A lady with brown hair is in a pink sleeveless t-shirt out walking in her wheelchair on a bright sunny day. She has a towel on her lap and gloves on her hands. The text on top of the image reads: “Rethink the way you speak about walking!”

Exercise for Every Body

Last month, I wrote this post in response to an article about walking as a means to improve health and fitness. When I hit “publish” I had no idea what type of reactions, if any, my readers would have. My fellow wheelchair-using readers all said, “Right on!” Or something very similar.

Then, more and more people started asking me about options for physical activity for people with disabilities. I started to provide information when a friend posted this comment on my Facebook page:

Why don’t you research and write your own article on fitness for those with disabilities?

Before long, the idea took hold. Why don’t I do more than just complain? While I am not an expert on physical fitness, in my prior career I did spend time researching and writing about health and wellness for people with disabilities. So, here goes my attempt to tackle this topic. Keep in mind, I am not a person who loves to exercise. In fact, I am pretty much a person who would rather do data entry into an Excel spreadsheet before exercising. And I HATE data entry.

Whenever anyone asks me about fitness for people with disabilities, I start by referring them to the National Center on Health, Physical Activity and Disability (NCHPAD), a “public health practice and resource center on health promotion for people with disability.” NCHPAD works to improve health and wellness for people with disabilities through increased participation in physical and social activities. Their website is a wealth of information and a great resource for people of all ages and abilities.

I really like their campaign How I WalkThe movement aims to rebrand the word ‘walking’ so everyone is included in the many walking initiatives. Through images, like the one below, videos and social media messaging, the campaign hopes to show how walking is an activity for people of all ages and abilities – even those of us who cannot “walk” in the traditional sense of standing on two feet and putting one foot in front of the other.

A lady with brown hair is in a pink sleeveless t-shirt out walking in her wheelchair on a bright sunny day. She has a towel on her lap and gloves on her hands. The text on top of the image reads: “Rethink the way you speak about walking!”

I especially like this campaign because I regularly go for walks in my community. From April to October, as long as the weather allows, I spend at least part of every weekend taking walks on many of the local bike paths and trails. My favorites are the Old Champlain Canal Trail and the Erie Canal. Parks & Trails New York has a great interactive map for people who want to explore the Erie Canal, which stretches across New York State. I enjoy being out in nature, and the trails allow me an accessible opportunity to explore. And while I may not be actively wheeling a manual chair, the simple act of maintaining balance and equilibrium on an uneven surface still requires muscle use. Trust my knees and hips on that!

Photo of a walking shaded walking trail next to a canal. Tall green deciduous trees line both sides of the path.
One of my favorite paths, the Old Champlain Canal Path is mostly accessible.

Sometimes people hear “exercise” and immediately think “gym” or “fitness center.” While I do have many disabled friends who do exercise regularly in fitness centers, that has never really been an option for me. My physicians have discouraged extended land exercise for me, so the benefits of joining a gym do not merit the expense. Instead, with the help of my Personal Assistants (PAs) I perform regular stretching at home and use exercise bands a few times a week.

The one activity my doctors and physical therapists agree is great for me is aqua therapy. Three mornings each week, I go to a local therapeutic pool and complete an exercise routine focused on strength and cardio. I’m not going to lie – I love the pool but I still hate exercise. I go regularly because it reduces pain and makes me feel better to spend three hours each week in warm water. I am privileged to have the income to be able to afford a membership, and PA staff who can accompany and help me. These are obstacles for many of my disabled peers.

Exercise doesn’t need to be organized or expensive though. I have friends who exercise by turning up the radio in their house and dancing to their favorite tunes. Other friends of mine count on their intimate moments with partners to burn some extra energy.

Any movement that gets your blood flowing and heart pumping is better than no movement at all!

Telling My Medicaid Story

For several months, my disabled peers have been sharing their personal stories about Medicaid. I read Vilissa Thompson’s story and Jensen Caraballo’s story, both published on the Center for Disability Rights blog. I watched the videos published on the Disability Rights Education and Defense Fund website. I cheered for my friend Alice Wong when her OpEd “My Medicaid, My Life was published in the New York Times.

I have written about Medicaid on this blog before. When I was participating in the Redefining Disability blog challenge, I wrote about it here, and I also wrote about how my need for personal assistants impacts my life here, and I wrote about it again here.

I wasn’t feeling the urge to write about Medicaid again but then last week happened. On Thursday, United States Senate Majority leader Mitch McConnell (R – KY) released the Better Care Reconciliation Act of 2017 (BCRA), the Senate’s version of legislation to repeal the Affordable Care Act. The majority of the bill is focused on changes to Medicaid. There are several websites that provide summaries of these proposed changes, such as HealthAffairs.org, the Kaiser Family Foundation, and NPR.

Did you catch the other big news story in US media on Thursday? Did you notice the story that appeared on CNN, MSNBC, ABC and many local affiliates across the country? The story that was later featured in Rolling Stone, TheHill.com, USNews, and Pacific-Standard among others?

For a few days this week, disability made the headlines thanks to advocates who literally put their bodies on the line. Thursday morning, in anticipation of the release of the Senate bill containing cuts to Medicaid, a group of about sixty disability rights activists gathered outside Senator McConnell’s office to stage a “die-in.”

Those gathered are members of ADAPT, a grassroots disability organization that has been fighting for disability rights since the 1970’s. What – you’ve never heard of ADAPT? Maybe you missed the 20 minutes Rachel Maddow spent on her show Thursday explaining ADAPT history and providing perspective on the disability rights movement. In case you didn’t catch it, you can watch it now. It doesn’t matter if you’re not a fan of Rachel (I’m not a fan either), just watch the video.

I am young enough to remember life before the Americans with Disabilities Act (ADA). I remember being carried on and off buses by my friends on school trips because we did not have an accessible bus. I remember taking walks and zig-zagging across the street every few blocks because not every corner had a curb cut ramp. I remember the sense of relief when I learned I could not be fired because of my need for a reasonable accommodation from my employer. I remember telling my parents about a new program called Consumer Directed Personal Assistance – a program that would allow me to hire home care workers who would assist me with my basic care needs when I was no longer able to perform these tasks independently. I remember my mother tearing up as she realized I would be able to manage my care in the community.

I live in the community because Medicaid, the program threatened by the BCRA, pays for the Personal Assistants (PAs) who serve as my arms and legs. I often tell people that my PAs allow me to be independent, but what does that really mean? Indulge me as I get to the nitty-gritty.

It means my PAs come into my house every morning and start by uncovering me when I am ready to get out of bed, and then sit me up. They move my wheelchair next to the bed then transfer me from the bed to my wheelchair using a slide board. Then they transfer me from my wheelchair to the bedside commode so I can go to the bathroom. When I am finished, they take the bucket to the bathroom where they empty it and clean it.

If you can no longer independently use a toilet, who is going to dump your bucket? Who’s going to wipe your butt if you have to use a bedpan? Who is going to try not to gag when you have diarrhea or when your period comes on heavy and unexpectedly?

When you become disabled, injured or old, your need to relieve your bowels and bladder will not magically disappear. You will still need to pee and poop. When you do go, who will help you?

Are you going to depend on your spouse? That may work if you are married to someone willing to assume the role of caregiver. Maybe you’ll depend on your children, assuming you have them and assuming they live close enough to come help you every time you need to go to the bathroom.

How many times each day do you like to use the toilet? Would that number change if you needed the assistance of another person? On good days, I use the toilet four times. Most days, it is only three. With planning, I can get by with two.

This choice – the choice to determine how many times per day I wish to urinate – is a choice I have because I do not live in an institution. I am not forced to live in a nursing home where someone is tracking the number of times I use the toilet, or how much fluid I drink and void each day. I am not viewed as a patient in need of medical care, but a person with dignity and liberty.

But without Medicaid, the funding source for long-term services and supports for millions of disabled Americans, this choice is gone. To better understand how Medicaid works to make freedom and liberty possible, read this great summary by Rohmteen Mokhtari.

Take away Medicaid and you take away our liberty. Take away Medicaid and thousands of us will face no alternative but to turn to institutional care just to meet our basic needs. I am not the only one predicting this. Read this article from The Guardian to learn how others have been impacted by Medicaid and why they are fearful of the BCRA.

I am fortunate. I have friends and family who have rallied to my side in the past when I have needed short term assistance. I have friends and peers who are willing to protest for our civil rights, who are willing to be lifted out of their wheelchairs and carted off by police. I have a platform that allows me to tell my story.

And as the late disability rights activist Harriet McBryde Johnson wrote, “Storytelling is a survival tool.”

 

 

Being Number Six

All my life, I have been referred to as “number six” by my father. Dad used numbers to describe me and my five older sisters whenever he spoke about us to others. Sometimes we would be at a party and he would call us over to introduce us to a friend.

Have you met Caroline? She’s my number five daughter. Caroline – come over here!

When my parents were first taking me to medical appointments to determine the cause of my disability, Dad always pulled out his wallet whenever the nurse or social worker expressed astonishment upon learning I was the youngest of six girls. Beaming with pride he would flip through the photographs in the plastic sleeves, naming us and offering a tidbit of information he felt important to share.

That’s Susan, number one. She’s pregnant with our first grandchild. And Mary Jane, number two. She’s studying to be a violin teacher.

Photo of six white women varying in age and their elderly parents. One of the women, the author, is seated in a wheelchair.

Dad always said he didn’t care what jobs we did when we grew up, as long as we we did them to the best of our abilities and helped others along the way. When he bragged about us to my orthopedic surgeon, he was as proud of Donna as he was of Sandy.

Smart girls, both of them. All of my girls went to college, and hopefully Denise will too. 

Dad had his favorite stories about each of us. When we gathered as a group for a family dinner or celebration, he would reminisce and share his memories with whoever happened to be around the table. It didn’t matter if you had heard the story many times before, you still laughed when he talked about the time he sent the “five girls” (how he always spoke about my sisters before the time I arrived) outside with a gallon of white paint so he could watch a football game in peace and quiet while they painted the fence. My mother arrived home later that afternoon to find my sisters had used an entire can of paint on just five feet of fence, but also on the grass, rocks, their hair and clothes.

You should have seen her face! She was fit to be tied. You girls were covered in paint.

I was an adult before I realized how much Dad had worried about me. As a child, I never knew he was anxious about whether I would become ill, or if my disability would shorten my life. Then last year at our annual DiNoto cookie bake, he took my hand as I was telling him about work and gave it a squeeze.

Well Niecie, I guess I don’t have to worry about you dying young anymore.

I was stunned, but tried to laughingly reassure him I was doing just fine and was now too old to be considered young if I were to die. While I squeezed his hand in return, I asked if he was still truly worried about me that much.

When you were little, they couldn’t tell us much about what to expect for you. I’m your father. I worry about not just you, but all my girls, all the time. It’s what dads do.

That was the last time I saw my father in person, the last time I held his hand, the last time he pulled me in for a hug and kiss.

Three weeks later, my phone rang as I was returning home from my early morning swim on a cold December morning. When the caller ID on my phone read “Mom and Dad” but Caroline’s voice came through the line, I knew something was wrong. Caroline’s voice cracked as she told me Dad had died. I don’t remember much of the rest of the conversation, probably because some of the other sisters were trying to call me and my phone kept beeping with incoming calls.

The day passed in a blur as I made plans to leave for a week in my hometown. I washed and packed clothes, wrapped Christmas presents and prepared cookie trays while fielding calls and texts from friends and family. Eventually I crashed in bed, exhausted from crying on and off all day. I fell asleep reviewing my mental list of what was left to pack in the morning.

I dreamed about Dad that night. He was getting ready for a fishing trip. I was a child, standing next to the pile of his gear, watching as he packed the back of his truck. When he was done, he slammed the tailgate. Turning to me, he smiled and tucked my hair behind my ear.

Don’t worry Niecie. I’ll bring back enough for all of us.

 

 

Feeling Out of Shape?

I was scrolling through my Twitter feed last night looking for inspiration for a blog post when a Washington Post headline caught my eye.

Feeling out of shape and fat? Here’s how to fix that: Start walking.

I retweeted the article, which you can read for yourself here. Without reading it, I wrote, “Once again, I’m doomed. #wheelchairproblems”

Feeling a bit guilty for retweeting an article I hadn’t actually read (something I never do) I went back and clicked on the article. Maybe they discussed alternatives for people, like me, who are not able to walk. Perhaps they were inclusive of people of all abilities and I was being hasty in yelling at my monitor about the ableist headline.

I read the article, which describes EverWalk as, “an initiative that aims to get Americans on their feet. Anybody can commit to walking at least three times a week by signing a pledge on EverWalk’s website (at everwalk.com).”

There WAS one mention of disability towards the end of the article. “If you’re in a chair, pledge to do the roll.”  That may work for someone who uses a manual wheelchair, but what about someone like me who is no longer able to self-propel a manual chair?

Getting frustrated, I searched the EverWalk website and found lots of photos and encouraging images of people walking. I did not see anyone with an obvious disability. I did not see anyone who looks like me.

So, I did what I have never done. I took to Twitter. I responded to the article tweet, and directly tweeted EverWalk with my main question. What about those of us who care about health and fitness but can’t “just walk?” As of the time I finished writing this Sunday night, I have not heard any response and I really don’t expect to.

I applaud Diana Nyad and Bonnie Stoll, the founders of EverWalk, for wanting to do something to help heart disease and diabetes, diseases which can be caused by our nation’s sedentary lifestyle. However, I wish their program were more inclusive of people of all abilities. If the premise is for people to “move more,” then why not include disabled people moving in the images on the website?

When the United States Surgeon General launched the “Step It Up!” campaign, the report and accompanying images included people with visible disabilities. This important inclusion meant I was less inclined to react with disdain and sarcasm when I viewed the promotional video which had images of people who looked like me.

Sure, physical activity is important for health. Most people are able to walk, and encouraging walking makes sense because it is an activity which does not require expensive equipment.

But not all of us can walk.

We care about our health and fitness too. Yet, when you leave us out of your campaigns, you send us the message that we can’t be successful in our fitness goals. You tell us we don’t matter.

That message really gets me out of shape.

Visibility

When I was president of my college Alumni Association, one of the best perks of the “job” was having the honor of leading the procession during commencement. For four years I, along with the current president of the Student Association, was the first person to walk through the entryway when the band started “Pomp and Circumstance.”

Photo of two women wearing academic cap and gown.
Starting the procession of graduates at my Alma Mater made me visible – and gave me the chance to reconnect with former professors and mentors.

I gladly performed this task for several reasons. First, I enjoyed celebrating the achievements of the graduating students. Their energy and enthusiasm was contagious. Being a part of commencement made me feel better about our collective future. Second, being involved in commencement helped me build a stronger network of professional connections because I had the opportunity to further my relationships with former professors, colleagues and acquaintances.

However, the main reason I took part in commencement is because I loved the fact that all of guests, family and friends saw their graduates being led by a chick in a chair. It is estimated that over 5,000 people attended the ceremony each year. They saw me first.

Of course, they saw the faculty. They craned their necks and waved with glee when their graduate entered the arena. They quickly forgot about the woman in the wheelchair who was seated in the front row on the stage.

But for the first few minutes of the ceremony they saw me and my wheelchair. They watched me smiling as I approached the ramp on the side of the stage and then took my place to the left of the podium. They may not remember me now. But for a few moments, I was visible.

Since the United States House of Representatives voted to approve the American Health Care Act (AHCA) of 2017 (H.R. 1628) a few weeks ago, many people with disabilities have used the hashtags #IAmAPreExistingCondition or #IHaveAPreExistingCondition on social media to help gain visibility. Personally, I like the first hashtag because I agree that my disability is part of my identity. I would not be who I am without my disability.

Say what you want about hashtags, but in this age of social media they are a vital tool in gaining visibility. Salon.comAl Jezeera, and CBS News are just a few of the media outlets to feature stories about the #IAmAPreExistingCondition hashtag trending on Twitter. Even if you don’t agree with the rationale behind the hashtag, or if you think we’re all overreacting to political events – you see us!

People often ask me how to learn about disability. The best way to learn is to read and listen to stories from actual disabled people. I agreed to act as a volunteer co-moderator of the Disability Visibility Project (DVP) Facebook page because I believe we need to share and promote disability stories which are told by disabled people. Alice Wong, founder of the DVP, does a fantastic job of curating stories which constantly challenge my way of thinking. If you aren’t following the page, you should give it a look. I’m not just saying that because I am there frequently throughout the day.

It is important to me that I support other disabled voices, especially disabled people of color. Last year, Vilissa Thompson started using the hashtag #DisabilityTooWhiteAs Vilissa explained on her blog, “The hashtag forced me, and others, to discuss the elephant in the room – the racism, invisibility, erasure, lack of representation, and othering of disabled people of color.” As an advocate, I do not further our cause if I am not recognizing other people’s experience with disability and marginalization is different than mine. If I do not help change the representation of disability, I am not being inclusive in my efforts. People have called me out when I have not been inclusive, and I am grateful for their attention.

Some days, it is easy to feel invisible. We think our struggles or successes are not witnessed by others. We do our best, wondering if anyone really notices.

Yet every time I question if what I’m doing makes a difference, someone approaches me and tells me they have read a blog post or seen me at a protest or event. These little acts help increase visibility for not just me, but other disabled people as well. Hopefully these moments of visibility multiply when stories are shared, and help further reduce disability stigma and shame.

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?

The Citrus Peeler

This past weekend I sobbed because of a citrus peeler.

You’re right. It really wasn’t the fault of the peeler. But the sobs snuck up on me when the peeler was in my hand, so it’s a convenient excuse.

Wait, you don’t know what a citrus peeler is?

A citrus peeler is a plastic tool used to help peel citrus fruits. I know, you got that from the name. It has a sharp cutting hook on one end that can be used to slice through the skin of an orange, or in my case yesterday a grapefruit. The other end is a thin, slightly curved, flat piece of plastic which can be used to peel a section of peel away from the fruit. You use the cutting edge to make slices down the sides of the fruit, then peel the sections away with the peeler.

A blue plastic citrus peeler.
My citrus peeler.

Do you need a citrus peeler to peel an orange or grapefruit? Of course not.

However, my father used to swear by his peeler. From the first time he brought one home around the time I was ten years old, he rarely peeled an orange without it. He enjoyed his citrus peeler so much, he bought an extra just in case his trusted peeler broke.

When I was a teenager, Dad would grab his citrus peeler and an orange at night when we sat on the couch to watch Jeopardy! together. We would share the orange while I shouted out answers, trying to beat the contestants. Sometimes, mouth full of fruit, I would frantically wave my hand at the television, moaning when I knew the answer but the contestants got it wrong. Dad would laugh and shake his head.

If you ever make it on the show Neecie, don’t bring any food.

Yesterday, I sat watching a movie, a half peeled grapefruit in my lap, sticky citrus peeler in my hand, and it hit me. I eat fruit this way because of my father. Without warning, the memories of shared snacks came at me.

Grief is sneaky like that. You can be perfectly calm, doing something mundane like peeling a grapefruit, and all of a sudden you find yourself unable to breathe because your insides are being twisted by a crushing vice. I feel as if it waits for you to delude yourself into thinking you’re managing. You’re in your routine, coping as best you can, not mired in overwhelming feelings of loss, and BAM! Like a coiled cobra, grief lashes out and strikes, the venom paralyzing you in a heartbeat.

Which is how I found myself crying over a grapefruit yesterday, holding a sticky citrus peeler. And once the floodgates opened, they didn’t close.

After Dad’s death in December, I knew eventually I would have a melt down. I thought it might happen on his birthday in January. When it didn’t, I thought maybe I’d break down when I next visited his grave. I never expected it to happen on a Sunday afternoon in March while I peeled a grapefruit.

I’m sure it will happen again. I wish I could say that it won’t. But grief doesn’t work in neat, predictable patterns. Next time it may be something other than the citrus peeler. I hope it is, because I’ve cried enough tears over that!