Mental vs physical disability in education

Enormous Efforts

            The disabled community is an entity that includes a growing number of individuals with a wide variety of experiences and incredible diversity of minds and bodies. Unlike most social and cultural groups that are united by some concrete shared background, experience, or trait, the disabled community is moreso united by a shared “other-ness.” Within the larger umbrella there are more specific factions; the Deaf community thrives and has developed its own distinct culture (though many Deaf people oppose the label “disabled”), and major pride movements have risen for wheelchair users and people with autism among others. Perhaps the most broad division within the disabled community is the separation between physical and mental disability. The disability rights movement seeks to gain equal representation for people with disabilities and increase access to critical resources, allowing them to advance. Though the movement intends to work for people with all kinds of disabilities, in practice it has been more successful in helping those with physical rather than mental disabilities. The narratives of successful individuals with disabilities show the incredible additional work required to accomplish their goals, especially when the individual is mentally disabled.

Harriet McBryde Johnson was an avid disabilities rights activist and civil rights attorney who used a wheelchair due to a degenerative muscular disease. In her memoir Too Late to Die Young, she reflects on key moments in her life and the way her relationship with death changed over time. The first memory she shares is the moment she realizes that she will die while watching a telethon fundraiser for people with her disease. She enters kindergarten and continues through her education through law school, concluding each major transition with the rational “When I die … I might as well die” a kindergartener, or  educated, or a lawyer, depending on the stage of her life (Johnson 8,9,11). She seems to pass through each phase casually, continuing her education because it seems like the natural thing to do. After law school, Johnson gained some acclaim as a disabilities rights activist and successful lawyer. She met with Peter Singer and spoke publicly against his argument for allowing parents to kill disabled babies, gaining much notoriety in the disabled community and beyond. Johnson shares her memory of meeting Singer and their interactions before and after in “Unspeakable Conversations.” This encounter and the article that followed made a name for Johnson and further advanced her professional career.

Johnson’s autobiographical narratives provide insight into the types of challenges she faced in advancing professionally and academically and suggest the means by which she worked through them. Her most obvious obstacle is the inaccessibility of physical spaces. Interspersed throughout the narrative of her meeting with Singer, Johnson notes obstacles that shaped her visit and instances when her disability became particularly apparent. She recalls a moment when she asked Singer himself to pull her arm so she could reach her food at dinner. At this point, Johnson pauses to note that “most of the assistance that disabled people need does not demand medical training” (Johnson 221). She requires assistance performing some everyday tasks but has learned over the years to clearly communicate her needs which can usually be handled easily. Physical barriers are a routine irritance for Johnson but do not seem to have significantly hindered her professional achievement.

Beyond the physical barriers, Johnson does not write much about obstacles preventing her access to education. Her early acceptance of her own mortality proved to act more as a motivational tool than a setback. The “might as well” philosophy that grew out of this understanding eventually saw Johnson all the way through law school, seemingly by accident by the tone of her account. She followed a fairly typical path through education. The only hint at divergence from the traditional education experience is an off-hand not that she attended “a ‘special’ school and then a ‘normal’ high school” (Johnson 8). She does not reveal the details of this “special” school or the process of her transition to the “normal” high school. It is impossible to know how this change took place but Johnson implies that her hard work and a genuine passion for learning aided the transition.

DJ Savarese is the subject and a producer of the film Deej and the first non-speaking autistic person to attend Oberlin College. Savarese was abused and abandoned by his birth mother at a young age when she realized he would be mentally disabled. The Savareses adopted him and taught him to read, write, and sign in order to communicate (Boylan). Savarese attended traditional classes at Grinnell High School and communicated with text-to-speech technology so he could participate in class like his peers. Savarese applied to Oberlin College in large part because of his confidence in its ability to welcome him and accommodate his needs. He was accepted and moved from Grinnell, Iowa to Oberlin, Ohio with his mother the year before beginning classes in order to feel more familiar with the area and practice being more independent (Savarese). Upon entering the college, Savarese continued to live with his mother then eventually moved into a dorm with an aide and his mother nearby but not on campus. An assistant also accompanied Savarese to class to help him navigate overwhelming aspects of daily life. Savarese was able to find the resources he needed to thrive at Oberlin and graduated in 2017.

In the film Deej, Savarese notes that few people consider the potential of non-speaking autistics and fail to provide them with the resources they need to excel. A major reason for Savarese’s success is thanks to the efforts of his parents. Unlike many non-speaking autistics, Savarese learned to read and eventually to type which allowed him to prove his capacity for thought and attend a regular school. His parents taught him these skills, putting in countless hours themselves, knowing it would be a necessary skill in order for him to become independent and grow academically and professionally. The early efforts of the Savarese’s family paid off as he became a gifted writer and now a graduate of Oberlin but one cannot ignore the enormous amount of work they had to do themselves.

Later, the family sold their home in Grinnell and relocated so Savarese could attend Oberlin without losing the familiar support system he needed.  In Deej, Savarese’s mother and father both make it very clear that they do not see their son as a burden and they are willing to help him achieve his goals by any means necessary. However, not all people with significant mental disabilities are not usually as well supported as Savarese. The Savareses are both willing and financially able to structure much of their lives around their son’s needs, but most people do not have this luxury. As a result, many mentally disabled people must rely heavily on the ADA to advocate for rights in the workplace and at school or find private organizations that can fill in the gaps where the ADA fails.

The story of the Somoza twins suggests a marked difference in the treatment of physically versus mentally disabled people. The Somoza twins were both born with cerebral palsy and spastic quadriplegia and both are wheelchair users. Anastasia Somoza can speak without assistance but her sister Alba cannot. Anastasia entered the New York City public school system in regular classes while Alba was initially placed in special education as the district deemed her incapable of keeping up in a typical classroom setting. Even once Alba proved her intellectual capacity to match that of her sister, the Somoza family had to continue fighting the school system to allow her to enter a regular classroom. President Bill Clinton got involved in advocating for Alba’s right to an appropriate education but the family still had to attend a hearing for the case even with the help of the President on their side.

Due to her inability to speak, the New York public school system considered Alba intellectually disabled despite evidence of her high mental capacity. The family had to go to extraordinary measures to advocate for Alba. Once she entered the regular school system and shed the institutional assumption of a mental disability, Alba was able to fully utilize the rights she is assured under the ADA. Her liberation from the label of mentally disabled granted her access to the resources she needed to thrive in school with a physical disability.

Johnson, Savarese, and Somoza all faced a series of obstacles unique to their experiences and managed to succeed academically and professionally. Though certainly all of their stories are impressive and required a lot of effort to reach accomplish what they have, Savarese’s experience and Somoza’s early life are particularly striking. Somoza’s remarkable narrative follows the dramatic fight between a determined family and a formidable school system that attracts the attention of President Clinton. Her story tends to end once she enters traditional schooling having shed her assumed intellectual disability and picks up again in the present where she has a career as a successful artist and teacher. Savarese’s narrative begins with an unbelievably cruel childhood followed by a marked transition thanks in large part to the massive efforts of an incredibly supportive family. In both Savarese’s and Somoza’s cases, the demand for the ability to speak was particularly important and the institutions in their lives required some semblance of traditional communication before considering them functioning individuals.

Institutions of higher learning paradoxically pride themselves for their exclusivity and market themselves as inclusive and diverse. Unfortunately, this often leaves disabled people excluded from consideration when measuring diversity. The structure of academia as it has existed for hundreds of years is centered around several principles that make it difficult for people to excel. These “topoi” as Margaret Price calls them in her intro to Mad at School, tend to widen the gap between those with and those without disabilities, and particularly those with mental disabilities (Price, 5). If a person does not best express their thoughts or learn in a way that these topoi require, they may struggle to succeed in the unyielding academic institution. Often when failure to comply with the demands of the institution stems from a disability, an individual will be placed in “special education.” Unfortunately, many students in special education are placed there despite the mental capacity to participate in a traditional school. Alba Somoza recalls her special education classroom as a place where “children were being warehoused and not receiving an education” (Somoza). Placement into special education makes it nearly impossible for an individual to continue to higher education and thus, advance as far professionally as someone schooled in a traditional classroom. This assumption of inability based on a misunderstood disability seriously limits career opportunities, limiting a person’s chance to be independent.

So what makes the difference between success and failure in academic and professional achievement? Not surprisingly, money seems to help.  Johnson was able to support herself and afford personal assistants so she could travel and advance her professional career. Additionally, the amount of time and money Savareses put into seeing their son to college would have simply been impossible for a family with fewer resources. The Somozas benefitted from media attention after speaking to President but still accrued expenses for the hearing against the school system. This particular privilege gives an immeasurable advantage to the people whose stories we know, setting them apart from those we do not hear about. Perhaps a more unexpected advantage is the ability to shed the a perceived mental disability. This worked for Alba Somoza once she proved her ability to learn in a traditional setting with only a physical disability. Furthermore, Savarese excelled in a traditional classroom with the aid of talk-to-speech technology, allowing him to communicate more “normally” and prove his intelligence. Johnson’s disability on the other hand, is physical, and she seemed to experience less adversity in achieving professional success in comparison to Savarese and Somoza. By analyzing the stories of Johnson’s, Savarese’s, and Somoza’s academic journeys, a disparity between people with mental and physical disabilities becomes clear. We also gain an understanding for the desperate need for education reform so no one else needs go to the enormous efforts to which these people and their families went.

Works Cited

Boylan, Jenny, and Ralph James Savarese. “Easy Breathing: How My Autistic Son Taught Me How to Live.” Medium, 16 June 2017, medium.com/galleys/easy-breathing-how-my-autistic-son-taught-me-how-to-live-7505fa11b13d. Accessed 7 Mar. 2018.

Johnson, Harriet McBryde. Too Late to Die Young: Nearly True Tales from a Life. Picador, 2006.

Price, Margaret. “Introduction.” Mad at School: Rhetorics of Mental Disability and Academic Life, University of Michigan Press, 2014, pp. 1–24.

Savarese, David James. Deej. Rooy Media, 2017.

Somoza, Alba. “About Me.” Alba Somoza, www.albasomoza.com/about-me/.