As my mind gets out of constant planning mode, and back into the everyday groove, I wanted to take a moment and share a few thoughts on last weekend’s festivities.
Why would you plan an event to honor Ethan at a movie theater of all places?
It’s a valid question. Since Ethan’s death, movie theaters have become traumascapes – places that trigger anxiety and depression – for many people, myself included.
All too often the Down syndrome community specifically, and the disability community in general, are left out of important political debates. We are typically impacted by the same civil rights issues as other minority groups, sometimes even more so because of the intersectionality of disadvantage. The problem is, the disability perspective doesn’t usually get nearly as much press. Continue reading Making Others See – Politics in the Down Syndrome Community
We are excited to announce that The Road We’ve Shared and The International Down Syndrome Coalition (IDSC) are hosting the first annual Ethan Saylor Memorial Film Festival!
For today we literally went to the source and asked the director Edward Rhodes a few questions. Continue reading Ethan’s Law Saturday – Interview with Edward Rhodes
There is no shortage of opportunities for us to help create change in our world today. We all have our reasons for why we choose to support (or not) a particular issue. When it comes to advocacy, we are usually motivated by causes we identify with. If we can picture ourselves or our loved ones being affected by a certain problem, we’re more likely to invest our own time and energy to fix it. What about the issues that we don’t allow ourselves to connect with? Who fights to fix the problems most of us just don’t want to acknowledge?
The first month of the year. New beginnings. Resolutions. Reminders….
January is a month like no other here on The Road. It’s brings a mix of emotions. Some are still celebrating the holidays; some struggle with feelings of loss and pain.
Chambersburg, Pennsylvania is less than an hour’s drive from Frederick, Maryland – the place where Ethan Saylor was killed in January, 2013.
In Chambersburg, on September 9, 2010, another from our community was taken from his family.
His name was Timothy Smith.
Like Ethan, he died at the hands of someone whose job was to help.
Like Ethan, he died face down on the floor and restrained.
The manner of death was also ruled as homicide by asphyxiation.
Like Ethan’s sister Emma, Tim’s sister, Becki feared what her brother’s death meant to those of us left behind:
“What I want is for my brother’s death not to be in vain,” Boor said. “There has to be some sort of mandated training for these people.
“The important thing is it doesn’t happen to anybody else,” she said.
Unfortunately, Tim Smith’s death did not become public knowledge within the Down syndrome community like Ethan’s has.
It should have.
Last week an article in the news prompted me to consider what it might be like to live in a group home. This week, another article crossed my path that made me look beyond my own feelings and think about the job required by members of a grand jury who happen to hear cases involving deaths in police custody.
This week has been one of well-earned celebration and thoughtful reflection on the 25th anniversary of the passage of the Americans with Disabilities Act. So far I’ve been listening from the edges, reluctant to put my 2 cents in, but today I was inspired by two things: a White House event and an old opinion piece. I think I’ve finally got an appropriate mix of “jaded by history” and cautious optimism to write my own perspective with some kind of balance.
Yesterday I wrote a response piece about sharing a parent’s perspective on social media. Today I was excited to change gears and listen to some of today’s top disability advocates talk about their experiences. The honorees of the White House Champions of Change – Disability Advocates Across Generations did not disappoint. Almost immediately after the speeches ended, I found Andrew Pulrang’s post to his column Disability Thinking called “I Was So Young.” Now, I’m ready