[dis]Ability: An Introspective Look at Ability Awareness

Since taking on this job as social media manager for the Portland State University Kiwanis Camp senior capstone project, I have come to see my ignorance, an ignorance I was aware of but never really motivated to eradicate. Sure, I was “aware” of people with disabilities and thought I could sympathize, but beyond helping out with the occasional fundraiser, my life was never affected by theirs, so I didn't bother to learn. I find it strange now, and, of course, shameful that I settled for false sympathy when I've always believed that the key to happiness is self awareness, and the key to self awareness is learning as much about the world as possible. I have to know about others if I am to know myself. Yet in spite of this belief, I had never thought to learn about the disabled community. I thought I already knew enough, knew what I needed to know for my own purposes.

It's not a great feeling realizing that you've essentially ignored a large portion of the population until something—a job, in my case—forced you to educate yourself. But it is also a relief to know that there is still time to learn, time to become one less person living in ignorance.

That being said, I have also recently come to know that while I have been working to increase and promote disability awareness in myself and others, I had no idea that there was such a thing as ability awareness. To be honest, when I first heard the term, I thought it was a strange euphemism for disability awareness, something “nicer” in a world afraid of political incorrectness. However, it is no euphemism. It is exactly as it sounds: being aware of people's capabilities.

Back when I interviewed Jimmy Lorang, he mentioned that some of the campers love to joke around, and one of the jokes they like to play is not telling counselors that they are quite able to, for example, tie their shoes or get in and out of a wheelchair without assistance, and some of the counselors don't think to ask those campers what they do and don't need help with. When they find out, they might ask, “Why didn't you tell me you didn't need my help?” and get a giggled response, “Well, you never asked.” While many of us are focused on what a person cannot do, we forget to see what they can. We are not ability aware.

Diana Pastora Carson, ability awareness educator, describes ability awareness as a journey toward understanding, accepting, appreciating, and embracing disability within society. “[W]e are in no way 'looking beyond the disability.' We look at it directly, individually, with respect. Not with discomfort. Not with shame. Not with pity. We acknowledge it. But it is not our focus. Our focus is the person.”

And then Carlson seemed to write directly at me:

“In order to understand the disability experience, we must focus on ourselves. We often play a big role in the disability experience. Our attitudes and assumptions, actions or lack of actions can disable a person as much or more than their disability. Most of the time, we are completely unaware of our impact in the lives of others.”

Ability awareness is not only accepting, understanding, and embracing disability, but also accepting, understanding, and embracing ability. It means knowing what we are all capable of. Often we think that it is enough to know what a person cannot do so that we can assist. But a person is not defined by what he or she cannot do. A person is defined by what he or she does and can do.

Degrees for the Disabled

Winter break is half over, and I have to admit, I am ready to go back to school. I miss going to class and being busy. I'm one of those people who can't stay at home all the time without getting restless. I'm thankful that I'm able to separate school from home, but for some people, online school is a good alternative to traditional school, especially if it is difficult to leave home. I would recommend Portland State to anyone (I have fallen in love with it so quickly!), but people with disabilities may find it more convenient, and perhaps necessary, to take classes in their own residence.

Certain things must be considered when deciding to go to online school. Not all classes and formats work for all people, especially when it comes to finding courses that meet certain needs. While being able to learn from home is a major advantage, not all online classes are user-friendly for students with disabilities. For example, an instructor may promote a live class format with scrolling text that students have no control over. Visually impaired students who use screen readers or refreshable Braille displays may have trouble with this. Videos without captions can be problematic for students with hearing loss. Assignments that require students to view Web pages with flashing ads and lights can trigger seizures in people who suffer from photosensitivity or other disorders, and live chat classrooms, discussion threads, and white boards can make it hard for students who use adaptive devices. Many of these obstacles can be dodged by getting in touch with your professor and discussing accommodations. And it will totally be worth the effort! Why? Because education is awesome and fulfilling and everything that is good in the world. Also, once you've got that degree nicely framed on your wall, there are some pretty lucrative careers to be had. Check this out:

1. Computer Careers: A-Tech Review claims that information systems provides the best career opportunities for people with physical disabilities--jobs that can be done with little accommodation and they pay well too. The National Association of Colleges and Employers found in 2007 that starting salary offers for computer programmers averaged $49,928 per year.

2. Legal Careers: Law is another field wide open to the disabled, and you can customize your career to suit your interests. Whether you prefer working behind the scenes or in a courtroom, from your home or in an office, there are interesting career choices available and online programs to go with each. Salaries range from about $37,000 for junior secretaries to $75,000 for senior paralegals to six figure earnings for lawyers. Not bad, right?

PSU is beautiful but not always accessible.

3. Design Careers: Have a creative side? Online degree and career training opportunities abound--degrees range from photography to graphic, interior, and clothing design. Actress Dawn Wells (AKA Mary Anne from Gilligan's Island) designed a line of attractive clothing using Velcro for easy fastening after caring for a disabled relative.

4. Nursing Careers: Nursing careers actually provide good opportunities for those with physical challenges. And your own experience may make you a better nurse than less-empathetic co-workers. Many with hearing and other disabilities manage successful nursing careers. Organizations like the Association of Medical Professionals with hearing losses (AMPHL) provide guidance and support for their members. Registered nurses begin their careers with associate's or bachelor's degrees or nursing diplomas. Those with a BSN command an average starting salary of nearly $50,000 per year.

5. Management: If you acquired a disability later in life, you probably had a career when it happened--maybe a career that you really loved. If you can't perform that job any more, why not run the whole show? A bachelor's degree in management can help you stay in your chosen field and even move up the career ladder. And your hard-won expertise won't be wasted. Managers' salaries depend largely on their chosen industry but you can usually expect a nice pay increase when you earn a management degree.

So go for it! Earning a degree and furthering you education is well worth the effort. I'm looking forward to the sense of accomplishment I'll feel when I have a college diploma in hand. Everybody should have the opportunity to have that feeling, right?

Hear, Hear! A Call for Music

I got my information from a TED Talk by Charles Limb and from an MIT Technology Review article by Michael Chorost.

Science and technology have made amazing progress in terms of aiding the hearing impaired. In the 16- and 1700s, the best science had to offer were hearing trumpets that funneled sound to the ear from a larger opening at the opposite end of the device. Later on, in the 1800s, attempts were made to make hearing aids more subtle, though perhaps a bit ridiculous, like ear-shaped devices with small funnels that one would wear like earmuffs. Todays cochlear implants are a vast improvement over, say, walking around with two sets of ears. Unlike hearing aids, which amplify sounds, cochlear implants directly stimulate the auditory nerve which sends sound signals to the brain, bypassing any damaged portions of the ear. Their primary function is to help people hear spoken language. This, of course, is great and tremendously useful, but CIs still have many challenges to face. One of these challenges is allowing its users to hear music.

Today's cochlear technology relies on the semantic-specific nature of spoken language. What matters is that a message is communicated correctly, not that the message sounds nice when spoken. In more visual terms, the letter “t” can be written many different ways depending on a person's handwriting or a font used on the computer. The visual aspect of the “t” is unimportant. All that is needed is the recognition that it is the letter “t” and not any other symbol. This is the way spoken language works, and so that is what cochlear technology uses to aid in hearing and communication. Music, however, works almost oppositely. What is music if not something that sounds nice?

This graph shows the difference between the sound levels and frequencies needed to hear spoken language and those needed to hear music.
CIs only transmit what is needed to hear language.

One of the main problems with CIs allowing people to hear music is a matter of pitch perception. Most people with standard hearing can differentiate between pitches that are 1.1 semitones, the smallest pitch interval in Western music, apart. CI patients' pitch perception can be off as much as two octaves. This is a considerable difference. Another problem arises with the inability of most cochlear implant users to discern between various instruments. With a device that focuses on the fundamentals of communication rather than sound quality, things like warmth and timbre are not transmitted.

Researchers at the University of Washington and the University of Iowa are working on breaking down the components of music to help CI users hear it. Their computerized test called the Clinical Assessment of Music Perception (CAMP) divides the very complicated unit known as music into three parts: pitch, timbre, and melody. The perceptibility of each component can be tested by CI patients, and these tests have shown the presence of the ability to perceive pitch. The tests can also show progress over time, perhaps with advances in technology. For example, if test scores improve, there is a good possibility that music perception is actually increasing amongst CI patients.

Beethoven managed to compose beautiful music in spite of his profound deafness. If he accomplished so much with a simple hearing trumpet, imagine what can be done with today's ever-evolving technology. Both music and human beings are extremely complex, but beautiful in their complexity, so to get them to work together in (are you ready for it?) harmony will be an amazing accomplishment. The universal ability to hear music may be a long way off, or that technology might be available within the next few years. Who knows? Either way, I'm excited. Music is just one of those things that can't be explained. It has to be experienced firsthand, and everyone should have to opportunity to feel it.

Click here to watch Limb's TED Talk.

Click here to read the full MIT article, "Helping the Deaf Hear Music".

Why Art is Awesome

This summer, Kiwanis Camp counselors read Double Take by Kevin Michael Connolly before beginning their sessions at camp. I recently finished reading it, and it got me thinking about art and the important role it can have in people's lives. In his book, Connolly, who was born without legs, illustrates the reactions his condition elicits in others and the way he decided to react to them in turn. Throughout his entire life, Connolly has been subjected to the assuming stares of strangers all around the world and discovered art as a way of dealing with those unwanted reactions. For him, photography became not only a means of artistic expression but also a sort of self-indulgent therapy.

I love art in its various forms partly because, aside from the aesthetic appeal, art allows one to say what sometimes just can't be put into words. Art is powerful and personal, and it has a way of communicating that is beyond verbal expression. Connolly could have told people, “No matter where I am in the world, people everywhere look at me the same way,” but those words don't have the same weight as his photos, which express the same thing.

Some people seem to come alive when they are able to express themselves through art. I posted a couple of pictures of art done by artists with disabilities on the MHKC Facebook page because I thought the motives behind various people's art was interesting. For example, Neil Marcus, a performing and visual artist with cerebral palsy, uses his various art forms to express movement in a way his body won't allow him. Jessy Park, another artist I posted about, was diagnosed with autism. She was nonverbal, but she was able to express herself through her vibrant architectural paintings. Others, like Peter Longstaff, a foot painter, show through art their ability to overcome physical obstacles to create something beautiful and meaningful.

At Mt. Hood Kiwanis Camp, a portion of camp time is dedicated to art projects, including tie dyeing t-shirts, putting on performances, and making wish boats—handmade boats with campers' wishes written on them that are ceremoniously sent across the pond at the end of camp. Campers also work on putting together camper journals, in which they can use both words and pictures to communicate their camp experience with their families. These art projects are very individualized and are the least structured activities at MHKC, giving campers (and counselors) the necessary freedom to express themselves.

Drawing from a camper journal

The arts also serve as excellent and fun teaching tools. For example, visual arts like painting and drawing reinforce motor skills. Written arts such as poetry give people a chance to share their feelings without restriction while improving writing and vocabulary skills. Performing arts also improve motor skills and can provide a social setting where people can interact with one another, build problem solving skills, and learn about working together as a team. The arts allow people of all abilities to create something of their own and take pride in both the process and the product of creation. They can also serve as a way to rid oneself of negative emotions or express positive ones. Plus, art is something people of all backgrounds and experiences can relate to and share with one another. Art connects us.

What are your experiences with art, either in creating it or experiencing it secondhand? Do you use some form of art as a means of expression or communication? Share your art with us! Post a photo of your art or share a poem or whatever else you can think of on our Facebook page.