January 30, 2008
A Salty Local Custom
My brother, who lives in North Carolina, comes to visit sometimes. He has been in a wheelchair since a car accident at the age of 18 (he is now 63). When I spend time with him I am humbled by his amazing serenity in the face of constant obstacles such as the ones you mention. To name a few: yes, the inaccessible restaurants, and bathrooms in those restaurants and other places in the city. Also, people who park or stop in front of curb cuts so he can't get up or down. People who won't get out of the way as he is coming towards them on the sidewalk. And the constant staring as though he is a freak. The hotels offering handicapped rooms, when he can't even get his wheelchair in the bathroom. I must confess that I cannot imagine being so patient and calm in the midst of constant barriers. My anger and frustration are almost incontrollable when I share these frustrating situations with him. But, my brother does not complain about these injustices.
The only thing that really bothers him, though, is the spit. I asked him why the spit. He said it gets on his wheels and then on his hands.
The Disability Rag
"Hi Dan, the message on my voicemail began. "This is Beth Sutter... I really appreciate your article, your commentary, 'Philadelphia is a rough ride for wheelchair users.' I thought you were very intentional in using the word 'wheelchair user' as opposed to 'wheelchair-bound' or someone being 'in the wheelchair.' "
How did I know a but was to follow?
"I wondered if you would also consider being intentional about avoiding phrases like 'the disabled' or 'the handicapped.' I have the same response to the words 'the homeless.' Just because I find those words distancing. As if the person is 'other.' "
I called her back. Yes, I said, I was deliberate in saying "uses a wheelchair." This is because I used to live in Louisville, and back in the '80s a very feisty magazine was published there. They called it The Disability Rag.
And rag they could.
I will never forget the note I got from a woman there when I thoughtlessly wrote someone was "confined to a wheelchair." That turned out to be one of the Disability Rag editors' least favorite phrases.
Confined? As if the wheelchair is a prison?
I got the point. But I never thought that saying something about the disabled is not as good as saying something about disabled people. In fact, apparently I did it twice in Monday's column. Now that I think of it, it's a fair point.
Sutter and I talked for a few minutes. Turns out she's second cousin to Bruce Sutter, who I used to watch pitch at Wrigley Field in the late '70s during the reign of the Grubby Cubbies.
She is 52, and has been a disabled person since 1991. Her spinal stenosis makes it extremely painful to sit. "It means I cannot use a wheelchair. I use critches. I've pretty much been in bed since June."
She was an occupational therapist. "I miss it a lot," she said.
I'll think of her next time I try to make a noun out of an adjective.
January 29, 2008
The Inaccessible Suburbs
Monday's column on Cliff Roberts' wheeling his chair through The Inaccessible City caused my phone to ring enough to think I'd hit a nerve.
"It's just as bad in the suburbs," said Barbara Quinn, 60, of Aston in Delaware County. She started by ripping into the nice man at her hair salon -- a brand new place in an expensive building.
"When I went in there, the first time after it was completed, the owner said to me, 'How do you like our building? It's all handicapped accessible.' " The owner proudly noted the elevator for those who can't climb stairs, the bathrooms with rails for those who need to support their legs.
All great, Quinn replied.
If only she could get in the front door. No automatic doors.
The owner said the township didn't require that.
So Quinn, who suffers from multiple sclerosis, has to drag her husband along to the beauty parlor or wave until someone sees her and lets her in. Which is not comfortable to her. The hardest part about her being in the chair, she says, is emotional. She doesn't see herself as someone who has to rely on others.
"I've learned, I guess, through this disease that I have to swallow my pride and ask for help.
"The only place I love shopping is Kohl's. They are a delight. They have automatic doors. Their aisles are wide. And they have a mannequin sitting on a pedestal and the mannequin is disabled. It's the only place I've seen that."
Other places make her feel belittled. Belittled by doors in the ladies room that she cannot open from the inside, and so she must wait for the kindness of strangers. And they are kind, she says.
Nicholas Vincent Siravo wonders where those nice people are. He lives in the Wissinoming section of Northeast Philadelphia.
"The whole world is out to get people in electric mobility carts," says the 61-year-old retired printer with a host of maladies including diabetes, cancer, a heart condition, broken back vertebrae and two artificial knees. "We’re the freaks of the world. People don’t like us. We’re in their way. They have to open doors for us. They have to move aside for us."
He had so much trouble pulling open the doors to the bank in his neighborhood, he says, that he started using the drive-in window.
Until an employee came out screaming that they didn't have insurance for that, and he had to go inside.
He said he got tired of waiting for someone to see him and open the door, so he complained.
They put in a bell.
But even that didn't help.
"You ring it and you ring it. They look at each other, 'Aren’t you gonna get it?' "
Some callers or e-mailers groused about perfectly able people hogging handicapped parking spaces. One caller, a former police officer whose son is disabled, said he used to love writing up those who abused these precious parking spaces.
"It's tough all over," Quinn said. "Restaurant owners, shop owners should stay in a wheelchair just for one day and they they'd see the challenges that you face."
Josh Winheld, who like Roberts suffers from a muscle-atrophying illness, expressed by e-mail his frustration with uneven curb cuts, which make it hard to navigate his wheelchair.
That thought was seconded by Arlene Halpern, of 15th & Locust in Center City. She said her wheelchair-bound husband cannot travel 50 feet south without hazarding his health trying to get off and then back onto the sidewalk at Sydenham Street.
"The ramp on both sides have crumbled," she said. It's almost impossible to go through on a wheelchair, and when it rains, the water collects and it takes a couple of days to drain." That complaint about curb cuts I heard from three wheelchair users.
This called for a field trip, so at lunch I walked down to the intersection, and found the ramps to battered -- an pocked slope of granite and stone and macadam roughed up by a steady tide of heavy traffic.
Halpern said she's called a councilwoman twice since October. She was told that the cold weather makes immediate repair unlikely.
Halpern, who moved into the city from the Main Line a year ago, said she'd like to join an advocacy committee for the disabled. She was hopeful the new mayor would welcome her input. Mayor?
"Here in the snootiest neighborhood in Philadelphia you find dilapidated streets," she said. "No one is immune from The Treatment. I'm all for fixing the infrastructure."
Looks like we take another bite of this Thursday.
Can we hear from some business owners? The difficulty of working with historic properties? The logistical hardship of narrow properties in the old city?
If this were New York there would be a form we could send when we encountered something inaccessible.
December 06, 2007
Now THAT'S Disgusting
Maybe you read today's column about the Neti Pot and wondered, 'just what was that video like?'
August 12, 2007
Ooh La La
A Boston Globe op-ed piece explores why the World Health Organization ranked France as the earth's best medical-care system. (We're No. 37!)
You thought I was going to post a picture of some French bone-sawer?
A similar system would require drastic changes here -- med school would be free, malpractice judgments would shrink, insurers would lose much of their power and have to let go those nice people who don't understand our problems when we call.
Doctors there make only twice as much as the average worker; here it's five times as much. The French are famous for their red tape. But this system is far less bureaucratic than the one we have here, says the author/professor Paul V. Dutton. And the WHO report that the French live longer, happier, healthier,
January 24, 2007
The Face of the Uninsured
Read this post from Scott Wisniewski, written in Young Philly Politics, about the day he found himself terrified, near collapse, at the doctor's office.
He's not sure what was more frightening: a possible diagnosis of mono, or the receptionist presenting him a bill for $80.
He had just moved to Philadelphia, having left college and its health care coverage, with enough money saved to pay the deposit on his lousy apartment.
He wrote yesterday:
For the first three weeks I lived in my unfurnished hole, I subsided on ramen noodles and a cabbage. Why a cabbage you may ask? I accidentally mistook it for lettuce and couldn’t afford to throw it away. I did quickly find a job working retail in a small store downtown making 8.50 an hour and working 45 hours a week, I worked a second job in the winter so I could buy Christmas presents for my family. It’s not a sob story, I don’t think, I lived within a community of people my age who were in the exact same situation, working retail, and pursuing other goals, just trying to make ends meet. There were so many of us that it seemed almost normal to not have health care. Looking back, I realize it affected me in more ways than I knew.
Within months of ... moving to a new city I was sick. I had terrible allergies, and my dry, dusty apartment didn’t help at all. When the weather turned colder, I caught some sort of mutant bug that wouldn’t go away. For nearly two months, I lived in a state of virtual exhaustion, feeling congested, getting frequent headaches, and altogether beaten up. On the very rare occasion of a day off from work (which usually came every 14-21 days) I would sleep for literally 15 hours.
Finally, in late February, I decided that I would go to the doctor even though the bill would nearly bankrupt me. I went in hoping that he would find something wrong with me, but terrified that I couldn’t afford the medication to make it right. When I did finally get there, after a thorough exam, he said that he couldn’t find anything wrong, but he thought it necessary to test for Mono. Realizing that I could barely afford the “February Blues” diagnosis that he eventually gave me, I knew there was going to be no Mono test. As I sulked my way to the office door the Receptionist informed me that my bill for the visit would total $80! I can’t ever remember a feeling of being so thoroughly sunk. I almost broke down in the office; I was still sick, exhausted, terrified of the suggestion of Mono, and would have to either bounce a rent check or find a way to avoid paying this bill immediately. The receptionist must have sensed my desperation and with a hand on my shoulder told me that she could put the bill in the mail, delaying the inevitable confrontation with my depleted bank account. How embarrassing; I’m nearly crying over an $80 doctor’s bill and still have no clue why I’m sick. Oddly enough, that bill never showed up at my door, and when I called the doctor he pretended he never treated me. I still get a knot in my stomach thinking of the generosity of that Doctor (or receptionist), but cannot help but feel a little resentment for having gone through it at all.
I feel fortunate to have survived that period of my life without serious illness or injury, (that I am aware of). A broken arm or even bronchitis would have been financially catastrophic. But I did incur small injuries that I couldn’t afford to treat. The stubborn discomfort in my hip that never really healed, colds that wouldn’t subside, the untreated flu, a stomach virus that eased minutes before acceding to both dehydration and an emergency room visit. During the summer of 2002 when I got pink eye and spread it to my girlfriend (also without health care), she had to participate in an independent medical study to get eye drops, and then used them on both of us (luckily we didn’t get the placebo). I still worry that because these things weren’t treated immediately that they will have long term effects on my health.
Only adding to my stress is the mental strain associated with not being able to diagnose a problem when it arises: strange looking veins on my leg that I spent months worrying about, mysterious chronic headaches, and heartburn all became the worst diagnoses in my mind and there was little I could do about it but hope it disappeared. For all of these aches and pains, I actively sought home remedies that I could afford; herbs, aroma therapy, and diets with varying results. In the end nothing can supplant proper health care. There is no amount of library books, Google searches, or asking friends of friends (who may or may not be a nurse), that one person can do that will give you the same relief as a diagnosis of a certified medical doctor. I feel fortunate that I was able to stay out of the Emergency Room. But it was only that, luck, and I spent nearly 5 years fearing the ramifications of a possible injury or illness. There is something inherently wrong in a system when a person fears the emergency room more than they fear the emergency. I can’t think of addressing a more important political issue.
Eight months ago he found a job with health care benefits. Until that point it had been five years since he'd seen a doctor or a dentist. He still hasn't seen a dentist, for fear of what they'll find.
December 13, 2006
Ok, hands down, favorite post of the day:
Soy makes you gay.
World Net Daily, a conservative Christian site, ran a column yesterday by Jim Rutz called the Big Picture. It begins:
There's a slow poison out there that's severely damaging our children and threatening to tear apart our culture. The ironic part is, it's a "health food," one of our most popular.
Now, I'm a health-food guy, a fanatic who seldom allows anything into his kitchen unless it's organic. I state my bias here just so you'll know I'm not anti-health food.
The dangerous food I'm speaking of is soy. Soybean products are feminizing, and they're all over the place. You can hardly escape them anymore.
This "slow poison" is shrinking the size of the penis, he writes. Soy, he adds, commonly leads to sexual confusion and homosexuality. In fact, that explains today's "rise in homosexuality." Soy.
He adds a p.s. Soy sauce is fine. Same with miso, natto and tempeh. But watch the tofu.
As you might guess, this post is getting around.
John Amato at Crooks and Liars worries, having just added a little soy milk to his coffee.
Andrew Sullivan at Time headlines his post Threatdown: Tofu!
The Raw Story takes it seriously, seeking to debunk the under-lying science by linking an Atlantic article that showed homosexual men had more testosterone than non homosexual men.
The libertine Right Wing Nut House shares everything we wanted to know and more in a post titled, "Soy in the Boy Gives Him Curls Like a Girl:"
I’m waiting for the study which shows all these effects are reversed by cigarette smoking. That or living a dissolute lifestyle. Or maybe even taking a rabid interest in sports. The reason being, I was raised on soy milk myself and do not suffer any of the effects mentioned in the article. But I smoke, liked to party down in my youth, and have had a lifelong passion for baseball and football. I wonder if any of those activities saved my masculinity from a fate worse than death? The last time I looked, my penis was not stunted. On the contrary…
(brilliant artwork by People For the American Way)
December 01, 2006
When Being Positive Isn't That Great
Seriously folks, I understand the anxiety associated with an HIV test. One of my first thoughts when I found out I was positive was "at least I never have to take another one of these awful HIV tests!" Trust me, I get it!
But I also know the empowerment that comes with knowing your status. Nowadays you can get a rapid result test and know the dealio within 20 minutes.
Danny Schechter, the News Dissector, writes:
It's World AIDS day again, the 25th Anniversary of the First reported AIDS Case and for the 25th time, a quarter of a century of this devastating disease/pandemic and we still don’t really know how it started or how to cure it. Talk about fatigue, talk about people tuning out, talk about a failure on the part of the media to keep the issue in front of us and the failure of the world’s governments to confront it effectively.
October 05, 2006
Easy Does It
The kids are on a plane without us for the first time, I've got to pay to two college tuitions next year, we have a giant puppy who isnt entirely housebroken, the sink is clogged, the van is old, the house needs painting, the driveway needs resurfacing, the kids are on a plane ...
But if I had a cup of black tea, everything would be ok, British researchers say.
At least I would feel less stress.
June 13, 2006
No Steak or Cream Pies?
The down side? You have to consume 17 a day for it to be effective.
More evidence that Woody Allen was right in Sleeper.