Category Archives: Disabilities

Disabilitiesby Daniel Vance
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TN Mom Fighting Tooth and Nail

daniel vance 120According to the National Institutes of Health, autism spectrum disorder (ASD) is a “range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.”

Sandra Domenech became aware of this column through a friend who read it in a Florida weekly. She said she and her 13-year-old son with ASD recently moved out of Florida due to unkind treatment of him by school officials, police, and students. Domenech has a disability herself arising from severe arthritis caused in large measure by working at her former lawn care business. She has been separated from her husband since 2011. He’s deaf.

She said of her son, “He was born prematurely and at birth his heart stopped. He spent the first month of his life in a hospital. He didn’t walk until about two and a half and didn’t talk until 6. He’s not like most other kids.” Like many children with ASD, her son has a sensory disorder in which loud noises and physical touch can lead to emotional meltdowns.

Domenech said children in Florida had bullied her son. And in February 2014, she said school aides there allowed him to walk alone around the school campus and, when teachers and students blocked his entrance into a school cafeteria, her son had an ASD-related meltdown. A school resource officer transported him to a behavioral facility that didn’t have experience serving children with autism that had special needs like her son. (Her son requires occupational, physical, and speech therapy.) She tried getting him out. Eventually, a judge ruled in favor of Domenech, who, along with her son, recently moved to Tennessee to shield him from more trouble.

She said, “I’m a strong person and have tried hanging on. I can’t believe they did what they did (in Florida). It’s put a strain on my son. Where we are in Tennessee, he has already been beaten up. When I asked why he didn’t stand up for himself, he said he didn’t want to get in trouble (and end up being taken away like in Florida).”

As for advising parents of children with autism, she said, “Make sure there’s a(n) (appropriate) class for your child at school and make sure the people in that class are qualified and certified to deal with your child’s disability. As for me, I will fight for my kid until down to my last tooth and nail.”

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Columnist Seeking to Break Stereotypes

daniel vance 120If you’re brand new here, you probably have been wondering what’s going on. Instead of disability-related issues, ax-grinding, or political agenda-driving, this newspaper column just features real people with disabilities and their lives.

I say “real” because the mainstream media, in general, have a tendency to portray most everyone with a disability they feature as victims, objects of pity or superheroes, as if having a disability was the worst thing anyone could have and therefore needed an emotional or Rocky Balboa-like story line.

The media portray people with disabilities as victims or objects of pity when they repeatedly say a person “suffers” from a disability or that another is “confined” to a wheelchair, for instance. “Suffer” and “confined” are almost always the reporter’s words and not those of the person featured. As for the former, yes, some people do physically suffer, but many people with disabilities don’t and many view their disability as an asset.

In 2008, I featured Olympian Bruce Jenner (he was Bruce back then), who said about his learning disability, “If I had been an average student or reader, I wouldn’t have needed sports. As time went on, there was always this little dyslexic kid in the back of my head who would try to outwork the next guy. It was part of the process of the makeup of me. I believe I wouldn’t have won gold in the Olympics if not for being dyslexic.”

Also, do wheelchair users really feel “confined” to wheelchairs? Most don’t. Their wheelchair offers mobility and freedom. In truth, most people using a wheelchair feel “confined” when their wheelchair isn’t around.

In terms of superheroes, you often see reporters use words like “inspirational” or “courageous” to describe a person with a disability, yet many I know prefer being viewed as “regular” people and don’t much like those adjectives.

I want my readers to acquire a realistic feel for different people with disabilities and ultimately that must involve breaking stereotypes. People with disabilities aren’t a homogeneous group. The disability “community” has never been unified, but is politically conservative and liberal, rich and poor, old and young, married and not, Dallas Cowboys fans and not. People with disabilities aren’t all alike.

It’s these media-generated stereotypes that often build relational walls between people with disabilities and everyone else, which adds yet another needless layer of inaccessibility for a person with a disability to navigate. That’s something we all don’t need.

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Safi Creates App for Managing Finances

daniel vance 120I’ve occasionally looked outside the United States for people with disabilities to feature, including people from Canada, Great Britain, Africa, and Australia, with the latter two involving email interviews. This week was a first. I feature Paul Safi, 20, a Carleton University psychology major from Ottawa, Canada, who was raised by Lebanese-born parents in the United Arab Emirates.

In a telephone interview, Safi said, “I am legally blind from a visual impairment and genetic condition called retinitus pigmentosa. At night, for example, my central vision isn’t good at all. My night peripheral vision is better but not nearly as good as that of the average person.”

He first noticed vision challenges in middle school after dropping school items on the floor and being unable to easily find them. He also sometimes accidentally knocked books off tables, for example, because of being unable to see well.

He said, “The whole idea of inclusivity in education was unfamiliar to me in (the United Arab Emirates). Then a representative from Carleton University came to my high school college fair. I did some reading about the college and learned it was accommodating toward people with learning disabilities, visual impairments, and physical disabilities. So I thought this was a new hope for me in order to be independent. When I was 17 and graduating from high school, my parents were concerned about me being on my own. They preferred I stay home and go to a local university. But I made it clear that if I was going to learn to be independent, I should do it at a young age. So I decided to live on campus at Carleton.”

Safi said his college has an underground tunnel system that connects buildings and shields students from Canadian winters. He sometimes goes without his white cane because of being so familiar with the college.

His college education has paid off. Safi has become CEO of ReAble (reable.tech), an emerging technology business building smartphone apps and tools for people with special needs. Its first app, the ReAble Wallet, allows people with Down syndrome, autism, and others with intellectual disabilities to independently manage personal finances and make transactions while keeping parents or guardians in the loop. ReAble Wallet also teaches basic, real-world, financial literacy concepts.

He said, “About 200 million people around the world aren’t being served by the current financial system. Our technology could also be used by people who are illiterate.”

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Raymer Searching for a Kidney Donor (Part II)

daniel vance 120Last column, you learned about 48-year-old Karen Raymer, of Hidden Valley Lake, California, who for the last five years has been searching for a kidney donor. She first discovered having polycystic kidney disease at 25, had to quit working because of intense back pain, and in 2009 doctors removed her kidneys. She promptly began three-hour, thrice-weekly dialysis treatments.

Raymer said her best shot at receiving a kidney arose from a relationship she began about ten years ago with a Kenyan named Boaz visiting America for an education, who claimed God had told him that he (Boaz) was going to give Raymer one of his kidneys. She had met him through her parents at their church.

In a telephone interview, Raymer said, “Finally, this July, my friend (Boaz) said it was time for him to come to America to get the (kidney donor) blood work done. (He had already passed the questionnaire step.) We flew him here and took him to his blood draws. We flew Boaz back home to Kenya and then had to bring him back after finding out (much later) he was a blood match and they needed more testing.”

Doctors did more blood work, x-rayed Boaz’s chest, and performed MRIs, a psychological evaluation, and kidney tests. He passed everything. Doctors scheduled surgery for October 6, 2016. Three days before, they canceled surgery after learning Boaz carried a sickle cell trait, something common among Africans. He did not have full-blown sickle cell anemia, but going through with surgery with sickle cell trait meant he could have some complications.

“So with all the tests Boaz has gone through, it would be difficult for him to go through all that again,” Raymer said. “He still feels it’s his goal to give me a kidney.”

With Boaz as a donor, Raymer would need to find a new hospital willing to allow the operation. Boaz, 47, already is old for such a transplant, using an African hospital is out of the question, and questions exist about how his medical bills would get paid. “Besides, Boaz has a wife and four children, and runs a worldwide Christian organization,” said Raymer. “For him to be away that long (for an operation) would be taxing.”

Besides learning to live with such emotional ups and downs, Raymer said people waiting for a kidney donation should stay on their diet and “keep as much of a normal life as you can.”

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Raymer Seeking a Kidney Transplant

daniel vance 120All the little boy wanted for Christmas was his two front teeth. Karen Raymer of Hidden Valley Lake, California, would like just one kidney this holiday season. I initially featured her in 2012 and recently telephoned to learn of her progress. Her response moved me to dedicate the next two columns to her and to the plight of other Americans seeking a kidney transplant.

To refresh your memory: Raymer, 48, discovered she had polycystic kidney disease at age 25. Ten years later, she quit working because severe back pain had made driving to work nearly impossible. By 2009, her kidneys were swollen and uncomfortably pinching other internal organs.

“It was like being pregnant all the time,” she said four years ago. “My kidney function was deteriorating and I couldn’t do hardly anything with my children. After walking down the street to get the mail, I’d have to have my husband come pick me up because I was (physically) wiped out.” Doctors had to remove both swollen kidneys. They weighed 10 pounds each.

In addition, a surgeon during the operation nicked a leg nerve, which created numbness, which caused her to stumble and badly damage a knee, causing arthritis in the knee. After starting dialysis treatment, she fought off congestive heart failure.

Of her lifestyle today, she said, “I go to dialysis for three hours, three times a week. I’m supposed to have only 32 ounces of fluid daily. Soup or ice cream counts as fluid. I can’t have much potassium because too much will kill me. I take binders when I eat to pull the phosphorus out of food.”

Raymer said her brother wants to donate a kidney but can’t because of a different genetic disease he has. She said, “I’ve had a couple people try donating. There’s an online questionnaire that can tell you if you’re a candidate for the next step. Others trying to donate have even made it through the blood work (step). I have a friend from Kenya. The first time we met 10 years ago, he said God was telling him that he (the friend) was going to give me one of his kidneys. Finally, this July, he said, ‘This is the time to get the blood work done and go through all the tests.’”

What Raymer emotionally experienced from then on illustrates the ups and downs kidney transplant seekers often face. You’ll have to read more next week.

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U.S. Military Helped Sgt. Gutierrez

daniel vance 120On June 18, 2006, Sgt. Joshua Gutierrez of the 4th Infantry Division out of Fort Hood, Texas, was on patrol near Osut, Iraq, searching for missing U.S. Soldiers.

“At first, we went into the city and did a peaceful door knock, asking the people there if they’d seen our personnel,” said Sgt. Gutierrez in a telephone interview from the Naval Medical Center San Diego.

Around midnight, in a Bradley Fighting Vehicle, Gutierrez unknowingly drove over a bomb, it exploded, and his Bradley caught fire. “I was unconscious about twenty seconds,” he said. “The guys in the cargo area got out. After I came to my senses, I tried getting out too, but my leg was already pretty much amputated. There was so much going on. My gunner pulled me out, and they got me away before the ammo and fuel blew (everything) up.”

Doctors completed the below-the-knee amputation of his right leg, he had a mild traumatic brain injury, and he had three broken bones in his left leg. In succession, he needed medical care in Iraq, Germany, Texas, and San Diego.

He spoke highly of the military support received. Three weeks in, military peers with similar injuries visited to talk over his situation and help him heal the emotional scars. “And at first I didn’t want to go to a support group,” he said. “Then I went willingly. It was helpful and allowed me to express how I felt about what I had gone through and to relate to others, because I wasn’t the only one.”

After about three months, he learned to ignore his occasional phantom leg pain. Presently at Naval Medical Center San Diego, Gutierrez said, “Up until now I can’t say there has been a hard part. [The military] has been so good to me. There’s so much for me to do here and they have so many programs and support groups.”

Remembering the peers helping him initially, Gutierrez signed up to be a peer counselor himself. After taking classes and learning listening skills, to date he has helped a soldier, three marines, and an airman. Also, he can do things now he once thought impossible: ski, surf, hike, and run.

“You won’t hear none of that (in the news media),” he said. “You only hear bad things. You won’t hear how we’re taking care of our military.”

[Be sure to remember disabled military vets this Christmas season. This column first ran February 2008. Sponsored by Blue Valley Sod.]

 

AZ Man Coming to Grips with Disorder

daniel vance 120Our featured person this week wanted to be known as “Oliver” and his full identity hidden because of possible repercussions. He is in his 20s and lives somewhere in Arizona. Oliver was born with a form of spinal muscular atrophy, which the National Institutes of Health defines as a genetic disorder affecting control of muscle movement. It leads to “weakness and wasting of muscles used for activities such as crawling, walking, sitting up, and controlling head movement.”

Said Oliver, “I get weaker as I age. I need help now getting dressed and bathing and going to the bathroom. For the last six years, I’ve used a power wheelchair. Before that, I had a manual wheelchair (that people pushed me around in) and a walker. My biggest challenge is accepting my diagnosis and coming to terms with the progression of the disease and the loss of my abilities as time goes on. Sometimes, I get depressed.”

Oliver said he had a difficult time emotionally getting through a private school when younger. For example, one of his teachers, who was also the school principal, absolutely refused to accommodate Oliver by moving a classroom from an inaccessible area to one more accessible, which forced a relative of Oliver’s to purchase an expensive “stair climber” so Oliver could stay at that particular school. Prior to that incident, all other teachers had accommodated Oliver.

On another occasion, the same teacher forced Oliver to stay behind in class while other students were allowed to attend a physical education event in another location blocks away. Oliver asked a different teacher and others why. They confronted the teacher, who said it was easier to leave “Oliver” behind because he used a manual wheelchair and classmates would have had to push him. No classmate had ever complained about pushing Oliver.

Finally, said Oliver, “A boy in another grade had a learning disability. He would stutter and draw out his sentences. One day, this same teacher, in front of the boy’s class, went so far as to do a (mock) impression of the boy talking. I was horrified.”

In advising teachers on how to treat children with disabilities, Oliver said, “If there’s something a student doesn’t understand, don’t make a big deal of it or punish him. Work with the child outside the classroom at a different time. Treat people with disabilities the same as anyone, but don’t be surprised if they need special help.”

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Missouri Advocate Fighting “Invisible” Disabilities

daniel vance 120Christy Smith of Florissant, Missouri, saw nine doctors over a three-year span beginning in 1991 before learning exactly why she had periodic, intense dizzy spells. Eventually, she became a “warrior” and advocate for people regarding her specific invisible disability and invisible disabilities in general.

In a telephone interview, 63-year-old Smith said, “My symptoms (in 1991 and now) were this huge dizziness. When it started, I thought I had an ear infection. You know how a (normal) person walks from point A to point B and can always make it to point B without even thinking about it? I couldn’t. I would make it to a different point other than B.”

When getting a diagnosis of Meniere’s disease, she was just as “confused” about the disease then as now, she said. The National Institutes of Health defines it as a “disorder of the inner ear that causes severe dizziness, ringing in the ears, hearing loss, and a feeling of fullness or congestion in the ear.” No cure exists. Like others with the disease, Smith even today will have overwhelming attacks of intense dizziness, which, in her case, occur about three times a week and range from five minutes to 24 hours each.

She said, “Recently, I was going to my bathroom and stopped because I felt unsteady. I held onto the sink for balance. Then it was like someone pulled the rug out from under me. I went down backwards and hit my head on the bedside table. It didn’t knock me out, but did give me a two-inch gash. My husband took me to the emergency room. It’s like a fog comes over me during these attacks and I really don’t know up from down or left from right.” Due to having Meniere’s disease, Smith chooses not to drive a car by herself.

Advising people recently diagnosed, she said, “Don’t think you’ll be cured right away because there is no cure. It’s an invisible illness. People at times think I’m imagining the dizziness, which in part is why I recently became a public speaker about invisible illnesses and Meniere’s disease.”

Smith, a fiction author, has been writing what will become a non-fiction book to help people cope with Meniere’s disease. She decided on becoming a warrior rather than a sufferer, she said. She credited her Christian faith with helping her get through life. She recommended Facebook support groups to help people cope with Meniere’s disease.

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Harvard Grad Had Different Life Planned

daniel vance 120The world seemed to come crashing down hard on June 20, 1993, for then 36-year-old “Bart” of Queens, New York. Before that day, he had earned college degrees from Dartmouth and Harvard, and was earning $135,000 a year in business. His wife was a New York psychologist.

But afterwards? “That day, I was talking on the phone to a colleague about future technologies,” said now 52-year-old Bart in a telephone interview. (His name has been changed.) “During the call, I had what felt similar to a panic attack and felt this rush of heat all over my body. By the time I had hung up, I was shaking. I was completely freaked out.”

At home, his psychologist wife simply had no explanation. By Monday, he was experiencing an amazing cognitive shift. The depression and anxiety he felt would last months. The next year, during a more severe bout, he was hospitalized and eventually underwent shock therapy.

He said, “In the next seven years, I would spend about two years total in a normal state, three years depressed, and eighteen months manic. I quit some good jobs I shouldn’t have quit because I didn’t have a plan for what to do next.”

His manic periods would last about nine months before ending in depression, he said. The depressive periods would last months or years. In May 2000, a psychiatrist diagnosed him with a form of bipolar disorder, which is a brain disorder causing unusual, severe shifts in activity levels, mood, energy, and the ability to complete everyday tasks.

He spent the year 2000 in depression and was becoming suicidal. From 2002-07, he began another “normal” stretch. “Now over the last three years, I have had some very bad days with depression,” he said. “I have also had fine days, but no manic days.”

Though his personal income fell to $8,000 last year, he still sees some bright spots. For one, his marriage of 27 years has held up well and he claims more empathy towards people with mental illness. He continues working at his job best he can and tells people with bipolar disorder to exercise, sleep regularly, eat well, and take their medication.

He said, “People think it will never happen to them. I had a whole different life planned. I always thought how lucky I’d been and couldn’t imagine wanting to trade places with anyone. It was quite the turnaround.”

[Mr. Vance is on vacation. This column first ran February 2010. Sponsored by Blue Valley Sod.]

 

Baseball Great Should be in the Hall

daniel vance 120At least once annually, I offer my best “pitch” for the late, rocket-armed, speedy William “Dummy” Hoy and for his induction into the National Baseball Hall of Fame in Cooperstown, New York. He hasn’t been chosen yet. Repeatedly passed over by the Hall of Fame, Hoy had the character and his resume has the credentials. His exclusion has been a blot on baseball.

After a record-setting major league career from 1888-1902, Hoy went on to become America’s greatest professional baseball player all-time with a disability. (People in his day used the moniker “Dummy” for all deaf players. It wasn’t a put-down.) What keeps him excluded from the Hall has been a complete mystery to many people with disabilities, who see him as a role model and their champion.

Hoy was one of 29 players to earn a paycheck in four different major leagues, playing for the Washington Nationals, Louisville Colonels, Chicago White Sox, and Cincinnati Reds. A center fielder, he played alongside Hall of Famers Honus Wagner, Charles Comiskey, and Connie Mack, and starred for the 1901 American League champion Chicago White Sox. The Cincinnati Reds inducted him into their Hall of Fame in 2003.

After the Cincinnati Reds chose him to throw out the first pitch in Game 3 of the 1961 World Series, he passed away just two months later at age 99 as the oldest former player in major league history. Most baseball historians credit him, in the least, with popularizing umpire hand signals for outs, balls, and strikes.

When ending his career with the Cincinnati Reds in 1902, he held major league records in center field games played, career put-outs, and chances, was second all-time (for all players) in walks, with 1,004, and was third in outfield double plays, with 72. He had nearly 600 steals, a .288 career batting average, 2,054 hits, and scored over 100 runs nine times. He blasted the second grand slam in American League history. In 1951, the American Athletic Association of the Deaf Hall of Fame chose him as its first inductee and in 2001 Gallaudet University renamed its baseball field after Hoy.

Many people with disabilities view William “Dummy” Hoy through the same lens as many African-Americans view Jackie Robinson—as a societal ground breaker and champion. For the record, Hoy retired from the major leagues with more at bats, games played, hits, runs scored, triples, walks, and steals than Hall of Famer Robinson.

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