Miss-Delectable
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Advocate breaks the silence on disability rights
Do I seem like a dangerous person or just a frustrated person?" Richard McGann asked after explaining his flaps with bureaucracies that cannot or will not provide the accommodations his deaf-blindness requires.
"I want people to understand that I am friendly. I get so tired of the negativity of people who do not understand deaf-blindness. Sometimes I do explode."
Mr. McGann, 54, is a big man. His spoken words, though not always easy to understand, are sometimes louder than expected, his gestures sometimes intense. But he hardly seems dangerous.
He and I had been exchanging e-mails for a couple of weeks about the problems deaf-blind people experience with bus drivers, police officers, hospitals and other service providers.
Now we are sitting at the kitchen table in his Brookline home, and I am discovering what it means when a person's most important sense is touch. "I have 10 ears and 10 eyes," Mr. McGann explains. "On my fingertips."
Seated with us is a sign language interpreter who spells my words into Mr. McGann's right hand. He, in turn, spells his thoughts into hers so she can speak them. Although the situation is strange and new for me, the conversation flows quickly and smoothly.
But here the conditions for communication are ideal. That's not always the case for Mr. McGann and others for whom American Sign Language is a primary language. When Mr. McGann is in a new situation and a trained interpreter is not available, communication must be cobbled together. Mr. McGann communicates primarily through touch, and for some people, that will be outside the comfort zone.
Mr. McGann bumps up against that comfort zone as a frequent rider on ACCESS, the door-to-door shared-ride service for seniors and people with disabilities sponsored by the Port Authority of Allegheny County. Mr. McGann is well known to ACCESS because of his frequent complaints about service.
Not just complaints about mistakes, like being dropped off at the wrong location, something he says happened four times in one year, but persistent grievances, such as drivers who refuse to communicate in the manner he prefers or who handle him in a perfunctory way, such as buckling his seatbelt around both him and his briefcase.
"Some drivers are wonderful, but some have an attitude problem," he says.
If a driver wants to get his attention, Mr. McGann prefers a touch on the shoulder, not just any type of contact. If a driver needs to tell him something, he would like the person to use palm printing, which means using one's index finger to spell letter-by-letter into another person's palm. Some drivers will not do it.
Without the ability to speak to drivers, Mr. McGann has, at times, attempted to physically guide the person through the motions of helping him correctly. This has led some drivers to file complaints of physical harm against him.
He's fond of many drivers, especially one who not only prints a greeting into his palm but shares information about road conditions and how many more people remain to be picked up. But he's maddened by another driver who ignores his requests for information. "[The driver] doesn't understand that people on the bus who can see or hear know what is going on, but for a deaf-blind person, we never know what is happening ahead."
Holly Dick, community liaison for ACCESS, says she has spent "hours and hours" dealing with Mr. McGann's complaints over the years, mainly through e-mail, which is an efficient way for the two of them to communicate.
Ms. Dick is sympathetic to Mr. McGann's issues; she herself has vision impairment and is trained as a rehabilitation counselor. At the same time, she knows that ACCESS drivers, who are contracted from eight different companies, are often in a hurry. She wishes Mr. McGann would not regard their lapses as personal affronts.
All drivers, she said, are trained about different types of disabilities and to help riders according to what they need. But drivers can't be expected to be experts in deaf-blindness or any other type of disability, she said.
Yet ACCESS has made several changes in service in response to Mr. McGann's complaints, she said. All drivers now receive a pamphlet explaining deaf-blindness and carry a "communication book" in Braille and large print with common statements used by drivers and riders. They also wear "touchable" badges that display the driver's name in Braille.
Ms. Dick says that she can't force drivers to do palm-printing and acknowledges that some are reluctant to touch a rider's hand. "I often tell people, 'Disability is not contagious.' "
"But I also tell our drivers that I know where Richard McGann is coming from. Deaf-blindness is the most isolating situation. It is frustrating."
Deaf-blindness is a rare condition, affecting about 350 people in the Pittsburgh metropolitan area. The Helen Keller National Center for Deaf-Blind Youth and Adults maintains a registry of 11,000 deaf-blind individuals in the United States but says the number of people with the condition may actually range from 40,000 to 1.25 million if people with partial impairment in both senses, such as those who are losing vision and hearing as they age, are included.
"It's a very small population but with a tremendous need of services," said Stephen Barrett, president and CEO of Blind and Vision Rehabilitation Services of Pittsburgh and former executive director of the Helen Keller center, based in New York. "As someone who is totally deaf and blind, Richard is even more rare. Many people who are deaf-blind have some vision or hearing."
Mr. McGann grew up on Mount Washington, the youngest of four children and the only one to be affected by a genetic condition called Usher syndrome. Individuals with the syndrome have some degree of hearing impairment as well as retinitis pigmentosa, a condition in which black pigment covers the cells of the retina, causing a gradual loss of vision. Usher syndrome is the most common cause of deaf-blindness.
Mr. McGann has been profoundly deaf since birth and began losing his vision in his early childhood years. He became completely blind 12 years ago.
He attended DePaul School for Hearing and Speech, a school that encourages oral speech. There, he says with a laugh, he and other classmates secretly taught themselves American Sign Language, which became his preferred method of communication, along with Braille.
He later earned a degree in general studies at the Boyce campus of Community College of Allegheny County and went to New York to receive training in independent living at the Helen Keller center.
For more than 30 years, Mr. McGann has worked at the Western Pennsylvania School for Blind Children, most recently as a Braillist, translating print into Braille. For 17 years, he taught courses in the sign language interpreting training program at CCAC until the program closed a few years ago. He is active in local disability rights efforts, including the City of Pittsburgh-Allegheny County Task Force on Disabilities.
At home and at work, Mr. McGann uses a wide variety of technology that is available to people who are deaf, blind or both, such as a relay phone and a computer with Braille display.
Professionals who are familiar with the needs of people who are deaf-blind say the biggest barrier in the community is communication. For example, people who meet Mr. McGann for the first time may recognize immediately that he is blind, but not that he is deaf.
"Deafness is an invisible disability," he explained. "People don't understand the situation. They think, 'OK, you're blind, but you can hear.' Well, no, I can't."
For people who are completely deaf-blind, a sign language interpreter is usually the most appropriate accommodation. In emergency situations, it is absolutely essential. Mr. McGann says it galls him when police and other emergency personnel balk at using a sign language interpreter, a cost of $65 per hour, with a two-hour minimum.
"People always assume it is unfair, that money doesn't grow on trees," said Mr. McGann, "but it is not fair for them to say that we are expensive people. This hurts a lot."
Online conversations about deaf-blind issues contain numerous tales of situations gone bad because of officials' reluctance to request a sign language interpreter. A posting from one woman told of waiting 10 hours in an emergency room for a sign language interpreter, finding out only then that doctors were treating her for a suspected heart attack.
Mr. McGann often quotes the late Helen Keller, the 20th-century writer and social activist who was deaf-blind. "Helen Keller said that people who are deaf-blind are the loneliest people on earth," says Mr. McGann. "Blindness cuts us off from things, but deafness cuts us off from people."
Mr. McGann says this is his reality, even though he is often surrounded by many who care about him. His wife of 16 years, the former Karen Ahern, died from complications of Hodgkin's disease in 2001. "She was my eyes and ears," he says.
"The biggest problem for people who are deaf-blind is lack of understanding," said Sister Michelle Grgurich, director of the Department for Persons with Disabilities for the Catholic Diocese of Pittsburgh, and a friend of Mr. McGann.
"Communication is a challenge, with great potential for misunderstanding. Patience is also an issue. You have to take time to do what they need, but the world moves so fast and people don't have time. Then there's fear, just like there is about most disabilities.
"People who are deaf-blind can do a lot, but they have to rely on many people. Their trust has to be high. But once the connection is made, a new door is opened and what you can see is amazing."
Do I seem like a dangerous person or just a frustrated person?" Richard McGann asked after explaining his flaps with bureaucracies that cannot or will not provide the accommodations his deaf-blindness requires.
"I want people to understand that I am friendly. I get so tired of the negativity of people who do not understand deaf-blindness. Sometimes I do explode."
Mr. McGann, 54, is a big man. His spoken words, though not always easy to understand, are sometimes louder than expected, his gestures sometimes intense. But he hardly seems dangerous.
He and I had been exchanging e-mails for a couple of weeks about the problems deaf-blind people experience with bus drivers, police officers, hospitals and other service providers.
Now we are sitting at the kitchen table in his Brookline home, and I am discovering what it means when a person's most important sense is touch. "I have 10 ears and 10 eyes," Mr. McGann explains. "On my fingertips."
Seated with us is a sign language interpreter who spells my words into Mr. McGann's right hand. He, in turn, spells his thoughts into hers so she can speak them. Although the situation is strange and new for me, the conversation flows quickly and smoothly.
But here the conditions for communication are ideal. That's not always the case for Mr. McGann and others for whom American Sign Language is a primary language. When Mr. McGann is in a new situation and a trained interpreter is not available, communication must be cobbled together. Mr. McGann communicates primarily through touch, and for some people, that will be outside the comfort zone.
Mr. McGann bumps up against that comfort zone as a frequent rider on ACCESS, the door-to-door shared-ride service for seniors and people with disabilities sponsored by the Port Authority of Allegheny County. Mr. McGann is well known to ACCESS because of his frequent complaints about service.
Not just complaints about mistakes, like being dropped off at the wrong location, something he says happened four times in one year, but persistent grievances, such as drivers who refuse to communicate in the manner he prefers or who handle him in a perfunctory way, such as buckling his seatbelt around both him and his briefcase.
"Some drivers are wonderful, but some have an attitude problem," he says.
If a driver wants to get his attention, Mr. McGann prefers a touch on the shoulder, not just any type of contact. If a driver needs to tell him something, he would like the person to use palm printing, which means using one's index finger to spell letter-by-letter into another person's palm. Some drivers will not do it.
Without the ability to speak to drivers, Mr. McGann has, at times, attempted to physically guide the person through the motions of helping him correctly. This has led some drivers to file complaints of physical harm against him.
He's fond of many drivers, especially one who not only prints a greeting into his palm but shares information about road conditions and how many more people remain to be picked up. But he's maddened by another driver who ignores his requests for information. "[The driver] doesn't understand that people on the bus who can see or hear know what is going on, but for a deaf-blind person, we never know what is happening ahead."
Holly Dick, community liaison for ACCESS, says she has spent "hours and hours" dealing with Mr. McGann's complaints over the years, mainly through e-mail, which is an efficient way for the two of them to communicate.
Ms. Dick is sympathetic to Mr. McGann's issues; she herself has vision impairment and is trained as a rehabilitation counselor. At the same time, she knows that ACCESS drivers, who are contracted from eight different companies, are often in a hurry. She wishes Mr. McGann would not regard their lapses as personal affronts.
All drivers, she said, are trained about different types of disabilities and to help riders according to what they need. But drivers can't be expected to be experts in deaf-blindness or any other type of disability, she said.
Yet ACCESS has made several changes in service in response to Mr. McGann's complaints, she said. All drivers now receive a pamphlet explaining deaf-blindness and carry a "communication book" in Braille and large print with common statements used by drivers and riders. They also wear "touchable" badges that display the driver's name in Braille.
Ms. Dick says that she can't force drivers to do palm-printing and acknowledges that some are reluctant to touch a rider's hand. "I often tell people, 'Disability is not contagious.' "
"But I also tell our drivers that I know where Richard McGann is coming from. Deaf-blindness is the most isolating situation. It is frustrating."
Deaf-blindness is a rare condition, affecting about 350 people in the Pittsburgh metropolitan area. The Helen Keller National Center for Deaf-Blind Youth and Adults maintains a registry of 11,000 deaf-blind individuals in the United States but says the number of people with the condition may actually range from 40,000 to 1.25 million if people with partial impairment in both senses, such as those who are losing vision and hearing as they age, are included.
"It's a very small population but with a tremendous need of services," said Stephen Barrett, president and CEO of Blind and Vision Rehabilitation Services of Pittsburgh and former executive director of the Helen Keller center, based in New York. "As someone who is totally deaf and blind, Richard is even more rare. Many people who are deaf-blind have some vision or hearing."
Mr. McGann grew up on Mount Washington, the youngest of four children and the only one to be affected by a genetic condition called Usher syndrome. Individuals with the syndrome have some degree of hearing impairment as well as retinitis pigmentosa, a condition in which black pigment covers the cells of the retina, causing a gradual loss of vision. Usher syndrome is the most common cause of deaf-blindness.
Mr. McGann has been profoundly deaf since birth and began losing his vision in his early childhood years. He became completely blind 12 years ago.
He attended DePaul School for Hearing and Speech, a school that encourages oral speech. There, he says with a laugh, he and other classmates secretly taught themselves American Sign Language, which became his preferred method of communication, along with Braille.
He later earned a degree in general studies at the Boyce campus of Community College of Allegheny County and went to New York to receive training in independent living at the Helen Keller center.
For more than 30 years, Mr. McGann has worked at the Western Pennsylvania School for Blind Children, most recently as a Braillist, translating print into Braille. For 17 years, he taught courses in the sign language interpreting training program at CCAC until the program closed a few years ago. He is active in local disability rights efforts, including the City of Pittsburgh-Allegheny County Task Force on Disabilities.
At home and at work, Mr. McGann uses a wide variety of technology that is available to people who are deaf, blind or both, such as a relay phone and a computer with Braille display.
Professionals who are familiar with the needs of people who are deaf-blind say the biggest barrier in the community is communication. For example, people who meet Mr. McGann for the first time may recognize immediately that he is blind, but not that he is deaf.
"Deafness is an invisible disability," he explained. "People don't understand the situation. They think, 'OK, you're blind, but you can hear.' Well, no, I can't."
For people who are completely deaf-blind, a sign language interpreter is usually the most appropriate accommodation. In emergency situations, it is absolutely essential. Mr. McGann says it galls him when police and other emergency personnel balk at using a sign language interpreter, a cost of $65 per hour, with a two-hour minimum.
"People always assume it is unfair, that money doesn't grow on trees," said Mr. McGann, "but it is not fair for them to say that we are expensive people. This hurts a lot."
Online conversations about deaf-blind issues contain numerous tales of situations gone bad because of officials' reluctance to request a sign language interpreter. A posting from one woman told of waiting 10 hours in an emergency room for a sign language interpreter, finding out only then that doctors were treating her for a suspected heart attack.
Mr. McGann often quotes the late Helen Keller, the 20th-century writer and social activist who was deaf-blind. "Helen Keller said that people who are deaf-blind are the loneliest people on earth," says Mr. McGann. "Blindness cuts us off from things, but deafness cuts us off from people."
Mr. McGann says this is his reality, even though he is often surrounded by many who care about him. His wife of 16 years, the former Karen Ahern, died from complications of Hodgkin's disease in 2001. "She was my eyes and ears," he says.
"The biggest problem for people who are deaf-blind is lack of understanding," said Sister Michelle Grgurich, director of the Department for Persons with Disabilities for the Catholic Diocese of Pittsburgh, and a friend of Mr. McGann.
"Communication is a challenge, with great potential for misunderstanding. Patience is also an issue. You have to take time to do what they need, but the world moves so fast and people don't have time. Then there's fear, just like there is about most disabilities.
"People who are deaf-blind can do a lot, but they have to rely on many people. Their trust has to be high. But once the connection is made, a new door is opened and what you can see is amazing."