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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.

Advice for People with Disabilities Running for Office [Guest Post]

Woman in a wheelchair uses a laptop computer at a desk.

This post comes from Ed Carter. Ed has been living on wheels for most of his life. A retired financial planner, he offers financial guidance for people with disabilities and their families. However, for this post he wanted to share some advice for disabled folks who are planning to run for public office or other leadership roles. Much of this advice is also good for anyone starting a new venture, such as running a business. Check out his website at:

www.ablefutures.org

Here is what he says

Advice for How to Run for Office
for People with Disabilities

When people decide to run for political office, many don’t realize just how much work is involved in the process. Every step of the way involves careful planning, and if you’re not ready to embrace the challenge, you’ll find yourself struggling to keep your head above water.

Several years ago, a friend of mine with a hearing impairment decided to run for her homeowners association board. While this wasn’t a high-profile political office by any stretch of the imagination, it did require her to get involved with the local community and develop her portfolio that explained why she was such a good fit. And due to her hearing impairment, she needed to work that much harder. I helped her out whenever I could, including talking to neighbors and developing her pitch to the board. Although she ultimately decided not to pursue a spot on her HOA board, the experience helped boost her overall self-confidence.

As you can imagine, running a successful election campaign — even if it’s for a spot on the town council or neighborhood association — is a big undertaking, and regardless of your background, you’ll need a strong team of individuals to help you get elected. For people with disabilities, your team can help navigate any access challenges that may arise.

The Essentials

When you’ve decided you want to run for office, there are some key steps you’ll need to take before you announce to the world that you’re a candidate.

Get organized and build your website and social media profiles before you tell the world about your campaign. You’ll want a slick website that clearly states your campaign platform, sponsorship options, and personal history. Although my friend didn’t create a webpage for her homeowners association campaign, she did keep her social media profiles — including taking great photos and posting them on Instagram — to spread the word.

If you don’t have experience building a website or have a disability that may prevent you from doing it yourself, consider hiring a professional website designer who can do it for you. One of the best places to find freelance web designers is through various online job boards, where you can find dozens of designers available for hire.

Assemble your list of potential supporters by reaching out to friends, families, and coworkers, and sort through your stacks of business cards to collect names and email addresses. Announcing your candidacy will be a big day for your campaign, and you want to ensure you have a solid list of potential financial sponsors from the get-go.

Your Dream Team

It’s impossible to win an election without a strong team of people around you, so consider who you may need to help you with the campaign. This, of course, will look different depending on the office you’re running for. The more high-profile office you pursue, the more people you’ll need in your corner to help you build a pathway to success. My friend obviously didn’t need a team of professionals to help her, but she did enlist the help of friends and family along the way, especially when she needed to verbally communicate her ideas to others.

Every major political campaign requires a financial director who can help set fundraising goals and manage the day-to-day costs of the campaign. This person should also be setting up fundraising events and managing multiple platforms for sponsorship, whether it’s through crowdfunding websites or social media fundraising campaigns.

The campaign manager will be the brains of your operation, taking both a big-picture approach to handling the campaign agenda while also handling daily challenges and needs. This person should also work to help you navigate the campaign as a person with a disability, such as ensuring that event venues and campaign documents are accessible for you.

Consider also hiring a media and communications manager who can take care of all press events, media requests, and daily content creation for your campaign. This person should be able to help develop campaign literature and ideally help you write speeches for events. The communications manager will also serve as a spokesperson for the campaign, so ensure they are appropriate for drafting and delivering statements on your behalf.

Know Your Electorate

One key element of a successful campaign is being knowledgeable about your electorate. Before and during your campaign, connect with your community in every possible way, whether it’s through street cleanups or open houses where you can learn about issues that face voters.

As a person with disabilities representing a minority group of voters, you’ll have the unique ability to promote voter registration for others who have disabilities. According to a report from the Pew Research Center, voter registration has been historically difficult for disabled people. Your role as a candidate with a disability can highlight and help dismantle those barriers to voter registration, at the same time gaining supporters within the disabled community.

Research voter history in your area, and be sure to know exactly how many votes you’ll need to win your campaign. This information will help form your campaign plan, hone in on strategies that will help you connect with potential voters, and set goals for pledges of support.

Whether you’re running for a homeowners association board or striving for something bigger, the same rules apply: You need to prepare a campaign, gather a team, and start putting your message out there. Although you may have a disability that limits you in one way or another, you still have just as much chance of reaching your goals as anyone else!

As you begin the process of launching your campaign, be sure you have a strong team of supporters and workers around you to help. Build your online presence with the help of freelance web designers, and be sure you get out into the community and meet voters. Your campaign is bound to help raise the visibility of people with disabilities in your community, which will help you highlight issues and gain support — regardless of the office you’re seeking!

A Podcast on Disability Rights, Leadership, and the ADA [Repost]

“And I never learned about the ADA, and I never learned about the disability rights movement. I only learned and got involved—until my senior year in college, when I had a blind professor, and he really kind of helped me, and kind of introduced me to the disability rights world. But, that’s ridiculous. Like, I—you know, it’s ridiculous that you have to be college-educated to learn about this information and it’s, you know—as a disability rights movement, as people that are a part of, kind of, creating change, I feel like that’s a big failure that we have done.”

Check out this bonus episode of the Disability Visibility Podcast and an interview with my friend and colleague, Conchita Hernandez Legorreta! Maria (Conchita) Hernandez Legorreta was born in Mexico and grew up in California. She advocates for the rights of blind children and their parents in the public-school setting in the United States and abroad through a lens of intersectionality focusing on social justice. Conchita received her Bachelor’s degree from Saint Mary’s College of California, majoring in International Studies, Spanish, and History. She then went on to Louisiana Tech University where she received her Master’s in Teaching with a focus on teaching blind students. As well, Conchita earned a master’s certificate in working with Deaf-Blind students from Northern Illinois University. She is currently a Doctoral student at George Washington University pursuing a degree in Special Education. On this podcast, Conchita talks about disability rights, leadership, and intersectionality.

Click here for the podcast and transcript