Deaf can do, can't do

What’s the first reaction of most parents after learning that their baby is profoundly or severely deaf? They may be hurtled into a mixed state of shock, grief, and disbelief. Often, the first anguished thoughts that fly through their minds are something like these: “Omigawd, my little Kimmy is deaf! She won’t be able to hear speech, or enjoy TV or music, or listen to the radio! Will she be able to speak? Will she ever learn to say ‘Mommy, I love you?’”

It is absolutely normal to have these thoughts and feelings, and they are the first step towards the process of learning how to be an effective parent to a deaf child.

RETHINKING THE LIMITS

What your deaf child can’t do is relatively limited. What your deaf child can do is relatively unlimited. Two charts are posted below. The first one, “Parents’ viewpoint,” represents how parents of born-deaf babies tend to see them—in terms of what they cannot do: not being able to hear sounds, which is considered a major handicap. When they think about their child being deaf, this is what they often think of: being unable to hear voices, or music, or bird songs, or warnings broadcast over a PA system.

WHAT IF?

Now, you may be thinking, “Won’t a cochlear implant improve the quality of my child’s life? Will it help my little Jimmy live a more independent life?” The answer is no. Even with an implant, Jimmy will still need some kind of technological and/or human assistance to gain full access to communication. The implant isn’t going to do it all. In many cases, people who have cochlear implants still need relay services, interpreters (whether sign or oral), and captioning (CART in classroom situations). And—something to keep in mind—CIs ultimately wear out, necessitating repeat surgeries to replace the internal components.

One thing we want to emphasize is that deaf children, teenagers, and adults can enjoy rich, full, and rewarding lives without implants. Some profoundly deaf people don't even use hearing aids. Important factors in deaf people’s success (without implants) are a stable, supportive home life, achievement-oriented parents, early literacy, and a good education. Our preference is for a strong sign-language foundation and promoting a language-rich environment.

THE EXPENSE ACCOUNT

Isn’t it costly to raise a deaf child? Entirely aside from the enormous expense of a cochlear implant, we don’t believe that having a deaf child puts a heavy financial burden on a family or on U.S. taxpayers. You may want to make some investments in assistive devices such as a visual smoke alarm, a doorbell flasher, a TTY, and hearing aids. Even though TTYs are now looked on as obsolescent, they are still useful. Hearing aids should be considered optional, since not all deaf children derive significant benefit from them.

A FEW BEEPS ABOUT HEARING AIDS

Audiologists often prescribe hearing aids for toddlers and young children. They are often prescribed even for profoundly or severely deaf children to capitalize on whatever residual hearing they have, and to enhance their awareness of environmental sounds. (And if you decide on this, you need to take precautions with youngsters. They’ve been known to pull the tubing or cords apart, play with them, chew them, try to eat them, or even suck the earwax from the earmolds to try to clear them out. Children who were frustrated with their aids or angry at their parents have yanked their aids out, smashed them, or even flushed them down the toilet.) While we question the utility of aids for many severely and profoundly deaf children, since they may simply amplify noise without enhancing speech reception, they are at least removable and replaceable. That’s the great advantage of hearing aids. When Kimmy reaches high-school age, confident that she’s old enough to make her own choices, and decides to stop wearing her aid, there’s no scar, no electrodes or metal left inside her skull. If Kimmy decides that she wants a newer model, she can easily obtain one. She can try out different models and shell colors.

SAME-SAME

On the whole, deaf people utilize the same office and home technologies that hearing people do. These include computers, instant-messaging systems, E-mail, fax, wireless text pagers, smartphones, and tablets. None of these are marketed specifically to deaf consumers, but they are extremely popular with deaf people.

Special mention must be given to the time-honored expedient of the pen or pencil and scratch pad or mini-notebook, which have facilitated many conversations between deaf and hearing people. Many hearing folks carry a pen and pad with them wherever they go, and so do a number of deaf people.

DEAF AND DEAF-PLUS

Should deafness be compared to other sensory disabilities such as blindness and paraplegia/quadriplegia (partial or complete loss of sensation below the neck)? Is there any reason to do so? After all, some people are Deaf-plus—that is, they are Deaf and have other life-altering conditions such as paraplegia, CP, and Usher Syndrome (genetically-linked early deafness with progressive blindness). Some people with Down Syndrome are deaf. Our point is that all deaf people have strengths that should be capitalized on.

We also want to emphasize that children with disabilities and those who are Deaf-plus can live full, adventurous, rewarding lives.

INCLUSION OR EXCLUSION?

Most deaf people (i.e., those without additional physical handicaps) can participate fully in physical activities. There are no limitations on their mobility. Deaf people have traditionally made good drivers. They can shop or travel anywhere by themselves. They can become doctors, lawyers, dancers, and artists, run businesses, and participate actively in politics. Deaf people need relatively little assistance, and the assistance they do need falls into the category of communications, not mobility. Deaf people can and do live independent, active, busy lives.

One problem we face as a community is that while blind people and those with mobility handicaps such as quadriplegia are accommodated by our society (although these rights have had to be fought for), Deaf people are urged to “get yourselves fixed” by getting cochlear implants or running the risk of being excluded from society. We respond that we, just as blind people, just as quadriplegixs, are part of our society, and we insist on being accepted as we are—“unfixed.” We also insist on participating in all matters affecting the Deaf community, such as the boards of schools and programs for the deaf, early intervention, interpreters, captioning, etc.

CAPTIONING

Many TV programs are closed-captioned. Deaf people have enjoyed subtitled foreign films for many years. They’re able to enjoy open-captioned English-language films in some cities. Many home videos have closed-captioning, as do many DVDs. Since DVDs with closed-captioned capability are marketed to the general public (deaf and hearing alike), we don’t consider closed-captioning an assistive device. Open-captioned movies, which are marketed towards deaf viewers, could possibly be considered an assistive device. Deaf people overwhelmingly prefer open-captioned fils to closed-captioned ones requiring electronic caption-decoding glasses or panels.

TV captioning, from a social perspective, is no longer seen solely as a “deaf aid.” Its benefits to the hearing population are many, and have been publicized. For example, captioning has been utilized by hearing people learning English as a second language, and by U.S.-born adult learners working to improve their literacy. And there’s another significant incentive for having more captioning available in public places: growing public awareness about (and outcry against) noise pollution, widespread concerns about the psychological and physiological ill-effects of urban noise, and a crackdown on public and private sources of unacceptable noise levels by municipal statutes and law-enforcement agencies. (In several cities—and this is a growing trend—cars, trucks, and even single-family homes can be monitored by police with hand-held noise-level meters, and the offenders ticketed and fined.) People want a quieter environment, even in cities. Public facilities such as airports and bars with TVs have been urged, and in some cases, required, to reduce noise levels by turning down the volume and turning on the captioning, and patrons of these establishments appreciate it.

Sports bars that have several TVs displaying several channels simultaneously have found that it’s much easier to use captioning to enable all patrons to understand and enjoy their favorite channels—and patrons who don’t want to listen to any TV at all can sit nearby without being disturbed. Even in laundromats, where the sound of dozens of washers and dryers thumping away in unison can drown out the sound on the wall-mounted TV, you will often find the captioning on.

Speaking of a quieter environment, captioning has been found to promote tranquility in the home. If Hubby wants to go to sleep early, but Wifey wants to watch a late movie, and they’re sharing the same bed, captioning makes it possible for both to have their way. If parents want to watch a new DVD in the living room without waking up the baby or disturbing the kids, captioning enables them to do so without sacrificing much of the enjoyment.

We are confident that, with the widespread social acceptance of captioning, it will eventually become a universal fixture on public TV setups, outdoor videos, etcetera, something taken for granted, just as hearing folks take TV and radio and electric lights for granted. So it’s really not something whose benefits are limited to deaf people only. Hearing people get plenty of benefit, too. When captioning becomes as universal as the lightbulb, deaf people won’t need to lobby for it anymore. When we no longer have to worry about the provision of captioning, we can “refocus” on our remaining needs: access to telecommunications and sign-language interpreting. The current laws mandating caption chips in most television sets manufactured anywhere in the world since 1993 may be superseded by even broader legislation governing all video media. We’re not quite there yet, but the day is coming.

TELECOMMUNICATIONS & VIDEO RELAY SERVICES

The development of the acoustic coupler made it possible for deaf people to communicate over the telephone. Originally, they used TTYs (teletypewriters or text telephones) to communicate with other TTY users. The establishment of statewide and international 24/7 telephone-relay services broadened our options considerably. TTYs have been deaf people’s favorite assistive device for the past 30 or so years, but are declining in popularity as other telecommunication options, such as Internet and video relay, are gaining. But Deafblind people find TTYs useful, so we're not branding them as obsolete technology.

SIGN-LANGUAGE INTERPRETERS AND C.A.R.T.

Most postgraduate institutions in the U.S.A. are affected by the statutes of the Americans with Disabilities Act. They must make their classes, lectures, films, etc., accessible to deaf students. This is accomplished in various ways: by having support services such as a sign-language interpreter and a notetaker. In some colleges, computer-assisted real-time captioning (CART) is used to provide deaf students with a complete transcript of the instructor’s lecture and class discussion. (CART, incidentally, was used in courtrooms to provide transcripts of the proceedings, and was “borrowed” for classroom use with deaf students. Real-time captioning employs highly trained stenocaptioners, many of whom were trained as court reporters.)

It is sometimes difficult to get hold of sign interpreters, but hospitals, clinics, libraries, courts, schools, colleges, etc., are required to provide them when needed. This is the stuff of lawsuits—when a Deaf patient requests an interpreter but none are available, or is given VRI (video remote interpreting) with poor picture quality instead. Hospitals can prevent these suits by adopting consistent and effective policies.

A FINAL NOTE

You need encouragement and support just as much as your deaf child does. Remember, if you have questions about your child’s learning patterns, quirks, capabilities, or future, the real experts are Deaf adults. Ask them. You should also network with other parents of deaf children. The American Society for Deaf Children is recommended. The challenges of parenting are formidable, but they’re made easier when you have a support system.