Observations From Below: Call Me the Starfish Thrower

One of the things I miss from my time at Guilford College is the graduation ceremonies. Since I was a marshal, I attended four of them in a row, including my own. When you attend as many graduations as I have, you hear similar themes over again. One of the stories some speakers liked to use is called the “Starfish Story” from an essay written by Loren Eisley with the title, “The Star Thrower.” I have to admit; it’s a great story for a graduation because it’s about one person’s ability to make a positive difference in the world, even though that difference might seem insignificant to outsiders. According to the essay, a wise man happened to see a plethora of starfish lying on a beach for as far as the eye could see. He witnessed a young man throwing the starfish individually back into the ocean. If the starfish remained on the beach during the hot sun, they would eventually die. The wise man inquired as to why he was exerting so much effort into throwing the starfish back into the water, as there were miles of coastline, and surely his efforts wouldn’t make any difference. After throwing another starfish into the sea, the young man’s response was, “It made a difference to that one.”

The closer we get to the Republicans in Congress passing a health care reform that might involve reductions in Medicaid, the more I feel like the young man in the story. Despite my best efforts to communicate to our representatives how important Medicaid is, they still seem determined to repeal the Affordable Care Act. Although I disagree with the cuts in Medicaid, I understand where they are coming from. Premiums are indeed too high, and there’s not enough competition in the markets. Having talked to my representatives in person, I don’t think they want to hurt people with disabilities on purpose. In fact, my representative told me that she wanted to help me. I don’t believe that some of them understand how Medicaid is not just a health program, but it also pays for other things such as support staff and other equipment that is necessary for people like me to be a productive member of society. Even though it seems like we’re not going to win this fight, I am still engaged in pursuing the best the health care policy for everybody. And to be honest with you, I don’t care which side delivers.

I am fortunate that I keep having incidents that sustain me in this strong advocacy. I can witness the positive effect I’m having on people because I’m stepping up and taking more of a leadership role. For example, my 4-year-old cousin is behaving very differently than the other children in his age group. My experience has been that a lot of young kids like to stare or become timid around people like me in a wheelchair. I saw him a couple of days ago and he was playing with a stuffed snake, and pretending to bite people. I thought he might avoid me, but he bit me several times, and then hugged me when it was time to leave in the same way he hugged everyone else. If there were more children being raised like he is, I think we will get through this current crisis just fine.

Another experience I had recently involved the movie Wonder Woman, a motorcycle and my assistant Dave. His daughter was visiting from Texas a couple of weeks ago, and we decided to take her to Wonder Woman because it’s about female empowerment. When we arrived, Dave saw an older gentleman on a motorcycle parked in the handicapped spot. I’m so used to people doing this that I probably would have just let it go. Instead, Dave embraced his inner Minnie Driver from Speechless, and confronted the driver, I can’t print the dialogue, but long story short, the motorcyclist moved his bike down to the nearest non-handicapped space. It was the first time Dave had confronted someone like that, and I couldn’t stop laughing.

We can all learn from Dave’s experience, and stick up for each other in simple but profound ways. This is another sign that we’re going to be alright.

One last thing I want to talk about. I have just finished co-teaching a class called Disability Advocacy Training in Action. My class was based somewhat based on Partners in Policy Making. But whereas Partners has to be taught in the state capital, our class was the attempt to bring it into local venues. And it worked. We took the time to plan everything and found local funding and experts. We averaged about twenty applicants in attendance. One of my students yelled at me for ending the class when we were done with all the sessions. Being around the other advocates during my class is also reassuring. I look forward to seeing how the students use the information I helped teach them. Hopefully, they will show some of their friends a few of the skills they learned, and that way we will rebuild the self-advocacy movement in the states by extension in this nation. Even though some in the Federal Government remain determined to reform our healthcare system in what could be a bad way if they’re not careful, I see evidence that advocacy is working. The Senate of the United States tried to pass a health care bill last week that would have cut Medicaid by at least 800 billion dollars, but they failed to get enough votes to pass it. Interestingly, some senators mentioned the potential cuts to Medicaid as the reason they didn’t feel comfortable supporting that bill.

The Medicaid program is not out of the woods yet; since they didn’t have the vote, Senate leadership can always bring it back at any time they feel they have the votes. I urge you to take some lessons from the starfish story and continue to try to make small differences by contacting and visiting your senators at home and in their offices and sharing your stories about why we need to protect people with disabilities by protecting Medicaid and the long-term services that only Medicaid provides. Thank you all for your hard work.

That’s how I roll.