BRATTLEBORO — If you live in what Susan Sontag famously called the Kingdom of the Sick, you will find yourself waking up one day asking how you arrived in this somewhat dreary place.
Many of the roads from away lead to the Forest of Nowhere in Particular, winding aimlessly through the dense growth of a life filled with the usual combination of good and bad habits.
Very few of us know what made us sick - we just end up with cancer or mental illness or any number of chronic diseases that land us in doctors' offices and hospitals and insurance-company phone queues.
Now the Republicans want to build a wall around our kingdom and tax it to death - and tell us it's our own fault for being in here in the first place.
The recently leaked Republican plan to repeal the Affordable Care Act includes money for states to create high-risk insurance pools for the very sick - people with chronic illnesses and those who have had or currently have cancer and other major diseases.
Those pools are not a new idea. They've been tried before, and patients end up paying very high premiums.
That makes sense: If the insurance pool is made up only of very sick people, it's going to be a very expensive group of people to insure, so premiums are going to cost a lot.
The ACA mixed those very sick people in with everyone else to balance out the premiums for everyone, and the law added protections for people with pre-existing conditions to ensure that they could be covered.
At the same time, House Speaker Paul Ryan and other Republican leaders have been talking about returning “personal responsibility” to health care, along with the “freedom to choose” one's own insurance plan.
The idea, according to Allison Hoffman at UCLA School of Law, is that when people have more “skin in the game” in the form of more expensive coverage, they are more likely to make healthier life choices.
Ryan has been talking this idea up for years. Of course it's not backed up by research, but it's the Republican talking point - along with the “freedom” to choose coverage that suits you.
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There are many dangers here, many of which have been discussed very thoroughly elsewhere. I want only to point out that by grouping all of the very sick people in an insurance pool with very high premiums (because they will be uninsurable elsewhere, without pre-existing conditions protections), and by trumpeting the rhetoric of personal responsibility, Ryan and his ilk are essentially blaming those of us in the Kingdom of the Sick for being here.
They ignore the fact that many of us are here because of diseases that have no relation to life choices or unhealthy habits. Their beliefs also ignore the genetic component in illness like heart disease and diabetes. Within the framework of personal responsibility, it is your fault if you fall ill, and apparently, it is your job to pay for it.
Those of us living with chronic illness deal with a heavy load of guilt every day. We feel bad about cancelling plans or not being able to make them in the first place. We wish we could more equally share the burdens of child care and housework with our partners. We desperately wish we could take our children to the park every time they ask us.
Adding to this guilt the rhetoric of personal responsibility for our illnesses feels inhumane.
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When we discuss health insurance, we must not lose sight of the fact that we are also discussing health care. That is, we are talking about a way to provide care to people who are either healthy and wanting to stay that way, or sick and wanting to get better, or sick and needing regular and compassionate care. Some are at the end of their lives.
All of these people - every single one of them - deserves better than a finger-waving Paul Ryan telling them they should be practicing “personal responsibility.”