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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.

Advocacy, Disabled voices, Psychology, research, Solidarity

I’m A Fighter… But Not How You Think

Fighters. Warriors. Brave. Courageous. Tough. Heroes. Beating the odds. Overcoming obstacles every day.

These are terms frequently ascribed to people with disabilities, sometimes by people who don’t know us at all. Some disability advocates have rejected the trope of the disabled warrior or hero as a form of inspiration porn.While I agree with this sentiment, I also think it’s interesting to dig a little deeper into the concept of the disabled fighter. Is there any grain of truth there; are we fighters?

On the surface, the thought of describing me as a “warrior” makes me laugh. After all, I was the kid who insisted that I “like everybody.” The kid reading a history book and wondering why the white colonists and the Native Americans couldn’t just sign an agreement to split land down the middle, or live together in peace on shared land. I’ve always held peacemaking as a moral priority, and even now with the wisdom of adulthood, I think of most organized warfare like an ill-conceived gamble where the house almost always wins.

Yet I was also the kid who would debate with anyone around over some arbitrary idea until they either admitted I was right, or got me in trouble. (Including a lengthy debate with my sister regarding whether or not it is really possible to “like everybody”.) I was often the first to speak up when I, or someone I cared about, was treated unfairly. And my lifelong role models are nonviolent protesters, like Martin Luther King Jr., and innovators, like Louis Braille.

The stereotype of the disabled warrior often assumes that the disabled person is fighting the disability itself, or obstacles closely related to the disability. We are seen as confronting ordinary circumstances with extraordinary courage. This depiction is incongruent with many of our experiences. Some of us feel overwhelmed by the obstacles of disability, while others of us don’t see them as obstacles at all, and thus don’t see ourselves as bravely overcoming anything. Further, for those of us who feel that our disability is integral to who we are, the disabled-warrior depiction sets up the sense that we are fighting against a part of ourselves,a kind of unhealthy internal conflict. Conversely, accepting negative events or circumstances is key in several evidence-based approaches to mental health, such as mindfulness and acceptance and commitment therapy.

The tension between “fighting” and accepting disability was highlighted when I conducted focus groups with middle-aged adults who have multiple sclerosis (MS) a few years ago. In the focus groups, we asked the participants what “bouncing back” or being resilient means to them. Many of their answers evoked images of accepting, rather than fighting, the condition. One participant described “dancing with” MS. Another said, “It’s like a tire, I’m gonna roll with [MS].” The participants described the value of accepting the condition’s presence, planning ahead, and making adjustments (such as cutting back on work, or moving to a more accessible home). However, these participants also described efforts to stay engaged in life despite limitations. One woman told us she competed in a triathlon while she was still physically able. Another said, “You know what? We only got one life. We’re only here one time. We’ve got to make the best of it, right?” The participants told us of their efforts to continue hobbies, to volunteer, to spend time with grandchildren. They made needed accommodations for their disability but refused to relinquish activities that gave their lives meaning.

In another study, people with chronic pain answered questions about their level of “pain acceptance.” This construct was defined as accepting the experience of pain while also continuing to do things in spite of pain. Participants scored higher in pain acceptance if they agreed with statements such as “I am getting on with the business of living regardless of my pain.” People who scored higher in pain acceptance showed improvements in mood and sleep quality over a three-year period, and although many of them still had significant pain three years later, they reported that the pain interfered less with their daily activities.

Healthy coping with disability involves acceptance, but acceptance does not mean surrender. We can incorporate the disability as a part of ourselves that we tolerate or sometimes even appreciate. But we also engage in an active process of doing what we enjoy, despite limitations. In the process, we fight our internalized doubts and fears. We also fight the barriers, big and small, that others might place before us. Many of us fight for an equal education, full consideration for employment, or the right to participate in fun activities. Contrary to the individualism that the disabled-warrior stereotype conjures, our most successful fighting is done collectively-hence why disabled activists have been dubbed the “hidden army.”

The popular Serenity Prayer reads, “Grant me the serenity to accept the things I cannot change, courage to change the things that I can, and wisdom to know the difference.” Perhaps this statement best illustrates the dance between accepting and fighting. As disabled people, we often can’t change the medical facts of our disabilities, so we find serenity when we learn to accept them. But for the things we can change, the social and environmental oppression, we thrive when we merge our collective courage toward challenging the status quo. And, all of us are on a continuing journey of learning “the difference,” knowing when to accept, and when to fight.

Disabled voices, research, Solidarity

On Curing Disability, Part 2

Last week, I discussed some disabled people’s thoughts on curing disabilityImportantly, the word “cure” implies completely eliminating a condition. In practice, many disabilities are incurable, and medicine is often aimed at “treating” disabling conditions. This might involve a drug or an operation to reduce symptoms, slow the progression of a disease, or implant technology to restore function. It is often assumed that some treatment is better than none at all, or that any incremental reduction of disability is worthwhile. But sometimes, incremental treatments can have unintended side effects.

I was born with an incurable eye condition called Lebers congenital amaurosis (LCA). LCA causes loss of the eye cells that transform light into electrical signals our brains interpret as vision. Although the timing and intensity of such loss varies from person to person, I have a severe form of LCA, and was born with no usable vision other than the ability to see lights and some shadows. When I was diagnosed as an infant, it was made clear to my parents that there was no viable treatment. They had no choice but to accept and move forward. I was educated as a blind child, with no question over whether I would read using braille or print, because I can’t see even the largest print letters. I never faced the temptation to hide my disability because doing so convincingly would be extremely difficult. And I was spared the discomfort, convalescence, and risks associated with medical procedures.

Many of my friends and acquaintances who are blind have milder forms of visual impairment than I do. Some can read large print or navigate outdoors without a cane or guide dog. Conventional wisdom suggests that these people are more fortunate than I am, because they can see some things. But most of my blind friends who have some usable vision tell me of problems that I never encountered. They often had to endure multiple medical attempts to save their vision that were usually less successful than hoped. I continually hear stories of kids with “low vision” being taught only visual methods for reading, writing or getting around. When these visual methods become less effective for them, nonvisual alternatives like braille aren’t offered because they are considered not “blind enough” to benefit. Consequently, the kids cannot effectively read in either print or braille. My friends have told me stories of going to elaborate lengths to conceal their disability from others. They describe feeling stuck between two worlds, or like broken sighted people, rather than whole blind people. For many of these individuals, peace and self-acceptance came only when they began to identify with their disability, disclose it to others, and employ adaptations. These stories always made me wonder whether an incremental improvement in visual acuity actually translates into a meaningful improvement in quality of life. What if my friends’ parents and doctors had simply left their eyes alone? They may have lost their remaining vision, along with the social pressure to rely on an unreliable sense. They may have gotten stronger educational supports and found self-acceptance earlier in their lives.

Similar questions plague many parents of deaf children as they contemplate whether or not to give their children cochlear implants. On one hand, a cochlear implant given early in life can give a deaf child some usable hearing during the critical window for language development. On the other hand, this child will still experience a degree of hearing impairment and may struggle with typical spoken communication. Unfortunately, some educators and school systems are reluctant to teach sign language to an implanted child, and if this happens, the child cannot communicate well either orally or manually—in parallel to the literacy problem for kids with low vision. “Low-hearing” People with cochlear implants may also have trouble being welcomed into the Deaf community and reaping the benefits of membership in such a community.

Some research bears out the paradox that more “severe” disabilities can be psychologically easier than “milder” ones. One studyfound that totally blind college students rated their self-esteem higher than college students with low vision, a finding that’s appeared in some of my own research as well. In another study,brain injury survivors with more severe injuries (i.e., experienced longer comas after injury) reported more satisfaction with their lives than survivors with milder injuries. Importantly, the survivors with more severe injuries reported forming more new, positive relationships after injury, and they also had a stronger sense of identification with being a brain injury survivor. Although these survivors may experience more severe disability than the survivors with milder injuries, they benefit from the enhanced sense of identity as well as the new social ties that they developed after the injury.

In sum, this suggests that treatments which make a disability less severe, without removing it altogether, could have unexpected negative consequences for one’s psychosocial life. On the flip side, though, a person with milder disability who does also utilize alternative techniques could experience great benefit. My friends with low vision sometimes talk about how, once they develop skill and confidence using a cane to navigate, they can use their remaining vision to enjoy the scenery around them. By using braille or speech technology for most of their reading and writing needs rather than straining their eyes, they can use their eyes to enjoy watching an action movie or playing a video game. The National Association of the Deaf encourages families who pursue implants for their children to also teach them sign. Such bilingual children can then eventually decide when speech is the best mode of communication, and when sign is more practical for them.

Furthermore, some disabilities cause physical symptoms that, one may argue, are inherently unpleasant regardless of the social environment. Such symptoms might include pain, fatigue, nausea, vertigo or breathing problems. Although people can adjust to these symptoms to a degree, medical interventions that make them less severe or less frequent may be quite desirable.

Medical science has advanced a great deal, and will continue to advance in the coming decades. Some medical interventions can substantially improve quantity and quality of life. But their benefits always need to be weighed against their risks. In the case of a permanent disability, some of the risks are dictated by how the social environment responds to a partially treated disability. Will partial treatment affect a person’s eligibility for special education or vocational support services? Will the person still have access to disability communities? Will side effects from the medical treatment have an impact on the person’s ability to participate in school, work, or social activities in the short and long terms?

These are difficult questions, and they are even more difficult for parents making decisions on behalf of their children. It is critically important that these parents can learn about all the potential impacts of medical treatment, both from medical professionals and from people who have experience with the disability in question. A positive outcome goes beyond medical success, and depends on all parties working together. Service providers, such as school authorities, have a responsibility to support the whole person instead of following a narrow definition of disability. Disability communities also have a responsibility to extend their welcome to all people regardless of their level of disability or their treatment decisions.

ableism, Advocacy, PreEmployment Transition Services, Solidarity

Why Does Disability Surprise Us?

In 32 years of living with a visible disability, I’ve learned that my condition brings up many different emotions in people: fear, pity, and awe, to name a few. But there’s another common emotional reaction to disability that, I think, supports all the others: the reaction of surprise.

Sometimes people seem surprised to find us out on the streets. They’re shocked when we disclose our disability in the course of applying for a job, for school admission, or on an online dating site. We are sometimes socialized to pre-warn such people of our disability status before meeting them face-to-face, so we don’t just “surprise them” with the news. When I talk to parents whose infants are newly diagnosed with a disability, one of the most common things they say is “This wasn’t what we expected” or “we needed to change our expectations.”

But, why is this? When statistics show that 15-20% of human beings have a disability, why is encountering someone with a disability, either a stranger or a new addition to your family, so unexpected and surprising?

I don’t know the answer to this. I suspect that, at least in part, our surprise is a consequence of our denial. In some ways, we may be either hard-wired or taught to fear becoming disabled in much the same way we fear our own death. And, if we are motivated to deny the possibility that we might become disabled someday, we may also extend that thinking to the belief that disability in others isn’t all that common. When we encounter a person with a disability, we may be motivated to see that person as an unusual oddity rather than an ordinary human being. This way of thinking makes it more difficult for us to acknowledge the fact that or our own children, employees, friends or romantic partners could be disabled.

As a consequence of this collective surprise, when a disabled person does arrive on the scene, we may end up scrambling and fumbling to accommodate that person. Whereas, if we expected disability from the outset, we could build our systems from the ground up so that they are fully accessible to people of all abilities. For example, all too often employers find themselves having to figure out how to make their company’s computer hardware and software accessible when a blind person is hired, rather than simply buying accessible software ahead of time in the event that a blind employee (or, really, anyone who might not work well with graphics-based technology) is hired in the future.

So, I challenge you not to be surprised by disability. Instead, expect it. Expect that 15-20% of the people you will meet will have some physical or mental difference that affects their ability to access one or more environments. Expect that the people with whom you interact may have differing needs or strengths. Don’t be surprised if someone in your workplace, school, family, social circle, or anywhere else has a disability, perhaps one you didn’t notice at first. Their revelation doesn’t affect their belonging in that social space. It doesn’t mean that their successes are somehow inspiring or unusual. It just means that they may do some things in a different way. Perhaps once we start to think of disability as regular and mundane, we may find it easier to accept those who have disabilities as ordinary people.

ableism, Psychology, research, Solidarity

A Threat in the Air: How Stereotypes Affect Us, and How We Can Rise Above Them

I’m walking home from the bank, along familiar sidewalks. My mind wanders from thoughts of my latest project at work, to the book we’re reading in my book club, to thinking about dinner. It’s my turn to choose the restaurant my husband and I will visit for our weekly date night. Amid my internal debate about whether I feel more like Indian or Chinese food today, I absently round the corner onto my street, a moment too late. My cane misses the street sign and, instead, my head slams into it. I freeze in shock, pressing my fingers on my forehead to extinguish the pain. After a few seconds, the pain subsides, and I keep going.

The physical pain is gone, but a new sequence of thoughts takes hold. I wonder how many people saw me crash into that sign? And what were they thinking? These bystanders had no idea about the paycheck I just put into the bank, no clue about my taste in novels or ethnic cuisine. They only know that I carry a white cane and my eyes dart around. To them, I’m likely just a poor blind lady who ventured out by herself and crashed into a pole. I wouldn’t mind much if they just thought I was a klutz. But the fear that they could blame my accident on blindness cuts to my core. Might my accident confirm their belief that all blind people (or, at least, most of us) are bumbling fools? And, at the root of my worries is a fear that they are right. What if there is something fundamentally wrong with me because I am blind? What if I’ve just been tricking myself into thinking that I have a happy, well-rounded life, when most of society seems set on telling me that my existence is flawed?

As I turn into my driveway, I feel the blood pulsing in my forehead where I bumped it. A welt is forming, a visible mark of shame. I’m relieved to get back home, away from the judgment.

The above scenario is hypothetical, but the thoughts and feelings described are common to many minority groups. It’s a phenomenon known as stereotype threat or, more broadly, “social identity threat.” It’s the fear of being judged based on stereotypes about one’s group—be it one’s race, gender, disability, or other characteristic. The pioneering social psychologist Claude Steeledescribed social identity threat as a “threat in the air” because it can hang over any setting where stereotypes might come into play. It may be felt by visibly disabled people, or by people with invisible disabilities asking for accommodations. It may hang over the female engineering professor who’s the only woman in the department meeting, the African American teenager checking the race box on his SAT, or the low-income person using food stamps at the grocery store. Regardless of the particular identity, social identity threat comprises a series of interrelated worries: Do people think less of me because of their stereotypes? If I mess up on some task, or do something else stereotypical (like getting emotional as a woman), will they judge me even worse? Will my actions or mistakes reflect badly on other people who share my identity (other disabled people, African Americans, etc.)? And, are their stereotypes actually true? Is there something fundamentally wrong with who I am?

Notably, we often aren’t consciously aware of these worries and fears. But, like carbon monoxide poisoning, this “threat in the air” can quietly pull us down.

Social identity threat has a number of negative consequences. The distracting worries it brings can hurt our performance on any kind of situation where we are being evaluated (like a standardized test or a job interview). In fact, research suggests that much of the racial difference in standardized test performance can be linked to social identity threat. The poor performance, in turn, can fuel our fears, leading to a vicious cycle. Another way we might cope with social identity threat is by hiding the identity, if we can. After all, if others don’t know I am blind, they can’t judge me based on that. So, people may choose not to use assistive devices like canes or hearing aids, even if those devices could help them. People with invisible disabilities may not request needed accommodations, or people with low incomes may not ask for financial assistance. Finally, if we have an identity which can’t be hidden, we may just try to avoid the situation by not doing things or going places where we might be stereotyped. The woman may not major in engineering; the African American student may opt for a two-year college that doesn’t require the SAT; and I might get a ride home from the bank, even though I can walk it.

But, there is a positive approach we can take to keep stereotypes and judgments from ruling our lives.

In a separate line of research, Dr. Steele described how humans have a fundamental need for “self-integrity” which he defined as:

a phenomenal experience of the self … as adaptively and morally adequate, that is, competent, good, coherent, unitary, stable, capable of free choice, capable of controlling important outcomes … (Steele, 1988, p. 262).

In other words, we are driven to see ourselves as fundamentally “OK.” Steele theorized that self-integrity is a flexible system. So, when we take a hit in one area, we can preserve our self-integrity by building ourselves up in another area. He called this approach “self-affirmation,” and over the past three decades, researchers have found that simple self-affirmation exercises can reverse the course of social identity threat. The most commonly studied exercise involves having people choose their most important values, such as their friends or family, religious values, having a sense of humor, or being good at art. People then write or talk about why these values are important to them, or specific things they have done to uphold their values. Such exercises can have dramatic benefits for people who are stereotyped; for example, they can boost the grades of minority studentsWhen we think about our values or things we are good at, we may be less bothered by other people’s judgments or stereotypes. We remember that we are fundamentally OK in the end.

It’s important to note that a self-affirmation isn’t just chanting “I’m good enough, I’m smart enough ….” In front of the mirror. In fact, such empty platitudes can backfire. Instead, we can affirm ourselves by reflecting on real, tangible indicators of who we are. For example, before going into an identity-threatening situation or after getting out of one, you might:

Think about something nice you’ve done for someone recently.
Think of a recent accomplishment you’re proud of.
Carry a symbol with you that represents your passions and connections to others. For example: a family picture, a wedding ring, a religious symbol, or button or ribbon from a political group.
When you get a written compliment (like a good performance review at work), save it, and review it if you’re feeling down or insecure.
Phone a friend. Talk to people who see you positively and love you unconditionally. Processing identity-threatening events with others who share your experiencescan be particularly helpful.
Laugh. There’s a reason why TV shows like SNL and John Oliver’s show became more popular among liberal Americans after last year’s election. Humor disarms fear and can counteract physical stress responses.
Above all, remember that we can control what we do, even though we can’t control other people’s judgments and stereotypes. We have the power to be the best people we can be.