Monday, September 29, 2008

"The Woman Who Left This Gift Was Very Smart"

If more people in these United States were like the good and faithful congregants of the Union Hill United Methodist Church, there might have no need for the passing of the ADA.

The beautiful church, located in the village of Union Hill, New York - about a half hour from Rochester - was built over a hundred years ago.

Long before the American Disabilities Act took effect in 1990, members of the Union Hill United Methodist Church discussed the importance of making their building, which has stood at 1872 Ridge Road since the late 1800s, accessible to the handicapped.

Good for them. The purpose of the Americans with Disabilities Act was make the world more accommodating and accessible to people with disabling conditions.

The hope of the ADA was not just to compel people to make modifications based on the strict and exacting standards published by the national ACCESS board.

The hope was that people would start to look at the world through the perspective of making it accessible to all.

The hope was that people would be proactive and, on their own initiative, make the changes necessary to open their own corner of the world to everyone. Just like the people at the Union Hill United Methodist Church.

Of course, the folks at UMC have been a little slow on the uptake.

Church member Lynn MacConnell said over the past 40 years options have been considered, but with a congregation that totals only about 85 people, the financial burden of constructing an elevator or ramp was too much to bear.

I love small churches - I was married in one. And I know times are tough. But 40 years to build a ramp?

Moses was out in the wilderness with the Israelites for 40 years. LBJ was president 40 years ago. The Packers beat the Raiders in Super Bowl II forty years ago. That's a long time.

37 years into planning, the project seemed to be adrift.

In 2005, however, a gift dropped in from the heavens. Someone bequeathed $2,500 to the church with the stipulation that it be used to build a ramp for the elderly and people with disabilities.

But there was a catch. The church had three years to use the money, or they would lose it. For this church, that's some serious pressure. Game on.

"The woman who left this bequest was very smart," said MacConnell. "She knew she needed to put a timeline on it in order to get this project moving once and for all."

No kidding.

So far, the church has raised about $30k of $40k needed to build the ramp. By my calculations, they have until the end of the year. They hope people will call and donate but, if not, they hope to raise more at the annual Holiday Bazaar to be held October 17th and 18th.

Of course, I'm not sure what holiday they are celebrating. Other than Al Capone being convicted of tax evasion (10.17.31) and the opening of the Grand Ole Opry (10.18.25), I don't see a whole lot of holiday-material happening on those days.

But then I'm not from Union Hill, New York.

Friday, September 26, 2008

"You Know I Do."

About 10 years ago in the community of Littleton, Colorado, there was a student with disabilities who attended the local high school.

This young boy was an easy target. He was often ridiculed for his infirmities, mocked for his disabilities, and derided because he was different. He felt all alone.

One day, in a crowded area of school, the bullying was especially intense. Rachel Scott, a popular and pretty 17-year old student he barely knew, walked over to the confrontation and put herself between the victim and the many perpetrators.

"If you touch him again, you'll have to fight me first," she said.

And she meant it.

From that day on, the bullying stopped. People began to look at him more as a real person, and accept him as a friend.

And a young student with disabilities, who had been despondent, depressed and considering suicide, had a new outlook on everything. He credits Rachel with saving his life.

Rachel Scott once turned in an essay titled, "My Ethics, My Codes Of Life," where she wrote:

"I have been told repeatedly that I trust people too easily, but I find that when I put my faith and trust in people when others would not dare to, they almost never betray me... Truth and honesty is an investment you put in people; if you build enough trust in them, and show yourself to be honest, they will do the same in you."

Rachel Scott was the first person killed in the massacre at Columbine High School.

The gunmen - whose names should never be mentioned, ever - targeted Rachel because of her religious values. With a gun pointed right at her temple, one gunman asked her if she believed in God.

She looked at him and answered, "You know I do." They were her last words.

In their grief, her parents went through her old papers and scrap books. They found not only the essay quoted above, but also a very simple brown piece of paper.

When she was 13, Rachel drew an outline of her hands on the paper, and wrote "These hands belong to Rachel Joy Scott and will someday touch millions of people's hearts." Indeed.

Her father used her life and the inspiration he found in her writings and pictures to begin a program called Rachel's Challenge.

The purpose of the program is to make the world a better, kinder, and more accepting place.

The program challenges students to eliminate prejudice, to dream big by charting a course for your life, to choose your influences carefully, and to spread kindness and goodness in small but meaningful ways.

Rachel's Challenge has been presented in over 1,000 schools across the country and featured in national television shows and magazines.

Rachel Scott is revered by Christians all over the world as a martyr who was willing to die rather than denounce the God she loved.

A mere 20 minutes before she died, Rachel Scott was having a conversation with a teacher. She told the teacher, "I am going to be an impact on the world. "

And those words were the prophetic truth.

She concluded her essay with the following words:

"I am sure that my codes of life may be very different from yours, but how do you know that trust, compassion, and beauty will not make this world a better place to be in and this life a better one to live? My codes may seem like a fantasy that can never be reached, but test them for yourself, and see the kind of effect they have in the lives of people around you."

"You just may start a chain reaction."


Wednesday, September 24, 2008

"It's A Miracle He's Still Here Getting Shot Again."

I love Memphis.

I've only been to the city one time, a few years ago to run the Memphis Marathon, but I took a shine to the place.

I checked out the Peabody Hotel, one of Memphis' landmarks, famous for having ducks in the fountain in the hotel lobby.

I caught an NBA game at the Pyramid (before they opened their new arena), and have followed the Grizzlies ever since.

And a few hours after the marathon, I managed to drag my corpse around Graceland, the home of Elvis Presley.

(An aside: The last thing they show you on the tour of Graceland is Elvis' grave. After running a marathon earlier in the day - and spending the last hour on my feet learning about "The Jungle Room" and how many gold records Presley had - I was exhausted. I bent over, put my hands on my knees, and looked for a place to rest. Graceland personnel quickly rushed up to me, assuming that I was emotionally overcome at the thought of being at the King's final resting place).

I would recommend all of these places to you. But one thing I would suggest you skip on your trip to the land of the delta blues is the dice game on Polk Avenue in South Memphis.

I've never been there, but I'm guessing that it must be - as Jim Croce would say - the baddest part of town.

Charles McDonald and Terrence Moorehead were among several people rolling dice and gambling at 785 S. Polk last Friday night.

Tensions rose and tempers flared over the issue of money and McDonald and Moorehead got into a heated argument.

I guess you could say Terrence Moorehead won. He pulled out a gun and before the dust settled he had shot Mr. McDonald five times.

But one needn't be too complimentary of Mr. Moorehead's marksmanship: Charles McDonald is a paraplegic.

I've never studied these things, but I imagine "shooting the guy in a wheelchair" has to rank pretty high on the "Easiest Sub-Human Things To Do" list, right after "punching the blind guy in the face."

Amazingly, McDonald survived. Its incredible that a paraplegic could survive being shot - let alone being shot five times. McDonald, though in critical condition, was able to identify his attacker to police from his hospital bed.

Moorehead was then arrested and charged with attempted murder.

So, in addition to skipping the dice game on Polk, here's another piece of advice: Avoid backroom gambling with violent felons.

This won't be Moorehead's first rodeo; he was convicted of murder in 1991.

But this advice doesn't just extend to Mr. Moorehead; it applies to McDonald as well.

Between 1984 and 1992, our shooting victim McDonald was convicted of aggravated rape, robbery, assault and drug possession. His brother insists, however, that McDonald has cleaned up his act - illegal gambling with murderers notwithstanding.

How did Charles McDonald become disabled in the first place? Violence. His brother explains:

"He was shot in the back in front of Lemoyne Owen College about seven years ago," said Michael McDonald.

"It’s a miracle he’s still here getting shot again."


And that is your quote of the day.

Tuesday, September 23, 2008

"She Went Back And He Would Never Leave"

In the early morning hours of Friday, September 19, residents of Andover, Minnesota heard a terrible crash.

A woman, riding without a helmet and at a high rate of speed, lost control of her motorcycle and crashed on Tulip Street.

No one heard a scream.

A passerby eventually came to her aide. An ambulance was a called, but there was no reason to hold out hope.

Natasha Waalen was dead, leaving her 4-year old daughter without a mother.

Her co-workers were shocked and saddened by the news. Natasha Waalen worked at Achieve Services, a training and habilitation agency for adults with developmental disabilities.

According to their website, the services offered at Achieve included supported in-house employment, supported community employment, individualized training, personal and social support, behavior modification, nursing care, and transportation.

Natasha was a valued member of the staff and was described by many at being "good at everything." One mourner described her as follows:

Our deepest sympathy goes to Natasha's family. I met her about 2 yrs ago and she helped me tremedously! I learned a lot from her and (how) she treated my husband and my 2.5 yr old daughter- who loved her dearly! Natasha just had a way of "making it all better"!!

Tierza Langston, a friend, said, “She had an absolute heart of gold."

Her friends knew she loved to ride her motorcycle. But, yet, they had a hard time believing that she would be so reckless, at such a late hour, when she had so much to live for.

It turns out the police were thinking the exact same thing. Maybe there was a good reason that Natasha Waalen hadn't screamed.

Natasha's body was found just a few feet from the motorcycle. But they found no cuts, scrapes or scratches on her feet - odd for someone who had just died riding barefoot on a motorcycle.

She did have wounds on the back of each hand. They could have happened in a crash, but they were more consistent with what forensic pathologists consider "defensive wounds," that one might have as a result of a physical altercation.

And, perhaps, most bizarrely, the police found a leather strap "intertwined" around her legs and and arms.

Investigators could come up with only one reason why she would have such a strap bound around her: to keep her tethered to the motorcycle.

The Anoka, Minnesota police department had a murder case on their hands.

Investigators went to Natasha's home to talk to Ryan Boland, her long-term boyfriend and the father of the little girl. Despite the unseasonably warm weather, they found Mr. Boland to be wearing a long, bulky sweatshirt. Upon further inspection, they found scratches on his arms and shoulders.

The police found traces of blood in the garage. They also noticed that a section of the carpet in the home had been cut out, for no apparent reason.

A short time later, the section of carpet was found - covered with blood - in a dumpster half a mile away.

Boland has been arrested and charged with second-degree intentional murder and aiding and abetting second-degree murder.

Police believe Boland killed Waalen during an argument in their garage around 10:30 p.m. Thursday, then tried to stage the motorcycle accident a couple of hours later with the help of his brother, who was arrested over the weekend.

Initially, the Waalen family had a difficult time believing that the father of their granddaughter could be involved.

On Friday Jeff Waalen had said that he suspected that a man who had recently threatened to kill his daughter over a potential lawsuit might be the culprit, and that if investigators were after Natasha Waalen's boyfriend, "they're barking up the wrong tree."

But as the evidence - some of which has not been made public - began to mount, reality began to set in.

"It's hard to accept is about the only thing I can say," said Natasha Waalen's father, Jeff. "It would be easier for me to believe something else than thinking it was the guy she had known for 10 years."

She had indeed dated him on-and-off for 11 years, which means she knew full well that he had been convicted of assault in 1999. Apparently, she had been trying to get away from him for a long time.

“Horrible, it’s been a nightmare for her,” Waalen's mother Cindy Erickson said. “Many times she’d come to stay with me."

"A few times she went back, and he would never leave.”

Monday, September 22, 2008

"This is Just Completely Unacceptable"

Charlie Pride.

That's the one memory I have of riding a bus to school in the morning.

I had a (white) middle-aged bus driver who kept a glossy picture of the (black) country music star in her bus.

She'd get misty-eyed when someone asked her who he was; she loved him that much.

That stuck with me. But almost nothing else about riding the bus ever did.

From kindergarten through 3rd grade, my school was approximately 2 miles from my house. Surely my parents didn't take me every day. But I don't recall.

From 4th to 6th, my school was just up the street, and I would not only walk to school, but come home for lunch. I don't think they let you do that anymore.

In 7th and 8th grade, the school was way across town, so I certainly rode some then. I must have. But nothing really jumps out at me.

I don't have vivid memories either way. Unlike Charlie Brown, I had no little-redhead-girl I longed to see on on the bus each morning; no bullies that I feared seeing every day. Just taking my ride from my home to my school, and back. Thinking about it now, that's probably the way it should be.

There are many parents in Staten Island who wish their children with disabilities could trade places with me, I'm sure.

Due to budget cuts, the Department of Education in New York cut 200 special education bus routes, saving the tax payers $28 million.

Unfortunately, what that brought for families is children with disabilities who wake up every morning crying at the thought of getting on the bus.

The budget crimp forced the district to cram more students with disabilities into each bus - and mix students with ambulatory difficulties in with those with behavioral problems.

This requires the buses to leave earlier and arrive later - sometimes even after school has begun.

Patty DeLeo, said the bus picks up her son at 6:40 a.m. but doesn't arrive at school until almost 9 a.m., well after the school day has already started.

Her son is no doubt already exhausted by the time he reaches school. Not to mention the possibility that a young child may have to use the restroom at some point during a 2 1/2 hour morning commute.

Some parents get around the tension by driving their children to school. But for parents like Maria Maley - who herself is recovering from cancer and a series of heart attacks - driving is not an option. Her daughter Nicole gets on the bus at 3:00 when school lets out, and doesn't get home until 6:00.

Nicole is 11.


"There's no way an 11 year-old kid should be traveling two, three hours on a bus to get home," Ms. Maley said. "This is just completely unacceptable."

By the time she washes up and has something to eat, Nicole is ready to hit the sack.


A spokesperson for the bus companies blamed the increase in the number of students each driver was responsible for. She also cited the decision to place children with physical disabilities on the same bus as those with emotional disabilities as part of the problem.


Children in wheelchairs can take up to five minutes for each stop - as opposed to 1-3 minutes for "regular" stops.


A spokesperson for the Department of Education filed all of this under the category of 'mission accomplished. "


"We are providing bus service to eligible students and meeting the transportation requirements of every student with disabilities," said the spokeswoman, Margie Feinberg.


I suppose you are, Ms. Feinburg. Eventually.


She also noted that there had been fewer complaints this year. Other than, of course, the huge exposé in the Staten Island newspaper, and broadcast all over the world via the Internet.


Of course, it could be worse. They could live in Brooklyn.


In early September, a bus driver in Brooklyn had great difficulty delivering his load of two-dozen kindergartners and first graders home safely.


He arrived at school an hour late - a source of irritation for parents who live mere minutes from the school. He meandered throughout the borough, periodically stopping to read a map, and occasionally stopping to call someone until his phone eventually went dead.


At last the driver - sensing he was hopelessly lost - drove back to the school and dropped the children off at their initial departing point.


At 9:30 pm.


“She was crying, she was traumatized,” Ms. Koroma said of her daughter. Ms. Koroma said Victoria had told her that the driver had been “looking at a paper,” perhaps a map, that had “a lot of words.”


The police had a lot of words for the driver, starting with "You have the right to remain silent." Charges, however, were later dropped, because they felt he didn't mean to intentionally hurt or inflict stress on the children.


But none of those children want to get back on the bus, either.


In this country, we made a decision that school districts would be responsible for busing children to and from school.


If you are going to do it, you have to do it right.

Friday, September 19, 2008

Patches

I'm gonna let Clarence Carter take us into the weekend.

I thought about posting his version of "Back Door Santa." But it ain't Christmas time, and this is a family show.

From the Alabama School for the Blind, class of 1954. Enjoy.

Thursday, September 18, 2008

"The Infliction Of A Miserable, Degraded Life"

Sarah Palin and her husband Todd have a beautiful baby boy named Trig who was born with Down Syndrome. Most everybody knows this by now.

I wrote on this blog a few days ago about how I hoped that the presence of Trig in the national spotlight would lead to a serious discussion about the role of government in helping children with special needs.

This is not what I had in mind.

Nicholas Provenzo, founder of the Center for the Advancement of Capitalism, got the discussion started this way on his blog (arrogantly titled "The Rule of Reason"), just two days ago:

Like many, I am troubled by the implications of Alaska governor and Republican Vice Presidential candidate Sarah Palin's decision to knowingly give birth to a child disabled with Down syndrome. Given that Palin's decision is being celebrated in some quarters, it is crucial to reaffirm the morality of aborting a fetus diagnosed with Down syndrome (or by extension, any unborn fetus)—a freedom that anti-abortion advocates seek to deny.

A parent has a moral obligation to provide for his or her children until these children are equipped to provide for themselves. Because a person afflicted with Down syndrome is only capable of being marginally productive (if at all) and requires constant care and supervision, unless a parent enjoys the wealth to provide for the lifetime of assistance that their child will require, they are essentially stranding the cost of their child's life upon others.


Normally, I would take someone to task for using the word "afflicted." But the use of that word in this article was quite possibly the least offensive line to be found.

And he was just getting started.


Provenzo takes conservative writer George Will - a father of a child with special needs - to task over a column written three years ago. Will derided a proposed law in England that would ban abortions after 24 weeks, except in cases where the fetus is determined to have disabilities. In one case, an unborn child - likely viable at the 28-week stage - was aborted because the family found out that the child would likely have a cleft palate.

Mr. Will's son was born with Down Syndrome 36 years ago. In his 2005 column, Will retells the story of a woman who, upon learning that their unborn child had Down Syndrome, was shown "a really pitiful video first of people with Down syndrome who were very low tone and lethargic-looking and then proceeded to tell us that our child would never be able to read, write or count change."

Will adds, "Try telling that to Jon Will as he navigates Washington's subway system to use his season tickets to the Wizards basketball games and Nationals baseball games."

To Provensky, laws such as these more than just make sense; they are actually the moral thing to do and, besides, they save us lots of money.

He ridicules a conservative women's group for praising Palin's decision to give birth to a child with disabilities, and mocks those who say that we can actually learn a thing or two about life by having people with disabilities around us.


He links - positively, I might add - to an article written by Diana Hsieh, in which she expands on his argument:

(Christians) are not motivated by a soft heart. If they were, they would adamantly defend abortion as a moral means of freeing parents from the prospect of endless sacrifice to a retarded child. They would regard abortion as a moral way to prevent the infliction of a miserable, degraded life on the person that will emerge from the womb. Instead, they want to create more mentally defective and perpetually dependent children by outlawing abortion.

The people who worship retardation reject human reason as a value. They're as anti-man as the deep ecologists who regard mankind as a cancer on the earth.

Frankly, one wonders why such people don't lobotomize themselves, if retardation is such a boon to their fellow man.


Did anybody else notice the chill in the room? Or is it just me?

Looking at a person with a disability as someone with a "miserable, degraded life," is a sad perspective indeed.

And using people with disabilities' assumed lack of sufficient contribution to the Gross Domestic Product as justification for not wanting them around, is truly frightening. This line of thinking can be used to weed out a whole lot of people.

In fact, given the way life works, Ms. Hsieh and Mr. Provenzo are just one slip on the stairs, one stroke, or one drunk driver away from that so-called "miserable, degraded life" they so callously dismiss.

Let's hope - heaven forbid - that if those days should come calling for Hsieh and Provenzo, that those around them don't share their views.

Brrr.

Tuesday, September 16, 2008

Smile

My wife is on to me.

For several years, I used cunning, guile, sophistication and, when necessary, deceit, to make sure that my dental appointment was separate from hers.

Not just different times, mind you. On completely different days. I'm a busy man, and these things can't be helped.

My wife, you see, is organized. She believes in "family" trips to the dentist to save time and energy. So, when it is time for her check up, she hauls our kids along to have them examined as well. All 6 of them.

So you basically combine the pleasure of babysitting in an office lobby offering nothing but Time magazine with the joys of high-pitched drilling of the molars, and it makes for quite the afternoon.

I consider my ability to get out of these torture sessions the single greatest creative accomplishment of my life, short of convincing her to marry me.

But one year ago, after my checkup, I casually tried to capture my own date again, only to find out that she had already done it for me - at the same time as her and all of my children.

And thus, part of me died. But I was now able to be there for those magical moments when the dentist says, "We won't be able to fix all of your son's cavities in one visit." Fatherly pride.

But as unpleasant as it is for me to shepherd all of my kids to the dentist - and pay the corresponding bills - it falls well short of the difficulties faced by some parents of children with developmental disabilities.

Many times, parents of children with disabilities can face challenges on two fronts.

The first is brushing. Many children with mental retardation just do not like having their teeth brushed - at all. It is very unpleasant for them, and it is something that many never get used to. The tension the episode brings make multiple daily brushes problematic, and dental health suffers as a result.

The second front, believe it or not, can be from drooling. Many types of disabilities, from mental retardation to cerebral palsy, can make it difficult to control the saliva in one's mouth. People who are not able to remove saliva, and constantly have excess amounts of it their mouths, are at greater risk of developing gum disease.

Fortunately, two recent developments may bring comfort to families dealing with these problems.

Researchers at the Forsyth Institute in Boston have a created a light-emitting device that can help treat dental problems without requiring contact with the teeth. These "mini-light sabers" have shown to prevent, treat and control gum disease.

"The patient feels nothing when blue light is applied to the dental pocket -, the area between the teeth and the gums where dental plaque resides,” says researcher Nikos Soukos. “We think it will be particularly beneficial to those who don't like using a toothbrush.”

The device works in concert with a special type of mouthwash that is not harmful when swallowed.

Soukos believes the device will ultimately be more effective than mouthwash, since mouthwash cannot fully penetrate dental plaque and eliminate pathogenic species. He adds that bacteria can also become resistant to antiseptics in the mouthwash.

The second breakthrough addresses the problem of drooling.

Sciele Pharma, Inc., a pharmaceutical company, recently completed a clinical study on glycopyrrolate, a drug designed to combat drooling.

Those who took the drug drooled significantly less than those who took a placebo. The drug, though not for everybody, does appear to have the potential to help a lot of children.

The drug is intended to treat chronic moderate to severe drooling in children 3 to 18 with cerebral palsy, mental retardation, or any other neurological condition associated with drooling.

Then you get into the drug industry lingo...

Glycopyrrolate received orphan drug status from the FDA in 2006. Orphan drugs are designed to treat rare diseases, and they can be awarded market exclusivity for up to seven years if they are approved for sale.

I don't care if it is an orphan or not. If it works, let's get it to market.

Being able to fight plaque and tooth decay with a "light saber" and reduce gum disease by using medicine to stop drooling could make trips to the dentist much easier for families with kids with disabilities.


Say "Cheese."

Monday, September 15, 2008

Mother Of The Year, Part 17

The world, it would seem, needs more people like Catherine Semple.

The 36-year old lives in East Dunbartonshire, Scotland, a town to the northwest of Glasgow.

In 2002, Catherine received a horrible phone call, relaying the most tragic of news; her beloved sister had been killed, leaving her five children orphaned.

Catherine Semple loved her sister and adored her nieces and nephews. But Catherine herself was a mother of 6, with no father to help.

She didn't know if, in her modest home and with her limited budget, she could handle caring for 11 children. But rather than see her sister's family broken apart and sent to foster families throughout Scotland, Catherine stepped up.

Semple brought the children into her home, vowing that they, as a family, would face the world as one. Somehow, with God's help, they would persevere. And so they did.

But Catherine Semple was not done.

No, this good woman also held a spot in her heart for children with disabilities. She saw too many children with special needs who had no home, no hope for a placement, no opportunity to be shown the love and support that only a family could provide.

So despite having 11 children in her home, Catherine Semple opened the doors even wider.

This woman - praise be to her and all like her - brought five foster children with disabilities into her home, showing that true love knows no boundaries, true compassion no limits.

16 children - including many with disabilities! Surely goodness would follow her all the days of her life.

But some cold hearted bureaucrat in the Department of Revenue and Customs, however, didn't believe. He couldn't fathom how one woman, of such modest means, could open her life so widely to give 16 children a chance.

So one day, he knocked on her door to see for himself.

And what he found was Catherine Semple running back and forth, cooking meals, cleaning bathrooms, and doing her best - against steep odds - to help with the schoolwork.

Of her two children.

As in 14 less than the government had in their records for her; 14 less than she had been claiming. For four years.

I don't know if Catherine Semple even has a sister, let alone one who died in 2002, leaving five children orphaned. But one thing was obvious; those children - if they actually exist - weren't living with Aunt Cathy.

And those five foster kids with disabilities? Pure fantasy. They existed only in the computer of the government program that kept sending Catherine her nice monthly check.

I mean it's one thing to make up a lie about caring for your deceased sister's orphaned children. Very creative.

The "five foster kids with disabilities" also sells very well.

But who just triples the number of their own children?

She pleaded guilty to stealing £69,150 from "The Crown" by fraud. She was originally charged with stealing £94,173.66, but the government accepted a plea to the lesser amount.

I'm not sure why the government would accept a plea - other than to save themselves the embarassment of a trial. A court case - while giving Catherine Semple no chance at innocence - would likely have only brought more attention to the government program that allowed such fraud to occur for four years.

Friday, September 12, 2008

"I Will Prove Myself Deserving Of Life"

Back in the early 1980s, the best distance runner in the world was an American named Alberto Salazar. He won the New York City marathon three years in a row and was the 1982 winner of the Boston Marathon. He was - and remains - the most accomplished marathon runner in American history.

But in the 1980s, Salazar wasn't the most famous distance runner in the world. Neither were Geoff Smith of England, Robert de Castella of Australia, or Toshihiko Seko of Japan.

The most famous distance runner in the world was Canadian Terry Fox (pictured), a man who became known and loved around the world for the race he never finished.

Terry Fox was in a car accident in November 1976, resulting in minimal vehicle damage and a sore right knee. When the pain in the knee wouldn't pass, he sought medical attention, only to find out that the had far graver concerns than ligament damage.

Terry Fox had cancer, osteosarcoma. Consistent with medical protocol at the time, the doctors immediately amputated Terry's leg.

Three years later, wanting to help in the fight against cancer, Terry hatched the idea of running across Canada to raise money for cancer research.

The goal was to begin in Newfoundland by dipping his foot in the Atlantic and end in British Columbia, doing the same in the Pacific. He hoped to run an average of 26.2 miles per day - a marathon every single day, on one leg.

His run began on April 12, 1980 and, sadly, he was forced to abandon the run on September 1, 143 days later. The cancer had metastasized to his lungs and he was unable to continue. He had run through Newfoundland, Nova Scotia, Prince Edward Island, New Brunswick, Quebec and Ontario. He had covered 3,339 miles, or 23.3 miles per day.

Terry Fox died on June 27, 1981, at the age of 22. His funeral was broadcast on national television.

He also inspired another man, in a similar circumstance, to try and finish what Terry Fox could not.

Steve Fonyo turned 16 years old the week that Terry Fox passed away. Fonyo lost his leg at the age of 12, and he considered Fox one of the true heroes in his life.

Three years after Fox's death, Fonyo began a journey to try and complete the run that cancer had denied Terry Fox.

On March 31, 1984, Steve Fonyo embarked on the "Journey For Lives" marathon. On May 29, 1985, Fonyo made it all the way to British Columbia, raising $14 million for cancer research.

He had covered 4,924 miles in 424 days, an average of 12 miles per day. The beach in British Columbia where he ended is now named Steve Fonyo Beach. Steve Fonyo roads can be found in Saskatchewan and British Columbia.

But life has a funny way of twisting and turning, even down roads named after you.

Terry Fox remains one of Canada's most beloved heroes. Two made-for-television movies were filmed about his life.

Steve Fonyo, on the other hand, is headed to jail.

Fonyo has battled mental health problems and legal issues for the past several years. He has been convicted of firearms offenses, assault with a deadly weapon, fraud and theft.

Today he reports to jail, having pled out on two counts of driving without a license. It is the seventh time he has been convicted of this same offense.

The part-time airplance mechanic stated in court that he had taken a chance that he wouldn't get caught, and that he was ready to "suffer the consequences" of his actions.

Meanwhile, the annual Terry Fox Runs to raise money for cancer research are held in over 700 towns throughout Canada and in over 3,000 sites in 30 countries all over the world, across North America, Asia, the middle east, Africa and Europe.

Fonyo's sentence, by comparison, was announced in a blurb in the Timmins Daily Press in Ontario. He will serve 30 days in prison.

Before he died, Terry Fox famously said, "I remember promising myself that should I live, I would prove myself deserving of life. " Well said.

But Steve Fonyo did live. And despite being awarded the Order of Canada medal at the age of 20 - the youngest person ever to receive the award - his life has presented him challenges far beyond his brave run in 1984.

Thursday, September 11, 2008

Not The Triumph, But The Struggle

Moments before the finals of the 100m dash at the 1984 Olympic Games, Ben Johnson took his place in the starting blocks.

He was little known outside of his homeland of Canada, but this was his chance for glory.

There are three signature events that define the Summer Olympics. The marathon defines the greatest distance runner; the decathlon, the world's greatest athlete.

But the Olympic 100 meter dash determines the fastest man on the planet. He wanted it so badly; years of hard work had come down to this pending ten-second burst of energy.

But there was something he wanted more than the title of the World's Fastest Man. Something he could earn on the track that day that meant more to him than the gold medal.

He wanted to beat Carl Lewis.

He couldn't stand Lewis, and there was nothing Johnson wanted more than to be the man that stopped Lewis from achieving his dream of matching Jesse Owens' four gold medals from Berlin in 1932.

Johnson, starting in lane 4, came out of the blocks well. At 40 meters he was running neck and neck with American Sam Graddy, who was to his right in lane 5.

With 15 meters to go, he allowed himself a furtive look to his right to see if it was to be he or Graddy for the gold.

That's when he saw Lewis, running far ahead in 6, preparing to raise his arms in victory, in his first of four gold medal performances.

Johnson settled for bronze, and heartbreak. And he vowed on that day that it would never happen again.

His dreams of gold in 1988 were sidetracked in February of that year, when he hurt his hamstring. When he aggravated the injury again in May, his Olympic dream seemed lost, and desire to beat Lewis swept away.

Lewis, knowing of Johnson's disdain for him, brought out the needle. In August, just before the Olympics, Lewis beat Johnson again, and let him hear about it.

"The gold medal for the 100 meters is mine," Lewis said at the time. "I will never again lose to Johnson."

Oh, but he did.

In the finals of the Olympics in 1988, Ben Johnson shocked the world by not only winning gold, but by also shattering the world record. He destroyed Carl Lewis in the race and treasured every moment of making Lewis go to the podium and listen to "Oh, Canada!" instead of "The Star Spangled Banner."

But, as the world came to know, it was all a fraud. Johnson tested positive for steroids, and his gold medal was stripped 3 days later. He later admitted that he had been using steroids when he won the world championship in 1987, and that was stripped of him as well. His world record was removed from the books.

The desire for glory, fame and money had been too much, the temptation too great. He had cheated. He had broken with the Olympic ideal. He wasn't the first, and he will not be the last.

One of the main reasons for starting this blog is not just to discuss disability issues, but to point out that people with disabilities are, in so many ways, just like everybody else. They may have challenges others don't, but they are people first and foremost, and they have the same strengths and weaknesses as everyone else.

And there can be no clearer example than the news coming out of Beijing's Paralympics that, apparently, some competitors are following Ben Johnson's lead.

They are cheating their butts off.

How do disabled athletes cheat? Let me count the ways.

Take the case of Irish Paralympian Derek Malone. He's been kicked out of the Paralympian soccer tournament for athletes with cerebral palsy. The reason? No one believes he has cerebral palsy. He doesn't appear to have any symptoms of it, a fact that Malone attributes to his extensive exercise regime:


"Cerebral palsy has shown to be a very trainable condition but if you stop training for any length of time, the symptoms will return. There's no cure for cerebral palsy."


"I refuse to let a flawed process cast aspersions on the integrity of the achievements I have made," Malone said.



Those accomplishments include a 2004 bronze medal in the 800 meter run.


The Dutch soccer coach - after watching his team get hammered 12-1 by Russia - questioned how disabled the other team had been, saying he felt some of them were good enough to play professionally.


And outside of death penalty criminal cases, you don't often see people purposefully deflating their own IQ scores. One does not often hear someone at a cocktail reception lying about how they totally botched the Stanford-Binet.


But in 2000, the Spanish Paralympic basketball team fraudently lowered the IQ scores of its players on their way to a gold medal. It was later found out that 10 of the 12 players IQ scores were too high.


And, perhaps more amazingly, are some of things athletes with disabilities do to themselves physically to give them an edge in competition.


In 2000, 14 Paralympians tested positive for steroids; 10 were weightlifters. Athletes have also been known to raise their blood sugar levels, to increase stamina and energy. But those are the common ways - the ways non-disabled athletes also cheat.


Some disabled athletes who cheat are known as "boosters," people who look to get more out of their body by artificial means:

To do this they don't take drugs - instead, they injure themselves to trick their bodies into boosting performance.


Some of the ways that Paralympic athletes "boost'' include sitting on pins, thumb tacks or ball bearings, turning off their catheters - allowing fluid to build up inside the body - while some male athletes who go so far as to tie wire around their genital area.


No way in the world. I want to win as much as the next guy, but come on.


The next time I watch a wheelchair race, I'm going to have a hard time getting that visual out of my mind.


Cheating is always wrong, and these athletes should all be punished, if not expelled. They violated the Olympic creed which says, in part, "not the triumph, but the struggle." We can't have it.


But in a perverse way, it's nice to know that Paralympians want it just as badly as Olympians do.

Wednesday, September 10, 2008

"She Was Trying To Get Away From Home"

In late February of this year, a fire broke out in the Springer home in the small, southwestern Michigan town of Centreville.

I don't know a lot about fires, but I would imagine the worst time for a house fire to start would be in the middle of the night, when everyone is soundly sleeping. The newspapers are filled each year with stories of families overcome by fires that started at 3:00 am in homes without fire alarms.

But the Springer home fire started at 8:30 a.m., so all should have been well. The father, Tony, was at work. Two of the Springer daughters were at school. And the mother, Marsha, had just finished her housecleaning.

The old vaccuum she had been using began to smoke, eventually causing the home to go up in flames. Marsha was able to get out of the house safely, as firefighters were called to come put out the flames.

Tragically, however, the Springers' 16-year old daughter, Calista, perished in the fire.

How?

She wasn't sound asleep. She wasn't overcome by smoke so quickly that she was unable to escape. And she wasn't cornered or trapped by the flames, leaving no exit.

No, Calista Springer died in the fire for one reason only: she was chained to the bed.


Calista's parents told investigators they used a dog chain tied around the 16-year-old's waist to keep her in bed at night because her emotional problems and "special needs" made her prone to wander and leave the house.


According to the Springers, they normally used a "fabric tether" combined with an alarm to be less restrictive. But the alarm had - allegedly - broken three days earlier, apparently requiring the use of the heavy dog chain.

Police aren't buying it - and neither am I. They think they had used the chain for a long time. And saying "we usually use a tether" is a horrible defense.

Early reporting indicated that Children's Services had been to the house on numerous occasions, but there had been no formal findings, and no one had ever been removed.

There had been, however, earlier signs that there was trouble in the Springer home.

On Saturday, Christine Ganger said Calista sought refuge in her family's home in 2004. Calista had walked there with Ganger's younger sister, Katie, who was then a classmate of Calista.


"She seemed real nervous around people," said Ganger, 21. "She wasn't sociable at all. She said she was trying to get away from home."


The state of Michigan immediately began an investigation of Children's Services, as is normal protocol.


"We investigate every child death that occurs as the result of abuse or neglect, even if it's suspected" abuse, investigator Stacie Bladen said. "It's just to verify or determine whether or not the (Human Services) agency complied with law and policy handling the case prior to death."


The small, close knit community was devastated and angry.


"Something should have been done to help that girl a long time ago," said Christy Kirk, standing outside the shop on her break, taking the last few drags off a cigarette. "Why did it have to get to this point for there to be an investigation, for her situation to be taken seriously?"


Still, Kirk said, "at least she's in a better place now."

****

"It's been a week of darkness," said the Rev. David Peterson, speaking from the pulpit near a small picture of Calista and a handful of flower arrangements.


The village recently held a touching vigil in her honor, where her friends and relatives mourned her death.


Mr. and Mrs. Springer, in the meantime, face very serious criminal charges. Marsha Springer pleaded "no contest" to abuse and neglect charges. The father, Tony, appears as if he will fight on, trying to beat the rap.


In court yesterday, Springer pointed to 10-year old medical records showing that Calista would have problem with impulse control and that she was a danger to herself.


And, true to form, instead of blaming himself, he laid the blame squarely at the feet of Calista's disabilities.


"Her disabilities finally caught up with her," Springer said in a report submitted by his attorney Tuesday to St. Joseph County Probate Judge Thomas Shumaker.


"The parents could not protect her from everything."


No, the parents did not protect her from anything.

Tuesday, September 09, 2008

"She's Been Through The Emotions We've Been Through"

I did have a great time last week in Minnesota. I had the honor of being a delegate for John McCain at the Republican National Convention in St. Paul.

It was very interesting, watching how a political convention unfolds. It was educational to observe who got to speak and why, and what they were asked to talk about. It was designed to build to a crescendo each evening, culminating with the night's big television speech.

It's always been hard for me to sit still and listen to speeches for more than 30 minutes without wandering, both physically and mentally. But at the RNC, out of fear of losing my seat, I sat for 15 hours over the course of 4 days, listening to speeches.

That is hard enough for me at national professional conferences, when the presenter and the issue changes hourly.

At a national political convention, one hears speech after speech after speech for hour upon hour, day after day, ON THE SAME TOPIC.

Honestly - I'm for John McCain; that's why I drove all the way to Minnesota. I don't really need to hear why the CEO of Aunt Hazel's Cookies feels the same way I do.


And though I am a Republican, I am confident I can speak for Democrat delegates who went to Denver, when I say that if I hear the words, "And The Next President Of The United States!" one more time, I may begin to feel very poorly - even as I robotically stand and applaud.

But all of it was worth it to hear the - at least for this year - historic speeches of Mike Huckabee, Rudy Giuliani, and John McCain. But at the end, most of the talk was about the performance and speech of Alaska Governor Sarah Palin, the Vice Presidential nominee.

There has been an interesting reaction in the disability community to her speech. Most people know by now that she is the mother of a four-month old son, Trig, who has Down Syndrome. They also know that Sarah and Todd Palin knew beforehand that Trig would have special needs, and decided to give birth to him anyway.

And mere minutes into her acceptance speech, Governor Palin said these words:

And in April, my husband, Todd, and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical. That's how it is with us.


Our family has the same ups and downs as any other — the same challenges and the same joys. Sometimes even the greatest joys bring challenge. And children with special needs inspire a special love.


To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House.



Her decision to have the child, to present him to the world, and to include a commitment to children with disabilities in the speech, touched a chord with many.

"For the first time, we have a mom in a position like that who's been through the emotions we've been through," said Michelle McCarthy of Ainsworth, Iowa. One of her 8-year-old twins has Down syndrome.


But Palin did not address what shape that advocacy would take. She did not offer any specifics in her speech about what disability policies she could, or would, address as the vice president. That would have been nice, but I didn't hear it from her - or anyone else for that matter - during my time in St. Paul.


Many, though touched by her story, quite reasonably have questions. One theme that has emerged in some quarters - beyond the traditional Republican vs. Democrat arguments - is a question of whether Todd and Sarah Palin truly understand - yet - what it means to be a parent of a child with a disability.


In the Washington Post, novelist Ellen Crosby - the mother of a child with autism - questioned if The Palins actually know what is coming for them and Trig:


The parents of every special-needs child know that the Palins have a hard road ahead of them. The heartbreak of watching the isolation and loneliness Trig will face because he wants to be like other kids but isn't. The first time they find out he sits alone in the cafeteria and on the school bus. The realization that Trig understands why he doesn't get asked to the movies or birthday parties like other kids but doesn't know what he did wrong.


The Palins will come to understand with acute clarity that while the sky is the limit for their other children, for Trig the world will gradually become a smaller place. And it will be their life's work to make sure that world is safe and nurturing and fulfilling -- a place where strangers don't take advantage of him or abuse him when they can't be there to prevent it. They will be tested and angered and have their hearts broken. But the most challenging journey will be Trig's, as he struggles with the basic tasks most of us take for granted.


I am not a parent of a child with a disability, and I don't doubt that unknown challenges are around the bend. But the Palins have had a long time to think about this. I wouldn't want in any way to be dismissive of their stated commitment based on their newness to the issue.


And lastly, an interesting study came out today looking that the long-term health impact that having a child with a disability has on a family.


In the Journal of Health and Behavior, researchers studied the long-term health impact to parents who raise a child with a developmental disability.


The study found that the initial stress of caring for a child with special needs can take a toll on the health of the parents, but that over time the parents adapt to their increased responsibilities, and their health risks dissipate:


Having a child with a disability takes a toll on parents’ mental and physical health, yet new research suggests that, over time, parents learn to adapt to the challenges of caring for a disabled child. As these parents age, the study shows, their health more closely mirrors the health of parents with children who don’t have disabilities.


Usually, when disability is discussed in these presidential elections, it is almost always a negative: Thomas Eagleton dropped from the ticket in 1972 due to mental health issues, Michael Dukakis' wife battling addiction in 1988. Neither discussion furthered the cause, to say the least.


I think this year, through the gift of Trig Van Palin, we have a chance for a real national discussion on this topic. I sincerely hope that is the case - regardless of the outcome of the election.

Monday, September 08, 2008

The Last Of The Quake Victims

One of the enduring images of the Beijing Olympic Games occurred in the parade of nations during the opening ceremonies.

The flag-bearer for the Chinese Olympic team was Yao Ming, the 7' 6" center for the Houston Rockets. As moved as the crowd was by Yao, a national hero, they were more caught up with the little boy who was walking by his side.

Lin Hao, a 9-year old from Suchuan province, was a survivor of the devastating earthquake on May 12. Lin was a hero to all Chinese people because, after pulling himself out of the rubble, he went back and saved the lives of two of his classmates.

When asked why he did it, he responded that he had been elected hallroom monitor. He was a leader in his class, and that's what leaders do.

Outstanding.

Approximately 70,000 people died in the west-central Chinese province, in a quake measuring 7.9 on the Richter scale - approximately the same as the great San Francisco quake of 1906.

Over 400,000 people were injured, and 18,000 are still missing. There were also 532 children who were left orphans as a result of the catastrophe.

Many of them were taken in by grandparents or other family members. On August 23rd, however, the Chinese government announced there were still 88 orphaned children who had no one to take them in. The government called on Chinese citizens to consider adopting, giving a child a loving home.

Chinese law allows only couples over the age of 30 to adopt, and preference was given to families that lost children in the quake. Thousands of couples made inquiries, hoping to bring an orphaned child into their family, making their house a home.

But 17 days into this process, the number of children out of the 88 who have been adopted:

One.

Why?


"One reason for the slow response is that many of the orphans are handicapped," the newspaper said, citing local departments in charge of the adoptions.


It said prospective adoptive parents had "hesitated" after learning of the children's physical or other disabilities.


A big factor in this is China's "one-child" policy which strongly discourages Chinese families from having more than one child. With ingrained cultural preferences for having a son, the policy can lead to nefarious acts by families in rural areas who have an unwanted daughter, ranging from secret adoptions to, in rare instances, infanticide.


Imagine, given this cultural theme, what prospective adoptive parents would think when told the child they could adopt was a daughter (or even a son) with a developmental disability.


It is a profound statement that when you know that you can only have one child, almost no one is choosing one that has a disability.


And thus, 87 of 88 children are still looking for a home.


The irony of this news is that China is currently in the midst of the Paralympics, the Olympic Games for athletes with disabilities. China is putting its best foot forward to the world, hoping to show all that they are welcoming to people with disabilities.


China has assigned enormous publicity to the Paralympics in the state-run media — part of an attempt to reduce traditional discriminations in a country where the disabled are kept out of sight usually.


China's government won't allow these orphaned children to be adopted by foreign couples, despite interest from all over the world. And, apparently, no one in China will adopt them.


So they seem to be truly orphaned, which is a depressingly sad thought indeed.


If Lin Hao could risk his life to save his fellow students, surely there are 87 couples in the country of China - population 1.2 billion - who are willing to give love, support, and a home to a child with a disability.


If not, let them go to another country, to a family that will care for them.


Tuesday, September 02, 2008

In Minneapolis This Week

I am in Minneapolis serving as a delegate for John McCain at the Republican National Convention.

I thought about blogging the convention for C&O, but I never really wanted to do politics on this blog. Policy - yes. Politics, no.

It could be a light week for blogging, seeing how I'm valiantly serving my country by attending receptions and cheering for speeches.

Bravery personified.

I will include this one picture from yesterday's events, when Cindy McCain and Laura Bush urged Americans to come together to support the victims of the hurricane.

The Ohio delegation has pretty good seats.