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

This is a film that my brother and I made a few weeks back. It’s a documentary-styled film, with fictional versions (well, partially fictional versions) of ourselves. So I guess, in a way, you could say it is based on a true story.

Brothers from Blake Watson on Vimeo.

Ladies and gentlemen, boys and girls, welcome to the 49th Disability Blog Carnival. Please, do not worry. There is plenty of accessible seating to go around.

Today’s carnival is special to me because it is the first one I have ever hosted. Since beginning this blog in June, I have learned much from the disability blogosphere: one, that it existed; two, that there is a lot of people who are like me and can relate to my experiences. And yes, that was a list—the theme of this week’s carnival. I chose “Lists” as the theme because they are so flexible. You really can have a list about anything! In fact, I even made a list of links that are featured in this edition of the DBC. It is available at:

delicious.com/royblakewatson/dbc-49/.

Let’s start this thing off with an oldie. I’m not talking about Stephen Deal, but rather his humorous “You’re Not Taking Your Disability Seriously If…” list. And while we’re being funny, we might as well have a look at Astrid’s “Cynical List of Things I Learned in a Year in the Psychiatric Hospital.” “If life sucks for you, don’t say it out loud, because it can always suck more,” she warns.

And sometimes, it’s other people making life more difficult. Andrea is sick of all the crap excuses that lifeless, bureaucratic pawns can come up with to suppress self-advocating disabled people and their requests of fairness. Unfortunately, these self-advocates are sterotyped as whiners. And speaking of stereotypes, here’s some “Autism Ain’ts” from Joel at NTs Are Weird, and a protest against a book from aspierhetor.com.

Of similar topic, Ettina from Abnormaldiversity shares with us a list of “major components of how the ‘experts’ create panic and sell their therapies.” It seems they use scare tactics and “rosy promises” (like politicians?) to compel parents to agree to their various treatments.

Laura from Touched By an Alien provides a list of what she thinks are “The essential components” for individuals with Asperger Syndrome. Frida writes a list of clues for able people.

Shiva from Biodiverse Resistance begins a series calles Neurodiversity in Literature that focuses “on characters in novels who are really obviously (what would now be recognised as) autistic or otherwise neurodiverse.” The first looks at Noah Joad from “The Grapes of Wrath.”

Several bloggers have given us lists of tips. Greg from Pitt Rehab gives us a list of useful Web sites. Kara offers a list of charitable causes worth your donations. Dean gives us some tips about helping back pain. And Grace from Disabled 2 Abled has some great tips for “Computer Comfort,” which are relevant to us bloggers.

Rickismom from Beneath the Wings writes about all the lists connected to her daughter, Ricki. She admits that some of her lists—like the “list of skills needed to learn to reach independence”—may be a little “tyrannical.” Erin from School Psychologist Blog Files writes about “The Benefits of an Inclusion Classroom.”

Emma gives us a list of things she intended to do and things she did instead. She also has a cool 101 in 1001 to-do list. And Suzanne from disabilitiyjourney.com writes about the satisfaction of checking off items from a to-do list.

And now you can check off that you’ve read through the 49th Disability Blog Carnival. Thank you for visiting. And thanks to all those who submitted entries. We couldn’t do it without us!

Cheers.

EDIT: Here’s a list (why not?) of submissions I missed.

• Cheryl lists the reasons she why she hasn’t been blogging as much. I would say that number 3, concentration, is a big one for me.

I’m posting a video blog entry today because my hands are especially tired at the moment. For the same reason, I’m not providing a transcript. I apologize for the inconvience. If I feel up to it, I’ll type a paraphrased transcript later. Or perhaps someone will volunteer to transcribe it!

Here are some links of note. The first is the Disability Blog Carnival page, which provides the schedule, themes, hosts, etc. The second is the current blog carnival, which is being hosted at Day in Washington.

More info on the Nov. 13 carnival the date nears. Stay tuned.

EDIT: The frequency of the Disability Blog Carnival is every second and fourth Thursday, not Monday as I said in the video. I think the blog carnival page has a typo on it. I read it wrong.

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 received my usual Friday email alert from The Reflector, Mississippi State’s newspaper. Since my brother is the Opinion Editor (you know, he edits writers’ opinions), I often check out the Opinion section to read the political-finding-of-self Lazarus Austin, the I-had-to-write-about-something-so-I-picked-this Matt Watson, and the satirical breath of fresh air, R.L. Scribner.

But today, I found hapiness in another Opinion writer. Bailey Singletary introduced me to a film called “Darius Goes West,” a film about a guy who has Duchenne Muscular Dystrophy (DMD) and travels from his home in Athens, GA on a cross-country trip to be on “Pimp My Ride.” There is going to be a screening here on campus at Lee Hall. From what I can tell Darius is going to be there, and he and his crew are going to take questions after showing the film.

The project is raising money for DMD research by selling DVDs for $20 each. Out of the twenty, $17 is for DMD research and the remaining $3 is used for making more DVDs. They are also taking donations as well.

It sounds like a great story and the film appears to be rather entertaining. I’ll know more next week. I know that some in the disability community do not like touchy-feely, sympathy-inducing stories about disabled people, espescially when used to raise money. But I don’t think this film is going to rub them the wrong way. I don’t think the focus of the film is going to be about how horrible his disability is, but rather about how life goes on and we make the best of it.

There has also been debate about cures. Some have said that they would not accept a cure because their disabilities help make up who they are. They don’t find cures to be the solution to the “problem.” It isn’t wrong to deny or accept a cure. Individuals have the right to make that decision for themselves. Personally, I would gladly accept a cure. Why? To be frank, my disability will kill me (all else equal). SMA is a progressive disease.

So I hope even the skeptical will give this film a chance, at least on the good chance that it will be entertaining. I’m planning on writing more about the film after the screening. Cheers.

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.

Note: The following article was written by Matt Watson, my brother, as an assignment for an interviewing class at Mississippi State University. Matt and the Smith family have given me permission to post the article.

Joseph Bennett Smith is nearing his second birthday, which promises to be festive, happy, emotional and for many, nothing less than miraculous.

At the age of 20 months, Joseph has already influenced thousands of people, from Mississippi to Ohio. His example helped save the lives of at least two people. For his six siblings, he serves as a perfect playmate. For medical specialists in Mississippi, you might say he has widened an entire field of knowledge for treating a disease, his disease.

Joseph was born with spinal muscular atrophy type I, one of the severest forms of muscular dystrophy. The disease weakens all of the muscles in the body and prevents walking, talking, swallowing and many other daily physical activities.

He lays on his back on the carpet floor of the family’s house, with his head turned sideways, eyes widening and looking every direction for someone to play with. His father believes he would be a “little running-around-playing person” if he could walk.

Joseph undergoes a rigorous morning routine to maintain his health. His parents, Bill and Melissa, spend much of the morning bringing up Joseph’s respiratory secretions to avoid the all-too-familiar threat pneumonia presents to infants with SMA I.

“He got pneumonia; he nearly died,” Bill recalled. “I’ve seen on movies and heard on documentaries and things people talking about hearing the death rattle, and I mean we heard that. We heard that sound. It’s a distinct sound.”

His brothers and sisters, aged 3 to 13, have learned how to use the suction machine that brings up the secretions in Joseph’s nose and throat. Between making funny faces, waving toys in the air and playing a myriad of other games with Joseph, the children casually grab the machine to attend to him.

It was during the Christmas season when the family first realized something was different with Joseph, five weeks after his birth. The first doctor to diagnose him couldn’t honestly give the family any hope. He told them the child was going to die in about three months, the fate of many SMA I patients.

For a while, the parents did not accept the diagnosis. They talked to friends and attributed Joseph’s symptoms to a possible case of botulism. Bill recalls trying everything to “fix” the situation and increase Joseph’s strength.

For Melissa, the fight was deeply spiritual. She remembers vividly the night Joseph was diagnosed, the night she believes she encountered the devil.

“I could feel the breath from [the devil’s] nostrils on my face,” she recalled. “I heard a voice saying, ‘Where is your God now?’”

Even after the tests that confirmed Joseph’s diagnosis were completed, Bill and Melissa kept to their hardheaded mentality, strengthened by a solid conviction that only God could decide their child’s fate. Since the day she says she realized Joseph was God’s child because God created him, Melissa says she has put everything into God’s hands.

Her husband says going through Joseph’s diagnosis and being there at times when Joseph almost died were the most intense times of his life. But he has always been very pragmatic about his son’s health.

“We’ve gone through doctors at the ICU tell us to basically get ready for him to die, because he was looking like that’s where he was headed, and to decide who we wanted in the room with us,” he said. “But at the same time, as hard as that was to deal with, we still believed that if we could get over the hump of this pneumonia, we knew there were doctors that had successfully extubated these kids once they had been on ventilators.”

Those doctors were not to be found in hospitals in Jackson. Understandably, Bill said, doctors at University Medical Center had never given much thought to being able to treat SMA I effectively. After communicating with a doctor in Wisconsin, a specialist at UMC was able to get Joseph past pneumonia to thrive again.

“We’ve gotten really good medical care. We’ve gotten some really scary advice from doctors that turned out to be wrong,” Bill said. “It turned out to be a different approach that they didn’t know about. And so we’ve taught them a lot.”

After dealing with Joseph’s pneumonia, doctors have been more prepared to treat other SMA I patients, Bill says.

At only 20 months, Joseph’s personality seems to beam into the souls of nurses and passers-by in public places. Bill and Melissa say they often meet complete strangers who come up to them to say that something special is going to happen with their baby. It is unlike anything they have seen before, and they have had six other children. They believe it’s something spiritual, something inexplicable.

They haven’t decided how they are going to celebrate Joseph’s second birthday. They invited 2,500 people to his last birthday party—family, friends from their church and other supporters who keep up with Joseph on his CarePages profile on the Internet. They say they are thinking about having a smaller, more intimate celebration this time.

However they decide to celebrate it, Joseph’s birthday will be a blessing to the family and a rare steppingstone in treating a troubling disease.