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

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?

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.

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.

I read this great article on A List Apart offering 10 Tips on Writing the Living Web. In tip number three, the writer offers this bit of advice.

Don’t rush to replace a good design: you will grow bored with it long before your readers do.

Well, if you have been to my site before, you’ll notice that I simply ignored this rule. And I told myself I wasn’t going to. But I did. But I had a good reason for doing it, besides being bored with the old design.

I had a complaint about the readability of the site. The main body text was light gray on dark gray. Admittedly, the contrast could have been a little better. The navigation menu’s contrast was arguably worse.

Bad contrast in old menu

This site is about disability, which makes it even worse to have such bad menu. So what did I do?

Introducing Andrea, the most beautiful WordPress theme ever made. Or at least that is what Lucian Marin, the theme’s designer says about it. While it is a bold proclamation, it definitely gives a lot of WP themes I’ve seen a run for their money. It’s simple and clean, which I’m a sucker for. But even in its simplicity, it creates a mood. In fact, it allows the content to set the mood, which is the mark of a good design.

Besides its pleasing aesthetics, it solves some usability issues for me. The body text is bright and draws the focus of the reader. The menu has better contrast than the old one. The comment links draw more attention because they are inline with the heading. Visitors to the site should find it easier to spot, and use, the comment links.

On a lesser note, I liked being able to incorporate my stairs logo into the design. It was quite painless to customize.

So let me know what you think. Is it easier to read? Is there anything missing from the old theme from a usability standpoint? I appreciate your feedback. We will get back on disability topics next update.

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?

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.

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 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.