Wheelchair access symbol: white line drawing of a figure wheeling himself in a wheelchair on a blue background.

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 GateI 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.

Unruly Underwire

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.

Future or Present?

Today, December 3, is International Day of Persons with Disabilities (IDPWD), a day designated by the United Nations to increase public awareness, understanding and acceptance of people with disabilities. The theme for this year is Achieving 17 Goals for the Future We Want.”  The theme relates to the 17 Sustainable Development Goals which were recently adopted by the United Nations. Of particular note, this year marks the 10th anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), an international treaty not yet ratified by my country but embraced by many other countries around the world.

While I think it is important to consider how we can work to incorporate people of all abilities into our plans for the future, I am too mired in what it means to live as a disabled person in the present to get excited over this year’s IDPWD theme. Personally, I spend too much time ensuring my basic needs are met here and now to think about what will happen next week, next month, next year.

Of course, I do worry about the future. I am concerned about what will happen if Medicaid, the federal government program which funds long term support services such as home care for most people with disabilities, is turned into a block grant program. I am concerned about how people with pre-existing conditions will access healthcare if the new administration is successful at it’s pledge to dismantle the Affordable Care Act. I hear stories like this NPR story about a 7 year wait to access services in Kansas, and I shiver, knowing I would be dead if I lost my services and had to wait 7 years for them to be reinstated.

But even though I worry about the future, I recognize the changes made in my lifetime which afford me access to the community in which I live. I was lucky enough to have been born in the United States at a time when education laws requiring free and appropriate education for all children were changing. As a result, I was “mainstreamed” and completed my education in the public community school alongside my nondisabled peers. I started college a year after the Americans With Disabilities Act, a crucial piece of civil rights legislation, was signed. I had access to paratransit transportation which allowed me to complete required internships and student teaching experiences. Throughout my professional life, I have had the right to request and receive reasonable accommodations which allow me to maintain employment. All of the sidewalks in my town have curb cuts, giving me freedom to explore and access my community without fear of not being able to cross the street.

Does discrimination still happen? Of course. I know there are times when I walk into a room of strangers and people notice the shiny red wheelchair attached to my butt, making assumptions about me based on that first visual impression of the wheelchair rather than me as an individual. At least once a month, someone tells me they would rather die than live as a disabled person, dependent on someone else to complete everyday personal tasks.

Are there still barriers to full participation? Of course. Yesterday I had to go to a local shopping mall and I was not able to leave when I wanted to because some idiot parked illegally in the access aisle next to my van, preventing me from deploying my van ramp and entering my vehicle. Lucky me, they were still parked there when the police arrived to issue a ticket. I hope the driver appreciates my holiday gift which comes with a $125 fine. ‘Tis the season for giving, after all.

Even though there are laws requiring places of public accommodation to meet accessibility standards, does that mean I can go anywhere I want? No, as I discovered last night when I stopped at a local business to pick up company gifts for my employer’s holiday party only to be greeted by steps. Granted, the staff were nice enough to bring the items out to me, but they won’t be receiving any more business from me or the company I represent. Money talks, and I refuse to give any of it to businesses which are not accessible to me.

Things are changing for people with disabilities, no doubt. Social media and technology make it easier for people with disabilities to share their own stories, in their own voices. I actually started today by helping to share tweets from Australian advocates when I woke at 5:15 AM my time and found the #criparmy and #pissonpity hashtags in several IDPWD posts. I debated writing my own post in recognition of IDPWD and ultimately decided I had to practice what I preach and use my own blog to signal boost the day.

I hope my regular readers will take some time this weekend to search the #IDPWD hashtag and read what disabled writers are sharing. There is also a Disability Blogger Linkup over at my friend Andrew’s blog, Disability Thinking. Listen to my friend Emily’s podcast, The Accessible Stall where she and Kyle tackle issues important to many in the disability community.

Why should you care about the issues we raise? Why do our advocacy efforts matter to you? Because everyone will either be a temporary or permanent member of the disability community at some point in life. And shouldn’t we all be concerned with basic human rights for everyone, regardless of ability?

30 Days of Thanks Day 21 – Guest Post by John McCosh

I met my guest blogger, John McCosh, and his wife Kristen at the Ms. Wheelchair American pageant almost ten years ago. Kristen was representing Massachusetts in the pageant and John was one of the amazing “Mr. Wheelchairs” as I called them that year. Our friendship developed over the next year during Kristen’s reign as the national titleholder. These days social media helps keep us connected. I am grateful John accepted my invitation to share a post for this year’s 30 Days of Thanks. After you read today’s post, you can follow John on Twitter: @johnmccosh.

The Perfect Wheelchair Trap

From our stateroom balcony, I watched the trail of crushed water our cruise ship left behind in a white boil. I was transported by the visual of the mesmerizing evidence of man made energy posted against nature’s historic depths trailed out atop an empty water horizon.

I thought about the liquefaction, the reinvention, the breaking, and the making of the earth; about Vesuvius and the changes the volcano would wreak; about Pompeii and Herculaneum. I thought about dusty Rome thanking the skies for rain.

Crossing the wine dark sea of the Mediterranean, I thought about how my home city, Boston, was more of a European city than I had, until recently, realized.

But I mostly thrummed with the emotion of having fallen into the perfect wheelchair trap.

My wife Kristen and I had spent the day in Marseille. The access coordinator on our cruise ship had said it couldn’t be done–there was no way for a wheelchair to get around, but, as we often do, we went anyway and made it happen.

We were dropped off by the shuttle bus at the mouth of the Old Port. The last bus back was leaving at 2:15 and all aboard the ship was 3:30. We walked down to the historic port and could see Notre-Dame de la Garde crowning the high elevation border of the city. We knew we wanted to make it there.

I wrestled up some old high school French lessons and found a hop on, hop off bus tour. We bought tickets and toured the city, passing the rock in the harbor that was the inspiration for the Count of Monte Cristo. We made it to Notre-Dame. I pushed and pulled the wheelchair along a rocky slope beside a long set of inaccessible stairs as we made our way to the foot of the church and looked out over the sweeping expanse of France’s second largest city and its largest Mediterranean port.

We were having a great day.

On schedule, we finished the tour and did some shopping back at the Old Port and made our way through the ancient part of the city. What we didn’t realize was that the Old Town made a steady climb, over a hundred feet above the sea.

I knew we were on track to get to our bus in plenty of time, but when we rounded the last corner, by the Eglise Saint-Laurent church we realized there was no way down. The ancient stone wall was a modern wheelchair barrier. There were long, winding sets of steps but no ramp or elevator.

But we still had time. We crossed the footbridge to the Museum of European and Mediterranean Civilisations, traveling right over our bus stop.

We had no idea the trap had been sprung. The French spoke enough English to understand we wanted to come in, but not enough to tell us you can’t exit to the street in a wheelchair.

Time was draining from the clock as we made our way through the building and the grounds. It was twenty minutes later when we realized we had to turn back!

We passed over the bridge again, back to the Eglise Sait-Laurent side—the side with out bus parked below. We considered backtracking through Old Town, but that was going to take too long. We zoomed down the road parallel with the bus route.

Kristen’s wheelchair was at full speed, me jogging beside. A quarter mile down the road we reached an elevator next to a huge set of stairs leading down to the lower elevation. It was broken.

A mild panic set in. We set off again, away from the bus, but parallel to the road to which we needed to descend. We checked a church for an access route as well as a set of stores, all the while making progress in the wrong direction, away from the bus. We finally made it to a thoroughfare, but there was still no path down in sight. We were stuck in a high place.

We were now more than a kilometer away from the bus. Even if we made it to the road we’d have to backtrack a considerable distance, and who knows what other barriers there might be.

We flagged down a woman who had just parked. We asked about transportation options, and she said it was difficult to get a taxi here, but she called anyway, our interpreter. The taxi said they were too far away but called another service.

We were forty-five minutes from all aboard. Our passports were on the ship along with most of our money and credit cards as we’d heard to be on the lookout for pickpockets and didn’t want to chance carrying them. Also, our two traveling companions were on-board with no cell service activated here. Our next stop was Barcelona, and I had no idea how we’d catch the ship if we missed it.

I spotted a taxi, my wife ducked out of site so the wheelchair wouldn’t scare him off. He stopped, and he spoke very little English but I was pretty sure he knew our ship. We broke the wheelchair down, taking out batteries, and collapsing the new wheelchair for the first time. We put it in the trunk and drove off.

We made the port, drove past the guards, and were virtually alone on the pier beside the ship with less that thirty minutes to spare.

On our balcony of the Norwegian Epic, I caught a reflection of my wife brushing out her long, blonde hair. We were on our way to dinner, and I knew I’d be thanking her for the adventure over dinner as we told our friends what had happened. And later, when we would walk the deck of that modern ship in an ancient world I’d think how much fun our life has been. I knew we’d talk about the trap we’d escaped and how thankful we both were to be on course together.

But for now I watched her traverse the low ramp out onto the deck, and I poured dark wine into crystal and proposed a toast to the sea.

A man in a baseball hat sits next to a blond woman wearing a black hat. They are in front of a fountain in Rome.
John and Kristen on their recent European vacation.

Sitting Will Kill You

A couple of weeks ago on a Friday morning, while scrolling through Facebook, a colorful image of empty chairs popped up in my feed along with the headline, “The Futility of the Workout-Sit Cycle.” I hesitated, then fell victim to the click bait and opened the link. Here’s a brief excerpt from the conversation in my head:

Why are you reading this? It’s just going to make you angry. I bet you the author concludes sitting will kill you. What are those of us who can’t help but sit supposed to do? Am I the only one who reads this and thinks ‘I’m screwed?!’ 

It’s the same conversation I have with myself whenever I read an article about some new study related to physical activity and health. Some group, in this case it’s the American Heart Association, issues a report such as this one with the catchy title of “Sedentary Behavior and Cardiovascular Morbidity and Mortality.” Then someone writes a summary, which appears in a magazine like the article I saw in The Atlantic. I read the article to see if there is any mention, just one tiny mention, of disability. Usually, there is not.

After reading the article in The Atlantic, I shared it on the Disability Visibility Project (DVP) Facebook page (full disclosure – I am a co-moderator of the page). Founded by the amazing Alice Wong, the DVP is an online community dedicated to recording, amplifying and sharing disability stories and culture. The DVP Facebook page is public, and the articles often lead to some interesting discussions about disability culture and identity, ableism, and media representation of disability. When I shared the article, I wrote:

Once again, a major medical organization tells us that sitting can kill you. As someone who has no option to stand, I always wonder if activity and exercise performed while sitting is even considered by these researchers. What are those of us who aren’t able to stand supposed to think when we see these articles? Yes, I know a sedentary life is not healthy. If that is the message, why not just say that and be inclusive of those of us unable to stand?

As the day progressed, and the comments continued, I realized I was not the only one to have these questions. Knowing I might write about this article, I asked if I could share comments. Some of the thoughts and comments are included here. While I have edited them down for brevity, I have kept the original language each person used.

Sparrow: “That’s an excellent point and one I confess I hadn’t considered. No one is researching active sitters and that’s a huge omission….Thank you for helping me re-think the whole “sitting is bad for you” assumption. I’m going to be more careful with my language around that now. I write ad copy part-time and had to write about a standing desk last week and would have written differently if I’d read your comments first.”

Luticha: “I have spoken to researchers about this. and basically it boils down to disabled bodies behaving differently than nondisabled bodies. So while they know that disabled folks have higher rates of obesity and heart issues the issues don’t stem from disability per se but lack of access to recreational sports or accessible gyms. And for those completely immobilized there isn’t much outside of controlling diet.”

Linda: “I dislocate things when I exercise (or even move sometimes), any part of my body… Even walking more than a few feet makes me dizzy and fall. The only way I can lose weight is to starve myself – even back when I could and did exercise for hours each week, it was like this. I ended up with anorexia, twice. Not planning on risking that again. Anything other than life saving surgery is way too risky, so lapband surgery etc is also out. I move my muscles when I can to keep the blood flowing and the nerves fresh, but other than that, what’s a girl with rotten metabolism in the best of circumstances to do? I like that this research is done, but I hate reading it…”

Shayna: “It’s not written well to consider people who use wheelchairs or have disabilities/illnesses/injuries that mean being upright for long, or at all, is not an option. But this part of the article talks about raising your metabolism to 1.5 times being completely still (which they describe as sitting or reclining). And that would mean that seated activity would count. So that’s good, would be nice if they had considered this and stated it explicitly though.”

Heather: “Good points shared and yeah, I usually read this kind of stuff with a grain of salt and long stop taking blanket advice like drinking 8, 8 oz glasses of water a day..way too much for this body, bladder response is like hell naw.”

I decided to search the original report from the American Heart Association and read it instead of just reading the summary article. Sure enough, on the second page there it was:

Therefore, we restrict this advisory to adults without ambulatory limitations.

Again the voice inside my head speaks up: Right – because who cares about the health of adults with ambulatory limitations? ‘They’re disabled and their health must be poor anyway, so why should we focus precious research dollars on them? It’s not like they worry about their health anyway, because they have such poor quality of life.’ That’s what you’re really thinking, right?

The report defines sedentary and gives examples of sedentary behaviors. Basically, anyone who does not get moderate-to-vigorous physical activity (MVPA) is sedentary. What is MVPA? According to the article (and the Sedentary Behavior Research Network), “MVPA is defined as activities that expend at least 3.0 metabolic equivalents.” In case you didn’t know (because I had to look it up too), one metabolic equivalent is the energy expended while a body is sitting at rest.

I may be sitting all day, but I am NOT sedentary! I can get an increase in heart rate simply by trying to reach for my phone when my Personal Assistant (PA) has moved it without thinking. I can break a sweat trying to transfer in and out of the driver’s seat in my van. When I go for walks around the neighborhood, my muscles are actively engaged trying to maintain an upright posture in my wheelchair as it rolls over uneven surfaces. Even sitting and reading can get my blood pumping – especially when I read articles which equate sitting with sedentary! But I was talking about the article…

The focus of the article was to explore the research to identify potential public health messages or guidelines to reduce sedentary behaviors. After describing the clear need for more research (do articles ever NOT say there is a need for more research?!), the authors conclude with this simple advisory, “Sit less, move more.”

Sure. I’ll get right on that. As soon as I figure out how to move more once I’m no longer sitting – given that sitting is my only means of mobility and I cannot independently move if I am not in a seated position.

Yes, I understand that what they really mean is “move more,” be more active, don’t sit and stare at the computer screen for hours on end without moving. Well, if that is what they really meant – why couldn’t they just say that? Why do the recommendations always involve an activity I (and millions like me) cannot do?

In 2015, the United States Surgeon General issued Step It Up! The Surgeon General’s Call to Action to Promote Walking and Walkable CommunitiesThe report aims to, “get Americans walking and wheelchair rolling for the physical activity needed to help prevent and reduce their risk of chronic diseases and premature death.” To help involve people of all abilities, the National Center on Health, Physical Activity and Disability (NCHPAD) launched the “How I Walk” campaign. The campaign is described on the NCHPAD website as a “movement to rebrand the word walking by challenging individual and societal perspectives.” In doing so, the campaign aims to focus on inclusive physical activity for everyone, recognizing that each individual has their own means of “walking” or moving.

A girl in a gray t-shirt, with a long, brown ponytail in a wheelchair walking through an accessible park on a beautiful, cloudless, sunny day. The text on top of the image reads: “Systems designed to meet the needs of people with disability will meet the needs of everyone”.

As someone who “walks” differently from most people, I appreciate this effort. Of course I realize the majority of people “walk” on two feet. I even use the term “taking a walk” to describe what I do when I head out to explore the trails and paths around my town. That doesn’t mean I don’t want people to consider how I “walk” when they are planning their public health interventions. When public health professionals consider all adults, and design systems and interventions which meet the needs of people with disabilities, they will meet the needs of EVERYONE. An inclusive public health infrastructure will benefit everyone, including disabled adults who are three times more likely to develop a chronic disease than nondisabled adults.

Now, if you’ll excuse me, I think I’ll go for a walk. I am now living near the Champlain Canal Trail and I feel like exploring before I die from sitting too long.

Summer Camp

Summer is here in upstate New York. Many of my friends are sharing social media updates about their children and summer camp. Seeing their photos makes me nostalgic for my own summer camp experiences.

As a child, I attended a summer camp for kids with disabilities. For seven years, my parents drove me to and from Wagon Road Camp so I could spend two and a half weeks with my “camp friends” while they had a (well-deserved) respite from me.

I loved camp for many reasons. Camp had fun activities such as horseback riding, swimming and music. Camp gave me opportunities to explore my own unique abilities and taught me how to instruct other people to best help me. Most importantly, camp provided me with my first peer network of other kids with disabilities.

Growing up in a small town, I did not have interactions with other kids with disabilities. At camp, every camper had a disability. There were other kids with muscular dystrophy, cerebral palsy, cognitive disabilities, sensory disabilities and more. Some kids were more independent than me, and some needed more assistance.

I had two best friends at camp – Jen and Steph (not the same Steph who is my bestest best friend). The three of us met in Yellow Cabin our first summer at camp and instantly bonded. When we were together again the next year in Pioneer Cabin (we were moving up!) we asked the counselors to move our beds so we could all be in the same corner. We maintained this arrangement when we aged out of Pioneer and moved to Purple Cabin, home to all the cool chicks in chairs.

Each of us required different levels of personal care assistance. Steph and Jen required more help with dressing and bathing but were more independent with mobility than I was. I was still walking, but climbing hills was difficult and I fell at least once each session. Jen let me use her power wheelchair for support, slowing down so I never had to walk alone. Steph needed help eating and I often sat next to her at meals so I could feed her if a counselor got called away. The three of us always helped each other as we could without hesitation.

Because Jen and I had progressive neuromuscular disabilities, our functional ability changed each year. We weren’t the only campers to experience this. Everyone had to adjust to friends who had new equipment, or needed different levels of assistance. And every year we started camp wondering which of our friends would not be coming back for the summer.

This early recognition of the frailty of life made me more appreciative of the opportunity to develop a crucial peer network. At home, I was unique – the only student with a visible disability in my small school. However, at camp I was surrounded by kids who were just like me. They understood what it was like to always arrive through another entrance, to have the new kids stare and point at you when you entered a classroom, to know a cold could develop into pneumonia which could be a death sentence.

Quite simply, at camp I was with others who “got it.” I didn’t need to explain myself and my reaction to disability. If I spoke about frustration caused by lack of physical access at a friend’s house or school event, my camp friends all nodded in understanding because they had been excluded from full participation also. It wasn’t that we were upset at our friends for living where they lived. We just didn’t like our disabilities preventing us from having the social lives we wanted, on the terms we wanted.

Together we learned important lessons of acceptance. As a diverse group of mixed disability types and racial backgrounds, we learned respect and tolerance for others. Sure, we were having fun in the pool, in the music building, at arts and crafts. We were also building our self-advocacy skills, discovering our independence, and finding our identities.

I would love the opportunity to escape the adult world and return to summer camp for a week with my friends. How relaxing to have help just arrive whenever I need it instead of recruiting, training, scheduling and managing my personal assistant staff. What I wouldn’t give to spend another week with Jen, who passed away almost ten years ago. There are so many times I long for her wisdom and guidance, the advice she used to dole out so freely during conversations in front of a bathroom mirror while I stood brushing and styling her long blonde hair.

Children with disabilities still go to summer camps across the country. I am depending on this young group to join the disability movement and move us forward towards equality. But this summer, I hope they just enjoy the freedom of being a camper with their friends.

On the Road Again

One of the biggest hurdles in my recovery from my broken femur has been driving. I drive an adapted minivan, a sleek silver vehicle I have named Clyde. Clyde has a ramp which allows me to drive my wheelchair in and park it where the middle row of seats would normally be. My driver’s seat is mounted on a transfer seat base which allows it to swivel. I slide out of my wheelchair into the driver’s seat, rotate the seat to the front, slide forward, and drive. At least, that is how the process has worked for the past fourteen years until my orthopedic surgeon restricted me from putting weight on my left leg after surgery.

Since February I have worked in physical therapy to regain strength and function with the goal of being able to independently transfer in and out of my driver’s seat. My apartment is located in an area not served by our local public transportation. The disabled paratransit service does not come to my apartment as I live too far from a fixed bus route.

If I cannot independently drive, I have three options. I can ride as a passenger in my own van while someone else drives. I do this when I have to, but I am a terrible back seat driver in my own vehicle. Another option is to have someone help me get in my van at my starting location and someone else help me get out of my van at my final destination. Or, I can have someone accompany me every time I need to drive somewhere.

I have used each of these methods to remain employed and engaged in my community, and I am appreciative of the friends and family who continue to assist me. But when you are used to the having the ability to get up and go whenever you want, scheduling your activities around someone else is limiting. Like most people who have been driving for decades, I am used to the freedom of movement which comes with the privilege of being a licensed driver who owns a vehicle.

In early April, I reached an important rehabilitation milestone when I successfully transferred in and out of my driver’s seat. I required assistance, but I did it! After a few practice sessions, I began to drive around my neighborhood. Within two weeks, I was driving to and from my office once or twice each week. My knee protested from time to time, and realistically I was unable to drive for more than 45 minutes at a time before the discomfort became too much of a distraction. But I was driving!

Behind the wheel for the first time in April.
Behind the wheel for the first time in April.

This past Tuesday I reached an important milestone when, for the first time since January, I transferred into my driver’s seat and put on my seatbelt completely independently! It took me a good five minutes, and there were a few choice words flying out of my mouth from time to time, but I did it!

I still require assistance to get out of my driver’s seat and get back into my wheelchair, so I am not completely independent with driving. I don’t know if I will reach that status given the changes in my leg. This may be as far as I get with my rehabilitation when it comes to driving. I plan to make the move to driving from my wheelchair using hand controls within a year, so I just have to find a way to function until then.

For now, I know if I had to get somewhere in an emergency, I could get in my van and go. I might not be able to get out when I get there, but that’s a problem for another day.

My experience has given me a new perspective on the transportation difficulties people with disabilities face on a daily basis, particularly those who live in suburban or rural areas. I have not been as strong of an advocate for transportation as I could be. I plan to change that going forward. The push for community living can only be successful if people have access to their community and accessible transportation is a crucial component of independence.

In the days immediately following my discharge from the rehabilitation hospital while I was relearning how to function at home, I wondered if I would ever be able to take a road trip and spend the night anywhere other than my apartment. I enjoy traveling and the prospect of not being able to explore the world was frightening and depressing.

This is Memorial Day Weekend in the United States, the unofficial start of summer. I have spent every Memorial Day Weekend in my hometown except the year I was an exchange student and the year I was in the hospital after my gallbladder surgery. I was determined to find a way to make it home this weekend. Once I transferred into my driver’s seat on Tuesday I knew it would happen.

Yesterday I drove my van down the highway in the bright sunshine. I rolled down the window, cranked the music and sang the songs from my “move it” playlist with the wind blowing on my face. As I rolled to a stop at the end of the exit for Bainbridge, I couldn’t help smiling in triumph.

Sure, there is more work to do in my journey towards independence. But this weekend, I am content to be on the road again.