Written by Aaron Rapp //
Eden was different, but I couldn’t imagine life without her—much less remember it. Some of my first memories involved going to a “mommy and me” sign language class, when Eden, my baby sister, had just been diagnosed with Trisomy 21 (or Down Syndrome). As Down Syndrome affects auditory learning much more severely than visual learning, my mom had decided to learn sign language in order to communicate with her. It worked: Before Eden knew a dozen words, she knew more than 60 signs.
Because we were so close in age, much of my life revolved around Down Syndrome Societies, advocacy networks, and other forms of disability ministry. IEP (individualized Education Plan) days were my favorite; the only time my mom baked scones would be for our meetings with the school administration. For me, having a sister with a disability was normal.
Middle school changed that.
The revulsion and fear my peers felt toward those with disabilities, and the mockery that ensued as a result, shocked me. Even my friends—caring Christian kids who didn’t swear or gossip much—joked about who belonged on the “short bus” or needed to go to “special classes.” One lunch, they all took turns daring each other to drink from a water fountain that “some retard slobbered all over.” They giggled and swaggered, each balancing their bravery with their disdain for the “special kids.” When I pointed out that learning disabilities weren’t contagious, one person responded, “Why don’t you drink from it, then?” I wish I had been brave enough.
Some might discount incidents like that as middle schoolers acting their age, but it is a reflection of American attitudes as a whole. American society reduces people with intellectual disabilities to imbeciles or saints–sometimes both. Either they are some kind of unbearable burden, or they exist on a higher plane of existence: free from the worldly concerns the rest of us face. Both of these stereotypes are not only false, but they are a great injustice those with disabilities. By focusing on their limitations we deny their humanity and keep them from living the most fulfilling life possible.
It may not be surprising that Americans with disabilities have long been marginalized or ignored. What should surprise and shame us is how recent and extreme this discrimination is. Fifty years ago, almost every child diagnosed with a disability was institutionalized. These institutions were not designed to encourage growth or development. Medical professionals assumed that people with disabilities wouldn’t be able to learn anything worthwhile, so they were housed like livestock. This proved to be a self-fulfilling prophecy: without guidance or support, many people with disabilities led short, miserable lives. Christmas in Purgatory, by Burton Blatt and Fred Kaplan, helped reveal the horrid conditions in many institutions. Bare cells in poor repair were common. Residents had almost no opportunities for recreation or education. The common areas were even worse: “The odor in each of these rooms is overpowering…Floors are sometimes wooden and excretions are rubbed into the cracks, leaving permanent stench. Most day rooms have a series of bleacher benches, on which sit unclad residents, jammed together, without purposeful activity, communication, or any interaction,” (Blatt 28).
As awareness of this injustice increased, the movement for disability rights gained traction. In 1975, the rights of education for people with disabilities was established by the Education for All Handicapped Children Act. Prior to this legislation, there was no obligation for schools to accept students with disabilities. Recently, public opinion has become more accepting of these individuals: the Americans with Disabilities Act (1990) made it illegal to discriminate against people with disabilities, and began a practice of integrating students with their neurotypical peers. Legislation and deinstitutionalization have been major steps forward for people with disabilities. For example, the average life span of people with Down Syndrome has increased from 25 years in 1983 to 60 years in 2015.
With that changing attitude, however, comes another problem: romanticizing those with disabilities. I remember telling one of my friends that my little sister had Down Syndrome. “Oh, that’s just precious,” she responded. “Downs kids are so sweet–it’s like they weren’t born with original sin.”
Most have spent time with people with disabilities would be puzzled by this perspective: I love my sister, but she is not more angelic than anyone else. She fusses, pouts, lies, and yells, just like any person does. In popular culture, people with disabilities are often presented as “so noble” for living with their disability, or they are treated as if they have some special understanding about life. While this may seem harmless, even honoring, it is deeply problematic: pretending that people with disabilities don’t experience the same range of temptations as neurotypical people is patronizing and ultimately dehumanizing. This mentality comes with an attitude that people with disabilities need everything done for them, and it promotes a system where people with disabilities are reliant on the charity of others.
So how can we help people with disabilities without setting artificial limits on what they can achieve, or babying them? Treat them like people. Simple to say, but not so simple to execute. Take their desires seriously and listen to what they have to say. If you work with people with disabilities, create an environment that promotes growth and learning, and you will be astounded at how much progress they are capable of. As people grow in ability, they must also grow in responsibility. Independence is only meaningful when it can be exercised, which means people must have opportunities to fail. This is not to say that people with disabilities need to be judged on the exact same scale as everyone else. Understanding a person’s diagnosis is critical to reacting appropriately to their behavior. Perhaps growth for someone with Autism is walking out of the room when they feel overwhelmed, rather than yelling and cursing. Maybe progress for someone with a cognitive disability is holding a conversation for one minute.
My workplace, Shepherds College, empowers people with disabilities by teaching vocational and independent living skills through a philosophy known as Appropriate Independence. I primarily work in the Residential Life, which supervises students after classes and on weekends. We guide our students through meal planning and preparation, chores, and mediate interpersonal conflicts. In every aspect of their day to day lives, we encourage our students to practice independence. A guiding aphorism is “never do for a student what they can do themselves.” Sure, it would be easier to cook dinner for all of my students, but by having them cook for each other, they get to practice skills they will need to live independently. With any ability, a matching responsibility arises: cooking for the group comes with the burden of cooking safely and efficiently. Having your own bathroom means you need to take ownership of cleaning it. For a responsibility to be meaningful, there also needs to be an opportunity for failure: I’ve had to deal with some disastrous meals and some horrid bathroom messes. But those moments, however unpleasant, are only temporary setbacks as students master independent living skills. The progress students make each year is undeniable evidence that people with disabilities can live independent, fulfilling lives.
Changing a culture is a daunting task. No specific person or group is to blame for the way society treats people with disabilities. But if each person is a reflection of God, then each person deserves a life of dignity and independence. Our society fails at providing that to people with disabilities, but there’s hope. We’ve made incredible progress in the last 50 years, and we can make even more in the next 50. By giving people with disabilities the respect and support they need to live independently, we can help create a nation that truly embodies the idea of “justice for all.”
Aaron Rapp serves as Residential Life Faculty at Shepherds College in Southeastern Wisconsin. His favorite part about the area is being able to listen to both Milwaukee and Chicago radio stations. He graduated from the Wheaton College Conservatory in 2015.