You Talking About Me? – Disability as a Personal, Social, and Political Construct
“Sticks and stones can break my bones, but names can really hurt me” was the slogan on an ad depicting a child with Down Syndrome in the 1990s. Since then, debates surrounding the impact of labels, the definition of disability, and who has the power to diagnose and label have only gotten more intense.
“When you have met one person with autism, you have met one person with autism” was a phrase that grew out of the autistic community to challenge the assumption that all people with autism are the same. In the worlds of disability, what often follows this assumption is what Harold Wilke (a pioneering clergyman in the disability rights movement and the movement for welcoming congregations) calls the “sin of negative spread.” People who use wheelchairs are often shouted at because they are assumed to be deaf as well as unable to walk.
The recent revision of the Diagnostic and Statistical Manual of Mental Disorders stirred a political, medical, and psychological controversy because the new definition of autism in the manual’s fifth edition no longer includes some people once on the autism spectrum. The impact is personal, social, and political because of the fear that some children or adults may no longer be eligible for services. Individuals with autism and their families, like other families with children with disabilities, get caught in what could be called a “schizophrenic” bind of two identities: they, their teachers, and their supporters are encouraged to focus on the gifts and strengths of every person rather than on the deficits. However, both paradoxically and somewhat perversely, in order to gain eligibility for important services like early intervention or the right kind of education, families and individuals have to now magnify the deficits and needs to attain services.
What’s in a Name?
Definitions and diagnoses are simply never static. What used to be “scientific” terms—like “imbecile,” “idiot,” and “retard”—are now pejorative labels. Currently evolving, though, are some key foundational trends that have great promise for more humanizing and just attitudes and practices.
The International Classification of Functioning, Disability and Health of the World Health Organization envisions disability as an umbrella term describing the interplay between an impairment, environment, and social context. A disability is defined in three levels: 1) a genetic cause, trauma, or accident or other impairment that 2) leads to an activity limitation that results from the impairment (e.g., not being able to walk because of spinal cord injury) but also is impacted by 3) physical and social environments and contexts of architecture and/or attitude that limit participation. This definition describes the interplay between an impairment, environment, and social context and moves disability from a medical model to a social model.
James Thompson, the current president of the American Association on Intellectual and Developmental Disability, summarizes the implications of the social model succinctly in his 2013 presidential address, which was published in the Journal of Intellectual and Developmental Disabilities, Vol. 51, No. 6:
To be useful [italics mine] professionals must strive to:
- Understand each person holistically, with particular sensitivity to the fact that all people have relative strengths to go along with relative impairments.
- Focus professional efforts on arranging personalized supports that bridge the gap between any limitations in personal competency and the demands of settings and activities.
- Recognize that empowering people with disabilities to live full lives in their communities not only enhances the quality of life of people with disabilities but also enables the general population to experience the contributions and richness that people with disabilities provide to their communities.
The implications of these new definitions are enormous. They move disability away from a single focus on deficit and cure and toward a recognition that disability, limitation, and difference are a part of everyone’s life.
Extensive scholarly work is now being done in revisiting scriptural and theological traditions through the lens of disability. The implications of traditional religious and theological understandings of disability can support our social model definition of disability.
The Leviticus injunction “Do not curse the deaf or put a stumbling block in front of the blind, but fear your God. I am the LORD” is a commandment not so much about the act as the attitude. A deaf person could not hear a curse, nor a blind person see the imposed barrier, but God sees and hears the intention and attitude as well as the act.
We are all “created in the image of God,” an image of strengths, gifts and responsibilities. Rabbi Joshua ben Levi said: “A procession of angels passes before each person, and the heralds go before them, saying, ‘Make way for the image of God!’” (Deut. Rabbah, 4:4).
Healing happens in physical and social environments. In biblical traditions, especially Christianity, there has been a frequent connection between sin, faith, disability, and healing. Far too many people with disabilities and their parents have heard versions of “What did you do that God sent you this disability?” or “If your faith were strong enough, you could be healed.” (My favorite story about a response to the latter was from a man with a disability who told the speaker, “If your faith were strong enough, you could cure me!”)
The social model of disability might assert that any “sin” that causes disability is a collective one, e.g., pollution that causes birth defects or non-accessible environments that prevent participation. Then, if we want to “heal” or mitigate the impact of disability, we ought to focus on attitudinal and access barriers. We may not be able to fix an impairment, but we can certainly do something about its impact, our attitudes, and environmental context.
Who should have the power to make decisions about diagnoses and labels? Theologically, the power to name comes from God in the first chapters of Genesis, a power passed on to humans as a core responsibility: “So out of the ground the Lord God formed every animal of the field and every bird of the air, and brought them to the man to see what he would call them; and whatever the man called every living creature, that was its name” (Genesis 2:19. Revised Standard Version).
The power to name and order is also a reflection of the power of the namer. Descriptions and diagnoses usually come from the medical or human services community. I remember a poignant moment at a national conference on self-determination when a plenary session included a “Boston Tea Party,” with individuals tossing from the lecturn images and words they did not like as self-advocates, such as “I am not a case, and I don’t want to be managed.” Does a society that focuses increasingly on human services need an expanding number of special conditions, diagnoses, and labels in order to justify the validity of service systems? In his book The Future of the Disabled in Liberal Society: An Ethical Analysis, Dutch theologian and ethicist Hans Reinders asserts that no matter what a modern liberal society says about the dignity and equal rights of people with disabilities, people with intellectual disabilities will end up as second-class citizens because of the core liberal values of freedom, reason and choice.
Thus, how do we as people and professionals engage with terminology and labels and respectfully interact with people with disabilities? Are we then, in other words, “disabled” in our capacity to relate to people with disabilities?
If you want to know what to call someone, start with their name. Identity is a multifaceted phenomenon, one where all kinds of qualities and characteristics make up who we are. In introductory conversation, most of us don’t start off with descriptions of our deficits or limitations but rather interests, passions, qualities, memberships, culture, affiliations, and roles.
A general “people-first language” rule should be implemented to use any label of disability as an adjective rather than a noun. Instead of saying “the blind,” for example, say, “a person who is blind.” It’s a rule that most major newspapers violate for editorial and space reasons so that terms like “the disabled” and “the mentally ill,” are in front of us daily.
It should be noted that some people with disabilities prefer to transform a negative label by claiming it as a positive part of their identity, reframing the label as a part of identity and culture. That’s especially true for the deaf community, and increasingly so for many people who claim “autistic” as central to their identity.
If you are uncertain about how someone wants to talk about his or her disability, assuming that is necessary, ask what language they prefer to use, or how they reference it. Check out this website if you want more guidance. “Nothing about me without me” is one of the predominant slogans of the disability rights movement. Honoring that injunction speaks volumes about attitude, intent, and equality.
The implications go far beyond disability to issues facing democracy and society. We build communities on the basis of diverse individual and communal gifts and strengths; we build service systems on the basis of deficits, needs and helping systems. Being part of any given community or congregation, with the opportunities, benefits, rights, and responsibilities that that entails, is clearly the value held most highly by most people with disabilities and their families.
Parker Palmer (2011) outlines “Five Habits of the Heart that Help Make Democracy Possible,” habits we have to learn to practice to move beyond the divisive and polarizing effects of making difference into “other.” They are:
- An understanding we are all in this together.
- An appreciation of the value of otherness.
- An ability to hold tension in life-giving ways.
- A sense of personal voice and agency.
- A capacity to create community.
Inclusive attitudes and practices toward people with disabilities can teach us the same lessons. The issues, ultimately, are relevant and important to all of us. In the mid 1970s I was Protestant Chaplain at Newark State School, one of New York’s old institutions. During a discussion about the public backlash to one of the first group homes in the community, Donna Smith, a young woman with cerebral palsy and resident there, once asked me, “When will normal people learn to accept handicapped people in the same way that handicapped people have to learn to accept normal people?” Newark State School is now closed but I have been trying to answer that question ever since.
(This web-only article is part of a special series associated with Tikkun’s Fall 2014 print issue: Disability Justice and Politics. Subscribe now to read these subscriber-only articles online, and sign up for our free email newsletter to receive links to future web-only articles on this topic, as well! Visit http://www.tikkun.org/disability to read the other web-only articles associated with this issue.)