Tuesday, January 31, 2012

Why You Don't See Many Wheelchairs in Restaurants: It's Not Easy Being Disabled

Next time you are in a restaurant, count how many diners are in wheelchairs. I’ll bet the number you come up with most often is zero.
There is a reason for that. Going out to eat in a wheelchair is not much fun.
Even though there are protections for the disabled covered by the Americans with Disabilities Act, the reality is restaurants -- from fast food places to fine dining establishments --  have a long way to go to enable those in wheelchairs to have an enjoyable experience.
Seeing a blue wheelchair symbol at the entry to a restaurant does not guarantee the place is comfortable to disabled patrons.
I remember the first time I visited a local restaurant in a wheelchair. My legs, paralyzed for months after brain cancer, were getting better. But I couldn’t stand or walk.
My husband had driven me to a doctor’s appointment and, in the spirit of my new freedom (I had been hospitalized for more than four months), suggested we go out for lunch on the way home.
He pulled up in the disabled parking space of a restaurant I liked. We noticed the blue accessible sign in the front window.  And he asked the hostess if I could be accommodated in their restaurant.
“Sure,” she said, pleasantly, leading us to a table for four at the back of the facility.

She pulled away a chair and my husband pushed me up as close as I could get. I sat at an angle and because the pedestal beneath the table protruded, I wasn’t very close.  My mouth was at least a foot away from the table. And, when the food came, I could barely reach it. 
To my right, inches away from my shoulder, was the right shoulder of a baby. He was in a high chair at the end of a booth where his mom was enjoying lunch with a friend. 
He had an advantage, though. At least he could sit right up to his table and reach his food.
I was pleased that my husband and I were out dining like we used to,  but I was uncomfortable, in pain and did not enjoy the experience. Going out to lunch didn’t have the same appeal it did.
When I needed to use the public restroom, it was a disruptive production. There was not enough aisle space for me to wheel there discreetly. Waitresses moved out of my path and rearranged chairs. Customers seated at a larger table scooched in or stood up while my husband pushed me by.  And then the whole thing had to be repeated on my return trip. 
I’ve been able to use a walker for the past several years, but it’s often just as difficult to maneuver between chairs and tables.
(And 9 times out of 10, I am seated far away from bathroom. Draw an invisible line from the restroom to the farthest point in the restaurant and that’s where the  hostess will seat me.)
On a recent visit to Phoenix, I went with my sister-in-law to an outdoor lunch place that was a favorite of mine when I lived there. But I was able-bodied back then and wasn’t aware of how handicapped accessible it was. I felt reassured as we easily pulled up to the only handicapped parking spot in front. But once I got out with my  tri-wheeled walker that can ordinarily handle tough terrain, I was sorely disappointed. The gravel and dirt driveway gave way to a spot that should have been named the “Keep Disabled People Out” entrance.
It was as if they found 50 billiard-ball-shaped rocks and cemented them in a rectangular entry that you had to go through to enter the restaurant area.
I’ve struggled over cobblestones in front of some of my favorite hometown restaurants (curse you, cobblestones!), but I had never encountered anything as challenging as this. I can’t imagine how people in wheelchairs or using canes navigate it.
Once we got through the entrance and ordered inside, we went to nearby outside table to dine. It was like a mine field: uneven terrain dotted with dips.
The final insult occurred when I visited the outdoor restroom. It was down a slight grade; a seemingly short distance but again full of holes, some hidden by grass. As I struggled down the slope, a woman commented: “They sure don’t make it easy for you!” 
When I finally got to the restrooms, I found two single unisex ones. Neither had a handicapped accessible sign. The one I picked wasn’t accessible, I learned once inside.
I almost cried. I managed without a bar to hold onto (gripping a public bathroom wall -- yuck) but don’t think I could have accomplished it in my wheelchair days.
When I told this sad tale of what should have been a nice outing in a favorite spot, friends said, “Isn’t that against the law?”
Well, maybe. Depends on how old the facility is. I just won’t go there again. Or to the fine dining Phoenix establishment I visited on another trip that had non-accessible bathroom stalls so small you couldn't close the door if you managed to get in there with a wheelchair or walker. While I am quick to harrumph, I’m not going to file a complaint or lawsuit. But I commend those who do when they face  similar problems.
After a 10-year court battle, a California judge ruled last fall that Taco Bell may have to upgrade hundreds of restaurants in the state to provide proper accommodation for customers in wheelchairs.
Among items the judge found illegal were tables too low to fit customers in wheelchairs, toilets too low and soap dispensers too high. Also the ordering line was too narrow to fit wheelchairs or scooters. A customer could wait on the side and be helped by restaurant staff. But the judge said customers described such an arrangement as “inconvenient, cumbersome and embarrassing.”
Being disabled is inconvenient, cumbersome and embarrassing as it is. I don’t need to pay to dine at places that make it worse.

Monday, January 16, 2012

Hospital Roommate Etiquette: Rule Number Five

In my hospital roommate etiquette list, I have two rules that cover inconsiderate behavior and two that relate to visitors, both human and animals.
My next rule blends both of those topics: Try not to act or have your visitor act in a way that might invite the police.
As with my previous rules, I believe this one would just be common sense, but I know for a fact that some folks just don’t get it. And as the mild-mannered roommate (formerly) in the next bed, I feel a need to speak out.
Rule Number 5. Don’t commit crimes or allow your visitors to make murderous threats.
My first roommate who violated this rule was a piece of work, I knew right off the bat. I couldn’t really see her, but I could hear her well.
I knew she was recovering from surgery. I knew she was a young mother. I knew she didn’t like the fact that doctors wouldn’t give her the dosage of painkiller she was taking at home (red flag). She wanted to be able to go downstairs eight floors and smoke. She once disappeared for hours because she got lost in the parking garage. She would complain about not taking a shower but she was gone wandering when the nurses were helping people bathe. At about 10 or 11 p.m., she would start griping about not being able to take a shower. She never took one.
But she really came unglued when her mom came to visit. Her mother had flown in from out-of-state to help care for her daughter’s toddler while she was in the hospital.
My roommate would constantly berate and argue with her mother. She was angry that mom had made the trip.
“I don’t need your help. Why don’t you just go home?” she screamed. 
I felt bad for the mom, who sounded nice to me. And I felt bad for me, who in addition to feeling physically horrible had to listen to this stress-inducing diatribe.
It all came to a head one day when the patient wanted to leave. She was verbally tussling with her nurses and doctors. Then her mom arrived for the day. I couldn’t see what happened from my side of the curtain, but there was a lot of yelling and pushing and I imagined one of those cartoon scuffles where two opponents are so wrapped up in physical fight that they form a blur. 
Somebody announced she was calling the police.
When the dust settled, the mom left and the patient packed up to go. No police ever showed up.

As the patient was storming around gathering her things, my husband walked in. 
“Here you go,” she said to him. She handed him a paperback about natural health that her mom had brought for her. She came around the curtain to glance at me. “I don’t want this book,” she said. “You guys can have it.”
It was, inexplicably, soaked with apple juice. We told her thank you and accepted the peace offering. I was afraid she might beat us with it if we declined. When she left, I started breathing easier. And the book went directly into the trash.
My other nearly criminal roommate incident also involved a mother-daughter combo. But this one was reversed: the mother was the patient and the daughter was the budding homicidal maniac.
My roommate, who was recovering from surgery, was elderly and didn’t speak any English. Her daughter visited a few hours a day and interpreted as necessary. 
The daughter, who was a bit older than me, marched past my bed daily, never looking at or speaking to me. But one day, she paused at the foot of my bed and we chatted for awhile. She seemed stressed, like all family members of a hospital patient have a right to be, but was pleasant.
But mere minutes later, when a nurse came to check on her mom, the visitor started getting angry about the care her mother had received. Or not received. And the daughter demanded that she released immediately. 
That caused a big hubbub involving meetings with nurses and doctors who advised against it. They assured her the mom had been getting good care.
I silently agreed in the adjacent bed. I had been in the room every minute with her mom. The medical staff had been very kind to her, managed to overcome the language barrier and hadn’t treated her poorly at all. The mom didn’t understand any of this debate and was also quiet.
Meanwhile her daughter was getting louder and more furious.
“This is discrimination!” she said.
Finally, the daughter said she was going to take her mother home.
“And if she gets worse, I will personally come back and kill everyone in this hospital!” she said.
Behind the curtain separating us, my mouth dropped open. I didn’t move or speak, but I wanted to say, in a tiny, calming voice: “Even me? Could you maybe spare me? Remember when you stopped by my bed and you seemed to like me?”
The mom was released. Then a few days later, I was. I assume the patient got better at home because I heard no news of a hospital massacre.
Meanwhile, over the next year, I continued my grueling fight against cancer that included trips in and out of the hospital. I had enough problems without worrying that my nutty roommate or a guest would do me further bodily harm.

Monday, January 2, 2012

What to Say to Someone with a New Cancer Diagnosis

When you hear someone has a cold or the flu, you know what to say. 
But when you hear someone has been diagnosed with cancer, it’s another story.
What do you say? Should you contact the person right away or would he or she prefer to deal with the horrible news alone for awhile?
I’ve been on both sides of these questions: the person getting a cancer diagnosis (twice) and the person who hears that someone they care about has cancer.
The National Cancer Institute estimates approximately 1.6 million new cases were diagnosed in 2011. Behind each of those numbers is a person who is devastated when he heard the diagnosis and untold family members, loved ones, friends and acquaintances who are also shaken.
So how to react? I know every case is different, But here’s my advice.
First, gauge where you are in the patient’s circle of support. On a scale from significant other to acquaintance, where do you rank? 
When I was diagnosed, I wanted to hear from my closest relatives and friends, but I certainly did not need to hear right away from everyone I’ve ever known. There is that initial stage where you are stunned and you don’t really know much and it’s hard enough to process the news. You don’t want the phone ringing off the hook.
If the new patient has a spouse or significant other, use that person as a gatekeeper.  Text or email is preferable to an interruption. Ask if the patient is up to taking phone calls and when might be an appropriate time to chat or visit.
(Warning: this is not foolproof. One friend of mine was told she had to go through a gatekeeper to contact her newly-diagnosed friend, but when she later reached out directly, the patient, feeling somewhat abandoned, was glad to hear from her. Apparently the gatekeeper was self-appointed and not patient-sanctioned.)
Greeting cards, emails and texts are wonderful ways to tell a patient you are thinking of them, praying for them, pulling for them. Say that you are available if she wants to talk or chat via email or Facebook message. Tell her you will lend an ear if she wants to vent or cry. (And don’t feel slighted if you don’t hear back from the patient. It’s sometimes exhausting to be seriously ill. But rest assured the gesture is appreciated.)
My mother-in-law used to send me a card in the mail about every two weeks when I was sick at home. The greeting always brought a smile to my face and let me know, unobtrusively, of her continued support.
I got a lot of cards, flowers and notes. My husband would pass along messages that he received via email. They all meant so much to me.
Hallmark makes cancer-themed cards, available online or in stores for when you don’t know what to say. A card in the mail with a notice of a donation to the American Cancer Society or other specific cancer charity would be lovely. Cancer charities fund research and offer information and support such as rides to chemotherapy appointments. 
Food or take-out gift certificates are always welcome. When you are shellshocked by the diagnosis, meal-planning is low on your priority list. 
But don’t deluge the person with casseroles and greetings. It’s likely to be a long struggle. Cards, food and e-notes of care will be welcome for some time. Here’s my advice on what to say right away:
Say you are sorry to hear the news and you will support them. Say you don’t know what to say.
Look for cues. Cry with them if you must. Sometimes patients could use someone to cry with: sometimes they are sick to death of crying. Sometimes, the patient just wants to hear someone say, “poor baby.”
Don’t ask too many questions. Make your queries open-ended. “How are you feeling?” “What does your doctor say?” or “What’s next in your treatment?” are better questions than, “So what are your odds?”, “Do they know what causes this?” and “Are you going to lose your hair?”
Chances are the patient does not understand any of this yet. It’s shattering to get a cancer diagnosis but it’s also frustrating trying to answer questions when you are a newbie in the cancer world.
Let the patient bring up details. Some people don’t like to disclose much: others find it cathartic to repeat everything she knows. Allow the sick person to be your guide.

Which brings me to another point: The patient needs to be honest and be frank about what is appropriate. It may change as the fight continues.
It’s OK to say you don’t want to speak to anyone or to limit the subject matter. I was out of phone contact for months while I was hospitalized. When I was well enough to be able to speak on the phone, I remember telling my husband one day that I only wanted to speak to someone  if they didn’t mention cancer. The weather, what the caller did the previous day, movie reviews ... anything would be preferable (that day) to the all-consuming topic of my health.
It’s OK not to want to see anyone. During the hospital part of my stem cell transplant, I said no to some visitors from overseas who wanted to come by my room. When I was homebound, friends would drop food at the door without stopping in. That’s what was needed at the time.
Another suggestion: Ask if the patient wants to be put in touch with a survivor. Almost everyone knows someone who has survived the cancer fight. I found such contacts invaluable. The American Cancer Society can help provide inspirational folks to connect with or you could do that for your friend. 
I have often served as a resource. I don’t force myself on anyone, but if they are open to it, I give them what I call my cancer pep talk.
I say I know they feel like it’s the end of the world. And their families probably do, too. But it’s not, I tell them. In fact, there is no better time to get cancer. Research has come so far and medications have improved. Cancers that not many years ago were a death sentence are not any more. Doctors know specifically what treatment to use for which cancer. If plan A doesn’t work, they will attack it with plan B.
It’s scary and difficult and it will be hard on everybody, I say. And then I tell them of  people I know in recent years who have been diagnosed with different types of cancers, including colon, lung, bladder, prostate, breast, and mine, lymphoma. They are all still here.
If you know of inspirational cancer tales, you can offer those. 
Or feel free to use mine.