Tag Archives: CUNY SPS

A Wild Journey to Acceptance

Hi Everyone,

(TRIGGER WARNING: There is noted talk of mental health crisis in this post)

I know it has been a while since I posted on this blog. It has been a long time because I am finishing my Master of Arts in Disability Studies at CUNY School of Professional Studies this Spring Semester 2019. I also turn 40 years old this year. I have been through a lot since 1997 to 2018. From that whole time which is a 20 year lifespan, I made a lot of stupid mistakes in my life, was very naive, and even went through 2 psychiatrists during that time. The first psychiatrist during that time of the first 8 years was a complete mess and utter disaster which caused the beginning of a living nightmare for me.

During the second half the 20 year lifespan, was seeing a different psychiatrist to try to stop the living nightmare from occurring. The living nightmare continued unfortunately until very recently in October 2018, when it started to subside and ease more and more. Now, I have to clean up everything that happened from 1997 when I first started my undergraduate schooling to October 2018 and take responsibility for everything. The best thing I can say will help me through this process is finishing my capstone to complete my Master of Arts degree in Disability Studies.

One of the things I learned in graduate school at CUNY is that I learned the process of coming up with my own ideas and learned that I don’t have agree with everyone while certainly I don’t even have to disagree with everyone either. I just have to come up with my own ideas and add to the discussions that are already happening. I also learned what I want to do with Disability studies. A strength is to use my knowledge and passion in Disability studies to use media like film to create media for the public to understand the message. I even made my first movie in 2017 when taking a noncredit class at School for Visual Arts in digital filmmaking. I met a friend from School for Visual Arts who is an actor to help me film it. It is on YouTube and this past summer I went to Joey Travolta’s Film Camp in New Jersey where I met someone to help me caption the film. I also do other things too with the paintings I make and the poetry I write as well.

Yet, I also have to learn from all the mistakes I made from 1997 to 2018 as well and there were too many of them. From being too adamant about choosing an undergraduate major as a Freshmen right out of high school to being too ashamed to admit a medication that is used for OCD caused me to be suicidal in Spring 1998. I told medical professionals I was hallucinating because I was too naive and thought telling that sounded better.

I actually did The Moth at the JCC Manhattan for the 2014 Reel Abilities telling my story in less than 5 minutes about my path to autism acceptance starting off with the experience from Spring 1998. It didn’t make it past the dress rehearsal. However, The Moth and the other participants, thought I should have done the final performance telling my story. However, it was the decision of Reel Abilities to choose who they wanted for the final performance. Everyone else loved my story. So, they never chose my story.

Anyway, from Spring 1998 to October 2018, I started on a whole lot of medications that literally distorted my thinking and created a living nightmare. When I finally left the first psychiatrist who started this, I saw a new psychiatrist in 2005 to this present day who wanted to change my medication all that time. This new psychiatrist confirmed what I know now that I am Autistic. However, it took him until October 2018 to change my medication to a different class of medication when the living nightmare finally came to an end.

One can only imagine all the stupidity and mistakes that occurred from 1997 to 2018. However, one can also know the positive things that happened too. I also learned recently since October 2018, sometimes when people see positive changes in the person who starts to feel good about themselves, those people don’t like it especially when they see the person who feels more positive no longer gives their power away. Hence, we then learn who really cares.

Many of the things I did in that 20 year lifespan, I wish I could take back and change, but I can’t. Instead I have to move forward with my life experiences from those 20 years taking the good with the bad. Every experience I had was a learning experience and it was the path I needed to go through whether I like it or not. Whatever experiences I will have in the future from this day moving forward, I will be ready for gaining the wisdom from those past 20 years and never go back to rehash any of those past experiences. They were just experiences I needed to go through to get to the present day.

As I move forward, I have to say that my experiences in graduate school has given me the opportunity to grow tremendously. I even did an unpaid internship as an elective during Spring 2018 for the New York City Mayor’s Office for People with Disabilities (MOPD). I learned so much from the Commissioner of the MOPD, Victor Calise and his whole staff. From that internship, I impressed so many people.

When I put the internship on my LinkedIn account after the semester was over, a connection I had for like 10 years or so, saw it, and emailed me to interview with him. The workplace was very close to where I live and is at the local independent living center. I interviewed with this independent living center and now I am working part time there while I finish my Masters degree. My last semester in graduate school I will be busy doing a lot of reflecting and creating the project I want to do for my capstone. When I graduate this May to receive my Masters degree, I will remember that it will be something I earned and will be proud of that I finally did something for myself without any influences from anyone else. As a professor once told me too, no one can take that away from me.

I will also remember where I came from during the 20 year lifespan that wound up being a living nightmare for not only myself, but my family too. I just need to remember it was the past, and now I can move forward. As I move forward, I can only remember how much I wanted to start graduate school, but couldn’t start right away. So, I took an undergraduate disability studies course at CUNY that the professor teaching it was very impressed with me, and helped me to start my graduate program by writing a recommendation for me to become a Kennedy Fellow for my first semester in graduate school. I can also remember something my professors told me during my first graduate semester at CUNY, to always think broadly and it is okay not to be perfect. I will always remember that. Now, I am a Kennedy Fellow once again as I finish up this degree.

It has been a long journey to get to this point with the new medication and I feel happy.

J

My “Dream that Turned Into Reality”

The History toward achieving my self-determination

(IRI) Independence Residence, Inc. (the IRI facebook page is here and twitter is here too : IRI and their youtube page is here: IRI) is a non-profit agency that works to help establish connections and better relationships for people with developmental disabilities and other disabilities to be self-actualized, committed to fulfilling independence, guiding the people they serve, and creating connections to last for a lifetime. This is what IRI does because they really care and are simply the best agency in the New York City region.

I started at IRI back in 2013 as a mentor/self-advocacy liaison as I continuously work to strive to positively impact the individuals that are served by the agency. Before I started at IRI, I always knew what I wanted to do, but was afraid to go about it. IRI gave me this opportunity as a gift that has allowed me to embark on my journey toward not only self-discovery, but a journey at helping others in the disability community find themselves and their voice.

Self-Advocacy is an important factor that helps people know who they are by identifying the way any one feels comfortable, learning to speak up, knowing their civil rights, learning what taking responsibilities means in their daily lives, helping our friends speak up when they are worn out or overloaded, and incorporating every aspect of their life by giving to the world the gift of self-actualization.

My work at IRI started out in this way especially when I started working with about 6 to 7 of their self-advocacy groups late in 2013 to teach self-advocacy, self-determination, and living an independent life. I have done so much for them so far including creating presentations, creating my self-advocacy board game, using my muppet “Max” (non-binary gender, multi-sensory, Autistic, 85 years old, Max is non-binary gender in appreciation of those friends who really are non-binary gender) from December 2010 when I bought them at Columbus Circle. I continuously build connections with not only all the individuals who are my peers, but with the staff who I can say are my peers too in the broader community.

I have earned their respect. I have helped in so many ways including the way they thought about re-writing a vision, mission, and values statements for their organization. I brought them to the next level of being able to guide the individuals they serve toward the person’s with disabilities self-determination.

Now I have self-direction services in which they were part of the help toward me achieving this for myself as I help their individuals. Although, my self-direction services is through Westchester Institute of Human Development, ARC of Rockland, and my 13 people and growing of my circle of support I create for myself.

What is self-determination?

Well, self-determination means something different for everyone. That’s the beauty of self-determination is that it is a definition that changes for each person’s own individuality. Some people need a balance of the medical model and social model while others need solely the social model of disability. Social model of disability is obviously the not so stigmatizing model. The social model is good for everyone to understand that they have a choice of whatever is good for them. This is what is called ‘person centered’ approach.

Social Model vs. Medical model

The medical model is not and never is ‘person centered’ because it states that the person is the problem and needs to be fixed or eradicated from society. It also is stigmatizing in many other ways by saying that the person is not human and a burden unless they conform or fix their ways to be like the mainstream ‘status quo’ of the society the individual belongs to.

Conforming can be in the way people move, make eye contact, quiet hands, or even speak with the same language as the masses do. The ‘status quo’ is not necessarily bad, it just means that everyone is standardizing the approach to communication, language, movement, hearing, sight, touch, and expressing oneself in the world. This is why the social model of disability is better!

Is this right or wrong? Well, it depends on what an individual wants from their life. Some people are fascinated with the status quo. But, what does the status quo even mean? What does it mean to be mainstream?

Communication is Key!

Some people or most people in society, expect immediate responses to their communication in an impromptu response through speaking through the mouth. However, any one who speaks too deviant from however the status quo mainstream people speak, is often shunned, ostracized, silenced, placed in institutions, and/or written off as not even human due to being seen as bad people by much of society. This is the reason why mainstream society and the majority individual non-disabled citizens of the world strive for perfection with their black and white thinking of what they deem the ‘perfect’ human being. This is not right, not fair, and does not allow diversity to thrive in the world.

Everyone is different and societies in this world need to remember diversity matters rather than pretending it does. Differences is what makes us human no matter who we are and what we do to achieve our successes in the world. If you meet one human being, you’ve only met one human being.

Appreciating and grateful for my connections I make and my family

IRI, CUNY SPS, JCC in Manhattan, ASAN, my connections I made from CAFETY, SANYS, the many peers I have met through the years especially since 2013, and of course my wonderful loving family have all helped and continuously help me in so many ways.

I have created an amazing network of people I can say I know and cherish every moment of my life as an amazing creative story that I make for myself. If it wasn’t for these people I have in my life, I would not been given a chance to embark on my own self-determination. Not only that I am now able to build my goal of finally becoming the person I always wanted to be. Ultimately, finding my voice and self even though it’s hard when being influenced by so many people I talk with in my interactions in the community. And, these people help find and give me my voice!

Detaching from other people’s conclusions to finding my Authentic Self

It’s difficult to detach from other people’s conclusions when I have thousands of people’s conclusions in my mind that confuses me. I am learning to detach each and every conclusion to formulate my own personal conclusions without forgetting any of these people either (meditation is the perfect grounding point for me). Everyone’s story and conclusions is important and unique to them. Though, my voice and authentic self is what counts to what I want for myself and what is good for me, nothing more. That is my self-determination!


“Turning Dreams Into Reality”

Happy Autism Acceptance Month that begins in 24 hours as April begins. Thank you for everything from everyone who helps me especially my family! It is my life now and what I want to do finally and guess what, I have not only my family supporting me, but so many others as well.

Emotions roll over us all the time, but it’s just a matter of staying a positive force in the world to become the wonderful person that we are with the spirit that lies within us…

Love is wonderful thing!

Now, listen to this song: (Almost Paradise by Mike Reno)

OUT, J