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Featured post

A Fable: A Tale of Two Angels

The whole community broke into loud cries, and the people wept that night when hearing of the passing of their beloved Rabbi who had just died. Every one came together to pay their respects to this extraordinary man. They came to his home to offer their condolences to his family. The home that the Rabbi had lived in was enchanting and gave people the feeling of calm, serenity and peace. It was an inviting and warm place to come to.  People had concerns about who was to fulfill the Rabbi’s dream and hard work to have “March of the Millions in Washington D.C. the very next day. Unfortunately, there was a passing of tears instead of laughing. Every one had been anticipating this event as a happy and monumental day to come, no body could have foreseen this tragedy which had just hit them in the face. The Rabbi had realized a dream some years ago and he would not even be around to see the fruits of his labor of love.  He was not a charismatic person, one could call him more of a humble and non assuming individual. His quest was to lift the spirits and help guide people who came to him for guidance. He did not have much in life, but his beloved family.  His only daughter, Sandra, was overwhelmed and in disbelief with the outpouring of love for her father. On this stormy night many people were at her home to find out what the plan will be to continue the work of this humble old man.  The next day was supposed to be the big International event. Sandra felt the need to discuss who will now give the speech the next day.

A few years back the Rabbi had an idea to have a March on Washington. He had read about the Million Man March lead by Dr. Martin Luther King, Jr., however his feelings was to help Autistic people earn the respect and dignity they deserved. This came about because of the brutal death of his Autistic son. His son, Mark was 21 years old when he went off to college in NYC to become a Rabbi to follow in his father’s footsteps. Mark was walking down the street when a street gang started poking fun at him. They mocked his quirky and odd movements. Mark was being called names like Freak, Gay, ‘Queer, ‘Dork, Nerd, Cornflake, ‘Stinky, and Klutzy Clown. He had never even heard many of these derogatory names. Mark was beaten up, spit on, and pushed in to sewers on the nearby street. This incident was the beginning of the many bullying and harassing incidents that he started to face on a daily basis. His father and sister became so distraught that they felt enraged to do something about this. They started to do research realizing that this bullying was happening to other people who were Autistic. Mark could not bear this pain and took his own life using a shotgun. His family realized after his death that he had been beaten up and sexually abused.

Sandra was shedding tears over all the tragedies she had endured in recent years. The loss of her Autistic brother, her mother dying of Breast cancer, her husband Jack’s death caused by a drunk driver, and now the death of her father.  The only family she had left was her only daughter, Lana.

Suddenly Sandra saw her brother before her. Mark was carrying his book bag over his shoulders. He seemed to be giving her a message of hope to continue his father’s work. Sandra decided to reach out to Mark’s best friend, Jephunneh, to help her move forward in her quest to educate people about Autism and other disabilities. Jephunneh always had a sparkle in his eye and a smile on his face.  He felt honored.

As every one turned to bed, Jephunneh went to take his medication and inject himself with his insulin pen. Jephunneh was very excited and immensely serene to speak on  his friend’s family’s behalf. However Jephunneh was low on insulin.  He was unsure what to do. He gave himself the rest of the insulin hoping heard be fine in the morning. Jephunneh has had diabetes his whole life.

The very next morning Sandra went in to wake Jephunneh for his bright inspiring speech when she found him not moving and unable to wake him up. She called in the paramedics and the emergency personnel to try and revive him. Unfortunately Jephunneh was already dead for the past few hours.

The people were starting to gather near the Washington monument. Sandra was in a panic. Her followers told Sandra, there were thousands of people appearing with their signs posted filled with messages of hope and support. Sandra nervously looked out the window seeing thousands of faces, she noticed one of the signs which reads, *Nothing about us, without us*. She realized that she must give her father’s speech.

As she walks to the podium, to deliver her father’s speech, she began saying:

There have been tragic events in my life recently, but I have to continue the message my brother and my deceased father would want to give. I am encouraged by all of you who have gathered here today to hear me speak on behalf of my father. I know his message is of hope, tolerance, and love of humankind.

Sandra began the speech with just flickering of eyes gazing on her.

“Today is when we listen to powerful stories coming from the heart. I introduce you all to listen to every word with nothing more than a kind heart.  Disability is a part of us all, no matter who we are, we are not immune to having someone in our life have some disability that has impaired them in some manner.  Even those who are disabled have every right to stand up for who we are and have our voices heard.” Sandra cries tearfully, stops her father’s speech for just a moment, when she resumes she states, “One day there was a man named Jephunneh who was a good friend to my brother. He lived such a joyous life and gave us the blessings we need to hear (sighs and crying from Sandra). I can’t believe what had happened to my brother. If only his friend could have made him stronger.

{ ~The Angel of Jepphunneh~ joyously flying toward the crowd.}

Jepphunneh’s wings flew and soared around the crowd of millions of people. He flew, twisted, turned, and slowly came to a stop as he stood next to Sandra on the stage.

Jepphunneh spoke:

“We are here today because Human rights affects us all.  It all started with the Autistic rights movement that tells how every one in society is an individual who has the very need to communicate, contribute with their own unique thinking, and understand who they are. Communication is clear and presents fulfillment of what attributes to our well being. Some people rebel against only knowing their own way while die fighting for their lives. We must all have an understanding of these behaviors in order to be able to embrace the rights of every Human being in order to love the society we built.  This not only is important for society, but is important in our every day interactions. Not every person communicates the same way, like every living creature expresses themselves differently.  Love is something that connects us all man to female, creature to creature. We are here for the spirit of our soul to connect, learn, and follow our mission. Furthermore, the love we give is the love we gain. Be thankful and courteous to all those who are around you no matter who you may meet; never let your society down. I know many of you have contributed to bullying others, but we need to all communicate in a way by using our voice, body language, or by other means of communication. Feel free to listen and communicate when its your turn. For the journey of a thousands words spoken is just a short baby step to your fullest potential for you to gain your spiritual identity…

(Tears flow through the eyes from every one around)

As a rainbow appeared in the distance over the mountains, the many colors resembled the infrastructure of life and who we are.   A guardian angel appeared out of nowhere:  “As the colors of the rainbow appear in the sky, each of the colors of the rainbow will appear over each one of you. Take the color as a part of who you are and remember how important this day was for you.” The guardian angel vanished out of nowhere, but Sandra cried as she suddenly saw Jephunneh appear with her brother, Mark, her mother, and her father flying in the sky above.  She held her daughter’s hand as she watched them disappear in the sky, smiling for hope of a better tomorrow.

OUT, J

J rides Molly at Rebellious Stables after grasping more concepts about riding horses.

Embracing My Life Transitions

J rides Molly at Rebellious Stables after grasping more concepts about riding horses.
J rides Molly at Rebellious Stables after grasping more concepts about riding horses.

Since I last posted about My Wild Journey Towards Acceptance, a lot of life developments happened. This article is an update about my journey. I graduated with my Master of Arts degree in Disability Studies in Spring 2019.  I also turned 40 years old last year, and went to my dream location, Scotland.  I hope to live in Scotland 7 years from now. Over my last 20 years, I’ve developed into the person I am today. 

Developing a sense of self can take a while, and for me, I finally developed it, but first it took an identity crisis which led to mental health crises, choosing different paths that were not right for me, and not having good boundaries with myself and others. This was a perfect storm. A lack of communication which led to different therapies with professionals. Part of what really helped was when I started and completed my graduate degree. 

I always knew I was different from when I was very little, but at the same time I always wanted to be like everyone else.  It took me a very long time to accept who I am.  This journey was wild, but not unique. Many people go through this in their lives also, after all it’s what makes us human.

One of the things I learned in graduate school is how to be successful. I also learned what I want to do with Disability studies. I want to utilize my skills in media and the arts, as a Disability Studies scholar. In doing so, my message can be understood more clearly.

Being a person who is Autistic with many facets of trauma, it can take a much longer time to dissect. I began to discover who I was after my open-heart surgery in 2010.  At the time, I started to question why I made choices based on what other people wanted. I rested in the CTICU after the surgery and wondered about who I am.
 

While I was resting with care at the hospital for almost 4 weeks, I wondered about how I could develop my own sense of self. As I moved forward to the Step Down unit, all these things I thought above drove me mad. It subsided a bit after I went to the regular unit at the hospital the next day.  I had several of these episodes over the next 10 years  (especially in February 2019). It took me a while to make sense of my life when I had trouble making sense of the community I lived in. All of this can drive anyone mad with hysteria. My life as I once knew it didn’t make sense nor make feel very good.

I was identified as Autistic in 2005. This is only a small part of my identity that I needed to resolve, and even then, it was not resolved. Being Autistic is part of my identity, but there were several other facets I was denying:

  1. I was denying what my goals were in life, denying my true gender, denying my sexuality, denying how I like to socialize, denying my ability to communicate with my family as well as the community.
  2. I was also denying how I like to be by myself in nature at  denying my autistic nature, denying my Jewish heritage, denying my faith and spirituality, denying my need for meditation, and I was denying my space in the arts while developing my own philosophy. 

They say open heart surgery is a physical trauma, but for me, it felt like a spiritual awakening. I was finally able to grasp the idea of my life. I am who I am for a reason and not what anyone else thinks or does. 

Teachers, my parents, and professionals tried to help me in the past with the very things I should focus on, but I would hastily cave into other’s goals rather than work on my own. 

It was not until 2008, when I met someone who shook me up and forced me to realize what I needed to focus on. This is when I began to grow.

I need to realize it’s okay it took this long. It’s okay I am almost 42 years old (by June 2021), and I finally establishing myself with my identity. It’s okay I am doing this now and not during my adolescence, because guess what? Adolescence does not always happen when it is supposed to happen, a good friend once told me, it happens when you are ready for it to happen. Everything happens for a reason as I have always believed! I presently work at an independent living center which has helped me tremendously. This and many parts of my life continue to help me with various transitions of knowing who I am as I begin to accept my whole identity. 

It is the start of the back end of my adventure and the days seem to get rougher and rougher. Every day I try to show everyone what my life has always been like, but had trouble expressing. 

However, I need to be careful with obstacles in my way. I need to pace myself, stop to enjoy the moments, and enjoy life even as I reach a peak. As I move slowly, I observe my course in nature. 

Eli Claire states in their book, Exile and Pride: Disability, Queerness, and Liberation, “it leaves me feeling queer in the queer community”.  I do think this quote is relatable to everyone. At times, many people don’t fit into the community. It does not matter if it’s an urban, suburban, or rural community, there are many different ways we all feel disconnected by our community. Fitting into a community is an important part of our need to feel social at times. 

My advice to you as I continue to work hard on myself these days is don’t be afraid to be yourself socially and professionally. It is not ever worth it to live another person’s dream, identity, or sense of self. I had to learn this on my trek.  I am ready to embrace parts of myself I already accept, while I am proud to accept aspects of myself I was denying. My wild journey towards acceptance was treacherous, but I am blossoming into myself with my career path, faith, gender, and abilities. 

Citizen’s Vulnerabilities and the Rights of All in this Society – Part 3 of 3

J in front of B and H in NYC with a mask wears a tye dye shirt which reads 3E Love with a heart shaped wheelchair. Embrace, Empower, Educate.

Medical charity and self-advocacy organizations have always been at odds with interpreting disability with each other. Medical charity has always interpreted disability with the ideas of guardianship and fixing or conforming. Self-Advocacy organizations take a different approach. They teach the ideas of supported decision making based on self-determination, self-direction, and interdependence. I have been through conflicts between medical charity and self-advocacy as some of you may have also through the differences in philosophy. It’s really ‘Nothing about us, without us’ which is what I believe. 

When thinking about supported decision-making, everyone thinks about the way they want to live their life. For example, when I choose a different way of living from others, it does not mean it’s not a quality life.  If I choose to move out, then that’s my choice. A quality life is subjective to what an individual actually feels they want in their life or need at the time. No one can suggest a better quality of life or social skills to make others conform. People who interact with me need to remember who I am as an individual and how individuality really is what everyone wants.

This leads to too much frustration because of a social construction of conformity the mainstream media has used every day. Some people may be more frustrated with who they are than other people because their experiences with how society treated them or how individuals treated them in the past made them feel particularly unjustified and unaccepted living their life. I have been an example of this. This responsibility is not only what I need to be accountable for, but also what many who interact with me need to do as well. Conformity is also nonconformity that some may not fully take into account. 

Many people have their own way of living while having their pride that makes them feel good about who they are. I can do what is right for me, and anyone who interacts with me has to know we can’t enforce our influences.  Universal design is important in this way! Why can’t we create universal design in everything we do in society so that everyone feels that they can live their life the way they know best? Our society has always conformed to the idea that its citizens are vulnerable and need to be corrected to fit in, not in their natural way of living.

The world is a tough place to live in. Autistic people including myself can be vulnerable, we are all different from each other, and simultaneously we can all be vulnerable to what others are thinking including non autistic people.  However, it does not mean as individuals that vulnerability is a weakness. Human culture is defined; all of us think whoever is standing out in the moment yelling the loudest, is the leader. This is not true, we are all leaders of our own life. It’s called self-direction.

In order to think through how to create a less vulnerable society, we can help by providing to strive for universally designing a world that everyone can live in with dignity, respect, getting their voices heard, and being able to function with everyone around them no matter what. Any one can lead their life however they want. We need to do better and we need to ease the pains of so many people, including Autistic and non-autistic alike.