Tuesday, February 15, 2011

With a little help from a new friend

The other day I got a call from my friends at Paws With A Cause. It was the call we had been hoping for. After nearly three years of applications, interviews, fund raising and waiting, they had a dog for me.

Not any dog, but a service dog that, once trained, will help me live a better life.

For years, Toni and I had talked about getting a dog that could assist me as well as provide Toni some peace of mind when I am alone in the house. But when I started researching service dogs in 2007, I was dismayed to find that most of the organizations that provide dogs require the recipients to travel to the facilities for weeks of training.

I say most because Paws With a Cause was different.

Unlike the other organizations I found, Paws does the preliminary dog training at its Michigan facility without you. Once they feel the dog is ready, they bring it to you, and a trainer continues working with you and the dog in your house over the next three months.

Not only will the dog provide great companionship, it will do a host of simple tasks I no longer can do – including call for help in case of an emergency.

The process has been long and thorough to get to this point. It’s no wonder they are the nation’s leading provider of service dogs. And it’s no wonder each dog costs about $20,000 to raise and train. All costs are paid through donations so recipients aren’t asked for a dime. If you’re interested in making a donation, you can go to the organization’s website at www.pausewithacause.org or send a check to Paws With A Cause, 4646 South Division, Wayland MI 49348.

In about a week, I am expecting another call from the people at Paws telling me whether the dog they are working with is a good fit for me. If the dog clears that hurdle they will provide details about my new companion – its breed, name and picture.

And if all goes well, the dog will be moving in sometime in May. I’ll keep you posted.

Tuesday, January 18, 2011

Reading made easy ... again

When you live with a disability, you’re always on the lookout for ways to make life easier. I’m not talking about playing the latest lottery creation. I’m interested in devices that help me compensate for my physical limitations.

Don’t get me wrong. A big pile of cash would be nice. But I’m talking about life-changing technology: the equipment that enables me to drive my van, the power wheelchair that gives me reliable mobility or the portable ceiling lift that is no bigger than a toaster but moves me with ease.

And now my new Kindle.

That’s right, my Kindle. Because of my declining upper body strength, reading books - holding them open to read, even turning pages - is a battle. Now it’s as simple as pushing a button. Not only is it easy to hold and read, but also buying books is a snap. Instead of rolling around a bookstore where I would always require assistance, I buy books online and they appear in my Kindle within minutes.

I considered buying an iPad instead of the Kindle. A lot has been written about how the iPad is a great device for people with disabilities. Just google iPad and disabilities and you will find numerous stories about how the tablet is helping people with special needs.

But I’m not sure I would find it all that useful. I struggle with touch screens because of my weak arms and my fingers are, well, girthy. Not only is typing on a touch screen frustrating, some of the 2-finger commands are impossible. That’s why I use a Blackberry instead of an iPhone.

While the iPad has dominated the tablet market, a host of other companies will be releasing tablets in 2011 that will make the devices more affordable. And with more devices flooding the market more people will have access to the technology and more adaptive uses will follow.

With lower prices and more applications for people with disabilities, tablets clearly will be a life changer for more and more people. I might get one eventually, but for now, my latest life changer will have to be my Kindle. It’s not a flashy tablet but it has enabled me to enjoy books again.

Monday, January 3, 2011

A good neighbor indeed

Nothing warms my soul more on a snowy day then to see my neighbor, Ray, a retired school teacher, crossing the street with his snow blower to take care of my driveway.

Ray’s the kind of neighbor you speak to a few times a year or wave to as you drive by. It’s not like we drink beers together and watch football or share family events, but he is always there if I need help.

And for a man in a wheelchair, that’s very reassuring.

I know I could pay to have my driveway cleared but Ray steps up to the plate because he knows I could use a hand.  I don’t even have to ask.

Not only is Ray good with a snow blower, he is also part of my support network in case I get into a jam when I am home alone. Live in a wheelchair and you’ll realize those things happen more than you care to admit.

I’m forever thanking him, but it never seems to be enough. Neighbors like Ray make good neighborhoods and I think municipalities should go out of their way to honor residents who voluntarily help neighbors who are disabled.

In fact, I’d love to see my town initiate a program where neighbors sign up to assist a disabled neighbor. Call it the Good Neighbor Network. I’m sure other residents would gladly volunteer. Then at the end of each year we could nominate a Neighbor of the Year and hold a dinner to honor all the nominees.

What do you think? If you have a person with a disability in your neighborhood will you sign up to help?

Tuesday, December 21, 2010

Too many stories, not enough spots

It used to be that everyone loved to go Christmas shopping with me. Not because of my generosity and warm personality.

I always got great parking.

But those days are long gone. Now, it’s almost impossible to find an open handicapped parking spot. And all too often, those spots are filled by people without disabilities.

I admit I haven’t done an exhaustive study of handicapped parking in New Jersey, but the little I know explains why I can never find an available spot.

In 1981, about 7,000 people had either a handicapped license plate or placard.

In March 2010 there were 430,312 placards in circulation. That doesn’t include handicapped plates! I’m still waiting for the state to provide that number.

And it also doesn’t include people who receive temporary placards because they had surgery, are injured or even pregnant. The local police departments hand out those placards and nobody really knows how many of those are in use. Factor in people who don’t stop using them after they expire and the numbers pile up.

Of the placards I can count, there has been more than a 6,100 percent increase in less than 30 years. Is that possible? I mean, without an epidemic? I accept that more people with disabilities are able to get out and even drive thanks to the ADA and technology. That’s what we all want. But an increase of more than 423,000? There are only about 1.4 million people in the state who have a disability according to the 2000 census, but that includes ages 5 and up. I wonder how many drivers with placards would be part of that group. My guess, not 430,000.

According to the state Motor Vehicle Commission, ``any person who has lost the use of one or more limbs as a consequence of paralysis, amputation, or other permanent disability or who is permanently disabled as to be unable to ambulate without aid of an assisting device or whose mobility is otherwise limited as certified by a physician'' can legally obtain a special parking placard or plate.

Obviously, there’s no debating the first part of the law. If you’re missing a limb or the use of a limb or need an assistive device to walk, you have a disability and you are entitled to special parking privileges. But if all you need is a friendly doctor to write you a note, well, I’m sure you’ve heard the stories.

I know every time I bring this topic up someone’s telling me about a friend or a relative who has a placard even though their mobility is not limited. How about the family member who legitimately had a placard but has since died and now the placard is passed down to other family members like an heirloom? The stories are endless but the spots are not.

Clearly there are legitimate reasons to have a parking permit even though you don’t have a visible disability. But it’s rare when I see people with obvious disabilities taking up the cherished handicapped spots. We’re the ones parked 20 rows deep, across two spots so we can deploy our ramp without someone blocking us in while Billy Bob parks his monster truck right in front of the liquor store so he doesn’t have to carry the three cases of Schlitz too far.

It’s time the state tightens up the regulations that have allowed for the proliferation of placards and plates and start fining people who abuse the privilege. New Jersey is desperate for revenue? Hike the fines and start cracking down on the abuse. Demand placard users produce the valid ID card associated with the privilege and let’s start weeding out the fraud.

Not only are the rules for obtaining a placard or plate lax, I doubt anyone has really looked at the regulations governing the number of handicapped parking spots in a lot since the ADA came out 20 years ago. With the growth in placards maybe we need to increase the number of spots designated for the disabled.

The bottom line is the laws and regulations associated with handicapped parking privileges are outdated. It’s time to crack down on the abuse and update the law.

Monday, December 13, 2010

Design planes for all people

I read an article the other day about a man with cerebral palsy who was kicked off a U.S. Airways flight because he was too disabled to fly alone.

It seems back in September Johnnie Tuitel, a motivational speaker from Michigan who rides a wheelchair, had already been helped into his seat by airline attendants when one of the attendants returned to explain that he had to leave the plane.

He later found out that airline policy stipulates that for safety reasons, if a passenger can’t assist in his own evacuation, he must have a travel companion.

Tuitel, who was on his way to speak at a conference, claims he has flown 500,000 miles and never experienced such indignity.

He told the Daily Mail that “I was raised to believe I could grow up doing what I wanted to do and it didn't lead me to any entitlement. By them denying me the ability to fly, I couldn't do my job.”
To have a travel companion would be too expensive and if he needs help, he’s sure the person next to him wouldn’t abandon him, he told WMBFNews.com

Tuitel said that it goes way beyond violating the ADA. He’s screaming his civil rights have been violated.

Most people will agree with Tuitel’s point.

Not me.

If you want someone to carry you off the plane during an emergency, bring a body caddy. Rely on a stranger to save you because you don’t spring for a second ticket? I don’t think so.

I always travel with a companion, usually my wife, so I’ve never been asked to leave a plane. But airline personnel have refused to transfer me, due to liability. Thankfully, my wife is strong enough to safely move me. But even with an assistant, I’m always the last off.

And let’s face it people, if there’s an emergency landing, I don’t want my attendant worrying about me. I especially don’t want my wife sticking around. Clear the plane.  Save 300 people. If the plane is still floating on the Hudson when the rescue boats arrive, then it wasn’t my time. But I won’t live at the expense of others.

If you want to fight a battle over air travel, let’s demand the airline industry design planes so you can roll your wheelchair on the plane and lock down. I hate to fly because someone has to strap me onto a narrow metal aisle-wheelchair, bring me to my seat and then load me into my seat on the plane like a sack of potatoes. Then when you get to your destination, you have to hope that they are ready to get you off the plane.

If they design planes with two available slots for full-sized power chairs, you could get on and off the plane quickly with your dignity intact and you don’t have to check your $25,000 wheelchair in the baggage hull where damage is almost guaranteed.

Design planes for all people, not just walkers.

Then we can start fighting over the bathrooms. 

Monday, December 6, 2010

Proud to be part of the AbleNation

My name is Peter George Callas Jr.

I’m 51 years old.

And I’m handicapped.

Stripped to the bone, that’s who I am.

I know I shouldn’t refer to myself as handicapped but rather a “person with a disability.” But I’m not one for political correctness and I won’t buy into euphemisms when talking about myself. When you can’t raise your hand to scratch your nose or even breathe without help, I don’t care what you call me. I am messed up.

For nearly 40 years I have battled with Muscular Dystrophy over who controls my body. Slowly but surely the disease is winning the war. As much as I hate my handicap, it is just part of who I am.

I used to be worried about being considered handicapped. When I was younger and the disease was less evident, I didn’t want people to know. I never described myself as handicapped because I didn’t want to be judged.

Now I’m proud of it. I wear my disability like a badge of courage. I know it’s not like fighting for our country or running into a burning building to save a life, but I’d like to think that people like me, those who refuse to lie down when faced with monumental adversity, do deserve some recognition for putting one foot in front of the other, metaphorically speaking of course.

When I was diagnosed with Muscular Dystrophy – specifically FSH – I was a frightened 13 year old. But I was fortunate because I had great parents who taught me never to feel sorry for myself. They taught me about courage and perseverance and that strength wasn’t measured by how much you could lift. They taught me that just because I had a disability didn’t mean I couldn’t do whatever I wanted in life. And they never expected anything less from me.

I still remember the day shortly after the diagnosis when my dad sat me down at the kitchen table and gave me the FDR talk – how a man with a disability became president. It wasn’t until years later I fully appreciated the significance of the FDR talk. It helped guide me as I pushed myself to succeed in a world that doesn’t welcome people with disabilities.

Where my life would have gone had I not been the recipient a bum chromosome is unknown. I’ve asked myself many times if I had the chance to start all over without a disability would I be willing to throw away all that I have achieved and all the people I know and love?

Not be married to my wife, Toni, a true saint who means more to me than life itself? My friends and family? How ‘bout all those Bruce Springsteen concerts, the Yankee World Series memories, the Rangers Stanley Cup? Key West? My 25-year career as an award-winning newspaper editor?

I’ll take the cards I have, thank you.

Like so many of the more than 50 million Americans with a disability, I have seen my abilities decline over the years. As much as I have fought the progression of my disease, I have had to make concessions that I never imagined. But my life has never been about what I can’t do but rather what I can do.

Now the question will be: Can I write a blog about issues confronting me? By talking about my life with a disability can I engage you in a conversation that will help us understand what it’s like to be handicapped in America? And are you willing to share your thoughts about living with a disability so that we can help this society look past the wheelchairs and accept us as part of the AbleNation?

You can bet your ass I’m going to try. That’s what WE do.