At the Towpath Half Marathon finish line.

How I Completed a Half Marathon One Awkward Step at a Time

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Is it adversity or just life? Cerebral palsy (CP) can really blur lines. Take cooling temperatures for example. Given my spastic CP, my muscles tighten increasingly in the fall and winter. Therefore I must make an extra effort to keep myself stretched out. Some might view this as a challenge, an example of adversity to overcome. Yet I deem the situation simply life. When you know no other way, cerebral palsy becomes your “norm.”

I am not one to feel like a champion over adversity. However, one recent event leaves me beaming with pride. On Sunday, October 9th, 2016 I completed a half marathon. 13.1 miles is a challenging task for most people. Imagine the additional challenges cerebral palsy creates.

“Athlete.” Growing up, that description certainly eluded me. My two brothers played sports, but the closest I came was an after-school basketball program in second or third grade. I took swimming lessons, too, but even those ended once the swim instructor felt I could not advance to the next level. By junior high I received a pass from actively participating in gym class. I earned my physical education credit via an alternative method.

These decisions were well-intentioned. My parents sought to preserve my physical safety, not to limit me — although, I admit back then I wasn’t so understanding. I only grew to appreciate their perspectives while writing my cerebral palsy memoir Off Balanced.

Between my cerebral palsy and lack of history with athletics, I seemed an unlikely candidate to complete a half marathon. Various physical obstacles combined together to intimidate me, taunting “You can’t do this.”

Determination, or maybe sheer stubbornness, protected me. My spirit refused to break. Instead I met the adversity head on, one step at a time.

August 19th, 2014 marked the day I started seriously training for a half marathon. I clipped on my brand new pedometer and off I went. Four-and-a-third miles later, I returned home to shower. The hot water ran down my sore body, bringing great relief. Afterwards I sprawled out on the couch and watched TV all evening. Less than a third of my goal distance rendered me completely exhausted! How could I ever complete 13.1 miles?

Soon I found my answer: consistency. I began walking twice a week, one short walk and one long. Slowly my endurance increased. Eventually the distances for my “long” walks became the “short” distances. Five, six, seven miles no longer seemed trying.

Increasing my endurance involved ups and downs, quite literally! Throughout my training I fell, multiple times. Often uneven sidewalks caused the missteps. Thankfully my  only injuries were only minor scratches or soreness. Still, I recognized the importance of improving my balance. Fewer falls meant risking injury less frequently. Again I discovered progress via consistency. In August 2015 I added reverse crunches to my daily exercise arsenal. Months passed and I gradually noticed change. Full blown falls evolved into slight stumbles. I often thought “a year ago I would’ve fallen,” but I no longer did.

One of my biggest challenges was a fairly sneaky one — self-doubt. An internal voice questioned my abilities. “Are you going to be fast enough?” “You know the Towpath course is narrow. Are you going to be able to stay out of other competitors’ ways?”

I was empowered to silence my inner critic by support received via social media during my training. Others’ encouragement put me in the right place mentally. I approached my speed concerns logically. Before registering for the half marathon, I researched last year’s results. My worries washed away when seeing I could keep pace with the slowest times. Regarding the path’s narrowness, I relied on positive feedback to summon courage. “There is only one way to find out,” I told myself.   

Man, am I glad I ignored my fears about the path! Crossing the finish line and completing the half marathon left many emotions running through me. I was exhausted and hungry, but my feelings of joy, confidence, and pride won out. Two-plus years’ worth of consistency and supportive words all led to that incredible moment.

I’m not sharing my story to brag. I hope my experiences may inspire you, and leave you ready to work consistently towards your goals. I hope to motivate you to divulge your ambitions to friends and family, and enable them to cheer you on.

Here are more details on my half marathon journey.

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Why I Don't Regret Throwing My Leg Brace in the Back of My Closet

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As a little girl, my AFO (Ankle Foot Orthotic) brace was on my left leg almost all day long. Every few months while I was growing, I’d get fitted for a new one, excited to choose what pattern I was going to have imprinted on the brace. If I remember correctly, they ranged from jungle animals to butterflies and even “The Flintstones” characters.

At age 7, with the permission of my doctor and support of my parents, I was able to stop wearing my brace. Frankly, much of the decision was made because of the impact it had on my self-esteem. I didn’t want to feel different in school, and I didn’t want to answer questions. My surgeon, sweet old soul that he was, decided it had probably taken me as far as I could go, and that with regular PT, I could be more effectively strengthening and stretching my weak muscles. My leg was also visibly atrophied, because I couldn’t engage my calf muscles while in the AFO. The first thing we cheered about? “No more buying two different pairs of sneakers!” For years, my mom was forced to buy my left foot’s shoe one size larger due to the clunkiness of the AFO.

High school brought on a whole host of issues for me, most having to do with accepting the fact that CP will be a part of me for the rest of my life. I was very insecure about the way I was walking, and willing to do anything to help my gait improve. Because I’m technically only treated for monoplegic CP, we didn’t focus on a ton of interventions throughout my preteen and teen years. It was a blessing and frustration all wrapped into one.

Annie wearing her leg brace as a child.

Annie wearing her leg brace as a child.

At a routine appointment when I was 17, my neurologist asked if I was willing to be re-fitted for a new, short AFO, as he knew that my leg issues were affecting my mood and confidence. To be honest, I was excited! I went home feeling like I had hope to improve physically, thankful that a doctor could give me that chance. I spent lots of time figuring out the best way to conceal the brace when I wanted, as well as show it off with pride. I even put a sparkly green awareness ribbon on the outside, because who wouldn’t want to spread CP awareness?

I wore the brace pretty religiously for about 6 months, and I felt a difference in my gait at first. AFOs work by keeping the foot in a neutral position. I wasn’t dragging my foot anymore, so tripping began to happen less and less. But with all this came the reality of today’s orthotics:

– I could only wear it with sneakers, so I often felt as if the aesthetic of a cute outfit was being thrown off by a pair of running shoes. I felt like I had to sacrifice feeling pretty and feminine because of the clunky white thing on my ankle.

– A brace must be worn with thick socks to prevent it rubbing against your skin, so this made the summer months rather annoying. It was hot! I would often take off the AFO at the end of the day and find it covered in sweat.

— I loved walking with my brace on to feel my gait improve. I didn’t love taking off my sneakers to find blisters on my foot the size of Texas. After having it re-fitted twice by multiple pros, the blisters didn’t subside. Every step I took was painful.

The CP and orthotics community has made strides to increase quality of life, fashion, and improve ease of wear for kids these days, but we still have a long way to go. I’d love to be at the forefront of that campaign!

At a certain point I had to ask myself, was my brace really worth it?

My answer was no.

As I’ve navigated my young adult years, I’ve had plenty of epiphanies. This one hit me like a train…

Finding my confidence through embracing my left left leg in all of its skinny, slightly atrophied entirety and letting my limp show, well, that’s all part of my story. And it helps me feel SO much more beautiful inside and out than I would by hiding it with a brace. If I can’t embrace these flaws and learn to love them in their realest state, what kind of life am I living?

To all the kids out there who may be tackling the ups and downs with orthotics, keep going!  I will never dispute that they did help me become stronger throughout childhood. My brace was the reason I started walking! Trust your parents and doctors. But after a certain age, they took me as far as I needed to go.  So when you have that moment of feeling like you’d rather just wear cute shoes instead, go with it.

And if and when the time comes, don’t be afraid to throw your brace in the back of your closet for good. It was one of the best decisions I’ve ever made.

 

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The Lesson I Learned Watching My Son With Cerebral Palsy Change His Clothes

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My son has been diagnosed with global developmental delay and cerebral palsy, among other things. He has faced more obstacles in his three short years than anyone I know. Nevertheless, every day I see him continue to smile, laugh and find joy.

We have been working with occupational therapy for months to try and help him figure out how to dress himself and work on his self-help skills. Dressing and undressing yourself is something I used to take for granted. Many of us probably don’t realize the motor skills involved in moving your elbow in and back while pushing your shoulder in just the right position to pull your arm down. We may not realize the thumb coordination it takes to grasp the interior elastic of a sock and hold it open while using depth perception to gauge where your toes are meant to land in the sock, or the core stability you need to hold your body up while working your arms, your thumbs and your eyes to pull the sock back without falling over. When you are working through each moment and breaking it down muscle group by muscle group, it’s then we can realize how such a seemingly minuscule task can be so major.

The other night as we were getting ready for bed, not hurried or rushed, I noticed my son’s full interest was in getting undressed. I had this gut feeling this would be the time he could actually do it. I pulled out my camera with expectant excitement and began to watch his staunch effort at getting his shirt off. To give you an idea, the video is 15 minutes long. He started with his shirt. Three minutes and 46 seconds into the video, he gets his first sleeve out. At four minutes and 15 seconds, I try to help him with the other arm. “No, Mommy. Jackie do it.” I step back. At six minutes and 29 seconds, he gets the other sleeve off. Every step of the way, he looks back to me with a grin of delight. At seven minutes and 12 seconds he gets the shirt completely off. He squeals with excitement, throws his arms in the air and looks at me with such pride.

In this moment, I had an epiphany. Here is this toddler, supposedly the most impatient and easily frustrated type of human, who took over seven minutes to remove his shirt. Not once did he stop trying to get the shirt off. Not once did he ask for or accept help. Not once did he give up. He accepted the challenge thrown at him and embraced every success, regardless of how “small” it may have been, to get to the final goal. And ultimately, he was so proud of himself he even did a dance. This kid managed to capture every emotion in my body in this moment: pride, joy, bittersweetness, excitement and utter awe.

I’ve learned so much from my toddler’s patience and tenacity to get through these seemingly simple yet grueling tasks for himself without wavering or giving up — and his ability to take pride and joy in each step of the way. I don’t think I have ever been so proud of him.

Image via Thinkstock.

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Archer's Challenge Has Able-Bodied People Use Wheelchairs to Highlight Inaccessibility

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This week, hundreds of able-bodied people in Austin, Texas, will spend the day in a wheelchair to raise awareness of the accessibility issues people who use wheelchairs and other mobility devices face on a daily basis.

The initiative, known as Archer’s Challenge, was started by 20-year-old Archer Hadley, who has cerebral palsy. Archer’s Challenge began in 2015, after Hadley was frustrated by the lack of automatic doors at his school.

“Because I’m disabled, independence is a little harder for me,” Hadley said in a video about his organization. “One day, it was raining. As I’m trying to open the door, water is gushing on my back, I’m getting soaking wet. I tried this for about five to seven minutes and I got really frustrated. That was when I realized ‘Hey, I’ve been to a lot of public places that have automatic doors. Why can’t I do something about this?’”

From there, Hadley reached out to school administrators at Austin Independent School District to discuss swapping out the school’s regular doors with automatic doors. At $5,000 to $6,5000 per door, the school could not honor Hadley’s request for automatic doors. But Hadley wouldn’t take no for an answer, so he decided to raise money on his own by creating Archer’s Challenge. In the challenge’s first year, students at Austin High School could nominate another student to spend an entire school day in a wheelchair, with each nominated student paying $20 to participate.

“My last participants thoroughly understand why we need the buttons,” Hadley said. After last year’s challenge, Hadley and his peers raised more than $112,000 – enough money to install electronic doors in his high school and four other Austin high schools.

This year, the challenge runs from October 10 through the 15, with all money raised benefitting the Rosedale School, a school for children with special needs in Austin. And it’s not just student’s participating – educators; college students at the University of Texas, Austin; employees at Austin H-E-B grocery stores and Cabella’s outdoor retailers; local and state government officials and local news and media personalities each have their own designated day to participate.

On Monday, Chikage Windler, the chief metrologist at CBS Austin, did the channel’s weather forecast from a wheelchair. “This is my challenge to do the weather in a wheelchair,” Windler said. “As you saw, it’s a lot of coordination involved between moving the chair, pointing to maps and of course using the weather clicker.”

Beyond increasing accessibility in the Austin area, Hadley hopes his organization will foster a dialogue between able-bodied and disabled people.

We want to know what you think: Would you nominate someone to take Archer’s Challenge? 

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Tobey Elementary Students Raising $20,000 to Build Inclusive Playground for Classmate

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When a group of fifth graders at Tobey Elementary in Vicksburg, Michigan, noticed kindergartener Hannah Cook playing by herself in a sandbox, something didn’t sit right with them. They wanted to know why Cook, a 5-year-old with cerebral palsy, was alone with her aid and not with the other kindergarteners on the playground.

The answer: Tobey Elementary’s playground isn’t accessible, and Cook – who uses leg braces and a walker – can’t safely play on it. Now, students at Tobey Elementary are raising $20,000 to build an inclusive playground.

“I see her playing there,” Carcel Tharge, a fifth-grader at the school, told Fox17 News. “I go over and run to my friends and I’m like well is the school going to do anything? I’m pretty sure they are.”

Designing inclusive playgrounds that comply with the Americans with Disabilities Act’s (ADA) standards for accessible design are expensive and not often included in school budgets – as is the case at Tobey Elementary. The ADA does not require playgrounds to be fully inclusive to all abilities; it only requires playgrounds to provide wheelchair access to the play area.

Students approached school principal Mike Barwegen and asked what they could do to make inclusive play a reality. Barwegen helped set up a GoFundMe page to raise the $20,ooo needed to build a new playground. So far the students have raised almost $16,000.

The students hope to reach their goal soon so the playground is ready for Cook – who left mid-September to have surgery on her legs – when she returns in mid-November.

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How I'm Challenging Conventions as a Filmmaker With Cerebral Palsy

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It was my third semester of film school; by the end of it I’d have my fourth film.  I had made a quasi-personal film that was related to my disability before, but not as personal as the film I was about to embark on. This one required an unflinching honesty to a memory that was formative in a painful kind of way.

Cerebral palsy doesn’t quite lend itself to being a cinematographer.  In fact, being a filmmaker with a disability felt similar to being an adolescent with a disability who loved baseball — an analogy I thought was worth exploring on camera.

In my personal film about baseball, I decided to forego the aid of an assistant who usually shot my film for me.  The opening and closing shots were going to be jarring, spastic, me. “A Cerebral Game” has played coast-to-coast and won the Artist Vision Award at the 2016 Big Sky Documentary Film Festival.

It was the first time I had ever intentionally challenged the conventions of filmmaking. But after I saw how audiences reacted, I realized that my inability to adhere to the rules of filmmaking lent itself to more viscerally portraying my disability and, when relevant, my perspective.

My childhood friend, Dan Lee, and I started an organization called Through My Lens to enable students with disabilities to express themselves through video. One of the key components of Through My Lens’ mission is challenging the physical conventions of filmmaking.

With the recent ABC premiere of “Speechless” and this past summer’s valid outrage over “Me Before You,” I am once again reminded how crucial it is for people with disabilities to be able to tell their stories, author their autobiographies, direct their own movies.

Filmmaking not only enables me to express my perspective to an audience, but also allows me to understand my relationship with my disability. I learn about myself through my own films.

Who is to say a Deaf filmmaker needs to make films with audio? Who is to say a filmmaker who’s blind needs to have conventional visuals? And wouldn’t those films allow audiences to step further into those filmmakers’ worlds?

Through My Lens wants to plant these ideas in future filmmakers’ heads and combine public speaking with one-on-one sessions to brainstorm how a student can make amateur videos that would then be curated online.

Dan and I made an example of what we want students to do through a music video with my distinct walk as the beat of the song.  It took under an hour to shoot and didn’t require expensive equipment.

Let the Beat Walk from Reid Davenport on Vimeo.

With videos like this, Through My Lens will tackle the taboo of being disabled by allowing audiences to see the firsthand perspective of young people with disabilities. We want to equip them with the skills to educate, provoke and better understand themselves.

Learn more at Through My Lens.

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