I have no intention of this being a political blog. Politics are messy and to write about them every day would wear out my brain. I do have to bring up something that is going on in America’s politics right now because it is scaring me and was messing with what I thought of my future–and even my life.
The “American” Healthcare Act is scaring me. It’s basically saying the twenty-five percent of Americans don’t deserve affordable healthcare. I put “American” in quotes intentionally because this bill is basically saying the twenty-five percent of Americans don’t matter. (FYI according to current statistics twenty-five percent of Americans identify as having a disability–having a disability puts a person in the pre-existing condition category.) The Americans with Disabilities Act was signed in 1990. How much hope the disability community in America had. I doubt that those who fought so hard for it thought that more than a quarter of a century after it was signed people with disabilities would continue to be marginalized. We are given token degrees but kept out of the mainstream workforce. Now, our own Government is pushing for a bill that will prevent us from having access to the medical care we need to live. In the least this will marginalize us further; at the worst, it will kill us.
I have been terrified ever since the House rejoiced when the bill was passed. I talked to a friend that night and said that if the Senate passes this bill, I would rather die then try to live. Already my job insurance and my Medicare premiums are nearly impossible for me to pay. If my premiums go up, I won’t be able to pay them. Not having access to medical care and my medication means I will go back to having fifteen to twenty dystonic episodes again. I will be in constant pain and always exhausted from having the episodes. I won’t be able to work. I won’t be able to take care of myself. I don’t see the point of living like that. I will be turned into a “useless eater.” My friend did the best they could to reassure me that there was no way the bill will make it through the Senate. Tried to assure me that even if it did make it through somehow each state would have the choice to opt in or not, and there was no way my state would opt in. I dropped the ultimatum that night. But, the thought of living with that uncertainty (I don’t have a warning of when I am going to have an episode), living with that kind of pain again, and becoming completely useless made the ultimatum tempting again.
Then, I went to church this morning. I was having a hard time paying attention, but I was doing my best. I did manage to pick up a few things. It was about looking at things with the right schema–the right lenses. I didn’t take many notes but I did write the following down:
Even the worst circumstances in life become opportunities to experience God’s love.
In other words, even if this bill passes, even if I lose access to health care and medications, even if I can’t work, even if I am pushed aside by society I have to live. Not because I am going to want to at that point, but because God can work through even the worst circumstances to reveal Himself. Dying would be me saying that my life is mine alone and I have the right to live it the way I think is best. Living even if I become a “useless eater” means I trust God can get the glory and show love in any circumstance. In God, I can live with dignity no matter how little value my Government–and the complacent citizens of my country assign to my life.