I grew up in an era when children often shied away from those who looked or acted differently. It’s true. We avoided peers who walked with an unusual gait, those who breathed heavily, kids in leg or back braces (though braces for teeth were somehow acceptable), and classmates who had seizures. We even steered clear of those who spoke with a slurred voice or navigated the school in wheelchairs. I can’t help but feel ashamed of that behavior.
I never actively bullied anyone; I simply treated them as if they didn’t exist. I recall a girl who had scoliosis, struggling to breathe as she spoke. Her slow, labored voice made me uncomfortable. Was I irritated by her pace? Perhaps, but I lacked the understanding that her every word was a triumph rooted in years of physiotherapy after doctors told her she might never walk. In the 1980s, we were far from enlightened.
In seventh grade, one of my classmates had a seizure during recess. We all stood by, watching in silence as teachers called for help. He returned to school the next day, appearing “fine,” so I never asked him how he was feeling. I can’t fathom the emotional and physical effort it took for him to come back to school and face those who had witnessed his ordeal. We continued our lives, and they continued theirs. I wasn’t malicious, yet my actions were far from kind.
Reflecting on my past, I grapple with the disconnect between the child I was and the mother I’ve become. Not just any mother, but one raising a son with a rare genetic disorder. My son, Max, lives with chronic lung disease due to ribcage and chest wall deformities. His bones don’t develop as expected. Recently, he’s begun to take unassisted steps, albeit with a wobbly gait intensified by the leg braces he’s worn for three years. He relies on supplemental oxygen and uses a noisy machine to help him breathe at night. Sometimes he struggles to articulate his thoughts.
The irony isn’t lost on me. I can’t change what I did as a child, nor can I pinpoint the source of my former fears. I was just a kid, after all, influenced by a culture that often silenced genuine curiosity about disabilities. Back then, disability was often feared and viewed as something that “happened” to families.
Given my experiences, I could easily default to anxiety about Max’s future social interactions. Will he sit alone on the bus? Will he be overlooked during gym class? Surprisingly, I find comfort in the progress we’ve made.
The most significant change since my childhood is the rise of the Internet, which has amplified the voices of people with disabilities. In 2023, I can access blogs and resources about parenting children with Down syndrome, spina bifida, cystic fibrosis, and various mental health challenges. I can learn from a range of perspectives, including healthcare professionals, parents, and the individuals themselves.
We now inhabit a world where kindness is the expectation, and unkindness quickly becomes socially unacceptable. With social media capturing our behaviors, acts of rudeness can be called out, promoting a culture of kindness. This shift provides a strong foundation for compassion, and it’s our responsibility as parents to nurture this ethos.
Let’s teach our children to inquire about their classmates who may be struggling. Remind them that simply attending school is a remarkable achievement for those who navigate life differently. Encourage them to ask questions and foster understanding about these differences. Together, we can steer them towards a kinder future, far removed from the mindset I encountered in the 1980s.
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Summary
The author reflects on her childhood perceptions of disabilities and contrasts them with her current experiences as a mother to a son with a rare genetic condition. Emphasizing the importance of kindness and understanding in today’s society, she encourages parents to foster empathy in their children towards those with disabilities, highlighting the positive cultural shift facilitated by the Internet and social media.