After the brutal clinic and eval, Karen turns to her friend, Tammy, for sympathy, but Tammy had an even worse experience at the hands of the experts. Nevertheless, they do not let this undermine their sense of self-worth.
(Image courtesy of The Accessible Icon Project, Public domain, via Wikimedia Commons)
Scene 9: Karen and Tammy Reflect on Their Human Value
The next day, Kitten rolled Tammy’s wheelchair into the bustling lunchroom and took a seat beside her. She felt subdued after her ordeal the previous afternoon, and she wanted to talk about it with someone her own age.
“Tammy, you’ll never guess where I was yesterday.”
Tammy answered by giggling, “Disneyland!”
“No! I spent the day in clinic and eval!”
“Oh, no!” Tammy groaned. Then she asked, “Could you please help feed me?”
In between taking bites for herself, Kitten helped Tammy eat and tried to think of a way of telling her about what had happened the day before.
After a few minutes, Tammy said, “Karen, I can tell something’s really bothering you. Could you tell me what it is? Is it the clinic and eval?”
Karen told Tammy about her fear during the morning, about the horrors of the clinic, about Mama rescuing her, about what she overheard in the ladies’ room, and about the terrible evaluation in the afternoon. She even said a little about visiting Pegasus, but she kept his talking a secret.
Tammy then revealed what happened during her own clinic.
“Kitten, these experts have no idea what it’s like to be disabled. They’ve been able to use their limbs all their lives to do exactly what they want, and they don’t have any sympathy for us.
“When I was in clinic, the day before yesterday, they stripped me naked, except for my braces and underwear, and then they locked my leg braces at the knee and tried to make me walk. Dr. Lambert made Mrs. Pinzetti stand behind me. She held me around my torso brace and pushed my feet forward with her feet. On the one hand, they insist that brain damage is permanent, but then they say this is going to make my brain repair itself. They know my knees won’t straighten out, and my legs can’t bear weight. Besides, I don’t have any control over them. They flail about when I’m upright, just like when I’m in my chair. I was terrified that, with my legs and feet flying around, Mrs. Pinzetti would drop me. I almost cried, but then I looked over at Mommy, and she was already crying!
“I was so upset, I started screaming and told them all off. I told Mrs. Pinzetti that I thought she was a cruel woman who enjoyed hurting children, and that was why she had become a PT. And I told Dr. Lambert that I knew he just wanted to collect fees for unnecessary surgeries. I really let them have it. Finally, Mommy made them put me back into my chair and took me home.
“They’re like a pack of wolves! They surround you. The alpha wolf chews off the best piece of meat for himself, and then the others tear you apart. Dr. Lambert is the leader with his MD and PhD. He uses his surgeries to cut off parts for himself. That’s how he makes money. And then the others take whatever’s left and divide it among themselves.
“I see how tired my mother is every morning, when she wakes me up. She spends forty minutes just putting on my braces. Then she dresses me, feeds me, cleans my teeth, and brushes my hair—all before she has time for her own cup of coffee. Did you know that my daddy abandoned my mother to raise me and Sandy when he found out I was paralyzed? With my father gone, I wonder who will take care of me if Mommy can’t. That’s what really worries me. I don’t want to kill my mother taking care of me, and then end up in an institution, anyway.
Karen touched Tammy’s shoulder in sympathy, as her friend’s feet began beating on her footrests. Tammy’s words had taken Karen out of her trance of negativity. They had reached into Karen’s heart and enlightened her.
“Tammy, my daddy isn’t with us, either. He died in a car crash when I was a baby, so my mother has carried the burden of raising me all alone. I don’t know which would be worse, to be abandoned or to lose your husband to death. People don’t understand how hard it is to raise a child alone, much less to raise a handicapped child alone. It hurts me, when I see Mama doing everything she does to help me with my learning disability and my physical needs. I try to make it easier for her by being good. She works too hard. She never has a moment’s rest. I can see it in her eyes.
“Last night, she had to help me with my bath. I was exhausted from the clinic and eval. She looked furious, and I asked if she were angry with me. Of course, she denied it, but I knew that if I were not disabled, then life would be much easier for her. Every morning, no matter how tired she is, she puts my hair into a ponytail, ties my shoes, zips my zippers, buttons my cuffs and makes me a full breakfast, so I’ll have the strength to get through the day. But at night, I overhear her crying on the phone when she talks to her friends from the PTA. She’s so frustrated and upset that she can’t make me better. Mama would give her right arm to make me well, again. She can’t get over her feeling of guilt for giving me the DPT shot. During the day, she’s always smiling and never mentions it, but I know inside she feels as if she committed a crime and that my condition is her fault.”
“Tammy, who you are, and your worth, have absolutely nothing to do with what you need. The experts don’t see you as a person, but I do. You don’t have to earn the right to exist.”
Tammy sat up straight in her chair. For a moment, her limbs became absolutely still as she took a long, slow breath. This was a moment of enlightenment, a moment of illumination, as she glowed with an inner light.
For a moment, they were both silent. Karen knew that the idea she had just voiced was the most important idea she would ever have. She and Tammy were humans with disabilities. Their needs did not define them or reduce their worth.
Original text ©2022 by Karen Lynn-Chlup. All rights reserved.
In the final scene of chapter 24, Karen gets a powerful insight into her purpose in life. After helping her Mama cook and clean up after dinner, thirteen-year-old Karen visits her spiritual mentor and begins to understand how far-reaching the consequences of her friendship with Tammy will be.
I combined these two scenes because they are so short, and because they add up to an important message that every child with a disability needs to hear: find your own wisdom, and do not expect so-called experts to understand that you are growing up. Many of them will pigeonhole you as a helpless child, even though you are not. They cannot see past their ableism.
Karen has had enough, and in this scene she tells off the whole room of experts.
In this part of the story, thirteen-year-old Karen undergoes a humiliating series of questions in front of her mother and a room full of adults. These are not questions people ask normal teenagers.