Who gets to decide what “Quality of Life” is and when is a life worth living?

…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.

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.

The insidious Imposter Syndrome Myth

I have a peeve with the Imposter Syndrome Myth. I’ve gone to several Imposter Syndrome-themed conferences, talks, workshops, community dialogues, you name it. I’ve watched TED talks, read articles and books. It is part of the curriculum of a course I teach to incoming first year students every summer. And you know what? I hate it.

Imposter Syndrome is, deep down, victim blaming. It is posited as something “you” have and suffer from, something “you” must overcome to be successful or feel successful. It is presented by successful people in talks and conferences as something they suffered from as well, and they surpassed it once they learned to be comfortable in their skin. You can do it too!

But here’s the thing. Nobody is “born” an imposter. It does not appear out of the blue. Imposter Syndrome is not something we create from within.

Imposter Syndrome is a symptom of a segregationist, discriminative society.

Who feels imposter syndrome? People who have a certain level of achievement in an area where few people like them succeed. This can be women CEOs or scientists, college students of color in a predominantly white institution, low income students in private colleges. Neurodivergent people in… well, most anywhere where social norms or certain rules or skills are crucial to succeed.

The imposter syndrome is imposed upon people and it is a natural response to discrimination. If you hear people speak about their experiences, you’ll see a pattern of demeaning attitudes from authority figures and from peers.

Dena Simmons speaks about how her pronunciation was mocked at a private boarding school and how her teachers gave her frequent lessons in public about how to pronounce words, such as “ask.” My summer students speak about their high school classmates, school counselors and teachers implying or directly telling them they don’t deserve to be in a highly selective college. That they only got in thanks to affirmative action and will not succeed.

I doubt there is anybody who suffers from imposter syndrome, or has faced it, that doesn’t have had such an experience.

People who “overcome” imposter syndrome don’t do it thanks to society. They do it despite society. Because the same messages that created their imposter syndrome are ever present and don’t go away easily. They do, eventually, when a person is successful enough to be considered an exception. They are considered as an isolated phenomenon but the prejudices about their demographic/identity group don’t go away. Having Oprah Winfrey be incredibly successful and admired has not lessened the discrimination of Black women. Knowing that Michael Phelps and Simone Biles have ADHD has not made people accept the talents and capacity of people with ADHD (or even believe that ADHD exists!). Awareness of Anthony Hopkins’ autism has not lessened prejudices against autistic people. Disabled people are still deemed “brave” for existing.

We need to stop blaming people who face imposter syndrome. We need to stop saying it is something that is up to us to overcome. We need to take responsibility as society to prevent imposter syndrome from arising at all. We—parents, teachers, advisors, and other adults—have an obligation to our youth. We need to teach them acceptance and inclusion. But true inclusion, without pity; we need to really believe in the intrinsic value of all people.

And it can start with simple tasks. Check your privilege. Don’t make assumptions about someone’s potential based on a given identity that you think is “less than” yours. Create a mental portfolio of successful people from this and that identity you don’t share and start believing the successful people you admire within that group are not the exception and could very well be the norm. Speak to a therapist. Read blogs written by people of color, neurodivergent, disabled, low income, religious minorities, anything that triggers your biases. And, in the meantime, keep your prejudiced thoughts to yourself.

Fake it till you make it.

A personal experience about Autistic Masking…

The post below was written by Kitty McGnarlson, #ActuallyAutistic, on her Facebook wall. I asked her for permission to share it on my blog. I believe it is crucial for non-autistic family members and friends (teachers, therapists, counselors) of autistic people to hear from autistic adults, especially when your loved one cannot communicate clearly their thoughts for whatever reason (including being too young).

 

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I’ve noticed a lot of curiosity regarding more and less “visible,” or “hidden” expressions of the autistic brain.

Each autist, like each human, possesses a unique combination of skills and challenges. Some of us possess skills that make it easier for us to learn spoken language(s), mimic the social cues of those around us, and hide the parts of us that do not fit in with the relevant cultural stereotypes; for those with different skill sets, this “extra work” can be difficult or impossible.

Autists who you think “look” or behave “less autistic” are those who:

  • benefit from the privilege of being able to mimic traits which non-autistic society values, and
  • have poured years of exhausting effort and painstaking analysis into each and every one of their social interactions.

This is one of the less visible ways in which autists are oppressed and disabled by our social environment. Continuous masking leads us to feelings of hopelessness, identity crisis, lack of purpose and direction, and an extreme form of isolation (because very few people get to know the “real us”).

This, in turn, leads to a larger rate of mental illnesses in the autistic population. It is estimated that 35-40% of autistics suffer from anxiety disorders. About the same number suffer from depressive disorders. Amongst women and trans autists, the statistics are even higher.

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I’m going to share a bit of my personal experience with masking.

As a child, one of my preferred soothing mechanisms (or “stims,” as they are often called) was to repeat a single syllable over and over, while tapping my foot, bouncing up and down, or rocking back and forth. This repetition of one’s own words or syllables is known as “palilalia.”

I would sit in my bedroom and say, “Ruh, ruh, ruh, ruh, ruh.” I’d repeat the syllable in sets of five and then start over again, until I felt satisfied.

One day, when I was around 9 years old, my father overheard me from the living room. He burst through my bedroom door and looked at me with anger. He yelled at me: “What the f*** are you doing? Are you a f***ing re**** or what?”

Humiliated and terrified, I stuttered, “N… no,” and became aware of the need to hide my soothing mechanisms even more carefully, and even in my own home.

I experimented with alternative and less obvious forms of stimming. It didn’t always work. My dad would threaten to take away my possessions or “bring me to the loony bin” if I wouldn’t stop frantically shaking my foot when I was nervous.

At school, it was always pen-clicking, crossing one leg over my knee and bouncing it, or pencil spinning: the OG version of the fidget spinner. 

In high school, I remember being made fun of for stimming with a pen that was shaped like a sturgeon. I had borrowed the silly thing from the teacher. The boy who sat just behind me made a sexual comment about my fascination with the pen. The entire back two rows of the classroom responded with laughter. They grew increasingly audible and bold in their mocking.

I turned so red that I could feel my cheeks burning, and I put the pen away at the expense of my note-taking, and I held my breath, and I wished I could disappear. By this age, my anxiety was constant, but this specific episode sent me into my first truly debilitating panic attack.

I choked to the teacher that I had to use the restroom. I ran out of class and sat in the bathroom stall, rocking and dissociating, shaking and repeating syllables, with tears streaming down my face. I stayed there until the school bell rang, signaling that it was time for the students to make their way to their next classes.

After decades of living with a fear-induced obsession with “fitting in,” I got to the point where I could almost — almost, but *never really* — pass as a non-autistic person. I was always considered the “weird girl,” the “embarrassing friend,” or the “crazy person.”

Some people found my “quirks” amusing or endearing, and befriended me with glee; many others found them strange and refused me altogether.

A lot of my peers didn’t like me, and I kept myself up nearly every night, wondering what I was doing “wrong.” It seemed as though the harder I tried, the less I was accepted. No one knew I was autistic, but everyone knew I was different.

Only since I received my diagnosis have I slowly begun to accept and reintegrate the “behaviors” and expressions that I’d hid for so long. As I become more self-accepting, I also become less anxious.

Thank you all for reading and for letting me share these experiences with you.

Each time that I reveal myself further in this written form, some of the weight is lifted…

Culture clashes

…when you are “neurotypical” and are raising a child who is neurodivergent, it is like raising them in a different culture.

As parents, we try to do what we believe is the best for our kids. Some of us read lots of books, some consult with psychologists, some with school staff, or go to workshops (maybe watch parenting videos too?). We try.

When we are raising a child in a different culture, it gets more complicated than usual. Maybe manners are different. Like how you interact with people when you enter a room. Do you say hi to everyone? or each person? Kiss, hug, look them in the eye or not? In Mexico we kiss everyone on the cheek (normally the right one, by the by, all need to go in the same direction to avoid… uh… accidents). But in Italy is on both cheeks, Switzerland it’s three kisses, US… none.

I would argue that when you are “neurotypical” and are raising a child who is neurodivergent, it is like raising them in a different culture. Their culture is different from yours. Only, they don’t need society to instill those manners or behaviors in them, they are born knowing that culture and behaving consequently.

If you have lived abroad or immersed in a different culture, you’ll agree with me that there are tons of behaviors, customs and phrases that don’t make sense to you. You can *understand* that it is important for *them,* but you won’t *feel* it in the same way. People from Germany and other “orderly” countries can suffer in Mexico because there seems to be chaos all the time. People say they will come to your birthday party but won’t show up. Or they come two hours later and won’t realize they need to apologize. They say “maybe” when they mean no.

So… imagine you’re a Mexican raising a German. It can be very, very frustrating, especially since you’re Mexican, and you had another child who behaves like a proper Mexican and you don’t understand why this one is behaving like a German.

Your neurodivergent child comes in a nice neurodivergence package. Unfortunately, some parents don’t realize this (they don’t know about neurodivergence or they have been told their child is “neurotypical,” aka not having any neurodivergence). These parents then keep trying to raise the child as “neurotypical” but they will invariably become frustrated, because the child cannot understand the reasoning behind the manners or behaviors their parents are trying to instill in them. Or can understand the reasoning but don’t really “feel” it and will commit faux pas after faux pas.

Now, there are parents who DO know their child is neurodivergent. Then the options are basically to educate them as if they were “neurotypical,” which will lead to frustrations like those experienced by parents who aren’t aware of their child’s neurology. Or they could raise them keeping in consideration that they are neurodivergent. A third option is to keep in consideration that they are neurodivergent BUT try to have them adapt to “neurotypical” ways, manners and behaviors.

There are many therapies that try to “help” achieve an “optimal outcome” that means that the child will be “indistinguishable from peers.” This, arguably, would lead to societal acceptance, better treatment from peers, a good job, better grades and better quality of life.

But… it does not. What is achieved with “indistinguishability” is actually what neurodivergent people call masking. Basically, it means playing a role all day in front of others, fearing that being themselves will lead to societal rejection, poor treatment from peers, bad grades, no job and low quality of life. The person inside doesn’t change. It’s only what is shown to others that is portrayed differently.

Does masking lead to societal acceptance? Hmm. Probably some, but not enough to be worth it. Masking is hard work, and it would require to keep in mind all types of situations. You’re bound to mess up sometimes (just as one does in a different culture). The more time you spend with someone, the more likely they’ll detect a crack on your façade.

What about treatment from peers, romantic relationships, raising your children? I’d believe it’s the same as above. Plus, the added stresses from any relationship would put a strain, and masking can become even more difficult (again, I’m drawing from my experience in other cultures, or even different types of society—imagine living for a week with a family with a very different socioeconomic status from yours, pretending you’re “one of them.”) Child rearing is extremely stressful as it is, and you’ll have different perspectives on how, why and when to discipline your children than your partner’s. This is specially draining if your partner doesn’t have your same neurology.

Bad grades? Actually, probably your grades in college would suffer if instead of playing to your strengths by studying what you like and are good at, you study whatever you think society is demanding of you. Or if you don’t study in the way that makes you learn better, because you’re trying to study like the rest. And masking would imply that you don’t request necessary accommodations, which will take a toll on your academic performance.

Job? Are you kidding me? People who were diagnosed as adults say they suffered because they were not receiving accommodations, peers were not patient with them, they could not keep a job. People who mask have reported similar situations.

Better quality of life… imagine living in a lie. Pretending to be religious in a super conservative society. Gay in a homophobic one. “Neurotypical” in an ableist one. People who mask have seen that their self-worth is hurt; they suffer from depression and anxiety. It has been studied in girls and is believed to be a main cause of late diagnosis, which in turn cause these girls to receive services and help later on in life than otherwise. As Kieran writes, masking is not adapting to change. Masking is tiring and causes anxiety. Ryan Boren links masking to burnout.

If you were masking, you would always be wary of new people. What if they like you, you become friends, and then you lower your guard, they see the real you, get freaked out and you never see them again. You’re never able to relax with a friend. It’s like being undercover, always in danger of being discovered.

When we train (or drill) our kids to become “indistinguishable from peers,” we are teaching them to mask (or camouflage, as it is also called). We’re leading them in the wrong direction. We’re leading them to low self-esteem and exhaustion. They don’t deserve that. They deserve to love themselves as they are, and to be loved without masks. Maybe they’ll have fewer friends. So what? Those few will be real friends. They’ll be able to relax and actually enjoy being with them.

We should teach our children how to interact with “neurotypicals,” for sure. But never at the expense of their individuality and dignity. “Neurotypicality” should be shown as just another culture and not as the correct and best way of being. Because it simply isn’t.

Otomi Dolls
Since I mentioned Mexico… shown are two dolls made by Otomi women in my home state of Queretaro. On the left is a boy, wearing a whitish hat, his black hair is showing a little bit and he is smiling. On the right is a girl, her hair is black and long, braided with ribbons. She’s also smiling.