I hate stairs   In case of a fire, use the elevator. Quickly.

Some of the people that have, through the years, been charged with the task of being my care-giver, have not understood the underlying principle of how I work: my body is a complex system of weights and counterweights.

It is frustrating because I must always be in a position of balance to perform tasks (e.g., eating) independently. I have an unnofficial list of positions that I use. Eating fingerfoods requires a position I call “The Praying Mantis.” I stand my arms on the table with my hands propped against each other. It resembles a praying position. I have another position for eating more complicated foods that require a spoon or a fork. I have another for using my computer, playing video games, sleeping, using the restroom, driving my chair, riding in my van, and a host of other situations.

Now I know it’s probably picky to expect someone to have every position memorized, but I think some people I have worked with lacked an understanding of simple physics. The same people usually have trouble following short, specific commands (e.g., slide both elbows toward each other). Some parts of my body are “dead weight,” if you will. So if I’m wanting to stand my arms up in The Praying Mantis position, but my assistant doesn’t prop my arms against each other, they will fall. It takes the weight of each arm pushing against each other to hold them up.

Some of my balancing acts (e.g., eating chips with a fork) are so unusual that one of my friends has dubbed me the MacGyver of eating. I must admit, I’m proud of my enginuity. Sometimes, I wish I could spend a week in an occupational therapist’s office with someone who thinks like me. I might be able to figure out how to play the piano. I’ve written some music, but I haven’t been able to hear it played on a real piano.

To my attendants’ defense, most of them have been good. I know it must be difficult for someone with full use of their muscles to think the way I do. In that context, I suppose I have had some great attendants. But when someone can’t seem to use his or her common sense when helping me, it rubs me the wrong way.

Self-centered? Maybe. Wrong? I don’t think so.

Mississippi State’s Lee Hall auditorium filled to capacity Tuesday for the screening of “Darius Goes West,” an independent film about a teenager with Duchenne Muscular Dystrophy who embarks on a west-bound road trip. Darius, who’s friends helped him make the trip, left his home of Athens, GA on an adventure across the country to get his wheelchair “pimped” on MTV’s Pimp My Ride.

Matt and I were allowed to enter the auditorium early to find a place to park our chairs before the crowd congested the aisles. Ironically (maybe), the place chosen for the screening was one of the more inaccessible buildings on campus. It remains that way largely because of its historical value. It’s an old building, but its classic. However, the auditorium was recently renovated extensively. Ramps had even been constructed to allow wheelchairs onto the stage. Unfortunately, the planners of the renovation failed to include sufficient wheelchair seating in the auditorium. The organizers of the screening made up for it (or tried to) by reserving the entire front row, allowing wheelchairs to park in front of the seats. Not wanting to stick out, Matt and I parked to the far right of the front row.

I had high hopes for the film, but I was a bit skeptical as well. I was unsure how the film would present life with a disability (in this case, one similar to mine). I was unsure how my non-disabled peers would react. Would it give them a better understanding of how one lives with a disability? Would it confirm that people with disabilities have no hope and should just play and be taken care of until they die? Would it invoke empathy or sympathy? Would it make them think of people with disabilities as slightly inferior (in an unconscious way)?

The storyline was definitely the stuff of a documentary film. An ordinary kid. A bold quest. I couldn’t help but think that it would be entertaining, while also showing how ordinary people with disabilities live life.

And so we watched as Darius and his good friends set out for California. They had ups and downs along the way, but they always made the best of the downs. The often used humor to turn a crappy situation into a funny one. I won’t ruin it for you, since you’re going to buy the film on DVD, but it was a success.

While it was somewhat touching and emotionally dramatic, which I think is what many expected, it also realistically showed some the issues people with MD face. It emphasized empathy. It emphasized the need for accessibility. Yeah, it was probably not presented the way I, my brother, or other person with a disability would have presented it, but Darius’ crew presented it well from the perspective of the non-disabled person. They did so with understanding. Audiences probably relate to the film more from this perspective.

Best of all, they helped show something that I, for one, find difficult to express at times. Personality. We got to know Darius. His jokes. His smack talk. His laugh. His attitude. His talents. His passions. The things that make Darius, well, Darius. I’ve felt, at times, that having a disability made social interactions trickier and more awkward than if I had not had a disability. Sometimes it takes people a while to get to know me because of that barrier. Some people click with me easily, some don’t. I suppose that’s what it’s like with everyone. But of everything in the film, the revelation of Darius’ personality best provides understanding about people with disabilities. That they are just that. People.

DGW—Know about it.

I was doing a decent job of keeping up with my writing schedule (okay, I was a little off) until about two weeks ago, when I got bombarded with school. And I mean bombarded. Due dates and deadlines came at me like linebackers after a quarterback. My email inbox began to overflow. My extra-curricular involvement fizzled. I started missing assignments. I turned in below-average homework. I did kind of bad (I think) on an Accounting exam and then bombed miserably on a Finance exam. On top of all that, I’ve had a sinus infection and some stomach issues. The past two weeks have been some of the worst weeks I can remember having in my college career. I had to regroup. So I came up with a plan.

I was originally taking four classes this semester. Marketing Research is full semester and in-person. Finance 1 and Accounting are intensive, 8-week classes that take place first term (i.e. the first half of the semester). Management of IT and Systems is also an intensive, 8-week online class scheduled for second term. Like this:

Fall 2008 Class Schedule

I decided last semester that online classes would be better for me since I work well using a computer. Unfortunately, I didn’t consider the disadvantages of online classes. The first is that I retain most of the test material during lectures. I don’t retain a lot from reading, especially if I read through entire chapters. If I skim, I tend to miss everything. Well, online classes don’t have much lecturing. Accounting does have some useful video lectures, but Finance is lacking.

The second disadvantage is that exams are usually open-book and open-note. Obviously, distance learners cannot be proctored as well as their in-person counterparts. Most professors assume that students will use the book and or notes. To compensate, professors write more difficult questions. Open book tests are usually a disadvantage to me because it is difficult for me to flip through a book, much less at the same time I’m writing or typing. I hate textbooks. While it is possible to get digital copies, it can take weeks or even months of dealing with large, bureaucratic publishing companies. So I end up not using a book, but still having to answer tough questions.

Combined, these disadvantages (and the fact that some of the classes are intensive) left me taking a Finance midterm for which I was completely unprepared, without my book and notes, having to use a mouse, keyboard, and financial calculator at once. I nibbled on it, realizing I was getting nowhere, then turned it in mostly incomplete. I talked with my advisor today and dropped the class. The unfortunate result is that it is not offered in person next semester (my last). I will be forced to take it online again. But at least Accounting will be done. And now I know what to expect. I will plan out my tests with DSS so I can get some accommodations (writer and extended time).

As you can see, I’ve been busy. But some of the pressure is off now.

With school starting back, I must get myself organized so I can balance all of my duties. Keeping up with my academic reading is more important than ever because most of my classes are online this semester. My Web design projects are also a priority, not to mention social activities, fantasy football, and this blog.

To keep it all going, I will be posting updates on a schedule. In fact, it will be the same schedule that Mississippi State’s newspaper, The Reflector, uses. I will make biweekly updates, on Tuesdays and Fridays. I might still post in between these scheduled updates on occasion, if the subject is worthy.

The posting schedule should keep me going. And speaking of going, that is the subject of tonight’s post.

Being the big fan of food that I am, I don’t miss many meals. I’m on a rigid schedule for meeting my student attendant for lunch and a restroom break. On a typical day, I will pick up something from the Union and take it over to Student Support Services, my home away from my on-campus apartment, which is my home away from home.

There is a small wheelchair accessible restroom. It consists of one toilet stall and one urinal. I hate using the stall so much that I normally back my chair up against the door to keep people from coming in (I stay in my chair and use a small urinal). It worked for a long time. But yesterday, my assertive “hang on…” was not enough to keep a particularly desperate patron, well, hanging. I realized I was going to have to move away from the door when he eloquently replied, “I needa get in there, man!”

As much as I like to be alone in that small bathroom, save my attendant, I am going to start using the stall. But at least it’s a men’s room.

The dark side of being out and about with my Mom is that, in the event I have to use a public restroom, it’s going to be for women. There’s not a chance that Mom is going to walk into the men’s room and risk seeing a guy taking a leak out in the open. And the accessible stall is always in the very back. It’s like a march of shame, with little girls asking their moms why I’m in there. Twice. Entrance and exit.

It’s the simple things in life that I don’t take for granted.

I’m finally getting around to posting the videos from our power soccer practice. I put three different clips in one video, complete with narration. It shows what I think was our best practice to date (I missed last practice, shame on me). We learned a little strategy about positioning on the court. The previously mentioned 2 On 1 Rule was properly enforced, keeping us from getting all of our chairs jammed up together.

It was a fun practice. It made me think about the coming games we will play this season. I’m beginning to think we have something. We just need to tap into it some more.

I’m getting over an upper respitory infection. It was not the best timing, considering my meeting and future interview with Apple. I’ve had a rather hard time coughing up the secretions. Many of the parents who have commented on my previous posts will be familiar with this problem. Kids with SMA type 1 use several pieces of equipment, on a daily routine, to keep their lungs clear. I have type 2 and I’m usually pretty clear unless I get sick.

I’ve been sick for the past three days. My cough assist machine is at my apartment at MSU so it’s not helping me any since I’m in Jackson for the summer. So I had to adapt. I came up with my own, stunt-devil version of coughing. Odd, but it works.