disAbility
When does one assume the status of disabled? I have thought about this question since my Parkinson’s diagnosis over three years ago. The Americans with Disabilities Act (ADA) says it is when a physical or mental impairment substantially limits one or more major life activities.[1] It turns out that over 61 million American adults, or 1 in 4, live with at least one type of disability. Some live with multiple types. Six forms of disability, listed in order of prevalence, include movement, cognition, hearing, vision, independent living, and self-care.[2] Worldwide, 15 percent of the population, or 1 billion people, live with one or more of these disabilities.[3]
A vexing issue around disability is how often those of us with defined conditions that are associated with disability, such as Parkinson’s, are kept out of the game even if our tryouts are excellent.
Many people view disabled persons through a lens of deficits as opposed to strengths, and these people see what they assume those who are disabled cannot do as opposed to what they can do.
What Disabled Persons Offer
Studies have shown that persons with disabilities can actually do a lot. For example, when businesses make hiring people with disabilities a priority they outperform businesses that do not.[4] Disability-friendly businesses had 28% higher revenues, their net income was twice as much as other businesses, and their profit margins were 30% higher.[5] Moreover, the U.S. Department of Labor found that disability-friendly employers had a 90% increase in employee retention.[6]
Having disabled persons in the workplace also fosters a culture of empathy and support, which benefits everyone. Non-disabled persons become more aware of how to make the workplace more inclusive. Disabled persons contribute distinct insights, perspectives, and wisdom born of resilience, discipline, and typically a strong work ethic. Because persons with disabilities must constantly adapt to their surroundings, they also bring creativity, agility, persistence, openness, forethought, and capacity for solving problems.[7] Hiring disabled workers makes good sense.
Frustration
My friend Eric recently had an experience of colleagues seeing disability through the lens of deficits and he steamed with frustration. After interviewing the last of four candidates who had applied for a senior staff position in the University’s library, he and his colleagues met to discuss the applicants and make a recommendation to their Dean.
Eric said, “We were discussing the candidates and deliberating about whom to recommend for hire. Although none of the first three stood out, this last candidate was outstanding—bright, experienced, visionary. But he had a form of Asperger’s, and my fellow committee members made some horrible remarks. They said he couldn’t be trusted to represent the library, that he would speak without thinking, and some other critical things about his disability. The Deputy University Librarian just sat there and did not say anything. I spoke up and kept trying to persuade them, but the others dismissed me. It was painful and embarrassing.”
Building an Inclusive Community
Despite the too-common approach of avoiding disabled persons, innovative advocates are creating new models.
A couple of decades ago, I discovered Jean Vanier, a philosopher, theologian, and humanitarian who died earlier this year. For over half a century, he advocated for persons living with developmental and intellectual disabilities, going so far as to establish communities in which they may live full and dignified lives. Vanier’s work began in the early 1960s, when, having moved from his native Canada to France, he visited a psychiatric hospital located in a southern suburb of Paris. He met two men who resided there, and their personal distress and poor living conditions disturbed him. As Vanier put it, they lived walled-off from the world, their humanity unrecognized.
Seeking a way to change their situation and to offer them a more supportive and dignified life, his solution was to welcome these two men into his home and to become their caregiver, which he did in 1964. Soon thereafter, his care for persons with disabilities broadened when he founded a residential community in the same town. He called it L’Arche, which, in English, means The Ark.
Vanier and the L’Arche community offered disabled persons living in institutions a different kind of life, one in which they were treated as full human beings with dignity. Vanier recognized not only their humanity; he also saw their ability to teach us about being human. In particular, he saw that “the weak teach the strong to accept and integrate the weakness and brokenness of their own lives.”[8] Embodying this insight, Vanier devoted his life to building communities of hospitality and support for disabled people and their families all around the world. His work continued until his death earlier this year, at the age of 90. Today, there are 153 L’Arche communities in 38 countries on 5 continents.[9]
Educating and Advocating
Which brings me to Sean Pevsner.
It’s just after Noon when he rolls into the classroom in a wheelchair he controls with his head. The soft hum of the electric motor breaks the otherwise lengthy silence. I can’t tell whether those in the audience are surprised, uncomfortable, or in awe.
Sean was born with severe cerebral palsy. Now in his mid-forties and a civil rights attorney, he is at The University of Texas’ Steve Hicks School of Social Work to kick off a speaker series for Disability Awareness Month. He has difficulty speaking, so his personal aid helps him communicate using a combination of human interactions and technological tools.
Sean’s presentation begins. It’s a video telling his story through images of his life and work. Photos of him in the hospital as a child, going to elementary school, graduating from college and then from law school, and preparing and trying cases flash across the screen, as do shots of him lobbying the Texas legislature on behalf of persons with disabilities. As the video plays, a computer-generated narrator speaks Sean’s words for him.
He recounts obstacles he’s faced and how he got around them. One was when he and his parents fought for the right to attend mainstream classes in the Arlington (Texas) Public Schools, which resulted in him being among the first students with disabilities to do so. He also speaks at length about the hard work it took to convince the Texas Bar Association to let him take the Bar Exam after completing his studies at the UT School of Law. He recounts how, through the years, some attorney colleagues and even judges have dismissed his ability to represent his clients effectively; on several occasions, they even sought to have him removed from cases. The title of his address could not have fit more perfectly with the purpose of this event: “Be Your Own Advocate.”
Afterwards, several people in the audience ask him questions. One person, a UT Law professor, asks how he kept from getting discouraged, especially when practicing law and advocacy in a state that, historically, has not had the political will to fund or provide adequate services to those living with disabilities. This professor even singles out a couple of long-term politicians and their poor records on this front. Many in the audience nod in agreement.
Silence fills the room as Sean thinks for a moment. Then he begins communicating with his aid, who listens to Sean as he types on a device that looked like a large iPad. When they finish, and after checking the accuracy of what he has typed, the aid reads Sean’s response as he smiles with bright eyes and a toothy grin.
“I never back down from a fight.”
Lenses of Strength
The world needs more people like my friend Eric, Jean Vanier, and Sean Pevsner. Living into the fullness of our humanity depends on it.
We might not choose to launch communities such as L’Arche or have to overcome the types of obstacles Sean faces, but we can challenge those who see disabled persons through lenses of deficit to begin seeing through lenses of strength. As Eric did, we can also speak out against discrimination, exclusion, and, perhaps, downright meanness. Like Sean, we can educate people, disabled and non-disabled alike, and bid them to consider new perspectives. As Jean did, we can affirm the dignity of every human being, including those who live with disabilities, and recognize that disabled persons can do many things well and even have unique contributions to make.
I find myself believing that, upon seeing a man with severe cerebral palsy practicing law, Vanier would say, “See! The weak teach the strong!” To which Pevsner might say, “Yes, but the weak are strong, too; and there may be times when we have to fight, for others and ourselves, for what is fair, equitable, and just.”
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[1] https://adata.org/faq/what-definition-disability-under-ada
[2] https://www.cdc.gov/media/releases/2018/p0816-disability.html
[3] https://www.who.int/disabilities/world_report/2011/report/en/
[4] https://www.accenture.com/t20181108T081959Z__w__/us-en/_acnmedia/PDF-89/Accenture-Disability-Inclusion-Research-Report.pdf#zoom=50
[5] ibid.
[6] ibid.
[7] ibid.
[8] Jean Vanier, The Scandal of Service: Washing Jesus’ Feet (New York: Novalis, 1996), 2.
[9] Vanier’s biographical information may be found at http://www.jean-vanier.org.
Photo by RUN 4 FFWPU from Pexels
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, professor of psychiatry in the Dell Medical School. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality. Currently, he is writing a book on counseling people with Parkinson’s disease, which will be published by Oxford University Press.
Follow him on Twitter: @PDWiseBlog