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Monthly Archives: June 2013

Low Life Scum Robs Disability Non-Profit

By Greg Smith

Image of hole in the ceiling over Cindy Singletary's desk at LIFE.  Where the robbers entered.

Yeah you are a real gangsta!  You planned the perfect heist.

You arranged for an open window in an adjacent building, came in through the attic, cut a hole in the ceiling, and climbed out with 5 laptops valued at about $3,000.  Big score.  Congratulations.  They should make a movie about you.

Except they don’t make movies about low life scum who steal from independent living centers.  You don’t get a theme song.  No big-name star would take your role.

Do you even know what an independent living center is?  I’ll tell you what it is.  It is a non-profit organization, run mostly by people with disabilities that provides independent living skills training, information and referral, peer support and advocacy for people with disabilities.

A quadriplegic named Ed Roberts started the first one in the 1960′s in Berkeley, California and there are now over 400 of them across the country, providing the services that give people with disabilities a fighting chance to maintain full inclusion in the mainstream of community life.  They range in size from the one in Phoenix with an annual budget of over $25 million to very small organizations like the one you hit in Biloxi, Mississippi.

But to answer my own question, yes, you do know what an independent living center is because you could see the posters on the walls.  You could read the names on the certificates and degrees as you were carefully unplugging and stealing computers and cables from people’s desks.

Cindy Singletary

Cindy Singletary, Independent Living Specialist, LIFE

One of the names is Cindy Singletary, Independent Living Specialist at LIFE (Living Independently for Everyone). I noticed you were careful to not knock her Southern Miss degree on the floor when you pulled her desk away from the wall to access her laptop cables.

“We went into the office and there was a pile of plaster on the floor and sheetrock hanging from the ceiling,” says Cindy.  “We looked around and noticed the laptops were missing.  We lost the whole network.  All the info about what we’ve been doing with each and every individual.  That’s 300 records and includes years of history for each client.”

Thank heavens, Cindy is one of those people who backs up everything so the records are recoverable.  But your actions brought important work to a grinding halt.

“All of our work with Social Security assistance is on hold.  All appointments had to be rescheduled, slowing down an already lengthy process,” says Cindy.  “Today, all we could do is provide information using our own personal computers.”

LIFE will survive.  Readers of this blog and those who see the media coverage of your stupidity will come to the rescue and help replace what was lost. People can donate by mailing or taking a check, money order or cash to LIFE of Mississippi, 2030 Pass Road, Suite C, Biloxi, MS 39531

“It had to be somebody who knew what we had in here and knew a little bit about the construction and layout of our building,” says Cindy. “If it was a client, that’s really sad.  I feel bad for the persons who did this most of all.”

Nice lady.  I don’t feel bad for you.  I hope they catch you!  You messed with the wrong “crips.”  Maybe someone will offer a reward for information leading to your arrest.   Oh, and look for TV news coverage of your “heist” on Wednesday.  You’re going down!

 

What I Learned in Bed Last Night

Learning new tricks in bed

Every night, I sleep with the remote to my television, the remote to my Amish heater, and my cell phone. I figured out a while back that I should also sleep without covers under the ceiling fan, and adjust the temperature in my room with the heater. This way, I am not limited by the weight of the covers, which allows me to turn over much more easily.

This simple adjustment allows me to get much better sleep. Previously, every time I needed to turn over, I would have to wake up completely and figure out how to position the covers that were preventing me from rolling. I would have to struggle to get them out of my way.

In the past, I would frequently just pick up my cell phone and call for help in order turn at night. But since I have discovered the freedom that resulted from absence of covers, I have been doing this independently for the most part.

Moments ago, I woke up with the need to turn over. After working through the five minute process of posturing my body and gaining the leverage to make the turn, it was time to nestle back into the rest of my night’s sleep.

But the room was getting warm, and I needed to turn the heater off for a while. I put my hand behind my back to feel around for the remote. I tried every position of my arms I could think of to increase the area of my search. I felt the remote to the television. I found my phone. But I could not find the small remote for that heater!

The temperature in the room swelled. I bent my arms backwards and folded them using all kinds of leverage tricks to try to increase the areas that I could feel around for it. Nothing seemed to work.

My options were to call for help, endure the hot temperature of the room, or dig deeper and find a way to locate the remote.

What I love about having muscular dystrophy is that it constantly challenges me to use my mind to compensate for what my body can’t do. I always find a way. I love the feeling of victory over the challenge.

I could not feel the remote. I needed to see where it was. How could I see it? I turned my cell phone on and put it in “video camera mode.” I turned the flash on and started to record. Pointing the camera behind my back, I moved it slowly up-and-down facing the mattress behind me to try to locate the remote! After recording for about 20 seconds, I turned the camera off and looked at my “film.”

Nothing… nothing… There it is! Right next to the TV remote only about an inch closer to my body that I had felt. How did I miss it when I was feeling around?

But now I knew exactly where it was. I easily grabbed it, turned the temperature down in the room and began writing this story, because I felt proud of my creative solution to the problem. Another little victory in the game of life! Now back to sleep.

Would you have thought of that solution? I am learning that the answers to all of our problems are within reach. It’s just a matter of focusing on the solutions and bringing them out of the darkness using new sources of light.

Monetized Motivation!

By Greg Smith

Putting a Price Tag on Your Productivity

There’s a display panel on my wheelchair that lets me know what “gear” I’m in and when it’s time to recharge the battery. Most people mount it using a long metal adjustable arm. But that arm doesn’t fit my lifestyle. It gets in the way. So since I got the chair, I just let mine hang on my armrest. I don’t need to see it. I can feel the on-off switch, and it beeps 4 times to let me know I’m in maximum speed mode.

A couple of weeks ago, the display found itself on the wrong side of the seat belt in my van. When I reversed my chair away from the van’s steering wheel, the seat belt yanked the cord leading to the display which exposed colorful wires and immediately, my chair stopped working completely. I jiggled the wires for a minute and quickly got the right response: “Beep beep!”

Photo of broken display panel

Cool. I exited the van and went about my business for about 10 minutes before I engaged the joystick and felt no response. I jiggled the cords again for about 5 minutes. “Beep beep!” I struggled through the day like this, but each time I jiggled the cords, it seemed like it took longer to get the “Beep beep!”

I called Joey, the guy who fixes my chair. He ordered a replacement display panel. So for the next week, I was jiggling and waiting. Each time, I wondered whether there was going to BE a “Beep beep!”

Finally, the part arrived.

“It’s going to be $800.”

“WHAT????”

Things suddenly happened in my brain. I Googled “Electrician in Ocean Springs, Mississippi” and AG Electronics popped up.

“We don’t do medical equipment. We do mostly construction,” the dude said. I worked him like a sales rep gunning for a big commission, telling him not to worry if he did further damage because it’s already broken.

“At least come take a look at it!” I emailed him some photos of the part and he agreed to come give it a try.

I was confident when I saw him arrive wearing the little flashlight headband. His name was Gilbert. After getting the proper tools, he removed six screws holding the box together. Carefully, he gently pulled the box apart to take a peek inside. He was slow and steady in his movements so as not allow any of the many parts inside to fall out.

Now, was it the pink wire? The blue wire? The red? The yellow? Which one needed to be reattached? Did Gilbert have the steady hands to do the job?

All of the wires led to a white plastic plug that had simply been pulled apart! He plugged the two pieces back together! Job done. Beep beep!

I did my Strength Coach “fist pump” and happily gave him my credit card, which was billed $75! We talked about business and compared our receding hairlines. I made a new friend. The next day, Joey sent the replacement part back to the manufacturer. My savings? $725!

Moral of the story? I guess if you’re properly motivated, you can get creative and think outside the box. (Sorry, not an intentional pun but it survived the edit!) The $800 price tag on the replacement box is what motivated me to seek another solution.

How can I use this lesson going forward? I think there is a price tag on not fully thinking things through to the best solution. We also pay for the calls we don’t make and the projects we don’t finish. There is a price tag on the steps to success we have identified but not taken action on. Maybe that $750 I saved by making that call is just a drop in the bucket compared to the value of following through with the plans that lead to my dream come true. Maybe it is time to start monetizing my motivation.

Your thoughts?

 

Young Disabled Blogger Set for Stardom?

By Greg Smith

Blogger’s “I’m Dying” Message a “Nightmare” for Disability Community

Screen Shot 2013-06-06 at 2.14.05 AM

It is not very often that a young person with a severe disability gets on the Katie Couric show on ABC, gets coverage on the Today Show, and commands the kind of national media attention 21-year-old Shane Burcaw has enjoyed recently.  Burcaw was born with the same disability I have: Spinal Muscular Atrophy.

Two years ago, he started a blog that has exploded in popularity.  Thousands of readers follow his often humorous observations about life through the unique lens from which he views the world.  He is a senior college English major and an excellent communicator.  The girls call him “cute.”

Shane has the support and love of several friends and family members who all look like they were cast by a Hollywood agency to play their parts.  But they are not acting.  Their genuine love, respect, and admiration for Shane shines through.  Shane inspires and motivates people everywhere he goes and he aspires to be a motivational speaker.  Recently, he and his friends went on a 9 city tour to raise awareness and money for a documentary film about his life.

The disability community has long sought our young “star.”  We’ve needed someone with a real disability who is a household name in America.  Someone who is an example for people with disabilities to emulate.  Ladies and gentlemen…. I give you our STAR…

Wait a minute…

What’s the name of his blog?  “Laughing at my Nightmare.”  What nightmare?  We read the first paragraph of the first entry:

“I will most likely be dead before I turn 30,” he begins. “Even that estimate is a generous one. I have a disease called Spinal Muscular Atrophy (Type 2) that has been slowly destroying all the muscles in my body for the last 18 years, 11 months, and 354 days. Eventually I will catch a cold, it will turn into pneumonia, and my body won’t be able to fight it off…”

OK, let’s hold off on the STAR for a minute.  Our STAR can’t be basing his entire rise to stardom on his own death, can he?  Well, I suppose he can do whatever he wants to do.  This is America.  But hopefully, young Shane is open-minded enough to consider different perspectives about his approach.

What’s the story here?  Shane is dying?  He has a sense of humor about it?  He makes us laugh?  He makes us realize that we have nothing to be afraid of?  If he can live his life facing death, we can live our lives and appreciate all that we have going for ourselves, right?  That’s the message?

That’s not the message.  That’s the slant.  The hook.  The real message is that Shane is a talented writer with a strong and positive personality and a great support system of family and friends, who is living his life with muscular dystrophy to the fullest and inspiring people along the way.  He doesn’t need the “I’m dying” part of it at all.

Like it or not, as Shane’s star rises, he represents all of us with SMA, and moreover all of us in wheelchairs, and moreover all of us with disabilities.  He doesn’t need our approval for his star to rise.  Most non-disabled Americans won’t even think to question the accuracy of his self-death sentence, nor the morality of the leveraging of it for marketing purposes.

Like Shane, I was diagnosed with SMA as a toddler.  My parents were told that I would die in my teens.  I knew about that assessment growing up.  But I was too busy doing my thing to worry about it.  I’ve never worried about it and I’m now a 49-year-old father of three.  Eight years ago, I was diagnosed with congestive heart failure.  That was supposed to “take me out” within 5 years.  But I’m traveling the country speaking and focused on building my business and transitioning my kids out of the nest.  I realize that drowning in my own fluid will probably be the way I exit this world, but I’m not going to use that as a marketing crutch to get more press.  I’m LIVING with my disability.  Not DYING of it.  And it’s not a nightmare.  Life has been a dream come true!

Now, I’m not Shane-Hating!  I like the guy.  I would love to meet him and talk to him.  I’d probably have more in common with his dad.  It would be cool to get our families together.  I have so much I could teach them.  I will reach out to them.

When Shane cracked the national media barrier, he graduated to a new level of responsibility, like it or not.  I had to be taught the same lessons I’d like to teach him when my radio show exploded in the early 90s.  I was firing missiles without having been to boot camp!  I listened, learned and adjusted.

Shane, you are a representative for millions of Americans with disabilities.  Like it or not,  you simply are.  You have the potential to shatter barriers that we have worked tirelessly for decades to overcome.  Nobody is asking you to become a disability rights leader.  Nobody is asking you to change anything about what you do.  It’s how you do it.  If I had a chance to talk to you, I’d discuss the “packaging” more than the “product.”

The “I’m dying” thing worked.  It got you where you are.  You don’t need it anymore.  Drop it.  And you’re not laughing at a “nightmare.”  You should be laughing because you are living a life in which your dreams are within reach.

Like I said, acceptance from the disability community is not a pre-requisite to your star rising.  But that acceptance and support could definitely move away some of the barriers and make your appeal more universal.  How open minded are you? I’ll be in touch.