Deaf Today: The Sound of Deafness

July 22, 2005

The Sound of Deafness

From: Asian Week - San Francisco,CA,USA

By Phil Tajitsu Nash, Jul 22, 2005

Like many Asian Pacific Americans, Wendy Cheng loves classical European music. This Taiwan-born Maryland resident studied classical piano from age 7 to 15. In college, she started learning violin, and has participated in string quartets and string and full orchestra workshops. Her love of music continues in the next generation, as she serves as a Suzuki mom to one daughter who is studying violin and another studying cello.

With all this focus on music, you might not guess that Wendy is completely deaf. She was first diagnosed at age 9, and her parents surmise the loss was related to medications she received at age 2.

The profound hearing loss in her right ear and mild to moderate loss in her left ear were addressed for many years by wearing a hearing aid. In March 1996, a viral infection caused her to lose what was left of her hearing. While some people lose hearing from preventable long exposure to loud sounds, many lose hearing from genetic causes, infections or adverse reactions to medications.

Wendy opted to get a cochlear implant, a device providing auditory nerve fibers with electrical stimuli that enable the perception of sound. The way she navigated the emotional, physical and social issues involved are described at her website (www.paulwendy.com/wendy/silence.htm).

I met Wendy at the 25th Anniversary Conference of SHHH (Self Help for Hard of Hearing People, www.shhh.org). She conducted a workshop on behalf of her organization, the Association for Adult Musicians with Hearing Loss (www.aamhl.org), and played viola at the conference banquet.

According to the Gallaudet Research Institute (GRI): "About 2 to 4 of every 1,000 people in the United States are 'functionally deaf,' though more than half became deaf relatively late in life; fewer than 1 out of every 1,000 people in the United States became deaf before 18 years of age. However, if people with a severe hearing impairment are included with those who are deaf, then the number is 4 to 10 times higher. That is, anywhere from 9 to 22 out of every 1,000 people have a severe hearing impairment or are deaf. ... Finally, if everyone who has any kind of 'trouble' with their hearing is included then anywhere from 37 to 140 out of every 1,000 people in the United States have some kind of hearing loss, with a large share being at least 65 years old."

Given APAs are about four percent of the U.S. population, and at least 3.7 percent (37/1,000) of the total population has some kind of hearing loss, there must be at least 444,000 APAs (12 million x .037) with some kind of hearing loss.

"Growing up hard of hearing is not easy; the temptation to minimize any problems we have not hearing well is really high among APA parents who have hearing-impaired children," Wendy said in an online interview. "Most APAs I know don't like to admit that they have a disability and hesitate to seek help. I think it goes back to Asian culture, where the harmony in the family is more important than your individual needs and dreams."

Fortunately, courageous individuals such as Wendy are creating resources and organizations that will help other deaf and hearing-impaired APAs in the future.

At two premier universities for deaf students, Gallaudet in Washington and the National Technical Institute for the Deaf at Rochester Institute of Technology (NTID/RIT) in New York, APA student clubs have been formed to encourage cultural sensitivity, fellowship and networking (http://wally.rit.edu/internet/subject/deafness.html#as).

Researchers are looking at the physiological, social and other issues related to the deaf community, which some have analogized to more of a linguistic minority than a group of people with a disability. The University of Arkansas has compiled a useful list for research (www.uark.edu/depts/rehabres/mcapi.html), and the National Institute on Deafness and other Communications Disorders of the National Institutes of Health has been looking at the genetic basis of hearing disorders in East and South Asians (www.nidcd.nih.gov/research/stories/archives/04/11_4_04.asp).

Each state has resources for those seeking technical assistance or who feel they are suffering discrimination based on hearing loss. Oregon, for example, has an extensive archive of materials (www.odc.state.or.us/odctac.htm, www.odc.state.or.us/tadoc/dmisc1.htm). Those with an international perspective can find websites (www.deaflinx.com) from all over.

In the APA community, a National Asian Deaf Congress (www.nadc-usa.org) has been formed. Being informed helps us be more sensitive to the people around us who are hearing impaired or deaf.