Years ago I met a man named John who was very strong when he was born. He was full of life. An intelligent little boy with a great sense of adventure. He began to walk when he was just ten months, but began to fall when he was 11 months. He was later diagnosed with polio.
During his first 14 years he required an equivalent number of operations to correct the challenge to his leg. Because his town was remote and the hospital was a difficult journey of seven hours from his family's home, John spent a great deal of time alone in the hospital. His family members, then, were other victims of the polio epidemic and the nurses who cared for them. In between surgeries, he either returned to his family's home, or when he required rehabilitation, which was frequently enough, he lived in foster homes in Athens.
His six brothers and sisters thought of him often. They wanted him to know that, but...John told me the story of one family receiving a package for him put together by his mother. It included all of his favorite things to eat, sweet treats and small games. He never got to enjoy that. Quietly the foster family members split it amongst themselves.
John remembers looking out the window at the children playing in the street below and wishing he could go out and play, too. He would think that he would see his brother, Michael, and call out to him. But it wasn't Michael. Michael was seven hours away. John spent many hours alone with his thoughts, searching for inner strength and courage. He learned to be alone and live in a limited space, yearning for life to be normal.
My heart sometimes broke as I heard his stories and watched his face. When he spoke he would take a step back in time as he remembered the past and it was all fresh for him in those moments. At one point, I noticed that this very strong man had tears on his cheeks.
When he was at his family's home John raced with all the other kids, played with his brothers and friends, swam in the Aegean, collected fresh eggs in the morning, began to learn to cook. He excelled in school and discovered that he loved music.
John had dreams and the dreams sustained him. He became a free thinker in a world that was, like most worlds, filled with rules and regulations, what you can do and what you can't. Because he was from such a small town, that was intensified for him. He forged his way forward in the world. He maximized all of the talents that he had and carved an important life for himself. That's courage. Courage to face life's challenges. More on that in a moment.
Today in the US and the rest of the world, there are people with different forms of disabilities and they all deserve an equal chance.
This year the US is celebrating 30 years of a transformative law, the Americans with Disabilities Act (ADA). This is the law that requires ramps, designated parking spaces for the disabled, curb cuts and school and work accommodations for those who have a wide range of disabilities, including for the blind and deaf.
Time magazine, in an article by Abigail Abrams (August 3-10, 2020), notes that the 61 million Americans with disabilities (that's 1 in 4 people) are less likely to confront problems that people had years ago, but the fight is far from over. Key issues for many disabled people are jobs, affordable and accessible housing, poverty and incarceration. The way many of these laws have been implemented requires navigating many complicated rules and regulations. But why?
To get to the passage of the ADA took many years, many people and millions of hours of activism, grassroots advocacy, and the rise of the Independent Living movement. As time went on advocacy became louder and resulted in banning recipients of federal funding from discriminating on the basis of a disability. It took sit-ins and protests to implement regulations that truly enforced the law.
But as Ms. Adams notes: equality in theory does not mean equality in practice. Violations abound. Disability-related complaints remain the largest category filed with federal agencies that enforce fair housing and employment laws. Still many businesses and institutions remain inaccessible.
Access to employment is out of reach for many people. Disabled people are still roughly twice as likely as nondisabled Americans to be unemployed and living in poverty. The pandemic is having a major impact even on this issue, reversing many of the strides that have been made in past years. That's a frightening realization.
"It takes creative thinking and problem solving to address these issues," says Keri Gray, who oversees the American Association of People With Disabilities' voter registration and civic engagement campaign. Many voting centers remain inaccessible for disabled citizens. Today, when voting is more important than ever, accessibility should not be an issue. Ms. Gray argues that advocating for disabled peoples right to vote should go hand in hand with fighting for racial justice.
We all need to be aware of these issues as we fight for equal rights. Especially during these times when change is becoming a watchword. Especially for those disabled individuals who cannot always speak for themselves or vote for laws that would make a major impact on their lives.
Back for a moment to John. John learned to embrace his disability, it is part of his identity. But sometimes it was difficult for other people to do the same. I know that. I actually know John by his Greek name, Yiannis, and have been married to him for more than 27 years. I am aware of how his disability has influenced our family and raised our own consciousness of the need for disabled people's rights.
Yiannis loves music and graduated from the Athens Music Academy. Early in his career he would play the guitar and sing in clubs in Piraeus and Athens, particularly in the Plaka area. Sometimes I think about the fact that it must have been difficult for him to get to his gigs, these cities are difficult for anyone to navigate and more so in those days 50 years ago. But he did it and happily.
Yiannis then secured a position at a radio station where he had his own program introducing new musicians or new works by established artists, gaining notoriety throughout what was then known as the Common Market. In his spare time he composed music for special documentaries about topics like the process of making honey, a key export from Greece. I have always been amazed that he composed music that truly sounded like bees making honey and it captured my own heart.
After our daughter was born his heart was so filled with joy that he composed his own music and distributed it throughout radio stations in Greece. He began to achieve further recognition for his work. Although we then moved to America, his beautiful compositions can still be heard in Greece and in places throughout our hometown.
It was not always easy for him. And our daughter knew that, too. She once painted the Acropolis for school when she was about ten years old. We saw it at an art show at her school for the first time. Each child was asked to explain their work and this is what she wrote:
"Acropolis, Athens, Greece. The Acropolis is a tourist attraction in Athens. Even though my father lived in Greece throughout most of his life, he never got to go there because he couldn't walk up the stone steps. He always waited below for his friends."
"Waited below." I don't want my husband or anyone waiting below.
When we next went back to Athens we visited the site of the Acropolis and by then attention to accessibility had become key. We were able to take an open air elevator up the side of the mountain (only a little scary!) and Yiannis could then tour the site, which was exciting for all of us and monumental for him that day.
Yiannis is famous in both of our families for his Greek cooking. I have raved about it from the beginning and it is our daughter's first choice whenever she has a chance to eat with us. He uses remarkable creativity in each plate that he prepares and he always laces it with love for his family and friends.
Yiannis has remarkable physical and mental strength and never questioned if he would come to America--of course, he was always going to be with his family. He left everything he knew, everything that rooted him, and found a new world.
As she concludes her Time magazine article, Ms. Abrams notes that the whole question of accessibility changes when a country is in the midst of a pandemic. With so many Americans suddenly working and attending schools remotely, and thousands experiencing lingering health problems, it's become commonplace to think about what it means to need accommodations, rely on family and friends, and depend on government support.
While the rules governing accessibility are currently in place in the US and many other countries, Ms. Gray notes the next call to action: how can we continue to uplift the legislation and how can we think about what else needs to come after it?
So many people are depending on this and much more.