Sunday, December 6, 2009

Death, not disability, is the end of the world


I've been up since 5:30 this morning because the roof on our back porch has almost been torn off by the high winds here. In between going outside in the freezing cold and placing 10 lb weights on the roof to hold it down I've been doing a little research into quality of life and came upon this article. I have to say after I saw Million Dollar Baby I was left with a bad taste in my mouth. Because the movie was so well received without any critic about disability and quality of life shows what the general public thinks about the disabled. It's the old NIMBY or Not In My Back Yard approach to life. If I don't see it it's not my problem. Well we were a normal family before our daughter was born with a life threatening disability so I guess now were not normal. But as Groucho Marx said, "I don't want to join any club that would have me as a member!"

Death, not disability, is the end of the world
CBC News Viewpoint | February 03, 2005 | More from Disability Matters

This column will feature three writers, each with a different disability. They all have something to say about living with a disability and how they view awareness and attitudes toward disabilities in Canada. The column will deal with the rights of people with disabilities, eliminating inequality and discrimination, and issues of self-help and consumer advocacy. Our plan is to rotate among our columnists to have a new column each month.
Ed Smith Ed Smith is a retired educator and full-time writer. His humour column runs in several papers and magazines and he has had eight books published. He has been quadriplegic since 1998. Ed lives in Springdale, Nfld.


Clint Eastwood just lost me as a fan, something I'm sure will keep him awake nights.

His latest movie, Million Dollar Baby, has won praise from everyone who's seen it, and perhaps a few who haven't. As a person with quadriplegia I see it as nothing more or less than a scurrilous attack on people with spinal cord injury specifically, and those with disabilities generally.

A couple of years ago I gave a keynote presentation to a conference on disabilities. It was meant to be an upbeat and "go get 'em" type speech and from the standing ovation at the end it seemed I had succeeded admirably. Less than an hour later one of the delegates to the conference (we'll call him Jack) button-holed me in the hotel lobby. He looked me up and down and then spoke in confidential tones.

"When I see you now," he said, "and remember what you used to be like, I think 'twould be better if you were dead."

Jack and Clint would have hit it off well. Million Dollar Baby, which Eastwood both directs and stars in, is the story of a fight manager with a promising young boxer. The fighter gets a spinal cord injury in a fall and at her request the manager (Eastwood) kills her as she lies in a nursing home. The film will likely win all kinds of awards.

Not from me, even if I had them to give. Eastwood has hardly been a friend of people with disabilities. He was sued in 1997 for refusing to include $7,000 worth of accessible bathrooms in his $6.7-million resort renovations. Caring chap, Clint.

So it's what the boxer wanted, right? It's what I wanted, too, when I discovered I was paralysed in almost 90 per cent of my body. I pleaded with my wife to have me shot or put down in some merciful fashion. At the time, I didn't even care if it was merciful. That was for the first two days. Now, six years later, I'm rather glad she didn't.

Actor Christopher Reeve had a similar experience. So did many people I know who have suffered from catastrophic injury.

Incredibly, a preponderance of the population, even in our "enlightened" Canadian society, agrees with Jack that we're better off dead.

Some years ago I did a short editorial segment for CBC radio in which I defended Robert Latimer's second-degree murder conviction for having taken the life of his multiple handicapped daughter Tracy. I disagreed strongly with those who wanted him pardoned and set free. The producers told me later that calls and e-mails were running five to one against my position.

It's no fun being quadriplegic. We have to battle attitudes that believe us to be incapable of speaking for ourselves, unworthy of any accommodation of our physical needs, and something less than "normal." We wait in the snow or the rain outside hotel and restaurant doors that don't have automatic openers, hoping some kindly soul will see us and come running before we perish. We endure while waitresses and store clerks talk over our heads to our spouses or caregivers about what kind of pie or size shirt we want.

We get stuck in cubbyholes in the back of theatres and movie houses. I have almost been physically attacked while asking an able-bodied motorist to remove his vehicle from a handicap parking space so we could get close to an entrance.

While I was in a rehabilitation centre in Toronto my wife called several churches to see if they were accessible. Perhaps we chose the wrong churches or the wrong denominations or the wrong religions. She didn't find one that wouldn't have put me at the front of the church to be stared at, or in the middle of an aisle to be an obstruction.

Despite all this, the vast majority of spinal cord injured persons have a good quality of life. We have family and friends, hobbies and pursuits, occupations and pleasures. Life has changed irrevocably, but it has not become a hell so tormenting that we'd be better off dead. On good days it's downright bearable!

Million Dollar Baby sees no opportunity for any quality of life with spinal cord injury. Its premise is that unless you can walk and/or use your hands your life has no value.

I know several people with quadriplegia who swear up and down that they are really happy. Some of them have even said they're glad they had the accident because it changed their lives for the better. A friend who is also quadriplegic assured me not long ago that he didn't have a complaint in the world.

Although we all admired Christopher Reeve for many reasons, some of us had problems with his obsession that the only goal in life worth pursuing is to walk again. That just isn't going to happen for many of us so we get on with the task of making a contribution to our community in whatever way we can, and being as happy as the next person while doing it.

Being physically disabled is no picnic, God knows. But, Clint and Jack, it isn't the end of the world.

Tuesday, November 24, 2009

Beckman Oral Motor Therapy-Sometimes It All Comes Together

A few months ago I discovered a new oral therapy while reading through posts on http://www.smaspace.com The therapy is called Beckman Oral Therapy http://www.beckmanoralmotor.com/. Because SMA Type 1 patients get jaw contractures and have very limited range of motion in their jaws I have always been concerned about what the future holds for Shira's ability to keep speaking. I knew I had to take some kind of action before it was too late and this video appeared http://smaspace.ning.com/video/romansspeech-therapy-oral Today the head speech pathologist came over to improve the techniques I had learned by watching the video. I will post a video soon as well as the instructions I received from Phil Harmuth on Beckman Oral Therapy. I can't say enough about Shira's progress from our daily Beckman routine. Shira's jaw has more movement than ever before and she can actually seperate her upper and lower jaws. If you aren't already performing oral therapy on your child I strongly suggest doing some form of oral therapy to help prevent contractures and keep some range of motion in the jaw. This therapy also has relieved a lot of pressure in Shira's face. Sometimes everything just comes together and this is one of those days. Thanks Phil Harmuth and the Queen Alexandra Centre!

Wednesday, November 18, 2009

2 Great Books By Christopher Reeve--Advocacy


"So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. If we can conquer outer space, we should be able to conquer inner space too--the frontier of the brain, the central nervous system, and all the afflictions of the body that destroy so many lives and rob our country of so much potential."

While Christopher Reeve did not suffer from a degenerative disease his catastrophic accident which left him a quadriplegic and vent dependent changed his life forever. Christopher Reeve's insight into living with paralyzes and how it effects your life is profound. Christopher wrote 2 books and I strongly suggest everyone read them as they give great information on family dynamics, hope, and the books are heavily weighted on advocacy. Without Chistopher Reeve stem cell research wouldn't be where it is today as he really increased funding for stem cell research as well as political will to a whole new level while he was alive creating the environment or stepping stone for scientists today.

Christopher Reeve "Still Me": This book deals with Christopher before and after his accident. This is his first book and obviously an inspirational story of his entire life. You get an eyeful of his child hood through adult hood, his injury, emotional and physical trauma and how he rebounded into one of the most effective advocates for the disabled in the United States ever!!

Christopher Reeve "Nothing Is Impossible": This is a must read for us advocates!!! The book is not deep but it goes into Christopher's thought process's one goes through after a catastrophic diagnosis or injury:
1) The First Decision
2) Humor
3) Mind/Body
4) Parenting
5) Religion
6) Advocacy
7) Faith
8) Hope
Christopher Reeve was an avid sailor and the lighthouse does not have religious meaning here. Here is an excerpt from his book:

"When the unthinkable happens the lighthouse is hope. ONce we find it, we must cling to it with absolute determination, much as our crew did when we saw the light of Gibb's Hill that October afternoon. Hope must be as real, and built on the same solid foundation, as a lighthouse; in that way it is different from optimism or wishful thinking. When we have hope, we discover powers within ourselves we may have never known---- the power to make sacrifices, to endure, to heal, everything is possible. We are all on this sea together. But the lighthouse is always there, ready to show us the way home."

Monday, November 16, 2009

4 year-old Shira Fisher is terminally ill in the news

CLICK ON ME TO WATCH VIDEO OF NEWS CAST

VICTORIA - 4 year-old Shira Fisher is terminally ill with Spinal Muscular Atrophy or SMA. Her parents were told she had months to live, when Shira was first diagnosed four years ago. But the young girl continues to defy the odds.

Her parents, Brad and Maxine, have become advocates for Shira and other SMA kids. Last week, they were told their application to get Shira a vaccine to fight out RSV (a virus that attacks the respiratory sytem) was denied. Shira has twice beeen hospitalized with RSV and both times nearly died.

Her parents believe the vaccine can keep Shira out of the intensive care unit this winter. The Fishers contacted A News and within 48 hours, BC Children's Hospital announced its vaccine protocol for the province would include children with SMA who are under 15 kilograms. Shira now qualifies and was given her first set of anti-RSV shots today.

The Fishers believe Shira's original rejection was over money - the vaccine costs about $8,000 and they worry about other families with special needs children won't fight the system to ensure quality care.

Monday, October 12, 2009

OUR BEAUTIFUL DAY WALKING ON DALLAS ROAD


CLICK ON ME TO WATCH OUR NEW VIDEO!

Wednesday, October 7, 2009

Shira Swings On Her Converted Tumbleform Chair


"A girl, my daughter. She is a being more rare, more beautiful, purer,
more perfect and more delicate than the wildest dream of a poet. I can
never believe her to be my own flesh and blood. Her beauty is a
well-spring of purest water-of-life, and t...o look upon her is to drink
and drink and drink again.......

She is rare, a perfect creation, a work of purest art. A delicate
flower that bloomed in the liquid light of the moon. A nature not of
this world, a personality like that of some biblical maiden, gracious
and queenly. I find it difficult to believe her my own........"

-Excerpt from the book The Invisible Man by Ralph Ellison but I changed it to present tense!

Click link below to watch Shira swing!!

CLICK HERE

Friday, September 25, 2009

Letter Warns About Tricky Dosing With Liquid Tamiflu for Kids

Letter Warns About Tricky Dosing With Liquid Tamiflu for Kids
Published: Friday, September 25, 2009 | 6:45 AM ET
Canadian Press

(HealthDay News) - Doctors warn that parents across the country could give the wrong dose of Tamiflu to their children as treatment for the H1N1 swine flu because the dosing instructions don't always coincide with the measurement markings on the syringe that comes with the liquid medication.

The warning letter, penned by scientists from Northwestern University Feinberg School of Medicine in Chicago, Emory University in Atlanta and Weill Cornell School of Medicine in New York City and published online Wednesday in the New England Journal of Medicine, also urges doctors and pharmacists to be on the lookout for this potential dosing mismatch and to help parents figure out exactly how much Tamiflu to give their child.

The authors cite a case that they say is probably happening all over the United States: The parents of a 6-year-old girl diagnosed with the H1N1 virus received a prescription for Tamiflu Oral Suspension that told them to give her three-fourths of a teaspoon of the medicine two times a day. However, the dosing syringe inside the box was marked in milligrams. The confused parents, both of whom are health professionals, had to figure out how to convert the measurement, something most parents would find too daunting to do.

"It's an egregious error that there is a conflict in the prescription labeling instructions and the dosage device that comes in the exact same box. It's incredibly confusing to parents," letter co-author Michael Wolf, an associate professor of medicine and learning sciences at Northwestern University Feinberg School of Medicine, said in a news release from the university. "Tamiflu is one of the main courses of treatment right now for H1N1, and it is being widely used among children, even infants."

The letter's authors recommend that all pharmacies and physicians be instructed to ensure that the prescription label instructions for use are in the same dosing units as those on the measurement device.

"Parents being prescribed Tamiflu for their children need to make sure they understand exactly how to take it at the time they pick it up at the pharmacy," lead letter author Dr. Ruth Parker, a professor of medicine at Emory, said in the release.

Wolf warned that an overdose could be toxic, and an underdose could be ineffective.

And even more complex calculations might be necessary now that the U.S. Food and Drug Administration has approved Tamiflu for off-label use among children under the age of 1, because the syringe doesn't include small enough measuring increments for these youngest patients.

"We need to have a better system for ensuring there are standardized directions for administering drugs to children," letter co-author Dr. Alastair Wood, a professor of medicine and pharmacology at the Weill Cornell School of Medicine in New York City, said in the news release. "We need to move to a system where all doses are given in the same units, preferably milliliters."

Meanwhile, a report released Thursday supports recent U.S. Centers for Disease Control and Prevention recommendations not to use negative rapid test results for management of patients that may be infected with the pandemic swine flu virus.

Researchers in Connecticut assessed the performance of the rapid influenza diagnostic test (RIDT) used during outbreaks of pandemic influenza A (H1N1) at two schools in Greenwich in May 2009. Of the 63 people tested at Greenwich Hospital, infection was confirmed in 49 patients.

The results of the RIDT were compared with the reverse transcription-polymerase chain reaction assay. A low sensitivity of 47 per cent was found for the rapid test. This poor performance couldn't be explained by the clinical features of the patients or by the timing of the specimen collection, said Dr. James R. Sabetta, of the Greenwich Department of Health and the Connecticut Department of Public Health, and colleagues.

While a positive rapid test for influenza is helpful, a negative test doesn't rule out pandemic swine flu, the researchers said.

The report appears in the Sept. 25 issue of the Morbidity and Mortality Weekly Report, published by the CDC.

More information

The CDC has more about http://www.cdc.gov/h1n1flu/ H1N1 flu.

SOURCES: U.S. Centers for Disease Control and Prevention, news release, Sept. 24, 2009; Northwestern University, news release, Sept. 23, 2009

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