Spinal Cord Injury Awareness

Spinal Cord Injury Association
______________________________

of Illinois

1032 S. LaGrange Road - LaGrange, Illinois 60525-2865 - (708) 352-6223 - Fax: (708) 352-9065

E-Mail: SCIInjury@aol.com

Spinal Cord Injury Association of Illinois is a member of Community Health Charities of Illinois. For "Equal-opportunity-choices" in your payroll deduction program contact Mercedes Rauen, Spinal Cord Injury Association of Illinois, 708-352-6223.

Spinal Cord Injury Awareness - Understanding the Importance of Language and Images

Every day more than thirty people become paralyzed from spinal cord injury (SCI) or disease. SCI generally results in one of two types of paralysis:

Paraplegia paralysis affecting the legs and lower part of the body;

Tetraplegia paralysis affecting the level below the neck and chest area, involving both the arms and legs.

The majority of people with SCI use wheelchairs for mobility, thus, they encounter many obstacles and barriers in everyday life. Among the most difficult barriers are those involving the public's misperceptions and attitudes.

Language is a very powerful tool. It can be used not only to communicate ideas, but also to change and shape attitudes. People with all types of disabilities are striving for equality, community accessibility, and acceptance; yet, they are constantly confronted by language, which perpetuates negative stereotypes of who they are and what they are capable of doing.

Using positive language that values and affirms people with disabilities is a first step in helping to change societal attitudes. When a term, such as "victim" or "invalid" is used to describe a person who uses a wheelchair, the listener or reader immediately views the person as an object, not as a human being. The image that comes to mind is a negative one, focused not on the person, but on the disability. These terms do not allow or encourage the reader or listener to see any of the unique aspects of the individual.

When a person sustains a spinal cord injury and is paralyzed, he/she loses the ability to fully use his/her legs and/or arms. He/she does not lose the ability to think, feel, learn, love, work, or to live life to its fullest. There is life after spinal cord injury. SCIA is an organization that is dedicated to helping people adapt to their injury and to live a full and independent life.

It is important to know the appropriate and acceptable terminology to use when writing or speaking about people with SCI. Using proper language is more than just being "politically correct." It helps portray people who use wheelchairs more accurately, raises public awareness about SCI, and helps break down attitudinal barriers and negative stereotypes.

Media Professionals

Media professionals have an ethical responsibility to educate themselves about acceptable terminology and to accurately portray the individuals about whom they are writing or reporting. The media plays a major role in shaping the public image of people with disabilities. The words and images used can either create an accurate, positive view or an insensitive, inaccurate, and negative image.

In an attempt to clarify appropriate terminology, the Associated Press Stylebook contains a section on reporting about people with disabilities. You may wish to use it, along with this fact sheet to help identify more descriptive and acceptable words and phrases.

Portrayal Issues

Sensational stories portraying people with spinal cord injury as helpless victims to be pitied or as courageous, inspirational superhumans may sell newspapers or increase viewing ratings, but they also do a huge disservice to all individuals with SCI.

The vast majority of people with SCI do not wish to be pitied, nor do they consider themselves to be courageous or inspirational for adapting to a situation beyond their control and leading typical, everyday lives. They want to be happy, have a fulfilling career, develop strong friendships, have a romantic, intimate relationship, perhaps have a family, and pursue hobbies and recreational activities. In short, they desire the same things that most other people in our society seek.

Guidelines for Writing about People with Spinal Cord Injury

Do not make the injury the primary focus, unless it is a vital part of the story.
Do not portray ordinary, successful people who use wheelchairs as "superhuman." Most people with SCI lead successful lives. Some people do become elite wheelchair athletes. The focus should be on their athletic prowess, not on the fact that they use a wheelchair.
Do not call a person with a spinal cord injury "courageous" or "inspirational" for adapting to the disability. In essence, this implies that most people would "give up" and "not want to live" if they sustained a SCI. This just isn't true. A non-disabled person may think they would give up if they were injured, but the vast majority of people who sustain SCIs do not give up and go on to live productive lives.
Do not sensationalize a disability or an accident by using terms such as afflicted, crippled, suffers, or victim. While there may be pain and difficulty associated with the accident and some aspects of the disability, a person is not constantly "suffering." These words have very negative connotations associated with them.
Avoid labeling people as part of a group such as "the disabled." Instead, use the phrase "people with disabilities" or "disability community."
Put the person first, not the disability. Use "a person with a spinal cord injury" or "a woman who uses a wheelchair." Focus on the person first, not on a particular functional limitation.
Emphasize abilities, not limitations. Terms such as "uses a wheelchair" or "walks with crutches" are preferred.
Never use emotionally descriptive terms like "unfortunate," "pitiful," or "pathetic." These terms are unnecessary and just sensationalize an injury or illness.

What Is Acceptable Terminology?

Over time, all groups search for an acceptable term to identify themselves. For instance, the term Native American is preferred over the once common, Indian. The preferred term to refer to a person of African heritage has evolved from Negro to Black and now to African-American.

Among people with functional limitations, the term "disability" has become the most widely accepted term. It is an accurate, succinct description, which encompasses most people with physical disabilities.

The term "handicapped" is not widely accepted anymore. The literal definition of a handicap is an obstacle that limits functional ability. A staircase is a handicap to a person who uses a wheelchair. In a completely accessible setting, a person with a disability would not necessarily be handicapped.

Other terms, such as handicapable, physically inconvenienced, physically challenged or differently abled, while attempting to be positive, are often perceived as euphemistic and condescending by the disability community.

Terminology That Is Never Acceptable When Referring To People With Disabilities

Wheelchair Bound, Confined to a Wheelchair

These are among the most offensive terms that can be used to refer to a person who uses a wheelchair. A person is not bound to the chair. He/she uses a chair for mobility, just as a non-disabled person uses his legs for mobility. For a person with a disability, a wheelchair means freedom, mobility, and independence, certainly not something confining.

Victim

This is truly a negative term, which evokes sympathy, helplessness and pity. While a person can be a victim of an unfortunate accident, he/she does not necessarily continue being a victim just because he has a permanent disability.

Patient

This term implies constant illness or sickness. A person with a SCI is only a patient when he/she is in the hospital or doctor's office, just like a non-disabled person. He/she is not necessarily constantly sick or in need of medical attention. Even people with chronic illnesses frequently live active lives.

Cripple, Crippled, Crippling

These are very negative terms, which imply inferiority and should never be used.

Normal

The appropriate term for a person without an apparent disability is "non-disabled" or "a person without a disability." A person with a SCI who uses a wheelchair is not abnormal. He may do some things differently, but that does not make him less than normal.

Disability Awareness

What do you say to someone who uses a wheelchair?

"It is nice to meet you." "Hi, how are you today?" "Did you see that terrific movie last night?" "Isn't the weather great!"

When you meet a person who uses a wheelchair, remember you are meeting a person, not the wheelchair. There is no need to feel any more awkward, fearful or self-conscious than you would when you meet a non-disabled person.

Facts

Spinal cord injuries are not contagious.
A person who uses a wheelchair knows he/she uses a wheelchair and knows that you know they use a wheelchair. Don't make an issue of it, but also don't try to pretend you don't notice.
SCI is, for the most part, permanent; thus a person with a SCI is usually not just sitting around waiting for a miracle cure.
A person with a SCI would prefer to emphasize what they can do, just as you would.
SCI is a condition, not a personality trait. People who use wheelchairs have a wide range of personality traits.
The fact that a person uses a wheelchair is not the most important thing about him/her, just as a person's hair color is not the most important thing.
People with SCI can and do have sex.
People who use wheelchairs are employable.

A Few Things To Keep In Mind When Interacting With A Person With A Disability

When you see a person in a wheelchair attempting to do something that appears difficult, ask if he needs help before you try to assist him/her. If you are unsure of the best way to help, ask him what you should do. Remember that getting in and out of a car is something a person in a wheelchair does everyday, thus this is not a particularly difficult activity. Do not be offended if the person refuses your offer of assistance. Independence is important to everybody.
Speak directly to the person in a wheelchair, not to the person's companion or personal care attendant. This is true even if the conversation is being carried out through an interpreter.
Offer to shake hands with the person with a disability, even if he has limited hand dexterity or a prosthetic limb.
Don't try to steer away from common expressions like, "Let's run over to the store" "How do you stand on that issue?" or "Can you walk me through the procedure?" These are not puns or put downs unless you intend it that way.
Don't stare or bluntly ask, "What is wrong with you?" However, if your child happens to ask such a question, don't get too upset. Most people with disabilities understand that children often say exactly what they are thinking and are more than happy to give them accurate information about the disability. It can be a valuable learning experience for your child.
A wheelchair is part of a person's intimate space, just like his clothes; don't lean on or push a person's wheelchair without asking first. If the person transfers from the wheelchair to a chair or sofa, don't move the wheelchair out of reach.
If you are going to have a lengthy conversation with someone in a wheelchair, pull up a chair to make yourself and the neck muscles of the other person more comfortable.
Don't pat someone (over the age of five years) on the head; this gesture of affection is patronizing.

A wheelchair is part of a person's intimate space, just like his clothes; don't lean on or push a person's wheelchair without asking first.

Glossary of Terms

Congenital Disability: A disability that has existed since birth, but is not necessarily hereditary.

Developmental Disability: Any mental or physical disability with an onset before age 22.

Diagnosis: The process of identifying a disease or injury. People are not diagnosed; illnesses and injuries are diagnosed.

Disability: A functional limitation that interferes with a person's ability to perform activities of daily living. It may refer to a physical, mental, or sensory limitation.

Disease: A specific illness. Sometimes a disease, such as polio, may cause or contribute to a disability. However, a person with a disability does not necessarily have a disease.

Empathy: Understanding, not sympathy or pity.

Handicap: A condition or barrier imposed by the environment, society or one's own self, which interferes with a person's ability to do something. A staircase is a handicap to a person who uses a wheelchair.

Hemiplegia: Complete or partial paralysis, which affects one side of the body. It may or may not involve the face and/or trunk muscles.

Impairment: The diminishment of ability, but not its total loss.

Orthotic (Orthoses): A brace or other device that provides support to an extremity.

Paralysis: A loss of sensation and/or muscle function caused by disease or injury to the nerves, brain, or spinal cord.

Parapalegia: A disability resulting in complete or partial paralysis of the lower part of the body.

Patient: A person who is in a hospital or in a doctor's office for specific treatment.

Prosthetic (Prostheses): Usually an artificial extremity, such as an arm or a foot.

Quadriplegia (Tetraplegia): A disability resulting in complete or partial paralysis of all four extremities. It usually implies an injury to the spinal cord at or below the first cervical vertebra or an injury to the brain (less than four paralyzed limbs is usually referred to as tetraplegia).

Rehabilitation: An organized program of medical and clinical treatment designed to maximize residual physical, perceptual, and cognitive abilities following injury or illness.

Spasm: Sudden involuntary movement of muscles. This often occurs in quadriplegia and paraplegia.

Spinal Cord Injury: Damage to the spinal cord, resulting from trauma, disease or vascular injury. In a complete spinal cord injury, no sensation or function exists below the level of injury.

Terminology and Word Usage

Preferred	Acceptable	Never Acceptable
Person with a disability/ Person with a spinal cord injury	Disabled person	Crippled, handicapped, differently abled, handicapable, invalid, abnormal, special
Person who uses a wheelchair	Wheelchair user	Wheelchair bound Confined to a wheelchair
People with disabilities	Disability community	The disabled
Sustained an injury/ Was injured/Was involved in an accident	An injured person He/she is spinal cord injured	Suffers from, victim of, afflicted with, stricken with, poor, unfortunate, pitiful, pathetic
Congenital disability		Birth defect, deformed, disfigured
He/she has quadriplegia He/she has paraplegia He/she has paralysis	He/she is quadriplegic He/she is paraplegic	He/she is a quadriplegic He/she is a paraplegic
He/she is a patient in the hospital He/she is sick		A spinal cord injury patient (he/she is only a patient if currently in the hospital or doctor's office)
Person without a disability	Non-disabled person	Normal person, able-bodied
He/she has spasticity	His/her muscles are spastic	He/she is spastic
He/she has a spinal cord injury. He/she lives with a spinal cord injury. He/she is a survivor	He/she has adapted to his/her disability	He/she overcame his/her disability (people overcome social, economic, psychological, attitudinal, architectural, and employment barriers, not disabilities)

Spinal Cord Injury Association ______________________________