Hands off.

I’m frankly appalled at the news these days. I get that much of what I read and see comes through the lens of the particular bias of whatever news outlet I’m utilizing, so I do my best to read the source materials, the laws, bills, etc. However, I am seeing some really scary trends these days that affect me directly.

First, let me detail my own biases. I’m a white woman. I was born at the end of Generation X in the late 1970s. I was raised in an evangelical Christian home as the eldest of 6 children and I was homeschooled until high school. While we did move a great deal when I was a kid, I identify as being raised in the Midwest. My parents were born in Ohio, I was born in Ohio and I went to high school there. I’m also a registered Republican as are my parents. Later in life, I married a dark skinned naturalized US citizen from Jamaica who is a registered Democrat. I am an attorney. I have spent most of my career working in and volunteering for the foster care system in Florida.

I’m not sure what category I belong in now but the older I get the more moderate politically I become. No, I’ve not given up my Republican registration but I do tend to vote for a mix of candidates now and focus more on issues than party lines; and I’m frankly pretty disillusioned when it comes to our system of government.

Given those biases, here is what I think about some key issues …

Patented Genes: I learned recently that an enterprising company actually patented the BRCA genes some time ago. This patent then made it more difficult to do research or really, more expensive. I suppose this is capitalism at its best. Well, the idea of patenting a persons genes was litigated and I believe the court made the right decision when it concluded that no one can patent something occurring naturally. This seems to be a basic principle that wouldn’t need to be litigated, but those are the times we live in. It will be interesting to see how this precedent is applied and I understand that there are some bills pending that will make it clear what can or can’t happen in the future.

Hands off my genes!

Abortion: I believe that life begins at conception. I believe that the baby formed when the sperm hits that egg is a precious life deserving of protection. HOWEVER, I’ve also seen first hand what happens when a baby is born to a family who is not prepared to take care of that baby.

Notice I didn’t say woman. That’s important. The men who impregnate women should be just as much on the hook for all that comes with parenthood. The larger families surrounding the biological parents also need to see themselves as part of the solution.

I personally believe the current “pro life” movement in the United States is primarily “pro birth” because, in my experience, all of those people who are comfortable picketing Planned Parenthood disappear when it’s time to help support a family who is not ready for a baby and when a child enters the foster care system because the biological family can’t or won’t raise the child, they are also notably absent. Until the pro life movement understands that they must deal with all consequences of a forced birth, I’m not on board with their methods. We cannot abandon the people most effected by a pregnancy, many of whom are still children themselves, and still call ourselves pro life.

Again, I believe that abortion is literally ending a life before it begins and I fervently believe that life is precious. I’ve talked with women who have had to make impossible choices. I’ve counseled women on all their options. I’ve been present at adoptions. I’m not speaking from an ivory tower, I’ve been in the trenches.

Yet, as a woman, I’m not ok with anyone telling me what I must do or not do with my body. I have not had to make an agonizing choice about what to do with a precious baby so I can’t relate to that; at the same time, I am 100% on board to support other women in their fight to keep other people, primarily men, from making decisions for all of us.

Hands off my body and the bodies of other women. It’s just plain wrong for anyone to tell another person what to do with their bodies, especially when the people primarily interested in doing the telling don’t have the same parts.

Pre-existing conditions: I read recently some statements from a politician in Alabama who said something like that he believed people who “live right” don’t have pre-existing conditions. I’m sure he had a few select pre-existing conditions in mind when he made that idiotic statement. That, however, frames this discussion in a way that makes it obvious how people who have not been touched by illness view those of us who are ill. It is my opinion that this sort of statement is akin to white privilege. People who haven’t experienced what happens when illness changes you and your family are prone to making ill advised and tone deaf statements. Just like white people continue to make statements about the experiences of minorities that are awful.

Before the Affordable Care Act (ACA) was enacted, I remember reading insurance policies that defined pregnancy as a pre-existing condition and exclude a pregnancy that occurred within 12 months of the inception of the policy. I thought then and I think now that that is a terrible thing to do. Now I have a pre-existing condition for which I endure daily treatment.

I’m not claiming to have led a perfect life, but I also don’t accept that I am responsible for having cancer or that I caused my cancer. I have a genetic condition that I didn’t know about until after I was diagnosed and I’m in the minority since most women with breast cancer have no clear reason for it. Lung cancer is even more clear — many people with lung cancer have never smoked.

Patient shaming and attempting to marginalize those of us with pre-existing conditions to simply die is the definition of morally bankrupt. Hands off my insurance coverage.

Right to die/Medical Aid in Dying (MAiD): I get that this is a really sticky subject and before I was diagnosed with a terminal illness, I’m not sure if I could have articulated a clear position. Now, I think about what a good death looks like a lot and I live with a lot of chronic pain that sometimes is so bad that I’ve longed for it to end, however that is accomplished.

Until one lives with chronic pain, it is hard to understand why a person might choose not to continue living. Until one experiences allegedly life saving medication that literally makes one want to die, it is hard to understand why someone might choose not to take it. Until one has to think about choosing between bankrupting everyone around one in every way (energy, money, time, etc.), it is hard to understand how one might embrace death.

I read a Twitter feed recently where a doctor (with full permission from a patient), detailed the decision making and the process of implementing a decision not just to end treatment but to bring death artificially. This process was patient centered, patient driven and patient supportive. The patient was able to spend time with and joyfully end her time on earth on her terms so that she passed peacefully, while still aware of what was going on and with the support of her loved ones.

Was her choice morally right? I believe that to opine about another’s choice without being in their shoes demonstrates a decided lack of empathy. How can anyone know if her choice was right outside of the patient? While I do think that there are some moral bright lines, this is one that cannot be imposed. No person should be able to dictate to another what any person decides to do in partnership with his/her doctor.

Hands off my medical decisions. Hands off my body. Hands off my genes. Hands off my life. Hands off my death.

11 thoughts on “Hands off.

  1. Powerful and compelling. I consider myself a moderate but there seems to be a disturbing movement of people to the extremes. I worry about what kind of world my sons will have to grow up in.

    Liked by 2 people

  2. I don’t remember reading this, but apparently I did, because I went to like it and already had. I’m pretty sure you know my family’s story in this regard. I have quite a legacy that plays into the last part. And I’m still battling with what to do.

    Thank you for your words. They always help my perspective and remind me I’m not alone. I might be the only person I know in person with my disease, but many around me with other conditions really get most of the issues involved.

    Liked by 1 person

    1. It’s so important to not feel alone. That is the value of online support groups, I think. The older I get and the more brain cells that die, the more irritated I am that so many people have their hands on issues/decisions that should be mine alone. I suppose I’m getting more irritable. πŸ™‚

      Liked by 1 person

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