Hearing dissenting voices.

Now I get it.

Last night on Facebook the conversation continued.  As many know,  I have been arguing for compassion for an overwhelmed caregiver/mother who attempted to kill her son with autism.  My point in all of this is that in cases of severe disability and total dependency we will only solve the problem of caregiver violence if we solve the problem of caregiver burden.  Or, as a good friend put it, in cases of extreme caregiving when an overextended parent finally falls apart it would be good for society to stop blaming the parent and starting helping out.  This friend was alway better with words!

I was told that by arguing for compassion for the mother I was saying that there was nothing worse than having autism.

I don’t believe I said that, but I am sorry if that was somehow heard because nothing could be further from the truth.  In fact, I value a world that celebrates diverse abilities and communication styles.  I value world where we are reminded that there can be different ways of experiencing and perceiving that world and I believe that people with autism have much to teach us in that regard if we take the time to listen. I would strongly advocate for the creation of that world and the amplification of autistic voices.

I was reminded that in the autism community some parents are trying to do things to “cure” autism and I think it was this comment that really helped me understand some of the reasons for the vigorous dissent.

I don’t think this hope for a “cure” is isolated to the autism community.  When my son was very small parents were re-mortgaging their homes and lining up to put their kids in hyperbaric oxygen chambers to cure cerebral palsy.  We never chose this option, but knew several who did despite the fact that there was a compelling research study out of McGill University debunking the “therapy”.  In fact, some kids were found to be at risk in hyperbaric oxygen chambers.  Some of the parents I knew were struggling with letting go of the image of the “perfect” child and this therapy offered, to them,  a ray of hope. They would do anything, at any cost.  Me,  I preferred to accept my child for who he was, including cerebral palsy, and to put my time and energy into creating the best life possible for him.

If I am hearing the offered feedback correctly, this is part of the fear among the autism community with the murders of children with disabilities.  Similar to the concerns we are hearing in the assisted death debate, people are concerned that these murders are evidence of a world that believes that death is preferable to disability, and in the autism community, death is specifically preferred to autism.  I would guess that some of the murders of children with disabilities are a result of that thinking, and make no mistake, that breaks my heart.

However as a blogger about extreme caregiving the situations I tend to comment on are situations where the caregiving demands seem to have outpaced what the caregiver could provide and there was little to no help offered to the caregiver.  The overwhelming situation persisted for years and the caregiver lost hope and seemed to think there was no way out other than death.

So when I argue for compassion I am not suggesting that death is preferable to autism, or disability. Not for a nanosecond.  I hear these stories about caregiver violence differently, and to be fair, I hear them from my vantage point as an extreme caregiver.  I hear these stories as saying that to the hopeless caregiver death is preferable to an unsustainable caregiver burden where they know it is just a matter of time until they can no longer care for their loved one.   I hear these stories as saying that the mother knew her child’s health and quality of life was wrapped up in her ability to care and when she could no longer provide that care the situation would become hopeless.  For both of them.  We need to remember that the case I am commenting on was a murder-suicide attempt.  For me, these situations are a symptom of utter desperation to which society failed to respond and then harshly judged. In these cases my heart breaks for both individuals.

I would hasten to add that the Latimer case is different and shouldn’t be thrown in to this discussion since that case involved euthanasia and perceived chronic pain and suffering. Including Latimer in this discussion needlessly complicates the discussion.

So, in the end,  I would agree with the comments offered that we need to value the voices and experiences of people with disabilities who are in the position to share those experiences.   I would hope that as these voices are amplified parents who have only just learned their child will live with a disability, autism included,  will come to understand that disability is not the curse they might imagine for their child.

My only addition to the conversation would be that if we are serious about ending caregiver violence, we also need to listen to the voices of overwhelmed caregivers.  We need to ensure they have the supports they require to continue to offer excellent quality of life to their children with very severe disabilities.  The two issues go hand in hand.  And, we need to ensure that caregivers’ lives don’t become the curse they have imagined, or the hell they have come to know.



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