Tuesday, December 29, 2009

CanAssist Swing-Enabling System

Shira Fisher loves the thrill that comes from soaring through the air on a swing.

The four-year-old girl first tasted the freedom of swinging when her dad rigged a special swing for her in the backyard of their Victoria-area home. But because Shira has Spinal Muscular Atrophy, a genetic disorder that has severely affected her muscular development, she has never been able to swing anywhere else.

Shira longed to be able to swing alongside other children at some of the numerous parks in her neighborhood. While there are swings on the market for children with disabilities, none worked for Shira and could be attached and removed from a standard park swing.

"Shira's father, Brad, had an idea of what he wanted," recalls Brandon Fry, an engineering co-op student at CanAssist who was assigned to work on the request. "He already had a supportive seat designed for kids with special needs. He asked us to modify it so it could be attached easily to any park swing."

Brandon attached a seatbelt-like system to the back of the store-bought Tumble Form Chair. The chair's firm foam material safely supports a child in a reclined position, an important consideration for Shira. Then Brandon added a metal back support with two metal rods that link at both ends to a swing's two chains.

When Shira and Brad met CanAssist staff at a local park, Shira was so anxious to begin swinging that she was almost in tears. Being four, patience is not a readily available virtue at this point. But once Brandon buckled her into the new device, Shira was humming softly and smiling brightly.

"She wanted to get on it pretty quickly," says Brandon. "And once she was in, she wanted to go higher and higher."

Apparently Shira is a real adventurer, much to the chagrin of her protective dad.

Shira stayed and swung while the CanAssist crew packed up to go. Finally able to swing just like other kids, she didn't want her first adventure in the park to end too soon.

"Some people wish they could fly, some people wish they could simply swing," Shira's dad wrote to CanAssist later. "CanAssist made my daughter's wish to be able to swing with other children in any park come true. Thank you CanAssist."

Brandon ensures the seat
attaches securely to the swing. Shira's father, Brad, gives
Shira a push.

Tuesday, December 22, 2009

Our Children. Our Gifts.

A new consciousness has permeated our household. Yesterday I changed Shira’s schedule. Shira used to go to bed at 10PM and wake around 9 A.M. and by the time she got off her respirator and all her physio was completed it would be around noon. I moved Shira’s schedule back by waking her at 7 or 7:30 A.M. Now Shira is waking at the same time as our 7 year old son Sammy and going to bed at the same time as he does. Shira feels so much older now that she is doing this. When it’s time for them to go to bed and we call out, “Ok kids it’s time for bed let’s get ready” you can see the joy in both of their faces. They are brother and sister, as one! The best thing about this time change is that it allows Shira and Sammy to spend much more time together. Shira used to be taking her Bipap (respirator) break the same time Sammy would get home from his after school activities which meant he had to be quite and I was unavailable because I was with Shira. Now Shira is finished with her bipap break by the time Sammy arrives home which means we can all play together.

Shira’s bath time is now at 5ish vs. 9 P.M which means Sammy can take part. I haven’t been in water with Sammy for quite some time but he really wanted to climb into the bath with us this evening. It was so beautiful and heart breaking to watch Sammy gently wash his sister and rinse her off. I washed Shira’s hair and Sammy rinsed her hair. Shira thought it was all quite amusing especially when I accidently raised her feet kicking Sammy in the head with Shira’s feet and being the little actor guy he is he sank under water. If you could only hear Shira’s laugh it is so gentle and sweet.

After the bath we continued playing in the living room. Shira was having a blast with her new Lion King Action set I found on Ebay for her. Sammy also loves it and wants one (the concept of sharing is a hard one to learn). The Lion King has taken over the household. Shira refers to me as Mufasa and I have to call her Simba; this goes on most of the day. The kids played for an hour and a half together with hardly any supervision accept for suctioning and position changes for Shira. Maxine and I sat in the kitchen just listening to them. Sam is such an amazing little boy. He is only 7 and he looks after his sister. He makes sure she has a toy in her hand, is comfortable, able to see everything he is doing and they talk sing, play make believe and interact deeply. Sammy is full of hugs and kisses for his sister and it just moves us so deeply to watch him and his gentleness.

At the end of play time it was fun to watch them argue over who gets to be Paul Stanley from Kiss. They ended their time together by watching some KISS videos on youtube. Shira has quite the will, she just does not give in to Sammy.

It took us so long to get to this place where our lives seem to be somewhat regular. More and more we witness our children playing effortlessly, without the boundaries of a life threatening disability and we wonder is this really happening to our family? They sound so “normal.” Without physically being in the same room with Shira you would never know she was as sick as she is except for her speech.

Every day Shira wakes up that day of life is a gift and every day we have Shira in our presence we are granted our greatest wish. I can only imagine what kind of man our son is going to grow up to be. I see this young boy love so deeply, strive for ways to understand her, touch and hold his sister so gently, communicate so deeply and all with no fear.

I know I don’t talk about our son as much as our daughter but I say it now, “We love you Sammy; you are amazing!”

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.