Blog

Deconstructing Disability from the Cockpit

Photo of me in the cockpit of a 1946 trainer airplane
My husband Jason and I spend Christmas week with his parents in Cincinnati. Jason’s dad is taking flying lessons, and as a holiday gift, he booked time for Jason and me to each take a guided spin on a 1946 two-seater “trainer” plane (an Aeronca Champ). The learner, who sits in the front, shares the controls with an instructor behind them. When it was my turn, my instructor ascended us about a thousand feet above ground, and once we were at a safe altitude, I was able to play with the controls, and could make turns with minimal guidance. I also got to tactually observe how the controls were used when my instructor landed the plane.

As a blind person, I’m legally barred from operating any motor vehicle on my own. So these rare moments at the controls of a motor vehicle (even in a gaming context) have a kind of forbidden-fruit allure for me. And, as we were up in the sky, I reflected on the popular idea that driving a car and flying a plane are considered beyond the outer limits of a blind person’s capability. This made me reflect on the dynamic, constructed nature of the disability concept.

In the United States, a disability is legally defined as a physical or mental impairment that “substantially limits one or more major life activities; a record of having such impairment; or being regarded as having such impairment.” Some of the “major life activities” included under this definition are seeing, hearing, walking, standing, lifting, speaking, learning, or concentrating. Read more about the legal definition here

This definition has always bothered me, and seems inadequate. Who decided that seeing, hearing, walking and speaking are “major life activities?” And how much ableism is wrapped up in that classification?

I consider actions like seeing, hearing, walking, and speaking to be means rather than ends. They are methods of accomplishing higher-order human tasks that can be very effective, but are not essential. Sometimes alternative methods-using technology, creativity, or interdependence-can get the job done just as well. Other times, alternative methods work but have limitations, and there are some cases when alternative methods haven’t yet been dreamed up. Furthermore, each person values some life activities more than others. So, perhaps true disability occurs when a person is blocked from achieving personally important goals (or universal goals, like obtaining food and shelter) because of unmitigated barriers related to their impairment.

I spent much of my childhood engrossed in brailled novels. Today, I spend most of my waking hours with a computer on my lap and an earbud in one ear. Both reading and computer use were once completely impossible for blind people. When Louis Braille (the inventor of braille, whom I will write about next week) was a boy growing up in 19th-century France, he was told that blind children couldn’t read and write, and that was just the fact of the time. Not too long ago, I would have been told that a career working with data was impossible for me. A simple piece of text-to-speech technology means I can pick up a computer without a second thought. In theory, then, there may come a day when a blind 16-year-old happily drives out of the DMV parking lot with the same excitement as their peers. The realm of possibility evolves as innovation reveals the flexibility of human capability.

Disability is a spectrum, not a dichotomy. There are some life activities that may be completely unaffected by a person’s impairment. Others may be affected to a small or large extent. Their ease of completion may depend on the environment; for example, navigating in a power wheelchair on flat terrain may be as or moore efficient than walking, but navigating a flight of stairs, a man-made barrier, becomes a major challenge. Some tasks may be impossible for a person to complete because of their impairment. Sometimes a task is technically possible, but it may cause the person pain or discomfort if done too often. Some people can perform a task on one day, but not on another day when symptoms of their condition are flaring up. Although the dichotomous meaning of disability may be more manageable from a legal perspective, it fails to acknowledge the complexity of disability and the range of experiences between people, or within the same person over time.

There is one more thing worth mentioning. The legal disability definition focuses on what one person can or cannot do in isolation. But through interdependence, we all can do a lot more. During my guided flight, I relied heavily on my instructor’s expertise as well as his sight to navigate and, eventually, find the way back to the runway. Perhaps if I took enough lessons, I wouldn’t need to rely on his expertise anymore. Perhaps I could become a pilot or a captain, and employ an assistant who could give me the visual information needed for the most complicated maneuvers. Most disabled people can achieve a greater range of activities with strategic assistance from readers, sign language interpreters, personal care assistants, or job coaches, to name a few. If our society prioritizes funding to compensate these individuals, then the arrangement becomes one that benefits both the consumer and the provider. That is why disabled activists are so worried about potential cuts to Home and Community-based Supports (HCBS) which allow disabled people to receive needed support in their communities.

So today, I still can’t drive a car or fly a plane on my own. I recognize there are technical challenges, as well as human limitations, that may not make those things a possibility for a long time yet. But I hope that as a society, we will continue to bend the boundaries of disability by thinking creatively and dreaming of a world in which all can perform the “major life activities” that matter most to them. Here’s to a bright 2018.

Advertisements

Disability Wisdom Winter 2017 Update!

As 2017 draws to a close, I’d like to share some exciting projects that I’ve been doing with Disability Wisdom Consulting. I publish a quarterly update newsletter to highlight ongoing projects and also to share some resources that might interest readers of this blog. Please feel free to share the below newsletter in your networks.

Dear friends and colleagues:
As always, thank you for supporting Disability Wisdom Consulting. As we come to the end of another year, I want to take this time to share a few updates and resources that you might find interesting. Please feel free to share broadly.

Research Highlights:
Adult Rehabilitation and Employment Survey Series:
Over the past 18 months, I’ve been honored to work with Dr. Edward Bell and Mary Ann Mendez at the Professional Development and Research Institute on Blindness (PDRIB) on a research project. We began by collecting demographic and employment data from a group of about 1,000 blind adults in the United States to look at current employment patterns and factors that were associated with employment. Results from this initial survey replicate previous findings: about one-third of the blind adults who have completed vocational rehabilitation (VR) are employed full-time, with about 20% working in self-employed or part-time positions. Many of these individuals, though employed, are still not earning enough to leave the Social Security Disability rolls. Consistent with past research, we found that having more formal education, using braille on a regular basis, and being a member of a blindness consumer organization were correlated with employment. We also found that individuals who were blind with additional disabilities reported lower employment rates and likely face additional barriers in the workplace. We will be submitting these results to the Journal of Blindness Innovation and Research (JBIR), a peer-reviewed, open-access journal dedicated to publishing scholarly discourse on blindness. Learn about the journal here.
We are continuing this project with four follow-up surveys to ask blind adults in the United States for more in-depth feedback on their experiences with employment, parenting, training and rehabilitation, and psychosocial issues. These surveys are unique in that they include both closed-ended and open-ended questions to describe trends as well as to gather more subjective input from blind individuals regarding barriers and facilitators to participation. It is also unique in that all three people on the research team are blind, and we have incorporated our lived experiences into the design of the survey questions.
The results from the employment and parenting surveys are being compiled and prepared for publication at this time, while the other two surveys are still ongoing. I will provide updates as the results from these surveys are published.

The Impact of Blindness Simulations:
Last summer, I gave a brief talk at the 2017 National Organization of Parents of Blind Children (NOPBC) conference describing my earlier research on blindness simulations. I explain the social-psychological theories underlying this work and a few anecdotes from experiments we conducted to test the impact of simulating blindness on sighted college students’ attitudes and beliefs about blindness. A transcript of my talk was recently published in the NOPBC’s quarterly magazine. Click here to read a transcript of my talk.

Training Highlights:
Tips for Making Images Accessible on Social Media:
Sharing pictures on the Web and social media is easier than ever. When you share pictures of your loved ones, or a digital flyer for your next event, be sure your blind followers aren’t left out of the fun. Check out this blog postto help take the mystery out of image descriptions.

Disability Inclusion Planning Toolkit:
I recently joined the inclusion committee for the Jewish Federation of Greater Washington. They have created an excellent inclusion toolkit that organizations can use to evaluate their inclusion and accessibility. The toolkit contains printable discussion guides, as well as interactive self-assessment tools. Although it was originally created for synagogues, it can be useful to any organization serving the public. The inclusion tool is free and available to the public. Learn more about the inclusion tool here.

Knowledge Translation Highlights:
Research in Focus Series:
I write a weekly column called Research in Focus for the National Rehabilitation Information Center (NARIC) website. Each Research in Focus article is a reader-friendly summary of a recent disability-related study. In this newsletter, I want to highlight two recent Research in Focus articles that I found particularly interesting. The first highlighted results of a coaching program to empower youth receiving “wraparound” behavioral health services. The coaching helped the youth participate more actively in their team meetings, making the meetings a more positive experience for all involved. Principles from this coaching program could be applied to youth participating in education or transition planning as well. Read about wraparound coaching here
A second Research in Focus article highlights data from young adults who are deaf-blind. This population is small and has not been well-studied. The results show that young adults whose parents expected them to find jobs were more likely to find jobs than those whose parents did not. This pattern was especially strong when the deaf-blind adult had other disabilities as well. While this isn’t a surprising finding, it shows that parents can make a real difference in their children’s futures, even (and especially) when the children have complex disabilities. Read about the power of high parental expectations here

Website and Blog Highlights
Check out some recent blog posts:
Learn about the ABCs of good disability awareness, what would really make life with disability better, the benefits of gratitude,and a letter I wrote to my teenage self.

Join the Disability Wisdom Discussion Group on Facebook!
The Disability Wisdom Discussion Group now has over a thousand members from around the world. This group is open to people with disabilities, as well as those who work in the disability field, or who have loved ones with disabilities. Click here to join the group
Until next time,

Arielle Silverman, Ph.D.
Disability Wisdom Consulting
Phone: 240-630-1154
Email: arielle@disabilitywisdom.com
Web: http://www.disabilitywisdom.com
Facebook: http://www.facebook.com/DisabilityWisdom
Twitter: @DisabilityWise

A Letter to Sixteen-year-old Me (and disabled teens everywhere)

Sent: December 15, 2017
Received: March 15, 2001

Dear me,

I know you’ve been struggling lately. Because it’s all so unfair.
It’s not fair that everyone seems to treat you either like you’re 6, or like you’re 60. You just want to be 16.
You’re tired of people assuming you can’t do anything because you’re blind.
You’re tired of people assuming you’re amazing because you do normal things and you’re blind.
You’re tired of being told that if you want to be accepted, you have to dress and look a certain way.
It’s not fair that everyone in your class can drive but you have to wait for your parents to drive you everywhere, because you can’t drive and they won’t let you ride the bus
You’re going to scream if one more person grabs you or touches you without so much as saying hello. But, if you do scream, you’ll get in trouble for being rude, because “they were just trying to help.”
You want to be proud of who you are. But everyone thinks that the way you were born is wrong.
And, deep down, you start to wonder if everyone else is right. If you should just accept your limitations and stop trying to be their equal.

You have every right to be angry. Because no, it’s not fair.
You were born into a world that isn’t built for you.
A world where some people would rather be dead than blind.
A world where disabled teens only recently started going to regular high schools, and many disabled adults can’t find jobs, affordable housing, or healthcare.
A world where you know more than most adults about your own disability, even Mom and Dad and Grandma.

You know more about your own capacities and limits than anybody else does. Don’t forget that.
You are a whole, good, competent person just the way you are.
You aren’t special, amazing or inspirational. You’re just a teenager trying to find your way in a broken world.
And you aren’t alone.
You haven’t met most of them yet. But there are millions of disabled people fighting the same battles with you.
A whole movement that started before you were born;
Older disabled people who will show you the way,
Your peers who really understand what it’s like day to day,
And the next generation, whom you’ll mentor someday.
Through the community, you’ll transform your anger into action.

In just two years, you’ll get the freedom you crave.
Living on a college campus, building your own life
And making your own mistakes.
You’ll fall down, get up again,
And with each fall you’ll gain clarity and confidence.
You’ll get to choose where to live, and eventually you’ll move somewhere where driving is optional.
You’ll get to choose friends who include you and coworkers who respect you.
You’ll still have those frustrating “blind days.” But they’ll get fewer and more fleeting.

Oh, and one more thing:
About that boy you’ve liked since you were twelve:
Well …. He’s not that in to you.
In a few months he’ll tell you he loves you like a sister. And he does.
You won’t be surprised. But it’ll still sting.
Because you want something more than a friend or a brother.
Your body’s primed for passion, just as nature intended. Some days, it’s all you can think about.
But none of the boys see you that way.

You really want a guy who’ll be your best friend, your partner, and your lover all at once.
And, it’ll happen, I swear.
You’ll have to wait a while, and this won’t be the last time you get your heart broken.
But you’ll meet someone who’ll love you just as much as you love him,
Who’ll love your entire being,
And he’ll love you with your disability, not in spite of it.
You probably don’t believe me, but I’m dead serious. I even sent a picture of your wedding rings to prove it.
(Oh and I forgot to mention-you’ll get PhDs together).
photo of our two wedding rings beside our two Ph.D. diplomas

And speaking of passion, don’t ever lose that eagerness you have, even when you get old.
Don’t lose your sense of adventure, your curiosity, your humor, or your zeal for justice.
Because even though it doesn’t feel like it now,
There’s a lot of excitement ahead of you,
And every day is a gift.

Believe me, it’ll all turn out.
Just don’t believe the prom industry:
Have no fear, these are nowhere near the best years of your life

With love,
Me

#Disabled and Unashamed: The Power of Owning Disability

This week, I want to share a post from one of my favorite bloggers, Karen Hitselberger, from Claiming Crip. Hitselberger writes about the unique journey traversed by those of us born with disabilities. From early childhood onward, we are almost always plugged into a system where we are pressured to assimilate, to do things the “nondisabled” way, and to “look like everyone else.” These pressures may be explicit, such as from physical or speech therapists, or they may come indirectly from the fact that our role models and heroes, growing up, are usually nondisabled people.

But if we are fortunate enough, we can eventually come to a place of owning our disabilities. As Hitselberger writes, “I learned accepting disability wasn’t a failure, but a victory… I am disabled and unashamed, not because it’s easy, but because it’s the only way to survive.”
Read Hitselberger’s Post

Blind in the City: Why We Don’t Touch Faces, and What We Do Instead

In the 1985 movie Mask, Diana, a blind teenage girl, falls in love with Rocky, a boy who has a craniofacial condition. At one point, Diana asks Rocky what he looks like. He jokes that he looks like the Greek god Adonis, then says, “I don’t really look like Adonis; I’ve got this real strange disease, and it makes my face look real unreal.” Diana proceeds to touch his face, and eventually says, “You look pretty good to me.”
check out this clip

Images of blind film characters touching faces to learn about a person’s appearance have become so common that some people believe blind people do this in real life, too. Others may wonder how blind people engage in social activities that, for sighted people, rely on seeing faces: identifying people, evaluating their appearance, or connecting emotionally in relationships. The truth is that I have yet to meet a blind person who habitually touches faces; this act is not only socially sanctioned, but it usually provides little useful information. Instead we use other methods to identify people, evaluate their appearance, and connect emotionally with them.

Q: Can you recognize who I am by touching my face?
A: Probably not. Human brains are wired to process faces visually. Sighted humans tend to process and remember each unique face as a whole entity, rather than as a collection of features. It is difficult to get that holistic sense of a face through touch, nor is it possible to pick up on many of the subtle details that distinguish one person’s face from another’s. Furthermore, if this is not already obvious, touching a face is a much more intimate act than just looking at one, and strikes me as a little unhygienic.

Q: So then, how do you know who’s speaking to you?
A: No, I can’t recognize you across the room by the perfume you’re wearing. But, blind people can recognize people’s voices with reasonable accuracy. Actually, sighted people can do this too, but unless they’re talking on the phone, they don’t usually have a reason to hone the skill. That said, I might not recognize your voice after one interaction; it may take a few conversations before I’ll know your voice well enough to pull it out of a crowd, and if I’m not expecting to run in to you, I may not recognize you immediately.

Q: How do you picture people in your mind? How do you know what your family and friends look like?
A: People who have once had sight can often “picture” people visually in their minds. I have never had sight, so I have no way of creating visual images. However, I do have sensory memories I associate with people. With my spouse and other close family and friends, I can “picture” them by imagining hugging them, and remembering their overall body shape. For others with whom I don’t have regular hands-on contact, I can “picture” them by hearing their voice or recalling a recent conversation. Although I, like most humans, feel a connection with loved ones through physical contact, I don’t feel deprived by not knowing all the details of their visual appearance.

Q: How do you know if someone is attractive?
A: Much of physical attractiveness is subjective, and blind people, like sighted people, will vary in their preferences. There are also some standards for physical beauty that are generally agreed-upon in a particular culture. Blind people listen to discussions of beauty, and we can be influenced, for better and for worse, by the opinions of our friends and loved ones. We may find some individuals more attractive than others based on nonvisual aspects like their voices, scents, or the feel of a hug or a handshake. Check out this video to learn more about how a few blind individuals describe attraction.

Although we certainly can be interested in another person’s physical appearance, we might not learn these details about another person until emotional or intellectual chemistry have already developed in a relationship. When I was single, I would often go on one or more dates with a man before knowing much about how he looked. I generally discovered that if I found the man to be physically attractive later, it could increase the chemistry, but like Diana, I wouldn’t necessarily be put off if he wasn’t particularly attractive, if we already had a rapport. With professional colleagues or more casual friends, I might never find out much about their appearance. So although physicality does matter to blind people, it may not have the same primacy as it does for many sighted people.

Q: Without seeing facial expressions, how do you know how another person is feeling?
A: I’ve heard that up to half of in-person communication is visual. There is also this notion that blind children have to be systematically taught the most basic aspects of social interaction because they miss so much visual information. While I don’t doubt that facial expressions and other visuals play an important role for sighted people, I don’t feel limited in my communication abilities. When I was a child, it was sometimes assumed that if I was rude to another person, it was because I couldn’t read their emotions on their face. Yet from a very early age I was attuned to vocal cues. Some of my earliest memories involve my parents’ tones of approval or disapproval, and both parents could say my name in a tone that made me freeze (and probably still could). Like most children, there were times when I chose to ignore another person’s annoyed or upset tone, because I was wrapped up in my own feelings, not because I was unaware of theirs. I can generally pick up on most emotions of others by listening to them. In fact, vocal expressions may be harder to fake than facial ones
Of course, it works better when I know the person well, and if the person chooses to be quiet (like if they are pouting), I might not get the hint as quickly as a sighted person. I also find it challenging to read the collective reactions of a quiet audience, such as while I am giving a presentation. Generally, though, I have found that blindness has little impact on the communications that matter most, such as in my marriage and my relationships with friends and family.

Q: How can I communicate well with a blind person?
A: If you don’t know the blind person well, go ahead and identify yourself by name. Also, if you are interacting in a professional capacity (such as working at a store with a blind customer) and you are wearing a professional uniform or name badge, be sure to offer that information. For example, “My name’s Jill and I’m a WalMart employee.” Don’t expect the blind person to automatically remember who you are, even if you remember them (if they’re a repeat customer, for example).

Other than that, interact with us just as you would with anyone else. Oh, and please don’t ask me to feel your face, even if you buy me a drink first.