Rather Be Dead Than Disabled?

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If you’re American, 52% of you said yes…

This was the news released in a recent survey commissioned by Disaboom.com. There’s a very insightful breakdown the numbers at WhyNotRachel.com. In fact, the wealthier you are, the more likely you are to choose death.

Much earlier in life, I might have answered the question the same way.

But, then, two things happened that changed my world and, in turn, my understanding of the issue.

When I was a little kid, my best friend’s dad was diagnosed with MS. My recollection was that he was in his late 20s or early 30s. He was a big, athletic, vibrant guy, filled with machismo. The one you’d expect to fall squarely into that 52% with his answer. But, instead, he took a different approach.

He not only chose to live with every fiber of his being, he stayed home until the very end.

While there is still no cure, therapies and treatments for MS were nothing like they are today. So, there came a time where he could no longer move, then no longer take care of himself. He would lie propped up in a big old chair in between the open den and kitchen, right in the middle of everything.

Life happened all around him, all day long.  After he’d lost the ability to speak, his only mode of communication was to blink.  One for yes, two for no.

This was the man you’d expect to be in the 52%, but he wasn’t.

Because he loved his wife and adored his kids on a level that, for him, outweighed anything else. For as long as he was capable, he wanted to, at the very least, be able to watch his kids grow up, grow wise, fall in love, laugh, cry and just participate in life.

To him, there was no greater gift. And, as long as he could receive it, he chose life. His wife asked him whether he wanted to keep going many times. And, until the end, the answer was always yes. After nearly two decades, he finally passed, complications from pneumonia.

Before I was a father, I’d have very likely been in the 52%.

And, though, you can never answer the question in earnest without being disabled, the circumstance of a disability would impact the answer and it’s a position I hope never to be in, for the same reason my friend’s dad chose life, I believe I’d do the same.

But, there is a second reason that has compelled a change in the way I’d answer this question.

Just this year, I finished writing a book on coming alive with a focus on career. The process of writing that book required a tremendous amount of research over the last two years. Much of that research is in the book, but much of it was also edited out. Among the edited material was a bit of research that blew my mind.

We are all astonishingly capable of habituating to a change in circumstance.

According to Happiness Hypothesis author and psychology professor, Jonathan Haidt, we have a remarkable ability to habituate to circumstances and surroundings.  This ability can serve as a powerful buffer to untoward circumstances and it can also, just as quickly, dissipate the sputter of increased joy that follows a positive change in circumstances.

In fact, accordingly to Haidt, a 1978 study led by researcher Philip Brickman contrasted the overall happiness of the average Joe with that of 22 recent lottery-winners.  Remarkably, despite grossly differing circumstances, levels of wealth and good-fortune all reported nearly identical levels of overall happiness.

The lottery winners had quickly habituated to their new levels of wealth, leading Brickman to describe the relentless appetite for more as a “hedonic treadmill.”

Even more fascinating, in that study, Brickman went a step further.

He contrasted the overall happiness of a group of 29 people who had recently become paraplegic or quadriplegic and found little difference in overall levels of happiness from able-bodied people.

About this, Haidt writes,

The winner’s pleasure comes from rising in wealth, not from standing still at a high level, and after a few months the new comforts have become the new baseline of daily life.  The winner takes them for granted and has no way of rising further…

At the other extreme, the quadriplegic takes a huge happiness loss up front.  He thinks his life is over, and it hurts to give up everything he once hoped for.  But, like the lottery winner, his mind is sensitive more to changes than to absolute levels, so after a few months, he has begun adapting to his new situation…He has nowhere to go but up, and each step gives him the pleasure of the progress principle.

So, how we “think” we’d feel about a dramatic change in life, both positive and negative is very often radically different than how we’d “actually” feel, should that event occur.

Knowing this would’ve caused fewer raised eyebrows when, in 2004, wheelchair-bound physicist, Stephen Hawking, told the New York Times, “My expectations were reduced to zero when I was twenty-one.  Everything since then has been a bonus.”  (12/12/2004 NYT Mag 37).

It appears that able-bodied people have a remarkably distorted view of the lies of people living with disability.

I don’t claim to know the daily challenges and struggles of anyone living with a disability, but it seems the gap in perceived reality and reality is, indeed, fairly massive. Large enough to fuel 52% of able-bodied people to believe, should some serious disability befall them, they’d rather be dead.

In the end, it’s a question nobody likes to think to about.

But, exploring the answer, or at least exploring why you’d answer the way you answer is a powerful process. At a very minimum, it will likely change the way you relate to those in your life and those who pass through your life who are living with disabilities.

I’d love to know how you guy’s feel about this. Is it something you’ve ever thought about? Are you on the other side of the question, living with some phsyical disability? Do you share your life with others who do? Are you shocked by the survey results?

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29 responses

29 responses to “Rather Be Dead Than Disabled?”

  1. Mary says:

    Jonathan,
    I loved the article. The survey results do not surprise me. My husband and I have actually discussed the issue before. I agree that you don’t really know how you would react untill put into the situation. We are both vey active. We run, bike,own a home building business and I am a part time fitness instructer. I would hope being put into the situation would somehow actually enrich our lives. My husband has already said he would not want to go on. But I hope that is not true.

  2. Better dead than disabled? . . . that’s because the respondents weren’t disabled.

    Norman Vincent Peale gave a speech when he turned 80 years old and after the speech, a student approached he and said, “80 years old, Dr. Peale I don’t think I would WANT to be 80 years old.”

    Dr. Peale said, “Son, that’s because you aren’t 79.”

  3. Marf says:

    Great, thought-provoking article. The nature and ingredients to happiness – this is a topic that every rational human being should explore and discover answers for themselves.

    Unless, of course, they aren’t big fans of being happy.

  4. I saw something on tv once, where a guy either lost his legs or was born without them. What did he do? He strapped wheels on an appendage so he could dance.

    I saw that and thought, “Man, if I ever lost my legs, THAT’S what I’d do.”

  5. […] Go to the author’s original blog: Rather Be Dead Than Disabled? […]

  6. You never know what you can handle until you’re faced with the circumstances. There is an amazing core within every human to live life fully. Sadly, many people don’t seem to know it’s there or how to access it.

    Happiness is choice in my book. Even in the most dire situations, you can find little blessings.

    Great post Jonathan!

  7. […] just finished reading a post on Jonathan Fields blog – Awake at the Wheel, which said that 52% of Americans would rather be dead than […]

  8. Hi Jonathan,

    This post got me thinking – Handicapped means challenged and we are all challenged in one way or another. Being physically handicapped is a challenge that others can see. Being mentally, emotionally or socially handicapped may not be so obvious, but it can be equally disabling.

    No matter what challenges we face in life, the meaning of those challenges is always our choice. With the right mindset we can overcome any hurdle, rise to any set of circumstances and conquer any challenges.

    We all do well to remember, it’s not what happens to us that’s important in the long run – it’s how you decide to deal with it.

  9. Rachel says:

    A plug with sincerity:

    If this topic is of interest to you, please visit my blog…Often.

    I am a legally blind woman writing a book about how to live fully.

    I am asking people to USE such “opportunities” such as disability, job loss, and/or illness to make their experiences and lives more purpose-filled.

    I think the quality of conversation that Jonathan has stimulated here is wonderful.

    I value your input,
    Rachel
    http://whynotrachel.wordpress.com

    PS:
    …A big amen to the post before mine.

  10. Robyn says:

    I guess my choice would be to go on at least for a while. However, having been a caregiver, how long I wanted to continue might depend on how my family was doing while taking care of me. I would not want to see them stressed out and sleepless, financially ruined, physically and emotionally drained while keeping up a brave front. Everyone’s tolerances for challenge are indeed different. But as others have pointed out, one can never know how one will really react until the unthinkable actually happens.

  11. Shama Hyder says:

    Jonathan-

    You ask some tough questions!

    I think the human spirit is very resilient. That being said-in all honesty-I am not sure I could answer this question!

  12. You’re right that none of us REALLY know how we’d answer this question unless we were put in the situation. But the ability of us to adapt to new situations makes me want to believe that I would want to live as long as possible so I could see my grandchildren grow up.

    I was surprised years ago to discover that even positive changes in our lives bring on stress and require adaptation. When I moved to a new job, house, new city about 20 years ago I experienced a horrible anxiety attack. Everything in my life was wonderful on the surface, but changing everything at once took its toll. Because the attack came on while I was driving the freeway, I developed an accompanying driving anxiety. In So. CA that’s a terrible turn of events. It took about 2 years for me to work my way out of it.

    Please don’t think I’m equating my anxiety attack with permanent physical disability. There is certainly no comparison. My point is that whether new circumstances are debilitating or exhilirating, we have lots more resilience than we think we do. Living life with the intent to be happy regardless of circumstances is the best plan of all.

  13. Nickey says:

    Wow – great post, Jonathan.

    Very thought-provoking for me. My husband had a brain aneurysm rupture in 1995. Here’s a different but similar question: would you rather be disabled and have your sound mind, or would you rather be brain-injured? Anyone out there know what I mean by this?

    In any event, you do adjust, you are able to go on and you do it with style. So many people said to me, “I don’t know how you do it – I could never go through that.” Well, guess what – you can! We ARE very adaptable people and it IS entirely in your attitude. And I would hope that if I were to become disabled – and granted the gift of keeping my mind – there are a ton of things I could still do and I would certainly want to watch my children – and grandchildren – grow.

    And look at all the good Dr. Dan Gottlieb does. Talk about adjusting to disability!!

  14. Susan Kuhn says:

    The original blog entry (whynotrachel.com) is quite interesting…the “Rachel” in question is a legally blind visual artist. While those who are not disabled (myself included)seem to look at this as black and white (dead or alive), Rachel’s blog is full of the richness of her experience navigating the world with both her disability and her just plain human needs and desires intact. I commend the blog to all.

  15. Jonathan,

    Thanks for this post. When I was a young person, just out of college, I worked as a nanny for a family who needed me because the mother had fairly advanced MS and could not care for her two little ones anymore. Like your friend’s Dad, she was determined to be at home and be a vibrant, important part of their lives, and oh, was she. I think you are absolutely right, children make a big difference to how you answer the question.

    So did caring for her and her girls. The inspiration of watching her squeeze joy from her days to shower it on everyone she knew humbled me and made me determined, if I ever had to be in her shoes, to try to live up to her beautiful example.

    Regards,

    Kelly

  16. riva says:

    I think it’s sad that 52% of people think they would give up that easily. And apparently have such a low opinion of what the life quality of a disable person is.
    Our karate school has programs for the blind, hearing impaired and developmentally disabled. They are an inspiration to me every day.
    I feel sorry for the respondants. But I hope they have the opportunity to have life experiences that change their minds and open their hearts.

  17. zania says:

    Having worked in care myself, I agree with Robyn.

    I like to think I would choose life, but thinking that my family were stressed out permanently from helping me live, I would wonder if they would grow to resent my struggle to stay alive.

    That may sound harsh, but even when a person is loved a great deal, constantly caring for them can lead to resentment (and thus guilt from those doing the caring and the resenting). It’s a horrible situation.

    There is, however, one case I know I would wish for death, and that is if I was in constant, untreatable pain. But I don’t even want to contemplate that.

  18. Jonathan Fields says:

    @ Everyone – hey gang, thanks for an always genuine conversation. I realize this was a challenging topic to share on.

    I nearly deleted the post just seconds after putting it up, because I am not completely comfortable with the process of either asking or answering the question myself and I wasn’t sure how everyone would react. Thankfully, I’ve learned to have faith in you guys and I let it ride.

    Thank God I did, it’s always great to have the benefit of different approaches and interpretations.

    And, a big thanks to Rachel for joining in and offering her insights through her personal and direct experience exploring, as she put it, the “opportunity” of disability. What a fresh, different perspective.

    One of the things the conversation has reminded to do is make sure I connect with the gifts in my life every day. To live from a place of gratitude. It’s so easy to lose that outlook.

    With incredible gratitude to all you guys!

    j

  19. STL Mom says:

    As an occupational therapist, I have worked with people who have mental and physical disabilities, some of them severe. And I would gladly switch places with almost any of them if the other option was death. Every life has some joys, some satisfactions, some pleasures, some laughs.
    But please, everyone, get disability insurance. It will be a lot easier for your family to enjoy your presence if they aren’t going broke caring for you. If you are under 60, you are more likely to become disabled (at least temporarily) than you are to die.

  20. Larry says:

    When in the deepest bouts of pain – I want to die but I know that if I can just get past the next minute I want to live. Pain can be the invisible disability, just as destructive or just as constructive in one’s life. Pain can pass while a physical disability does not. I would not want to choose which one to have.

  21. So funny. I did not even know about Disaboom until I was asked to be interviewed for it by a new friend who happens to be deaf. I have Crohn’s disease–an auto-immune disorder affecting the digestive tract–and six years after diagnosis, I don’t even think of it as a disability (except when it comes to getting health insurance. Sigh…)

    It was an education getting whomped even by something as minor as Crohn’s (although my onset was pretty dramatic, according to everyone who thought I was going to die those first few weeks). Ultimately, it was the trigger that got me to start living my life fully: I totally “get” why Hawking et al would view things that way.

    It’s really like that Chinese farmer parable: good luck, bad luck…who knows?

    It’s a thing. What you make of it is really up to you.

  22. This isn’t something I’d given much thought to previously. Even after reading this, the question seems to hit me as more relevant to my loved ones–as in, “Would they want to live?”

    And I’ll be honest, I’d be kind of insulted if they said they wouldn’t. Body parts are worth more than my love for you? Thinking of it from a loved one’s angle gives me a bit more perspective–enough to say that my answer would have to be life. Always life.

  23. Laurie says:

    I think which one you choose debends on the mindset you have. Do you have a fixed mindset or a growth one? I would chhose life.

    There is a 40 something year old woman in our church facing cancer surgery where the plan is to amputate her leg and part of her pelvis. Her attitude is inspiring. Yes she is mourning the change she is probably going to face but at the same time she knows God has a plan for her to live with it. She is amazing.

  24. James McGrane says:

    This hits home for me as well. I married a woman who has MS and told me on or first date. She lives a normal as possible life, only real problem is having to use a cane or my arm when she walks. The thing is , before we even married she ended up in the hospital from complications. Everyone expected me to leave her, but I didn’t. I stayed, and I know if things get bad, I’ll keep staying and I know she’ll be here living her life to its fullest.

  25. Yoav says:

    Amazing Post Jonathan

    In my experience the 2 things that make you want to live are:

    1. Kids
    2. Close encounters with death

    I’ve had both and my will to live and live fully has grown tremendously.

  26. I used to have this adamant belief that I’d rather be dead than disabled or disfigured. I now tend to see this viewpoint as being based very much in the ego.

    Over the years I have come to see life as a magical thing, a gift in the truest sense of the word. I would obviously find it very difficult to be disabled, especially if I was unable to communicate with people. But as a mother, I would give anything to be with my son for every day God chooses to keep me around. If that in a wheelchair or missing limbs then I guess so be it.

    Finding the joy in life is really a matter of looking for it. After this depressing thoguht, I’m off to find myself some.

    Kelly

  27. I have Bell’s Palsy and enjoy your blog very much. First time I’ve commented, but have been reading here and there.
    Great blog. I enjoy reading it every chance I get and value your opinions!

  28. Thea says:

    My sister had cystic fibrosis and lived with an advanced stage of it for 20 years. At one point, she was asked to participate in a survey to determine “quality of life.” Her physicians, nurses, etc, answered their own version of the survey and were stunned to find that they painted a much bleaker picture of her quality of life than she did — and she was the one going through the pain and 24/7 problems of the illness. She loved life and, despite her illness, she lived as rich a life as she could: a prolific artist, a loving volunteer, a rock-n-roll-aphile… She touched so many people’s lives. I know for a fact, she knew she’d made a difference.

  29. Karthik says:

    Four years ago, I met with an accident and I’ve been confined to my wheelchair since then.

    Able-bodied people, to get a feel of what a disabled person might go through, imagine themselves spending a whole day in a wheelchair.

    They mistake relating a day’s experience to what a disabled might go through for the rest of his life. But what they do not realize is that the most difficult part is that first day.