Why The Disabled Are Worried About It

In last Friday’s post I mentioned that, much to my surprise, the disabled seem to have good reason for worrying about assisted dying/assisted suicide (I’m going to shorten it to AD/AS here…) legislation being passed.  In this post I’d like to take a look at why.

It started with the whole Death Panels phenomenon.  After I wrote  Christmas Trees and Death Panels: How Fear Sets A Snare a few weeks ago, a thought kept nagging at me.  When Sarah Palin first threw out that now infamous term, she claimed that the government was planning to set up medical boards to decide whether her child with Down Syndrome would be allowed to live or not.  I initially thought it was a (pretty brilliant) piece of political misdirection and dismissed it.  (Admittedly, my opinion of politicians is at an all time low.  The bias runs deep.  If their lips are moving, I doubt it.)  Nonetheless, the claim reminded me of different accounts I’ve read over the years of the historical treatment of the physically disabled and mentally ill, and as I recalled some of those horror stories I began to wonder if there might not still be some deep psychic scars hanging around in our group subconscious.  It wouldn’t be unusual.  Deep fears based in old realities do tend to die slowly.  Could some element of genuine fear also be coloring Ms. Palin’s political ploys?  And was it an echo of that same fear that inspired such an overwhelming response in the American public?

(Who would have thought that my old fascination with mental asylums, body snatching, and medical experimentation on the terminally ill might eventually offer constructive insight into the deep, subconscious fears about disability and dying that are still active today?  Go figure.  Let that be a lesson to follow one’s passion, however odd it seems. )

In terms of their treatment at the hands of a larger society, historically the disabled have often drawn the short, shorter, and shortest straws.  Some of the accounts are heinous.  For example, in the Victorian era, in the early days of asylums and workhouses the disabled (both physically and mentally) were often segregated and abandoned in abysmal conditions; shackled in dungeons with no light, clothing, beds, or heat,  and left to languish in their own filth. In addition, because there was no meaningful legal protection, they were sometimes targeted for questionable medical experimentation by unscrupulous doctors.  Not to mention that, when it came to committing someone for mental illness, the definition of insanity was…well…insane.  Families could commit just about anyone to an asylum for reasons as simple as disobedience (in women) and unruliness (in children.)

It was a traumatic age to rank among society’s most vulnerable and, while conditions have improved dramatically in the western world over the last century (not always so rosy yet in pockets of the developing world though,) the old horror stories have nonetheless carried forward to today.  There are still families handing down tales of not-so-distant ancestors who were locked up in these places, and who doesn’t get a delicious chill running down their spine at the use of old asylums as settings in classic, horror movies?

Kings Park Psychiatric Center, New York (Building 93)

These stories from bygone days are still lurking deep in our group unconscious and contributing to the fear and stereotypes about disability and its treatment that exist today.   But up until recently I assumed those fears were dated and irrelevant.  Imagine my surprise then, to discover there are still compelling reasons for the disabled to not only fear segregation and discrimination, but possibly euthanasia as well.

After assuming that Ms. Palin’s stated fear for her son was not entirely political, I dug a little deeper.  I did a quick search using terms like disabled, fear, and assisted suicide and found this publication put out by RADAR: The Disability Network in the U.K.  It  addresses concerns about proposed legislation for assisted dying in the terminally ill and…please, let me first just say that in a media world as full of hype, spin, and misrepresentation of the facts as ours is currently, this little bulletin is a treasure.  It’s heartfelt and passionate, but still somehow manages to be respectful, and I read it a few times just to bask in that little miracle of miracles.

But aside from that, one piece of information I learned there shocked me.  It turns out the disabled have a right to worry about legislation sanctioning AD/AS.

Included in RADAR’s publication is a case study concerning a woman named Jane Campbell, diagnosed at birth with spinal muscular atrophy and not expected to survive her first year.  Best I can figure, at the time of this publication she was about forty and, in spite of extensive disability, living a dynamic, happy, satisfying life as a national advocate for the disabled.  However, during a hospitalization for severe pneumonia in 2003 she encountered an unconscious stereotype held by members of the medical staff that could potentially have proven fatal to her.  Her experience is important because it crystallizes some of the very real danger that AD/AS poses for the disabled, and I think it’s something that all of us healthy, strapping people need to consider carefully.

Evidently, while in the hospital she was approached by two different members of the medical staff overseeing her care who told her that, in the case of respiratory failure, they assumed she wouldn’t want to be resuscitated with a ventilator.  She was at first surprised, and then alarmed, because they didn’t seem to believe her when she insisted that, no, she wanted to continue to live very much, even on a ventilator.  Her husband eventually had to race home and collect photos and other factual evidence to convince them that in spite of her disability, she did indeed enjoy a very high quality of life.  Unlike an equally young but non-disabled patient, Jane found herself in the position of needing to prove that she still had every reason to want to live.

I imagine it was terrifying for her.  Medical personnel often have to make tough calls that influence whether a patient will survive a crisis, and if they believe that the patient doesn’t want to survive it will almost certainly influence their decisions.  Jane was confronted with medical professionals who, because of unexamined stereotypes about her quality of life, automatically assumed that she’d prefer to die.  More frightening for her was the fact that these stereotypes acted upon them so powerfully they continued to doubt her, even after she initially told them it wasn’t true.

Now some might suspect Jane was projecting her own fears onto the staff.  I might have too, except that I instantly recognized the kind of situation described because I was in it once myself, only I was on the medical side.  When Maggie, a woman who’d been left as a quadriplegic by polio sixty years earlier, was first referred to our hospice with terminal cancer, I was laboring under the same flawed assumption that she must be relieved.  When I first entered her home I thought surely she must be looking forward to her long suffering coming to an end.

Nothing could have been farther from the truth.

I found a woman devastated by the news.  She loved her life and for good reason.  Surrounded by a devoted, supportive husband, children she loved, grandchildren she adored, and a wide network of extended family and friends, she had at various times produced an educational TV show and managed a branch of the state tax commission for more than a decade.  She was sharp, beautiful, disciplined, optimistic, graceful, and dynamic…and she was not, I repeat not, ready to die.

It was a real eye opener for me.  The reason stereotypes are so damn successful is because, without any real life experience to refute them, they feel true.  It isn’t until one finally runs aground on the rocks of some contrary evidence that they crack open, revealing the blind assumptions they’re based on and allowing us to finally begin to question them.  Maggie was the rock that split my hull.  She was severely disabled but, where her desire to live was concerned, that was totally irrelevant.  While her husband told me after she died that of course she was relieved to escape the limitations placed on her body, that in no way translated into meaning that she wanted to die. Evidently, wanting to be free of a disability and wanting to be free of  life are not the same thing.

Go figure.

Now, an important question to ask is, does any of this really matter to those of us who are not disabled?  Clearly, this stereotype is potentially dangerous for someone who is but for someone who’s not, other than arousing our deep humanitarian instincts, is it pertinent?  Will it ever affect us?  Do we have any skin in this game?

You bet.

Here’s an important point to keep in mind; eventually anyone who doesn’t die instantly is going to experience what it’s like to be disabled. Because the dying are a subset of the disabled. When we begin our final journey we all enter the world of steadily decreasing ability and, to varying degrees and for however long it lasts, we each get to feel what it’s like to become helpless, dependent, weakened, and vulnerable.  And when that happens all those non-pertinent stereotypes about disability flapping around are going to catch our scent and come circling, and you better believe they’ll influence the people making critical decisions for our lives.  It won’t matter which side of the AD/AS argument any one of us falls on, whether we’ll be among those who want to live but, like Jane and Maggie, are cared for by people who don’t believe us, or whether we’ll be among those who want to die but who are cared for by people who think we’re no longer competent to decide.  Either way, left unaddressed any stereotypes about disability will almost certainly wield power over our self sovereignty.

Now you might think that this alone is a good enough reason to look more closely at the actual wording of any given legislation for AD/AS, and to have some in-depth, follow-up discussion.  But Wait! (I say like an infomercial for a new, blender/chopper/shredder/slicer kitchen appliance that one just can’t live without…) There’s more!

But…it’ll have to wait until another post.  I’ve already gone way too long already.  Next Friday, I’d like to take a look at the possibility that the blind assumption the disabled don’t have any real quality of life may also be a prime factor influencing why some people choose assisted dying/assisted suicide in the first place.

copyright 2010 Dia Osborn

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One response

  1. I am going to think of a long comment to this post when I have the time…

    my whole career has been in psychiatric nursing and for the mainstay of my senior nurse career spinal injury nursing……

    I have dealt MANY MANY times with quadraplegics that are depressed and suicidal…. and I have strong thoughts on this subject !! so I will formulate my thoughts and will comment!!!

    can you do me a big favour?
    my sister has started her own blog (supporting my brother who has a form of motor neurone disease)
    she is feeling a little fragile about her abilities to complete a blog and needs a few nice (encouraging) comments…
    could you oblige?
    the link is below!!!
    many many thanks in anticipation
    xxx
    john
    x
    http://supportingandrew.blogspot.com/

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