What Pride Means to Me as a Queer Woman With a Disability

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When I came out as a queer woman, I adopted a new definition of the word pride. It no longer simply meant an allegiance to a sports team or feeling confident in myself, but instead represented adopting a self-acceptance of my identity and my community. Pride to me means you are proud of your community’s history, your movement, and yourself for being a part of it. Pride is loving yourself and advocating for yourself. Having pride requires a journey of immense self-acceptance and growth. During queer events, I can feel the pride swell in my heart in a way that is hard to put into words – it makes me feel whole.

June is National LGBTQ Pride Month, commemorating the Stonewall Riots that occurred in New York City on June 28, 1969. On this night, some brave transgender women grew tired of being kicked out of public spaces for simply being who they are – for presenting their gender in nonbinary ways and for dancing with the same gender – so they fought back. They resisted the police, and they resisted the constricting messages society had taught them. One year later, the LGBTQ community in New York City commemorated the riots with a march – and Pride season was born.

Pride is rooted in these activists who resisted and owned their identities with no shame. It is tied to an inherent need to push our society to be more accepting and more kind. Pride is rooted in the mourning that came from our community dying of AIDS in the 1980s and onward, and the current moment as we figure out how to move forward in an ever-shifting political climate.

As I became more confident in my pride as a queer woman, I yearned to feel the same way about my physical disability. It saddens me to say I do not feel this type of pride about my cerebral palsy. I do not feel the same level of self-acceptance, of camaraderie, of being ready to flaunt my disabled body and scream that I have CP from the rooftops, as I do with my queer identity. I do not feel proud of what my disability does to me – and it does not make me feel whole. Instead, my disability makes me feel weak and less than in many ways.

It was not until I felt the pride that comes with my queer identity that I understood how much my pride in my disability was lacking. Every pride month, I am reminded of the journey I took in self-acceptance and personal growth that allowed me to learn to love my queer identity and queer community, and to feel pride in it all. I am hoping that time, patience and growth, I can adopt these same feelings towards my disability. I am working towards being proud of my cerebral palsy, but Pride Month also reminds me to accept wherever I am in my journey.

My queer identity has taught me more about acceptance, love and community than anything else in my life. I am continuously striving to apply those lessons to how I view my disability. On this Pride Month, I urge everyone to accept themselves wherever they are on their journeys of self-acceptance. Whether you are at the point of marching in parades or just coming to terms with your identity, celebrate yourself. Celebrate your community, your history and your movement. On this Pride Month, I am pushing myself to adopt this level of pride in all aspects of my identity – including my disability.

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Thinkstock image by Bennian.

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When Other People's Discomfort Limits Me as a Person With a Disability

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The first time you try anything it’s often uncomfortable. Riding a bike feels strange until we become accustomed to the repeated motion. Speaking in front of a large group of people can be intimidating until you have done it a number of times. Countless quotes and numerous philosophers remind us that discomfort is good; it helps us to grow and change, becoming better versions of ourselves. If we all agree discomfort can be good, then why are so many people afraid to let me feel uncomfortable?

Every year in elementary school we took the Presidential Physical Fitness test. As part of this challenge, students were asked to walk or run a mile. Up until fifth grade, I was content to sit on the sidelines, cheering for my peers as they completed the race. But at age 10 I decided I wanted to give it a try. It didn’t matter if I fell, finished last or even if I didn’t finish at all; I just wanted to see if I could do it.

When I approached the gym teacher declaring my intention, she flatly said no, arguing it would be too hard and frustrating for me. In a pathetic attempt to include me, she had me collect bottle caps given to me by my fellow students as they completed each lap of the challenge. My job was to ensure they weren’t cheating, a far cry from actually walking the mile.

In the years since I often think back on this experience. While I understand why my 10-year-old tween self didn’t challenge the teacher’s decision, I still don’t understand her logic. The fact that I walked differently and more slowly than the rest of my peers was never a secret or a surprise to me. No one could protect me from the image I saw when walking towards a mirror or my reflection in the window. If I was willing to try something new and be uncomfortable, why was this teacher so against the thought of my taking the risk?

Was it a desire to protect me? It was no more likely I would hurt myself walking circles on the grass field behind the school than while riding my bike or playing basketball in my driveway — and beyond that, I wasn’t afraid of falling. Was my teacher so afraid of her own discomfort that she couldn’t stand the idea of a student’s discomfort?

I can understand the parental tendency to remove obstacles from a child’s path, but what does this teach them? My cerebral palsy has given me countless obstacles, and while I never appreciated any of them at the time, there is no question they have benefited me. Most athletic pursuits are uncomfortable for me, at least in the beginning, but if I avoid this discomfort, I limit my own abilities and never learn my full capabilities. So do me a favor, give yourself permission to be uncomfortable.

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Why I No Longer Call My Side Affected By Cerebral Palsy My 'Bad Side'

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Five months ago, I stood in front of the mirror and called my body “beautiful.” For the first time in years, I did not criticize my appearance. I did not disparage my physical features. I admired every curve, every scar, every tensed muscle. I discovered strength cloaked behind weakness — a powerful, invisible strength I have carried with me for my entire life.

In that moment, as I saw myself clearly for the first time in my life, I made a vow — a pact sealed with a loving look and a gentle smile.

I would never again refer to the left side of my body — the side affected by my cerebral palsy — as my “bad side.”

I have long struggled with my body image, primarily as a result of a lifetime of internalized ableism.  Throughout my childhood, medical professionals routinely emphasized strengthening my affected side, helping me walk “better,” and “fixing” the complications inherent in living with cerebral palsy.  After years of therapies, as well as an orthopedic procedure at age 10, I was convinced there was something “wrong” with my body. Consequently, I began to view my left, affected side as my “bad side,” and my right, unaffected side as my “good side.” Quite literally, I believed I had a “right” side and a “wrong” side.

My body was not “wrong,” but I was.  My perception of my body was clouded by my complicated, distorted view of disability — a perspective informed by years of inwardly-directed ableism. Although I fully accepted others with disabilities, I struggled to accept myself as disabled.  I perceived my own disability as shameful and was unable to extend myself the same love and respect I showed others.

A few months ago, I began publicly writing about my life with cerebral palsy and was forced to confront my pent-up cascade of internalized ableism.  It was then I fully realized that living with a disability is never a cause for shame.  Living with a disability is my “normal.”  It is not “bad.”  It is not “wrong.”

And neither is my body.

Although I had become conditioned to believe that my affected side is my “bad side,” I no longer allowed myself to use that deeply-entrenched descriptor to refer to my body.

Considering the weaker side of my body my “bad side” and the stronger side my “good side” not only devalued myself, but it also subtly disparaged the entire disability community.  By insinuating that there is something wrong with the side of my body affected by my disability, I regularly reinforced the misguided, ableist stereotype that disability is unfortunate and those with disabilities are “broken.”

We are not unfortunate.

We are not broken.

I now consider my disability to be a gift I would never exchange. Since I began writing about my life with cerebral palsy, I have had the opportunity to connect with others in the disability community. I have received words of support and encouragement from people from all walks of life who, in some respect, are touched by disability. I have discovered that I can transform the lives of others with disabilities through writing, helping them embrace their medical conditions just as I have come to embrace mine. I have learned that as a person with a disability, I am never alone.

I have never felt more fortunate.

I have never felt more whole.

I have come to realize I can no longer justify using terminology that inadvertently tears down the very community that has built me up. I refuse to use language that perpetuates the misguided notion that disabled bodies are wholly incapable. I will never again refer to my affected side as my “bad side,” not only as an act of love towards myself, but also as an act of respect for the entire disability community.

I no longer say I have a “bad side” because I view my entire body through a lens of love.

I no longer say I have a “bad side” because it reinforces the outdated, deleterious stereotype that disability is tragic and people with disabilities are broken.

I no longer say I have a “bad side” because it undermines the strength and progress of the very community that has taught me to embrace myself.

I no longer say I have a “bad side” because I know the implications of self-directed ableist language are far-reaching, affecting society as a whole.

Five months ago, I stood in front of the mirror and called my body “beautiful.” Five months ago, I vowed never to refer to the side of my body affected by my cerebral palsy as my “bad side.”

Today, I continue to challenge my internalized ableism. Today, I know my vow will never be broken.

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How My Son's Karate Teacher Taught His Students About Inclusion

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I think most teachers and parents want children with disabilities to be included in the regular activities of their peers. But sometimes, we are not sure how to foster such an environment. We don’t know how to get kids to include others without telling them to do so, which usually ends up just being an inauthentic experience for everyone. Having a son with cerebral palsy, which gives him mobility issues, I often get to see how some people handle these situations. Some do it better than others, but one example shines among them all.

My son Arlo was 5 years old when we signed him up for karate lessons as an added physical therapy and as a way to help boost his confidence. It started out with private lessons with a superb teacher Sempai David Corrigan of Progressive Martial Arts Academy in Oak Ridge, Tennessee. He was great with Arlo, and I would soon learn, with all children. The goal was to integrate Arlo into the group class called The Little Dragons.

When the day came for Arlo to join, I watched from behind the partition and prayed he would do OK among the eight other students whom he’d never met. If you’re a parent of a child with a disability, you too have likely held your breath with tension and hope in similar moments.

Sempai David introduced Arlo to the class and they began their first activity, which was a relay race. Oh no, I thought to myself. He was going to have to be a part of a team. Of kids counting on him to help them win. To be the fastest! I couldn’t believe this was how it was going to start.

Each student was supposed to bear crawl all the way across the mat and back before the next teammate could go. When Arlo was tagged and he started across the mat, the students all fell silent and one of them asked, very loudly, “Why is he so slow?”
Arlo heard this and stopped. He turned around to look at his new classmates all watching him. My heart broke.

Sempai David answered the question with, “We don’t talk about our classmates unless we’re encouraging them. So let’s cheer him on!” Then he started clapping his hands and said, “Go, Arlo! Go, Arlo! Go, Arlo!” Soon the whole class was joyfully joining in on the chant, jumping up and down, discovering how much more fun that was than pointing out his “flaws.”

Arlo continued on with a smile and finished the lap. His team lost. Sempai David congratulated the winning team and said, “The bear crawl is a fun race, but all of you were so set on being the fastest and winning, that each one of you fell as you scrambled across the mat. All of you except one. Do you know who was the only student who didn’t fall?”

One by one the students all said, “Arlo.”

“That’s right,” Sempai David said. “And the reason he didn’t fall was because he was paying attention to his form instead of his speed. In martial arts, having perfect form is the goal, not speed.”

They moved on to other activities. At the end of class, Sempai David handed out stripes to be added to students’ belts for accomplishments, and as a way to signify a step closer to earning their next color belt. Several students received a stripe, but Sempai David said someone earned a special patch that day for their gi. He held it up and told everyone, “It says Perfect Form. One of you achieved perfect form today. Do you know who it is?”

One by one, each student answered. “Arlo!” Again they all clapped and cheered for him as he got up to receive his patch with a big, proud smile on his face.

After class, all I could say to Sempai David was, “Thank you,” a loaded couple of words. If I had said more at the time, I would have risked breaking down in tears. I was not only grateful, but in awe of how he took the new “different” kid and turned him into a role model simply by recognizing his unique qualities and celebrating them. I was thankful that he showed a bunch of kids how much more fun it is to celebrate and encourage others rather than cutting them down and excluding them. And although they did not know it, that day each kid experienced how much better they felt about themselves by participating in inclusion. That is how it’s done.

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How Being My Mom's Caregiver Changed My Life

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I’ll never forget my mom’s reaction the first time she saw me walk. I’d walked since I was about 5 years old, but as I approached 40, my gait was drastically different. I’d just had selective dorsal rhizotomy (SDR), a life-changing surgery that removed the spasticity caused by cerebral palsy. While we waited for the elevator to open, my mom’s eyes welled up when she said: “I’m sorry, I didn’t know.”

Standing there stunned, clutching my walker, I hugged and reassured Mom, trying to hold back my own tears. I cried realizing the beauty in the moment —  the fact that she had this thought and the ability to express it to me. As Alzheimer’s invaded my mom’s brain, she was having a much harder time understanding things, she was frequently at a loss for words, and when she tried to speak, she often didn’t make sense.

My mom raised 11 children without driving a car or using a computer. I am her youngest child, the only one born with a disability. We’d never really discussed my cerebral palsy or how it affected either of us. When I saw the pain in her eyes as she apologized, I knew what I had to do: pay it forward, share my SDR story far and wide! I didn’t want adults and children with CP or their parents — to stumble upon this surgery on Facebook like me. I discovered SDR when I entered a caregiver contest in a desperate attempt to help my mom. I wasn’t looking for something to help my disability. My love for my mom led me to the surgery that would change my life.

I believe knowledge is power, and my goal was to give the CP community this game-changing information. If my story helped one person or one parent like my mom, who feels they didn’t do the best for her child, it would be worth it. On July 29, 2013, (four months to the day of my surgery), The Huffington Post published my article: “SDR: Life-Changing Surgery for Cerebral Palsy.”

What happened next is truly amazing! In the four years since I shared my story, it’s been re-published, referenced on CP blogs, etc. I’ve heard from so many people — in the U.S. and around the world — about how my article changed their life or their child’s life. I mentor potential candidates, answer (non-medical) questions whenever someone is considering the surgery. SDR led me to a greater purpose. I’m a disability/SDR advocate raising awareness for cerebral palsy on my blog, and my What CP Looks Like Facebook page is changing the world’s perception of people with CP.

My mom helped people her entire life.  As her daughter and one of her primary caregivers, I’m proud to carry the torch of keeping both the tradition of giving — and her memory (she died four months ago) — alive.

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The Teacher Who Inspired Me as a Student With Cerebral Palsy

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As a high school student with cerebral palsy, taking health class was therapeutic. I learned it was acceptable to love myself regardless of my weaknesses. My teacher, Dr. Carlos Lugo, encouraged his students to have healthy attitudes and high self-esteem. He suggested that his students look in the mirror every morning and say, “I am important. I am unique. I’m worthy as a person.” This was a way to create a positive image about ourselves, an image that would guide us throughout our lives.

I was the only student in Mr. Lugo’s class with a physical disability. He never treated me differently from the rest of the class. I noticed special ed students were often treated differently from students enrolled in regular classes, especially in terms of expectations for higher education.

Mr. Lugo encouraged the health class to look with optimism toward the future and to set goals despite any challenges or criticism we might face. I felt especially motivated when he encouraged everyone in class to attend college. I never before heard any of my teachers mention a word about attending college. His advice made a strong impression on me.

This June it will be 20 years since I graduated from high school, and I am still in contact with Mr. Lugo. We have become close friends. When I am going through a tough time and I need encouragement, I just grab the phone and call Mr. Lugo. Hearing his words of wisdom helps me to cope with the situation. If for some reason he is unable to answer my call at that moment, he responds back the next day or so.

Throughout my college journey, I kept Mr. Lugo updated about my progress and my setbacks. I remember a couple of times when I phoned him and explained how challenging it was for me to keep up with my academic responsibilities. He always had encouraging words for me, even when I returned to college after dropping out during one of my most difficult period. I especially recall when he told me this: “The  goals that seem too hard to accomplish are the ones that end up being the most rewarding, because of the struggles that we had to encounter along the way.”

Sometimes talking over the phone is not enough. I ask if can come over his house a Sunday evening. Like a father and a daughter we spend time sitting in the living room talking while we enjoy a glass of wine. Talking with Mr. Lugo is like talking with my own father. That is how close our friendship is. Then, his wife cooks dinner and invites me to join the family at the table, making me feel at home.

Four years ago, after a very long journey, I obtained a Bachelor’s degree in
communication with a concentration in print journalism and a minor in English.
Graduation day was a long and exciting day for me and for my family and friends. The ceremony was held in the morning and lasted for three hours. Afterward, we went out for lunch to celebrate. Once we got home we were tired. All my parents wanted to do was to take off their shoes and relax.

Then I received a phone call from Mr. Lugo’s wife to congratulate me on behalf of the family. He wasn’t able to attend my graduation due to his busy schedule. A while after I hung up, I told my parents I wanted to stop by his house. We lived just a few minutes away.

I called Mr. Lugo’s wife back, and asked her if he would be home and if it was OK for my parents and me to stop by. His wife said yes. It was a weekday and my parents thought that it wasn’t appropriate to visit him on a weekday, since he is a very busy person. I was determined to go anyway. It felt important for me to visit Mr. Lugo while I was still wearing the graduation gown I had put on early that morning.

Once my parents and I arrived at Mr. Lugo’s house, we were welcomed by him and his family. He asked his wife to take a photo of the two of us. For me, going to Mr. Lugo’s home and being in a photo alongside my former teacher and mentor while wearing my graduation gown, was my expression of gratitude. It was a way for me to say to Mr. Lugo, “Thank you for believing in my abilities. Thank you for not focusing on my disability. Because of your support and encouragement, I was able to start a new journey and overcome my initial insecurity about accomplishing it.”

Like a farmer who plants seeds every spring and then gathers his harvest in the fall, Mr. Lugo helped me to grow. Back in high school, he planted a seed of healthy self-esteem in his students. The seed of believing that I was capable of reaching my goals despite the criticism and setbacks I might encounter along the way.

I strongly believe that there are many wonderful special education teachers from different backgrounds out there doing an excellent job. Sharing my own story is a way to point out the difference these teachers make in their students’ lives every day.

Juana Ortiz’s book “I Made It” is available on Amazon.

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