Down to the Struts, Episode 1: Getting Wise About Disability

Earlier this week, my friend Qudsiya Naqui interviewed me for a new podcast series called Down to the Struts. On this episode, Qudsiya and I talk about the history of the disability rights movement, including the ADA and what this landmark legislation left out; the experience of reconciling multiple minority identities; and the surprising innovations we all use every day that were originally created as disability accommodations. A transcript is included alongside the audio recording.

Listen and Read the Episode Here

Our Current Expertise Crisis

I’m in a Facebook group for people with my eye condition, Lebers Congenital Amaurosis or LCA. On Monday, someone posted in our group, noting that the reported incidence of LCA has increased in the last two decades. She wondered whether this was related to increased vaccine use. Astonished, I looked at her profile, and found several posts condemning “big pharma, CDC, WHO, and Bill Gates” for orchestrating the current COVID-19 lockdowns.

I’m not giving anti-vax ideologies any space on this blog. They not only endanger people’s lives, but they are deeply ableist in the implication that it’s better to risk a deadly disease than to develop a disability, be it autism, LCA, or anything else.

But this post is indicative of a more disturbing intellectual crisis. We are embroiled in a crisis of truth. In recent months, as real news has been declared fake, fake news becomes real. A fringe of individuals and groups are rejecting the validity of widely accepted public health expertise. We live in an age where anybody with a computer or smart phone can tout themselves as an expert. They can do a little online research, learn some popular medical jargon, get on social media and promote any number of conspiracy theories or quack treatments to their followers. These individuals are accepted and believed by followers who have lost faith in the traditional expertise system. And perhaps the most vulnerable victims of all are disabled people and our caregivers, people who have been let down by the established experts for centuries.

Within the last century, science and research were used to justify the superiority of one race over another, and eugenics against racial minorities, disabled people, and other groups. There was a time, not too long ago, when the mainstream guidance was to put disabled children into segregated schools and institutions away from their families. More recently, in the age of mainstreaming, people with titles and degrees still advocate normalization as a key part of educating disabled kids. I’ve lost count of how many times I’ve heard a parent say that “We trusted the experts with our disabled child, and now our child is suffering.” Certified educators are requiring many disabled children to struggle to read print with very little usable vision, to speak words they cannot hear, or to suffer through long Applied Behavior Analysis (ABA) regimens designed to hide their autistic traits, for instance.

For far too long, nondisabled experts have used science to justify harmful, ableist practices affecting our lives. Consequently, disillusioned parents may be taken in by the promises of self-proclaimed experts professing to know what caused their child’s disability or how to cure it. Further, many disabled activists have become wary of the natural and social sciences. In recent months, the number of science skeptics is growing at an alarming rate.

Sure, scientific studies can lead to flawed conclusions. Consensual “best practices” can be flawed as well. But that’s a consequence of the human beings running the studies, and their biases, rather than the science itself. Ironically, anti-vaxers often accuse vaccine researchers of conspiring with vaccine makers to fabricate results, but the father of the anti-vax movement, Andrew Wakefield, was himself found to have engaged in blatant fraud.

I’ve heard people criticize scientific bodies, like the CDC, under the logic that because recommendations are constantly changing, we shouldn’t take them too seriously. But this continual change and adjustment is part of the scientific process. As new evidence is acquired and incorporated into older understanding, our models and theories continue moving closer to the objective truth

Disability-related expertise needs to change with the times, too. In my opinion the answer is not to reject bodies of expertise or to make anyone and everyone an expert. I believe we need to continue with the scientific process, but we need to involve disabled people in every level of that process. Science can be employed as a valuable tool to aggregate and quantify the lived experiences of millions of disabled people. We as disabled activists know what kinds of contemporary questions are worth asking. By partnering with scientists and policymakers, we have real potential to shape the future for disabled people around the world.

Embracing Confusion as a Pathway to Growth

During the first 11 years of my life, my mom stayed home with my sister and me. My dad worked full-time in family medicine, but was home by dinnertime most evenings, most weekends, and holidays. In my hazy recollections of my preschool years, I recall Mom as the primary minder of my basic physical and emotional needs. Dad, meanwhile, was my first window into the mental and the spiritual.

Dad was a math major in college. He went to MIT and studied in an artificial intelligence lab, before he realized that he wanted to devote his scientific mind to work with people, not machines. He swerved to a medical degree at Stanford, but never lost his love of numbers or patterns. And he passed it on to me.

When I was three years old, I started going to preschool at the local center for blind children in downtown Phoenix, Mondays through Thursdays. I spent Friday mornings at the local Jewish preschool. Because I was nearly totally blind, with only a small bit of light perception, everyone agreed that I would learn braille. But my parents didn’t wait for the teachers there to start teaching me.

My parents obtained some basic braille alphabet sheets. They knew nothing of the code, but Dad soon mastered its simplicity and repetitive pattern. Each braille character is written in a six-dot grid, three dots high and two dots wide. The shapes of the characters are generated by the combination of dots present in each cell, with the first ten letters made up of different combinations of the upper four dots. Letters K-T are simply made by adding the lower-left dot to letters A-J, respectively. U-Z are formed by adding the lower-right dot to earlier letters, although there is a twist, because the letter W defies the pattern. Finally, the numbers 1-9 are simply written as the letters A-I, respectively, with a “number sign” immediately preceding.

Dad figured out the code and, he claims, taught it to me in a matter of days. As I mastered the alphabet, I quickly memorized the order of the alphabet and each letter’s number within that sequence, with 1 for A, and 26 for Z.

One night, Dad quizzed me on the alphabetic numbers. After a few easy ones, he asked, “This is a tough one. What letter is number 27?”

I was momentarily stumped. I had never considered the alphabet going past 26. It took a few minutes of mental struggle, but eventually I hazarded a guess.

 “A?” I asked tentatively.

“You are correct!” Dad replied, one of his trademark phrases, with exaggerated gusto.

At preschool, I kept working on reading and writing braille. I practiced writing my name, recognizing first letters, then words, and then decoding sentences. I learned the “contractions,” non-alphabetic symbols that save space by representing common pairs of letters, like en or sh. The process of learning to read was a bumpy, twisty ride. I memorized many contractions before I could reliably distinguish the “box letters”: d, f, h, and j, which are made by removing one of the corner dots out of the box that makes g. The letters consisting of two-dot diagonals, e and I, stumped me too. Sometimes letters felt interchangeable. I might know all the letters in a word, but the word itself was foreign, incomprehensible. I often had to ask my parents for help.

On another evening, when I was about 4, I struggled through a basic book. I came upon a word in the middle of a sentence that left me completely flabbergasted. Mom was out that night. I found Dad in the family room.

“What’s that word?” I asked Dad, showing him the page.

He took a long look at the page, then went and got his braille alphabet “cheat sheet,” a printed card showing images of all the braille symbols. He looked at the page several times, tried to decipher the symbols under my fingers, turned back to the cheat sheet. This continued for several minutes, but Dad was as confused as I was. He saw a symbol that wasn’t on his cheat sheet, because it was a contraction.

But then, Dad had an epiphany. “Can you spell it for me?” he asked.

“Yeah! It’s L, A, U, GH contraction,” I said immediately. The problem was soon solved.

“I realized that I didn’t have to learn braille to help you,” Dad told me a quarter-century later, over the phone a few months before I received my doctorate. “Like most kids, you just needed a little help learning how to spell.”

Another night, as I sat on Dad’s lap, he told me about a thing called multiplication. His explanation made no sense. I memorized a few facts from the conversation. Apparently, you could multiply 3 by 3, and you’d get 9. If you multiplied any number by 0, it turned into 0. And if you multiplied anything by 1, it stayed the same. But the rest was a jumble of strange new jargon and gibberish. I jumped down from Dad’s lap feeling thoroughly confused, but it wasn’t necessarily a bad feeling. And in the process, seeds had been planted inside my mind.

In much of the developed world, disabled children are routed through the medical gatekeepers to a system of “special education” with emphasis on “special.” Their parents are often told that their children need to be educated by experts with fancy titles. Historically, disabled children were often separated from their parents for intensive instruction, and parents were told that they would only interfere with their children’s success.

Underlying much of “special education” is the idea that disabilities affect not just activities like seeing or walking, but that they also change how children learn. It follows, then, that the “special educator” needs to manage the learning process, injecting knowledge into a child who cannot learn by osmosis. This is exemplified in the familiar image of Annie Sullivan taming the young Helen Keller by literally pushing signed words into her hand. It’s quite literally top-down instruction, as the taller teacher injects knowledge into the child below.

Often, this intensive instruction is rigid and linear. Earlier prerequisite skills must be mastered before students are taught more advanced skills. A student doesn’t get braille until they’ve passed “pre-braille” and shown “braille readiness.” Parents may be discouraged from showing kids more advanced skills until they have mastered simpler ones. They are cautioned that introducing skills too quickly could result in the child developing “bad habits” that will cause problems later on.

This emphasis on rigid, sequential instruction can artificially slow the pace of learning. And under this philosophy, a student’s experimentation, trial and error, or problem-solving are discouraged. Such activities deviate from the linear learning sequence, and their products do not always appear as measurable progress. “Readiness” or “mastery” may be defined as measurable fluency and the absence of confusion.

Yet everyday experience shows us that children do not learn in this sequential way. Kids are constantly trying new things, testing cause and effect, solving problems on their own volition. Babies wobble and babble long before they can walk steadily or speak clearly. Some kids will jump from barely speaking at all to speaking in full sentences, seemingly overnight. But it’s not magic. These kids have been quietly listening and building connections under the radar for months or years before we hear the fruits of their mental labors. We expose nondisabled children to complex language and literacy long before they can speak or read, and we encourage experimentation and active learning in the ways we teach nondisabled children. This is a bottom-up process, as children link their experiences to broader mental concepts. We can picture it as a child playing on the floor, showing their discoveries to the adults above them.

Disabled kids do sometimes need instruction to be modified. After all, Helen Keller couldn’t access language through any sense other than touch. But disabled children aren’t just passive receptacles of knowledge. We explore and engage with our environments instinctively, too. In fact, as disabled people, our ability to solve problems can make or break our success. We must figure out how to do things in non-standard ways, sometimes without anyone around who can teach us.

Some might say I shouldn’t have touched a single contraction until I knew my alphabet frontwards and backwards. Others might have criticized Dad for exposing me to multiplication concepts before I could add and subtract. But my early academic experiences support a different story. Learning the braille code in a nonlinear fashion, I had mastered it by the time I started kindergarten. And in second or third grade, when the teacher first presented multiplication to us, something fell into place in my mind. I had heard of that thing called multiplication so long ago on Dad’s lap. I didn’t understand it then, but by the time I was developmentally ready to learn it, the pieces came together much more easily than they would have if I had been introduced to the concept for the first time at age 8 instead of age 4.

Neither of my parents were trained teachers of blind students, but they were still my first teachers. They learned just enough braille to help me if I got stuck, but not so much that they could give me all the answers. I was challenged to build my reading and writing fluency through naturalistic exposure. During our tutorials, my dad did not spoon-feed me information. Instead, he presented it for me to explore and take in as I was able. Gradually, all the pieces fell into place.

This month, many students are embarking on new virtual learning journeys. Students and parents alike are struggling to figure out new technologies and solve new access problems. Parents are trying to figure out the best ways to support their children’s learning. The frustrations are real. But, just remember that sometimes, the struggle and the confusion can lead to new discoveries. As students are learning new ways of doing things, they are developing important problem-solving and coping skills that will last a lifetime. Instead of fighting the confusion, lean into it.

Here’s Why Kindness Toward Disabled People Is Complicated [Repost]

“Like the center of a black hole, my body attracts every good deed from across the universe to the foot of my wheelchair. I move through parking lots and malls, farmers’ markets and airports, bookstores and buffets, and people scramble to my aid.”

“On this particular day, I’m assembling my chair when I hear a man yelling at me from across the parking lot. It’s safe to assume he wants to help me, and I have decades of data to attest that he will not be able to make this routine even the slightest bit easier for me.”

“Did you want anyone’s help? Was it even helpful? What needs did you have that remained ignored or misunderstood? What could be put into place so that you aren’t forced to be dependent on the kindness of a stranger who may or may not be there next time?”

“But who says no to a blessing? I don’t want to be the scowling woman in a wheelchair, raining on the parade of a smiling, optimistic do-gooder.”

“And if you insist on using ‘kindness’ to describe this kind of inclusion, recognize that including disabled people is a kindness for all of us. Because listening to voices that are typically silenced brings to the table nuance, endurance, creativity, beauty, innovation and power.”

On this week’s blog post, Rebekah Taussig shares experiences that are all too familiar to those of us with visible disabilities. The watchful stranger in the parking lot, the feel-good article about the kind stranger feeding the disabled person, the person insisting on “helping” us do something we didn’t really want to do anyway, and the stranger who wants to pray for us-all these scenarios share an outward appearance of kindness without meaningfully challenging the real barriers of inaccessibility. Dr. Taussig also highlights the odd tension the disabled person feels, of needing to accept the misplaced kindness or else appear unkind in return. Her closing message is one that should be familiar by now to Disability Wisdom readers: helping and allyship should be about the recipient’s needs, not the giver’s.

Here’s Why Kindness Toward Disabled People Is Complicated

What Is Disability Spread?

When I was in the sixth grade, our science class took us on a field trip to the Imax theater. I haven’t the slightest idea what the film was about, I think about some ocean creatures. What I do remember, clear as day, was walking into the theater with my group of girlfriends, talking and laughing. As we approached a flight of stairs to go to the second floor, I was quite rudely stopped and separated from my friends. An adult ordered me to get into the elevator, with just one random boy from another class. I asked the boy why he was in the elevator, trying to figure out what the heck just happened? He said he had broken his foot recently and was on crutches.

For those of you who are new to the blog, I am totally blind and use a white cane to walk. But I have no trouble climbing stairs. Yet many of my blind peers and I are regularly presumed to have difficulty with physical tasks like climbing stairs, lifting heavy objects, dressing ourselves, or even being out in the rain without a raincoat.

The disability psychologist Beatrice Wright coined the term “disability spread” for this phenomenon. It’s the mistaken belief that people with one impairment have difficulty in other areas of life as well. It might look like presuming that a blind person can’t climb stairs, or presuming that a Deaf person or someone with a speech impairment is lacking intelligence. It might appear as someone speaking to an adult like a child because they are seated in a wheelchair or because they are a little person; shouting at a blind person; or asking a Deaf person if they can get a driver’s license.

It seems there are at least two reasons for disability spread to occur. First, people might over-estimate how many different areas of life are impacted by a single disability. For example, people may presume that vision is necessary to climb stairs safely, not recognizing the compensatory methods that blind people use to perform this task. Secondly, people may see one disability symbol (like a white cane or a wheelchair) and this may cue a more general disability stereotype in their minds. Unfortunately, the generic disability stereotype is often associated with images of incompetence and dependency in a general sense, not just needing support with specific activities. This may cue well-meaning folks to treat us like children or otherwise doubt our ability to monitor our own safety.

Importantly, disability spread can also work in reverse. Some people truly have multiple disabilities. Sometimes, people with multiple disabilities may be treated as if they only have one disability. Often others will focus on whichever disability is most visible or obvious, even if the person’s other, more hidden disabilitie(s) are actually more impactful.

It is also important to say that my not wanting to be assumed to have other disabilities does not in any way invalidate the worth of people who actually do have those disabilities. There is nothing wrong with having a physical or an intellectual disability. But assuming I have those other disabilities is stereotyping me without recognizing my individual strengths and limitations. And, whether I have an intellectual disability or not, I deserve to be treated with dignity and respect

So how do we avoid engaging in disability spread, or its opposite? Well, the incident that happened to me in sixth grade had an easy solution. They could have simply asked me if I had any trouble with stairs, and after I said no, let me go upstairs with my friends. If they were really worried about liability and the overconfidence of an 11-year-old child, my teacher could have even called my parents that morning to double-check. Either action would have avoided the embarrassment and indignity of being segregated for an accommodation that I did not need.

The bottom line is that we are the experts on our own support needs. If you aren’t sure what our support needs are, ask us and listen to what we tell you. That way you can never get it wrong.