1998 Conference Proceedings

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BREAKING DOWN THE BARRIERS: A CONSUMER PERSPECTIVE

Rick Hohn,
AAC Consultant
Sentient Systems Technology, Inc.
1125 Cottontail Road.
Vista, CA 92083
Phone: 760-598-8336
E-Mail rickstalk@juno.com

It always scares me when I find somebody with a severe communication disorder, like myself, who by no means has developed maximum potential. This is as a result of obstacles standing in his or her way. Instead of a full enriching life, barriers have shriveled living into an almost hopeless state of existence. Without a doubt, I could easily have been in the same boat by being born with cerebral palsy affecting all four limbs and speech. I remember not only my childhood struggles trying to be understood but recall my inertia for participation in various activities. Since my verbal output was very limited, I grew extremely bored in elementary school to the point of becoming numb to the people and things around me. If it hadn't been for positive influences by my parents and others, I am sure that I would still be trapped like the people I see, from time to time, through my work in the AAC field.

Referring to the section on "barriers" in the book "Augmentative And Alternative Communication: Management of Severe Communication Disorders for Children and Adults (Beukelman and Mirenda 1993, Paul H. Brookes Publishing Company)," I offer my perspective in breaking down barriers from personal experiences. For it is not only possible for the individual and his or her support team but is more than worthwhile towards being a success in life. First, here is a description of some barriers that challenged me.

Many seemingly overwhelming barriers were set in my way at an elementary school for the disabled that separated me from my neighborhood friends. Long bus rides to the school across the city limited my time at home. Also, another group of friends had to get used to what I was trying to tell them due to a severe communication disorder. Besides this "policy of segregation" barrier, the school had a practice barrier because it concentrated on therapy rather than my education. In therapy, policy and practice barriers weighed me down with occupational therapists insisting that I must feed myself and write my name using my uncooperative hands. It was a textbook rule -- not to be broken.

In physical therapy, there was another policy barrier. At age eight, I was becoming excited about an inventive way of walking in leg braces. The therapist teaching me this thrilling, functional skill was terminated. The dismissal was a bureaucratic decision based on his miraculous method of teaching a polio victim to walk instead of solely concentrating on patients with cerebral palsy. This devastated me emotionally and I began to spiral downward -- leaving me little desire to try any kind of assisted technology.

Though therapy kept me from spending much time in class, my fourth grade teacher told my parents that I must have been mentally retarded. Fortunately, my parents ignored what the teacher said and remembered a doctor's comment that "although I would never make a watch I would be a contributor to society."

Nevertheless, walls engulfed me with increasing effect when I entered high school. I was tested and placed on the second grade reading level. Apparently seeing my potential, the principal there broke the policy barrier of traditional occupational therapy. He encouraged me to type on a typewriter using a head stylus. By eliminating the practice barrier that once stood in my way, I became successful in typing with a head stylus. Breaking this barrier helped crumble the rest! This not only let me have a source of output but it allowed me to receive information that teachers were giving me. I graduated from high school with honors! Other barriers were overcome by positive approaches, persistence in furthering my education, obtaining augmentative devices and becoming a success in life.

Through discussing barriers in more detail, we will identify them, which is half of the battle. Then we will find positive approaches to finally obliterate them.

Policy barriers:

As seen earlier, textbook rules for therapy erected "policy barriers" and hindered my childhood development.

Opportunity barriers:

Opportunity barriers, according to Beukelman and Mirenda, refers to barriers that "are imposed by persons other than the individual with the severe communication disorder and that cannot be eliminated simply by providing an AAC system or intervention. For example, an individual may be unable to participate at the desired level because of the attitudes of those around him or her, even though an appropriate AAC system has been provided." (Page 107.)

Opportunity barriers are probably the main ones that hindered me. Because of the concentration for therapy, these obstacles were enormous and sadly, still exist today. I didn't get much of a chance to ³learn² in elementary school. This opportunity barrier was torn down when my high school principal eliminated the practice (and policy?) of using my uncooperative hands as. I was free to use my head stylus.

Attitude barriers:

In spite of being successful at communicating with the head stylus, I crashed into another brick wall: an attitude barrier. My father thought that the pointer on my head made me look more debilitating, so he limited me to certain places where I could wear the apparatus. I knew my dad meant well, but I tried to fight his narrow-mindedness. It wasn¹t until I moved away from my parents' house, to a nursing home, that I was free to wear my head device to communicate to people. Later on in years, my dad was finally able to see the benefits of being everywhere and talking with my head stylus.

Another attitude barrier I ran against was the first time I tried to see about an augmentative device. My former wife went into cahoots with a speech therapist by saying that I was lazy about trying to talk and didn't need a communication system. As a result, for years, I had to depend on my wife to interpret the things I was saying because I was considered lazy. Today, many medical and educational funding policies continue to contribute to consumer de-powerment.

Knowledge barriers:

Although I finally received my first couple of communication devices, I didn't use them much because their speech output was less than satisfactory. For years I didn't investigate technology to know that it had advanced. So until I attended the CSUN conference in 1993, I had a "knowledge barrier." I didn't know that assistive technology could now benefit me.

Skill barriers:

Since the DynaVox Original was new on the market, I had a "skill barrier" until my speech pathologist found out how to use the device to teach me about it. This barrier began to fall more when I realize that I could call the manufacturer's technical support team who patiently answered every question that I had about my new piece of equipment. Now, my device is so significant that my life has changed in all areas.

Practice barriers:

While working for Sentient Systems Technology, Inc., I sometimes see these types of barriers when visiting schools. My heart goes out for children who can't take their communication devices home with them simply because policy barriers say that the equipment must stay on the school property. I know a woman who can't take her device to work with her, because the group home where she lives restricts her from taking it from the facility. Yet,some professionals have the audacity to criticize users for not using their systems more.

What can be done to break these barriers down?

Recognizing Barriers:

As eluded to earlier, identifying barriers is half the battle to smashing them so that an individual can develop maximum potential.

Denying that a barrier exists will only cause it to get bigger and stifle personal growth. Guilt or anger often plagues parents with a child having a disability, so they pretend that nothing is wrong with their son or daughter. Recognizing a limitation will bring factual awareness of a disability and best equipment needed for a person with an impairment to lead a full life.

Seeing barriers in proper perspective:

Barriers should be seen in reality - not something bigger than they really are.

While some parents with guilt and anger deny that disabilities and barriers exist, others think that they can't handle the situation. They put their son or daughter in a nursing facility where more obstacles are erected. In most cases, barriers are best minimized in a loving home atmosphere.

A difficulty always seems harder than it looks. A support group can give a proper perspective with goals and recommendation of equipment to meet these challenges.

Positive Motivation:

With proper motivation, anybody can do most things his or her mind sets out to do. The feat that is accomplished is actually secondary to the motivation behind it. It either brings success or failure.

The question should be asked, "Why is a consumer learning to use an AAC device?" If the answer is just to try new equipment on the market, then the attempt will certainly end in a failure with the device winding up on the shelf. If the answer is to help achieve something a consumer wants bad enough, however, then the experience of learning about assisted technology will probably be a giant success.

Learning should be fun:

It should be fun for children learning how to use an AAC device.

Find ways that a user can play games with other kids by using a communication system. Or a teenager will be motivated to talk to a sweetheart. Maintaining employment and increasing job skills were motivating factors behind learning how to use my DynaVox Original.

Encourage problem solving - not anger: The best way to deal with a problem is to create plan to resolve it. Also, having alternate plans help reduce frustrations also.

Not that anger can't help sometimes, but when having a problem look for solutions. Nobody likes dealing with an angry person. Be calm and collected, and find creative ways to overturn a barrier.

Taking time to learn:

A skill barrier can only be overcome by taking time to learn. Take advantage of different opportunities to be educated such as attending conferences or by going to product trainings. Learning doesn't stop after graduating from school.

No communication device can be learned overnight. Be patient and ask for help. Learning is a process. To avoid frustrations, have an old communication system available to use in emergencies. On occasions, diverting to a native language is fine. There is nothing worse than wanting to say something that is important and you can't. Reserve learning for designated times.

Seeing is believing:

Barriers crumble and critics withdraw when they see a person achieve something that previously was thought to be impossible.

It is hard to argue with success. For example, when my occupational therapist saw that I could use my head to type, she had little to stand on to continue to teach me to use my hands. Seeing is believing, and it certainly makes walls come down.

Having a good support team:

Barriers and obstacles get shoved further out of the way when people come in advocating for consumers to reach their goals.

A good unified support team made up of family members, friends, teachers, therapists and manufacturers is a key to success. I wouldn't be where I am today without the support of my parents. However, my parents needed my high school principal to back up their plea for me to communicate any way I could that broke down the barriers.

These suggestions and insights will help obliterate barriers and maximize potential of somebody with a severe communication disorder.

Do you set up barriers or obliterate them?


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