People with hearing loss are often treated as second class citizens. Some of this treatment is intentional, but much of it is due to lack of awareness by the general hearing public. This treatment is evident in many aspects of their lives, and result in a variety of issues that are important to the hearing loss community. We will examine the topics listed below. But first, you might be interested to read some of the benefits of deafness, as presented by a panel of late-deafened folks.
Access refers to the ability to take advantage of all the resources that we encounter in our normal lives. This includes entertainment, information, and social resources.
Oral Communication is the BIG ISSUE for most hard of hearing, late deafened, and oral deaf people, because it is a fundamental capability that pervades a person's entire life. Communications problems increase the complexity and difficulty of many areas of a person's life.
Emergency Planning refers to the process of determining how emergencies will be dealt with. As you might imagine, people with hearing loss are often left out of the process, which means that their needs are ignored.
Employment is a source of many issues for people with hearing loss. There are issues with getting a job and keeping a job. Something as fundamental as getting essential information can become extremely difficult.
Family is generally a source of support, encouragement, and comfort. This is also the situation for many people with hearing loss. Unfortunately, many others don't have that kind of relationship with their family. Many hard of hearing, late deafened, and oral deaf people report significant issues with members of their family.
Hearing Aid Affordability is increasingly becoming a significant issue among people with hearing loss. As the cost of hearing aids skyrockets, fewer people are able to afford the aids that can help them retain personal communications. Fortunately, there is a growing movement to include hearing aids in insurance coverage.
Identity issues are common among people with hearing loss. They often consider themselves to be hearing people who can't hear. A few are able to successfully integrate into the culturally Deaf community, but the vast majority see themselves stuck between the hearing world and the Deaf world, and involved in neither.
Isolation is a frequent result of hearing loss. Movies, plays, and concerts may no longer be accessible. Chatting with friends can become frustrating and unrewarding, and the person with hearing loss may withdraw further into their shell.
Services, or the lack thereof, are a source of frequent complaint among the hard of hearing, late deafened, and oral deaf people. Because their disability is generally invisible, they are often overlooked by organizations that provide services to disabled groups.
Other Issues is where we put all the issues that don't fit nicely into one of the categories above!
back to "New to Hearing Loss"
~~~~~~~~~~~~~~~~~~~
July 2002 - The 2002 SHHH National Convention included a Research Symposium that explored current research into issues affecting people with hearing loss. To find out what areas are being investigated and what the outcomes are, this is a must read.
September 2004 - Ever thought about the BENEFITS of deafness? We're always talking about issues, but it might be good to stop for a minute and consider the benefits. Here's Cheryl Heppner's report on an ALDAcon discussion on the benefits of deafness.
October 2004 - There's a national agency called Protection and Advocacy whose mission is to advocate for people with disabilities. If you don't know about these folks, you should learn. Here's a report on a recent presentation on Protection and Advocacy.
October 2004 - Ever thought about what you'd do if a disaster struck your area? Are there special preparations that people with hearing loss should make? For answers to these and other questions, here's a report on a Disaster Preparedness workshop from the 2004 SHHH National Convention.
December 2004 - Suppose you were a participant in a sporting event and you were told that you couldn't wear your hearing aid or cochlear implant while competing! Impossible, you say? You might want to read this unbelievable story before deciding.
December 2004 - Here's a great story that does a wonderful job of exploring many of the issues faced by folks with hearing loss.
December 2005 - Hearing loss is a significant problem at any age; it may have an even larger impact on older folks than on younger ones. Laine Waggoner's wonderful article explores some of the reasons why.
~~~~~~~~~~~~~~~~~~~
The Benefits of Deafness
By Cheryl Heppner
September 2004
Editor: Deafness has benefits, you say? It may be a tough concept for some, but the thoughts of the folks in the ALDAcon panel may change your mind. This has been a bad year for us, conference-wise. Thanks to Cheryl for her usual great job of sharing what goes on at these wonderful gatherings.
~~~~~~~~~~~~~~~~~~~
Shawn Lovley put together a panel of late-deafened people for ALDAcon today to talk about the benefits of acquired deafness as opposed to the frustrations. I was one of the panelists and enjoyed the experience of hearing from the others. I thought you might enjoy it too.
Shawn Lovley enjoys not having to listen to telemarketers and rap music. He also is grateful for all the great people he's met through the Association of Late-Deafened Adults
Carolyn Piper said that the experience of being deaf helps her to reinvent and become a different person -- "Pain is God's reset button." She cited Helen Hayes, who after the death of her husband, commented that for a long time she was "crazy as a loon" and should have been locked up in a straitjacket in a padded room. Hayes realized she had a choice, craziness and grief or a happy life, and the choice of which path she took was up to her.
Mark Dessert always saw himself as an average good guy but found himself on a new journey and developing a new identity because of deafness. It pushed him into a new field, forced him to confront his fears, and he now has really good friends who care about him.
Lori Heir has learned to be confident in her deafness and to advocate for herself. She is now involved in life, and likes that deafness makes her more unique. Once a very, very shy person, she learned to appreciate and value communication because of her hearing loss and now loves to challenge her limitations. She also loves helping others with hearing loss, learning sign language, and teaching other people about deafness to clear up their misconceptions. The absurd things that happen because of her hearing loss give her more occasions to laugh.
Dr. Roy Miller had a long list of benefits, which he broke into categories: - He gets a peaceful night's sleep each and every night because noises don't bother him -- loud parties, dogs barking, thunder and lightning, the patter of rain, sirens, snoring, etc. - He is less afraid or anxious because he can't hear sounds like music in horror movies, footsteps behind him on a dark street, creaking floors, cars backfiring. - In cities he is less stressed because he doesn't have to contend with annoyances like horns honking, the roar of traffic, babies crying in a restaurant, the clatter of subway trains, and loud rock music in night clubs. - When traveling his experiences are more easy and worry-free because he doesn't hear jet engines, and he gets to board planes first. He also pointed out that people in France sound just like people in Russia so he knows no linguistic boundaries. - His driving is more relaxing because he doesn't hear car horns honking at him, noisy mufflers, motorcycles roaring past, the wind gushing past an open window, and passengers' comments about his driving. - He feels he is more focused and productive at work because he doesn't hear copy machine operations, phones ringing, air conditioners blasting, fluorescent lights humming, gossip, and noises from other offices. - There are perks like sitting closer to the front at large gatherings because you need to see the interpreter, and the free Golden Eagle Passport for lifetime admission to all national parks.
I said "ditto" to all the comments of the previous panelists and added to their lists three things I appreciate about deafness: - The ability to concentrate and maintain intense focus - Enjoying small things I would not have appreciated, especially the ability to see music in movement -- the way a gifted interpreter can create it with signs, the rhythm of waves crashing, the rise and fall of a bird's chest as it sings. - After years of needing to observe people intently, often knowing when what they say does not match what they are thinking and feeling.
(c) 2004 by Northern Virginia Resource Center for Deaf and Hard of Hearing Persons (NVRC), www.nvrc.org.
~~~~~~~~~~~~~~~~~~~
ALDA San Diego Presentation: Protection & Advocacy
October 2004
The San Diego ALDA group recently had the pleasure of a presentation by Val Vera, a Legal Advocate for Protection and Advocacy, Inc. (P&A). P&A is a national public interest, not-for-profit organization with four offices in California - Los Angeles, Oakland, Sacramento, and San Diego.
P&A is a federally mandated and funded program for persons with disabilities. They provide a variety of services including voting programs, mediation services, advocacy, complaint investigation, education, referrals, and outreach. Note that the state organizations may adopt different names. To contact the appropriate organization in your state, and for additional information on P&A, please visit their website at http://www.napas.org/.
The federal government requires a P&A organization in every state and provides about 80% of the organization's funding; the remaining 20% comes from the states and donations. The reliable funding streams allow P&A to provide their services to people with disabilities without charge.
The folks at P&A are happy to discuss individual situations, but there are restrictions on the cases they will take on. The first requirement is that the client must have a disability, and the situation in dispute must be disability-related. So a disabled client who is evicted for non-payment of rent would not be eligible for P&A representation, because the situation in question is not disability-related.
A second requirement for P&A involvement is that the client must have a valid case, i.e. there must be a legal requirement for the other party to do what you asked. For example a request for CART for a church service would not be a valid case, because the Americans with Disabilities Act (ADA) specifically exempts churches from the communications access requirements.
In determining which cases to accept, P&A also considers the ability of clients to advocate for themselves, and they must also consider the ability of their organization to accept additional commitments. With a paid staff of about 15 persons, and with responsibility for four southern California counties with a population of several million people, the San Diego office is stretched pretty thin.
Two of P&A's areas of focus are abuse and neglect (often in institutions) and anti-discrimination activities. This second category includes employment, housing, transportation, special education, and benefits (e.g., Social Security and Medicare issues).
Questions and Answers
Q. I was recently asked to serve on a jury. When I notified the court that I was hard of hearing and would require CART, they offered an interpreter. Despite my explanations that an interpreter would do no good because I don't know sign language, they refused to provide CART, so I wasn't able to perform jury duty. Is that a situation you could have helped with?
A. Yes, that's a pretty clear case. The courts have a legal responsibility to provide effective accommodations. In your case, that means CART.
Q. I had a friend who had laser surgery that caused her to become blind in one eye. She wasn't disabled before the surgery, but is now. Would P&A get involved in that situation?
A. Probably not, but not because of the timing of her becoming disabled. We don't get involved with medical malpractice, criminal cases, or family law.
Q. A friend of mine applied for SSDI. He has several disabilities. He has applied for job after job after job, and keeps getting turned down. I'm pretty sure it's because of his disabilities. But he was also turned down for SSDI! I couldn't believe it! Would you help him?
A. That's a sad situation, and not uncommon. But we don't get involved in SSDI eligibility. If you'd like to advocate for him, I'd suggest that you get the Social Security Green Book and find the wording that they use as SSDI justification for your friend's disabilities. Then have his doctor use those words or very similar ones in a letter of support.
Q. What is the statute of limitations for filing a discrimination complaint?
A. It depends on the law that was violated - various laws have various time periods. The shortest period I know of is one year, so if you file within a year, you should be safe.
Access refers to the ability to take advantage of all the resources that we encounter in our normal lives. This includes entertainment, information, and social resources.
Oral Communication is the BIG ISSUE for most hard of hearing, late deafened, and oral deaf people, because it is a fundamental capability that pervades a person's entire life. Communications problems increase the complexity and difficulty of many areas of a person's life.
Emergency Planning refers to the process of determining how emergencies will be dealt with. As you might imagine, people with hearing loss are often left out of the process, which means that their needs are ignored.
Employment is a source of many issues for people with hearing loss. There are issues with getting a job and keeping a job. Something as fundamental as getting essential information can become extremely difficult.
Family is generally a source of support, encouragement, and comfort. This is also the situation for many people with hearing loss. Unfortunately, many others don't have that kind of relationship with their family. Many hard of hearing, late deafened, and oral deaf people report significant issues with members of their family.
Hearing Aid Affordability is increasingly becoming a significant issue among people with hearing loss. As the cost of hearing aids skyrockets, fewer people are able to afford the aids that can help them retain personal communications. Fortunately, there is a growing movement to include hearing aids in insurance coverage.
Identity issues are common among people with hearing loss. They often consider themselves to be hearing people who can't hear. A few are able to successfully integrate into the culturally Deaf community, but the vast majority see themselves stuck between the hearing world and the Deaf world, and involved in neither.
Isolation is a frequent result of hearing loss. Movies, plays, and concerts may no longer be accessible. Chatting with friends can become frustrating and unrewarding, and the person with hearing loss may withdraw further into their shell.
Services, or the lack thereof, are a source of frequent complaint among the hard of hearing, late deafened, and oral deaf people. Because their disability is generally invisible, they are often overlooked by organizations that provide services to disabled groups.
Other Issues is where we put all the issues that don't fit nicely into one of the categories above!
back to "New to Hearing Loss"
~~~~~~~~~~~~~~~~~~~
July 2002 - The 2002 SHHH National Convention included a Research Symposium that explored current research into issues affecting people with hearing loss. To find out what areas are being investigated and what the outcomes are, this is a must read.
September 2004 - Ever thought about the BENEFITS of deafness? We're always talking about issues, but it might be good to stop for a minute and consider the benefits. Here's Cheryl Heppner's report on an ALDAcon discussion on the benefits of deafness.
October 2004 - There's a national agency called Protection and Advocacy whose mission is to advocate for people with disabilities. If you don't know about these folks, you should learn. Here's a report on a recent presentation on Protection and Advocacy.
October 2004 - Ever thought about what you'd do if a disaster struck your area? Are there special preparations that people with hearing loss should make? For answers to these and other questions, here's a report on a Disaster Preparedness workshop from the 2004 SHHH National Convention.
December 2004 - Suppose you were a participant in a sporting event and you were told that you couldn't wear your hearing aid or cochlear implant while competing! Impossible, you say? You might want to read this unbelievable story before deciding.
December 2004 - Here's a great story that does a wonderful job of exploring many of the issues faced by folks with hearing loss.
December 2005 - Hearing loss is a significant problem at any age; it may have an even larger impact on older folks than on younger ones. Laine Waggoner's wonderful article explores some of the reasons why.
~~~~~~~~~~~~~~~~~~~
The Benefits of Deafness
By Cheryl Heppner
September 2004
Editor: Deafness has benefits, you say? It may be a tough concept for some, but the thoughts of the folks in the ALDAcon panel may change your mind. This has been a bad year for us, conference-wise. Thanks to Cheryl for her usual great job of sharing what goes on at these wonderful gatherings.
~~~~~~~~~~~~~~~~~~~
Shawn Lovley put together a panel of late-deafened people for ALDAcon today to talk about the benefits of acquired deafness as opposed to the frustrations. I was one of the panelists and enjoyed the experience of hearing from the others. I thought you might enjoy it too.
Shawn Lovley enjoys not having to listen to telemarketers and rap music. He also is grateful for all the great people he's met through the Association of Late-Deafened Adults
Carolyn Piper said that the experience of being deaf helps her to reinvent and become a different person -- "Pain is God's reset button." She cited Helen Hayes, who after the death of her husband, commented that for a long time she was "crazy as a loon" and should have been locked up in a straitjacket in a padded room. Hayes realized she had a choice, craziness and grief or a happy life, and the choice of which path she took was up to her.
Mark Dessert always saw himself as an average good guy but found himself on a new journey and developing a new identity because of deafness. It pushed him into a new field, forced him to confront his fears, and he now has really good friends who care about him.
Lori Heir has learned to be confident in her deafness and to advocate for herself. She is now involved in life, and likes that deafness makes her more unique. Once a very, very shy person, she learned to appreciate and value communication because of her hearing loss and now loves to challenge her limitations. She also loves helping others with hearing loss, learning sign language, and teaching other people about deafness to clear up their misconceptions. The absurd things that happen because of her hearing loss give her more occasions to laugh.
Dr. Roy Miller had a long list of benefits, which he broke into categories: - He gets a peaceful night's sleep each and every night because noises don't bother him -- loud parties, dogs barking, thunder and lightning, the patter of rain, sirens, snoring, etc. - He is less afraid or anxious because he can't hear sounds like music in horror movies, footsteps behind him on a dark street, creaking floors, cars backfiring. - In cities he is less stressed because he doesn't have to contend with annoyances like horns honking, the roar of traffic, babies crying in a restaurant, the clatter of subway trains, and loud rock music in night clubs. - When traveling his experiences are more easy and worry-free because he doesn't hear jet engines, and he gets to board planes first. He also pointed out that people in France sound just like people in Russia so he knows no linguistic boundaries. - His driving is more relaxing because he doesn't hear car horns honking at him, noisy mufflers, motorcycles roaring past, the wind gushing past an open window, and passengers' comments about his driving. - He feels he is more focused and productive at work because he doesn't hear copy machine operations, phones ringing, air conditioners blasting, fluorescent lights humming, gossip, and noises from other offices. - There are perks like sitting closer to the front at large gatherings because you need to see the interpreter, and the free Golden Eagle Passport for lifetime admission to all national parks.
I said "ditto" to all the comments of the previous panelists and added to their lists three things I appreciate about deafness: - The ability to concentrate and maintain intense focus - Enjoying small things I would not have appreciated, especially the ability to see music in movement -- the way a gifted interpreter can create it with signs, the rhythm of waves crashing, the rise and fall of a bird's chest as it sings. - After years of needing to observe people intently, often knowing when what they say does not match what they are thinking and feeling.
(c) 2004 by Northern Virginia Resource Center for Deaf and Hard of Hearing Persons (NVRC), www.nvrc.org.
~~~~~~~~~~~~~~~~~~~
ALDA San Diego Presentation: Protection & Advocacy
October 2004
The San Diego ALDA group recently had the pleasure of a presentation by Val Vera, a Legal Advocate for Protection and Advocacy, Inc. (P&A). P&A is a national public interest, not-for-profit organization with four offices in California - Los Angeles, Oakland, Sacramento, and San Diego.
P&A is a federally mandated and funded program for persons with disabilities. They provide a variety of services including voting programs, mediation services, advocacy, complaint investigation, education, referrals, and outreach. Note that the state organizations may adopt different names. To contact the appropriate organization in your state, and for additional information on P&A, please visit their website at http://www.napas.org/.
The federal government requires a P&A organization in every state and provides about 80% of the organization's funding; the remaining 20% comes from the states and donations. The reliable funding streams allow P&A to provide their services to people with disabilities without charge.
The folks at P&A are happy to discuss individual situations, but there are restrictions on the cases they will take on. The first requirement is that the client must have a disability, and the situation in dispute must be disability-related. So a disabled client who is evicted for non-payment of rent would not be eligible for P&A representation, because the situation in question is not disability-related.
A second requirement for P&A involvement is that the client must have a valid case, i.e. there must be a legal requirement for the other party to do what you asked. For example a request for CART for a church service would not be a valid case, because the Americans with Disabilities Act (ADA) specifically exempts churches from the communications access requirements.
In determining which cases to accept, P&A also considers the ability of clients to advocate for themselves, and they must also consider the ability of their organization to accept additional commitments. With a paid staff of about 15 persons, and with responsibility for four southern California counties with a population of several million people, the San Diego office is stretched pretty thin.
Two of P&A's areas of focus are abuse and neglect (often in institutions) and anti-discrimination activities. This second category includes employment, housing, transportation, special education, and benefits (e.g., Social Security and Medicare issues).
Questions and Answers
Q. I was recently asked to serve on a jury. When I notified the court that I was hard of hearing and would require CART, they offered an interpreter. Despite my explanations that an interpreter would do no good because I don't know sign language, they refused to provide CART, so I wasn't able to perform jury duty. Is that a situation you could have helped with?
A. Yes, that's a pretty clear case. The courts have a legal responsibility to provide effective accommodations. In your case, that means CART.
Q. I had a friend who had laser surgery that caused her to become blind in one eye. She wasn't disabled before the surgery, but is now. Would P&A get involved in that situation?
A. Probably not, but not because of the timing of her becoming disabled. We don't get involved with medical malpractice, criminal cases, or family law.
Q. A friend of mine applied for SSDI. He has several disabilities. He has applied for job after job after job, and keeps getting turned down. I'm pretty sure it's because of his disabilities. But he was also turned down for SSDI! I couldn't believe it! Would you help him?
A. That's a sad situation, and not uncommon. But we don't get involved in SSDI eligibility. If you'd like to advocate for him, I'd suggest that you get the Social Security Green Book and find the wording that they use as SSDI justification for your friend's disabilities. Then have his doctor use those words or very similar ones in a letter of support.
Q. What is the statute of limitations for filing a discrimination complaint?
A. It depends on the law that was violated - various laws have various time periods. The shortest period I know of is one year, so if you file within a year, you should be safe.
