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
by Jae
Disability means having
A humanity,
It feels vulnerable,
It feels unique,
It feels real,
It feels honest,
It feels humble,
Disability is both
Social and biological,
Disability makes me grow,
Disability allows me to be free,
It allows me to be open with my self with my mind,
It makes me an expert of who I am,
When going to an expert does not matter.
Disability labels me
Humanity labels itself.
But how can we feel,
When non disabled is the norm,
Because the norm is normal,
Or is just neurotypical,
But neurotypical does not exist.
Normal is a word open to the
Dictionary as disability Is also,
so both normal and
disability are man made
Words to make a heirarchy of people.
Heirarchies that shouldn’t exist,
But do.
Heirachries are part of the
Human experience
Because not all humans
Can be a god, goblet, or high society.
I lived, I live,
Without a sense of self,
It’s been broken
For far too long
Way into childhood
Even beyond to
My toddler years
I don’t know why
I don’’t know how
It just is.
My sense of who I am was never
Even there for a long time.
It was broken, broke,
And even not even there,
I’ve struggled to even carry on for than 1 year.
Every time I splurge on
Who I am, or a glimpse of what I am,
I am pushed over and
Bullied to be a different passing version
Of who I can’t be.
It’s so difficult.
I can’t stand being
Who I am with
Who don’t seem to appreciate me in anyway.
It’s hurt my sense of self,
It’s defeated me many times,
It’s conquered who I could be,
It’s destroyed my livelihood,
It made me feel I can’t love me or anyone else.
Love does conquer all,
Tho,
And sometimes in the moment we
Are this or we are that,
But we are also distorted in our mind
Of how to feel or what to think.
I hope to be
I hope I can
I am who I am.
Because I am me and I can be,
So stop me from torturing myself
And just live to be.
Even with the people around me.
Some people are told they are overly sensitive. Some people tell other people they are not sensitive at all. Sensitivity is part of the human experience. Being sensitive is something we all go through whether we mask it or not. Sometimes being sensitive means feeling like something someone else says, or does in actions, is being overly critical of another persons identity, actions, or things they like to do or say. However, being sensitive is just being human and we all need to acknowledge that. When we are faced with an action or comment from anyone else about who we are and what we are, we acknowledge it and move on.
Society has a general tendency to repress the complex embodiment of difference (Tobin Siebers page 100 Disabilty Theory book).
I am realizing that I feel Wolf Wolfensberger is partially correct about something important that a lot of disabled people dont want to acknowledge. I am para-phrasing; People with disabilities for the most part should leave advocacy to non disabled people until disabled people can separate their grievances from their advocacy.
As a disabled person myself, this has happened to me a lot through the years. As an advocate, disabled and non disabled people have to be impartial. By being impartial, every advocate needs to be open to both disabled and non-disabled perspectives.
I feel Wolf was right and wrong. As a disabled person, I can become impaired due to my emotions, which can affect my ability to advocate a particular issue. Can anyone relate to this?
I have noticed some ppl who are supposed to be family advocates fail as advocates because they either feel for the family members or the disabled person. This is due to the family advocates impairments from their emotions. So Wolf is right in that sense. He is wrong in another sense because disabled people can learn to advocate with experience and learn how to separate their emotions from their job asadvocates, just as non-disabled ppl can.
Families and agencies misconsrue the ideas Wolf Wolfensberger said, which is why many in the disability community are so angry with what Wolf said.
I feel this way also because in my observations with agencies who serve the disability community, too often when the disabled person from the agency advocates, the agency only supports them with the agencys advocacy.
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, Ive 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 its 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 didnt 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:
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 others 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 its okay it took this long. Its okay I am almost 42 years old (by June 2021), and I finally establishing myself with my identity. Its 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 dont fit into the community. It does not matter if its 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 dont be afraid to be yourself socially and professionally. It is not ever worth it to live another persons 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.