Dear Spina Bifida, remember me? It’s John the infant you tried to kill 26 years ago.
Well let me give you a brief update, first and foremost, I’M NOT DEAD YET!
You did your best trying to make sure I never left the hospital or if I did leave, I’d be a vegetable in a bed the rest of my life, well joke’s on you buddy, I’ve written numerous articles, blogs and even a book about how you tried to destroy my life prematurely.
Let me say this one thing, YOU CAN’T TOUCH ME!
If I’ve said it once I’ve said it 26 times, PACK YOUR BAGS AND MOVE OUT!
Your eviction notice is taped to your door and you need to leave now.
This space has been overcrowded by your crap for 26 years and I say good day to you good sir.
You’re no longer welcome here, and if you choose to stay, I will just continue the fight to survive.
So you now have 2 options: LEAVE PEACEFULLY or prepare to step back in the ring for the next round.
tap tap tap* Those are all the sounds I hear that help me escape from my lack of mobility on the left side of my body due to a little annoying tenant I have living in my brain called “Spastic Cerebral Palsy”.
For the past 24 years, Cerebral Palsy has made my life an adventure if you ask me from being a tiny 2 lbs. 3 oz. newborn fighting for her life in the ICU as doctors doubted that I would make it past 24 hours to learning how to write my ABC’s on an old fashioned typewriter for occupational therapy for an hour each day as I would whine and cry
As my little swan finger would touch the big giant keyboard and my fingers would become sore, I would often wonder what my purpose in life was and why I was made to be different.
Little did I know that someday the keyboard would lead me to telling my story with Cerebral Palsy and how I stomp on the obstacles that come my way each and every day whether it’s dealing with society and what their awareness is about C.P.
Or whether it’s forgetting to put my brakes on my wheelchair when getting out the car and your wheelchair decides to go with the wind, and you find yourself running down the hill in your caregivers’ arms.
Truth be told; Life’s an adventure in itself you get taught many lessons along the way, you meet many antagonists and many protagonists that make your life great.
The main thing I have learned throughout my life with cerebral palsy is that no obstacle is too big or too small for me to stomp on. So no matter what the obstacles are in your life you have to keep going in order to follow your dreams in your passion.
We all have reached a point in our lives that we have to do certain things that we don’t want to do in order for us to reach the finish line but we have to take it one day at a time and be the tortoise of our lives because if we don’t then we will never be successful at the things we do and show our abilities and stomping on the stigmas that we face every day in a society as people with Cerebral Palsy And that’s what writing has done for me it has given me an outlet to cope with society in the stigmas all around and to think it all started form an obstacle of me not wanting to learn my ABC’S led me to finding my passion and finding my own way to advocate and be the voice for those who can’t.
When I first became paralyzed from a spinal injury, I moved into my parent’s house. They had created a really nice, one-bedroom basement apartment for me. From the French windows in the living room you see it had an amazing view of the woods behind the house and in the far distance, there was a farm with a couple of horses running around. It was a nice little paradise. One day, I decided to get some fresh air. The basement had its own entryway so I opened the door, went out, and shut the door behind me. The door had one of those locks that you can open from the inside even though it was actually locked on the outside. So after I sat and watched the horses run around, the squirrels jumping from tree to tree, I went to get back in the house but the door was locked and there was nobody home! I thought “Fuck! Now what do I do!” There were stairs that led to a wooden deck where my dad loved to bbq and entertain. So I transferred to these stairs and pushed myself up them. Then I crawled across the deck and around to the front to see if I could get into the front door. It was locked. So I crawled back to the steps on the front of this deck and waited for a neighbor or someone from my family to show up.
45 minutes went by and I saw a young girl, maybe a teenager, walking by and I screamed out to her. She came up to me and I explained what had happened, asking if she could go to one of the neighbors’ houses and call my father. She looked at me blankly and said “Are you disabled? You don’t look like it.” In the moment I said yes and thank you without really thinking about it. While I was waiting for her to get a neighbor I thought to myself “what does that mean? What did she mean I do not look disabled? What does a person with a disability look like?” That was first time I had the realization that unless there is a visual cue like wheelchair or cane people don’t always realize you live with a disability.
Invisible Disability is a big issue in the disability community. A person that lives with a disability that nobody can see it can include any kind of disease or mental condition that makes it difficult for that person to live as independently as other able-bodied people around them. After the Parkland shooting this year, I thought how as a community we are unable to recognize people with invisible disabilities until it is too late. Three months later, the Santa Fe shooting happened. Then this morning, I learned about Anthony Bourdain’s suicide. I was not a die hard fan but always appreciated that he travelled the world, explored cuisines that were not familiar, and had life that just seemed like it was a lot of fun. Even so, he lived with a disability that nobody ever noticed, perhaps including himself. When you are told a person lives with a disability, the first thing image that will most likely pop into your head is a person in a wheelchair. In the 2002 census 96% of people have an illness live with one that is invisible and 73% of people with severe disabilities do not use assistive devices like a wheelchair. So how can you tell if a person is living with a disability? Sometimes you cannot.
How can we all learn that there is no real “look” to living with a disability? People are uncomfortable talking about disability. It’s one thing when a person like myself has a spinal injury and is in wheelchair but when a person suffers from a disability that is mental or emotional it can be ugly and hard to watch so we just push it to the side, until we are forced to look at it and again. And because of this there is a huge lack of awareness and education that leads us all to have a huge misconception of what disability is and what it could look like. Due to these misconceptions we either make the wrong choices or miss something that was right in front of us.
How do we get rid of misconceptions?
Exploring how we actually treat people that live with disability, mental and physical, would be the first step. How do people react when they see a person with a disability? Words like weak, different, and shame are so often associated with it. When I fell and sustained a spinal injury I also sustained a traumatic brain injury (TBI). When you live with TBI people cannot tell you have it by looking at you. The effects of having brain damage can lead a person to act differently than we are used to. Perhaps they say things that other people will interpret as “mean” or “rude”. I was lucky because I still have control of what I say but it affected my ability to read and write. I remember one day sitting at table of friends and them making fun of a common friend because they did not read. It had not occurred to them for a second that I did not read either because I couldn’t. At the time I was new to living with a disability and instead of saying “I don’t read because I can’t. Do you want to laugh to make fun of me?” I was embarrassed and I sat quietly without saying a word. Maybe if I had said something, my friends would realize that just because you cannot see something does not mean it’s not there. The more we integrate other’s race, gender, ability into our understanding, we start to see that our differences are something we can all learn from rather than make fun of. As a community learns to accept the differences amongst them we could also provide support system for people living with disabilities to help them navigate a world that normally does not include them.
The media has always been another way to inform people about something they do not know or understand. When a certain reality is presented to you, you can start to believe it can actually happen. Throughout the decades, we have seen the influence television on our culture
In the span of history the media has represented People Living with Disabilties (PLD) but it was often portrayed as something we were to feel guilt or pity, that needed fixing, and the people living with them were not equal to humans without them. The Jerry Lewis Telethon for Muscular Dystrophy was an example of how the world viewed having a disability — parading a bunch of adorable children that were born with this disease and manipulating Americans to donate money to fix it. Around the 60’s the media started introducing characters that were taking part in their communities but the language people began to use was different. They began to use the language that now acknowledged that a person is deaf, has Down Syndrome, or is a wheelchair rider. These were not a group of people we should feel sorry and disregard but that could actually contribute to their community.
Although the steps the media has taken to inform people about disability have been fair, it has yet to complete the whole picture, one true to the actual reality. Of course, we cannot completely rely on the media to educate us as, they are not our educators, they are our entertainment. It up to us as a societyto educate people through schools, special training and modeling to be able to recognize and acknowledge disabilities of all kinds, invisible and not.
While this lack of information becomes an issue when it comes to things like being able to park or go somewhere, it is much more significant when your invisible disability can put your life in jeopardy. The Ruderman Family Foundation has said that nearly half of police shooting fatalities are made up of people living with disabilities, physical and mental. In our conversations about police shootings and mass shootings we rarely discuss how disability or mental illness plays role.
Sometimes, having an invisible disability combined with the racism prevalent in our society can turn deadly. We can see this in the cases of Alfred Olongo and John T. Williams. Olongo’s sister called the police because her brother was having a seizure. When the police arrived, they did not recognize Alfred’s behavior as a person who was having a seizure. He was not on the ground shaking and convulsing which is what is portrayed in movies or TV. Instead, he was walking erratically and reached in his pocket. That with combination of being black alerted the police that he was a threat and they made the decision shoot him dead. We see this again in the case of John T. Williams, a Native American man who was deaf in one ear. As he was walking through the streets of Seattle one day, carrying a knife that he was using to carve a piece of wood, a policeman saw him and yelled four times. When he did not respond because he was deaf, the police officer shot and killed him. According to the Centers for Disease Control and Prevention the Native American population are killed by police at a higher rate than any other racial or ethnic group in the U.S.We again see the racist beliefs mixed with the ignorance of disability lead to the death of John T Willams.
Police are not trained to deal with any form of disability — they are trained to use force. The police officer is expected to match whatever force a suspect is using or threatening to use, if not more. Without being able to identify a person with a disability, it becomes difficult to understand how to deescalate the situation. When the police kills a person wrongly we need to hold the police accountable, of course, but it is the job of the police department to educate and train their force how on how to deal with disabilities of all kinds.
My old stomping ground Miami, FL, a city that has the highest ratio of mental illness in an urban setting, created a program called CIT (Crisis Intervention Team). This is a program that teaches police to identify a mental disability and how to deescalate a situation instead of escalating it. It focuses on allowing People Living with Disabilities to get treatment instead of ending up in jail or killed.
The recognition of disability in the policing world is definitely a step in the right direction but one area of disability that we have continuously ignored is that of people living with an unseen and undiagnosed mental disability. We do not address the idea of brain health until a person goes into mental crisis, like suicide or mass murder, when it is too late and can no longer be ignored. The blatant ignorance of the brain health of kids in America is something that has been sorely overlooked for a very, very long time. When I first had my spinal cord injury and was in the hospital in 1999, the Columbine shooting happened. It was our country’s first real taste of a mass shooting by teens in school. This was such a shocking event for everyone and because we want, we need immediate answers on how something like this could happen.
The news media chose to lead with the narrative that these were the actions of an “outsider” or “loner”. As I was listening to this in my hospital bed, being visited by my friends, I thought we were all outsiders once and sure, perhaps we had occasionally wished the death of someone at school who made us absolutely miserable, but not one of us sat and actually planned out how to kill those people. This narrative of the “outsider” as a murderer was reenforced by the entertainment media in shows like Degrassi: The New Generation where the infamous DRAKE ended up with a spinal injury because Rick was looking for justice against his classmates that bullied him. Like the character, Rick, Dylan Kliebold and Eric Harris may have been outsiders but they were outsiders that also suffered from an unrecognized, undiagnosed mental disability. It was only with time and retrospection that psychologists — after carefully examining Kliebold’s and Harris’ lives, their interactions with each other and their world — concluded that these boys did suffer from a mental disability that led to the ending the lives of 17 people in their community and in the end their own lives as well. It has been 20 years and we see almost the same thing happen again. Who’s really to blame? The kids with mental illness? Their parents? Has the school system failed to meet the needs that kids have today? Or have the communities we are living in fail at providing the communal and familial structures, support, and rites of passage to assist kids today as they grow?
The fact that almost virtually nothing has been done to ensure that people like Dylan Kliebold and Eric Harris cannot get their hands on deadly weapons but what had the school system done to step in before they got to the point of wanting guns in the first place? We were willing to accept the story the media was telling us — outsiders simply getting their revenge. Harris was bullied but however he bullied people himself. Closer to reality were two boys afflicted not only by typical high school problems (bullying and rejection) but who were also each suffering from their own mental crisis. And sadly, when they met, their friendship led to them to a fatal outcome.
How can this be stopped? In secondary schools we provide school counselors and nurses but there is no support for a kids brain health. As a society we have somehow come to believe that our children are free of mental disabilities like depression, anxiety, and in extreme cases psychopathy, but it is not true. According to youth.gov suicide is the third leading cause of death for youth between the ages of 10 and 24. And since Columbine we have not instituted a national program for onsite mental therapists at schools. How would having a trained adult interacting with boys such as Kliebold and Harris changed what they did? We will never know. In reality, someone may not even realize they live with a mental disability and although we cannot always catch it every time does not mean we must not try!
Of course recognizing disability is not the one things that will resolve the meaningless deaths we see at the hand of the police, mass murders, and suicide. There is much work to be done in reforming our justice system and gun restrictions most definitely. Shedding a light on it and recognition of disabilities, however, will help us eliminate the ignorance that comes with having a disability that nobody can see.
As I was finishing this up Joe Chang from the band Golden Light Music had written A Note On Suicide where he shares his experiences with being a suicidal person and some possibilities of things that may help.