Giving speech to the voiceless
The mainstream list of disabilities rarely includes the inability to speak. However, there are an estimated 968 residents of Kennebec County who have severe communication impairments, according to Barbara Cunningham, director of the advocacy group Kids with Disabilities Included.
Cunningham’s organization, based in Arlington, Virginia, estimates that in the United States, there is an average of one person per two square miles who is unable to speak. The U.S. Census reported that the population of Kennebec County was 121,090 in 2009.
“There are many causes for speech impairments: developmental apraxia, autism, Parkinson’s disease, football injuries and other trauma that lead to encephalopathy, muscular dystrophy, multiple sclerosis, cerebral palsy and many others, including some rare disorders that are acquired or genetic,” Cunningham wrote in a letter to the Echo.
Much of the time however, individuals who are affected by a speech impairment are not aware of the exact causes of their disabilities. “By the first grade, roughly five percent of children have noticeable speech disorders; the majority of these speech disorders have no known cause,” the National Institute on Deafness and Other Communication Disorders (NIDCD) reports on their website.
Communication disabilities can range from stuttering or problems with articulating to a complete inability to speak vocally.
“Humans express thoughts, feelings and ideas orally to one another through a series of complex movements that alter and mold the basic tone created by voice into specific, decodable sounds,” the NIDCD reports.
Consequently, speech impairments that prevent persons from vocalizing effectively can be extremely limiting. National organizations such as Everyone Communicates advocate for those who are affected and “[work] to disseminate information on the topic of how many persons there are who are virtually silent, cannot speak effectively and need access to technology to communicate,” Cunningham said.
In a January 2011 report from the National Disability Rights Network (NDRN), the group found that there are significant inequalities in the wages and the participation of people with disabilities in the workplace.
“For decades we have worked to ensure federal laws guarantee the right of people with disabilities to live and work in their chosen communities,” Curt Decker, executive director of NDRN, said in a press release. “Yet our investigation found that many people with disabilities are still being segregated and financially exploited.”
For those who struggle with impaired speech, it is necessary to communicate using augmentative and alternative communication (AAC) and electronic devices. “People with severe speech or language problems rely on AAC to supplement existing speech or replace speech that is not functional,” the American Speech-Language-Hearing Association reports. “Special augmentative aids, such as picture and symbol communication boards and electronic devices, are available to help people express themselves. This may increase social interaction, school performance and feelings of self-worth.”
Cunningham’s interest in communication disabilities stems from three decades of working as a special needs educator and from her son’s struggle with a speech impairment. Sean Sokler, Cunningham’s son, started as a distance learner from the University of Southern Maine and ultimately graduated in 2005 from George Mason University with a Bachelor’s Degree in psychology and a minor in history. He uses the iPad regularly as an alternative communication method, benefiting from the newest advances in technology.
Cunningham worries that there is not enough general knowledge about alternative devices that can give a voice to those who cannot physically speak.
“Many have neither the training nor the machines necessary to communicate effectively - to communicate their needs, thoughts and feelings,” Cunningham said. “Their families, doctors, teachers and friends may not know about AAC methods and how powerful they can be in helping a speechless person to communicate. Without someone to advocate for her or him, the person with a severe speech impairment may be unable to gain access to AAC.”
There are also misconceptions that a disability suggests that the affected person is disadvantaged intellectually. Cunningham notes that this is far from the case. “Many persons who were previously considered intellectually disabled have been able to communicate well when given access to communication devices,” she said.
For those who are interested in learning more, the International Society for Augmentative and Alternative Communication (ISAAC) is already making plans to host its biennial conference in Pittsburgh in July to August 2012. Closer to the Hill, the Center for Community Inclusion and Disability Studies at the University of Maine at Orono continues to work in the local community to spread information and to promote the rights of the disabled within the state.