Our Most Valuable Flaws
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Here's what everyone calls "a feel-good story." When I was a senior in high school, the school nominated several students as candidates for Homecoming King and Queen. Since it was a public school with approximately 3,000 kids, there were many students nominated for this recognition. When I saw the email, I skimmed through the names of the candidates, considering who I should vote for. Of the twenty names it was easy to miss a few, but then, her name grabbed my eye: Michaela Young. Everyone was ecstatic -- but no one was quite as excited as Michaela herself. Two weeks later, when the results came in, the whole school was silent as we awaited the principal's loudspeaker announcement of who would be crowned King and Queen. As he read Michaela's name, the school was so overjoyed, no one could even hear who was crowned King. The Senior Class voted for a student with special needs to be Homecoming Queen. Everyone was so happy. What a kind, proud moment, right?
Many people would react with enthusiastic affirmation to such an obvious question. Of course the teenagers at Greenwich High School should take pride in voting for Michaela, a student with autism. But why is it a monumental occasion? Michaela is a seventeen-year-old girl who shares the same love for One Direction, basketball, and the Yankees as I and most high schoolers do, yet we think we deserve praise when individuals with disabilities are recognized by their able-bodied peers.
In 2015, the United Spinal Association released an online PDF about "Disability Etiquette." It highlighted different ways to discuss someone's disability and how to be respectful of boundaries, while not ignoring the person in general. The PDF placed a premium on treating these individuals as humans, stating things as simple as, "think before you speak," "make eye contact," and "don't assume." It reiterated that a disability does not define these individuals, for they share the same values as we do (United Spinal Association 6). It is part of their identity, and there is no reason for them to be victimized or ostracized. They are individuals and should be treated as such.
In the past fifty years, one might imagine that society has become more accepting and understanding of those with developmental disabilities, but one would be wrong. That might sound rather aggressive, given the fact that we no longer isolate and institutionalize these individuals, but despite our best efforts there is still obvious discrimination. For example, in 2005 Sarah Green et al. published a study that focused on the impact of discrimination in the lives of those affected by a disability. A woman whose aunt is permanently in a wheelchair and can only move one hand described the distinct difference of treatment between her aunt, and her own experience on crutches: "What I found to be very eye-opening . . . is how people will refuse to see you . . . if you're that disabled… They feel uncomfortable . . . They will walk around in circles trying to get away from you" (Green et al. 203). In addition, most public schools are considered "dropout factories" (Grindal). After the deinstitutionalization movement in the mid-1980's, schools began to take the initiative to create programs and inclusive environments that provided the help and support that students with disabilities require ("Access and Inclusion" 744). Despite our changing sensibilities, as of 2014, only 63% of students with disabilities graduated from their high schools: approximately 20% lower than the national average (Grindal). These "dropout factories" might be supporting the students IEP's and upholding the Individuals with Disabilities Act (IDEA), but they are not fostering an environment where these individuals can thrive. So, where do these students go when they are done with school?
Polite society feels the need to praise those who work with people with developmental disabilities, while not changing its attitudes toward this group. When I walked into Greenwich High school on my first day, I spent several minutes observing the structure of the Student Center. Since I was a freshman, there weren't many places that I could sit, save for the freshman section, or a lone table here or there. I saw one student, a sixteen-year-old male with Down Syndrome socializing with some upperclassmen at the end of the period. As the "end-of-class" bell rang, they all waved goodbye to him. Everyone watched as he left the senior section, headed for the empty tables where most special education students ate. I was struck by the sight of them waving goodbye as he went to go eat lunch alone. They didn't mock him, or make him leave, but none of them offered to sit with him either. It probably never even crossed their mind that Michael would appreciate an invitation to sit with them.
What is at the core of how society separates "ability" and "disability"? The senior boys were nice to Michael, they respected him, and their interactions with him seemed genuine. But we are quick to organize our lives into boxes -- a certain box for our work lives, our family time, and our service lives. There are boxes that encompass friends and coworkers and close relatives. However, this structure makes it difficult to accept the integration and inclusion of the special needs community. Why does the act of combining the box for service with the box designated for friends require such thought and effort?
In 2016 and 2017 I was President of the Come Together Club, which organized lunch schedules of special-education students and their general-education peers to ensure that no student with special needs ate lunch alone. We had seventy-five students sign up to volunteer one lunch a week to eat with some of the students, but only eight of them kept the commitment throughout the year. It felt weird to give students volunteer hours for sitting with their peers, but this promise seemed to get the general education students more excited. The way they saw it, they were giving up some of their time to make this group of students feel special; in return, they would feel good about their service and would be rewarded with volunteer hours. However, the sixty-seven students who failed to keep the commitment demonstrates the power of the "able-bodied ideal" (Green et al. 208). The students who initially signed up to volunteer were all kind-hearted people, but even the Come Together Club couldn't change the way these students viewed their disabled peers.
Don't get me wrong, Come Together Club had good intentions. Almost every day of the week, the special-education students had the opportunity to make friends and meet new people during lunch, but giving volunteer hours turned something as simple as eating lunch into an act of charity. I have two cousins with special needs and went to a public school that integrated special education students in most of the general education classes. These experiences shaped what I hoped would be the goal of Come Together Club: I wanted to increase the participation from the volunteers because I had seen the difference a friend can make. I created a Facebook group, and would bring some of my friends to eat lunch with the participants and myself, with the hope that they would see how simple it is to eat lunch with new people. I had a vision of the change it would bring to the high school: my peers would share my excitement about including and befriending these students, and soon that dark section of the Student Center would lose its reputation of being so different. However, by giving volunteer hours to students, didn't I further reinforce the organized separation between service and inclusion?
Humans are by nature social animals. Often times, students with disabilities lack social skills, but schools have the ability to provide a great environment for all students to experience growth as social creatures. Programs such as IDEA are put in place to ensure that all students with disabilities have the opportunity to receive a public education that is suited to their individual needs, and best prepares them for the future (Individuals with Disabilities Act). However, despite its good intentions and success, "the benefits of the IDEA have not been equally distributed" and depend on a variety of factors, especially socioeconomic status (Koeskí; Dalgarn 6). A recent study by the National Council on Disability revealed that forty-four states "failed to ensure compliance with transition requirements for all categories on special education" (Dalgarn 2). These programs intend to promote learning in the classroom, but in addition to the lack of equal distribution, they have not solved the problem of social inclusion.
Perhaps these students might find more social inclusion in workforce. After high school, many individuals with special needs will look for jobs if pursuing higher education is not an option. Reporting on research by Gerhardt, Lanier, and Howlin, in his book Adolescents and Adults with Autism Spectrum Disorders, author Fred R. Volkmar says, "Unfortunately, the data indicates that most adults with autism are either underemployed or unemployed" (21). As of 2016, only 17.9 percent of people with disabilities were employed ("Persons with a Disability: Labor Force Characteristics Summary"). Nonetheless, there are organizations that help guide the integration into the community by providing a place for individuals to seek opportunities for work when they are done with formal education. For example, Prospector Theater in Ridgefield Connecticut is a non-profit movie theater that offers "meaningful employment opportunities for adults with disabilities" ("Welcome to the Prospector Theater"). The Director of Development, Mike Santini, hopes that this environment will shatter the "expectations of what it means to have a disability" (Quinn). The implementation of organizations like the Prospector Theater is a step in the right direction towards seeing those with disabilities in a different light, but these places of work are the exception and not the rule.
Looking at the laws passed and the action taken by Congress and various organizations, one might think that we should be patting ourselves on the back for our successful process of including this minority. However, the actions that remain are the most important part -- it is necessary that society adjusts its mindset towards this group of people. While most are not outwardly rude or mean, the uncomfortable feeling that accompanies most interactions directly results from ostracizing those with disabilities. We owe more than volunteer hours; we should work towards adjusting our fundamental attitudes concerning the inclusion of those with disabilities in our daily lives. How is it that society can come so far and yet still struggle to do the most basic thing?
In his book, Becoming Human, author and philosopher Jean Vanier explores the notion that society has instilled a fear of weakness within us. He comments on how humans define the ideal individual as powerful and productive, which in turn, "disenfranchises the old, the sick and the less-abled" (45). Our society places a premium on "growth, development, and progress," resulting in a lack of knowledge and experience when it comes to interacting with people who are physically or intellectually challenged (Vanier 45). Vanier says our discomfort stems from fear we will be swallowed by the pain of those who are less powerful than us, a pain we struggle to understand (Vanier 70). Instead of facing and embracing the differences between ourselves and others, we turn our backs and react as though a bumblebee were pestering us: maybe if we don't bother them, they won't bother us. Humans struggle to accept this atypical way of life, for that acceptance would result in a weakened sense of our identity and self-image (Vanier 48).
We have made efforts to integrate this community into our lives, but these attempts best reflect our values, instead of considering what would be most beneficial for those with disabilities. For example, twelve-year-old innovator Alexander Knoll is making major advancements with the development of "Ability App." Ability App serves as a resource for individuals with disabilities and their caregivers to view the "disability friendly features, services and employment" at various locations, including wheelchair ramps, quiet spaces, service animal relief location and more ("What is Ability App?"). It is undeniable that technology holds forth lots of promises. Furthermore, this forward-thinking app makes day-to-day tasks easier for some who are living with disabilities -- but not all. With this in mind, it is necessary that we re-examine how we define the value of life. We have created an opportunity for the disabled to engage with our society, but we are failing to question how we are asking them to keep up with us. What about the person who will never be productive? How do we determine the meaning of his or her life? For some, even Ability App cannot provide the help and care an individual requires, and if a person with an intellectual disability cannot take advantage of technology to integrate with our society, we define their life as having minimal value. We have created a bubble that engulfs this population, equipped with resources to integrate these individuals, but we have still failed to consider how our value system needs to be changed.
One day in second grade, my best friend Jimmy, who has autism, started having one of his meltdowns. I remember seeing the combination of frustration and panic spread across my teacher's face as she tried to calm him down, control the class, and get in touch with Jimmy's aides. After a ten minute struggle to get him out of the room, one of the aides re-entered the class and said she needed my help. I got out of my seat, confused, hoping that Jimmy was okay. She led me to where he sat on the hallway floor, crying, and when I asked him why he was upset, he said, "I just wanted to sunbathe." I smiled, laid down, held his hand, and said "Let's sunbathe!" We lay quietly on the hallway floor, and within a few minutes we were both smiling. It seemed so easy, but it wasn't until several years later that I realized the complexity of this encounter. To what extent does the classroom need to conform to people like Jimmy, and to what extent must they conform to the classroom? Jimmy challenged the structure and order of Ms. Smith's second-grade class, a structure derived from society's set of values and ideas. We value productivity, and therefore, should become disciplined in the way society needs. Parents and teachers do not want their child to fall behind as a result of others. It is this fear of being absorbed by someone else's needs that drives our separate grouping of this community, but some people are always going to have needs that do not fit the paradigm.
Every individual matters, and until our treatment of everyone reflects that, we should not stop trying to improve. Recently, the news has been abuzz about a potential cure for Down Syndrome. What are the deep reasons we are inclined to "cure" it? This is not about whether we should seek to alleviate suffering--of course we should. But we must still interrogate the fundamental discomfort we feel about individuals with developmental disabilities because they will always exist. Perhaps we feel as though the elimination of something like Down Syndrome would help to ease our own discomfort with how those with disabilities challenge social values. Maybe there will be fewer individuals who threaten our success with their needs and weaknesses. If we define a "valuable life" as productivity and personal autonomy, then we may be induced to ask about someone who can't keep up, "what is the value of their life?" We must re-examine our desire to define the value of life by productivity and personal autonomy.
I grew up by the mantra, "You can do anything you want, as long as you have love in your heart." My best friend in elementary school was Jimmy because he best embodied that quote -- his heart was filled with love, so I always assumed he could do most anything. All of my life, I was exposed to this minority as family members and friends, and they were instrumental in helping me grow as a person. I never felt tied down or swallowed by their needs or pain, because I could never separate friends, family, and service into boxes: they are my friends and family. Take a moment and think about how you react when you see someone with a disability around town. Do you avert eye contact, or feel sorry for them? As a society, we have an obligation to adjust our mindset and attitudes towards this group of individuals because the criteria for determining the value of a life stems far beyond productivity. We will never be able to eliminate all disabilities, but hopefully, there will come a day where the value of life is defined by more than one's abilities.
 All names have been changed to protect the privacy of the individuals