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“I flap my hands when I am happy. I flap them when I am content. I flap them a lot when I get excited about something. I have as many different ways of flapping and twisting and ruffling and fluttering my hands as I have emotions and emotional combinations that wash over and through me. My hands are like barometers of my emotional climate.”-Maxfield Sparrow

“I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though — that came naturally.”-Zoe

“A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It’s silent, until: ‘Quiet hands!’-Julia Bascom

“I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.”-Zoe

[Excerpts from essays published on

Thinking Person’s Guide to Autism]

They go by many names: “stims,” “stereotypies,” “self-stimulatory behaviors,” “mannerisms” and in blind circles, “blindisms.” These labels are applied to a huge range of habitual movements: body rocking, head rocking or head shaking, eye pressing, hand flicking or flapping, spinning or bouncing in place, playing with items, etc. The only thing all these movements have in common, in order to get labeled “stims,” is that they are performed by a disabled person.

I am blind. I used to love banging the back of my head on things. I could spin in place for hours without getting dizzy. I loved anyone who would let me bounce on their bed. I used to flap my hands. I still rock or shake my head sometimes when I get excited about something. Except for the childhood spinning and jumping, these are movements that happen without my awareness.

I used to feel ashamed of my stims. I was told that if I stimmed in public, people would think I “wasn’t all there.” At the time, I tried to distance myself from people with intellectual disabilities, so the threat of being seen as one motivated me to hide my stims. I was compared to other blind people who didn’t stim. I would read books saying that the only reason blind people stim is because their parents or caregivers didn’t work hard enough to break them of it.

But then, a while ago, I realized that nondisabled people stim, too.

Some people tap their pencil in class. Others fidget with their bracelets or squeeze stress balls. Still others bite their nails, or crack their knuckles.

Autistic kids grow up being told to have “quiet hands.” Yet when sighted neurotypicals speak verbally, they sometimes “talk with their hands” too.  They make what seem, to me, like purposeless hand gestures. Nobody tells them to have “quiet hands” or “quiet body.”

I began to wonder why me rocking in the middle of a passionate conversation was that much different from my sighted friend gesticulating.

Nondisabled toddlers run and climb and jump all over the place. They have to be supervised so they don’t fall down the stairs or break their leg. But when a blind or autistic toddler spins in place, completely safe and harmless to others, they are pathologized. I saw a Facebook post recently from a parent whose son’s teacher was “freaking out” about his habitual spinning. The child’s occupational therapist even warned that the spinning would interfere with his sleep. Obviously, she had never experienced the joy and peace of spinning.

We have a cultural double standard regarding the kinds of movement we accept from disabled vs. nondisabled members of our society. And, I believe that our collective antipathy toward stimming is just one more way we tend to consider disabled people as “other.” By pathologizing the movements of disabled people, we forget that these movements arise from the same human needs that drive the movement behavior of nondisabled people. Due to neurological or sensory differences, our stims might look different on the outside.

The term “stim” implies that a movement is done for the purpose of generating sensory stimulation. Sometimes this is true. But, stims can serve many other purposes as well, as I have learned from autistic people. They can generate needed sensory input, but they can also help lessen unwanted sensory stimulation. Stims can serve as full-body emotional expressions. They can release pent-up motor energy that might not be released through more typical outlets. It seems clear to me that humans are wired for movement, and movement serves many other purposes beyond just traveling from one place to another-especially early in life. If children weren’t wired to move, we would see kids only walking if they needed to get somewhere, and only running if they needed to get somewhere fast.

I know that many parents are genuinely unsure how to handle their children’s stims. They want to respect their children, but they are also aware of the negative ways our society reacts to behavior that stands out from the norm. Many disabled people, too, struggle with more general questions of how and when to disclose their disability. Suppressing stims is one way of “passing” as nondisabled, which bears both benefits and costs for the person doing it.

I try to take a dual approach to these kinds of issues. I push to remove social barriers and make the world accessible to everyone. But at the same time, I am a pragmatist, and I know these things won’t happen overnight. That’s why, if a blind student is having trouble accessing an online course for example, I will advise them to make a complaint to the course developer, and then hire a reader to help them while they’re waiting for a resolution. I generally take a similar approach to matters of stimming and passing.

I want to see a greater acceptance of stimming included as part of our broader inclusion and “disability awareness” campaigns. I think much of our aversion to stimming is unfortunately hard-wired in our evolution. We feel uncomfortable with people who move differently, for much the same reason as our discomfort with people who have facial differences, or who vocalize instead of speaking. All of these differences could point to disease or threat. Our human ancestors lived longer if they avoided people who looked, acted, or spoke differently. This is hard-wired, but we know that disability education and contact works to undo these patterns. I would like to see books and videos about stims and how natural they are for neurodivergent people. I also want to see an end to teaching methods that try to undo stims through shaming or punishment. Imagine if all the effort spent on breaking us of our stims could instead be directed toward helping nondisableds get comfortable with the full spectrum of human movement.

But, these shifts will take time. I do think it is appropriate for disabled children to learn about the social costs of stimming. This needn’t be over-emphasized, though. The social costs of looking disabled are pretty obvious to most disabled children, even blind children who are supposedly so unaware of our social environment. We can pick up on other people’s avoidance or judgment pretty quickly. What we need, then, is guidance on alternative ways to stim that are less socially costly. For example, children can be offered trampolines, swings, or enrolled in dance classes. Efforts can be made to adapt typical exercise activities so they are accessible. Fidget objects can be used discreetly under the table. Blind children, who may not know how sighted people express themselves nonverbally in conversation, can take acting classes and learn about gesturing and body language. Individuals who actively want to stop a certain stim can use a reminder bracelet, or ask a trusted loved one to give them discreet feedback so they can build awareness and substitute an alternate stim. We can practice a “quiet hands” pose reserved for public presentations and first dates. Just know if the date goes well, or if it goes horribly, there might be a lot of stimming at home that night.

I think the coolest thing, though, would be if disabled people could have role models who stim. I will close with this quote:

“Stimming in front of my students to relieve tension lets them know they too are safe to do so in the classroom. Disabled students need disabled professors and a curriculum in which they can see themselves reflected.” [From https://m.facebook.com/witchbrain/?refid=52&__tn__=C-R

The Americans with Disabilities Act (ADA) was signed into law 29 years ago today. At the time of ADA’s passage, I was a month away from starting kindergarten. I was disabled, and had not yet experienced integrated schooling, as I had attended a preschool for blind children. But, I did not yet know what a disability was or that I had one.

My right to a free, appropriate public education had already been guaranteed prior to the ADA. But the ADA protected my right to accommodation in employment and in all nonreligious settings serving the public. Because of the ADA, I can walk into a doctor’s office, or a grocery store, and ask for reading assistance without fear of being kicked out because “we’re too busy.” Employers can’t ask about my disability, or deny needed accommodations unless they would presentan “undue hardship” to the business. But perhaps the most significant benefit of the ADA has come to people with physical disabilities whose very literal access to public spaces depends on their design. The ADA requires all new buildings serving the public to be constructed in a manner allowing full access for wheelchair users and others with physical disabilities.

Disabled people from the generation before mine remember living in pre-ADA America. They fought for the basic civil rights protections afforded by the ADA. The ADA has allowed access to community life for millions of Americans.

But, the ADA has been far from a panacea. A significant group of blind Americans warned that the ADA could increase custodial treatment and over-accommodation of disabled people. To address this concern, a provision was passed within the ADA ensuring that individuals can refuse unnecessary accommodations.

More troubling, though, employment rates for Americans with disabilities have not improved appreciably since the ADA passed. There are a variety of reasons for this. One thing that definitely happens is that employers may over-estimate the cost or the burden of hiring disabled workers. In the old days, employers would openly turn away disabled applicants. Now, post-ADA, employers may claim other reasons for not hiring disabled workers, or even outright lie and say a position has been filled, while continuing to screen nondisabled applicants. A research participant of mine once shared that he came to a job interview as scheduled, was told that the position had already been filled, then overheard another person being called back for an interview while he was waiting for his ride home. While such blatant lies may not be the norm, in today’s competitive job market, it is easy for openly disabled applicants to be passed up without any stated reason and no clear proof that discrimination was at play.

Furthermore, the ADA in isolation cannot fix technology-related barriers in the workplace. In 1998, legislation was passed requiring federal agencies to make their websites and information technology accessible. But, there has been a dearth of specific regulations governing how the ADA applies to the Internet and other 21^st-century media. Workplace technology is constantly evolving, and even with laws requiring access, it takes time for workplaces to properly identify and remove technology-related access barriers every time there is an upgrade, or a new release. Consequently, we see disabled workers laid off or demoted when the call center where they work starts using a new call management system, for example.

The ADA was pivotal because it enacts a spirit of inclusion and an awareness that disabled Americans deserve civil rights protections. But, inclusive attitudes cannot be legislated. As long as people continue to misunderstand, fear, hate, pity, or envy people with disabilities, discrimination will still occur. Laws like the ADA may just encourage people to sweep the discrimination under the carpet instead of letting it lie in plain view. And when discrimination is hidden or swept under the rug, it becomes even harder to manage. It’s a little like that stinky old broccoli I accidentally left in my fridge for a month, and finally found on the very back of the shelf. Stunk up my whole kitchen until I could find and dispose of it.

We need laws like the ADA to guide organizations toward inclusion. But, what will really enact long-term change is the widespread cultural belief that disabled people are valued members of our communities. In my work, I am encouraged to meet organizations that are taking strides toward full inclusion and access because they want to, not just because they are being forced to do so by the hand of the law. Real revolution requires all of us to identify and confront our own misunderstandings, fears, and other involuntary reactions we have around someone whose abilities differ from our own. Once we identify these internal roadblocks, we can work to correct them and to build systems free of discrimination. As more disabled people are being integrated in schools, workplaces, housing, and civic life, I hope to see a more unified valuing of inclusion nationwide and worldwide.

“Although ASL and Deaf characters have become increasingly common in theatre, TV and film, it is rare for Deaf talent to be fully included in the development of shows outside of Deaf-run theatre companies. Kori Rushton, Producing Artistic Director at IRT, set out to change that by having a Deaf and hearing person collaborate on each major aspect of the production. Deaf and hearing directors worked together to ensure the production was accessible and engaging for audiences of all abilities, while the Director of Artistic Sign Language sought to convey the power of the lyrics and rhythm of the music in sign and movement.”

Here’s an article about a new inclusive musical theater production. The plot is loosely based on that of Cinderella, but features a deaf protagonist discovering the freedom of sign language, and fighting against oppression. Read what the producers, directors, and actors in this show have discovered about inclusion through this unique project.

Reader’s note: On clicking the link, you may be prompted to sign in; however, signing in is unnecessary. Simply click “continue to site” at the bottom of the page to view the article.

Deaf, Hearing Theater Professionals Collaborate in Musical ‘Stepchild’

“The best thing non-disabled people can do when inventing or innovating products for disabled folks is to actively seek out and include disabled people at every step of the design and testing process. If they don’t do that, I give them no credibility whatsoever, because clearly they see their job as to fix a problem on their expertise alone, however flawed or lacking their expertise may be.”

I’m in a couple of Facebook groups where someone has been promoting a new “wearable” cane for blind toddlers. Instead of being handheld like the conventional white cane, the device straps onto a child’s waist and blocks the child from running into obstacles.

At first, the concept seemed a bit intriguing. After all, there are times when both blind children and adults could appreciate a hands-free cane alternative.

Unfortunately, though, the rhetoric that the device inventor uses has become a major turnoff for many blind adults, parents of blind children, and cane instructors-the markets that she most needs to impress. Specifically, the device inventor defends her creation by painting a bleak picture of early childhood for blind children, claiming not only that all blind children experience developmental delays, but that no child can use a conventional cane “properly” until the age of 6-despite ample evidence to the contrary. She deflects practical questions about the safety of her device or its applicability in different environments. She uses buzzwords that are not part of the broader blindness vernacular, like “mobility visually impaired.” In short, she seems wholly out of touch with her market.

This may be a somewhat extreme example, but there’s a broader pattern here. Designers, engineers, and students are always coming out with new ideas to make our lives better. But, not all of these ideas are ultimately good ones. Disabled people have certain criteria we use to evaluate new technology concepts and to decide whether or not we want to get on-board as potential customers, testers, or co-designers.

So what distinguishes a technology team that wins our trust from one that doesn’t? I asked the folks on the Disability Wisdom Discussion Group for their ideas. Here are some common themes that emerged:

*Disabled input: The single biggest theme mentioned was that “good” tech teams involve disabled people in the entire design process “from brainstorming on up.” Centering the lived experiences of disabled people can help avoid some of the pitfalls mentioned below. And, involving members of the target user market is the single best way to ensure that there will actually be a real market for the finished product. Tech teams can earn our trust by inviting us into positions of influence and compensating us appropriately for our expertise. By contrast, tech teams that wait to consult us until they need beta testers tend to arouse more suspicion.

*Product fills a real need: We often hear about tech concepts and think, “That already exists” or “That’s a fix for something that isn’t broken.” Sometimes low-tech, mainstream solutions already solve the problem that a new high-tech gadget would solve at ten times the cost. Or, the “problem” might not be a problem to begin with. Good innovations are those that build upon existing solutions and strategies disabled people already use, augmenting their effectiveness or filling gaps that current technologies do not yet fill.

*Language and attitudes: Group members pointed out that we are more likely to trust a technology team who uses respectful, empowering language about disabled people. In contrast, “If the company uses really infantilizing, patronizing, or super-self-congratulatory language to describe their product as the savior of disabled people, I’m immediately turned off.”

*Responsiveness to feedback: Tech teams can earn trust by actively soliciting user feedback and responding promptly to concerns raised. On the other hand, those who “sidestep safety questions and other inquiries like a career politician” will quickly raise red flags.

*Affordability: Many disabled people live near or below the poverty line. Many “niche” assistive technologies are simply priced too high for the average disabled consumer to afford. When a product is priced so high that consumers can only afford it with the assistance of a government agency, the reach of that technology is substantially reduced. On the other hand, technologies that are marketed to the mainstream, not just people with disabilities, can often be made more affordable to the disabled market. For example, the built-in assistive technology on Apple devices is often more affordable than a Windows device running a separate, specialized screen reader or screen magnification.

*Exclusivity vs. inclusivity: Innovations that are part of the mainstream may be more affordable than specialized “exclusive” technology for disabled people, and it also is more attractive by embodying a spirit of inclusion rather than exclusion. For example, instead of designing “special” social networking apps for disabled people, a more acceptable option is to make mainstream social networking apps accessible for all.

A few months ago, I shared a Lyft ride with a blind friend. She was dropped off first. During the ride, we chatted about our jobs, homes, and other common topics of discussion among 30-something professionals.

Our driver was quiet during our chat, but after my friend was dropped off, he asked me, “So…What happened to you and your friend?”

I calmly explained that nothing happened to us, that we are both blind, and that I didn’t know her medical history but in my own case my blindness is genetic. I then went back to my MP3 player.

A few minutes later he asked me if I had any siblings. I replied that I have an older sister. The next question: “Is she…OK?”

A bit taken aback, I replied that both of us are “OK” but that she is sighted.

One of the interesting consequences of ridesharing for disabled people is that we often become targets of seemingly-innocent questions like these while in the car with strangers. But, this issue was prevalent far before Lyft and Uber were a thing. Many of us field curious questions from strangers of all ages, whether on the street, in class, while out with our children, or in a multitude of other settings.

Some of the most common questions involve the cause, duration, or severity of our disabilities. Others may ask us how we perform specific tasks or about the assistive technology we use. Occasionally, questions regard “taboo” topics like sex or toileting. (I have not yet been asked about these things, but some of my friends and colleagues have).

I consider myself an open person. There is really very little I keep private, and as someone with a curious streak myself, I usually indulge these questions. But, as a member of the larger disability community, I need to explain why such questions can, at times, cause harm. There are a few reasons:

*In my own case, the cause of my disability was boring-it was just a random genetic glitch and there was no trauma involved. But for others, their disability may have been caused by a traumatic event, or disability onset could have been traumatizing in itself. Even the most innocent questions can unintentionally re-traumatize.

*When someone only wants to talk about my disability, it can feel a bit dehumanizing or like I am nothing more than my disability. In the example above, my Lyft driver could have asked about my job, my house or any of the other things that came up in my conversation with my friend, but instead, he just focused on my disability. When strangers want to focus only on my disability, it makes me wonder if they think I can add any other value to a relationship.

*As a cultural norm, certain topics are generally considered “intimate” topics only discussed between people who know one another. At least in western cultures, medical details are usually not discussed at length between strangers. Asking intimate questions so early in a relationship can suggest an inappropriate level of intimacy in much the same way as an unsolicited physical contact.

*Some questions can be worded in an ableist way, e.g., “Is your sister OK?” implies that being blind is not an “OK” way of being.

*Sometimes the disabled person is too busy, distracted or tired to answer questions. For example, when I’m trying to get a research article finished ahead of a deadline, that’s not the time to ask me how my screen reader works or to ask complicated questions about how severe my blindness is or why I travel with a cane instead of a guide dog. Same if I’m running after a bus, or half-asleep in the back of your car after a long day.

So, if you are genuinely curious and want to learn more about disabilities, what should you do? Consider the following checklist as a guide if you want to ask questions of a disabled stranger in your presence:

*Would I feel uncomfortable asking this type of question of a stranger without disabilities? For instance, would I feel uncomfortable asking a stranger how they got their scar or their bald head, or about their sex life? If it feels like a “personal question,” it probably is.

*Is this a question I can ask Google instead, or search the disability blogosphere?

*Does the disabled person appear rushed, preoccupied, or tired?

*Is there something else I could bring up first, to build rapport and get to know the person before broaching the disability topic?

If the answer to any of these questions is “yes” then consider holding off on discussions of disability until you have built a closer relationship in which some questions become part of mutual self-disclosure. In the meantime, you can learn a lot and satisfy curiosity by simply getting to know us as people. The best way to learn? Chat with us, ask us to dance, hire us, work with us, play with us. If your kids are the curious ones, introduce them to play with disabled kids, or with the kids of disabled parents. And check out this post on answering kids’ questions about disability!