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Be Careful What You Say:
Respecting the Privacy Rights, Equity, and Dignity
of Individuals with Special Needs
By Beverley H. Johns
Alpha Phi Chapter, Lambda State
and Mary Z. McGrath
Alpha Pi Chapter, Tau State
“Would anyone who needs the services of a sign language interpreter identify yourself and come forward?” “I have a chair on the bus today.” ”Don’t forget that after school you have an appointment with your counselor at Mental Health.” All of these statements show a lack of sensitivity toward an individual with special needs. All of these statements violate the individual’s right to privacy. Yet these statements were heard over the course of less than a week by the authors. Such violations of the right to privacy are seen everyday. Sometimes they occur because the persons who are making such statements are oblivious or ignorant but perhaps more often because individuals don’t realize the serious impact that such statements make.
This article is written to provide guidance to individuals to think about the innocent statements that they might make that do offend an individual with special needs and indeed violate their right to privacy. Educators, organizational representatives, caregivers, and indeed the general public need to be aware of the negative impact some statements have and the violation of the laws of confidentiality of those statements.
Sign language interpreters
When an individual presiding over a meeting stands up and announces: “Would anyone who needs the services a sign language interpreter identify yourself and come forward? “ the presiding officer is asking an individual who is deaf to identify himself or herself in front of a large group of people by coming forward. Generally when this happens the audience looks around to see who is coming forward. That individual is made to identify himself as deaf or hard of hearing in front of a group of people who have no need to have that information.
What can be done to avoid this situation? Most organizations are required to make accommodations for individuals with special needs. They are obligated to ask in advance whether anyone attending a meeting has special needs. Individuals who have special needs are required to give sufficient notice that they do have special needs. That information is then kept confidential so that only those who need to know are provided with the information. Therefore the organization knows ahead of time that an individual needs a sign language interpreter and should provide the interpreter(s)—with no need to ask publicly that an individual identify himself in front of an audience of people. There are specific state laws or regulations that govern how long an individual can interpret without a break so it may be necessary to have more than one interpreter, depending on the length of the program.
Working with Individuals with Mental Health Needs
When an educator announces to a student in front of his or her peers that his counselor is here to see him, the educator is violating the student’s right to privacy. A statement like: “ Don’t forget that you have an appointment at the Mental Health Center after school” when made in front of others, violates the student’s rights. Statements made publicly like: “Bill you need to go down to the office to get your medication” or “Jessica, did you remember to take your medication this morning?” “Justin, did you have your Ritalin this morning at home? “ announce to those within earshot that the student takes medication—there is no need for other students to have that information.
What should the educator do? Any statements about the mental health needs of the student should be said privately to the student and should not be shared with students and should not be shared with other faculty who have no need to have the information.
Teachers speaking about students with medication or mental health issues must be especially careful not to bring this topic up in the staff lounge as there are often parent volunteers and other staff in that location who are not entitled to this information. In addition, educators must be very careful about student related conversations with private content held in the hall or in a public place such as a store or coffee shop. When staff are engaged in conversation they may be so intent on what they are saying that they will lose sight of the fact that any passerby or patron could hear part of all of their exchange.
Working with Students in Special Education or Needing Accommodations
A parent comes in to the school office and asks for the room location of her son’s friend, Billy Smith . The school secretary replies: “Oh, he is in the special education class.” The secretary has told someone who does not need to know the information that the child has a disability. A parent comes in to observe in a classroom and notices that two students are working with another teacher in the classroom. The parent asks the teacher why the students are getting extra assistance. The teacher replies that the students are receiving services from the special education teacher. The teacher has provided information to an individual who does not need to know that the children have disabilities and need the services of a special education teacher. While visitors in schools quickly learn who is in the special education classroom, school personnel should not provide that information to individuals who do not need to know the information.
What should the school secretary or the teacher say when asked such questions? The secretary in the first instance should say that she cannot provide information about other students to the parent. The teacher should answer that the students are receiving extra assistance.
With the increasing number of individuals with disabilities entering the post-secondary world, there is a need for instructors at that level to exercise caution and sensitivity to those individuals who may be reluctant to identify themselves as having a disability in front of their peers. An instructor in a college class announces “If there is anyone in here who needs special accommodations, please raise your hand.” This instructor has forced the students to identify themselves as individuals with disabilities. The instructor might announce that Joe needs to go to the special needs coordinator to make arrangements for accommodations. This situation again announces that the individual has special needs and violates the individual’s right to privacy.
What should the post-secondary educator do? Request that any student who needs special accommodations should send you an e-mail requesting an appointment for a meeting time. The post-secondary educator should sit down and talk with the student privately about what accommodations are needed and preferred.
Working with Individuals in the Workplace Who Have a Disability
Adults who have difficulty with hearing, organization, visual perception, spelling, processing speed and short term memory, among other things, bring these difficulties to work. The same things that challenged them in school translate to the workplace. When this occurs, the person may want to cover up their issues. They wonder if they can trust their supervisors with their challenges. They need support to find ways to do their jobs with accommodations or to learn ways to support themselves through tasks that challenge them more than a typical worker. It would be wise for workers in these circumstances to contact the organization that champions individuals with their particular challenge to learn ways to adapt and also to communicate with their supervisors about their challenges and their strengths as well.
One of the authors has a good friend who has experienced a unique illness relative to her hearing. Her principal very generously offered her an alternative position in her school that places less strain on her hearing. She is still able to participate but in a way that respects how she can contribute best.
Talking to a Third Party about Individuals with Disabilities As If They Aren’t Present
When children are very young, adults regularly carry on conversations in their presence and do not include the toddlers as they will not understand anyway. Unfortunately such behavior also occurs between adults in the company of other adults. For instance, if an adult is in a wheelchair or has an illness that compromises memory or communication skills in any way, it is a temptation for adults with fuller mental, physical and communication capacities to give up and just communicate around them.
Imagine an adult who uses a wheelchair being pushed by a family member. Another adult approaches and says something like this to the family member in reference to the person within the wheelchair. “How is Jane doing today? Does she like chocolate chip cookies? If so I can bring some of my freshly baked cookies over sometime.” This discounts the person in the chair and keeps them completely out of the loop. Instead, it would give that person dignity and respect to bend down, give them eye contact, greet them, offer some conversation and then ask a direct question. Reading their expression, listening for clues in what they say that is audible will affirm them.
As a last resort one could say something like this. “Jane, I know it is sometimes hard to hear what you are saying. Also there is noise around here that interferes with our communication. I know, Jane, that Joe knows your taste in food better than I do so if it is ok, I am going to ask him about the chocolate chip cookies. “That way the group remains a trio having a conversation and the person with the disability remains included.
Another strategy is to put a hand on the shoulder or arm of the person with a disability when the conversation becomes one-way and then stopping the conversation. It may go something like this. “Jane, please excuse us. We are such big football fans we forgot to include you. Perhaps equal time about golf would work” Then, using eye contact, bring out some news about golf. Keeping the hand on the person’s shoulder when the conversation goes past them signals that those talking know this person is present.
People First Language
The individual who has special needs is an individual first and then an individual with a disability. Rather than saying: “He is an LD adult” or “He is mentally retarded” an individual should respect the individual by saying “He is an adult with a learning disability” or He is an individual with cognitive disabilities.”
Referring to the Person as an Object
Mentioned in the opening paragraph is reference to a statement heard by one of the authors, “I have a chair on the bus today.” A city bus driver transporting a passenger in a wheelchair spoke this over his radio to someone else associated with his transportation company. Speaking in this fashion depersonalizes someone with a disability. It was as if the person and the wheelchair were one and the person was somehow lost in the object at hand. Simply radioing that he had a person with a wheelchair would have afforded the passenger greater respect.
Treating People with Disabilities as if they are Children
When an adult is vulnerable well intentioned individuals may resort to using simplistic terms, sing-song voice tones and even address them inappropriately. For example, speaking to these adults with terms like “honey”, “sweetie” and “cutie” or changing their name to a childlike derivation ( e.g. Mike to “Mickey Mouse” or Ann to “Anna Banana”) deprives them of being perceived as having adult status. How simple it would be to just call someone by their given name and to check out with them or family members what name they are used to being called and addressing the individual accordingly. Treating them as “cute little kids” through word, touch or gesture is unacceptable.
The challenge is to raise them up and to give them as much of the normal and familiar as possible. Inclusion means treating all people as adults. Imagine if a person dressed in business attire walked into a bank and a teller pinched a customer on the cheek or called them “sweetie pie” or “Jonesy” instead of Mrs. Smith or Mr. Jones. All persons deserve the dignity or respectful words and gestures across environments.
Using Inappropriate Humor
Again imagine a vulnerable adult using a wheelchair who had at one point been very active or one who has never had the opportunity to walk. If a staff person working with them or another adult with full physical abilities came up to them and said “Let’s go dancing!” or “How about we play some tennis today?” that person may go along with it and pretend this was funny. But is it? Does this offend someone with no hope of ever doing such activities? Spontaneity is great in many situations, but when relating to persons with disabilities if would be best to stop and think before speaking so as to talk in a way that indicates understanding and respect.
Using Nicknames that are Derogatory
Recently a state special education organization had a keynote speaker who described individuals with significant disabilities as being in a vegetative state. What an inappropriate statement to make in any audience, but even more offensive in an audience of individuals who work everyday with individuals with disabilities. Every individual regardless of the complexity of their disability deserves to be treated with respect and such a reference is never appropriate. Unfortunately the individual’s entire speech was offensive with references to how much it costs to educate children with disabilities and how children with disabilities should not be entitled to special services. Unfortunately this individual was a trainer of administrators—that type of attitude cannot be tolerated by individuals who are charged with educating all children.
Using a Loud Voice with Individuals with Disabilities As if They Can’t Hear
Have you ever noticed that when individuals are talking to a person with a disability, they often talk in a very loud tone of voice as if the individual is unable to hear? Just because an individual has cerebral palsy or utilizes a wheelchair, does not mean that the individual can’t hear. If the person is deaf, it does not help to speak in a loud voice because the individual cannot hear and needs the speaker to utilize the alternative method of communication that is appropriate to meet their individual needs.
Working with Individuals who are on Probation
This particular situation happens in schools where a student in a classroom is visited by his/her probation officer at the school. The teacher receives a phone call from the office or a note from the office that the student’s probation officer is waiting to see him. The teacher announces to the student, within hearing range of the other students, “Johnny your probation officer is waiting to see you in the Principal’s office.” The teacher has just announced to the class that the student has been involved in criminal activities and is on probation. The teacher has violated the student’s right to privacy.
What should the teacher have done to prevent this situation? The teacher could have asked to see Johnny privately and told Johnny that he needed to go to the office. The teacher could have also slipped a note to Johnny to tell him that he had a visitor waiting to see him. The principal or the school secretary could have simply told the teacher that Johnny had a visitor waiting to see him in the office and never mentioned that the visitor was the probation officer.
In Summary
This article has provided you with just a few of the examples of how people may violate the right to privacy and compromised the dignity of individuals with special needs. Each of you can probably add more examples of those violations and occurrences. They happen frequently and should cause us to reflect on the power of our words. All of us often speak without thinking but when it comes to talking about an individual who has special needs we need to think about the ramifications of what we are saying. We need to monitor our own words to assure that we are being respectful and sensitive to the needs and rights of others.
Published in Delta Kappa Gamma Bulletin: International Journal for Professional Educators
Winter 2009, Volume 75-2 © Delta Kappa Gamma Society International
Not to be reproduced
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