Fresh Perspectives

The Golden Rule

I recently watched a TED talk by Karen Armstrong.  She advocates that the “Golden Rule”, not convoluted dogma, should be the basis for all religion.  Imagine if all of us did our best to follow that Golden Rule; “Do unto others as you would have them do unto you”! 

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Independent Living - Choice!

When I tell people I live independently, they sometimes say "But you need help doing things.  How is that independent living"?  My reply to them is "Don't you sometimes need help doing things"?  Independent living isn't about help with activities, it is about choice!  The freedom to choose how, when and where we get our assistance is at the core of independent living.

Community-based living means that people with disabilities can live, interact and receive attendant care services while remaining in their home.  So when Pennsylvania legislators talk about cutting those attendant care services which I depend on in order to work, they are taking away my right to live independently.  The funds needed for these programs are not charity.  Matter of fact, more funds need to be directed away from nursing facilities and toward much less expensive community-based living programs. 

So remember, independent living isn't about circumstance, it is about choice.

The MDA Telethon

It is Labor Day weekend, and many people will watch and take part in the MDA telethon. I am a client of MDA, and it does indeed help families deal with neuromuscular disease.  The research efforts toward prevention, cure and treatment of these diseases are indeed important.

Some people with disabilities (PWD) believe Jerry Lewis hurts the cause for the rights of PWD.  I’d like to try to put this in perspective, and discuss an important subject; the notion of victimization.

First, we need to remember that Jerry Lewis comes from an era when PWD were pitied, ignored and treated differently.  Those notions are prevalent among people of that generation; I saw it in my parents who had difficulty facing reality when I decided to begin using a wheelchair.  Also remember that Jerry Lewis is a performer, and the very nature of that business promotes using emotional means as a way to raise money.  So Jerry Lewis uses pity and guilt as tools to accomplish the mission of the telethon.  He treats people with neuromuscular disease as victims of a terrible disease, and implores us to feel badly and send money.  Mr. Lewis does that well!

While I agree that Jerry Lewis’s methods portray PWD as victims, I believe the telethon supports an important cause.  The methodology used is “media hype”, and that is something we are confronted with constantly.  The media portrays people with disabilities as innocent victims of diseases over which they have no control; we are portrayed as people to be pitied.  That doesn’t help our cause.  However, the worst thing we can do is act like victims.

Most PWD I know who are out in the community refuse to be treated like victims.  Because we know that doing so hinders our ability to fully accept reality.  And that acceptance is what drives us through our daily lives.  Media hype is just that; hype! 

The best advice I can think of for anyone, including PWD is this; don’t let yourself think like a victim!  Control what you can and accept the rest.  Remember, what binds us together is our common humanity.

 

Disability - A Realistic View

Amy Dunaway-Haney is the 2003 recipient of the Muscular Dystrophy Association National Personal Achievement Award.  Like me, Amy has Limb Girdle Muscular Dystrophy and uses a wheelchair.  She teaches high school spanish, and takes her teaching seriously!  Check out her Spark Enthusiasm website.  In an MDA publication, I found an interesting quote from Amy;

"We have our savings account, my husband and I, and then we have our van/wheelchairs account," she explains. "People think that the hardest part of having muscular dystrophy is not being able to be a cheerleader and not being able to run. But for me, one of the hardest parts is just being able to afford it."

"If you want to be a vital, working person or be out and about, doing your thing, it takes a lot of money," she adds. "You either have to be really impoverished or you have to be really loaded just to get around and be able to work and do all the fun things you'd like to do."

My story is similar.  In 1998, when I first began using a wheelchair full-time, I needed extensive home modifications, an electric wheelchair and independent transportation for work.  Without financial help from my state office of vocational rehabilitation, the transition and continuation of employment would have been impossible.  Even with that help, my cost was over $22,000.  My 2 boys were in their early teens at the time, and ours was and continues to be a one-income household.    11 years later, I’m in the same situation; new van, more home modifications and an expensive rehab-style wheelchair.  Even with financial help, I’ve had to incur long-term debt both times in order to pull this off.  Plus, I pay $60 per week for attendant care and all repairs to adaptive equipment; in addition to a mortgage payment well past my retirement age.

Again, Amy and I both love our work and want to continue working and remain contributory to the system.   The alternatives are long-term disability, Medicaid and fully paid attendant care; unnecessary extraction from the system rather than contribution!  As Amy said, you need to be either impoverished or wealthy just to get around.

Neither of us are complaining, but the fact is that being disabled is expensive.  The cost to society of keeping people with disabilities working is far less than the cost of the alternatives.  People with disabilities generally want to be able to pursue the same opportunities others can.  Right now, that pursuit is costly!  Systemic change is necessary.

Short-Sighted Government

Here is a letter to the editor I just released to the local paper.  I've heard it said "You don't know how good a teabag is until you dip it in hot water".  Pennsylvania legislators find themselves in the middle of a budget crisis.  Let's see what they are really made of!

Counterproductive Cuts

 

The state legislature will be considering SB 850 as a means to cut costs.  Part of that bill would eliminate the Act 150 attendant care program for people with disabilities.  That’s one of the programs that helps me and other people with disabilities remain in the community, and in many cases, in the workforce as well.  As part of the workforce, we pay taxes into the system.  It is unconscionable to eliminate programs that keep people with disabilities participating at the community level.  The alternatives are much more costly not just in terms of money, but in negative impact on the community.  The act 150 program is not charity!  As people with disabilities, all we want is the same opportunities as everyone else.

 

I would remind our legislators not to be short-sighted while addressing this budgetary crisis.  The Act 150 attendant care program doesn’t represent dollars spent, it’s an investment!

 

Michael Sporer, Board President

Northeast PA Center for Independent Living

Wisdom of an Old Dog

Back in February 2008, we adopted a 12 year old dog named Copper.  He is a wonderful old fellow who is enjoying his retirement home to the fullest.  There's a bonus for me as well; owning Copper has been instructive.  Comparing his way of living to my son's puppy's outlook provides a lesson about zealotry.

1. Copper isn't motivated by the insignificant.  Puppies, on the other hand, are motivated by everything.  Copper is  selective about his directing his attention.  He doesn't crowd his brain with the unnecessary.  We shouldn't either! 
2. Copper lives entirely in the moment.  He thoroughly enjoys his food, his sleep time, his play time and his interaction time with his human caregivers.
3. His hearing has gotten progressively worse.  That doesn't seem to bother him in the least.  Copper rolls with what life presents and isn't the least bit concerned with situations he can't change.

Three simple concepts; PRIORITIZE, ENJOY AND ACCEPT!  It works for Copper, and it can work for us.

Skills National Competition

As a follow up to my prior post, 4 students from the CTC of Lackwanna County, a career tech school in Pennsylvania, competed in the national Skills USA competition in Kansas City.  These students did very well, and scored in the top 10 nationally.  Of note here too; they had a problem with the overhead projector, and the team leader improvised and turned the laptop around instead.  They continued with their presentation.  Now THAT is impressive!  Congratulations, girls....Great Job!!

Driving with a Disability II

In my prior post, I gave you a summary overview about driving with a disability.  Today, I'd like to expand on that.

Again, primary driving controls are gas, brake and steering while secondary controls include everything else.  The systems I will be using come from 2 companies; Drive Master and EMC.  As you might imagine, there are not many companies around that manufacture products like this.  It is a specialty, and I'm sure the liability exposure, hence the cost of insurance, is considerable.  That applies to the dealer network as well.  Installing these systems requires specialized expertise, and generally the dealers offer driver training and evaluations as well as installation.  The company I'm working with locally has been doing this for well over 20 years, and they are indeed experts.  

I'll be using mechanical horizontal steering which connects to the steering column.  It can be adjusted on all planes.  Drive Master also retrofits steering boxes and rack and pinions for reduced and zero effort steering.  Among other innovative products, they offer backup steering systems as well.

I'll also be using the gas/brake system from EMC.  Their entire EMC system is called AEVIT (Advanced Electronic Vehicle Interface Technology).  They also offer secondary interface controls and "drive by wire" steering.  Their website is extremely informative.  This page gives a very nice overview of the AEVIT  driving system. 

Another very innovative company in this arena is MPD, Mobility Products and Design.  The hand control in my current van is an MPD product.  It is amazingly reliable, even after 11 years of use. 

Learning to drive with these devices is a little challenging and will require over 10 hours of training.  Mr. Keller has an older trainer van and is in the process of outfitting a new one.  You can imagine the expenses involved in such a specialty, hence the reason for the high cost at the consumer level. This is indeed a very specialized business, and the companies and dealers involved are indeed quite innovative.

I'm enjoyed doing this research.  I hope you enjoy it as well. 

How Full is your Bucket?

Today, I received a complimentary copy (from Gallup Press, Cave Henricks Communications) of the book How Full is your Bucket by Tom Rath and Donald Clifton.  The original book was published in 2004, and this is the anniversary edition.

I read the entire book in about 45 minutes.  It uses the "Dipper and the Bucket" metaphor to illustrate the power of the positive, and it does so magnificently!  It is a deeper study of the words in the Dale Carnegie book How to Win Friends and Influence People, "Be hearty in your approbation and lavish in your praise, but do so sincerely".  It seems our entire society is rooted in attempting to change behavior through negative means.  This book is a shining light of change.

I will be purchasing this book for my co-workers.  And, I would recommend it to everyone as well.

Driving with a Disability

I'm going through a process of a new wheelchair, new van, and home modifications to accommodate my current and future needs.  Today was interesting!  Unlike my current situation, I'll soon be driving from the wheelchair.  And in order to accommodate my needs for the next 10 or so years, I'm converting to an electric brake/accelerator system, and horizontal steering with zero effort.  These are known as "primary" controls.  As a result of the change in primary controls, the "secondary" controls will change too.  I'm looking at a computer controlled modular system to handle things such as lights, turn signals, gear changes, wiper controls....all of the secondary functions. 

The picture above left shows the hand control I currently use (past 11 years).  It is called a right-angle hand control, and is basic and simple.  The new system is similar, but involves electric assist and is mounted to the immediate left of the driver at arm level.

Today, I did some real on-the-road driving using this system in a training van.  Jim Keller, owner of Keller Wheelchair Lifts, is the driving teacher and an expert in the systems available today.  After a series of adjustments, we developed placement criteria for equipment, and I got to drive with the controls.  It went very well!

If any of you readers are going through something similar and you are apprehensive, please do get in touch with me.  What I'm doing comes down to one mental aspect; the ability to accept and embrace change.  I've learned the hard way, folks.....NEVER let fear lead your life and learn to love change.

New Blog

Check out my new blog, Education Perspectives.  There is an additional link to it at the top of this blog.  Fresh Perspectives is alive and well, but is reserved for personal entries.  Education Perspectives is about an issue I'm passionate about.

Timeless Music!

Some things are just timeless. I'm a fan of Eric Clapton, and I love this rendition of "Sweet Home Chicago". Check it out......

GM - A Lesson Learned?

General Motors is now officially "Government Motors", no longer listed on NYSE.  The reasons are obvious...GM remained an old company whose management style remained in a 1950's mindset.  In the 1980's, W. Edward Deming predicted what is happening now to GM and other companies in the same situation.  And Bob Sutton clearly reflected this mindset in a blog post.

When will we learn?  The learning is happening in the auto industry at Ford Motor Company.  They operate lean in much the same way as Toyota, and they have trimmed down their vehicle offerings.  Ford is now setting the pace for American business.  They are learning to compete globally; GM never learned that! 

Having spent 30 years in public education I can tell you, however, that American public education will learn more slowly.  Education, and more specifically career/technical education, needs to be reflective of the direction industry is taking.  That happens slowly because public education is an extension of the government bureaucracy that created it.  Education remains in the "top down" management mindset where the customer (student) isn't always the priority.  But in this time of unprecedented change, I see a glimmer of hope for public education....the mindset is beginning to change.  Because for public education to survive, it must change!  I hope to be part of that.

Memorial Day

Today, we commemorate the men and women who died while in military service to our country.  These people faced the ultimate fear and paid the ultimate price!

My Dad, who died several years ago, served during WWII in the Army Air Corps.  On a few rare occasions, he spoke of some of his experiences, and of comrades who paid that ultimate price.  Most people who witnessed the bloodshed never spoke of it again.  There is nothing more devastating than war.

Amid all of today's turmoil, corporations bigger than government, an economy in trouble because of greed, a seemingly complete lack of ethics among elected officials, we all need to remember those who died for us as well as those who survived.  No matter our political views, we need to be thankful for the men and women who served before and who serve now.  

Today, I remember and I'm thankful!

In Pursuit of Elegance

Matt May's book, In Pursuit of Elegance: Why the Best Ideas Have Something Missing, is being released tomorrow.  I read an advanced copy a few weeks ago, and could not put the book down!  Matt traveled the world to find cases where something was made to be elegant through subtractive means.  He strategically uses stories to drive home his ideas. 

This book is incredibly easy to read, even though it tackles some deep subject matter.  Check out his blog by the same name.  Mark Graban of Leanblog.org has posted a video podcast with Matt.  This work is entirely different than any business related book I've ever read.  It is a book about elegance written elegantly.