Monday, August 19, 2013

"I Can't Die Here. It's Too Ugly."

Award-winning architect Michael Graves
To designer and architect Michael Graves, paralyzed from a rare virus and in a wheelchair since 2003, the ultimate indignity came one day while he was a patient in a top-ranked hospital: “I was in a Hoyer Lift.” (a body sling mounted to a metal structure, used to help lift and move a patient). “The nurse was moving me from the bed to the chair, when another nurse came to the door and called to her friend, ‘Come on, it’s time for our break.’ After initially saying that she had to finish moving me first, my nurse changed her mind…and went on break with her colleague. So she left me dangling in the sling, midway between the bed and chair.”

For a moment hearing this, words escaped me. “What did you do?” I finally asked, horrified.

“My room was close enough to the nurses’ station that I was able to call out and eventually get somebody to come and help me.”

Yikes. I can’t imagine the indignity to any human being…let alone the stark contrast in respect this represented for an internationally-renowned captain of industry. But for Graves, it was only one of many moments that would fuel the next chapter he’d embark on as a designer.

During long weeks in eight rehabs and hospitals following his sudden paralysis, Graves was appalled to find patient rooms too tiny to accommodate his wheelchair; faucets and plugs out of reach; and d├ęcor (a euphemism) that prompted him to blurt “I can’t die here; it’s too ugly.” (Though the lobbies and public spaces of these nationally ranked facilities, he says, were gorgeously outfitted in granite and marble).

I interviewed Graves some months ago, for my book on how we need more simplicity and common sense in the way health care is delivered to patients. It makes me nuts that in many ways, the system we have is too often just the opposite – a gnarly, fractured behemoth, its growth fueled and shaped by the whims and widgets of hospitals and insurers, not the human needs of the vulnerable patient around whom the entire enterprise revolves. (Hey, hard to blame these institutions; they’re just playing by the rules they’re given). With reforms working their way through the system, things are slowly getting better. Slowly. (Did I mention “slowly”?)

Who better to help us figure out the intersection of health care and design—design meaning common sense, frictionless user interface, form following function-- than Michael Graves? With oodles of design awards, honorary degrees, a bunch of medals, plus libraries, resorts and company headquarters to his credit, (think the Swan and Dolphin Hotels at DisneyWorld, and scores of everyday products at Target Stores), he’s arguably the dean emeritus of how design can empower—or dis-empower—a patient. How exciting to tap the wealth of wisdom that rides around in that lovely mind.

When I finally met Graves and his team at their Princeton, NJ headquarters this summer,
Me with the amazing Michael Graves!
I was struck by the architect’s genial spirit, his warmth and kindness, and the absence of any caustic edge one might (undersandably) expect from his experiences. Hard to miss: the genuine affection he and his team feel for each other. (Several have been with him 30+ years).
I toured the building, saw mock-ups of buildings and complexes the Graves team was working on (the practice continues to churn out world-class projects), and finally met graphic designer Dounia Loupier (who, with Graves, designed the cover of my book). The team showed me some of the cool “life assistance tools” the firm has launched: a hospital bed table with a detachable bin for personal possessions, with drawer accessible from any angle; a redesigned wheelchair that’s safer for transport workers, more comfortable for patients and more cost-effective for hospitals. (Below is some video of Ben Wintner describing the Graves-redesigned hospital chair). These are all things you might want “when your day comes”.
 Getting back to his humiliating Hoyer Lift story, where he was left dangling in mid-air: Graves tells it for one reason: to illustrate how important it is for a hospital to have a culture of care—and how egregious harm to body and spirit can occur when it’s absent. “These workers aren’t bad people. I don’t blame them. They may have been trained medically, but they haven’t been trained in any culture of care.” Graves points to how other companies work from the top down to create this unified approach. “Apple, for instance, has its VP of sales interview and train managers, who in turn train secondary managers, who in turn interview and train every single worker and helper, so the interaction with the customer is consistently up to the same high standard. That’s what it takes.” Absent this level of attention, Graves says, Apple might lose a customer’s business. In a hospital, the loss can be much worse.

Graves’ better designs for hospital furniture, shower chairs, and canes that zip into satchels offer a glimpse into a future where every person’s dignity and control is honored as a birthright, regardless of physical limitation. However, Graves’ crusade to put such tools in others’ hands is tempered by realism. While Stryker has partnered with his firm to bring many of these products to market, for the most part you’ll have to go through a distributor and order them online. Like crutches, walkers, and other mobility tools, if you can find them at retail stores at all, it will most likely be in a separate durable medical equipment (DME) store. (A notable exception is pharmacy chain CVS, which operates twenty-eight CVS “Home Health” locations around the country.)

The obvious question: what about Target stores, where Graves-designed products became iconic of “good design accessible to all”? After fifteen years designing for Target, Graves’ relationship with the giant retailer came to an end in early 2012. “I tried like crazy to get them to sell the new mobility designs,” he told me. “They said they’d do it when Walmart does it. And Walmart’s not gonna do it until customers ask for it.”

Graves hopes for help from a group of customers “that’s the right demographic and the right age: ‘sandwich moms’.” These are moms assisting aging parents while raising their own families. According to Consumerist.com research conducted in 2009, “There’s a huge unmet need for products and services that help care for aging parents now and in the future.”

Another new dynamic entering the landscape: soldiers returning from combat in Iraq and Afghanistan. With advances in treating grievous injuries, many more troops are coming home alive—and facing new challenges. “Some twenty thousand of these kids are paralyzed from the waist or chest down,” says Graves. “They’re not only trying to rebuild their lives, but a lot of them can’t find jobs. Many of them are re-upping in the service.” Graves’ firm was commissioned to help design model homes to accommodate these vets; the Wounded Warrior Homes, at the Army’s Fort Belvoir in Virginia, served as prototypes for nineteen similar homes now under construction. The intention is to create “living laboratories” where occupants can test and give feedback on new features. “You walk into the home and have no idea it’s specifically designed for mobility issues. Everything is integrated and elegant,” says Graves.

Is it possible these wounded warriors might extend their heroism beyond the theater of battle by inspiring a more mainstream awareness of the need for universal design? “All of us will need some adaptations in our lifetime,” says Graves. “Our hope is this work for wounded warriors will spark further movement within the Department of Defense, and that the trend will carry over to elderly housing, and housing for all of us.”

It seems to come down to consciousness—something Graves promotes by having new hires at his firm spend time in a wheelchair. As for the world at large, Graves’ story about how he was left dangling in midair in a Hoyer lift, as wrong as it was on every level, is also indicative of the far more insidious harm that occurs when we devalue a person’s basic human dignity—or shrug when it happens. Bring up the subject of indignities suffered by patients, and see what stories come up—like a grown woman sobbing for a tissue at 3 a.m. because the bed table with the tissue box has been moved out of reach (and no one’s answering the call button), or a grandmother, asking to be taken to the bathroom, being told, “It’s shift change. If you can’t wait, you’re going to have to go in the bed.” These humiliations, both large and small, degrade not just the person experiencing them; they diminish all of us.
--Excerpted from Pat Mastors’ book, Design To Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives, with a Foreword by Michael Graves.  
Watch Ben Wintner of Michael Graves Design Group Demonstrating a redesigned patient-friendly chair.