Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Thursday, May 16, 2013

A Piece about Peace's Piece or "I wish that my child did not exist?"

There are all kinds of stupid people that annoy me but what annoys me most is a lazy argument.
Christopher Hitchens

I must confess that I have been an avid follower of Bill Peace's blog, Reading it often, commenting infrequently....

Recently, Dr. Peace posted about those vile people who take issue with his positions about disability issues and disability representation. Shame on you all! Shame on you if you support the various "Death with Dignity " initiates because laws allowing the terminally ill to receive assistance in choosing a "good death" will suddenly enhance the demise of the disabled...that's because of the "slippery slope argument". Of course, by definition the "slippery slope" is an epistemological fallacy. "A" does not always mean "B". Also a note that extraordinary claims require extraordinary evidence.

Cures? Well, that's another vile taboo subject akin to incest. Isn't it much better to accept your child who cannot walk and look askance at recent developments in light weight exoskeletons?  Is it not better for a child with refractory epilepsy to just be accepted as they are?  Isn't it better to solely accept a child with severe spasticity and contracture than to hope that some day stem cell research will result in cure? Actually, if you didn't realize it,  the cure industry is the Satanic arm of Big Pharma. Just provide sufficient services to the disabled and adequate supports and all will be will in Camelot.  From my sarcasm you can readily ascertain that these are NOT my positions as a father of a severely disabled son.

So let's use a real life example. My son is spastic, very heavily contracted, with rotational scoliosis, and has multiple physical and cognitively expressive issues. Does that say anything to you? Well, try this experiment if you will indulge my ramblings. Tense your body, tense and intentionally contract every muscle you can....see  how long you can maintain this intentional position. One minute, two? Pretty painful; in fact, it's godawful painful; in fact, the pain is unremitting and intractable. Now smile while you're doing this. do this for 24 hours a day, 365 days a year, 15 years. Now, watch this suffering of pure humanity in your son for 15 years...would you hope for a healing cure, for an abatement of suffering?  Would you sacrifice your own life so that your son or daughter would not suffer?  Most parents would, but would the advocate of acceptance?

So, in the context of the argument written in this post by a man dismayed by his critics, he responds to a kindly mother and I when we rather gently question his disdain for the cure industry. Please read with the realization that it may be very difficult.

  william Peace said....
       Elizabeth, I have been thinking about your reply as well as Phil's. When you state you wish a cure existed for your children this is what I hear--and this may or may not be intentional, only you can judge this. I hear I wish my child did not exist. I wish my child was typical. By logical extension I wish people like my child did not exist. Talk of cure makes me decidedly ill at ease. (emphasis is mine) Is a quest for cure not an effort to eliminate those society does not value? I lived the first 18 years of my life as a typical bipedal person. I have lived almost twice as long as a paralyzed man. I consider my existence before and after paralysis to be equally valuable. Yet my existence is often called in question simply because I am not bipedal. Hence I would suggest we accept people for who they are and value that individual as they are.
May 8, 2013 at 12:33 PM

     As I mentioned in the opening of this discussion, this is quite a lazy argument - no proof, no objective validation, just a statement from what I perceive as a skewed academic mind.  Of course, I responded ... privately and by e-mail.  My words were unworthy of publication, private and spurred by indescribable rage (that means nasty, vile words).  I want a cure, I want a relief of suffering, I want life for Adam to be more filled with ease.  The parent of EVERY medically complex, physically and cognitively child wants  something to make life easier for the child, not the parent. Although a bit of reprieve for the caregiver might allow for a few more years of life.

      As parents and caregivers of very disabled children or disabled adults, we have accepted who they are and we fully value their humanity.  We spend every waking and sleeping hour doing what is the very point of a profound weariness of the soul and the body.  I believe my words are the words and the thoughts of most every parent of a severely disabled child I have met.  I have no idea where in the recesses of any mind a human could say to another human, " your desire for cure, your desire to alleviate suffering is a function of an unconscious wish that "your child did not exist."  Vile....
        After a rancorous exchange, w. peace did apologize:

william Peace said...

Single Dad, I am well aware I hurt two people very badly. I deeply regret this. I do not want to engage further because I fear my words will only cause more pain and hurt. I was wrong. I am sorry. This is inadequate I know. Again, I am sorry.

May 9, 2013 at 3:08 PM

Well. many, many more than two people were emotionally battered by a generally respectful and insightful blogger on the area of disability and discrimination. Every single parent of a severely disabled child or adult was pained and hurt...every one that I have every met. We are all aware that cure may not be attainable in our lifetime, our kids' lifetimes or ever. That never precludes the search, the worldwide search for that which will make our sons and daughter suffer matter what the means are.

I am bewildered that such a statement could be made questioning whether any parent could wish whether their child existed?  "I was wrong." does not explain the underpinnings of such a statement, no matter how admittedly wrong it was.  Why was the statement made?  What belief system underlies such rage?  "I was wrong" is insufficient. Not engaging in further explanation of what you said reflects more an attempt to stop a conversation than to avoid further hurt.  I want to understand where such an observation comes from when  it can be directed at the most vulnerable segment of the disability community.  Commentary should be withheld  and one's observations should be limited to one's experience and knowledge...people with limiting physical disabilities.  Please leave the caregivers of the severely disabled alone; it is a world you cannot understand.  Our issues far outweigh handicap access, "inspirational porn", neurodiversity, critical analysis of theatrical productions, etc. Our issues usually center around two simple, inescapable facts of life:  living and dying on a daily basis.  

Each severely disabled person and each caregiver of a severely disabled person experiences their life and their soul in a different manner...there is no standard approach, no model better than another, all barriers are very different.  Each one's emotions, motivations, energies, levels of resilience, levels of depression and levels of weariness are unique and sacred...and all are to be equally respected.  Every experience of this world is valid and it is inappropriate to evaluate or comment on other's experiences and expression of their disability.

You can never claim to be a disability advocate by vilifying or targeting portions of the disabled community.  It is already fractured within..  The assumption of a larger than life position in the advocacy world necessitates a larger than life responsibility to represent and understand all  or either to be clear whom you represent!


  1. Mr. Peace’s words were indeed more than poorly chosen because he said exactly what he meant to say. I believe it to have been born of him transposing, with gross inappropriateness, the paradigm of social inequality onto the personal (and rather unassailable) perspective of a parent of a severely disabled child.

    His statement was so out of line that it strikes me as akin to a parent of a black child in the ‘60s saying they want a solution to segregation and the reaction being, ‘well it sounds to me that you wish your child wasn’t black and thus logically you wish your child and other black children didn’t exist.

    It was, at its best, a non-sequitur but do not think I am defending his mistake in any way, merely trying to open the possibility of an explanation which at the very least, could give us a better understanding.

    I fully realize that sometimes lines must be drawn, as we look out for our own best interests and I agree that a full exposition, as an apology, is warranted by Bill Peace.

  2. You are right, Eric. Sometimes fully understanding the rationale behind a person's particular choice of words, how they are directed, and how they are really intended, allows one to move past the questioning and perhaps past personal rage.

  3. THANK YOU!!
    First, for coming back! I was very excited when I got the email of your first post back because I always looked forward to reading your thoughts. You have a manner of putting things much more eloquently than I could ever dream. Case in point: this post!
    Second, for putting into words the very thoughts I have whenever I hear parents say ridiculous things like, "If it weren't for Autism (or whatever disability), my child would not be who she is so, no, I don't wish for a cure". No matter WHAT a person has (maybe nothing) or WHERE they're from, or WHO their family is, all those things put together, make up who they are.
    Parents of kids who struggle in a subject in school commonly seek tutoring or extra-help after school, right? Do THEY say, "The fact that Johnny is terrible at adding makes him who he is so, no, I'm not looking for help for him"??? NOOOOO!!!! Does the fact that they hire a tutor or take them to Huntington Learning Center or wherever imply that they wish they didn't have their kid??? NOOOOO!!!! They are simply trying to best set their kid up to reach their maximum potential.
    So why is it, that when I wish to GOD that my daughter was able to talk or walk due to some kind of medical advancement or a miracle that tutors can't help her with, that means something different? Just because she has disability issues? For sure, if she was verbal and didn't have a learning disability and was in the regular school system, she would be a different child. But if she was born to the prince of England, she would be a different child; if she were born to a family in Africa she would be a different child; if she were born in Texas she would be a different child; if she were born a BOY she would be a different child!
    Me wanting her to be able to talk, walk, dress herself, have friends, get married, etc. is me being a mom who wants my daughter to have the easiest life possible - one with as little drama and difficulty as possible. Isn't that what EVERY good parent wants??

    1. Hi Melissa,
      Thanks so much. It is good to be back, somewhat slowly, but back.
      I agree with your words, which by the way, as as powerful as mine try to be.
      I believe that we accept our kids as they are and shower them with love and care and attention. We wish for a cure, some place deep in ourselves and that cure is not so that we have an easier life, but so that that our kids can have an easier life. We all want for them to be better and work damn hard at it. It's not that we achieve that goal, it's not that we become simply accepting. It's because we want their lives to be a bit less free from pain, from suffering, from indifference. Cure is a range of improvements but we look for an less oppressed life for those we love. Simple... whatever lessens suffering and no matter what model you ascribe to...severe disability involves suffering and I refuse to believe in "redemptive suffering." Happy to be back...


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