Things People Say and Do

Every so often, I’ll see a post with the title of “Things Not To Say to a Wheelchair User,” or something like that. I’ve even written a post along those lines. You can read it here if you missed it.

I don’t know why, but lately I have been on the receiving end of many comments I am sick and tired of hearing. When I share stories of these interactions with friends, they often express disbelief and wonder that I regularly have these interactions. But, apparently there are people who haven’t read the memo. This list of 5 pet peeves of mine is for all of those who STILL aren’t clear about what to say or do around wheelchair users.

1. NO SPEEDING JOKES!

We get it. Our chairs are cool, and they go fast. You might see us go whizzing by and think you’ll try to make a clever joke about us breaking a speed limit. DON’T make whatever comment you are about to make. Just don’t. It’s not original. It’s not funny. I spent the first 29 years of my life being the slow one. You bet your ass I’m going to speed and go fast now that I have the ability to do so!

2. We’re not going to run you over!

How many times have you walked down a hallway and encountered a wheelchair user approaching you from the opposite direction? Do you just keep walking or do you flatten yourself against the wall in fear the wheelchair user will run you over? When I used to work in an office building, this would happen to me at least once a week. I would be rolling down the hall towards my office, see a person walking towards me and get ready to smile. I stopped counting how many people literally stopped walking and put their back against the wall after it happened for the tenth time. It wasn’t a narrow hallway. At least four people could walk comfortably side by side down this hallway. Yet, strangers would cower in fear whenever I approached. One man even jumped into the stairway to avoid me – while I was still 20 feet away! He stood there until I went by before coming back into the hallway and resuming his walk to the cafeteria.

Here’s the thing – I have control over my chair. When I am going from place to place, I am constantly aware of what is around me and make minor adjustments to my pace and direction accordingly. Just like most people who walk, I am usually able to avoid potential barriers that might be in my intended path. I am not going to run you over unless you come to a sudden and unexpected stop directly in front of me without warning. Or unless you try to make a stupid speeding joke. If you do that, you deserve to have your toes run over. Twice.

3. I don’t care about your relative or friend who also uses a wheelchair, and

4. I don’t dream about a wheelchair that can climb stairs.

Sometimes, people will try to build a connection by telling me right away about someone else they know who also uses a wheelchair. Usually, the conversation goes like this:

Stranger: Hey, nice wheels. My neighbor just got a new chair like that.

Me: Thanks.

Stranger: Her chair can tilt and recline so she can take a nap in it. Does yours do that?

Me: No.

Stranger: Yeah, it’s amazing what wheelchairs can do. Have you seen that YouTube video of the chair with treads climbing stairs? I bet you want one of those!

Me: No, I’m good with mine thanks. (End Scene)

I’m not impressed by the fact that a person knows another wheelchair user. In fact, I’m more surprised when people tell me they don’t know a disabled person. Since approximately 20% of the population lives with a disability, chances are good that everyone knows at least one disabled person. So, telling me you know another wheelchair user as a means to form a connection really doesn’t help me feel more inclined to open up.

As for wheelchairs that can climb stairs – well, if we simply built or modified our environments so people of all abilities could participate in equality, we wouldn’t need to waste money on resources to eliminate barriers. I don’t need a wheelchair that can climb stairs. I just need architects and planners to consider that not everyone has the ability to climb stairs, and then develop inclusive plans and designs. I am more disabled by a society that does not consider and plan for my access needs than I am because I have a wheelchair that doesn’t climb stairs.

5. Just because we’re disabled doesn’t mean we know all the other disabled people!

Let’s go back to the scenario of a stranger telling me they know another wheelchair user. At least 50% of the time, once the stranger tells me they know another wheelchair user they then ask me if I know that person. Here’s the thing – I don’t know every other wheelchair user! Sure, I know LOTS of people. I have a large circle of support and am connected to others in the disability community. But, despite what my friends and coworkers may tell you, I don’t know everyone.

I could easily continue with this list, and maybe some of my readers will share there own experiences in the comments. For now, I’ll close with this advice.

Everyone wants and deserves to be treated with respect. While I do my best to assume good intent in the actions and words of others, the little digs add up over time and become tiresome. Next time you are uncertain of what to say or do, try a simple smile and “hello.” That always seems to work for me.

Out of the Mouths of Babes

Friday night was special. I spent the evening with family celebrating my great niece’s seventh birthday. Seven is a fun age, and her party was packed with things a seven year old girl would enjoy – pizza, new clothes for her doll, and a three layer cake covered with pink frosting and chocolate chips.

One of the reasons I enjoy family events is because of the laughter and love we share whenever we are together. Emily, the birthday girl, and her younger brother Evan who is four years old, kept us smiling all night. But it was an exchange that happened early in the party that continues to play in my head.

I was sitting with my sister Sandy when Evan approached us. Like most children, Evan is intrigued by my wheelchair. When he was younger, he was content to simply ride on my lap. Now he is determined to figure out how the controls regulate the various aspects of my chair, such as speed and seat elevation. Standing next to my chair, he displayed remarkable restraint keeping his hands at his side rather than reaching for my joystick. Suddenly, he turned his quizzical gaze to Sandy and this delightful interchange took place.

Evan: Aunt Sandy, where’s your wheelchair?

Sandy: I don’t have one.

Evan: Why not?

Sandy: Because I don’t need one yet. Maybe someday I’ll have one.

Evan: (looking delighted and excited, and clapping his hands) Then you’ll be twins!

The three of us laughed as Sandy picked up Evan for a hug. The party continued, with pizza, presents and cake. But Evan’s comments stuck with me and caused me to reflect as I boarded the bus to go home.

At four years of age, Evan already knows that a wheelchair is a cool piece of equipment. He does not view me with pity. He does not perceive a wheelchair or a disability as being a Bad Thing, with a capital b and capital t as said by the late, great Stella Young. Of course, he doesn’t understand all the intricacies of life with a disability because he is just four years old. But he understands critical information other nondisabled adults seem slow to grasp, such as:

1. I am my own person.
2. My wheelchair is not the worst thing in the world, or a reason to shy away from me.
3. I do not have a poor quality of life.
4. I am capable and competent.

Evan is not unique in his abilities. All of my nieces and nephews, and now their children, have been exposed to my wheelchair and my disability their entire lives. They have all developed a level of disability cultural competency through their interactions with me, a disabled family member. This has created a level of comfort with disability at a young age in many of them which their peers may not have developed.

When I am with my young family members, I don’t hear negative comments about disability. I don’t hear pity. I don’t hear insensitve or ableist comments like the ones I hear from strangers on a regular basis, such as:

You manage that thing pretty well!

Slow down – you’ll get a speeding ticket!

You got snow tires for that thing?

You’re so pretty for someone who uses a wheelchair.

Oh, you work?!

And my personal ‘favorite’…

I don’t know how you manage. If I had to use a wheelchair, I’d kill myself.

My young family members who have been exposed to my reality as a disabled woman say different things. They say things like:

That man has a red chair like Aunt Denise’s!

Maybe you could drive us to skating when you get your new van Aunt Denise.

Will you read to me Aunt Denise?

We put the ramp down for you Aunt Denise!

And my personal favorite…

I love you, Aunt Denise.

If my young nieces and nephews can understand disability is not the worst thing, why can’t more adults figure it out?

When Will I Get Carried Away?

Thursday morning as I ate my oatmeal and scrolled through my Twitter feed, I noticed a story with the headline American Airlines Checked My Dignity at the Gate. I opened the post which was written by Mark E. Smith, or WheelchairJunkie as he is known to me via social media. In case you missed it, here’s a synopsis.

Mark is a power wheelchair user who travels frequently for his job. His recent trip with American Airlines earlier this week started much like any other trip. After working for 5 days at a trade show in Southern California, he was ready to return home to his wife and children. Being familiar with the process of flying while disabled, Mark arrived at his gate ready to pre-board, with his ticket in hand and wheelchair tagged for baggage. He was assisted to his seat and waited for departure as the other passengers boarded around him.

However, Mark didn’t get to take that flight home. Here is how Mark described what happened next:

“Seated in row 24, my attention was called away from looking out the window, to a large group of American Airlines’ flight attendants, gate agents and ground crew – a sea of varying uniforms and two-way radio chatter – coming up the aisle. Without speaking to me, they asked the two women sitting next to me to move from their seats, explaining that they were removing me from the plane. I was immediately alarmed, not knowing what was going on, and asked what the issue was? Everyone in the American Airlines group paused and the entire plane was voiceless – just the mechanical hum of the 737.

I looked from one person to the next to the next, and all just stared. Finally, a flight attendant exclaimed, “This plane isn’t leaving without him!” and sat beside me. Her sudden burst of emotion confused me even more. I was then told that communication between the captain and ground crew instructed that he wouldn’t accept me and my wheelchair on the flight.

I was dumbfounded. American Airlines personnel were refusing to transport me because I am a person with a disability who uses a wheelchair.”

This is not the first time I have heard of a disabled person being refused passage on a flight. Back in 2010, US Airways escorted frequent traveler and motivational speaker Johnnie Tuitel from a flight. Tuitel was in his seat before airline personnel told him he would not be able to fly without a companion, something he does regularly. But, according to this article on CNN:

“US Airways spokeswoman Michelle Mohr said Tuitel was not deemed unfit to fly alone just because he uses a wheelchair.

‘He did not appear to have the ability to assist himself in evacuating in the event of an emergency. He appeared to have a lot of difficulty moving,’ Mohr said.”

Incidents like this just don’t happen in the United States. In 2015, Luke Kenshole was escorted off a British Airways flight in London after all passengers had boarded. His crime? Being disabled. Luke has cerebral palsy and uses a wheelchair. According to this article on the Daily Mail:

Luke was on the plane before anyone asked him whether he was able to take himself to the toilet, and he said he needed assistance to get onto the wheelchair.

He was then told he would have to get off the plane for health and safety reasons.

Just for the record – I flew from Los Angeles, California to Melbourne, Australia in 2015. I was not able to take myself to the toilet on the plane during the 15 hour flight. Since I pre-boarded the plane before the other passengers, I spent over 16 hours in seat 49C. I was not kicked off the plane for health and safety reasons, although choosing to hold my pee for 16 hours was probably more detrimental to my health than anything else I did that year!

On Thursday, I shared Mark’s post on social media. Some of my friends expressed outrage. Some questioned how it is legal for an airline to act this way towards a disabled passenger. I wanted to answer this question so I started to do some research. I am not a legal expert, and if any reader has insight I welcome you to share it with all of us.

First off, the Americans with Disabilities Act is not the law which governs airline behavior when it comes to disabled passengers. The Air Carrier Access Act governs airlines and provides regulations related to treatment of passengers. According to the U.S. Department of Transporation rule (Title 14 CFR Part 382), airlines are prohibited from discriminating against people with disabilities. The following, taken from the U.S. DOT website, is a few of the prohibited practices:

• Airlines may not refuse transportation to people on the basis of disability. Airlines may exclude anyone from a flight if carrying the person would be inimical to the safety of the flight. If a carrier excludes a person with a disability on safety grounds, the carrier must provide a written explanation of the decision.
• Airlines may not require advance notice that a person with a disability is traveling. Air carriers may require up to 48 hours’ advance notice for certain accommodations that require preparation time (e.g., respirator hook-up, transportation of an electric wheelchair on an aircraft with less than 60 seats).
• Airlines may not require a person with a disability to travel with another person, except in certain limited circumstances where the rule permits the airline to require a safety assistant. If a passenger with a disability and the airline disagree about the need for a safety assistant, the airline can require the assistant, but cannot charge for the transportation of the assistant.

Let’s look at that first bullet point. When was the last time you heard the word “inimical” in real life? In case you don’t know what it means (like me) I’ll save you the trip to the dictionary. Inimical is an adjective which means likely to cause harm or have a bad effect. Used in a sentence: The disabled passenger was bodily removed from his seat because the pilot thought he was inimical to the safety of the flight from Los Angeles to Philadelphia.

Secondly, every airline provides passengers with a contract, usually referred to as Conditions of Carriage. You know that legal mumbo-jumbo you ignore when you purchase your tickets? Yeah – until yesterday I had never read that either. But I did read the American Airlines Conditions of Carriage and found a section called “Acceptance of Passengers” which listed various reasons American may refuse to transport or may remove a passenger from a flight. Number 5 on that list?

Your physical or mental condition is such that in American’s sole opinion, you are rendered or likely to be rendered incapable of comprehending or complying with safety instructions without the assistance of an attendant.

Side note – number 11 is an offensive body odor not caused by disability or illness. I know for a fact that rule gets ignored often! Back to the issue of being too disabled to fly…

Let’s suppose the pilot thought Mark was inimical to the safety of the other passengers on the flight. I don’t know why Mark, a disabled adult, might be more inimical than an unaccompanied minor who might not be able to independently follow directions during an emergency. I have never witnessed an unaccompanied minor being physically lifted and restrained in an aisle chair and removed from the cabin of an aircraft. Would people speak up if that happened? Nobody spoke up for Mark.

“As I scooted across the seats toward the crowd, having to transfer into a dolly-like chair so that they could roll me off of the plane, all of the other passengers watched, silent. Although many clearly heard that I was being removed because American Airlines didn’t want me and my wheelchair on the flight’s manifest, no one questioned why, in 2017, a businessman with a disability was being ejected from a plane? In that moment, I realized the gravity of it all: I was being stripped not just of my civil rights, but of my humanity. For the first time in my life, in the microcosm of that American Airlines Boeing 737, I was discarded as a human being – literally.”

I almost cried when I read this paragraph. Having been late for connecting flights due to weather delays, I have endured the stares when I am carried onto a plane after all other passengers have boarded, the glares and sighs from those around me who are inconvenienced by having to move so I can be lifted to my seat. I cannot imagine what it would be like to be forcibly lifted and removed like a criminal, without an explanation from the crew.

Thankfully, Mark was able to get home on the next American Airlines flight to Philadelphia. His experience was featured on his local television station. You can hear Mark talk about it in this report and you can read what New Mobility had to say about it here.

Every time I fly, a part of my mind wonders how I will react if the crew challenges whether or not I will be inimical to the safety of the flight. Typically, once I am settled in my seat on the plane, the flight attendant comes over to ask how they might be of assistance. If I am flying without a companion, I let them know I might need the plastic bin I use as a footrest in flights moved when we are in the air. Usually, the stranger seated next to me offers to help once I introduce myself and explain how I’m counting on them to secure my oxygen mask if the cabin loses pressure.

The simple fact is once I am on the plane, I am not able to do much for myself. I can usually put in my own earbuds. If I have a tray table in front of me, I am able to hold myself upright so I can eat and drink. Other than that, I am unable to do much more than sleep and count the hours until I can get back into a comfortable seat.

My fear is that one day, an uneducated pilot or crew member will see me and decide I am too much of a risk. When they come for me with the aisle chair, will anyone speak up for me and my humanity?

Going Up

Last week, my wheelchair died. I had just transferred from my chair into bed on Tuesday night, and decided to start moving it out of the way while waiting for my Personal Assistant (PA) to put the transfer board down. Only, when I pushed the joystick nothing happened.

I’m not a stranger to this. Sometimes, I don’t wait long enough for the drive motors to engage before trying to drive. I’m impatient. I like to go when I want to go. But, I know there is a start up sequence that has to run and if you try to operate the chair before it is ready, it won’t go. You’ll push on the joystick and nothing will happen.

So, last Tuesday night I did what I always do. I counted to five and tried again. Still nothing. I turned the chair off, then turned it back on and waited for another five seconds.

Zero movement.

My chair has a powered seat, so I tried those controls next. The seat base elevates and moves forward and backward, giving me more clear floor space in front of my chair during transfers. My seat elevator also makes it possible for me to reach higher objects, rise to a standing height during speaking engagements, and helps me get my own drink off the bar when I am out with friends instead of relying on others.

Last Tuesday when I tested the seat controls, it moved forward and backwards but did not change height. This was a problem because it was elevated. I elevate it most of the time I transfer out of my chair because, well, gravity still works. It’s easier to go from higher to lower than to transfer uphill.

The final piece of the puzzle came to light when I looked at the screen on my joystick. Highlighted in yellow was the message “drive fault.” This told me it was probably either the joystick, the controller (the computer brain of the chair) or the drive motor. None of them were good possibilities, but without a diagnostic tool I couldn’t do anything further. I had my PA disengage the drive motors, push my good chair out of my bedroom and get my old clunker chair out of my office.

Thank goodness I listened to Bob, my wheelchair repair guru, when he told me to put new batteries in my old clunker. Sure the old clunker isn’t comfortable to sit in for long periods of time, and I wasn’t sure how I would manage in it with formerly fractured femur, but at least the chair was made to my measurements. Five years ago, this was my daily chair. Even if it had outlived it’s daily use, it would be better than a loaner which didn’t fit me.

I used my clunker last Wednesday while Bob ran diagnostics on my chair. Of course, when my PA brought the chair to the shop, it worked perfectly. Try as he might, Bob couldn’t get the chair to fail. From how I described the error code, Bob was fairly certain it was the seat elevator, not the joystick, motors or controller. He played with some loose wires, adjusted the seat elevator actuator (a known problem on prior repairs to my chair) and arranged for delivery of my chair back to me later that day.

Fast forward to this morning, a week later. I drove my chair under the bathroom sink after breakfast, ready to brush my teeth. I activated the seat controls and moved my joystick to elevate my chair. All normal activities, except the chair didn’t move. Ugh.

Opponents of funding for complex medical technology always say adaptations like seat elevators are luxury items and not really necessary for people like me. Luxury? Well, here is a list of things I have not been able to independently perform in the 90 minutes since noticing my broken seat elevator:

• I have not been able to brush my teeth. The bathroom and kitchen sinks are too high for me to access without my seat elevator. I could grab a cup to use as a spit cup but…
• I can’t reach the cups in the cabinets because I can’t elevate my wheelchair. No access to cups means nothing to use to help me brush my teeth or take a drink.
• I can’t wash my face  – another task requiring the ability to reach the sink.
• I can’t get my sweater off the hook behind my bedroom door. I’ve tried using my reacher. It doesn’t give me enough height.

I’ve already called Bob. He’s going to look at my chair as soon as my PA gets it to him. Thank goodness for Bob. Every wheelchair user needs a Bob, and those of us who have a Bob know how fortunate we are.

 

Unruly Underwire

Last month, I took part in the 2nd Annual Brava! This event is a fundraiser for the YWCA of the Greater Capital Region. The evening features local writers performing readings on the subject of brassiers in their lives. I read my essay “Just the Bra for This” last year, and was honored to have another essay selected by the jury for this year’s successful event. Thanks to my sister Sandy, who was also one of this year’s featured writers, you can watch a video of me reading this essay.

Yes, this is a true story. Yes, I still talk to Don and he knows I shared the story publicly. I know I am not the only wheelchair user who has had odd things stuck in her wheels. Since I shared this video on my Facebook page, friends have shared their stories of underwear, hair ties, socks – you name it – stuck in their wheels. To my knowledge, I am the only one with an unruly underwire though.

My longest romantic relationship started because I was being held hostage by a bra.

When Don first called in late September 2001 to ask me on a date, I was using a lightweight manual wheelchair. It had removable armrests, swing-away footrests and weighed less than 22 pounds. It was everything I wanted and needed from a wheelchair at the time.

The only part of the chair I didn’t love was the front wheel, or caster, mount. My front casters were four inches in diameter, held in place with a fork mount allowing them to spin and rotate easily, too easily. Things were always getting caught in them – hair, yarn, string, even fake cobwebs at Halloween.

I don’t really know how it happened. I was sitting in my bedroom, sorting laundry when the phone rang. The basket tumbled off my lap as I dashed across the floor to grab the cordless headset. Don said hello as I backed up to collect the wrinkled shirts and pants now on the floor around me.

Except, I didn’t move. My front wheel was stuck, not rotating, not turning, nothing. I almost flipped backwards as I uselessly struggled to reverse my chair off the pile of clothes. Looking down I realized something was wedged into the caster fork, through the front wheel.

My pink underwire bra, a favorite because of the fit, color and comfort, had somehow become twisted up inside the wheel. The wire itself, which had been threatening to come loose from its casing for weeks, was now wedged across the wheel, effectively locking it. My attempts to move and turn had simply lodged the bra firmly in place, preventing any wheel movement whatsoever.

I sat listening to Don, wondering how to bring this up in conversation. How exactly do you tell a male stranger that you are held hostage by a bra? A bright pink bra?

Um, excuse me Don. You don’t seem like a psychopath, and I’d like to talk to you, but there is a bra stuck in my wheelchair so now’s not the best time for us to have our first conversation.

Yeah – to pull that off without scaring a guy obviously flirting with me, who is interested in me, and who called me? As a rule, men didn’t often pursue me, so I was not going to jeopardize a potential romantic connection just because of an unruly underwire!

I continued to talk with Don as I frantically tried to come up with a strategy to set me free. All my adult life, I have joked with friends that living with disability has made me a female MacGyver, the TV hero who could get himself out of any sticky situation. Put me in a tough spot with very few resources, and I can problem solve my way through just about anything. But try as I might, I could not release the bra from the wheel. I twisted and contorted my body, bending forward, trying to pull the strap to move the wire while still maintaining a grip on the phone.

Yes, I love visiting bookstores.

I grabbed a pen off my dresser and attempted to push the bra out through the hole in the wheel.

No, I haven’t been to the new Barnes and Noble.

I leaned over the opposite way to take weight off the wheel praying to get it to spin freely, all the while making what I hoped were appropriate responses and encouraging remarks to Don.

Coffee on Sunday? I think that sounds great!

After an hour I realized the only way to liberate myself was to sacrifice the pink underwire and just cut the bra loose. I could see my scissors on the desk next to my bed, four feet away. Somehow, I had to get them.

So, I removed an armrest and used it to push the laundry basket across the floor to the desk. Turning a dirty pair of pants into a lasso, I tossed one pant leg over to the desk. The pants and the scissors slid and after four attempts, fell into the laundry basket. I dragged the basket containing the coveted scissors back to me with the chair armrest.

Snipping the offending undergarment into multiple pieces, I laughed in vindication. I wheeled backwards, taking in the tattered pink satin scraps scattered on the floor like cotton candy confetti. I wielded my shears in victory as I tossed the misshapen underwire into the trash.

MacGyver’s got nothin’ on me.