First of all, a big thanks to theGSF for what they’re doing with Project Mariposa. People with SMA and disabilities in general benefit greatly from all the advances in technology in the past few decades. Computers made it possible for people with disabilities to work and play in ways that would have been impossible before them. theGSF knows the value of new technologies to people with disabilities and began Project Mariposa with the goal of giving away 50 iPads to individuals affected by SMA. I believe this is going to do a lot of good for a lot of people.

Now, on to the findings of my iPad experiment. I’m going to start by talking about the two ways I’ve come up with for handling the iPad. Then I’ll discuss a few of the primary uses for the iPad that have emerged so far and highlight the apps that have been the most helpful.

Typing with iA Writer in portrait orientation

I can laugh about it now but I was a bit worried whether or not I’d be able to use the iPad without having someone touch the screen for me every time I wanted to do something. My early research indicated that the most feasible solution was to use a Bluetooth mouse. To do that, I would have to go against my gut and Jailbreak it. I was hesitant about it, but in the name of access, I decided to proceed. Now, let me warn you. Jailbreaking your iOS device can be great if you need the extra functionality of third-party apps that aren’t available on the App Store. But it also has drawbacks. For starters, it voids the warranty. It also means that you can’t upgrade your device’s software until the hackers behind the various jailbreaks crack the new updates from Apple.

But because I was just too weak to access all areas of the large touchscreen, I decided to take the plunge. After a surprisingly painless setup, I was up and running with with a Bluetooth mouse, courtesy of the BTstack Mouse app (via Cydia). I was able to prop up the iPad and use apps like Safari, Twitter, and Facebook fairly effectively by pointing and clicking with a mouse. But that wasn’t enough. I could do that at my computer. No, the iPad should be used to inspire creativity. To work and play in ways that a typical computer can’t facilitate. And let’s face it: iPads are meant to be touched.

So I took a glove for which the match had long been missing and cut out the index finger and thumb. With the glove on, I was able to slide my hand over the iPad’s capacitive touchscreen without inadvertently activating it and use the exposed finger and thumb to tap and swipe. But with my SMA, I didn’t have the range of motion necessary to reach enough of the screen. That’s when I remembered a product I purchased several years back. It was called Ergo Rest. It was a product that had not lived up to its potential for me, but suddenly seemed perfect for my current need.

Ergo Rest being used with iPad

The Ergo Rest attaches to the table and supports the arm on a pad atop a swiveling arm. This removes the friction of moving one’s arm across the table. The weight of my arm actually begins to work for me instead of against me because I can can use my own momentum to sling my arm around. The Ergo Rest even gives me enough power to slide the iPad around as needed, effectively giving me access to the entire area of the iPad’s display. With a technique for using the iPad figured out, I was out to discover the amazing things I was sure I could do with iPad.

A barn I drew using Paper by FiftyThree

One of the things I have lost the strength to do that I miss is the ability to write and draw. On paper with a pen. You know, the old-fashioned way. As it happens, the perfect app was released just after I received my iPad. Called Paper by FiftyThree, this app simulates writing and drawing in notebooks with surprisingly beautiful effectiveness. It has a minimal interface and a handful of utensils from a writing pen and drawing pen to a sketching pencil and watercolor brush. The entire premise of the app is to spend time with your ideas. It works perfectly to that end. I can sketch out website layouts, ideas for projects, and doodle for fun. Paper has been a huge hit with me. And I’m not the only one. Paper has shot up the charts on the App Store. The app is free and comes with the drawing pen and the ability to create multiple notebooks. The other four utensils can be bought as in-app purchases for $1.99 each.

Another thing I had been hoping to do on the iPad was write and not be tied to my computer as I am much of the day. I’ve been a fan of iA Writer on the Mac for some time and iA Writer for iPad has been a joy to use. In fact, this blog post was written using iA Writer on my iPad. It doesn’t have a lot of bells and whistles and it doesn’t need them. Writer is to your words what Paper is to your ideas. It’s sole purpose is to help you focus on writing–and that’s all. As an accessibility benefit, it adds a few oft-used punctuation symbols (such as that hyphen and these parentheses) to a toolbar just above the keyboard. It keeps you from having to pull up the extra keyboard screens as often, saving you keystrokes. At the time of this writing, iA Writer for iOS (same app works on iPhone and iPad) is on sale for $0.99. That’s an absolute steal as you’ll be getting one the most popular writing apps on the App Store.

Sketching and writing are two big uses for my iPad, but I’ve also been exploring another. Reading. One of the great things about the iPad is that it can transform into your own personalized magazine. Reading on the iPad is a relaxing activity for me. I can, again this is important, get away from my computer desk and enjoy catching up on articles I’ve saved. My preferred app/service for this is Instapaper. Instapaper lets you save articles for later reading and, when you’re ready, presents them in a beautiful perfect-for-reading format. The service itself is free, though you can get a few more features by subscribing for $1.00 a month. The Instapaper app syncs with the web version and costs $4.99 for a universal app that works on both iPhone and iPad.

I’m thinking about reading a novel on the iPad and seeing how that works (suggestions? The Hunger Games?). The interface is beautiful but I haven’t tried reading for long periods of time.

Now we turn to gaming. My favorite so far has been Angry Birds Space HD. Here’s a demonstration of my mad skills:

I’ve also been playing the space-based and fast-paced real time strategy game, Galcon, that has been my addiction on iPhone for quite some time. There is also a controller called Joypad available for iPhone which you can connect to your computer to play video games. Joypad’s website lists a dozen or more iPad games that support it. So you could prop up the iPad and play these games with the Joypad controller on your iPhone or iPod Touch, though I haven’t tried it yet. If you want a game that requires little physical effort but that is fast-paced and thrilling, I’d recommend Canabalt. It only requires that you be able to tap anywhere on the screen. Along those same lines, if you can only reach a small portion of the screen, try The Last Rocket. It’s a get-to-the-exit game in beautiful retro 8-bit graphics that requires only tapping and swiping, which can be performed anywhere on the screen.

This wraps up the main things I’m currently using the iPad to accomplish. Other notable apps include the built-in Mail app, Facebook, Twitterific for Twitter, WriteRoom for notes (works with Dropbox were I sync wth Notational Velocity on Mac), Day One for journaling, and WordPress for updating my blog.

If you have any techniques, tips, or must-have apps, let me know in the comments.

Axiom 1: What goes in must come out.

Those of you who aren’t crippled may think you already know this, but do you know it? You may have been intellectually aware of this, but does it constitute part of your being? Do you have a personal relationship with it? If you have ever offered a drink to a disabled person who you know well and who you know will not be able to relieve themselves for the next six hours, you do not know this axiom.

Axiom 2: The approximate onset of the urge to relieve oneself can be determined by considering the quantity of liquid consumed, the type of liquid consumed, and the individual’s known biological capacity to ward off said onset (determined by bladder and kidney health and capacity; the retaining of water; blood glucose; external stimuli, such as physical posture, stress and taxation; and other such things.)

This axiom is of most practical importance to disabled people, who must make this calculation at least three times a day at mealtime. In fact, whenever you see a disabled person who relies on assistants to use the restroom, you might as well bet that he is either currently frantically making this calculation or else frantically recalculating to make sure he was right the first time. No, he is not thinking of you or of whatever it is you’re trying to tell him. His mind is eternally consumed with pee formulas such that he meditates on these axioms day and night. In everything else, he feigns interest to keep his problems hidden and to appear normal and decent.

Axiom 3: When you have to go and no one is around to assist you, meditation is key.

New mathematical analyses suggest that repetitive movements actually do not help. Seven out of ten times, it does not yield favorable results, whereas relaxing meditation helps retain proper muscle control and extends the need for Axiom 5 (see below). When you see a disabled man, if he is not doing Axiom 2 calculations, he is pee meditating and may not be responsive. Sometimes, deep insights result from pee meditation. These axioms, for example, were derived by a disabled person in a deep pee stupor.

Axiom 4: It is never wise to ask someone to help you use the restroom who has not yet entered into contract with you to carry out such task. It is like a love affair that never ends well.

You abled people might think this is a given. However, when the stinging urge has reached its zenith, when the rapid current has carried the capacity for decency too far out to sea, it can suddenly appear OK to say, “(Insert colleague’s name here), I’m in need of your assistance in the restroom.” Experienced pee mathematicians know this is not viable for long-term professional relationships. It is actually preferable to go to an alone place and pee oneself, which brings us to the next and final axiom.

Axiom 5: It is better to pee than to burn.

While pee math is oriented to decreasing the chances of finding oneself in dire pee straits, high pee mathematicians observe that no science is perfect. There must be an axiom for when the axioms don’t work, and this is Axiom 5′s purpose. When push comes to shove, push. Anywhere you can get to the most quickly. It’s better for you’re health. A notice to abled people: When you see a person in a wheelchair alone in a dark corner with that aloof look on his face, respect his privacy.

These are the most basic axioms. We judge this to be sufficient for the common lay reader. Furthermore, in order to keep this blog suitable for young children, none of the other axioms will here be published.

For your viewing pleasure:

So with this in mind, I began to reach out to people of this marginalized community to get to know them more. And then I had epiphany number 2: These people are brilliant and amazing. Actually that doesn’t encompass it well enough, the are BRILLIANT and AMAZING. Yes, all caps is needed here.

The people I met are super intelligent, creative, patient, passionate and compassionate. They have discovered methods and tools to accomplish many of their goals, which are usually the same as yours and mine. Yet, despite being able to prove the desire and skill to do what drives them for a living, they are denied employment.

That’s the dream: To build a design and development agency comprised primarily of people that have the skills but are denied the opportunity because something allows the government to call them “disabled”, because they are not.

I’ve been thinking of something like this in the dark corners of my mind. But this is the first time I’ve seen it written down. And you know what that means? It’s more likely to happen! Read more about Gregory’s idea.

Life Rolls On cover

My first reaction was something like, “Whoa, this is like someone taking my thoughts and then publishing them.” It was real. I don’t know many people who know exactly what I go through with SMA. My brother, Matt, knows me inside and out as we often share moments of identical brain activity. Other than that, the people my age that I have talked to who truly understand living with SMA is a tiny, one-digit number. Despite the relentless tragedy that a book about SMA inevitably exudes, I found comfort in knowing that someone else has faced the same challenges I have. But it wasn’t all bad news. Duane’s story was one of hope, acceptance, courage, love, endurance, and positivity.

What affected me the most was the period in Duane’s life just after graduating high school. He was unemployed and lived with his parents. He was struggling with depression because his life lacked purpose. It had been reduced to a life of being isolated in his house only to emerge into the real world for so-called “soda runs” which were less about a craving for soda than they were about a craving for human interaction. He wanted a job and a family even. But those things seemed far out of his reach. At the risk of spoiling the plot, I’ll say he finally did achieve those wishes. But reading about his inner-battle reminds me of where I am in my own life. In fact, I even have his daily soda-runs in the form of having my attendant take me out to lunch. And I hope that, like him, I will find an employer who won’t write me off and maybe I can even run into my own “Kim”, perhaps on one of my lunch-runs. Who knows, right? :-)

The takeaway of Life Rolls On is just that. Life keeps going and you have to roll with the punches. Do what you can, be positive and proactive, and take a leap of faith. As I said before, you still have your dreams. Duane’s book is a case study in achieving them.

See the very raw video explaining the idea.

NaNoWriMo is both an easy and hard thing to define. It’s an event. It’s a challenge. It’s a game. It’s work. It’s art. It’s paradoxically social and anti-social. The event takes place on the NaNoWriMo website and in the computers and notebooks of aspiring writers the world over. The latter is where the work gets done and the former is where everyone goes to talk about it. The site lets you keep a tally of your word count, chat with other Wrimos on the forums, and stay up to date with all things NaNo. It’s social novel writing. And it’s brilliant.

It’s also inclusive. Thanks to the concept of a “home region” on the NaNoWriMo forums, I was able to get in touch with folks in Mississippi who were participating in the event. A few of us got together in person just before the first of the month to talk about our ideas (and then several times throughout the month). It was the first meetup I had been to. It was interesting and fun meeting new people who had the same dorky goal as I did. Something occurred to me. At our table, there sat a lawyer, a high school student, a waitress, an architect, and a web designer. It was a diverse bunch indeed.

And that’s when I realized that I had stumbled upon something special. I had found an activity that was inherently inclusive. At a concert or sporting event I would need special seating and other accommodations. And many activities that I can do are passive. They involve watching and being entertained. But NaNoWriMo is active, and I can participate as well as anyone else can (except the ones who finish their novels; they are totally out of my league). I think it’s important for people with disabilities to have social activities that they can participate in, especially if they spend a lot of time confined at home. NaNoWriMo is a good one because one can talk to fellow writers on the website and one can step it up a notch and attend a local meetup. And a local meetup is usually a small group conversation over coffee, so no worrying about large crowds, weird access problems, and other obstacles people with disabilities run in to.

I didn’t get to the finish line this year, but I had fun and learned things that will help me get there next November. If you are looking for an inclusive, social activity be sure to check out NaNoWriMo. And if you can’t wait until next November, then check out other Office of Letters and Light events, including Script Frenzy, and Camp NaNoWriMo.

From a broader perspective, I see NaNoWriMo as yet another exhibit of evidence that creative pursuits are worth the time and effort and that they can be especially beneficial to people with disabilities. So to all my fellow creatives out there, keep doing what you love. And to all my fellow Wrimos, here’s to a wordy 2012.

The opening keynote on Day 1 was the perfect way to begin a conference — of any kind. It was titled “Dwelling in Possibility: the Values, Beliefs & Habits of Inclusive Schools” and was presented by author and speaker Dr. Paula Kluth. I’ll be the first to admit that as someone who has finally finished the “schooling” part of his life and is mostly focused on employment, I wasn’t expecting to be blown away by a talk about our nation’s school systems. Boy was I wrong! In hindsight, this talk set the foundation for the rest of the conference.

A vision bigger than our vision

Rightly so, Dr. Kluth began with one of the most prolific civil rights dreamer of our time, Dr. Martin Luther King, Jr. Dr. King was a visionary. In his epic “I have a dream” speech, he described what he saw was possible at a time when such things were very impossible. We have come a long way since then. But, sadly, people with disabilities fell behind in the civil rights movement.

It took a while for children with disabilities to gain access to schools (because why would they need to be educated, right?). Even when children with disabilities got access to schools, they didn’t necessarily get access to educations. Even when I was in grade school in the early 90s, kids with disabilities were often segregated from the rest of the kids and educated at a level deemed appropriate for them. And how was this level determined? Standardized assessments? As it turns out, neither IQ nor behavior patterns, nor any other typical data point is a good indicator of how well a kid with a disability would be included. The most reliable indicator for inclusion is zip code.

Yes, where you live is what determines how well you will be included.

Communities, parents, teachers, and administration who have higher rates of inclusion do so because they see what is possible. Had Anne Sullivan not come along and saw what was possible for Helen Keller, what would the world be like today? And what if she had given up after weeks of seemingly useless teaching? But she had a vision. And she stuck with it until Helen had her defining moment.

The point is that if people are willing to see what is possible for a child with a disability, that child has the potential to go far. The most dangerous assumption is that the student won’t learn anything. That he or she won’t understand. The least dangerous assumption is to believe that the student will understand and will learn. Because the reward will far outweigh the risks. We have to have a vision instead of writing people off. And when we think we have achieved everything that is possible, we need to have an even bigger vision.

A SaaS model that allows users to choose from a range of web features that are not accessible to them. Those preferences are saved on the Service. Web developers can check users’ preferences before programmatically implementing the features in question.

For example, before a jQuery slideshow is implemented, a check is done against the Service to make sure that slideshow transitions are OK for the current user (because it could cause motion sickness for some people). This would probably be done in a PHP function. If there is no conflict, a PHP function is run to implement the slideshow. If there is a conflict, a fallback PHP function could be run.

Graceful degradation.

We like the idea of being Macs, not PCs. Computers were boring plastic boxes meant to function as part of an office workspace (it’s called a “desktop” for goodness sake). Macs aren’t just trendy; they embody a creative spirit. From the physical design to the applications they are best at running – Macs were made for artists – and everyone wants to be an artist.

The technology inspired by Steve Jobs has helped me keep going when my atrophied body was trying to stop me. I applaud his accomplishments and am grateful for his help. So here’s to the crazy one himself.