In my twenties, I needed support that was practical, consistent, and rooted in dignity.
I needed connection—real connection—not isolation disguised as independence. I needed transportation that allowed me to participate in community, work, and relationships. I needed the homes of my family and friends to be accessible. Why? Because relationships are deepened within homes, not confined to public spaces like restaurants and department stores.
I needed society not to pressure me to prove my worth or to be the representative of all people with disabilities. When I was eight years old, a teacher told me I had to work twice as hard to be seen as just as good as other children without disabilities. She said this after I made a C on a test. She told me that people would only see my wheelchair and hear my speech impediment caused by cerebral palsy—and that they would dismiss me. She said I had to excel at everything, not only for myself, but for the benefit of all people with disabilities.
That was an enormous burden to place on a child.
As I entered young adulthood, I needed people to actively counter that narrative. No one ever did. I needed permission to be an individual human being—not a symbol, not a lesson, not an inspiration. Had that happened, I believe I might have experienced more joy in my younger years.
I needed to live without the constant fear of losing my disability services—without the anxiety that one paperwork error, policy shift, or political decision could unravel my stability. Support should not be so fragile that it forces a person to remain in survival mode.
I needed politicians and community leaders to put action behind their words. Not performative allyship. Not promises during Disability Awareness Month. But policies, funding, and systems that reflected a genuine commitment to disabled lives.
I needed to see people with disabilities in positions of power. I needed visible proof that disabled people were valued and respected in this society.
I needed people to understand that I did not need to serve as their emotional dumping ground in exchange for my physical needs being met.
I needed organizations and businesses to recognize that if I was good enough to be an ongoing volunteer, then I was good enough to be compensated.
These were the things I needed then, and they are still what I need now, in my fifties. They are what people with disabilities need in order to be truly supported and empowered.
About the Author
Image Description: A woman with short purple hair and glasses sits smiling in a powered wheelchair on a wooden deck outdoors. She wears a light blue sweatshirt, gray pants, and white sneakers, with trees and greenery behind her on a sunny day.
Author Bio
Jody Michele is an independent disability consultant and a co-author of “Disabling Leadership”. She has both seen and unseen disabilities.