Sometimes You See It. Sometimes You Cannot

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 society to 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.

DIY Community and Accessibility

What DIY?

As I started writing for DIYabled, I was getting asked by a lot of folks what is DIY? The acronym stands for Do It Yourself and while a DIY movement has a lot of history, the term itself can really refer to anything from remodeling homes to fixing your own bike. When I talk about it, I am referring to the DIY ethic that has existed in the underground music scene. It was an ethos that had its beginnings in the 1970s as a way for bands to bypass the corporate mainstream industry by, you guessed it, Doing It Yourself. Over the last 50 years, this DIY ethos has grown from the art/punk music scene to what we see today. All genres, from intimate folk shows to electronic dance parties to experimental music, have turned to the DIY ethos as a means to develop an opportunity to make music and play for the people who helped create it.

Why DIY?

I was fortunate to part of a group of folks in the 90s that worked together to set up an infrastructure for bands to tour, put out records and actually play their music for an audience! We lived in the south and wanted to play our music and share our art there and beyond. We did not fit into the mainstream at the time so we created our own spaces: houses, basements, even the outdoors. No places were off limits. With a generator and some speakers a show could be created just about anywhere. It was a community we created ourselves for ourselves. DIY is about community. And without a community, we are alone.

 

Why think about accessibility?

People Living with Disabilities (PLD) make up the largest minority in the world. It’s been reported that there were about 57 million PLD in 2010 in the U.S. alone. As a community, if you are not thinking about accessibility, you are excluding a huge group of people. Any group of individuals that understands the true meaning of the DIY ethic also understands that without it, this minority could not live. Because most people I meet have no idea what accessibility means exactly, I decided to make this zine to give some tips about DIY accessibility.

How to know or make your space is accessible?

Due to the nature of DIY, accessibility is a huge issue. But this does not mean that you can’t try to make your space PLD friendly if not completely PLD accessible. What that means is PLD can get in and out of a space to enjoy an event, even if they may not be able to use the bathroom or parts of your space are not completely accessible.

The space. Wide open spaces with with no obstacles like record shelves or garbage cans in the way.

The entrance. If it is completely ground level, perfect. If there are stairs, build a ramp. There are lots of DIY wheelchair ramp tutorials on YouTube. The ADA requires a ramp ratio of 1:20, so for every inch of height, you need 20 inches of length for the ramp. A step that is 3 inches would require 5 feet or 60 inches of ramp. This is not always possible to do with the amount of space available so if you have to, just make a steeper ramp. Do it! Having a ramp will allow any person in a wheelchair to access your space. If it is too steep you can always use our greatest resource, humans, to help push the wheelchair up the ramp.

Doors. The ADA requires door widths to be at least 32 inches. If your door width is a bit smaller, that is fine because that width is for an average wheelchair to fit through the doors. Some people have wheelchairs that are smaller than 32 inches and some that are larger.

Bathrooms. The biggest challenge. ADA has specifics and from my experiences, DIY spaces rarely have accessible bathrooms. A door that is actually wide enough is required but if the wheelchair can actually get in and the person can get to the toilet, having grab bar would help. You can purchase them at your local hardware store and they’re really cheap!

In reality every space cannot be accessible. When a space is having an event, informing people in advance about whether or not they can get in is another way to include the people of your community. An easy way to do this is displaying an accessible symbol if your space is PLD accessible. This is a symbol saying that you are PLD friendly, please contact for specifics. You can also put up an accessible symbol with a line through it if your space is completely inaccessible. Disability comes in so many shapes and sizes that you should always offer contact information so if PLD are intrested they can make 100% sure they can get in. These small gestures of consideration are important because there is nothing more heartbreaking than watching all of your able bodied peers walk into an inaccessible space.

19 Years of Story

This month, February 2018,  marks the 19th anniversary of my spinal injury. Way before I was forced into the life I have now, I was always a person who consciously observes the world around me. In these last 19 years, I have observed a lot about the life of living with a disability. Some good, some bad.

 I was never a person who was truly accepted by my peers. Growing up, I moved a lot. I was constantly the new kid. Always alone. Slowly, this led to me being an unintentional outsider. Back then I hated it. I wanted to have friends. I wanted people to like me. I wanted to hang out with all those people at the lunch table that were laughing and having a great time. The problem was they did not want to include me.

 As I grew older, I found my own footing. I began to not care about fitting in. I started to have confidence and pride in myself. I began to meet people who included me without question. Then I fell and had a spinal injury. I was disabled in a wheelchair. I woke up to paralysis and very quickly began to observe that I once again did not fit in.

 After I had my injury, I was fortunate to have the support of my family—a father who constantly told me how I could still do anything I wanted despite my disability and a mother who set an example of acceptance, patience, and resilience. She had been disabled all my life and she continued cook, clean, and travel the world!! She did the most she could do.

I also had a lot of friends and family who called. I was so grateful for this because after I became injured, I was literally air-lifted out of the life I once had. I was very active in my community. I played in a band, made art, supported and helped cultivate a scene. I went from this culturally rich life surrounded by people to living in my parent’s basement. Robert, my long-time partner and band mate had to work. I was alone quite often, so it was nice to have people to talk to.

 As the months went by, I slowly became comfortable as a person living with a disability. It wasn’t easy to re-learn how to brush my teeth, use the toilet, take a shower, put on clothes, get out of bed, get in bed, and manage having no bladder or bowel control. I had to learn how to live again. Despite the situation, I came out of it very calm, happy, and ready to conquer the world! When my relatives or old friends would see me, they would quite often share at how amazed they were at my positivity. The positivity came me naturally. It wasn’t something I had to struggle to acquire.

When I would go hang out with a group of people, I often found myself saying, “What’s going on? I’m the one that’s paralyzed and I’m the happiest person in the room!” It’s not necessarily true, I’m not always happy, but when I make an effort to go out into the world, and believe me it is an effort, I want to enjoy myself. I am so lucky that I can always get lost in the moment no matter what’s happening.

Having this positive attitude is great for me and my mental state, but there are some negatives to this blessing. Quite often, because of my natural positivity, people forget I am a person that lives with a disability. On a certain level that actually makes me happy but on another level, it deeply saddens me. Do I have to fit into the stereotype of what a person with a disability is—depressed, angry, helpless—for people to actually acknowledge my disability?

 I want to make it clear what I mean when I say acknowledge.

·       When you go to a show to watch a band and the space is completely inaccessible. Sitting in a corner alone watching all the people walk by you with their beer saying hi and not one them saying, “Hey, do you want to see the band? Let’s clear space for you to do that.”

·       When you are taking portraits to raise money to get a van so you can increase the independence of your life and, due to your disability, you cannot get the lighting right. Suddenly, you see a friend walk in and you are so happy because you think they can help. You ask them to take a test photo. You do it and that person looks at it and says, “Oh god! You made me look like Stephen Hawking’s mother! Haha!” and walks away instead of saying “Hey, it looks like you are having a hard time. The lighting is harsh. Can I help you set up your lights?”

·       When, after overcoming the obstacles of being disabled to play in a DIY band, you travel to a town where everyone knows you are in a wheelchair and there is no ramp for you to get in or out of the space you are playing. Not one person even thought of it. Then your band mate calls to complain how your partner upset some people because he was vocal about the lack of awareness or empathy towards your situation. In that moment it would have been really nice to hear, “I am so sorry there wasn’t a ramp there for you. That must have really been hard for you. Next time, we’ll make sure that doesn’t happen.”

·       Or when your family and friends know you suffer from great amounts of pain but because they do not what to say, they just don’t call, leaving you alone and isolated. Which when you are in pain, is especially heartbreaking.

 Pain. I have it every day of my life. But like my mother, I choose to do everything I can despite it. I wake up barely able to move my body, wishing that I only had paralysis. Paralysis, for me, was not something that was impossible to overcome. But pain? Pain is a completely different game. When there are no solutions, you have to make a choice. Will I let this pain completely smother everything I want to do, or do I want to enjoy everything I can? Unlike other types of pain, my pain is from nerve damage—specifically neuropathy and spasticity. There is no real cure for this. After wasting many years with the medical industrial complex to try to find a way manage this pain, I finally decided that I am not waiting for a cure. I will push past this pain and do whatever I can.

 I do not waste time on the idea of trying to remain “positive about it all” because my pain is not positive. The intensity of it keeps me from doing everything to my complete and fullest potential. This makes me both really sad and it pisses me off, and that is ok. Nobody will ever find the complete package. That package being a world where sadness, anger, and all the emotions in between does not exist. The modern thought of fixing a person because they are not happy for an actual reason with drugs is wrong and unhealthy. The “remaining positive” dilemma does not only affect People Living with Disabilties (PLD), it has become ingrained as part of the modern human condition.

 The human condition. We, like all animals, instinctively look at people that are different from us and form opinions based not only on the color of your skin, your gender, your religion, your sexual preference or identity, and your ability but also on things like financial status, fashion, and even the food you choose to eat. In the United States, we are seemingly very lucky to live in a country that has laws like the Right to Vote Act and the ADA to protect the Civil Rights of our citizens. The ADA specifically protects the rights of any PLD so they can have the independence and opportunities they need. These are opportunities available to the able-bodied on a regular basis so that the luxury of having that ability is actually taken for granted. How would an able-bodied person feel if they were physically stopped from participating? This happens to the PLD everyday. When all you are greeted by are broken curb cuts, inaccessible businesses, or people parking in the accessible spot to pick up their pizza or get a cup of coffee, it makes you realize how much society does not include you or truly acknowledge your disability. Having the laws is one thing. Abiding by them and expressing concern for your fellow humans is another.

 I do not want to give the impression that I do not have friends and family that have gone way beyond my expectations for me in these years but from my experiences living life as a person with a disability, I start thinking about humans. We’re the only species that are born a certain way and then try to correct their behaviors or actions. Throughout our history we have protected women and children, spoke up when one human is oppressed to another. Most importantly, we have found ways to save lives, achieve longevity, and conquer fatal diseases. If this was 50 years ago, I certainly would have not lived. It is because of this drive for us to live longer and have stronger lives, we have essentially created a larger community of People Living with Disabilities. We pat ourselves on the back at what a great job we do saving these lives but really, what good is it to save people’s lives and not support them to be able to live? People Living with Disabilities, like every person that is oppressed, are constantly accepting the bad with the good and asking, “How do I fit in the world? What is my place here?”  At some point you have to make a decision: “Do I want to fight for the rights of all humans?” Yes!! Then that fight becomes your life purpose. This how the fight for everyone’s equality is achieved.

 I certainly understand the isolation that can occur because you do not have the right color skin or are not the correct gender.  I have never felt so unwanted as I have as a person living with a disability.  I think that needs to change but my question is how?