This post is adapted from Yun Li’s doctorate dissertation, Effective Disability Ministry Practices at Local Church, pp. 14-19.
Disability
Disability is a complex and contested concept that often causes contention among different interest groups as it carries different meanings in different communities. As a result, there are multiple definitions of disability. Some people see disability through the lens of science and medicine and focus on managing or correcting the disability. Others see disability as a social construct and believe factors such as prejudice, discrimination, exclusion, and systemic barriers prevent people with disabilities from fully participating in society. Whether these attitudes or barriers are deliberate or not, the social environment is what leads to disability. The focus, then, is to remove barriers and make accommodations allowing people with disabilities full participation in society.
There are many categories of disabilities: physical, psychological, cognitive, sensory, neurological, psychiatric, developmental, and intellectual. Some disabilities can be clearly seen, but some are hidden. Some can be managed through medicine or behavioral intervention, but some cannot. Some remain stable, but some may regress over time. Some are present from birth, but some may occur later in life. Some restrict an individual’s ability to perform daily living activities, but some do not. Many individuals also have multiple disabilities. Individuals with disabilities have their own stories to tell because there are many variations regarding their functional states and experiences. It is difficult to identify a common concept that can adequately characterize all of them.
According to The World Health Organization (WHO), “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.”
The International Classification of Functioning, Disabilities, and Health (ICF) was developed by WHO to classify health and disability. As shown in the following diagram, ICF is based on the “biopsychosocial model.” It recognizes that disability is a complex phenomenon that reflects the interactions between individuals, their health conditions, and their environments.
What does the word “disability” mean to those whose lives have been impacted by disabilities?
“If I regarded my life from the point of view of the pessimist, I should be undone. I should seek in vain for the light that does not visit my eyes and the music that does not ring in my ears. I should beg night and day and never be satisfied. I should sit apart in awful solitude, a prey to fear and despair. But since I consider it a duty to myself and to others to be happy, I escape a misery worse than any physical deprivation.” — Helen Keller
As a disabled man, let my life be a reflection of the endless amount of ability that exists in each and everyone of us — Robert M. Hensel
We, the ones who are challenged, need to be heard. To be seen not as a disability, but as a person who has and will continue to bloom. To be seen not only as a handicap, but as a well intact human being — Robert M. Hensel
Autistic people are individuals. We are not all math geniuses; we don’t all like trains. I am hopeless with technology and much prefer painting. There is no ‘typical Autistic.’ But I think we probably all like being respected and validated. — Jeannette Purkis
Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates, or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. — Ellen Notbohm
Special Needs
The term special needs has become a popular euphemism for disability in recent years. The origin of the term is uncertain. Sharon Shapiro-Lacks, founder of Yad HaChazakah—The Jewish Disability Empowerment Center, suggested that special needs is a term drawn from Special Olympics and Special Education, both established in the 1960s. Despite its popularity, the term often confuses the general public and offends people with disabilities. Many needs of people with disabilities are not special but essential to every human being. Just like everyone else, people with disabilities need to eat, move about, and communicate. People with disabilities need to feel they belong, and they need to love and be loved. They may need extra effort and additional assistance to meet those needs because of their disabilities, but it does not make the needs any more “special.” Saying it differently does not change the fact; it only perpetuates the stigma about disability.
The Disability Language Style Guide, developed by National Center on Disability and Journalism, advises against using the term “special needs.” It points out that “the word ‘special’ in relationship to those with disabilities is now widely considered offensive because it euphemistically stigmatizes that which is different.” The American Psychological Association Style Guidelines admonishes writers to avoid using condescending euphemisms such as “special needs, physically challenged, handi-capable” when describing people with disabilities because “many people with disabilities consider these terms patronizing and inappropriate.”
Disability is a civil rights term that provides legal protection for individuals with disabilities under the Americans with Disabilities Act. Individuals with Disabilities Education Improvement Act entitles children with disabilities, not children with special needs, to receive public education. The term “disability” offers protection to individuals with disabilities when they are denied access to work, education, or society without cause, but the term “special needs” does not.
In her book, Claiming Disability: Knowledge and Identity, author and disability activist Simi Linton argues that the term “special needs” is rarely used by disabled activists and scholars but is boosted by paternalistic do-gooders. Other disability advocates share the same sentiment. June Isaacson Kailes indicates that the disability community views the term “special” as an offensive euphemism that signifies “differentness and apartness.” She considers the term “vague, patronizing, inappropriate, and distancing.” Though the term “special needs” has gained popularity among parents, service providers, and community leaders, Shapiro-Lacks contends that masking the term “disability” behind “special needs,” advertently allows the stigma attached to having a disability to continue. She argues that if people with disabilities feel ashamed or embarrassed for having a disability and avoid the term “disability,” they cannot expect others to show them high regard. Shapiro-Lacks further points out that the term “special needs” often evokes feelings of anxiety, pity, or antipathy in people to meet those needs. As a result, it hinders the effort of the disability community “to fight needless pity and to become empowered members of the communities.” Moreover, by referring to individuals with disabilities as “special needs people,” we put the spotlight on the “specialness of their needs,’ on their neediness” (Linton 51). Instead of seeing them first as a whole person, we first see their needs. Even worse, we see them as deficient, as a burden. Therefore, Shaprio-Lacks vehemently opposes the use of “special needs” and urges people to embrace the term “disability.” A 2013 BBC survey identified ten disability-related words that are most offensive to people with disabilities. The word “special” ranked number four, only barely after pejoratives like “retard” and “spastic.”
An empirical study conducted by Gernsbacher et al. examined the effectiveness of the term “special needs” in replacing the word “disability.” The research found that “special needs” is an ineffective euphemism (1) regardless of whether the persons being described are children, college students, or middle-aged adults, and (2) even to those who have personal connections to the disability. The researchers conclude that “special needs” is an ineffective euphemism and recommend against using the term.
Meriah Nichols, a mother who is deaf and has a daughter with Down Syndrome, wrote in her blog, “Disability does not need to be a dirty word. It does not need to be something to be embarrassed or ashamed of. Rather, it holds the potential to a power to see and experience the world in a completely different way.”