First Grade-How My Advocacy Started

I have spinal muscular atrophy (SMA), a condition that affects my muscles and mobility. But the amazing part is that I went to a regular school for first grade way back in the late '80s, long before the Americans with Disabilities Act (ADA) was in place.

Needing an inclusive environment

I went to school in the '80s, and the concept of inclusive education for students with disabilities was not widespread. The Americans with Disabilities Act (ADA) was not passed until 1990!

Without built-in protections for disabled children in educational settings, kids like me were put in special education classes. In special education classes, the system believed the curriculum was tailored to all the needs of any disabled child. But my needs were only physical, as I used a wheelchair full-time, so I did not need the access the special education classes brought. My mom, well, realized that the school’s traditional practices for disabled children were outdated and did not properly meet my needs, so she decided to shake things up.

My mom, my hero

Schools at that time weren't fully equipped to accommodate students with physical disabilities, let alone include them in regular classrooms. My mom was determined. She had to convince school administrators and teachers that I could excel in a regular classroom.

My mom was such a firecracker that never let up on talking to the next higher up on the educational chain until she was able to reach people who could help her in keeping me in normal curriculum classes and still provide my physical needs. It was a real uphill battle that demanded a lot of her dedication and persistence.

The superintendent of our school district had a unique reaction to my mom's advocacy. Every time he saw her coming, he'd quickly dart away! It was as if he had a superpower for avoiding meetings with my mom. His efforts to evade her were both comical and memorable, adding a touch of humor to our journey and fight. My mom's determination was so fierce that even the superintendent couldn't help but admire her tenacity, despite his very real attempts to avoid her!

Navigating physical barriers in first grade

So, when I finally stepped into that first-grade classroom, it wasn't all smooth sailing. I had my share of challenges. The physical barriers were evident, from navigating the school's infrastructure to participating in physical education classes.

However, what shone even brighter was the incredible support system around me. My classmates, teachers, and school staff were all on board with the idea of inclusive education. As much as the administration was afraid my mom was headed in their direction for more ‘things Allie needs to thrive’ in education, they did their best to provide what I needed. 

They made a bunch of adaptations and accommodations for me, just to make everything work. There were accessible ramps, specially designed seating, and a curriculum that was inclusive of all students. They also aided me when I had to get to and from school and needed help with toileting at school.

Groundbreaking advocacy

What's truly remarkable is that my mom's advocacy wasn't just for me. It was groundbreaking, and it paved the way for countless other children with disabilities. The schools I went to were more prepared for students with physical disabilities and many of them did not have to fight so hard and have told me as adults how thankful they are for my mom’s fight for all disabled students. 

She made a solid case for inclusive education, emphasizing my cognitive abilities and the fundamental principle that every child deserves equal access to education no matter what needs they may have.

My mother's advocacy shaped me

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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