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.
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:
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.
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.
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.