Three Things Clinicians Should Know About Disability

“Clinicians also wield enormous power over the care and treatment of people with disabilities, a group every human will become part of over the life course. Those who wish to advance their knowledge and improve health outcomes would thus benefit from reflecting upon the meaning of disability and the moral obligations and responsibilities owed to communities of people with disabilities.”

Medical professionals are intimately involved in the lives of disabled people and their families, where they play a number of significant roles. They determine who is and is not considered disabled, provide treatments to ameliorate the medical aspects of disability, and often set the tone for how newly diagnosed individuals and their families appraise the disability. In addition, like nondisabled people, disabled people will at times rely on doctors to help them prevent, diagnose, or treat ailments unrelated to their disability. Biases or miscommunications between disabled patients and nondisabled providers can compromise the quality of care received. On the other hand, medical providers have the power to meaningfully improve the lives of disabled patients by connecting them with appropriate supports and services.

In this article, Dr. Reynolds lays out three interrelated issues that can impact patient-provider relationships across ability lines: assumptions about poor quality of life with disability; ableism; and the distinction between disability, illness, and disease. He then proposes that clinicians have three responsibilities to disability communities. They must practice “disability humility” and be willing to learn about nonmedical aspects of the disability experience; they must improve communication across ability lines; and they must recognize the authority of disabled people as experts on their own lives, and “elevate their voices.”
Three Things Clinicians Should Know About Disability

Special Kids Get Picked Last: “Special Needs” Has Become a Dysphemism

Our data suggest that special needs has already become a dysphemism (a euphemism more negative than the word it replaces). Special needs will likely become a slur, if it is not already, and it might eventually become a dysphemistic metaphor, akin to dumb, lame, crippled, deaf, and blind. These linguistic transitions, along with the data reported here, recommend against using the euphemism special needs and instead using the non-euphemized term disability.

Disability has been called by many names. Perhaps one of the most commonly used, and the most indirect, way of labeling disability is with the term “special needs.” I heard that term a lot growing up, and I never liked it, but I couldn’t put my finger on what I disliked about it. Perhaps it was that the phrase was often used in a condescending way, to signify difference or special treatment, or to refer to a segregated place like a “special needs classroom.”

When I started doing inclusion work, I was thrilled to hear fellow self-advocates sharing my dislike for the term “special needs” and advising that we just use the term “disability” instead. We can debate linguistic reasons why one term is better than the other, but ultimately, I’m interested in using the term that is most likely to lead to positive, inclusive interactions with nondisabled people. So, I was fascinated by a research study comparing how a dults in the United States (most nondisabled) judge individuals when they are labeled as having a disability vs. having special needs. (Full article is linked at the end of this post).

Dr. Morton Ann Gernsbacher and colleagues at the University of Wisconsin-Madison designed an online study where participants read through six scenarios. In each scenario, they had to rank-order their preference to partner with four different individuals. For example, in one scenario the participants read descriptions of four potential college roommates and ranked them in order of whom they would prefer to room with, while in another scenario, they rank-ordered four potential basketball teammates, and in a third, they rank-ordered possible partners for a cooking class. The researchers randomly shuffled the scenarios for each participant, so that each participant saw one scenario where one of the potential partners had “special needs,” a different scenario where one of the partners had “a disability,” and a third where one of the partners was labeled with a specific disability (randomly assigned to be either a sensory or a neurological disability). Besides the disability labels, the partner was described in an identical way for all participants. The researchers looked at the participants’ rankings and calculated, across all the participants and scenarios, how often the partner with special needs/a disability/a specific disability was ranked last.

By random chance, each partner should be ranked last about 25% of the time. So when a particular partner was ranked last more than 25% of the time, this signifies discrimination. Indeed, when the partner was labeled as having “a disability,” discrimination occurred, with the partner being ranked last 33% of the time on average. Discrimination also occurred when the partner was given a specific disability: across the different types of disabilities, they were ranked last 35% of the time. But the worst discrimination occurred when the partner was labeled as having “special needs.” Under that condition, across scenarios, they were ranked last 40% of the time. Statistically, partners were significantly more likely to be ranked last when they were labeled “with special needs” than when they were labeled either “with a disability” or with a specific impairment.

At the end of the study, the researchers also asked the participants to write down the first five words that came to mind when they saw the term “special needs” and the term “disability.” They categorized the responses and found that when the participants were thinking about “special needs,” they wrote down more negative words like “annoying,” “helpless,” or “needy” than when they were thinking about “disability.” In contrast, when thinking about “disability,” the participants wrote down more positive words like “strong,” “capable,” or “acceptance” than when they were thinking about “special needs.” In addition, the term “special needs” was associated more often with intellectual/developmental disabilities, whereas the term “disability” was associated more often with physical impairments. So, it is possible that some of the bias observed could reflect the heightened prejudice and stereotyping against people with intellectual and developmental disabilities compared with physical and sensory disabilities.

What’s wrong with saying “special needs?”

The researchers postulate three reasons why “special needs” might evoke more discrimination than “disability.” First, the term “special needs” is imprecise. When someone is labeled as having “special needs,” it is unclear whether they have an impairment at all, or how severe that impairment is. So, people might assume the worst, or feel uncomfortable with the ambiguity. Second, “special needs” is often associated with segregation: Institutions like “special education,” “special needs classrooms,” or “Special Olympics” are all, by definition, segregated to only serve disabled people. The phrase “special needs” may implicitly justify segregation, giving segregated institutions the praise of being “special” while implying that people who attempt to be included in the broader community (e.g., applying for a college roommate in an integrated dorm) do not belong. Third, the researchers cite examples of “special needs” being conflated with “special rights” or “special treatment.” The term “special needs” may activate feelings of envy that nondisabled people sometimes direct toward disabled people whom they perceive as unfairly taking “special” privileges.

Perhaps a phrase is just a phrase. And, what really matters is how we treat one another. But, this study shows that phrasing does matter. People can discriminate in very real ways based on first impressions, and when one person is described verbally to another, initial labels can set a powerful tone for those first impressions. This may be especially true when a parent or caregiver is speaking for a disabled person-someone who is too young to speak for themselves, or needs communication support. Describing such an individual as “having special needs,” even with the best of intentions, could make it harder for that individual to be accepted or valued in community settings, be it a daycare center, a sports team, a school, an adult recreation program, or a job.

In recent years, disabled people have pushed to replace the euphemism “special needs” with the straightforward term “disability.” However, many nondisabled people, particularly parents, educators or caregivers of disabled people, cling to the term “special needs.” This has resulted in another polarized debate between disability “insiders,” advocating language that they have claimed as identity-positive, and “outsiders” using language that is personally comfortable for them. A more disturbing development is the widespread use of the phrase “special needs parent,” which nondisabled parents may use to describe their own identities or experiences without regard to their child’s identity or language preference. While nondisabled parents certainly should be able to share their own experiences raising disabled children, it is important that they are sensitive to the complex history of ableism, including the ableism captured in language. As the researchers point out at the end of their paper, phrases originally intended to be euphemistic-like “special needs”-can eventually become “dysphemisms,” words with more negative connotations than the words they are replacing. Like other disability terms, “special” is even being used as a generic insult. Rather than just trading out euphemisms every few decades, we must work to stamp out the underlying biases and stereotypes that lead us to want to use euphemisms in the first place. Disabled people, including those with intellectual/developmental disabilities who are frequently stripped of their voices, must be front and center in that process.
Read the full study here

The “With Autism” Series [Repost]

My friend joked that they needed a bumper sticker that said “Autism is my co-pilot” since they were clearly driving with autism (as opposed to driving while Autistic.)

This weekend, I’m at the National Federation of the Blind of Virginia convention with 22 blind students! While I’m off doing that, I’ll leave you with this humorous piece about the limitations of person-first language. Be sure to get your gear if you’re a “person with autism” or know someone who is!
The “With Autism” Series

Blind in the City: The Elusive “Over There” and Other Ambiguous Communications

“Can you move down a little bit?”
“Scoot up please?”
“It’s over there.”
“That way…”
“Excuse me …. Excuse me ….!”

These and similar phrases are uttered on a regular basis in our culture. And for most people, they seem to pose few communication problems. But for me, all of the above phrases, without context clues, can leave me baffled.

When someone asks me to “move down” or “scoot up” I know they are not literally asking me to move toward the ground or toward the sky, respectively. But the terms “up” and “down” can be used to signify forward, backward, right or left. I’m assuming that sighted people gain clarity from some kind of visual cue; I can’t be sure about that, but somehow the ambiguity is resolved for them.

Similarly, many a blind person has bemoaned the frustration of being told that something is “over there.” For fun, I looked up the phrase “over there” in the dictionary, and found that it is defined as “a short distance away” with no clues about directionality. Is it a short distance to my left? Right? Front? Back? Diagonal? Again, I am told, this ambiguity is resolved for sighted people through gestures or pointing.

Finally, the phrase “excuse me” has a multitude of meanings. It can mean, “I want to get your attention,” “I want to pass you” (without a hint as to which direction I’m passing in) or “”Excuse me, I just passed gas in your presence.” How do we know what you mean?

While nonvisual communication can be challenging for folks who are used to punctuating their words with visual cues, it need not create an impasse between blind and sighted communication partners. Here are a few hints for communicating more clearly with a blind person:

  1. Use the terms right and left, but only if you are able.

  2. “Right” and “left” are unambiguous spatial terms. A person’s right side will always be on their right. Directions involving right and left thus don’t rely on any visual reference point. Consider giving information such as:
    “It’s the last door on your right.”
    “Could you scoot to your left, please?”
    “Excuse me, may I pass on your right?”

    There is an important caveat, however. In my life I’ve learned that it is fairly common for individuals to confuse left from right. This seems common enough to be its own form of neurodiversity. Thus, I sometimes get directions that are physically impossible for me to follow, like being told to turn left when there is a wall on my left. I’ve also had the confusion of someone telling me to turn left while cuing me to the right in other ways (like pointing their voice to my right or trying to physically point me to my right). This seriously scrambles my brain! In these instances, it is better not to get any directions at all than to get directions that are flipped. Furthermore, since some segment of the population has left-right confusion, it is likely that some blind individuals also experience left-right confusion and have trouble receiving information in this way.

    So, if you have a firm grasp of left from right, feel free to communicate directions in this manner. If left-right confuses you or your communication partner, consider the next suggestion:

  3. Use auditory, tactile or physical reference points.

  4. Sighted people communicate using visual reference points, like pointing to an object. When communicating with a blind person, you can use reference points accessible to our other senses. If the blind person is hearing, you can use your voice as a reference point to signal directionality. For example:
    “Could you move toward my voice?”
    “This way…” (turn and walk in the desired direction).
    You can also generate a sound cue by gently tapping on an object (if it’s appropriate for the setting). If cuing someone with your voice, let the person follow behind you, instead of trying to guide them from behind.

    Another good reference point is to communicate using landmarks on the person’s body, especially when describing physical moves (to teach dance or yoga, for instance):
    “move toward your feet.”
    “Put your left hand on your right thigh.”
    “Move to the front of your mat and face away from me.”

  5. Use touch, but only with permission.

  6. Sometimes touch is really the most effective way to convey complex spatial information, especially in cases where hearing is less effective (a deaf-blind person, a loud setting, or a very quiet one, etc.) If the relationship is not a familiar one, always ask permission before maneuvering a person’s hands to convey information. Keep in mind that we use our hands and our canes to get essential safety information as we move through space. While touch can be helpful, if it is not timed right, it can also interfere with our orientation process. For example, I use my hands to locate the back and seat of a chair before sitting down. Sometimes someone will, with all good intentions, hold one or both of my hands while I am trying to sit down in a chair, which feels very unsafe. A better strategy is to either verbally cue where the chair is, let me locate the chair myself using my cane, or simply place my hand on the back of the chair and then leave me to sit down. Never use a blind person’s cane as a pointer because we need our canes to be on the ground picking up essential information about what is on the ground. Instead, and only with permission, you can point the person’s other hand in the desired direction. Another touch-based strategy is “hand under hand” in which you simply model an action while the blind person places their hands on top of yours to learn what you are doing.

Related Reading:
“Over There”

Babysitting a nonspeaking four year old [Repost]

I recently stumbled on an excellent blog,
In this Blog, Ruti Regan re-interprets the concept of “social skills” as a set of skills we can use to interact with one another in an ethical, respectful manner.

In the post below, Ruti responds to a reader question about how to interact appropriately with a nonspeaking child. The suggestions offered can guide us toward respectful interaction with people of all ages who communicate differently than how we expect-whether through unusual speech, a different spoken language, sign, pictures, or a self-taught method. One of the most important points Ruti makes is that all people have thoughts and feelings worth listening to. When we expect that the person has important things to communicate-and not just needs, but also wants and preferences-communication and mutual respect become much more attainable.
Babysitting a nonspeaking four year old