Category: Disability

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.”

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.

Not Today

~ Linda Wright

One of the youngest members of our Fibrinogen Free community recently had a conversation with his cousin that went like this.

Cousin: “Do you have Hemophilia?”

Response: “Umm, not today.”

I think I know how he feels. I began this blog six years ago, and I haven’t posted in almost two years. Each time I think about posting I think to myself, “Umm, not today.” At 66 years of age I actually feel like I don’t have a bleeding disorder except for the few hours I spend each week being infused with Factor I.

The biggest change is that fibrinogen concentrate is now available and cleansed of known viruses. The standard of care is to use this concentrate on a prophylactic basis so that it prevents the deterioration of joint tissue and life threatening bleeding. And, gene therapy is in the works. Then there will be no more concern about what undetectable hazard has entered the blood pool. I believe it will not be long before Factor I deficiency is a thing of the past.

When I began this blog I hoped to find some more people who either had a fibrinogen deficiency or had someone who was a family member with little or no fibrinogen. We are a small group yet we know there are more. We learn from each other, support one another, and advocate together. I am grateful that folks younger than I are using social media to reach out and say, “Hello, you are not alone.”

Scars from bleeds in the past now limit my walking. I don’t climb stairs with ease. Knees, ankles, shoulders, and back aches remind me daily that being born with no fibrinogen has taken a toll. My brain does not function the way it did before a hemorrhagic stroke in 2002.

The more we know about preventing unnecessary bleeding incidents the healthier we will be. Because I am currently the oldest member of our online community I remember the bad old days viscerally. My body and mind signal the reminders of insufficient treatments or delayed medical attention. There are still many people who experience this needlessly. There are still doctors who do not properly diagnose or treat those of us with Factor I deficiency.

We all deserve to have more days when we don’t feel like we have hemophilia.

Trolls cannot change truth, but truth changes Trolls.

~ Linda Wright

In the weeks following my 61st birthday I faced my troll. The fearsome creature usually lives in the caves of my consciousness. It pops up threatening to swallow me on occasion. This time it leaped out and surprised me while I was undergoing my annual medical examinations and subsequent tests.

First I made appointments with the hematologist, primary care physician, gastroenterologist and physical therapist. Because my back pain was increasing, I scheduled an appointment to check my orthopedic shoe adjustments and inserts. I also booked an appointment with my dentist to talk about my toothache. 

The physical therapist evaluated my flexibility and strength and adjusted my weekly regimen; doubling the days per week I should spend practicing my routines. The dentist custom-made a night guard to prevent me from grinding my teeth in my sleep. That troll was definitely emerging from the cave.

The other doctors wrote orders for the routine lab tests, scheduled radiology appointments, and set dates for follow-up appointments. Grimly I began attempting to cross the bridge, checking off the list, so that I could reach the other side to (at least temporary) safety. It looked like the troll was creepy crawly coming my way.
 
I find that lists have a way of growing longer even as items are checked off. This list was no exception. No sooner had I checked off annual mammogram than I got a call to come back for an ultrasound for the suspect breast tissue. The evil troll appeared, smiling and licking its lips. I am a stubborn goat though, so I banished the troll with a promise that soon there would be a fatter goat to eat.
 
When the new shoes I had ordered arrived they had been improperly adapted and had to be returned so that the work could be corrected. The mouth guard has been adjusted three times already. The toothache isn’t gone but the neck pain and morning headaches have disappeared.
 
The liver function blood tests were drawn on the orders of the hematologist and a month later the gastroenterologist wrote another order for a blood test. The troll was not alone this time. They looked bigger than I had remembered while I felt smaller. It will still be a few weeks before I get all the results and until then I intend to befriend those nasty trolls.

New Years Eve

~ Linda Wright
 

There are ghosts on New Years Eve and hobgoblins too. I am sure of it. Like All Hallows Eve and Mardi Gras, it is a night to celebrate chaos, drunkenness and the seven deadly sins: wrath, greed, sloth, pride, lust, envy, and gluttony. My personal favorites are sloth and gluttony, However, I wonder if righteous indignation can be counted as wrath. If so, it would be at the top of my list.

My father used to say that one can only appreciate joy to the extent that one has known sorrow. I say that one can only be thankful for health to the degree that one has experienced disease and injury. Perhaps we can only value the potential for creation in our future after we have fallen into the abyss of chaos.

When I was a child, in bed and in pain from a bruised knee or swollen ankle, my father would say, “Things will be better in the morning.” They often were. Tomorrow will be the beginning of a new calendar year. Tonight the end of the old year is calling darkness and fear. Tomorrow, I will lean towards the future, but tonight I must embrace the past.