Please, Please Grant my Springtime Wishes so Disabled Folks Like Me Have an Easier Time

It’s the beginning of spring, a time for new beginnings and a fresh approach. It’s not the start of a new year, but it’s never a bad time to make resolutions.

Here are a few I would like you - the public - to make to improve lives of people who are disabled, like me.

1) Toss out step-on wastebaskets in public restrooms. I get that it’s a nice way to hide the refuse, better than the often-overflowing open bins, but there are other models that do the same. The receptacle with a swinging lid or one with a cover with a hole in the middle are way preferable. There is no way a walker-user like me or others who use wheelchairs can step on levers to open a trash bin.

I thought this was small

until I saw this one

And I’ve seen shorter ones that serve no purpose whatsoever. Whether large or small, they are impossible for me to maneuver.

My only option is to pry the lid open with a finger (eliminating the sanitary benefit of a no-touch trash can) or to carry used paper towels around until there is an appropriate time and place to dispose of them. I can’t count how many times I’ve hidden used paper towels in my walker and found them a few days later. 

2) Restaurants need to make sure disabled patrons can get around comfortably. Before owners place a wheelchair sign in the window indicating their establishment is ADA compliant, they need to visualize people using walkers or wheelchairs coming to your business. Would they have a clear path to get by? I remember when I was home after more than four months in a hospital bed during my cancer journey, my husband had taken me to a doctor’s appointment. On the way home, he suggested stopping for lunch. Woo-hoo, we thought. We can do this because I am out of the hospital and have the freedom to dine spontaneously. I was using a wheelchair at the time. Once we opened the door to the restaurant, my bubble burst when I saw a maze of tables and chairs packed closely together. Our server rearranged some tables so we could get to one that worked for us. I was sitting at an angle at the edge of one, because there was no room to to fit me in the correct way. I was inches away from a baby in an attached high chair at a nearby table. When I needed to use the restroom, I interrupted a large group of diners who had to stop eating, stand up and push their chairs out of my way so I could get by in my wheelchair. And I had to disrupt them again on my way back to the table.

I have interrupted many a meal over the past 20 mobility-challenged years. Often, my husband or friend will lead the way, tapping on shoulders of diners. When I go out to places like this, I use a collapsible walker that can squish together like an accordion to help me squeeze by. Even then, it is very challenging to maneuver (my purse often gets in the way.) And I feel bad for those who use larger, non-collapsible walkers or wheelchairs. It’s enough to make you want to stay home.

3) Include some smooth tracks inside those yellow or blue bumpy things you find  at entrances to establishments or sidewalks. They are called truncated domes and they are required to let visually-impaired pedestrians using canes know where the curb cuts are, where the sidewalk begins and ends. I get it. But I also find them a big challenge for me and others to maneuver - particularly if they are on slanted ground. (I find no uniformity here. Some are flat, some are at a manageable slant and with others, I need help ascending and descending)  A friend who uses a wheelchair says rolling over them gives her back spasms. In my hometown, a few of my favorite restaurants and a couple of my doctors are located in a shopping area that has plenty of disabled parking spots with a solid line of truncated domes bordering a large cobblestone entryway. I cannot easily walk on uneven surfaces, so traversing the one-two punch of domes and cobblestones exhausts me before I get to the entrance of where I am going. I used to get massages at a place there, and the rough exit would rattle my brain and my muscles, undoing the relaxation I had achieved  on the massage table

My solution to the domes? Instead of a solid rectangle of the little yellow demons, include two lanes of smooth pavement roughly walker legs or wheelchair tires apart.

That way, blind people could find their way safely and pedestrians using canes, walkers or wheelchairs could stick to the smooth tracks and have an easier time getting around. 

4) Before you declare your establishment as ADA compliant, imagine if you used crutches or depended on a walker or wheelchair to get around. Maybe you wouldn’t describe in an online guide Ponto Beach as the most accessible beach near Carlsbad CA. “(Ponto) is your best bet for true accessibility” featuring accessible parking, accessible restrooms nearby, “plus stairs from the campground leading down to the beach.” You know beach-goers who need accommodations can’t use stairs, right?

And maybe you wouldn’t put a wheelchair accessible sign outside a hotel room

A room is wheelchair accessible

but not if you want to bathe.

that has a completely inaccessible shower/bathtub or cram the furniture together so tightly in another “accessible” room that I could barely walk around even with my squeeze-together walker. A wheelchair user would be out of luck.

5) If you are a theater operator and have a patron who buys accessible season tickets annually, remember that if one of the plays is being staged in a venue different from its usual one, your patron is not suddenly going to become able-bodied. Meaning YOU HAVE TO ASSIGN ACCESSIBLE SEATS for her in the other performance space as well. For years, I’ve bragged about how wonderful my accessible seats are at my favorite Los Angeles theater venue. The staff is so kind and the plays are always entertaining. Years ago, one of the shows I attended was at the smaller, adjacent space. I sat behind the orchestra section in a row for disabled people on the main floor - which I got to via an open-air lift, which takes the place of elevators. Bravo.

But I had a horrible experience recently when one of the plays was staged at that same smaller space. I didn’t bother to check where my seats were - expecting the same accommodations as I had several years ago. When my friend and I entered the lobby, we were asked if we needed help to our seats. Yes, we said. One of the ushers said we should find Tommy when we were ready to go. Tommy led us to a lobby level door - which didn’t bode well for me because the orchestra section was on the ground floor. I reminded him that I couldn’t go down steps. We got closer and he said it was just a few steps. No, it turned out it was several steep, steep steps to the middle of the rows and our seats were in the dead center of our row. It took two people and a railing to help me slowly descend the multiple steps. They had to hold me steady, lift each foot and place it on the next step and retrieve my left shoe which kept falling off and even bounced down several steps.

Meanwhile, it was getting closer to curtain time and I felt all eyes were on me. When we got to our row and saw the extra narrow path to our middle seats, I just wanted to give up. My friend convinced me to stay and she negotiated with patrons who were none too happy to scooch down so we could have the two  seats at the end.

I had a tough time getting in my seat because even though I squished my walker together I couldn’t get all the way in and there was nothing to hold onto other than my friend’s hand. The seats in front of mine were too low to grab on to. Finally, I managed to literally wedge myself in my seat and (thank God) found the play quite enjoyable. But when it was over, the entire row of people had to squeeze by me because it was one-exit row. People just thought I was being rude by not getting up - they didn’t connect me with the walker several feet away that Tommy was keeping until everyone had cleared. A lady seated in front of me gave me her cane and offered me her hand to help me get out of the seat.  With the same awkward system, I descended fewer stairs than I had faced when I arrived, walked by several ADA seats in a nice open aisle and got in the lift to bring me to the floor above.

It was a stressful and humiliating evening - one I shouldn’t have had to endure if someone had been thinking when they assigned seats for the theater season. 

Toenail Joy is Essential in Sickness or Pandemic

A few weeks ago, before salons were shut back down again due to COVID-19, I got a pedicure for the first time in months. Because I almost always wear closed-toe shoes, very few people get to see my neatly-trimmed peachy-pink toenails.

But I do.  

And they make me happy.

I learned the importance of toenail joy during my grueling three-year battle with cancer.

At times, I had multiple lines coming out of my body and tubes in my nose and mouth. At one point, my arms were swollen and the color of eggplant. My hands had to be restrained so I wouldn't pull out my tubes. After a brain biopsy, the quarter of my head that was shaved sported a nasty scar. Paralyzed from the waist down, I couldn’t control my feet, even to hold them upright as I lay in bed. Machines massaged my legs to prevent blood clots and my feet were attached to braces to keep them in place and prevent them from flopping to the sides.

But through it all, my toenails looked fabulous.

That made me happy.

My friend Mary came up with the idea, bringing a portable pedicure kit with her from Northern California to my hospital bedside. I remember worrying for a second that the strong nail polish aroma would annoy my roommate. (But it was only for a second, because she had been complicit in smuggling in several kittens into our room, so she had already tested the hospital roommate etiquette limits.)

Months later on a return trip to a different hospital, Mary gave me another pedicure. Because I was in a hospital bed at various facilities for four-and-a-half months unable to walk, my frame of vision was limited. I couldn’t see or do much, but I could see my toes. If they had resembled toenails a la Howard Hughes, it would have depressed me more than I already was. After months in the hospital, I learned health aides will help you with a lot, but pedicures was not on their list of services.

My peachy-pink toenails today

When I was released from the hospital to my home, I had a home nurse who was a godsend. Skilled, trustworthy and kind, she would help me with all sorts of things. When I learned she could transfer me into my wheelchair and help me into the car to take me to my doctor’s appointments, I had another idea.

Sure enough, she was able to take me to my local nail salon for periodic pedicures. I couldn’t get in the spa chairs which are part of the luxury package. I sat in my wheelchair and put my feet in a tub of water. It seemed luxurious to me.

For about a year after being released from that lengthy hospital stay, I had to return one week a month for more intensive chemotherapy. One time, a female doctor came in to check on me. She chatted with me, listened to my heart and lungs and checked my extremities. When she got to my feet, she said, “Nice color.” 

“Thanks,” I said proudly. “I always like a peachy-pink or coral.”

She looked confused.

“I was talking about the color of your feet. It shows that your circulation is good.”

I guess that was good news.

Three years after my non-Hodgkins lymphoma diagnosis, my cancer returned. I needed a bone marrow transplant.

 Ugh.

I could finally walk (with a walker), my hair had grown back and I was getting back to my new normal life when I got this news. I knew nothing about transplants and didn't know anyone who had ever had one. I learned it would entail stronger chemotherapy sessions (seven times the amount I had before), total body irradiation and a month in the hospital feeling the sickest I had ever felt.

I was given a thick booklet to explain the lengthy carefully-orchestrated process.  And I was assigned a transplant coordinator nurse to answer all my questions. 

I dutifully read through all the information. I was nervous about all of it, including the description of the hospital stay, the restricted diet while in and out of the hospital and a no -contact-with-pets rule. But if it meant saving my life (and it did), it was necessary. But there was one requirement that annoyed me.

Nail polish was prohibited. 

When my transplant coordinator called on the phone to answer any questions I might have, I asked her about the nail polish rule. Even on toes? 

Yes, she explained. Doctors could tell a lot about your health by looking at your nails.

What about clear nail polish? I asked.

Well, she said. That would be OK.

So during my transplant, I lost every hair on my body, I had excruciating mouth sores that made it nearly impossible to eat and I had an allergic reaction to an intravenous antibiotic that created itchy red welts all over my swollen face and body (my Jabba the Hutt phase). I was too weak to read or focus on a TV show. I threw up many, many times, and I became crazed and hallucinatory after frantically pushing the button of my self-administered morphine pump. 

But my toenails looked fabulous.

And that made me happy.

Also, the transplant -- almost 12 years ago -- saved my life.

That makes me very happy.

  

My Walker is an Open Invitation to Interrupt Me

When I was in grade school, there was a popular prank that involved putting a “Kick me” sign on someone’s back. You would cheerfully greet the person with a pat on the back, and surreptitiously stick on a piece of paper with the handwritten words and hope it would stay on for hours.

Hilarity would ensue.

These days, I feel like my walker serves as my personal “Kick me” sign, an invitation that says: 

“Hey, why don’t you stop this disabled stranger (or get in her way) and ask her questions, quiz her about her walker, tell her about your mother, grandfather, aunt, uncle, etc. who has a walker/cane/wheelchair, ask what is wrong with her, tell her all your health problems or those of your mother, grandfather, aunt, uncle, etc?”

That has to be the reason why complete strangers, when they see me using my walker, feel compelled to approach me. And comment. Or holler.

And in one case, almost knock me over.

I didn’t experience any of this when I used a wheelchair, but I’ve been using a walker for more than 10 years now and it’s been an endless stream of uninvited interactions. Because I have limited mobility, I can’t just walk away quickly or pretend like I didn’t hear them. So I am drawn into many conversations.

And because I am very, very nice, I will patiently answer their questions or listen to their stories, even when I just want to go from point A to point B and not necessarily have a long chat.

I have used a walker for about 14 years, ever since cancer ravaged my brain and abilities. My rare type of non-Hodgkins lymphoma is gone. (Woo hoo!) But the disability remains.

And I have a fleet of walkers  of various types to help me walk. Each has its own function. There’s one I use indoors at home, another outdoors at home and still another awaits me when I go upstairs. There’s one I use in my exercise class and a lightweight one that folds up and is easy to put in my shopping cart. There’s a different lightweight one that I use when walking longer stretches and there’s the tri-wheeled one I used for long distances or uneven terrain. There is another one which incorporates a seat but it is too bulky to take in the car and doesn't really work for someone like me who cannot balance by myself. 

I am always in search of the perfect walker. I’ve even advised two different college students who wanted to design one as part of their studies. But alas, I haven’t yet heard of The Perfect One. (Some of my criteria: lightweight but sturdy, foldable and portable, wheels that swivel, brakes that work, a fashionable look and affordable.)

Others are apparently on the hunt as well.

“Well, look at that!” they will say. “That’s different. I’ve never seen one of those! Maybe mom (etc. etc.) would like one of those. Let me have a look at it.” 

These comments are usually when I am either using one of my lightweight walkers or my tri-wheeled one. They fold up narrow while I am walking, which comes in handy when squeezing between tables in restaurants or aisles in stores. I am happy to share information about the type of walkers they are. But often my patience is tested. 

I was using one of my lightweight walkers one day as I passed by a woman waiting in the courtesy area at the drug store pharmacy, behind the line so you don’t overhear the other customer’s business. I was just passing by, not in line for the pharmacist, when the lady exclaimed over my walker, came over and tried to yank it from me.

“Well that’s a nice one!” she said, and with both hands grabbed the handles of my walker, trying to take it for an immediate test drive.

I held on for dear life, saying, “I need this to walk! You can’t just take my walker away!”

Another time, I was in a nail salon waiting area and another lady — intrigued by my walker — told me about her mother who uses a mobility aid. She asked if she could take it for a test walk.

Yes, I said, because I was sitting down and didn’t need it. She wandered around the salon for a bit and returned it.

I have answered questions about the brand, where I got it, how much it cost, and my illness. I don’t mind as long as you are polite about it and the question doesn’t stretch into a long conversation.  I was on a sidewalk in Palm Desert on a mini-vacation when a woman walked up to me and loudly said: “Hip or knee?” 

“Pardon me?” I said. 

She repeated “Hip or knee? Which operation did you have?”

“Neither,” I said. “Brain cancer.” 

(And top of the morning to you, too, I wanted to say.)

Then, she stopped and told me her hip or knee and walker story and I told her a brief version of mine.

I’ve experienced some commenters who are brief and to the point, and some who are a bit rude like she was. No time for chit chat, they just want me to answer the questions of where I got my walker and what is wrong with me.

I was just sitting down in a darkened movie theater recently when a voice barked “Temporary?” My husband looked around to see a woman sitting alone in an aisle behind us. “Are you talking to us?”

“Yes, is that walker temporary or permanent?” 

“Permanent,” my husband and I both answered.

“Well, have you seen the walkers that are upright with the high handles. My sister uses one of those and she really likes it……yada yada yada………”

I told her I had checked those out and they were too heavy for me to use in my car and too expensive. And, I wanted to say, can I just get ready to watch the movie?

Then there are folks who see me and tell longer stories. One time I was at car wash, sitting on the bench waiting for the signal my vehicle was ready. A guy next to me struck up a conversation about disabilities in general… and how he is a minister of some sort and they have a lot of disabled people come to the services…..yada yada yada. And on and on. 

Another time I was at a concert and was heading to the restroom during a break and a man came up to me and said his wife used a walker, too, after surgery and she’s sitting over there….yada yada yada…Did I mention I was on my way to the restroom? And didn’t have extra time to chat? 

After show, he met up with me again in the line to buy merchandise from the band. And his wife was there so I got to meet her and hear about her prior surgeries and another upcoming one and…yada yada yada… until somebody protested that we were holding up the line. 

Some days, I just want to make a clean getaway. On a hot day a few weeks ago, I had left my local Walgreen’s and was in the driver’s seat of my car folding up my walker to put it inside when I heard a loud voice. “I’ve been there!” A woman was heading my way, came over to the driver's side, said she used a walker for a while when she had some sort of operation or injury. And she proceeded to fire questions at me:

"Why do you use the walker?"

Cancer.

"What kind of cancer?"

Non-hodgkin's lymphoma. Mostly in my brain.

"Where do you live?"

Here in Castaic.

"Where in Castaic?"

Thinking does she want my address?, I gave her the general neighborhood where I live.

"I’m pretty sure it’s the water. Everything here has been poisoned from munitions plants."

Well, I got sick right after I moved here, so don’t think it’s from that.

"You should check it out. The water tables have been poisoned.

Who is your doctor?"

He’s from UCLA.

"Hmmm."

Ok, I kinda gotta go.

"Have you heard of_____?"

No.

"Well, it’s when you walk in nature and commune with the earth and the spirits. I live in (a mountainous area about 20 miles away) and go on them all the time and I will pray for you next time I’m on one."

OK. Thank you… I kinda gotta go.

All of these people are well-meaning. But imagine if you were interrupted all the time when you are just trying to get around and do your shopping, get your nails done, get in your car or watch a movie. These meddlers are lucky I’m so nice.

On the Road: Misadventures in Disability

Around my hometown, I prefer to frequent handicapped-friendly establishments. Sure, they are all supposed to be ADA compliant, but some just don’t make sense or are extremely difficult to navigate. I know where it’s a pain to get a parking spot and where it’s tough to maneuver through the aisles or tables.

I’d rather go to a store or restaurant where I know it will be easy to get parking, where I can guide my walker easily while inside and where the bathrooms are accessible and easy to navigate.

But it’s a whole different story when I hit the road. 

Some recent trips to Phoenix, where I spent 20 years as an able-bodied resident, showed I am throwing caution to the wind when entering unfamiliar territory.

A few months ago, we went to Phoenix to attend a reunion of newspaper people I used to work with. It was at a Mexican cantina near the university in Tempe. I had been there before when I lived in Arizona, before cancer (lymphoma) left me disabled. I was looking forward to a festive get-together with former colleagues.

My heart dropped when the hostess pointed to a private room UPSTAIRS. I looked at several steep stairs -- the equivalent of climbing a mountain for me. Was there an elevator? we asked. No.

I almost cried. Almost. After driving nearly seven hours across the desert to see some people I hadn’t seen in decades, I didn’t want to greet them with puffy, red eyes. 

Was there an alternate route with a ramp? we asked.  No. Was there an easier way? Yes, I would have to go through one of the dining areas, squeeze through the kitchen and up the alternate entrance with only three steeper steps and no hand rails.  

Super.

I had to interrupt the kitchen staff and then find two people to help me up the stairs. (Fortunately, I had one -- my husband -- with me.)

Is there a restroom upstairs, I asked? No. There was only the one downstairs. 

Harrumph.

I thought I’d better use it before going upstairs. I would limit myself to one beverage   because I knew it would be a huge deal to get me down the stairs and back up. 

The ladies room had one disabled stall with a handwritten sign on it, saying “out of order.” I could not use any of the other non-accessible stalls.

I made my way back to the front of the restaurant and told the hostess that the disabled stall in the ladies room was out of order. Was there another bathroom in the place that I could use? 

Umm. She didn’t think so. She seemed thrown for a loop that I was even asking a question, any question. This one seemed to mystify her.  She asked another worker, who was equally perplexed. Then they brought out a manager, who told me there was no alternative restroom for ladies, but I could use the men’s room. 

Super.

He checked to see that that bathroom was empty, then waited outside while I used the handicapped stall. When I got out, I thanked the man for his help. He said to let him know if I needed to use the restroom again.

Yeah, right.

As the day progressed, the place would be more filled with beer-guzzling college guys who I’m sure would be thrilled to find their bathroom closed while I slowly used the only available handicapped stall in the joint. 

Upstairs, it was a wonderful reunion: filled with hugs and memories, pride in what we had accomplished and an undercurrent of sadness at how the newspaper business is in a painful decline. Of the roughly 100 people in attendance, several were older than me. Some had faced medical challenges, like I had. But no one else attending the event had limited mobility and faced the same roadblocks as I had.

Lucky them. If there had been anyone who used a wheelchair, they would not have been able to attend the party.

When the affair ended, two people helped me down the steps and my husband and I walked to my car. We decided to stop for dinner at a tiny, single-level restaurant near where we used to live.

Thankfully, the disabled parking spot was right in front and the restrooms were a few steps away from our seat. But when I finally got to use the single ladies room, I discovered it was not handicapped accessible. 

Really.

More recently, I attended a wedding in Phoenix. We stayed at a nice hotel in an accessible room. But the disabled parking spots were nowhere near my room. Of 40 spaces outside our building, not one was designated for a disabled person. And there were no curb cuts -- the slanted pavement where someone in a wheelchair or walker can transition from the lot to the sidewalk.

So even though there were plenty of empty spaces, if someone parked close to my room to let me in or out of a vehicle, I could not get up or down from the sidewalk. 

The nearest handicapped spots and curb cuts were at the end of my building, quite a journey for me as I pushed my walker under the Arizona sun. 

The wedding venue was a lovely outdoor restaurant/garden property that had two disabled parking spots close to where the event was taking place.

Yay.

Two large port-a-potties were available for guests to use. There were stairs leading to them, so they were inaccessible to me.  My friend (the mother of the groom) had checked out the venue in advance because I had previously told her about a lack of accessibility at another part of the facility.  A staff member showed her a single unisex permanent restroom that I could use. The staffer said it was accessible.

I found out the day of the wedding that it was not. 

It was a huge effort for me to get inside the small bathroom. I  knocked over decorations as I moved around the tiny room, squeezing the handles of my walker to make it narrower. (A mobility aid without this feature simply would not have fit in the room.) And the toilet was extra low to the ground with no grab bars to help someone like me get on or off the commode. I might still be stuck on the seat if I hadn’t planned ahead and brought a small portable toilet topper, discreetly carried in a fashionable zipped-up tote. But it was still a major effort to simply get up off the toilet with my weak legs.

Although the wedding and reception were absolutely lovely and lots of fun, I had to leave early because getting to and from the restroom (and on and off the toilet) was simply too difficult for me. I was worn out.

On one of our drives home, we stopped at a rest stop in California. The ladies’ room was temporarily closed for cleaning. We were directed to a back-up single room bathroom. It was available and handicapped accessible.

Yay. 

There were two large storage buckets in front of the sink and paper towel dispenser. 

Boo.

The door wouldn’t lock so my husband stood by, making sure no one entered while I was inside. While I maneuvered around the buckets to use the toilet, and contorted myself to wash my hands and dry them, a few ladies were gathering outside. I could hear them talking, anxious to use the only available public restroom.

Finally finished, I tried to open the door. It was stuck. Fortunately, my husband was right outside. I hollered at him through the door that I couldn’t get out. He tried to push while I pulled. It didn’t open.

I had a moment of panic and a brief vision of me stuck for hours in the hot bucket room with a mob of angry women outside, trying not to wet themselves.  

We pushed and pulled with more force and eventually got the door unstuck. If I had been in a wheelchair or on my own, I would not have been able to use the room.

Once freed, I made my way to our vehicle and we headed for home sweet home -- where I know the locations of the best accessible establishments. Yay.