Why I March: One Voice Can Make a Difference

We watched Peanut Butter Falcon on Netflix over Christmas vacation.  The amusing, emotionally touching movie is a coming of age story starring a Down’s Syndrome young man (Played by Zack Gottsagen).  Another young man with Down’s Syndrome is featured in Stumptown a television crime drama. Paralleling Falcon, Ansel Parisos (Played by Cole Sibus) is struggling with how to live as a young adult in Portland.  Both of these shows are remarkable because individuals with Down’s Syndrome staring in major television roles would have seemed an impossibility thirty years ago.

My first job out of graduate school (1978) was director of the Wyoming ARC/Developmental Disability Council.   The Education for All Handicapped Children’s Act was passed in 1975.  The purpose of the federal law was to insure a public school education was provided to all handicapped children. We had a lot of trouble in Wyoming getting schools to accept disabled children into the classroom. Parents didn’t know they had rights to insist the schools provide services. I remember speaking to the Wyoming Appropriations Committee about the law and having the Chair of the committee interrupt me and say, “These kids are like Angus in among the Herefords.  If we had any of these kids, we would see them and we just don’t.”

I was young, feisty and full of energy. That comment made me furious. I thought if you want to see handicapped children than I will make sure we go out and identify them.  The Developmental Disabilities Council provided a grant to the University of Wyoming to conduct screening clinics in Wyoming’s small rural communities that summer.  The teams identified more than 650 preschool children who were in need of special education services.  There is no voice more passionate or pervasive than a parent who is told their child needs services but the legislature is too miserly to fund the services.  Believe me, the Chair of the Appropriations heard from those parents.

During this period, we were trying to fund early intervention preschools and adult work programs all across the state. We had a statewide funding formula which  cost millions of dollars.  Oil-rich Wyoming coffers could certainly afford to pay for these programs but conservative legislators were not convinced. We had the votes in the House because the Speaker of the House, a very conservative Republican was married to a special education teacher.  He recognized the need.  But we did not have the votes in the Senate.

I worked phone lines every day and every night.  I wasn’t calling legislators.  I was calling parents to call their Senator(s) and asked him to vote yes.  The day of the vote the Senate gallery was packed with parents and children.  The votes were tallied. The yes/no’s flashed up on the screen.  We were one vote short.  The bill was going to die.  I could feel the disappointment of the parents squeezing my heart.  One Senator from Newcastle, Wyoming, a tiny town in Northeast Wyoming stood up.  You could hear a pin drop at that moment. He changed his vote to a yes.  He said when he made the change, “I cannot go home and face my constituents if this bill dies.  Wyoming needs to serve the developmentally disabled.”  The gallery went wild. with applause and cheering.

Over thirty years later, handicapped children who had access to early intervention services are moving into our communities, working in our businesses, starring in television shows and movies.  They’re showing us that advocacy work on the side of justice pays off.

The Women’s March is this weekend.  I march in principle.  Black, white, Hispanic, Native American, yellow, male, female, LGBTQ-A, handicapped, old, young; we all deserve an equal chance to succeed in this great country.  We are a country where one person’s voice/vote can still make a difference.

 

Depression, my experience with deep darkness

In 1988, “Gorillas in the Mist” was a big hit. I went with my boyfriend, now husband-Pete, and our friends, Teri and Jack. The movie is the true story of naturalist Dian Essey, protector of hunted gorillas. Blood is featured prominently throughout as gorillas are hunted for cash, gorgeous animals with huge hearts attacked for no reason, their hands sold as ash trays. Essey lived and died among these rare creatures.  The last scene is especially bloody. Essey’s throat is cut. Viewers see the knife slice and blood dripping from her neck. Her assailant is never identified.

As we stood up to leave the movie, I realized I could not speak. Unbeknownst to me, the movie had touched some hidden well-spring releasing a huge surge of darkness that engulfed my senses. The only two bright spots were: 1. I knew something was terribly wrong and 2. I was surrounded by supportive friends. By morning I was able to talk but dark shadows were still hovering like ghostly cobwebs in the corners of my mind. I would not wish that catatonic blackness on anyone. I understand some people can’t surface on their own towards the glimmering light of reality as I had. Trapped in that blackness for a significant period of time, I would find the experience unnerving, unbearable and ultimately unlivable.

While the initial depressive episode was almost 30 years ago, I was reminded of the experience this week while visiting Wyoming friends in Colorado and Arizona. While I was in Colorado, my friends Teri and Jack drove down from Cheyenne to see me. We laughed about our many shared good times, i.e. Like when their cat, Tiger, stole the pork roast, bigger than he off the table as we were sitting done to eat. We don’t talk about how I couldn’t get to their wedding in Jackson even though Pete was the best man because I was struggling to keep the darkness at bay and wouldn’t travel for an extended period of time. I had lunch in Phoenix with my dear friend, Holly. During my mental health struggles I would camp out on Holly’s couch for the night to make sure I wasn’t alone. Excellent counseling, medication, funds to pay for it, and  a strong support system of friends helped sweep my blackness away though I still watch for triggers, such as no depressing movies. I am always thankful for the light.

I have been planning a spring break trip to California for my daughter and her friends to tour universities the last couple of weeks. She wants to go because her brother and his friend made the trek with my sister and I six years ago. The  circumstances of that trip were very different than the one we are contemplating now. When I planned the trip in 2011, I didn’t know the challenges we would face. The week we were to leave I received a call from the friend’s father. He told me his wife had killed herself the night before while the family was in the house. I told him we would the cancel the trip but he insisted we go.

Right after the mom’s funeral in a Boise Episcopal church filled with Juniors in high school, we started out to California. We wound our way down the California coast, touring Stanford, UCLA, Santa Clara and finishing in San Diego. We turned home driving through Yosemite.  After the park, we drove straight home, a week away in La La land resulted in my son’s friend beginning to come to terms with his mother’s death.  Understandably, he wanted to get home as quickly as possible. I was so pleased this December when my son’s friend, a first generation college graduate crossed the stage at University of Idaho. After such a tragic beginning to his college career, his success gave all of us in our family a spurt of joy.

Over the years, mental health issues have grabbed more of the spotlight. The Affordable Care Act(ACA/ObamaCare) now about to be repealed requires that insurers pay for behavioral health treatment at the same level as other medical services (the technical term is parity and insurance payment for mental health is a recent development). I am an example of the success of having access to resources. Unfortunately, treatment still carries a stigma unlike cancer and too many people can’t access appropriate care either because it isn’t available or they are unwilling to admit they need help. Idaho has one of the worst community mental health systems in the nation. Our suicide rate is too high. We can strive to do better as a state. As individuals, we can all be  supportive friends to those in need. My friends kept me going when I was surrounded by darkness and despair. Thirty years later whenever I’m with them I bask in their light.