Tag Archives: autism acceptance month

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

Let’s Give Everyone Their Chance For their Own Success!

Being Disabled is not the same as being able. It’s hard dealing with people who just don’t understand us as being a part of the Disability community. I have met many people who look at me like I am an Able-bodied person, but don’t realize the many things that disable me from the rest of society. Being Autistic has it’s many gifts for me, but I still am disabled by society’s standards. I am very capable of doing the many things like everyone else, but much of society does not understand how to accommodate me. For example, there are different ways I get overloaded and overstimulated that I get very frustrated with and angry because the way society acts. If many people realized it, they could change their perception of how to act.

Everyone is capable of doing whatever they know they can do, but for some reason their is a disconnect between Able-bodied people and the Disabled. Whether the person is on the Autistic spectrum, has Cerebral Palsy, has Down’s Syndrome, is physically handicapped, has a mental health condition, has a rare illness that disables them from society, blind, deaf, etc. People need to remember whether the person is visibly disabled or invisibly disabled, everyone has right to their personal accommodation from the rest of society to do what they love to do.

There is no reason why a Disabled person should be left in the dark by themselves to be pitied or placed in Residential Treatment Placement Centers or Treated differently among the Healthcare system because the rest of society does not understand us. These are unacceptable ways to treat anyone, so why is society always thinking of using pity and torture in healthcare for people with disabilities. It really is very unfair and unconscionable for any Human being to be treated in such a fashion. For instance, just because someone is Autistic does not mean they need constant supervision, but it does not mean we don’t need supervision at all like everyone else. Society does not understand Disability culture, in addition to not being very concrete with Autistics.

Society is too overwhelming for us as a result, where we become very angry, confused, and frustrated because of it. Much of society still thinks that organizations like Autism Speaks will have all the answers and the mainstream media thinks they have the answers too. Instead of seeking answers from anyone, seek answers from those people who are struggling with society; the people with disabilities themselves! There are some Disabled people who may seem Neurotypical, but really are very much disabled themselves. You can’t walk in other shoes until you have experienced what a Disabled person experiences every day from our unique way of being in this so-called Able-bodied/Neurotypical world. Many people just don’t understand and think that they can talk down at us, that we need constant supervision, and that we need constant attention. However, disability is a part of humanity!!!

No one can discover their own self-determination and taking responsibility if the society’s communities does not understand everyone. Self-determination is very important and being included in conversations with the rest of society who talks about us is even more important. Society is overlooking the many factors of what it means for any one to be successful. Success does not mean making a lot of money. Success just means working hard to learning to build our own necessities to live our life and having our own self-worth to just be who we are. In the every end to self-determination, anyone reaps their rewards, with money, but not before the end.

I have found that there are too many professionals and many other people working to help people with disabilities who just don’t understand how to physically and mentally be there for any of us. As being a part of the subcategory, in the Autistic community, which is very broad and diverse of people in the world, many people seem to not understand us at all even a lot of professionals. This is very sad!!! Though, many people are learning lately, there is still much more learning, accepting us, and understanding about autism and disability that everyone needs to know in order to create a better society.

As we are in the middle of March, we are almost beginning Autism Acceptance Month in April, which means we are 3 and a half months until Autistic Pride Day in June. I thank many people who are beginning to learn or are learning, but I think society still has a long road of learning and understanding until they can begin accepting. Much of society is still not very concrete, not very understanding, and certainly not very accepting of Human diversity of what people can do for themselves where any one can take ownership of who they are, building their life.

There are many people in society who just don’t think that Disabled people can be included, have their own voice, and strive for their own success. Some people, but not all, who do take on people with disabilities including Autistic people, use some people in the disability community as a Token, because they want us to spread their word of pity in order to be called an inspiration to us all. This is not right and not fair! However, much of society needs to learn that everyone can be successful in what they know they want to do, can have a supportive network of people like anyone else to live life, and be independent when we need to be.

Stay true to yourself and always remember that no matter what we all our living as Human beings in the vast Human spectrum!!

OUT, J