I hope to have more conversations about audible traffic signals, particularly audible traffic signals for the streets I cross. But at the moment the possibility of such conversation is just a little daunting. I’ve been temporarily silenced by a serious attack of Marvelocity Syndrome.
It ain’t easy being marvellous—especially when you’re not—even though you are thought to be! I know this from an insider’s perspective. I am one among millions of Earth’s citizens who suffer from Marvelocity Syndrome, a chronic and all-too-common condition that afflicts people with disabilities.
Like all syndromes, Marvelocity Syndrome is actually a collection of characteristics that tend to occur in groups and follow some predictable patterns. It is characterized by an ongoing tension between myth and reality. Though the condition has likely existed for as long as there have been people with disabilities, it wasn’t officially named until 2007, when Wendy Edey drew together the data gathered in more than fifty years of personal life research. You might call it a longitudinal study with a flexible, environmentally responsive research design. As its discoverer I could have assigned my own name to this syndrome. But I never wanted to be permanently associated with something miserable, the way Alzheimer, Parkinson and Lou Gehrig have been. So I chose a term that describes the process, starting with marvellous and picking up speed, in other words, increasing velocity.
Marvelocity Syndrome is a serious condition, spread by well-meaning but ill-informed observers. It starts out with early admiration. Left unchecked, this early admiration can turn into the belief that the thought-to-be-marvellous person has supernatural powers, extended senses that compensate for the debilitating effects of the disability. This unfounded belief will henceforth be known as the Myth of Marvellousness. Like viruses and other nasty bugs, myths of marvellousness start out tiny and harmless. Then they grow and multiply. They are spread throughout the population by unsuspecting carriers. Given the right conditions, they begin to cause infections by growing where they were never intended to take root. Sometimes they start growing in the minds of people who have authority and resources that could be used to improve the lives of those who are thought to be marvellous. Damage can occur when the myth of marvellousness becomes the basis for decision-making. We people with disabilities suffer the worst effects of Marvelocity Syndrome when our needs are not taken seriously because we are admired so much. Additional complications include loss of temper, vanishing sense of humour, feelings of victimization and just plain demonstration of bad manners. It’s a cruel disease, believe me! You heard it from a patient with a full-blown case.
It took me several years to identify the connection between Marvelocity Syndrome and my quest for audible traffic signals. The signals are, for me, a need. I need the signals to help me cross streets safely, the way sighted people do, by knowing, rather than guessing when the signal tells you to walk. As is the case with many great discoveries, the evidence of the connection has been there for some time, but the moment of recognition came in a blinding flash (no pun intended). It all came together for me in an impromptu conversation with a carrier of the myth of marvellousness.
Like many infectious people, the man who talked to me about audible signals had been completely unaware that he was carrying the myth of marvellousness. Like many potential victims, I also was unaware. Neither of us noticed it until our conversation drew it out. One minute we were chatting amiably, the next minute I was angry enough to throw a brick, and he was running for cover, not taking any further chances, lest there be a brick within my reach. Since he is by nature both a man of generosity and compassion, the intensity of our conversation took us both by surprise. The myth of marvellousness had done an ugly number on us. Here’s how I remember it.
Him: “The audible signal you asked for is not on our list. We install three signals a year. We do the ones that need it most.”
Me: “How do you decide which ones are needed?”
Him: “The CNIB knows. You’re known to the CNIB aren’t you?”
Me: “Yes, but I don’t quite understand how that matters, given that they didn’t get in touch with me to ask any questions. Did they take me off the list without being required to ask me any questions?”
Him: “Well, I don’t know if it’s that specific. There’s a policy that’s followed. What is the problem with your signal crossing anyway?”
Me: “I push the button for the Walk signal, and I wait for the light to change. It’s a short light and you have to step out right when it changes. But there is no good way for me to know when it changes. Sighted people tell by looking at the light.”
Him: “But you listen to the traffic, don’t you?”
Me: “Yes, but you can’t always tell by listening to the traffic. What if there is no traffic for twenty seconds? What if a lawnmower is going? What if there’s construction? What if somebody stops to make a left-hand turn? What if I have a cold and my ears are plugged? What if the wind is making a big noise? What if the cars are new and very quiet?”
Him: “Well, it is true that some intersections don’t have enough traffic so you can tell for sure. But you must be crossing that street somehow.”
Me: “Look, if you want to understand this better, then come down to my neighbourhood and we’ll go to that corner. We’ll put a blindfold on you, and then as soon as you think its safe, you just walk right across that road.”
Him: “Oh no, no no. That’s not how it is. That’s not something I could do. I couldn’t do that. You people have a special ability, an extra sense. You sense when it’s safe. You sense when those cars have stopped. You’ve had the training from the CNIB. I couldn’t do that.”
This conversation illustrates how the myth of marvellousness can seriously impair the judgment of people with decision-making capacity. What it does not show is how Marvelocity Syndrome can lead to dead-end conversations, and ultimate despair. I didn’t throw a brick at this man. There wasn’t a brick within my reach. But I did lose my temper, which scared him away,leaving me talking to a blog about audible signals when I need to be talking to a person in authority.
In future papers I will document my research regarding the conditions that propagate the myth of marvellousness. I will show how we people with disabilities unintentionally contribute to the growth of the myth by working so hard to overcome barriers. I will examine the influence of the positive media messages about independence in the absence of clear statements about need. On a hopeful note, I will continue to document and call attention to the measurable, undeniably enormous improvements in service to people with disabilities that have taken shape over the past thirty years.
And yes, I will try to find a way to restart the conversation about audible signals. The man I almost threw the brick at is, as I said earlier, a generous and compassionate man. At present he only has the resources to install three signals a year, and he feels the pain of putting those in because citizens call him up to complain when new signals are installed. He is working with a policy that keeps my needs low on the list. So he’ll have to be passionate about advocating, and it would really help him move forward if the CNIB could be stirred to passion as well.
Some day more people in positions of power will speak honestly and knowledgeably about the street-crossing challenges faced by those of us who don’t see the lights. When they do, I’ll be there to back them up with sound logic and decades of personal experience. Some day there will be a cure for Marvelocity syndrome. In the meantime, I promise to try to work on my sense of humour, and I also challenge compassionate and generous people everywhere to deepen their understanding of Marvelocity Syndrome, recognizing its causes, symptoms, and consequences.
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