Hysterectomies and Girls with disabilities

Heaven help me and Mercy me. Mim is 10. Her first friend got her period. This event is a rite of passage and every woman has something to say about a child in third grade at the age of 8 starting her period.

We all talk about when we got our period. The age. The day. The place. The song on the radio. I remember hoping my mom didn’t tell my dad. I was 11 and I had two younger sisters and I wanted to become invisible on the topic. We sat down for supper in the dining room on Vaughn’s Gap with the big round window and the strange Gone with the Wind mural on the wall of Tara. The first thing my mom said “Well, today sure is a red letter day.” Mortified.

We all have our story of origin for womanhood. Aunt Flo coming visit. Friends tell stories of having a swim meet the day after starting their first period. Teaching themselves how to put in tampons. My mom talks about belts and her big sister, Merrilyn taking hers. I was embarrassed to carry my kelly green monogrammed purse with strawberry ribbon trim. Everyone will know I am bringing my purse because I am one of the few fifth graders who has to carry a purse to the school restroom. As moms, we want it to be easier on our daughters and the invention of period proof underwear seems more useful than sliced bread. Can we save our girls from painful cramps, embarrassment about early onset puberty or late onset puberty, and stains on white shorts?

And there are bigger implications. Our little girl is becoming a woman. Ugh – that sentence makes me cringe. (This is my own strange cringe- Ladies. Women. Woman. Lady. What word should I use? What word am I? As a Southern born girl, Woman was just a word on a public restroom at a gas station. Ladies was preferred but feels so stagnant and frilly to me.) Our child is growing up. Puberty is a sign to us strange human beings that life is unalterably changing. Childhood is ending and adulthood is beginning. Admittedly this is and should be a long process. But it is an opportunity for ritual and expression of appreciation of who your child is becoming.

I am aware that Mim has a disability. I am aware that Mim will completely flip out when she gets her period. I am aware that Mim flips out when she sees a drop of blood on her body anywhere. She flips out at the idea of blood. And some would think I should come up with a Plan B. Is there a way out of this whole Mim becoming a woman thing. Can she stay a child? If developmentally she is disabled, can’t she just remain stuck in childhood forever? Can a doctor or a surgery rescue her from cramps, discomfort, and messiness? Can a doctor or a surgery rescue me from dealing with her possible mood swings, extra laundry, extra showering and additional complaining? Do I as her mother have the right, or even the responsibility to avoid Mim experiencing this integral feature of our human existence or at least our existence as this particular gender?

When the topic of Mim’s friend, Alice starting her period at age 8 started circulating, I wondered again at what it would be like to include Mim on this journey. How will I prepare her? Why does she refuse to look at the picture books about our changing bodies? What will this new stage bring? What trials and what joys? Will she feel happily grown up and like her sisters? Hoping for late onset puberty and a remarkable amount of sensory difficulties to decrease before I have to navigate the world of menstruation for Mim and with Mim. Will she feel independent? Will she be miserable?

I have had two friends relay rather nonchalantly, that they know someone who took her 11 year old for a hysterectomy. The child was severely disabled and the idea was that her mom saved herself and her child a world of trouble. (Hopefully this was the same child that they both happened to know. Please God, don’t let there be two girls and mothers in this situation. I nodded and smiled and agreed that Mim’s reaction to having her period would be outlandish and too much.

But I walked away from both conversations furious.

This practice had been known as eugenics -one from the history books-

(It is sufficient to say that eugenics was not only fashionable; it had somehow become the law of the land. There were so many eugenics devotees lurking about during the early part of the last century that it would require a whole volume just to name them all. The eugenics movement began to spread from the United States to Germany and there was one person who recognized its dark potential, and began to orchestrate a plan to put it to full use. His name was Adolph Hitler. It is indeed frightening to think that Hitler got his visions of racial purity from ideas popularized both in the United Kingdom and the United States of America, but he did.)

Eugenics is an assertion that my daughter isn’t to be included in this developmental stage. She isn’t to be included in becoming a developing teenager. She won’t be allowed to be a woman with a functioning uterus. She is less than. Feeble minded was the term of the time for a cognitive disability or intellectual disability which some refer to as mental retardation. Mim has a cognitive disability– well actually she has multiple disabilities (an unnamed genetic disorder, Valproic Acid syndrome, low vision, sensory processing disorder, some characteristics of autism, and very mild Cerebral palsy.)

And then there is a whole ‘nother unspoken truth. Periods lead to all kinds of development. Breasts. Hips. Pubic Hair. And SEX. Are my well meaning friends suggesting that their fear is that Mim will be a sexual being and she will be taken advantage of?  “Individuals with disabilities are at a much higher risk of sexual assault and abuse. In fact, children with disabilities are up to four times more likely to face abuse and women with disabilities are nearly 40% more likely to face abuse in adulthood.” Is their fear that she will find herself pregnant?

Thinking about our kids having sex- well no one wants to be in that wheelhouse. For my healthy, fairly mature growing children I don’t want to delve into their sex lives. I wouldn’t say I’m afraid of it. I’m just hesitant. To think about Mim being a sexual being is a lot to ask. But isn’t that misunderstanding sexuality all together? Are we born sexual beings? Would taking out her uterus at the very onset of puberty stop Mim from ever having sex? From ever being taken advantage of?

Is suggesting Mim have a hysterectomy a deep internal fear that she will have a baby and bring a life into the world that is less than neurotypical or developmentally stellar? It isn’t. No one is intending for me to think of this as an insult to Mim or to all people in the Disability community. But people in the Disability community are treated as less than. That is a fact. Today- children are being separated or degraded by people and a society that segregates and discriminates people with disabilities.

People with disabilities are one of the last groups that it is sanctioned by society to discriminate against.

*High school kids use the word sped to degrade their peers. At a high school soccer game, I heard our high school students attempting to demean a player of the guest team. They yelled “You got here on the short bus.”

*Students with disabilities are perceived as not belonging at this school or in this program.

*A young child was kicked out of a Disney movie for laughing differently than children who are typically developing.

*Children in self contained classrooms are physically abused by their teachers and caregivers.

*Young people who are severely disabled are placed in nursing homes when their parents are no longer able to lift them instead of the government funding in home assistance that would be tons cheaper.

https://www.npr.org/2012/10/16/163018620/disabled-kids-living-isolated-lives-in-institutions

*People with disabilities are at high risk for being bullied and victims of crimes.

*Civilized nations develop policies to support ending pregnancies of any fetus with genetic disabilities like Down Syndrome.

*People with Down Syndrome are discriminated against in Organ transplant opportunities in hospitals in the United States.

*Measles outbreaks are occurring because people illogically refused immunizations for fear of autism.

Parents whose children have disabilities have to hear how lucky their child is to have parents that love and care for them- when we all deserve love and care. Mim isn’t lucky to have us. I don’t really see how she is lucky at all. Amazing, yes but not lucky. We are the object of stares and glares when we want welcomes.

I am so fortunate to be in the Disability community. I get to see the world from the point of view of people who appreciate life. I find joy in the path less taken. I like the non conformity, the truth in it, the realness. I’m not going to tell you that people with disabilities are like angels- because they are full of personality and wrong and right just like the rest of us. People with disabilities aren’t immune to humanity. They are not exempt from sexuality or choices (whether good or poor). They are people learning and growing. Deciding when a girl is prepubescent or even older that a non medically necessary major surgery is the best course of action is an assumption that is based on a foundation of prejudice and segregation and forced sterilization. Mim and every human is a person capable of progress and learning and deserving of respect. Mim and all people with disabilities are worthy- worthy to live fully human and to become adults. Mim is worthy of inclusion because she is a human.

When I say INCLUSION, I’m not talking just about schools. I’m talking about the human experience. It could be argued that it is easier for Mim to be in a self contained classroom- less stressful for Mim, less work for her school, less tolerance for her general education peers, less differentiation for her general ed teachers, less worry for me. But I don’t get to take that path because it has been proven to have poor lifelong outcomes for people with disabilities. It is philosophically, morally and ethically wrong to segregate people with disabilities. Separate is not equal. For anyone. Separate is not equal. Separate classes are not equal. Separate work places are not equal. Separate housing is not equal. Separate treatment under the law is not equal. Separate policy is not equal. Separate medical treatment is not equal. Protection from life and development is not equal.

Many lovely beautiful progressive people are blind to the workings and opinions and rights of the Disability community. We forget the horrors of eugenics- just like we avoid talking about slavery. It isn’t that we are intentionally being racist or discriminatory. We actually desire to be the opposite. My friends want to save Mim trouble- the trouble of periods. I hear white educated people say they don’t see color. And I bet many people think they see Mim as they do any child. But yet I was furious when a hysterectomy was suggested. Furious because I am Mim’s advocate. Her protector. Her mom. I want for my community to know the difficulties that people with disabilities face. I want them to remember that Mim needs extra consideration. We need to talk about her future in light of the past and present of the prejudice against those with disabilities, like we would of any marginalized group.

It was an innocent comment the question of whether or not I would get Mim a hysterectomy to avoid periods. And yet it was so heavy to me. So loaded with undermining of her community and her future.

*Disclaimer- I blog like I am. Passionate. Somewhat knowledgeable. Mama Bear. Take no prisoners. Love has no pride. No make-up. Not well rested. Awful at a small talk. Awkward in large groups. And not commercially viable. Who wants to read about discrimination of children with disabilities? No one wakes up and thinks I’ll check Facebook to see if Martee offered her opinion on hysterectomies of girls with disabilities. Yet, here I am sitting in the dark at the foot of my bed while Mim begs me to scratch her back, believing that I have something important to say and that someone will read it and feel less alone or more compelled to love.

Donation opportunity. I recommend TASH !!!!!!! “TASH is an international leader in disability advocacy. Founded in 1975, TASH advocates for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. TASH works to advance inclusive communities through advocacy, research, professional development, policy, and information and resources for parents, families and self-advocates. The inclusive practices TASH validates through research have been shown to improve outcomes for all people.”

P. S. I am not suggesting that I have not begged Mother Nature and the universe and Oprah Winfrey to take my period away. Many of us would like to be spared from this monthly nuisance or trauma. And I understand that many of us suffer greatly and repeatedly because of menstruation. I am grateful for advances in medicine that will ameliorate the pain, inconvenience and the length and duration of periods. I will offer Mim education and choices regarding all of these resources.

P. S. S. I hope you clicked away and checked out all the links that have much more information than I could ever relay accurately and thoroughly. great stuff like Teen Vogue article on Disability and Sex Education and many more great articles and research.