The words 'Disability Rights are Civil Rights" appear in red, white and blue lettering on a black background.

What the ADA Means to Me

When I was a participant in the 2002 Ms. Wheelchair America Pageant, I was selected as one of the five finalists. As a finalist, I had to answer two extemporaneous questions on stage during the crowning ceremony for the final judging session – a serious question and a light-hearted question. Like most of my peers, I chose to answer the serious question first.

In one single sentence, explain what the American with Disabilities Act (ADA) means to you.

I don’t remember my exact answer. I do remember thinking, “One sentence?! Do they know me?! How am I supposed to answer this in one sentence?!” I could hear my sister Sandy laughing in the audience, and knew she was probably thinking the same thing.

I said something about the ADA being crucial civil rights legislation which gives protection and access to millions of Americans with disabilities. I kept it to one single sentence as requested, at least I think I did.

Today is the 27th anniversary of the signing of the ADA. As I write a draft of this post while riding the paratransit bus to work, I am thinking of the many ways this civil rights law has changed my life and the lives of those around me.

This bus, every public bus that is accessible – all thanks to the ADA and the ADAPT activists who literally put their bodies on the street to force change.

I am going to work today, along with my good friend Bill who happens to be on the same bus this morning. Bill acquired his disability just a few years ago, but thanks to the ADA has been able to remain employed with reasonable accommodations from his employer.

I got out of bed this morning, went to the bathroom, took a shower, got dressed and styled my hair with the help of the Personal Assistant who came to work for me today. My personal care needs can be met in the community rather than an institution because of the ADA (and because I live in a state like New York which offers a Medicaid Buy-In Program for Working People with Disabilities.)

Think the ADA only helps those with disabilities? There are many examples of how ADA regulations have helped more than the disabled population, but here is one that is prevalent. Have you ever pushed a baby stroller down the street and used the curb cut to gain access to the crosswalk? What legislation do you think required those curb cuts? On behalf of all disabled people who fought for access, you’re welcome.

The ADA is about more than just physical access though. For me, the ADA creates a sense of entitlement because it tells me I am worthy of equality. Because of the ADA, it is illegal to discriminate against me and other disabled people. I have expectations of access now that I did not have twenty five years ago. When I travel in the United States, I expect to find curb cuts, accessible toilets, wider doors in hotel rooms, accessible public transportation, and accessible parking.

Does that mean I always find these things? Of course not. But thanks to the ADA, I have the ability to pursue legal action if I feel I am being discriminated against because of my disability.

Equality – that’s what the ADA is all about to me. It is not a guarantee I will succeed, but it is an important guarantee that at least I will be afforded the same opportunity for success as my nondisabled peers.

Of course that is not the way it really works. For many reasons, disabled people still face significant barriers to education, employment, housing and transportation. And of course, like the rest of the United States, we are waiting to see what our legislators will do to healthcare and Medicaid. For many, today is not a day of celebration, but a day of anxiety and fear.

That may sound extreme for those of you who do not rely on Medicaid for your daily needs. I have had friends tell me, “Oh, don’t worry. They won’t take away your personal care.”

Here’s the thing – we don’t know what will happen. And it is far too easy for someone who is able to get out of bed, pee, poop, shower, eat and live without the assistance of another person to dismiss our concerns.

My needs are not “special.” They are the same basic needs every human has. I have the right to expect that I can meet my needs in my community, just like everyone else. The ADA guarantees me that right, and when you need that level of assistance (if you live long enough, you will!) hopefully you will have that right too.

Freedom. Life. Liberty. The pursuit of my career, hobbies and other things that bring me happiness.

That’s what the ADA means to me.

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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?