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?

A wooden boardwalk extends over water. The side railings are shades of green and yellow. There are mountains in the distance under a partially cloudy sky.

Saying Yes

I was born with a progressive neuromuscular disease. When I was diagnosed at age three, doctors could not predict how long I would walk, when I would need to use a wheelchair, or even how long I would live.

My parents chose to raise me as a person with capabilities, rather than limitations. Sure, there were activities I could not do. This did not excuse me from chores I could perform, such as washing and drying dishes, or setting and clearing the table.

I was raised to be an optimist – to look for possibilities when others might see challenges, solutions when faced with barriers.

They were shaping what would become my manifesto.

I left my small upstate New York hometown on August 16, 1990, to live for a year as a Rotary Youth Exchange Student in Tasmania, Australia. Thousands of students participate in this international exchange program each year. However, I was one of the first disabled students to successfully complete an exchange year through Rotary International, and the first wheelchair-using student in the program.

Living on the other side of the world for ten months as a teenager taught me important lessons about tolerance, culture and advocacy. But the most important lesson came from advice I received the night before I left home when our neighbor, Doctor Kenneth “Doc” Benson, DVM, came over.

Denise, you are going to be invited to many events this year. You will have lots of opportunities to see new things and meet new people. Whatever happens, say yes. Do it all. You never know if you’ll get another chance.

Say yes. Do it all.

During my exchange year, I said “YES!” to every invitation. I went to dinners, barbecues, parties, sailing trips, basketball games, museum tours and concerts. I traveled from the island state of Tasmania to mainland Australia three times. I toured Tasmania with fifteen other exchange students and then toured mainland Australia with eighty-four exchange students. It was one of the best years of my life.

By the time I returned to the United States, saying yes had become a way of life. I have a wealth of stories to tell because I chose to say yes when others may have said no.

Want to go for a spur of the moment ride to New York City on Saturday rather than sit in the dorms? Sure!

Travel to Rhode Island to watch the local hockey team win a play-off game on the weekend of college graduation? I’m in!

Enter a national competition for women who use wheelchairs? Why not – sounds fun!

Sing at an event in Washington, DC on the eve of a predicted snow storm even though you might get snowed in? It would be an honor!

As my physical capabilities have declined, it has become more challenging to say yes. I still say yes as often as possible, but doing so now requires more effort and planning. In 2014 when I was asked to return to Australia to speak at a 2015 conference, I said yes on instinct without thinking. Thankfully, I had a year to prepare. It took months of research, planning and the assistance of many to make the trip a reality.

Living with disability makes saying yes an exercise in problem solving and strategic thinking. Yet, it is not impossible to say yes even when one relies on others for personal care assistance.

I have required more assistance for over a year due to a sharp decline in my abilities following last year’s femur fracture. I have not been able to drive independently for months, and may not be getting a new van until the end of this year. I have been constantly recruiting and training new Personal Assistants to meet my basic needs. It has been one of the most challenging periods in my life.

It is tempting to just withdraw while I wait for more independence. I have not always wanted to say yes because sometimes it is just easier to say no. It takes less effort to say no. It costs less time and money. It is less stressful.

Whenever I feel like saying no, I am transported back to the summer of 1990. I am sixteen years old again, about to leave for what will end up being the most influential year of my life. I hear Doc’s voice once more in my head and I am reminded that I have no regrets about missed opportunities.

Whatever happens, say yes. Do it all. You never know if you’ll get another chance.

The next time you find yourself faced with opportunity, give yourself permission to say yes. It may not be your first instinct. It may not be easy. It might take planning and preparation, and even then it may not be worth it.

But you won’t know until you try.

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?

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.

30 Days of Thanks Day 12 – Sharon

As a woman, I believe one of the best gifts you can give yourself is a network of other strong women. This is particularly true if you are not in a committed romantic relationship. I’m not talking about friends who complain about romance or the lack of respectable partners (although that does have its time and place). I mean the kind of women who nurture your own femininity, who remind you that you are more than just someone’s wife, girlfriend or partner, who tell you that you are enough as you are when you are faced daily by the messages that you should be something other than who you are.

I met Sharon on a Friday night over ten years ago when my sister Sandy invited me to join the two of them for happy hour after work. I was drawn in by her warm smile and genuine laugh. At the time we met, all three of us were actively dating – or attempting to. We swapped stories of dating disasters over glasses of wine, and pledged to keep in touch.

Over the years, my admiration and appreciation for Sharon has grown as we have experienced life together. Sharon is honest and matter of fact whenever I discuss obstacles or problems. She is generous and thoughtful. Sharon was there to comfort Sandy and I when our sister and brother-in-law passed away. She was an example of strength and perseverance when facing her own health matters. And this year, when I was stuck in a hospital bed, Sharon was a regular visitor.

Sharon came several times to visit me in the hospital. Her presence was a welcome distraction from the pain and discomfort which seemed to be never-ending. Sharon brought me tissues when I complained about the flimsy hospital issued ones. She raided the unit refrigerator for cranberry juice when I was diagnosed with a urinary tract infection. But the act of kindness I appreciated most was Sharon’s willingness to help me eat.

If you have never been fed by someone as an adult, you may not understand how vulnerable you can feel to rely on another person for this assistance. Will the person helping you try to shovel large amounts of food in your mouth? Will they keep going if you are still hungry? Will they become annoyed if you need to take a rest? Will they try to force liquid down you throat when you still have food in your mouth, increasing the risk of you choking? Will they wipe up any spills or leave you with food scraps on your face?

Because of my injury, I was not able to get into a position where I could independently feed myself while in bed. I was content to just ignore food for the first few days, but eventually my appetite started coming back. My lack of arm strength meant I was unable to lift a fork or spoon to my mouth, even when I was hungry.

One day Sharon visited and found my lunch tray sitting on the table next to my bed. When I told her I had eaten all I could manage to do on my own, she rolled up her sleeves and picked up the fork. Smiling, she asked if she could help me eat a bit more. I was grateful she asked, rather than just jumping in  to help. With Sharon’s assistance, I ate the rest of the soup and chicken tenders and felt full for the first time in days.

Sharon was the perfect meal companion, a role she took on more than once during my hospital stay. She was attentive to my cues, never rushing me or forcing me to eat until I was ready. She would keep up conversation while I chewed, telling me stories of her sons or events taking place around the region. Whenever I showed signs of fatigue, Sharon would pause and wait for me to be ready without showing any impatience. She never left me with scraps of food on my face or sheets. Sharon brushed aside my thanks, telling me she was just happy to be useful.

Sharon is the type of friend who would not want or seek attention for doing something she feels is just the right thing to do. It is for that reason that I appreciate the kindness and patience she showed me while I was stuck in a hospital bed earlier this year. I was grumpy, grouchy and demanding, but she returned to my side to help alleviate some of the darkness and despair I was feeling.

Thank you Sharon, for your friendship. I treasure the laughs we have shared, and look forward to being able to join you for more fun times when I am once again independently able to get out and about. We have some catching up to do!

Two Caucasian women seated side by side. The women on the left is wearing glasses, a black shirt and a gold shawl. She has brown hair.  The woman on the right is wearing a black shirt, a necklace and silver watch. She has blond hair and is leaning on the right side of the brunette with her hand on the other woman's shoulder.
Sharon and I celebrating October birthdays a few years ago.

Because I’m Happy (At Least, I’m Trying)

This year has not been a happy year for me. Sure, there have been moments of laughter and joy. But if you look at the year as a whole, I have been depressed, cynical, sarcastic, moody, and angry. I know I have not been myself and recently I’ve been hit upside the head by what is really happening.

Since my femur fracture in January, and throughout the subsequent months of rehabilitation, I have not bothered with much beyond the basics when it comes to my daily habits. Most days, if I’ve been able to get out of bed, pee, and get dressed, I’ve been content to call the morning a success. Bonus points for the days I’ve managed to shower!

I am not a vain person, but I have been blessed by the hair gods. My hair is thick and pretty much does whatever I ask it to do. Every now and then I find a stray gray, but nothing that makes me want to rush to color it. As I dried my hair on Wednesday while preparing for a work event, I realized it had been at least six months since I took the time to dry and style my hair. Unless you count a pony tail as a style, my hair hasn’t had much of a style this year.

Friends and family know I can be counted on for lipstick. I don’t wear much makeup, but I always have at least four or five lipsticks with me. A few years ago at a family reunion, I provided various shades to all my aunts and many cousins before we took the group photo. Yet, I can count on one hand the number of times I have worn lipstick in 2016.

I love music. There are over 6,000 songs in my iTunes library. I am usually singing or humming, and most of the time I don’t realize it. This always makes for interesting times at work when I am not aware I am singing at my computer while people are trying to do work around me. But since January, I have rarely listened to music. Even sadder, today I realized I have not even opened iTunes on my computer since I moved in August except to download audiobooks from the library onto my iPod.

For the past twenty five years, I have treated myself to new perfume at Christmas. Since 1998, my signature scent has been “Happy” by Clinique. I like the scent because, well, it makes me happy. Friends say it’s “very Dee.” Wearing one spritz per day, it takes me about a year to finish a bottle. Today, I looked at the bottle of perfume I purchased last December and realized I have not worn any perfume this year.

I am an extrovert and draw energy from being around other people. Every time I have completed a Myers-Briggs Type Indicator personality inventory, my scores on the extroversion/introversion scale have been the same – total extroversion, not a single introversion answer. I draw energy from being around other people and seek out social opportunities. I nurture friendships and do my best to connect with others on a regular basis. Some people tease me for having too many friends. Not this year. I haven’t gone out to happy hour since last December. When I have free time, I don’t call friends or seek out opportunities for socialization.

These observations made me realize I am falling back into the trap of withdrawing from the world and nurturing my relationship with grief. I have a comfortable relationship with grief. I stoically cultivated it four years ago as I trudged through the “year of funerals.” Fourteen funerals in thirteen months can do that to a person. I became good at sitting alone with my thoughts, ignoring the habits which bring me joy and make me feel nourished and alive.

I’m walking down that path again now and I need to turn back before I go any further. This year, I am not grieving the loss of loved ones or friends. Rather, I am grieving a further loss of independence and mobility due to my injury, the loss of my ability to manage daily pain to a level which does not interfere with my daily routine, the loss of my ability to drive independently, and the loss of trust in some of my Personal Assistant staff.

When I am mired in grief, my daily habits change. Priorities shift. I compromise, trying to balance what I would like to do, what I need to do, and what I actually have the energy to do. Instead of practicing daily gratitude, I engage in destructive list making. I expound on all that is negative, ignoring all the good still surrounding me.

Today, I pledge to make a shift in my daily habits. I will resume my daily writing. I will start wearing perfume and lipstick again. I will practice daily gratitude. I will schedule time with friends and reach out to those I have been avoiding. I will enroll in that writing class I have been considering. I will submit that essay I have been working on. I will sing songs that always make me happy.

Because sometimes when you pretend to be happy, you find out you really are happier than you think you are. And Straight No Chaser singing one of my favorite songs really does make me very happy.

 

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.

Why I Have Not Written About Japan

On July 26, a day when I should have been celebrating the anniversary of the Americans with Disabilities Act, I was attempting to process the news of an unimaginable hate crime. Instead of gathering with my disabled peers in joy, I was sobbing as I imagined what the victims had experienced during and after the massacre in Sagamihara, Japan.

You haven’t heard about the massacre? I would bet you aren’t the only one.

Around 2:20 AM, a former employee of a residential facility for the disabled in Sagamihara committed the largest mass killing in Japan since World War II. He broke into the building, tied up the staff members, and stabbed the disabled residents, killing 19 and injuring 26. The victims ranged in age from 18 to 70, both male and female. Most were stabbed in the neck. throat, and chest as they slept in their beds.

I waited for the “mainstream media” to cover the story. After all, hate crimes and terrorist acts have been receiving a great deal of attention. Nice, Brussels, Orlando, Paris, Munich – I’m guessing you recognize recent stories related to these places.

Instead, I read stories like this Japan Times article which described the crime as a “mercy killing.” According to the article, the killer believed he was providing mercy to the victims’ caregivers because “it would be better if the disabled disappeared.”

There was no mass outcry of horror and disbelief. There were no large expressions of sympathy and solidarity.

Then, slowly the messages began to come from the worldwide disability community as they wrote social media updates, blog posts and essays. Reading them, I was grateful for these brave writers who took the time to capture the loss, rage, sadness and fear so many of us felt. I was able to share their work when I lacked the energy and stamina to compose my own response to this terrible act.

I tried to write. I attempted to find words to express my emotional response. If ever there was a time when I needed to add my voice to help draw attention to an event, this was it. But whenever I tried, I got stuck in the same mental prison.

Those nameless victims? They were me. If I had been a resident in that facility, I would have been one of those who went to sleep one night in July only to have my throat slashed while trapped in my bed, unable to escape injury or death.

The victims’ only crime – my only crime? Being born disabled. Less than. A burden. Incompetent.

Murders of disabled people are incorrectly called “mercy killings” by media outlets because of the ableist belief that disabled lives are so invaluable or unbearable that our murders are acts of mercy. Don’t believe me? Remember Tania Clarence – the mother who killed her three disabled children and was only charged with manslaughter? I wrote about the case in this post. How about the mother who received a charge of involuntary manslaughter for VOLUNTARILY poisoning her disabled daughter and killing her? If the victims of these crimes had not been disabled, would the charges have been more severe?

Writing about the massacre has also been difficult because my own personal care situation has been strained for the past month. Last summer – almost exactly a year ago – I wrote about how life is different when personal needs are met. Just this past month, I have had two Personal Assistants (PAs) out of work for hospitalizations; one out due to a broken foot; one out due to complications with her pregnancy; and one out due to a family emergency. These are legitimate reasons to be absent from work. But my need to use the toilet, get dressed, eat, get in and out of bed, work, live – insert action of your choice here – does not stop just because I do not have my regular staff available to work for me. Yes, I have other staff but they are not always available to work at a moment’s notice. If it were not for the support and assistance from family and friends, I would have no choice but to rely on institutional care like my disabled peers in Japan.

Facing a crisis in personal care, knowing that I would be institutionalized without the generosity and kindness of a support network I have carefully cultivated, and reading about the murder of innocent disabled people in a setting where they should have been safe – well, writing has not been a priority in my life. It is a shame, because I need the therapeutic outlet of writing even more when I am stressed and emotional.

I really need to write. I am a writer – and writers need to write.

So, I set a goal to post something – anything – about Japan this weekend. I am not certain this post captures everything I want to say about it, but at this point it is the best I can do. To the friends and family who have reached out to me since the tragedy in late July, I appreciate your kind words. Thank you for sharing stories and for helping to call attention to this tragedy. We owe it to the victims to continue to fight against the stigma and negative attitudes towards the disability community. We must ensure all life is valued, so nobody has to fear that society views their life as a burden or expendable.

Because that disabled person trapped in an institutional bed? That person is not just me. It’s you.

In Appreciation of My Forever Friends

My hometown of Bainbridge, New York, is small. According to the most recent census, the population is approximately 3,000 people (of which 1,300 live in the village of Bainbridge). In a town like Bainbridge, everyone knows everyone else. I may not have appreciated growing up in a small community during my teen years, where I was one in a class of just 66 students, the youngest daughter of the manager of the grocery store. But things change as you mature, and now I am grateful I had the chance to grow up surrounded by a group of people who are my forever friends.

My forever friends have known me, quite literally, all my life. I met my best friend Stephanie at the summer playground program when I was three. Erin’s family moved across the street from my family when I was four. Sheri and I convalesced together when we both had the chicken pox in kindergarten. Rebecca, George, and I used to ride to and from religious education classes throughout elementary school. Allison volunteered to spend recess with me in third grade after I had surgery, and then was in almost every single class with me for the next 8 years. For most of high school, I saw the same friends all day as we moved from class to class.

After high school, some of us moved away for college and careers. Some stayed to make their lives in town. Though I no longer have daily contact with most of these friends, they are still the people I turn to when I need to be reminded of who I am. These are the friends who will challenge me if I say something out of line. They will question me if I appear to be acting out of character. They are quick to remind me of my importance in the world when I am facing difficult times.

This year I have come to recognize how much I value their presence in my life. During my hospitalization in January, their support and encouragement gave me the energy I needed to continue my recovery. Knowing they believed in my ability to endure fortified my resolve when the pain was too intense. Cards, emails, and letters seemed to appear whenever I was low and needed a lift.

When I was younger, the people who came back to town for their class reunions with their forever friends always seemed more mature than I currently feel. I always assumed they had life’s questions all figured out. I never imagined one day I would be the one going out to dinner with my school friends, laughing over memories, reminiscing over a meal and drinks on a summer night.

But that is exactly where I found myself on Saturday. Last weekend I gathered with some of my forever friends to commemorate 25 years since our high school graduation. Sitting at the table, laughing about summer marching band trips, prom, and favorite teachers, I was reminded how fortunate I am to have my forever friends. Time passes between our visits, yet we are held together by our shared history. We have adult lives now, and are spread in different cities and states, yet thanks to social media it is easier than ever to remain in contact. In fact, most of them will probably read how I feel about them when this post appears on Facebook.

I am most thankful to my forever friends for always accepting me for me, regardless of changing physical abilities. My forever friends always found ways to make sure I was included in activities. When my Brownie troop marched in the Memorial Day parade, my fellow Brownies pulled me in a wagon so I could be in the parade too. When we played games during recess, my friends allowed me extra time to “run” so I could play along with them. Friends pushed my wheelchair during marching band season so I could fulfill the requirement to march (it’s hard to play an instrument and wheel at the same time). They danced with me at school dances and never questioned why I was there. It wasn’t until I left high school that I encountered the “oh, it’s great to see someone like you out having fun” reaction on a dance floor.

Now that I have a disabled peer network, I have learned about the shame and isolation many of them experienced as youths. I never felt that. Sure, I was picked on by classmates. I remember being called names by other kids in school. But I also remember my friends sticking up for me, telling me I was better than those who might try to put me down. I never faced malicious bullying as a child.

Aristotle wrote, “In poverty and other misfortunes of life, true friends are a sure refuge. They keep the young out of mischief; they comfort and aid the old in their weakness, and they incite those in the prime of life to noble deeds.” My true forever friends may not have kept me out of mischief as a youngster, but their continual comfort and assistance enrich my life in many ways.

Too often, we forget to express our gratitude to our friends because their friendship has been a constant in our lives. I have used my 30 Days of Thanks posts to publicly thank those who matter to me. How about you? When was the last time you wrote a thank you note to a friend? Why not take a moment to brighten a friend’s day right now? I guarantee it will make both of you feel better.