brbroadw

What would really boost ratings

brbroadw — Tue, 07 Oct 2008 03:19:00 GMT

Olympic gold medalist Misty May-Traynor had a hunk of a cast on her foot tonight when she appeared on ABC's "Dancing with the Stars." She apparently tore an Achilles tendon while practicing the jive last week. How cool would it have been for her to complete the show in a wheelchair and have a professional from a wheelchair dance troupe be her partner? I know, I know, it's a crazy idea! If I'm going to be a gal who isn't a dancer, at least I can be a dreamer.

Happy anniversary!

brbroadw — Mon, 29 Sep 2008 14:23:00 GMT

Sept. 29 is the one-year anniversary of my first Disaboom blog post. In that entry, I questioned whether I was a more likable person with my wheelchair than without it. I'm still not sure that I know the answer, but I grow increasingly certain that I do lead a rich life as a person ala wheels. That realization is probably more important than how others judge me.

In the past year, I have:

--Made new friends (through Disaboom, Facebook, LinkedIn and in-person meetings)

--Renewed a few old friends

--Earned a graduate degree

--Coped with the loss of some dear hearts

--Celebrated holidays and special occasions in fine style

--Set and accomplished goals

--Crossed off goals that weren't right for me

--Cheered, cried and complained

--Maintained my health as much as possible with a progressive condition

--Traveled around my state

--Read some good books, watched some fun TV programs and happened upon some cool Web sites

--Boosted spirits

--Blogged consistently for a 12-month period

--Secured a steady stream of freelance writing assignments

--Offered any help I could for people in a pinch

--Wondered and discovered

--Smiled big, toothy grins over surprises designed specifically for me

Others could probably dash off a litany of more exotic feats; still, my list isn't too shabby. I'm not sure what the next year will hold for me, but I feel content knowing I have spent a year living life forward. As long as I can, I'm going to keep heading in that direction. If you think I'm likable the way I am, then I invite you to join me in eating a requisite slice of anniversary cake.

Taking my wheels into the wild blue yonder

brbroadw — Wed, 24 Sep 2008 19:08:00 GMT

Is it right to say I'm trying to become a "nature connoisseur"? What I mean is that I'm really making an effort to appreciate scenic beauties. Sounds easy enough, I'm sure-to look around me and "oooh" and "aaah" about any natural sensations that cross my radar.

It seems like my disability makes the practice rather challenging. That could just be an excuse on my part, but the reality is I haven't had opportunities to climb mighty oaks, to jump in rain puddles or to get lost in a field of golden sunflowers. Nature doesn't come naturally to me in my wheelchair. For that reason, I have a hard time fitting myself into the hiking-camping-"outdoorsy" mold. Instead of admiring the sparkle of stars, I'm the type of person who would be swatting at mosquitoes.

Having just read Laura Hershey's brilliant essay, "Along Asphalt Trails," I feel like I need to give nature another chance. She described visits to the Grand Canyon and Yosomite that were vivid and insightful. She saw deer, Sequoia trees and a snake, but most importantly she recognized that every one of us, no matter our body type, contributes to the greater environment.

If you click to Hershey's story, be sure to notice the accompanying illustration by Julie Murphy. Also, enjoy some extra related content by visiting Hershey's blog.

Of course I know to marvel at a blazing sunset or a huge cascade of water falling in gushes over a cliff, but I want to awaken my senses to less obvious splendors. I want to learn to distinguish differences among bird calls, to know with authority the direction from which the wind is blowing and to believe it is positively glorious to have an untamed spirit.

See this about Sarah Palin’s glasses

brbroadw — Sun, 21 Sep 2008 22:10:00 GMT

Chances are likely that you have already made up your mind how you are going to vote in the upcoming U.S. Presidential election. You have heard the candidates' agendas plus a gazillion other details about them that maybe did or didn't interest you.

The fascination with Alaska Gov. Sarah Palin's glasses has particularly astounded me. If I have the story straight, she wears rimless glasses from designer Kazuo Kawasaki's 704 series. The frame color is 34 gray. They cost about $400. Her lenses are a custom rectangular shape. Here's the stunning part you may not have realized...Kawasaki is someone with paraplegia as a result of a 1977 auto accident when he was 28 years old.

I think it is incredibly cool that he is using his design talent to make assistive equipment serviceable and stylish. Kawasaki is demonstrating how the two attributes need not be mutually exclusive of each other. The designer, who also serves as a professor in Japan, even has pieces of his work in the collection of the Museum of Modern Art. His Carna wheelchair, with its titanium frame, is named for the Roman goddess said to have power over thresholds and entrances.

In describing his thoughts about his own wheelchair, Kawasaki said: "I realized that by designing a wheelchair that closely met my own physical needs I could create a functional design that other people with similar needs might use."

Kawasaki's ingenuity helps me see clearly how capable our disability community is to recognize a need and create an eye-catching beauty of a solution.

I’m ready for a virtual field trip

brbroadw — Fri, 19 Sep 2008 03:28:00 GMT

I was excited to read the news this week that the Smithsonian will digitize its full collection--all 137-million objects in its possession. Of course, as the story stated, the online material will be a tremendous educational resource for children. It surprised me, however, that the USA Today article did not mention the benefit this endeavor will be to members of the disability community.

I'm definitely a museum kind of gal. From art and architecture to the National Zoo, I would probably be happy touring every exhibit the Smithsonian has to offer. Getting there, however, would take monumental planning on my part. I would need to persuade someone to accompany me to Washington, D.C. I would need to make sure the exhibits I wanted to see would be accessible for my viewing pleasure. I would need to worry about whether I had the stamina to see such an extreme number of amazing sights.

These matters need not trouble my mind now, because eventually I'll be able to view them all on my trusty Compaq monitor. I realize it won't exactly be the same as going on a whirlwind Smithsonian Institution field trip (maybe I can still do that some day!), but I imagine the digitalization will allow me to view objects from different angles, read a bit about the objects I'm studying and maybe even discuss my impressions with others.

It looks like I may finally get my chance to be a "petite sophisticate ala wheelchair" and say in a distinguished trill, "I spent the afternoon touring the Butterfly Pavilion." What would suit your fancy?

Standout or camouflage?

brbroadw — Wed, 17 Sep 2008 02:48:00 GMT

It depends on the day and my mood how I want to portray my disability. Sometimes, I'm all about downplaying it and minimizing any aspect of it that I can. I choose clothes that cover my extreme skinniness. I communicate mainly through e-mail (as opposed to via telephone) so my speech can be easily understood. I generally have someone nearby me who can run to the rescue and offer help if an awkward situation arises.

While I typically prefer to act as though my disability is a non-issue, I really admire people who treat their conditions with a little extra flair. You've probably seen the kind of people I mean...maybe you are one of them? They ride in neon chairs. They wear bells on their socks even though they are unable to stand on their feet. Their model vibrant bandannas that make statements to cover heads without hair. I love their spirit. When I'm feeling bold or sassy, I have their kind of courage. On those days, rather than conceal my disability, I accentuate the parts of me I am unable to change. I shift from a reserved attitude to a celebratory mood; it is a relaxed, easygoing state of mind.

I think the creators of the Vibe hearing aid by Siemens probably have the right idea. It comes with a rainbow array of snap-on covers, so the device can be any color from shocking pink to a leopard print. The marketing materials suggest the hearing aid has the potential to become a fashion accessory.

Tell me...what's your style...to standout or to camouflage?

A post card from my trip

brbroadw — Sat, 13 Sep 2008 21:14:00 GMT

I have just returned from a little getaway with my family to Mackinac Island. I didn't really think there would be much to say about the trip from a disability perspective.

We try to get there once a year, because it is a charming place with quaint Victorian architecture, pristine nature areas and a few divine restaurants. Motor vehicles are not permitted on the island, so locals and tourists get to their destinations on foot, by bicycle or via horse-drawn carriages.

I believe in the past few years island residents were embroiled in a controversy because people who were able-bodied were using mobility scooters to convey themselves around Mackinac. If I am remembering correctly, most people felt this use (which was not a medical necessity) diminished the appeal of the island. On our recent trip, it seemed like I saw more scooter-users than in previous years, but the number was not remarkable. Mackinac officials must have devised some way to curtail the speedy wheels.

What I did notice was the number of people who noticed me and interacted with me in interesting ways during our stay.

First of all, nearly everyone was incredibly friendly (perhaps because they were either vacationers or people catering to vacationers.)

Some places (shops/businesses) were not really accessible, because they are old structures. I almost didn't mind waiting outside, though, because I enjoyed all kinds of greetings. Carriage drivers nodded, waved and shouted out "Hellos!" People introduced me to their dogs, some of whom were being conveyed in strollers. Shopkeepers allowed my mom to carry glass merchandise outside for me to see. They offered to lift my chair inside if I wanted to enter.

The UPS carrier who happened to be a fellow with a form of dwarfism made friendly conversation with me.

In the morning, the breakfast chef made a flourish of a flip with my eggs and treated me to a complimentary omelet. Most surprising of all was when Jessica, in a T-shirt shop, rang up our purchase and then proceeded to entertain me with a magic trick.

She pretty much summed up the trip for me: surprising and memorable!

Do you see what I see?

brbroadw — Tue, 09 Sep 2008 22:36:00 GMT

I love the idea of people with disabilities managing feats they never dreamed possible. So the Yahoo! headline about blind photography really caught my attention. According to the video story by CNN reporter Paula Hancocks, two instructors in Israel (Kfir Sivan and Iris Darel-Shinar) taught nine adult students with varying degrees of eyesight how to click pictures with a camera.

It may sound incredible, but the photographers use indicators such as the smell of water, the heat of the sun or the sound of voices to gauge the distance and angle from which they want to capture their photos.

In some cases, the clarity is blurry. Other times, part of the subject is missing from the picture. It was remarkable for me to see, however, these "imperfections" often gave the photos an artistic perspective. When viewing the photos, I kept appreciating the beauty of being allowed to understand in a small way how someone without eyesight experiences the world.

The instructors are commonly asked: "Why are blind people taking pictures?"

Their answer: "Coping with an activity so closely related to vision challenges them. The blind take pictures to document events like any one else does. The printed photo is for them a piece of memory, of an experience that could be shared with others and clung to many years later."

I browsed through the gallery on theblindphotographer.com Web site and was impressed by the dazzling art. Those who visit the online exhibit will find self-portraits caught in mirrors, close-ups of compelling content and expansive shots of landscapes.

It is enough to make me want to see myself taking on a new challenge. Do you have the same feeling?

Accessible cookies?

brbroadw — Mon, 08 Sep 2008 20:08:00 GMT

As my disability progresses, I'm gradually losing my ability to enjoy the convenience of fast food. Most of what I eat needs some prep work before I can insert it into my mouth. My muscles are becoming increasingly affected by spinal muscular atrophy, so swallowing presents significant challenges. My bites need to be extremely small. Meat generally needs to be processed. It isn't too realistic, in other words, for me to chomp on a slice of pepperoni pizza or wolf down a Whopper.

I still have a few options that I can eat on the run. Wendy's baked potatoes are usually a favorite selection. I like them with loads of sour cream or cheese sauce, as unhealthy as those accoutrements may be. Some Taco Bell items, like the Mexican pizza, are fairly manageable as long as I'm mindful about carefully consuming my meal.

If I want to take fast food home to eat, my choices are multiple, but that almost defeats the beauty of fast food. It isn't fast when I have to have my honey mustard grilled chicken snack wrap shredded to smithereens before it becomes fuel to keep me on the go.

Now, however, I'm delighted as can be with McDonald's introduction of fresh-baked chocolate chip cookies to their menu. Have you tried them? They're scrumptious! They usually serve them up warm. I can break off bite-size pieces of my new addiction and they practically melt in my mouth. Lucky me...if I'm with someone who makes a pit stop to the golden arches, I have a legit reason for a sweet treat. It's my duty, of course, to celebrate accessible cookies.

Extraordinary for an extraordinary reason

brbroadw — Sat, 06 Sep 2008 23:14:00 GMT

This Washington Post story about Stevie Wonder being named the winner of the Library of Congress' Gershwin Prize for Popular Song struck me as extraordinary. In fact, I read it three times before I even believed what I was reading. The journalist wrote the full story (about 350 words) without once mentioning the recording artist is blind.

Of course, we all know Wonder isn't able to use his eyes to see. For the record, he has been blind since his early childhood as a result of a condition called retinopathy of prematurity. However, I love the fact that at this stage in his life (Wonder is 58), we all care more about his accolades than his disability.

"The Gershwin Prize was created to honor an artist whose creative output transcends distinctions between musical styles and idioms, bringing diverse listeners together, and fostering mutual understanding and appreciation," said Librarian of Congress James H. Billington in a press release. "Stevie Wonder's music epitomizes this ideal."

Among his many accomplishments, Wonder has earned:

--32 No. 1 R&B and Pop singles

--49 Top 40 R&B and Pop singles

--25 Grammy Awards

--the Grammy Lifetime Achievement Award in 1996

--an Academy Award for the 1984 hit "I Just Called to Say I Love You"

--induction into the Rock'n'Roll Hall of Fame in 1989

--the distinction of being the youngest honoree of the Kennedy Center Honors

It is an impressive list for anyone, with or without a disability.

One of my ultimate hopes, I suppose, is to find something I do so well that my physical differences aren't even a factor. Wonder is a Motown great who has done that now. The presentation of his latest award will take place in the Great Hall of the Library on Feb. 23, 2009.

Learning from experience

brbroadw — Fri, 05 Sep 2008 19:37:00 GMT

All this week I have had a grateful feeling...particularly grateful that I didn't have to deal with the trauma of going back to school. It is strange because I was a good student, and school was a place where I excelled. I liked learning. (Actually, I still like learning.)

My teachers were kind to me; they encouraged me to think creatively and to challenge myself. I always started school with new clothes and fresh supplies. Plus, it was good to see my set of friends again after a summer of missing them.

For all of the good points about school, though, getting settled into the new school routine each year seemed tremendously challenging for me with my disability.

The simple acts of shuffling my textbooks or pulling homework from my folders were matters I had to find ways to address. It usually meant I needed to work up the courage to ask a peer for help, which made me feel awkward and inferior. In classes where I was mainstreamed, my teachers needed time to understand my physical differences. I didn't have the strength to raise my hand to answer a question. I needed to write with a pen as opposed to a pencil because it required less pressure to make a mark. My homework took me twice the time it should to complete because my stamina plummeted in a hurry.

Making sure I could carry the appropriate academic classes and get the assistance I needed was a scheduling puzzle. I remember coming home to my parents in tears because it looked like I was going to have to attend my chemistry labs without an aide to help me perform the experiments.

For all of you, parents, who have children with disabilities now, just hang in there! I'm relieved to know I don't have to live through all of that turmoil again. However, it definitely was a learning experience that prepared me to problem solve and even gain access to Bunsen burners.

The hype about HIPAA

brbroadw — Wed, 27 Aug 2008 21:29:00 GMT

The article, "Who's reading your medical files?" certainly is scary. It makes it sound like we are on the verge of a crisis where our most personal health information could be disclosed. In fact, as I understand it, our details are already being released without many of us realizing it or comprehending the consequences.

I'm someone who sees more than my fair share of "white coats," and I have signed countless of those Health Insurance Portability and Accountability Act (HIPAA) forms mentioned in the news story. I do not personally know any people who have had their health records distributed against their will, but apparently it can happen in a flash or, more accurately, with the click of a mouse. I'm leery about the safety of my data regarding blood counts, test outcomes and immunizations.

Still, I have to wonder who are these people so eager to get hold of my hemoglobin level and swallow study results? I can think of far more compelling details about me than those boring numerical facts. I generally have more pressing concerns than whether someone wants to hold my weak cricopharyngeus muscle against me.

In fact, I have had a few occasions where I have had trouble getting my own medical information released to me. Now, that scenario is really frustrating!

My family practitioner is offering a new service that allows patients to view their medical files online. People who register for a user ID and password have supposedly "secure" access as well as the ability to have e-mail communication with the doctor. This capability puts me more in control of my own health care, so I'm considering giving it a try.

What do you think...is it safe or am I exposing myself to too much danger?

Dancing candidates for the cast

brbroadw — Mon, 25 Aug 2008 21:49:00 GMT

The next celebrity cast of "Dancing with the Stars" has been named. With the little bit I know about the people who will be competing, I am not aware of any obvious disability angle. That disappoints me just a bit, because show producers have been so inclusive of members from the disability community. I was expecting them to give someone who has low vision a try. Let's see...who would my candidates be?

Tom Sullivan might be interesting. He has written books, appeared on TV, starred in films, plus he has a motivational focus.

Erik Weihenmayer would be another top choice. He is the first and only man who is blind to reach the top of Mount Everest.

Eddie Timanus was the first contestant who is blind to appear on "Jeopardy!" Then, he appeared on "Who Wants to be a Millionaire." Why not "Dancing with the Stars" next?

Marla Runyan, diagnosed with Stargardt's disease at age 9, has been an Olympic athlete in track and field events. It would be a thrill to see her change from running to dancing shoes.

I realize it has to be tricky finding candidates willing to participate. The celebs have to devote a significant amount of time to practicing and getting their moves just right. Life with a disability can be tricky enough without having viewers across the country observing the learning of a new skill.

Maybe producers just need a little extra time to find the next dancing star with a disability. I'll keep watching the program. It would be cool if they had a wheelchair dance troupe make a special guest appearance.

Science plus miracles, please

brbroadw — Mon, 25 Aug 2008 02:03:00 GMT

Leading my life with a disability has given me a deep appreciation for the certainty of science.

When doctors diagnosed me with spinal muscular atrophy, they could tell my parents generally what was going to happen. I looked like a happy, healthy tot, chubby and full of vitality, but it was clear to medical professionals that my nerve signals were not reaching my muscles, meaning my muscles would steadily weaken from disuse. They described how I would fail to reach the expected physical milestones of crawling, standing and walking. Eventually, tasks as basic as breathing and swallowing would become laborious.

The "white coats" were, more or less, right. In the case of a sudden, dire incident, I can imagine, an emergency medical team would be equally as adept at assessing the situation and presenting the cold, hard realities to concerned loved ones in waiting rooms. They are trained to deliver harsh reports at the most critical of times.

As much as I trust the inevitability of science, I was still glad to read this article indicating plenty of people still believe "divine intervention can revive dying patients."

Miracles are more challenging to grasp or document than facts that can be proven. The essence of a miracle, however, is that it is unexpected and beyond explanation. It may sound like "hooey phooey," but when I think of all the friends who have come into my life, the opportunities I have had and the dreams that keep me alive, my experience hardly seems hopeless.

It's fine to accept science, but doesn't it make sense to keep our hearts open enough to admit small miracles?

Indiana woman works with support to be independent

brbroadw — Sat, 23 Aug 2008 16:55:00 GMT

Mollie Noble, 27, of Indianapolis, Ind., loves her job working in sales support for JC Penney.

"I just don't want to be a person to boss people around," she said. "I want (to) do more things."

As an employee with Down syndrome, she credited part of her success to the Noble of Indiana organization she discovered when she graduated from high school. The nonprofit's supported employment service helps her by sending an employment consultant to make sure her job is going well.

"Noble helped me to be on my own...to be independent," said Mollie. "I have been making my own meals and I keep a checkbook and I do my own groceries and I make my own transportation with IndyGo." She added, "I love being independent because I can do more stuff and be creative."

In terms of hobbies, Mollie described, "I really love doing scrapbooking, reading, singing. The big thing I like to do is I love being with my family a lot and I love to do the art."

Mollie understands the importance of being a contributor in her community, too. With this as her mindset, she serves as a board member for Noble of Indiana. She is someone who represents the organization's core values: dignity and respect, integrity, excellence, community, self-determination, accountability, innovation and creativity.

"I really think the world of people. We can help more people like me. We can help people out who have a disability or an ability." Mollie concluded, "People with Down syndrome can make a difference; like me, I have been doing a lot of things."