Dark Humor, Disability, and Community Coping [Reblog]

“If we don’t laugh, we’ll cry. So why not laugh? It may not be funny now, but it will be one day. I think. I hope, because sometimes, hope is all we have.”

A few years ago, I was having dinner with two of my blind friends. We started trading stories of times when we struggled to use basic amenities while staying in hotel rooms alone. Struggling to distinguish between the regular and decaf coffee without reading the labels, or to find the climate controls (which were conveniently on the far opposite side of the room from the air vents). I shared the story of the time I was staying at Gallaudet University, and I couldn’t figure out why I could hear nothing on the TV but static. I called for help, only to be told that I’d accidentally placed the television in a silent mode for deaf viewers. Another time, a power outlet in my hotel room appeared to be broken, and after several days and having an electrician look at it, it turned out that the outlet only worked when the room lights were turned on-and as a blind person I’d missed that fact.

As my friends and I shared these stories, we began to laugh. One person would laugh, which would make the next person laugh harder, and so on. When I finally caught my breath, I thought about how a bystander probably would have no idea why we were laughing so hard about bumbling around in a dark hotel room trying to use the TV or the hair dryer. My husband would probably only somewhat get the joke. To most uninitiated sighted people, the situation would be sad or strange, but to us it was hilarious.

But what happens when a disability-related situation is more than just an inconvenience? What about the times when we encounter discrimination, hostility, abuse, extreme physical pain, a threat to our survival?

As this blogger suggests, it may be in the most serious disability-related situations when it is most imperative to laugh. Because if we don’t laugh, we’ll cry instead. And through laughter we can find hope.

Further, the humor that disabled people share with one another is borne out of our shared experiences. It arose out of segregation and is often a backlash against a world that tends to exclude us even today. Knowing I have a community who will laugh with me when I face discrimination gives me the confidence to keep trying.

Dark Humor, Disability, and Community Coping

#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

Producing Positive Disability Stories

I’m on vacation with my family this week! Instead of preparing an original post, I wanted to share an excellent article from a fellow inclusion consultant, Haben Girma
Haben was the first deaf-blind person to graduate from Harvard Law School, and was recognized as a White House Champion of Change by President Obama. A talented storyteller herself, she teaches people to frame difference as an asset. In an age where disability is often featured in print and online media, her practical tips for producing positive disability stories are worth careful consideration.
Producing Positive Disability Stories: A Brief Guide

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.

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.