Author: Linda Wright

Linda Wright, author of "My Turn: When Caregiving Roles Reverse," now lives in Florida. She has served on the boards of organizations serving people with rare, genetic bleeding disorders like hers. As a writer, she has contributed to several anthologies and is a member of the Tallahassee Writers Association. Linda is married to the Reverend Ms. Robin Gray.

Pride

A diverse group of smiling people, including a woman in a wheelchair, a guide dog, and others, pose together in front of a colorful striped background.
~ Linda Wright

July is Disability Pride Month and I  have been thinking a lot about a poem Laura Hershey wrote in 1971 entitled “You Get Proud By Practicing.” It is one of my favorite poems. 

I’ve had more than seventy-five years to practice being proud. When I was a child I was the only one in my age group who had to go to the doctor for treatment if I fell down and scraped a knee. I was the only one who had to go to the emergency room for a nose bleed. By the time I was a teen, I didn’t know anyone else who had to see an orthopedic surgeon. Many adults and even other children focused on what I couldn’t do rather than what I could.

I wasn’t proud yet, but I also wasn’t ashamed or embarrassed by my disability. The over culture, or the attitude of the dominant culture, is one of ableism. It is learned at a young age. I knew that most people saw me as less than “normal.” The truth is that more than one in four adults in the United States have a disability. That sounds pretty normal to me.

When I finally met another teen in the early 1960’s who had a bleeding disorder, I believed I was lucky to be a girl. My new friend was a boy with hemophilia. In order for his father to be proud of him he had to play hockey. The battering his body took trying to make his father proud of him left joint injuries that could not heal. He needed a total knee replacement before he turned fifteen. 

It took years of practice before I could feel pride in my abilities. My disabilities have increased with age but I am no longer the only one in my age group who has a disability. I don’t feel like the odd one out anymore, but I don’t see many of my peers feeling proud. In fact many have internalized ableism, trying to deny their disabilities or cover them up in order to feel good about who they are.

They haven’t learned as Laura Hershey says:

 “You do not need
to be able to walk, or see, or hear,
or use big, complicated words,
or do any of the things that you just can’t do
to be proud.”

Who Are Your People

A group of young children stand close together outdoor with serious expressions. The children have different racial characteristics a school building with air raid siren on a pole is in the background.
~ Linda Wright

After a song by Lea Morris

Recently a friend asked me, “Who are your people?” She wanted to know who I could trust for help when I needed it. It is a question that has seemed loaded to me since I was a child. I remember two of my young friends demanding to know, “If you aren’t Irish and you aren’t Italian, then what are you?” I was only six years old. I didn’t know the answer and I didn’t understand why it was so important to them. I had not yet learned how ethnicity, race, and identity could be used as weapons.

In the mid-1950’s people said we were in a Cold War. We couldn’t trust the Soviet Union. They were not like us. An air raid siren that was routinely tested stood in one corner of the school yard. When it went off our teacher had us practice by lining up single file and marching quickly down the stairs to the basement where we sheltered in place. We were told we would be safe from nuclear fallout there. We crouched against a wall until the all-clear sounded. Then we marched back to our classroom and pretended that we didn’t think the exercise was both terrifying and foolish.

My childhood home was near an Air Force base. When a jet took off, loaded with supplies, it looked as if it would barely miss scraping the roof of our two bedroom house. The china cups in the kitchen cabinet rattled. Pictures on the living room walls tilted a bit more to one side each time the house shook. All conversation came to a halt as we waited until we could hear one another again. We learned to live with the frequent disruptions, ignoring the roar of the engines. I didn’t wonder what cargo the planes held in their bulging belly or who was being killed.

The war was no longer cold. First the planes were on their way to Korea and then they took off for Vietnam. At first, I was too naive to know that our people were killing people.

My father was six years old when World War I ended. He had believed that was the “war to end all wars.” When the United States entered World War II, Dad enlisted in the Navy. The ship he served on transported both equipment and personnel. Years later he was still troubled by how the black soldiers who came on board were mistreated. He did not understand why some people could be treated so differently.

If asked today, “Who are your people?” I would respond,”all people are my people.”

Pondering Progress, Problems, & Possibilities

A humanoid robot with blue eyes is shown on the left, with a digital circuit board pattern on a blue background on the right.
~ Linda Wright

After reading AI 2041: Ten Visions for Our Future by  Kai-Fu Lee and Chen Qiufan

Television was invented years before it became affordable for the general public. The first TV in our house was one that had been rescued from the trash and repaired by a family friend. Before I was old enough to go to Kindergarten, I sat on the floor following Miss Frances’ instructions. I parroted the advertising jingles, like “Pop, pop, fizz, fizz, oh, what a relief it is.” Along with the lessons, I absorbed in Ding Dong School I found out what toys I should ask my parents to buy for me and, what cereal tasted the best.

As people opted to stay home and watch TV for entertainment, fewer folks listened to radio performances. There was a drop in attending movie theaters and live events, leading to job losses. Actors, writers, producers, sound engineers and musicians all lost jobs if they could not transition to other venues to attract an audience. Over the years, most people learned new skills or found other ways of marketing their talent. 

My disability caused me to miss many days of school each year. In my teen years I was unable to attend High School, because I could not readily climb up and down stairs carrying a heavy load of books. I became an avid fan of daytime talk shows, evening news broadcasts, and nighttime situation comedies.

Having had more than my share of TV in my youth both at home and in hospital beds, I have opted to no longer own one. As a person who can no longer read print, I shifted my focus to streaming music, audiobooks, podcasts and online news sources.

In 2023 I first learned about GBT Chat 4. That was the year the world was just waking up to the potential of AI.  I listened in amazement to a panel of physicians on a podcast discussing how they would now be able to more accurately diagnose and treat rare diseases.  Now that a significant number of medical records had been uploaded  and humans had trained Open AI to understand complex questions, doctors all over the world could upload images and describe symptoms, then get reliable options to care for their patients.

In 2024 I learned that I could produce an audiobook version of my memoir for less money and editing time than using a human narrator requires. I began the search right away for a mature female AI voice that suited the tenor of my story. It felt like a dream come true. When I finished uploading my text, reviewing the narration, and fine tuning some sections that didn’t reflect the emotional content, I was pleased with the results. I now had a book that I, a person who cannot read print, can read. 

Much to my surprise when  I started telling people what I had done, most folks reacted with alarm. “You can’t do that,” was a common reaction. They said, “It’s too risky. It might be a scam” or “You’ll be taking jobs away from real people.” Even worse, many traditional book distributors would not accept my audiobook because I had not used a human narrator.

As a person who was born with a rare medical condition, I have encountered many doctors who neither understood or were willing to trust that I knew best what I needed to survive. It would have been wonderful if they had been able to use Chat GBT. I would have gladly used a human to narrate my memoir, but I did not have the funds, or time, or ability to use my own voice. As a person with a disability, one of the things I have learned is how to use new ways of accomplishing my goals. I wonder if that has made me understand that all change comes with a set of benefits and risks, gains and losses.

You can now purchase my audiobook from Libro.FM and other online booksellers.

O Dirt

Cuped hands holding soil and a small tree sprout
~ Linda Wright

After “Ode to Dirt” by Sharon Olds

Who did not love playing in dirt as a child? Not me. Maybe it was sand at the seashore or mud or clay that you scooped up in your fingers. Or were you a child who was cautioned that dirt was filthy and not to be touched?

The backyard of the house my parents mortgaged was dirt poor. The sandy soil had been stripped. It had lost the nutrients and organic matter that help plants to grow. Depleted, it was no longer fertile enough to make a vegetable garden thrive.

Once the ground had thawed in the spring, I watched as my mother collected all the vegetable peelings and uncooked scraps of food waste in a tub that was stored under our kitchen sink. At the end of each day she would take the bucket out to the backyard, dig a hole in the space where my father had cleared the grass, and bury her gifts in the ground.

When the maple and oak leaves fell in autumn, they were raked into piles that the neighborhood children jumped into. After we grew tired of rolling in the musty pile of crackling orange, red, yellow, and brown leaves, they too were given space in the ground where they rested all winter.

It was rudimentary composting that in time brought us juicy tomatoes, squash, and crispy pole beans each summer.

O dirt,

help us find ways to serve your life,

you who have brought us forth, and fed us,

and who at the end will take us in

and rotate with us, and wobble, and orbit.

—Sharon Olds

Lenten Sacrifice

Cluster of small green buds surrounded by pointed, serrated leaves on a stem, against a blurred natural background.
~ Linda Wright

Although it has not been a part of my religious practice in the past, this year I have things I want to give up during Lent. It will not be the cookies I have with my afternoon tea or the occasional meal I have that is not strictly plant based. But there are things that are both unhealthy and distracting that I am giving up during this season of sacrifice, in order to attain clarity. 

Lately my thoughts have been scattered. Like the tree branches blown over the ground with the recent wind and rain, I feel tossed betwixt and between. I spend more time  than I want reading and responding to email and social media. The books I want to read pile up and up. My relationships with friends and family go untended. 

This season is one of acknowledging death, and rebirth. As I am about to complete my 76th year of life I understand that time is precious. It is impossible to escape my mortality. I have fewer years of life before me than behind me. Dust will return to dust. My generation will be replaced by others.

Recently social media has capitalized on the human tendency to flutter from one thing to another. It keeps me scrolling way past the time I had planned to find some bit of information. Worse yet is that in order to hold my attention, much of what I stumble upon is designed to make me angry.

Years ago when I was leading workshops, I learned that distractions take precedence. It’s instinctual, probably a survival technique ingrained from our ancestors. If it is a single distraction, as when a comedian is interrupted by a heckler, the best advice is not to ignore it. 

That doesn’t work when the distractions come at an alarming number and frequency. Lately the distractions feel like the devil at work. Even though I don’t believe in Satan, I recognize that there are evil forces purposefully stirring things up, making me doubt my faith. I feel the need to return to a sacred practice.

Today the “news” seems to be less about what happened and more about what the consequences could be. I am feeling powerless, trying to figure out where to begin. It is hard to avoid the comparison with being lost in a wilderness and needing a time of solitude and reflection, in order to muster the spiritual energy to resist the evil forces.

During Lent, I am giving up the temptations of mindless busyness that have become addictive for me. Only then will I be able to pay attention to the things that mattered the most, rather than the myriad details that have been cluttering my thoughts. Perhaps it will reinvigorate me, giving me renewed energy to start where I am, use what I have, and do what I can.

Start where you are, use what you have, do what you can.
― Arthur Ashe