Fresh Perspectives

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

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. 

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.

Bad Rap

We have all heard the stories about the health care professionals who don't seem to care.  I've been going through a process of a wheelchair fitting, a driver evaluation, and a fitting for a foot brace.  Hence the reason for my hiatus from blogging.  But my experience with health care people involved has been gratifying!  Every person I've dealt with, including Occupational Therapists, Physicians, Nurses, Receptionists and support people, have all become advocates for me in this transition.  The person who engineered my wheelchair and complex seating told me that the wheelchair "belongs to me"!  He takes every problem and request I have personally.  Without these advocates, this transition would be difficult at best.

I see the same advocacy among people with disabilities.  We watch out for one another!

Remember that health care professionals have a very difficult job.  Treat them right, because they perform a service none of us could live without.  And sometimes, they get a bad rap!

Panic Button Syndrome

Several weeks ago, I had an overhead patient lift system installed in my home.  The company that provided it gave my son (attendant) and I a one hour training on hooking up the sling and using the lift.  The vendor did an excellent job, and I became comfortable using it with the trainer at the controls.

A few days later, we decided it was time to try it out.   There was only one problem; we failed to remember exactly which loops hooked where.  We took a guess and of course, our guess was wrong.  I was lifted out of my wheelchair, and was sprawled out like an unfolded lawn chair!  When they lowered me onto the bed, I became forced to a lying down position, and we ended up unhooking the sling and forgetting about the whole process.  Pardon the wording, but the episode pissed everyone off!  That day, I was a bit despondent and imagined the worst case scenario; we installed a very expensive system and it doesn't work.  I spent the entire day in that negative mind-set.

It's funny how a night's sleep can change your outlook.  The next day, I remembered the words of Dale Carnegie in How to Stop Worrying and Start Living.
How to Face Trouble:
1.  Ask yourself "what's the worst that could possibly happen,
2.  Prepare to accept the worst,
3.  Try to improve on the worst.

That formula is so simple, yet it's magic when applied.  I changed my mind-set and remembered that I would have a wheelchair seating expert at my house within a week.  When he arrived, I asked him to assist us in hooking the sling, which he gladly did as part of his visit.  Of course, the system worked as intended.  This time, we marked the loops.

As I look back on the situation, I realized that I was bitten by Panic Button Syndrome.  For me anyway, my first reaction is generally to carve out the worst case!  But after reflection, I found out that my first reaction was entirely out of proportion with reality.  I believe many of us have the same tendency. 

So now, I try to remember Carnegie's words and let rational thinking into the process when things go wrong!  Hopefully, I can get a handle on Panic Button Syndrome. 

The Many Faces of Advocacy

Ad.vo.ca.cy - The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.

Being involved with a disability-related organization, I'm sometimes referred to as an advocate.  And yes, sometimes advocacy is the dictionary definition; active support.  One of the most overlooked aspects of being an advocate, however, is helping one-another individually.  To me, the aspect of peer counseling and involvement with others who have faced a similar situations is what Centers for Independent Living are all about. 

The highest form of advocacy is other-centered.  I love the commercials about "doing the right thing"!  Advocacy at its finest...... 

Shared Humanity

This TED talk simply blew me away!  I couldn't have said it better.......