A New Direction: Discovering My Cerebral Palsy

Guest blog post by Dalila Castillo. Originally appeared as a featured story on the Cerebral Palsy International Research Foundation’s website on July 23, 2013. 

Have you ever felt different? If you’ve lived at least one day as an adolescent, chances are, the answer is yes. I am no exception, as my physical weakness provides a constant reminder of what makes me different. I’ve been asked, “why do you walk like that?” countless times and I didn’t have a solid answer up until recently. I never fully understood why, and was ashamed of the fact that, I couldn’t complete certain tasks like everyone else could. I’ve always known that I have a condition that creates challenges for me. I’m accustomed to the discomfort — the aches, pains and muscle stiffness that came along with the condition and I constantly tried to overcompensate for my shortcomings. What makes all of this especially unique is that I grew up not knowing exactly what caused me to walk “like that.”

I was born three and a half months early due to a premature membrane rupture and until a couple of months ago, all I knew was there were complications during my birth that caused my condition. Last October, after graduating from law school and sitting for the bar exam, I finally mustered up the courage to search for the details. To start, I requested my medical records from the Hospital of Special Surgery, where I had surgery and went to physical therapy as a child. I will never forget the feeling of anticipation and anxiety I had when the thick manila envelope finally arrived and was in my hands. Opening the envelope evoked feelings not unlike those I had when I opened my college and law school admission envelopes, only this time, instead of telling me where I was going, somewhere in these 150 pages of medical history, I would learn where I had been.

There it was. In the center of the first page in black and white, Diagnosis: Cerebral Palsy (CP). I have CP. My first reaction was bittersweet; a medley of excitement and relief. I was excited to be closer to understanding this part of who I am. I am ashamed to admit that I was also taken aback because I had fallen victim to the common misconception that people with CP were low functioning and constrained to wheelchairs. Recognizing my ignorance, I grabbed a pen and legal pad and began reading the file, taking notes and “googling” medical terms like my life depended on it. I now know that CP affects people on a wide spectrum, just like autism and any other brain disorder. I myself have mild spastic diplegia, which means that I am affected in my lower extremities and endure muscle stiffness and involuntary leg spasms. I also know that CP results from a brain injury during either a baby’s development in the womb, during the birthing process or during infancy and it may not be perceptible until months after birth. An undetected infection during the mother’s pregnancy, severe oxygen deprivation during the baby’s delivery, low birth weight or any brain damage occurring after the baby’s birth are some causes of brain injuries that can lead to CP.

You might be wondering how is it that I didn’t know of my diagnosis until age twenty-five. My parents were both aware that I was born with CP, but they chose not to share that specific information with me. Since I have a minor case, they felt that I did not need to know. So instead, whenever I would fall down or otherwise feel like an outlier, my mother would remind me that every person has a struggle, an invisible scar, and this was mine. She would tell me that my condition actually made me just like everyone else.

Flipping through the pages of my medical record, I learned more about my past: things like, I weighed approximately 1 pound 15 ounces at birth and remained in neonatal intensive care for three months where I was supported with oxygen through a nasal tube. As well as other information such as, my mother first noticed my disability when I was about ten months old. I was unable to crawl on my hands and knees and could only crawl commando style (using my forearms to drag my body across the floor). She also saw minor delays in my motor and cognitive skills; for example, I didn’t say my first word until around two years old and when I sat in a chair, I tended to tilt to one side and could not feed or dress myself properly.

But, I of course have little recollection of any of those early developmental struggles.  I do, however, remember having to go to the doctor frequently and having surgery on both of my Achilles Tendons when I was five years old to loosen the muscles and allow me to walk with a flatter foot. After surgery, I had to face the difficult task of building up enough strength to use my legs and then, once I did, having to walk with a walker. I also remember feeling confused that I had to go through so much just to be able to move one foot in front of the other.

As a child, I constantly fell down and scraped my knees. After having surgery to lengthen my muscles, I attended weekly physical therapy sessions, had to wear orthotics in my shoes, leg braces at night and had to do heel cords stretches every day. My mobility increased tremendously thanks to all of these efforts, but, despite my progress, there is no cure for CP so I was still weaker than my classmates. I was teased and constantly felt left out and out of place, because I couldn’t participate in “normal” kid activities from skipping around in gym class to roller-blading with all of my cousins on a Sunday afternoon. The only way I can think to explain is I felt as if I did not control my legs, but instead that they controlled me. I was constantly self-conscious about what I couldn’t do gracefully or at all because of my condition.

When I was a teenager, I realized that I wasn’t gaining anything by using the weakness in my legs as an excuse, and it was then that I decided to try to run track and cross country my freshman year of high school. I pushed myself and my body to the absolute limit and in doing so, I learned that even if I can’t complete some tasks like most people, doing them in my modified form is so much better than not doing them at all, as long as I know I can do them without getting hurt.

Now as a young adult, I know how important it is to listen to my body. So to make things a bit easier on myself, I make it a priority to stretch and exercise, especially my leg muscles. But like anyone else, I have good days and bad days. I can get to point A to point B on my own, and I know that I am extremely lucky for that, but I still have to plan how I will get from one place to another with the least amount of discomfort. In other words, I have to choose my shoes carefully, as well as consider how much I will carry with me and how far I have to go before I can leave (whether it be by foot, car or public transportation). I’m not exactly sure how CP will affect me as my bones and muscles age, but I am confident that I will be able to handle it and adjust, just as I have in the past.

I’ve always perceived my condition as both a blessing and a burden. A burden because there are times when I imagine certain tasks and social situations would be much easier if I could just be “normal.” But when I really reflect on it all, I see that it is also a blessing because if I didn’t have CP and didn’t have to overcome constant tests of my physical and emotional strength, I wouldn’t be the ambitious, empathetic person who is writing this article today.

I say all of this to say: we are all different. We all have our struggles and can choose how to perceive them. As I mentioned earlier, learning that I had CP provided a sense of relief because I no longer feel in isolation, alone, or like I have a secret to hide; now, I am a part of the CP community. Thanks to the immense amount of love and support I’ve received from my family and friends after sharing my story with them, I’ve learned that my CP can be a positive impetus. I have chosen to view my recent discovery of the diagnosis as an opportunity –- an opportunity to share my story, to let people know what it means to have CP, and ultimately, to make an impact and empower others. In an effort to seize this opportunity, I connected with the Cerebral Palsy International Research Foundation (CPIRF) via my Facebook and LinkedIn page and I am pleased and excited to help educate and inform younger generations about CP and CPIRF as the founding Chairperson of the Young Professional Committee (YPC). The YPC will be raising awareness and funds for CPIRF’s research programs through fun social events. I have begun recruiting friends and volunteers for an inaugural event in New York City. If you are interested in learning more about getting involved with the YPC, contact me directly at dalilacastillo103@gmail.com or through the CPIRF office by calling (609)452-1200. Also, please visit www.cpirf.org for the latest information regarding CPIRF’s research investments and progress.

Dalila is a corporate attorney at Burgher Gray Haile & Jaffe LLP. She’s from Ridgefield, NJ and currently lives on the Upper East Side of Manhattan.

WORLD CP DAY 2014 IDEAS ANNOUNCED

FOR IMMEDIATE RELEASE                                                                      CONTACT:  

January 20, 2014                                                                Kaelan Richards: 202-973-7175

                                                                                                                 krichards@ucp.org

$50,000 prize pool for anyone who can bring the ideas to life!

More than 400 ideas submitted through “Change My World in 1 Minute” contest to help people with disabilities around the world

Washington, DC (January 20, 2014) – United Cerebral Palsy (UCP) and global partners have announced the three shortlisted ideas for the “Change My World in 1 Minute” contest for World Cerebral Palsy Day.

Established in 2012, World Cerebral Palsy Day is an international day of awareness about cerebral palsy through change and innovation that can make a difference for people living with disabilities. The “Change My World in 1 Minute” contest asks people from around the world to submit ideas that they think could change the world for someone with a disability. The ideas, which must address issues of mobility, independence, accessibility, communication or social connections, are then reviewed by two international panels of individuals with disabilities, parents of children with disabilities and experts in a variety of medical and engineering fields.

Inventors, designers and makers are now invited to bring these three ideas to life, and to compete for a $50,000 prize pool. The ideas are:

Don’t Spill a Drop

A completely spill-proof cup for teens and adults who have limited hand dexterity and strength. Must be component-based, customizable, low cost and look super-cool!

Designer Walker

A high-tech mobility walker for teens and adults with disabilities. Innovative design and fashion-forward style are key. It also must have all the strength and functionality of a regular walker, while being light weight and affordable. Extra points if it’s customizable!

Design4CP

A global collaborative enterprise to design and create products, services and technologies for people with cerebral palsy, plus an innovation plan to bring them to market.  

Of the more than 400 ideas submitted to the “Change My World in 1 Minute” contest, these three were judged to be the most innovative, helpful and feasible. Anyone can compete to bring these ideas to life, but entries MUST be submitted by June 20, 2014. The winners will be announced on July 21, 2014.

Last year’s winners, a team from the University of Virginia, created a solar-powered wheelchair, which they shipped directly to the man who submitted the original idea—in Istanbul, Turkey!

“Attention hackers, makers, designers, inventors—anyone with a passion for innovation and helping people! This year’s World Cerebral Palsy Day ideas have been finalized, and they represent a wide variety of innovative and aesthetic concepts that will truly help to change the world for someone with a disability. We challenge the world to bring these ideas to life,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “This is an extraordinary opportunity to combine creativity, design and technology for a great cause, and we can’t wait to see the results.” 

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About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

 

The Arc and UCP React to Offensive Language to People with Disabilities in The Wolf of Wall Street

For Immediate Release                                                  Contact (The Arc): Kristen McKiernan

January 13, 2014                                                                                                      202-534-3712

Contact (UCP): Kaelan Richards

                                      (202) 973-7175

The Arc and UCP React to Offensive Language to People with Disabilities in The Wolf of Wall Street

Washington, DC – The Arc and United Cerebral Palsy released the following statement in response to the use of the r-word and the offensive depiction of cerebral palsy in the new film The Wolf of Wall Street. 

“The Wolf of Wall Street is getting a lot of attention for how it offends audiences on many levels, but one aspect that hasn’t been discussed is its use of the r-word and its unacceptable mockery of people with cerebral palsy.  Hollywood just doesn’t seem to get it.  More than five years after people with disabilities protested at theaters across the country against Tropic Thunder, a film which included a highly offensive portrayal of people with intellectual disabilities, the industry is still using language and jokes that hurt audience members and don’t add any value to the artistic intent or point the film is trying to make,” said Peter Berns, CEO of The Arc. “Among moviegoers who have paid to see The Wolf of Wall Street in recent weeks are people with disabilities, their parents, siblings, and friends.  It’s time for Hollywood to wake up and see that their customers deserve better.”

“The Wolf of Wall Street’s gratuitous use of an offensive term for people with disabilities, as well as its depiction of cerebral palsy, is outrageous. For more than 60 years, UCP has been working to ensure that people with cerebral palsy and other disabilities can live their lives without limits—including equality, inclusion and respect in our society—but it is very clear that our fight is far from over,” said Stephen Bennett, President and CEO of UCP. “While we understand that the film’s content is deliberately distasteful and excessive, it does not excuse it. It is astonishing that the film’s producers, director and actors deemed this kind of language and portrayal to be acceptable—they can do better, and we urge them to.”

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP works to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time.

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