An Unnecessary Tragedy: RIP Daniel James

I realize this blog is usually pretty light-hearted, laid back, irreverent, would one say...snarky even? But there are times when I believe some serious reflection is in order. I read an article today that deeply disturbed me, and I would love to get the Wheel-World fans' (are there any of you left since I've so recklessly abandoned you?) opinions on this.

The headline goes, a 23-year-old British rugby player, Dan James, was injured and paralyzed from the chest down. He was (obviously) distressed by the injury, and this week his parents took him to a euthanasia clinic in Switzerland where he (we can assume) committed assisted suicide.

Now, most of my information is coming from the UK Times Online, so I can't vouch for its veracity or objectivity. Apparently, his parents, who are under investigation in the UK because there, assisted suicide is illegal, drove him to the facility in Switzerland and supported his "decision."

The UK Times quotes his mother as saying, about the social worker who reported her and her husband, "I hope that one day I will get the chance to speak to this lady and ask if she had a son, daughter, father, mother, who could not walk, had no hand function, was incontinent, and relied upon 24 hour care for every basic need and they had asked her for support, what would she have done?"

My first thought is, I wish she had asked my mother that question. But my second thought is that I cannot judge Dan. He underwent a traumatic, life-changing event that not only stole his ability to be independent and his life as he knew it, but it also stole what was his passion, talent and life goal (i.e. Rugby). I understand all of that, and I understand that I could never understand what it would be to have a severe disability forced on you as a young adult.

All of that being said, could his parents really have just accepted and assisted his "decision"? Would we praise parents who would support their child's suicidal tendencies if that child suffered from severe mental illness (i.e. depression, alcoholism, or bipolar disease)? What if an individual was severely depressed and distraught by a traumatic event (i.e. loss of a child or spouse, or survival of a rape or attempted murder)? Would we condone allowing that person to "choose" suicide - would we support and advance that "choice"? It is a truly difficult subject to broach, but I can't help but feel uneasy about this tendency we have to so fear and loathe physical injury and disability that we would think that one might be better off not living.

These are serious ethical dilemmas. I understand that euthanasia is a favorite dilemma of the amateur philosopher, and perhaps under some circumstances, there is reasonable room for debate. But in this case, Dan was not terminally ill. He was not choosing to be taken off of artificial life support. He was paralyzed and he was in pain and he was depressed. If I may be so bold as to have an opinion on such a sensitive and personal matter, I think this tragedy is a sad commentary on our society's view of disability. For his family to say - and accept - that "he was not prepared to live what he felt was a second-class existence," is chilling.

My apologies to all, but I don't think my existence is second class. My only hope is that someday more of the rest of the world will agree.

RIP Dan James. May God please help others in similar positions to see hope through the despair; and may the world see that disabilities are not tragedies, but trials over which we can triumph.

Wheel World Season 2: New York City!

If anybody decides to dust the cobwebs off of the Wheel World website, I suppose I owe you an explanation. The best that I can do is an update. Since last we talked (or rather I talked to you and you faithfully read without interjecting), I was in the capitol city wondering why 20 years of schooling hadn't prepared me for the big test and why I was actually learning, from scratch, in a two-month crash course, all of New York State's laws instead of celebrating my scholarly grand finale. I was also heckling hecklers in the streets, telling you wonderfully embarrassing stories from my youth and not so youth, and generally pontificating on how wonderful, insightful, unique, and yet humble I was.

The main thing that has changed since then, is I passed the NYS bar exam (whew), started working full time double plus, and forgot how I was really going to cash in and become famous....as a blogger! So my apologies to all, and allow me to try to earn back your readership, one post at a time.

And with that, welcome to Wheel World Season 2: New York City!

Speedy Gonzales: Part Two

Imagine walking down the street. You see something odd, or different, or perhaps just amusing. Maybe it's a girl with a crazy mohawk. An elderly person jogging. Or - even more shocking - a person traveling at a brisk rate in a wheelchair.

What would you do? Would you scream? Would you faint? Would you take pictures with your camera phone? Would you yell out to your spouse and family and everyone else in your 20-foot radius, "Look! Can you believe it? A mohawk! That old geezer can really move!! SPEEDY GONZALES!!!"

I live downtown, and there are lots of colorful characters here. Every day the same guy on the corner puts down his liquor bottle to yell to me as I pass, "I'm gonna marry you someday!" These things do not phase me.

But it positively stuns me that average, polite-seeming tourist families, who surely shy away from talking to most of the people roaming the downtown DC streets, feel compelled to yell absurd things out at me.

I have talked about this before when I discussed the "Speedy Gonzales phenomenon" in my first Wheel-World post. Well, just in case any of you suspected that I have been exaggerating, or perhaps using the art of fable to make my points, I have a third-party-verifiable account of another occurrence from this past weekend.

I was going to see a movie with one of my best college friends. He and I had just crossed the street, and we passed a tourist family who up until that point had been minding their own business and enjoying the sights. Then, the mother turned to me abruptly and screamed out, "Look--Speedy Gonzales!" She was clearly speaking to her husband and kids, but we heard her since she was standing right next to us and yelling.

My friend looked at me, his mouth gaping open. "I can't believe that just happened!"

"What? Oh, yeah. That happens all the time," I said.

Those encounters always annoy me, and I always have fantasies about yelling back at people.

In my mind:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tourist Lady: Oh my Gosh! Look kids, SPEEDY GONZALES!

Me: Excuse me, you talking to me?

Tourist Lady: Uh, hi. I was just joking.

Me: Yes, you do look like quite a jolly woman.

Tourist Lady: Huh?

Me: And I really like your muumuu. Very stylish. Have a good one!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

But instead, we just moved on, saying nothing. Nonetheless, I was seriously annoyed. How rude and uncouth! It's only a matter of time before unleash a little bit. Not to worry, I'm not talking about "going dentist" on them, just maybe a dry line or two.

So if you see me, and you just can't control the urge to call out, "Speedy Gonzales," beware. One of these days I'm going to bring it right back.

Thank you

As somebody who is constantly asking others for help, with pretty much everything, I am generally appreciative of the connectedness of the world and the importance of many different people in my life. On the other hand, I think that I can also take for granted the dance between myself and all of the people around me who support me. I can forget how incredible it is that everything has fallen together as it has. People enter your life when you need them, and this adage has been proven time and time again with each major challenge I have faced.

When I was born, no one knew what was wrong with me. In fact the doctors had no idea there would be any complications, and since my condition is so rare, nobody could diagnose me. I have arthrogryposis, which occurs in roughly 1 in 3,000 births. There is remarkably little information on it. Actually, when I was a kid, my parents explained it in such vague terms (because there is little to tell), that I became convinced for years that I was terminally ill but nobody wanted to tell me. In reality, arthrogryposis just refers to a condition where something (and it is still unknown exactly what) impedes the development of skeletal muscles in a baby before birth. This causes some stiffness and joint deformities, in addition to the underdevelopment of arm and leg muscles.

Basically, when I was born, among other things, my legs were turned completely around and bent up so that my feet were against my chest.

My mom's obstetrician told her that I would never be able to function normally and would probably die within a year or two. Why should she subject herself to such difficulties? There was a state institution to care for severely disabled children. She and my dad should send me there and move on with their lives.

"Gee, thanks Doc," I said. Or at least I would have if I could, but I was a newborn. Thank goodness I got my common sense, stubborn tendencies, and general disdain for naysayers from my mother!

She fired him, and another doctor referred us to a specialist in Seattle. I've always known this, but it really has just hit me recently. This specialist literally changed my life. He performed nearly a dozen aggressive surgeries before I was two years old, effectively straightening out my entire body. Orthopedics is like mechanical engineering. We're not talking about mixing chemicals, administering shots, or mending blood vessels. He broke my legs and turned them around. He ripped and stretched tendons to loosen up my joints. Basically, he had to tear my little infant body apart and put it back together again. That takes some serious guts. But if it weren't for him, while I would probably still be active and living life, I'd just have to deal with some serious deformities in addition to everything else.

Someday, I would like to think back and try to remember more of those people who impacted my life. There are so many people who did big and little things. There was the childhood friend of my grandmother who let my parents and I stay with her and her husband during all of my surgeries. They would pick me up at the airport and take care of me when I had to fly up alone for follow ups.

I sometimes get so caught up in the minutia of my current self-centered life, that I wonder..am I neglecting my own duty to help others? I usually just assume that the opportunity hasn't presented itself. Is that just a weak excuse for not seeking those opportunities? Have I turned away from situations where I really could have helped?

I just think that sometimes, we who have disabilities, or who have otherwise been significantly impacted by other people who've periodically entered our lives, should not forget them. And we should keep our eyes opened so that when the moment comes when we fortuitously enter another's life who needs us at that moment, we won't let them down.

Wheelchair Joke of the Day

Here is my fabulous video find of the day. It combines four of my favorite things: Republican politicians (I say that completely tongue out-of-cheek since I am a Republican so don't get the wrong idea), old Senators, off-color-but-funny-jokes, and paraplegics. Seriously, what more can you want?

Here's the scoop. Senator Arlen Specter (R-PA) won DC's annual "Funniest Celebrity in Washington" competition the other day. Other blogs were focused on his Viagra jokes, which were undoubtedly funny. When I watched the video for myself, I appreciated his small jabs at former colleagues and friends, laughing politely when it seemed appropriate. Having worked in the Senate before, I still have a strong polite-chuckle impulse. Then, right at the end of the video, he told a hilarious joke--focused on a guy with a disability. I loved it, and had to post it! The joke starts at minute 8:00 (or -2:05) on this video. I don't know about you, but for a Washington celebrity (i.e. politician) I think he is pretty darn funny. Now if we only could get him to do a bit of his standup routine at judicial confirmation hearings...

In Defense of My Vice(s)

I've been known to rave about a fellow wheelchair blogger out there, who I mentioned in some previous posts, Mark Smith. He does make some interesting observations, which I've noted in the past. That being said, his latest I must vehemently disagree with. In "Explosive Combinations," he shakes his head in disapproval at wheelchair-users who smoke, and more astonishingly at those who drink alcohol and caffeine. Sorry Mark (both for my disagreement and the pun that follows), but this time you're off the mark.

Let me start by acknowledging that smoking is bad for you. I am not a smoker, but obviously, smoking has been shown to have devastating health consequences. Even more importantly, very few people are "social smokers." You don't often meet someone who has a cigarette once a week, or month for that matter. In other words, if you are a smoker, you probably smoke a number of cigarettes per day which is what makes the habit dangerous.

On the other hand, I am a passionate coffee-drinker and a committed social drinker. No, I do not hide whiskey under my mattress and slip a swig before heading out to work or class in the morning. "It's Five-O-Clock Somewhere" isn't quite reassuring enough for me to rationalize morning drinking. I usually max out at two coffee cups per day. But I must have my coffee in the morning to get me off to the right start, and I find there is nothing better than a nice glass of wine in the evening--or for that matter, a couple of cocktails with my friends on the weekends. These things make me happy.

I do not think that drinking coffee or alcohol demonstrates, as Mark says, a "my body is already struggling, so what's one more issue matter?” attitude. Nor do I think I am "so wrapped up in self-pity and dysfunction" that I don't care that I'm moving my own neck "closer to the buzz saw with nonsense like unbridled tobacco and alcohol consumption when [I] know darn well that it all dramatically exacerbates [my] condition, literally making [me] more disabled." What?!?!? My love of coffee and wine has nothing to do with my disability. It has to do with the fact that I enjoy coffee and wine, and my life is better with these things than without.

On the other hand, I have known other young people with disabilities whose lives are so regimented that they've never experienced the pure bliss of laughing hysterically with their friends at a bar over a mediocre joke or a cheesy pickup line. They don't ever sit in the sleepy morning with a steamy cup of bitter-smooth roasted coffee, feeling the warmth energize their bodies and minds from the inside out. I guess my question is, unless there is some other unique health risk that these things pose to a person, why not enjoy a little vice once in awhile? Studies have shown that in moderation, coffee can be good for the digestive system and has no measurable health risks. Similarly, the health effects of red wine have been studied for years, and while the conclusions vary, it seems that there may be at least some benefit to moderate drinking.

I'm not trying to sound like a drug pusher here, and as I said, if you simply don't drink alcohol or coffee, I respect that. But please respect my choice to partake in my morning and evening beverages. In my opinion, my french fry vice is much more dangerous than my drink choices. The most dangerous activity that we wheelchair-users--myself heartily included--partake in is probably overeating and inactivity. I feel one million times more guilty and abusive of my body when I eat fatty foods and don't exercise than when I drink coffee or wine.

With that, I hereby proclaim that I will continue to drink alcohol and coffee, and I will not feel guilty for doing so. It's not my fault these vices feel so good.

WUFC: Wheelchair Ultimate Fighting Championship

I've never been terribly interested in sports, and I'm slightly embarrassed to say that 85 percent of all football/basketball/baseball watching in my life has been part of an effort to hang out with, or otherwise fit in with, a guy that I wanted to impress at the time. (Note to any of my guy friends who may be reading this: 15 percent of the time there was really nothing better to do, so no assumptions are warranted about what group you were in.;) I think team sports seemed too inaccessible, too impersonal for my taste. That, plus I've been told that I have the attention span of a gnat.

All of this has changed, as I've found the sport for me. It's exciting, unpredictable, fast moving, and it's something I can see myself doing: Ultimate Fighting Championship! Yes, that's right. I'm developing a taste for mixed marshal arts.

Allow me to explain. Many other sports, even boxing, have a strict set of rules, and a very limited range of actions that each athlete is allowed to take to advance his or her position. In football, players can't let the ball drop, in basketball, you have to dribble, and in boxing, you must use gloves and can only punch your opponent in certain ways. In other words, many sports reward a very specific set of skills, rather than matching a variety of strengths and skills against each other and thus allowing people to improvise around their advantages and limitations. As somebody who has always had to leverage my strengths and abilities against my weaknesses and disabilities, I respect the MMA concept.

In addition, I was fortunate enough to have a brother and sister who never thought of me as different as we were growing up. We fought, even physically, relentlessly. They felt free to throw punches, pull hair, and push me around, and I felt free to do the same, with some clever wheelchair maneuvers to boot (i.e. pinning my brother against the wall, or chasing them around the yard at full speed). Don't get me wrong, nobody ever really got hurt, and we're great friends now. It was typical kid stuff.

So that got me thinking. They have wheelchair basketball leagues, wheelchair tennis, wheelchair racing--why not wheelchair UFC? I'm not certain that I would do it, or even that it is a good idea, but it is intriguing. A sport that allows any method of fighting to be used, has rules to protect the fighters, and rewards leveraging your strengths against your weaknesses, would be perfect for wheelchair users.

For instance, without risking putting all of my cards out there on the table, my boxing game is weak. I don't have a very strong punch. That being said, my legs are pretty strong if I'm in the right position. This means that in a UFC bout, I would be best on the ground, engaging in a combination of dirty boxing and jujitsu. From the ground, I could throw a combination of strategic punches and kicks. With a little training, I might even be able to perfect a couple of submissions, and then watch out! While you're busy trying to box, I'll have you in a rear naked choke in no time.

I heard that Randy Couture recently left the league. The former UFC Heavyweight Champion of the World re-took the championship belt in a higher weight class at the age of 44! This guy is known for strategy and leveraging strengths. Perhaps he would be interested in exploring this new idea with me. Randy, if you read this, shoot me an email. Let's talk!