Two Years of Paratransit: Sad Truths and Hard Lessons [Repost]

“Still, we mustn’t get complacent. Paratransit has many deeply-rooted problems, and since it fills service gaps for so many people, we need to fix what we have rather than tearing it all down in a fit of cynicism, or dismissing those who still use it.”

One of the greatest challenges disability can bring is the inability to drive. Public transit is a viable alternative for some of us, but public transit in its current state carries a number of limitations making it an impractical option for many. For example, people whose disabilities limit how far they can walk, how long they can stand or sit outdoors, or how well they can orient in unfamiliar environments may find that public transit doesn’t meet their needs.

“Paratransit” is a door-to-door transit alternative available in many urban areas, designed for seniors and people with disabilities. Customers can get door-to-door transportation at a cost only slightly higher than the cost of the public bus or train. Many of us depend on paratransit to get to work, school, shopping, important appointments, or social outings. As this post illustrates, though, many paratransit systems have multiple problems that can cause significant hardship for customers-earning such unaffectionate nicknames as “para-stranded” or “Dial-a-Wait.” While some of the problems may result from systems not having enough money to go around, others may be fixed with better training and a change in philosophy.
Two Years of Paratransit: Sad Truths and Hard Lessons

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

How to Quit the Disability Blame Game

In centuries past, disabilities were often blamed on supernatural beings. It was thought that a child’s disability was bestowed as punishment for the parent’s sins, that an adult’s disability was punishment for their own sins, or that deities used disability as a way to test one’s faith.

In the 21st century, such theories have fallen out of favor in the western world. However, the tendency to blame someone or something for disability is stronger than ever. Too often, parents blame themselves for their child’s disability: They blame themselves for contributing “bad” genes (even if they didn’t know they carried such genes); and mothers may blame themselves for pregnancy or birth complications that led to a child’s disability. Tragically, such self-blaming is often reinforced by the reactions of others, fixating on what caused a child’s disability, sometimes implying or even stating that a mother must have “done something” to cause it. Other groups of people blame disabilities on environmental agents: “anti-vaxers” blame vaccines for autism; childhood learning or behavioral impairments may be blamed on omnipresent substances like gluten, food additives, or airborne toxins. And, when adults develop chronic health conditions or disabilities, they are sometimes blamed by others for becoming disabled through poor health choices, or for not doing enough to manage their own impairments.

Why are we, as a society, so obsessed with finding someone or something to blame for disability?

Blaming is actually an important aspect of human behavior. When we search for the cause of an event, we gain the ability to predict and control that event. As a species, our survival depends on how accurately we can control our environment to promote desirable phenomena and prevent undesirable phenomena. When disability is so often seen as an undesirable phenomenon, we can become driven toward finding its causes in order to control it.

Furthermore, disability blaming helps us manage our own fears of the unknown, the uncontrollable, the possibility that we may be touched by new disabilities at any moment. As long as we can pin disability on something someone else did, we can feel confident that the same thing will not happen to us or our children. Or, if we pin disability on something measurable and avoidable in the environment, like a vaccine, we can feel confident that as long as we or our children avoid that thing, disability will not touch us.

So, disability blaming can be functional. But it is also clearly harmful. Disability self-blaming creates emotional turmoil for parents, and can distract them from the important work of equipping their children with tools and self-confidence. Blaming others for their own disabilities leads to stigma and exclusion. And when disability is erroneously blamed on an environmental factor, such as autism being inaccurately blamed on vaccines, the consequences for society can be destructive. Vaccine avoidance harms not only the autistic community, but also those who are no longer protected by herd immunity. Or, families may fall victim to unproven quack theories about the origins of disability, when peddlers of such quacks take advantage of a parent’s need to predict and control disability in their child.

How do we walk away from the blame game?

We can start by examining what we do know about the causes of disabilities. Most disabilities are simply nobody’s fault. I will repeat this because it is so important: Most disabilities are nobody’s fault. Genetic disabilities appear when DNA randomly changes during the process of replication. This has been happening since the beginning of time. When a sperm and egg line up that happen to bear the same DNA mutation, or when one parent contributes a “dominant” genetic mutation, then a child is born with a new trait. Sometimes that trait is brown eyes instead of blue; other times, it’s a disability. Sometimes, acquired disability arises from an accident or illness; in most cases, this, too, is nobody’s fault. Occasionally a disability can truly be blamed on a specific individual (as in the case of disabilities caused by abuse or neglect). Even in those cases, though, focusing on blame for a deed that cannot be undone distracts us from moving forward and accepting the “new normal” of disability.

So, perhaps we need a better phrase in our language to capture the concept of “nobody’s fault.” Then, when we need to pin disability on something, we can simply pin it on “nobody’s fault.” But, that doesn’t completely solve the problem, because “nobody’s fault” is something we cannot predict or control. We need to find a way to overcome our fear of the uncertain and the uncontrollable. Anyone who knows me well will be surprised to see me giving this advice, because I’ve always struggled with uncertainty. It’s gotten easier as I’ve aged, but even today an unanswered email or an ambiguous conversation can fill me with anxiety. Heck, I’ve even previewed the ending of a book more than once because I just couldn’t stand the suspense of waiting another 20 chapters to find out what happens. In fact, I went into the field of psychology because I was so attracted to the idea of being able to predict and control human behavior through science, and to get reasonable clarity on the causes of puzzling human actions.

But, in order to relinquish our obsession with blame and accept disability as a natural part of the human condition, we must find a way to accept the uncertainty and unpredictability of human difference. The fact is that disability can touch any of us at any time. When it comes, it can bring some unwanted consequences. But ability differences also enrich the diversity of our species. Disabilities can lead to unexpected discoveries and connections. We may not be able to control the arrival of disability, but we can control our response to it. If we can learn to embrace the chaos of disability, or at least to tolerate it, perhaps we can find our way from blame to acceptance.
Related reading:
Let’s Not Play the Blame Game: Parenting, Disability and Social Stigma

on the Desexualization of Disabled Women

One of the most pervasive stereotypes about disabled people is the idea that we’re uninterested in, or unfit to be in, sexual relationships. This stereotype affects both disabled men and women, but because women’s social standing is so often tied to our potential roles as wives and mothers, disabled women frequently experience a particular brand of ableism.

Disabled women face a heightened risk of sexual abuse and assault. In addition to this, we often encounter more subtle, unintentional actions-particularly from nondisabled men-that serve to infantilize, desexualize or violate us. Like other “microaggressions,” people who do these things may not even realize that they are doing any harm.

Recently a Facebook friend of mine asked her disabled, female-identified friends to describe these kinds of experiences we have had with nondisabled men-particularly unintended violations that may come under the guise of helpfulness. The below list is a combination of the responses on this Facebook thread, my own encounters, and those of my close female-identified disabled friends. I share it with the hope of making readers aware of the kinds of things that can happen and how they can be prevented. A caveat: Many of these microaggressions are also committed by women; however, the gender dynamic between a male and female (particularly when the nondisabled male holds power, such as the case of a male taxi driver and a disabled female passenger) makes the below actions especially problematic.

  • Women described being “guided” or lifted by unfamiliar men, in the name of helping, but in invasive ways (e.g., with hands under the arms, on the shoulders or on the hips) without permission. Or, during casual conversation, having a male acquaintance rub or pat their arm or leg.

  • On a related point: having male taxi or Uber/Lyft drivers buckle them into a seatbelt, without permission and even when they were physically capable of buckling themselves in.

  • Having a man place a woman’s hands on their body or on an object, particularly if the woman is blind, as a way of “showing” something (again, without permission) or having a man push a blind woman to touch his face (either as an attempt at a pickup line, or under the myth that blind people like to explore faces by touch).

  • Verbal blends of ableism and sexism: Men on the street shouting comments such as “You’re too pretty to be disabled” or “You’re skinny for a blind person.”

  • Some women with service animals said that strangers (on the subway, for example) would casually reach between their knees to pet their service animal. Or, a stranger might reach down between a woman’s legs to “help” her retrieve a dropped item. (Again, both men and women perpetrate these actions, but it is more threatening when done by a man).

  • Invasive questions: Several women described having male Uber/Lyft drivers, for example, ask if they lived alone, which is especially invasive if the driver is taking them home. Others said they were asked by strangers if they have romantic partners, how they have sex, how they put their clothes on, or “who takes care of” them.

  • Shocked reactions when women reveal that they are dating someone, engaged, married, pregnant, parenting or interested in parenting.

  • Being obviously ignored as a potential dating partner. I had the experience a few times in high school and college, when a guy would be very friendly toward me, seeking me out for conversations, asking for my phone number, even inviting me out on what I thought might be a “date” and I would later find out that the guy either had a girlfriend the whole time, or simply showed no romantic interest. Another time, at a middle school dance, a very attractive, popular boy begged me to have the last dance with him, then never spoke to me again (making me wonder if it was a bet).

  • Being called infantilizing pet names like honey, sweetie, or baby, and spoken to in an infantilizing tone of voice.

  • A blind lesbian acquaintance of mine said that someone once told her that if she could just see what men looked like, she would be straight.

  • A disabled person who is gender-nonbinary was asked if they knew the difference between men and women.

  • A man following a disabled woman, or asking where she is going, under the guise of being helpful.

  • And many variations on the above, some well-intended, others not so much.

What steps can nondisabled men, and women, take to reduce these microaggressions?
The answer is actually quite simple:

  • Start by understanding that disabled people, including those of us with cognitive disabilities, experience all sexual orientations and gender identities; have sexual boundaries; and many of us desire, and participate in, intimate relationships.

  • Before performing a particular action toward a stranger with a disability, ask yourself, “Would it be socially acceptable to say/do this to a nondisabled stranger in my culture?” If the answer is no, don’t do it.

  • If you ever have any doubt as to whether a disabled person desires hands-on support with a task, ask first. For example: “Do you need any help with your seatbelt?” is a thousand times better than wordlessly coming up and buckling the seatbelt. By asking first and respecting the answer, you can never go wrong.