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.

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.

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.

Mississippi State University is home to a small group of students with disabilities who seek to improve the college experience for other students with disabilities. We are called United Students. With the new school year beginning, we are preparing to have our first meeting and begin coming up with ideas.

I want us to do more this year. Over the last year or two, we’ve narrowed our efforts to two main events during the school year.

• In the Fall semester, we host an outdoor event associated with National Disability Awareness Month (October). We usually have a variety of information to hand out, along with various activities. Some of the activities have included letting people complete tasks in wheelchairs and experience simulation goggles (impaired vision). I have questioned the effectiveness of some of these activities, but in the end, the group decided on implementing them.
• In the Spring semester, we host a luau in appreciation of those who regularly assist people with disabilities. We invite readers, writers, attendants, and others to the Mahalo Luau (”mahalo” is the Hawaiian equivalent of “thank you”). In addition, each of our members (about 10) invites one faculty member who has been particularly helpful and or influential. We had about 40 guests in total.

In addition to these events we discuss accessibility issues on campus, and generally support each other as students with disabilities.

I’m fairly happy with our Mahalo Luau. We do need to tighten up on invitations and planning, but the event is fun and appreciated by our guests.

However, I am not satisfied with our disability awareness event in the fall. Not that we didn’t try, but that our event wasn’t effective. I want to do more than sit at a table in the sun and pass out literature about a handful of disabilities. I don’t mean to be harsh, I just think we can do more.

So I’m going to be meeting with the other officers and our new faculty adviser sometime in the very near future to discuss our approach for the coming year. We will also be having our first meeting soon. I’m hoping we can get some brainstorming going on to find a more effective way to increase disability awareness on campus.

What is disability awareness, anyway?

In the simplest terms, I would say that the disability awareness of a person is his or her ability to treat a person with a disability like any other person. That is the goal I would like to achieve with our awareness fair. I want to bring down social barriers between people with and without disabilities. When people with and without disabilities on campus feel just as comfortable around each other as with anyone else, my desired goal will be reached.

I realize this isn’t a scholarly definition, but it’s what I think disability awareness is. What do you say it is?

A disability awareness how-to manual

That’s what I need. And actually, I have one. I just to need to find it. But I would like some ideas from the community, especially ideas that you know, from experience, work.

Our disability awareness events need not take place all at once. We can do several things and spread them out. One year, we had an outdoor awareness fair during the middle of the day, and had a panel discussion that night. We had somewhat low attendance, but that was more of a PR failure. I liked the idea because it was a more intimate atmosphere, and our personalities could really show. I wouldn’t mind trying this again if we could come up with the right questions and topics.

Any ideas?

A strange thing happened in the bookstore today. I joined some friends for coffee and conversation. What could be strange about that, you ask? Well, I noticed we all had disabilities and used wheelchairs. It became momentarily awkward to me. All the disabled people were hanging out with each other. Almost like we didn’t have any other friends and our disabilities required us to be friends.

Of course, none of that is true. But I couldn’t help but think that maybe other people in the store were “summing us up,” so to say. I did ponder a bit (whilst ignoring my friends… sorry) about how people of different cultures tend to, for lack of a better term, group together. The vast amount of diversity on campus makes it easy to see this “phenomenon” happen. So why were a bunch of disabled students hanging out together at MSU’s Barnes & Noble Café? Because of their culture.

A lot of people on lots of disability blogs all over the place can tell you more about Disability culture than I will ever hope to know. I’ve always felt uncomfortable with the idea. Like denial or something. But today it was painfully obvious. Disability culture, whatever it is, is real.

This thought has sent me spiraling back to my first day I joined Disaboom.com. That very day, I participated in a few discussions about the social model of disability compared to the medical model of disability. I won’t get in to all the details, but it was an eye opening discussion for me. Now I’m not going to say I’m a full supporter of the social model or the medical model. I will say that the medical model is not a legitimate opposing viewpoint. It seems to me it is just a piñata created by proponents of the social model so that they can bash it. But the social model has some good points. But that’s for another post.

These thoughts were running through my mind as my friend talked about the people in her past who told her she would not graduate from high school, or attend college. In my peripheral vision, I saw a guy at a nearby table, within earshot. I couldn’t help but imagine what he might be thinking, seeing my friend talking about overcoming “oppression.” I’ll most likely never know.

What are your thoughts about disability culture?

I was taking a look at my blog stats this morning. Someone found my blog searching for “Why we hate disabled people.” It always cracks me up when I read search terms that people have used and found my blog.

I Googled the phrase out of boredom and curiosity. Here is an excerpt from the post I found on the deviantART forum.

[Disabled people] are just so slow and i think how much of a burden they are to their care-ers. just think how much money and emotional strain and stress that their parents must get. and to add to that, the parents would loose friends, possibly loose their jobs to pay for and look after their “child”.

You can imagine how the following discussion in the comments went. Or you can read all 33 pages of them like I did (well, I skimmed).

Seriously, I wasn’t all shaken up or anything, there’s much worse things going on besides a dumb Internet kid. But it was just so ridiculous. Even if it was satirical or meant to be a joke, it was just nonsensical.

So I reported the user to the deviantART’s helpdesk. He should get kicked off just for being a jerk.

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.

A couple of ideas have been floating around in my head for a few days now. I recently received a comment on my post (well, my brother’s) about Joseph Smith. The commenter is the mother of two sons, one of which is three and a half years old and has Spinal Muscular Atrophy (SMA) type 1, the same disease that Joseph has. She has posted a lot of amazing resources, photos, and videos. It has inspired me to write a piece on SMA. I will be doing some reading on that, so expect to see that up soon. I’m also planning to update you on the progress our power soccer team is making. I’m waiting to get my hands on some video that was recorded last practice.

What I am going to share with you now is the funny experience I had at an optometry clinic today. My brother and I are usually together, so we book doctor appointments in back-to-back time slots. We loaded up in the van this morning and headed to our 11 and 11:30 appointments. We checked in, signed some paperwork, then we waited.

After a few minutes, someone came from the back and called, “Watson.” “Which one?” we replied. That’s when they noticed there were two of us and we both used power chairs. Then an episode of mass confusion ensued. “Umm… Thomas… uh… your room isn’t ready yet, it’ll be one moment.” I assume there was only one exam room that was accessible. Finally, my brother (Thomas, we call him “Matt,” his shortened middle name) gets the go ahead to go back.

I continued to wait for about 15 minutes. Then another lady came from the back and called, “Watson.” Although I was sitting right in front of her, she was scanning the room, looking for a Mr. Watson. My chair clicked when I began to move toward her, and she realized I was Mr. Watson. She looked confused. And the closer I got the more perplexed and frightened her expression became. I’m not kidding. It was a face of utter doom. She looked to a lady behind the counter. “Doesn’t he…,” her voice trailed off and she looked back at me, “Your room isn’t ready yet, we’re waiting on your room to free up.”

Fancy service. A clinic that let’s you know your room isn’t ready yet. :-)

Today marks my first Sunday of writing I hate stairs. God has blessed me richly. If it wasn’t for Him, I would not be where I am today. Through the work of many brothers and sisters in Christ, as well as many others, sufficient funds were raised to build me and my brother a wheelchair accessible house about seven years ago. About a year before that, funds were raised to help us replace our 1979 Ford Club Wagon with a brand new accessible van.

It can almost be overwhelming to think of all the ways in which the Lord has blessed me and my family. I don’t know why we always doubt the Lord and His promises.

28″And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

We sometimes become so worried about these needs that God knows we have need of that we miss the bigger, more important promise.

36 “Therefore let all Israel be assured of this: God has made this Jesus, whom you crucified, both Lord and Christ.”

37 When the people heard this, they were cut to the heart and said to Peter and the other apostles, “Brothers, what shall we do?”

38 Peter replied, “Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit. 39 The promise is for you and your children and for all who are far off—for all whom the Lord our God will call.”

My grandfather used to say that if it wasn’t for the second part of verse 39, he wouldn’t have a shot at heaven. “The promise is for you and your children and for all who are far off…” He said he was “far off” on three counts. First, he was not a Jew, so he was far off in ethnicity. Second, he was born in Rome, Mississippi, far off in location. And thirdly, he lived almost 2000 years since the promise was made, putting him far off in time as well.

But the promise was made. It was made.

Beginning a blog about disability has sparked an interest in what other people with disabilities are writing about. I’ve been putting together a collection in my del.icio.us bookmarks tagged “stairhaters.” Now that I have seen what all is out there, I now realize that what I thought was a unique idea is, well, not all that unique. But that’s OK. I’m looking forward to getting connected with the disability blogoshpere.

So I thought I would share with you some of the things I’ve been reading in the past few days.

The first is brokenclay.org/journal. It’s interesting, intelligent, and the mood feels right. It’s also one of the longest running blogs I’ve come across (since 2001). I enjoyed the post “Two Encounters.”

The new blog that I have been reading the most is cherylberyl, who blogs on Disaboom. Believe it or not, she has a way of venting frustrations that helps me relate to the problems she has. She has been struggling with the idea of using a power chair. It’s funny, because even though I’ve been using a power chair since age 3, I seem to relate to the experience she is having. Oh, and if you are going to hate a power chair, this is how you should do it. The posts can be long, but they’re worth it.

It seems that no matter where I happen to find myself in the disability blogosphere, I keep seeing one name. KaraSwims. Kara blogs on Disaboom and on her own personal blog. Topics on her blog vary, but she is not shy at all about discussing the way disability affects her life. She even finds herself talking about it too much.

Another interesting read is How to be an Inspiration, from Stephen Deal, a writer from the UK. I haven’t been reading it long, but from what I can tell, it is thoughtful and funny.

So this is what I’ve been doing for the past few days. Coming soon will be a feature written by my brother about a family who has seven children, one of whom has Spinal Muscular Atrophy Type 1. In addition, I may give some thoughts about some childhood experiences.

Hasta luego.