Disability Identity Development in Students with a Developmental Disability
Oct 2022
Hayley Bates
My senior year of high school I applied and was chosen to be an “Integrated Physical Education Leader,” and the leaders’ goals were to make our peers feel less secluded and boost their self-esteem through social engagement. The class was inclusive: students of the special education department were combined with cherry-picked Integrated Physical Education leaders from the general education department. For a full school year, the other leaders and I attended Integrated P.E. every day without once hearing, saying, or reading the word disability. Not once did I question it, for this avoidance is typical (albeit problematic as I will explain) when referring to disabled individuals. A friendship between a typically developing (abled, not disabled) student and a disabled student usually has immediate positive connotations, bringing about praise for the “empathetic” and “honorable” typically developing student. But what do relationships with typically developing students do for disabled youth other than show basic human decency to a marginalized group? Abled individuals often neglect the fact that disabled individuals have their own personal identities because of the severe social stigma which portrays them as inferior, lowering them to child-like expectations. So, rather, what are these relationships not doing for disabled youth? I will explore the impact of abled teachers’ and peers’ knowledge or lack of knowledge about disability on their views of disabled students, and how this affects the treatment of disabled students in inclusive classrooms (ICs). Finally, I will analyze how this inhibits or stimulates disabled students’ ability to begin the development of a disability identity (DI). I will specifically be exploring this issue’s application to students with developmental disabilities (DD), which includes autism spectrum disorder, physical disabilities, learning disorders (e.g., dyslexia), ADHD, and intellectual disabilities (e.g., Down syndrome). DDs are usually present at birth but can emerge at any time during development. One in six children have a DD, so everyone has interacted with a disabled person in their life, whether they realized it or not (“Facts”). Confirmation from professionals of the connections I make in my analysis could inform America’s education system of the severe effects of stigma on disabled students and how to best minimize this. With the correct adjustments, a developed approach to education would help disabled youth to understand themselves and thrive without the barriers of discrimination.
Before evaluating the impact of education environment on the development of DI, we must determine what DI is and how it is developed. DI is one’s sense of self in terms of their disability status. Anjali Forber-Pratt and Marianne Zape interviewed 17 disabled college students to learn about their sense of DI, their relationships with abled and disabled people, and their engagement with the disability community. The goal of this research was to determine the role of disability community in DI development and contribute its influence into pre-existing models of DI development to create a modern DI development model. Past models had only focused on intrapersonal factors in the development of DI. Forber-Pratt and Zape’s research identified four statuses of DI development that individuals work through: acceptance, relationship, adoption, and engagement. The acceptance status is the time in which a disabled individual has become aware of their disability and acknowledges their disability status, accepting the fact that they are disabled. This process is often difficult because of the social stigma towards disability. In the relationship status, the individual builds relationships with other disabled people, learning about disability culture. The adoption status is when the individual determines what role their disability status will play into their overall personal identity and how much of disability culture they will integrate into their life. The engagement status is marked by one’s contribution to the disability community, showing other disabled individuals that it is possible to be self-accepting and live a positive life as a disabled person. The development model claims that having a strong sense of DI improves one’s overall well-being and resiliency in the face of discrimination (Forber-Pratt and Zape).
Because education for abled students is often not focused strictly on academics but adulthood preparation and developing a sense of self, DI should be considered in curriculum for disabled students for a truly inclusive education. This emphasis would validate disabled students as people with identities and aspirations. I will analyze two different examples of inclusive education approaches: one IC in America which aims to treat all students the same with the goal of disabled students learning from their abled peers’ behaviors and another inclusive education system in Canada which values DI and disability awareness. I will gauge whether the peer and teacher behaviors and expressed views from each approach example are in line with the values of the disability community and DI to determine whether the classroom environment is informed on disability. Then the contrasts in the effects of these two different approaches on disabled students will be explored. I will evaluate how these effects impact the ability of the affected disabled student to develop a DI, focusing on the beginnings of development in the acceptance status.
The American example of inclusive education comes from a short documentary called “Ruby’s Inclusion Story” about a first grader named Ruby who has Down syndrome. The documentary portrays a typical example of a popular IC approach: one which does not discuss disability. The documentary shows Ruby’s everyday life in an IC and interviews her family members and teachers about her journey transitioning from special education into inclusive education. Her teachers consistently emphasize the importance of keeping disabled and abled children together because they believe those relationships are extremely important to Ruby’s development and adulthood preparation. Her teachers also emphasize that Ruby’s abled peers serve as “role models” for the behaviors and habits they think she should be performing, although her peers are not aware of this nor of Ruby’s disability explicitly. They expect Ruby to do the same activities as her peers by mirroring their behaviors, and she only gets specialized academic attention outside of class and rarely during class. In addition, her teachers avoid the use of the word “disabled” and “disability” when referring to Ruby, rather calling Ruby an “inclusion student.” The use of euphemisms when referring to disabled individuals is common and even preferred by some disabled individuals. But individuals who use euphemisms are actually upholding the stigma around disability by doing so, according to disability rights activist Lydia X. Z. Brown: “Calling someone ‘differently abled’ is euphemistic. It is borderline cutesy and it diminishes the actual experiences of disabled people. It suggests that the term disability should be uncomfortable and therefore should be avoided. What this does is further increase stigma against disabled people by discouraging discussion about disability and what it means to be disabled.”
Because of the prevalence of the movement within much of the disability community towards ownership over DI to reduce stigma, it is clear that education which avoids the acknowledgement of disability is not fully informed of the wants and needs of the disability community. Ruby’s education, just like many other ICs, is informed by abled people’s perceptions of the way disabled people “should” be treated. This means treating students such as Ruby just like any other student, ignoring her disability status. Such treatment may be perceived as an act of “respect,” but this approach is tainted by the very stigma Ruby’s school believes they are reducing. Ruby’s school is merely attempting to prevent the occurrence of stigma by trying to make Ruby act like her peers and be perceived as “normal” by her peers, as evident by her teachers’ and mother’s expressed pleasure in the fact that Ruby began behaving like her typically developing “role models” (“Ruby’s Inclusion Story”). Ruby’s teachers and peers are choosing to treat her with decency despite her disability rather than openly embracing it as something that significantly influences how she views and interacts with the world. Ideally there would be no perceived “standard” or norm for how a person should think and behave, meaning there would be no perceived necessity to hold disabled children to the typically developing standard to any extent. Unfortunately, much of modern society is unequipped to understand the experiences and differences of people who are not considered the norm: straight, white, and abled. Because of this, marginalized groups like the disability community face violence and discrimination even from family, friends, caretakers, and teachers. So, many believe that not holding disabled children to any behavioral expectations would put more disabled youth in danger for not behaving like a typically developing person. However, this practice of encouraging disabled children to behave like their abled peers is surely not entirely effective — or even effective at all — for everyone whose education is focused on minimizing their expression of their disability. This is why disabled individuals are still verbally and physically abused in public and private spaces because no matter how hard people try, you cannot remove someone from their disability. We must start with diminishing disability stigma in youth to reach an accepting society that does not hold everyone to ableist (discrimination of disability, belief that abled abilities are superior) standards. When this acceptance becomes reality, disabled individuals will have the equal opportunity to develop a positive, full sense of self: one that includes their disability without the expectation that they change themselves.
Within the debate of how to best educate disabled students with this barrier of stigma and discrimination, some justify the avoidance of disability labeling and acknowledgement because discussing disability and associating students with disability will cause negative attention and stratification. One study by Dana Shifrer, which examined the effects of disability diagnosis on how teachers and peers treat disabled students, exemplifies this common fear among disabled students and their families. Shifrer studied the outcomes of 10th graders in their math class dependent on whether they were labeled as having a learning disability or not. Students diagnosed with learning disorders had poorer outcomes in school, as measured by the level of the math course pursued by individuals at the end of high school, and more negative attitudes and behaviors in comparison to similar students who were not diagnosed with a learning disorder. It was discovered that teachers’ expectations of achievement were skewed by stigma towards disability. Teacher expectations were significantly lower for identified students than the expectations for those who were not identified as having a learning disorder, and there is a direct correlation between teacher expectations and the performance of students (Shifrer). The lower the expectations, the lower the success of the student. Student interviews and surveys showed that peers viewed diagnosed students more negatively, which correlated to disabled students’ lower self-esteem (Shifrer). Academic competence and social acceptance are major contributing factors to everyone’s self-concept, according to renowned psychologist Erik Erikson (Forber-Pratt and Zape). When children who have a disability realize they are treated worse than their abled peers, they will perceive their low academic achievement and low social acceptance as being a result of their disability. This perception encourages the development of a negative view of one’s disability, for it is seen as a part of themselves that others disapprove of.
Although the open association of a disabled student with their disability status in the classroom is easily avoidable, it may not be a realistic long-term solution to reducing discrimination. In ICs, teachers know which students have disabilities if their parents disclosed this information. Whether this is disclosed with the whole class or not, a teacher’s knowledge of this can negatively affect a disabled student’s experiences — as exemplified by the study previously described — if their teachers are not educated on disability. Furthermore, many DDs are noticeable to abled people, such as a physical impairment or Down syndrome and behavior disorders which cause the student to behave differently or look different than typically developing students. Children are attuned to differences and inclined to treat people differently than themselves poorly. Additionally, children are not shy to ask questions. If teachers give an unsatisfactory explanation as to why a peer looks or behaves differently because of the desire to avoid disability identification, the student will go to other adult sources who will likely give a stigmatized explanation considering the negative societal view of disability. So, disability-aware teachers and institutions should be prepared to provide their students with informed answers and explanations. Avoiding an intervention (e.g., not identifying disabled peers or learning about disability) entirely or for many years would not diminish this poor treatment; the abled students would simply not know the underlying reasons for their peers’ perceived differences. This avoidance also directly harms one’s ability to begin the development of their DI. When students do not identify with their disability and are stratified by their peers because of misunderstood dissimilarities, it would not be feasible for one to accept their disability (which characterizes the first status of DI development) for social acceptance is often vital to one’s acceptance of themself.
Furthermore, there are long-term ramifications to having an undeveloped DI. Not developing one’s DI weakens resilience towards discrimination (which is inevitable in life as described previously because of people’s ability to notice differences) and lowers self-esteem (Forber-Pratt and Zape). Interventions or direct conversations and lessons about disability are important to minimize social stigma because “children without intellectual disabilities often do not understand the causes and symptoms related to disabilities, potentially leading to the perception that their peers with intellectual disabilities have negative traits and characteristics and are less competent in a variety of contexts” (McManus et al.). Additionally, research has shown no observable improvement in students’ views of disability in ICs unless there was a direct intervention (McManus et al.). Schools in British Columbia (B.C.) do acknowledge disability in their classrooms and go above and beyond in valuing DI in comparison to many other ICs like Ruby’s. A short documentary series on YouTube shows how B.C. public schools approach inclusive education. In these schools, all students are aware of their disabled peers’ disability statuses and all staff are educated on disability. The school acknowledges the curiosity, discomfort, and uncertainty that many students feel towards their disabled peers, and they view this as a “teachable moment.” Teachers address this through “demystification which is how we explain what is going on so they are not afraid or worried” (“[Inclusive Education in Canada]”). The disabled student and an adult who is close to them and understands their disability will ex-plain how and why they are different by having an “open conversation” about it with the class. This shines light on the student’s differences rather than trying to overlook and ignore them. Abled students and teachers will often work together to help their disabled peers reach certain academic or developmental goals; for example, autistic student Ahmed’s peers are encouraged by their teachers to encourage Ahmed to speak to practice his verbal skills. Through interviews with the students, it is clear they have been educated on disability, as they talk about their peers’ specific disabilities or explain why they perform certain behaviors. For example, one 6th grade student talks about one of their disabled peers: “We have one grade 6 boy, he’s been in our classes since, like, the beginning of kindergarten. He has autism. And like, I know what makes him upset and then what calms him more down” (“[Inclusive Education in Canada]”). Staff and teachers also do not shy away from words like “disability” and “disabled” in their interviews. This inclusive curriculum is informed about disability and integrates this knowledge into classrooms. So, how does this help disabled students accept themselves?
When identifying someone with their DI in education has intentions of empowering students and not strictly for a teacher’s awareness of a student’s differences, such as how the B.C. schools empower their disabled students, research has shown positive effects. A study which explored the effects of openly identifying with and discussing one’s disability status asked disabled college students to create projects with the goal of helping others understand their experiences with a learning disorder or attention disorder (Kreider et al.). At least one project was made per semester over four semesters by each participant, which could be in the form of art, writing, etc. Each student’s projects were categorized within one of five established categories, with each category designated as having either more positive or more negative emotionality towards disability. The change in the positivity or negativity of these ratings over time was analyzed to determine whether engaging in self-advocacy benefited or harmed DI development. The study found that “the observed significant changes signal a potential benefit to supporting and engaging college students with LD/AD in disability messaging as a form of self-reflection and self-advocacy” (Kreider et al.). Opting for euphemisms when referring to disabled individuals and not acknowledging disability upholds the negative connotations of disability and implies that disability is a shameful, taboo thing that should not be discussed. Lydia X. Z. Brown describes the effect of this phenomenon as justification for why they prefer to be referred to diagnosis-first rather than person-first or other euphemisms: “I am staking a claim in an identity that is important to who I am as a person. I am recognizing that my mind/body function atypically, and that because of this, I am constantly forced by mainstream social/cultural attitudes and the laws and policies that enforce them to choose between being othered (and then discriminated against or outright harmed) or accepting the idea that I must hide who I am by passing as an abled person.” The college students in the disability advocacy messaging study similarly claimed their identity by expressing this part of their personal identity, which benefited their understanding and acceptance of themselves as disabled individuals, which in turn is characteristic of the acceptance status of DI development (Kreider et al.). This is comparable to the actions taken in the B.C. ICs which highlight their disabled students’ voices and engage in learning about disability. Word-choice and teachers’ or institutions’ intention to high-light or overcast one’s disability status play a key role in the upholding or minimizing of stigma in any space occupied by disabled individuals and are reflections of one’s views of disabled people.
Despite the lack of effectiveness in avoiding the topic of disability in ICs to prevent discrimination, many educators, families, and disabled individuals are still apprehensive towards the idea of shining light on disability. In many cases, openly identifying someone or oneself as disabled leads to social stratification and discrimination as well. But there is proof that supports the methods of schools like those in B.C. in preventing the manifestation of these valid concerns. However, introducing a disability awareness intervention is time-sensitive, meaning an intervention during just any point in childhood or adolescence will not necessarily reduce stigma. A study conducted to test the effectiveness of varied interventions for disability discrimination among abled students correlated negative results to introducing students of middle-school age to these interventions (McManus et al.). Many of the middle school students’ views of disabled individuals worsened after the intervention. This was determined to be a result of “their concerns about fitting in, body changes, and adolescent egocentrism [which] may interfere with their ability to take others’ perspectives and experiences” (McManus et al.). But the same research showed that elementary and high school students’ views of disabled peers improved because of the intervention (McManus et al.). Research on children’s ability to notice differences in ability is still in the works, but it has been proved repeatedly that children notice differences in race and gender around 3–5 years old and show a preference for their own gender and race. Once children notice differences in the people around them and learn from adults or peers about diverse groups of people, children are at risk of acquiring discriminatory views towards groups such as disabled individuals (Odom).
This means introducing abled students to disability awareness and disabled peers during early elementary school is the ideal time to effectively encourage the formation of positive views of disability among abled students. Beginning this process during middle school may result in the opposite of the intended effects of an intervention. Although high school students benefit from an intervention, disabled peers would have to face their abled peers’ stigma-tainted views and behaviors for 14–18 years. Additionally, starting this learning process early would give students more time to grow, making inclusive behaviors and values second nature. To facilitate such interventions, teachers must be educated on disability as well, which would minimize the influence of stigma on these teachers’ views of and expectations for their disabled students. This approach would therefore foster the development of the most beneficial environment for disabled peers, an environment with minimal stigma because of informed peers.
Not every IC is the same, but reaching a consensus on what is important for the well-being of disabled students, understanding what would prepare disabled students to live fulfilling futures, and realizing how education could validate and shape the personal identities of disabled youth are all necessary to eventually develop and implement the most effective standard approach to education that values disabled youth. Achieving both consensus and implementation can reduce the discrepancies in the educational experiences of disabled children across the country, giving everyone a fighting chance at personal growth and a fruitful academic education. Further professional research into my analysis would validate the benefits of inclusive education and the idea that learning should transcend strictly traditional academic subjects to form more empathetic abled youth while helping disabled youth understand themselves as disabled individuals. Widespread implementation of these values of DI and awareness in education could build the foundation for a future that can move past expectations of “normal” people, behavior, and relationships so that educators and parents no longer hold their kids to ableist expectations and instead allow disabled children to “love themselves for who they are,” just as we tell our abled children to do.
Works Cited
Brown, Lydia X. Z. “How ‘Differently Abled’ Marginalizes Disabled People.” Autistic Hoya - A Blog by Lydia X. Z. Brown, 29 Aug. 2013, autistichoya.com/2013/08/differently-abled.html.
“Facts about Developmental Disabilities.” Centers for Disease Control and Prevention, 13 Sept. 2021, cdc.gov/ncbddd/developmentaldisabilities/facts.html.
Forber-Pratt, Anjali J., and Marianne Zape. “Disability Identity Development Model: Voices from the ADA-Generation.” Disability and Health Journal, vol. 10, no. 2, pp. 350–355. ResearchGate, Apr. 2017, doi.org/10.1016/j.dhjo.2016.12.013.
“[Inclusive Education in Canada] How We Do School.” Lien Foundation, 27 Sept. 2019, youtube.com/watch?v=XT0n5uTSjyY.
Kreider, Consuelo M., et al. “Disability Advocacy Messaging and Conceptual Links to Underlying Disability Identity Development among College Students with Learning Disabilities and Attention Disorders.” Disability and Health Journal, vol. 13, no. 1, Jan. 2020, doi.org/10.1016/j.dhjo.2019.100827.
McManus, Jessica L., et al. “A Meta-Analytic Review of Interventions to Improve Children’s Attitudes toward Their Peers with Intellectual Disabilities.” Contemporary Educational Psychology, vol. 65, Apr. 2021, doi.org/10.1016/j.cedpsych.2021.101948.
Odom, Samuel L. “Peer-Related Social Competence for Young Children with Disabilities.” Encyclopediaon Early Childhood Development, Jan. 2005, child-encyclopedia.com/peer-relations/according-experts/peer-related-social-competence-young-children-disabilities.
“Ruby’s Inclusion Story.” Ruby’s Rainbow, YouTube, 25 Oct. 2017, youtube.com/watch?v=wBz6glO5x5Q.
Shifrer, Dara. “Stigma and Stratification Limiting the Math Course Progression of Adolescents Labeled with a Learning Disability.” Learning and Instruction, vol. 42, Apr. 2016, pp. 47–57, doi.org/10.1016/j.learninstruc.2015.12.001.
Hayley Bates is from Libertyville, IL and studies in the College of Arts & Sciences at Washington University in St. Louis.