cerebral palsy

With Valentines Day approaching, thoughts turn to dating, falling in love and getting married.

Hollywood doesn’t often cast people with disabilities in romantic movies, but there are inter-ability couples like Barton and Megan Cutter who are living love stories.

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Barton has Cerebral Palsy (CP). Megan doesn’t. The Raleigh, N.C. couple gives a no-holds-barred account of their courtship, wedding, and nine-year marriage in their book “Ink in the Wheels: Stories to Make Love Roll.”

The Cutters are like many married couples in their 30s. They’re developing their careers, starting a business, finding a social circle, coping with the ups and downs of home ownership, and meshing the strong desire to have children with the disappointment of infertility.

But the memoir is unique for the layer of considerations that Barton’s disability adds to decision.

For example, the couple had to move from Tuscaloosa, Ala., where Megan had inherited her mother’s house, because that city was lacking in accessible public transportation. The move to Raleigh solved Barton’s transportation issues, but  housing-related costs almost tripled, devastating the Cutters budget until they made major adjustments.

In sharing the story, Barton says he hopes to empower people with disabilities to reach for greater personal and professional satisfaction and achieve greater independence.

Megan says she hopes to show that marriage can be very satisfying, even if your spouse has a disability.

“I get so much from Barton,” Megan said.  It was her husband, she said, who took the lead in re-branding their marketing and public relations business to one specializing in life coaching and creative expression, Cutters Edge Consulting.

Barton, who speaks with a thick accent because of the CP, said people he meets usually assume that Megan is his caregiver. Often he is asked how he got such an attractive personal assistant.

Barton just smiles broadly and answers, “She said yes.”

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Because getting married caused Barton to lose his Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) benefits, there have been times when the Cutters have had to economize and Megan has provided Barton’s direct personal care.

But the Cutters make sure Megan is treated as a wife, with equality, and gets time to attend to her own needs.

The couple met a decade ago over Valentines weekend at a martial arts seminar in Arizona.

Barton has long combined a meditation practice with budo taijutsu training, a discipline that requires acute concentration to make intentional, sweeping movements.

Megan’s friends encouraged her to try budo taijutsu as a diversion after a broken engagement followed closely by the death of her mother, who had multiple sclerosis.

Barton and Megan weren’t looking for love, but love blossomed through another shared interest – writing.

Barton was just completing a bachelor’s degree in creative writing at the University of Arizona. Megan had also majored in creative writing and was then working in corporate marketing in Alabama.

Barton emailed her a new poem every day, although the process was arduous. He pecks out letter by letter with a beak-like pointer strapped to his head.

Megan emailed him her writings, seeking literary critique.

“It was a dance of words that lasted several months,” Barton said.

Barton also summoned courage to begin phoning Megan. Because of the CP he was afraid his speech would not be clear enough for her to understand.

Before long, the couple was engaging in pillow talk on Barton’s accessible speakerphone that made his college roommate blush.

Barton and Megan were nicknamed “Gilligan and Mary Ann” by organizers of the next martial arts seminar they both attended. The couple went AWOL for more than a three-hour tour, during which Megan was spotted sitting on Barton’s lap in his wheelchair as he motored around the UA campus – too fast, as always – and doing sharp 360-degree turns to make her giggle.

When Megan talked to family and friends about her new boyfriend, she’d mention the most important things – they were both into martial arts and writing and he emailed her a poem a day.

She didn’t disclose his disability until Barton had popped the question – by placing a custom-made engagement ring by the  “Norton Anthology of Modern Poetry” and asking her to take the volume off his shelf.

Parents of the couple initially opposed the union.  It would be hard work for Megan to marry someone with a disability, they said. And forfeiting benefits might be foolhardy for Barton because a time might come when the couple could not self-fund his direct care.

Undaunted, the couple planned a beautiful wedding. The ceremony culminated with a big surprise: Barton – for the first time publicly – standing and escorting his new bride out of the church.

It was the first of many moments that signaled this love is the real deal.

Barton is handsome -- and a poet --but those things aren’t what wins the heart of a pretty girl, he said.

“Be humble, but confident,” Barton said. “Be patient and express yourself in a way that the other person will not be put off. That’s the important first step.”

Do you have a love story you'd like to share?  E-mail lucia@dnlakeshore.org

 

Thoughts on First Person Language

 As a child, I concluded that intriguing people had disabilities.  

There was the mysterious hero of “To Kill a Mockingbird” Boo Radley – who probably was on the autistic spectrum, or maybe was just a recluse. I cheered the transformations of Clara (Heidi) and Colin (The Secret Garden), kid-invalids whose health and dispositions improved with friendship, sunlight and fresh air. And who didn’t adore Corky in the TV series “Life Goes On”?

Written by Kym Reinstadler

Written by Kym Reinstadler

Thinking back, I marvel that I grew up knowing very few real people who had disabilities.

Friends in the neighborhood had a big brother with brain damage – the result of falling down a flight of stairs in a walker when he was a baby – but I never saw Bobby because he lived in an institution. There was a girl named Heather in my junior high who used a walker because she had cerebral palsy, but I never had her in any classes. There was Becky in my high school biology class who sat front and center because she was deaf and needed to read our teacher’s lips. Becky’s voice sounded unusual when she answered questions, but it wouldn’t occur to me to look down on a classmate who always gets the right answer.

What I’m saying is that I knew of a few people with disabilities, but I didn’t really know them.

Back then I probably would have characterized Boo Radley, Corky and Bobby as “retarded” or “Down Syndrome,” never imagining they might consider the label derogatory. Clara, Colin and Heather were all “invalids” in my frame of reference. Becky reads lips, so that makes her deaf, right?

It wasn’t until 1988 -- when the director of a Disability Network-type of agency made a presentation to reporters and editors at the California newspaper where I was writing -- that I was introduced to the concept of person-first language.

The concept is pretty basic:

Name the person first and the condition second. Say "people with disabilities" rather than "disabled people” to emphasize that they are, first and foremost, people.

I could see her point, especially when she said referring to Ray Charles as “the great blind musician” was a sentence structure that minimized his talent.

Who doesn’t know that Ray Charles was a great musician? Whether he was also blind or had vision to see through walls is an unrelated attribute.

So, I embraced person-first language as disability etiquette. It’s become second nature, but it’s also tiresome because it throws speed bumps in writing.

Here’s why: Adjectives come before nouns in normal English syntax. Describing a wheezing person as “asthmatic” has an economy of words that “the person who has asthma” lacks.

Following the same linguistic prescription, should the mechanic be called “the person who repairs automobiles” and the artist be called “the person who makes art”?

Plus, not all disability groups like person-first language, including the deaf and the blind.

Since I didn’t view disabilities as derogatory, I didn’t feel the concern for person-first language issue until my Dad’s final trip to a hospital emergency room.

Alzheimer’s Disease had pretty much drained Dad from his body by then. He’d had a stroke. It had been more than a year since he walked, talked or recognized family members.

As my Mom and I sat with Dad in the ER, one doctor at the end of his shift walked briskly by with another doctor coming on duty. As they passed our cubicle, the only word uttered was “aphasic.”

Hearing someone sum up his whole 78 years of being with a label that means “can’t speak” stung. So, I got madder than a hornet’s nest.

“What about all the things he could do when he was still himself?” I thought.

I knew my Dad was going to die, if not that day, one day soon.  I wanted to savor his humanity, not have him dehumanized.

Did I complain to the medical staff?

No.

I knew the first doctor was just quickly passing along the most essential piece of information that the second would need to provide care. The patient didn’t speak. Questions could be addressed to his wife and daughter.

Even in his last days, Dad was more than “aphasic” to me. My friends with bipolar disorder are more than their mood swings. I have a friend who is a great writer, teacher and father, which is more important than the fact that he’s blind. I have a good friend who uses a wheelchair, but I’d list a dozen things about her before I’d remember the chair because it seems completely incidental to her.

Now that I’m grown up and know real people with disabilities, I understand why person-first language is more than good manners.

It’s telling it how it is.

Where do you stand on person-first language? Why?