Do retarded children deserve to live?

Note: Throughout this post, including the title, I use the word “retarded” with the goal of showing the harsh reality of how our culture treats individuals who are wrongly viewed as somehow less valuable to society. It is in no way my intention to promote the term, which is used as a derogatory label. For more info, please visit this site to learn more about People First Language.

Do retarded children deserve to live?

Does that question bother you? Does it make you mad? It should. But tragically, that question reflects the reality in our society. Our country is waging war against the “unwanteds” of society. We use the term quality of life to set artificial boundaries around when someone deserves to live. It’s ironic that the quality of life argument is almost always used when one person (or entity) is deciding for another person (or group) if they may live or die. We claim we’re worried about whether the person in question can lead a happy, fulfilling life. We presume we’re being compassionate by deciding for them that their life won’t be good enough and sentencing them to death as a preferable alternative.

This website describes the true story of a three-year-old girl named Amelia. She has Wolf-Hirschhorn Syndrome, meaning she has been labeled mentally retarded and brain damaged. A hospital in Philadelphia decided she didn’t qualify for a kidney transplant “because of her quality of life; because of her mental delays,” according to the doctor. Not only was she ineligible for the waiting list for a random donor, the hospital would not perform the transplant even if her family provided its own donor.

The hospital has decided for Amelia and her family that her “quality of life” is no good. So bad, in fact, that she deserves to die.

This is Amelia. She looks like a happy little girl to me. And her story is not unique.

Statistics show that 90% of pregnant women who are given a Down syndrome diagnosis choose to abort. Is that not astonishing? Many think it would be wonderful to create a world in which no children are retarded or disabled. But instead of (or in addition to) efforts to prevent retardation, we seek to exterminate anyone who falls short of our standards. For children like Amelia who aren’t aborted, there is a movement in the medical community to simply “let” them die. We will find ways to get rid of our “unwanteds,” if not before birth, then after.

Our demand for perfection drives us to constantly expand our definition of those who we say have an unacceptable quality of life. Go back to my initial question. It is asked of so many in our society.

  • Do retarded children deserve to live?
  • Do physically handicapped children deserve to live?
  • Do unplanned preborn children deserve to live?
  • Do feeble elderly people deserve to live?
  • Do poor people deserve to live?
  • Do minority people deserve to live?

Wait,  you might say. Who is trying to kill poor and minority people? Some things are overt, others are covert. When we place different values on different people, it is not long before we begin justifying the elimination of those deemed less valuable. I assure you, it is already happening.

Are you comfortable with the standards we have set for quality of life? The standards keep changing. Fewer and fewer people fit the bill. Maybe you think people who are severely handicapped are better off dead. How do you decide what is severe? What about my mother-in-law who has MS? She would be helpless without a wheelchair. Would you kill her? Maybe you think people who require life support or a feeding tube are better off dead. How do you decide how much medical intervention is too much? What about my stepdad who has diabetes? If you took away the medical intervention of insulin shots, he would die. Would you kill him?

If we continue to accept the notion that we can define another person’s quality of life and kill or “let” them die if they don’t meet our standard, it may come to the point some day where we kill people with MS or diabetes. Do  you think I’m being extreme? It’s ridiculous to think that we would allow such a thing. But isn’t it ridiculous to let three-year-old Amelia die because she has Wolf-Hirschhorn Syndrome? The culture of death is already ridiculous. We are there. What are we going to do about it?

I’ve been criticized in the past for comparing abortion to Hitler’s Holocaust. Alongside the Jews, Hitler killed the elderly, the feeble, the handicapped and the retarded. Those who refuse to learn from history are forced to repeat it. These tragedies are never obvious from the start, or we would be better at preventing them. They start with beautiful sounding lies. No more disabilities. No retardation. Every child a wanted child. A pure race… You see? It’s all connected. A culture of death will not self-regulate or hold itself to any moral standard. We must step up to stop it. How much bloodshed will it take before the world cannot stand this Holocaust any more?

Yesterday we celebrated Martin Luther King Day. Dr. King was a wise man, an activist, a minister, and a true hero. I have no doubt that if he were alive today, he would be on the front lines of the movement against this culture of death.

“Moreover, I am cognizant of the interrelatedness of all communities and states…Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” -Dr. Martin Luther King Jr.

We may sit comfortably at home and ignore these issues while they do not affect us directly. But the tide of death will swell and overtake us. The day these things affect us directly may well be the day it is too late for us to raise our voices in the defense of life and liberty.

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About Nicole

Daughter of God, wife, mother, volunteer youth leader, substitute teacher, aspiring writer, rabbit owner, nature lover. These are some of my titles.
This entry was posted in Life as we know it, News and tagged , , , , , , , , , , , , . Bookmark the permalink.

21 Responses to Do retarded children deserve to live?

  1. Liz says:

    Thanks for writing this Nicole. I was dumbfounded when I read that article this morning. I think we should be shouting this kind of injustice from the rooftops. Life is precious, and humans have no right to decide whether another person is fit to live or not. All the rights and privileges we have in this country and many of the laws we have are based upon the idea represented by those three little words. Life is precious. If we take away that starting point, we travel down a path that never ends in a good place.

  2. Dan O'Day says:

    I know of at least two parents who were told their child would be born mentally handicapped and chose to have the babies anyways, and both children are just fine. Thanks for sharing and for highlighting this Satanic idea that we can determine quality of life and justify murder as a result.

  3. Kevin says:

    Nicole- I am the creator of the wolfhirschhorn.org site and I didn’t approve your comment. Part of the issue is that the word “mentally retarded” was used. One goal for the parents and community of WHS is to rid the world of that phrase.

  4. Megan says:

    It might not be a word we like to read or hear, but the essay about Amelia uses those exact words, “Mentally Retarded,” even as the words that were on the doctor’s paper. I think this is a great blog, Nikki. Your use of those words, I think, is important. It draws attention to the way these children, and others, are treated in the medical community.

  5. Sean says:

    If you find this interesting take a look at the history of eugenics and look at America, we forcibly sterilized 60,000 people and the Supreme Court upheld it in 1927. Eugenics is the “applied science or the bio-social movement which advocates the use of practices aimed at improving the genetic composition of a population.” Indiana, Mississippi, and Montana require a blood test prior to marriage to check the blood for STD’s but there is often the option to screen for genetic compatibility. It was through eugenics that we developed gene screenings to try and counter the prevalence of disease. And with the rise of new technology and screening techniques eugenics or people wanting “designer babies” the next few decades could be very interesting in terms of discussion and what’s going to happen.

    Take a look at this quote and try and guess who said it “Society has no business to permit degenerates to reproduce their kind…. Some day we will realize that the prime duty, the inescapable duty of the good citizen of the right type is to leave his blood behind him in the world, and that we have no business to perpetuate citizens of the wrong type.” Are you thinking some Nazi doctrine spewing fool it was actually Theodore Roosevelt who wrote that. But the Nazis did end up twisting the entire idea as well other racists’ factions around the world. And the idea for sterilization in Nazi Germany unfortunately came from the US and Nazis cited our forced sterilization of 60,000 people during their war crimes trial in Nuremberg.

    My stance:
    I am against compulsory eugenics and against the hospital in their refusal to perform the surgery if a volunteer came forward, however I stand behind their decision to not allow her on the list. And so you don’t think I don’t know about how personal this is, my grandmother died. She was on the list for a liver transplant but when her cancer took a turn for the worse, she was no longer eligible for a transplant. I support the doctor’s views in giving organs to people who can benefit society, for it was somebody in society whose gift to give their organs up will save a life. And the doctors are only trying to do the most good they can with a limited number of organs.

    And one last thought a question… If before you or your spouse became pregnant the doctor said there was a 66% chance that your child would develop a fatal disease, what would you do? Would you take the chance and exert your selfish need to have a child to become a mother or father and risk a child dying an early death? Or would you would adopt a child in need and provide for them and be a mother or father to a child in need?

  6. Nicole says:

    Kevin,
    I understand your concern and appreciate your feedback. My intent was to use “mentally retarded” in the same way that Amelia’s mother used it, to expose both the cruel use of the term and the use of “quality of life” to devalue precious individuals. I was mindful when I introduced Amelia to primarily describe her as a three-year-old girl. I secondarily explained that she has Wolf-Hirschhorn Syndrome, and lastly I said she was LABELED as mentally retarded. I intentionally did this to show that the medical community placed this label on her and how such a label has become a means of denying her the right to a transplant.

    Throughout my post, including the title, I used the word “retarded” with the goal of showing the harsh reality of how our culture treats individuals who are wrongly viewed as somehow less valuable to society. It was in no way my intention to promote the term.

    Perhaps I should place such an explanation within my post and/or include a link to a site like this one: http://www.disabilityisnatural.com/explore/pfl explaining people first language and the dangerous power of words. Would that help?

    I would love additional feedback and suggestions for you. I want to be on the same team. Thank you so much for your time.

  7. Nicole says:

    Sean,
    Thanks for your comment and your question.

    First, I want to be clear about your scenario. You are referring to making this decision BEFORE becoming pregnant. This is a very important distinction. If you were talking about making such a decision DURING pregnancy, it would be totally black and white. Abortion kills an already living child, so it is never an unselfish solution (or any solution at all) to the risk of a fatal disease. But since you’re not talking about abortion, there’s plenty of room for discussion.

    Adoption is a wonderful option for couples who can’t get pregnant, couples for whom the risks of pregnancy (for mother or baby) are too high, or just for couples who feel called to provide loving homes to children in need. However, I would not make a blanket statement that it’s selfish for a couple to get pregnant if there’s a statistical risk that their child would develop a fatal disease. Here are my reasons:

    1. Statistics are often wrong. In your scenario, if the doctor is right, there is a 34% chance of conceiving a child without the disease. Beyond that, even prognoses that are considered 100% certain are often wrong. As progressive as medicine is, it isn’t perfect. I personally know more than one person who by all medical indications should have died, but they are alive. About 14% of American pregnancies end in miscarriage. According to the CDC, the U.S. infant mortality rate is 6.75 deaths per 1,000 live births. The argument could be made that every couple is selfish to even try because of the risks. I wouldn’t tell a parent they are wrong to give life a chance.
    2. I believe that all human life is precious and worthwhile, regardless of its duration or the amount of struggle involved. Ask someone who is dying if they wish they had never lived. Most are glad to exist. Think of children who die young for any reason. Their short lives are worthwhile not just to them and their parents, but to friends and family and other people who get the chance to know them. Yes, it is tragic when they die. But that doesn’t mean it was selfish to want them to come into existence.
    3. I believe in a sovereign, loving God who plans out our lives and has purpose for every person who will ever exist. I believe whether someone lives one day or 100 years, God has the ability to do great things through them. I also believe that if the couple in your scenario feels called to submit to God’s plan by not using contraception, they are making a very unselfish decision. They are accepting the possibility of the financial expenses of caring for a sick child and the incredible emotional pain of watching a beloved child get sick and die. I would not call them selfish.

    It is an entirely different scenario if the couple does something that causes the risk. Specifically, I am thinking of in vitro fertilization and certain fertility drugs. Check out my previous blog post, Managing the Commodity Called Life. If a couple is unable to get pregnant naturally and they take drastic unnatural measures to force pregnancy knowing these measures carry significant risks for any children conceived, then I would say they are selfish and morally wrong. In such cases, nature and God seem to indicate that for whatever reason, that woman should not become pregnant. Adoption is an excellent alternative means of achieving parenthood.

  8. Nicole says:

    Sean,
    I should add that if such a couple chose to take measures to prevent pregnancy and adopted, that would certainly be their right.

    Also, I realize you worded the question as a personal one for me to decide and I responded to the morality of the decision in general. I admit that I don’t know for sure what I would do, were I personally in that situation. It would be a very difficult decision that would require a great deal of thought, discussion with my husband and prayer. If I had to decide right now, I would choose to never actively “try” to get pregnant, but I would also not take extra measures to prevent pregnancy. This seems like the best way to leave it in God’s hands and let nature work. I would certainly look into adoption or foster care.

    I hope I’ve fully answered the question.

  9. Anonymous says:

    This is unbelievable! I am sick, sad, and angry all at once. How DARE ANYONE think they have the right to make a choice on who is “worthy” enough to live! That beautiful girl Amelia deserves to live just as much as a Harvard graduate would. Why? simple. God had made both. Is she less worthy to God? Are you?
    Almost 4 years ago, my husband Jeff was in an accident which has left him both physically and mentally handicapped. Jeff is my husband, a father to our 3 children, a grandfather to our grandson, A brother, an uncle, a son. He is loved by so many people. His IQ has now been measure at only 54. He can’t work, be on his own, and is dependent on others for most things…so I guess you can put that in the category of him not being able to “benefit society”. We are blessed that God has kept him with us. He is unaware that he is different. He still has a sense of humor, and a big heart. He makes us smile every day, as I’m sure Amelia, and other “non worthy” children and adults alike have for their families.
    I DARE anyone to tell me that Jeff is less worthy to live than anyone else. God didn’t Mistakenly create anyone! Weather they never lived outside the womb, only lived for 1 minute, lived 100 years, have a 170 IQ, or a 17 IQ,,, We were ALL created and Loved by God.

  10. Kim says:

    This is unbelievable! I am sick, sad, and angry all at once. How DARE ANYONE think they have the right to make a choice on who is “worthy” enough to live! That beautiful girl Amelia deserves to live just as much as a Harvard graduate would. Why? simple. God had made both. Is she less worthy to God? Are you?
    Almost 4 years ago, my husband Jeff was in an accident which has left him both physically and mentally handicapped. Jeff is my husband, a father to our 3 children, a grandfather to our grandson, A brother, an uncle, a son. He is loved by so many people. His IQ has now been measure at only 54. He can’t work, be on his own, and is dependent on others for most things…so I guess you can put that in the category of him not being able to “benefit society”. We are blessed that God has kept him with us. He is unaware that he is different. He still has a sense of humor, and a big heart. He makes us smile every day, as I’m sure Amelia, and other “non worthy” children and adults alike have for their families.
    I DARE anyone to tell me that Jeff is less worthy to live than anyone else. God didn’t Mistakenly create anyone! Weather they never lived outside the womb, only lived for 1 minute, lived 100 years, have a 170 IQ, or a 17 IQ,,, We were ALL created and Loved by God.

  11. Sean says:

    Hey Nicole, yes you answered my questions and provided the background and thought process behind your explanation. And I would like to apologize for the generalization on my statement for about it being selfish to have a child that comes from a personal bias about a couple I met at work.

    And where it comes down to faith, on issues like contraception my personal opinion is that God gave us a rational mind and science and we should use them but I have always leaned more to a scientific side than the spiritual side. Whereas science I understand faith is often a much harder principal to grasp.

    As for Kim I have a question for you, you have one heart and you have to choose who to give between Amelia and another 3 year old girl that doesn’t have Wolf-Hirschhorn Syndrome, both will die if they don’t get a heart so what do you do? It was someone else’s child that died to provide that heart, and doctors have to choose.
    And we as a society have given the power to choose during mass casualties events doctors and EMT’s must perform triage where they basically decided who lives and dies they go through and sort those injuries that they can save of those that are too severe to be saved in the given time frame and no resources are spent on them. I hate to be the person that says life isn’t fair but it will never be and tough choices will always have to be made. I would ask you to talk to doctors about the moral and ethical choices they have to make on a daily bases.

    You are correct in your understanding that I’m referring to before conception for the purposes of this discussion but as for the issue of abortion that is a topic that it isn’t possible to have an open discussion.

  12. Nicole says:

    Perhaps the most telling quote in the article comes from the doctor addressing Amelia’s mom. He says, “I have been warned about you. About how involved you and your family are with Amelia.” He was WARNED. That a family was involved with their daughter. Warned that they would care about decisions made for her. Warned that they would not let her die without a fight. It truly shows how low our society has sunk when a doctor has to be WARNED about a caring, loving family that is involved in protecting their loved one. How warped can it get?

    On a happier note, check out this video about a 25-year-old man who is a successful restaurant owner despite this hard economy. He happens to have Down syndrome. His parents describe him as having the gift of being happy all the time. Sounds like a pretty wonderful quality of life to me.

  13. Nicole says:

    Sean,
    You’re so right that life will never be fair. We are faced with many tough choices, and those in the medical profession deal with life and death daily. Choosing who qualifies for organ donation and who gets priority medical care in a mass emergency are tragic realities in our sinful, broken world. The doctors and EMTs must seek to do the most possible good, but no matter what they do, some people will die. I am thankful I have never been in the position to make those decisions. Amelia’s situation is different because they cite her categorization as “mentally retarded” as the reason why she’s denied the transplant. They didn’t say it was because she would need another transplant down the road. I admit I don’t know what is the most fair way to manage the donor waiting list. Many, many people die while on the list and others die because they don’t qualify for the list. Would it be most fair to give people organs on a first-come, first-serve basis? Or would it be more fair to put everyone on the list and draw names at random so all those waiting have an equal shot? I know they have pretty stringent standards. Some people are so sick they would be unlikely to survive the transplant process. Alcoholics are denied liver transplants because they might destroy their new livers. I don’t know what’s right in those situations. They are terrible situations. Again, Amelia’s case shouldn’t apply. Even if she were denied a spot on the wait list because her body would require another transplant in the future, she should have been able to receive an organ donation from within her family. She requires an organ that can be given by a living donor rather than needing someone to die to provide a heart, etc.

    I’ll admit that I am somewhat on the fence when it comes to my personal views on contraceptives. My views vary depending on the specific method of birth control. But my point for the purpose of the scenario was that if the couple in question were religiously against contraception, no one should tell them they were wrong to practice their beliefs. Faith is certainly harder to understand than science because it requires belief in things that go beyond human reason and therefore, some of it can never be fully explained. But I see that you do acknowledge God’s role. Wonderfully, faith is accessible to we who don’t fully grasp all the principles. Otherwise, no one would have it.

    I didn’t mean to say that it wasn’t possible to have an open discussion on abortion. I’d love to discuss it with you, if you’d like. I’ve already basically revealed my views on it, but I believe it’s of the utmost importance so I’m always ready to talk about it more.

    Thanks so much for your comments. I appreciate your insights.

  14. Tiff says:

    Nicole…great post. Lots of stuff to chew on. I don’t appreciate the use of the cultural wording, but I get your point and realize that unfortunately, many people still hold derogatory terminology in their vocabulary and we are responsible for helping to educate others. Continue on with your fervent passion. Very much appreciated!!! What a great opportunity to learn of these injustices. With working in healthcare, I empathize with each patient in their health-related struggle. But what a wonderful opportunity to see God’s face in each person he has created equally. Many blessings.

  15. Nicole says:

    Tiff,
    I am taking the criticisms about my word usage to heart. I keep re-reading the post and asking myself how I could do it differently. Every time I use the word retarded, I am voicing what other people think and say, and I’m doing so to strongly disagree with them. The only possible exception is the sentence, “Alongside the Jews, Hitler killed the elderly, the feeble, the handicapped and the retarded.” In that instance I am not voicing someone else’s opinion, I’m stating a fact. So perhaps my word choice there was poor, although I was identifying people the way history books and the Holocaust Museum identify groups Hitler went after. And I still feel in that case I’m showing it as Hitler’s way of identifying people, not the way we should do it.

    But I could be wrong. Do you have specific suggestions of how you would have worded it differently?

  16. concerned woman of faith says:

    Nicole,
    The harsh wording of the title does get the reader’s attention. If the reader remains open-minded long enough to hear your viewpoint, he/she sees your intent to expose what’s wrong with this word and all labels or attempts to quantify a person based on someone else’s judgments.
    Kevin,
    I’m sure it stings for people with personal painful experiences to hear it used, and I’m not sure how to handle that problem more compassionately for them. It hurt me to watch the video footage at the Civil Rights Museum in Memphis of racist actions against blacks, but it was done to expose how wrong it was.
    I understand Sean’s point about doctors having to choose to WHICH of the potential recipients an donor organ would be given, but he did say they shouldn’t deny her the surgery if the family provided their own donor, with which I agree.
    It’s a slippery slope when we make any decisions about life that supercede the Creator’s. Birth control is a good example of that struggle…how much do we trust God’s decisions?…how much weight do we give to our role in what happens, versus God exercising His will in the outcome? I guess abstinence and the rhythm method would be the balance of those two. I must confess a lack of trust I a have in that area, which I acknowledge as sin.
    There’s also those who wouldn’t provide any medical intervention in any case due to their religious beliefs…and they have been charged with parental neglect in some cases…which is the opposite extreme of your issue. I’d like to hear your thoughts.
    I also appreciate your openness to discuss other people’s views rationally, even when they differ from your own.
    Thank you for your excellent writing, and keep it going!!!

  17. Tiffany says:

    Nicole,

    I am very sorry that you misread my reply. Dan even read it and thought that I sounded harsh too 😦 Not what I was going for and I look forward to discussing in person as I am not so eloquent with the written word~~I have learned this through replying to blogs! ha…No seriously, let’s talk about this on Monday night, I didn’t mean for it to sound the way it was interpreted. I guess that is the last time I reply to a blog laying in bed on my iPhone (I was trying something new here:) Many Blessings and again, I thought that this was a great post, so no worries…In Christ, tiff

  18. FoolsGold says:

    I think there is a difference between having a “lifeboat ethics” viewpoint and having a moral preference for what things should be like if resources were not scarce. Many people see greater value in a dog pound stray than in a pure bred puppy. I do think that quality of life is a valid factor to consider in allocating expensive medical care.

  19. Nicole says:

    Concerned woman:
    You said “There’s also those who wouldn’t provide any medical intervention in any case due to their religious beliefs…and they have been charged with parental neglect in some cases…which is the opposite extreme of your issue. I’d like to hear your thoughts.”

    This is an example of how complex philosophy becomes when we consider all the real-life applications. While I believe in absolute truth, I also believe that there are some cases when our limited minds can’t identify with total certainty what the right decision is. Most would agree it’s good to continue advancing technology and medicine to provide the best opportunities possible. But should the existence of a certain technology or medical procedure compel us to use it? Is it wrong for a cancer patient to refuse chemo because they don’t want to subject their body to such torture? Questions like that become all the more troubling when the decision is made by someone else. Should family members have the right to refuse or remove life support? Should parents be compelled to provide their children with certain medical treatments? Do religious beliefs trump other ethical considerations? We wish that no one would have to make such painful, difficult decisions. But they are a reality of life.

    I believe in freedom of religion. No doctor, lawyer, judge, legislator, etc, should be allowed to force someone to go against their religious principles. This should apply even if the principles of the religion go against the cultural norm of what is considered morally right. Because some religions (including Christianity) urge their members to remain separate from the prevailing norms of society, there would really be no religious freedom if religious followers were forced to comply with cultural standards. But is there a line religion may not cross? Is there a morality so universally accepted that even religion cannot trump it?

    The vast majority of Americans would agree that a parent’s duty is to protect and provide for their children in the best possible way. Does a religious belief barring medical treatment violate that parental duty? What if the government mandated contraceptives be given to children as part of basic healthcare, regardless of parents’ religious objections? Many people think it’s irresponsible to have “too many” children if your income prevents you from giving your children a certain standard of living. Should we let society intervene in those cases? I imagine you would answer no. But we still can’t reach a black and white verdict. There have been cults whose members are told to participate in sexual abuse of children, murder and suicide. Does religious freedom protect them in those activities? Most of us would say no.

    So I didn’t answer your question. It’s a very, very tricky issue.

  20. Nicole says:

    FoolsGold,
    Who do you trust to determine your quality of life for you? What factors are fair game to be considered? Health? IQ? Income? Job satisfaction? Number of friends? Stress level? If quality of life is measured by how happy/content a person is, I think we would find compelling evidence that many we call mentally handicapped are enjoying life a great deal more than those we consider to be very successful members of society.

  21. Nicole says:

    Also, cost was not listed by doctors as a factor in their decision. There’s no indication that Amelia’s family was unable to pay for the necessary medical care. If you’re worried about the expense and the people seeking the treatment are able to cover the expense, doesn’t your concern evaporate?

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