Saturday, March 26, 2011

Dear Ashley X...

Dear Ashley X,

This is not a personal note for you...but for all the Ashley X's being created out there.

I have found out that since the crass and self-serving advertisement of the "treatment" by a certain little girl's parents, and in spite of the fact that the hysterectomy performed on that little girl was deemed illegal (too little, too late), many doctors are now "quietly" performing this "treatment" at the request of parents. Many of these treatments are also being performed illegally, many of these are being performed on boys now too.

The tiny upside is that the mastectomy performed on the first little girl is not being performed on other little girls....the horrifying fact being that it is not medically necessary to attenuate growth and that the original parents live in depraved ignorance about the nature of sexual assault...Their daughter paid for that with her breasts.

Dear Ashley X, I am so sorry that my tiny little blog and the tiny little voices of others who understand severe disability have not been heard and that we cannot save you from your fate. We cannot save you from a world that doesn't value your personhood, a world that believes that the body parts on your severely disabled body and your chance to grow-up are not as important as it is to make it easy and cheaper to care for you. I am sorry for the belief that your type of cognizance does not match that of the majority, so, then it is perceived to be okay to irreversibly alter your body. After all, it has been deemed by others that you won't know the difference, and so, you won't care. The doctors and your parents have become mind readers.

And, dear Ashley X, I am sorry for your parents. I am sorry that they were "counselled" by the medicos that this is a viable "treatment option" for your disability. I am sorry that, only three or so years into their lives with you, that they have not had time to come to grips with what it means to have a child with severe disability beyond the work it entails. I am sorry that they will not be able to see you grow up and take pride in that, but that they were instilled with fear that your ultimate size would make you "unmanageable" and their lives more difficult.

I am sorry that your parents were likely lead to believe in utter falsehoods...that growth attenuation will ease or stop scoliosis, that it will make you less likely to have bed sores or contractures or pain. I am sorry that they were fed false hopes, that the doctors will make it seem that you will be much smaller than you will actually be in the end, because they are just guessing with statistics.

Dear little Ashley X, I am sorry that you live in a world that, no matter what size you are, will not provide adequate assistance for your parents to care for you. I am sorry that they will still have to do all the work required to care for another human being and that, no matter what your size, they may become tired and lonely and financially strapped. I am sorry that you may end up institutionalized and possibly given only minimal care. I am sorry that you live in a world that thinks you are a burden and that, really, you shouldn't be allowed to live in the first place. I am sorry that the genuine lessons you have to teach and love that you have to bring to this world are not recognized or valued. I am sorry that, the very fact that you were born and are living should be enough to make people care, but that it doesn't.

I'm sorry, Ashley X...I am so sorry.

Wednesday, January 5, 2011

Wednesday, January 5, 2011

From: The Flight of our Hummingbird

A long post in which I don't discuss mucus but talk about Izzy and growth attenuation

“She is in the 90th percentile!” – the nurse exclaimed excitedly as she has recorded Izzy’s height on the chart. My tiny little Bean who hardly made it onto the chart when she was born has grown into a String Bean.

“Oh that’s great.” – I blithely told the nurse with an affirmative head nod. Then after she left and it was just the Bean and I in the small examining room, I silently shook my head. “I’m so screwed” – I murmured to myself. “I have a 3-foot tall giant baby who still can’t sit up.”

Not that I haven’t noticed that Izzy has grown out of her stroller and has grown into the size of a small ball python. I’m barely 5”2 when I stand straight in my thick winter socks, and even with the leftover baby weight I only weigh around 109 pounds, on my fat days. I find the best-fitting clothes in the junior department and I regularly use “adaptive tools” to reach the items on my kitchen shelves. I’m bordering on child-sized, but space-efficient is the term I prefer. Izzy, on the other hand is built like her Dad: she is tall and lean with very long arms and legs. Phil was practicing weight bearing and standing with her the other day and I was astonished when I saw her in a vertical position: she would be a head taller than her peers, if she was able to stand.

Due to Izzy’s height and weight, it is increasingly more difficult for me to pick her up, to carry her, to put her in her stroller and to give her a bath. Not to mention suctioning her nose, which is reminiscent of wrestling with an octopus. Since Izzy has the height and weight of a two year old but not the body control, it is a challenge to maneuver her. When you pick up typical children who are my daughter’s size, you don’t have to scoop them up from a lying position, as they are able to sit and stand. They also cooperate by lifting their arms and holding on to you, which makes a significant difference. I can’t just casually hold Izzy in one arm, I have to give her extra support and be prepared for a sudden drop seizure that could leave her injured. Of course it could also leave me injured, depending on the colliding body parts.

Izzy’s potential tallness makes me slightly nervous, because of its future implications concerning her care. There is no guarantee that she will ever walk, but even if she does, lifting, maneuvering and taking care of a body that is larger than your own is strenuous work and comes with special challenges. Since I always keep one eye on the future and my middle name is prudence, I’ve been working out with some serious weights to build up more upper body strength. I do have some nicely toned arms and shoulders as a result, but really, who am I kidding, I’m still the size of a 12 year old boy.

When I was reflecting upon my feelings concerning Izzy’s growing body, Ashley X came to my mind. Ashley, or the “Pillow Angel” as her parents affectionately refer to her, is a severely disabled Seattle girl whose growth was attenuated in order to keep her child-sized and thus more manageable. Ashley received high doses of hormones to stunt her growth and went through several surgeries to have her breast buds, uterus and appendix removed. Her parents stated on several occasions that the purpose of the treatment was to ensure the best quality of life for Ashley and not to make life easier for the caregiver.

I understand the concerns and fears that drove Ashley’s parents to make such drastic decisions about their daughter’s body, but while I can relate to their feelings, I cannot imagine making the same decision for my daughter. In fact, it makes me shiver just to think about it.

Even though Izzy’s potential tallness makes me slightly nervous, it also fills me with pride and joy to see her budding beauty. When I look at her long lean body, her peaches and cream complexion, and her bright blue eyes, I see Phil’s reflection in her features. Her appearance reminds me that she is a part of Phil and a part of me, but I’m also aware that she is her own self. She belongs to me but I don’t own her. I will probably make decisions for her as long as I’m alive, but my decisions will always honor her and her rights to her own body.

I repudiate growth attenuation at an intellectual level, because it violates very basic human rights, but my aversion goes deeper and it feels wrong at a visceral level. I will never put my daughter through growth attenuation, just like I won’t pull her teeth out, even though she doesn’t use them being completely tube-fed. I will never have her uterus removed, just like I won’t have her legs amputated, even if she doesn’t learn to walk. I will not have her breast removed, just like I won’t cut her lovely curls off, even if my life would be easier if she had a crew cut. And that’s just it. I don’t see how growth attenuation would benefit her, as it wouldn’t help with the mucus, the seizures, or her motor skills.

I don’t believe that preventing the sexual maturation of severely disabled girls directly improves the quality of their lives. Rather, it eases the psychological discomfort of people who perceive secondary sexual characteristics incongruous with a limited physical and mental condition. I wonder if this psychological discomfort also played a role in the decisions of Ashley’s parents. Perhaps they embraced the role of the parents of a severely disabled child, but they didn’t want to become the parents of a disabled adult. Pillow Angels don’t have breasts or menstrual cycles. It is not easy to wrap your mind around your child’s disability, but I personally rather transform my own thinking and perception than alter my daughter’s body.

Read more:

Wednesday, January 5, 2011

By Bill Peace

Great Quote

I just came across the following quote by Eleanor Roosevelt:

"Where, after all, do universal human rights begin? In small places, close to home – so close and so small they cannot be seen on any maps of the world".

This reminded me of how misguided the parents of children are who seek out growth attenuation. The most vulnerable people among us are in my estimation important. They are humanity reduced to its basest element. How we care and value these lives says much about our culture. To date, we Americans do a very poor job caring for the vulnerable--the elderly, terminally ill and disabled. All are stigmatized, their lives deemed less valuable than those who are "productive". But what exactly does that "productivity" mean? In looking back on one's life are the monetary goals one reaches more important than love, children raised, family, and the contribution made to the world.

When I was a child my father never asked me how I did in school. Instead he would say "Did I ask a good question and think independently". Answers he told me can always be found but asking hard questions is what separates original thinkers from drones. He did not want me to be a drone. In retrospect I suspect he wanted me to carve out a different life than the one he led. Without knowing it he led me to become an anthropologist as we as a group always ask hard questions and defend the rights of the most vulnerable--often indigenous populations or minority groups. Little did I know I would join the largest minority group in America--the disabled. But I was prepared like few others. I had a penchant for questioning and life long propensity to reject the status quo. What I wish and think the above quote by Eleanor roosevelt gets at is that we all must assert our rights and the rights of those that cannot assert them independently. We must look into the eyes of the most vulnerable and see ourselves. We must protect those that cannot protect themselves. This is where I think growth attenuation fails miserably. Growth attenuation is a simple answer to a complex problem. It enables parents and doctors the luxury of no thought--no consideration of the other, people that do not nor will ever fit in with social expectations. What are there needs? Why are those needs not met? How can we force society to change and become a welcoming place for all those with and without expected cognition and physical prowess. I offer no answers today just hard questions. Questions I think my father would be proud I am thinking about.