Photo of a man sitting on a plane.

Mark Smith Says He Was Removed From American Airlines Flight Without Explanation

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Last Monday, Mark Smith boarded an American Airlines flight from Los Angeles to Philadelphia. Smith, who has cerebral palsy and writes about mobility for his site WheelchairJunkie.com, has flown hundreds of times before without any problems. But Monday’s flight was not like other flights, Smith claims, stating he was removed from the plane without being given any reason.

“I was sitting there with two women next to me, a fully boarded plane ready to take off and go back to Philadelphia, when out of nowhere a group of people asked the two ladies to get up and move, and very directly told me I have to get off the plane,” Smith told The Mighty. “One minute I’m a business man who happens to have cerebral palsy, and the next I’m being removed from the plane.”

Smith said he left the plane voluntarily, after which he claims he waited half-an-hour on the jetway waiting for his wheelchair. “It was me that went back to the ticket counter and without any question was able to book myself on a flight home,” he added, noting he was able to reschedule his 11:20 a.m. flight for 3:00 p.m.

American Airlines claims Smith was removed from his original flight because his wheelchair did not fit into the cargo hold of the aircraft. A spokesperson told The Mighty:

We have spoken directly to Mr. Smith and have apologized for his recent experience. Mr. Smith was rebooked on a later flight to Philadelphia because his wheelchair didn’t fit into the cargo hold of the aircraft. American does not tolerate discrimination of any kind and we are committed to providing a positive travel experience for all of our customers.

Despite American Airlines’ comment, Smith said he was never told his wheelchair did not fit in the cargo hold and that when he spoke to an American Airlines representative on Thursday, no reason was listed or given for why he was removed from the plane.

On Monday, Smith filed a complaint with the U.S. Department of Transportation. “The reality is that discrimination can occur, but that doesn’t mean it ever should,” he said. “To me, what this is about is about making sure that others are aware of treating others with dignity and making sure this never happens to another person.”

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When I First Saw My Life With Cerebral Palsy Represented on Television

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I am 10 years old. “Walk in a straight line, just how you normally walk,” says the physical therapist. In a subtle act of resistance, I attempt to make my slightly stiff gait smoother than usual, devoting my concentration to each step I take.  “Let’s try that again,” she says, gently. “Heel, toe, heel, toe, heel, toe…” I feel self-conscious as the physical therapist picks up her clipboard and scribbles down some notes. I am reduced to my gait, described by medical jargon, inadvertently dehumanized. I leave the session fixated on my gait — on how abnormal it seems, on how its abnormality seems to be everyone else’s focus, on how it will never be “good enough.” I develop a pervasive paranoia that others will reduce me to my gait patterns. It lasts for years.

I am 21 years old. “Just walk how you normally walk.”

“This is how I walk.”

“Oh, no… this is all wrong… You pronate.  You have a petite gait with a 20-degree kickout… Is this your long-term walking plan?”

A smile spreads across my face. I laugh at the absurdity of the measurements, jargon, gait corrections and long-term movement goals  This could easily be a scene from my life. But it’s not. It’s a scene from ABC’s new comedy, “Speechless.”

“Speechless” centers around a nonverbal teenage boy with cerebral palsy, JJ DiMeo, and his family. In this particular scene, JJ’s able-bodied younger brother, Ray, is forced to participate in physical therapy in JJ’s place, after JJ convinces his new, highly gullible aide that he “always miss[es]” physical therapy sessions. When the therapist insists on leaving the house and being compensated for her time in JJ’s absence, Maya DiMeo, JJ and Ray’s strong-willed mother, sends a bewildered, unamused Ray outside to take JJ’s place, with the firm declaration “We pay for physical therapy, we get physical therapy.”

Thus, Ray finds himself subject to the same gait criticisms and jargon ambulatory people with cerebral palsy regularly face in physical therapy. Ray’s confusion and disdain for the process amplifies as he attempts to follow the physical therapist’s instructions, which ironically makes his gait more pronounced. Later in the episode, the physical therapist’s words echo inside his mind (including criticism she never actually provided), and he feels too self-conscious to walk in front of his crush. “Why did you make me walk?” he shouts, rhetorically.

I too have felt the resonant, unceasing echo of gait correction — despite the fact that my gait is a virtually unalterable aspect of my appearance. Hearing the ways in which I can improve my gait has, on numerous occasions, left me trapped in my own mind, wondering about whether or not the world notices that I walk slightly differently than is perceived as “typical.” However, I have regularly heard my self-consciousness dismissed as invalid, waved away by those who insist that “No one cares how you walk” and “The world does not revolve around you; get over it!”

For years, the contempt I heard towards my constant, gait-related worries was mirrored by the fact that I had never seen the self-consciousness I felt about my movement patterns portrayed in the media. Disability — and by extension, the psychological ramifications of living with it — is rarely addressed on television — relegated to off-screen innuendos and audience assumptions.

For the first 21 years of my life, I had never heard the words “cerebral palsy” uttered on a primetime television show, and I had certainly never viewed a portrayal of the often-detrimental consequences of being implicitly molded into appearing less conspicuous, more socially acceptable, and above all else, more able-bodied.  The overwhelming lack of disability representation on television is rife with a deleterious implication — that the experiences and stories of people with disabilities are invalid, unworthy of further discussion, and — as reflected by the reactions to my self-consciousness concerning my gait — completely dismissible.

Therefore, the moment I first watched my experiences as a person with cerebral palsy reflected back at me through the media was a powerful validation. Seeing an able-bodied character experience and begin to comprehend the struggles of my everyday life provoked a giddy happiness in me as I realized for the first time that my feelings towards my gait are wholly acceptable — and my experiences with disability are valid. My experiences matter enough to be revealed to able-bodied audiences. My experiences merit discussion. My experiences are shared by many; I am not alone in my feelings of self-consciousness towards my gait patterns.

In a single moment, as I watched Ray DiMeo feel desperate to appease a demanding physical therapist, as I watched him struggle to swing alternate arms as he walked, as I heard the echos of the therapist’s words rattle in his mind, I saw and heard myself.  A powerful message struck me deeply, resonating forcefully, with great clarity.

Your story is valuable.

Your feelings are valid.

You matter.

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Why I'm Studying to Be a Physical Therapist With Cerebral Palsy

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March is Cerebral Palsy Awareness Month, and I am really excited to get my thoughts out on this topic, as it is something I have wanted to expand on for a long time.

I am a 21-year-old college student who loves a good nap (I mean, who doesn’t?) and anything “Grey’s Anatomy.” I have a pretty average life, and at first glance you may not pick up on the fact that I have cerebral palsy. I have spastic hemiplegic CP on the left side of my body. Sometimes, CP seems to be the worst thing on Earth, if I am having a really off day when my muscles are super tight and even the slightest movement is rough. I don’t think people realize how taxing everyday activities, like typing for example, are on your body. But CP ever so graciously reminds me of this, and I need to find a new way to do things.

I could start to write some really sappy story about my life and different obstacles that have hindered me because of CP. A story that oozes awe-inspiring language and somehow makes you, the reader, feel bad for me. But I am not going to do that at all. It is time we change the narrative of people with disabilities, as if our stories are only ones that can be filled with sorrow. I don’t ever want people to pity me, because like I said already: I have a pretty average life. We all deal with at least one critical event at some point in our lives that shapes us as a person. CP has definitely shaped the way I view the world and everything around me, and it has done so since birth. I know my world as nothing different than what it is now, since CP has always been a part of me.

Cerebral palsy is the reason I am in college pursuing my passion of becoming a physical therapist. Oh, yeah: did I forget to mention that? My name is Jess Paciello. I am a 21-year-old college student. I happen to have cerebral palsy. And there is no way I would trade my circumstances for anything. CP has given me a unique view about life, how to treat others, and most importantly, how to be there for others.

Now I’ll let you in on a secret. As a kid, I hated my physical and occupational therapy sessions. Go figure, right? I should have loved them as a kid with the same level of passion that I do now. And I don’t mean to discount occupational therapists: they are amazing and I did consider it as a career! But for me personally, what really drew me into loving physical therapy was the biomechanics of movement, with walking being one of the main factors. I did not start walking until I was 3 years old. A delay in walking is one tell-tale sign of a CP diagnosis. The motor functions of those of us with CP are delayed, and I think I’ve always been more drawn to the gross motor tasks in my physical therapy sessions than the fine motor tasks of my OT ones.

I have been in OT and PT since I was 18 months old, and I “graduated” from having to go to therapies a while later at 18 years old. Now, it is all up to me. I am in charge of keeping my body running as smoothly as it can. I have basically been my own PT (without a degree yet!) my entire life. I have learned so much about my own body throughout my time as a patient. Now, it is time for me to give back and help others.

I have a long road ahead of me, but it will be no more difficult than anything I have already gone through. I cannot wait to work with children who need physical therapy. The reason why I disliked my therapies a child was because at the time, I felt disconnected. Every single one of my therapists throughout my lifetime were all incredibly knowledgeable, but I so desperately wanted someone to really get what I was going through. I wanted someone like me.

I hope I am making my family proud through my career choice and how I choose to view CP. But most importantly, I am making myself proud with my outlook on life. If one of my future patients and their families starts seeing the potential I know they have, then all of the schooling will 100 percent be worth it. If one of my future patients feels like they are not so alone when it feels like the world is working against them, then I know I did my job right.

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To My Parents, Who Accepted My Disability When Others Didn't

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I was born in a country where having a child with cerebral palsy was considered to be shameful. While I was growing up, I didn’t feel welcomed by the community where I lived. To the people of my town, I looked different than the rest of the kids in my neighborhood. Some children with disabilities were hidden in captivity in the backyards of their own houses. Others were treated as maids by their own families. The families hid these individuals to avoid dealing with an embarrassing situation. Seeing someone in a public place with a disability was uncommon. There were times when discrimination and lack of resources went against my parents’ effort to provide me a good quality of life.

Back in the 70s, Mom and Dad became parents at a young age, which was culturally acceptable. My parents’ financial situation was weak, but they did not let that stop them from doing their best for me. My parents started researching resources to get help for me. Shortly after I was born, they were able to obtain information about options available in Santo Domingo, the capital city of the Dominican Republic. Dad used to work as a cab driver, driving a car back and forth from Bani, where we lived, to Santo Domingo, so he was familiar with the city. Bani was a small town located toward the south of the D.R.

Starting from the time I was 6 months old, Dad, Mom and I drove to the only rehabilitation center that existed in the area at the time. My parents had to pay for the services. Dad was the sole wage earner of the family and Mom was a stay-at-home mom. Dad didn’t make a lot of money, but my parents managed to pay the medical bills and the costs of the medication and special shoes I needed. The following is a thank you letter to my parents for everything that they have done for me.

Dear Mom and Dad,

I can’t imagine how challenging it was for both of you to raise a child with cerebral palsy back in the Dominican Republic at a time when the country lacked resources and awareness about my condition. All that comes to my mind is gratitude. You struggled so hard with the few resources  available in order for me to have a good quality of life.

Sometimes I try to put myself in your shoes. I ask myself what I would have done differently. I probably would have done almost everything the same way. The only thing I would have done differently would be to talk openly as a family about the prejudices I have to deal with. I don’t blame you for not talking about that. It wasn’t your fault. As humans, sometimes we are scared to talk about painful situations. Parents are no exception. Therefore, in our case you avoid dealing with things that could cause me pain. Consequently, you denied what was wrong and pretended everything was fine.

I know you weren’t aware of how I felt while I was growing up, until you read it in my memoir, “I Made It.” When I first started writing about living with cerebral palsy, it was hard. The most painful part was to write about my physical appearance and the way I had been teased by other children, excluded from so many things, and pitied by strangers. At the same time, it was therapeutic writing about my turmoil. I was able to get in touch with myself, which allowed me to release my pain. Now I am feeling relief because you are aware of how I felt and were able to understand why I wrote my book.

Thank you for all your love and support.

Love,

Juana

Juana Ortiz’s book “I Made It” is available at www.juanamortiz.com and on Amazon.

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Why I Was Happy When My Son Was Diagnosed With Cerebral Palsy

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When my then 18-month-old son was diagnosed with spastic diplegia, a common form of cerebral palsy, I didn’t cry. I wasn’t the slightest bit upset. Actually, I was thrilled.

I had believed for months that Mason had cerebral palsy, but it felt like nobody else would acknowledge my concerns. At 9 months old, he could not roll over either way, could not crawl, kneel, or pull to stand, and had just started to sit, but often arched backwards and toppled over. His history is a litany of cerebral palsy signs. Mason is a twin, and he was born prematurely. He has high muscle tone throughout his body, gross and fine motor delays, and he favors the right side of his body. These clinical signs really should have been enough to diagnose CP, but doctors and therapists continued to tell us to “wait and see,” or they blamed prematurity for Mason’s delays.

At 14 months, Mason had an MRI, and it showed moderate cystic periventricular leukomalacia. The short explanation is that his brain was deprived of oxygen at some point during pregnancy, delivery, or his NICU stay, and this caused damage to his white brain matter. His lower lateral ventricles are larger than normal, where brain matter was so damaged that it essentially disintegrated, and the area filled with cerebral-spinal fluid. According to JAMA Neurology, PVL is the “most common cause of cerebral palsy in premature infants.” And yet our neurologist at the time would not diagnose cerebral palsy. In fact, he told me “almost all preemies” have PVL, and that it doesn’t necessarily “mean anything.” This, of course, is wholly incorrect. A 2009 study showed that between 4 and 25 percent of premature babies develop PVL, with best guess averages around 6.3 percent. Not remotely close to “almost all.” Did this doctor forget about Google? Or did he just expect I would blindly accept his words as the only answer?

We finally chose to move Mason’s care to a respected children’s hospital six hours from our home. We met first with a pediatric orthopedist, and less than two minutes after meeting Mason, he used the words “cerebral palsy.” It was August, and I was dripping with sweat after carrying Mason while running through the huge hospital’s many corridors, late as usual, searching for the right wing and floor. Mason was sick at the time and fairly miserable, but we made the trip anyway because we had waited four months for this appointment. He squirmed in my lap, whining. We were both overtired and hungry. But in that moment, when this young, nonchalant doctor, who is considered the very best in his field, confirmed that my sweet, gentle, middle child did have cerebral palsy — I felt only joy and relief.

I don’t remember the rest of what this doctor and I talked about, only that he said, “We can help you.” Finally, someone – a most important someone – acknowledged that I was right. I wasn’t an overly dramatic mother. I wasn’t a hypochondriac. I wasn’t imagining this. When Mason’s shoulder blades grind and crunch under my palms while I am holding him, I know why. When he tries to sit on the kiddie chair at library story time and falls off four, five, and six times, I know why. When he “forgets” about his left hand and holds it out awkwardly, balled up and hovering, I know why. When he wakes up at night with painful muscle spasms, I know why. When he began to have staring spells and complex partial seizures, I knew why. When he struggles to speak, trips over nothing, bumps into walls, holds his feet curled into C shapes, and needs to be carried after just a short walk — I know why.

I also need to say I was happy to get a cerebral palsy diagnosis because in the world of pediatric neuromuscular disorders, mild CP isn’t that scary. CP isn’t fatal, it isn’t progressive (though symptoms related to increasing spasticity can worsen as a child grows), and my son’s pain level has been relatively easy to manage. I hope to teach Mason to validate his own struggles and triumphs, but to also maintain perspective, and know that he is a damn lucky kid.

Mason has mild spastic diplegia, but cerebral palsy certainly doesn’t define him. He is obsessed with cars and trucks, and he loves his siblings, playing outside, and lollipops. Mason is a daredevil. He likes to climb the furniture, swing high and slide fast. If he hears music with a good beat, he has to dance his booty dance. His favorite foods are milk, fruit, and pizza. I have never seen a child who hugs as purposefully as Mason; he squeezes tight and makes us feel loved.

Still, cerebral palsy is a part of Mason we see each and every day. The quirks now are just a part of who Mason is, as inherent as his crystalline blue eyes. Before his diagnosis, his differences were red flags I couldn’t turn away from. I couldn’t sleep, and I spent every spare moment seeking answers. I’m not a doctor, a research assistant, a therapist, a diagnostician, or a service coordinator, but I have played all of those roles as the mother of a child with cerebral palsy. I know there are many mama bears still looking for answers. Keep fighting! Because when a mother knows in her gut and in her heart that something about her child is atypical, having the “why” means everything.

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Photo credit: Casey McClean

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How I'm Becoming Proactively Fearless With Cerebral Palsy

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For me this year, the focus of Cerebral Palsy Awareness Month is the importance of being “proactively fearless.” I define this as being active and especially fearless in my pursuit of understanding and resources, as well as being proactive and fearless in pain management, in facing my emotions and being transparent about my questions, issues, and needs.

As an adult living with CP, I often still struggle with making sense of what my body is doing and/or supposed to be doing as I continue to age. For most of my life, I set out to prove to the people around me and to the world that I am just as “normal” as everyone else. I expended so much energy trying to force my body to function as other able-bodied individuals around me, and in trying to dispel the stigma around being disabled. For instance, when I would go out and about with family or friends, I would push myself to walk faster, or walk past my distance limit and then go home to a private struggle with pain. When I needed help, I failed to articulate what I needed because of pride, but also because I didn’t even understand what I needed.

Since there is minimal research on aging with CP, growing up has been shadowed with confusion, silence, and frustration. When I was in high school and it was time to learn to learn to drive, I girded myself in pride and said, “well I’m just like everyone else, I can do this.” I failed to make my body operate like I wanted it to, which ended in a traumatic and shameful experience I kept quiet about for years. It took me a long time to heal from that and be able to tell myself it was OK. I don’t have to be like everyone else; I never needed to prove myself.

It wasn’t until I was boiling over with frustration and a peculiar type of denial and shame that I learned of a special driving school for people with disabilities. Growing up, my mother had always taught me to accept myself and love myself; however, after many years, I had to re-accept myself as a disabled individual. I had to accept that there are resources available to me and there is no shame in using them. Did I ever learn to drive? Not yet, but I am ever more proactive in my search for what is out there for me, and I don’t need to fear the feelings that rise up in me during my pursuit.

I spent so much time proving I was “normal” that I was rejecting myself as I was. I was afraid because I felt like I would be going backward, backward into the stigma of being seen as helpless or in constant need. The truth of the matter is that both abled and disabled people are in constant need. We need and will always need help, support, resources, etc. I had to tell myself no more judgment. I had to say to myself (and the world), yes I have CP and it’s OK. I had to say yes, I can do this and that, but not be afraid to say I am tired today and I can’t today. I had to embrace CP with love, though that doesn’t mean I have to like it.

There are days when I am exhausted, there are days when I am in a lot of pain , there are days when my legs beg me, “no, please don’t make me walk,” and there are days when I am angry at my body. As an adult I still struggle with making sense of all that. When I looked for a job after college, I felt like a failure because I couldn’t work at just any job. As people who are disabled, sometimes we need accommodations, and it is our right to ask for them and be granted them as long as they are reasonable. However, how are we supposed to ask for them if we don’t even know what we need?

I struggled for a long time not knowing what I needed, and sometimes I still do. Sometimes my needs change. Sometimes I may feel like I know what I need and someone might say, “Oh no, you don’t need that.” How do I as a person with agency and who knows my body better than anyone else reconcile that? How do I balance what I think is best for me and what someone else, a physician for example, says may be best for me?

This is where being proactively fearless comes in. In moments like this, I should ask for a second opinion, or third if need be. I need to say what I feel or ask questions when I have them, even if I am talking in circles and not making any sense. I need to be fearless, listen to my body and never give up on my pursuit of what I need. That’s what this month is about for me. It’s about being aware of my heart and body, expressing and sharing what I know and don’t know, asking questions, and acquiring knowledge.

It’s about saying look,I am disabled, and yeah, this thing has a medical definition, but that definition is not a rigid container around me. Sometimes my body might do something that I don’t know it’s supposed to do. As I age with CP, are there things I need to be aware of? I must probe that. Your body might do something that isn’t described in the research or literature; what then? Be proactively fearless. Proactively fearless means I don’t fear you, CP, nor do I fear you, body, and I don’t fear you, research. I will listen, I will probe, I will manage, I will take care of myself the best I can and I will love myself even when I have days and moments of not liking myself.

Sometimes people say things like “You don’t look disabled,” and sometimes people notice and say things like, “Why do you walk like that? Why are your hands like that? What’s wrong with you?” Hearing both of those things is a struggle, yet being fearlessly proactive or proactively fearless, I am constantly learning and steadily being. I am learning to say, “Hey look, I have this and it’s OK.” “Sometimes I trip and fall out of nowhere; my body does that, it’s fine.” Or “I walk really slowly, so please be patient.” Or “Can you help me with this?” Sometimes it’s saying disability doesn’t have a look. It’s just a title. It’s just a flexible, gooey definition. But this is what I have and I am here.

Sometimes proactively fearless is saying, not just verbally but in our daily act of living, I may not be wearing orthotic braces or in a wheelchair, but I am still disabled. Or I am in a wheelchair, but I am still beautiful and talented and abled. Sometimes it’s saying I can’t do that and it’s OK, or I can do that but I need to do it in this way. I am here and searching. I am lost and found. I’m not 6 anymore and my mom isn’t here, so I must seek people who can back me up. Proactively fearless is taking a mat Pilates class at NYU’s Initiative for Women With Disabilities. I don’t go to physical therapy anymore, so I’m going to see what’s out there. Sometimes, it’s about saying I hate my body today, can you give me the number to a social worker or counselor? That doctor didn’t help, do you know another one who may be more helpful? It’s about saying I have this but it doesn’t have me, and even when it hurts I’m here.

Cerebral Palsy Awareness Month and every day is about being proactively fearless in love. It’s about standing up for myself and advocating for myself as well as others. It’s about saying I’m hurting and healing at once, I am staying the same and changing at once. I am not here to serve as your inspiration, but I am here to be me, and I have a purpose and a destiny.

We are the same and different at once. Throughout my life, I’m going to meet someone else with a disability and hear their story. And I’m going to tell my story, over and over, everywhere and always.

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Thinkstock photo by Sara Berdon.

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