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Past, Present, and Future, The coming generation

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 voices, We will overcome

#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, disability etiquette

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.

Psychology, research, Solidarity

Reaping the Benefits of Gratitude

As a justice-conscious American, I am troubled by the historical roots of the Thanksgiving holiday as a celebration of conquest. But I enjoy some of the modern traditions that have become associated with the holiday: a few days off from work or school, a chance to spend time with loved ones, good food, and the deliberate practice of “thanksgiving”; taking time to think of things we appreciate in our lives.

As disabled people, gratitude can sometimes be hard to find. We may encounter frequent circumstances that make us sad, angry, frustrated, fearful, ashamed, or worried. Some of us may be overwhelmed by physical discomfort or emotional trauma. We may face food or housing insecurity, or feel disconnected from our communities. Amid such struggles, it may be difficult to bring to mind the positives in our lives.

Yet research indicates that making the effort to identify sources of gratitude has a myriad of physical and emotional benefits. In a classic study (links to PDF) college students who were randomly assigned to keep daily or weekly “gratitude journals” reported more positive moods, felt happier about how their lives were going, were more likely to report helping others, and were more optimistic about the future compared with others who wrote about neutral topics. In a follow-up study, the researchers randomly assigned some individuals with neuromuscular disease to write daily gratitude journals. These individuals were not only happier than those who were not assigned to keep gratitude journals, but they also reported getting more sleep each night and feeling more connected to others. In another study,people with chronic pain who reported feeling more gratitude in their everyday lives experienced less symptoms of depression and anxiety, and also reported better sleep than those with less frequent experiences of gratitude.

Negative thoughts and feelings are a bit like gum on the bottom of your shoe; once it’s there, it sticks, and is difficult to scrape away. But gratitude can disrupt negative mind cycles, and if practiced enough, can become a cycle of its own. In fact, some research suggeststhat gratitude can trigger the release of “feel-good” brain chemicals like dopamine and serotonin, which can motivate us to keep looking out for things that make us grateful.

Before I close with some suggestions to start your gratitude journal, I want to address two caveats when we talk about gratitude in the disability community. First, disabled people are often expected to be grateful by others. For example, “You should be grateful when that man almost carried you across the street; he was just trying to help.” Or “don’t ask for that accommodation; you should be grateful to have a job here at all.” Coerced gratefulness doesn’t work; in order to confer benefits, gratitude needs to be natural and organic. Nor is gratefulness a reason to accept the status quo. We can be genuinely grateful for the things we do have, while at the same time, expecting and pushing for the things we deserve.

Second, the shadow side of being grateful for what we have is pitying others for not having those things. Disabled people often find ourselves unintended objects of nondisabled people’s gratitude. “That poor man in the wheelchair! I’m so grateful that I can walk,” someone might think, or even say aloud. “Thank God I’m not blind like you.” And so on. When we exercise gratitude, it can be tempting to compare ourselves to others who lack things we have as a means of boosting our own sense of gratefulness. But this may weaken the benefits. In fact, in one of the studies described earlier, some college students were asked to write about things they had that others don’t have, instead of writing about things they were grateful for. The students who compared themselves to others did not report the same boost in happiness and optimism as the students who wrote about sources of gratitude. It is possible to fully experience appreciation for what we have in the present, without comparing ourselves to anyone else. We can be grateful, while also humbling ourselves with an awareness of our privilege and a commitment to share what we do have with others whenever we can.

When you’re getting started with a gratitude list, sometimes the simplest things can be most compelling. For example, you might be grateful for:

  • A special connection with a significant other, family member, or friend, even just one person;
  • Access to conveniences like electricity and running water;
  • The beauties of nature, the warmth of the sun, a rainbow or a sunset, the birds chirping, fresh air or ocean smells;
  • A connection with God or faith;
  • A period of good physical or mental health, which could be as long as a decade, or as short as an hour;
  • A special mentor from childhood, perhaps just one person, perhaps many;
  • An experience where you were included and valued, or an experience of access intimacy;
  • Try converting a negative situation into a gratitude exercise. For example, if you are annoyed or stressed by a situation at work, try to focus on your gratitude for having a job, and for all the things (education, mentors, resources) that helped you become employed.

This November, I am grateful for the opportunity to improve public understandings of disability through Disability Wisdom Consulting. I am grateful to everyone who has helped make Disability Wisdom a possibility. Most of all, I am deeply grateful to be part of an international disability community, to know that I am not alone in my disability experience, and to have the chance to empower others. Happy Thanksgiving to all.

disability etiquette

Access Intimacy: The Missing Link

November is a time when we focus on gratitude and appreciating the good things in our lives. I’m going to write a longer post about gratitude next week, when things are (hopefully) not piled as high on my virtual desk.

This week, I want to share a blog post from Mia Mingus, a writer, educator and community organizer who identifies as as a queer physically disabled woman of color. Mia reflects on the rare experience of “access intimacy.” Simply put, access intimacy is “that elusive, hard to describe feeling when someone else ‘gets’ your access needs.” While it can be confused with other forms of intimacy, it is distinct, and can arise between strangers. When we live in a world where our access needs are often ignored, or met only after a struggle, finding someone who provides appropriate access in an organic way can be a true treasure. I try to intentionally feel gratitude for those moments.
Access Intimacy: The Missing Link