Woman sitting in a wheelchair in an office building.

When I Realized a Wheelchair Doesn't Mean 'Giving Up'

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Yesterday I ordered a wheelchair.

This was a huge step for me, because my whole life I’ve been stubborn. I have been told I was unable to do something because of my disability so often that my personal motto became “Succeed Out of Spite!” just to prove them wrong. I felt I could do anything anyone else can, and I was determined to do it even if it was deemed unsafe for me.

Nine times out of 10, this works to my advantage and I succeed out of spite. The other time, though, it ends in complete disaster. It’s always the same — there’s a large group of people who don’t know me, there’s a lot of walking in an area I don’t know well, and I get left behind. And the scale of it is getting bigger and bigger. It’s no longer my elementary school class leaving me behind on a walk around the neighborhood, it’s a French Immersion group leaving me behind in a city I don’t know because they didn’t know what the words “spinal cord injury” meant. As my adventures get bigger, potential disasters get bigger too.

When the idea of me getting a wheelchair first surfaced, I felt I was giving in to my disability. I felt I was letting it win and I was no longer “succeeding out of spite.” So I was reluctantly looking at wheelchairs. I looked at cheaper ones that would serve the purpose but not much else. Then one day I walked into a store that specifies in wheelchairs, and in high tech, nice chairs. I was looking around, not too invested in the chairs and secretly hoping something would change so I wouldn’t need one, and then my dad made me sit in a light sporty wheelchair.

Between when I sat down in the chair and when I wheeled myself to the other end of the store (it was more like a small warehouse), my whole perception had changed. I had never gone that fast in my life. I suddenly saw a type of freedom that my legs don’t give me. I thought I might be able to limit the size of the disasters that tend to fall on me. I thought for once I’d be able to keep up with my friends and family without asking them to slow down.

I’m now excited for my chair. I’m starting to see a type of freedom I never had before. I’m still stubborn, and trust me I’ll still cause a disaster by refusing to admit my limits, but now I can do it a little faster than I did before. And I can keep my spoons!

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My Daughter's 'Summer of Serendipity' After a Spinal Cord Injury

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My daughter Beth was 17 years old at the end of her junior year of high school. Three
years had passed since her spinal cord injury (C6-7) in May of 2000. The direction of her life was about to change — again. She led and I followed.

First finals and first Paralympic American Record:

During therapy in the rehab pool, Beth had learned how to float. When she could barely swim the backstroke, she joined a team. To start the summer of 2003, Beth and I took turns driving from our small town in Ohio to Minneapolis for USA Swimming Disability Championships. She qualified for finals and earned her first S3 Paralympic American Record in the 200-meter backstroke. A year before, she had not been strong enough to swim nonstop for 200 meters.

First East Coast college visit:

On the open road again, heading east instead of west, we sang along with Beth’s CD mixes on the way to Baltimore to tour Johns Hopkins University. She had a short list of possible colleges with strong biology programs, all out of state. Before the accident, we had assumed she would go to college in Ohio.

First Junior National Disability Championships:

Beth had planned for the week-long event in Connecticut. Hundreds of kids gathered from across the country. At the table tennis competition, she won several games after experimenting with a better way to grip the paddle. On a free day, we ate lunch at Mystic Pizza, surrounded by memorabilia from the 1988 movie with the same name. Beth bought “A Slice of Heaven” T-shirt and rated it the best pizza, ever. Equally exciting, we found the fifth Harry Potter book, “The Order of the Phoenix,” to add to her collection. Her happiness was contagious.

We sat on a picturesque waterfront on a flawless sunny afternoon. An easy traveler, Beth tilted her face upwards, closed her eyes, and smiled. I hugged her and she softly patted my back, a habit from her toddler days. In a clear moment, I understood that I no longer needed to worry about her future.

The day of the swim competition, wheelchairs crowded the pool deck. During Beth’s races, I walked alongside her on the deck. I pretended to be a coach by waving my arms, the signal to kick harder, to make her laugh. She couldn’t move her legs.

Junior Nationals ended with a dance in a packed ballroom, a place where no one was different and no one was the same. Beth danced carefree in her wheelchair in the middle of it all.

First time in Cambridge, Massachusetts:

Before we drove home, my daughter requested a last-minute stop to a college not on her list of possibilities. “I toured the Harvard campus,” she said, “and just fell in love with it.”

First Youth Leadership Forum:

I dropped Beth off at the Ohio Youth Leadership Forum for five parent-free days with other students with a disability. I thought she would be reluctant to request help and be frustrated. I was right about asking for help, but wrong about her response. For Beth, the forum was empowering and a big step towards independence. She said it was the best week of her life! I smiled, glad to hear it but sure that many others would be even better.

First time flying first-class, first passport stamp, first international medals:

Beth was invited to a Canadian meet in August with the U.S. Paralympic National Team. She packed her brand-new passport. For our flight to Edmonton, Alberta, a clerk upgraded our tickets to first class, introducing us to warm hand towels and extra service on the eight-hour flight.

Competing with several S3 swimmers from other countries, Beth earned two silver and two bronze medals. After the meet, she was surprised to be named to the U.S. Paralympic National Swim Team — for the first time.

In a colorful summer scrapbook, Beth listed 15 notable firsts, including her first swim practice in the rain, her first concert without supervision, her first part-time job in an office, and her first tuna fish and cucumber sandwich. However, the very best was wheeling around Harvard, the college that would change Beth’s world. It was a summer of serendipity.

Read more at www.strugglingwithserendipity.com.

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Why We Must 'Be Fearless' as Disabled People Searching for Employment

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I grew up in the Blue Mountains in New South Wales, Australia, where there was one disabled accessible railway station a 25 minute drive up the highway and there weren’t any accessible buses. Or even regular buses. My parents trudged up and down the Mountains to look for a primary school suitable for me to go to, and at the time the only school willing to take me on as their first disabled student was Lawson Public.

My disability is called neonatal flaccid paraplegia. It came about due to a stroke I had while being born. Since I was 3 years old, my disability had me using braces and crutches to move around. It would often leave my legs bleeding and raw after a day at school. They used to tell my parents that there would be a day I would be walking with braces and only one crutch. I don’t think anyone in the late 80s really knew much about what to expect with a progressive disability. Now I’m in a wheelchair full time, and I look back on that and think how wrong they were.

A week after my 16th birthday I got my learner license to start driving. I was so excited. The day I got my first-tier provisional license and figured out the best way to put my wheelchair in the passenger side and drive myself to the shops was one of the most liberating feelings I’d experienced. I thought from then on I would be able to get work easily, and moving to a different house wouldn’t be a problem.

How naïve young Susan was with all of her positivity. The reality was harsh. People had either an over-expectation of me to achieve something great, or had underwhelming expectations. Even when I had nailed a phone interview, some employers would sit back stunned when I came in for a face-to-face interview. Some employers would make their receptionists cancel interviews and ask me to “wait for a call back to reschedule” as soon as I asked if there was disabled access to their workplace. Some employers hired me to meet a quota. I would search advertisements for places who specified “We are an equal opportunity employer” just because I felt safer to apply.

I’ve only had a handful of jobs, mostly in admin, but that wasn’t due to disinterest. When I turned 19, I decided I would go up and down the mountains handing in resumes. Some looked like they had genuine interest, and others took the resume from me out of politeness.

A year had passed and I felt defeated. I couldn’t physically do the most readily available jobs, like being a waitress or a bartender. At the end, I remember going into a workplace and handing in a resume and she looked a little awkwardly at me. In the end I said, “You won’t hire me, will you? Is it because I’m in a wheelchair?” She said yes. At least she was honest.

That’s when I knew I had to leave. A part of me always knew that if I wanted to get a job, I needed to move away from the mountains and into the city. It would be a lie if I were to say that I wasn’t left bitter and cynical. I began to believe my life was nothing more than accumulating a small government pension every fortnight because of the lack of job opportunities. For a very long time I worried about whether I’d ever be hired again. It took three years to find the job I have now, two of which I was actively looking.

There are a few things that really irk me like building access and the state of disabled parking, but the state of disability employment is unequivocally number one. I can only surmise that people are hesitant to hire someone with a disability because it is different to what they have encountered before. There are a lot of factors to consider when hiring someone with a disability, but it doesn’t mean the employer has to feel like they have to “take care” of us. We can look after ourselves if we have physical access and our (usually simple) needs for accommodation are met.

I believe countering this problem will take some very blunt governmental policy changes, starting with building access. We can’t be hired somewhere we can’t get into. It limits the already limited scope of opportunities. It will take employers who are confident in our abilities as skilled workers. It’ll mean that employers have to be confident we can climb a career ladder. It will need the support of the people who lead this country and those who are willing to stand up with us. It isn’t any good having one token person in a wheelchair at work and patting yourself on the back for a job well done because you’ve made the equality quota for the year. How long can you ignore 20% of the population, most of whom are able to work if given an equal opportunity?

We as disabled people also need to be fearless, because disability isn’t contained to one particular gender, ethnicity or religious background — it affects everyone. If not for ourselves, then we must be fearless for the next generations who need us to pave the way for them, and show that we are contributing members to society and we can make a difference.

Be fearless with us and for us.

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When I Worried About My Daughter's Future With a Spinal Cord Injury

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In May of 2000, my 14-year-old daughter looked forward to making the volleyball team at her
new school. Instead, Beth would begin her freshman year with a C6-7 spinal cord injury, the result of a car accident near our hometown in Ohio. I worried endlessly about school and her future.

“You don’t really have time to cope with things,” Beth said. “You just kind of get thrown back into the world.”

She cut her stay short at the rehab hospital to start her first year of high school on time. She refused the easier option: tutoring. No matter that she was pale, tired, weak, and susceptible to infection. No matter that she could only push herself a short distance in her new manual wheelchair before her arms trembled and exhaustion set in.

“Life is about making choices. At this point, some people may have taken a year off of school to rest and build their strength at home. I wanted to start at Tiffin Columbian High School with the rest of my freshman class.”

Three months after the accident, a rare intense storm ushered in the first morning of school with hard
driving rain. In the parking lot, I pulled Beth’s wheelchair from the trunk, zoomed to her open door, scooped her legs over the doorway, grabbed the side of her jeans, and lifted her to the wheelchair. My older daughter Maria held an umbrella over us until it broke. The soaked girls entered the building together.

“I began high school as a different person than I was in junior high.”

My well of worry overflowed that morning. At lunchtime, when I met a smiling Beth at school, I
could breathe easier. She looked completely drained and I wanted to take her home to rest. She declined.

“Kids stared a lot at first. They wanted to get my attention, to talk to me, to see how I had changed. I was already used to being stared at.”

Beth sat next to a friend in each class. At first, they photocopied their class notes and handled her bookbag. Muscle spasms made her legs bounce straight out, rigid. Her friends could safely bend her knee to “break” the spasm and put her foot back on the footrest, before she figured out how to do it herself.

“I had a small group of very close friends who helped me in many ways.” 

Beth received a gift, an elegant silver and gold ring with a small diamond, engraved with the word HOPE. Her best friends wore identical rings.

“I tired easily and fought infections and a bout of pneumonia that first year in high school, but through it I learned how to take care of myself.”

On weekdays, I picked Beth up before the last class period. On Tuesdays and Thursdays, she fell asleep at home by 2:30 pm. The other three weekdays I drove her to outpatient physical therapy directly from school.

“I realized that my biggest challenge would be to insist on doing things myself and to become independent again.”

On the stormy day when Beth started high school in a wheelchair, I wish I had known that she would achieve independence — as a student at Harvard College. I had worried needlessly about her future.

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How Being a Paralympic Athlete Changed My Daughter's Life

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“When I began water therapy,” said Beth, “no one expected me to ever move in the water without someone holding me up.”

My youngest child was paralyzed in a car accident near our hometown in Ohio. We became a team. In the rehab pool for physical therapy, Beth, 14 years old and a new quadriplegic, tried and failed to stay afloat. Weeks later, I watched her float on her own with her arms gently waving under the surface.

“I immediately loved the water and the freedom I had in it.”

Beth swimming.
Beth competing.

Two weeks before our first Wheelchair Games, Beth figured out how to accomplish a sloppy backstroke without sinking. A coach at the games encouraged us to attend a national swim meet to “see the possibilities.” We learned that competitors in my daughter’s S3 classification were rare. She asked to work with a coach, determined to swim the forward strokes.

“I started doing the backstroke. Learning to swim on my stomach and still breathe was a big challenge initially.”

Beth wasn’t a swimmer before her injury, and it took weeks of failing, again and again, before she managed to move forward on her stomach just a meter or two — not even attempting a specific stroke. Over months, she extended the distance. Then, she gradually learned all of the strokes, each modified to her abilities by an exceptional hometown coach, Peggy Ewald.

I basically swim with my upper body and pull my entire body with my arms. Since my hands can’t cup the water, my arms do all the work. It would be something like an able-bodied swimmer with their legs tied together and their hands in fists.”

Peggy coached the high school swim team and encouraged Beth to join for her senior year. My daughter competed in the unpopular events, like the butterfly. At meets, the top three swimmers scored in each event, so as long as she finished, she scored points. I added to the applause from the other spectators.

The Harvard swim team.
Beth with the Harvard swim team.

“It’s fun climbing out of the pool and hearing people clapping for you. It gives you a little boost of confidence.”

As a freshman in college, Beth was team manager for Harvard Women’s Swimming and Diving (HWSD). In the spring, she was invited to be a full member for her last three years of college, the first with a visible disability. She also competed on the U.S. Paralympics National Swim Team and, over the summers, on the Seneca Aquatic Klub in Tiffin, Ohio.

“I couldn’t imagine a better college experience and a large part of that was being a member of the Harvard Women’s Swimming and Diving team.”

During year-round workouts that each lasted about an hour and a half, Beth usually swam about 100 laps of 25 yards each. Her last year of college, during peak times in her training cycles, workouts could be two hours and 3,000 yards, almost two miles. Six days a week. Despite recurring bursitis in both elbows, she continued to set new U.S. Paralympic American records at Harvard home meets.

 “No matter what team we raced against, people always came up to me and congratulated me. It was kind of strange sometimes, but I guess it’s great for them to see someone with a disability compete on a college varsity team.”

After competing in Belgium with the U.S. Paralympic National Team, Beth qualified for the 2007 Parapan American Games in Rio de Janeiro. Peggy was named head swim coach for Team USA at
the games. Beth was co-captain and earned four medals: one bronze, two silver, and one gold. During the gold medal ceremony, on the tallest stand, she listened to the U.S. national anthem playing. For her.

Beth wearing one of her medals.
Beth wearing one of her medals during a competition in England.

“Rio was an absolutely amazing experience. Hearing our national anthem while on the podium is something I will never forget.”

Beth planned to be on Team USA for the 2008 Beijing Paralympics. She had declined her spot on the 2004 team to start college. After her senior season with her college team, she continued to work with Harvard coaches to prepare for Trials. And China.

“Thanks to four years of HWSD training, I know I am ready to take on my international competition in Beijing!”

Traveling to the Paralympics, I was in the air for 13 hours from Boston. There were only two events for S3 women, both 50 meters. Beth had been ranked seventh and eighth in the world in those events in the months leading up to Beijing — before three newly-classified S3 women entered the rankings in the top five.

“It truly is an honor to represent the United States at the Paralympics and to be part of such an incredible team. Go USA!”

I watched intently as Team USA joined the athlete procession in the massive stadium. I found Beth, but she couldn’t see me. She let Peggy push her manual wheelchair, a rare concession, to save her strength for racing.

“You’re surrounded by Team USA and you go down the ramp to the floor of the National Stadium which has 910,000 screaming fans. It was a pretty surreal experience.”

Beth made finals for both of her events. For her first five years of competitive swimming, the double-arm back was her fastest and the stroke she usually used for freestyle races. By Beijing, after countless laps and increasingly intense training, her forward freestyle won as her fastest.

Beth competing.
Beth competing.

“I felt prepared going in from all my amazing training at Harvard behind me and I was able to enjoy the moment as my heat was paraded out onto the deck and behind the blocks.”

Peggy waited at her lane, laying flat on her stomach with her body on the deck and her shoulders and head over the pool. The coach reached down, grabbing ankles and touching feet to the starting wall, for maybe the hundredth time. I watched Beth float parallel to the lane lines, then turn on her left side with her right arm straight and pointing the way.

When the eight S3 finalists left the starting wall for the 50 Free, most swam the backstroke. Beth’s forward freestyle looked smooth and beautiful, like a work of art. I cheered as loudly as I could, but she heard only an enthusiastic roar in the packed Water Cube.

I swam a 1:10.55, a best time and a new American record, which placed me fifth in the world.”

Beth set her fourteenth U.S. Paralympic American record at the 2008 Paralympics. Eleven records still stand today. Swimming opened windows to a wider world for both of us. I will always be grateful for the interesting places we visited and the extraordinary people we met.

 “What a great race!”

Beth and Cindy in China.
Beth and Cindy in China.

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Is It True That 'Anything Is Possible' With a Disability?

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At 17 years of age, my daughter Beth completed an application that asked for her motto. I watched as she gripped the pen awkwardly in her fist, writing with no hesitation, “Anything is possible.”

“Except when it’s not,” I thought.          

When Beth was 14, she lived on mac and cheese and played volleyball and softball — until I fell asleep at the wheel. Our car flipped across a dark Ohio field and we left behind an ordinary life.

I was a passionate disability advocate before Beth’s C6-7 spinal cord injury. After, I struggled to see the potential she saw in her new identity. Beth led and I followed, since between the two of us, she was the brave one.

Determined to be more independent, she accepted that it would take years to partially strengthen specific muscles in her arms and trunk. She continually tried to use her hands. In the rehab pool for physical therapy, she learned how to float on her back after endless tries and sheer force of will. She loved to float across the pool with her arms slowly moving underwater. She saw a world where anything was possible.

I wondered how her motto could be true, with or without legs and hands that worked? Beth’s whole outlook differed from mine. With no idea what to expect after her injury, she wheeled forward and found connections and community. I stumbled on my guilt and depression. Since her view was clearly better, I tried to understand. I discovered more than rose-colored glasses as her growing confidence propelled her from our small town in Ohio to unlikely places.

Beth thinks of her spinal cord injury as a fortunate accident. To breathe on her own and have use of her arms, with only an inch difference between her injury and one that requires a ventilator. To find a passion for mentoring and volunteering in the disability community. To be the first in our family to experience an Ivy League education. To work long days at a law firm where she can make a difference.

Beth on TV during the Beijing Paralympics.
Beth on TV during the Beijing Paralympics.

Beth also sees serendipity in her journey as a swimmer. Floating freely in the rehab pool at a time when it was difficult to move on land. Meeting a national coach two years after her injury. Competing around the world on the U.S. Paralympic Swimming National Team. Becoming the first with a visible disability on the Harvard Women’s Swimming and Diving Team. Setting her 14th American record at the Beijing Paralympics.

Serendipity? Perhaps, if you add the courage to fail and the gift of minimizing obstacles. I shared many adventures with my daughter and today, my world shines brighter than ever. Not in spite of her injury, but because of it.

Beth continues to see life through a rare lens. What I finally understand about her perspective is perfect in its simplicity: everything meaningful in her life is found in what she can do. It naturally follows that walking is overrated, along with the other things she cannot do. Potential is powerful if what matters to you the most is within your grasp. For the lucky ones among us — like Beth — maybe anything really is possible.

Read more at Struggling With Serendipity.

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