How to be authentically accepted without needing to perform [Repost]

In June 2023, the Journal of Visual Impairment and Blindness (JVIB) published a systematic review of research on social skills teaching to children and teens who are blind or have low vision. With the encouragement of my AFB colleagues, I wrote a letter in response to the article, and then I followed up with this blog post. The blog post includes links to two articles from the neurodiversity perspective on the dangers of masking/passing. There are also links to the systematic review itself, and to my letter. All articles are freely open to the public in full text.

We hope this blog post and the associated reading will spur discussion between blind adults, autistic and other neurodivergent adults, and parents and educators of both blind and autistic children on this important but under-appreciated topic.

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How to be authentically accepted without needing to perform

Special Kids Get Picked Last: “Special Needs” Has Become a Dysphemism

Our data suggest that special needs has already become a dysphemism (a euphemism more negative than the word it replaces). Special needs will likely become a slur, if it is not already, and it might eventually become a dysphemistic metaphor, akin to dumb, lame, crippled, deaf, and blind. These linguistic transitions, along with the data reported here, recommend against using the euphemism special needs and instead using the non-euphemized term disability.

Disability has been called by many names. Perhaps one of the most commonly used, and the most indirect, way of labeling disability is with the term “special needs.” I heard that term a lot growing up, and I never liked it, but I couldn’t put my finger on what I disliked about it. Perhaps it was that the phrase was often used in a condescending way, to signify difference or special treatment, or to refer to a segregated place like a “special needs classroom.”

When I started doing inclusion work, I was thrilled to hear fellow self-advocates sharing my dislike for the term “special needs” and advising that we just use the term “disability” instead. We can debate linguistic reasons why one term is better than the other, but ultimately, I’m interested in using the term that is most likely to lead to positive, inclusive interactions with nondisabled people. So, I was fascinated by a research study comparing how a dults in the United States (most nondisabled) judge individuals when they are labeled as having a disability vs. having special needs. (Full article is linked at the end of this post).

Dr. Morton Ann Gernsbacher and colleagues at the University of Wisconsin-Madison designed an online study where participants read through six scenarios. In each scenario, they had to rank-order their preference to partner with four different individuals. For example, in one scenario the participants read descriptions of four potential college roommates and ranked them in order of whom they would prefer to room with, while in another scenario, they rank-ordered four potential basketball teammates, and in a third, they rank-ordered possible partners for a cooking class. The researchers randomly shuffled the scenarios for each participant, so that each participant saw one scenario where one of the potential partners had “special needs,” a different scenario where one of the partners had “a disability,” and a third where one of the partners was labeled with a specific disability (randomly assigned to be either a sensory or a neurological disability). Besides the disability labels, the partner was described in an identical way for all participants. The researchers looked at the participants’ rankings and calculated, across all the participants and scenarios, how often the partner with special needs/a disability/a specific disability was ranked last.

By random chance, each partner should be ranked last about 25% of the time. So when a particular partner was ranked last more than 25% of the time, this signifies discrimination. Indeed, when the partner was labeled as having “a disability,” discrimination occurred, with the partner being ranked last 33% of the time on average. Discrimination also occurred when the partner was given a specific disability: across the different types of disabilities, they were ranked last 35% of the time. But the worst discrimination occurred when the partner was labeled as having “special needs.” Under that condition, across scenarios, they were ranked last 40% of the time. Statistically, partners were significantly more likely to be ranked last when they were labeled “with special needs” than when they were labeled either “with a disability” or with a specific impairment.

At the end of the study, the researchers also asked the participants to write down the first five words that came to mind when they saw the term “special needs” and the term “disability.” They categorized the responses and found that when the participants were thinking about “special needs,” they wrote down more negative words like “annoying,” “helpless,” or “needy” than when they were thinking about “disability.” In contrast, when thinking about “disability,” the participants wrote down more positive words like “strong,” “capable,” or “acceptance” than when they were thinking about “special needs.” In addition, the term “special needs” was associated more often with intellectual/developmental disabilities, whereas the term “disability” was associated more often with physical impairments. So, it is possible that some of the bias observed could reflect the heightened prejudice and stereotyping against people with intellectual and developmental disabilities compared with physical and sensory disabilities.

What’s wrong with saying “special needs?”

The researchers postulate three reasons why “special needs” might evoke more discrimination than “disability.” First, the term “special needs” is imprecise. When someone is labeled as having “special needs,” it is unclear whether they have an impairment at all, or how severe that impairment is. So, people might assume the worst, or feel uncomfortable with the ambiguity. Second, “special needs” is often associated with segregation: Institutions like “special education,” “special needs classrooms,” or “Special Olympics” are all, by definition, segregated to only serve disabled people. The phrase “special needs” may implicitly justify segregation, giving segregated institutions the praise of being “special” while implying that people who attempt to be included in the broader community (e.g., applying for a college roommate in an integrated dorm) do not belong. Third, the researchers cite examples of “special needs” being conflated with “special rights” or “special treatment.” The term “special needs” may activate feelings of envy that nondisabled people sometimes direct toward disabled people whom they perceive as unfairly taking “special” privileges.

Perhaps a phrase is just a phrase. And, what really matters is how we treat one another. But, this study shows that phrasing does matter. People can discriminate in very real ways based on first impressions, and when one person is described verbally to another, initial labels can set a powerful tone for those first impressions. This may be especially true when a parent or caregiver is speaking for a disabled person-someone who is too young to speak for themselves, or needs communication support. Describing such an individual as “having special needs,” even with the best of intentions, could make it harder for that individual to be accepted or valued in community settings, be it a daycare center, a sports team, a school, an adult recreation program, or a job.

In recent years, disabled people have pushed to replace the euphemism “special needs” with the straightforward term “disability.” However, many nondisabled people, particularly parents, educators or caregivers of disabled people, cling to the term “special needs.” This has resulted in another polarized debate between disability “insiders,” advocating language that they have claimed as identity-positive, and “outsiders” using language that is personally comfortable for them. A more disturbing development is the widespread use of the phrase “special needs parent,” which nondisabled parents may use to describe their own identities or experiences without regard to their child’s identity or language preference. While nondisabled parents certainly should be able to share their own experiences raising disabled children, it is important that they are sensitive to the complex history of ableism, including the ableism captured in language. As the researchers point out at the end of their paper, phrases originally intended to be euphemistic-like “special needs”-can eventually become “dysphemisms,” words with more negative connotations than the words they are replacing. Like other disability terms, “special” is even being used as a generic insult. Rather than just trading out euphemisms every few decades, we must work to stamp out the underlying biases and stereotypes that lead us to want to use euphemisms in the first place. Disabled people, including those with intellectual/developmental disabilities who are frequently stripped of their voices, must be front and center in that process.
Read the full study here

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.
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