Life Rolls On cover

My first reaction was something like, “Whoa, this is like someone taking my thoughts and then publishing them.” It was real. I don’t know many people who know exactly what I go through with SMA. My brother, Matt, knows me inside and out as we often share moments of identical brain activity. Other than that, the people my age that I have talked to who truly understand living with SMA is a tiny, one-digit number. Despite the relentless tragedy that a book about SMA inevitably exudes, I found comfort in knowing that someone else has faced the same challenges I have. But it wasn’t all bad news. Duane’s story was one of hope, acceptance, courage, love, endurance, and positivity.

What affected me the most was the period in Duane’s life just after graduating high school. He was unemployed and lived with his parents. He was struggling with depression because his life lacked purpose. It had been reduced to a life of being isolated in his house only to emerge into the real world for so-called “soda runs” which were less about a craving for soda than they were about a craving for human interaction. He wanted a job and a family even. But those things seemed far out of his reach. At the risk of spoiling the plot, I’ll say he finally did achieve those wishes. But reading about his inner-battle reminds me of where I am in my own life. In fact, I even have his daily soda-runs in the form of having my attendant take me out to lunch. And I hope that, like him, I will find an employer who won’t write me off and maybe I can even run into my own “Kim”, perhaps on one of my lunch-runs. Who knows, right? :-)

The takeaway of Life Rolls On is just that. Life keeps going and you have to roll with the punches. Do what you can, be positive and proactive, and take a leap of faith. As I said before, you still have your dreams. Duane’s book is a case study in achieving them.

The opening keynote on Day 1 was the perfect way to begin a conference — of any kind. It was titled “Dwelling in Possibility: the Values, Beliefs & Habits of Inclusive Schools” and was presented by author and speaker Dr. Paula Kluth. I’ll be the first to admit that as someone who has finally finished the “schooling” part of his life and is mostly focused on employment, I wasn’t expecting to be blown away by a talk about our nation’s school systems. Boy was I wrong! In hindsight, this talk set the foundation for the rest of the conference.

A vision bigger than our vision

Rightly so, Dr. Kluth began with one of the most prolific civil rights dreamer of our time, Dr. Martin Luther King, Jr. Dr. King was a visionary. In his epic “I have a dream” speech, he described what he saw was possible at a time when such things were very impossible. We have come a long way since then. But, sadly, people with disabilities fell behind in the civil rights movement.

It took a while for children with disabilities to gain access to schools (because why would they need to be educated, right?). Even when children with disabilities got access to schools, they didn’t necessarily get access to educations. Even when I was in grade school in the early 90s, kids with disabilities were often segregated from the rest of the kids and educated at a level deemed appropriate for them. And how was this level determined? Standardized assessments? As it turns out, neither IQ nor behavior patterns, nor any other typical data point is a good indicator of how well a kid with a disability would be included. The most reliable indicator for inclusion is zip code.

Yes, where you live is what determines how well you will be included.

Communities, parents, teachers, and administration who have higher rates of inclusion do so because they see what is possible. Had Anne Sullivan not come along and saw what was possible for Helen Keller, what would the world be like today? And what if she had given up after weeks of seemingly useless teaching? But she had a vision. And she stuck with it until Helen had her defining moment.

The point is that if people are willing to see what is possible for a child with a disability, that child has the potential to go far. The most dangerous assumption is that the student won’t learn anything. That he or she won’t understand. The least dangerous assumption is to believe that the student will understand and will learn. Because the reward will far outweigh the risks. We have to have a vision instead of writing people off. And when we think we have achieved everything that is possible, we need to have an even bigger vision.

I’ve been out of college since May 2009. I’ve been trying to find work ever since. I know I am a good web designer. I know I have a lot to learn. But I know I can succeed if given the chance. I want to contribute. I need to contribute. I don’t want to spend the rest of my life on disability.

I’m an avid learner when it comes to web design. I read constantly. I keep up with best practices and technology. I study principles of design and apply them to my work. All this has managed to keep me satisfied. I justified not having a job to myself by saying that I have been using the time productively, getting better and better at my craft. My good friend Jeff Horton, president of Stop SMA, put me to work on Stop SMA’s websites, and that has really helped me keep going during these last two years.

Earlier this year, I worked briefly as a Happiness Engineer for Automattic on a trial basis. In short: it was awesome. I could work from home just like everyone else in the company. I got to interact with great people. And I got to help people with their WordPress.com blogs. A win-win-win. But I’ve always told myself that I wouldn’t go for a position if my disability kept me from doing a good job. The primary function of the job was replying to email. And one of the things I am slowest at is writing email. Code is easier. I have tools that make me much more proficient at writing code. But good old-fashioned English language I can only output at the mind-blowing rate of about 18 words per minute, thanks to HippoRemote and KeyStrokes. Otherwise it would be a lot slower. Let me be clear. Automattic did everything right. My team leader said she was looking at quality over quantity. They gave me honest feedback and they offered to help however they could. I will forever be grateful for that. But in the end, support requests were flooding in and I didn’t feel like my output was going to help the Happiness team much. In the interest of the company and the users, I ended my trial with Automattic on good terms. It was back to square one.

About three weeks ago, things looked like they might turn around for me. I applied for a web-related position with a Mississippi-based company (of which I won’t name). I completed a questionnairre that was reserved for only the “serious” candidates. I did a one-hour phone interview. The next day, I did an in-person interview. I talked to three people and the entire interview was nearly two and a half hours. Few candidates made it that far, possibly me and one other person. I was told I would here from them, regardless of whether I was hired or not, in a couple of days.

It’s been three weeks. I’ve yet to receive any contact whatsoever. I may have to eat my words (in fact, I hope I’ll have to) but it seems that they hired the other candidate and the courtesy of calling me to let me know just fell through the cracks. I’m not making any accusations, but after a while, I start to wonder why I am able to make it to in-person interviews but never get an offer. How much does my disability affect my chances? I don’t want to think it affects them at all because that would be a tough pill to swallow.

So here I sat. At the very desk on which I am writing this post. And somehow, I stumbled upon the September 1 episode of The Big Web Show with Jeffrey Zeldman and Dan Benjamin. Let me set the stage. This podcast is big, as the title suggests. Jeffrey Zeldman is like the Godfather of web design. His circle of influence hit me early in my quest to be a web designer. And Dan Benjamin is this mad genius with a perfect radio voice who, I’m convinced, can carry on a conversation on any topic with any person and look like a seasoned expert in that area.

So there I was. And I they were covering a topic dear to my heart. Disability. And not just the usual screen reader angle. They interviewed this amazing woman, Marissa, who in many ways is going through the same thing that I’ve been going through for the last two years. And they were just chatting about her disability. And she wants to be a web designer. And she needs to work from home. And Jeffrey and Dan were taking to heart her struggle and sharing it with the world. And it was amazing.

Back in 2008, I managed to attend the awesome conference for people who make websites, An Event Apart (co-owned by Zeldman). It was one of the best learning experiences I’ve had. And I want to go to another one. But traveling is extremely difficult. And accessible hotel rooms are expensive. And the conference ticket price is expensive. So I haven’t gone back. I don’t have any web designer friends in my area. I’m isolated from that world. And it’s hard to get in when you’re isolated.

But here was Marissa. She made it to The Big Web Show and she was sharing with Jeffrey and Dan my exact frustrations, as well as my aspirations. While listening to the podcast, I get a phone call from my Mom. She felt bad about the whole job thing and wanted to take me to eat and see a movie (don’t hate, Moms are awesome!). It was in that moment that I realized something.

We still have our dreams.

Regardless of whether this company hires me or that company hires me, I am going to continue making websites. And with each one I will get better and better. Hearing Marissa’s story made me remember when I was in that same predicament. Well, not exactly the same. But close. I was just getting started in web design. It was scary. I didn’t have the means (physically or financially) to go to a design school. But I knew I wanted to make websites. I lucked out and had what may very well be the best course I ever took: Advanced Languages I with Dr. Rodney Pearson. In it, I learned JavaScript and HTML basics. I began picking up CSS and design principles on my own. I started making websites. Starting is at least half the battle. Regardless of what obstacles came in my way, I pushed forward in stubborn ignorance, determined to do what I wanted.

Sitting at my computer the other day, I realized that I had, indeed, become a web designer. I make websites. And not having a job right now isn’t going to take that away from me. I still have my dreams. One day, something big is going to happen. I’ll land my dream job. Or I’ll become a successful freelancer. And even if neither of those things happen, I’ll at least keep volunteering for charity, working on personal projects, and contributing some of my creations to the world (WordPress theme is in the works!).

We still have our dreams. We have them when we are frozen with fear. We have them when people think it silly to reach for them. We have them when it seems everything is working against us. Sometimes life can appear a bit hopeless. But when we don’t quit believing in ourselves, when we have friends and family behind us, and when we take a leap of faith, who or what is going to stop us?

Matt, the savage dictator

You see, looking at Matt’s life from the perspective of an outsider, one might be tempted to believe that Matt, having a severe disability, has managed to break through the glass ceiling and, by virtue of his unwavering determination or perhaps by his rabid stubbornness, has done what a large percentage of people with disabilities have yet been able to do—get a job.

But I’m not an outsider. I have the scoop on the strange course of events that led to Matt’s recent hiring at Mississippi State University as a Spanish lecturer. And I am about to reveal to you how my own suffering led to Matt’s good fortune.

In my brief, nine-month stint as a sixth grade student at Whitten Middle School in south Jackson, I had but one friend. The janitor. This man most likely did more work than he was being paid for, had a better attitude than many folks making more than him, and, most importantly, was willing to do a job that no one else at the school was willing to do—assist me with using the restroom. Though this was enough to let me physically survive the school year, the conglomeration of all the other terrible aspects of that year left my parents with little choice but to invest more dough into my education by sending me to private school.

As I had paved the way, Matt was soon to follow. In his fifth grade year, he began his journey to fame and fortune as a lowly newcomer to the fledgling south Jackson private school, Southwest Academy. There he began to work his way upwards through the ranks of academia. The school was very small and very poor, and eventually would close down due to successive drops in enrollment. But not before Matt exploited it for everything it was worth.

Journalism was Matt’s first love (technically second; the first was… well, you know who you are). In his senior year at Southwest Academy, he was chosen to be Editor-in-Chief of the school’s newest publication (my superior publication, the KBG Times, had since been retired). He worked extremely hard doing approximately nothing to publish the entire two issues of the paper that were designed and printed by a teacher at the school. Yet, Matt had another resume booster as Editor-in-Chief of SWA Today.

That overstated accomplishment would serve him well in his college career. That’s right, he managed to get accepted into college by scoring a 32 of the possible 36 on the ACT. However, the validity of that score is widely disputed.¹ Nonetheless, his eventual start at Mississippi State’s student newspaper, The Reflector, ushered in a new age of prosperity that Matt had not seen since his SWA Today glory days.

Matt called on a political favor to get the job of opinion writer for The Reflector. His column, Gray Matters, became an immediate hit and amassed a cult following.² When the paper’s Opinion Editor was ready to move on just months later, Matt was interviewed for the job. I use the term interview loosely, because as Matt recounted to me the experience, there seemed to be much more compliments than questions. On the perceived strength of his SWA Today experience, he was given the Opinion Editor position and made him self the arbiter (read: suppressor) of truth for two years.

His experience as Opinion Editor led him to an internship at local NBC affiliate, WLBT. His general slackery and dismal job performance³ there was heralded as a fantastic experience and inspirational accomplishment.

After graduating with a double-major BA degree in Journalism and Spanish, Matt joined the Spanish graduate program. During this time he became increasingly snobbish, often showing out his fellow students and brown-nosing his professors. His manipulation paid off when he was accepted to be a Teacher’s Assistant and was given the responsibility of teaching Spanish labs. His performance was at best lackluster and at worst rude and demeaning. He naively thought his pupils should participate in class and even (gasp!) do homework. These poor Spanish students were subjected to all sorts of cruel teaching methods such as two-minute speeches and one-page essays. Oh, the horror.

Matt graduated in May 2011 with an MA in Spanish. Needing not even apply for a job, the MSU Department of Foreign Languages called upon him out of the blue with a job offer. No, not an interview. An offer. Fittingly, the Spanish dictator in training is now among the ranks of the establishment committing all sorts of atrocities as a Spanish lecturer—and being paid for it.⁴

As I have made painstakingly clear, my suffering as a child at Whitten Middle School directly corresponds to Matt’s unearned ascension to power. Had he truly overcome his disability and rightfully merited his place among the American workforce, I would have applauded him. But as you now know, it was greed and corruption that were the catalysts of his prosperity. The once lowly fifth grader at a now-defunct school became a monster charged with the task of educating the next generation of workers and leaders. What a cruel world this can be.

And here is a transcript:

Meet Sue.
Sue is an employee.
Sue is an employer.
Sue is a manager.
Sue is a mentor.
Sue is a teacher.
Sue is a writer.
Sue is a speaker.
Sue is smart.
Sue is funny :-)
Sue is exciting!
Sue is engaging.
Sue is a wife.
Sue is a mother.
Sue is a person with dreams.
Sue is a person with aspirations.
Sue is a person with a disability.
Sue is a person.

(at 60 seconds, video fades to credits)

Created by:

Blake Watson
www.blakewatson.com

http://vimeo.com/4894750

If you can’t view the video, or you just want to know more about the tablet, feel free to email me or comment.

Jerry Lewis and Luke Christie

By Matt Watson, The Reflector — link

As a person with a neuromuscular disease similar to muscular dystrophy, I know who my daddy is, and that’s Jerry Lewis.

Jerry, who was awarded the Jean Hersholt Humanitarian Award during the Oscars Sunday, is one of the most well known comedians in the world and arguably the best. More important than the laughs he created is the impact he has made on countless children and adults with muscular dystrophy, raising $800 million through his famous Labor Day telethons and, in his own way, adopting kids with this disease as his own. “Jerry’s kids” is a popular poster slogan used for his fundraising endeavors.

You may have known all this about the man, but perhaps you didn’t know there is a cancer in the disability community that shamelessly lambasts Jerry for his great achievements.

I was proud of Jerry as he accepted a deserved award Sunday. But soon after his speech, my brother pointed me to an online group of disabled people who protested the Academy of Motion Picture Arts and Sciences’ choice to bestow the award on Jerry.

On the group’s Web site, thetroublewithjerry.net, there is a petition that explains, “Jerry Lewis has helped to perpetuate negative, stereotypical attitudes toward people with muscular dystrophy and other disabilities. Jerry Lewis and the Telethon actively promote pity as a fundraising strategy.”

Such disdain for Jerry, as it happens, is nothing new. The protest of his Oscars award is the most recent chapter in a two-decade-long rebuke of the film genius and fundraising extraordinaire by some people in the disability community. On the Web site of the group mentioned above, you can view a 1993 Vanity Fair character attack piece on Jerry by a lousy journalist named Leslie Bennetts. The article now practically constitutes the bible of this segment of the disability community, along with a letter Jerry wrote for Parade magazine in 1990 that supposedly stereotypes people with muscular dystrophy.

Perhaps you can imagine the horror and anger boiling inside the deepest corners of my soul upon seeing such blasphemous material. I thought, “What kind of lowlifes would take everything an ardent supporter has done for them for more than 50 years and insult him with it when he’s old and feeble?”

In a video on the Web site, Sarah Watkins, a protester at Sunday’s Academy Awards, bemoans Jerry rather harshly.

“He has raised millions of dollars using negative stereotypes about people with disabilities,” she said. “He said that we can’t get out into the workplace, that we can’t hold down jobs.”

In the background of the video, you can hear another starry-eyed protestor chanting, “Self respect is here to stay.”

Let me explain as briefly as I can the blatant stupidity of these individuals. While they correctly focus less on people with muscular dystrophy as people with diseases and more on people with muscular dystrophy as a minority group deserving of civil rights and inclusion, they forget that muscular dystrophy is still a disease, that it is a bad thing, that it is almost always fatal.

That being said, the conglomeration of Jerry quotes on which the complainers’ argument is based is understandable when taken into context and when the person analyzing those quotes is not inebriated with dumbed down, romantic civil rights rhetoric.

For instance, when Jerry said people with muscular dystrophy couldn’t go into the workplace, he is largely correct. For one thing, the simple fact of having significant physical limitations makes it harder to do any job. However, above and beyond this point, what I think Jerry was probably trying to get at the most is that, despite the fact that people with muscular dystrophy are just as skilled as anyone else, it can be hard to get an education, much less find a job, in a society with employers who aren’t always open to people with disabilities. I’ve seen it happen to others, and I must admit I sometimes worry that when I get out of school, I’d be better off staying fully on Medicaid than trying to make something of myself.

As a matter of fact, the American Community Survey produced by the U.S. Census Bureau shows citizens with disabilities have a 38 percent higher unemployment rate than citizens with no disabilities.

I should also explain the letter (“If I Had Muscular Dystrophy”) Jerry wrote to Parade in 1990, a letter that continues to receive so much ungrateful feedback. In that masterpiece, Jerry explained dramatically and shockingly accurately for a non-disabled person the indignities of growing up with a genetic defect. Jerry wrote the letter as if he had muscular dystrophy in order to convey the indignities of “everyday living” like taking a shower, eating or traveling. And make no mistake that these things are indignities. I know personally that having your clothes stripped off by a new attendant you met just five seconds ago isn’t fun, although it’s necessary.

Jerry also painstakingly presents the frustration people with muscular dystrophy feel when, no matter how accessible, society never seems to be accessible enough. It’s never enough. There is always something you can’t do, and when you’re a child, there are a million ways to be humiliated in school.

Jerry said children in school can be “mean, cruel and just plain inhuman because they find pleasure in having ‘fun’ at someone else’s expense.”

I can attest to the accuracy of that, although I was lucky enough to miss out on the bullying some of my friends went through. One or two of them were even ignored by high schools that made them wait until they got home to their mommies every day to take a piss because there was no one willing to assist them.

I say all of this to show the terrible aspects of having a neuromuscular disease, but I’m not saying I hate life, that people with disabilities should be negative or that America isn’t one of the most accessible countries on Earth. I wouldn’t take anything back in my life up to this point, but that doesn’t mean neuromuscular diseases aren’t a curse, just like any other illness or catastrophe that may befall a humanity cast out to till the ground. I’m just thankful it’s one of the only things I have to worry about in my overall great life.

So when Jerry calls a wheelchair a “steel imprisonment” and says fully human children with muscular dystrophy “have to learn to try to be good at being a half a person,” he is speaking the truth, although it might not jive well with the young ears of the most modern disabled generation. That generation has, in fact, benefitted from more advanced technology and medicine than what people had to work with in 1949 when Jerry began his advocacy. At least acknowledging this generational barrier should put Jerry’s language in perspective.

Some have lost sight of Jerry’s goal, which is to raise enough funds to find a cure. I beg these lunatics to let the man do his work.

As the well spoken Jerry once told the Vanity Fair writer, “I’ve raised one billion three hundred million dollars. These 19 people don’t want me to do that. They want me to stop now? F— them. Do it in caps. F— THEM.”

I’m skipping the pleasantries today. Here’s the website: thetroublewithjerry.net. Go look at it now. Seriously, I’ll wait. Just don’t forget to come back!

Back already? I’m not surprised. It doesn’t take long to understand the message: Jerry Lewis is not deserving of a humanitarian award, such as the one he was given at the Oscars Sunday.

The Trouble with Jerry campaign presents many quotes from Jerry Lewis himself, which its members claim are bigoted and pitiful. The TWJ supporters claim that Jerry’s fundraising work with MDA, such as the annual telethon, spreads negative stereotypes about people with disabilities.

Many of the quotes they use come from an article Jerry Lewis wrote titled “If I Had Muscular Dystrophy,” that was published in the September 2, 1990 issue of Parade magazine. As the title suggests, Jerry takes a first-person look at the challenges faced by a child with muscular dystrophy.

While I enjoyed the article, I understand where the disability activists are coming from. When Jerry refers to the wheelchair as “that steel imprisonment that long has been deemed the dystrophic child’s plight,” I can understand why somebody might take issue with that. On the other hand, I can see where Jerry is coming from. He’s trying to raise some money to help kids who have a disease that is very often fatal. It may not be the most tactful way to put it, but I can attest that my wheelchair has, at times, felt like a steel imprisonment. As difficult as some might think it to be, it is important to understand the generational gap that exists here. As a young person in college living in a time where technology can help people with disabilities excel further than they ever have been able to before, I have the vigor to succeed. To overcome the obstacles in my path. A positive attitude about my disability and about who I am. Even so, the way Jerry articulates some of the challenges that a young person with muscular dystrophy faces is so real to me that I almost can’t fathom that a person without muscular dystrophy wrote the article. Let’s have a look at some of these.

Let’s start with what, for most of us, is a simple number of tasks just to get into the mainstream of everyday living … like brushing our teeth, taking a shower, cutting our toenails, filing our fingernails, combing our hair, shaving, using makeup. All of that isn’t even the tip of the iceberg. Example: Bathrooms aren’t built in normal homes to accommodate a wheelchair (oh, in some cases people with money will rebuild and makes things easier for the child and themselves). Just getting through the bathroom door isn’t all that’s involved. Space is needed for a chair to turn, or for a child to be carried and dealt with out of the chair. It’s still only the early hours of the day and already I am beginning to feel trapped and suffocated trying to visit that bathroom.

To me, this seems like a fairly accurate description of a typical morning. It takes me several hours to get up and get ready for class in the morning, and by the time I do, I sometimes feel quite tired. Whether it’s trying to get my patient lift into the shower without roughing myself up or getting out of the shower quick enough to keep from freezing to death, the morning routine has its fair share of challenges.

Now it’s time for breakfast. If I live in a one-floor dwelling, it’s not all that tough getting from Point A to Point B. But there are situations where you have to be carried down a flight of stairs with the wheelchair right be hind. Just the indignity of having to be carried (especially when you’re 12 or 13) is devastating. I know that if I don’t use that chair I will be carried … So you learn to live with that, or at least you make every effort to try to feel that “this, too, shall pass.” Although the conscious mind works in many cases, the subconscious mind knows the truth and reacts on it … So the pain never leaves.

One’s first reaction to the language used in this section (e.g., “indignity,” “devastating”) might be to feel that it is condemning to the kid with MD. I don’t get that from this section, though. I think he is touching on several things here. One of them is that people stare and that society puts a stigma on people with disabilities. That’s why having to be carried is an indignity and is devastating. It’s similar to when I am in public and I need to use the restroom. If I’m with my mom than I only have one option: the women’s restroom. There’s just no way mom’s going to go into the men’s restroom and risk seeing something that she doesn’t want to. So I go to the women’s restroom. I usually must travel to the back of the room to get to the wheelchair accessible stall. Past all the little girls who are wondering why I’m in there, past the girls my age who I, by the very nature of being a male, feel the need to impress. It’s like a march of shame. Don’t get me wrong. It’s not like I get really down and out about having to go in the women’s restroom. But it’s not something I like to do, and it definitely doesn’t make me feel dignified.

I think another point that Jerry was getting at, that many might not be aware of here, is the knowledge of the progressiveness of muscular dystrophy. While it’s not the same as having a car accident and suddenly going from being disability-free to being paralyzed from the neck down, muscular dystrophy is similar in some ways. It gives you the knowledge of what it’s like to be able to do some things one moment, and then it strips those abilities away from you. It is a slow continual process. When Jerry says “the subconscious mind knows the truth,” I know what he is talking about. In some ways, I sort of have to forget about my disability — at least the part about it being fatal (People with SMA Type 2 usually live close to a normal lifespan, although it varies. People with SMA Type 1 many times do not make it past the age of two or three.)

In his article, Jerry continues to explain various scenarios that people with muscular dystrophy might face. He’s not trying to reduce them down to a pointless bunch of weaklings with a meaningless existence. He’s simply explaining the challenges of a kid who has muscular dystrophy from a first person point of view. And then we come to this controversial paragraph.

I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I’m not as fortunate as they are, and I bet I’m in the majority. I’d like to play basketball like normal, healthy, vital, and energetic people. I really don’t want the substitute. I just can’t half-do anything — either it’s all the way, or forget it. That’s a rough way to think in my position. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person … and get on with my life.

I may be a full human being in my heart and soul, yet I am still half a person, and I know I’ll do well if I keep my priorities in order.

The quote that is the most infamous here and one that is presented by The Trouble With Jerry is “When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things half way. I just have to learn to try to be good at being a half a person… and get on with my life.” I suppose that without any context to help explain the meaning of this quote and a misunderstanding of where Jerry is coming from, it would seem to be a horrible thing to say. So where is Jerry coming from? He is explaining the effects of muscular dystrophy from a first person view. He is not making statements about people with muscular dystrophy from his own point of view. He is not telling them that they are half a person. In fact, in context we can see he also said “I may be a full human being in my heart and soul, yet I am still have a person, and I know I’ll do well if I keep my priorities in order.” Is this a contradiction? No! In context he is talking about someone with muscular dystrophy wanting to play sports. His choice to use the word “cripples” is understandable in the first person. I know people in the disability blogosphere who use this kind of language amongst themselves all the time. In context, he wants to play basketball like anyone else would but he realizes he has to substitute. “I just can’t half-do anything — either it’s all the way, or forget it,” he explains. I know what this feels like.

When I was very young, I played tee ball. The teams were made up of kids with different disabilities and we were all assigned a buddy who would stay by our side and help us play. Though I did enjoy it for the most part, I did realize I was playing a sport for people like me. I knew I wasn’t playing the kind of sport that my friends at school would play. Our games always ended in ties. Basically, everybody got a chance to hit the ball at least twice and go around the bases. Now, I know there are plenty of very competitive sports that people with disabilities play, but I’m commenting on my own experience as a child. I got to the point where I was participating just to be out at the park with my mom, brother, and friends. I wasn’t there for the game because there was really no game. I can understand wanting to either do something or not do it — and not halfway doing it. And that’s when Jerry’s controversial quote makes a lot more sense than first thought. Because I shouldn’t live my life, as a child especially, not playing sports and not having fun because of my disability. I realized that I have limitations (i.e., my life is half) and that I have to do things that are within my limitations (i.e., do things halfway). I have to accept things and have a positive attitude because, if I don’t, I’ll be a frustrated child not having any fun. So I decide to work with my limitations, with my disability, with the progression, and I do it with a determination that perhaps only a naïve child could have (i.e., I learn to be good at being half a person, and I get on with my life). And that’s what makes me a “full human being in my heart and soul.”

Jerry is wrestling with feelings that I know to be all too true. Now I know some of the protesters had muscular dystrophy and this article did not seem to relate to them. I can’t speak for them. But when I read it upon hearing about this controversy, I thought “wow, this guy really does understand.” He has articulated feelings that I know I’ve had before but that I cannot explain in words. So maybe to some it comes off as a pathetic article written by a celebrity who could care less about the rights of people with disabilities. But I think that idea could not be more wrong.

But I always have the feeling in the pit of my stomach that I want to scream out “Help!” Or, “See what has happened to me!” Or, “Is anyone watching?” But those screams are usually muffled by the inner voice that tells me what to do and when, and tells me softly and strongly: “Be still … Hush … Drive quietly … Try to make as few waves as possible.”

I have never really found out why, when someone is dealt a bad hand, they immediately feel inferior and out of touch with the mainstream of life — when in fact we’re more productive, more educated and more apt the excel than most of the fortunate people who are either indifferent of just don’t care. I wish they knew that one day they could find themselves just as I am … a statistic that breathes and lives and hurts and tries to make it through life without bothering too many people along the way.

It looks to me like he does understand. He understands that society places obstacles in our path. He realizes that, in fact, we are capable. Sometimes more capable. Jerry Lewis is a person who understands. And not just that, but he is a person who is doing something about it. No, he’s not a disability rights activist pushing for things like universal access. He is taking a different focus, which is not necessarily wrong. He’s trying to get enough money together to pay for a freaking cure! And I, for one, shout at the top of my lungs (which isn’t very high) “More power to you, Jerry!” I don’t want to get into the whole medical versus social or cure versus no cure debate. I’m just going to state matter-of-factly that if I don’t get a cure, this thing is probably going to kill me. And I don’t think anybody can question my desire for a cure or the possibility that it could actually happen. It is not something unreachable. I’m not putting my life on hold, but that doesn’t mean I’ve forgotten about it altogether.

I know people have their gripes about the Muscular Dystrophy Association, but without it, I would not be the person I am today. Whether it be the Summer camps, the equipment, or the people I’ve met over the years, MDA has had a huge impact on my life.

So am I upset about Jerry Lewis getting a humanitarian award at the Oscars? Of course not. No matter what people are saying about him, he has helped a lot of children and he understands their plight. If that is not a noble endeavor, then what is?

Those are my thoughts about this whole controversy as of now. I will conclude by answering the question that was framed to me once by an attendant of mine. “Who’s your daddy, Blake?”

Jerry is.

SA should have disability group

http://media.www.reflector-online.com/media/storage/paper938/news/2009/02/17/Opinion/Sa.Should.Have.Disability.Group-3632850.shtml

The Student Association traditionally includes a cabinet position called Students with Disabilities Affairs (SDA). In recent years, SA presidential candidates have run on platforms that have included reducing the size of the cabinet. To achieve this, Students with Disabilities Affairs was combined with Student Health and Wellness (SHW). United Students, a student organization made up of students with disabilities on campus, has since proposed this was not an appropriate combination. This essay will explain why United Students members and friends disagree with the combination of SDA with SHW.

Students with disabilities share similar experiences, concerns and challenges. In the disability community, this is known as disability culture. Just as members of the Indian Student Association share a culture different than the majority of MSU students, students with disabilities also form a minority group on campus. This is the way students with disabilities see themselves. While having a disability does involve physical or mental impairments, people with disabilities see their way of life as the central characteristic of having a disability. Indeed, people with disabilities may have innumerably different impairments and conditions, but many find common ground in their culture.

Understanding how people with disabilities see themselves – as a minority group with its own culture – is important to understanding why they would not want disability concerns to be addressed under the banner of student health. As unintentional as it may be, the inclusion of disability programs under SHW seems to portray disability as a health issue more than a culture issue. As such, it seems to the members and friends of United Students that a combination of SDA with Minority Student Affairs would be a more appropriate combination.

Better still, the SA could keep the Students with Disabilities Affairs position. With the right person, this position has the potential to be very beneficial to the SA and the university. There are more than 200 students with disabilities at MSU. Pushing for accessible events and an accessible campus should be a priority of the SDA. It should plan creative awareness-building events that help bring down the social divides. Mississippi State University is known, even by its in-state competitors, as the state’s most accessible, disability-friendly university. Students have played a significant role in achieving that status. The SA should do now what it has done for many disabled students past: empower them.

The student government elections are upon us. For United Students, it will be a chance to convince the incoming president to consider adding a “Students with Disabilities Affairs” position to his or her cabinet. Long ago, in a galaxy far away (2004), I was co-director of that position. I was finishing up my freshman year, when one of the candidates left a crowd of potential voters to come and talk to me as I was enjoying the sunny day. I decided to seize the opportunity to ask about a few disability issues. He responded well. If he won the election, he wanted me to apply for a cabinet position. He won. During my interview for the position, I almost lost it emotionally while explaining that a big reason for my decision to apply for the cabinet position was because of the presidential hopeful’s willingness to walk away from a large crowd just so he could talk to me. In hindsight, it seems rather cheesy. But I was shy and inexperienced, and it was scary. All I knew is that I wanted to make a difference. Mississippi State University was already the most disability-friendly university in the state and one of the best in the nation. But I knew of several issues, and I had ideas for how to fix them.

After my year on the cabinet, the Disability Support Services Coordinator asked me to join a student organization that was going to discuss and act on disability-related issues. I asked him how many members there were. “One. You,” he replied. The organization known as United Students had been around for a while, but had been dormant for a few years. Over the summer before my junior year, United Students grew to a size of about 10 members. We continued to operate in cooperation with the Student Association until they downsized and the cabinet, practically eliminating the Students with Disabilities Affairs position. Being a former member of the SA Cabinet, I remember seeing pictures hanging in our office of cabinets past. In most of the pictures, I could tell which student was the director of Students with Disabilities Affairs. Usually, it was the student off to the side in the wheelchair. The person in that position through the years had likely helped to make the University the very accessible place that it is today. The last thing we needed to do, was eliminate that position.

So, United Students scheduled a meeting with the Student Association President. As it turns out, the Students with Disabilities Affairs position was combined with the Student Health position to form a new position called Student Health and Wellness. This just didn’t go over well with us. We didn’t want the voice of students with disabilities in the Student Association to be heard under the banner of health and wellness. I don’t have to tell my fellow disability bloggers that having a disability is much more than the impairments themselves. No matter what differing impairments we might have, we find common ground in our way of life.

Over the next few years, we would gain the position back and then lose the position again. That brings us up to the present. The current administration decided that it would be best to once again form Student Health and Wellness, at the expense of a separate disability-related position. So once again, we are going to press the new incoming administration to bring it back. And this time we are kicking it up a notch. Fortunately, my brother is the opinion editor at the student newspaper, The Reflector. He is going to be running a letter to the editor that I wrote, which attempts to explain why, in many situations really, the medical aspect of having a disability should not overshadow the other aspects. The purpose of the letter is to explain why the position should be reinstated.

Once the letter runs tomorrow, I should be able to post it here as long as I provide a link to the newspaper’s website (I wouldn’t want to upset the Opinion Editor a.k.a. Determiner of Truth).

I’ve been a bit long-winded this morning. This is the first post I’ve written completely with voice recognition. I’m pleasantly surprised. I may find out that I have a lot more to say now that typing is not an obstacle.