This day is important to me as an Autistic and Disabled person. I have so many emotions from why I believe in this day of mourning vigil for my many peers in the disability community. I have a strong supportive network I built up my whole life between the family I was born into (though sometimes it seems they may not understand my own being Autistic or Disabled, but do love them), my friends I have made all throughout the years, some of you are here today, some of you or most of you are not.
My fight in me to advocate and change the world through my activism has been very slow, too slow at times, because there is a lot of work to be done to get the world to understand humanity, care for one another, and to relate to each other. I know I am not a perfect person, in fact, I am far from perfect, I have made many mistakes in my life due to the anxieties I felt through the years. It has made me learn what is more constructible to do and what I can do to make things better.
I am 35 years old now. So, I will probably continue to make mistakes, but hopefully not as impacting as I have done in the past which made me feel regret and despair for doing it. As we move forward in our lives, we need to remember those people in the disability community where their lives were not very supported, not very happy, and were often killed by the very same people who should have been supporting them all along, parents and caregivers.
Looking at my life, I am lucky that whatever I put into all my relationships, I put my all into them because I care so deeply. This has been a mistake sometimes because not everyone thinks like the way I think. I have been hurt in the past by people I put my all into that really either didn’t care about me or didn’t even want to connect to me at all.
I have been through a lot in my life dealing with this issue I have. Not being able to know that not everyone is going to want to feel what I feel and not everyone will care, and not everyone is supportive, can be frustrating to a person like myself.
As an Autistic person, I feel that it’s so important to know and find the people who will listen are from the supportive network I have now. I created this supportive network for myself from those who want to be in it and dismiss those who don’t want to be in it. I have known as well that whatever I put into the world, comes right back at me, that’s the way karma works. If I continue to bring good into the world, the world will be good to me. There are many people I met in the past whose karma gave me something negative. It’s time to give karma back in a good way to the supportive network I have built all along.
The people I have in my life who care a good deal have given me so much good for me. Everyone in my support network gives me good in a different way individually. I need to continue to forget about people I have in my life who gave me bad and made me feel bad.
Back in 2008, I was sitting in Starbucks in Grand Central when I came into contact with a woman of many bags and a heavy (mostly artistic) trench coat. She was sitting down next to the electrical outlet so I can charge my phone at that moment. My phone was about to run out of battery. She said I can use the outlet and leave my phone on the table. We began talking a lot. She seemed very nice. She started at some point mentioning the feelings she began to have as she was regaining her strength as a psychic.
This woman told me how I am, and began telling me things about me, that I didn’t even tell her about previously. The psychic at Grand Central, even knew that I have been struggling to find myself and my voice. She said that the career I was doing was nto quite exactly what I was intended, and that she felt I will be finding it soon, but not knowing when. She also told me how much of a an Artist I am, but have been denying this for much of my life. She told me how I do write, but art is my main talent.
She felt the career I chose at that moment (Ultrasound) was not really exactly for me. She felt I can do a lot more. Just before I hopped on the train to tarrytown, she ran over to me to say one last thing to me, She told me how I going to have a small, but minor surgery that year. By the end of the year, I did have surgery to remove a small cancerous tumor on my tail of my pancreas which also led me to have my spleen completely removed. I am left spleenless to this day.
Two years later, I had open heart surgery for an aneurysm and aortic valve repair too. This psychic even said to me that that was an arranged meeting with no payment. Ever since then, I started to wonder when I will see her again. She said that the next one will be an arranged reading that is longer and different. I have been realizing my spirituality a lot since then. The out of body experiences I have gotten, and other spiritual things as well I experience, have drawn me closer to the missions I need to fulfill.
My life has been turning around for the past few years. I have been impressing my support network on this transformation I made for myself. My life has really been much more than I have ever done, but I still have a lot more things to do to finalize the transformation. I am officially at the CUNY School of Professional Studies now for Disability Studies in graduate school. I was finally able to start the program after getting in last June. I am even a Kennedy Fellow.
I am pursuing my dreams to what I need to do for myself now. It’s been tough for my family because I need to be supported financially by them still. I only work part time for now, but need to travel to queens for the job. As an Autistic person, this can be a challenge for me. However, the job in itself is rewarding for me. I am a Self-Advocacy Liaison. I think about this song as I listen from the movie Footloose entitled Almost Paradise, by Mike Reno and Ann Wilson. This song really touches my heart and soul so much especially hearing these words:
“I feared my heart would beat in secrecy, I faced the nights alone, on, how I would have known, that’s all my life only I needed you.”
(as I think of these words from the song, I think about the need of how I want to be an ‘angel’ like how the psychic in 2008 said I would become to achieve my missions. She said something scary to me though, how I am going to live a long life into my 90’s. It was scary because at that moment I was in my late 20’s. I was scared because I knew I had a lot more to do, and back in 2008, I wasn’t even doing what I was supposed to be doing. I was though, doing things through volunteering and writing, but in the past, few years I began doing a lot more and continuing on this path working with my peers in the disability community to change the world.
It is why I started reaching out more to do these vigils for Disability rights organizations like the Autistic Self-Advocacy Network. Life can be tricky sometimes, it can be overwhelming, it can cause for anxiety, and it can be hurting. But, we need to know how to resolve the pain of the hurt, the overwhelming anxiety, and finding our moment of who we are to be happy. We are all good people, but we need to engage our dreams and reality to live and be who are no matter what. It’s something we all need to think about: what is normality? However, most importantly what is our own normal and allowing ourselves to be that normal.
Sometimes it can be anxiety ridden, when we don’t have our normal of what makes up a person a reality. It is why those who were supposed to be supporting them have killed many peers in the disability community. It is why we mourn even Garnett Spears who had this unfortunate thing happen to him by his own support, who his mother allegedly, who needed to support him. Life can be tricky as well when especially why many parent advocates who want their children to be whatever the parents want, is not making their children celebrate who they are. Many of you are probably thinking about this normal that Galton created years before with the Bell curve.
We need to remember normal is what people choose individually with what works for them. Otherwise the person may be influencing about what they think the other person needs to be. This is challenging for many to think about what is termed self-determination. By thinking about self-determination , the individual needs to decide for themselves what works best for them. If they choose medication, that becomes their choice, if they choose other ways instead that’s also their choice, and if they choose both methods, that is also the choice of any individual citizen of the world. Everyone chooses their own methods to maintain the normal way of being for them individually and we all learn what works best for us. This is self-determination to be able to get the individual to recognize the things that work for them. Medications are a personal choice, not a professionals or a parents choice to make.
Ed Roberts who is the father of the Disabiilty rights movement talked often in his speeches that led to the independent living movement. Wolfenberger often lectured about this too. It is why our society has begun to move in the right direction, although medicine has ben still influencing many parents and professionals to not enable individuals choices.
Parents and caregivers need to always remember to preserve love, understanding, and acceptance for everyone they are needing to take care of and love for life. Thank you and let’s remember these tragedies of the victims of these people with disabilities who were killed by parents and caregivers. Remember these word:
“Nothing about us, without us!!!!”
It will end with a poem I wrote:
Love is Passion
I love, I care,
I urge you all
To do the same.
Give me a hug,
Give you a hug,
Give the people around you a hug,
But most importantly give yourself
A hug every day
Looking into the mirror to say to yourself:
“I love you! I will always love you and I will never stop loving you and will for the rest of my life”
Have been quite busy with Graduate school at CUNY School of Professional Studies for Disability studies!!
Sorry I haven’t posted in a while, but I will be posted soon the new BANNER for the Autistic Artistic Carnival 2015 on June 18 of this year for Drive Mom Crazy Blog’s 6th annual online event for Autistic Pride day!!!