My friend Vincent [a pseudonum] lived in a state-run institution called Forest Haven outside of Washington, DC, from early adulthood until his mid-50s. Vincent had a mild intellectual disability. In the early 1980s, he was welcomed into a fledgling L’Arche community in Northwest DC, a place where people with and without intellectual and developmental disabilities shared life together.
I met him when I joined L’Arche as an Assistant (the L’Arche term for “staff”) in 2005. Vincent and I didn’t talk a lot about his time at Forest Haven, but he told me that he was a frequent pallbearer for burials on the grounds with no one in attendance.
At L’Arche, Vincent had his own bedroom, a local church community that loved him, neighborhood friends, and a beloved cat that he named Joseph. Vincent loved Elvis and walking to McDonald’s for coffee in the evenings. He was a good-natured soul with a beautiful smile and a subtle but goofy sense of humor.
When Vincent was terminally ill, he chose hospice care. He passed away in his sleep in his studio apartment in the L’Arche townhome, with a dear friend at his side. Vincent’s memorial service was a sight to behold. Hundreds of loved ones came. There were many beautiful testimonials and fond memories shared. Perhaps if he had lived out his days at Forest Haven, he would have had a graveside service attended only by the fellow residents asked to carry his coffin.
While Vincent’s early life was far too common in his day, the story of Vincent’s later years is sadly rare. In a society where a person’s worth is measured by his or her autonomy and material contribution to society, people with disabilities experience discrimination and loneliness. People with intellectual disabilities don’t want to be defined by what they can’t do, though. They want what all people want: safety, some choice in where they live, secure employment, respect, friendship, and love. They don’t just want to be included. They want to belong.
Providing the intellectually disabled with these fundamental goods has been a major struggle. Up until the mid-20th century, obstetricians who delivered infants with visible disabilities routinely informed parents that their children were not suited to be raised in a family home and required professional care in an institution.
Anyone who has seen the film One Flew over the Cuckoo’s Nest has an image of the medical model of care for people with disabilities: a sterile, colorless, remote building designed to conceal and calm those with developmental differences. The atmosphere is one of alienation and repressed discontent as patients stand in line for medication, huddle listlessly in the TV room, and take care not to react too strongly to anything or anyone for fear of physical and chemical restraint. Common practices in state-run facilities for the disabled that were not fully depicted in this film were the use of humiliating procedures such as outdoor group hose-downs in place of bathing and injuries from physical and sexual abuse.
During the 1950s and 1960s, de-institutionalization began to take place as disability advocates pushed for community care. The group homes that then sprang up all over the country were not necessarily much better, however. They were often plagued with abuse and neglect allegations, including mysterious deaths. Caring for the disabled in a group residence, even in smaller settings, still served to isolate people with disabilities from their communities. Sheltered workshops came into being to provide daytime employment alternatives for those with fewer skills, too often acting as a catch-all solution for those receiving developmental disability services, regardless of skills and potential.
The Americans with Disabilities Act of 1990 mandated the “least restrictive environment” as the standard of services. The medical model went out of fashion, and people with disabilities became more visible in the community. Today, the central value of care for people with intellectual and developmental disabilities is person-centered practice. The individual is the focus of care, with his or her own team consisting of family members, direct support professionals, therapists, and a case manager. This team gathers to advise and assist the person with a disability as she or he creates a plan of care containing annual goals.
Innovative service providers are developing new models to promote the maximum level of independence and choice for the individuals they serve. A growing trend in residential services is to separate housing from services, enabling people to change service providers if they choose without having to leave their homes, routines, roommates, and neighborhoods. Day programs are changing as well. Many people with disabilities want to have access to competitive employment and are capable of achieving that goal with reasonable support. There are others for whom a recreational program would be more suitable, and these programs are moving toward community-based models, meeting at libraries, dance studios, parks, senior centers, and other non-segregated community centers.
This person-centered practice can accomplish a lot toward giving people more choices and freedom. Just as important as freedom, however, is belonging—the understanding of one’s own meaningful place in the world. Nothing can take the place of belonging. We can’t calculate it. We can’t legislate it. We can’t hire for it. It takes real transformation of the heart, and it takes everyone.
One of the most common barriers to belonging for people with disabilities is a lack of natural relationships. Their friends tend to be the peers in their programs and people who are paid to spend time with them. Filling this need by being a friend to those with disabilities is a perfect calling for those who believe in a consistent ethic of life.
A consistent ethic of life proclaims that all human beings have inherent dignity and worth at every stage, in every situation. It is more than a philosophy to be debated in online comment threads. It’s more than public demonstrations and courtroom battles for a legal end to abortion, capital punishment, and assisted suicide. This ethic requires us to embrace those whose lives are most devalued.
There are many ways you can help someone in need. People with disabilities may need rides, meals, companionship, someone to read to them, help with housecleaning, and so much more. They also have so much to give—as Vincent did and as any person does when given the chance. So don’t just serve. Be served. Be open to transformation and love.