Edge of access
“Here’s a picture of Brattleboro’s sidewalks in winter,” Laura Momaney writes on Facebook. “Use your imagination to discover the impossibility of navigating such a thing in a wheelchair.”

Edge of access

If a wheelchair can’t get out of the forest, does anybody care?

BRATTLEBORO — In 1960, my mother thought she had been blessed with an exceptionally content baby. I was barely out of the womb when she discovered that I had been stricken by polio.

I was immobilized by paralysis, even stripped of my ability to cry. I certainly couldn't twist about and flail the way most newborns do.

Inside my head, the pain must have been mythic in the punishing hands of this neurological disease. Hot pain rages over the scope of the body and is tremendously difficult to endure. High, life-threatening fevers make the brain swell dangerously, and permanent muscle paralysis ensues.

I was six weeks old, just two weeks shy of receiving the first of several immunizations for polio. I've been told by doctors that I'm the youngest survivor in the U.S.

The doctor sized me up, informed my parents of my abysmal odds, and admitted my withering carcass to the hospital where they could presumably keep me until my tiny body gave up.

Back in the day, the medical community was not enlightened about the need for physical contact or any sort of interpersonal attention during inpatient stays. I was pretty much left alone in a crib while everyone waited patiently for me to die.

Years ago, I went back to this hospital to read the daily records. The clinical minutes and notes horrified me, and I felt immense compassion for my little self.

For starters, the visitors' logs say that nobody came to visit me except my grandmother, and she stopped by only once. I eventually stopped eating or sleeping.

But I guess I made a decision to stay and decided not give up. As soon as my ability to cry returned, I opened my mouth and did not stop.

The hospital called my parents and sent me home. My debut into life and my beginning there, on the edge of death, starkly alone, left lasting and prominent pain in my heart and in my soul.

In the cosmic lottery of parents I had drawn two emotionally detached, if not truly disturbed, ones. Neither was inclined to be sympathetic. I was not encouraged to explore my feelings. The few times I remember giving voice to them, the repercussions were swift and severe.

This environment and the life lessons I learned from it crippled me in ways well beyond the physical realm but instilled in me one way, at least, to deal with life.

I learned endurance and fortitude quickly and on all fronts. I developed mental muscle and emotional callouses before I turned two. I expected nobody to accommodate my “special needs” (including myself), and that is how I've moved through life.

* * *

There were no special accommodations for the handicapped when I was young. I grew up walking on leg braces and crutches. I've been in my wheelchair for only 13 years.

I strive and succeed to live independently. In the past, I have used vocational rehabilitation services to help pay my way toward college degrees and foot the bill for necessary things like crutches and braces before Medicaid was around.

Some services are available to provide in-home help for the disabled, but there is only so much financial assistance and helping hands to go around. I pride myself on the fact that I do it all by myself. If I don't truly need it, then I'd rather the aid go to somebody else.

When I first moved to High Street in Brattleboro four years ago to start creating a new life here, the only nearby laundromat was located on Elliot Street. I couldn't get into it because there were two steps. When I found this out, I cast my eyes to the heavens and said, “Are you f-g kidding me?”

I did all my laundry in my bathtub and draped it over fans and my heater.

Simply finding accessible housing was a difficult bitch of a task, and it took me several months. During that time, I was living out of the Super 8 motel, funneling most of my disability payments into paying for my stay there and hanging out with the chambermaids to pass the long nights.

Now I live in a building that has laundry facilities - only four washers and dryers to serve 70 apartments in the Samuel Elliot building. So, more often than not, I still do it in my tub.

As for the state of our sidewalks, I've one thing to say: They suck. So I mostly ride the road, to the consternation of most of the population - including myself.

* * *

I'm a very social creature and love making and maintaining friendships. I don't do well being closed up in my apartment so I get out often - as often as I can.

I can't help but notice that Brattleboro is not wheelchair friendly. I'm sort of used to that, so I haven't put up much of a fuss.

But recent renovations to the Brooks House that cost millions of dollars have pushed me up against an edge - the edge of equal access.

Handicapped accessibility has not been given its full and deserved due there. I've had a friend in a power chair turned away from an establishment it houses, and there are no signs up to even show where accessible entry is. I've been told over and over that Americans with Disabilities Act (ADA) regulations have been followed to the letter, and I don't doubt that's true.

But if even one person has been turned away ever, and if it is an exercise in sharp cognition to find the right entrances to places, then we're still not doing something right.

And all this rich history in our buildings that the town is so wedded to? It prohibits businesses that inhabit them, as well as cultural and social events within them, from creating equal access for visitors and citizens.

And what's with the grandfather clause? What about the disabled grandchild who can't get in the building?

And this past contained in our structures we so zealously fight to maintain? That's somebody else's past, not yours and mine.

We only live once, so I'm told, and I have no reason to believe otherwise.

Everywhere else I turn, I'm advised and encouraged not to live in the past. And I, for one, don't want to. My past keeps me up at night.

I suggest we live in the present, as everybody loves to advise. Positivity is a powerful tool. Like a platoon of soldiers trained and armed with mighty optimism, it's a crucial supporting force and backup for my courage.

I use positivity liberally to get through the days of my life. At night, I add a drink or two. Liquid courage really has nothing over the genuine article, but it sure feels and tastes good.

And make sure each life lived is filled with as much ease, richness of culture, friendships and happiness as we can achieve in the short span of time each of us retains the most remarkable privilege of all.

The privilege to be alive.

* * *

Medicaid pays for a new wheelchair only once in five years. They're very precise about it, too: not until the exact date on their records say that you rode the old one home. They will pay for some repairs during those five years, but the companies that service wheelchair users and their wheeling needs are woefully unethical and tragically lacking in compassion.

I am definitely one to raise the alarm when I have been treated poorly by one of their technicians but very little within these dynamics ever changes.

For instance, I have devoted a great deal of energy and patience the last four months trying to get multiple broken things fixed. With minimal success.

Spokes literally keep falling off my wheels and dropping in my wake. When I hear that special clang I know so well, I turn around, pick them up, and put them in my purse. It gives me some extra movement to help manage my weight and gives me something to keep in my empty purse that I will never have to spend even if I wanted to.

I have a whole collection of spokes in my purse and at the ready if, like Hansel and Gretel, I ever lose my way. Nothing will eat these bread crumbs.

So if you're walking down the street and find a 6-inch wheel spoke, pick it up and save it in case you ever meet a giant with a mean disposition who's suffering from a toothache he received when bumping into his beanstalk.

Maybe that's stretching the elastic band of positivity a bit too far, for some, but it works for me and lets my imagination have fun.

Have a wonderful holiday season, and don't forget to count your blessings. I'm sure you don't have to look that far to find them.

(Hey! Is that my spoke in your purse?)

* * *

I am hoping to simply raise awareness of what the reality for people in wheelchairs is like using Facebook and through my friends. Somebody should be coaxing a more heightened awareness into people's minds. I can't think of a good enough reason why it shouldn't be me.

Someday the able-bodied will be burdened with this particular struggle. Or one whom they love. I guarantee.

I'll be providing this awareness so people can see what the reality is for wheelchair bound members/visitors of the Brattleboro community. I thank you in advance for caring enough to look at and respond to them. Hopefully you will develop an empathetic eye for our reality.

If compassion and empathetic understanding is achieved, then perhaps, just perhaps that alone will have meaningful impact and help pave the way for future change. I believe the outcry must come from the bottom (the people) and wend its way up to the top (politicians/lawmakers) and not the other way around.

There can't possibly be a personal investment in change if people aren't even aware there's a problem. Most people are blissfully unaware of how woefully inadequate accessibility in this town is.


Laura Momaney recently began a foray into public advocacy by illuminating a frustrating experience with a restaurant in town on Facebook — an act that struck a nerve and stimulated a debate about access for all in downtown Brattleboro. (For the record, several days and 18 status update shares later, she updated that her original complaint was addressed.) 

As a result, Momaney posted “Edge of Access ‘On the Street,’” a Facebook album that features photos of more than three dozen commercial spaces in Brattleboro and her commentary about the extent to which access is denied.

“I’m showing you my reality and the reality of other people in wheelchairs,” she wrote to one correspondent, distressed that she was publicly taking critical aim at business tenants and not the owners of the buildings that limit access. “I have endured it all my life in quiet dismay.”

Subscribe to the newsletter for weekly updates