Category Archives: editorials

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

Announcement: 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. 

A Response To Wolf Wolfensberger

Extended Interview from Wolf Wolfensberger on Disability Studies

I am realizing that I feel Wolf Wolfensberger is partially correct about something important that a lot of disabled people don’t 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 as advocates, 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 agency’s advocacy.

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.

Citizen’s Vulnerabilities and the Rights of All in this Society – Part 2 of 3

A Collage of my family life cycle: Hope you enjoy the picture!
Image Description: On the Top Left, Brandon's long term relationship, Jessie, next to it is Scarlett Arrow painting in Colorado with finters, next is my mother in Aruba, next is Scarlett smiling in the camera over the summer with purple flowers, Center is my parents smiling in the camera at dinner in Aruba, next to the left is Brandon being himself at a microphone at Eric and Merrill's day before the wedding party in Denver, below Brandon on the left is a solo picture of my Father, below my father is a picture of Eric, Merrill, Mom, and Dad at Scarlett Arrow's baby shower before she was born, next to that is Me, Brandon, and Eric while Eric is a proud new Father at Scarlett Arrow's birth, next to that is me riding Molly last year (my next lesson is Thursday).
There is a light blue border, there is a yellow background and some water seen in some parts of the image as well..
A collage of my family and I with my niece Scarlett, my sister in law Merrill and my brother Brandon’s long term relationship, Jessie

Our society created the mindset of the perfect mind and body back when Francis Galton created the word eugenics and the world decided that between Darwin’s evolutionary theory his creation of the word eugenics, that everyone became instantly obsessed with the human genome. To perfect the body and mind is to deny disability and separate from the imperfect human body to create a monster master race of the human genome that everyone will strive to be. This monster master race that everyone has been striving for since the late 19th Century, created the thinking that Hitler wanted to first exterminate people with varying degrees of impairments to eventually exterminating certain races, religions, and other peoples in the Holocaust who he thought society could do away with. I am sorry to say, but the world, created the way Hitler would eventually think about how the human genome, race, and religion. We couldn’t control how some people would interpret this thinking even today. However, this is not the only thing we need to take responsibility for, we also need to take responsibility for many other things throughout history both in our private lives and in the public.

Everyone seems to not understand that trying to perfect a human genome is trying to perfect something that is constantly changing, and constantly moving around in our bodies just like the universe is constantly moving. We are human beings so I understand why many people are obsessed with perfecting (and perfected) bodies and minds. However, perfecting a body and mind, is a very fine line between what we think is autonomy and what we think we need to depend on others for. As we are Human beings who live in this world, we are connected to each other regardless of the way we identify through race, religion, sexuality, gender, or disability cultures. The way we represent ourselves is independent of being human because being human really means that we need to support one another regardless since we all go through the same trials, tribulations, and rewards in life.

Supporting decisions and the way we as individuals experience life is important. The person centered approach most are beginning to learn now, is something that is a part of human nature since the beginning of time. Yet, we have in the past, and in some ways still do, only respect the decisions some people make while others we feel could not make decisions at all and could not think on their own. We need to give everyone the tools to decide and think about what they want  on their own. This thinking convinced many people that their decisions are illogical and not right. Making decisions for one’s life depends on the kinds of decisions we are making. Some decisions we can decide on our own, but many other decisions we need support from people who can help.  In the end, the final decision is ours.

Whenever I make a decision, it not only affects myself, but it also affects everyone around me in society and that’s when difficult conversations persist. These decisions affect us individually in many different ways. If a child rebels against their parents decision to change who they are, then the child and parents must take responsibility for their actions. Deciding on changing the way a person is, also changes the way everyone else feels about themselves. It is important to attribute every decision I make to the way I think about others and life. When I think about who we are as a people, I think about where we came from, and the people in our life that affect what we think. What we think sometimes can hurt who we are and/or other people.

Contributions Mel Baggs made for Self-Advocacy Movement that Helped Me

Rest in Power Mel Baggs (sie/sier/siers or they/them/theirs)

Amanda Gaul a friend of mine edited this blog post for me. Originally posted on my second blog: Not Done Yet!

Mel Baggs standing in sier apartment while sie was in a video In my Languge from 2007.

In my language with Mel Baggs

In 2006 I was searching for a new way of thinking about disability.  At the time, I didn’t know much about disability studies, rights, and justice. I grew up knowing disability had to be fixed or cured, and there had to be a subset of normal and abnormal, and disability meant dependency. Then I found the Autism Hub and someone on it named Mel Baggs, a person who was autistic with many other facets of disability.


From there on, the whole rhetoric I knew about growing up suddenly became dimmer and dimmer as I learned more and more deeper and deeper into disability studies.  I eventually earned my Master’s degree in disability studies.  And all this came, in large part, to Mel’s contributions on Autism Hub.  At first, I didn’t get Mel’s contributions.  I liked Mel’s work, but I didn’t get it. Sometimes the light bulb takes a while to go on and sometimes it takes deaths for that to happen. In this case, it took Mel’s life in order to fully get it. Let’s take a look into how it did by glimpsing into the work of Mx. Mel Baggs. Here’s what I have taken away from hir work:   When we are born, we are born with a brain, a mouth, a nose, ears, eyes, the ability to touch, and use our sensory system however we can use it. This system includes the brain and after watching Mel’s video on YouTube in 2007, my eyes opened up to remind me of this because I have always had a mouth I can use, eyes to see, ears to hear, a brain to process, and my body to feel. Not everyone has all of these facets at once.  In essence, I am a human being and I can breathe. My realization of Mel’s contributions to my own life was when I watched her YouTube videos showing who she is and what she can and cannot do.


My life has always been rooted in fear, fear of the unknown, fear of speaking up, and fear in what will be if I get too comfortable or too risky. Take for instance, my own bar mitzvah, I had a hard time speaking up to enjoy a party my parents’ made for me with a theme I wanted – “horror movies”. It seemed liked I took it all for granted, and by golly, it seemed like that on the outside, but I never really got over that fear back then, and it slowly passes my life. The fear that disrupts my life to this very day from every job I ever had to a simple friendship and communication to even communication with my own family.  It makes me quiver knowing I have never really communicated so well as Mel had or many others throughout my life. It reminds me that during these times of quarantining and living with my parents, my family and I had a Zoom family gatherings and I still struggle with that fear.  I have never been not fearful and but the fear subsided, a little, and I was able to put the fear behind me the more and more I read Mel’s work.  Mel’s work left me in awe.  To see such communications from an Autistic person who lived their life with a lot more disability than me, an Autistic person whose has an impairment rooted in fear of speaking up. And it’s not that I was not taught to speak up, but I was taught without understanding my fears.  Mel’s work showed another way.   I still have struggles with my fears, but understanding my fears brought me to a time in a couple of years before starting graduate school empowered me to speak up when I took my own initiative to transition my career. I spoke up  to my boss basically yelling at the doctor’s office I was working at, to say how I really felt. A year later, I applied for graduate school. This was my first step of many more steps to come in my journey of speaking up. Many of the people closest to me still don’t see me as a person even as I speak up. This can be frustrating, but I am resilient and always have been. My tenacity keeps me going and Mel’s contributions continue to help me as they are archived on the internet. I know I’m not the only one influenced by hir work, which seems to be a catalyst and reminder that one can speak up, that we each have the power, and no one should be afraid.  Mel would sometimes only type, “I have the Power”, bringing to mind He-Man and the Masters of the Universe as well which was a favorite of mine. 


Mel also wrote powerfully about self-advocacy, particularly in hir piece, the Meaning of Self-Advocacy, found on autistics.org.  As Mel taught us, “Self-Advocacy does not always look good on paper”. I learned that self-advocacy is not just about speaking up, it is following through as a person.  Mel seemed to really understood how to make community, a community unified with everyone and be with the relationships who care. I learned through Mel’s writings and videos that the people involved in advocacy must act and be a team of communication. Sometimes you must be blunt, sometimes you must be told your acting out, and sometimes you must tell your feelings so the other person knows how you feel.   


But there’s something that Mel “got” that meant so much to me.  Sie pointed out in a 2016 blog post, “you can’t address your own oppression adequately without addressing ableism, no matter what your oppression is, whether you’re also disabled or not”.  Hir writing cut to the chase and simply put out there the truth that needed to be told.  


Mel Baggs showed a passion for agency and communication across everyone’s relationships. Without any type of communication, we really have no relationship and communication is not just talking. Another blog post Mel wrote that really delved further into this concept and sharpened my advocacy was in hir article “Aspie Supremacy Can Kill” when they wrote “On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power” (Baggs March 2010.  Humanity is one thing that really means being with one each other with the flexibility to love and respect. Finally, I always learned about Mel from hir work was no one can take the power away from us unless we give it to them, and if we don’t give it to them, then we have our own power. However, power does not mean disrespecting our family, friends, and people we vote into power in governments and other authority positions, it just means ownership in the responsibility of our self.  Thank you, Mel, for a wonderful life of teaching your peers and beyond about speaking up and I appreciate every part of your work you accomplished to show all of us we should not get too comfortable and afraid. There really is a way to speak up to live our own life with what we want. I end it with this from Mel Baggs blog post from 2016, “You get the idea: We don’t all agree . You don’t have to agree with all of us. You can’t possibly agree with all of us anyway” (Baggs May 2016).