PERSONAL TRANSPORTATION

One of the more frustrating things about becoming disabled is the loss of independent transportation. For myself, I was very blessed to have many friends and family members who offered to help me get out & about.  Being a teenager, it was important for me to attend every football & basketball game I could.  But, Momma raised 4 very independent minded boys (OK, Rowdy, Loud, Obnoxious, Hard Headed & Unruly may also have been used to describe us).  At any rate, I REALLY wanted so much to get right back out there & drive again.

 I have to admit that in the late 60’s & early 70’s architectural barriers usually prevented independent integration in the activities at hand (but that’s a whole different topic of discussion).  I worked very hard to become as independent as I could be.  Being independent minded, I was able to let my needs be known, so I could continue being active in the community.  But I didn’t REALLY feel independent until I got behind the wheel, again.

 Mobility Equipment Dealers Association (MEDA) came up with the idea of sponsoring the National Mobility Awareness Month, as described below:

Starting this year, the month of May is recognized as National Mobility Awareness Month. The purpose of this declaration is to bring attention to and show the world how people with disabilities can live an active, mobile lifestyle. Supported by national spokesperson, Mike Savicki, and utilizing the National Mobility Equipment Dealers Association network of members, the goal of National Mobility Awareness Month is to educate the public that:

 • People with disabilities constitute the 2nd largest minority in the United States.

 • Over 18 million people in the U.S. and Canada have mobility issues.

 • 6 million of those are veterans.

 • There are mobility equipment manufacturers, dealers, driver rehabilitation specialists and other professionals in your community dedicated to improving the lives of people with disabilities.

 • Automotive mobility solutions are available for people with disabilities enabling them to enjoy active, mobile lifestyles.

 One problem cropped up.  There were some many people with disabilities who had the need to acquire or upgrade their accessible vehicles that MEDA’s server was overloaded the first day of April.  So they upgraded their server and that crashed, too.  All month long, their server failed on a daily basis.  Although MEDA sought to inform the public that there are available transportation resources in the community, the disabled community has (hopefully) educated NEDA that the financial resources to PAY for accessible transportation is an even GREATER need. 

 Being disabled comes with a huge price tag.  Above & beyond the normal daily needs that we all must meet (housing, food, utilities, etc.), many people with disabilities many also have personal care expenses, personal mobility equipment, medical equipment, etc (as well as the repair cost of maintaining the special equipment).  All those additional expenses often overshadow the need for accessible transportation (in terms of daily survival).

 In looking at some the other people vying for the 3 new accessible vans, it is very clear to me that I am by far NOT the most needy contestant.  I fought the good fight.  I refused to play the pity card or sacrifice my self-dignity for the sake of a new ride.  In scanning the other stories, I see that there are MANY people with WAY more votes than I.  I’m OK with that (although I was hoping to break the 500 mark).

 I have always said that everyone has a story.  I encourage everyone to read some of the stories of my brothers & sisters with disabilities.  Their strength in facing their own challenges will surly encourage us all to give it our best, as we face our own challenges, no matter how large or how small.

http://www.nmeda.com/mobility-awareness-month/local-hero-contest

peace,
steve

Isn’t That SPECIAL!

Over the past 43 years, people have reacted to me in many ways. The two extremes are those who seem to treat me as if I don’t exist, and those who place me on a pedestal.

There are times when I’m at restraint, the waitress looks to the person I’m with to ask what I want. In these instances (and others in the community), I regard them as opportunities to
educate people. I don’t mind people staring at me as I open doors at the Mall or other stores. In fact, it’s kind of fun watching people (especially little old ladies) freak out as I sit there in my wheelchair and hold the door for THEM!

When I’m treated like I’m special, I become a little uncomfortable. When they use terms like “HERO”, well, I’ll just say that it’s not a word that I’d use to describe myself. I just try to be an Ordinary Average Guy.

Even though I'm a little uncomfortable with the "HERO" label, there is a contest to give 3 new wheelchair accessible vans to "Local Heros." My current van is starting to become unreliable... got stuck last week at the bowling alley & had to pay $60+ for the 10 mile accessible cab ride home (PLUS $50+ to fix the thing PLUS I gotta take it in again next week to fix something else), but it was late at night & you do what ya gotta do. Anyway, vote for me every day the rest of the month and use Promo Code: 995, 818 or 989 for extra points! Vote once every 24 hours through the end of April (try each code once, then vote without a code). Help me get a new vehicle!!!

AND SPRESAD THE NEWS!!!

thanks,
steve

Here’s some info about the contest

National Mobility Awareness Month National Mobility Awareness Month is a proclaimed month that will be celebrated throughout the month of May. The purpose is to educate the public that people with disabilities constitute the 2nd largest minority group in the United States. Over 18 million people in the U.S. and Canada have mobility issues.

This website is where we share the stories of people with disabilities who are dealing with and overcoming their mobility challenges. We are also asking people to submit their stories to be showcased by national and local media over the upcoming months. Favorite stories will be voted on by your friends, family and peers, and the winners will be awarded a new customized wheelchair accessible vehicle.

http://www.nmeda.com/mobility-awareness-month/heroes/missouri/kansas-city/549/steven-hurst

Here’s something that a friend wrote about me & my wife when she forwarded my email asking for votes:

Hello sweet friends and family! Please take just a moment to read this important message and help my dear friend Steve win a new wheelchair accessible vehicle (which he NEEDS). He might be uncomfortable with the label "hero" for himself, but I am not. For those of you who do not know him...Steve and his wife Luanne are two of the most amazing individuals I have had the pleasure of knowing. Steve was paralyzed at the age of 16 and has made it one of his lifelong endeavors to teach others that a person with a disability can (and should) be just like everyone else. He married Luanne who has got to be an angel among us. She is like no one else I know! Luanne works at TLC, a Children's Therapeutic Learning Center. They adopted not one, but two children with developmental disabilities, Mark and Michael. Years ago I was lucky enough to work with both of them as a Life Skills Teacher (mostly worked with Michael though) and I learned as much from them as they hopefully did from me. Sadly, Mark passed away a handful of years ago due to complications of lifelong health issues. He is missed dearly by us all. Michael (who is now 26 I believe), works part time at Petsmart in Kansas City and we talk regularly. He is part of our family. They all are and we love them whole-heartedly.

Together, they live quite a life of service - so giving and kind and are always there to lend a helping hand to others. Steve is such a kind, considerate, selfless man and quite the comedian! I am blessed to have him in my life and our family's lives. I wish this was more than a contest for a new van, as he deserves so much more. Steve and Luanne truly shine their light in this world and are an example for us all. I know someday he will be rewarded tenfold though for all the love he shares.

Please take just a second out of your day and click the link, vote for Steve and enter Promo Code 989, 995 &818. http://www.nmeda.com/mobility-awareness-month/heroes/missouri/kansas-city/549/steven-hurst

Also, it would mean the world to me if you would please share this email with all your friends and encourage them to vote as well. I will be posting it on Facebook too which is another
great way for us all to share it. I would love to send this message around the world and get him that van. It is just a small fraction of the appreciation he deserves for being such a wonderful person!

Here is the link again: http://www.nmeda.com/mobility-awareness-month/heroes/missouri/kansas-city/549/steven-hurst

Thank you!

Love,
S---- K----

My Bubblebath

OK, I wanted to post new stuff periodically, but here (again) is something I wrote a few years ago.

January 19, 2002

While watching the TV show Friends, this past Thursday, I saw Chandler learning that a bubble bath can be a nice soothing way to pamper himself. On Saturday, like Chandler, I found myself lying peacefully in my tub. My favorite Classic Rock and Roll station was on the radio. Michael was at his Saturday morning Karate class. Mark was in his room watching one of his train videos. I was able to just lay there with the bubbles caressing my soft supple skin... feeling my muscles relax in the warm bubble bath. Wow, it has been such a long time since I was last able to take a long soaking bubble bath... I didn’t realize how much I’ve missed such pleasure.

Usually, I transfer from my wheelchair onto my padded, though not very comfortable, tub bench. Since I have no sitting balance, I have to hold on as I use my hand held shower. Indeed on this day, I transferred onto my shower bench to take my shower, when snap!... The back rest broke off and I fell straight back onto the bottom of the tub. Luckily, the part of my body that hit the hardest was my head... and we all know how hard of a head I have! LuAnne had just come into
the house from dropping off Mike at Karate, when she heard a loud crash. She opened my bathroom door to see me laying on the backrest in the tub, and my legs on the seat of my shower bench... what a vision. LuAnne asked if I got knocked out... if I did... I couldn’t remember... or... something like that.

Getting the backrest out from under me without cutting me on the jagged edges of the broken aluminum tubing, "rolling" me out of the tub, scooting to the bed, hoisting me on cushions from the couch, and "rolling" me into bed was a fun challenge that all quads should experience once in a while. But, I’m not sure that I’d recommend getting into a tub that way. All in all, I think
I’ll try to avoid the nice soothing bubble bath, and keep taking my boring showers.

postscript - After I broke several of the cheap aluminum bath benches, I started looking for better made ones... didn't find one. When we were kids dad often took our toys & other broken stuff to work & bring them home fixed. Dad even had a wheelchair lift made from "spare parts" at work. So my brother, Jerry, took "spare parts" from work & had some buddies help build a stainless steal bench for me (with adjustable legs & everything). Then he had a buddy who did upholstery stuff for boats make the padded seat & backrest. Now I have an awesome, durable & easier to transfer onto bath bench.