I only read contemporary realistic fiction and nonfiction. I am often questioned about my choice, sometimes even with a tone of reprimand: “How can you not like fantasy? How can you not read science fiction? You are an English professor, you are supposed to like all literature. What about Dystopian novels? I mean.. don’t you want to escape? Wouldn’t that be better for you?
The inference is of course that because my actual life is hard as a mother to a child with a severe disability who has endured 37 procedures and surgeries in 13 years that I should want to escape.
There is no escape, so why tempt myself by reading about it?
And, I don’t read about dystopian worlds, because I fucking live in one.
Let’s examine the primary themes of dystopia: Oppression, Powerlessness, and Rebellion.
There is always a heroine or hero who questions those in power, seeks to change the system that creates oppression —through rebellion. In my world, there is mostly oppression and powerlessness, little opportunity or time or energy for rebellion. I fight to care for my child, for my child to be taken care of, and to work to pay for the care and needs of my child. That’s it. And all of us living this life, live just like that. We can’t rally or gather or create an underground resistance, because we don’t have anyone else to care for our child.
I have lived a life of oppression, born poor and despite having worked hard to obtain a successful professional and personal life, I am still cast out by the “Have’s.” My education was delayed, because I had to work and save in between degrees to receive a doctorate, finally at age 42. I graduated from state schools. I don’t have as many publications or research, because I have had to work my way up into higher education through several adjunct positions. I believed—naively— that the playing field would be equal in an intellectual community. I was wrong.
The rich girls and boys whose families paid for their educations, who could fatten their college applications as class officer presidents, student athletes, and national debate champs in high school instead of working 35 hours a week to ensure you would have clothes, food, and school supplies or enough to maybe go to college for at least one year, the same ones able to attended top schools and once there, worried only about studying and service, fattening their vitaes to move up the graduate school ladder, securing the best assistantships, and eventually entering higher education as tenure line hires — all by the age of 30.
So having a child like Will and having to work hard wasn’t hard for me. I’m used to it. But, because of Will’s need for care, being forced to quit work and change careers where my work schedule could be more flexible, having to start over leaving a position that I had worked years and years for, finally a position of respect and power — finally border crossing into “Have” territory and then being thrust back down into a position of “Have not,” working for younger, less experienced “Have’s” who know you are vulnerable because of your son, who know you need the job, who sometimes take advantage of that power over you.
If I had reliable home health care nursing for my son, I could maybe rebel, rally, resist. But there is a nursing shortage (and a country and a President ready to cast out health care for people like my son) and home health care nurses are in the highest demand. There are good ones, but there also too many incompetent, even just bad ones.
They fuck up, don’t show up, or don’t want to work. And rarely get reprimanded because the companies that employ them need them, good or bad, to keep bringing money in. And even if they are reprimanded, they can just get another job.
Let’s examine some of the bad or incompetent nurses we have had over the years:
- The one who told us on day one that he has a drinking problem, and we should hide our liquor.
- The one who insisted that in 2007, Bill Clinton was still president and he was so happy he was running for re-election when Bush had been president since 2001 and who then proceeded to fall asleep singing “Hail to the Chief” in his sleep next while Will was crying right next to him.
- The one who said that my son didn’t look as retarded as he sounded on paper.
- The one who used Meth and gave my kid Meth MRSA.
- The one who left him in the van with the van running while she went into a CVS to get a soda.
- The one who instead of taking Will to school, went shopping and ran her errands all day.
- The one who had her boyfriend in my house when we weren’t here so they could hang out on the down low since he was still married.
- The one who let him fall out of his wheelchair because he didn’t strap him in at all leaving a scar below his right eye.
- The one who broke his ankle because he didn’t strap his feet correctly and then lied about it and let him lay in his bed for three hours with a broken ankle and no pain medication.
- The one who insisted that Will intentionally attacked her with his spastic arms, because he can control his spacsity (he can not).
- The ones who refuse to use a plunger and overflow your toilet, ruining your basement closet and bedroom below… and then don’t tell you. You walk into the water after they leave. Plumber says it happened hours ago by the damage.
- The many, many ones who don’t show up, don’t call, or call off ten minutes before I need to leave for work or insist on leaving early.
- The ones who are not completely incompetent, but can’t be trusted, so I have to hire and pay a second person to watch them and make sure they do their job.
***These are just a few highlights- my actual list is much longer.
Below is an example of a typical dystopian day in my life:
Last week, one of the incompetent nurses that I want to replace but can’t because there is no one else, decides she is going to quit. This after I have spent weeks paying for extra help and continuing to train her in the hopes she will get better. Fortunately the agency says they have a nurse to replace her. They send New Nurse to train with Incompetent Nurse. Incompetent Nurse doesn’t show up. I call her. I tell her the bus is leaving in 10 minutes, and that New Nurse is here ready to orient. Incompetent Nurse hasn’t been sleeping well lately, so she decided to sleep in. Telling people like me who are up two to three times a night, every night, for 13 years with a sick child, is not okay. Telling someone you are going to be late making them late for their job is not okay. New Nurse then drops her glass bottle of Kombucha Tea, which shatters, covering you, the concrete porch, and porch furniture with a smell of vinegar and funk. You tell Incompetent Nurse to get to Will’s school by 8 a.m. You call School Teacher and ask her if she can orient New Nurse until Incompetent Nurse can get there. You call The Agency to tell them what’s going on and insist that Incompetent Nurse be reprimanded. You get New Nurse and boy on the bus. You clean up glass and purplish funk off your porch in the dark at 6:30 a.m. in the cold. You don’t eat breakfast, you don’t bathe, so you can get drive one hour to work. You come home to Incompetent Nurse and New Nurse sitting on your couch, drinking Diet Coke, talking like long lost friends while Will is not positioned correctly and hasn’t yet been fed. You sign them out. Get Will fed, medded, washed, changed, and cook dinner, and finally take a bath at 10 p.m. You are woken up at 3 a.m. Rinse and repeat.
So, no, I don’t, I won’t read dystopian novels. I have no high hopes for a rebellion. And I have little hope of any utopia.