This Able Team Interview, Part 2: Why I Founded Whispers of Hope

This is my second post about my interview with This Able Team. The transcript follows and you can read it on their Instagram, too. Just click here. Be sure to read their other posts, too, especially with Dr. Sean P. Dineen.

The photo is of me as a little girl with my dance teacher, the great Al Gilbert, who taught me to dance when the doctors said I would never walk.

Here is the transcript:

“I started Whispers of Hope back in 1989. I started it because I wanted to give myself to other people, to tell them that they’re not alone, that they can do whatever it is that they desire and what they want with their lives. I could be a voice to help them get through it. I speak professionally and I give my time without any charges to people who need it. That’s what I’ve done. Actually, I started advocating when I was a small child in grammar school. I had a girl friend who had cerebral palsy as well, but it was far worse than mine, and she was quadriplegic and had a speech impairment, she couldn’t do anything for herself. I used to help her in all ways, I used to feed her, we used to do homework together, we used to do everything together.

It was a beautiful interaction, it went through elementary school, junior high, and high school. When we graduated high school, somehow we just hooked up at the same junior college, Santa Monica College. We just kept our relationship from then on and it just built. We were there for each other. I don’t remember a time when there were many people in the schools who would do what my girl friend and I did, help each other be there for each other instead of bullying and hurting each other. We were there for each other and it made sense. It was almost like a family outside of a family. We were helping each other and empowering each other. When we had our appointments with the doctors, we would empower each other there. We would just work and give each other words of hope and encouragement, always.”

The Healing Horse, Ch. 19, Scene 10: Maneki Neko

image of ceramic maneki neko In this scene, little Kitten learns to tie her shoelaces, which is a challenge for many people, but remember that she has to do it with only one hand.

(Image by Searobin, CC BY-SA 3.0, via Wikimedia Commons)

Scene 10: Maneki Neko

A few weeks later, Miss Kimiko taught her to tie her own shoes. Mama had tried for years to teach her, but she had not had the right techniques and tools to help Kitten master this task.

“Hi Maneki Neko,” Miss Kimiko said to welcome Kitten. Maneki Neko meant lucky cat in Japanese. When Miss Kimiko spoke those words, Karen’s heart always lit up.

“Hi, Miss Kimiko,” Karen replied with her biggest smile. Miss Kimiko allowed Kitten to call her by her first name because there was a warm bond between them. Karen would always treat her with dignity and respect, just as she treated Karen.

“I am so glad to see you, today, Kitten. You are looking chipper, as always!”

“That’s because I’m here to see you, today!” Karen replied. “Am I still going to learn how to tie my shoes?”

“Ah, yes, you sure are. You are going to be the best shoelace tier in the greater L.A. area,” she kidded.

“What are we waiting for?” Karen asked in an imitation of Mr. Hinton’s voice. Miss Kimiko knew Mr. Hinton, and they both laughed.

Quietly settling Karen into a chair at the table, Miss Kimiko put a square of plywood in front of her. It had a leather shoe stapled to it, so that Kitten could practice tying her shoelaces without bending over to the floor.

“You take the two ends of the shoe laces, fold them over and under twice until nice and tight. Then you make one rabbit ear…”

Karen listened and watched carefully. After several tries, she mastered the skill of tying her shoelaces, and so Miss Kimiko taught her many of the basic skills of independent living.

The Healing Horse, Ch. 19, Scene 9: Miss Kimiko and Making a Stronger Left Hand

image of occupational therapy tools

This scene introduces a positive character, who counterbalances the twisted Mrs. Schmidt that we just met. Occupational therapists use all sorts of creative ways to help people of all ages improve their lives. For more about what they do, click here. (Image of some occupational therapy tools by Ashashyou, CC BY-SA 3.0, via Wikimedia Commons)

Scene 9: Miss Kimiko and Making a Stronger Left Hand

In contrast to Mondays, Thursday mornings could not come fast enough for Kitten. She looked forward to her weekly session with Miss Kimiko, the occupational therapist. It was like going to playtime with Tammy. Unlike the gloomy PT room, the occupational therapy room was filled with light that came through its spotless windows. The kitchenette with its chairs and table was spotless. The toys that helped her build dexterity were always clean. The floor was polished. The room had a feeling of quiet peacefulness that contrasted happily with the gloom and sullenness of the physical therapy room.

Miss Kimiko, the occupational therapist, wore her black, shoulder length hair in a stylish flip and outlined her brown eyes with medium black eyeliner that made them look bigger. She stood less than five feet tall and had a medium build. Unlike Mrs. Schmidt, she wore a neatly pressed cotton uniform. Even more unlike Mrs. Schmidt, she always smiled broadly and welcomed Kitten to each of their sessions. At every session, Karen learned something new and felt inspired to learn more.

One week, Miss Kimiko gave Karen two plastic squeeze bottles. They were connected by a flexible tube that went through their lids. The one that Miss Kimiko put into her left hand was full of water and heavy. The one for her right hand was empty and light. When Kitten automatically tried to trade the bottles, so that her strong right hand would hold the heavy one, Miss Kimiko gently stopped her by holding her wrists.

“Okay, Kitten, today we will play with these bottles. This will make your left hand stronger and help you learn to use both hands together. Okay? Does that sound like fun to you? You have a habit of using your right hand for everything, but today we want your left hand do the work. We will make it a strong hand, too. Okay? You can pretend you are squeezing chocolate icing onto a cake. That will make it lots of fun. Okay?”

Karen smiled and agreed. In a flash, she realized what Miss Kimiko meant about relying on her right hand. This was a turning point for her. Even though she knew that her left hand would never become as strong as her right, she was inspired to use it, and it did get stronger.

Did You See Me on Humans with Disabilities?

I was recently interviewed by This Able Team, and I want to tell you about it. The team is a group of people with the motto Fostering a disability community one story at a time.

Here is a transcription of their first post about me. You can jump right to it on Instagram by following this link.

Please let me know what you think! And be sure to check out the stories about my friend Dr. Sean Dineen.

Post 1:

“After the DPT shot, I went into a coma as an infant. It left me having left-side hemiplegia cerebral palsy, which is being paralyzed on one side. My right hand functioned normally, but there was very little that I could do with my left. My right leg was also normal, but it took several years of dance training before I was able to walk on my left leg without a brace. On top of that, several years later, my mother found that I had dyslexia. That explained why I could learn when given information orally, but we found that I got all mixed up when I had to do the written word.

I’ve faced a lot of challenges as a person with a disability. Despite having cerebral palsy and a learning disability of dyslexia, I have repeatedly done things that ‘normal people’ thought were impossible for anyone with a disability to do. I express my determination in many ways to make that possible for myself and to make the best life for myself. I became fearless and courageous, turning each and every experience into a positive affirmation and solution. Nothing was going to stop me from doing and adapting and being like ‘normal people’ in this world.

I found a seed deep inside of me, that said I wasn’t going to be defined by anybody, and that I was going to live my life just like everybody else in the world. I wasn’t going to sit in front of the TV and watch Popeye the Sailor Man. I wasn’t going to let anyone tell me that I was dumb, or stupid, or that I couldn’t learn, because that’s what they were doing. I had to prove to myself that I could take on the challenge and overcome every single obstacle in my path. And that’s exactly what I did. I tuned everything out around me, and every person who told me that I couldn’t. I came up with my own mantra: ‘You tell me I can’t, and I’ll show you I can.’

I have always felt grateful for my disability. I could have been far worse off. Thus, I remember every day that this is just a mere inconvenience. I always believe that my disability is a reminder to be an instrument for good in the world and a shining light. It has become my source of good to help share my voice and experience with others.”

The Healing Horse, Ch. 19, Scene 8: Aspirin, a Heating Pad, and Mama

image of bayer aspirin ad

In this scene, the sad story of Mrs. Schmidt continues, as Karen returns home and her mother points out that, even though the little girl’s ideals are high, her mother must deal with reality. Go Mama!

(Bayer Aspirin ad originally appeared in New York Times in 1917. See page for more info, Public domain, via Wikimedia Commons)

Scene 8: Aspirin, a Heating Pad, and Mama

Karen brought her mind back to the bus ride. The new house is a lot farther from school. We still have a long way to go.

The evening after her disastrous physical therapy session with Mrs. Schmidt, Mama had given her an aspirin and put her to bed with their heating pad on her throbbing knee.

Mama sat on the edge of the bed and hugged her, while Kitten told her what had happened.

“Mama, I wonder whether Mrs. Schmidt’s treatments are helping me or hurting me. My muscles always feel tighter, afterward, and they should be looser.”

Then she told Mama about Mrs. Schmidt and the Nazis, and about learning to deal with reality and bearing pain and accepting being inferior and helpless.

Mama’s face turned a deep gray, and she slowly stood.

“I thought this was all over—the Nazis and the cruelty and the torture and the anti-Semitism. I can’t believe that this Mrs. Schmidt can treat you this way and brag about her Nazi sympathies, too. How can she get away with this? With you or with anyone? You would think she’d be fired. I cannot understand why the school is employing a person with Mrs. Schmidt’s beliefs, especially to work with handicapped children. I understand that Mrs. Schmidt’s sad childhood may have shaped her ideas about life, but her cruelty is unconscionable.”

Karen replied that she felt she understood Mrs. Schmidt. She would treat Mrs. Schmidt more compassionately. She did not take Mrs. Schmidt’s behavior personally. She would treat Mrs. Schmidt with kindness, as one would a sick person.

“It’s time for you to sleep, my Krana Layala. You are in pain, and your body has been injured. You must rest so you can get up in the morning and do your best at school. You have high ideals, but I must be a realist. I promise that you won’t have to deal with this poor, sick Mrs. Schmidt much longer. You may have some handicaps, but she is completely wrong about you being inferior, and about you having to accept anything you don’t want to. You go to sleep, now. I need to call Mrs. Sinclair and talk this over with her.”

The Healing Horse, Ch. 19., Scene 7: On the Mat

image of Statue of Liberty with fireworks

Happy New Year, everyone. This has been a big year for me (Karen Lynn) and for Whispers of Hope. We now get almost 6,000 visits to the website, monthly. The count is growing, too! So, my message of hope in the face of reality for those of us with disabilities is getting out there, and that is wonderful for me! (Image courtesy of Kuldeep, CC BY-SA 4.0, via Wikimedia Commons)

In today’s post, little Kitten (that was me) is tortured by a sadistic physical therapist, and all under the auspices of a school district. As Stan Lee said, “Nuff said…”

Scene 7: On the Mat

“Karen, have a seat on the gray mat. We have a lot to do, today,” Mrs. Schmidt said with a sneer. “And please remember to remove your shoes.”

Karen looked at Mrs. Schmidt with a neutral expression, as if she had heard nothing from the hallway. She ignored the implied insult that she could not remember to remove her shoes before stepping onto the mat. Thick and gray, it rested on a wooden platform, three inches above the floor and a yard from the door. Karen sat and removed her James and Williams high-top brace shoes. After coming to Mrs. Schmidt for a month and a half, she knew what would happen, next, and that she would come out of the therapy session feeling like a half-ton pickup truck that had been hit by a thousand-ton locomotive.

Without looking up, Karen slipped off her brace and right high-top shoe, and then lay down on her back. Mrs. Schmidt sat down hard beside her. Karen noticed that Mrs. Schmidt always left her own shoes on. Perhaps the laced, two-inch heels were hard for her to get off and on, or perhaps wearing them gave her a sense of power.

Mrs. Schmidt straightened one of her own legs, and then grasped Karen’s disabled left hand. After pulling Karen’s arm as straight as she could, she placed Karen’s elbow on her thigh. Using her thigh as a fulcrum, she pressed down on Karen’s wrist, forcing Karen’s elbow to straighten all the way, and then bending the left wrist and fingers back to hyper-extend them.

“Oh, boy!” Karen said softly, in a tone of mock eagerness, then, “Ouch! That hurts! Can you be a little gentler with me, please?”

Mrs. Schmidt smiled in her hard way and looked Karen in the eye.

“You cannot always have your way, my dear girl! Life is about dealing with pain. You have to learn how to handle it, sometime. You’ve been sheltered too much. You have not lived a life like mine. Once, I was a child, too, and I saw people destroyed because they were handicapped or weak.”

“Really,” Karen replied in a sympathetic tone. Mama had told her about the Nazis killing handicapped people as well as Jews, so she knew she would have been at the top of the list for the concentration camps.

“Ja! I learned the hard way how the real world works.”

For a moment, Mrs. Schmidt’s voice had softened, and Karen thought she might have reached her emotionally, but then Mrs. Schmidt loaded on more pressure.

Kitten’s left arm felt like a coiled spring being unwound. Other therapists had extended it slowly with little discomfort, but Mrs. Schmidt stretched it quickly and held it straight. Karen forced herself to count the seconds of the three minutes she knew Mrs. Schmidt would hold it straight. Her bicep and elbow burned and stung even after Mrs. Schmidt let go.

“Karen, you are not cooperating with me, today,” Mrs. Schmidt said, her voice hard, again. “I cannot do any more for you with that exercise. Get onto all fours so I can hyperextend your elbow and arrange your fingers from another angle. They look very curled, today. Hurry up! I cannot understand what takes you so long. You are wasting my time. I cannot wait until you are ready. This session is taking too long. I am due for my coffee and cigarette, and I cannot have them until we finish your program. Hurry up, or I’ll report you to Dr. Lambert for not cooperating with your prescribed treatment.”

Kitten stayed quiet and thought about Mrs. Schmidt’s background, as she eased herself into position. Mrs. Schmidt immediately slammed a sandbag onto her left wrist and held it down while forcing the elbow to bend the wrong way and prying the bent fingers straight.

“Ow! Don’t you care that you’re hurting me?” Karen moaned.

“Karen, you must accept your limitations. You must accept that I am being a little rough because your treatment must be like this. If it is not, then it will not be effective. This is the only way your arm and wrist will straighten out. This is the only way to improve their function. You have to toughen up. My job is to help you get tough, even if it hurts a little.”

Karen twisted her neck to look up at Mrs. Schmidt, but found herself stared down by the PT’s angry gaze. She felt rage touch her as the therapist ran her eyes up and down Kitten’s body, glaring particularly hard at the disabled left side. Karen looked toward Mrs. DeLuca, who was working with another student on the other side of the room, but who refused to meet her eyes. The student looked back with sympathy as Mrs. DeLuca gently worked on her, but as a disabled child, she was afraid to speak up. Kitten did not want to cry, so she said nothing.

“I have created this stretching program especially for you, my dear. I have created it based on my own professional experience. I know what is best for you. I must execute these exercises exactly right, regardless of any little discomfort they may give you or me. This is not the time for feelings or compassion. Our bodies are machines, and we must treat them as such. Do you think I enjoy sitting on this mat? No! But I do it to help you.”

Karen tried not to resist. Resistance increased the pain. Suddenly the three minutes were up. Mrs. Schmidt released her arm and wrist as abruptly as she had taken them.

“Now for your last and final exercise, Karen! We are going to stretch your left heel cord.”

Kitten could not stop herself from wincing. This was always the most painful treatment. She rolled from the all fours position and sat on the mat with her legs straight in front of her. Mrs. Schmidt looked deeply into her eyes as she reached for Karen’s left knee and pushed it hard into the mat. Under Mrs. Schmidt’s pressure, the knee bent the wrong way and immediately throbbed with pain. Mrs. Schmidt smiled as she gripped Kitten’s toes with her other hand.

Karen tried to relax, but the coming agony terrified her, and her muscles involuntarily tightened. Mrs. Schmidt squeezed her toes together, so that they hurt. She pulled the toes toward Kitten’s knee, still looking into her eyes with a darkness.. Karen could not look away, in spite of the pain. She felt tears sting and flow down her cheeks. Mrs. Schmidt squeezed and stretched once, then let the toes move back to their normal position. Karen sniffed to keep herself from whimpering. Mrs. Schmidt squeezed and stretched, again, even harder, and the pain increased. The treatment consisted of five stretches, each one more painful than the last.

“Karen, you must try harder not to resist me,” Mrs. Schmidt said, as she released Kitten’s foot and handed her a tissue. “Now dry your tears and go back to class.”

Karen’s eyes stopped tearing. She wiped them and blew her nose. Looking around, she saw that the therapy assistant and the other child were staring at her, their faces full of shock. Mrs. Schmidt was smiling in a relaxed, satisfied way. She looked happier than she had since Kitten had entered the room.

“Why do you smile, Mrs. Schmidt?” Karen asked.

“I smile because I know how much this is going to help you! I know because I know what is necessary to make this therapy work. I know because I’m not afraid to challenge you.”

Mrs. Schmidt struggled to her feet and flung open the hallway door. “Your session is over, young lady. You can leave, now. It is time for my cigarette break. Try to have a better attitude, next time.”

“Thank you, Mrs. Schmidt. You have a very nice day, too!” Kitten replied.

Coming Soon: Another Interview

I am working on my notes for an upcoming interview, so today I am not posting a scene from The Healing Horse. Maybe I will post about the interview after it happens.

The Healing Horse, Ch. 19, Scene 6: Mrs. Schmidt and Her Evil Philosophy

image of lemon hard candies

The story grows darker, yet, in this scene. We learn some of the ideas that can lead adults, who should be kind to children, to hurt them, instead. (Image by Tiia Monto, CC BY-SA 4.0, via Wikimedia Commons.)

Scene 6: Mrs. Schmidt and Her Evil Philosophy

Karen recalled how, one day she had approached the PT room a little early for her session. She knew the physical therapy was good for her, but she felt tired and chilled whenever she entered the room. It had a dark energy that affected her mood and made her wonder why her normally happy spirit had become sad.

Today, the door was open just enough for her to peek in and overhear a conversation between Mrs. Schmidt and the physical therapy assistant, Mrs. DeLuca. It was open just enough for Karen to learn the secret behind Mrs. Schmidt’s cruelty.

Mrs. Schmidt wore her usual royal blue dress under a white lab coat. She was too heavy to wear the conventional therapy uniform of white pants and a matching short-sleeved top with a Physical Therapy badge sewn to the left shoulder. She reeked of cigarettes, and Karen almost choked when she came near her. Mrs. Schmidt constantly sucked on lemon drops to cover the odor of her breath. At five-feet-ten-inches, she towered over most women.

Slender Mrs. DeLuca stood five-feet-three-inches tall, a full head shorter than Mrs. Schmidt. She wore her deep red hair in a bob, and was never without small pearl earrings and a matching necklace. She always dressed in pants suits with pretty blouses under her white coat.

“Annette!” Mrs. Schmidt squawked. “Hurry up! You know we have to get the paperwork done before our clients come in.”

Karen heard Mrs. DeLuca mutter, “Who does she think she is? I’m not deaf, and I’m already working on the paperwork. If I didn’t need the money, I’d quit this job.”

Mrs. Schmidt’s voice came back, loud and domineering, “Annette, don’t talk about me as if I were not here. Have some respect for your elders! I am the Physical Therapist, and you are my assistant, so you will obey me! As for these children you incessantly worry about, for your information, you have the upper hand over them. You can’t let your patients manipulate you. You don’t understand how much people cater to them, already. They’ll become complete invalids if we don’t push and exert pressure. That is what they need. They don’t need more coddling. I know firsthand.

“In Vienna, I spent years twisting the muscles of these hothouse flowers with what you call patience, and without really helping them. But, I grew up under the Third Reich, so I know what power can accomplish. We must use our power. Patients don’t understand when they have to be pushed. They don’t understand why we apply pressure to their joints and connective tissues. It is painful for them, but they must accept total submission to us as the correct response, if they are to improve.

“For example, that little Jewish Princess, Karen, in her pretty little A-line dresses with puff sleeves, needs to be kept in line. She’s a real troublemaker because she wants to overcome her handicaps. She thinks she can lead an independent life doing the same things normal children do. People think I am ruthless, but I’m trying to prepare her for the real world. She doesn’t realize she is not going to have the opportunities others have. We must also watch Karen’s interactions with Tammy. We don’t want them giving each other too much hope. If those two get together, then watch out!

“We earn a living because parents believe we can make all the hurt and pain go away. They think we can fix their children’s disabilities, but we cannot! Neither can we foresee the future for their little cripple souls. We offer false hope, but the true hope we can give these children is to teach them to submit to authority and to endure pain, for this is how their lives will be!”

Kitten stifled a gasp. Now, she understood why Mrs. Schmidt treated her the way she did. Mrs. Schmidt was one of those adults who thought they had to hurt children to prepare them for life. Karen tried to center herself. She would not allow herself to become upset because someone else was cynical and twisted. She knocked and pushed open the door.

The Healing Horse, Ch. 19, Scene 5: Flashback to The Physical Therapy Room

This scene introduced Mrs. Helga Schmidt, one of the darker characters in The Healing Horse, one who challenges little Karen to be her best in the face of adversity and discrimination.

Happy Holidays! And things will look up for Kitten, soon!

(Painting by Vincent van Gogh, Public domain, via Wikimedia Commons)

Scene 5: Flashback to The Physical Therapy Room

The motion of the bus put Karen’s mind into a hypnotic state. With each mile Mr. Hinton drove, the further back in time she traveled. She thought of the doctors and of her coming clinic. Then she recalled the one time that an adult at school had hurt her, physically. It had been four years before. She also remembered that no matter what happened, she never sniveled or whined.

A large picture window and a pair of French doors faced the playground. Their dirty glass let a little natural light into the Physical Therapy room. Two desks, one for the therapist and one for her assistant, stood close to the wall by the window. A filing cabinet stood in the corner next to the desks, by two folding tables covered with office supplies, tools and trash.

On the south wall, a framed print of Van Gogh’s Still Life: Vase with Pink Roses provided the only beauty in the room. Karen knew the painting from when Mama had taken her to a county art museum exhibit. Van Gogh had painted it during his final days in a mental asylum. The bright blossoms and wavy green background were his way of saying that life was getting better.
She understood how the painting symbolized much of her life, but the clutter, gloom and heavy dust of the PT room overpowered its beauty.

In the physical therapy room, she met with Mrs. Helga Schmidt, the school’s physical therapist. Mrs. Schmidt was a heavy-set, older woman with tinted reddish hair. Karen could see gray coming through the dye. When Mrs. Schmidt spoke, her voice was harsh, and Karen heard a heavy German accent. Kitten picked it up because of her Jewish heritage. Mama Katie had explained the strong similarity between the German and Yiddish languages.

The Healing Horse, Ch. 19, Scene 4: Hello to Mr. Hinton

In this scene, little Karen continues mulling over her situation before drifting into the dark memories that begin in next scene, as we find out more about exactly why she is afraid of school. (Image by Alan Turkus from Hopewell, New Jersey, USA, CC BY 2.0, via Wikimedia Commons. Cropped for this post.)

Scene 4: Hello to Mr. Hinton

The bus driver stopped close to the curb and Karen slid from Pegasus’ back into the bus.

She turned her little torso and waved good-bye to her stallion.

“See you later, boy,” she said.

Before walking to her seat, Karen greeted the driver with a quick hug. She liked Mr. Hinton, and she knew that he liked her and all the other disabled students. He was one of the few adults who genuinely cared about handicapped children. She wished the experts cared as much as the bus driver did.

Karen took her usual seat and buckled herself in with the black web seat belt. As the bus moved away from her new home, she waved good-bye through the window. Mama had joined Pegasus at the curb and waved back. Mama was crying.

Karen pursed her lips and thought, Every new semester is a fresh start. Mama and Pegasus are right. They speak with the voice of divine wisdom. I need to set an example and not think only of myself, and I need to keep trying until I succeed on my own. Thank heavens for both of them. I would not feel brave enough to face school, now, if I did not know that they will be waiting for me when I get home.