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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.

PreEmployment Transition Services

Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help

In the 1950’s, psychologist Gordon Allport wrote about intergroup contact as a remedy for prejudice. Allport postulated that bringing different groups of people together is necessary, but not sufficient, to improve intergroup relations. In order to meaningfully reduce prejudice, Allport emphasized, contact between people from different groups must be one-on-one, cooperative, condoned by authority figures, and members of the two groups must have equal status. Allport’s “contact hypothesis” has been supported by evidence in the lab, as well as through natural experiments like the racial desegregation of schools in the American South.
Beginning in the 1970’s, many children with disabilities are attending their neighborhood schools with nondisabled peers. It is often thought that such integration will reduce ableism in our society. Teachers and principals may set up “buddy” programs or “friendship circles” to encourage contact between disabled and nondisabled students, in the name of reducing ableism. But, some school inclusion programs fail one of Allport’s critical tests: they place the nondisabled student in a helper role, and the disabled student in a lower-status “helpee” role.
As the below article points out, the status imbalance that some schools unwittingly encourage may explain why many mainstreamed disabled kids “may have successful buddy systems during school hours, and still be isolated after three o’clock.” In other words, relationships based on helping alone don’t confer the benefits of real, reciprocal friendships. Instead of breaking down barriers, they can serve to reinforce existing stereotypes and hierarchies.
Instead, the authors suggest fostering the natural development of friendships, teaching the nondisabled kids to listen rather than jumping in to help, and appealing to children’s natural sense of justice. This article is a bit long, but I encourage readers to pay attention to the practical suggestions presented at the end. The need for real inclusion is stronger now than ever. As the authors state:

We must guard against merely creating another generation of “professionals” and “clients”, with the former group seen as perpetually competent, and the latter, perpetually needy.

Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help

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.

research, The coming generation

On Curing Disability, Part 1

In the medical community and in popular culture, it is often assumed that most disabled people wish to be “cured” or “healed.” Along with this assumption, it is assumed that preventing or curing disabling conditions would benefit society as a whole. Billions of dollars are spent every year on biomedical research intended to identify and remediate the causes of disability, while public health campaigns urge us to take actions (like getting our vision and hearing checked) in the name of preventing disability. Just last week, scientists announced the first successful attempt to perform genetic treatment on human embryos, modifying the embryonic DNA so that they could avoid inheriting a fatal heart condition. This breakthrough renews questions about the benefits and pitfalls of curing genetic disabilities. Is medical treatment the best thing for people with disabilities? For society as a whole?

I first became interested in this topic as a college undergraduate when I was majoring in Biology and Society, a biology degree program that incorporated study of the ethical aspects of emerging biotechnologies. Early in my studies, I noticed that disabled voices were absent from research and policy discussions, or at least from the ones I was reading about. The literature I was reading seemed to start with the assumption that curing disability was always a good thing. As it turns out, views about treatment in the disability community are much more diverse and complicated than that. In this week’s post, I want to discuss some varying opinions about disability prevention and treatment in the “ideal case”-how people feel about the prospect of having their disability completely and cleanly “cured.” Next week, I will talk about the realities of current medical treatments, and the unexpected pitfalls of treatments that only partially work.

At the end of my undergrad program, I surveyed about 300 legally blind adults. I asked them how likely or unlikely they would be to take a “magic pill” that would completely and instantly give them full sight if it were available. Although most of the participants said they would take this pill, about 20% said they would be at least slightly unlikely to take the pill. I found that people who had been blind for most or all of their lives, as well as people who both felt good about their blindness and who felt a strong connection to the blind community, expressed the least interest in the magic pill. When invited to comment, these individuals said things like “I have been blind all my life and it is part of me” or “I think blindness makes me who I am. Why would I want to change that?” These individuals simply didn’t see a compelling reason for treatment. Several participants also noted concerns about the challenges of “going sighted” and learning a whole new skill set. Among the participants who enthusiastically said they would be “very likely” to take the magic pill, reasons included the possibility of being able to drive or read print unassisted.

A partial treatment for deafness, the cochlear implant, already exists and has been on the market for three decades. But it hasn’t received a unanimous embrace from the deaf community. Some deaf adults, and parents of deaf children, have been satisfied with the results. Others, particularly those who identify with Deaf culture (note the capital D used to describe the culture rather than the lack of hearing), worry that widespread cochlear implant use could weaken Deaf culture, particularly by reducing the use of sign languages. Like the minority of blind participants in my study, these Deaf individuals do not see themselves, or Deaf children, as broken or in need of healing. Instead they see themselves and their Deaf brothers and sisters as carrying a proud heritage. In fact, the American Sign Language sign for a cochlear implant is sometimes made to look like the sign for a vampire, with two fingers behind the ear in a stabbing motion-not exactly a sign of appreciation for the technology.
ASL sign for a cochlear implant

In its position statement, the National Association of the Deaf emphasizes that a cochlear implant is “not a cure for deafness,” a comment highlighting its imperfect efficacy. As we will discuss next week, an imperfect treatment can sometimes make things harder than no treatment at all.

As one more example, the neurodiversity movement emphasizes accepting people with neurological differences instead of trying to remove those differences. In a position statement, the Autistic Self-Advocacy Network writes:

The disability rights perspective within the Autistic community is represented in the neurodiversity movement, which promotes social acceptance of neurological difference as part of the broad landscape of human diversity and seeks to bring about a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone.

Importantly, this statement implies that neurodiversity isn’t just “not a bad thing”; it’s actually a strength that can benefit society in an accepting social context.

Clearly, then, there is a range of opinions in the disability community regarding the prospect of “curing” disabilities. Many disabled people support disability prevention efforts. But once they become disabled, the idea of having that condition reversed is one fraught with implications for one’s way of life, one’s identity, and one’s community. In addition, any biomedical treatment can bring up a host of religious, political and philosophical issues; for example, a few participants in my study said that they would be open to a treatment for their blindness, as long as it wasn’t derived from embryonic stem cells, which violated their religious convictions. As treatments become more scientifically feasible, we will all grapple with the risks and benefits of particular treatments to choose what is right for us as individuals.

So, what do I think of all this?

First, I fully support medical treatments that can reduce the physical pain associated with many disabilities, because pain is, by definition, an unpleasant experience. I also support medical treatments for conditions that shorten a person’s life expectancy. And, I support innovations to remove the attitudinal, educational and access barriers that are the real causes of disability for people with physical or mental differences. I would love to see the federal funds, currently being spent on genetic research for my eye condition, instead spent to subsidize training for more qualified braille teachers so that all children who cannot effectively read print can learn braille early in their schooling. I would like to see funds diverted from biomedical research to the increased production of power wheelchairs, removal of architectural barriers, and funding of more sign language interpreters and personal care assistants so that people with disabilities can live and work in their communities.

Biodiversity is what allows any species to thrive under changing conditions. For example, genetic diversity among bacteria enables them to survive an antibiotic apocalypse. When we think of human diversity, we often think of differences in skin tone or facial features. But, ability diversity is perhaps the crudest form of human difference, and I don’t think ability diversity is ever really going to disappear. If something ever happens to our global energy supply, or a long-term eclipse strikes the sun, I can imagine it might help our species to have a few million people who are fully adapted to functioning in darkness. I can imagine that people who know how to communicate smoothly over loud noise, or people whose brains are wired for concrete problem-solving, can be a real asset to our species. As Temple Grandin, an autistic livestock breeder and self-advocate, wrote:

What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.

(Temple Grandin, as cited in Baron-Cohen, p. 491).

In the coming decades, medical science will advance, and these conversations will continue. It is imperative that disability self-advocates are front and center in conversations about treating, curing or preventing disabilities. We have the most to gain, and we also have the most to lose.

Blind in the City, Past, Present, and Future, PreEmployment Transition Services

In the Age of Mainstreaming, Being with Other Disabled Folks is Still Important

It’s time for another reblog!
On this blog, I’ve talked about the benefits of disability friendship for adults. Today’s post talks about the benefits of disability friendship for children and teens.
Like this blogger, I was one of the “lucky ones” in that I received a typical education, but also spent time around other kids who shared my disability. These connections were first arranged by my assigned teacher of the visually impaired (TVI), who organized activities for the blind students in our school district. Later, our local blindness agency in my hometown set up a program for blind school-age children around the city. The program ran on weekends and during summers, allowing us to attend our neighborhood schools and still spend time together.
These programs need an investment of resources and labor to run well, but as the below post points out so eloquently, they are worth it.
In the Age of Mainstreaming, Being with Other Disabled Folks is Still Important