Warning: this post is long, and heavy at times. It will probably contain mistakes. I may use terminology that is incorrect or outdated (or will be outdated soon). I’m probably going to express ideas that offend someone, as hard as I try not to. Please try to stick with it anyway, because what I’m saying is very important.
The post I’ve been working on, about how to improve situations for people with severe developmental and intellectual disabilities, ties back in to a conversation I started on social media several years ago but never managed to finish because my brain fell off a cliff halfway through. I never forgot about it, though.
The conversation was about serious disability and suffering. It was one of many similar conversations I’ve had. They start with a caregiver or doctor or nurse coming to me and saying something like, “yes, I see what you’re saying about all lives being worthwhile and everyone having potential, but aren’t there rare situations where someone is so extremely disabled that they really can’t possibly enjoy life and might be better off dead?”
These questions come from honest compassion. They come from an experience, or many experiences, in which the person asking me about this has watched someone suffering. The patient/client/family member they are thinking about has extreme disabilities, both physical and mental. They will never speak or use an AAC device. They will never be able to do anything for themselves, or even make choices. They are in pain most or all of the time. And it’s this pain that bothers their caregivers most. How could it not?
This particular conversation was, I believe, with a woman who did some kind of nursing care professionally. She spoke about how we have defining moments in our lives, and this was one of hers: a patient who was an adult with Trisomy 21 (Down Syndrome), who was profoundly deaf, completely blind, incapable of independent movement (not paralyzed, I believe, but unable to sit or stand, like a young infant.) He had extremely limited cognitive abilities and had never developed any kind of language use. He spent his life in a bed, often moaning or whimpering in pain, and being periodically fed, cleaned, and turned to prevent bed sores. That was it.
What kind of quality of life could he possibly have? she asked me. How could she offer him any sense of agency or any choices or any ability to communicate (the three things I identified as most important for a disabled person to have) when he couldn’t see or hear or understand anything at all?
She felt that she was being asked to torture this man by keeping him alive in this state. (I’ve heard similar concerns from doctors and nurses who have to perform painful interventions on dying patients, in the hopes of giving them a few more hours or days at most, but I’m setting aside, for now, the issue of end-of-life care.) She pointed out that if you were caring for a non-human animal who was in that much pain, most people would consider euthanasia the merciful choice (not everyone will agree, of course). She wouldn’t want to live in this condition– who would?
My first question, of course, was why he wasn’t being given better pain management. According to her, his advocate wouldn’t let him be put on more serious pain medication (narcotics, presumably) because he lacked the capacity to provide informed consent. Ok, the first thing he needs is a medical ethics review and a new advocate.
A lot of things were wrong with this man’s care long before this nurse entered the scene. It’s no wonder the situation appeared hopeless to her. It took me a while to unravel it enough to see where the real problems were — and they are things we take for granted, like the idea that severely disabled people should be cared for in an institutional setting rather than at home surrounded by loved ones.
But let’s start with another thing we’ve forgotten to question: the assumption that anyone could possibly know this man’s mental capacity. We’re bad enough at measuring intelligence in a person who moves independently and can speak. Yes, we know that Down Syndrome usually causes some level of intellectual impairment, but unless a person is actually missing their neocortex, the physical organ necessary for conscious thought, we really don’t know how much learning their brain can or can’t do. Even fMRI brain scans only give us the vaguest look at someone’s mental activity.
We all know the story of Helen Keller, who became profoundly blind and deaf at age 2, but eventually learned language and became an eloquent writer and political activist. The really amazing thing about her story, it occurs to me, isn’t how much she learned, but the fact that anyone even bothered trying to teach language to a child who was blind, deaf, and at age 6 reportedly behaved “like a wild animal.” If she had been born with her disabilities, rather than acquiring them at the end of an infancy in which she showed recognizable signs of intelligence, would anyone have even considered the possibility that she had the potential to learn? I am not saying everyone has the capacity to be a genius. Keller was an exceptional human being. But our brains are remarkably malleable things, and someone’s current level of ability says very little about what might develop given the right environment.
Less than 100 years ago, parents whose children had Down Syndrome were told that those children would never walk, talk, or survive to adulthood. Doctors counseled these parents to mourn these children as if they were already dead, and abandon them to institutional “care” for however long they might survive. Now, many children with this diagnosis walk, talk, attend school, grow to adulthood, hold jobs, and get married. They are more prone to certain medical risks, often do have some level of intellectual disability, and have a shorter life expectancy than people without that particular genetic condition, but their prognosis is still strikingly different than it used to be.
Why do we assume that we now know everything and that no further improvements can be made in these people’s lives? The arrogance of this belief is appalling. Perhaps in another 20 years, we’ll be repairing heart valves with nanotechnology and stimulating brain development with medications, and their lives will be barely different from those of “normal” people. (Whether normality is the goal we should be aiming for is another discussion.) And then we’ll look back in horror at how little we knew today.
But let’s assume, for the moment, that against all the odds, everything possible was done for this man when he was a child. He was given intensive lessons in tactile sign language, as Helen Keller was. He was offered some system whereby he could communicate his wants and needs by pressing buttons of different sizes and shapes and textures, or that gave some kind of haptic feedback. And let’s imagine that he still didn’t learn any language or show other indications of conscious thought. We still couldn’t know whether or not he understood things and simply lacked the motor skills to respond. And I’d argue that there are still ways he could be given choices, mental stimulation, and enjoyable experiences.
(I want to clarify here that I am certainly not blaming the nurse for not providing these things. Her training told her it wasn’t even possible. And if she did happen to think of any of them, she probably wouldn’t have had the time, resources, or legal rights to make them happen. It’s not like she could just stick this patient in her car and drive him to the beach for the day. And many of the things that would have really improved his life needed to be done years before she met him.)
Did his family ever take him to the beach when he was a child? Did they even have access to a beach? Were they too busy and too broke from dealing with his medical issues to think past the basics of keeping their son alive? Did he even have a family involved with his care? I have no way to know. But that’s one of the first things I’d think a blind and deaf person might enjoy. A trip to the beach is an immersive sensory experience. The textures of sand and moving water, the heat of the sun and the smell of the sea, these don’t require eyes or ears or independent mobility to enjoy. If I were caring for a child with these disabilities, I’d pour warm sand over his body, dip his feet into chilly waves, give him slippery strands of seaweed to feel, fold his hands around the shapes of rocks and shells.
If a person has any voluntary motion, of hands or head for example, they can learn to choose between things. That’s communication and agency right there. If they can show pleasure and displeasure through vocalizations or facial expressions, they can show their preferences, and that also offers a way to give them choices.
What might the man described above be able to enjoy? What experiences might make his days more interesting and varied? Here are my suggestions:
- Motion. Could he spend time in a modified swing or hammock, or lie on a waterbed or trampoline? Might he enjoy riding in a car, feeling the vibration of the engine, the vestibular input of turns and hills, the pressure of wind rushing by an open window?
- Scents. He could be offered different things to smell, be in a room with flowers or cedar wood or scented candles or an essential-oil diffuser. He might show a preference for the smell of lavender or citrus, or who knows what. Engine oil? Bubble gum? Pine forest? Popcorn?
- Tastes. Even if his diet is very restricted for medical reasons, or he can’t chew and swallow, you could probably place tiny amounts of different flavored things on his tongue. Broths, juices, a popsicle or lollipop? Almond extract? Honey? Vegemite?
- Touching things. So many options here. If he can move his hands, he might enjoy running them over different textures. He could put his hands into a container of rice or goo. He might show a preference for rough or silky blankets. How about water? He might enjoy being in a bath or shower (there are supportive devices that would allow him to do this safely). He might like the feel of soap.
- Being touched. Such an important and so often overlooked human need! Does his family visit to hug and cuddle him, do they rest his head against their chest so he can feel their heartbeat and warmth and breath? Does he ever get massages? Could he choose a scented lotion or oil that someone would rub into his skin? How about having his skin brushed (something some of my clients enjoy) or gently exfoliated?
- Music. Even people who are completely deaf report enjoying music by feeling the vibrations, such as from a bass-heavy speaker. How about an electronic toy that buzzes or pulses in a rhythmic way?
- The natural world. How about the simple experience of being taken outdoors in a wheelchair? He could feel the wind caress his face, smell the complex scents of life, bask in sunlight, perhaps touch rain or snow. Just for changes in smell alone, he might enjoy a trip to a farm, a mall, a zoo, or a botanical garden.
- An animal companion. Has he ever had a pet? Has he felt soft fur, a dog’s wet nose and sloppy kisses, the vibration of a purring cat on his lap?
Can we really believe there’s nothing he can get out of life?
The first step, though, is that we need a change in mindset. We need to remember, from the start, that people with severe disabilities are still people. That they’ll have likes and dislikes, that they can learn, and most of all, that what we see of their behavior reflects so little of what is going on inside their minds. We need to challenge our basic assumptions.
It doesn’t come naturally to us to think this way. I remember my first time in a special education classroom, seeing a child slumped in a wheelchair, head lolling from side to side, having drool and spit-up suctioned from their mouth regularly to keep them from choking. I’m not used to seeing a person look like that– most of us aren’t. Our brain doesn’t automatically register that this entity is a thinking being like ourselves. But I’ve also seen an adult with that same level of disability produce thought-provoking speech by moving their hand across a screen, and it reminded me that I have no idea what kind of mind was inside that child in the classroom.
Perhaps we should all be required to spend more time around such people, so that our brains get used to remembering that they are, in fact, people.
But back to the question I mentioned at the beginning. Are there people whose level of disability places them into a category beyond hope? And to answer that question, I have to tell you about my own defining moment.
It’s easy to think the answer depends on the answers to some other questions. What about that theoretical person I mentioned who has no neocortex, no possibility of conscious thought? Is it our mind that makes us human? Our genes? A thing called a soul that some people believe we have and others don’t?
But eventually I realized this line of questioning was the wrong approach entirely. It’s not a matter of finding that dividing line between human and not human, worthwhile and hopeless, valuable and expendable. That question is unanswerable. It brings to mind people’s beliefs about killing.
Generally speaking, we agree that killing is wrong. But people’s interpretations of that moral rule vary. Some people would rather be killed than kill another, while others feel that it’s acceptable to kill in self-defense. Some people would kill to defend a child but not to save their own life. Some people believe that killing is sometimes a necessary evil, as in war or the execution of a dangerously violent person. Some people think the rule against killing means that they are morally obliged to actively prevent deaths if they can. There is no way to say that any of these beliefs is superior to another, and no amount of discussion that will ever make us all agree.
We’re never all going to agree about the questions above, either.
My defining moment came during a presentation given to a student medical ethics club. Our speaker was a man who advocates for people to arrange their deaths in advance, in case they become incapacitated. This went beyond the basics of what we should all do in terms of making our wishes known about life support, organ donation, and so forth.
Our speaker suggested that ending one’s life in a state of dementia was a horrible experience that no one should have to go through. However, dementia doesn’t necessarily result in physical illness, so it’s not as simple as asking to be taken off life support or not resuscitated. Instead, you would need to request ahead of time that your caregivers stop giving you food and water when you got to the point where you lacked the mental capacity to argue for your own survival.
I won’t go into my arguments against this idea. The suggestion itself wasn’t my defining moment. That came when our speaker went over all the reasons why we might prefer to die before ending up needing full-time care. And one point he offered in support of his position was that a study had found that some distressingly large percentage of people with dementia in nursing homes weren’t being given adequate pain medications.
Let me say it again: a study found that lots of people in nursing homes were in pain and not being given enough pain killers. And his solution to this problem was that you should make sure you die before you end up being one of those people.
It’s as though someone did a study showing that life in prison was intolerably cruel, and your response was that we should just execute anyone with a life sentence so they wouldn’t suffer. Rather than, oh, say, reforming the prison system. Sometimes the mere presence of a certain option is enough to change our approach to the entire problem.
And therein lies the risk of asking whether any life is too disabled to be worth living. The minute you allow yourself to think that way, you’ve missed the point. You get hung up wondering where that dividing line is rather than seeking a solution that would make it moot. You give yourself the moral luxury of assuming that there are people for whom nothing can be done, and as a result you think less about what it might be possible to do for them. You let yourself off the hook for solving the problem of how to make life better for everyone, no matter how disabled. And because you believe that death is an acceptable option for some people, you won’t devote every possible effort to making those deaths unnecessary.
They say that necessity is the mother of invention. But who decides what’s truly necessary?
So let’s imagine for a moment that we simply refuse to consider death an option. We’re not going to let anyone die, no matter how much they are suffering. But we do want to reduce suffering– that’s what brought up the question in the first place. So now, our only option is to focus entirely on how to improve these people’s situations.
Are we really putting as many resources as possible into research for better pain medications? How about other approaches to pain management? It’s been nearly 10 years since I kept a close eye on neurological research news, but even back then, we were talking about directly implanting electrodes into people’s brains for various reasons. Deep Brain Stimulation was shown to mitigate the symptoms of Parkinson’s disease, essentially working as a neural pacemaker. Why aren’t we looking into direct brain stimulation to treat pain? (Probably somebody is. But I’d like to see the media following that research as avidly as they follow research on cancer). Pain is a tricky thing to pin down, neurologically speaking. I’m not saying this would be easy. But we’ve got billionaires sending people to space as a testament to just how much you can accomplish when you throw enough money at a problem.
How about virtual reality experiences for people who can’t get to those experiences any other way? How about direct brain stimulation to create pleasant sensations? Of course this idea conjures up sci-fi images of people addicted to the wire that sends jolts of pleasure into their head, wasting away as they ignore all else. But that’s a bit like assuming opiates can’t be used for anything except making heroin. What if we regularly delivered tiny little nudges to the brain’s “pleasure center,” the equivalent of an experience that makes you smile rather than the kind of rush that creates addicts and burns out entire mental “circuits”?
And if we devoted ourselves to developing medications and technologies to reduce the suffering of the severely disabled, think how many other people would benefit as a result. We’d be looking at reducing chronic pain conditions, helping cancer patients, revolutionizing hospice care. Transcranial Magnetic Stimulation is already showing promise as a treatment for severe depression — could more targeted neural intervention help people overcome PTSD and other mental illnesses?
What if we passed laws ensuring that people with severe disabilities can be cared for at home and offered experiences tailored to their needs? What if we develop new ways to teach and raise and support children with serious disabilities? Brain implants are starting to allow paralyzed people to move muscles that are no longer connected to their brains physically. Could they allow someone with limited senses and mobility to communicate with us? Or help us communicate with them?
I’m sure there are many other possible approaches to this problem, many ideas I haven’t thought of. I bet there are a lot of avenues we haven’t yet explored. We can seek those solutions, if we truly put our minds to it. But we won’t try unless we believe we have no other option.
So no, there is no life so disabled that it is not worth living, no situation so bad that it cannot be improved upon, no suffering beyond the possibility of help. There can’t be. We must not allow it.