More Than Kids

More Than Kids - ADA 29

The Americans with Disabilities Act was signed into law 29 years ago today. 

 

Seven years ago, I published a photo blog post. I also must have posted a column on the Epilepsy Foundation eCommunity site (I don't see an active link any more).

 

On this site, I posted on the 21st anniversary. I wrote, 

ADA Turns 21

President George Bush signed the Americans with Disabilities Act twenty one years ago. The ADA is often called the most important civil rights legislation of the last few decades. President Obama's Presidential Proclamation illustrates the legislation's popularity. Even while Democrats and Republicans argue about the country's economic future, a Democratic President will honor legislation signed by a Republican President.  

 

Today I searched through the Twitter feeds of the Presidential candidates. Some of the candidates mentioned the anniversary and some mentioned that it was important, but nobody released a plan for solving the problems. I think it was a missed opportunity. 

President George Bush signed the Americans with Disabilities Act twenty one years ago. The ADA is often called the most important civil rights legislation of the last few decades. President Obama's Presidential Proclamation illustrates the legislation's popularity. Even while Democrats and Republicans argue about the country's economic future, a Democratic President will honor legislation signed by a Republican President.  

2018 Epilepsy Foundation Northern California Gala Notes

The next installment of "Notes on a blog." This post is to my article titled Make Epilepsy Great Again.

 

For Father's Day this year, my daughter gave me the book, From Heartbreak to Wholeness "The Hero's Journey to Joy" by Kristine Carlson. I keep the book near my bed so that I can read a few pages before going to sleep. Even when I don't read the book, I feel better looking at the cover and reading the title. It is hopeful, especially compared to the Fitzgerald quote ("show me a hero and I'll write you a tragedy").

Epilepsy is not the only part of my life where I have experienced tragedy and heartbreak. Epilepsy just feels more conflicted... full of mixed messages. More recently, I have seen the term "End Epilepsy" gain popularity. I have no interest in this campaign, and I don't think that pharmaceutical companies want it either. If Big Pharma could end epilepsy, would they? Do medical professionals want to end epilepsy? The slogan sounds inspiring, but I wonder if it is slightly self-deceptive... perhaps Big Pharma started it as a distraction. Perhaps Upton Sinclair explained this conflict better when he said, "It is difficult to get a man to understand something, when his salary depends on him not understanding it." Sinclair died 50 years ago on 11/25/68.

I mentioned Taylor Swift and The Great Gatsby a couple time early. I just looked for the link about Taylor's fascination with Gatsby. I found this November 2017 Slate article. It's really thorough, although the writer uses a cheesy convention on the last line.  

I mentioned a few historical concepts, because I wanted to remind readers that it is easy to overlook the past. On one hand, epilepsy has been called the sacred disease. On the other hand, people with epilepsy have been killed, because they were thought to have been possessed by demons. The title Make Epilepsy Great Again was my first attempt to play with our desire to forget the problems of the past. Hercules was said to have epilepsy. Though Hercules was the original hero, he was also troubled. 

There is a television series called Show Me a Hero . It is about the American education system. It takes its name from the same quote I started my post.

One of our Presidents helped start an epilepsy colony. His wife had epilepsy. You can read a little about the Epilepsy Colony Thing. If you prefer listening, Molly McCully Brown spoke to NPR's Terry Gross about a colony for "epileptics and feebleminded." The colonies were created for our benefit, although I don't think people with epilepsy invented colonies.

For a longer view of the history of England, visit the Society of Epilepsy.

The invention of the EEG is not straightforward. One article mentions the "discovery" and another mentions the year Hans Berger "invented" it. One year is 1925 and the other is 1929. Either way, the EEG was not widely used during the Roaring 20's. Medication was not widely available throughout the world; where available, choices were limited.

Hitler's extermination of people with epilepsy was part of a larger effort to kill people deemed unworthy.  Sterilization was also part of Hitler's Germany, though not limited to Germany. More sources.

I have mentioned Cameron Hollopeter several times in various places. If you are unfamiliar with the story, you can find background here.https://www.cbsnews.com/news/bystander-pulls-off-daring-subway-rescue/

I have known Miles from the local chapter. I met Chanda in Washington, D.C. or San Francisco. I have photographed her in both places around 2012. I have photographed Miles nearly every year since before that.

I referenced an older post about living in Oz. I almost included the following on the other post. I found this one from 2015. It has a similar message to the current post. I wrote, " There is something unreal and dreamlike. Those of us with epilepsy are expected to remain invisible AND encouraged to “talk about it.” 

If I had been more present, I would have photographed the event differently. I probably would have planned to take photographs that emulated the period. The best example would have likely been Edward Steichen.

NOTE: This post was last updated on 11/29, as was the post on Bryan Farley photography dot com

The Epilepsy Photographer

Sometimes I forget that I have epilepsy, but every September I remember my first seizure. I was in high school doing well academically and socially. I probably would have attended college immediately after graduation. Instead I took off a year before attending UCSB.

Sometimes I also forget that I have been photographing epilepsy events for more than ten years. If anyone is an epilepsy photographer, I guess I am that person.

I was more of an epilepsy writer for several years too, but the evidence has almost disappeared. The articles, videos and images are now on a hidden Epilepsy Foundation site, although I found a link with a partial story on the Living Well with Epilepsy site.

 

Sometimes I also forget that I am a decent photographer. My son Mason says that I am not as good as the "decisive moment guy, but Mason likes my pictures. (The decisive moment guy, Henri Cartier-Bresson, is often considered history's best photographer, so I don't mind the comparison.) On my personal website, I have a photo gallery collection at www TheEpilepsyPhotographer dot com

On my photography blog, I have some posts with pictures. Those can be found here. On my older blog, I also collected epilepsy related posts on my More Than Kids blog. Those can be viewed here.

 

 

 

Running from our Past - with Epilepsy

On Purple Day this year, I attended the First Annual Seize the Moment 5k Run/Walk in Sacramento. It was a color run with a separate race. I published a photo blog on my other site. My kids went with me.

There are pictures from the run too.

My kids have learned about my history of running and my history with epilepsy. They have also learned about our country's history of discrimination towards people with epilepsy. My kids know it, but they do not quite understand it. My kids do not understand why someone like me would be considered less than other people. My kids do not understand why other people with epilepsy and disabilities are less than.

Last week, NPR's Fresh Air replayed an episode about forced sterilizations and the 1924 Immigration Act.  We listened to the episode together. We discussed the 1924 Immigration Act and the connection to The Holocaust. We also discussed how forced sterilization impacted families with epilepsy. My kids understood this impact, even if they didn't understand the reason behind the discrimination. 

I still find it difficult to understand how our government identified people to be segregated and then forced sterilization on those groups. I also find it difficult to believe that another country "practiced" mass extermination on people like me before beginning the events that are understood to be The Holocaust. I guess that explains why I still struggle to believe what happens today. Some of the beliefs still exist. We are segregated. We are seen as less. We are allowed to die, and when we do, it is not as important. Our lives do not matter as much as some lives.

When people do not believe that marginalization happens, I probably become frustrated. I am still surprised, so I understand. I am surprised each time. Small events might seem like wishful thinking, but these events help protect some of us from the outside world that doesn't see us. 

 

Pawn Stars 2016 Epilepsy Gala Notes

This post accompanies my photography blog post at Bryan Farley Photography titled "Pop Television and Epilepsy Heroes." These images did not make the final photography gallery for the 2016 Epilepsy Foundation of Northern California Candlelight Gala.

I finished the other post with a reference to a future "Cameron Code." Cameron Hollopeter was a young man with epilepsy who fell onto subway tracks after having a seizure. According to several media reports, there were several people who allowed Cameron to stumble onto the tracks before he fell. Fortunately, Wesley Autrey risked his own life to save Cameron. In the other post, I didn't mention Autrey by name, because he is not the story... he is not my story. If I were to write the story about what happened to Cameron, I would have also interviewed the other bystanders who watched Cameron. I would have asked them why they allowed him to die. I would have wanted to know why more people created the unnecessary situation that led to Autrey risking his life.

I also intentionally omitted Autrey's name, because I was playing with words. Autry/Autrey and Cowboy Code/Cameron Code.

Gene Autry created the Cowboy Code. I knew about Autry, because he was the California Angels owner. (The Angels' retired #26 in his honor.) He also sang "Rudolph the Red-nosed Reindeer" (and Frosty the Snowman and Here Comes Santa Claus). Older folks remember Autry from his radio and rodeo career. Autry is the only person who has five stars on the Hollywood Walk of Fame.

The Cowboy Code is surprisingly enlightened, especially considering our current political discourse, and I thought that people with epilepsy could find something similar. We could find our own heroes. We could tell our own stories. We could borrow #6 from Autry who said "(The Cowboy) must help people in distress." We could support each other and stand for each other above any political affiliation. Perhaps we could respect each other's privacy and right to remain hidden too. We can reward each other. We can create our own walk of stars.

I have belonged to many organizations and seen many awards presentations. I am tired of seeing people who don't have epilepsy being called My Epilepsy Hero... when there are too many of us with epilepsy living in the shadows. When we tell our stories about all the years when we did not tell our stories, we are indicating that discrimination exists today. We lose jobs, friends, relationships, and other opportunities because of perceptions that continue today.

I don't think people with epilepsy (and other people with disabilities) know how to exist in our country. I think that we are still trying to find our way... at least I am. I mentioned in the other post, that real life feels unreal (and it's not just the medication.) Our world seeks integrity and vulnerability. I hear that people want authenticity, but these characteristics do not seem to be rewarded even when they are a job requirement.

Some last thoughts about the previous post: I had considered using a different Andy Warhol quote about 15 minutes or words from a Travis Tritt song that mentioned "15 years ago," but I chose the quote about reality because the full paragraph has a richer context. Andy discusses how he felt after he was shot and I wanted to include something about how reality shifts after trauma. I also liked how his pop reference worked with the reality tv star's appearance. I also love the simple, but powerful message of Tritt's "It's A Great Day To Be Alive." While I am frustrated about the struggle, I am grateful that I am still alive and able to do so.

The two previous photography blog posts included something about 15 years, but it would have been forced this time. So would have using #26, but I often think about it. 

I also considered expanding on the Katie Couric connection. If I could have found her initial audio news broadcast, I might have added more, but I couldn't find it. I am grateful that Couric covered the subway story, because I really felt that someone cared enough to risk their life for me. This was a few months after my father's suicide, so it was especially timely.

Couric's appearance on Pawn Star's is also interesting for two other reasons. When I met Brad Paisley, we discussed Mark Twain. I thought it was unreal that he mentioned Twain, but I had quoted Twain in other posts too. (The entire Paisley meeting felt unreal.) In the Pawn Stars episode, Harrison's son "pretends" to confuse Couric with two other stars named Katie. I have face blindness (prosopagnosia). I can't recognize Katie Perry or Katie Couric either... at least not by looking at their face.