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Learning Self-Advocacy at a Young Age: My Experiences

Posted on May 26, 2022
Article written by
Lisa Velez-Batista

Historically, spinal muscular atrophy (SMA) has been difficult to diagnose. The doctors I saw as I was growing up in the 1970s had no idea what was causing the symptoms I complained of — frequent falling, muscle weakness and fatigue, and difficulty climbing stairs and getting up from the floor.

Without a diagnosis, my limitations weren’t taken seriously by the adults in my life. Words like “clumsy” and “lazy” were used to describe me when I wasn’t able to keep up with my peers. My mother began to believe that I was just making it all up for attention. I guess that was her way of dealing with the situation.

I knew that my father and grandmother believed that something was actually wrong with me. My dad showed me by giving me piggyback rides when I was too tired to walk. My grandmother let me know she believed me through the heartbreak in her eyes as she nursed my wounds after a fall. But they didn’t know what to do. The years rolled on while my parents continued to hope that I would outgrow whatever was causing my symptoms, and I was left to deal with my condition alone.

Impossible Tasks

In high school, I was expected to climb the stairs while carrying a heavy bag of books as far as the third and fourth floors. I waited for the stairwell to be empty and then used the banister to slowly pull myself up. Being late for class was a constant worry.

I was also required to participate in physical education. I tried to participate in the activities, but I just couldn’t perform the tasks that were asked of me. There was no way I could run while dribbling a basketball — or run at all. Diving for a volleyball to hit it over a net was another move that fell into the realm of impossible tasks. I’d wind up standing on the side and failing the class.

Breaking the Rules

One day on my way to school, I fell and tore my knees open. My best friend helped me up and handed me her elevator pass. It was given to her because she was asthmatic. I was worried that she would need it, but she assured me that she would say that she lost it and get another one for herself. At first I felt guilty using it because I knew I was breaking the school rule that only teachers and students with a pass could use the elevator. The guilt began to dissolve as life at school got easier.

As I neared graduation, I became concerned that I wouldn’t be able to graduate without passing physical education. I met a girl in gym class who stood on the sidelines like me. When I asked her why she didn’t participate, she told me that she was medically exempt from the class. I became excited at the prospect of getting out of gym.

I needed a doctor’s note. Since my mother didn’t believe me, I decided to take matters into my own hands.

Learning Self-Advocacy

I found a doctor in the neighborhood and asked my sister to accompany me and pay for the visit. After examining me, the doctor said that he didn’t know what was wrong with me; therefore, he could not write a note. With tears in my eyes, I explained that I couldn’t pass gym, which was a requirement for graduation. He reluctantly wrote a note stating that I was complaining of muscle weakness and wanted to be excused from gym class.

I was afraid that my teacher wouldn’t accept the note, but she did. My mother was upset that I went behind her back to get the note, but I was proud that I was able to take control of my situation. I graduated the following year.

Two years later, with the help of my grandmother, I got diagnosed with SMA 3. Although I was devastated to learn there was no treatment or cure, I felt a sense of vindication and was glad to find out why my body was failing me.

Gandhi said, “Strength does not come from physical capacity. It comes from an indomitable will.” The struggles that came from limitations in my physical capacity as a child prepared me for the challenges I’d face as an adult.

Hope for Future Generations

Today, 44 states have added SMA to their newborn screening. This means that 95 percent of newborns in the US are screened. I am comforted by the knowledge that one day all children with SMA will be diagnosed early. Early diagnosis leads to early treatment, which can save lives and lessen the suffering of children born with SMA.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

All updates must be accompanied by text or a picture.
Lisa Velez-Batista is a member and ambassador on mySMAteam. Learn more about her here.

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