The Will, but Not the Way: Knowledge About People With Developmental Disabilities and Their Struggles

At one of the top and most liberal universities in the United States, it may well be assumed that students at UC Berkeley have a particularly high level of knowledge about issues oppressing different groups today. So, what level of information do students know about barriers and human rights concerns facing people with developmental disabilities, a group of people that many know little about?

Setting out to attempt to answer this question, I randomly interviewed several students on UC Berkeley’s campus, ranging from people who never spoke to someone with a developmental disability to having an extended family member with a developmental disability to having a developmental disability themself. Considering the wide range of interaction people had with the community of people with developmental disabilities, the answers I received were remarkably similar. 

To understand and then stand up for human rights issues present today, the first step is necessarily knowledge of who is included in a particular community. Almost everyone I asked could describe a developmental disability as a long lasting condition that may impact an individual physically, or in a way that others may not recognize. Moreover, most people could only name one condition that could be considered a developmental disability, most often Down Syndrome. Though the definition people offered was not, per se, incorrect, it overlooked diversity that developmental disabilities can embody, particularly with people’s inability to name types of developmental disabilities. As the CDC defines it, developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas which may impact day-to-day functioning. Some categories of conditions include intellectual disability (such as fetal alcohol syndrome), genetic and chromosomal conditions (such as Down Syndrome and fragile X syndrome), and certain infections during pregnancy. Other conditions include ADHD, autism spectrum disorder, cerebral palsy, hearing loss, version impairment, learning disability, and many other types of developmental delay. These conditions vary widely from each other and the degree to which a particular individual is affected by a condition also can vary significantly, constituting a diverse group of people with wide ranges of abilities and needed support. Current data shows that about one in six children in the US have one or more developmental disabilities, which is not surprising given the wide array of conditions and ability levels people with developmental disabilities are capable of.

Institution for people with disabilities and residence of Carrie Buck, defendant in the Supreme Court Case Buck v. Bell. Originally called the Virginia State Colony for Epileptics and Feeble-Minded when it opened in 1910, the institution still exists today under the name Central Virginia Training Center, and in 2020 will finally be shut down.

A similar trend continued about people knowing a little, but not all, of the details surrounding questions of challenges people with developmental disabilities faced in the past and today in America. When asked about the plight of people with developmental disabilities historically, everyone captured the essence of the social struggles of being brushed aside and ostracized, and the lack of physical access. But, few people spoke to the culture of being locked away in asylums or the Supreme Court case Buck v. Bell that approved the eugenic sterilization of a woman with a developmental disability in 1927. Comparing the past to present day, people recognized that struggles have reduced for people with developmental disabilities, though they still hold a place in society today. Students referenced the discrimination people with developmental disabilities face, and some even reference barriers in institutions like academic or professional. When discussing today, more students had an awareness of the broad institutional struggles people with developmental disabilities face in the workplace, academic, and for those who need it the care-taking field. However, people knew little about the specific struggles still prevalent.

In the workplace, people with developmental disabilities have the lowest rate of labor force participation compared to other disabilities, and this rate continues to drop, suggesting significant barriers for people with developmental disabilities. For students with developmental disabilities able to attend general education classes, or mainstreamed, studies show that K-12 students with disabilities are bullied by their peers at a much higher rate, increasing absenteeism and misbehavior. Also, students with disabilities are twice as likely to be suspended than students without disabilities, corresponding with higher rates of dropout and incarceration. Students with disabilities who remain in special education classrooms may be physically restrained or secluded in a room by themselves for misbehavior, with different schools using these disciplinary tactics at different rates. These tactics sometimes turn deadly however, with cases of students with disabilities passing away as a result of excessive restraints. Starting in 2019, California law AB-2657 went into effect limiting the use of restraint and seclusion only if the students behavior poses immediate physical harm, with school officials not allowed to use it as a form of discipline. 

“We need to give people with disabilities the ability to contribute in the way that they are able.”

Anonymous, UC Berkeley Student

In spite of the lack of knowledge students at UC Berkeley appear to have, many people I interviewed expressed compassion and a need for everyone to make more of an effort to bring people with developmental disabilities out of the fringes of society to be included just as everyone else. Most heartening, in the words of one individual I interviewed “we need to give people with disabilities the ability to contribute in the way that they are able.” The positive regard students possess for people with developmental disabilities can be extremely difficult to teach. Knowledge, on the other hand, can be acquired with the appropriate will of an individual.

The desire is present. The will to include is here. The obstacle, then, is the gap between this sentiment and the practical knowledge about people with developmental disability and the issues they face, necessary elements to be aware of to strive toward the goal of inclusion. If people are unaware of the wide levels of abilities included under developmental disability, how are we supposed to include? If people do not know about the terrible history of treatment of people with developmental disabilities, so too are people unaware of the tendency of others to infringe on the human rights of people with developmental disabilities. If people lack awareness of what issues people with developmental disabilities face today, how are we supposed to keep our elected officials accountable to advance, and not detract, on the rights of people with developmental disabilities? Knowledge itself will not solve the problems facing communities of people with developmental disabilities, but it is a critical springboard to launch these issues into public awareness so that people with developmental disabilities do not continue to be left behind by the public at large.

Disclaimer:  Five interviews conducted with consent of participants. Conducted on February 26th, 2020. One quote included by an anonymous student.