Disaboom KaraSwims Blog

The power of persistence in Rudy's quest to finish the Ironman triathlon

Kara — Wed, 14 Oct 2009 03:57:00 GMT

Rudy Garcia-Tolson, 21, is a two-time Paralympic swimming gold medalist. I was honored to swim to swim on his team for the 2004 Games in Athens. His comeback swim to win the 200M Individual Medley gold medal was one of the most exciting races of the meet. Four years later, Rudy went to Bejing and successfully defended his medal. Since then, Rudy's set his sights on a new goal: Becoming the first bi-lateral amputee to complete the Ironman in Kona, Hawaii.

The Kona Ironman is an extraordinarily grueling triathlon competition for anyone, but its especially challenging for someone with a physical disability because there are no adaptations to the rules or time cut-offs. The triathlon consists of a 2.4 mile open-water ocean swim. Rudy's description that, "there were arms and legs everywhere," lets me know there's NO way I'd even survive that portion. I hate being roughed up in the calm chlorinated waters of an indoor pool. Add sea life to the equation and I'm a no-go!

After the swim portion is 112 miles of biking up and down the insane hills of Hawaii. Rudy has specially designed bike legs, but they don't power themselves. He uses nothing but his glutes (aka butt!) to bike. Rudy's been training in the desert to prepare for this leg of the race. He's been slowed though in recent weeks by a stump infection that mandated he take some time off his legs to heal.

[Photo caption: Rudy Garcia-Tolson is pictured riding his bike during the second leg of the Ironman in Kona on October 12.]

Unfortunately, Rudy barely missed the cut-off time on Saturday to continue to the third and final leg of the Kona Ironman. The running portion is the length of a marathon (26 miles). Following the race, Rudy faced the outcome with pride. "I have no excuses," he said. "In the end it was an honor for me to participate in the event and I'd love to have another opportunity to cross that finish line." I've witnessed Rudy's training and work ethic firsthand and I have no doubt that he'll do just that and more.

Even greater than Rudy's athletic accomplishments has been his ability to mentor and positively influence so many other young children with double amputations. At almost all of our events, there'd be a tiny fan in the stands with his or her family who came out just to watch and meet Rudy. At the time, he was also in a Disney channel commercial. That led to another interesting batch of Rudy fans!

Persistence isn't a new virtue for Rudy. In many ways, it'll be a larger dose of what he does each and every day that will push him past that finish line. This setback will make that victory even sweeter.

Service Dogs and Veterinarian Bills

Kara — Wed, 07 Oct 2009 21:00:00 GMT

My husband and I are the proud and happy owners of two dogs, Bailey and Obie. I can't imagine our lives without them. They're cute, smart, loving, and expensive!

Bailey and Obie are both members of the bulldog breed. Obie is a Frenchton (a French Bulldog and a Boston Terrier) and Bailey is a Bull Boss (an English bulldog and a Boston terrier). Bulldogs are known for their loyalty and strength, but not necessarily their health. Bailey is a trained service dog who can pull my wheelchair, pick up items, and turn on and off lights. She's enjoying a life of mostly retirement right now, but could snap into duty if I were to break a bone.

We've been exceptionally fortunate to maintain our dogs' good health most of the time, but it takes work. Here are a few tips we've learned along the way:

Preventative Care

First and most important to keeping your service dog on his or her paws is staying on top of preventative care. This requires organization. Most vets send out reminders or make phone calls when your animal is due for vaccines or a checkup, but owners should always keep records to ensure there are no gaps in care.

Communicate

Much of what I've learned about caring for animals as a person with a disability has been from other people with disabilities. I struggled for the longest time to successfully guide my chair and my dog from the left side because that's what the able-bodied world teaches as the proper heel position. Until finally, someone said, "Why not use your right hand?" I've also learned about ways to keep fleas away, training techniques, and how to respond to people in the public about their reaction to us.

I also find it my duty to communicate to other service animal and dog owners things that I've learned along the journey. A few weeks ago, I warned friends of an unseen danger in the metal pin that closes kennel doors. My Bailey impaled (over an inch!) her chest into the pin when she fell into it jumping down from her kennel, which WAS stacked on Obie's kennel. She had stitches and a drain, but has recovered. Although Bailey enjoyed her high rise, their kennels are no longer stacked!

[Photo caption: Bailey, our brindle Boston Bulldog, in all her cuteness sleeping with her stuffed squirrel.]

Accidents

It's a disturbing thought, but there's always the possibility that your service animal could become sick or injured. Changes in health require immediate attention and that attention comes at a cost. For some people, their service dogs are mandatory to their mobility. A temporary replacement device or person will be needed while your companion heals. The cost associated with unexpected illnesses or injuries is also difficult for owners to bear.

Finances

A reality for anyone considering a service dog is that these invaluable companions involve ongoing expenses. There's food. Our dogs have sensitive stomachs (aka They will return the cheap stuff in the form of vomit!) so we buy Nutro. For two medium-sized dogs, it's around $35 a month. Preventative care, including vaccines, were a HUGE expense for our family, but we've found a way to cut costs without sacrificing care.

We use the Banfield Vet Clinic within our local Petsmart. Both dogs are enrolled in their Wellness Plans. For a monthly fee, the cost of their vaccines and comprehensive exams/checkups is spread out across the year. In addition, we get free office visits. We don't have to hesitate taking them in because if it turns out to be nothing, it costs nothing. We also get 20% every additional service or medication outside the realm of preventative care. That adds up.

Yesterday, Obie went in for his twice-a-year comprehensive exam. We dropped him off in the morning and they ran all kinds of tests. In the afternoon, they thoroughly clean the dogs' teeth while they are under anesthesia. While Obie was knocked out, he also had a surgery to enlarge his nostrils. His nose holes were too small. His snoring and snorting was cute, but he couldn't breathe. He's rather embarrassed about his "nose job" but is healing well. Without our Wellness Plan, the bill would have been $1036! With it, it was $182. Normally, there would have been no cost but we decided to get this surgery that we've been considering since his anesthesia was already paid for as part of the plan.

[Photo caption: Our Obie Nugget, a cream Frenchton, is shown.]

Since we signed up for Banfield's Wellness Plans, we've saved over $3000 in vet costs. Also, the care is exceptional. I have to admit...I was snobby about a vet clinic in a store. I didn't think the vets would be as well-trained as those in a private practice. I've found the opposite. Obie's surgery was done by someone who specialized in bulldogs while in vet school. The staff there knows our dogs and us by name. They're amazingly friendly-and good in crisis situations. I was a nutcase when Bailey impaled herself!

Other Options

I did some research on what resources are available to help people with disabilities with the costs associated with service dogs and pets. Here's what I found:

For guide dogs who assist people with visual impairments, there's a Veterinary Financial Assistance Program. It can provide up to $250 to be applied to one vet visit.
California has a Service Dog Special Allowance Program. People with disabilities can receive $50/month to offset the costs of their service animals.
The Humane Society has an extensive list of resources broken down by breed, program, and region. Take a look!

Also on Disaboom:

Service Pets for Vets

Service Dogs Help People with Disabilities Gain Independence

Guide Dog Opens New World of Mobility and Possibility

Illusions of Inclusion

Kara — Mon, 05 Oct 2009 21:31:00 GMT

Today's post is the first of several intended to contribute to Disability Awareness Month.

I have mixed feelings about the dedication of months or days to oppressed members of our society. It's frightening to think that the thought, dialogue, and work would stop when these time frames elapse. That's my theoretical side. My practical side supports any and all positive steps towards awareness.

In the last few decades, society has made some gradual progress in its treatment of people with disabilities. This can be seen in the adoption of civil rights laws to protect and empower people with disabilities. And there are plenty of real world examples of progress in the workplace as people with disabilities make valuable contributions to our world each and every day. I view the progression as stepping through tolerance, towards acceptance, and ultimately to the facilitation of inclusion.

Inclusion differs from other attempts to demonstrate equal treatment because it involves ACTION. The most brilliant lecture on the value of accepting people with disabilities or increasing diversity in the workforce doesn't achieve inclusion. It goes beyond the belief that inclusion is the right thing to do and involves the reality that inclusion takes work. Inclusion is often an ongoing process. It's more than hiring a person who uses a wheelchair. It's more than speaking to a friend with a learning disability about how they could join your study group.

[Graphic caption: Colorful illustration of people holding hands with text that reads Diversity and Inclusion: The Keys to Success]

I recently attended a seminar led by Neil Glickman. He's a psychologist who has dedicated his career to improving the mental health treatment options available to people who are Deaf or hard of hearing and have language and learning challenges. I learned a great deal and a particular phrase has stuck with me almost two weeks after the event. Dr. Glickman spoke on the trouble with "illusions of inclusion." The most common example, said Glickman, occurs when a hospital, a school, or a workplace hires a sign language interpreter and assumes that the mere presence of this interpreter means inclusion has been achieved. Sign language interpretation is tricky business! It's not word-for-word interpretation that might occur between people speaking two different verbal languages. Sign language interpretation involves careful translation between two different cultures. If an interpreter is provided, but no other efforts are made to include the person with a disability, inclusion is almost never achieved.

Illusions of inclusion involve the unseen barriers that keep people with disabilities from reaping the rewards of full access to physical and social situations. The fact that others believe inclusion is available is almost worse than the realization that it's not there at all. Illusions of inclusion in my life have involved appointment to a position with the unstated expectation that I first had to disprove doubts of others before I could start on equal ground with my able-bodied peers. Other illusions involve physically accessible professional networking groups where few people are able to comfortably talk with me. There are a number of illusions within personal relationships as well. People who fully accept aspects of your disability *except* the possibility that you would consider having children, adopting, or starting a family in other ways.

What are the illusions of inclusion in your life? I understand these are taboo topics that are hard to point out and even harder to talk about. If we don't start differentiating between successful acts of inclusion and the illusions of inclusion though, we'll never make those illusions realities.

Here are some thoughts shared by friends on Twitter to get your started:

Jelena Woehr (@jelenawoehr) discussed the fear that as a woman, person of color, or person with a disability you might be the "token" person at that workplace. It's a "sidestep to inclusion," she said, "We're not discriminating. Look, That person works here!"

Tracy Hurlbert (@supercrip) also shared an example of an event that was held to raise money for an elevator that would improve accessibility of a hall. The event, however, was held IN the hall so people with disabilities were unable to attend!

What are the illusions of inclusion that you face?

[Graphic caption: The word INCLUSION is written above a circle with symbols representing different groups of people. Symbols representing men, women, and people with disabilities are shown.]

9/11 and Disability

Kara — Fri, 11 Sep 2009 18:26:40 GMT

Image by Storm Crypt via Flickr

As the world remembers September 11, the question is circulating, "Where were you?"

It's a question that my mother's generation answered about the assassination of JFK and a question that most in my generation will never be unable to answer.

[Photo caption: The New York City skyline is shown with the Statue of Liberty overlooking the city.]

Where was I?

I was a Junior in college at Wright State University. It was the start of a new school year and I was involved in a flurry of student activities. Like New York, September 11 was a beautiful morning in Dayton OH. I slept slightly later than usual and ignored the 3 missed calls on my cell phone before my brief drive to school. I was expected to work the "Survivor Games" as part of my Campus Recreation job. Ironically titled, the "Survivors Games" were intended to be a fun way for students to meet each other and orient themselves to the new year.

When I got to campus, it was a stunning experience to see the expressions of fear on the faces of my supervisors, mentors, and friends. We gathered around a small television to watch the early coverage before we all hurried back to our dorms and apartments. The rest of the day was marked by rumors and fear. Some said that the Wright Patt Airforce Base was an identified target for the next terrorist attack. When a small plane crashed nearby, the fear in our community was palatable.

I went to a small vigil led by my campus Catholic ministries that evening and called everyone in my family several times. I was two and a half hours from home, but it felt much further away. I shared an apartment with 2 close friends and I remember we spent the entire night sandwiched together on a small couch watching the coverage. There were so many people that deserved my grief and prayers that it felt like I didn't have enough to give.

What if?

Since I've learned more about the tragedy on September 11, I can't help but put my self in the place of the terrified victims. What if I had been on the 87th or even the 8th floor when the planes hit? Reports confirm that elevator service stopped almost immediately. I'm fairly skilled at stair scooting, but the risk of being trampled or not being fast enough to get out would have been significant. When I read of the heroism on Flight 93, I worry that I wouldn't have been much help. I think of Colleen Fraser, a fellow little person, who lost her life and I'm comforted by her friends' statements that they are sure she was among those who hatched the plan to protect so many lives. They say so because, "she never sat for injustice."

[Photo caption: Colleen Fraser, a little person and advocate for people with disabilities, is pictured smiling.]

How have I changed?

More important than the question of "Where were you?" is the question of "How have you changed?" My changes include the practical: I try never to ignore multiple missed calls from family members now. But they also represent a change in the value that I attach to my citizenship. Living through September 11 made me exceptionally proud to be an American. It emphasized the honor I was given to compete for my country in the 2004 Paralympics and I try to remember that we never know what the next day, hour, or minute will bring.

I invite you to share where you were and I challenge you to tell us how you have changed.

How to pee standing up while sitting down

Kara — Thu, 10 Sep 2009 05:27:00 GMT

Little did I know the topic of urination has recently sprouted up a fierce debate in the walking world.

It all started with a little device called the "Go Girl". It retails for around $5 and promises to open the gates for women to enjoy the apparently innumerable joys of peeing from the upright position. The device looks like (and apparently has been confused for) a pink hat, but it's basically a funnel that improves a woman's ability to aim.

[Photo caption: The Go Girl device is shown next to the portable container it arrives in to customers.]

Seems reasonable. So where's the debate?

According to a few bloggers, the marketing folks of Go Girl were a tad overzealous at a recent blogging conference. The real debate though lies in whether or not people actually use this thing!

Because I know you're curious, there are instructions and several videos on the Go Girl site that explain how this device can be used. Basically, you make a seal between yourself and the funnel, aim, and pee. It's intended for people who are camping, totally grossed out by restrooms that are available, or completely unable to find a bathroom at all.

One of the marketing angles interested me because rumor has it that this entire ingenious idea was born from the needs of people with disabilities. Women recovering from hip/knee surgeries and those that had trouble using a traditional toilet were the target audience before Go Girl's founder took her products main...stream.

I suppose there are the lucky few that have certainly benefited from this contraption but I have my doubts for the rest of us with disabilities. For one thing, it would take some incredible balance to hunker down or hang on to something with one hand and hold onto the Go Girl with the other. Then there's the danger of "breaking the seal" or letting the funnel overflow. Both of which I hear have disastrous results! A pal of mine, Kate the Great, from Cincinnati Women's Bloggers gave her Go Girl a whirl in the shower. Not an option for me and while it has absolutely nothing to do with my disability, I'm also not comfortable washing it in the dishwasher (as the Go Girl site suggests)!

[Photo caption: The Go Girl device is shown with arrows indicating key points made by the company. The points include: mess free, medical grade silicone, unique tip design, and compact design.]

In the end, maybe I'm missing the point. Sure-I've had many a pee crisis. I grew up in Kentucky-home of farm parties, football games, and sometimes even outhouses, none of which are known for accessibility features. I'm a "find a way, make a way" kind of girl though. When given the choice-or even not-I generally prefer to do nearly 90% of my waking activities from a seated position. From what I've read and seen so far, Go Girl isn't about to change that!

What are your thoughts? Could Go Girl work for you? How have you survived some of life's most troublesome pee crises?

More on Disaboom:

You too can pee out of your bellybutton

The Middle of the Night Pee

On bathrooms II

What would you do for a job?

Kara — Mon, 07 Sep 2009 22:54:00 GMT

Long before the recession, people with disabilities have faced an uphill climb to get a job. It's not only about choosing a career path that fits, getting an education, and acing an interview. There's also the sometimes insurmountable obstacle of overcoming discriminatory hiring practices. What's most frustrating to me is the elusiveness of discrimination. It's so tangible and so obvious that you can feel it from the moment you roll into the office. People have become more sly and cautious about their statements though so we're rarely left with any concrete evidence that disability was the underlying reason we weren't hired.

[Photo caption: Man in wheelchair dressed in suit and carrying briefcase on his lap shakes the hand of an able-bodied man in a suit.]

Daniel Ruben is a new grad with a disability that has taken a nontraditional approach to landing his first job out of school. Faced with the looming need to return to his hometown, which has far fewer accessible opportunities for wheelchair users, Ruben has been sitting on street corners holding a sign that reads, "Temple Grad. Looking for work. Have resumes." Ruben graduated with honors with a degree in sports journalism. A few of his professors provided comments for the article to support Ruben's skills, dedication to his career, and energy for life.

At first glance, Ruben's approach looks extreme. It's certainly humbling, but what if it's effective? My own recent experiences searching and successfully landing jobs has proven that the traditional routes frequented by people without disabilities looking for employment might not work for us. Right now, I'm balancing three part-time jobs in addition to my growing writing business. On Labor Day and every day, I'm extraordinarily thankful for my opportunity to work. I love ALL of my jobs and that, too, is an incredible gift.

My personality and my field of work wouldn't fit well with Ruben's approach, but I do think he's onto something! We have to step, stomp, and roll outside of our comfort zone to encourage other people to get outside of theirs and hire us! Here's what has worked for me:

1. Joining community organizations and committees related to my field. Making valuable contributions, networking, and then stating your desire to find employment.

2. Get the word out! It can feel embarrassing when a job hunt drags on but keeping your wish for work a secret will only hurt yourself. By letting friends, family, and associates know, I was the first to find out that a friend was leaving their position for a promotion. The very next morning I cold called the friend's supervisor and sold myself for the position.

3. Apply. Apply. Apply. Just as there's usually something going on behind the scenes of our interviews, job boards aren't as clear as they seem these days either. Many jobs are posted but the funds for that position are frozen. I've only recently heard from a few positions I applied for months ago. One of these resulted in a job that I'm really enjoying. I'm thankful that I didn't stop applying because I didn't get an answer from the vast majority of places to which I applied.

My only criticism of the article on Daniel Ruben is the bit where he's quoted to say, "I'm definitely better off than other people with disabilities. I can walk a short distance with crutches." Besides the argument I routinely make to people that I'm much quicker and able to do more in a wheelchair than my walker (with which I could easily be confused for a slow-moving turtle), it's a sad state when we have to sell each other out in an attempt to be considered competent. Maybe Ruben was misquoted. It's happened to me when interviewed. Or maybe he believed that this clarification would push him further from us and closer to them. Either way-this mindset isn't helpful for people in favor of equal employment opportunities.

I hope that Daniel Ruben is hired-not based on his identity as a person with a disability, but because he seems well-qualified and is enthusiastic to work. I admire his tenacity and believe we all have a place in the workforce.

So how about it...would you be willing to stand on a street corner with a sign for a job? For a day? Week? Year!?

Here's more on jobs from Disaboom:

Disability Jobs: Freelance Writing Online

Put Yourself in the Path of Opportunity

Job Networking: Fast Tracking to the Job You Want

Twitter and disability: The good, the bad, and the funny

Kara — Sun, 23 Aug 2009 04:17:00 GMT

Because my 70+ page dissertation proposal wasn't enough to amuse me this Saturday evening, I decided to conduct some very informal research on twitter. If you're still one of those people who say they just don't get twitter, here's a video and here's an article to get you up to speed. Since the search function has improved on Tweetdeck and on my phone app of choice, Spaz, I've developed the habit of searching for various disability terms: disabled, disability, wheelchair, and even *gasp* handicapped. Hey-sometimes you have to think in the language of other people think to understand what other people really think.

Sometimes I stumble upon a news article that I hadn't seen. Here's one I found tonight about a businessman who is extremely satisfied with his decision to recruit and hire people with disabilities.

[Graphic caption: Twitter bird logo with a speech bubble that has four circles and a heart.]

Sometimes I find someone I'd like to follow. Tonight I found BipolarSense. She's a mental health advocate who has bipolar disorder. I enjoyed her insight and am looking forward to reading more from her.

Usually I perform a random search, get a glimpse of what's going on, and move along. Tonight I wondered what would happen if I actually responded to some of the good, bad, and funny tweets about our community that I read?

If anyone wishes to replicate my (poorly designed) research approach, I first strongly recommend using a search that updates in real-time. It lets you see the conversation flow and helps you recognize what events might have tipped off a particular disability-related subject across the twittersphere. For example, tonight a show called "Acceptance" aired on Lifetime. One of the lines in the show mentioned that a character with a learning disability had a 3.7 GPA. This quote (and variations) popped up on twitter over 20 times in the last 15 or so minutes alone. I don't think people maliciously made this statement a joke, but all were clearly misinformed that GPA determines whether or not a person has a learning disability. In just 140 characters (the limit of Twitter), I could see they thought the idea someone could have a high GPA AND a learning disability was preposterous.

Here's where I like to hope that my voyeuristic twitter ways may contribute to correcting misconceptions and busting stigmas. I didn't want to overwhelm my followers, but I chose around 5 of the people who had tweeted this myth and stated (in my calmest twitter voice) that a learning disability has nothing to do with GPA. No one responded, which wasn't too surprising. I intentionally try to word educational bits in nonconfrontational language, but sometimes that leads people with really nothing left to say in return. Not the best for dialogue, but these people are strangers so I suppose I made my point.

It's imperative for me to choose my twitter battles. There's plenty of hate and ignorance that goes deeper than I can impact with 140 characters. Plenty of tweets are probably well-intended, but I can't help but laugh...or scratch my head. Like this one: #shoutout to all the disabled/handicap people out there who are NOT discriminated by their disabilities. People use hashtags (#) on twitter to join in a larger conversation so this lovely twit was piling this well-thought shoutout onto others. Many shoutouts indeed to people who are not discriminated by their disabilities!?

Quotes are another common facet of Twitter. What was tonight's hot quote spreading like a wildfire across more than 30 tweets in the last 15 minutes?

"The only disability is a bad attitude." by Scott Hamilton

I can't hide or sugarcoat how I feel about this quote. I'm sure skating Scott Hamilton meant for it to provide motivation for me to buck up, be cheerful, and put on a happy face. But in reality, it places blame and casts disability as something negative that's as easy to change as an attitude or mood. No-I didn't tweet my thoughts on this quote. 140 characters would only give me time to look bitter and over-analytical. Only you, the privileged few, can read how I really feel.

It should be noted that I don't take every quote, tweet, or twitpic (pictures on twitter) quite so seriously. I found these pretty hilarious.

[Photo caption: Image of a staircase with a painted sign indicating a male, female, and wheelchair icons and an arrow pointing up the stairs.]

[Photo caption: Three concrete stairs are shown with three concrete blocks stacked on each stair. The blocks are adorned with the universal wheelchair symbol but they are clearly not making this barrier accessible!]

And finally there's this...

[Photo caption: A road sign is shown with a horse pulling a cart carrying a wheelchair sign. Below that another sign reads "For 150 yds]

There's plenty to be learned from Twitter. It's a place to advocate, laugh, and communicate. This week I heard a quote about social media about someone who hesitated to jump on the bandwagon. She said she finally realized, "That not participating wouldn't keep me invisible, it would just mean I wouldn't be heard." Being heard (in its many forms) is an empowering feeling. Joining and actively participating in social media is one way to ensure our community is included in all aspects of society.

If you'd like to follow me on twitter, you can find me here. Feel free to leave your Twitter name below if you'd like me (and my readers) to follow you.

I'm especially interested in what you think of this post. Would you be interested in semi-regular updates on my twitter spy findings?

Questions that cross boundaries

Kara — Tue, 18 Aug 2009 20:32:00 GMT

As the summer winds to a close, my fall schedule is bursting at the seams. In addition to writing and coordinating a few adapted sports programs in my area, I'll also be starting two new jobs as a group therapist and a college professor. I'll teach my first course in Abnormal Psychology next week. I'm over-the-top excited at the opportunity to introduce mental illness to a room of 25 students (who are exceptionally thirsty for knowledge I'm sure!) in a way that's dignified and non-stigmatizing.

I attended my adjunct professor orientation last night, met some other instructors, and learned about the school's policies. Everyone I met was friendly and sincerely welcoming. It only made me more excited to work there. Just before leaving a packed conference room, a math professor tapped on my shoulder. I turned and he said, "Oh I wanted to ask, What's your disability?" He waited anxiously with a few other professors poised nearby obviously listening.

I paused for a second as I reeled through the probably hundreds of answers I've given over the years. Should I go with the always vague (a bone condition) or the more technical (it's a genetic mutation that causes a collagen disorder)? I've also told people that I have a form of dwarfism-which is entirely true. Most people, however, believe all little people walk (think TLC reality shows) so that doesn't usually extinguish their curiosity. In the end, I decided to tell this man the exact name of my diagnosis (Osteogenesis Imperfecta). I knew-and was correct-that he would have no idea what that meant. More so, he probably wouldn't even remember what I'd said to Google it at home. My answer initiated the response I expected-a confused nod, a smile, and he said, "Oh-I've never heard of that."

He also said, "I always ask."

And that left me with a question. REALLY!?

I wouldn't call my feelings about this angry, but I'm honestly baffled. I *think* people's intentions are to demonstrate that they are comfortable with my disability, but I'm utterly confused by the fact that a complete stranger would think it acceptable to ask such personal questions.

Do people who ask me the name of my disability also ask complete strangers:

Are you divorced?

How was your last pregnancy?

What's your sexual orientation?

What's your religion?

What race are your parents?

What's in your purse?

Of course not!

[Graphic caption: The figure of a person standing next to a large question mark.]

I understand that people usually mean no harm when they ask me what's the cause/name of my disability. They are as I've stated before "well-meanies". It's still a boundary that is not appropriate for strangers to cross. I have questioned myself as to why my reaction is defensive. I am not ashamed of my disability, but I have rather recently in my life accepted the reality that it's often misunderstood and can carry a great deal of stigma-especially associated with working (i.e. If she breaks easily, will she miss alot of work? Can she really travel from site to site? What if she breaks while on the job?). Every disability carries some type of stigma. Mine carries a good bit of fear that sometimes leads to avoidance. My only request of the general public is to get to know a person before asking such a personal question. No matter how accepting one person may be of disability, stigma exists. If you're truly a supportive advocate, never expose people to a situation that could lead to discrimination.

How do you deal with this question?

More on Disaboom:

Attack of the well-meanies by me

Employment FAQ's by Kim Donahue

A discussion on Disclosing Disability in a Cover Letter

Grocery shopping our way

Kara — Mon, 10 Aug 2009 20:39:00 GMT

While not the most exciting task, grocery shopping is a necessity for most people. Surprisingly, it's seemingly simply errands like this that sometimes keep people with disabilities from living independently. I've found a few solutions that have worked for me so I thought I'd share them here.

This topic struck my mind because I've recently taken note of the insane difference in grocery shopping in Miami, FL (where I previously lived) and now here in Northern Kentucky/Cincinnati. I'm also a newlywed who is (more often than not failing but) trying to learn to cook. The stores in Miami were much more crowded, aisles were narrower, and people were generally more in a hurry. They weren't patient, sighed loudly if I took too long, and it was more difficult for me to ask for help if I needed it. Here, I shop regularly at a Kroger Marketplace. The larger store gives me more room, people can pass me if they need to, and most importantly-they have quite the cart collection!

A smaller cart is my key to shopping independence. Technically, these carts are generally used by children. I've noticed though that many elderly people prefer them too. They offer a large basket size that's lower to the ground and slightly shorter in length. My odds of running into one of those towers of beans is greatly lowered! The biggest challenge I face now is cabbaging one before my size-mates under 10 grab them first. Thankfully, my Kroger has never failed to have one on hand each time I visit-even during the busier times.

[Photo caption: A little girl (not me!) pushing a small grocery cart.]

Small carts are helpful, but they don't overcome the largest barrier to enjoying a successful grocery outing. It's hard to admit, but I hate asking strangers for help. I avoid it at all costs! At times, I'll even settle on a completely different size, flavor, or brand just because I can reach it myself. Other times, I can be a little more reasonable in recognizing that it just takes a moment and the vast majority of people don't mind at all to provide a little help. According to some marketing studies though, maybe I should stick to what I can reach! Grocery stores keep most of their lowest-priced items on the lower shelves because most people don't even look there. Able-bodied people avoid stooping to reach lower items while we grab us the deals with ease!

I love coupon clipping, but that's just another step that makes grocery shopping feel like such a massive time commitment. I've heard of friends with disabilities that use grocery delivery services, but they've always been too expensive or not available in our area. I've finally found one that might work. Alice.com doesn't offer many foods, but they do have a large assortment of household items. It's things like toilet paper and paper towels that make it trickier for me to carry my own groceries. Even better-you can apply coupons (even double coupons!) to your order through Alice.com. The site automatically searches for any coupons that are available on all the brands you prefer. I got a few items at really low prices. Shipping is free and I should get my order in only a couple days! Ordering was a breeze, but I'll update this post with my full review as soon as my items arrive. If you'd like to give it a try, sign up here for a discount.

[Graphic caption: The Alice logo is shown in brackets.]

What ways have you found to make errands like grocery shopping easier?

More on Disaboom:

Home Sweet Home: Equipment that Helps Elderly Live at Home Safely by Marlo Solloitto

Discussion about shopping on the net

10 Tips for Surviving Christmas shopping by Left Thumb Blogger

It's all in the name

Kara — Fri, 07 Aug 2009 04:37:00 GMT

Within the disability community, there's some divide on the value of labels. This subject is particularly familiar to the millions of parents who have special needs children returning to school in the coming weeks. Meetings with teachers and school administrators can seem like a discussion of a label instead of a collaboration to help a child achieve their potential. Some people hate labels. It minimizes everything else about a person except for the disability. Others feel relief that there's a name for their experience. It's hard for me to imagine what it would be like if I didn't know the name of my condition. There's a whole group of people who don't. Many have joined together to form SWAN, Syndromes without a Name.

[Picture caption: Blank labels are pictured with a black pen.]

My feelings on labels vary. I think labeling and categorizing people, not by value but by characteristics, is part of human nature. To me, it depends largely on which labels someone applies to me. I'm not only "that girl in a wheelchair" but I recognize that my wheelchair is probably the most memorable aspect of me. When appropriate labels are applied, like little person instead of the m-word, I take pride in that part of my identity. I also don't necessarily mind being labeled with my specific disability. Still, people should use people-first language, common sense-and basic grammar. I'm not "an OI". I'm a person with OI. Some people with disabilities believe that the only label used to describe us should be our names. I don't think that's realistic. Nor does it help us meet our needs. Someone saying, "That's Kara." isn't going to tell people anything about me-except that my parents chose a great name:-)

Over the years-or maybe always-certain labels seem to be magnetizing to stigma. The word "retarded" has taken a turn for the worst in the last decade. I used to advocate that we fight stigmatizing language, but maintain claim on words that are simply descriptors of certain conditions. I feel like in certain cases, like with the word "retarded", the battle is lost and other words (like "a person with a cognitive disability") would be better descriptors anyway. I was further convinced by an article by Steve Hoad. He did a Google search using the word "retarded" and 7 out of the 10 results were derogatory.

I tried a few other searches of commonly used labels and couldn't find any used negatively so often. Some researchers though have taken a much more scientific approach to studying whether specific labels make us think differently about certain people. A study in Japan looked at what people associated with the label "schizophrenia". The translation for this word generally means "Mind-Split Disease." The scientists replaced this label with another word that translated to mean "Integration Disorder." Then, they used an Implicit Association Test (IAT) to examine people's prejudgments about people who were assigned one of these two labels. The IAT is a psychological test that looks at a person's subconscious prejudicial thoughts. You can take an online demo yourself here. Japanese scientists found that people were more accepting of a person with the newer label (Integration Disorder). Researchers and advocates were especially hopeful about how changing a label could reduce stigma in younger generations. One has to wonder though...Would it just be a matter of time until that word, too, became stigmatizing?

More on Disaboom:

A great discussion on social stigma in the forums

Sticks and Stones: Language that Disables by Woody Lassitor

Shriver on Tropic Thunder by CherylBeryl

On Hate

Kara — Wed, 05 Aug 2009 21:48:00 GMT

Hate is such a powerful word. Growing up in my household, it was grouped with "shut up" as one of a few forbidden phrases we weren't allowed to use. Even today-I try not to use it and honestly, I try even harder not to think or talk about it. I guess you could say that I hate hate. No matter how hard we try to avoid it though, HATE is a reality in the lives of people with disabilities.

[Graphic caption: Black background with the word "HATE" written in white repeatedly.]

Sometimes it's hidden, implicit, and underlying. Other times, especially when people can use the shield of the Internet, it's right in our face. I received one of these hateful comments last night. Robin Umana replied to my blog about Tom Mundy, the man who sues businesses who don't comply with ADA regulations with this statement:

"You know why everybody doesn't pay attention to cripples, or multi-abled, or whatever you liken yourselves to? Because you all complain too damn much and expect us to cater to your each and every whim. You are not the only human beings on Earth, and if anything you are usually more of an economic burden than asset. yes those comments about him being fat are rather irrelevant but he can take a hint and start cooking for himself for once... wait no, he can't do that, because there's no profit in being disadvantaged by one's own "short"comings. Pun very much intended."

The elements of hate here are fairly obvious. There's name-calling. The common confusion of self-advocacy for complaining. The "fat" comments illustrate a bias based on appearance and then there's what I serves as the foundation for most hatefulness: ignorance. Apparently the author attempted some sort of pun, but the humor's lost in the fact that of course Tom Mundy CAN cook for himself. It's silly to assume otherwise.

I suspect I was graced by Robin's visit based on a comment I posted yesterday on this blog. There was plenty of hate and ignorance there. Statements like, "If he's really handicapped, he probably can't work." and this one, "No monies should EVER be payable to the handicapped. The State should collect the money." Most purely hateful commentary was too graphic to include. The threats of violence and harsh insults are still on the Sodahead site if you're interested. The conspiracy theory (that Mundy isn't really disabled) is quite popular too. That one is so ridiculous. My experience with people with disabilities lets me know within a split second that he actually uses the chair pictured.

Hateful statements on the Internet are disturbing, but they are nothing compared to acts of physical violence towards people with disabilities. According to the FBI, there were 57 incidents of strictly disability (not another type of bias, like race or ethnicity) hate crimes documented in the United States during 2004. Most people who study disability think these hate crimes are underreported because people tend to view acts of violence against us as ABUSE, which is treated with counseling, instead of CRIMES, which is treated with imprisonment. Whatever the number-the victims of hate crimes matter. Please take a moment to read their stories:

An athlete with a disability from Britain received letters in her mailbox that said, "People like you should be put down at birth." Her windows were broken and the perpetrator(s) put dog feces on her porch.
A high school senior from Ohio, targeted because she has a mental disability, was tied up, robbed, and beaten as perpetrators destroyed her prom dress and cut off her hair.
A woman from Britain with learning and physical disabilities who died in the street as her perpetrators mocked her, covered her in shaving cream, and urinated on her body-all while filming it on their cell phone.

These stories are hard to read.It's somewhat comforting to hear that just two weeks ago the US government added disability as a group protected by hate crime laws. This doesn't heal the victims who have already experienced hate crimes but maybe it will clarify that people with disabilities deserve a hate-free existence too.

In closing, I return to my probably common tendency to try and avoid unpleasant topics like these. It's so much easier to ignore hate. Sometimes that is the best treatment of it. I wavered about giving such attention to my hateful commenter above. But I think people need examples of what levels of ignorance and hate still exists. Also, the comment remains in place because she managed to express her ignorance without obscene language.

My motivation to STOP and THINK about the hate that exists today is fueled by two things: 1. In honor of the victims. Their lives should never be ignored. 2. Because as I think about the possibility of having a child with a disability, I need to be aware of all sides of the world that I'll need to prepare them to conquer.

Here's more on Disaboom:

A forum conversation on hate crimes against people with disabilities

My original blog on Tom Mundy, the man who's filed several ADA lawsuits

A blog post by "A Day in Washington" that includes a podcast about hate crimes and people with disabilities

What's your bedtime?

Kara — Tue, 04 Aug 2009 21:34:00 GMT

It's not always the big barriers that block people with disabilities from experiencing full inclusion in society. Even when we ramp the curbs, educate people, and provide accommodations, there are still little things that seem to keep us out. A British band called Heavy Load has recognized one of these seemingly little things that seriously impairs one's ability to have fun with friends. Heavy Load is a mixed-ability band. A few of their members have disabilities and a few don't.

[Graphic caption: Photo of each of Heavy Load's 5 members.]

Heavy Load started noticing a trend in the crowds who attend their popular performances. Not surprisingly, their pro-disability songs draw a diverse crowd-many of which have disabilities and rely on home healthcare services to help with daily living tasks. The members of Heavy Load noticed that their crowds seemed to disperse just before 10pm on a regular basis. Their fans explained that they wanted to rock out the night, but the shifts of home healthcare workers in Britain traditionally end at 10pm. Whether they are night owls or not, people with disabilities have no choice but to comply with this schedule. They leave events early, turn down late-night social engagements, and sometimes go to bed long before they are sleepy.

Heavy Load decided to address the challenge faced by their fans by launching a campaign called Stay Up Late. The campaign encourages people with disabilities and their home healthcare workers to have open discussions about the possibilities of sometimes straying from the rigidity of a schedule. For most, it's worked! The group recently rocked until 1am with the support of a crowd full of fans. The flexibility of their fans' support workers was not overlooked. Heavy Load sees the success of their campaign as a collaborative effort.

[Graphic Caption: The Stay Up Late logo is shown.]

The Stay Up Late campaign has me thinking...What would I have missed in the last few years if I would have been in bed by 10pm? Here's a snapshot:

Some of (what I feel are) my greatest writing pieces are born in the quiet of the night.
My now husband proposed shortly after 10pm after a day/night of fun that he had planned for us.
I prefer later flights so airports are less crowded.
My favorite Christmas tradition is midnight mass.

Then there are all the other supposedly little things...the spontaneous late-night dinner/drinks that you might catch with a friend, meeting a neighbor while you're checking mail after dark, or even the ability to finish an online conversation without an interruption demanded by schedule.

Do I think that home healthcare workers who help their clients with disabilities into bed by 10pm are mean and evil? No. I understand that they need a schedule too. Home healthcare workers have families and lives of their own to enjoy. But I do think that the Heavy Load band has made a heavy point. Full inclusion into society requires communication, flexibility, and collaboration. It's not just the big barriers...but also the little things.

What time is your bedtime? Is it dictated by someone else?

More on Disaboom:

Jazz singer with a disability by Catherine Mabe

Why concerts help me forget about my disability by Tiffiny

Home healthcare workers: Questions you should ask by Pat Mora

Blind women help detect breast cancer

Kara — Fri, 31 Jul 2009 05:25:00 GMT

Capturing my message from yesterday's post in a much more concise manner, a German doctor said it best, "We are turning disability into a gift." As reported on CNN, Hoffman has found a way for women who are blind to help detect breast cancer. Sound far out? Here's how it works:

A center for women in Germany who are visually impaired has begun training 10 women as "Medical Tactile Examiners" or MTE's. These women use their keen sense of touch to examine breast tissue for tumor development. In a recent study, the MTE's found smaller lumps that sighted doctors missed 450 times! Doctors only have a few minutes per patient, but MTE's often spend up to a half hour thoroughly examining their patients. If a tumor is identified, the exact location is pin pointed by the MTE's.

Besides being an impressive advocate that people with disabilities can make enormously positive contributions to society, Dr. Hoffman has also recognized that sometimes the smallest of accommodations can drastically improve a person's ability to do his or her job well. Because the women cannot see where they are examining, Dr. Hoffman created Braile adhesive strips to mark the boundaries of where patients should be examined.

[Photo caption: Close-up photograph of two hands examining a woman's breast. Two red and white Braille strips are in place to outline the boundaries of the examination.]

This supremely creative assessment method assures me that there are medical professional who are still willing to take risks and think outside the box. I can see its value, especially in poverty-stricken areas that may not have access to mammography and ultrasound technology. There are also cultural factors to consider. One has to wonder whether it would be somewhat more comfortable to experience such an examination with the knowledge that the examiner couldn't see you (in all your glory). There's also the fact that the "Discovering Hands" program only accepts women. As a woman, I can understand that. It wouldn't fly in the United States though!

I like this story because its touched on a positive aspect of disability without drowning me in words like 'overcome' and 'inspiration'. I combed the article and both are pleasantly absent. These women provide a valued service to society and enjoy a rewarding career because of their disability-not in spite of it. It is comforting that someone out there recognizes that disability can be a gift. If I had one suggestion (which when do I not?), I'd propose that no one needs to turn disability into a gift. In many ways, it already is one. Many thanks to Anderson Cooper to dedicating a bit of his broadcast tonight to answering the question I posed at the end of yesterday's blog. That was mighty kind of him!

For more like this:

Yesterday's post-Equal? Maybe. Better? Never

Boobs on Wheels: Breast Cancer Awareness for Women with Disabilities by The Left Thumb Blogger

John Milton: The Blind Man Who Saw So Much by Catherine Mabe

Equal? Maybe. Better? Never!

Kara — Wed, 29 Jul 2009 20:23:00 GMT

Whether you truly believe it or just feel like it's the politically correct thing to say, most people would endorse the following statement: People with disabilities are equal to their able-bodied peers.

Where I think our society fails all of us in the next leap of logic with the idea that because all people deserve equal opportunities, they are and should be treated the same. We all have different needs, strengths, weaknesses, and potential contributions to better our world. Treating any two people exactly the same is often an injustice to both. It denies the usually very obvious differences that make us who we are. We're all well-versed on the differences that might present adversity in our lives, but there are also those differences that serve as an asset. Some of these differences might give someone an advantage on a particular task. A difference might make someone well-suited for a particular role in our society.

A teenager who is very tall and athletic would have an advantage to shorter peers when they played basketball.

If I'm going to race a friend who walks (a.k.a. "a walker") on a sandy beach, I'd give the advantage to a walker any day!

Someone without my disability would be better at firefighting than me..

[Graphic caption: The sign for 'equal' is crossed out to signify 'not equal'.]

These examples aren't to say that people with disabilities can't perform well-even excel-in these activities. They just serve as seemingly basic examples that most are comfortable agreeing: There are a few tasks that people without disabilities are generally BETTER at mastering than those of us with disabilities. If we're ok with this reality though, why can't we also see that there are things that people with disabilities are BETTER at doing than able-bodied people?

A couple examples indicating the discomfort many feel with this idea:

My friend has worked this summer in an inclusive camp for kids with and without disabilities. He's uses a wheelchair and was conversing with a teenage camper who has also recently started using a wheelchair to maximize his independence. In making conversation and perhaps in an attempt to boost the camper's self-esteem, my friend remarked, "Guys in wheelchairs get all the girls." Another counselor nearby flew into a frenzy and pulled my friend aside. She said that my friend's remark suggested that people in wheelchairs were someone better. She didn't think that was fair to the other campers who walked.

Really!? As if now the able-bodied campers will have a massive identity crisis worrying that reverse oppression and discrimination will now take over the world! The statement was a simple one that recognized the developmental age of the teen (as one who is interested in girls) and reinforced his recent difficult transition. The other counselor couldn't see the potential benefits of this interaction because she disagreed that people with disabilities could ever be BETTER at something than their typical peers.

A more recent example can be found in the controversy surrounding the appointment of Sonia Sotomayor as the next Supreme Court Justice. I'm appalled by the suggestion that Judge Sotomayor couldn't fulfill her duties due to her Type I diabetes. Not that it's anyone's business, but Sotomayor has been effectively and successfully managing her diabetes for decades. Until we also review the risk-taking behaviors, lifetime drug use, and extensive medical/genetic histories of other justices, why is it fair to consider a diagnosis that Sotomayor has readily discussed?

[Photo caption: Judge Sotomayor smiles next to a window with a city view.]

A comment made more than seven years ago has also plagued Sotomayor during her hearings. In October of 2001 Sonia Sotomayor said, "I would hope that a wise Latina woman, with the richness of her experiences, would more often than not reach a better conclusion than a white male who hasn't lived that life." To me, this seems obvious! To others, it's reverse discrimination. Sotomayor didn't state that a Latina woman should be given priority over or BETTER TREATMENT than white males, she simply acknowledged an advantage that her unique life experiences provides. Can you really argue that? Experiencing the healthcare system as a patient for years has to result in a different level of understanding than someone who peruses reports. Someone who has LIVED through an act of discrimination rather than heard/read about it can provide a needed perspective in our country's highest court.

Why are we so afraid to admit that in certain instances, we are can perform BETTER than people without disabilities? It doesn't mean that we don't all deserve EQUAL OPPORTUNITIES. It's simply an acknowledgement of reality.

I know you all have examples of unique ways your disability has given you an advantage. Mine range from the silly (I can fit in extremely small spaces) to the life-changing (my disability has led to an immediate foundation on which to build rapport when I've counseled children with disabilities).

What's something you can do BETTER than someone without your disability?

For more on this topic, check out these posts on Disaboom:

One of Us on the Court by Abe Munder

When dating another person with a disability is desirable (aka BETTER) by Dr. Fulbright

Blind People Can See Better Than Me by openmindinsertfoot

Was Michael Jackson's memorial accessible to all?

Kara — Tue, 07 Jul 2009 21:06:00 GMT

According to his devoted family, friends, and fans, Michael Jackson represented many things to many people. Among them, some of my favorite words/values: INCLUSION AND DIVERSITY.

With that in mind, how inclusive was the memorial planned to honor the memory of Michael Jackson?

According to a fellow advocate and my Deaf friend, Michael Agyin-not very.

Like millions of others who celebrated the memorial through social networking sites, Michael posted this Facebook status:

"Mad there there no captions to watch the MJ memorial online."

He wasn't the only one frustrated.

People on twitter were also upset to be denied access to the experience. Several people have tweeted, "Complain to CNN about no captioning of the MJ memorial."

[Graphic description: Photo of Michael Jackson wearing a hat and dancing with the words 'Michael Jackson: The Farewell.]

What do you think? Should networks and Internet video broadcasters be required to make events like this accessible to all? What would inclusion mean?

Closed captioning?

Signing?

Descriptions of visual activity during the memorial?

A few weeks ago, Congress took up these questions. On June 26, Representative Ed Markey from Massachusetts introduced the 21st Century Communications and Video Accessibility Act. If already in place, this Act would have mandated Internet providers to make captioning available online. You can read the bill in its entirety and track its progress through Congress here.

The bill is a long overdue bridge to inclusion, but it will probably leave some questions unanswered. Should laws like this be imposed on an otherwise private memorial? I believe-YES. First, this event was not private. It was opened to the public and therefore, should have been made virtually accessible to all. Second, the cable companies, like CNN, Fox, and ABC, have access to the technology and workforce necessary to make broadcasts accessible. Failure to include millions is the same as choosing to exclude them. Some have decided to contact CNN to voice their complaint. You can do that here: http://www.cnn.com/feedback/. There's also a live feed that is a collaboration between CNN and Facebook focused on the event. Here, you can inform others about this oversight that left out so many.

My thoughts on this topic began and will end with Michael Agyin's unique perspective. He ended his frustrated statement above with a call to action that we should all hear, "There is nothing that can't be done if we raise our voice as one!"

And here's more:

An example of excellent access provided by the Deaf Freedom Cruise

Why do Deaf people need lyrics anyways?

How is Disney making strides in access for Deaf visitors?