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a Girl Wreathed in Shadow [Repost]

“What does she want to order?”
“Can you sign him in?”
“Can you take her upstairs?”

On today’s blog post, Holly writes about how it feels to be talked over as a disabled person. All too often, if we choose to enter a place of business with a nondisabled person, staff will interact only with the nondisabled companion, sometimes quite explicitly ignoring our voices with questions like “What will she have to eat?” Of course, besides being an ineffective mode of communication (my friend can’t read my mind), such maneuvers are dehumanizing and disempowering for the disabled person.
Holly also brings up a related issue: the assumption that nondisabled companions can automatically serve as scribes, interpreters or in other access roles. For example, the clerk who insists that my sighted spouse help me fill a printed form instead of taking my dictation (as they would do if I came in alone). Of course, at times our family members or friends are happy to help facilitate access, but it shouldn’t be assumed that they have an obligation to do this.
A Girl Wreathed in Shadow

Greetings from the 2018 NFB National Convention!

This week, I’m at the 2018 annual convention of the National Federation of the Blind. Like the 15 other conventions I’ve attended thus far, this one is a nice balance of learning, teaching, and catching up with old friends.
This year I am again serving on the NFB national scholarship committee. My primary responsibility has been to meet one-on-one with our scholarship finalists. This year all the finalists matched with me have been graduate students. So far, I’ve met with students pursuing advanced degrees in teacher preparation, healthcare administration, Judaic studies, and environmental engineering. The conversations have been intriguing and thought-provoking. Every finalist has asked me how they can become more involved in our organization, and it is my honor and pleasure to invite them to serve. I can’t wait to see what they accomplish.
Our convention lasts until Sunday evening. To listen to live audio from the convention and read our proposed policy resolutions, go to the NFB convention webpage.

New Disability Wisdom Publication! Learning Braille Early in Life is Linked to Adult Happiness

Braille is essential for literacy among blind people. Despite its simplicity and utility, however, braille is taught to a woefully small percentage of blind children and adults, and debates surround whether or not blind kids with some usable vision, as well as adults who lose vision later in life, should learn braille. Research on the long-term benefits of learning braille is lacking. Just this week, the Journal of Blindness Innovation and Research published results of a study I conducted in graduate school, showing a direct correlation between early braille learning and overall well-being for blind adults. The bottom line? People who learn braille as children are most satisfied with their lives as adults, compared to people who learn braille later or not at all; and people who learn braille later in life are more satisfied with their lives than those who never learn braille.

I distributed an online survey and received usable responses from 443 adults in the United States who self-identified as legally blind. On the survey, the respondents were asked whether or not they had ever learned braille. If they had learned braille, they reported the age at which they were first introduced to braille, and whether or not they used braille as their “primary reading medium” during childhood-meaning that they received a majority of their school assignments and other reading materials in braille. Based on the responses, I divided the respondents into three groups. “Primary braille readers” were those who learned braille as young children and used braille as their primary reading medium in school. “Secondary braille readers” reported that they knew braille, but they used a different reading medium in school, such as print or audio formats. Some of the secondary braille readers grew up with low vision and learned braille later in childhood when they lost vision, while others were people who became blind as teens or adults and learned braille at that time. Finally, the third group consisted of those respondents who said they have never learned braille (nonreaders).

Then, all of the respondents answered a five-question scale of life satisfaction, the Satisfaction with Life Scale as well as a single question measuring their overall self-esteem, and another single question asking how satisfied they were with their work or school life. I also asked the respondents to report on their current employment status, how old they were when they became legally blind, and whether or not they still had significant usable vision (more than light and color perception).

When comparing the three respondent groups, the primary braille readers had higher scores on all three well-being measures (life satisfaction, self-esteem, and job satisfaction) than the secondary braille readers and nonreaders. For example, the average Satisfaction with Life Scale score for the primary braille readers was 10% higher than the average for the secondary braille readers and 28% higher than the average for the nonreaders. In addition, the secondary braille readers had higher scores on all three measures than the nonreaders.

When looking at employment rates, a slightly different pattern emerged: the primary and secondary braille reader groups had similar employment rates (56% of primary readers and 57% of secondary readers held some form of employment) but only 42% of the nonreaders held some form of employment. Among the respondents who were unemployed, however, a greater percentage of the primary than the secondary readers reported being students vs. simply being unemployed.

These results are interesting, but there is an alternative explanation worth considering. People who learn braille early in life tend to have more stable eye conditions where they are often totally blind, or nearly so, by school age. In contrast, people who learn braille later in life often have progressive eye conditions where they may lose vision gradually, or later-onset eye conditions that don’t begin until later in life. Thus, perhaps the primary braille readers may be happier simply because they haven’t experienced as many life changes related to losing vision.

To test this alternative explanation, I used a statistical technique to account for the age at which the respondents became blind, as well as whether or not they still had usable vision. Indeed, the respondents who had been blind since birth had higher well-being than the respondents who experienced vision loss later in life. However, even after statistically accounting for this factor, the link between braille reading history and well-being still held up, and the link between knowing braille and being employed became even stronger than before.

Some past research has established a connection between braille literacy, academic achievement, and employment for people who grow up blind. My new study suggests that the benefits of braille literacy also extend to well-being and happiness. Braille literacy facilitates access to information and makes many professional activities much easier to manage, compared with relying on audio or struggling to read print. In addition, it is quite possible that people who learn braille also develop a positive sense of disability identity. The nonreader group, who reported substantially lower well-being and higher rates of unemployment, may also tend to be disconnected from the supports of the blind community. My sample had a relatively small number of nonreaders, and future research will be useful to examine the experiences of those legally blind adults who either are not exposed to braille or who choose not to learn it.

It is clear that people who learn braille at a young age are most fluent with it, and experience the most benefit. However, one of the biggest take-aways from my study is that learning braille later in life is a worthwhile endeavor. As written in the journal article: “These results underscore the value of including braille as a core skill in adult rehabilitation programs, even for partially blind learners.”
Read the full article here

Is the Most Common Therapy for Autism Cruel? [Repost]

Trigger warning: ABA, aversives.
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When parents learn that their child is autistic, they are naturally interested in interventions to help their child that have a proven track record. At least in the United States, Applied Behavior Analysis (ABA) is often the first-line therapy recommended, and some insurance plans exclusively cover ABA. On this week’s post, I am sharing an article that summarizes the complex history and controversy around ABA.

At its core, ABA seeks to encourage behaviors deemed as “desirable” by society, while discouraging other behaviors deemed as “undesirable.” It works by changing reward structures. For many autistic people, “desirable” behaviors like making eye contact and speaking may be innately challenging or uncomfortable. An ABA program will create artificial rewards for these behaviors so that the child becomes motivated to engage in them. The darker flip side of some ABA programs involves punishments, or “aversives” to deter behaviors deemed as “undesirable” even when such behaviors may serve an innate functional purpose for the child.

As I read the article below, it made me think about how the definition of “evidence-based practice” may be more complex than it seems. A practice may lead to objectively demonstrable changes in an outcome, but are those outcomes truly positive for the participants? ABA does have an evidence base in terms of being linked to behavior changes deemed positive by neurotypical educators. But, these changes could come at a cost to the participants’ identities, and particularly aversive forms of ABA can cause lasting harm which could outweigh any benefits. As with most things, the best solution may be a hybrid approach that integrates components of ABA while still respecting the child’s neurology-“a focus on teaching skills, rather than normalization or suppressing autism-related behaviors.”
Is Applied Behavior Analysis, the Most Common Therapy for Autism, Cruel?

Research in Brief: Defining Disability Employment Terms

One of my regular gigs is writing a weekly column called Research in Focus, which summarizes a recent disability-related research study in terms that make sense to non-academics; people with disabilities and their families, service providers, and policymakers. Recently I’ve begun writing a companion monthly blog called Research in Brief. These short blog posts define technical terms related to a particular research topic, and then link to Research in Focus summaries related to that topic.
Here is a link to our latest Research in Brief, which defines terms related to disability employment and transition:
Defining Employment Terms