Sunday, January 14, 2007

Open letter to Nancy Grace

Dear Nancy Grace:
I do not normally watch your show on television. However, I happened to turn it on last night while you debated the ethics of the Ashley Treatment, which I wrote about recently (Always be my baby?, January 6th, on this blog). You had a lot of opinions about it, and you were quick to dismiss opposing opinions.
"Lawrence [Carter-Long, long-time advocate for the rights of people with disabilities], let me be bold. My expertise is in a court of law, and this is very beyond that expertise. But instead of changing the patient, removing her breast tissue, removing her uterus, cutting out her appendix just in case she might get appendicitis one day, stunting her growth at 4 feet, 5 inches, 75 pounds, why don`t we change the way she`s treated?
I know on Court TV today, I spoke to a victim of a shooting, and she is a quadriplegic. She can`t move anything as a result of a bullet going through her neck, nothing. She can`t move. She was very much like Christopher Reeve. Why can`t the treatment for this so-called "angel pillow" -- it sounds like a little toy, not a person -- this angel pillow - - why can`t the treatment be changed instead of doing all these procedures to this child?" [Ms. Grace later corrected herself - the term 'angel pillow' should actually say 'pillow angel', a term referring to those with disabilities where they must spend much of their time sitting or lying on a pillow.]
Ms. Grace, changing the patient, in this particular case, is how the treatment is being changed. And what does this quadriplegic have to do with Ashley's case? The woman you are talking about still has a grown woman's mind. She already has a full-grown woman's body. If this is the woman I believe you are talking about (Heather Grossman - I'm not one-hundred percent sure, but she was the only woman I could find in the CourtTV archives who had been paralyzed after a bullet severed her spine), she has some method of communication, as she (according to your quote) spoke to you and (according to the article) is expected to testify in court. Ashley, however, has the mind of a three-month-old, the body of a nine-year-old, and has no method of communication other than crying ("It is common for Ashley to be uncomfortable or to be bored. Even though Ashley’s level of tolerance has increased along the years, she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts." - Ashley's parents, according to their blog).
"We need to change our opinions of people with disabilities. We need to really look at the deeper issues, the failure of our health care system, for example. No one is going to tell you that the raising and caring of a child with severe disabilities is easy, but even if it isn`t safe or easy, it`s much more palatable than carving up a child because she -- for the sin of growing up. So I think what we need to do is really address our prejudices about disability and get to the bottom of those so tragedies like this don`t happen." - Carter-Long.
No one said that caring for a disabled person is easy. I grew up in a school where there was at least one autistic child who could barely talk and had a hard time walking, three girls with cerebral palsy (one who had to use a walker and two who were in wheelchairs), and many students with mental handicaps. I go to church and am friends with a girl who has cerebral palsy and has to wear leg braces and occasionally use a walker or a wheelchair. Not far from my home is a boy who was the victim of a very serious sports injury- he is now confined to a wheelchair, can't walk at all, can barely talk, has the mental capacity of a young child, and requires at-home nursing care. I have seen the varying degrees of difficulty that these people and their loved ones have had to overcome to have a good quality of life.
At least one of the wheelchair-bound girls had to have a hysterectomy because she could not handle the strain of having a menstrual cycle and did not have the physical strength to ever bear children. Was it cruel to prevent pain in someone who suffered it needlessly? This girl was also tall, large-breasted and somewhat overweight. This caused her quite a bit of discomfort- she did not like being strapped into her wheelchair because it was uncomfortable, but without the straps the weight of her body caused her to slouch, which is bad for the back. Would it have been 'carving up a child' to have her breasts reduced in size or removed so she could be more comfortable in her chair? Would you not agree that her life would have been more comfortable if she were shorter and not as heavy? This girl had no way to go into building that, for whatever reason, were not easily handicap accessible.
There is a boy I see at church who has a disability (I don't know what it is), and it causes him to have a very hard time walking and to need to be in a wheelchair most of the time. However, it has also stunted his growth so that he is roughly the same size as Ashley. Because of his small size, he can do many things that other wheelchair-bound people can't do. If a building doesn't have an elevator or the elevator is out of order, his parents can carry him up stairs. He can easily be moved onto a bed or a couch. He can get through small walkways and such with relative ease. He can live a more active life simply because of his size. After seeing him, I can understand Ashley's parents' decision to keep her small- it makes her life more eventful simply because it is easier to include her. How is that cruel?
Ms. Grace, you went on to speak with Dr. James Hughes. You became very upset when he spoke of 'sanctimonious criticism' of Ashley's parents's decision, pointing out that you have personally cared for a disabled adult male. You shot down his claims, saying that "everyone has their burden to bear", and cut to the phone lines. Yes, everyone has their burden to bear. So why is it wrong that they bear their burden in the way they (and the many doctors and specialists they consulted with, as well as the ethics committee that approved it) see as the best option for their daughter?
In answer to a caller's question of whether Ashley's treatment could be called a crime, you and two lawyers agreed that it would be near impossible. When one of these two men (Richard Herman) went far enough to say that it was the right decision for Ashley's situation, you cut him off and when back to Mr. Carter-Long and asked him why there was something wrong with an adult handicapped person.
What I fail to understand, Ms. Grace, is where you got the impression that anyone thought that a handicapped adult is, in your own words, "the most odious thing on our planet". If you look at the facts of the situation, it is clear that Ashley's parents do not feel that way; they simply want Ashleys journey into and through adulthood to be as comfortable as possible. Your argument would seem to suggest that size and sexualization are what make a person an adult. Well, what about people who live with dwarfism? What about men and women who are infertile? Are they any less adult than you or I?
You went on to ask "I mean, are we that threatened by an adult female with breasts and a uterus that is handicapped?" Who has said anything about being threatened by Ashley? What I feel threatened by, and what I believe others who support Ashley's parents feel threatened by, is the fact that there are so few options for handicapped people. This country is the 'land of opportunity', a place where people have the rights to 'life, liberty and the pursuit of happiness.' Her parents are trying to keep her alive, to make her as liberated as possible, and are pursuing her happiness as best as they can. How does that step on her rights as a human? This treatment gives Ashley options that so many like her will never have.
Mr. Carter-Long replied "I think, in looking at this child`s best interest, there`s no immediate urgency in this case. This child`s life was not in danger. All of these things were done for a matter of convenience, or what they thought might happen at some point in the future. We`ve got all sorts of unknown risks and permanent consequences to this child here, which somebody needs to be accountable for." Well, when does a handicapped child's quality of life become urgent? When she's ten? When she's sixteen? When she's eighteen? Yes, the procedure is a matter of convenience, but mostly to Ashley. She will always be able to, as I have said before, take part in things that she would not be able to take part in because of how big she would have gotten. She will be more comfortable without the pain of cramps and the messiness of a period- especially because either way, she would never have children. She will not have the discomfort of large breasts. Not to mention other benefits of the procedures she has been through. As far as unknown risks and side effects, just look at the facts on Ashley's parent's blog. They defend the growth attenuation with this statement- "This treatment was performed on teenage girls starting in the 60’s and 70’s, when it wasn’t desirable for girls to be tall, with no negative or long-term side effects. The fact that there is experience with administering high-dose estrogen to limit height in teen-age girls gave us the peace of mind that it was safe—no surprise side effects. Furthermore, people found justification in applying this treatment for cosmetic reasons while we were seeking a much more important purpose...". Regarding the appendectomy (which was performed at the same time as the hysterectomy), they said, "there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley’s appendix acts up, she would not be able to communicate the resulting pain. An inflamed appendix could rupture before we would know what was going on, causing significant complication."
They went on to say, "It was obvious that a reduction in Ashley’s height (and therefore weight), elimination of the menstrual cycle, and avoidance of large breasts would bring significant benefits to her health and comfort. The only downside that we could think of was the surgery itself; however, the involved surgery is commonly done and is not complicated. Furthermore, we’re fortunate to have access to one of the best surgical facilities and teams at Seattle Children’s Hospital. If we were in a less developed locale or country with higher risk of surgery, we would have looked at this part of the analysis differently."
Mr. Carter-Long posed the question "I want to know why people with disabilities weren`t addressed in this matter and why we left it to the ethicists...". Who exactly should be addressed in this case? The only people who could truly understand Ashley's issues would be the people who, like her, are infant minds trapped in adult bodies. How do you ask someone with the communication abilities of a three-month-old baby to tell us how they feel about their body?
You spoke to Psychoanalyst Bethany Marshall about Ashley, and she said this: "When you subject a patient to any form of treatment, especially an invasive one like this, you want to make sure there`s a verifiable treatment outcome. And I want to tell you what the dad said in his blog about one of the reasons he had the breasts removed. "Large breasts could sexualize Ashley towards her caregivers, especially when they are touched while she is being moved or handled, inviting the possibility of abuse." That is not a verifiable treatment outcome for removing breast tissue. That`s saying, If we let her have breasts, she might possibly be abused in the future, and that`s not why you treat patients in this invasive sort of way.And by the way, this is the biggest problem that the ethics committee had was the removal of the breast buds. So yes, it`s difficult for the parents, it`s tragic, but we really have to think about patient care and scientific outcomes in a case like this."
If you look at the section of the blog that this quote from Ashley's father falls under, you will see that it is taken out of context. The section is titled "Preventing Breast Growth by Removing the Early Breast Buds". The reasons given for the surgery are the facts that she will never need her breasts to feed a child, as she could never have children of her own; there is a high likelyhood that she would have large breasts, something that would make her life much more uncomfortable; and by not having breasts she can be much more easily and comfortably strapped into her wheelchair, bath seat, and stander. It goes on to point out " is a simple procedure when the breasts are still undeveloped. This operation involved removing Ashley’s subcutaneous, almond-sized breast buds, which contain the milk glands, while keeping the areolas and nipples intact. This surgery was done with small incisions below the areola, the slight scars almost disappeared a month after the surgery. This operation is akin to removing a birthmark and is a very different surgery from a mastectomy on an adult woman with developed breasts. Furthermore, when done in conjunction with the hysterectomy this step poses little to no additional recovery time or surgery risk (for example, anesthesia is done once)." After stating all of this, it goes into a sub-section listing the 'fringe benefits', if you will, of this procedure as avoiding the possibility of fibrocystic growths, which run in the family; avoiding the possibility of breast cancer, which also runs in the family, and the aforementioned possible sexualization by her caregivers. These three reasons were NOT the main reasons for the breast removal- only added benefits to the main reasons.
Ms. Marshall went on to say "...if she weighs less, yes, she`ll have fewer bedsores. That`s a verifiable treatment outcome. However, that they won`t be able to cart her from room to room -- that`s not a verifiable treatment outcome because why don`t they just build a bigger apparatus so that they could do so? So I don`t think that these surgeries were well- advised, I think they were ill-advised, because the outcomes were not scientifically proven." She seems to be arguing for both sides here- she first says that there is a scientific argument, and then says there isn't. Well, which is it? I think the main problem here is the assumption that every single statement on Ashley's parents' blog is meant as scientific reasoning behind their decision. That isn't so. They list the scientific reasons, as well as additional benefits.
Allow me to explain. If I were to say, "I drink milk because it is healthy and it tastes good," you could scientifically prove that milk is healthy. However, you could not prove that milk tastes good. You might even tell me, "Well, why not drink orange juice? It's healthy and it tastes good." Just because you can't scientifically prove every single statement does not make an arguement invalid. Ashley's parents have gone to great lengths to show the benefits and the risks of their decisions, as well as the emotional side of things- they are talking about their daughter, after all, and there is a very strong emotional investment in her welfare.
Ms. Grace, you asked Dr. Hughes about Ashley's specific condition. Beyond what we know of static encephalopathy in general, all that could be said was that her mental condition would never change. Dr. Hughes pointed out that she would never be able to make her own medical decisions, and just like anyone who is similarly handicapped, she would have to have a caregiver make those decisions for her. The show cut to a commercial and there was no response made to these points by Dr. Hughes. Why? Is it because there is no arguement?
After the commercial break, you spoke to a caller named Betty from Indiana. Betty had this to say: "To be perfectly honest, I really strongly support the parents` decision in this, and I`ll tell you why. My child is now 13, and started her menstrual cycle at the age 11. And she`s had a really, really tough time every month with these periods -- extreme pain, discomfort, which we have to try to manage. And I realize that normal healthy kids have the same thing. The difference is, with this child, she can`t tell us when it hurts or how it hurts. And we just do our best to position her. I`ve had two options with regards to her menstrual cycle, which is, one, to put her on the pill, or number two, to give her Depo-Provera shots on a regular basis, which stops the periods altogether. The reason we`ve opted not to do those is, with the pill, you have blood clot issues in the legs, and with the Depo-Provera, you have bone density loss.
At this point, there was another commercial break. You returned, and Betty continued: "I do [have a child similar to Ashley], and she`s 13. And I told you the reasons that we didn`t choose to put her on the pill or Depo-Provera, because when they don`t have much movement, they have chances of blood clots in the legs, which could cause a stroke in these children. And the Depo-Provera is bone density loss issues. And she`s only 11, so her bones are still growing, so that was a critical issue, for breakage. So -- and with regards to the breasts, I will tell you that my child started her period and her breasts have grown. She`s very uncomfortable. It`s a very difficult time sometimes because..." There was another commercial break, and that was all we heard from Betty. Why did you not let her finish, or at least ask her to wrap it up for time reasons? Because she was living the very thing that Ashley's parents are avoiding, and fully supports their decision?
After the break, you spoke to Mr. Carter-Long again, pointing out that he was once the poster-child for cerebral palsy. He pointed out that the American Association on Intellectual and Developmental Disabilities has issued a letter denouncing Ashley's treatment. [I have so far been unable to track down a copy of this letter, if anyone knows a link to it I will post it here]. He claimed that solely because she had to have these procedures done to her, there can be no benefits to this method of treatment, and that because all of the tissue was functioning, it should have been left alone. He went on to say "The bottom line here has to be our prejudices about disability, our unfamiliarity with disability. If we don`t come in contact with people with real disabilities in our lives, then we assume that their quality of life is going to be less. That`s easy to do when you`re sitting in a room somewhere in Seattle pontificating about this, but they have disrupted this child`s life and irreparably altered it. And I think that those issues deserve serious discussion, such as we`re doing here today."
Now, Ms. Grace, I can understand how one could be against the decisions made by Ashley's parents. But for Mr. Carter-Long to assume that there was no serious discussion about this decision among the ethics committee and other medical professionals involved and that the right decision can be reached only because he and you are having a serious discussion is simply ludicrous. Yes, this child's life was altered- for the better. You simply cannot argue that an immobile life is better quality than a mobile one, or that an uncomfortable life is better than a comfortable one. How much suffering do you and Mr. Carter-Long want this child to go through- a few years of surgeries and treatments, or a lifetime of pain and boredom?
You, Jean Casarez, and Ms. Marshall went on to question whether the parents wanted her in a child's body simply because (in your words), "It`s easier to love a child with a baby`s mind in a baby`s body, but if they might feel that it`s more difficult to love a being that has a child`s mind and an adult`s body." After pediatrician Jeffrey Brosco pointed out that those who haven't been through this kind of situation shouldn't pass judgement, you said "Well, I`m being very careful about making a judgment on this. This isn`t like reading the statute and applying it to a set of facts in a criminal courtroom. This is a very, very difficult matter." Ms. Grace, I don't know if you are aware, but you have been making judgements about this. You have made it very clear that you think the treatment is wrong and that the parents made it for selfish reasons. If you're going to pass judgement, don't try to hide it with a statement like that, which seems like a silly cover-up.
When asked whether there will be an investigation, your lawyer consultants said no, that there was no crime to investigate. You turned to Carter-Long to ask if there should be an investigation. He responded, "Absolutely. I think we need to be investigating our ethics and our morals as a society that we could allow this to happen and that we could put the life of this child in the hands of people that would allow her to be mutilated. I mean, let`s not mince words here: That`s exactly what has happened to Ashley. And we as a society have to atone for that fact. This gets to the bottom of the issue. If children are not able to be properly cared for at home, it shows us that our health care system is broken. What we need to do is fix our health care system to provide people with the support." Honestly, what kind of statement is this? This child is being cared for at home. This girl, because of several surgeries that don't take away anything she couldn't use anyhow, can be cared for at home for a much longer period of time than she would have been able to otherwise.
You gave Dr. Hughes the last word, and I do commend you for leaving things with this thought - "Well, I completely agree that we need to change our health care system, but I don`t understand what the complaint is. I don`t see any disability bias in this case. I see loving parents. If you read the blog, you see loving parents who are doing an extraordinary job to keep their child with them and to care for her for the rest of her life. And I think that that has to be commended by us all."
Ms. Grace, I don't know how anyone could argue that a few simple surgical procedures could be wrong when they so drastically improve this child's life. Thank you for featuring this issue and making more people aware of it through your show. But please, look at both sides of the issue before cutting down Ashley's parent's decision. I'm sure that if you really look at it, you will see that they did the right thing.
Please don't think that I am saying this is the correct decision for every disabled child- far from it. If you look at my first blog about this situation, you will know that I do not feel that way at all, but that I believe that a decision like this is only appropriate in some situations after much thought, research, and consultation with medical professionals. As Ashley's parents did all of this, I support them in their decision.


Saturday, January 6, 2007

Always be my baby?

I'm sorry that the blogs aren't coming very often yet- they will come out more regularly soon!

Ashley is nine years old. (Picture is from 12/06) She has had no mental development since the age of three months. She is confined to either being strapped into a wheelchair or lying down all of the time. She can't lift her own head or roll over by herself. Her parents, in an effort to give her a comfortable life, have opted to do several things.

First, they used hormone treatment to prevent her from growing more than four and a half feet tall and from weighing more than about seventy five pounds (as opposed to the five and a half feet tall and one hundred twenty five pounds she was expected to weigh- a difference of about one foot in height and fifty pounds in weight). This is supposed to keep her small and light enough that she can be moved easily and to prevent bedsores. Because of her size, she can be moved around more often than most 'Pillow Angels', which makes life more interesting for her. Being more mobile is also a health advantage, as she will likely have better circulation, a better functioning digestive tract, and more flexibility because of it, as well as several other major advantages.

Secondly, a hysterectomy was performed, so that she would not have to suffer through menstruation and all of its symptoms. This procedure prevents her from ever having children, but because of her physical and mental state, she would not be capable of childbearing or caring for a child anyhow. She will also never be able to get uterine cancer. During this procedure, her appendix was also removed. Because Ashley cannot relate pain to others, if she had appendicitis, no one would know and the appendix could eventually rupture, which is deadly.

Thirdly, they prevented her breasts from growing by removing the early breast buds (this is not a mastectomy, as the breast tissue has not developed yet. Breast buds are about the size of almonds and contain the milk glands- the procedure is similar to a procedure used to remove birthmarks). Large breasts run in the family and would cause respiratory discomfort if allowed to grow. They would also get in the way of protective straps on her wheelchair, stander and bath chair. As an added advantage, because Ashley has no breast tissue, she can never get breast cancer (which also runs in the family). This procedure is often done on boys who will need high-estrogen therapy later in life.

The highly debated question is, of course, the ethics behind this method of treatment. Should parents be able to make these kinds of decisions?
My opinion is yes and no.
Through the ages, people have used medicine to enhance the quality and length of their lives. In many cases, people have to remove parts of their bodies- such as in cases of certain cancers, gangrene, some injuries, and other things. Even in cosmetic surgery, people have fat and breast tissue removed. As far as the hysterectomy, appendectomy, and breast bud removal, I believe that Ashley's parents have made a good choice. These three things are all common surgeries that are being used to aid in Ashley's health and comfort. I believe the same thing about the not-so-common choice to stunt her growth. This procedure makes her able to have home care, something that many bed-ridden patients can't have- and helps prevent her from becoming bored.
This is the yes part of my answer.
The no part is saying that this procedure is NOT for all disabled children. Every disability is a little different, and these methods that are for Ashley's greater good are not going to help every disabled child- they could actually hurt them. As long as parents approach this kind of a decision carefully and with the help of several trustworthy doctors (As Ashley's parents did), they should be able to figure out what is the right thing for their child.
The ultimate goal is that every person should live as fulfilling of a life as possible. That is what Ashley's parents are making possible for her. They aren't asking for your money or help, or even your opinion. They just want they're child as happy as possible. Who are they hurting by doing that?


Monday, December 18, 2006

Ready for what, exactly?

Michael McAuliff reported today that America was more ready for a black president than for a woman president. According to his article, 86% of registered voters would back a qualified woman nominated by their party, while 93% said they would back a black person. However, only 55% think the country is ready for a woman president, and only 56% say that we are ready for a black president.What is this? What does it mean for America to be ready for a black or female president (or a black female president, for that matter)? Blacks and women can both go to college, get jobs, join the military, and do pretty much all of the same things as any American can do, so why make somebody's gender or skin color a political issue? We're as ready for a female or black president as we are a white male.When John F. Kennedy was elected, the country asked if we were ready for a Catholic president, for fear that the Pope would run the country through him. Today, Kennedy is considered to be one of the most admired people of the twentieth century. People didn't even question whether we were ready for a handicapped president when they elected Franklin Delano Roosevelt, who was bound to a wheelchair due to what was believed to be polio (a recent study showed that he was most likely suffering from Guillian-Barre syndrome). If Catholics and the physically challenged, two very large special-interest groups, can win the presidency, then why should we worry about women, or blacks, or any other capable candidate of a minority group?Puting emphasis on minorities, no matter if the intentions are to help or harm them, eventually serves to single them out as different. There are certain times when physical differences have to be taken into account (for example, a person with an illness that makes them faint when they are stressed shouldn't be a soldier, they would only hurt themselves and their fellow soldiers), but if it's not necessary, it should be ignored.So, ignore the gender and skin color of the presidential candidates in 2008. Instead, focus on the candidates competency and their stances on the issues that are important to you.


Tuesday, November 28, 2006

Welcome to History on Repeat!

" 1884, for all intents and purposes, we had depleted our stock of original ideas."
-- Libris, chapter 11, "A Well of Lost Plots" by Jasper Fforde
"Those ignorant of history are doomed to repeat it."

This is a phrase often uttered by my mother. Until I started watching the news, reading the newspapers (something we are in no short supply of, my father reads five newspapers a day), and making an effort to understand my surroundings, this was a silly cliche to me. Not anymore.
Every day, we see more and more examples of the vicious cycle of time. We look at the happenings around us, and the doings of our religious leaders, political leaders, educational leaders, economic leaders and whatever other kinds of leaders we come across, and we say, "Oh, it's just (insert name of past mistake by different leader here) all over again." Except now, we have the internet to spread the news faster and farther than ever before.
This blog is my attempt to make sense of some of the madness in today's world. I want to look at the present, and even the future, through the lenses of history, and see if I can't use 20/20 hindsight to clarify events of today and tomorrow.