Time seems to stop one recent November day, as a small but conspicuous band of disability advocates passes through security at the Hart Senate Office Building in Washington, D.C.

As a long line of able-bodied people backs up behind them, the advocates break down wheelchairs, crutches and feeding tube and communication devices to feed through the X-ray machines, and then reassemble them on the other side. It is not their first challenge of the day, by far. Those waiting watch quietly as these people, who seem to know a lot about perseverance, rally their bodies and equipment to get on with their day’s mission.

They are here to talk to Maryland’s Congressional delegation about the importance of Medicaid for people with disabilities and they’re feeling some urgency: the Congressional “Super Committee” has a fast-approaching deadline to reach a budget deal and they want to make sure they’re not left out. (They’ll later find out the Super-committee would dissolve with no deal reached – a super-Super Failure.)

I’ve joined this group of self-advocates, parent advocates, and representatives from the Arc Baltimore, to make sure Congressional aides convey to their bosses what a lifeline Medicaid is for people with disabilities – how cuts would affect them in dire ways. We’re here to show our faces, mostly, because everyone on any side of the issue assumes the obvious: Disability is hard, and entitlement programs are essential. But who really understands? Looking into the faces of people impacted by disability, you begin to realize entitlement has become a misconstrued word.

Story Circle

Our numbers grow throughout the day and, dividing into smaller groups, we troop into each office and follow the same script: form a circle and take turns telling our stories, keeping them to two minutes or less.

The circle includes Melvin and Dennis, two men with intellectual disabilities and dazzling smiles, who are modestly and proudly dressed in suits and ties. Both men who, decades ago, would have been confined to an institution, are working jobs they love in an effort to support their independent living– all made possible by some basic help from Medicaid.  Melvin is engaged to be married. Without Medicaid, Melvin says, “I would probably be living on the streets.”

Another member of the circle is Will, a quietly perceptive college student with plans for a career in human resources. Not expected to survive at birth due to an errant gene, he uses a feeding tube to eat and a motorized wheelchair to act as his arms and legs. And yet, with the aid of some home nursing hours, he manages to live at college and keep a 4.0 GPA. Without Medicaid home support, Will would be lying bored in a nursing home, at a much greater expense to the government.

Kathleen is a pretty, vivacious young woman with long blond hair and Down Syndrome. “I have a disability and there are some things I don’t know and need a little help with,” she explains in her affable way. “My parents are senior citizens and they can’t take care of me anymore… Without Medicaid, I’m nothing,” she gasps, a look of heartfelt surprise on her face.

A Well-told Tale, An Awkward Silence

At the end of our circle is Ken, a 46-year-old man with cerebral palsy, who describes himself as “just a regular person trying to live my life to the best of my abilities.” He commands a motorized wheelchair called an Arrow Torque; a wand strapped to a headband activates his iPad with a nod of his head. The iPad speaks for him, since he cannot control his muscles for speaking. Or eating, walking, or using his hands.

Ken has the trim, steely, determined look of a triathlete, cerebral palsy-style. His daily routine requires no less discipline or courage than that of an athlete. His Arrow Torque is covered in grime and held together in several places with duct tape. Clearly, Ken has traveled a lot of miles in this chair. As the public policy coordinator for People on the Go, Ken manages grants, analyzes policy, serves on multiple statewide committees, advises state officials, testifies on bills, and gives presentations to students on disability issues, among other duties.

The aides we address are careful listeners. Yet every time, they try to wrap up the meeting before Ken’s turn to speak. Because they all assume Ken cannot speak.

Undaunted, Ken uses the pointer on his headset to play a recording of the story he has written. The unemotional delivery of the computer-generated voice can’t disguise his passion and wit.

“Medicaid provides vital home- and community-based services that allow people with disabilities to live independently in the community,” he says. “The thought of losing community services and going into an institutional setting frightens us!” His support hours are already inadequately funded, he points out: “I work from 9 to 4 every weekday, but I don’t eat lunch or go to the bathroom all day because I don’t have enough support hours to cover those minor activities.”

The silence that falls after that story is told feels unnatural, and words sound worse. The aides explain they and their Congress members are on our side, but add that these are scary times. They suggest we go talk to the other people – representatives and the general public – who don’t agree.

I Unravel, A Little

Thinking of my child with disabilities, I feel my energy wane. My comrades on this day are success stories, adults who have accessed services and are currently managing lives in the community. But decades of underfunding and cuts have led to prohibitive waiting lists in every state for support that many more people with disabilities need in order to live decent lives.

My child, so delightful and so challenging, brings me to my knees, and his future looks impossible. Each time we regroup to tell our stories, I unravel a little. I lose words, stumble, and leave parts out. I begin to yawn and lose focus. As the day wears on, I seesaw between sleepiness, sorrow, anger, and hunger.

Political change at the federal level is immutable, I think. It takes an extra dose of faith to show up and face that politely.

From A Big, Mad Inspiration: Awe and Some Relief

Losing our way in the huge Hart Senate building, a few of us wander into the white marble abyss of a nine story atrium, where we find ourselves at the foot of an astonishing biomorphic sculpture by Alexander Calder.

Thirty-six tons of black steel mountains rising 51 feet high with two tons of black aluminum clouds dangling above, it feels like a warning from God – or at least from Calder – that there are stronger forces in nature than in people and government. Forces with the power to transform space.

I later learn this is Calder’s last work and probably his most impressive. After making a final adjustment to the model – tweaking the clouds with a pair of pliers – the artist went home and died.

It then took 10 years and private (not public) funds to build the thing, thanks to persistent efforts by New Jersey Senator Nicholas Brady, who felt it was “the right work for the right place at the right time.” The clouds were designed to rotate at 140 speeds in random patterns, but they ceased to move in 1992, a few years after installation. A complicated feat of engineering tried to reanimate them 10 years later, but they are still on this day, and yet no less imposing.

This sculpture and its unlikely placement remind me of the two-story-high statue of Jesus in the lobby of the Johns Hopkins Hospital.

If you’ve spent time there witnessing the pain of sick children and the suffering of their families, you come to know the heft of that Jesus. All of the medical geniuses who enter and leave the building pass by him. And the patients and their families, when they are failed by medicine – or if they get a reprieve – tearfully lay flowers at the foot of the immobile statue. Because the buck stops there.

So standing at the base of these mountains and clouds, I feel awe and some relief. The big, mad inspiration that put this monument inside a government building seems to suggest that not all power lies within the small victories and defeats of the politicians that pass through this atrium. It is possible for perspective to come in surprising ways. For this day at least, I can lay my worries at the foot of Calder’s “Mountains and Clouds.”