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? 

A Job That is Never Done !

As 2017 unfolded, it forced me to think about our history as Americans. Sure, in school I learned a few things about women’s suffrage, slavery, and Martin Luther King Jr, but if we stepped back and took a closer look at America’s history, civil rights was not the popular idea as is seen today.

Black men were allowed to vote in the United States in 1870, before women of any color, but barriers like literacy tests, grandfather causes, and the poll taxes prevented most black men from voting. The voting rights act was not passed until 1965, 95 years after black men were allowed to vote. This new law made sure that every person (women, people of religious minorities, Latinos, People Living with Disabilties, LGBTQ identifying, and whites) are allowed to vote in the United States.

When you’re born into a generation when these rights already exist, it seems so strange to imagine that at one time, we voluntarily chose to let only Christian white men vote. Somehow it makes you think these rights were acquired overnight but they were not! When we look at where we are today and we see the discrimination due to religion, race, gender, sexual preference/identity, and ability, we should not be surprised.

Civil rights was something that we accomplished as a country on paper; however, we did not really continue fighting for it as a whole society. Instead, discrimination was shrouded in silence. We have laws in place to prevent these discriminations but a woman may still not get a job because of her gender or if she reveals that she is interested in having a family with children. Another person may not get a job because of the color of their skin. This is all due to the personal or corporate secret discriminations. Employment is merely one area where we see discrimination in modern times.

Let’s look at voting. How much different is the discrimination that exists between then and now? Representatives gerrymander their districts, effectively choosing their constituents rather than having the people choose who they want to represent them. This suppresses the votes of the very people to whom we have given the rights. This is done in a much more covert way than having things like literacy tests or poll taxes which was obviously meant to keep black or poor men from voting. So when we turn to our modern “It’s not my fault” mentality, we somehow feel that these rights are things we born with, not something people had to fight for and fight hard. When immediate justice is not served, we want to look to others for blame: the poor, the uneducated, the Russians. But when we step back and truly look at the history of discrimination in the United States, we can see that not only has it existed, but we can also see the people that have been discriminated against who continuously fought for their rights  whether their actions quite often failed more than succeeded. Yet despite the failures, these people still got up and spoke their minds. They essentially became the thorns poking continuously in the sides of the people who were suppressing their rights. And all this was done in a world where getting a another person to listen about civil rights seemed anything short of being a miracle. So when we see discrimination and do nothing except complain about its existence on our social media while 20 of our friends hit the “like” button, are we really moving forward? Or will we need actual human action to express how important our rights are to us?

It is true that we have been tested this year as to what our beliefs are as Americans. To spite this, we must not forget the generations before us fought and fought hard to make sure we have the rights we all deserve. When you are feeling overwhelmed by the injustice you see, step away from the news, social media, and opinion blogs and look to your right and then to your left. Look at the people around you and remember no matter who see — a woman, a queer, a Latino family, a family of mixed race, or a person with a walker — just remember there were so many people before whom not only fought but gave their lives for these the rights we enjoy so far. Discrimination will never be completely extinguished. When any person is being marginalized, we are accountable to make our voices heard, to stand up for them, and to forever continue this fight that was so bravely started for us a very long time ago.

Roll a Mile in My Shoes

Living in a society that does not truly welcome you can be disheartening. I certainly don’t except everything I talk about here to change overnight but I do hope there can be more awareness at how our actions or inactions can affect those around us. After becoming paralyzed, I knew the landscape of my life would be changed forever. Learning to maneuver physically in an able-centric world has obviously been but achievable. Although difficult, this was to be expected. What really surprised and frustrated me was how my physical disability isolated me socially, how I am regarded or disregarded when I am out in the world would affect me on a much more fundamental, emotional level. Of course, it’s hard for others to imagine each and every way a person can come to feel isolated by a single act on their part and I understand that not all of the ways I am treated are purposeful or done with knowledge or malice. These observations are about some of the ways people’s awareness can be raised to comprehend what living with a disability is like from a first-hand perspective.

The lack of independence and spontaneous transportation for PLD creates the phenomenon of forced intimacy. We are forced to reach out to our community so we are not isolated but reaching out is not always easy. It changes the dynamic of your relationships with your family and friends. It forces you to reveal things about yourself that you don’t really feel comfortable sharing and turns the dynamic of that relationship to one of sympathy and dependence, rather than helping and assisting. Let’s look at some of the ways this manifests.

Transportation, either public or private, is important for everyone to have access to so they can go to work or socialize. For the most part, transportation is ability centric. Let’s consider public transportation as private transportation tends not only to be cost-prohibitive but, when a specialized vehicle is needed, you can’t just hail any old taxi going down the street. In larger urban areas like New York City, if you are able bodied, you have access to any train or bus available and can go anywhere you need to at almost any time. But what happens when you need an elevator to get on a train? Instead of there being one at every station, you only have access at select stations and those may not be anywhere close to where you need to end up. If you then need to use a bus, many of which are wheelchair accessible but often overcrowded, you had better hope there is space on it and those occupying the front section are willing, without resentment, to give up their seats.

When I lived in the Bay Area, The BART, while definitely one of the more accessible public transportation systems, even so there is a lot of room for improvement. Oftentimes I would try to enter or exit a train platform only to find the out of order sign on the station’s elevator. With no prior notice at any point of my trip. I would then be forced to get off the train, find out the lift is broken, get back on, ride to the next station, get off, and ride back in the opposite direction to use the elevator on the other side of the original station where I intended to disembark in the first place. Suddenly, your trip became twice as long, and ten times as frustrating, as the commute of an able bodied person.

Then there is the issue of sidewalks. Some cities do not have proper sidewalks that everyone (able or not) can use to travel safely to their destination. If sidewalks do exist, there may not be curb cuts or, if there are, they are extremely damaged and impossible to use as intended. At times I must roll in the street and use the bike lanes (if they are around) to get up the street because aside from there not being any curb cuts, I cannot use the sidewalks themselves at all if they are in great disrepair. I am unable to share sidewalks with pedestrians and am sometimes in the way of bicyclists or unsafe near traffic. This creates a sense of both being in the way and not belonging to either world.

A lack of space is another way PLD are isolated. It’s been a trend over the past 2 decades for restaurants or performance spaces to open that are often too small for a wheelchair. In these places, PLD are forced to ask complete strangers to make room so you can get to your table. Sometimes your chair is so big that you are invading their space, forcing the dynamic of social interaction into one in which PLD feel like they have to apologize for their presence and the able bodied feel inconvenienced for having to accommodate them. The grocery store is another environment where PLD are forced to have to ask complete strangers for assistance to reach a product, taste a sample, or even just get through an aisle that is not wide enough. (The original Berkely Bowl in Berkeley, CA and Greenlife in Asheville, NC are two incredibly inaccessible examples). Navigating an aisle filled with able bodied people can be quite a task in and of itself not to mention the social skills needed to ask people who are not paying attention to you to move so you can get what you want.

My last observation is focused on simple awareness and mindfulness. I find that in most cases, able bodied people unintentionally cause feelings of social isolation for PLD without even realizing they are doing it. I remember one of the first times friends isolated me without any realization. It was in a park for someone’s birthday. Everybody that was celebrating was sitting on a little pavilion that had a step. Being in a wheelchair, I couldn’t access where everybody was so I sat alone, isolated from the party. Nothing is more depressing than sitting by yourself as you watch all your friends gather in a space that is completely inaccessible to you, enjoying each other’s company without even a second of awareness that the only thing that prevented you from socializing with them was simply a step. It’s sometimes the littlest things that can get in our way and make us feel disconnected from others.

What PLD must endure everyday socially is so detrimental to their state mind. We as a society must recognize, accept, and acknowledge how we ignore, forget, or are completely unaware about how we could be isolating PLD. Then we will be on our way to living in a place that is really inclusive.