Good evening Ladies and Gentelmen. I bring news to you all that I do now have a tumblr. The difference between the tumblr and this blog is illustrated on the tumblr but for all extensive purposes, all you need to know is that the tumblr is used for my “echolaic musings” whereas this blog is used for my more dense solidified thoughts. The link to the tumblr is http://echolalicmusings.tumblr.com
My father made a very valid comment in the about section as to “Wait and Hope” being too passive for my purposes of promoting action within the Autism community. Well, for starters and as mentioned in the previous post, I’m kind of going through a Count of Monte Cristo phase right now. Or rather, I’ve always been fascinated by the story and after an excellent conversation with my stepmother the other night, Here are some things that came out of the conversation that I’ll tie first and foremost to the book itself and then tie why it has impacted me greatly and what that means in the face of what I’m trying to accomplish.
Edmond Dantès and I have a surprising about in common. On the first most basic level, he and I in our youths were truly happy in our own worlds. He was promoted to become a captain of a ship and betrothed to a beautiful woman and I was simply a child enjoying the benefits of the age I was in and then both of us were marked out as something that is seen as a negative connotation. He falsely being accused of being a Bonapartist in an immediate post-Bonaparte world and me being diagnosed with Autism. Then, he and I were trapped in our own prisons,both for almost 20 years, his literal in the Chateau D’if and mine in a world where I was far too shy and too scared of rejection or being made fun of for me to share the nature of my diagnosis and all of its implications to people . And then, both of us have come across a singularly great opportunity that would redefine our lives. His being through the acquisition of the near limitless treasure hidden on the island of Monte Cristo and mine being the gift of a non-awkward context to be truly open about myself through the discovery of organizations like the Autistic Self-Advocacy Network (ASAN) and then the opportunity to speak at Kennedy Krieger’s Center for Autism and Related Disorders. Both of these opportunities opened the doors for us to truly reconcile with our pasts, namely the tragedies that accompany both our pasts.
Although the story itself is mostly known about exacting revenge upon the people who put him in the Chateau D’if, Edmond Dantès now at this point in the story referred to as The Count of Monte Cristo, he does a fair amount of good for people, especially those who believed in his innocence and were kind to him before his release and I echo that kindness as well, especially for those who stuck by me in my times of need.
However, he and I also have a feeling for setting things right, his through his revenge against those who put him unjustly in prison and mine recently through coming out and speaking and fighting for a cause against powerful social institutions, that try to keep me trapped to some degree and mark me out as someone not deserving basic human respect and dignity. In that aspect we obviously differ. But on the larger level, we are going through very similar journeys of redemption and hope for a better future than what our pasts would have dictated for us.
Now I can begin to address the question of “Why ‘Wait and Hope?” Waiting, though it may seem like a passive idea, can also be a very active one too. I personally have to establish with people who I am very early on, especially with the nature of my diagnosis and all I can do is simply ‘wait and hope’ to see how they may or may not react. Hope though is truly the defining thing though, as I have ideas for my future as to help define what exactly is the purpose of my life now as it stands and then on a more basic level, what exactly is the purpose of this blog.
While I apologize for taking more than a week to put up this third entry, especially since I said it would be done in a matter of days/ less than a week, I wanted to give this idea the full justice it deserves. The purpose of this blog is to start dialogue where there isn’t enough. As mentioned in the previous entry, I do NOT represent my entire community. There are those, even within my Autism club at IU who differ greatly in opinions on just about everything that I do. However, the purpose again is to promote dialogue and get the ball rolling (as my dad often says) on this idea of larger communication in our community.
I am well aware of organizations like ASAN, GRASP, and Wrong Planet, but they must also keep in mind that some of these are online communities and I believe that it is time to meet face to face with different institutions like Autism Speaks, and begin speaking up at things like the Interagency Autism Coordinating Committee where we can truly speak for ourselves in person and truly be heard and truly make a difference. I am proud of people like Ari Ne’eman who have the boldness to stand up against organizations who tend to view us as a burden to society like Autism Speaks and then, I believe he deserves kudos (for lack of a better term) and has reaped the benefits of the huge difference he has made in the Autism community. In my opinion, the proper context to speak is everything and with that context to speak comes dialogue and dialogue is what we need right now to influence the right people so that we may have an effective change in how the world views the condition known as Autism.
My stepmother the other night proposed the idea of a Q&A section to which I said the blog is not “ripe” enough yet for such an idea but when it does come around I will ask a variety of questions one of which I kind of know the full story of and that is “What exactly is Normal?” to which the answer will be inconclusive and then the idea will follow that we are all truly different from one another and should refrain from holding people to such an abstract idea such as “normal” and then the idea will come about that despite our differences, what do we all have in common and that is the idea of we must pursue things such as happiness through doing things that have a very strong meaning in our lives and a lot of the time, those ideas which have strong meaning in our lives involve helping each other achieve their best. That is what I intend to do over the course of my life and the blog is really one of the steps for doing that. We must all pursue in life what is truly life-defining to us on our own terms and though we will hit roadblocks along the way, we must remain persistent and consistent in who we are and live our lives with integrity.
In the words of Alexandre Dumas, There is neither happiness nor unhappiness in this world; there is only the comparison of one state with another. Only a man who has felt ultimate despair is capable of feeling ultimate bliss. It is necessary to have wished for death in order to know how good it is to live. Until the day when God will deign to reveal the future to man, all human wisdom is summed up in these two words,–Wait and Hope.”
Again, I humbly thank you for your time, and have a good day.
P.S. I’ll try to make my posts more frequent. Again, my apologies for taking so long.
Its kind of funny actually; I don’t know any french at all. Two of my closest friends to whom I will make countless references throughout the remainder of this blog’s existence are borderline fluent in French and so they have influenced this title along with my current borderline obsession with Alexandre Dumas, namely his magnum opus, Le Comte de Monte Cristo.
But anyways, It is midnight and I indicated in my previous post that I would post some immediate pressing thoughts in the wake of ”Communication Shutdown Day” and address where I stand on certain issues in the Autism world.
First and foremost, I honestly for me and my case, am against person-first language because I don’t have Autism/Asperger’s the way others may have cancer and the like. Feel free to disagree as you see fit but this is how I honestly see it. Secondly, Autism is not seperate from the individual; It cannot be pulled apart from the individual at the press of a magic button.
Thirdly, We, as in those of us on the Spectrum, need to start speaking for ourselves so organizations like Autism Speaks don’t speak for us. This then immediately begs the question that is “What is my opinion of Autism Speaks?” Here is my response; while I do admire their willingness to research and to better understand the condition, it is not for the sake of bridging the gaps we as individuals have with society; it is for the sake of what will ultimately be a “cure” for Autism and seeing that Autism has and will frankly in my opinion will never have a known cure.
That leads me to assume that within the next 15-30 years as research goes down the line, that I fear that they could possibly sponsor eugenics, which frankly frightens the hell out of me because I would like my kids and future generations of ASD people to have the right to exist first and foremost and then be accepted into society which should really be the first goal of Autism Speaks in my opinion.They have yet to have any Autistic representation on their Board of Directors.
Who knows? Maybe they’ll ask me one day. But anyways, acceptance is what we are really looking for from society. I do believe “Autistic Rights are Human Rights” and do find solidarity with other Human Rights movements as we need to move towards a society where differences are more accepted. Expect a more personal entry tomorrow or later in the week. Have a grand evening.
Like the title of the post says, I bid you all a very good evening tonight and would wish to thank you in advance for your time as I’m sure it is precious.
With those of you unfamiliar with who I am, feel free to look at my blog “about” section. And now that we have some brief formalities out of the way, I wish to discuss why I chose this day to start a blog. Today is November 1st, also known as “All Saints Day” but there is also another name for this day apparently and that is (for the remainder of the 40 odd minutes of November 1st for those on EST) “Communication Shutdown Day” which you can google as you see fit. While I do admire their willingness to promote Autism Awareness, it should not be through the cutting down of communication. Instead, people should take the initiative that I have and begin communicating for ourselves.
We have a voice if you’re willing to listen to us.
Or namely, I do and while I cannot say I authoritatively represent the entire Autistic community, I do say that I have been given the gift and opportunity of publicly speaking about what my life is like for various groups like Kennedy Krieger Institute or more specifically, their 10TH Annual Center for Autism and Related Disorders Conference and so I know the influence that I may potentially have with people and would like to use that potential influence wisely for the sake of all those I truly admire within my Autistic community.
Over the course of time, I intend to give you little bits of where I came from both literally and metaphorically in terms of how I grew up both in the environment I have grown up in and then how I myself grew socially/mentally/spiritually/whatever you want to call it. Come midnight tonight, I intend to post a little brief introduction not necessarily about my life story but to answer right away where I stand on certain issues pertaining to how I view the overall issue of Autism in today’s world.