What each person considers quality of life varies dramatically. For some it may be the ability to rappel. For others, reading the newest research in neuroscience. For another group, it may be eating homemade meals or playing with their kids. If we think of “quality of life” as the optimal situation, then a “life worth living” would be the minimum activities or experiences one could have and still consider that yes, that life is still worth “it”: “it” maybe pain, or countless medications, or tools to support daily living.
(You may have different descriptions for both terms and that’s totally OK.
Just bear with me for a minute).
Fully “abled-bodied” people and people without any neurological conditions tend to pity people who need medications or gadgets to perform daily activities. Disabled people are stopped on the street and told they’re brave for going out on their wheelchair. People’s capacities are underestimated at work and tasks are taken off their plate thinking one is “helping” them. This creates micro and macro aggressions that disabled people face day in and day out.
This situation becomes dire and dangerous when we are thinking about a “life worth living.” There is a point where interventions are not conducted, and treatments are not pursued, based on a more or less arbitrary threshold. It can be age; it can be lifestyle; it can be the idea that a life is ONLY worth living if you can be fully independent to perform this or that task.
Is life worth living only one where you can surf? Or one where you can trek up a mountain? Maybe, at one point in your life. But at another, being able to watch TV with your dog on your lap may be more than enough. A construct studied in positive psychology is hedonic adaptation: the idea that people adapt to new conditions and environments and return to a baseline level of happiness. This means that someone that undergoes extreme events, like winning the lottery or suffering a dramatic accident that renders them paraplegic will go back to their “baseline” emotional state, after a spike in happiness or unhappiness.
A woman I knew, who was always sharply dressed and well groomed, with an active lifestyle, underwent abdominal surgery and, during the surgery, it became necessary to resect her colon to a point that would result in her having to use a colostomy bag, possibly for life. Her family was very worried that she would consider living with a colostomy bag a complete disruption of her life, a definite lack of quality of life and maybe even would turn her life in to a life NOT worth living. How would she reconcile being a sharply dressed, “clean” person with using a colostomy bag? Her family gave approval for this intervention but were uneasy about how to present the news to her.
I learned about this while being away and was able to see her a few months after this. She was dressed just as sharply as before and was as well groomed as ever. The colostomy bag? She showed it to me and told me all the tricks she had learned as to how to clean them and make them last longer!! There was absolutely no change to her demeanor, her joy of living or her attitude. Much less had there been a change to her social interactions. If anything, she had a fun fact about her to chat about. And she had learned that several of her friends also shared her situation.
I have been privy to other situations where doctors hesitate too long in pursuing treatments or interventions, and one wonders if the delay in undertaking those treatments could have worsened the health of those patients or precipitated their death. In some cases, the basis for hesitation is the poor understanding of what a life worth living is for the patient. The medical professionals use their own standards for quality of life or a life worth living on those patients, instead of figuring out what the standards of the patient are (this is a good article on this topic, worth reading).
This misguided projection of their own standards onto patients can be done with elderly patients for whom yes, being able to watch TV in their living room is all they need to consider their life worth living. They no longer yearn for travelling and climbing up the Eifel tower, or going down river rapids. And it can be done with people who have conditions the health professional may personally consider terrible. In the worst-case scenario, it could lead them to hesitate to save the life of someone with severe cerebral palsy or certain types of apraxia or some other condition they deem “unbearable.” Or the health professional would not want to perform a surgery that would make an active hiker become a wheelchair user. I shudder to think that there is a health state classification system that can determine a patient is in a “State worse than Death.” (This system is based on five areas: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression).
The health professional who uses their own point of view and life experience to determine that a patient’s life is not worth living or that their quality of life is nonexistent because “I would not like to live like that” or “I would prefer to be dead” should NOT be treating that patient. And, since we do adapt to different circumstances, health professionals should NOT use the patient’s own old opinions as current. It may very well be that something one would consider terrible at 50 is something we’re OK with at 70. Our views and feelings can change.
This can also influence the way we interact with people who are different from us, even when we have a disability, because we are used to our disability but consider that of others a burden. It can even be seen with dietary restrictions. I have a friend who is vegan; I cannot eat gluten. At some point we were chatting and realized that she thought my gluten free condition was more difficult to deal with than her being a vegan. I thought the opposite way. I have since learned that I have also lactose intolerance and intolerance to soy, crucifers and some fructans (like beans and onions). My husband, who has several food allergies, considers very difficult to cook thinking of all my intolerances while for me they are not a huge deal. My dietary restrictions create many complications and ban many food items from my diet, but my intrinsic quality of life remains the same. I would consider them a minor issue in the great scheme of things.
A major issue, though, is how we view neurodivergent and disabled people in general. And because many of us also think of our own measures of quality of life, we tend to pity disabled people and their families. We are oblivious to the fact that many things in our life that could be pitied by others, because that’s our normal and we are used to it.
It is important to always think that people can live high-quality lives and thrive in situations we cannot envision as being satisfactory for us. We cannot assume what quality of life or a life worth living means for someone else. And honestly, even for ourselves in the future. We should remain open-minded and hear what the others have to say. And respect them.