Communication is of vital importance to all human beings. Communication is defined as the process by which information is exchanged between individuals through a shared system of symbols, language, signs, or behavior. Everyone has the need to communicate, to express choice, to convey pleasure or displeasure, to be heard and seen as a person. It is something that almost every individual is able to do in some way, no matter what the physical, sensory, or mental disability. However, it is usually more of a challenge for individuals with mental retardation to communicate successfully with others and they may experience additional difficulty if they have a hearing or visual impairment. For example, an individual who has severe mental retardation and is also legally blind will have faced many challenges in acquiring language and communication skills–both due to his disabilities and to the attitudes of others. When an individual cannot talk, and especially if he also has mental retardation, people may not bother to talk to the person. They may assume the person will not understand what they say.
We all learn language as infants and children through interacting with other people and exploring the world around us. People with mental retardation and other developmental disabilities often have fewer chances to interact and explore. This directly affects their development of language and other communication skills. Many people with sensory impairments (such as visual or hearing impairments or autism) in addition to mental or physical challenges are unable to communicate through speech or sign language. These individuals may understand what people communicate to them and have the desire to respond appropriately. However, they may have trouble expressing themselves to others due to their mental or physical challenges. An individual, for example, with cerebral palsy may actually be quite intelligent, but be physically unable to speak clearly due to the physical challenges of cerebral palsy. People with these difficulties may use alternative methods to communicate. They may use gestures, vocal sounds, eye contact, body movements, or facial expressions to get their message across. These alternate methods of communication are called “non-symbolic.” Non-symbolic interactions require the listener to (1) understand that the individual is trying to get across a message, (2) understand the message, and (3) respond back to the individual. Unsuccessful communication occurs when the non-disabled person doesn’t recognize or respond to the way the person with disabilities communicates. Since communication involves at least two people, it is important for staff to pay attention to improving the interactive process between themselves and the individuals they support. Individuals who communicate in non-symbolic ways (not using language or signs) need means to express their likes and dislikes, make choices, ask for things, and show displeasure or unhappiness. The usual way such communication occurs is through the individual’s movements and behaviors. The role of behaviors in communication will be reviewed later in this section.
What Can You Do?
1. Pay close attention to any gestures, facial expressions, vocalizations, and movements used by the people you support. Talk to your co-workers and compare notes. Are the same words, sounds, movements used when the person seems pleased? Does she use the same gesture or movement close to mealtimes and something different when there’s lots of noise in the house?
2. Talk to your team members about the chances of getting the help of a speech therapist who has experience in both symbolic and non-symbolic communication.
3. Talk to the individual’s parents, siblings, and friends. If they’ve known and lived with the person for years, chances are they understand his communicative efforts quite well.
Communicating with Individuals
No matter how the individual communicates, there are a few basic rules that should be followed whenever you are interacting with a person who has mental retardation:
1. Don’t shout!
Some people with mental retardation are hearing impaired, but most aren’t. Speak in a normal tone of voice.
2. Talk directly to the person.
Don’t talk about the individual when he’s in the room. Don’t talk to a family member or coworker when seeking information about the individual’s preferences, needs, or concerns unless it’s to add to what you’ve learned directly from the individual. Make eye contact, and make sure you have the individual’s attention.
3. Communicate with the person according to his/her age.
Don’t use baby talk or a childlike voice when speaking to adults. Talk or communicate about adult topics. If communicating with a child, focus on age appropriate topics.
4. Be flexible and patient.
If you normally talk very rapidly, slow down a little. Don’t repeat yourself without allowing the person some time to respond. Some people, especially individuals with autism, take much longer to process what you just said. Be patient. Rephrase something – “try another way” of communicating information if you don’t feel the person understands you.
5. Don’t order – ask!
You are employed to assist the individuals you support, not the other way around! Ask them to perform a task, invite them to participate in an activity–treat them with respect, regardless of age or ability. Do not talk or act like a parent with the individuals you support – you are not their parents; you are a peer. Do share information about yourself in an appropriate way — as you would with other coworkers or acquaintances. Maintain a respectful, but professional relationship.
Like yourself, you will find that persons with mental retardation and other developmental disabilities respond more positively when treated with respect and consideration. Often an individual’s receptive language (ability to understand what’s said to him) may exceed his expressive language (ability to communicate verbally with others). Sometimes it’s the other way around. Take your time to communicate, rephrase if necessary, and use a positive and age-appropriate tone of voice.
Communicating with Family Members
As staff in a program for persons with mental retardation, you will interact with the parents and other family members. They deserve the same respect as the individuals you’re supporting. Unless an individual has specifically requested that parents or family members not be involved in his life, it is usual to invite family members to individual planning meetings, program celebrations, and other significant events in the individual’s life. Parents and other family members are usually important, valued members of the individual’s life. They are also usually very knowledgeable about the individual’s likes and dislikes, communication styles, health needs, and history.
Agree to Disagree
As staff, you will play a very different role in an individual’s life than his parents. Parents naturally protect their children, and the parents of children with mental retardation are particularly prone to this. From an early age, they must advocate for services for their child, occasionally having to battle “the system.” Like all parents, they don’t wish to see their children hurt and may have had to shield their children from the unwitting cruelty or ignorance of others. Their family life, their marriage, their other children have all been affected by the demands and, hopefully, the joys of caring for a child with disabilities. They may have cared for their family member for thirty to forty years before she enters the program where you work. They deserve a voice in the individual’s continued care. As professionals, your goal is to assist the individual to be as independent as possible and to have opportunities to participate in the community. Parents may be fearful that this is too stressful for the individual. They may assume correctly that you don’t know their family member well and then may incorrectly assume you are overestimating his capabilities. Listen to their point of view! Your primary responsibility is to assist in the individual’s growth and ability to control and participate in the environment. Respect the family’s opinions but don’t underestimate what people can accomplish. Accept that you may sometimes disagree with family members and it may become emotional. However, if staff maintain a respectful approach and listen to the ideas offered by family members, much can be learned and more can be accomplished over time.
What’s Your Role?
1. Listen! You may learn something that will help you in your work with the individual.
2. Respect the family members’ opinions, experiences, concerns – but don’t let it overshadow your respect for the individual and the possibilities for his life.
The Effect of Your Choice of Language
Language has an extremely powerful influence over ideas and attitudes. Your choice of words in speaking to and about the people you support is very important to how they perceive themselves and how others see them. Many members of the public have had very little contact with persons with mental retardation. What you say, as someone who supports people with disabilities daily, will most certainly affect the attitudes of others. Earlier in this workbook, we discussed the importance of treating individuals with mental retardation and other developmental disabilities in a respectful way. The importance of seeing the person first – apart from the disability – was emphasized. It is more appropriate to say “individuals with mental retardation” than “those MRs.” The latter statement lessens the individuals. It emphasizes disability over humanity. The phrases “those MRs” or “autistic people” or even “MR people” reduces the individuals to their handicaps and sets them apart from others. It emphasizes “differentness” rather than sameness. The effect on someone who has never met a person with a disability is to create more distance and discomfort. Recognizing common interests, experiences, or needs –similarities to others — creates connections. The phrase “a person with mental retardation” downplays the disability. It says, “He is a person first.” It encourages a more approachable image in the mind of someone who may already have fears or mistaken ideas about persons with disabilities.
What Can You Do?
1. Be mindful of using respectful language when you speak to and about the people you support.
2. Write and say “persons with . . . (disability)” instead of “those MRs,” “the deaf,” “the blind,” etc. Don’t mention the disability at all if it’s not necessary.
3. Model age appropriate and positive communication at all times.
4. Gently redirect doctors, store personnel, restaurant workers, and others who communicate with you to speak instead to the individual who’s being examined, making a purchase, or ordering a meal. If the person is nonverbal, and your assistance is needed to aid in communication, allow her to retain as much control and participate in the interaction as possible. For example, if the person’s receptive language is excellent, you may say, “Please speak directly to her. She will understand you.”
The Role of Behaviors in Communication
It is important to understand that behaviors, particularly undesirable behaviors (for example hitting, spitting, yelling,) may actually be an individual’s attempt to communicate. The inability to make themselves understood is a major cause of frustration and challenging behavior in some individuals with disabilities. Knowing what you want and being unable to express it to others in a meaningful manner is an endless battle for people with limited or poor expressive skills. It is your responsibility as staff to identify and develop an appropriate means to help the individuals you support express themselves. Just knowing what upsets an individual is not enough. Planning to avoid such situations, as well as assisting people in learning how to deal with life stresses and with learning appropriate ways to express themselves is an important part of your job. Later in your training, you will be exposed to different strategies for assisting people in communicating effectively. It is important to recognize the impact a person’s background may have on his communication style. We know that persons with disabilities who have been institutionalized often develop behaviors which are harmful to others or even themselves as a means of attracting attention or getting out of an unpleasant situation. Hitting, spitting, and biting require staff attention or can get someone out of an activity he doesn’t want to do; sitting quietly and rocking back and forth in front of the television set usually does not. People who use negative behaviors to communicate will need time and your guidance to develop alternative (new and positive) behaviors for communicating their needs or wants. You will learn more about strategies for providing positive behavioral supports in a later section of this workbook and training.
What Can You Do?
1. Think about the purpose an individual’s behavior may serve. Is she trying to tell you she’s frustrated, in pain, bored? Observe and compare notes with your coworkers.
2. Remember that a person (particularly someone new to your program) may have learned that negative behaviors attract staff attention. Try to consciously reward positive behaviors with your time and attention.
3. Be a detective. Sometimes what may look like the individual is just wanting your attention is really his attempt to communicate that he just wants to be left alone. Assume first that he’s trying to tell you something, not that he’s “being bad.”
4. Respect that meaningful communication is something all individuals need in order to express themselves and have some control over their environments.
5. Think about how you’d feel if you were unable to speak or write and had to develop another means of communication.