Giving Breast Cancer Pink the Middle Finger

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Susan Rahn Stickit2Stage4 breast cancer

[by Susan Ashline]

In the thick of Breast Cancer Awareness Month, one woman living with the disease is engaged in hand-to-keyboard combat against the color pink.

I remember when Susan Rahn followed me on Twitter. As with all my new Twitter follows, I checked to make sure her account wasn’t spam, my only barrier to following back. It wasn’t.

But I didn’t want to follow her back.

Her cover photo was skeleton hands with the middle fingers sticking up, pink ribbons wrapped around the bones. Her Twitter handle: @Stickit2Stage4. Susan had metastatic breast cancer, which is cancer that has spread to other organs. And I saw death. My instinct was to distance myself. I wondered, briefly, how I would feel if I’d gotten to know her and she died. I didn’t want to risk feeling hurt. Twitter suggests followers based on who you follow, and I anticipated an onslaught of follows from women who were waging a futile fight for their lives. I foresaw my breath squeezed out by a digital feed full of doom. And most of Susan’s tweets were about metastatic breast cancer. I thought – I have nothing to offer her.

Eventually – hesitatingly – I did follow her back.

Still, I ignored her.

In August, I found myself at the New York State Fair facing a wall of women captured in photo frames with pink matte board, smiling and lively. But most were no longer alive – they were dead. It was a breast cancer victim/survivor display that I stared at unflinchingly, reading the women’s profiles and silently wishing each back to life.

A week later, I saw Susan’s tweet: “Wearing a color does nothing. Try REAL actions. Make a meal, clean – that is support.”Susan Rahn Twiitter breast cancer awareness tweet

That made sense. I could do that. I knew how to clean.

I messaged Susan through Twitter, offering to clean. She replied – swiftly – with a rant against what she called “the pinkification” of breast cancer. “Who does that help?” she wrote. “So I tweet and call out the BS for what it is, in the hopes that I can maybe change the landscape of the public’s perception of breast cancer.” She ended with, “I deeply appreciate your offer. I promise to let you know if I do need help. I’m sure my time is coming.”

The corners of my mouth instantly mirrored the frown-face emoji that punctuated her last sentence.

I had been under the impression a portion of proceeds from sales of pink items went to breast cancer research, and I told her so.

She said that was a myth, “And if money does happen to go to research, less than 2% goes to fund research for metastatic breast cancer; the cancer that kills.” She wrote that 113 women die every day from breast cancer; a projected 40,450 men and women in the U.S. this year. “Those are the same numbers as the height of the AIDS epidemic, but no one puts any urgency on breast cancer research because they focus on awareness.”

I offered to write about Susan’s war on the pinkification of breast cancer. I could do that. I knew how to write.

No sooner did she accept my offer, that I got a message from Jeff Rahn, another of my Twitter followers: “As you probably picked up on, Susan is very passionate about the various ‘pink scams’ out there and is trying so hard to get actual research instead of awareness campaigns. We are all aware.”

She was his wife, he said, and a great mom and step-mom. And he thanked me for reaching out to her. “Just acknowledging a terminally ill person means more than you can imagine. So often they are forgotten.”

When I called Susan for the interview, I confessed my reluctance to follow her on Twitter. I wondered aloud whether my reaction to shut her out was not uncommon, and perhaps the reason her message, of the need for more emphasis on research, wasn’t reaching the general population.

“Which is why I’m so loud and obnoxious,” said Susan, acknowledging my reaction wasn’t a surprise.  Social media users labeled her angry and bitter, she said. “They think I’m angry and bitter because of my diagnosis. But ya know what? Anger and bitterness gets sh*t done.”

Susan said she feels awareness campaigns are partly to blame for the instinct to block out those who are terminal. “The message has been that breast cancer is a treatable and curable disease. If you catch it early, like if you catch a cold, you deal with the symptoms, treat it and go on with your life. But that’s not the case, because 6-10% of women – like me – get diagnosed with stage four from day one. And you don’t necessarily have to have any prior family history.”

Maybe I’d shut the door on Susan’s Twitter page because she represented what I feared – that she could be me.

Lingering rib pain led to Susan’s diagnosis of stage four breast cancer just months after getting a clean read from a routine mammogram. She was a newlywed, not quite a year into her second marriage. She had one son, her only biological child. Genetic testing turned up no markers for breast cancer. She was 43 years old.

She was told she had months to live. It was August 2013.

Susan continues to fight for her life – and the lives of others – by advocating for metastatic breast cancer research. She is the editor of a newly-formed digital magazine, The Underbelly: Illuminating Breast Cancer’s Darker Side (TheUnderbelly.org), which launched an October Twitter campaign (#WhyIsThisPink) to make the consumer aware that many merchants collecting money from selling pink items are simply lining their own pockets.

“It’s okay if something’s pink, as long as the money is going to the right place,” said Susan, who hopes The Underbelly will draw an audience well beyond Breast Cancer Awareness Month. “We want to bring the ugliness and the things that people don’t want to talk about into the light. It’s not all pink and fun, and it’s not a sorority. The narrative needs to change.”

Author’s note: I’ve since learned a lot about breast cancer pink. Susan’s opinion doesn’t stand alone – far from it. Voices can be heard all over the internet calling for an end to the “pink” campaign and a focus on dollars for research to find a cure. The pink campaign was successful in raising awareness. Now, it’s time to move it forward. #BreastCancerRealityCheck

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What Does Your Front Porch Say About You?

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[by Susan Ashline]

We walked door-to-door this week in what is known as a “bad part of town” in the city of Rochester. I’m familiar with the street name from my days as a news reporter. It was always on the scanner; shootings, stabbings, and miscellaneous crimes.

In spots, the patch of lawn separating each house could be measured in inches and not feet. We saw one garage that had a house number. We saw houses with broken steps and broken siding and peeling paint. There were broken windows, broken doors.

But there were fabulous porches; well-kept porches and elaborate porches. And there were amazing gardens in front of them that rivaled any you’d see at an admission-entry conservatory. There were porches adorned with flowering baskets more stunning than those at displayed at landscaping businesses. One garden showcased a marvelous variety of colorful flowers, weed-free rows, and an immaculate brick walk-way lined by solar lights.

And one porch had a neighbor on it asking the other neighbor if she could borrow the key to another neighbor’s house to check on it while they away, because she didn’t have the neighbor’s key with her. “It’s that kind of neighborhood,” she told me cheerfully, and smiled as she said it.

Porches had like-new bench swings and patio furniture. One had a hand-designed piece of art stuck into the ground at the base of the front steps; nothing more than twisted metal with blue glass bottles hanging from it, but it was attractive and unique. Most of the porches had new looking placards with painted flowers or sayings, or simply announcing “welcome.”

What does that say about a person?

Had I walked onto dirt-covered, unornamented porches with rotting, wooden furniture, it would’ve gone unregistered. But the porches . . . I noticed the porches.

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Politicians Being Human – Our Political Rally Journey

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[by Susan Ashline]


In the end, my vote came down to a missed handshake.

My 11-year-old son got interested watching news reports of the presidential election, then he was watching debates. When I heard Bill Clinton was coming to Rochester to stump for his wife before the New York primary, I thought Reed would like to see a former president.

That’s how it started: simple.

The night I offered up the idea, my son got increasingly spirited, and as I lay in bed with flu, he popped in and out, strategizing on how he was going to get Clinton’s autograph. And he did.

Reed became hell-bent on getting each candidate’s autograph. He fashioned a special election folder from a two-pocket school folder, labeled it and affixed election stickers. He borrowed my leather briefcase and organized it with permanent markers, pens, paper, and various utility inserts he’d made with black-and-white checkered duct tape.

To score an upfront view, we arrived at Hillary Clinton’s rally an hour ahead of the doors opening. I was surprised to find myself shoulder-to-shoulder with 1,300 people. Clinton’s speech done, she walked the perimeter of the podium (the “rope line”) shaking hands. Some members of the democratic party got my son’s duct-taped signing sheet to a Clinton staffer. While we waited for it to come back to us, Rochester Mayor Lovely Warren stood near us, talking to someone. She overheard me telling her staffer that my son had been hoping to meet Hillary.

Warren, who doesn’t know me and never met me, said to her staffer, “Take them back.”

But it was too late, Hillary had just left. Back came Hillary’s autograph to Reed. Warren’s ever-so-slight gesture left a big, positive impression on me, and I spent time wondering why. It was impulsive. It was not asked for, but offered. It was . . . human.

We didn’t leave too far in advance for candidate John Kasich’s rally the following day. Who would go? No one was voting for him.

We hit the traffic clog long before the rally site and encountered a line at the door that wound down the sidewalk to the tune of more than 4,000 people. Republican Mark Assini, who’s running for Congress, was shaking hands and talking to folks in line.

Once again, we managed to get in the main room, right at the podium. I liked what Kasich had to say. If I was registered as a Republican, he’d get my primary vote.

We missed the rope line walk at the conclusion, and Reed was so disheartened he didn’t get Kasich’s autograph. He stood forlorn in the main room long after it’d cleared.

Then, I noticed Kasich had returned to speak with reporters. I grabbed a “reserved” sign from the bleachers and we walked up to him. Not only did he write on it, “Reed – live your dreams!” but he also took time to tell my son an anecdote of trying to score an autograph when he was Reed’s age.John Kasich autograph

When we left, Assini was still there, still shaking hands.

Three autographs in fist, our simple venture turned complex. We were on a mission. Donald Trump was in town. A friend dropped us off at the airplane hanger six hours early, in the freezing cold. But it paid off. There was a guy who positioned himself directly in front of Trump’s podium, and we stood right next to him. Behind us were some 10,000 people.

I wasn’t “one of them.” This was a tough one for me. I’m very anti-Trump. However, if he is to be my president, it is not only my right to find out what he’s all about, but my obligation.

No, I don’t like Trump.

But at the end, he walked the rope line. Slowly. Methodically. Calmly. He stayed in one spot until he’d taken each person’s item to sign. No worries about him flying past my son’s outstretched arm.Donald Trump Autographing at Rochester Rally

While it didn’t change my opinion of Trump, it certainly softened it. It was difficult to admit to myself that after all my serious concerns about Trump’s platform, something so seemingly insignificant could matter so much.

Maybe it was that Trump understood the value of marketing himself in such a way. Maybe it was strictly vanity. Maybe he genuinely likes connecting with individuals. Whatever the case – it worked. He shook hands and signed autographs, and it mattered.

Bernie Sanders MCC Iceplex April 12 2016 (1)aReed was 4-for-4 and Bernie Sanders was rallying. I pulled him out of school because some of the best lessons are learned outside the classroom. We got up at 5:19 a.m. We waited in a long line of traffic, then a longer line of pedestrians. It was so cold we brought mylar blankets. After two hours, my body was shutting down, my teeth chattering so hard, I was afraid I would bite off my tongue.

Once we got through the metal detectors, we managed to get right up to the rope line. This meant we were pretty much assured an autograph.

Bernie was the candidate I knew the least about, so I was paying close attention to each word. I liked a lot of what he said. I thought I might vote for him in the primary. I could finally have a candidate to back, though some of what he said was too extreme for me.

He finished to cheers and applause and music, and Reed readied his duct-taped Bernie rally ticket and indelible marker for an autograph.

Bernie flew down the steps of the podium – straight out the door. He did not walk the rope line. He went for the exit. Bernie couldn’t get past the throngs of people on his way out who were reaching out to him, so he grabbed a few hands as he whirred past. One guy held out a sign and marker, and a security guy snatched it as Bernie blew by.Bernie Sanders Rushing out of Rochester Rally

From the rope line, the masses screamed Bernie’s name, trying to get him to come for a handshake. An autograph.

He maybe had to use the bathroom, I reasoned. He had to rush to another rally? He’s old and was too exhausted? But if he those were correct, then he’s not fit to be president. He’s too unskilled with time management to be president.

Is he too out of touch with people to be president?

His message rang “inclusion.” Yet, he’d excluded all the people who stood for hours in the cold, making themselves sick and hurting just for a chance to shake hands. His actions seemed incongruous with his message.

Did we not matter?

Reed Ashline at Ted Cruz Rally

We missed one autograph, but went to the Ted Cruz rally anyway. In line, we again saw Mark Assini. He came over and chatted, and told us he’d shaken so many hands at the Trump rally his hand was sore. I gave him credit – lots – for walking the lines and meeting with people.

Cruz was criticized for the brevity of his speech. But like Trump, he took an inordinate amount of time connecting one-on-one with prospective voters, posing for photos and signing. He patiently signed his name for my son.Ted Cruz Rochester Rally

In the days leading up to the primary, I tried to erase my personal feelings about Bernie not walking the rope line. But in the end, it mattered. I could go into detail about this candidate or that, and I’d like to get into specifics about platforms and agendas and criticisms and rumors. But then I’d be denying the importance of a handshake. For whatever reason – it mattered.

And because Bernie could not give me his time, I could not give him mine.

NY Primary Election Day

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Courthouse Sex Abuse Hushed by Lawyer Committee

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[by Susan Ashline]

A friend questioned the sex abuse allegations against Donald Trump. “Why would women wait until now to come forward?”

I know why.

I noticed Lawrence Baker’s name on the Attorney Grievance Committee website when I was doing research for a book I was writing. The committee is charged with fielding complaints of lawyer misconduct.

Baker had been my attorney when I went through Family Court a decade ago. I fired him. He’d been hitting on me relentlessly. I didn’t tell the judge that was the reason (and it wasn’t the only reason). I kept my mouth shut, because no one would believe me. I even questioned myself: What if he wasn’t hitting on me? I’d embarrass myself if I was wrong. I would come across as vain.

Little did I know, I wasn’t the only one.

The committee had suspended Baker from practicing law for two years, beginning in 2012. I fished around and found the report:

In 2010, Baker and opposing counsel were in a pretrial conference in judge’s chambers when the judge left the room. Baker began making sexual comments to the female lawyer, and then touched her on the shoulder. He called it a “love tap” and said the comments were a “bad joke.” But the Referee hearing the complaint stated Baker’s excuses were “disingenuous and calculating.”

It gets worse — unbelievably worse.

The Referee then determined Baker “exposed his genitals” to the lawyer, kissed her neck and shoved both is hands inside her blouse and bra, and fondled her breasts. He chased it down with more sexual comments “which included crude sexual references to opposing counsel’s anatomy,” the report states.

How did it get that far? Did she, at first, question whether it was actually happening? Would she be embarrassed if she was wrong, and come across as vain? Was she hoping he would stop? Was she thinking it would be her word against his? Would she think no one would believe her?

There’s more.

Despite already validating previous complaints against Baker, the committee did not disbar him, but handed out a limited suspension.

In summary, as though justifying a two-year suspension as harsh, the Grievance Committee enumerated their reasons. One — they’d issued Baker a letter of caution in the past for engaging in inappropriate conduct directed toward a client.

Two — the committee gave Baker a “you’ve been a bad boy” letter another time for falsely notarizing his client’s signature when he had never even met with the client (is that not a criminal act?). Bakers “client” complained that not only did he not sign the document, but he had no knowledge of the proceeding.

Baker is back in business, continuing to represent the most vulnerable of women — those going through Family Court. And the unnamed female attorney (his victim) is forced to work with a person whose actions, as outlined in the report, read like a sexual predator.

And the Grievance Committee did nothing to notify the public. Sure, you can find the decisions on their convoluted website if you go hunting for it, clicking around a maze of links, but most people are unaware of the committee and its website.

The Grievance Committee in the Rochester area is led by Greg Huether, a former Monroe County District Attorney with an abysmal record in successfully handling attorney complaints. His committee is chaired by lawyers. It’s lawyers policing lawyers. And in the vast majority of cases, the committee sends citizen complaints of attorney misconduct into the proverbial trash.

The Annual Report for Huether’s district is disgracefully bad. In 2015 (latest stats), the committee handled 1,973 complaints. Of those, 256 lawyers were sent private/confidential “you’ve been naughty” letters, 157 were were referred to the Appellate Division for a disciplinary hearing. The rest — 1,816 — were dumped.

Of course, the Baker case involved another lawyer as a complainant. When Baker’s client complained, the only sanction was a letter telling Baker, Don’t do that again. But he did. And much worse.

And instead of removing him so he can’t ever do it again, he’s back in business. Though the lawyers making up the Grievance Committee could have — should have — made the public aware of what happened, they didn’t tattle on their own kind.

A waste of money, lip service, a complete failure — I would call the Attorney Grievance Committee a joke… except there is nothing funny about this.

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No “Freedom” of Information at Monroe County Exec’s Office

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[by Susan Ashline]

At the Monroe County Executive’s office, Freedom of Information requests are more like public records held captive.

I learned the Communications Department is in major upheaval, and my request for public records may not be the only one going ignored.

This is ironic, considering the new County Executive, Cheryl Dinolfo, is pushing to create an Office of Public Integrity to make Monroe County “the most ethical and transparent government in the nation.”

Yet, access to public records is clearly not a priority for Dinolfo. A source tells me the Communications Department has undergone a “complete overhaul” and may not know the status of any Freedom of Information Law (FOIL) request. There, it is more appropriately SOIL (Suppression of Information).

It was more than three months ago I filed a FOIL request. Though I got confirmation it was received, it’s been months of chasing down the status, all of which has led to dead ends. The agency has gone well beyond the deadline for responding. Simply ignoring the FOIL constitutes a denial. However, my initial request asked for a denial in writing so I could make an effective appeal. Even a denial in writing has been denied me.

Coincidentally, my FOIL involves Judge Vincent Dinolfo, husband of the new County Executive. Granted, Cheryl Dinolfo wasn’t in office when I filed my FOIL request, but she was campaigning (same party affiliation as the outgoing County Executive, and the party’s pick). And now, she’s there. And all of my phone calls and messages have gone ignored, and all of my emails unanswered. It certainly crossed my mind this was personal.

But I even sent a tweet, and that went unanswered, too. In fact, though Dinolfo’s Twitter page has been updated to her title of County Executive, the last tweet from her account was in the middle of December. I can understand social media taking a back seat to other duties, but access to public records should be a priority.

What happens now? Based on total lack of response, I have filed an appeal. Unfortunately, my appeal is required to go to William Napier, Director of Communications, the same individual charged with handling FOIL requests.The same staffer who ignored my original request, emails, and phone messages.

Robert J. Freeman, Executive Director of the State Department’s Committee on Open Government, has issued a verbal opinion stating my appeal should be granted, as the records I request fall under my right of access to government records.

It is a shame I have to fight so hard to get public records to which I am entitled.

When an appeal is filed, the agency is required to respond within 10 business days. If other FOIL requests have gone ignored, this could mean resources at the already strapped Communications Department may need to be almost exclusively devoted to filling FOIL appeals. If the appeals are not answered in the required time frame, the Monroe County Executive’s office will stand in violation of the law. The citizen’s remedy for that is to file an Article 78 of the Civil Practice Law and Rules. A judge may award the citizen attorney fees. And we all know who ends up paying when the county gets taken to court.

Let me be the first to drop a complaint in that box at the Office of Public Integrity ribbon cutting.

FOIL APPEAL

FOIL APPEAL

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Asks Cops to Arrest Her Drug Dealer for Touching Her

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:



The complainant says she was inappropriately touched by her drug dealer.”

He says he’s got a problem with drinkin’ and insurance.”

Investigating an odor of burnt food.”

60-year-old male choking. Possibly swallowed a coin.”

Respond for a person burned with hot soup.”

Very obese male throwing clothes off the bridge.”

Man carrying baby out in front of a store, acting like a fool.”

Three males shooting dice in the street and they won’t let the cars go by.”

127 Emerson. Three kids in a box.”

Complainant is upset because a squirrel fell off the roof.”

Female in a car in a parking lot, banging her head against the roof.”

She’s supposed to be pregnant, but she’s actively fighting.”

House party tomorrow night. Attire: bullet proof vest.”

Asked the male if there were injuries. He said, ‘Not yet’.”

“Her stolen car stereo is now installed in a neighbor’s car.”

Screaming and revealing herself to passing motorists.”

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“Kiss me or die!”

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:



Man blew a kiss at the complainant. Complainant didn’t like that. They argued. Man came back with a shotgun.”

Youths dropping lit matches into gas tanks on St. Paul.”

The occupant from the car is chasing the hood across the expressway.”

Pregnant cat in a box near Conrail.”

Frank and Paul aren’t getting along because Frank wants money and Paul won’t give it to him.”

The man with the shopping cart is now urinating on top of the garbage that’s in the shopping cart.”

Suspicious looking footprints in the snow.”

Two gentlemen fighting over darts at Spenders.”

According to the mother, the father was beating the child for medical reasons.”

DISPATCHER: “Long Pond and Lyell investigating kids in the dumpster.” COP: “10-4. Kids in the dumpster. Wear your gloves.”

Complainant ran over an opossum who is still alive and looking at her funny.”

Woman walking a dog in the middle of the expressway.”

Raccoon fell through the ceiling.”

Man’s been drinking for three weeks, requesting an ambulance for detox.”

Male, white, no clothes, covered in mud, walking around the rear of the War Memorial.”

He’s throwing bottles of shampoo all over the store.”

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Let’s Get This Party Started!

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:


The people on the party barge can’t get the boat started.”

The hospital put a cork in his nose, and that’s why it’s bleeding now.”

The jumper missed… and hit the dirt.”

Complainant says he’s been knocked over due to the wind.”

A 325 pound male says the devil told him he was going to die tonight.”

I decided not to arrest him, because I’m a nice guy. But I can go back there and arrest him if you want me to.”

There’s a man laying on the street under a green blanket, nearly hit by a street cleaner.”

Assault. She hit him with rubber cement.”

Woman has a male in her backyard, lying in her hammock. Now sitting in her chair.”

Suspect’s armed with a staple gun.”

She is now pregnant from the 18-year-old sister’s boyfriend.”

Can we get a tow truck? Apparently two guys were racing and didn’t know the road ended.”

There’s bats in the house. There’s no emergency, and police don’t respond to bats.”

A man at the residence pulled the phone out of the wall. He’s demanding they give him 20 dollars or he won’t give them the phone back.”

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“A male driving inside a vehicle.”

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:


A male driving inside a vehicle.”

He’s having dreams that he wants to kill the President and whatnot.”

Man sent to Burger King by a temp agency, got beat up once he got there.”

Person hanging out of a window, person inside holding onto his feet, security watching.”

Suspect in car trying to push over a porta john.”

Male robbed something from the store. Left his shirt and ID behind.”

The squirrel was bitten by a dog, and now the squirrel is running around in circles acting strange.”

Roofers are threatening to tear off the newly installed shingles.”

Current bat policy – you don’t respond to anything, right?”

Suspects took the victim’s pants and boots, leaving him naked except for a hoody.”

Don and Mike are talking about Lonsberry.”

A left eye injury. Injured by a skunk.”

Resident believes someone in the mob is waiting to get him outside.”

Three male blacks dressed in women’s clothing took a 2-liter of Sprite.”

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“Arguments over who drank the last beer.”

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For years, reporters in the WHAM 1180 radio newsroom in Rochester, New York, documented the wackiest emergency calls overheard on the police scanner:


Arguments over who drank the last beer.”

Report of a man slumped over in a car. Slumped over but standing. Chewing on a straw.”

He put items into his pants.”

Three people passed the phone, they all said, ‘Hello,” then hung up on us.”

The suspect has some sort of tail, or hair on his back.”

The neighbor brat is harassing.”

His wife wouldn’t say why she’s doing it, but she’s tearing herself up in the store.”

The man’s got a book and a cane. He’s with a prostitute and they’re having sex.”

She asked the complainant for a few dollars. She’s not wearing any pants.”

Yeh, he’s flappin’ his yap as usual.”

Outside naked, asking for a beer and a cigarette.”

On a bicycle, pushing a lawn mower.”

Male rambling, talking to an officer, something about jail.”

Totally naked in a red sports car.”

Animals on her window. Thinks they’re raccoons because their eyes are glowing. Neighbor saw it, too.”

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