WHY MAY 4th MATTERS: "FOUR DEAD IN O-HI-O"

It was 13 seconds that changed so many things. The way Americans viewed the Vietnam War. The reputation of a university. The lives of four families who would never be the same.

May 4, 2015 marks the 45^th anniversary of the Kent State shootings. When National Guardsmen -- called in to quell Vietnam War protesters -- shot their weapons in the air for 13 seconds, killing four students, and wounding nine others.

Americans were shocked and angered. Every parent of a college student froze in fear.

Artists, writers and musicians created works inspired by the tragedy. The Crosby, Stills, Nash and Young song, “Ohio”, still gives me chills.

I feel compelled to reflect on this milestone, to write about it because I went to Kent State University.

To be precise: I am a proud Kent State graduate.

I enrolled 12 years after the shootings, after the Vietnam War ended, when the go-go 1980s Reagan Era was picking up steam. When Levis bell bottoms had given way to designer straight-leg jeans. When hair got big instead of long and stringy. When classic rock faded and New Wave ruled.

So why does May 4^th matter to me?

Because Kent State matters to me. I got an outstanding education there. Just as importantly, Kent is where I learned to stop being apologetic and ashamed of my disability.

I hired my first personal caregiver at KSU. I befriended a lot of other folks with disabilities, many of whom used wheelchairs.

Kent is where I found my identity as a disabled woman and as a writer. It’s where I met my future husband.

All four years at KSU, I lived in the same dorm: Room 111, Prentice Hall. I say with equal parts humor and pride that I lived in Prentice Hall’s first-floor gimp ghetto. Prentice was the only girls’ dorm made disability accessible. If you were female and used a wheelchair, your address was going to be Prentice Hall.

Lots of kids with disabilities attend Kent State because of its welcoming, inclusive environment. Kent began making dorms, bathrooms and classrooms accessible and providing door-to-door paratransit service years before law mandated it. Many years before a lot of other schools realized they’d better start building ramps and buying vans with wheelchair lifts.

My dorm room window looked out onto the parking lot where Allison Krause, Jeffrey Miller, Sandra Scheuer and William Schroeder died. Four students who, like me, had come to get an education. By most accounts, two were simply walking to class. The other two were peaceably exercising their right to protest the war. Perhaps the way I might have demonstrated in favor of disability rights.

When I was a student, a candlelight vigil began at the stroke of midnight each May 4^th. The parking lot was cleared, and four spaces were roped off at precisely the locations where the students fell. Where students in 1970 felt their eyes burn from tear gas. Where they heard gunfire, and then the screams.

At each May 4^th commemoration I witnessed -- through the night and into the next day -- volunteers would take shifts standing silently in those spaces. In the gap between the bottom of my dorm room curtains and the window ledge, I’d watch the undulating beams of candlelight. I’d watch four silhouetted figures standing there, sending the message that those who died will never be forgotten.

I haven’t forgotten. I doubt I ever will.

WHEN DOES THE FREEDOM TRAIN ARRIVE?

America’s Bicentennial celebration on July 4, 1976 was something to behold.

President Gerald Ford presided over a televised pyrotechnic display in Washington, D.C. that seemed to set the celestial vault on fire. An international fleet of tall-masted sailing ships gathered in New York. A few folks even tossed bundles labeled “Gulf Oil” and “Exxon” into Boston Harbor during a tea party that took satiric political jabs at corporate power.

But the nation truly starting gearing up in 1975. Fire hydrants and mailboxes, like mood rings, turned red, white and blue almost overnight. It seemed like every consumer product -- from cereal to sneakers -- had a bicentennial version, complete with stars and stripes. Even Disneyland temporarily replaced its nightly extravaganza with one called “America on Parade.”

Americans were aglow with a patriotic fervor, hopeful that the pain of Vietnam and Watergate were finally behind us.

The American Freedom Train began chugging along its cross-country journey on April 1, 1975. With 26 cars and three newly restored steam locomotives, the train toured the Lower 48, ending its sojourn in Miami, FL on December 31, 1976.

At each stop, visitors road on a people-mover conveyor through the train’s 10 display cars. What they saw was captivating: more than 500 treasures of Americana. George Washington's personal copy of the Constitution. The original Louisiana Purchase. Judy Garland's dress from The Wizard of Oz. Joe Frazier's boxing trunks. Dr. Martin Luther King's pulpit and robes. Replicas of Jesse Owens' four Olympic gold medals. A moon rock brought back by the Apollo astronauts.

I found out about the Freedom Train from my fifth grade teacher. My school would be going to see the train on May 14, 1975, when it was scheduled to chug into Cleveland. I was ecstatic. I, too, was swept up in the fervor. I’d been collecting bicentennial coins and stamps. I had a T-shirt of a roller-skating rabbit bedecked in stars and stripes. I’d been drawn to bicentennial products, even Kentucky Fried Chicken.

Best of all, a field trip into Cleveland meant no classwork for the day.

Then my mom told me she’d received a phone call from my teacher. Seeing the train meant standing hours in line, climbing steps to a platform and more standing on the narrow conveyor belt. People with disabilities were not accommodated in any way. There were no apologies or rationalizations for this. Why would gimps need to go see it anyway?

I did not go to the Freedom Train. I spent the day at home watching game shows and soaps.

Yes, that was 40 years ago. Things have improved, I tell myself. Attitudes and the world around me have improved.

Yet just a block from my house, the street does not have curb ramps. When I go to doctors’ offices, there are no lowering exam tables that I can transfer to. When I drive through residential neighborhoods, I see multitudes of inaccessible houses and apartments. Restaurants have raised tables I cannot be seated at. New buildings are constructed with barriers in violation of current building code.

Then I wonder, when does the real “freedom train” arrive? The one without barriers? The nation that welcomes all?

I’m ready and waiting at the station.  

LEG ENVY, ARM PREJUDICE

All body parts are not created equal. This is often the opinion of non-gimps, especially when they take a break from their normal lives to observe gimps. Like when they stand on fully functioning legs waiting for their macchiatos, then take a window seat at the ADA table to sip and watch gimps pass by outside.

Before you know, a gimp rolls by in a chair. That gimp might be a CEO dressed in a bespoke suit and handmade Italian leather shoes on his way to a meeting at his blue chip company. Or she might be wearing a vintage Comme des Garcons dress and carrying a Fendi baguette while headed to a show of her artworks at a gallery. Or perhaps it’s just a regular Joe or Jane gimp. Doesn’t really matter, because the non-gimp’s instant reaction is typically something like:

“That poor gimp, confined to a wheelchair because of his/her useless legs.”

Legs, legs, legs! Unless you’re a Rockette or an Olympic long-jumper, why is this pair of body parts so gosh darn important? Why do non-gimps insist that these below-the-waist appendages are the only credible, non-pitiable way to get around in the world?

I know what you’re thinking, dear reader. I’m overly sensitive because I use a wheelchair. I’m bitter because I’ll never get to stand three hours in line to ride 90 seconds on a rollercoaster. I’m angry because I’ll never get to feel the excruciating tearing away of my ACL while playing intramural basketball.

Okay, perhaps you’re a little bit right. But only a little bit, because my main point is this: what in the Sam Hill is wrong with arms? Why do non-gimps never see a gimp pass by and think:

“That poor gimp, can’t wash her hair because of useless arms.”

Yes, dear reader, some of us wheelchair-using gimps also have arms that don’t measure up to non-gimp standards. In my case, the juvenile rheumatoid arthritis that jolted my immune system into overdrive destroyed not only the joints in my legs, but also the joints in my arms. It’s been 40 years since I last touched the top of my own head.

I have to do a lot of things with aids for daily living, or ADLs for short. What’s an ADL, you ask? It’s a 50 cent piece of plastic that you order out of a catalog, pay $50 for and use to compensate for your gimped-up arms.

There are long-handled comb ADLs, long-handled toothbrush ADLs, long-handled shampoo applier ADLs, make-up brush ADLs, foot scrubber ADLs, dressing stick ADLs and of course, the ADL probably everyone has seen: reacher stick ADLs.

I have multiple cabinets, drawers and closets in my house filled with ADLs, because each is tailored to a specific task. I mean, forget about trying to use a spoon with an extended handle to put on your socks.

There are even some things that no ADL can compensate for. For instance, I could spend the gross national product of Guam on ADLs and still never be able to use a Q-tip for the task that the Q-tip company tells you – nudge, nudge; wink, wink – to never use it for.

So the next time you see me motoring by in my chair, don’t assume that non-functioning legs have put me in a wheeled, mechanical prison of despair.

Instead, assume that my closets are filled to bursting with 50 cent pieces of plastic.

ISOLATIONIST POLITICS: THE VIEW FROM THE BACK OF THE TROLLEY

Trolleys are making a comeback. Not the trolleys on tracks like you see in old black and white photos of American cities from the early 20th century. You know, the ones bought up by the American car companies after World War II in order to increase dependency on the automobile.

No, I'm talking about small circulator buses designed to look like classic trolleys, right down to the uncomfortable wooden bench seats. They make frequent stops along short routes to give folks more transportation options.

I'm all for options, as many as possible. Choice is good. But if you're a wheelchair user and you want to hop the sort of trolley I'm referring to, well, your options are fewer. As in, only one. There's only one spot onboard where you can sit, and that's at the back. Behind the last row of seats. And it gets worse.

You see, I thought that 25 years after the passage of the ADA, we had worked out some of the issues. It appeared that newer buses were being designed to let people in chairs board in front via a ramp. And the driver could easily deploy the ramp at the touch of a switch without having to exit the bus. This is not true for the new trolleys.  

No, the trolleys require the driver to exit the vehicle, manually open a rear door, deploy a lift (not a ramp that remains stationary while you're on it), get the chair user on the lift, raise the lift up, manually close the rear door, board the trolley, walk all the way to the back, tie down your wheelchair, then return to his/her seat. All while your fellow passengers look at their watches and sigh.

But it doesn't end there. Once the trolley starts up again and hits the first small bump or pothole, you realize that the wheelchair seating is located behind the trolley's rear wheels. You know, the bounciest part of the vehicle: the spot that whips riders up and down. And on hot days -- and we have a lot of them in Miami -- the rear A/C unit mounted on the ceiling drips, drips, drips big drops of unpotable water down onto the wheelchair-using trolley rider.

After taking a ride on one of these trolleys, I wasn't sure which part of the ride motivated me the most to never want to ride one again. Was it the discomfort I felt at inconveniencing the driver or delaying my fellow passengers? Was it the slight vertigo from riding on a lift instead of a stationary ramp? Was it the big wet spot on my dry-clean only dress, courtesy of the A/C unit? Was it the bouncing that imperiled my tail bone?

No, it wasn't these things. It was sitting dead last behind everyone else onboard. Not because I think I'm better than anyone and should sit up front. But because of the way it made me isolated. And those of us who are disabled already get a bellyful of isolation, day in, day out.

Invitations to the homes of friends and family that have to be turned down because houses are rarely built without steps. Entering buildings at the side or the rear because even newly built facilities often have steps at the main entrance. Sitting in the "special wheelchair section" behind the last row of seating at a concert. Happy hours spent sitting three feet below and out of earshot of your friends because all of the seating at the bar is on stools at raised tables. And on and on...

A quarter century has passed since George H.W. Bush signed the ADA. Yet society still insists on constructing minimally inclusive, isolating built environments. On denying that disability is part and parcel of the human experience. On looking the other way when the largest minority group is told -- in so many words -- to either pass as non-disabled, or go sit in the corner.

It's time to come out of the corner and plant ourselves in the middle of the room.