TO PARK WHERE DRAGONS PARK

I loved this article written by Geoff Edgers in the Sunday Boston Globe magazine.  Its title was "Access Denied" and it ran in 2007.

In 12 years, Blue Man Group has played a few thousand shows at the Charles Playhouse, as part of a company that, conservatively, pockets $2 million a week. But there is another, more important number you should know: Twenty-six. That’s how many stairs you have to climb to watch the paint-spattering baldies in Boston. A woman in the box office told me this on a recent afternoon. What’s odd is that I was sitting in front of her in a wheelchair. Wheelchairs, incidentally, don’t do so well on stairs. "We can get you carried up," she offered cheerfully. "A lot of people do that." 

How dignified. And how virtually impossible for someone like Brian Moore, a 22-year-old Boston man who uses a heavy, battery-powered chair as the result of muscular dystrophy. "All his muscles have rotted out and he’s taking steroids that make his bones brittle," says Jim Moore, Brian’s father. "Even when we transport him, we have to use a special lift to keep him from breaking his arms and legs." 

Twelve years ago, I took a wheelchair out for a test drive through Boston, as part of my own unscientific study of the city’s attempts, or lack thereof, to comply with 1990’s Americans With Disabilities Act. Since then, I’ve found myself making mental footnotes as I see the best, and worst, efforts to get up to speed. Recently, with Brian and others in mind, I figured this was a good time for an update. Bear in mind, my experience, no matter how annoying, was brief. I can walk. The point was to get a refresher, up close, on how the city fails to be accessible to all. 

Three snapshots from my day on the town: 

A minivan with a "This Heart Loves Jesus" sticker is parked illegally on Court Street, blocking the ramp to the curb. I try anyway, and my wheelchair topples, soaking my leg in a puddle. "It’s so hard to park," the driver explains as she emerges from Staples, pleading with me not to give her a ticket. She scoots off, not giving me time to explain that I’m a reporter, not the police. 

I get stuck momentarily in a section of loose brick near City Hall. Brick, as those special people in the Fenway Alliance love to remind us, is such a wonderful aesthetic touch. Just try riding a wheelchair over it. 

At Locke-Ober, I arrive to sample fancy-schmancy chef Lydia Shire’s cooking. Instead, I’m confronted by two granite steps. The man at the door offers me the name of a manager to contact to complain. I would have preferred the soft-shell crabs. 

None of this surprised Bruce Bruneau. He was my guide back in 1995. When he was working, Bruneau was the trailblazing watchdog in the state’s Office of Disability. Now 59, Bruneau’s off the beat. He sounded discouraged. 

"I thought I could make a change when I started doing this," Bruneau says. "I was wrong." 

During the day, I found too many places without curb cuts, making the sidewalk a dead end for anybody in a wheelchair. I found steps blocking my way into the best restaurants and most basic coffee shops. Just try figuring out which T stations have an elevator. Want to get out at Government Center? They’re working on it. 

John Kelly, a local wheelchair advocate, told me of one of his least favorite spots, a warped stretch of sidewalk on Huntington Avenue near Symphony Hall. It was never installed right. The Massachusetts Architectural Access Board agrees with Kelly. Since November of 2005, it has been fining Boston $500 a day until it fixes the area. Despite the city’s appeal, the fine stood at $325,000 at press time. 

"Nobody knows," Kelly complains. "It’s barely been in the papers." 

Back to the Charles Playhouse. Just to get into the box office, the cashier had to open a door in the neighboring Shear Madness space and get a construction worker to push me up a crumbling, too-steep concrete ramp. Inside, after nearly selling me a ticket, she mentioned the 26 steps. I didn’t make a stink. For one thing, I needed her help getting back out. 

"Well," I told her, "I’ll pass for now." 

"You can always come back if you reconsider," she said, and smiled.

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So I wrote a letter to Mr. Edgers (which, as an aside, he never responded to... which, as another aside, only hurt a little bit). 

Dear Mr. Edgers,

I want to say thank you for your article "Access Denied" in yesterday's Globe Magazine.  My daughter, who is 8, has "mild (a relative term I assure you) cerebral palsy".  As a member of the majority "able-bodied" community, I may not have given much thought to the disabled.  Not, of course, until I became a member of the community through my child.  For 8 years I have been astounded and exasperated by the (lack of) accessibility (another relative term) in and around our fair city. 

My daughter, given her "mild" status, uses crutches to get around most of the time.  On longer jaunts and adventures she either uses a wheelchair or a special stroller.  I am continually saddened and disheartened as access is denied us at what feels like every turn.  Every point you raise we have faced.  When I share these stories with others, I'm often left feeling like they think I'm exaggerating and blowing things out of proportion.  It's only two stairs, right?

In addition to the physical inaccessibility (the lack of curb cuts, even one stair to enter a place) is the lack of understanding and the abject apathy we meet each day from most members of the able-bodied community.  People will mill about behind us, studiously avoiding making eye contact, as I struggle to open a door and get my daughter over the lip of the threshold, through the doorway and into a building. 

The handicap parking space is NOT a convenience.  Neither is it a live drop off or pick up.  It takes my daughter 7 to 10 minutes to disembark from my car in order to enter school each morning.  Her movements are difficult and awkward and, thankfully, she has an iron will and insists on doing it herself (she is, in case you didn't note her age, a "big girl" now).  This is the same amount of time it takes the other second grade students in her class to hop, skip and run 5 city blocks.  Yet, their parents find it necessary to park in the handicap spot to drop off their child, often sitting there for several minutes while they yell after school instructions to their child as the child retrieves a book bag from the back seat.   When confronted, those same parents placidly tell me (not unlike the woman parked across the curb cut in your article) that they'll "just be a minute". 

Elie Weisel said there is nothing worse than indifference.  How right on!  I understand how you and Bruce Bruneau can feel disheartened at seeing so little in the way of change.  Yet, as I read your article I felt buoyed.  My load was made lighter because of your caring.  You acknowledged my struggle, validated my reality.  We are not alone.  Thank you.  Don't give up.  You really do make a difference.

With appreciation and blessings,

Hali
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So it happened again this morning.  I'm driving like a maniac to get my kid to school on time and I pull into the parking lot only to find that I am third in line for the Handicapped Parking spot.  Really?! That's odd, passing strange, because I'm the only one with a placard! I sit in my car, nostrils flaring, rage barely held in check as I run my response options in my head. We're going to be signed in late again because of these nincompoops. Last week when I blocked the person in and then took my time getting out of the car, assembling the wheelchair and meandering as slowly as I could to bring my daughter to her classroom was, I thought, brilliant on my part and fitting for the asshole in the hp spot - who, as an aside, when I pulled up next to him and showed him the placard told me huffily that he'd only be a minute. But that, like the times I emerge from the car waving the placard and screaming like a banshee, embarrassed my daughter. This time I just wait, biting my tongue, taking deep meditative breaths. The woman in the car ahead of me sees me, sees the placard on the mirror. But she doesn't care. She gets out of her gigantic suv, opens the back door, gets her child's backpack, walks around to the other side of the car to give her child the backpack and spend a moment saying goodbye, fixing his hair, licking her finger to wipe something off his cheek. I am just about ready to explode when I catch my daughter's eye in the rear view mirror, watching me anxiously, waiting to see what I am going to do, her eyes are pleading - please do not freak out and embarrass me... again. I look at her and smile. I say, "Don't worry honey, I won't embarrass you. I'm just going to get out of the car and kick her ass, ok?" For a second my daughter's eyes get big, (she believes me; I have given her reason to)... and then she smiles because her  5th grade penchant for bathroom humor caught the word "ass" and she begins to giggle. "No, really", I say with a mischievous smile, "I'm going to get out of this car and kick her ass. Watch me." And with that I make a move as if I'm going to open the door. But just as I do and my daughter shrieks for me not to, the woman gets in her car and drives off. "You are SO not like other parents" she says to me with relief in her voice. And then we both crack up. It's the only way to keep my sanity. Oh, and not embarrass my child.


The question is though, why are there so many entitled obnoxious assholes?! No, that's not the question. The question for me is what is the lesson I am teaching my child? What am I modeling here? How do I teach her to advocate for herself in the face of such blatant apathy and flagrant disregard for rules, laws and human beings? The handicapped parking spot is designated by law. It is not a suggestion, an opinion, or a convenience. No one should be parking there without a real need. Believe me, I wish I didn't need to have a placard for my kid.