I met a man last year who photographs birds. I was new to dating after my 22-year-old marriage ended, and I very much wanted to be open to new experience. Despite having absolutely no knowledge or even interest in birds or birding or bird photography, I found his photos mesmerizing. His passion for birds seemed as vast as the patience it took to really capture them through photography, and I only became aware of that patience when I went out walking with him in an Orange County park last year, one of many that dot the otherwise drab, cookie-cutter landscape. Within moments my friend pointed out a startlingly blue bird on a branch in a nondescript tree ahead of us and a small brown bird at the base of the trunk. He looked up and scanned the sky.

“There’s a red-tailed hawk”, he said and pointed to a bird soaring high above us. We walked over and sat on a curb at the edge of the park and faced a dirt gulley that ran along the road. “See the Burrowing Owls?” he asked and raised his camera with the very long lens. Across the street, blending into the brown dirt were three small owls, about eight inches high, staring at us, swiveling their heads, looking up into the sky and then darting down into a hole. I might as well have been dropping down into a hole, a proverbial Alice, into a world that I had absolutely no awareness of but that had existed, evidently, always.

This is a post about awareness. “You’ll be writing your blog from your unique standpoint of bluntness and anger,” an organizer said in a conference call we had recently about this upcoming project. “The theme is awareness during Cerebral Palsy Awareness Month.” I winced, to tell you the truth. As a writer who happens to also be the mother of a young adult with severe disabilities, including refractory epilepsy and cerebral palsy, I struggle daily with issues of identity. I am aware, nearly constantly, of my daughter’s and my interdependence, of how our very identities can merge and separate and how that movement defines my writing. I can be angry and am very much blunt as I strive to strip my writing of sentimentality and cliché, to always honor my own truth, the truth and awareness of how disability has affected both myself and my daughter who has no voice, other than mine, to tell her own story. At the same time, I am exquisitely aware that despite her disabilities, she has her own story and integrity, that it’s an honor and a privilege to not only care for her but to tell her story straight and to help ensure that she is treated with dignity and able to live a life of beauty.

“Oh God, I hate these “awareness” months,” I think I replied. The people on the conference call laughed at this corroboration of my inclination toward anger and irritability at worst and dark humor at best. Our family has navigated stares and silence in public for over two decades with an occasional pitying glance or clichéd remark about how “special” we are to do what we do, or how “God only gives us what we can handle.” People, however well-meaning, don’t realize that I have spent countless hours over the past twenty years fighting for the right for my daughter to receive an education, health insurance, healthcare and even the right to exist. I’m not sure why, but we also live in a culture that sometimes even defines our humanity by our ability to speak. My daughter is non-verbal and thus often invisible, even to members of my own family and close friends. I am irritated that during these special marked months, I am somehow called upon to step up this awareness activity more than I already do. Why can’t every month be one where everyone is aware that the world is made up of people of vastly different abilities and that our awareness should extend to even those who might not be able to express themselves in conventional ways?  Why must we mark them with specific monikers to get people’s attention in a certain time period? How can awareness to what is all around us be consigned to a time period?

I notice birds now even in my city neighborhood, darting from bush to tree in the alley outside my kitchen window, alighting on the palm tree that reaches up into the southern California blue sky and on the wires that crisscross my backyard. In an article in The Paris Review, Megan Mayhew Bergman wrote, “Birding is a heightened, finely tuned way of seeing.” I am aware that birds and owls and small creatures are, quite literally, everywhere around me and have always been everywhere around me. I am still seeing the man who brought this awareness to me, have begun to compile what birders and bird photographers call a life list. You see where I’m going.

I feel slightly embarrassed these days when I notice a bird in the bush outside of the grocery store or see a hawk swoop down out of the sky on the freeway. While I am conscious of this new-found sensitivity, I know that it isn’t so much my observation that brings them into being but that they have been there all along. Awareness of disability, of those who are “different,” who are, perhaps, more colorful or might otherwise blend into the landscape should be an ongoing exercise, something heightened and finely tuned. People like my daughter, like your son or your cousin or your neighbor or your co-worker are all around you. They are alive and intricately woven into the world by necessity. Be aware. Observe. See them.

Elizabeth Aquino
Blog: a moon, worn as if it had been a shell

Max helped his little brother lift a wheeled toy into the kitchen the other day. There’s a piece of wood at the entryway that Ben can’t navigate on his own, and I watched as Max lent him a hand. Seemingly, this is no big deal except Max has cerebral palsy and fine-motor skill challenges, and it took a fair amount of effort for him to grasp the wood handle and lift the toy up.

As usual, I was aware of his abilities and proud. Of course I am: I’m Max’s mom, the head of his cheerleading club and his faithful publicist. Sadly, though, many people out there are not aware of the abilities of people with cerebral palsy. Given that it’s Cerebral Palsy Awareness Month, I am here to make you…aware.

Until I had a child with CP, I wasn’t aware of the wide range of types it encompasses. Some people with CP move by walking; some use wheelchairs, walkers and other mobility devices. Some people with CP have minor weaknesses in one limb; some have weakness or spasticity in all of them. Some people with CP have cognitive impairment; some are as brilliant as they come.

Max has spastic four-quad CP. He walks, with support from leg braces. He has issues using his hands and with speech. He has intellectual disability, and while he’s plenty bright learning does not always come easily. In other words, like any human out there, he has his challenges—and like any human out there, he has his strengths and talents. To name a few: He’s got an amazing memory and sense of direction (Max is as trustworthy as our car’s navigator); he’s got a high emotional IQ (“Are you OK?” is one of his favorite phrases); and he’s amazingly personable and charming. Also: He’s got good hair.

People notice how cute he is. But otherwise, I’ve found that people who don’t know Max tend to only see the cerebral palsy instead of seeing the whole of who he is. They are acutely aware of his disability, and because that can make people uncomfortable, they aren’t sure what to say to him or how to act around him. “How old is he?” people ask as Max is standing right there next to me. Over the years, when I’ve told people that Max has cerebral palsy, the responses I’ve gotten have ranged from “Awwww” [head cocked to one side, looking sad] to “I’m sorry.”

“Oh, don’t be sorry,” I’ll chirp. “He is amazing.” And he is. (See: “Max’s head cheerleader and publicist.”)There is a real lack of awareness out there that children and adults with cerebral palsy are fully-formed children and adults who share the basic drives we all have: to connect with others, to explore, to learn, to have fun, to live a good life and to regularly eat their body weight in chocolate ice-cream. (Oh, wait, that’s just Max.) This awareness is impossible to achieve if people don’t get that a disability is just one part of who a person is—or, worse, they pity those who are disabled.
A few years ago, I spoke on a panel with blogger Katinka Neuhof, who writes at The Fabulous Adventures of a Four-Legged Woman. She told the story of rolling down a New York City street in a wheelchair, with her son by her side, when a passerby stopped and announced, “I’m going to pray for you.” I’ve heard similar stories from parents of children with CP. On occasion, strangers have approached me when I’ve been out with Max and said, “God bless you,” as if Max is a tragedy and I am a saint for being his mom.

True awareness about cerebral palsy starts with two key things: 1) People being aware of their misconceptions and preset ideas about what it means to have a disability; and 2) People viewing, approaching and treating those with CP as if they were any other people. Of course, accommodations may be necessary to level the playing field—but again, it all starts with the understanding and acceptance that children and adults with CP are not defective people but just plain old p-e-o-p-l-e.

Actually, come to think of it, I don’t want you to be aware of my child’s cerebral palsy. Maybe we should rename this Cerebral Palsy Non-Awareness Month?! Should you meet Max, I’d like you to talk directly to him, not to me. Ask him questions, not me. There’s no need to treat him with kid gloves or any elevated level of politeness.

Find out what his interests are, what his favorite school subjects are, what he’s interested in doing when he grows up. Joke around with him. Tease him, even. You know: Treat him like any teen, anywhere.

That would be true awareness.

We’re thrilled to announce a new partnership that will bring CPF’s resources in front of The Mighty‘s wide-reaching readership. CPF will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to helping people with cerebral palsy in their lives. With this partnership, we’ll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

I want to not only share a wonderful article in this month’s Teen Vogue, written by Dalila Castillo, the President of our Young Professional’s Committee, but also share my thoughts about it. In the piece, Dalila talks about her feelings of “trying to feel normal” when growing up with cerebral palsy.

As head of our Foundation, I’m fortunate to have opportunities to speak with many individuals and I’m constantly made aware of the complex challenges faced by people with cerebral palsy and disabilities.

It would be hard to overstate the depth of what individuals must feel when trying to navigate their diverse challenges. Does one, as Dalila discusses, wear orthotics and take time for the therapies needed to improve physical performance — or does one instead do all they can to try to conform with the norm?

Does a parent, faced with getting their child a good education, constantly fight a system if it is providing inadequate resources, or do they try to work with a teacher to maximize the positive impact of whatever services are provided?

Does an individual stay optimistic about love and friendship, despite disappointments and difficulties, which are — although faced by everyone — so often magnified when faced by someone with a disability? Or does a person retreat a bit, and find a different emotional space in which they will be more comfortable?

Every life, with or without disabilities, is marked by the milestones when one decides to pull back against long odds or fight them, when one chooses to say “yes” or “no.” Every individual faces daily decisions which will dramatically and inexorably change his or her life. We are often not even aware of those choices, but they do indeed define our paths forward.

However, even if these moments are faced by everyone, I am often told that for a person with disabilities, the moments are tougher, the challenges more pronounced, and the stakes greater. And I am also told that because of this, one’s achievements can also take on additional richness: that one also learns to cultivate that most wonderful of emotions: appreciation.

And so, having Dalila open up and share these thoughts not just for teens with disabilities, but for their friends, acquaintances, and the world… wow: what a lovely moment.

I hope you appreciate Dalila’s take on “normalcy” as much as we do. We love her perspectives. And we’d also like to add our word for how she’s turned out: extraordinary!

BY RICHARD ELLENSON, CEO

“You showed me that anything is possible” was one reaction from a Brooklyn College Academy high school student after listening to a panel on disabilities hosted by the Young Professionals Committee (YPC) for the Cerebral Palsy Foundation (CPF) last week. The panel, called Disability in the City, specifically strove to help the Brooklyn College Academy students better understand issues and obstacles related to accessibility in New York City and generally, learn about how each of the panelists live normal lives despite their disabilities.

The panel was made up of four adults with disabilities – three living with varying degrees of Cerebral Palsy (CP), and one with Osteogenesis Imperfecta, a genetic condition causing brittle bones and bone fractures with little or no apparent cause. Each of the panelists shared their personal experiences so that the students could feel what is what like to be in their shoes.

As the Founder and Co-Chair of the YPC, I lead the conversation with a brief description of statistics on New York City’s methods of accessible transportation. Research shows only 85 of 468 total NYC subway stations are considered wheelchair accessible by the Metropolitan Transportation Authority (MTA) – which means that, theoretically, wheelchair users can access less than 20% of the city’s subway stations. Realistically, the number of accessible subway stations at any given time is probably even lower than 85 as mechanical issues often cause subway elevators to breakdown without notice. We find a similar reality within the NYC bus system – on paper, all NYC buses can accommodate wheelchair passengers, but in daily life, many wheelchair users encounter frequent obstacles to riding the bus around the city – either the rush hour crowd does not want to move aside to let the wheelchair on the bus before them, forcing them to wait around for the next one in lieu of fighting the crowd, or, the bus is too crowded for a chair to board, or, the bus driver claims they cannot operate the bus ramp. These inconveniences can add hours of unfair wait time for wheelchair users navigating NYC via public transit.

I also briefly discussed Title I of the American With Disabilities Act that allows for persons with disabilities reasonable accommodations to their job or work environment. I recently had trouble with getting to and from my office and unfortunately, had to fight to receive a minor accommodation. I shared my story in hopes of teaching the students the value of self-advocacy and speaking up for yourself.

Kyle Khachadurian, friend of the YPC, voiced the importance of consideration when it came to traveling in NYC. As someone with mild CP, he shared that its physically taxing for him to stand for a long subway ride, but many times, other riders do not offer him their seat. It probably would not hurt for most people to look up from their smartphone to see if another rider may benefit from taking their seat. Kyle also shared that in his case, he had it “pretty good” until after college, because that is when he realized how difficult it could be to get around on public transportation sometimes.

Jessica De La Rosa, friend of the YPC and this year’s reigning Ms. Wheelchair New York, reminded us that disabilities do not equate to inabilities. Jessica and most of her family members live with either Osteogenesis Imperfecta or another type of severe physical disability, but she does not seem to perceive that as an insurmountable circumstance. She shared with us her positive outlook, her drive, and determination to live life to the fullest. As Ms. Wheelchair New York, she is an advocate for people with disabilities and seeks to raise awareness about inclusion in school systems. She often takes care of her young niece and nephews who are also in wheelchairs because of their Muscular Dystrophy. Jessica shared with us that often times she sees her niece and nephews being left out of field trips and social activities with their peers without good reason. She went on to say that when its time for a field trip, the school will almost always initially state that her niece and nephews cannot participate because either, there is no space on the bus, the destination is not accessible, or there is not enough chaperones. Jessica will do everything she can to get them on the trip because, she’s found, that most of the time, these excuses are either untrue or easily solvable. Jessica hopes that advocacy work and inclusion initiatives will allow all children to be treated equally in schools so that children with disabilities feel good about their place in the classroom.

Jessica also shared how inconvenient it can be to get around for her and her wheelchair bound family members. She has experienced being stuck on a subway platform for hours because the elevator stopped working right before she got there, ridiculously long waits for both Access-A-Ride, the city’s paratransit service, and for an accessible NYC taxicab.

Last but certainly not least, Andrew Pilkington, filmmaker and friend of the YPC, has CP in a way that makes it difficult for him to speak, or fully control his arms and leg movements. But, he lives his life with a smile on his face and is following his dream of filmmaking despite any physical obstacles. He taught himself how to type on a keyboard with his nose, and he uses his right foot to manipulate the computer mouse. He wrote and directed 2 feature films (so far) and has no signs of slowing down or stopping.

Andrew shared that people often assume that because he is in a wheelchair and has difficult with speech, he must also have a mental disability. People sometimes speak to Andrew in certain tones or want to make decisions for him. Andrew also told the students that getting around in New York City can be tricky because its difficult to catch an accessible cab, and he can’t always rely on the Access-A-Ride service. He pointed out that accessible cabs often create uncomfortable situations for him because there is no accessible credit card machine near his chair. So if Andrew is traveling in an accessible cab alone, he has to trust the taxi driver to take his card and swipe it for him.

The students of Brooklyn College Academy heard our stories and said that we changed their perspective. Each of the 20 students in the room shared a statement after the panel and their comments were full of words like “inspiring”, “impactful”, and “thank you”. It seems that the students learned to see disabled people like all people. They thanked us because hearing from us made them feel that they too could conquer their own issues and obstacles.

I, for one, would like to thank the students for taking the time to listen and get to know us. The disabled community would greatly benefit from more inclusion and understanding. And I like to think that with this workshop, we took a tiny step toward that goal.