Compassion

1. Introduction

You cannot legislate compassion. It’s an aphorism wryly acknowledged in political and legal circles. You can pass laws telling people what to do, but you cannot tell them how to feel. In broad terms, it’s a good thing: We don’t want government telling us what to feel, never mind think. However, compassion has many sides, not all of them benign. When it comes to disabled people, compassion without an understanding of their feelings and needs can be detrimental.

Responses to disabled people range from pity at one extreme, to much-mocked sympathy (“I don’t need your sympathy!”), then to compassion, and then at the other extreme, to empathy. Empathy moves sympathy and compassion a further step in that the person isn’t just sensitive to, but believes they feel, the suffering, and so might take on its burden.

Compassion is the most appealing of these four responses. However, compassion alone is insufficient, even harmful. It can be imposed by law and employers, with mixed results. It has generated whole new bureaucracies. Most unfortunate, excessive adherence to compassion-motivated privacy rules relegates disabled people to a remote place where they will never really be understood.

2. Pity

Every definition I find of compassion has the word “pity,” and most include “the sufferings of others.” It makes sense in light of its etymology: “com” meaning with or together in Latin, and “passion” from the Latin for “suffering.”

Admittedly, pity can be a humane reaction, such as right after a devastating injury or loss. When someone loses their vision, it is hard to accept that the world and the people around you are no longer visible. But time can bring confidence at managing this new environment. It doesn’t mean all problems go away. It means new ways of doing things, new forms of fulfillment, a fresh life’s meaning. When a disabled person is managing well, we do them a disservice by seeing them as tragic—as pitiable.

When pity is the prime motive behind compassion, it can reinforce the pity in those who already feel it for themselves. On the other hand, it can cause independently-minded people to recoil. We all—not just the disabled—dread to think of ourselves as objects of charity. I witnessed it while representing people on welfare back in the late 1970s. They needed the financial support, but felt as if they were holding out a beggar’s cup when they went before government officials and filled out forms. No wonder disabled people in need of assistance can seem unreasonably irritable.

Not every act of assistance involves the pity in compassion. In everyday situations where disability isn’t involved, such as when a neighbor’s car breaks down and they can’t get to the store or when a friend trips and bruises a rib, we want to help. But we’re feeling less pity than something like identification, closer to empathy: It could happen to me.

Something similar occurs when a friend or colleague warns a blind person of a possible trip hazard, such as a box that was dropped on the floor where the person is about to step. This scenario is like helping out the neighbor with the broken-down car or bruised ribs, whether or not disabled. Compassion’s pity is absent.

3. Understanding

In the context of compassion, “understanding” is easier to illustrate than define. I can understand why an employee who has just lost a loved one needs time off to come to terms with grief because either I’ve already had my own experience of bereavement or I know that one day I will. However, it doesn’t mean that I feel the same degree of suffering, which is to say empathy, because in that moment I’m not the one grieving.

Here’s a scenario. You’re walking home and see the elderly man in front of you fall and be unable to get back on his feet. Your choices are (1) do nothing, (2) grab him by the arm and lift, or (3) ask if he wants assistance. The first response is cold. The second is caring but impulsive and possibly self-gratifying. In the third, you show you understand he might feel ambivalent, which allows the man to decide with dignity whether and how to act on your offer.

4. Obligatory Compassion

Much of the assistance disabled people receive is provided as an obligation imposed by law. When an airport official guides a blind person past long TSA lines, they’re getting favored treatment over other travelers. Why this special treatment? One reason is that they’re unlikely to manage such situations without aid. Another is that because such assistance takes time, it is more efficient for the employee to skip routine. Humane response merges with obligation merges with practicality. So far, so good.

But the person employed to provide assistance can make the experience demeaning. The airport assistant might demand that the blind person sit in a wheelchair rather than be guided, even though walking is not the disability. Visually impaired friends have told me that if they protest but eventually feel compelled to give in, the resulting ride can be a nightmare of insane speed, abrupt turns and perilous descents down escalators.

That’s just one example. Disgruntled hospital nurses, human resources employees, nursing home attendants and others in a host of well-intentioned institutions can turn compassion on its head.

In my experience, the vast majority of these people, from airport aids to nurses, are generous and considerate. I am pointing out a dark side of compassion, not making a general statement about people employed in support roles.

5. Compassion and Bureaucracy

An insidious harm of compassion has become bureaucracy. I pause again to express gratitude for the support I received as a newly blind person during my education from government employees—whether teachers for the visually impaired or the staff members who processed my financial assistance requests. Nevertheless, I worry about bureaucratization since passage of the Americans with Disabilities Act (ADA). To explain my concerns here and in the following section on privacy, I draw on my inquiries during the past five years into my alma mater’s record on disabilities.

At colleges before the ADA, disabled students informally negotiated accommodations with administration. Now, disabled students must make formal applications for each accommodation to employees who may or may not truly understand their needs. That’s because accessibility services offices manage a vast array of disabilities, ranging from paraplegia to broken arms, OCD to dietary conditions. It’s a tall order for accessibility staff members to be conversant in all the specific accommodations that each disability requires. In addition, as reported by The Atlantic, New York Times and other publications, up to 38% of college students claim a disability. Such a wide variety of needs and huge numbers of self-identifying disabled students create huge workloads for accommodation services’ staff that surely contribute to the deficiencies and delays brought to my attention in recent years.

6. Compassion and Privacy

Excessive concern for disabled students’ privacy is another casualty of compassion. It contributes to disabled people in general being little known and, hence, little understood.

Colleges typically release a slew of data about their students. However, Section 504 of the Rehabilitation Act and the ADA prohibit disclosures about student disabilities to potential employers, professors and others. The rationales include ensuring employers do not reject an applicant because of a disability reference in their transcript and that professors not be swayed when grading a disabled student’s work.

However, academic institutions typically take these safeguards to counterproductive extremes. Most significantly, although they release the number of students using disability services as a percentage of all students at that institution, they decline to break down the number by specific disability. (Recent exceptions are UCLA and UC Berkeley, both in the University of California system.) As a result, outsiders, like me, might suspect a college is admitting too few students with a particular disability, such as deafness or paraplegia, but we cannot get objective data to make a judgment with certainty. Outsiders are also precluded from assessing whether accommodations appropriate to each disability are being provided satisfactorily, such as accessible websites for blind students and step-free entrances for wheelchair users.

It’s possible that at a small institution, a valid argument can be made for concealing the number of students with certain kinds of disabilities. Prejudice against psychological and emotional disabilities may call for caution. In the unlikely event a college has only one student with ADHD, some might try to figure out that student’s identity and expose them. I lack the experience for an informed opinion. However, I urge that any good that privacy does in these cases be weighed against the harm that privacy does.

Those like me who have what are known as “visible” disabilities can hardly hide that we are blind, paraplegic, and so on. If there’s only one blind student on campus, everyone will know who they are by their white cane or guide dog. People with visible disabilities know that adjustment isn’t only to physical limitations, but also to preconceived perceptions. In that case, must we treat college-age men and women as too fragile to handle the dissemination of public data showing the number of students with their specific visible disability? It should be done anonymously, as are the other data a college disseminates, but the risk that affected students could be identified is far outweighed by the value of what numbers can reveal.

Obsession with privacy extends beyond the rules mandated by privacy laws. While universities eagerly promote their ethnic minorities, their athletes, their undergrads from foreign countries and faraway states, and so on, very little, if anything, is publicized about their disabled students.

In 2023, after encountering accessibility obstacles with my alma mater’s website, I tracked down some disabled undergrads and persuaded them to talk to me on the promise of strict confidentiality. They weren’t just reluctant to talk about themselves and their experiences, but fearful. An official, all-concealing blanket of privacy had turned disability into a shameful secret. They told me there was exactly one wheelchair user on campus that year and one student who used a cane for support when walking. They confirmed there had been no blind undergrads since 2019. Were the college to release numbers like these, they would, or should, be embarrassed, and they might be exposed to legal claims of discrimination.

All in all, laws ostensibly intended to protect disabled students arguably do more to protect colleges from having to defend lawsuits.

7. Back to “Understanding”

Understanding moves disability from somewhere over there on a remote island of human experience to the center where all our lives meet.

I subscribe to the claim that the best way to learn about people with whom we have little or no experience is through reading fiction. Unfortunately, in the case of blindness, there is almost no mainstream fiction written by a blind author in which the protagonist is blind but the main storyline is not about blindness. My novel Caroline (2022) is an attempt to fill that gap. The main character, Nick, is a blind lawyer starting both his career and a romantic relationship. An imperfect, three-dimensional character, Nick is someone readers may recognize in themselves or in people they’ve known. A common reaction from sighted readers is that they better understand what it’s like to lead life as a blind person. Some said that as they kept reading, they forgot that Nick is blind, at least until some plot development reminded them.

Not to conflate all disabilities as equal, I suggest that we all have our frailties and so, to that extent, we are all disabled. Some of us are too quick to anger, others too passive; some forever disappointed in themselves, others arrogantly flaunting some seeming superiority; some are plagued by guilt, others by the consequences of childhood deprivations.

Recognition that frailty is human is not empathy, but it can lead to insight. Mild headaches help me appreciate what a migraine sufferer endures, even though I know they are nowhere near as debilitating. It is an insight, and understanding comes from insight.

8. Compassion and Understanding

Compassion undeniably motivates policies and actions that ease the lives of disabled people. It was behind the Americans with Disabilities Act, legislation designed to bring more disabled people into the mainstream. Yes, we may be unable to legislate compassion, but compassion can drive legislation.

On the other hand, understanding, as the word implies, can be purely intellectual. Although it can foster respect, action doesn’t necessarily follow. However, it is understanding that gives compassion its true power. With understanding, we act on compassion free of the condescension of pity.