception of challenge.
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Visual Journalist Chelsea Self can be reached at 970-384-9108 or firstname.lastname@example.org