By Sarah Johnson
When my 4-year-old son was diagnosed with cerebral palsy, I knew life would be different, but I didn’t fully grasp how challenging the world would be for him. As my husband and I immerse ourselves in the world of disability parenting, we find ourselves fighting against physical and social barriers every day.
Before Ryan’s diagnosis, I never realized how inaccessible much of society is. Mundane activities like going to a restaurant or playground have become logistical nightmares. Are there ramps Ryan can navigate in his wheelchair? Will there be space for him once we get inside? Will my family be stared at while we are out trying to enjoy ourselves? The mental and emotional labour required to participate in the community is enormous.
Ryan’s disability shapes how the world interacts with him. Strangers often speak about him, not to him. His needs and accommodations are viewed as burdens and afterthoughts, not the civil rights he deserves. I find myself constantly educating those around us, pushing for inclusion and accessibility. My sweet boy has so much to offer, if only given the chance.
Trying to secure adequate support and care has become a full-time job. From fighting with our insurance to get Ryan’s mobility equipment covered to advocating at his school for proper services, I must be my son’s fiercest champion. The systems meant to help those like Ryan are convoluted and ableist. Wading through the red tape requires time and resources many parents simply do not have.
My greatest dream is for my son to be accepted, included and valued for exactly who he is. Although the prejudice, ignorance and lack of accessibility he faces wears me down, I will do everything in my power to clear his path. But I cannot do it alone. Progress requires all of us—disabled and non-disabled—to work together. Our society must shift to embrace disability as a part of our diversity. Every family deserves to feel supported while navigating the unique journey of raising a disabled child. I hope that by sharing our story, more voices will join me in creating a world built for all.
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