Forging Ahead...damn the torpedoes.

In my last post I left some cryptic references to discrimination while riding my Segway...time to elaborate.

I don't pretend to understand the psychology of this but it's pretty obvious that people--(at least Americans that I have observed--including myself) want disabilities to be obvious if we are to sympathize. How many times have YOU given an evil glare to somebody getting out of a car parked in a "disabled permit required" slot because they "appeared" to be able-bodied? I've done it. I'm learning to resist. Appearances can be deceiving.

Riding a Segway multiplies this tendency exponentially. I have had total strangers in the grocery store grumble directly to me "what gives you the right to ride that thing into this store" or "What's your problem? Are you too lazy to walk?" Really--these are direct quotes...one woman even said to me "God gave you legs, why don't you use them!"

Then there was the time I went to Disney Downtown with my visiting 2-year-old nephew and family so he could play in the lego playground. No one said anything for the first hour we were there but suddenly a manager (riding a Segway) showed up and told me I was not allowed to have a Segway on their property--"too dangerous" he said from his perch on HIS Segway.

At the time I was sitting on a park bench so I suggested that I would not ride it any more until we left the park which would probably be shortly anyway. He replied "'Oh no--you may not ride the Segway out of the park, you must walk it out of the park immediately." I said--"I can't walk." He said--"We will get you a wheelchair." Furious, I got on my Segway and said "What are you going to do, tackle me? We are leaving!" By this time he was accompanied by 2 security guards and another manager, my family had gathered and we were drawing an audience. I started forward with our group slowly heading toward the parking lot. The guards and managers flanked us and escorted us to our car like we were criminals. What started as a fun day at a Disney Park ended on a very sour note.

Then there was the time I tried to go to SeaWorld with the same visiting relatives. This time I called in advance to make sure the Segway would be OK. We arrived, bought our tickets, entered the park and I was immediately escorted to "guest services." There they told me I had to get off the segway and they would loan me a wheelchair, or I could rent a 700lb humongous scooter which I had never driven before and could definitely hurt someone if you drove over their foot or bashed into them from behind. (The Segway weighs only 70lbs and stops automatically if you even come close to bumping anything).

OK so theme parks were out. Grocery stores, other stores, restaurants and bars, were all individual calls--hit or miss--some let me in, others wanted me to park the Segway outside (right...that will work). This had a very negative impact on me--and my husband/caregiver. He would suggest that we not take the Segway as we could be turned away and I often agreed. So I found myself using a wheelchair for most outings other than my immediate neighborhood.

You know what they say..."use it or loose it." The more I sat down, the harder it was to stand up. So I started thinking about selling the Segway. That was about the time of my last post which is why it has taken so long to write this segment...I didn't know how it was going to end.

I guess none of us know how it is going to end but I can pretty much tell you one thing for sure. If you give up, it's going to end sooner than later. Last Spring while riding the Segway in the neighborhood, cutting across a dark lawn (really smart, I know), I hit a tree stump and flew off the Segway over the handle bars. None of my companions were touched but I broke 4 ribs. While healing I could not ride the Segway at all and fear combined with weakness from disuse f my legs combined with all the unpleasant experiences out in public with the Segway almost permanantly sidelined me.

I say "almost."

While looking on Craigs List a couple weeks ago to see how much I could get for a used Segway, I had a cold nervous thought. Am I giving up? That's not a bit like me. Are the jerks and blue meanies of the world going to win? What's going on here? Of course I am weaker! I haven't used "it " for months! Stand up for more than 5 minutes and I'm winded! At this rate I won't be able to even transfer from a wheelchair to the couch before long! GET A GRIP!

So now I am on a mission again. Every day I will stand and walk with the walker--no matter how hard it is. I will do it for 10 minutes, then 20 minutes, then a half hour! In only a week I am already up to half an hour. I will practice stepping up on my Segway and stepping off again, EVERY DAY. And I will ride it again through the neighborhood by Spring. And if someday I can't, it won't be because someone else told me I wasn't allowed to, or because someone said I shouldn't. It will only be because of real disease progression--at which point I will take on the next obstacle...HOORAY!

#7 "The Truth about Mobility"

It IS everything it's cracked up to be! Getting from point A to point B is a huge part of life. Most people don't really think about it at all (unless you're 92 and someone is threatening to take your license away from you). But for the rest of us, it's just a question of which transportation to use.
Feet: great for your heart, cheap, no need to find the keys, easy to daydream or browse along the way, really good for getting around your house and yard or over to the neighbor's for whatever.
Bike: fun, also cheap, refreshing if it's a nice day, good for the environment.
Car: Ok admit it. Everyone should own a car. (Ok ok. Maybe not in NYC or SanFran but just about everywhere else.) Go to work, pick up the dry cleaning, groceries, meet friends for..., and maybe best of all--shop! "When the going gets tough, the tough go shopping."

So when my feet wouldn't take me, the bike tipped over and the State wouldn't renew my license, I developed a serious case of stay at home blues. One day, at an MS Society annual meeting, a woman sitting at my table stood, stepped on her Segway, and in a flash left the room. EUREKA, I thought. I gotta have one of those things! And I will be forever in Wendy's debt for showing it to me. Everyone with MS should have one! This is AWESOME! Three short weeks later I was proudly zooming around my neighborhood on my "man-magnet."

Advice to all women (physically challenged or not): Want to attract male attention? Buy a Segway. Guys are drawn to them like big flat-screen TVs.

For more than 5 years it has taken me on all sorts of adventures including to the mountains in Mexico where I bumped along narrow sidewalks or cobblestone streets to the astonishment of onlookers (including the local police who took several days to decide it did not belong on sidewalks and banished me to the streets.)

But being a trail blazer has challenges. Many officials in gov't and business prefer the status quo. So within weeks of discovering the segway, I also discovered the slimy underbelly of discrimination.

"Discrimination. Discrimination is the active denial of desired goals from a category of persons. A category can be based on sex, ethnicity, nationality, religion, language, or class. More recently, disadvantaged groups now also include those based on gender, age, and physical disabilities."

Who would have thought!?

Wouldn't everyone be happy to see a disabled person cleverly disguised as able-bodied? Happily going about their business? Hmmmm. Maybe not.

More pics from San Miguel de Allende, Mexico--
beautiful but not too accessible. Some days I stayed behind in our gorgeous rented house while the rest went out exploring. Even with the Segway, hills and cobblestones can be a bit tiring--but oh so much fun and oh so worth the trip!