As a speech therapist working in a rehabilitation hospital, I change a lot of adult diapers.
Most of my patients are adjusting to a new life with disabilities. One day they’re self-sufficient, perhaps even working full time. Then comes the incident (a stroke, a car crash, a fall, a heart attack, lack of oxygen, etc.). Now they’re dependent on others even to go to the bathroom. And if they’re on my caseload, they also have difficulty communicating, remembering, thinking, and/or swallowing. It’s a rough transition. Some of my patients make a pretty good recovery, regaining their independence step by step. Others will never be truly self-sufficient again and will always rely on the support of caregivers.
Never a Burden
Among my patients who are aware of their new disabilities, a common worry expressed to me is this: “I don’t want to be a burden to my family.”
It’s a legitimate concern! None of us wants to feel that we cause more trouble than help for the ones we love.
The response I am tempted to give is this: “You’ve earned their care. You took care of your family long enough; now it’s your turn.” And while that may be true for some patients, there’s a problem with this response. Listen carefully: “You’ve earned this.” Can love and respect ever be earned?
It’s easy to overlook the problems with conditional love and respect when the conditions are met. But despite the messages we absorb from society, we cannot earn love, respect, or dignity. Our dignity is innate and cannot be augmented or diminished by our abilities. Our dignity comes from the One who made us.
Conditions, Conditions, Conditions
I believe I should be able to keep our apartment immaculately clean. I believe I should gain weight to achieve the perfect BMI. I believe I should be able to function on 7 hours of sleep. I believe I should never ever make mistakes at work. I believe I should never offend anyone with my writing. The list goes on and on and on.
Do you feel the pressure, too? Our society is obsessed with optimization. We are taught we must always be working to maximize our positive impact.
Fill in this sentence: I believe I should ______________.
Fill it in as many times as you need to. I encourage you to stop reading for a moment and write down a list of your expectations for yourself.
Now check off all of the expectations you meet.
Now crumple up your list and throw it in the garbage.
Your dignity is not dependent on any of those conditions. Not a single one.
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Dignity is Innate
Our abilities do not define our dignity.
One of my favorite authors, Katherine Wolf, suffered a stroke at age 26. She is severely disabled to this day. She often writes about transitioning into a life with disabilities. In the book Hope Heals, Wolf wrote: “I slowly began to understand that I had survived a brain bleed and that I was this ‘slow-motion miracle girl.’ […] I also eventually learned I could no longer walk, eat, hear out of my right ear, see one image at a time, speak clearly, or use my right arm or hand. […] The whole miracle thing really stung because the ‘miracle’ had left me unable to live normally.”
But Wolf’s story does not end there. Later in Hope Heals, Wolf wrote about a beautiful message the Lord spoke to her heart: “Katherine, you are not a mistake. I DON’T MAKE MISTAKES. […] Remember that you were fearfully and wonderfully made in your mother’s womb, and that is when the AVM formed in your brain.”
Every time I read Psalm 139, I think of Wolf’s words.
We are temples of the Holy Spirit. There is nothing we can do (or fail to do) that changes our dignity one way or another. A newly conceived single-celled child is just as dignified as a 100-year-old grandmother with dementia. A person on death row is just as dignified as a Nobel laureate. A person with Down syndrome is just as dignified as a famous poet. You are as dignified as a person experiencing homelessness and the Queen of England.
Katherine Wolf’s dignity did not change with her stroke. And neither does our dignity change. If we succeed or fail, if we are able or unable to accomplish something—our dignity does not change.
This is radical.
Abilities Change But Our Dignity Does Not
In American society, we are taught that certain aspects of our experience are part of our identity. Patience, pro-activeness, eloquence, efficiency, strength, intelligence—to name a few.
What about when these traits are stripped away?
When the brain is affected by an injury or disease, our personalities are often affected directly. Patience may give way to impulsivity. Pro-activeness may give way to reduced initiative. Eloquence may give way to aphasia (difficulty using or understanding language). Efficiency may give way to impaired problem solving. Strength may give way to weakness. IQ can drop.
I’m not sure why American society conditions us to believe that we will retain our self-sufficiency throughout our lives. It seems absurd to me that our grandparents are expected to live with complete physical and financial independence. According to the CDC, two in five adults over age 65 have some sort of disability. The two most common types of disabilities, according to the same source, are mobility and cognition (read: intelligence).
For most patients, rehabilitation works well, but not always the way patients expect. Sometimes, rehabilitation is about working around the disability, compensating for new deficits with help from strategies, devices, and other people.
This may seem bleak, but remember: the dignity of the person is not affected by any of these new disabilities.
You are Worthy of Love
If I’ve learned anything from my work as a speech therapist, it is this: our dignity is not defined by our abilities. We are all worthy of love, respect, and care. Our dignity does not change, no matter what diagnoses or disabilities we may encounter.
So now when my patients tell me that they don’t want to be a burden to their families, I try to give a more compassionate message. I try not to tell them that they’ve earned this care and love. Because love is not earned. This new message is hard to swallow, but it’s so important to hear: “You are not defined by your self-sufficiency. You are worthy of love and care no matter what. Your abilities may have changed, but your dignity has not.”
Honestly, even though I don’t suffer from a disability at this point in my life, sometimes I need to hear that message too. Don’t you?
Kiki Hayden is a freelance writer and bilingual Speech Therapist living in Texas. She is a Byzantine Catholic. Check out how God has changed her life through speech therapy here.