3 Things People with Intellectual Disabilities Know about Success that You Don’t: 8 Minute Read
I slept this week in a Slovenian home with five people with intellectual disabilities, several volunteers and assistants, and a Catholic priest. The organization, L’Arche (1), began in 1964 when its founder, Jean Vanier, decided to invite two men with intellectual disabilities to live with him.
Here are three things people with intellectual disabilities taught me about success.
1) Values Are More Important than Results.
Metod has an intellectually disability and blindness. Upon my arrival, after meeting several of the assistants and staff members, I sat down for a quick coffee. In the adjacent room on the couch was a woman on her back in the fetal position, holding her head in her hands. One of the assistants pushed Metod towards the living room. He walked by the woman and felt his way to the couch, abruptly sat down, beat his chest, and made a loud and abrupt yell, “Yea Yea!” He then incessantly rocked back and forth, beating his chest, while pulling a remote control out of his pocket, feeling it, banging it on the cushion he sat on, and putting it back in his pocket.
Later that day at mass (I spent half of the Easter holiday in mass), Mateja led Metod to his seat. He used his arms like antenna, reaching out to see who sat to his left, then to his right. He kept reaching out in abrupt movements towards Mateja, gracing her body. She would grab his wrists, lower his arms, and push them back towards him.
The next time I saw Metod was three days later, at workshop. He came out of the bathroom as I was walking in. Recognizing my voice, he came up and grabbed me, forcefully hugged me close, and buried his head into my chest. He took his remote control out of his pocket and put it in the palm of my hand, caressing my palm and the remote. Then he put the remote back in his pocket, and, making abrupt noises, turned to the wall and used his hands to guide himself down the hall.
“If he lets you hold his remote control it means he likes you,” Bostjan told me.
It dawned on me, watching Metod. What trust: He spends his entire life letting others guide him. What courage: He spends his entire life wandering through the dark, unafraid to move forward (I later learned that his parents and sister are also blind). What love: We hadn’t had a single interaction before he hugged me. He recognized my voice from a few days earlier and accepted me.
What joy: Metod does nothing half hearted. He goes after everything. One morning we all circled up to stretch. Mateja instructed us to tilt our necks forward and backwards, which we all did, except for Metod. He threw his entire body into it, repeatedly coming as close as six inches from slamming his head against the payment.
If success is about results, then Metod is a failure. If success is about values like trust, courage, love, and joy, then Metod is a winner.
2) It’s More Important (and Harder) to Grow You than Your Resume.
“In the world people wear masks. But here you can not hide.” says Kika (2), one of the assistants at L’Arche. “Who you really are will come out. Here you learn your wounds, limits, and walls because when things happen they go up or come down.”
When I asked Kika for an example, she told me about Marinka, the woman I had seen the first day on her back in the fetal position.
“Her illness causes her so much pain and suffering. And yet, every day at some point she will exclaim something about how wonderful her life is, a good song, or a thought of her mom or nephew, or a prayer or a cup of coffee. One time Marinka was in agony for three days, crying and sobbing and moaning. I tried everything to help her feel better. I read to her, I sat with her, I hugged her, and nothing worked.
As we sat there on the third day I said, ‘Marinka, in my room I have a bag of chips. Would you like some?’ And that was all it took. ‘Chips!’ Marinka yelled.
I brought a towel and laid them out and she cherished them one by one, and when I tried to take one she said, ‘No! They are mine.’”
For Kika, that Marinka’s life had so much pain and yet she could find joy held a mirror up to her own face, showing her how in spite of having a great job and a home and a retirement account, she had much to learn about gratitude.
Tanya, who slept in the room to my right, never quit trying to speak to me in Slovenian the entire week. After telling her many times that I only spoke English, I began to sing her name to the tune I’d heard at mass, “Holy, Holy, Holy, Lord God Almighty!” in response to her Slovenian.
She loved this, so much so that one day when I came home she had left two pictures she drew for me on my bed. I began to point to my door in an effort to ask for tape to hang them. I went out with friends, and when I got home just before midnight, Tanya was waiting up for me. She had drawn a third picture and put it on my door.
“Relationship is their deepest call,” Kika continued. “They love you the same as the first time they met you. They don’t want you to do anything FOR them other than to be WITH them. In life we are so bombarded by worldly necessities, and yet they go straight to the core of your heart and show you that the rest is bull crap.”
Experiencing this love, Tanya’s drawings, Ado’s random back massages, and Matod’s offering his most precious possession for me to touch and hold, caused me pain because my accomplishments and resume were worth nothing to them, and yet that’s exactly what I usually offer to the world in hopes of receiving love. Living in a world with no promotions, degrees, bank accounts, compliments or social media likes is a challenging one indeed, because it requires that we show up as ourselves, naked, without masks. It requires that we grow and not our resume. (3)
3) Success Can’t Be Counted or Measured.
Bogo says he dreams about elephants every night. He also loves to knit. He won’t do woodwork or garden or paint pictures. He only wants to knit.
Yesterday I sat next to Bogo to knit. I’d spent the day working in the garden, making hearts in the woodshed, and now knitting. I'd been accomplishing highly therapeutic, joy filled, and fun work, but hardly worth counting or measuring, at least from my world view. My last shred of self-fabricated dignity was finishing my knitting: I could at least ascribe value by completing it. When it became apparent I wouldn’t have enough time that day, the workshop leader said to me, “Derek, you do not need to worry if you finish today. It can take Bogo weeks to do a single one.”
In a society that ascribes worth and value to production it can count and measure, it’s hard to see how anything but a cruel God exists, if he or she exists at all, who would create a human who is disabled and incapable of production worth merit.
I tolerate people with intellectual disabilities. I see their parents at fast food restaurants and church and sporting events and think, “Their entire life has been altered by this circumstance. I’m glad that’s not me.” I’ll invite them to my birthday parties or spend a week with them or celebrate with them at annual banquets in their honor, but too often it’s some badge to show I am kind—just another achievement to be counted or measured.
I’m too blind to see that based on a different set of values they may be far more efficient and successful than I. “A society based on the Darwinian ‘survival of the fittest,’” Jean Vanier says in Becoming Human, “can paralyze the development of the heart […] those we most often exclude from the normal life of society, people with disabilities, have profound lessons to teach us. When we do include them, they add richly to our lives and add immensely to our world" (pg. 51 and 45).
If God does exist and created people with intellectual disabilities, then he or she must stand in opposition to those like me, who ascribe value based entirely on what can be counted or measured, as well as societies that tolerate those with intellectual disabilities without creating room for their human gifts to be valued.
It’s too threatening to my world view to consider a success that can’t be counted and measured and earned, because if I fully grasped that success, I would start a new life. I would try to convince others to start a new life, too. “The bad news is, we are all sick,” I would say. “But the good news is, there is medicine for our sickness.” I worry if I did, others might keep me at a distance, too.
It’s one thing to dash in to help those with disabilities for a week and leave. It’s quite another to live a life of constant contact—even though I know now that precisely is the medicine my soul needs— because it reminds me daily how based on my definition of success it is I, and not they, who is disabled.
So, instead, I war in my heart. Yesterday, around 4:45 PM after workshop, I lay on the bed in my room to pray and meditate and ask God for help in confronting my demons of success.
I was somewhere between prayer, meditation, and napping, when I sensed a presence. Then I heard a voice. ”Vecerja!” I was deep enough that I’d forgotten where I was. “I must be back in New York. Somebody is breaking in to kill me,” I thought to myself. I played dead. “Vecerja!” “Vecerja!” The voice continued. It wasn’t English. “This must be the voice of God here to answer my deepest questions,” I concluded. “Vecerja!” “Vecerja!” With a heroic effort I lifted my head and turned over my shoulder. It was a man. He wore an oversized denim shirt and a purple necklace. His hair was disheveled. He was hovering over me now, touching me on the shoulder. “Vecerja!” “Vecerja!”
A few minutes later I went upstairs to find everyone at the table. They laughed at me. Bogo had come into my room to tell me that it was time for dinner.
I said I needed to wash my face. But that was only half true; I wanted to keep others from seeing me tear up. If God exists, then he answered my prayer by walking into my room, touching me on the shoulder, staring me in the eyes, and inviting me to dinner with him. Back in my room, washing my face, I had to ask this question, “But will I come?”
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1) The name means ark, as in Noah’s ark. At L'Arche they believe those with disabilities can save the world, rescuing us from the shackles of our endless needs for power.
2) The assistants at L’Arche are all like little buddhas and therapists. They constantly speak of our wounds and pain and suffering and how we can heal. “The opposite of love is fear,” they say. “We have to express our sorrows,” they insist.
“Many of us go through our entire lives believing lies that are really illusions,” Kika told me. “It wasn’t until I came down with meningitis and wasn’t able to do anything for myself for six months that I began to understand. Until that point I thought what I did and the position I held and my responsibilities really mattered. In those six months, when I could do nothing for myself, the community took care of me. In that time I realized that it doesn’t matter what we do—it only matters that we do it with love.”
Irene and Tanya rode with Kika and I to the airport. Irene and Tanya gave me hugs, and then as if to reinforce Kika’s lesson, Irene decided to give me a kiss. We can achieve whatever we want to achieve, or not achieve, but it can’t matter more than Irene’s kiss.
3) I grew this past week in small ways, like the outburst of laughter that ended with core members and assistants flinging pillows at each other across the living room, reminding me of how playful at heart I am when my mask is off.