Death before disability!

So. Take an average 100 US citizens aged between 35 and 44. Ask them which would they choose: death or severe disability. 63% of them will say death, according to Forbes.

I have a healthy scepticism when it comes to research generally, but this poll makes for an interesting overview of our American cousins. It reveals that the better the education, the less tolerance for the thought of living with a disability. 57% of college-educated people would rather die, but only 30% of people who didn’t finish secondary school felt the same way. Who’s the smart one?
Could it be that life tastes sweeter when it’s tougher to maintain? Curiously, Southerners believe that life is worth hanging on to more than their West Coast counterparts do, even if it means – gasp! – living it at a disadvantage. I’m not local enough to draw any firm conclusions from that clichéd sounding nugget, so I’ll keep my counsel.
Of those 63% death wishers in the 35-44 age bracket, I ask myself how many are technically obese. There have to be some. I would consider obesity to be a disability. Either minor or major, but debilitating nonetheless. I can’t see them killing themselves to be rid of the debilitation. Well, maybe very slowly.
Ask a person a question and they’ll give you an answer most of the time. Might not be a terribly sound one, but they’ll open their mouth and an opinion will issue forth. ‘Oh God I’d rather DIE than live in a wheelchair!’ Oh really? Oh… really… ? Somehow I don’t think you’ve thought this through, Citizen. Life’s worth hanging on to, and never more so than when it’s dangling by the slimmest.
I am fortunate not to have a major disability. My wife will not vouch for that, but my frequent inability to process the simple information she relays through me does not qualify as a major handicap. (No dear, it does not.) But I stand close enough to one who has a comparative disadvantage. So close that my perspective has changed utterly. And the idea that life is less worth living for my ‘disabled’ son is so ridiculous now – on an emotional, rational, instinctual, practical or whatever-you’re-having-yourself level – that I find it difficult to contemplate even as a theoretical exercise. I am different now. That is all.
I would like to think that if I found myself suddenly blind, for instance, I would still want to maximise life as much as I do now. I cannot be sure, but I am sure that I wouldn’t want to kill myself in preference to at least exploring the options. Why would I? Because of the struggle? Struggle is everywhere. Yes, life in a wheelchair is struggle. And on kidney dialysis. Ataxia. Needing a new heart. Having Alzheimers. Anorexia. But life without any of these factors is struggle too. The older I get the more I see struggle, real struggle, etched on the faces of impoverished children. It still doesn’t make them want to leave the greatest show on earth.

Life is sweet. Even at its bitterest, life is sweet.


7 comments on “Death before disability!

  1. Elbog says:

    I expect a small royalty check.Bittersweet, sounds familiar.
    You have been changed. So have I. We didn’t know, before. Why not? As I used to joke, “That’s a deep subject, for such a shallow mind.”
    There are so many blurred lines. Our heroes used to be so because they achieved through suffering, overcame obstacles. Now they appear on “American Idol”, or are the sons of those who paid their dues.
    My Great Aunt died, this week. She received the diagnosis of a brain tumor about 3 weeks ago. Her alternatives were chemo, perhaps giving her a year or two; if she did nothing, the prognosis was 3-4 months. She said no. She was 92. She played the organ 2 weeks ago at church – she went that quickly. I bring this up, because I know she would not have made the same decision at 35, 55, or even 65. She was able to make the decision. She had the ability to, to some extent, live on her own terms. We don’t all have that luxury.
    Our human nature is such that, the more we think we’re in control, the more we want to be. The problem is with the first part of that sentence. You and I know that to lose control (either through the decision not to test, as we chose, or circumstance), is to gain the unknown. Most of my ‘suffering’in this regard has been self-inflicted, which has brought so much of what I thought I knew into focus and re-evaluation.
    Sorry, it’s been quite a week. We Americans want it our way. Sometimes it’s good; others, well, we don’t really know what good is. We’re fat cause it’s easier to get in the car and go to McD’s than it is to make sandwiches at home. I won’t digress any further.
    I’ll leave the regional discussions for later, LOL.

  2. Nick McGivney says:

    Reading this back, it seems bitter itself at the start. It also seems to be singling out college-educated guys from San Diego too. Whoah there Nelly! Not my intention to be having a go at the Yanks at all. I’m just annoyed – again! I believe that it’s mouth-in-gear, brain-in-park with a lot of these stats. Lack of real knowledge can be a real killer, sadly. My condolences on your loss, Elbog. We’ll talk.

  3. Christine says:

    Bittersweet. Odd, that word has been on my mind all day today. Must be something in the air.

    Elbog, sorry for your loss, but what a life your great aunt must have had.

    “Lack of real knowledge can be a real killer.” I find myself struggling over what is “real” and what we “create” to give ourselves some peace. Does that make any sense?

  4. Nick McGivney says:

    Yeah Chris, it makes sense. But I think you need the added dimension of standing on both sides of the fence for it to make all the sense, iykwim. My fresh perspective on ‘disability’ wasn’t something I thought I’d have a short year ago, but like it or not, I have it now. It’s chromosomal for me too. I can’t unthink it now, and I laugh at the naiveté of my old self who looked at people with DS as though they were some sort of ‘other’.
    With respect to reaching others out there who may be pondering the termination of their Tri 21-positive baby, Karen Gaffney’s dad says ‘We went down the other road years ago. We went to the genetic counselors we knew, and we tried to make contact with others. We offered to meet with expectant parents on short notice so that they could hear our story and meet Karen. No one took us up on our offer.’ You can read more here:

    Between what is real and what we create there is only experience, imho. And I truly am humbled by what better people than me there are out there, with extra chromosomes and without.

  5. hammie says:

    Nick, forgive me. I have your blog titles on my page now and I was afraid to come and visit this one, but I see it’s okay now.
    To me it is a no-brainer. People who live competitive lives in an environment that does not support disability will find it hard to imagine living with one themselves. People who work purely to earn a living, a living that includes friends, family, a social responsibility; they can sense the safety net below them that could allow them to take a tumble and survive.
    I would like to see that survey tried out in more family oriented countries; even where people have a much lower “standard” of living, but probably a a higher QUALITY of life. Because we can value quality.


  6. Emma says:

    Hi, I just wanted to say how moving I found your post and this blog. I don’t have any particular experience of Downs, but these posts are really enlightening, and leave me feeling more hopeful about life in general. Thank you.

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