I drive me nuts!

Yea, you read that right. I do. I drive me nuts.

As many of you know, I’m a bit of a wordsmith. I’ve long believed that the words we choose matter. I’ve also long believed that the English language offers us a vast array of words to use, if we were only to allow ourselves their use.

We have a lot of word choices.

We have a cornucopia of word choices. Or, we have myriad word choices.

The former is clear, arguably simpler. But, the latter options capture the sentiment with so much more oomph and pizazz.

I’d love to be perfectly okay with the simpler options. As I speak and write (I do a lot of both), I seemingly am always in search of a more apt word choice. As I do and as I seek always for more descriptive words, I must say, I drive me nuts. “Oy vey, David,” I say to myself. “Quit with the five dollar words! Genug, already!” (Ah yes, in addition to searching for bigger, bolder, and more descriptive English words, there’s the inevitable sprinkling of Yiddish, Hebrew, French and Spanish…I’m hopeless!)

Recently, I was chatting with a group of intellectual and/or developmental disability (IDD) system leaders from across the country. The topic was best practices in IDD supports, and I contrasted the following word pairs to provoke the discussion.

Careers vs. jobs.

Joy vs. recreation.

Interdependence vs. independence.

The second part of these dyads are what I consider to be IDD lexicon, tried and true words that have become the unfortunate lexicon for IDD system purveyors and have become esoteric. We know what the words mean in the context of IDD supports. We have, in my estimation, used them so frequently for so long that as a practical matter, they’re vacuous lingo, neither inspiring nor especially aspirational.

When is the last time we sat and chatted with a young person who happens to have an IDD about their dream career? Not about a job, but about a career. A job is a transaction. We get jobs, we lose jobs. Transactions. Virtually anyone can get a job. But, those of us who have built a career would struggle to separate the myriad expressions of that career from their contribution to our quality of life. Getting a job is a tick-box exercise for the vast, overwhelming majority of people with IDD. We’ve not asked folks with IDD when they’re kids about what they dream of becoming someday. Our school-to-life transition programs don’t focus on preparing folks for entry into careers…even while they do a lot of work in finding people jobs. And, our so-called ‘supported employment’ programs across the country, which have effectively been in place for 30+ years continue to produce few lasting outcomes, with unemployment rates among working age adults long hovering at 70-80%. Why? Because supported employment is about a JOB. It is not about a career. Our vocational rehabilitation system incentivizes getting a job, irrespective of whether or not the job is a building block in a career in a field or discipline of the person’s dreams. We fail miserably to invest in the person’s potential, to fan the flames of her/his dreams, and to offer anything close to suitable resources (read: post-secondary education, for example) that prepare her/him for a dream career.

Why? Because we focus on the job. Tick box. Transaction. David got a job. Check. Aren’t we fabulous?!

Next, let us take on joy. Yes, joy. I’ve challenged folks with whom I work at Makom to stop thinking about “recreational activities.” Yech. Even typing the words leaves me cold. I recently was hanging out with a group of about 40 of our DSPs, walking through the none-too-pleasant history of IDD in the US. Against the shocking, stomach-churning historical backdrop of that history, we got to talking about how people have been long denied the fullest expressions of who they are and how they choose to engage their communities. I have taken to reminding all of us that our commitment to self-determination means that people get to choose how they live, learn, work, play and pray. Seems simple enough. We all have this right.

When is the last time you—yes, you—were asked about what “recreational activities” you’d like to do at the weekend? In my 58 years on the planet, I can’t say that I’ve ever once been asked such a question, or even thought about what I do that brings joy and laughter and fun to my life as “recreational activities.” For example, Sheila and I spent 17 days this Summer literally chasing the latest iteration of the Grateful Dead at nine shows across the country. No one asked us, “what recreational activities did you do this Summer?” Or, “oooh, what interesting recreation you guys enjoy!” Instead, we get asked a lot, “did you love it?” and “was it fun?” We chose our love of live music (and the inestimable music of the Grateful Dead!) as a guide to our Summer fun.

We tend not to have this sort of dialogue with people with IDD. Instead, we contrive recreational activities so that we can say we did. I recently was chatting with a person Makom supports, and without giving it any thought, I asked her, “what brings you joy?” She literally wasn’t sure how to answer, which was obvious from her puzzled expression. I reframed the question: “What do you do for fun?” Her answer offered me a glimpse into what brings her joy, what makes her laugh, what she loves to do. I wonder how her answer might have been different if the focus of my question, in the finest tradition of tired, overused verbiage with which she has likely for years been bombarded, had been “so, what recreational activities do you like to do?”

My favorite dyad of the bunch? Interdependence vs. Independence.

I’ve come to a place in my life’s journey where I don’t believe that independence is an actual thing. It’s an empty, meaningless word. Think about it. Who among us is independent? Go on, contemplate it. I’ll wait…

The answer? None of us.

I depend on Sheila and my two, amazing adult sons, Jakob and Daniel, for more emotional support than I could possibly calculate. When I’m feeling down, or I’m under the weather, or I’m just plain ol’ unpleasant and cranky, the love and seemingly endless support from these three humans (plus Duncan the dog!) is a lifesaving salve. Sometimes, it’s my Dad, or it’s Sheila’s family. Sometimes it’s friends who persist in loving me despite myself and who, as such, throw me an emotional lifeline.

I depend on farmers and ranchers to eat. I lack the skills to hunt or gather my own sustenance, so I am dependent on the skills and resources of complete strangers.

I depend on the bank for the roof under which I live.

I depend on my coworkers and Board members, the people we support, families, partners, our friends and colleagues at the State, and the whole Makom community, without whom I have exactly zero chance of being a successful leader for Makom.

I occasionally depend on neighbors to watch the house or collect the mail. I depend on my tax preparer to keep me out of hot water with the IRS. I depend on our veterinarian to keep Duncan healthy. The list is endless.

And yet, we’ve sold the folly of independence as the proverbial brass ring for people with IDD for decades. What’s far worse and damning in my humble estimation, we’ve held people with IDD to a wildly different standard—one that no one is capable of meeting—than we have folks without IDD.

It’s poppycock. Instead, we are working hard to grasp the profound elegance of interdependence. It’s relationships, it’s social capital, it’s the full-on recognition and embrace that all of us rely on others of us, that we ALL depend on the presence of great supports from great supporters in our lives, and that ALL of us need others to live lives of abundance and joy. And that, after all, is what life is all about.

It’s true, I drive myself nuts. But, it turns out my mother (z”l) was right—words really do matter. The words we choose can convey a world of full color and beauty, a world of endless potential, the greatness and inspiration of human achievement, of aspiration and opportunity without limit. Here at Makom, we’re embracing new words that orient us to the exquisite fullness of human potential. Try it out. I expect you’ll be glad you did.