American (Unf)Airlines

If you read any mainstream newspapers or blogs regularly, you’ve probably read at least one story about the horrors of air travel for people with disabilities. Not too long ago, I shared my own experiences with TSA in a blog for the MDA Transitions Resource Center. A The latest transportation entity on my shit list? American Airlines.

Saturday afternoon, I left for Reagan National to attend a housing conference. (More on that later.) Usually I fly Southwest, but no flights were available when I needed to arrive. Alas, American was my only option. Maybe next time I’ll just stay at home instead…

A quick explanation of procedures for those not familiar with the disabled boarding process: I’m not allowed to bring my wheelchair onto the passenger area of the aircraft. Airlines require that I be transferred at the end of the jetway. In regard to who carries me to the aisle chair, I have no choice – it’s whoever the airline sends. The type of training – if any – that these staff members receive is beyond me. Nonetheless, I am entirely at their mercy.  Then, different staff members come to the end of the jetway, and whisk my wheelchair away to the underbelly of the plane.  I am strapped into the aisle chair, taken down to the bulkhead, and transferred to the aisle seat. Nerve-racking is an understatement.


On Saturday, we got to the airport early and asked the check-in woman if she could go ahead and tag my wheelchair and transfer us to the bulkhead. Unlike Southwest, the check-in woman stated all accommodations need to be granted by the gate agent. So we proceeded to go through TSA. Fortunately, my inspection went rather quickly and the agent didn’t even pat me down – just my wheelchair. My experience with the gate agent was not so fortunate.

The gate agent stated that she wasn’t sure whether we could be moved to the bulkhead. Something about people paying extra for bulkhead seats. Nevertheless, after I explained that it is difficult to get me into the airplane seat given the four people involved in the transfer and cramped space, the gate agent promised to see what she could do.

The gate agent never followed up with me, so I figured everything was good to go. However, I was shocked to learn – only after I was strapped into the aisle chair – that we were stuck in seats 11A and 11C. Those seats were almost the very last in the plane! Apparently the gate agent told my mom that the people in the bulkhead paid a premium for their seats and were unwilling to move. Funny that she didn’t have the courtesy to deliver the news to me.

As the transferers pulled me backwards down the aisle, my butt and stomach began to  scrape against the seats on either side. The sling that I sit on to transfer was also getting caught on the seat armrests and ripped. When staff realized what was happening, the man behind me would immediately stop pulling the chair, causing the woman holding my arms to step on my toes. It was painful, but they acted oblivious. Three aisles back, someone from Baggage stepped onto the plane and said it was ridiculous that I was not sitting in the bulkhead. No shit, Sherlock. My mom explained that the gate agent denied my request for accommodation, and though the baggage person kept talking about the ridiculousness of the situation, no intervention was made on my behalf.

Even after I got on the plane, I still wasn’t good to go. Baggage couldn’t get my wheelchair onto the plane. Staff told me they would tip it sideways and see if that worked. I told the baggage handler not to tip my wheelchair on the side with the joystick. Then they gate agent boarded to inform me that if my wheelchair didn’t fit on the plane, I would have to deboard and wait for a different flight. Approximately one hour after the scheduled time of departure, we finally took off for DC.

My reception upon arrival was similarly demeaning. A single man came to help me off the plane after everyone else left. Without even talking to me, he bent down like he was going to try to move me. I said, “No,” and my mom explained how to transfer me with the sling. We also explained that more people were needed to safely do the transfer. He ignored us, and grabbed the sling in a place that would be completely useless. Again, my mom tried to explain that we needed more help. He ignored us, but a woman finally joined him. They transferred me to the aisle chair. I started to slide, and stated that I needed to move backward. My mom lifted the sling to offer it to the man, but he said he was going to pick me up under the arms. I said I could not do this, and he told me I could. My mom put her arm over me to stop him, and the woman eventually got him to listen.

You might think that was enough for one day, but no. Because we did not land at a jetway, we had to take a shuttle back to the terminal. A fellow passenger was on the shuttle, and he started rudely talking about how waiting for my wheelchair to be loaded was an inconvenience. He suggested that I reschedule my flight home to avoid such delays in the future. To add further insult to the toe, stomach, and butt injuries, the guy who would’t listen to me on the plane tried to command my mom to drive my chair off the shuttle. Despite having witnessed me drive onto the shuttle, the man didn’t believe that I could safely exit it.

Once I got situated fully in my wheelchair, I realized it had been broken. More specifically, my left armrest was bent downward and no longer supported me. I was worried that I would fall over riding to the hotel on the Metro. So we stopped at the baggage claim area and explained the problem. The baggage claim woman stated that we would have to file a formal complaint. My mom stated that she could fix the armrests if given an Allen wrench. Three times the woman denied this request and said the only way to get my wheelchair fixed was filing a complaint. Fortunately, someone overheard, had mercy on us, and found someone with an Allen wrench. However, our helper informed us that if the airline knew what was happening, it would have the helper’s head. Abso-fucking-lutely ridiculous.

But it gets worse, friends. I had to return home on Tuesday.

Although my mom and I had no intention of booking a different flight, we did get to the airport super early in order to arrange for necessary accommodations. We approached the gate agent, she glanced at our tickets after ignoring us for several minutes, and mumbled something indecipherable. “What?” my mom asked. “Over there! Indianapolis!” the woman barked, nodding toward Gate 39.

We walked to Gate 39, but that was for a flight leaving Indianapolis at 3:30 PM. We were set to leave at 4:45 PM. My mom asked the new gate agent if our flight had been moved, and she acted as if we were crazy. Our boarding passes clearly said Gate 41. Was there anything this gate agent could do for us, my mom asked. She was shut down.

So we made our way to the Customer Service desk. Its staff indicated that no gate agent can help a passenger unless it was 30 minutes or less until the flight was scheduled to board. We explained that we needed to get things in order before the flight, especially since disabled people board first, but were told nothing could be done. As we waited another hour, our gate was changed again.

The new gate agent was a friendly man, but he was immersed in the details of the current flight and could not help us. He asked us to wait to the side of the desk, and my mom told him that was fine, provided we would be first in line for assisting passengers on the Indianapolis flight. He agreed. Then the airline called him to a different gate, leaving ours unstaffed. I waited in front of the desk for another 15 minutes or so before another man came to the gate. He just ignored me. It was not until my mom returned from going to the bathroom that he began speaking with her.

He stated that bulkhead seats are premium, so he could not move us. My mom asked if there was anyway we could be moved to the second row, so that I wouldn’t have to be pulled all the way back through the plane again. The gate agent literally walked away without responding.

Oddly, a different guy walked through and stated that someone from baggage would be coming to learn how to take care of my chair. My mom and I asked about getting our seats changed and getting help for transferring, and the man said we would have to work with the gate agent. When a gate agent came back, we tried again. He ignored me again. He wouldn’t even look at me, so I began to state in a raised voice that I needed to speak with someone about reasonable accommodations!

The man who was concerned with Baggage returned, and my mom attempted to intercept him before he left for a different gate. He talked to the gate agent, and said that the airline could do nothing to move us to different seats. Keep in mind that not only were my mom and I not sitting in the bulkhead – we were not even sitting in the same row! I cannot hold my head up on an airplane seat, let alone keep my body in the chair during landing. We explained all of this, but were told that nothing could be done. The man who is not the gate agent shouted to everyone waiting at gate that my mom and I would like to sit together, and the airline would accept volunteers to let us do so. He never explained why the request was made (aside from pointing us out in front of everyone), but he was sure to let everyone know moving was completely optional. It was humiliating, and I was terrified about what would happen to me.

A few minutes later, the man came back and said that I needed to board the plane. No one had come from Baggage. No one had told me that my seat had been moved. Somehow, miraculously, and without any volunteers, the gate agent managed to transfer us to the bulkhead, together. Why he couldn’t do this earlier is beyond me.

We waited for everyone to board. Then we waited to taxi to the runway. Then we waited longer. Then we waited more. Then we were told that we were going to be waiting a lot longer, as our flight was in the path of a storm.

Initially, we were given updates every half hour or so. Then the updates stopped until we were informed we needed to refuel. Cleverly, it was then that the airline decided to give us pretzels and the glass of water. This was about at the two-hours-of-waiting mark. We should have landed by then. In fact, I was counting on having landed by then.

My two major reasons for not enjoying flying – aside from having to deal with airline staff – are pain and not being able to go to the bathroom. I took appropriate pain medication for a two hour flight, and my back was starting to feel the agony. I also had not gone to the restroom since approximately 7 AM that morning. I thought I would be able to pee by 9 PM at the latest. Wrong, and my bladder was starting to get angry about it. Nevertheless, airplane bathrooms are so tiny, I cannot use them. I believe most domestic flights carry an aisle chairs, but the stewardess never offered me one. She never even asked if I needed any help, despite watching me wince and writhe. I begged my mom to signal the stewardess and ask if there was any way I could get off the plane, but my mom said we would have been informed if we were allowed to leave. In fact, we had repeatedly been told to keep our seatbelts on.

All told, I was on the plane for over six hours. Agony. If I can help it, I will never use American Airlines again.

Lame Symbology

I feel like Peter Griffin when I say that the Accessible Icon Project really grinds my gears. Of course, I actually do have gears, riding around in a wheelchair and all…

So what is this Project of which I whine? If you are not a hermit – and maybe even you are – you should recognize the International Symbol of Accessibility (ISA). MUTCD_D9-6.svg.pngMost commonly, this symbol isused to mark handicapped parking spaces, but it also indicates the presence of other accessible design features for people with disabilities. It features a stick figure sitting on a wheel. Pretty standard… It does the job, and has been doing it for nearly 50 years!

If it ain’t broke, I say, don’t fix it. After all, people with disabilities have enough things to worry about. Is a symbol really worth launching an entire movement?

Apparently Sara Hendren and Brian Glenney think so. In 2009, the two began graffiti-ing ISA symbols in New York City. The new design purports to show people withaccessible-icon.jpg disabilities as more than mere stick figures, but rather active, engaged participants in community life. The Accessible Icon Project was born, and some disability activists began stickering or lobbying campaigns of their own to get the new symbol more widely adopted.

At this point, I imagine you might be wondering why someone who purports to be a disability activist herself would be irritated by the new depiction of accessibility. Because the new symbol prioritizes physical activism. The new symbol is still a disabled stick figure in a wheelchair. The difference is that the stick figure is now pushing itself in a manual wheelchair.

Certainly, the visual alteration is minor. But the message is not. To argue that the new symbol is “better” than the ISA is to determine that having the ability to physically steer oneself is better than alternate means of direction. People with disabilities should be concerned about philosophical and actual self-direction – which still have not been achieved by far too many – not physical propulsion. Essentially, the new symbol is ableist.

I had not thought about the new symbol until I spent the weekend in New York. I was visiting Siena CollegeIMG_0255.jpg and happened to park in a space marked with it. I had forgotten that New York became the first state to require that the ISA be replaced with the new symbol. As a person with a disability, legislation like that frustrates me even more. Instead of mandating that people with disabilities should have equal access to home and community-based services, legislators are wasting time paying lip service to politically correct iconography. (And people wonder why Trump is doing so well in the polls!)

Moreover, I don’t think it’s fair to ask businesses to replace the existing universal symbol of accessibility in favor of the latest fad. It costs money. While I do believe that businesses have an obligation – morally, in addition to legally – to make reasonable accommodations for customers, I think it is short-sighted to ask them to pay for alterations that make no substantive difference to disabled people. If business owners are passed off, I don’t blame. But I do worry that they won’t be as receptive in the future to civil rights legislation that actually does make a difference.


Review: If at Birth You Don’t Succeed

Remember Zach Anner? The disabled demi-god of YouTube is now out in print – his autobiography, If at Birth You Don’t Succeed: My Adventures with Disaster and Disability, is absolutely hilarious and well worth a read! I was prompted to make the purchase after Zach graciously agreed to Skype with a nonprofit I’m involved with, NMD United.


Anyway, the book tells the story of Zach’s life, largely focusing on career and relationships, through the latter half of his 30 years. What makes Zach’s story unique – in addition to his winning a show from Oprah – is his sense of humor. And, because he has CP (cerebral palsy, or the sexiest of the palsies, for then initiated), his cripple jokes are particularly funny to me.

My only criticism of this book is that I wish Zach would have spent more time discussing childhood and what he went through while in his high school years. I understand that these were more difficult, and probably less interesting than his years in Austin and LA, but it would’ve been nice to get a more complete picture of the awesome guy presented in the book. (Maybe I’m partial – he was just as congenial and kind in person as he sounds in print.)

If my review hasn’t yet convinced you to put this book on your shelf, it comes with funny pictures. When’s the last time you had the chance to read an illstrated book?!

Review: Telethons

As soon as I heard the late history professor and disability rights advocate Paul K. Longmore was writing a book about telethons, I got excited. As someone with spinal muscular activity, the annual Jerry Lewis MDA Telethon on Labor Day was a big deal. When I was younger, I was excited to be on my local TV broadcast, telling stories about MDA camp and friends with neuromuscular disorders. In my mid-teen years, I began to hate what the Telethon stood for – pity, exploitation, and fearmongering. Longmore’s book, Telethons: Spectacle, Disability, and the Business of Charity summed up all my feelings and introduced me to some new revelations.

Longmore’s impeccable research focuses on four major American telethons: the United Cerebral Palsy Association (UCP), the Arthritis Foundation, the National Easter Seals Society, and the Muscular Dystrophy Association (MDA). The UCP was the first charity to begin a multi-hour fundraising program for disabled beneficiaries in 1950. However,  the MDA created the “modern” telethon, reaching 100 million viewers at its pinnacle.

Of course, telethons are now generally viewed as relics. Their decline began in the 1980s, when more of the television audience demanded regular overnight programming. Moreover, the Federal Communications Commission under the Reagan administration deregulated the requirement that local television stations provide community service programming. As such, stations began requiring that the charities sponsoring telethons pay akin to what stations were losing in preemptions and other revenue. Longmore states that the price was sometimes more than $250,000 per hour! (No wonder the MDA recently decided to terminate its telethon programming.)

Interestingly, the decision to nix the telethon drew great criticism from not only some beneficiaries, but also many donors. Longmore writes that telethons “democratized giving.”

No longer relying mainly on a social elite’s sense of noblesse oblige, it mobilized mass publics and sought to instill in them the habit of giving. In reaching the public through the mass media, charity fundraising reflected and reinforced the interpersonal disconnectedness of modern life as it widened the social distance between givers and receivers.

Indeed, Longmore documents the specific role that each participant played – sometimes gleefully, sometimes unwittingly.

Until reading Telethons, I was unaware of the benefits corporate sponsors received by issuing donations to telethons. Obviously, their appearance helped generate goodwill for the companies and their management officials. But asking viewers to purchase a product in order for a portion of the purchase price to go to a particular charity boosted corporate revenue immensely. For example, by offering a charitable donation, American Express increased credit card donations by one-third and yielded $17 million! Known as “cause-related marketing,” corporate public relations officials bolstered profit. Need more proof? “Former executives at two of the charities confidentially disclosed that their telethons lasted as long as they did only at the corporate sponsors’ insistence.”

Donors benefited from their ability to engage in “conspicuous contribution.” They could pick up the telephone, throw a few dollars at a problem, and have the whole world know they did a good thing. Whether having their name posted on the Star Board or sharing photos of themselves locked up in a faux fundraising prison, donors enjoyed the gratification of public praise. Longmore also suggests that some donors of a conservative bent may have preferred charity models of healthcare to government-sponsored healthcare, meaning that, by donating, they could keep socialist reforms at bay.

And, certainly, poster children played their part as well. Easter Seals trained local offices that “children raised more money than adults. Donors “sympathized with images of ‘the most weak.'”  (It should be noted that, at least as far as Lewis was concerned, poster children couldn’t be too weak – “he says he doesn’t want to bend over a wheelchair to raise a buck.”)  Couched in the “narrative techniques, character, and plot devices used in sentimental literature and Victorian fiction, [telethons used poster children in] combining three standard sentimental devices: unmerited affliction through illness or accident, the suffering of children, and emotional excess.”

In addition to this basic overview, the book offers far more insight.  Readers will learn about how Lewis enforced patriarchal culture by branding his “Kids,”  how Jerry’s Orphans fought back in an effort to regain stolen dignity, and how the medical model persisted throughout charitable engagement. With my weak SMA-“afflicted” thumbs, I give this book two thumbs up!

Wheels on Wheels

When you ask people with disabilities about their number one barrier, transportation is a frequent reply. (More than 500,000 people report never leaving their homes due to lack of transportation. For more on this, and other alarming statistics, look here.) In addition to being an American symbol of freedom, personal vehicles are often necessary to maintain employment, social contact, and good health. Public transportation is not available in rural areas, and even city paratransit services often leave those with disabilities waiting for hours. Although urban millennials have been pushing for more universal public transit, legislatures like my own Indiana General Assembly are stuck in old transportation paradigms.

I am fortunate enough to use an accessible vehicle purchased by my parents, a 1999 Chevy Savana, modified by a previous owner. (See here for a lively visual and rap song.) However, we learned in April 2015 that the van would no longer be insured as of April 2016. Apparently it was too old. Thus began the process of trying to get a new adaptive vehicle.

Vocational Rehabilitation (VR) programs exist in every state, a jointly funded state and federal program to help people with disabilities achieve and maintain employment. Where a vehicle is necessary for job success (e.g., one needs a vehicle to drive to work), VR will pay for the cost of vehicle modifications. Unfortunately, VR only purchases the modifications – that is, the lift or ramp, the wheelchair tiedowns, etc. – and the client is responsible for providing the vehicle. Individual VR programs set rules regarding the type of vehicle that they will modify, frequently requiring new or gently-used ones in order to ensure that the modifications will be used for years to come. Effectively, this means that people, who sometimes are not even employed yet, are on the hook to purchase a $30,000 van. Yet, because modifications run upwards of $20,000, going through VR is worth it.

I contacted my local VR office in May 2015 and expressed my desire having my case reopened. The local supervisor stated that a new case would have to be opened, given the expensive nature of my request. Okay… I was then informed that I could get in for an appointment in September, a clear violation of VR regulations. Good thing I’m a lawyer, huh? After some self-advocacy on my part, we finally got the paperwork started.


Today, I finally got my van I named her Clover, in honor of St. Patrick’s Day, and because I know how lucky I am to have her. I’m grateful for the financial resources to purchase the Dodge Grand Caravan, and for the taxpayer-funded $22,000 in modifications.

I still wonder what happens to people who are looking for jobs and can’t yet afford the price of a modification-ready vehicle. To my knowledge, no private funding sources currently exist. Some public funding is available to veterans, but not the average cripple. Do you have any creative solutions for the funding of accessible vehicle?