Dr. Bob Segalman
By Luke Hanson
This month, NCHPAD would like to shine a spotlight on one sector of the disability community that is often overlooked: the speech and language disorders and diseases community. According to the American Speech-Language-Hearing Association (ASHA), an individual has a speech disorder when he or she “is unable to produce speech sounds correctly or fluently, or has problems with his or her voice.” An individual is said to have a language disorder when he or she “has trouble understanding others, or sharing thoughts, ideas, and feelings completely,” (ASHA). According to the National Institute on Deafness and Other Communication Disorders (NIDCD), approximately 7.5 million people in the United States have trouble using their voices. Primary conditions such as Parkinson’s disease, cerebral palsy, amyotrophic lateral sclerosis (ALS), multiple sclerosis, muscular dystrophy, and stroke may lead to an individual having trouble with speech and/or language.
It was NCHPAD’s distinct pleasure to discuss this community with Dr. Bob Segalman. At age 70, Dr. Segalman has lived in his entire life with significant cerebral palsy, which has led him to use a power wheelchair and speak in a sub-whisper. Over the course of his illustrious career, he has earned a Ph.D. in sociology and social welfare from the University of Wisconsin in Madison, and worked for 30 years as a sociologist in California. Additionally, he developed the national telephone assistance service for people with speech disabilities, Speech-to-Speech (STS: http://www.speechtospeech.org/), for which the University of Wisconsin awarded him an honorary doctorate. He is currently the full-time pro bono director of Speech Communications Assistance by Telephone (SCT), which promotes and protects STS. You can learn more about Dr. Segalman from his autobiography, located at www.drbobsautobiography.org.
Dr. Segalman began creating STS in 1989. It has grown into a phenomenal, Federal Communications Commission (FCC) mandated service that allows individuals with speech disabilities to communicate via telephone. STS provides trained human revoicers who utilize acute listening skills and computer assistance to understand and relay messages from people with speech disabilities – whether spoken or sent via Augmentative and Alternative Communication (AAC) devices – to whomever they are calling. The service is available toll free, nationwide, 24/7 by simply dialing 7-1-1 and requesting Speech-to-Speech. However, due to a lack of advocacy and dissemination of information regarding the service, STS is only used by about 2,000 Americans. This is in spite of the vast speech disability community.
Dr. Segalman explained that many members of the community, due to both communication barriers and other physical disability conditions, are unable to advocate on behalf of STS and the community as a whole. This has led to a tremendous need for speech language pathologists (SLPs) and other professionals who work with the community and STS to become more active in advocating for the service.
Other individuals can also advocate for the speech disability community and STS services, too. Dr. Segalman implores all readers interested in the community, STS, and advocacy to refer to www.speechtospeech.org to learn more about STS and the community as a whole. Additionally, you can contact STS or Dr. Segalman from the site and ask what you can do to help; current efforts on the part of Dr. Segalman and the STS team include:
- Persuading the FCC to pass regulations to improve STS operators’ performance and consumer training
- Improving state regulations to improve reimbursement to STS providers and, transitively, the quality of STS services in each state
- Creating visual-assisted STS services so operators can see STS users and improve translation of messages
Finally, Dr. Segalman is working with his colleague Dr. BJ Gallagher of McDaniel College to gather additional information regarding communication challenges for individuals with speech disabilities. If you or someone you know has a speech disability, Drs. Segalman and Gallagher would be grateful if you would complete the following survey: https://www.surveymonkey.com/s/VKRLY2B.
Thanks so much for checking out this edition of the Community Spotlight. We are thrilled to have this column back up and running. If there’s a particular issue or entity you’d like us to turn the Spotlight on, don’t hesitate to call (1-800-900-8086) or email (firstname.lastname@example.org) any of us here at NCHPAD.
- “Speech-Language Disorders and the Speech-Language Pathologist.” American Speech-Language-Hearing Association.
- “Quick Statistics.” National Instituted on Deafness and Other Communication Disorders.