When a Woman Saw My Wheelchair and Asked, 'What Did You Do to Yourself?'

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My very first Best Buddies Friendship Walk was OK for the first portion of the event. It was February 20 2016 — 16 days after I had received a major surgery that fixed the chronic kneecap problems I’d had from my fifth-grade year till the middle of the second semester of my junior year of high school.

Best Buddies is an organization that helps  students and young adults who have intellectual and developmental disabilities. I’ve had been an active member of the ambassador training sessions and events like Time to Shine, an art and music talent show during the summer.

However this wasn’t my favorite event to take part in. Because of having the surgery and the fact that I have spastic hemiplegia cerebral palsy, I was having trouble getting around in my wheelchair because of the bulky cast on my left leg. My parents took turns pushing me around, and I was feeling pretty neutral about this experience as we started the walk.

A woman who noticed I was in a wheelchair looked at my cast and asked, “What did you do to yourself?”

I wanted to slap her in the face and gave a glare as to say WTF? I didn’t do anything to myself.

My parents understood my reaction and explained my situation. This experience has become one of the biggest reasons I hate it when people assume things about me.

If I am to give you the same respect I would give other people, please do the same to me. This woman’s question was so poorly worded. People need to know the way they ask their questions could have negative or positive results. It’s all in the wording.

As a result of this incident, I had convinced myself not to plan to participate in this year’s Friendship Walk. However, thanks to a friend I met through Best Buddies I did change my mind. He told me to see the positive side of attending. They needed volunteers to hold up poster boards that had letters that spelled out “inclusion” at the end of the walk and I decided I could help with doing that, as walking long distances is taxing on my energy. In the end, the reason I ultimately did not attend is because I had conflicting activities that day.

Never underestimate the capabilities of a person who has cerebral palsy, and take the time to learn about what it’s like for them. I’m going to take part in my second Best Buddies Friendship Walk, and I am proud to be an Ambassador of Best Buddies Arizona and hope one day the message of respect shines through.

It’s about time we break the negative stigmas ignorant people slap on us as if we were inferior human beings. It may be the one-year anniversary of when I received the major surgery that gave me back my ability to walk without chronic kneecap instability, but I want to help break the stigmas that leave people pitying us. Put yourself in the shoes of a person who has any disability, and change both your own and other people’s perspective of people with disabilities.

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Thinkstock photo by Tatomm

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Dear Future Husband of a Wife With Cerebral Palsy

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Dear Future Husband of a Wife With Cerebral Palsy,

Let me be the first to congratulate you on choosing your wife. I hope you chose wisely, someone you love and with whom you share many of the same hobbies and goals. You fell in love with her for so many reasons. She just happens to also have cerebral palsy, but as you know, that is only one aspect of her.   However, because she has cerebral palsy, there are some things you should know that will lead to a smooth and happy marriage.

Cerebral palsy can be a complicated disability, and CP can vary from person to person. Even though cerebral palsy doesn’t worsen over time, cerebral palsy can change daily. Some days spasms and tightness might be better than others. Sickness, weather, hormones and stress are all common factors in spasticity. When she seems to be having a difficult time, please just offer to help a bit more. You don’t need to bring attention to increasing spasticity, because this may lead to her being self-conscious about it. Also, as your wife ages, her disability might change a bit. Muscles and joints wear down, and things that were once easy may become challenging. I’m not saying this to discourage you, but to keep in mind so you can be there to support your wife.

As you already know, your future wife wants to be independent. Independence is important to just about any woman, but it might be more challenging to achieve when you have a disability. Discuss with her what she may or may not need help doing. But here is the tricky part. Even everyday tasks can be challenging, some days more than others. She might not always ask for help, but she might want it. For example, let’s say she can dress herself in her pajamas. Feel free to ask her from time to time if she would like some help. Or, be creative in helping her so it takes the focus away from the disability.

As strange as it might sound, your future wife would like to know you love and don’t mind helping her. If she needs assistance in eating, be the first one to offer to help feed her (or whatever the need may be). It’s important to show her that you’re in this marriage for the long haul, and she is your top priority. If you really don’t want to help her, you might want to reconsider the lifetime commitment of marriage. Let’s say that your wife has personal care tasks completed by personal care attendants. Keep in mind that personal care attendants do call off, get sick and sometimes need to find new jobs. You may need to step up to help your wife at those times.

Never use her disability against her in any situation or argument. Cerebral palsy cannot be helped. You can’t choose how tall or short that you are, and it is the same when you have a physical disability. She didn’t decide to have cerebral palsy. If you use her disability against her, you’re essentially abusing her emotionally and perhaps physically. Love isn’t about intimidation or being cruel. If you need to resort to these tactics in an argument, you definitely shouldn’t be getting married and you might need to get counseling so you can have a healthy relationship one day.

Your wife might have personal care attendants, and that will be a big change in your life. My best advice to you is to be courteous, clean and do your fair share around the house. Never expect the personal care attendant to clean up after you. You can fill and empty the dishwasher, you can vacuum, you can put your clothes away, and empty the trash. I think you know what I’m getting at here – your wife isn’t your maid, and neither is her personal care attendant.

Cerebral palsy most likely won’t interfere with your wife becoming pregnant. Having children is amazing, and if both of you want children, by all means enjoy. Depending on her limitations, you’ll need to discuss what she might or might not need help with. Stay flexible, patient and kind. Things will fall into place if you work as a team, remain loving, and always be friends. Congratulations, and have a long and happy marriage!

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To Mom and Dad, Who 'Get Me Through It All' With Cerebral Palsy

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Recently, I found the huge folders full of my medical reports. Inside were pages full of evaluations from doctors, therapists, and psychologists. Flipping through the piles and piles of notes was like getting to sort through my own little time capsule. In the hours I spent reviewing my life with cerebral palsy during the late 90s and early 2000s, I couldn’t help but think “Wow. Everything I went through, Mom and Dad went through too.” `

Thinking about the medical world I was thrown into brings back so many emotions. Mom and Dad, thank you, first and foremost for allowing most everything we did to feel “normal.” I never realized how often one of you was taking me to doctor’s appointments. In these settings, I was surrounded by adults who tended to speak around me rather than to me. At times, I felt like a little spy keeping my ears open and watching everyone like a hawk, trying to figure out if anything was going to hurt that day. With three surgeries under my belt by age 5, no one could fool me by saying that little cup full of medicine “tastes like cherry!” or that by giving me a teddy bear, I would somehow be distracted from the needles that were about to be put in my legs!

But if there were two people I could always look to for reassurance, it was you. Thank you for never hiding anything from me. You understood how I always needed to know what to expect, and your honesty provided a sort of comfort. Thank you for the reassurance, even when it meant answering my same questions over and over again. In those moments when pain couldn’t be prevented, you stayed next to me, squeezed my hands tightly, and gave me permission to let my agony out. I can only imagine what it must have been like to watch me cry. Dad, thank you for being my rock in those moments. I’ll never forget you scooping me up, hugging me tight and making it all better with a milkshake.

As an adult, I understand the decisions you had to make on my behalf were not taken lightly. All that “stuff” we had to do at home: physical therapy, night splints, the eye patch, and that awful electrical stimulation machine! On plenty of occasions, I remember getting frustrated and trying to negotiate because I didn’t want to be stretched… again, or put on my eye patch… again, or wear the “tickle machine” (news flash: those electrical pulses were far from tickles)… again. 

Thank you, Mom. You were so incredibly patient on the days when I thought all my whining and arguing would break you down, and yet it never did. Thank you for all those times you both said, “We know it stinks kiddo, but you gotta do it anyway.” I couldn’t see things with a long-term perspective, but I am so grateful that the two of you were always looking ahead so I could reach my full potential.  All those times you said, “Annie, one day you’ll understand why you have to do all these things you don’t want to do,”  I hated hearing it. But I’m here to say “Yes, I understand now.”

Thank you for being my best advocates, teachers and friends in the doctor’s office and beyond. There were so many things that went unnoticed to the rest of the world: the meetings, phone calls, and car trips all over the place. You spent many hours insisting for me to start, stay, and thrive on a mainstream educational track in school. You reminded me the importance of finishing what I started, even on the days when I cried wanting to quit ballet. And most importantly, you always reassured me that as long as I was doing my best, nothing else mattered. Everything you taught me, whether directly related to my CP or not, has inspired me to give 110  percent in everything I pursue and to live life with an open mind and an open heart.

Most importantly, I am grateful that God gave two amazing parents. I’m blessed because all I’ve gone through has only strengthened our family bond. I know that all you’ve done for me, even when it was tough, has been done with love.

Thank you for everything.

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Thinkstock photo by Liderina.

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What Writing Has Given Me as a Person With Cerebral Palsy

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I’ve seen countless stories about other individuals with disabilities, and I appreciate all  they have accomplished. In my book, a win for one is a win for all.

I realize how blessed I am, and my faith in Jesus Christ is very important to me. I was born weighing 1 pound, 8 ounces. The doctors were unsure if I would make it. By the grace of God and with my family’s love and support, I am here today. I was born with cerebral palsy. I was in and out of the hospital a lot growing up and spent time in physical and occupational therapy.

Being born with cerebral palsy hasn’t been easy, but my family instilled in me the importance of accomplishing my goals despite having this disability. Having that mindset propelled me to succeed at many things including graduating high school as Co-Salutatorian, graduating college with my Bachelor’s and Master’s degree in journalism, and becoming an author, blogger, and ghostwriter.

I appreciate all I have accomplished and feel as if I have so much more to do. My passion is to inspire others to achieve their goals are and not let any negativity deter them from their full potential. If sharing my story can inspire someone to attain a goal of theirs, then I feel I have done something wonderful. It took me some time to understand and figure out my purpose and potential here on earth, but even though I have my days of uncertainty, I believe God makes no mistakes and I am meant to help others find the courage within themselves to accomplish what they want in their life.

I’ve been very fortunate to write and interview some amazing individuals through the course of my career as a freelance journalist, and I know the best is yet to come. For me, writing is a way to evoke emotion, start a conversation, and to be informed about something or someone you wouldn’t have known. Writing is my form of expression. As people with disabilities, we may not feel comfortable sharing our story with others. It can be difficult talking about the stares from other people we may get when we go out, being upset over the inaccessibility certain places have regarding people with disabilities, and discussing our own personal struggle for acceptance within ourselves.

But just as we have struggles, we also have many triumphs, and I am fortunate and thankful to have accomplished the things I have. I thank God every day because I believe He has allowed me the opportunity to do what I love.

Read Morgan’s work at Morgan Lee Reviews.

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Thinkstock photo by Alex Raths.

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How I Learned to Embrace My Walker Again

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I have a confession. I used a walker  starting in pre-school until I was 10 years old, when I walked independently without it for a few years. Throughout this time, I remember feeling very embarrassed and ashamed of my walker.

While feelings of embarrassment are a part of life for everyone, feelings of shame about disability, at least for me as a child, were difficult to process. I’m nearly 22 now, and even though I’ve been lucky enough to walk primarily on my own more than most of the time, my recent struggles have caused me to reach for and embrace my walker. It’s a far cry from the shame I felt as a child.

As I write this, I wonder if kids today feel shame about their mobility devices. From what I’ve seen, they have some pretty neat and cool-designed walkers, wheelchairs, braces, etc. I had some of those options as a kid, but they were not nearly as nice as some of the ones I’ve seen in recent years, and they were definitely harder to get.

I will admit I did drag my feet when the mention of using my walker again was brought up during a physical therapy appointment, after I informed my physical therapist of two falls I had that week and the difficulty I was having walking outside on my own. I dragged my feet, but I knew it was for the best and would help me until I got well again.

The first thing I did when I went home was consider what I would need to function independently with my walker. I went to Pinterest looking for accessories. I bought a cup holder, clips for my purse or other bags I carry, a bag for the front of my walker that can double as a purse, and some tennis balls with smiley faces on them for my walker. (All but the walker bag came from Top Glides, and the walker bag was from Amazon.)

Another thing I did was have a friend of my mom’s duct tape my walker in a cool wolf pattern. You can do this, too. Go to stores like Target or Walmart. They usually have large selections of designed duct tape — quite cheap! By simply changing the appearance of your devices to a customized accessory, it makes you more keen to reach for them when needed. After my devices got a makeover, so did the way I thought about them.

Of course, I don’t think it’s that easy. A lot of growing up has happened between being 10 and nearly 22. So, things just change with time. I started to realize how useful my mobility devices were, how much they helped me and enabled me to live my life and do the things I want to do. In time I learned my assistive devices were things to help me, not things that were forced upon me.

This article originally appeared on CP News Today.

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What It Means to Love Someone With Cerebral Palsy

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When I was around 4 years old, I was watching “The Little Mermaid” with my mom. We had reached the final scene of the movie where Ariel and Eric are getting married. All of the sea creatures Ariel had befriended, such as her best friend Flounder, celebrate her love with her. My mom jokingly asked me as we watched the credits, “Ashley, will Flounder be at your wedding?”

“No, I am not going to have a wedding,” I answered simply but firmly.

My mom immediately became confused. After all, most young girls dream of their wedding day – especially with the way all the Disney movies I was obsessed with romanticized them. “Why will you not have a wedding, Ashley?”

“I don’t think anyone would ever want a wife with cerebral palsy,” I responded. Somehow, at the young age of 4, I had already received this societal message that people with physical disabilities do not find their Happily Ever After. I was already convinced I was not worthy of anyone’s love.

This happened nearly 20 years ago, and yet the message still haunts me like a looming shadow just over my shoulder. I still worry about whether or not my future girlfriend will love me once she understands the extremity of my disability – of just how much it already limits my capabilities and how much it will continue to do so as I get older. I worry she will never be attracted to my body that trembles with spastic muscles. I worry she will be repulsed by my disability in the same way I can be.

Whenever I go on a first date, I slightly dread that talk where I have to explain what my disability is – and the way my date’s eyes carefully scan my body, as if looking for it. Whenever I have sex for the first time with someone, I am weary of what my muscles will do and of the possibility of my muscle spasms turning them away. I still have work to do with my self-esteem after nearly 24 years of living with cerebral palsy. How can I expect someone else to see my beauty and worth in a significantly smaller amount of time? But through being in various relationships, I have learned what it means to be in a relationship with someone who has a physical disability, specifically cerebral palsy.

Loving someone with cerebral palsy does not mean you overlook their limitations. It does not mean you ignore the imperfections that make their body unique and different. Loving someone with a physical disability means you love them with their disability. It means you recognize that their disability is a part of them, nestled within their muscles and bones. It means you know every aspect of their disability, and it only makes you want to be that much closer to them.

It means you hold them when they are having muscle spasms or when their joints are
on fire. It means you walk a few paces slower than most other folks do so your partner does not have to walk alone. It means you are with someone who may sometimes loathe what their body does to them, who may be ashamed of what their body looks like – and you cannot overlook that.

Loving someone with a disability means you understand that nothing in life is constant – including our own bodies and very beings. We are always changing and weakening. But when you are dating someone with a disability like cerebral palsy, those changes may happen at a more rapid pace, and loving them means you are attracted to their body during every stage.

Loving someone with a disability means you may be their advocate. It may mean you need to jump on a subway ahead of your partner so you can reserve a seat for them in the crowded car while they are still a few paces behind and boarding. It may mean you sometimes help your partner do daily tasks like cutting their fingernails or opening cans. It may mean you help them find accessible entrances and places to sit, and offer an arm when they need to go up or down stairs. It may mean you fight to make places accessible if they aren’t yet. It may mean you massage their limbs while you have sex so they do not cramp up. It may mean you remind them often of how wonderful their body is despite their limitations, even when they do not see it themselves. It means you become a physical and emotional support for your partner – just like any partner in any relationship.

Loving someone with a disability may mean you understand your own body more clearly. It may mean that you end up completely reevaluating and redefining how you understand bodies, strength, beauty and what partnership looks like. This love may allow you to expand your understanding of sex, intimacy, and co-partnership in a really beautiful way.

Most importantly, loving someone with cerebral palsy will mean something different for every person and couple. But no matter what, we are all worthy of love and marriage if that is the path we choose for ourselves. Even though we all deserve this option, many of us came to believe from a very young age that this life milestone will never be attainable for us. And it takes years to deconstruct that notion and recognize it for the lie that it is.

Loving me means you kiss my scars, help me throw away these problematic misconceptions society has taught us, and we learn and grow together every step of the way.

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