Contributors to society

If you don’t do so already, I highly suggest that you read the daily postings by Orac over at Respectful Insolence and by his “friend” over at Science Based Medicine. You’ll learn a lot about critical thinking and how it can be applied to the anti-science movement. Today’s post at RI was a rough one to read. It had to do with the death of a child with autism at the hands of his mother and of his caretaker. The long and short of it is that the mother and the caretaker of the child could not deal with his autism (and the behavior resulting from the autism) and so decided to kill him. His murder was appalling in itself, but the way they went about it was brutal.

Within the comments section of that blog post was this comment (with my emphases in bold):

“i agree with t’s comment.

i understand the opinion isn’t popular with people who have severely autistic/disabled children – but the only responses those people have provided to t’s logical post, are purely emotion-based.

lilady – i’m very sorry for your loss, but even you can’t provide any way that society benefited from pouring resources into keeping your severely disabled child alive for 28 years – only that you loved him and were happy to have him in *your* life for that time.

the money put into those services doesn’t magically appear – it comes from tax-paying citizens and their businesses, and it is a finite resource. the money spent on severely disabled people – who, without sugar-coating, are of absolutely no benefit to society as a whole – would be better spent improving education, healthcare, infrastructure, etc… for those who are able to put back into the system.”

Yes, that’s our “lilady” that he is addressing. And, if I may be “emotional” for a second, I would slap him across the face for talking to her that way. But I digress…

Whether “t” and this commenter (“Have to Agree”) were trolling is up for you to decide. But, trolling or not, there are plenty of people who have the same point of view. They look at the time and resources put into a person with a disability and they see waste. Likewise, they see waste in trying to save someone who has gone into the middle of a lake and is now drowning. “Why risk the lives of the rescuers in saving someone so stupid?” they ask. Seriously, that argument about the lake was made after the tragic death of a teenager who drowned trying to cross a lake. It was made by a man associated with the Tea Party, and it was made at one of their rallies. (I was there not as a participant. I was there just like National Geographic explorers are “there” during a lion’s feeding frenzy.)

Emotional issues aside, what does the evidence and the facts tell us about respecting human life and, subsequently, preserving human life, even if that life is “not productive”? At the very least, taking care of someone with a severe disability is employing someone else. Some nurse or other caretaker is getting  paid, and that money is going into the economy. Then there are the medical advances that will come from the experience that the physicians taking care of people with disabilities will gain. A child born with severe autism will offer a wealth of knowledge to the understanding of developmental delays if that child is taken care of and the person doing the caring passes on the knowledge. Likewise, a paraplegic will allow for advances in assistive technologies for others. People developing those technologies will make money, and those technologies can be applied in other fields.

Am I being too emotional?

Now, let’s suppose, for the sake of argument, that I there is a child who is in a persistent vegetative state and only his or her family are taking care of them. They take days off work or school to care for this child. They’re not employing anyone, and they’re not in need of medical care for the child. There is just money going out of the family’s treasury and into food and clothing. Is that a waste? Is that something that is not benefiting society? Without getting too emotional, I don’t think that it is.

If that child inspires the parents to better themselves so they can provide for the child, that’s something. If the mother or father or siblings become active in the community to improve the lives of those who are born or become disabled, that is something. And if they become kind to each other and to others based on their experience with that child, that is something.

I have nothing but respect and admiration for people who take it upon themselves to look after those who can’t take care of themselves. That selfless act makes those people better parts of our society. Don’t believe me? Go ask one of them if they’re more evil because of their “luck” in life. Chances are that they will tell you that their lives are better because of that disabled (or non-typical) child or family member.

This is not to say that there are not plenty of people and families who are in a state of despair over their situation. But 99.9999999% of them don’t blame the disabled child, at least not enough to murder them. And that is where we find ourselves today. We find ourselves debating the merits of the despair felt by the mother and the caretaker of the child they killed. And we find ourselves debating, quite unnecessarily, if people who are completely disabled are worth taking care of. All the while, the debate we need to be having is how to better take care of the needs of those disabled people, because that kind of brainstorming and action makes us all better.

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10 thoughts on “Contributors to society

  1. It is really hard to know what is right here. As we saw i the case of Terri Schiavo, some people believe that where there’s life there’s hope, others believe that ultimately there is a point where prolonging life is pointless.

    Some cases, such as Tony Nicklinson, are easy to call. If someone is capable of stating clearly and consistently that their quality of life is below the level they find acceptable, if they no longer wish to live, then it is cruel to insist that they must.

    Other cases are much harder. A child born profoundly disabled and unable to communicate, for example. I genuinely do not know how much medical effort should be put into prolonging such a child’s life if they become ill. I have known a lot of profoundly disabled people and their families, I used to volunteer with PhAB. Many of these children were happy souls who brought happiness into the lives of everyone they met and amply repaid the effort of looking after them. Others were basically unresponsive, and without talking to the parents it is hard to know if they are ever anything else.

    The most heartbreaking cases are the degenerative diseases – duchenne, for example. You know that, for all the advances of recent years, a duchenne patient’s life will be shortened and will end in a way that robs them of dignity. A primary school friend had duchenne. It leaves a vivid impression.

    You certainly can’t dismiss all disabled people as a waste of resources. One of the greatest baritones ever to have lived is a thalidomide victim. His music gives great joy. But I don’t think you can say the family should always get to choose to indefinitely prolong life, either, not least because as in the Schiavo case the family is not always united.

    The best you can do is get politics and economics out of it and focus on the individual, what kind of quality of life they can expect, whether they are in pain and whether there is any realistic grounds for hope.

    • While, there are many diseases that can rob one of dignity, death brings absolutely no dignity.
      What should truly matter isn’t if one considers a disease victim’s life worthy of continuance, what should truly matter is what the victim considers worthwhile to continue.
      That another can make that choice in a vacuum is beyond abhorrent, on the par with Doctor Mengele, who made similar monstrous choices.
      It is one thing to consider withdrawing life support from someone on life support, it is another to choose to end a life without significant input from a physician.

      To even consider such a decision is to utterly abandon the founding principles of this nation, principles laid down in our Constitution and society as a foundational level.
      In an instance such as was written of here, it was a summary execution, an utter abandonment of those principles that our society and nation were founded upon.
      Utterly ignoring “…nor be deprived of life, liberty, or property, without due process of law…”
      That choice belongs not with a family member, determined in a vacuum. That method denies every important founding principle that our society was built upon. It must, by necessity, be an informed decision that is to be made with the guidance of medical professionals, mental health care professionals, trusted advisers, with said advisers being a least consideration and most importantly, the decision of the one who is ill. If unable to communicate, one must consider what they desired before becoming incapable of communication.
      It most certainly is not a decision where one essentially says, “Hey, my kid is f’d up, I’m going to kill him, rather than let the state take him and I’ll take myself out as well.”
      That is only one thing, premeditated murder. Something our society has utterly rejected, save for our most savage criminals and even then, only in some states.

      • I agree, fundamentally, but there is a question around what to do when the victim is no longer capable of expressing an opinion one way or the other. The act in question was inexcusable, I don’t think anyone here disputes that.

        References to the Nazis and the US constitution don’t do a lot for me (I live in the UK), for me it’s about how to decide when the fundamental thing that defines sentient humanity, is no longer present.

        I will be at the head of the mob with the pitchforks when they finally turn out to bring the antivaccinationists to justice for their murderous lies. The irony of demanding a mythical “100% safe” vaccine while actively promoting bullshit like chelation is staggering.

        • Staggering is an understatement. One proponent of woo suggested “EDTA = garlic + malic acid (apple derived) = natural chelator”.
          Beyond the impossibility of that EDTA being made from garlic and malic acid, the only thing that could be made with the two is part of a marinade.

          I am surprised that WWII left such a small impact on UK society. I’ve noticed it in the past as well with Brits I know. As my father’s brothers and my father himself served during WWII, I know that my own experience and world view is colored by that fact. I neglect to consider that others do not find that period of history of great significance at times.

          The question really comes down to a question of sentience and sapience. In the latter case, one can ask the patient. In the former, we have to consider what their previous wishes were and how they would wish their treatment to be in their current predicament.
          Then, to further confound the issue, what to decide when that person never could communicate in the first place. In that instance, one has quite an unenviable quandary.

    • My son was not in a persistent vegetative state as Terri Schiavo was, and he did interact with his environment and the people who loved and cared for him.

      A sometime poster at RI, who is himself recently diagnosed with an ASD with some physical impairments and not a “productive member of society” (never been employed and the recipient of publicly-funded disability and medical benefits), interpreted the premeditated murder of Alex by his mother and his caregiver as “assisted suicide”. I’ve had “dialogue” with this same individual before and he tends to disparage the spending of tax dollars for those who are more impaired than he is. IMO, he seems to think that there will be more government goodies for him, if we deny very impaired children and adults tax dollar funded entitlements.

      Further down on the blog, a regular poster, made a comment that he didn’t condone the murder, but was quite upset that Alex’s murderers killed the cat:

      “Is it wrong that I am more upset that they killed the cat than that they killed the child?

      That they killed the child is tragic, criminal, and wrong. But on a gut level, I’m more upset that they killed the cat.”

      Well, that comment didn’t go down too well with other “RI Regulars” and once they commented back at the cat lover questioning his value system, the poster managed to dig himself in deeper, playing the part of the indignant poster who prided himself as a pet lover who had taken “rescue cats and dogs” into his home.

      I finally responded to him:

      lilady
      June 15, 2013

      If you are lurking here (redacted), I have this to state to you. I sincerely hope that you will get some help for your issues.

      As I state above, I have followed the serialization of Alex and his mother from the first time Lisa Goes blogged about them weeks ago. It never passed my “smell test”. I suspect that Dorothy and the godmother/caregiver were experimenting on Alex with “biomedical treatments” (dietary, bleach enemas?), and they had an arsenal of sedative drugs…because Alex “developed sleep problems” ~ November 2012.

      Lisa Goes, Dorothy, the caregiver, Wakefield and the other “helpers” who visited the child during his hospitalizations lied about the care he received:

      – 4-point restraints 24/7? Never happened.

      – Naked in bed except for an adult diaper ? Never happened.

      – Untreated G.I. issues? Never happened…for the simple reason that his abdomen was examined upon admission and frequently by the physician assigned to his care. (palpation, percussion and ausculation). His stool was tested for presence of blood by the nurses assigned to his care and his stool was probably tested for the presence of bacteria, viruses, and ova & parasites. The “helpers” included the mommy/experts from AIM (Autism Is Medical), who along with Dorothy were quite insistent that Alex required food allergy blood testing and other invasive interventions. Why would any doctor risk a malpractice suit if there were any indications of a pathological process in his abdomen or bowel?

      http://meded.ucsd.edu/clinicalmed/abdomen.htm

      I posed a question up thread about Dorothy not taking her child to Arthur Krigsman, Wakefield’s good buddy who is a gastroenterologist, who has actually made diagnoses of autistic enterocolitis for children he has never seen and who has professional practices in New York and in Austin, Texas. Dorothy. Goes, Wakefield and the other “helpers”, claim Alex was mistreated and his medical needs were not addressed, yet they stayed in the hospital.

      Now, we come to Polly Tommey, Wakefield’s partner at the Autism Media Channel and her statements…

      http://katenews2day.com/2013/06/13/mother-and-godmother-stabbed-to-death-14-year-old-autistic-son-after-demanding-he-be-removed-from-hospital-and-be-taken-home/

      “…A video from the Autism Media Channel on YouTube shows Alex Spourdalakis in February during one of many hospitalizations. His mother can be seen tenderly washing Alex’s feet.

      “Dorothy, the mother, had absolutely nowhere to go, nowhere to live. With this boy, she would go from motel to motel,” said Polly Tommey, Autism Media Channel.

      Polly Tommey and her Autism Media Channel worked with Dorothy Spourdalakis – recording these public pleas for help…”

      – Alex and Dorothy were homeless? Bullsh!t. Neighbors report that Alex, Dorothy and the godmother/caregiver lived in that apartment over the plumbing store for quite a while. According to the police spokesman, Dorothy called them frequently to that apartment for assistance to take Alex to the hospital.

      (Redacted), you have been posting here for quite a while, yet you apparently never read my comments about my son’s struggle to survive and his sweet disposition, his mischievous smiles and the joy he brought to the lives of every person who knew him. He was not a stray cat that I rescued and he was not my chattel to keep or discard…he was my child.

      After his peaceful death in his sleep, he made a difference in the lives of the people whose sight was restored with his corneas and whose broken hearts were mended with his heart valves.

  2. Reuben: I think I handled those two posters rather well, considering what I thought of them and their devaluing of my son’s life. Having my child did change my life for the better, truly. I quickly learned how to advocate on behalf of him and those transferable skills started me on the thirty-seven year journey to advocate on behalf of other developmentally disabled children and adults…which gives me an immense sense of satisfaction.

    Yes, you do realize that parents of special needs children do undergo periods of great stress and despair, but those times are more than balanced when you see your child survive and thrive, yet another medical crisis. He is as close to me as my next thought and he lives on in the lives of the hundreds of people he touched during his lifetime…and in the lives of the people who received his corneas and heart valves, after he died peacefully in his sleep.

    Thank you for your kind words, Reuben.

    • Lilady, I considered a few things when actually viewing the page, after this article. I missed it due to caring to my father today.
      It *has* been a challenge. Dementia, well, vascular dementia, courtesy of his ignoring the living hell out of his CHF, diabetes and a host of secondary illnesses being ignored while I was deployed for five years.
      As a hint, last night, I got four hours of sleep. Something I’m now being re-aquainted with from my military days. Not really welcome, but lacking that, I’d be flat out of fathers.
      When I retired, I turned down a second 160k contract to return home when I learned of his revolving door policy at the local ED, which has historically and currently less than spectacular in performance. They’re an OK local ED, for the region, they’re one step above a hospital that struggles to keep its insurance coverage.
      Considering his condition at arrival, that is an excellent example. Upon readmission within two weeks for pneumonia, he was initiated and continued with the same two antibiotics as the first time and was unresponsive. No other attempts were made.
      He was transferred into the UofP system, with initial and further treatments that were effective, save at th CNS level, as literally the morning before admission, his nephrologist wished to have a vascular access point surgically provided.
      When he called me into his room and started tripoding, I was mildly alarmed. Three seconds with a stethoscope, I was massively alarmed and called short collection of vitals in favor of immediate transport to the hospital that is largely seven minutes away on rush hour.
      His legs were full and hence, his lungs started to fill.

      The treatment team leader didn’t want to initiate dialysis, I suggested that she ignored his current uremic poisoning and strongly suggested that she try.
      She called back later in a state of surprise and astonishment.
      Granted, under his conditions, it could go either way. Even today, it still can. He ignored diabetes, blood pressure and heaven knows what else after my mother died and I deployed.

      Today, I consider some words that suggest abandonment of our Constitutional guarantees and I honestly want to retch.
      TO be honest, my words fail me in that case and the worst of the worst of our vocabulary and more should apply.
      I’d follow it further for the idiots, but to be honest, I’ve been proved to send people to suicide. I have no desire for that now, I’m retired and not at war.
      Though, at times, I’m very sorely tempted. Thankfully, I have my wife to review that which angers me s much.
      When she fully agreed, I desisted and became clever.

      I’m far from perfect, that I admit. I’m even vindictive.
      I also respect a second chance on screwup. Had seventeen fold on that.

      STILL, that motherlover, saying that with his own words and teeth would find himself lacking at the minimum, teeth. If he made the mistake of producing a weapon, the argument would be moot.
      To many, I am the “Ongoing storm”, to others, a wading into the lake of peace.
      I personally *hate* physical or otherwise violence.
      I’m also well and truly trained in such an abhorrent practice.
      I don’t enjoy it, it is what it is. I’m only happy to now be retired.

      *MY* preferred weapon is my mind. Not brutal acts of violence, indeed, I can build upon such acts…
      There is no superior to the mind as a weapon. Sights cant fix on it, bombs can only randomly find it.
      But, ideas are the most rare things to die.

  3. I’m not as good a person as you.
    Were someone to utter those words in my presence, they’d not get a slap, they’d get strikes designed to remove the teeth from their hateful heads.
    Thankfully, it’s an extraordinarily rare even when I lose my cool, but that would most certainly make me do so. Then, the offending speaker would learn a few facts of life in this land.
    First, that the making of hateful speech that is may result in the breach of the peace is not protected Constitutionally or by some of his peers.
    Second, there are those who can behave as irrationally, even more irrationally than they and will brook no such hateful speech against those who most deserve our protection.
    Finally, polite company can be impolite when spurred by such hateful, small minded disrespect of their fellow citizens and those who need our protection.

    Finally, I would then remind the now toothless misspeaker that our founding fathers exercised a far more harsh method of dealing with his ilk. First, there was riding him out of town on a rail. Second, there was tar and feathers, which frequently resulted in death from infected third degree burns.

      • I doubt you could manage to piss me off. That typically takes the intentional cause of harm to others, especially women and children.
        The majority of the time, I will simply give someone a piece of my mind. One sufficient to undermine their self-confidence. Rarely loud, more distinct, clear, concise and utilizing my extensive vocabulary to ensure that they are fully cognizant of my poor opinion of their thought processes.

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