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

Some of the most interesting social behaviors occur on public sidewalks. Lately, my wheelchair has spooked pedestrians into reacting with the oddest of behaviors: a move I will call “The Fake Detour.”

The Fake Detour goes a little something like this. I’m traveling down the sidewalk at a normal speed (maybe fast walking) when I begin to close in on a pedestrian in front of me. I slow down enough to maintain a comfortable distance, usually about 5 to 10 feet behind the person in front of me. The pedestrian in question then commences The Fake Detour by straying from the sidewalk and stopping, as if to observe a sign or something on the ground or as if to stop to think. Once I pass by the person, he or she will continue back on the sidewalk, now safely behind me.

I hypothesize that the subject (1) is aware that I can travel at a faster speed than him or her, (2) perceives that I desire to travel at a speed faster than him or her, and (3) is compelled by feelings of empathy and or insecurity to remove him or herself temporarily from the sidewalk, leaving my path unimpeded.

I further hypothesize that the majority of subjects commit The Fake Detour out of feelings of insecurity rather than those of empathy. It is as if they think I am a stalker on wheels, determined to catch them in a secluded area where I will undoubtedly inflict irreparable damages to their toes and shins. To date, I have only defended myself from this deceptive maneuver by increasing the distance between me and the pedestrian in front of me. But my defense is no longer enough. I am now considering a counteroffensive measure. It’s simple. I will counter The Fake Detour with The Fake Detour, engaging unsuspecting pedestrians in psychological warfare.

To those who will say, “But what about the ones who move out of empathy for you?”, this is my reply. There will be some unavoidable casualties.

Freedom isn’t free.

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.

You may not be able to tell from the title, but this post is going to be a book review of sorts. One Mary Johnson from one Ragged Edge Magazine penned a manual called “Disability Awareness—Do It Right!”

I was inspired to read this book, which I actually bought last year, because my student organizations disability awareness event(s) are coming up in October. Had I known that this book would help me clarify my perception of disability and awareness of it, I would of read it the day I bought it.

Johnson begins the path to understanding by helping the reader “unlearn” the things he or she “knows” about disability awareness days—and disability in general. Johnson introduces a largely unknown, but not new, way of thinking about disability awareness. Her ideas are not the result of a mere “gut feeling.” In Disability Awareness, Johnson looks to civil rights movements in the past, research from universities, and insight from disability activists to shed light on disability, awareness of it, and how disability awareness events should be approached to achieve optimal results.

Johnson bases much, if not all, of her ideas on the social model of disability. Since I entered the disability blogosphere just two and a half months ago in June 2008, I have been trying to understand the social model of disability as opposed to the medical model.

The social model divides the term “disability” into two parts. There’s the impairment, which is the actual blindness, muscle weakness, paralysis, disease, or other loss of function. Then there’s the disability, which is the extent to which the person with the impairment is “disabled” due to society’s failure to accommodate him or her (e.g., no ramp onto a sidewalk). To better understand this idea, let’s look at a real-life example.

Before McCool Hall, a building on campus, was renovated and expanded, I had one completely accessible entrance. There was a level, automatic-by-motion-sensor door in the back of the building. Freeze. My impairment is my Spinal Muscular Atrophy. My disability was the fact that I could not enter in the front of the building because the fully accessible entrance was in the back of the building. Continue.

McCool Hall underwent renovation and expansion. The building expansion resulted in the once-accessible entrance being covered up by the add-on, which itself did not have an accessible entrance. In the days right after the building reopened for the new semester, there was no accessible entrance. I missed my first class. Freeze. My impairment? Still the same. My disability, however, had changed for the worse—I was not able to attend class because there were no accessible entrances to the building. While a handful of accessibility concerns remains, McCool is now more accessible (at least to people using wheelchairs) as it includes three accessible entrances.

Considering this social model of disability, Johnson helps the reader clarify and understand the goal of a disability awareness day. She provides tips on how to get the intended message to the target audience while avoiding any “unintended consequences.”

“Disability Awareness—Do It Right!” is a must-read for anyone involved in planning an effective disability awareness day that focuses on change. Thank you Mary Johnson. Thank you.

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.

From coast to coast, kindergarten to college, it’s that time again. That’s right Stair-haters, it’s school time. My brother and I got moved in to our apartments on campus this past Saturday. Classes begin a week from today. I’ll be using this week to get books, set schedules, break in the new attendants, get parking decals, blah blah blah. That’s just side stuff to me. This week is really about getting adjusted to being more independent. The summer spoils me. I get lazy. I don’t have very much responsibility in the summer. I have an attendant who stays from early in the morning to mid-afternoon during the summer. That means I never have to figure out how I am going to do things as simple as eating and using the restroom.

But now I’m “on my own” in a sense. I have a good crew of attendants, but there are strict schedules to plan around, and I have a significant amount of time without an attendant. Spending three hours alone in the morning and five hours alone in the afternoon is a big breath of independence for me—and likely others with similar neurological disorders. No worries though. I have a safety net should something go wrong. Disability Support Services is great at Mississippi State, and I can usually get in touch with one of the six attendants working with me and my brother.

The week before school is a time when the bumps of my complex routine smooth out and become second nature to me. Then I have the physical, mental, and emotional strength to focus on the “normal” (should I say common?) aspects of college life. You know, like classes. And learning.

The week has begun a bit rocky, but the future looks good. Our new attendant will likely have the hang of our little quirks by the end of next week. By that time, the shyness on both sides should be getting better and we will get to know each other. It is a process I go through almost every year. It is a process through which I will always go. I will always need a caregiver. I just hope I keep finding good ones.

So that’s where I’m at right now. I’m looking forward to the school year and it’s affect on this blog. I will be tackling issues that face me and talking to my friends about issues that face them. Should make for some good writings.

See, I hate something besides stairs! I hate the progression of my SMA. Some of the last skeletal muscles (may not be the medically accurate term) to weaken are the ones in the hand and fingers. Lately, I think it’s been getting worse—err, worse than the usual worsening. I’ve been finding it more difficult to type, even on my super cool, thin Apple wireless keyboard. I have a setup that I made for propping my hand up to type, and an occupational therapist is working on copying it with more durable material. I would take a picture of it, but I don’t have a camera handy that I can connect to my computer.

In the next year or so, I am probably going to have to look into some adaptive technology, whether it be hardware or software. On my old Dell notebook, I used Dragon Naturally Speaking a little. It’s supposed to be the best in dictation software, although I didn’t have a lot of luck with it (they have come a long way since 2003). Unfortunately, it requires Windows. I’m on a Mac.

So I Googled searched for “voice recognition mac” on Google and found MacSpeech Dictate. It seems to be the best I can do as far as voice recognition software on Mac OS X. So I may look into it.

Other than that, there’s a good on-screen keyboard for Mac that even has predictive text. It’s called KeyStrokes. In fact, I am typing the rest of this paragraph with it. I’m trying to use an alternate keyboard layout that is optimized for efficiency. I can’t imagine using it all the time though.

Okay, back to typing the old way. Wow, it’s faster.

So what kind of adaptations have you made so that you (or your child) can type and use the computer in general?

Whether it be at a hospital, a doctor’s office, or in the comfort of my own home, I often find myself relying on others to physically transfer, lift, or otherwise assist me in some way. And it usually works out fine. But when it doesn’t, the consequences are not good at all.

I had an attendant about ten years ago who insisted on rolling me so far over in my bed that most of my weight was on her and I was staring at a hard floor below. My objection to this practice was completely ignored. Nothing I said mattered. It was like screaming at a brick wall. Obviously, she was mistaking my comments as “Don’t listen to me, I’m just scared.” I don’t know. But I can understand her actions then more than I can others’ now. After all, I was kid then (I’ve since moved up to “college kid” status).

I run into this problem when I’m in the hospital. Nurses, aids, and other staff will huddle around me, preparing to transfer me to a bed, table, etc. I remember a time I needed to be transferred for a CT scan. I explained that I should park my chair at the head of the table. It would take two people, one on my left and right, to pick me up using the sling I was sitting on. One person would hold my legs. Then we would lift, move down slightly from the chair to the table, and then put me down. Like this:

The proposed transfer plan

Of course, this plan would not make it to implementation. Instead, groupthink happened. The Group decided I should park next to the table, as close as I could get. That would mean that one person would lean over the table to get one side, while the other person would need to lean over my chair as I transferred. Like this:

The Group Plan in Theory

As you can see, it would take a good bit of strength to lift this nonsensical, 178-pound patient. I should also mention that my chair was a power chair, and the above plan would require me to pass over my control, which was on my right (left in the image). This plan didn’t even sound good in theory. And as my essentric stats instructor once said, “The gap between practice and theory is greater in practice than it is in theory.”

But not even the Group-supported plan above would make it to implementation. Instead something happenned. The plan evolved, making it a worse plan, and proving that the Theory of Evolution is bogus (cheap cut). Oh, and speaking of gaps, there’s one in between the chair and the table. I know this is true because in mid-transfer, the lean-over-and-lift factor kicked in and I found myself with one cheek on the table, and one on my chair. Not comfortable. So implementation looked something like this:

The Group Plan implemented

So the moral of the story is this.

LISTEN TO ME! I DON’T WANT TO DIE!

I’m nearing my last year of school. This time next year, I hope to be employed. The taxpayers of Mississippi and the nation have helped me with the cost of attendants and the cost of my education. I am grateful, and I am ready to get a job and put back into the system. That’s the problem though. I can’t seem to find a way off of the system.

I’m receiving insurance and healthcare benefits through Medicaid. While there is at least one Medicaid program that would allow me to earn a moderate salary, all Medicaid programs I have found out about share one financially damaging caveat. I can only have $2000 in savings (more accurately, resources, which include savings, property besides home, extra vehicles, etc.). Furthermore, I was told by a Social Security employee that Medicaid’s policies change from year to year, and I could possibly find myself suddenly uneligible. So there I would be, with only $2000 in savings and no health insurance. And if I were to get a raise or promotion, I might be put over the salary cap.

It is possible that if I had a high enough salary, I could pay my attendants out of pocket. And I may be able to get insurance through my job. The problem is that it takes about sixteen hours of attendant care per day if I were to live completely independently (as I do in college). If I stayed at home, I would need four to eight hours a day. The expenses add up. How can I pay an attendant a decent wage when I may be only making a decent wage myself?

The problem is that the same support I need to get through college, I will need when I get a job. But the programs I rely on now either cease after school or will limit my career opportunities. There’s no transition. Not being able to move forward, should I simply stay unemployed and continue living with full Medicaid benefits?

I believe the solution lies in a compromise of transition. A program by which people with disabilities can work without financial caps, giving them full access to any career opportunities. But it could also minimize the cost of benefits the state would provide. Here’s how it would work. Let’s assume I get a job and I am able to get insurance through my employer. I would have a counselor who determines how many hours of assistance I need (a counselor would also be helpful for making sure people don’t abuse the system). Then, the counselor would take my yearly (or monthly) income and run it through a formula that would result in the amount of financial assistance I would get. It would be assumed that I could personally cover the rest. That’s it. Simple.

It’s a win-win. I get to work and take advantage of any career opportunities, and the state will save money. I would be paying taxes and covering some or most of my attendant costs.

If only I could imagine this program into existance.