I was perplexed when the flight attendant ordered my now wife, Laura, and I to change seats so that I would be next to the window and Laura at the aisle. I couldn’t see, so the window had no benefit for me, while from the window seat Laura could not only look outside, but also report what she saw. It was 2006, and we were taking the short BWIA flight between Trinidad and Tobago, two islands that form the eponymous nation near the Venezuelan coast.
“Why do you want me to move to a window seat?”
“”I’m sorry,” the flight attendant said, “it’s regulations.”
She had no explanation. I went quiet, caught in a quandary. Laura increasingly shared my annoyance at nonsensical rules involving disability, but she, too, disliked public scenes. If I didn’t comply with the flight attendant’s demand, she’d be forced into participating in my protest and whatever consequences followed. We had a brief exchange that told me she was ambivalent. I stood up, and we switched seats.
The flight attendant then told me to buckle my seatbelt. This was something that required no one else to do anything; Laura could stay put. So I had an outlet for protest. I refused.
The flight attendant grew upset. Pointedly ignoring her, I turned to face the window and hummed tunelessly. Fortunately for me, and everyone around me, she gave up and left. The plane began taxiing. Did I then buckle my seatbelt? I hope I had that much sense.
At long last, eleven years later, I’ve come across an explanation. In 1985 a blind passenger who was also ordered to switch seats and sit by the window was told that under Federal Aviation Administration regulations, “in case of an emergency, we were to be the last passengers to deplane.”
I think of the false claims of “death panels” that opponents of the Affordable Care Act manufactured to rile the public. It seems there was a real death panel in the FAA and the airlines.
Well, no doubt the reasoning behind the rule was that blind passengers’ clumsiness would also put other lives at risk. But if so, it was a cruel assumption with no foundation in experience. Blind people are accustomed to navigating in novel situations and staying calm in the face of difficulty. Such ingrained habits could prove helpful in an aircraft emergency.
That wasn’t my first battle with an airline. Leaving Paris in August, 1979, I arrived on my own at the airport, where I asked for and received help through the various lines. All went well with my ticket, passport, luggage and security check. Then I was shown to TWA’s office to await assistance in boarding. Although the airline was American, everyone around me spoke English with French accents. They were friendly and fun.
Then someone brought in a wheelchair and told me to sit on it.
“Thanks, but I don’t need a wheelchair.”
“It will make everyone’s life easier.”
“We must insist.”
I shook my head.
“You’ll miss your flight.”
I shook my head again. If I missed my flight, so be it.
Perhaps someone called for help. In any event, another woman arrived and cheerfully offered her arm. Chatting all the way, we walked together to the plane, and she volunteered she understood my feelings and was happy for the break.
There was no advantage for the airline staff in wheeling me to the plane. In those days, I walked fast. Honoring my feelings cost the airline staff nothing. If anything, going to find the wheelchair had added to their workload.
I did worry that by refusing to sit in a wheelchair, I was being disrespectful to another group of disabled people. But each disability has its own set of accommodation requirements. I didn’t need a wheelchair to get around, just as a sighted paralyzed man didn’t need to have people read to him. But while that man needed a wheelchair, I needed my cane and, sometimes, a person’s arm. Each accommodation is a concession born of necessity. Anything more than that can be an encumbrance, something new and disorienting, and definitely not a help.
Even so, how could I let a few minutes in a wheelchair put me at risk of missing my flight? In that moment, I discovered dignity mattered.
The word “dignity” was, and often still is, associated with high social position, as in noble bearing and “the dignity of office.” But it originates from the seemingly more democratic Latin word “dignus,” meaning “worthy” or “deserving.” Worthy or deserving of what? The obvious answer is respect.
Although we rarely think about dignity with regard to ourselves, we do care. Checking our hair and clothes as we leave home, we prepare to tell the world we deserve respect. If we greet a passer-by, we look for a nod or word of reciprocation. When we pay a street vendor for our coffee or tip a waiter, we are irritated if we don’t get some form of “Thank you.” Such shows of respect provide the affirmation dignity requires.
In recent years, “dignity” has emerged as the word that captures the outward comportment that disabled people seek to attain. It used to be easy to ignore disabled people, the way people today can pass by homeless men and women without seeming to notice, and for similar reasons: superstitious fear of contagion combined with feelings of helplessness at being unable to improve a fellow human being’s condition.
Does this mean disabled people have attained the dignity that all people seek? Even today, disabled people can be ignored, but it’s harder, both because we demand to be noticed and because society has come to expect its members to treat us as equals rather than misfits. Beyond social attitudes, disabled people must work hard every day to overcome awkward moments. As a blind person, I sometimes look in the wrong direction or mistake people’s identities when they speak out of the blue to me. The daily pressure to act and appear normal surely explains why the word “dignity” has earned its heightened significance for disabled people.
Turning Disabled Adults into Children
A recent incident shows that even the blind can infringe on the dignity of people who share their disability. A certain online list enables visually impaired users of a synthesized speech application to post problems and solutions. List members include social workers, lawyers, musicians, religious leaders, salesmen, technology experts and many other accomplished adults, along with high school students and people who have only lately lost their vision. Considering the importance of speech programs in the professional and private lives of visually impaired people, this is an essential service. Members usually post suggested solutions promptly, an invaluable aspect of the service because it minimizes disruption at work and at home. The men who own and moderate the list are to be commended for setting it up and for running it well.
However, last month a message thread emerged on the list in which a member criticized the speech program’s seller for charging high prices to a population, the visually impaired, with a disproportionate number of low-income earners. It’s a legitimate ethical quandary, with practical commercial merit on one side and social justice on the other. Only five non-owner members were involved, and most of their messages were either informational or innocuous. However, the seventh post chastised complainers for criticizing the company even while “licking their chops to buy the new iPhone 8 for $799.” The eighth post attacked this lister as “offensive” and explained that “the iPhone is accessible and helps many blind people function better.”
With the thread’s tone having escalated, I anticipated that the list’s moderators would become concerned that things might get out of hand. A common remedy employed by online lists against list rule infractions is to remove offenders and thus prevent them from posting. Even this solution might have struck me as extreme in this case, but that’s a different issue. Here, one of the list owners terminated the thread with the ninth post: “I said the list would be turned off until next week if you folks wouldn’t stop that thread, well it is so like it or not deal with it.” That’s exactly what he did—closed down the list for the weekend. Incidentally, the thread contained no such advance warning.
The incident reminded me of an event during my last year, 1967, at a school in England. To picture the setting, it might help to know that each day began with morning assembly, where hymns were sung, prayers prayed and announcements announced. Although there was no such division in classrooms, boys sat on one side of the center aisle and girls on the other. One morning, the headmaster told us that someone had done something bad. I don’t recall what it was; perhaps a book had been stolen. He demanded that the culprit own up. Failing that, every boy would be punished. I had a doctor’s appointment the next morning, so I missed that day’s assembly. I was fortunate. Because no one had confessed, the boys were ordered to line up, and each was given a stroke of the cane.
I thought mass punishment for an infraction by one, or even a few, people had gone the way of Victorian workhouses. Instead, here in 2017, talented and hard-working blind guys were treating all the blind members of their list as if they were children.
Disabled people question themselves and each other about appropriate responses to treatment they deem disrespectful.
Three weeks ago, I got into an unexpectedly sharp email exchange with a visually impaired friend over her handling of a Paratransit episode. Dawn (not her real name) lost her vision six or seven years ago, and her husband is also visually impaired. They rely on Uber because of their state’s poor public transportation options, but because Uber gets expensive, they use Paratransit for long journeys. Here’s how she describes what happened:
The Paratransit van brought us home one evening, but we didn’t enter the house. We wanted to book Uber for a later outing. The Paratransit driver became very upset, saying his job was to watch over us until we entered our place. We told him that wasn’t necessary. We could easily have stepped inside and stepped right back out, but I refused to do so because I felt it was an insult to blind people and their independence. We booked the Uber ride and eventually the Paratransit van left, but not until the Uber driver arrived.
My initial reply betrayed some resistance:
Here in New York City, I’ve been aware of cab drivers waiting until I enter my building before driving off. I’ve found it touching. It shows concern that I arrive safely at my destination. The difference in your case is that you told the driver to leave and he refused. He should have respected your wishes. But then he would undoubtedly have risked censure, if not worse, had something happened to you between the van and your stepping inside the doorway. If anyone’s to blame, it’s the people who run the service for putting drivers in that position.
Then again, they’re probably acting on legal advice. I assume the driver of a public bus ceases to have responsibility for a passenger once s/he steps onto the sidewalk, but Paratransit drivers probably have a broader responsibility because of the variety of their customers’ disabilities. We’d want a Paratransit driver to wait while an elderly person with a walker staggers to the door. But yes, blindness doesn’t imply diminished mobility skills and coordination.
Having read my tale about the speech program list being shut down to punish all members, Dawn replied:
Your comment about treating disabled people as children goes exactly to my objection to that Paratransit driver. While I understand your point that he shouldn’t ignore a disabled person clearly having mobility issues despite protestations, that was not our situation. We were told where we had to go, inside our house. This is akin to being a prisoner. The driver may have had concern for his job but his remedy would have been to call his dispatcher. We did not object to his waiting until we were picked up by Uber. We have the right to say whether or not we will enter a place, no matter what the Paratransit regulations might or might not say. To treat us otherwise is to treat us as children or worse.
Dawn’s general demeanor is gracious and considerate. In this instance, she took a stand, and it offended her that she had to. At any rate, I assume it did. Putting your foot down can entail a loss of dignity and a violation of one’s personal code of conduct. I’ve been there, as my airline stories show. It’s horrible. One consequence of being treated like a child is that you can find yourself reacting in ways that are perceived as uncooperative and hostile, possibly even childish.
When I showed Dawn an early draft of this section of my essay, that last sentence (as then written) provoked her:
You can use our Paratransit story as you like and draw whatever conclusions come to you as we are not identified. However, neither of us thought my reaction or challenge to the driver was in any way childish. I was simply maintaining my right to enter or not the house as I chose. I did not scream at the driver nor try to interfere with his conduct in any manner. I simply exercised my right not to enter a dwelling.
Dawn apparently thought I was characterizing her reaction as childish when I was only trying to list a range of possible reactions and others’ interpretations of those reactions. Indeed, in an early draft I cited my Trinidad and Tobago reaction as one that undoubtedly struck onlookers as childish.
The job of the driver was to get us to a destination, not to try to control our conduct once we arrived. Perhaps we could have gone inside to placate him, but to do that would have required us to sacrifice independence for the pleasure of someone else. Perhaps then we should take all money thrown at us or let people lead us across streets even when we are quite comfortable crossing on our own. I will continue to refuse to allow my blindness to be used as a feel-good instrument for others at the price of my independence and indeed dignity.
Dawn’s “money thrown at us” was a reference to the embarrassment many blind people have experienced of money being tossed at them by well-meaning sighted strangers. It happened to her in a restaurant and to me in a London Underground station. See my story, “Charity” for a depiction of such a scenario from the would-be donor’s point of view.)
As Dawn recognizes, some visually impaired people faced with such a predicament might have laughed, gone inside, waited for the van to leave, and then come right back out. For others, including Dawn and her husband, it was unacceptable to be put in such a position. I’m not sure which choice I would have made. I imagine it would have been influenced by my mood, whether I’d endured other related annoyances that day, and a host of other factors.
Work in Progress
People who don’t depend on services such as Paratransit may react coldly to Dawn’s story. At first, I didn’t fully grasp it myself. Having chosen to live in a city with subway and other transportation options, I’ve been spared Paratransit’s rigors. But readers who have been hospitalized might see a parallel in the moments when patient dignity is sacrificed in the name of institutional efficiency. Yet for most hospital patients, the stay is temporary. For disabled people, such little indignities can be a daily frustration that compounds over time. Dawn has described numerous other instances of Paratransit treating riders like children. Accumulation breeds simmering anger.
So, too, does trivialization by anyone who hasn’t repeatedly been put in such a predicament. When we—all of us—are discomfited by another’s emotional reaction to a problem we ourselves haven’t experienced and aren’t likely to, our resistance can be powerful. A hard part of living with a disability is conveying the very real distress such treatment can cause.
After the speech program list shutdown, I contacted the owners. One said his fellow owners had debated among themselves: “[A colleague] didn’t completely agree with my choice to shut off the list and when I reviewed his message to me I had to admit his idea of simply removing the offending people might have been a better choice. … Mark it down to me taking a shortcut and nothing more.”
I replied: “I do believe shutting down the list for a weekend was a mistake, but I’ve never for one moment thought you acted out of malice.”
He followed up: “I believe I did express remorse for the folks that might have needed help during the cooling off time as they were caught in the crossfire, collateral damage if you will. Also [my colleague] was correct in stating the offenders were a very small number, and for that I also take full responsibility.”
It’s proof of the list owners’ integrity that they promptly responded, disclosed their internal discussion and reconsidered their decision. By contrast, airlines tend to respond to complaints by blind consumers with vague promises and vouchers for future flights. (See also Mark Mauer’s 2006 article in the note below.) Of course, airlines are just one example.
I’ll close with words I wrote to the speech program list’s owners: “How disabled and non-disabled people handle disability is still a work in progress. Count me as one of those still figuring things out and getting things wrong. When I write about disability, my objective is to avoid simple solutions, bromides and rah-rah talk. There aren’t simple solutions.”
Note on the Law
Airline and airport accessibility is subject to the jurisdiction of the Federal Aviation Administration (FAA), which has authority over safety matters, and the United States Department of Transportation (DOT) which handles all others.
The Air Carrier Access Act, passed in 1986, led to the DOT issuing rules with which airlines must comply. §382.91 of Title 14 of the Code of Federal Regulations states that carriers must provide assistance that is “requested” or “accepted” by a disabled passenger. Thus, the passenger, not the airline, determines the nature of the assistance.
However, in a 1985 speech, Mark Mauer, former President of the National Federation of the Blind, explained how the FAA and individual airlines shift responsibility between each other for safety regulations. The FAA authorizes each airline to draw up a set of safety rules that it then shows to the FAA for acceptance. Thus when an airline says something is an FAA requirement, it’s actually an airline standard given the FAA stamp of approval. This blurring of responsibility makes it hard for disabled passengers to overcome arbitrary and discriminatory demands, such as some airlines’ requirement that blind passengers be given only window seats.
In 2006, Mauer indicated that most objectionable airline safety requirements have been abandoned, but not all, and even then, airline staff sometimes ignore the new standards.
In 2013, a visually impaired friend of mine was made to sit in a wheelchair as he was assisted through Newark Airport. After an arduous journey to his departure airport followed by a trans-Atlantic flight, he was too tired to do anything but take the path of least resistance. Airline travel today is already stressful enough. There are only so many demands a person can refuse.