Wednesday, March 11, 2015

The power of example


Growing up I wanted what most people want, to go to college, start a family and have a successful career.  However, because I was growing up with muscular dystrophy, it was hard for me to imagine that that type of future was possible.

Along the way, my friends and family tried to support and encourage me by saying that despite my disability, I could still fulfill my dreams.  As much as I appreciated their kindnesses, it was hard to believe that what they were telling me was true.  In large part, that’s because I never saw anyone “like me” enjoying those types of successes.

We take the power of example for granted.  After all, many times it is only after seeing others succeed that we are able to develop the confidence within our self needed to achieve our own dreams.

We celebrate the firsts – the first man to walk on the moon; the first woman to win the Nobel Prize; the first anything (minority, gay person, disabled individual, etc.) to do something extraordinary.  We do so because their example empowers and inspires us to believe that we too can be great.

On the flip side, not seeing anyone “like you” accomplishing great things sends the opposite message.  It tells you you’re not good enough and you never will be because people like you aren’t meant to make it in life.  It’s a terrible and debilitating message.

Despite my hardships I did go to college, I got married, established a family and carved out a successful career.  In doing so, I’ve been fortunate to lift others with me through my example.

It’s an odd feeling when you find out that your example has inspired someone or given him or her a strength they didn’t know they had.  It’s something that I’ve heard at different times throughout my life and it always fills me with gratitude and humility.

I’ve never tried being positive or having a good attitude with the intention of inspiring others.  I have however, consciously decided to live as full and joyful a life as possible.

The way I see it, I can be upset and bitter about my circumstances or I can choose to be positive; either way I’m still going to be sitting in a wheelchair.  Another way to look at it is like this: I can let life pass me by or I can lead the parade.

So here’s to finding the example that gets you there.  Better yet, here’s to being the example that lifts others.


Tuesday, March 3, 2015

All about the benjamins


I speak to a lot of different groups; doctors, families, policy makers, etc. but my favorite groups to address are disabled youth.  And when I talk to them, I tell them one thing: GET RICH!!!

Do I say, “be strong, be positive and chase down your dreams?”  Sure I do.  And that’s all well and good, but nothing is more important than telling them to chase down that almighty dollar.

My message goes a little something like this:

“When compared to the disabled, ‘walkers’ (the term I use to describe able-bodied people) get to live life on the cheap.  It’s extremely unfair (but so is having to live life with a disability).  Accept your reality or it’ll run you over.”

It sounds bitter.  It’s not.   It’s more of a scared straight thing.

Consider the following:

My walker neighbors take the bus and metro to their respective jobs downtown.  They pay $10.00 round trip.  Travel time is approximately one hour each way.  I have to use MetroAccess (the “accessible” public transportation service).  I pay $14.00 round trip.  Travel time can be two hours each way, the drivers are often rude and the service is very unreliable.

What about personal transportation?  A walker will pay $30,900 for a 2012 Toyota Sienna.  I bought mine for $60,000.  The difference?  Mine has a small ramp and is missing the middle seat (incidentally, the ramp broke last week and it cost me $1,000 to repair).

Medication?  Walkers pay $5 for a bottle of Tylenol to reduce pain and fever.  I pay over $150 out-of-pocket each month on prescription medicines to stay alive.

Attendant care?  Walkers dress themselves.  The disabled pay attendants $18 per/hour to pull their pants up (in addition to being expensive, finding someone good takes a miracle.  Casey does it out of the goodness of her heart, not for a paycheck – though she’d take one if I could afford it).

Let’s not forget about the $45,000 hospital bed (not a joke), my $23,000 wheelchair, the two different breathing machines and my slew of durable medical supplies I have to order on a monthly basis.

So, yes, I tell those kids to get rich – because my life, and their lives, costs significantly more to live than yours.

You’ve heard of “Get rich or die trying.”  Well, for the disabled, the options are fewer, so, for us, it’s really more about getting rich or accepting having to live off the government for the rest of our lives.  It ain’t pretty, but it is what it is.  And they need to know that.  Because for the disabled, there’s really no such thing as in-between.

So I tell them to aim for the dollar sign and then explain that in order to hit their mark, they’re going to have to push beyond their limits, get an education and tackle work with ferocity, fervor and passion.

And that is what I call getting it done.

Then I remind them that even though the financial scales are tipped ridiculously high against them, they can smile because at least they still get the benefit of good parking spaces.

See, it's not all bad.