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.


  1. Absolutely beautiful, Claire. You've said it all, clearly and eloquently.

  2. "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 apparently Ashley's parents will always believe they did their daughter a great service.
    Providing an extremely mentally and physically compromised child with an aid, for example a wheel chair, is one thing but surgical intervention based on assumptions is not an aid to assist in relieving suffering that is caused by her physical or mental deficit.
    If such a child were to have enough mental acuity to understand that she will never be able to walk and enjoy life as she understands others do and is miserable from it, so should we amputate her legs in order to make her suffering less?

    Or is the fact that she can experience normal bodily functions by leaving her whole, not a more rewarding position to find oneself in life?
    Whether the parents of Ashley X were colluded into thinking the procedures she underwent are for her benefit or that they themselves spearheaded the campaign to implement these changes, the fact is that the father uses the description of his daughter as suffering from "static encephalopathy" as a banner to prescribe said "treatment" and openly encourages others to do it. But it remains merely a description, not a diagnosis and certainly not a prognosis. If that girl and others who suffer the same fate will grow up not knowing the difference then realize, the facts bear out, by experience of other parents, that there is a whole world of perception that can be developed in such children and thus if Ashley does not know any better, does not understand her predicament, it is likely the result of parents latching onto this phrase, 'static encephalopathy' and thus without expectations of their child remain oblivious to the potential for developing a very real, even though limited, connection.
    But now think for a moment that such a perception of having been forced into growth attenuation and androgynization does develop, imagine you where trying to explain the righteousness of this 'treatment' as though the child had FULL comprehension. Imagine the horror. Since we cannot break into this inner world of people who cannot communicate, lets not assume we can do to them, what we would not have done to ourselves. For people like the parents of Ashley x who apparently couldn't put themselves in such a hypothetical position before deciding, just look at patients with advanced cases of ALS. They often have no way to communicate but at least they can understand what is being done to them. How much more is fear magnified when we give a person NO chance to even understand what is being done to them?

  3. Very well stated...this is the epitome of the ultimate betrayal of a child/adult by her parents. Growth attenuation is a heinous concept; maiming a child for the convenience of the parents...for the child a denial of her identity as a human. So very tragic...

  4. I have to disagree. What matters most to me is my son's happiness and comfort. If it were me in his situation, I would want the "ashley treatment" for several reasons. I could be included in more activities; I could be repositioned more often to avoid bedsores and other issues; I wouldn't have to go through sexual frustration; I could held by all of my favorite people; I would be less likely to end up institutionalized; my parents would be able to care for me. And in regards to a female who is severely disabled as "ashley" is, why would you want to go through PMS, cramps, etc when you don't have to? In my family PMDD (a severe form of PMS that includes depression) is a factor. If I'm never going to have children, then I would welcome the chance to not go through that every month. My son's level of disability is like Ashley, and his happiness and comfort are paramount to me. I don't think that being able to mature like a "normal" person trumps being able to be comfortable and happy.

  5. Anonymous: I get the feeling you are parotting the logic laid out in Ashley X's parents' blog. Most of those views are addressed in this blog. You may want to read the entirety of it to broaden your perspective. The happiness and comfort of any disabled child/adult does not depend upon their size, but upon the type of care that they receive. As for institutionalization...will you be caring for your son when you are 80? Are you absolutely certain you won't get hit by a car sometime, and die or become disabled yourself? Are you certain you won't suffer through financial ruin, divorce? We parents of severely disabled children should put our efforts into making certain there are always good, alternate living situations for our children so that, when the time comes when we can no longer care for our children, there is something wonderful for them to go to. To imaigne that we can do this type of care "forever" is just simply living in denial.

  6. Hello Claire, I have never read their blog, I'm just going off of my experience with him getting larger. If the happiness of my son depends upon the care he receives, he will receive better care if he is smaller, simply because he will be easier for me (or someone else if something happens to me) to care for him, plus the other issues I mentioned. What is the "up side" to my son growing larger than me? Just to give him the "opportunity" to grow larger? Why is that important? However, I will be reading more of your blog to learn more.

  7. So, in spite of all the rationalizations about the treatment being good for the child, it is ALWAYS about making life easier for the caregiver. Read Dream Mom's blog. Her son is 6 feet, 180 or 190 lbs and she is a single mom caring for him alone with no help whatsoever (you need to look at older posts). He has never had bedsores or anything of the sort. Again...good care is good care, bad care is bad care. Size is irrelevant. How do you explain the care given people who become disabled later in adulthood if it is not possible to give good care to a fully grown person? It is important to allow another human being the right to grow up because it values them as they are. You have to understand that the "treatment" is considered an abomination, even by medical professionals, to a child who is not severely **cognitively** disabled. Why draw the line? What's good for the goose should be good for the gander, yes? What is being said here is that "what they don't know won't hurt them". By extension, why would you prosecute a man who rapes a severely disabled child, since they don't know what happened to them anyway? No harm, no foul, right? Basically, you can do what you want to a person whose cognition is (misunderstood and) not the same as yours. Furthermore, if a child is severely physically disabled, how can you categorically state that they don't know what is going on around them, that they do not have a sense of themselves? Anne MacDonald was considered severely retarded...yet she now has a college degree! It was asserted over and over and over again that my daughter would be "a vegetable" based on her CT scans...yet here she is, able to talk, to see, hear, smell, read, write...Many of my blog friends have severely disabled teenage/adult children and they are only too happy to care for them as they are because they recognize their right to exist as they are...people. Yeah, it's hard work, but that's the way it is.

  8. A: I fully support Claire's position. I have cared for a totally disabled son for 13 years and will for many more. Fundamentally, growth attenuation is a moral and ethical is an infringement on the right of any human being to be who they are and to allow their nature to develop in the way it needs and way intended. No person has the right to decide that another should be smaller, sexless, lighter or person, no court! As parents our choice is to provide care and to nourish full human is never to substitute our "better judgement" for that of our child. This "substitution of judgement" is a betrayal of parental love...and any doctor who colludes with the process is equally culpable.

  9. I know this is an old post and you may not see this. But it just means so much to me to see people standing unequivocally against this practice.

    I work in a residential care facility for adults with severe developmental disabilities who need twenty-four hour nursing care. (I know the whole issue of residential care is controversial, so I'm not trying to talk about that...)

    But when I'm at work (and I do direct care) I ask myself why anyone would want to do this horrible procedure. They have a human right to grow and develop and be adults. And when I discuss it with people online they just don't get it; their sympathy is all for the parents and it makes me sad.

    I am not at my most eloquent right now, and I can't restate your points better than you have. But thank you for reminding me that I'm not wrong to speak against this.

  10. Hannah: Thanks for writing. Your perspective is so important as you work with the very population that growth attenuation affects. I am certain you have seen much in your happy that you can have such respect for your charges.

    Sadly, growth attenuation is alive and well in the USA, certainly, but it's very hush-hush. Certain elements...the not done, but, boys and girls are getting the "treatment"...and parents are falling for all the promises made about it...with no science to back those promises up. It's the saddest thing in the world to me.

  11. God forbid, if I were suffering from the same problems as Ashley X and I had to choose between a) becoming physically larger and growing a beard, but spending a lot more time in bed owing to the practical restrictions on transporting me with any great frequency and over any great distance; or b) remaining small and never becoming an adult in a physical sense, but being taken on picnics with my family, being in the garden with them, experiencing different locations within the house and being taken out into the fresh air, then I certainly know which option I'd pick!

    I'm sorry to say that it seems as though few people are genuinely trying to empathise with the child herself; instead, many are throwing their hands up in horror on the basis of a reaction that stems entirely from their perspective as a fully functioning adult. Of course, the kicker here is that we can't really know how aware or otherwise the child is of herself and her surroundings, and therefore we can't truly know what she would want. However, for me, that is not a justification for doing nothing when doing nothing would most likely lower her quality of life and increase her discomfort. Sometimes caring for someone means having to make decisions on their behalf; of course it would be better if that were not the case, but unfortunately it is the case, and I think it would be preferable if these decisions were made on the basis of the child's happiness and comfort, not on the basis of their adult carer's own particular moral standpoint.

  12. She doesn't know, so how would it matter? She only has conscience of pain, and probably emotion, yet isn't able to speak. She wouldn't care whether or not she was made to stay in a childlike form for the rest of her life - it is better, as her family has a history of large breasts which cause discomfort, and bedsores are less likely to develop.

  13. My son is 24 years old, 6 feet 2 inches tall and over 200 pounds. I still stand by my decision that the Ashley treatment is horrific and should never be done to any person. My son is a happy and healthy young man. He looks fantastic. And yes, while these kids may be severely developmentally delayed, they know what's going on. Don't kid yourself. That's just an excuse for people to be able to do what they want to do. It is not their right to do that to any child. These kids were born disabled, they weren't born second-class citizens. No one has the right to treat them any different than any of us are treated. Performing The Ashley treatment on any individual should be a criminal act.

    As for my son, he is very physically disabled but also a very happy young man. My son needs to be propped up in a chair and I need to use a hoyer lift to move him from the chair to the bed; he uses a hospital bed. I need to turn him over at regular intervals since he cannot turn himself over. I need to position a pillow between his knees and a pillow between his hands and adjust his hands, his legs, his hips and his shoulders in order for him to sleep on his side at night and not choke on his secretions. The pillows help prevent bed sores as does regular turning . It is not a big deal and yes it is a lot of work. He doesn't have much use of his hands or his arms so he is not able to help himself in any way. He does have a feeding tube but a few years ago I took him off of the formula since it contained high fructose corn syrup and I've been making all of his food from scratch and blending it up in a blender. I researched superfoods and created my own diet for him that is high in fiber and rich in nutrients. He gets 15 servings of fruits and vegetables every day (along with protein, carbs and omega-3s). I use as much organic food as I can afford. It's a lot of work to make three meals a day from scratch but his cognitive ability soared once I did that. I started him on Now Foods organic coconut oil and give it once a day and that prevents colds, flu and pneumonia. My son has only been hospitalized once in the last five years. Yes, it takes a lot of work to care for a severely mentally and physically disabled young man but our quality of life is very good. My son is happy. I am happy. It is a pleasure to take care of him. He likes people, he likes music, he likes getting out and he likes doing things. Yes, everything is harder than if somebody could walk however that's not what we have here. I also know that there may be times when I need to hire somebody or have somebody help me out with certain things. I don't think that's a big deal. All of us need help at some time or another, some kids just need more help than others. I hope people who are looking or considering the Ashley treatment will contact me or at least try to understand why this treatment is not right. If you want to see what he looks like now, you can always go to my blog to see pictures of him. And for the record, he still doesn't have any bed sores. His doctors say that his father and I take great care of him. While I am divorced and do all of the care giving his father is actively involved in his life and takes/sees him regularly . He is the nicest young man you would ever meet. Life is good. And yes, I plan on caring for him the rest of my life.

    1. AMEN Dream Mom. I am honored to have your response here on my blog. You were one of the first blogs I found that dealt with severe disability. Bless you and your son and your good work. I have two severely disabled daughters now! One is my new step-daughter. Both my girls are in their early 20's. I am happy that they get to be grown up women bodies that grew with them.