Celebrating Fierce #Firestarters
July is Disability Pride Month, and this week on July 26th, we mark the anniversary of the signing of the Americans With Disabilities Act in 1990. That means it’s a great time to salute the hard work and fierce dedication of #Firestarters with disabilities who are building movements for change.
I got to meet one such #Firestarter when I was writing my book “Find Your Fire: Stories and Strategies to Inspire the Changemaker Inside You.”
Alejandrina Guzman was the first Latina student body president at the University of Texas at Austin, and the first differently-abled student to serve in that role in the entire Big 12 Conference.
Alejandrina was born with diastrophic dysplasia. This condition affects the bones and cartilage, causing short limbs and other developmental differences. Doctors told her parents that Alejandrina, their first child, would not survive past 24 hours.
When she proved those dire predictions wrong, doctors kept cautioning her parents throughout her first year of life that the odds were against her. Wrong again.
“My parents have always instilled in me a ‘you can do it’ attitude,” Alejandrina says. That attitude really shone through when she decided leadership was for her. As she says in “Find Your Fire”:
It’s not me taking up space. It’s bringing people with me wherever I go.
More With Alejandrina
Over her first couple of years on campus at UT, Alejandrina saw student government as elitist, unhelpful, and not attentive enough to underrepresented students. In fact, she will freely tell you that she was probably the loudest complainer about student government in her friend group. So what changed? In “Find Your Fire,” Alejandrina tells how she went from doubter to student leader. Pick up a copy for yourself and for another #Firestarter you think has the potential to make history.
My Hidden Disability
I often say “you have to see it before you can be it.” In other words, sometimes we don’t know what’s possible for us until we see someone like us accomplishing it. That’s why it was important to me to share Alejandrina’s story — and to tell you my own.
You see, I have a hidden disability. I can’t see out of my left eye. (Well, I can see the big E when I take a vision test, but it’s incredibly blurry.) And I can’t hear anything out of my left ear, not even a vibration.
My family believes my vision and hearing loss was caused by an accident when I was 2: I tumbled into a coffee table when I was learning to walk. But we didn’t know the full extent of my disability until I was in fourth grade.
We were in Saturday Mass (yes, we went to Mass on Saturdays) and my mother whispered in my left ear. When I didn’t respond, she pinched me. (And, yes, I yelped. Right there in Mass.) I told her that I hadn’t answered her because I didn’t hear her.
That very next Monday, she took me to get a hearing test. Fortunately, she was an administrator at a school for the hearing impaired, so I was immediately able to get help. And they identified that I couldn’t hear because of nerve damage — which was also causing the vision loss we had assumed was “lazy eye.”
Over the years, I haven’t talked much about my impaired vision and hearing. I didn’t want anyone to think I was different and treat me differently. As time goes on, though, that is changing. One reason for that is that my disability has become more pronounced as I get older, and especially since my concussion in 2019. My right eye, which carries the load for me visually, isn’t as strong as it used to be. And being around loud noises is really uncomfortable for me now.
Another reason is that I know that I can help others by talking about my disability. It’s very likely that you know people like me in your own life – people who have developed a whole arsenal of tricks and workarounds to deal with their hidden disability. Maybe your quirky co-worker who always has to sit in front during presentations does so because, like me, they see or hear a lot better there. Instead of snickering behind their back, try asking why they prefer the front row, or they always ask you to sit on their right. You could learn a lot.
The other thing I would ask you to do is to remember that while we all have differences, there are so many more ways that we are alike. We all love it when someone smiles at us or opens a door for us. These little gestures show others that we see them.
Are you a #Firestarter living with a disability? I celebrate you, and I invite you to get in touch with me to share your story. Send me an email at Tribe@TerriBWilliams.com.
With Faith & Fortitude,
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