Much to Say

– and not just from me

I am writing this on-the-fly, directly into the blog program because I am going to turn off my editor for a minute. Here’s the deal, I’ve already said much about Ethan Saylor’s death. And believe it or not, I don’t know if I’d made this clear, but without the editor I will now.

I believe the Governor of Maryland is negligent in not demanding an independent investigation and I am angry that he used Ethan Saylor’s birthday to launch his committee, because I feel that he is side-stepping the fact that Ethan was murdered from excessive brutality that was not the result of lack of training. From my perspective it was the result of – at best – excessive force and misunderstanding of potential consequences and – at worst – a hate crime.  Training does not and will not solve either of these issues.

That said,

I am not opposed to additional training for our first responders.

There are many adults, and perhaps even more gaining into adulthood, that cannot communicate quickly and efficiently. Down syndrome is, in many case, relatively noticeable. However there are many people with no “noticeable” features that need a minute of patience and extra help. They may react in a surprising way when they are confused, and the rule of compliance may not come easily to them. If training means that first responders are reminded that all people are worthy of help and assistance and people need time to process requests and information whenever possible, then so be it. 

I am conflicted on how this training should look,

but I am not conflicted about Patti Saylor’s intention.

I am aware that integration into the community is not an overnight phenomena. The adults today are almost entirely the first generation of adults with disabilities who have learned to join the community and there is no reason this should stop when they reach 18 or 21.

I have not been thrilled with the bits and pieces of training seen thus far. I am hopeful that these first attempts will be countered by the actions of more self-advocates. I believe it is the self-advocates that will be the most important and beneficial component to change.

OK – That said – I have more to share today that is not about me. I know, shock, right?

Ethan’s Law

kickstarterThe real business today is to share a note from the director of the documentary Ethan’s Law, Edward Rhodes. Mr. Rhodes does not come to this community as a parent or caregiver, he comes as an artist with a mission. And for the record, in my book, that is as honorable place as any other to have on this project.  He shared his thoughts on the film and his hopes for it’s role in further training at The Road We’ve Shared blog here.

Good news – I turned back on my editor and deleted several words to instead
bring you Mr. Rhodes thoughts without further ado:

Hello readers, as you can imagine our excitement grows with every day closer to our deadline. As of today we are almost halfway to our five thousand dollar goal and have twenty-five days left on the clock.

This past week I was fortunate enough to watch Patti Saylor accept the honor of Advocate of the Year from the National Down’s Syndrome Society. The evening was bittersweet and full of reminders of the steps taken to transcend her son’s death.

Patti is by all regards a shining example of strength and endurance and shows no signs of fatigue as the marathon to create change in legislation presses onward. She made a point to acknowledge the support by the people that have helped push her along this journey. The “mommy bloggers” helped motivate Patti to look outward instead of inward and become an activist instead of a victim. Her goal, like ours is to help prevent another tragedy and convince the “powers at be” that training is necessary for the safe and affective resolution of conflicts involving people with special needs.

In other news this week I also interviewed Sheriff Jenkins of the Frederick Co. Sheriff department and Dr. Ochoa of Mount St. Mary’s. We were permitted to film a portion of the training being conducted for the Frederick County Sheriff’s department. Although it may seem a little late for some, in this case I believe “better late than never”. The Sheriff remains supportive of his officers involved in Ethan’s death and contends they did nothing wrong.  While most of us that have followed the incident closely may disagree, myself included. With the privilege of having read the investigative and coroner reports, I strongly disagree. As the months stretch on and the litigation process becomes more public it will become harder to deny the facts surrounding Ethan’s death.

This Friday I meet with Timothy Shriver and conducted maybe the most high profile interview of the project. His family’s support of those with special needs is unprecedented. I am already impressed with his candor, which I witnessed in January’s CIID (COMMUNITY INCLUSION OF INDIVIDUALS WITH INTELLECTUAL & DEVELOPMENTAL DISABILITIES) meeting. I strongly support his position as chair of the committee and believe he has the insight to make progress within the initiative while navigating the political waterways. It is obvious all members of the CIID committee have the interest of the community and individuals with specials needs in mind. But it takes a person with experience in both politics and the special needs community to be able to make the connection between legislation and special interest successful.

Unlike most other projects I’ve participated in, each day closer to conclusion breeds more and more excitement. Usually each day makes you a little more anxious about things like meeting a deadline, or criticism of the final product. This movie feels different. I feel so passionate that the end product will help bring change and simply can’t wait to see how people will appreciate Patti and focus on her efforts rather than the loss that preceded it. Soon her work and the work of the community that supports her will vindicate the loss her family has endured.  The goal is to pass the “Able act” and by this time next year all of this conjecture about Ethan’s death will be retrospective. And the interest will be realized that the fight was never to place blame or await a verdict but to create change that will protect the lives of others who for lack of better words cannot protect themselves.

I have one more piece of news from last week. An Angel investor who prefers to remain anonymous has promised to go dollar for dollar with anyone to help fund the remaining balance of the KickStarter campaign. It feels absolutely wonderful that someone supports my passion and believes in my abilities to make such a generous offer. It was a great birthday present to say the least. Now that I enter the third decade of life on this planet I feel blessed to have something to both look forward to and back on that I can be extremely proud of. I could go as far as to say I am in the process of realizing my dreams come true, because as long as I can remember all I ever wanted to do was something for the greater good. Along the way I made compromises and thought the psychic benefit of the little things might satisfy me. I realize now I was never going to be truly happy unless I took a chance and put myself on the line for something bigger than myself.

Please help this become bigger than us and show the world an example of heroism. I still need your help and every day I am closer to my deadline. At the time this article was written I have twenty-five days left on the clock and I am $2,603.00 short of the goal. No matter what I will finish the movie but I depend on your support to make it the best film possible.
– Edward Rhodes


OK friends, I shared this with you so you can now do with it what you want. I am going to support Mr. Rhodes. My correspondence with him has been brief and honest and I have many more questions, as you may as well.  One point that this movie will address more than any other is the silence. Silence is our biggest enemy when there is an injustice. If nothing more than to keep the conversation going, to show that this is not an incident, a unique situation or a person that should be “swept under the rug.” Ethan is our son and the world should see what happened.

As you can imagine, Edward Rhodes is super busy right now, as are we all. However, I plan to continue my correspondence with him even after the project is funded as I have many other questions, thoughts, concerns and, as you well know, I don’t generally shut up about it when I do.  You can comment here on your thoughts, you can contact me, or you can contact him directly through the kickstarter page.