Annabelle Jenkins started her work day by checking her email. She deleted almost every one as spam, or some over-zealous idiot text-screaming at her about things she had no control over. She loved the citizens of her state, but sometimes they got a little rowdy for her. After all, she wasn’t the governor. She was only an assistant in his office. She had no power. She didn’t know what they expected her to do about their concerns. If the governor wasn’t doing what they thought he should be doing, they should email him. That’s why his email address was public. She didn’t have the power or the time to do anything about their complaints, especially with the amount of paperwork the governor put on her desk every day. She had complaints of her own.
She got to the very last email in her inbox, and almost deleted it, too, until she read the word “Spina Bifida” in the title. Her five-year-old daughter Isabella had spina bifida. When Annabelle was pregnant, the doctors told her all the horrible things that would happen to her unborn child. She’d never walk. She’d be mentally retarded. She’d be incapable of a normal life. They had pushed her to abort and, with all the pressure and such a bad prognosis, she almost had. But she hadn’t, and it was the best decision of her life.
Her daughter had exceeded all expectations. She walked, did all of her own self-care except putting on her leg braces. They were working on that issue, and Isabella would enter kindergarten this year in a normal classroom. So much for that bad prognosis.Her girl had taken those words and tossed them in the garbage!
Annabelle opened the email, and what she found inside both saddened and excited her. Carissa was a young woman born with spina bifida, and it looked like she was passionate about making some real change. Now this, Annabelle could get behind. She re-read the email.
Dear Ms. Jenkins,
I am a young woman born in the ’90s with myelomeningocele spina bifida. I’m a friend of Betty Carter, who you worked with to start the Americans with Disabilities Act in the 1980s.
First of all, I would like to thank you for all the work you did back then to make it easier for those of us born in this generation to navigate the world. I’m sure the disabled before my generation did not have it as easy, so thank you. I don’t know if you’re disabled or not, but you sure had a hand in making my life less challenging than it might have been.
I wanted to talk about playing my part in disability rights. I believe it’s time for my generation to take over the torch and make what you did even stronger and better. I believe we can go further in protecting our rights as people, but I need some help. I want to make sure that doctors who are giving out a diagnosis of lifelong disability are required to tell the honest, full truth about the disability they are diagnosing. It is my belief that many babies are needlessly killed based on disability, when the prognosis for that particular child is simply untrue, due to lack of physician knowledge and education. It is my understanding that physicians are handing out a prognosis based on literature that was written as far back as the 1950s. Medical research has come too far to rely on those sources to predict accurate futures for these children.
Doctors are still handing out the same bleak prognosis that was handed to my parents when I was born, and it wasn’t true or accurate even then. Babies are losing their lives over false information. This isn’t a pro-life or pro-choice issue. This is a truth issue.
Doctors should be required to keep themselves up to date on the latest research and treatments these babies are receiving if there is any chance they’ll be handing out this type of diagnosis. They should be held to a higher standard of education and knowledge, starting with the textbooks they learn from in school and continuing on throughout their whole careers. No family should have to face the idea of aborting their child because of false information.
In fact, no parent should be offered an abortion based on a false prognosis. It should be illegal to offer an abortion before having all of the current medical statistics on hand and ready to show these mothers and fathers. I don’t believe in abortion at all, but abortion based on false evidence of disability is a whole other playing field. It’s wrong and unfair to both the parents and the babies. Parents deserve the truth, and these babies deserve it too. Please help me help them.
Sincerely,
Carissa Schultz
Annabelle Jenkins put her head down on her desk, almost in tears. This had happened to her and her baby, too. She almost lost her sweet girl, not because she wanted to abort, but because the picture painted for her had been so bleak that she thought she might have no other choice. She thought the only choice she had as a good mother was to let her child stop suffering. She was so glad she hadn’t had the strength to go through with the abortion. To see her daughter now, she saw no suffering. She saw a little girl conquering. She had to help Carissa.
She picked up the phone and called the only person she could think of, Connie Peterson. Connie was the leader of a statewide spina bifida parents’ support group. They met in chapters once a month to have a meal and discuss issues, and sometimes just to feel like normal parents. In a group of moms and dads facing the same things you faced every day, sometimes the stigma of raising a disabled child got pushed to the back burner. Her local chapter was Annabelle’s lifeline. If anyone could gather the numbers together to make this happen, it was Connie. Connie could get this done.
The phone rang three times before Connie picked up. “This is Connie Peterson. How can I help you?”
“Connie! Hey, this is Annabelle, out of the southeast Texas chapter. I got an email this morning that I think might interest you. A young woman with spina bifida has a fire lit under her butt and wants doctors to tell the truth about spina bifida and other birth defects. Imagine that! Doctors finally telling the truth. Can I forward you the email? If anyone can get enough heads together to help this girl out, it would be you.”
“Annabelle, you think too highly of me, but send the email on. I’ll take a look.”
“Thank you!” Annabelle said. “You’re the best.”
Connie laughed out loud. “I am the best. That’s why you called me, right?”
“You know it. Bye, Connie!”
Annabelle hung up the phone and forwarded the email, then emailed Carissa back, telling her what the plan was.