Achilles International: Where Everyone Can Run

by Amy Saffell


As we enter into a time when people are making resolutions for 2013, many of them health related, I wanted to share my experiences with an international running group for people with disabilities, Achilles International.  It has become one of my favorite weekly activities, and it’s challenged both my body and my mind. I hope that you, too, will get involved in the new year.

Growing up in Atlanta around a lot of other people in chairs, I was involved in a variety of organized sports from an early age. Being born with spina bifida, I have good arm strength, so a lot of options were available to me. When I went to college in Greenville, South Carolina, I knew that there would be far less people in chairs around, but I wanted the challenge of creating my own opportunities when it came to needs relating to my disability, including fitness. Just because my team sports days might have been behind me, or at least on hold, didn't mean that I wanted to let my fitness level fall by the wayside. It was at that point that I turned to running and never looked back.

The Best Four Wheels for Working Women on Two Wheels


For women on wheels whose work or business requires pick-up or delivery of merchandise or people (kids included!), wheelchair accessible minivans may be the best four wheels from which to choose! If a standard car “works” for you, you’re good to go. But if you want a vehicle ideal for businesswomen, soccer moms, and virtually any woman with disabilities who’s steering her own life, head straight for a wheelchair accessible minivan! Consider these six compelling reasons:

Blindside to the Flip Side

by Jenny Addis

No one believes tragedy can hit home. We have this mindset that it happens to other people, not to ourselves, our loved ones, or someone we know. I was living a life that seemed perfect and what most people would call “normal.” Growing up in in a small town, Muskego, Wisconsin, with my supportive parents and four brothers, provided me with a stable family life. In turn, it molded me into an outgoing, positive, and confident young woman living life with dreams and aspirations—until that unimaginable tragedy struck me and my family’s lives. My positivity, confidence, and faith would soon be put to the test.

What was about to happen next blindsided me, my family, friends, and our entire community. We learned quickly just how fragile we really are and how life can change in just a blink of an eye, without any notice.

The night of March 16, 1997, my designated driver made a critical decision that profoundly changed my life forever. After giving a bachelorette party for my future sister-in-law, I was one of four passengers in a horrific drunk driving accident. My world as I knew it changed forever.

My Birthday Lifetime of Thankfulness Revelation


by Amy Saffell


This summer, I had a big birthday…the kind that ends in a 0. For me, this milestone was a threshold that a lot of my friends had already crossed, so even though it was strange that it was actually me this time, I embraced the dawn of a new decade. 

As is true for a lot of people, events such as these make me examine where I’ve been and where I’m going.  As I thought about it, I saw that where I’d been had been a lot of places, both physically and metaphorically, and that my life has been enriched by a plethora of factors, regardless of whether or not I realized it at the time. Perhaps surprisingly, many of these life-enriching experiences I attribute to my disability. People have a tendency to focus on what a disability takes away from a person’s life and don’t see the value that having a disability can hold. Being born with spina bifida, I've had a lifetime of learning to cherish the unique opportunities that my disability has brought to me. Now that it's the time of year where people think about what they’re thankful for, I can truly say that I am thankful for the experiences that my disability has afforded me.

Finding the Miracle in the Mundane


by Jenny Feldman

“So this is what you meant
When you said that you were spent
And now it's time to build from the bottom of the pit
Right to the top
Don't hold back
Packing my bags and giving the academy a rain check...”

- "It's Time" by Imagine Dragons


This could have been the end of my story - but it’s not.  As I sit here and write this, listening to a little Imagine Dragons, I am surrounded by mundane normalcy.  Piles of clothes sorted into darks, lights, and whites adorn my laundry room.  I have carpools to drive, dinners to plan, and schedules to arrange.  Bath time, homework, date nights, girls' nights, and emails to answer wait for me, as well.  I have two amazing little girls, a fabulous family, and great friends, after all - and a wonderful husband who sometimes needs help with all these things, too (although buddy won’t usually admit it… ;) ).       


Our  little family at a recent wedding
But every September takes me back.  September always sucks.
I hold it in. I count the days.  I try so hard to JUST. GET. THROUGH.
“What happened???!!!” 
 “Will she ever walk again???”  
“…Paralysis…”
"…Paraplegic..."
 “…Likely permanent…” 
“One day, there will be ‘bionics’…”
”Do you believe in miracles? I do.”

That last quote is comprised of words that were spoken by Dr. Ben Carson, during a conversation in my hospital room as he spoke with my family and me about what had transpired on September 28th, 1989. He is the Director of Pediatric Neurosurgery at a world-reknowned hospital in Baltimore, a position he has held since 1984 (at the age of 33).  He is the youngest doctor to be appointed to such a position in the history of the hospital.



Karen Roy Lets the Good Times Roll

Editor’s Note: You’re not beaten until you give-up. Although you may not know where you’re going or what you’ll eventually become, as long as you continue to improve and try to be better than you’ve been yesterday, good things start happening for you. Karen Roy from Baton Rouge, Louisiana, has proved that statement. A medical social worker today at Neuro Medical Center/Rehabilitation Hospital, Karen Roy has taken a journey to arrive at this position that demonstrates the courage of an individual and the never-say-die attitude that results in a successful life.

Karen Roy with her beautiful family in New Orleans.
Karen Roy with her beautiful family in New Orleans.
My childhood was spent in Marshalltown, Iowa, but most of my life was spent in Louisiana. My mom, dad, little brother and I had a picture-perfect family. My dad had an engineering background and sold large valves to chemical companies and oil companies. In Louisiana, the chemical and oil business was and still is a major part of the economy, and supplying this industry with equipment was very lucrative. My dad worked for Fisher Controls, which he said was the Mercedes of the valve industry, and became vice president of this company. I went to a very small private school in Baton Rouge, and, although there were only 68 students in my class, I had a lot of friends because I was a social butterfly. I fell madly in love at 16 and dated that same boy for 7 years. He was with me when I got shot. 

Diva for Hire



by Bethany A. Hoppe

There are 48.9 million Americans with disabilities - that is 1 in 5 people has a disability.  Of those...1 million are wheelchair users.  For every 250 people, there is a wheelie person.  October is Disability Awareness Month, with an emphasis on Employment. Jobs.  Job-jobs.

Have you ever noticed that one of the first things humans tend to ask one another upon initially meeting, is "So....what do you do?"  

In real conversation, that is a total downer.  But it is animal habit, just the same, to try and find something in common with our conversation partner during happy hour beyond the obvious weather.  Sometimes, this code of conduct gets skipped over in my personal encounters, and heads right to the "So....what's wrong with you?"

I wish-wish-wish I could toss out on the card table snarky answers to some of the inquiries:

"Were you born that way?"
"Hell, no!  I was hatched."

"What happened when you were born?"
"The stork crash-landed...it was like...bad."

Don't Break my Legs...Handle with Care!


by Jenny Addis



In the beginning of the year, I had the opportunity to fly out to Faulkton, South Dakota for business. Along the way, I ran into a major obstacle: the airline damaged my power wheelchair. Due to this unfortunate event, I discovered some disturbing information that I’m sharing with our mobileWOMEN readers in my "Don't Break my Legs...Handle with Care!" campaign.

I travel frequently and yet, each time I take to the skies, I realize there is a possibility that something may happen to my wheelchair. Nonetheless, I cannot allow that fear to prevent me from flying. In 1997, at the age of 24, a tragic drunk driving accident left me paralyzed from the chest down, stripping away my independence, livelihood, and career. It took time, but eventually I became focused on taking my unfortunate experience and turning it into something positive by beginning a new career. At this point, traveling became a necessity in my life, career and overall independence. Now when I get on an airplane, I only hope that my wheelchair arrives back on the jetway in one piece, wherever my destination is that day.

On this occasion, we landed back in Minneapolis and, as I was waiting on the airplane for the personnel to bring my wheelchair up from stowage, I realized that it was taking quite a long time. Long waits in the past were never a good sign.

Tatyana McFadden: Pushing Expectations


by Amy Saffell    

One wouldnt expect that a girl born in Eastern Europe with a disability, denied proper medical treatment after birth, abandoned by her family, and sent to an orphanage so poor that they couldnt afford a wheelchair for her to get around in would become a 3-time Paralympian.  After all, society doesnt even tend to expect much from a child with a disability born in Middle America to loving parents.  Fortunately, Tatyana McFadden was born expecting from within nothing less than to thrive. 

Challenging Early Expectations

Tatyana’s story begins in St. Petersburg, Russia where she was born in 1989 with spina bifida.  That wouldnt be considered a life-threatening disability in the United States, but it was a much different situation in St. Petersburg.  In Russia, and in many parts of the world, people with disabilities even today arent respected as other citizens are, much less in 1989, often not living among the rest of society and not having access to proper medical care, resulting in a poor quality of life and a shortened lifespan.  In the case of those with spina bifida, sufficient medical care is vital because babies are typically born with an open spinal column that needs surgical closing right after birth.  Tatyana, however, had to wait three weeks before that surgery was performed, which would typically lead to further nerve damage and life-threatening infection.  By all accounts, Tatyana shouldnt have survived those early months, but even in infancy, her will to live was stronger than the unfortunate circumstances around her. 
Tatyana visited Russia in 2011 to share her success
with the orphanage in which she was raised

mobileROMANCE: In Love but Worried


Dear Tiffiny,

I have been in a relationship with my boyfriend for about five months now.  We met online and, in the beginning, he seemed to be alright with my wheelchair situation, but now I am not so sure.  Things are going pretty well...  I've met his parents, friends, except I'm starting to worry that my limitations may be getting on his nerves. 

He's really sweet, and that's part of the problem. I'm afraid he wouldn't tell me to what he was really feeling even if I asked him.  What can I do to make sure he's not starting to get annoyed with my disability (I would hate for it to get the point that he gets so fed up that he just walks away)?  Thanks for taking the time to help me.

Sincerely,
In love but worried
----------------------------------------------------------------------------------------------
Dear In Love But Worried,

What you're feeling is one of the most common things someone with a disability feels when they're dating a partner who's able-bodied - are we good enough and will our limitations eventually drive them away.  To be completely honest, they could, and this has happened to many relationships, but that's life, it gets messy and sometimes hearts get broken.

When Self-Confidence and Success Allude You

by Amy Saffell

Self-confidence is a funny thing. A lot of times, it doesn’t start within ourselves at all. We gain so much from paying attention to the world around us and putting ourselves in position to learn from others. It is at this point when our abilities and self-perception drastically improve!

I work with a wheelchair sports and independence program here in Nashville. Kids in chairs participate in a variety of activities through the program in order to learn how to become more independent and, in the process, they get the opportunity to play sports that they may never before tried. 

During a wheelchair basketball tournament this season, I was talking with one of the moms whose 12-year-old daughter is turning into quite an athlete. She’s only been on our team for a few years, but it’s clear that she has a future in the sport. Although I haven’t witnessed it, I’d heard that her independence skills outside of sports weren’t what they should be for someone so capable on a basketball court. Her mom told me that, for years, her daughter always said she didn’t think that she could ever move away from home. She lacked confidence in her abilities. Her parents tried to convince her otherwise, but it never sunk in; that is, until she started playing basketball.  

mobileROMANCE: Advice for a Lonely Lesbian


Tiffiny Carlson



Hello Tiff-

I’m a 34 year old woman with cerebral palsy and I use a power chair. My first and only relationship was in high school. Dating with a disability is hard enough, but throw in the fact that I am a lesbian and it gets so much harder. The stereotype is that people with disabilities are not sexual beings, but then you throw in a deviant sexuality...

I am not in to the bar or club scene, but I am wishing I had someone in my life.

Thanks,
Lonely Lesbian
----------------------------------------------------
Dear Lonely Lesbian,

Sorry to hear you’ve been single for so long. I hate hearing stories of people who’ve been single since high school. And putting a stop to the single streak, like you already recognized, when you’re both disabled and gay, isn’t the easiest hand to play, but it can still be played with success.

Ms. Wheelchair Massachusetts, Patti Panzarino: Creatively Persevering through Life


Amy Saffell

by Amy Saffell

Greatness lies within us all, however sometimes we don’t recognize our potential without someone else’s help. This is the case with the newly-crowned Ms. Wheelchair Massachusetts, Patti Panzarino. What started out as an ordinary trip to get her wheelchair serviced turned into much more. A woman who worked at the shop mentioned the pageant to Patti, mentioning that she happened to be on the board of directors and thought that she would be a great contestant. Patti had never thought of herself as the “pageant type.” Particularly at the age of 53, she had her reservations about a pageant, but after learning that the contest focused on advocacy and accomplishment, she began to consider the idea a little more. With the encouragement of this woman and her husband, who she married in August of 2011, Patti was eventually convinced to compete.   
Patti Panzarino

Although she was originally reluctant to participate, as Patti began to prepare and the days got closer, she became increasingly motivated and excited. Becoming a part of this pageant meant something to Patti, and she wanted to put her nerves aside. She was worried that her accomplishments thus far weren’t on par with the other contestants, nonetheless Patti stuck with the process.

Let's Rock & Roll!


by Bethany A. Hoppe


News Flash:  We have skipped Spring. None of us are swimsuit ready! I have bought Zumba for my Wii and a DVD of Intro to Yoga for Toning and Shaping.

Clearly I've been thinking about body image. What we think about our bodies, what we think about other people's bodies, and what maybe-kinda-perhaps other people are thinking of our bodies can be overwhelming.  

That's an awful lot of people thinking an awful lot about bodies.  

I don't know about you, but when I think about my body I find sometimes we're friends. Sometimes we're enemies. And sometimes we're frenemies.  It depends on the day, the occasion, the weather, the moon phase, the tide, the year, the age, the color of the sky, the traffic, the atmosphere, the mood, pre-or-post coffee, the season, and most particularly what major event is coming up.  

To name a few factors.  

Women have more body issues than men.  Men, however, are catching up with women when it comes to dealing with body issues.  The more media displays the ideal male - aggressive, muscular, traditional-typed masculine traits - the more men are beginning to believe that this is the way they should be in order to be desirable.  

mobileROMANCE: Always in the friend category


mobileROMANCE columnist
Tiffiny Carlson


Hi Tiffiny,

I’m a 29 year old guy in a wheelchair, very independent and somewhat successful. I’d say I’m a good looking guy and think I come across relatively confident and talking to girls has never been a problem. I realized early after my accident that life was going to be significantly different when it came to women and relationships (I know, not rocket science…haha). It was not going to be nearly as easy as it once was, but I’ve been pretty determined to not let my chair be my excuse.

After trying and failing to pick up girls in a similar way to how I once had, I decided that a better way to approach it might be to rather befriend them rather than actively perusing them. Only problem is I now have a bunch of girl “friends” and no girlfriend, and it’s beginning to feel not too dissimilar from the relationships girls have with their gay guy friends! If I try to make a move and the feelings aren’t mutual, the friendship will never be the same.

My question is, what--if anything--would you do differently?

Sincerely,
Mr. Always Platonic

Hello...World!


by Jenny Addis

Hey Jen!

Someone close to me has a very similar story to yours, but unlike you, she is giving up.  It's been only three years since the car accident that caused her paralysis. I have seen your inspiring website and posts on Facebook and it’s obvious you are living life to the fullest. My friend has a child and so much to live for; I just want to help! How long did it take you to decide to rejoin the world?
 ~ Anonymous MW Reader

Hey Anonymous MW Reader!

I'd like to say I have a straightforward answer to your question, but I don't. I'll explain...

First, the feelings your loved one is experiencing are only natural. When an individual goes through such a life-altering, traumatic experience, especially being blindsided by it, there is no knowing how that person will react. Everyone deals differently with pain, grief, and loss. Some people are headstrong and determined from the start, while others melt, breakdown and give up. Is there a right or a wrong way to deal with it? In my opinion, no! What matters is how we overcome the stumbling block and what path we then choose.

March is Women’s History Month! Let’s Get Rolling!


by Bethany A. Hoppe: Raspberry Vogue

March is National Women’s History month, which dates back to the first International Women’s Day in 1911. Much like “traditional history,” where women have been left out of the majority of our pivotal moments in history, women with disabilities have been left out of our collective oral and written histories, too.

Studying women with disabilities in relationship to the feminist movements has become a rather new adventure for me. I know that I was born at a critical time on many levels. In 1970, The Disability Rights Act, which began its movement in the mid-1960’s, was written into law.   

Also, on a personal note, the year I was born, surgeons at Buffalo Children’s Hospital, New York, took brave and drastic measures to set the course for my life, having been born premature with Spina Bifida. Family legend has it that the surgeons argued over my body on the table. Thankfully, the innovative, aggressive physician won, and in an unprecedented move, he surgically broke my back and reset it,  thereby eliminating a lifetime of pressure, pain, and the need for a shunt. 

I believe I was born in an excellent year.

MobileROMANCE: Looking to get her feet wet

mobileROMANCE columnist
Tiffiny Carlson

Dear Tiff,

I have type 2 Spinal Muscular Atrophy, but I also have a trach and a G-tube, so it's not just the wheelchair with me. I just graduated, just moved into my first apartment, and never had a boyfriend in high school (for my own personal reasons). But now that I'm on my own and going to college soon, I'm totally ready to enter the dating scene. So, as a young disabled women with zero dating experience, what kinds of advice would you give me in regards to basic dating rules, how I should carry myself, what to do with the sex subject...pretty much basic advice on how to become a "hot chick in a wheelchair" too, and not "Just that disabled girl."

Thanks so much!
A

Introducing Tiffiny Carlson, our mobileROMANCE Columnist!



mobileWOMEN is proud to announce the addition of Tiffiny Carlson to our columnist team! Tiffiny will be our mobileROMANCE columnist, answering your questions about love, dating, romance, and relationships for the mobileWOMAN.


Tiffiny Carlson, a C6 quadriplegic, has written extensively on relationships and disabilities. She has been published in Penthouse, Playgirl, Marie Claire and wrote a disability love column several years for Lovebyrd.com. She's dated extensively since her injury and although she's now settled down, she's excited to bring her wisdom to help people with disabilities who are struggling to find love. In addition, Tiffiny is the founder of the disability blog BeautyAbility.com and hosts the disability lifestyle podcast "No Free Rides." 


To submit your question to Tiffiny, email tiffiny@beautyability.com