The Unexpected Gift

When I was born, my parents got way more than they expected. It was the mid-70s, before sonograms were widely used. They had little idea of what was to come. I was born with a birth defect, Spina Bifida. The defect would affect my ability to walk for the rest of my life, but when I arrived, my mom and dad did not know how serious my disability was. The doctors told them I would never walk and most likely have a severe intellectual disability. They placed me on a ventilator, and the doctor advised my parents to “pull the plug”. My mother would not accept that. This is the first of many times, in my life, she would not accept the status quo.

When it was time for me to go to school, they encouraged my parents to enroll me in Special Education. I was mobile with the aid of crutches and relatively bright (the doctor was wrong on both counts). Despite this, the local Board of Education believed being in Special Ed would give me services that wouldn’t otherwise be available. By the time I reached first grade, my mom realized I wasn’t reaching my full academic potential. Again, she wouldn’t accept this. She fought the New York City Board of Education, and they eventually placed me in a “regular” classroom with additional services. My mom rarely accepted what she was told if she didn’t agree with it. I eventually learned this from her and still follow her example today. As a disabled person, I have to advocate for myself regularly, just like my mom did when I was too young to do it for myself. 

My mom was not the first in her family to adopt this philosophy. Her grandmother (my great-grandmother) spoke up when she didn’t agree and advocated for what she thought was best for her family. She did this in a period when women did not do such things. My great-grandmother wanted to leave Italy for a better life in America. My great-grandfather was adamantly against it. She raised the money for the voyage on her own. Her cousins sponsored them for immigration. She did everything to convince my great-grandfather to leave Europe. He finally conceded after she had made all the arrangements. 

Upon arrival, immigration wanted to send my great-grandparents back to Italy because my great-grandmother was sick. She told her husband to tell immigration that she was pregnant, not sick. He refused, so, to her great embarrassment she told an immigration officer the dilemma, so they could stay.

I’ve learned so many things from the women in my life. I’ve learned not to accept anything that is not right for me. I’ve learned to fight for what I believe is right. I’ve learned that no one will fight for me or advocate for me more than I could ever advocate for myself. If I want to do something, I need to make it happen for myself. Doing all of this has made me more independent (in a good way), more confident and more outgoing. I have also learned to speak up for myself and my loved ones. 

It’s true that this did not happen overnight. It took me decades to get where I am today, as a person. My great-grandmother passed when I was a pre-teen. My mom succumbed to cancer in her 50s. This was the one time in her life in which she had no choice but to accept the situation. Unfortunately, I did not fully appreciate the lessons that they taught me until after they were no longer here. I wish my mom and great-grandmother were here today, so I could thank them and show them the man I am today because of their example.