What Should I Say? Communication around Disability

Subtexts

Although this encounter held many layers of meaning for me, one aspect is shared by all persons with visible disabilities: the implicit embargo on spoken words and the volumes of unspoken thoughts permeating our relationships with others, even our passing greetings. Communicating around disability is hard on both sides. People often don't know what to say or where to look. Silence frequently subsumes a complex tangle of fears, discomforts, and uncertainties. Other times, similarly complicated feelings prompt spoken words of many stripes: generous, tentative, hurtful, intrusive. As Sally Ann Jones, a woman with MS, said to me: “Some people see you're in a wheelchair, and immediately they raise their voice as if you are deaf. I mean, you're some kind of handicapped. They're not quite sure what to do. People aren't comfortable with handicapped people.”

For those of us with disabilities, silence is often the default position. We ourselves are uncomfortable talking about our disability, concerned about breaching that invisible barrier circumscribing socially acceptable discourse. We think, generally erroneously, that silence protects our precious privacy.

But silence carries consequences. As Mrs. Jones said, “In some ways, it's your obligation to kind of educate them and make them more comfortable.” Silence reinforces the stigmatization of disability, the sense of shame and guilt, and the idea that disability is something to hide. Nonetheless, opening communication around disability is difficult. What should I say? What should you say to me? One place to start is with examples of communication gone awry-what not to say or do. I have innumerable examples taken from my experiences and from stories told to me.

Failed Communication

Becoming Invisible

Persons in wheelchairs live below the eye level of most standing adults. Nonetheless, something other than this physical fact must make us sometimes invisible. Positioned strategically in full view of others, we often remain unnoticed. One example of this phenomenon involved a physician colleague, Megan Martin. After Megan had a complex metatarsal fracture, her orthopedist insisted that she stay off her foot for 6 weeks. I encountered Megan on her return to work, and she was frantic. Her clinical and administrative offices were far apart; on crutches, the trip had taken 45 minutes, and she was exhausted. How could she manage the multiple trips per day that were required? The solution seemed obvious. “Why don't you rent a scooter like mine?” I suggested.

As I expected-and fully understood-Megan's initial response was unenthusiastic. “People will think I'm a wimp,” she worried. I did not argue; certainly they would. “I'll think I'm a wimp.” That was undoubtedly true, too. In 2 days, she had rented a scooter. Later, Megan acknowledged that she couldn't have managed without the scooter, but she had remained uncomfortable and rarely left the building in it.

“[It's as if] you're not there. The few times I did take it out, it was almost impossible to get through a crosswalk before the light changed. People are crossing in front of you. I'd be sitting right at the curb, waiting to go, and somebody would walk right in front of me and then just stand there and chat for a while. Well, they can run when the light changes. I thought, this is crazy. People don't want to see you; they're not going to see you … .”

One day after the 6 weeks had ended, Megan was standing outside my office, balanced on crutches. Nick, another physician and a nice man, approached her. “Megan, did you do something to your foot?” he asked. Nick had been around when Megan had been using the scooter. How could he not have noticed? Megan told me afterward that many people reacted the same way. They did not inquire about her injury while she used the scooter, but when she resumed the use of crutches, they asked whether she had hurt herself.

“It was amazing. It wasn't apparent what was going on until the day I was upright. And then it just hit me. Everybody knows now. Finally, they're noticing I've got a broken foot. Where were they all this time? It was very striking. It went from as if I wasn't there one day, and all of a sudden I'd come back after being absent for a month. The whole time it was really uncomfortable for people.”

Seen but Not Heard

Although seen, sometimes we are not heard. For example, returning to Boston after a business trip, a colleague pushed my airport-issue wheelchair to the gate. The agent processed our tickets and addressed my colleague.

“Here's a sticker to put on her coat,” the agent said, gesturing toward me with a round, red-and-white-striped sticker.

“Why?” I asked.

“It will alert the flight attendants that she needs help,” the agent replied to my colleague.

“Thanks. If I need help, I'll ask for it.”

“But the sticker indicates she needs assistance.” My bemused colleague remained silent.

“When I need help, I'll ask for it.”

“So she won't wear the sticker?”

“No, I won't.”

“Why won't she?”

“Because I can ask for help.”

“Why won't she wear it?”

This was going nowhere. I looked at my colleague, imploring her to stop this silliness. “Because it's demeaning,” she said and rolled me away.

Not Asking

Admittedly, many people with disabilities hesitate to ask for help. We are often proudly self-sufficient, and requesting assistance is hard. Sometimes we are stopped by implicitly being on the lower rung of that inevitable hierarchy of human relationships. In these instances, the right thing would be for the other person to ask us what we need, as suggested by these two examples.

A colleague, Andrea Banks, told me about her patient, a young man with progressive debility from cerebral palsy. He uses a wheelchair and is brought to appointments by his aunt. Andrea said that the first few times she examined him, she had him sit in his wheelchair rather than get up on the examining table. She thought that would be easier for him, but she never asked him if that was what he wanted. One day, the nurse told Andrea that the patient's aunt had complained, “Dr. Banks never even asked my nephew to walk to see how he does.” The patient and his aunt were concerned that his walking had grown worse, and they wondered how Andrea could evaluate this when she had never seen him walk.

During a third-year clerkship in medical school, my MS flared up. I could no longer use the stairs when rounds with the attending physician traveled among beds scattered across several floors. As the team entered the stairwell, I went to the elevators, hoping to arrive at the next floor in time to see the team down the hallway en route to the next room. I was still in my “tough it out, don't talk about it” mode, but it nonetheless hurt that neither the attending nor the residents seemed to notice my visible difficulty in walking and left me behind. I was also timid. At that point, my attendings seemed to hold my destiny in their hands. I did not speak up until the attending paused during the closing of a fairly brutal exit interview at the end of his month.

“Didn't you notice I was having trouble walking?” I ventured.

“I did,” he responded. “But because I understood you wanted to be treated just like other students, I didn't ask.”

Saying Too Much

Persons with physical disabilities are frequently grabbed or touched by persons unknown and unasked. In general, this seems to be motivated by genuine efforts to help. Sometimes it preserves our physical safety, as it did when I was lifted off a busy Washington, D.C., street by several strangers after my wheelchair tipped over in a pothole. Nonetheless, unrequested physical contact can be unnerving and physically uncomfortable. Similarly, conversations can cross acceptable boundaries even if others are trying to be kind.

For example, late one evening during a third-year clerkship, I was completing my write-up at the deserted nurses' station. The new resident approached me with instructions, making it obvious that he was unaware of my situation; because of the risks posed by extreme fatigue, my neurologists refused to allow me to take call. I had asked the clerkship director to communicate this to my supervisors because I was shy and embarrassed.

When I informed the resident of my situation, he instantly responded with a barrage of questions. What neurologic tracts were involved? Was I incontinent of urine? Of stool? My legs were tremulous, and, yes, I was concerned about driving home. I answered dispassionately, as if making a clinical presentation. Apparently satisfied as to the nature of my impairment, the resident led me, virtually by the arm, out the front door of the hospital and to the taxi stand. He placed me in a cab, telling the driver to take me home and to return the next morning at 6:00 a.m. to bring me back. The resident paid the driver a generous sum. Despite this somewhat surreal interchange, the resident's concern was palpable.

Suspicions

Nowadays, attitudes about so-called “entitlement” can filter down into individual encounters. The major contact that many physicians have with disability is filing forms for patients anxious to obtain dispensation from the government or employers. Physicians tell me that this often makes them suspicious of patients' motivations. Certainly, some patients do manipulate the system. However, suspicions are readily communicated nonverbally, especially to persons sensitized by embarrassment about their impairments. Judgmental disbelief is hurtful. Proving that what we experience is real can become a daunting task. As Mabel Bickford, an obese woman with bad knees who uses a wheelchair, said tearfully about talking to her physicians:

“A lot of times I don't say anything, because if things get too out of control with my doctor, then emotionally I'm drained for the rest of the day. They just think that you don't want to walk. You just want to be in the wheelchair; it's comfortable. Well, you try it! I'm sure this plastic cuts my legs.”

Being Invalidated

A common thread of failed communication is that persons with disabilities are somehow invalidated. In the most egregious instances, the invalidation is explicit, as suggested by two examples from medical school.

One day, I encountered an attending physician, Dr. Winston, in a hospital lobby. “Hi, Lisa,” he greeted me in a friendly way. “It's so good to see you.”

“Hello, Dr. Winston,” I smiled.

“You always seem so cheerful when I see you,” he said, pausing thoughtfully. “That must be one of the benefits of the inappropriate euphoria of MS. The inconvenience of MS is compensated by you always feeling happy. That must be why you are so generally pleasant.”

That was definitely a conversation stopper. What did Dr. Winston mean? Any retort would be filtered though his faulty perceptions of my mental state and thus invalidated (for example, “she's just being overemotional-it's her MS”). This encounter raised a nagging doubt: Are even my emotional stability and intellect under suspicion?

On my first day in the operating room during my surgical rotation, the attending surgeon let me hold a finger retractor during a delicate procedure. After the concentrated silence broke and closing began, the surgeon turned to me.

“What's the worst part of your disease?” he inquired.

Embarrassed by the assembled team of residents and nurses, I replied, “It's hard to talk about.”

“Do you want my opinion?” he asked. The scrub nurse rolled her eyes at me empathetically. “You will make a terrible doctor,” he continued. “You lack the most important quality in a good doctor: accessibility. You should limit yourself to pathology, radiology, or maybe anesthesiology.” He turned to the anesthesiologist. “What do you think?” They planned my career.

Conversation in a Politically Correct Age

Finally, in the “politically correct” 1990s, disability has joined those topics in which language matters. Some disability advocates emphasize words, preferring, for example, “person who uses a wheelchair” to “wheelchair-bound patient.” Although these preferences have solid rationales (for example, focusing on persons, not assistive devices), heightened semantic sensitivities undoubtedly chill some efforts at conversation with people who have disabilities. Our conversational partners are afraid of offending. Although I appreciate these difficulties, I believe they are quickly transcended by expressions of mutual respect and genuine interest, even if awkwardly phrased, and simple actions (for example, sitting down to be on the same eye level). As I suggest above, those of us with visible disabilities are conditioned to be “on guard.”

The 1990 signing of the Americans with Disabilities Act brought the possibility that speech could convey discriminatory attitudes and presage actions that are now illegal. In retrospect, some positions expressed to me and actions taken during my 4 years in medical school (1980 to 1984) would probably be illegal under the Americans with Disabilities Act, which requires reasonable accommodations for persons with disabilities. For example, late in my third year, I began thinking about applying for an internal medicine residency. At a student dinner, I sat next to a leader at an affiliated teaching hospital, and I boldly asked his advice. I could not stay up all night, but few other accommodations seemed necessary.

“What would your hospital think of my situation?” I asked.

“Frankly,” he replied in a conversational tone, “there are too many doctors in the country right now for us to worry about training handicapped physicians. If that means certain people get left by the wayside, that's too bad.” There was silence around the table. During the next months, I received little support from my medical school, and after a wrenching internal debate (which was joined by my caring and realistic husband), I decided to go straight into research.

I cannot imagine that anybody would say such things now as that hospital leader did in 1983. However, although legislation can regulate actions, it cannot control thoughts. Changing pervasive societal attitudes about persons with disabilities is clearly a long-term undertaking.

So, What Should I Say?

Communication is a two-way street. Both partners control-albeit sometimes unequally-conversational directions and outcomes. Therefore, my suggestions address persons on both sides of the issue.

For Persons with Disabilities

We should realize that many people have difficulty talking to us because of deeply embedded, complex emotions. Although overly simplistic, one explanation is certainly fear. Disability defines the one historically disadvantaged group that everyone can join in a flash. Perhaps the most obvious stigmata of disability is loss of control; this prospect terrifies Americans, who are used to being in charge. One way to forestall this horrific possibility is to invalidate those who personify it.

Persons with disabilities constantly teach others about what our lives are like and, thus, what theirs may become. I take this educational role seriously, although I try to do it by just living my life. However, although it is desirable to aim for patience in frustrating situations, total equanimity is unrealistic. Sometimes people seem oblivious to the effect of their words or actions; saying something tart and corrective may vent our irritation and improve the situation (for example, motivate someone blocking our way to move). We must contend with being dismissed: “She's just upset because she's handicapped.” Nonetheless, sometimes we should lighten up. Especially in casual contacts, one cannot alter firmly rooted attitudes. We frustrate ourselves rather than change minds.

Communication with physicians deserves special mention. Persons with disabilities, especially those progressively impaired by chronic illness, must talk directly to their physicians about their functional needs. For these patients, the discussion of acute concerns often consumes clinical encounters, and functional issues remain unaddressed. Certainly, many physicians skillfully evaluate functional impairments and intercede to improve lives (for example, by prescribing physical therapy, assistive devices, or home modifications). Others, however, do not. Mrs. Jones described how her physician told her that she had MS:

“The doctor spent about a minute and a half with me, and then he said, ”The bad news is, Mrs. Jones, you have MS. The good news is, when I saw you before, I wrote down three potential diagnoses in my notes. If you'd had either of the other two diagnoses, you would be dead by now.“ Back then, he never mentioned that to me. I said, ”Why didn't you tell me?“ He said, ”The symptoms of the other diagnoses would have been so bad, you would've had to return, and I didn't want to upset you unnecessarily.“ And with that, he left. He didn't tell me what to do. He didn't say, ”Do X.“ He didn't say, ”Come back in 6 weeks.“ He just left. Period. He spent about 10 minutes, beginning to end. I was absolutely in shock.”

Part of the problem is medical education. Many physicians know little about assessing and addressing functional problems. Until recently, most medical students were trained exclusively in inpatient settings, where acute illnesses or acute exacerbations of chronic disease are the focus. Nevertheless, another explanation is that physicians are people, too. Physicians also experience fears, discomforts, and uncertainties about confronting disability that they cannot cure. In many instances, we must educate them.

For Persons without Disabilities

My first advice is to offer us choices and options. “Do you want help?” “How can we make things better for you?” Listen, and then respect our answers, even if they are a repeated, “No, thank you.”

My second suggestion is for you to ask yourself: “Why does talking to this person make me uncomfortable?” This need not involve prolonged soul searching. The reasons will probably be obvious; potential solutions will readily follow. For example, many people tell me that they fear saying “the wrong thing.” Acknowledge this fear openly: “Look, forgive me if I say something stupid.” Remember that those of us with disabilities are awkward with words, too. We are often equally anxious to ensure productive communication.

Third, avoid doing what I did here-framing the argument as “us against them.” I used this rhetorical device to explicate my arguments. Nonetheless, the well-worn phrase “we are all human,” although trite, is true. The most visible feature that distinguishes you from me, perhaps, is my wheelchair. Each of us, however, carries private histories that differentiate us from all others; for some of us, only this one distinguishing feature is visible. For everyone, the joys and sorrows, hopes and fears that define our inner lives are invisible. Communication among people is always challenging for innumerable reasons. Identifying the role that disability plays is the first step in removing it from that complex mix of impediments.

Finally, if words and actions are obviously caring and respectful, communication will almost always be positive. For example, near the end of my first year of medical school, I was hospitalized briefly when I became completely unable to walk. Although I had tried to keep my situation secret, a classmate whom I barely knew came to my bedside one night.

“Gosh,” he said reverentially, “I hear you have a really serious disease.” The class had just learned about MS in neuropathophysiology.

“I guess so,” I replied, uncertain what to add.

“Gosh.” He paused again, obviously lost for words, but then he rallied. “I brought you a cheesecake,” he said. He handed me a big box and retreated hastily. When spoken with warmth, even awkward words are wonderful.

Lisa I. Iezzoni, MD, MSc

Beth Israel Deaconess Medical Center; Boston, MA 02215