Too much bitterness in the eugenics Kool-Aid

October 1, 2010 at 8:00 AM (Uncategorized) (, , , , , )

From Clair Lewis‘ blog via NDY…she’s been tapped to speak with a BBC Sunday morning show…

I am being asked to put forward (sadly only in a sound bite or two, I expect) a human rights focussed secular standpoint on (what I am told will be) a capitalist eugenicist style rant from Virgina Ironside – about women’s moral obligation to terminate babies who will be ‘severely disabled’ and demonising those people who choose not to participate in the UK’s free whole population eugenic screening and termination program.

And,

[A] (free) eugenic screening program [available to the] whole population in the UK is possibly contributing to people thinking it is ok to kill disabled people later in life (ie linking it to a NDY standpoint) because our lives are worse than death itself.

Love the snark.  Snort.  I’ve been closer to death than I cared to be, even difficult lengthy arcs toward death.  I’m still living, but it was close… As a PWD I can say straight up, this is damn hard, but in no way is it “worse than death.”

Hey, maybe that’s one of the reasons I went through all that stuff.  So I would feel I had a legitimate ability to weigh in on that question.

A line from Virginia Ironside’s website reads:

I don’t fear death, but fear getting old, mad, incapable and gaga.

Fearing these things is ok…but using ignorance about disability and fear of aging to moralize at other people is not.

Breaking it down a bit.

The first thing she fears is getting old.  My mother in law had a magnet (one of many) on her fridge that read “Growing old is not for sissies.”  So, yep growing old can range from gradually more inconvenient to downright awful…It happens to everyone that lives long…I get her fear, I’ve got it, but she will have a lot of company going through the same thing…so it isn’t as if her difficulties will begin with isolation…might end there, but won’t begin there. Everyone on the planet would prefer an old age that didn’t degenerate into awful.  and the awful label should only apply if the elder thinks and feels that it’s awful.  Doesn’t mean leaving early is the best option.

Two more words that go together “Mad” in the sense of being unhinged, and “gaga.”

I’m not sure what she means here.  Is she thinking that she’s likely to literally go crazy as she ages, or is she equating crazy with senility or dementia?  Does she fear specific conditions like Alzheimer’s?  Then give it that name and I will nod about the Alzheimer’s and agree with her that that is terrifying to think about. But anything that terrifies is not an automatic reason to leave the planet early.

My same mother in law had severe dementia at the end of her life.  But every day she had a joy, and she could still say at least two words. “Top Down!” because my brother-in-law was her transport person to the adult day care center, and he has a snazzy convertible.  If my cognition has to erode, then by all means leave me the capability to customize my riding-in-a-cool-convertible experience.  She loved it.

And this last weird connection between another thing Ironside fears…becoming “incapable,” and as mentioned by Clair Lewis above, Ironside’s belief that it should be, “women’s moral obligation to terminate babies who will be ‘severely disabled.’

I don’t know what type of Kool-Aid eugenists are drinking, but I never want to find it at *my* grocer thankyouverymuch.

Do doctors have a standard definition of ‘severely disabled?’ No. Can we guess at time of birth what technological or treatment advances could come down the pike and improve this child’s quality of life, and give them more ways than can be seen in utero or at birth to integrate into society, learn, maybe get a job maybe get married?  No, not for every severely disabled child.

Some will move up on the function scale and a parent simply won’t be able to know early on whether they will improve.
I don’t know (she said snarkily) maybe they should be given a chance to progress…

As for being incapable, of course nobody likes deficits of physical function, or worse the more shameful physical and social limiting that is handed down to the impaired person from outside themselves, from society itself…  It’s not my favorite toy, let me tell you. But, adaptability and eventual acceptance of the “new normal,” can and does mitigate some of this.

Some cognitive changes can also be adapted to, for varying spans of time.  Compassionate care, and good advocacy, caregiving, respite care (meaning giving the main caregiver needed breaks now and then) and good doctoring can help both the patient and those who care for them.

This disturbing utilitarian streak by people like this, and Peter Singer, the if you’re disabled, watch out, we may not let you take your first breath argument It’s not just ignorance…It’s this bizarre, dangerous quirk in some people and as much as I dislike and would mouth off at these people, I’m also just shaking my head and want to ask them, “Where in the **** are you getting this? Mars?

I think examining what living with a disability means over an entire span of life would be a good use of Ms. Ironsides time.

Advertisements

3 Comments

  1. bridgett said,

    Chloe had her first righteous brush with Peter Singer’s “off the disabled for the good of us all” argument in an article about animal intelligence that touched on the “consciousness” debate. When an eleven-year-old can make ethical mincemeat of his position — “what about genetic diversity, Mom? Has he really thought about the power you’d have to give a government to make those kind of decisions and what it would do to individual freedom? Does he consider the socially beneficial effects of caring for others who may need assistance? How about the internal (I think she meant subjective or intrinsic, but she doesn’t know those word) worth of a person’s experience to themselves? And why is he so sure he knows about what’s conscious and what’s not?”

    It was pretty fearsome to watch her go. Raise them to think and damned if they don’t.

    • imfunny2 said,

      Um wow. Thank Chloe for me next time you talk (which of course must be a gazillion times in a single day.

  2. Andrew C said,

    Watch Joni Eareckson Tada on PBS http://www.pbs.org/wnet/religionandethics/episodes/september-24-2010/joni-eareckson-tada/7074/. Recently diagnosed with breast cancer. Joni is one of longest living quadriplegics, best-selling author, acclaimed artist and advocate for people with disabilities.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: