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, http://badcripple.blogspot.com/. 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. Interesting...now 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 right...to 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 less...no 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!