Yippee! Some Places That Make My Disabled Life Easier (And a Few Gripes)

I’m not always a cranky handicapped person. Some things I encounter in my new disabled life actually make me thankful that a service or accommodation works delightfully well.

I do take note of those when I come across them.

But I also take note of things that drive me nuts, things that make my challenging life even more difficult.

Here are a few of each on my latest list:

The Cayucos Beach Inn: a small, privately-owned hotel in a tiny California coastal community that has the best accessible bathroom I’ve been in.

I’ve been in plenty of accessible hotel rooms and I can say this: You never know what you are going to get. One time I opened the door to find a bathtub right in the bedroom -- not one of those walk-in bathtubs you see on TV ads -- but a regular climb-in tub. I could not get in one of those unless I had a team of firefighters hoisting me in and out. That room also had a roll-in shower in the restroom that suited me just fine. (I was in a wheelchair at the time.)

Other times I find showers that have safety bars, but the shelves for the soap and shampoo are out of reach. Or nonexistent. 

But the Cayucos Beach Inn asked what type of accommodation I needed before I checked in. I said I pretty much just needed railings near the toilet and in the shower. (I can’t stand or walk alone without a mobility device.)

What they gave me was a spacious bathroom with a shower that had to have been designed by someone who was actually disabled. Not only did I find well-placed rails, but the handheld shower wand was at my level. The padded (yay!) shower bench pulled down easily from the wall.

There was a tray at shoulder level (when I was sitting) to hold my soap and little bottles. And the towel was reachable while I was still seated.

I know, it might not sound like much to the abled world, but the combination of all those things was nirvana for me.

The Stander Co., which makes one of my favorite walkers, is not only innovative but dependable and true to their word. I found their Metro Travel Walker online when I was looking for an alternative to the boring walkers that I seemed to see everywhere. 

In a previous blog I discussed the pros and cons on all the walkers I’ve used. My black walnut Metro walker gets compliments everywhere. I tell inquirers to write down the name and look it up on their computers. The walker is lightweight and fashionable. It’s the only one I can easily lift into the car by myself and I take it most places with me. It doesn’t meet all my needs, but it’s close to it.

So I was upset when one of the crossbars broke. I had bought mine from an internet

retailer, so I looked the Stander company up online and called it. I asked if the walker had a warranty, but said I didn’t have evidence of when I purchased it. They told me not to worry, the walker had a lifetime guarantee.

They sent me a new one free of charge immediately. 

When I recently had another minor problem, I called again.They repeated that the Metro is guaranteed for life and they shipped my replacement parts post haste.

This was not what I would consider a high ticket item, (a search online shows an average price of $100). I’ve used other walkers or mobility aids that were more expensive, some were given to me and and one I got for $12 at Goodwill. But if I had a problem with any of them, usually a bent bar or a stuck joint, I just tossed it in the trash and grumbled.

Dream Dinners is a make-it-yourself meal place I was introduced to before I got sick.

I used to go with a friend, where we would spend a couple of hours assembling meals that we could put in our freezer to last the whole month. It was fun, affordable and the meals were always healthy and tasty.

Now that I’m disabled, I can’t make the meals myself. Fortunately Dream Dinners began a Made-For-You program which was fabulously timed with my recovery from grave illness.

Now I order my meals a month at a time online, then I drive to the Dream Dinners nearest me at Granada Hills, Calif. (with my Stander walker in tow).  And when I show up myself to retrieve the meals, a friendly employee happily carries two big bags of meals to my car. 

And for the next month, I can prepare dinners for my family without having to reach for ingredients and stand at the kitchen counter chopping stuff endlessly, tasks that don’t come easy these days. 

Now, a few things I don’t like:

Restrooms with wastebaskets that require stepping on something to open them. People dependent on walkers or wheelchairs can’t do this. I have to grab the top of the can to lift it up and toss in my trash. Eeeuww.

Handicapped parking signs that are directly in front of the space, without a curb as a buffer. I’ve “bumped” many a fence or post with my car as I pulled right up to the sign.

Raised bumps near the handicapped entrance to a sidewalk. 

Usually yellow, they are officially called truncated domes and they are required by the Americans with Disabilities Act to let blind people know when a sloped sidewalk meets a street. But they can cause problems for people with walkers, canes or wheelchairs. I’ve read reports of people who have fallen from wheelchairs and been injured. And people with spinal cord injuries can go into painful spasms trying to cross those bumps in their chairs.

I agree with the person who wrote a blog post for California’s Assistive Technology Network  suggesting a compromise -- maybe some smooth spots can be interspersed near the truncated domes for those who are physically disabled.

One of the most popular strip malls in my community has a front row of numerous disabled parking spots (yay), but then a field of truncated domes and cobblestones to get to any of the establishments (boo). Nowhere is there a smooth path as an alternative.

Among the businesses in the mall are a massage place and a yoga studio. For disabled people to get to either of those therapeutic places to relax, they first have to cross a wide sidewalk that is guaranteed to rattle their brains and stress them out. And then exit the same way. 

Bottom line about things that make on my thumbs up or down list: for us handicapped folks, they might make us return customers. Or not. One of the stores in my local shake-your-brains-out strip mall was a specialty grocery store that shut its doors not long after opening. Had it provided a smooth entrance that I could navigate easily with my Stander-walker-thrown-in-the-shopping-cart routine, I think its days wouldn't have been so numbered. I would have spent gobs of money there. And I'm not alone.

Should You Call Me Handicapped or Disabled? Let Me Be The Judge

I call myself “handicapped." Sometimes I say “disabled."

But that sounds more serious and permanent while, to me, “handicapped” sounds a little gentler.

It doesn’t change my situation.

I came out of my horrendous battle with cancer alive. But as a result of what I went through, I cannot walk or stand unassisted and must use a walker or mobility aid at all times. My balance is shot, my bladder is screwed up, my back hurts like hell if I sit or stand for long. I can barely feel my toes and have stumbled and taken serious falls three times in the past four years. I am virtually blind in one eye, so it crosses inward. I have lumps on my forehead where doctors cut into my brain. And I’ve got scary scars on my arms where the skin, weakened by steroids, was ripped off by bandages.

This is my harsh reality. So indulge me if I don’t use what I consider the harsher word -- “disabled” -- to describe myself.

It is not correct, journalistically. But then I’m not a reporter anymore, so I don’t have to adhere to style rules. I can just write what feels right, no matter if it is proper or politically correct. 

In some 30 years writing for newspapers and magazines, I had to abide by style guidelines. The Associated Press Stylebook was my bible, intended to create uniformity among newspapers and media throughout the country.

Should I use “gray” or  “grey?" Gray is the preferred spelling when you write for a newspaper. “Cactuses” or “cacti?" Believe it or not, it’s cactuses. 

That doesn’t mean everyone needs to speak or spell like that in the private lives. In my professional life, though, I had to conform.

One year ago, I began publishing my blog. I was finally able to sit long enough at the kitchen table to put down my thoughts. I called it “View From the Handicapped Space” because I believed I had a lot to share from my handicapped perspective.

But I learned that “handicapped” is not the preferred way to refer to people like me. When I bought a new AP Stylebook to help me with my writing, I found out I had already broken the rule about writing about people with disabilities.

Here’s what it says: “handicap It should be avoided in describing a disability.”

The National Center on Disability & Journalism, which is housed at Arizona State University in my former hometown, offers a style guide specifically to help writers compose stories about people with disabilities. I applaud the purpose but I don’t embrace some of the rules.

Here’s what the center says about the terms handicap and handicapped: “These words should be avoided in describing a person but are appropriate when citing laws, regulations, places or things, such as ‘handicapped parking’ ”.

And Ability Magazine also says writers shouldn’t use "handicapped” when referring to a person. 

“Handicap describes a barrier or problem created by society or the environment....For example 'The stairs leading to the stage were a handicap to him.’”

“Disabled or disability," the NCDJ says, refers to “functional limitations that affect one or more of the major life activities, including walking, lifting, learning, breathing, etc.”

I’ve got those. And I’ve encountered all sorts of stairs and steps that were a handicap to me. But I still prefer to be called handicapped. Disabled sounds so final. Handicapped has a hint of hope to it: maybe someday I won’t be so handicapped.

Perhaps it’s all in my chemo-brained mind, but that’s the way I see it.

I do alternate between “handicapped” and “disabled” in my blog posts just to vary the language. It’s not AP style, but it’s a basic rule of good writing. I also disagree with or have violated a few other guidelines suggested by The AP Stylebook, NCDJ and Ability Magazine.

They say it’s never OK to say someone is “confined to a wheelchair” or “wheelchair-bound.”

“It implies a judgment,” says the NCDJ. Instead, use “person who uses a wheelchair."

“Wheelchair-bound” suggests the opposite of what the chair does: “It enables a person to be mobile.”

Well pardon me, style-makers, but when I was in a wheelchair for months I definitely felt wheelchair-bound and confined. I had to propel myself around, learning quickly how worn your hands can become when you are pushing the wheel around. And how difficult it is to steer yourself up or down a slight incline.

When someone pushed me, he or she had to tilt me backward and forward to go up and over doorways and curbs and steps (which I HATED). To relieve myself when I was in bed, I had to call someone to lift me to a bedside commode and back to the bed. I used a sliding board to get in or out of the passenger seat of a car, a difficult task made nearly impossible if that car was a high profile vehicle.

To get into my wheelchair from my bed, I had to be lifted by someone or use my sliding board, a rectangular transfer aide. I missed my twin sons’ high school graduation because although I had a special pass from my rehabilitation center, I needed to be transported in a van that could carry a high-profile reclining wheelchair. Finding one that could pick me up at the hospital and drive me home turned out to be nearly impossible and prohibitively expensive.

If my expressions of what I went through puts a negative spin on wheelchairs, so be it. There was no source of freedom in mine for me.

I also feel similarly about the style suggestion that we should avoid saying someone was “stricken with”, “a victim of” or “suffers from." 

From the NCDJ: “These terms carry with it the assumption that a person with a disability is suffering or living a reduced quality of life. Not every person with a disability “suffers”, “is a victim” or is “stricken.”

Granted, not everyone is.

 But I sure was. I certainly suffered (as did my family and friends). I was absolutely a victim and I was not only stricken, I was broadsided, beaten down and paralyzed (for a while) by lymphoma. And while I am ever thankful that I came out of it OK, I definitely have a reduced quality of life.

If I ever write for publication again, I will adhere to the style guidelines. Those are the rules of the game. But for now, in my blog, I will tell the truth the way I see it, politically correct or not. 

KEEP OUT: When It's Not OK to Use the Disabled Stall in a Public Restroom

After a week on a road trip, I’m sick of public restrooms. From rest stops to restaurants, you never know what you’re going to find. That goes double if you are disabled.

Very rarely am I pleasantly surprised. It happened on this trip in Scottsdale, Arizona at the Barrio Queen. The women’s restroom there has two stalls and both  (BOTH!) are handicapped accessible.

Hallelujah! Cue the heavenly choir.

The restroom was empty when I entered it. So anyone could have picked either stall, regardless of their abilities.

But I’ve really had it with insensitive people who insist on taking the only accessible stall in the room. I believe a refresher course is needed on when it’s OK to use the handicapped stall if you are not disabled.

Well, not a course. Just a rule: You may do so only when other non-accessible stalls are occupied and only when you haven’t seen a disabled person nearby.

Some handicapped stalls have changing tables in them, so mothers with infants are exempt from this rule. (Although I prefer when the table is outside the stall so moms don’t tie up the disabled toilet for what’s guaranteed to be a long time.)

Before I became disabled, I would occasionally use a handicapped stall. But only when all the other ones were taken and only when there wasn’t a disabled person to be seen.

But now that I am forced to use accessible stalls, I really don’t understand the rude behavior I’ve seen behind ladies’ room doors. 

I am by nature a nice, trusting person. But some gals, albeit a few, are really testing me.

Once, during another road trip across the desert to Phoenix, my husband and I stopped at a rest stop. It was hot and windy that day. And from the disabled parking spot to the ladies room, it was an uphill walk. 

Not a steep incline, but anything other than flat, to me, seems like a mountain climb. 

My husband got my “good” walker out of the trunk -- a triwheeler that performs well on asphalt. I crept my way up the walkway in the wind and the heat. When I was getting close to the entrance,  a woman passed me and walked in the door.

“Hope she’s not taking the handicapped stall,” my husband said. He’d been around me enough to know that this sometimes happens.

No, I told him. Why would she? She was perfectly abled and she could see I was struggling to get to the bathroom.

But when I finally got inside, I found she was in the only accessible stall in the empty room. There were two others, but I couldn‘t get in them.

Here’s the deal: It’s not that we disabled folks just love the spacious stalls with the extra hand railings. Those are the only ones we can fit into with our walkers or wheelchairs. And those are the only ones where are able to get up off the toilets. 

Now I’ve occasionally run across abled women who emerge from the disabled stall and apologize immediately to me when they see me waiting. A couple have said they prefer those stalls because the toilet seats are higher and they like the hand railings.

Others won’t look at me.

I forgive those who offer apologies because I wasn’t there when they entered the restroom.

But I have no patience for those who walk by me or see me and take the accessible stall for themselves.

It happened again last week on our way back across the desert. 

My daughter and I had stopped at a truck stop, trying to avoid the flies we found on the toilet seats at the last rest stop.

We walked a long way into the establishment to find the restrooms around the corner. Inside the women’s room were six empty stalls, one of them accessible. When I paused to get something out of my purse, an able-bodied woman walked in, passed me in my walker and entered the handicapped stall.

I had to wait until she was done. I couldn’t fit into the other five stalls.

When she came out, she avoided looking at me and walked straight ahead to the sink to wash her hands.

When I got inside the stall, I found she hadn't even flushed the toilet.

Since I was diagnosed with cancer seven years ago, I have had plenty of infuriating, embarrassing moments. Most of them involve tests and hospitalizations and my  battle with lymphoma. And while I am always one to put a positive spin on things, I do not appreciate being inconvenienced by rude, inconsiderate people.

We can have all the Americans with Disabilities Act guidelines in the world in place to make life easier for the disabled. But it only takes one ignorant person -- someone who parks in a disabled space when he doesn’t need it or a non-disabled woman who hurries past me to nab that handicapped bathroom stall -- to ruin things.  

Disabled people don’t deserve this. I don’t deserve this. It’s hard enough trying to get through the day with a smile on my face, not cursing the cancer that attacked my brain and left me unable to walk unassisted.

Jennifer Longdon, a brilliant Arizona blogger who advocates for the disabled, wrote that the miracles of disability are found in “those who learn to live average lives in trying circumstances. Those who find grace and courage everyday to face a world that is inadvertently hostile to their existence.”

We don’t need thoughtless people making our lives worse. 

 

Beware of Care Facilities that Just Don't Care

Last week, my husband and I celebrated our 31st wedding anniversary.

We marked the day in a fairly routine style  -- exchanging mushy cards, going out for a nice dinner. But we’ve added one tradition to our anniversary celebrations over the last few years -- remembering our Worst Anniversary Ever in the Worst Nursing Home Ever.

It was our 25th, an important milestone. We had planned a vacation for this, but when I became gravely ill with cancer, those plans went out the window.

Instead we spent our big day in a dirty, depressing place filled with antiquated furnishings and equipment, pathetic patients, an incompetent staff, one incredibly rude doctor and nearly inedible food.

My husband bought red roses from a street vendor on his way in to see me that day and placed them on my nightstand. 

The sweet bouquet brought a tiny piece of happiness to a sorry facility that opened my eyes to how we care for those of us who are older or infirm. 

As a cancer patient, I felt powerless to control where I was sent to wait for my next session of chemotherapy. I wasn’t sick enough to be hospitalized, but I needed rehabilitation, because part of the lymphoma in my brain had left me suffering from paraplegia. So I was pretty much at the mercy of the placement people at the hospital where I had been for months.

The primo rehab place, at the hospital where I had stayed for months, had no open beds. So they transferred me to a nearby skilled nursing facility (SNF).  These days, what used to be called a nursing home is now referred to as a “sniff” in old and sick people lingo.

My son nicknamed it Sunshine Meadows, a name he imagined the facility might have called itself to convey the idea it was a semi-happy place. (Disclaimer: This one was in Los Angeles and was not related to the real Sunshine Meadows in Kansas or any similarly named place.)

It was a hellhole.

I was transported there via ambulance. When I was wheeled in on a gurney, I passed through an entry area full of grim-looking old folks in wheelchairs, staring into space.

My two roommates were ancient and miserable-looking and didn’t speak. (One spoke her own made-up language.) There was one small TV high in the center of the wall and no telephones.

My bed was inches from a ground level window. The windowsill was covered with dead bugs.

I was there for a little more than a week. By the time I left, I was throwing up, had a high fever, bed sores and a urinary tract infection.

Here’s what I was happy to leave behind:

OUTDATED ROOMS AND EQUIPMENT 

My room was overcrowded and the bathroom was filled with storage boxes. One visitor could sit on a chair while another visitor sat on my wheelchair in the bathroom doorway.

The hospital beds weren’t electric. Someone had to physically turn the crank at the foot of the bed to raise me up and turn it again to lower me. Because I was in excruciating pain when I wasn’t flat, I had to be raised and lowered at least three times a day for meals -- a chore the nurses seemed to detest. 

CRABBY, LAZY STAFF

It felt like the nursing staff hated Sunshine Meadows as much as I did. A good nurse can just make your day when you are at your lowest. But these guys made it seem like I was causing them to have the worst day of their lives. Sorry, I felt like saying, I have to ask for a bedpan. Or, sorry, I want you to lower my bed. Sorry, I’ve got a question for you. They didn’t bathe me or change my sheets regularly.

After I switched rooms to one that had a pleasant roommate, one of the nurses used to plant herself on the chair in our room -- “the nice girls” she called us -- so she could avoid having to care for others. Or us.

When my husband went to the nursing station down the hall to ask a question, he said he found a station of mass confusion, alarms going off, no one paying attention to anyone and one wobbly elderly guy my husband caught and put in a wheelchair.

HORRIBLE CARE AND HYGIENE

At the hospital, because I couldn’t turn myself over, staffers would regularly help me turn every few hours. Here, no one did.

When you are catheterized like I was, nurses are supposed to empty your urine bag routinely. Seems like Nursing 101. But when I noticed a putrid smell coming from beneath my bed, a visitor said the bag had overflowed. After the nurse was summoned, she emptied the bag and called someone to clean it up.

“I don’t think that smells like normal urine,” I told her.

“Yeah, sometimes it smells like that,” she replied.

“Do you ever test for urinary tract infections?” I asked. At the hospital they would check routinely for that because catheters and hospitals often result in a UTI.

“Yes,” she said. 

But they never did.

In my second room, I noticed my urine bag had again flooded the floor by my bed, so I called a nurse.

“No, it’s just the shine on the floor because it’s so clean,” she said.

Good try.

ONE UNBELIEVABLY AWFUL DOCTOR

When I entered Sunshine Meadows, I didn’t have any medicine with me. I assumed they would just transfer my prescriptions so I could resume my regimen. No, they said, they couldn’t give me anything until I had been seen by their doctor.

He would be seeing me within three days.

Because I was a huge doses of steroids, among other things, there was not to be any disruption in any of my meds. My husband, who had consulted by phone a doctor who had previously seen me, told that to the nurse, who relayed that to the doctor over the phone. No, the doc said, he would see me in a few days.

When my husband later complained again, the nurse handed him the phone so he could try to convince the doctor. When my husband said that my personal physician was strongly opposed to this, the doctor hung up on him.

I saw him on the third day.

FRIGHTENING AMBIENCE

Meals were a horrible adventure. You couldn’t pre-order food and you had to eat what showed up. Much of it was unidentifiable, appeared to have no connection to nutrition and lots was covered with pink granulated sugar.

The facility had an outdoor courtyard but it had been turned into a popular smokers’ lounge for staff. So if you wanted to get away from the depressing interior, your only choice was an equally depressing, potentially lethal courtyard.

Then there were the overly loud patients. One screamed his brains out every night. Another sang at the top of his lungs all day long in the hallways.

On the day Sunshine Meadows began to test fire alarms, I started thinking I was in a “Punk’d” SNF episode. A place really couldn’t be this bad: Poor care, horrible conditions and hours of deafening alarms?

But it was. When it came time for my chemo session, I was transferred back to the hospital where the staff there treated me with care, tested my urine, cleared up my infection and began a months-long process of soothing my bedsores.

As happy as I was to be out of there, I still couldn’t help thinking of the patients who were still there, trapped in misery. Did they have family members? Did they visit the place ahead of time? And here’s the worst part: On a scale of SNFs, Sunshine Meadows was probably better than most. 

It was a sad place to celebrate my 25th anniversary. But it’s an even worse place for the sick and elderly to live out their lives.