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.  

Grrrrrr: Places that Hamper Accessibility or Don't Accommodate for the Disabled

Some establishments are very accommodating to the disabled.  I’ve mentioned a few in my previous blogs. But despite the rules imposed by the Americans with Disabilities Act , many places either do not accommodate those with mobility limitations or do it poorly.

Grrrrrr.

I ran across a few in the past few months. 

The first came when my husband wanted to take me to a concert. My Morning Jacket was playing at the Wiltern, a small theater that is described as an Art Deco architectural landmark in Los Angeles. He went to the ticketing website for Live Nation and checked the box for "wheelchair accessible" when asked if he needed accommodations.

I normally use a walker as my mobility aid, but in a situation where I have to walk a long distance, I need a wheelchair. 

The ticketing agent found two seats in the loge, upstairs, four rows back. In a live chat online during the transaction, the agent mentioned that the seats were not accessible  but said the venue would accommodate me upon arrival. My husband said: “I will be bringing my wife in a wheelchair and assume there is an elevator that will take us to the loge level.” 

The agent did not reply to this.

After the transaction was processed, my husband said this: “Just to confirm that we’d be able to take an elevator to the loge level since my wife will be in a wheelchair”

The ticketing agent replied: “I’m sorry but there aren’t elevators available at the venue.”

He told my husband to call the venue directly because they would accommodate me.

By hiring a helicopter and dropping me through the roof? Maybe they would have put me downstairs, but my husband chose a loge seat so that I could see over the standing/dancing general admission fans. We didn’t find out what the Wiltern would have done with me: a business trip prevented my husband from going. My able-bodied son took a friend to the show.

When I recently called the Wiltern, the woman who helped me said Live Nation was "wrong” to say the venue would have accommodated me.

She said they would have tried, but there was no guarantee I would get in, even though I had  a ticket. It depends, she said, on how many other patrons show up.

In other words, just as I had concluded in my efforts to get accessible tickets to a Bruce Springsteen concert, it’s a crapshoot when you are person in a wheelchair looking for access to live music shows.

During the holiday season, I had three more disappointing incidents. One came during a company party held at the historic Athenaeum guest lodge at the California Institute of Technology in Pasadena. We had reserved a room for the night, one of 24 guest rooms in the 1930s-era building. The company employee who made the reservation had requested an accessible room for me. She says the person who made the reservation assured her I would get one.

But upon checking in, after a long walk around the side of the building to find a ramp, and winding my way through dining tables and chairs to get to the check-in desk, I learned that my room was not accessible. Indeed, the clerk said, they had no accessible rooms at all.

For a lodging establishment named after Athena, the Greek goddess of wisdom, this did not seem wise to me. 

Fortunately they did have an elevator to take me to my room, which was a substantial distance away. I always bring a toilet-topper with me on out-of-town trips (a device that sits on any toilet to enable me to get on and off) because experience has shown that an accessible room might not be up to my standards. And I make sure I have a collapsible walker that can get me through narrow spaces. If it were not for that, I would not have been able to even get in to the bathroom in our room.

It was so small that the extra roll of toilet paper and the tissue box were in the main part of the room, not the restroom. I could not get into the shower.

And while there are many beautiful rooms and outdoor spots in which the Athenaeum holds functions, there was only one ladies restroom with one handicapped stall, far in the corner by the front desk.

I understand that this is an old building and a private club. But the lodging is open to the public and the establishment often hosts events. And it’s a place once visited by Albert Einstein. Having no accessible rooms and making it extra difficult for the handicapped doesn’t seem too genius to me.

Grrrrrr.

Also in December we were invited to attend a wedding in Phoenix of a good friend of ours. He and the bride-to-be had reserved a block of rooms at the historic Arizona Biltmore at a reduced rate. A shuttle was provided from the Biltmore to the wedding site.

We called the hotel early on to make our reservations. But when my husband told the agent we would need an accessible room, the person said no such rooms were included in the wedding block. They had one discounted regular room left. Or we could book an accessible room for an extra $80-$100 per night. We were planning to stay five nights, so this was a steep difference. We expected better customer service from a hotel that says it is one of the best in the world.

No thanks, we said. We found an accessible room for a lower rate two miles away.

A friend of mine, who advocates for the disabled, was angry when I told her this story. “That’s illegal!” she said.

But we didn’t know that. The ADA provisions are complicated and lengthy. And there is no pocket guide to refer to when I find myself in situations like this. So I just change my plans, grumble and save the story for my next angry blog.

One place I don’t expect to find problems with accessibility is the U.S. Post Office.

After all, it is run by the federal government, which oversees the enforcement of the ADA.

But tell the feds to check out my local post office in Castaic, Calif. That office has one, count ‘em, one, disabled parking space. There is an accessible ramp leading into the office, but it’s right in front of the space. So if you don’t get the solo spot and have to park elsewhere, you must walk quite a distance until you get to the ramp.

Most times, the spot is empty.

But I was particularly galled during the busy Christmas season, when I pulled up to the office with presents to mail. I had brought along a sack to help me carry them as I used my walker. The parking space was taken. I checked: the vehicle had a valid disabled placard. I waited in my car for a spell and then drove slowly around the parking lot.

The driver never emerged from the post office.

So I parked around the corner in the lot, loaded up my bag and pushed my walker the long way around, up the ramp, into the office. I saw no disabled person. After mailing my stuff, I walked the long way back, noticing that the car was still there. 

It was then I noticed the adjacent office in the building houses a credit union. Aha! I thought, the disabled spot holder was probably in there filling out lengthy paperwork.

Who on earth designed a parking lot with a single disabled spot for a post office and a credit union?

Grrrrrrr.

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. 

 

Springsteen Reprise: How I Got Accessible Tickets and What I Learned in the Process

I finally got tickets to see Bruce Springsteen next week in Los Angeles.

After pitching a virtual fit through my blog post and sharing it on 

Twitter and Facebook, I was contacted by the venue, the LA Memorial Coliseum and Sports Arena. Voila, I purchased two tickets -- a wheelchair and a companion spot.

While I am beyond thrilled that I will get to see The Boss on his Wrecking Ball tour, I realize this: My success was a small step (roll?) for this disabled person but, still, a giant disappointment.

I learned a lot about concert venues making accommodations for the handicapped, what they are required to do and what they do.  And it’s not pretty out there.

My friend, blogger Jennifer Longdon, uses a wheelchair and advocates for the disabled in Phoenix. When she shared my blog link on her Facebook page, many people weighed in on the plight of the disabled who want to attend concerts.

It turns out there are revised American with Disabilities Act regulations  with specific requirements for this. It governs how many seats must be accommodating, how many companion seats you can buy with an accessible seat and rules regarding resale.

Here is an intro from the ADA explaining why such rules are needed:

Over the past 20 years, some public and private venues, ticket sellers, and distributors have not provided the same opportunity to purchase tickets for wheelchair-accessible seats and non-accessible seats. The general public has been able to directly and immediately purchase tickets for non-accessible seats, whether through a venue's Internet site or its box office, or through a third-party Internet based vendor. However, these direct purchase options have simply been unavailable to many individuals with disabilities because transactions frequently could not be completed. Instead the purchaser was directed to send an e-mail or to call a separate telephone number to request tickets and wait for a response. These burdensome policies still exist, making it difficult or impossible for those who require accessible seats to purchase tickets, especially for popular events that sell out in minutes. As of March 15, 2011, venues that sell tickets for assigned seats must implement policies to comply with the new ticketing requirements.

Admirable. Right?

The reality is things are still tough. Compliance is inconsistent. And the loopholes are big enough to steer a wheelchair through.

Disabled people from across the country on Facebook reported a mix of successes and disappointments. Some said they would just show up at concerts and raise hell. Jennifer said she once won up-close concert tickets only to be told there was no way to exchange them for accessible seating. Some said they came to arenas with general admission tickets and demanded to be accommodated. In some cases, this worked. Venue staffers would remove folding chairs so they could sit up front. One time, a woman reported, one of Tom Petty’s security guys moved her wheelchair past a barrier so she could see.

In another case, Jennifer went to a show with a general admission ticket. She was told all the accessible seats were taken and she was “a public safety hazard” without an actual seat. She left.

I’m not brave enough to do that and gamble that it might work out. It’s hard enough for me to sit up and search for tickets via the computer and phone. It's a huge pain to get from point A to point B for disabled people and particularly to visit a busy venue when you might be turned away.

One woman said after driving two hours to see "Shrek the Musical", she was told she could sit in her wheelchair in the orchestra section while her child could sit in the balcony. She refused to leave and they accommodated her.

Another time, she said, a venue told her she could not sit next to her friend because there was no spot for two wheelchairs together in the whole arena. She demanded they remove folding chairs to fit them in.

ADA regulations says accessible seats must be sold during the same hours, methods and stages as non-accessible seats.

In the case of the Bruce tickets, these rules were followed. I learned that no box office tickets could be sold over the phone, but Ticketmaster had a disabled seating request system.

Although I acted with warp speed when the tickets went on sale,  I was told twice by Ticketmaster that accessible seats were all gone. Each email said they had checked with the venue to confirm that there were none of these seats left. When I made another attempt a few weeks later (because sometimes additional seats become available) I was told the same thing. And again they said they had checked with the venue to confirm this.

Still trying to find tickets, I called the number on the venue’s page regarding accessibility. I was stuck in recorded message hell: after I listened to the Press 1, Press 2 spiel and waited to speak to a live person, the call would loop back to the beginning.

After I forwarded my blog post to the LA Coliseum Facebook page, an employee there contacted me, apologized and connected me with the box office where I easily bought accessible tickets.

When I later asked him why I had been told three times that all the accessible tickets were sold out and that they had confirmed this with the venue, he said he didn’t know why Ticketmaster said that.

Some of the Facebook friends recommended disabled folks contact the venue a few days ahead of when tickets go on sale. The LA Coliseum guy said it is always advisable for disabled fans to call the venue directly.

Providing you can get through.

While I applaud the improvements the ADA requirements put in place, I did notice some problems. 

-- No one is required to  prove disability to purchase an accessible ticket. Not sure how it would work if you had to. But at least attesting to the fact you need accommodations might weed out some of the cheaters.

This opens the door for scalpers to gobble up seats and sell them to others not needing accommodations, screwing the truly needy out of a chance to find tickets.

-- Accessible seats are permitted to be resold to non-handicapped fans. But I couldn’t find any on Craigslist, Stubhub or two other resale sites.

-- But a disabled person buying a non-accessible seat through a secondary market must be permitted by the venue to exchange a seat for an accessible one, when available. Huge caveat.

-- A venue may move a patron to another seat in order to give that spot to a person with a disability who requires it.

Nice.

But the regulation includes another phrase, which negates the rule itself, saying the venue “is not obligated to do so.” 

-- A venue must save a percentage of accessible seats for disabled fans, but can release them and sell them as general public seats when all non-accessible seats have been sold, all seats in a particular section have been sold or all seats in a price category have been sold.

“However, venues are not required to release accessible seats and may choose to hold back all or a portion of the remaining accessible seats.”

In other words, it’s a crapshoot.