Deafening silence
Health care system tends to short-change the deaf, impeding their access to services, says activist
Helen Henderson
Life Writer
TONY BOCK/TORONTO STAR
Kathryn Woodcock is concerned about health advice available to the hearing impaired. Here, she is playing hopscotch with her daughter Ruby, 6.
A couple of weeks after Ontario's round-the-clock Telehealth medical advice hotline arrived in the Toronto area, Kathryn Woodcock's 5-year-old daughter Ruby got sick. Although Ruby had no fever, she was vomiting and lethargic. It didn't appear to be an emergency but the family's doctor was away and Woodcock was concerned.

She decided to call the medical hotline but ended up instead sending a sharp message to the Web site of then-Premier Mike Harris.

Because Telehealth Ontario offered no means of communication for people who are deaf, both Woodcock and her husband Miguel Aguayo were shut out.

"We had been pamphleteered within an inch of our life by this wonderful new service, yet I could find no TTY number," she recalls, referring to the teletype system used instead of the telephone by people who are deaf.

"I am dismayed not to find (a Telehealth TTY number) in the government news releases," she told Harris.

That was more than a year ago. After much lobbying from the deaf community, Telehealth did install a TTY number (1-866-797-0007). But the incident with her daughter was by no means the first time Woodcock had found herself at a distinct disadvantage in the health care system.

Do people who are deaf have access to the same quality of medical treatment as those who can hear? What happens if they find themselves in crisis in an emergency department with no sign language interpreter? Should anyone's health be affected by the role assigned to ears in a society wedded to stereotypes?

Woodcock, who has a doctorate in engineering and teaches at Ryerson University's School of Occupational and Public Health, started a rough analysis of a few numbers. She was alarmed at what she found.

Using information from Statistics Canada health surveys, she compared the overall health of people who identified themselves as having no hearing "problem" with those who said they did have a hearing "problem," either "corrected" or "uncorrected."

She incorporated into her analysis answers to a number of StatsCan questions, including: "In general would you say your health is ...?" and "During the past 12 months, was there ever a time when you felt that you needed health care but didn't receive it?"

Among people who identified themselves as having no hearing problem, Woodcock found some 38 per cent in very good health, 36 per cent in fair health and 25 per cent in poor health. By contrast, she found almost no one who identified a hearing problem to be in very good health.

Among those who cited a corrected hearing problem, 40 per cent were in the "fair" range in overall health, 60 per cent in the "poor" range. And in the group with uncorrected hearing problems, some 90 per cent were in the "poor" range.

As an experienced researcher, Woodcock knew such wide discrepancies needed more scrutiny. She knew her quick comparison didn't take into account factors like age. Older people who are hard of hearing could expect to have more age-related health concerns.

But she also knew from experience that access to health care services can indeed vary dramatically between the deaf and hearing communities. In some communities, "accessible mainstream services are scarce if not non-existent for deaf Canadians," she says.

With her colleagues at Ryerson, Woodcock hopes to find someone to fund a more detailed study, putting solid numbers to what she believes is an important determinant of health among the deaf community.

Within the deaf culture, Woodcock and her husband, who is a human resources consultant with the Canadian Imperial Bank of Commerce, are known as "deafened."

Both were born with hearing but lost it as they were growing up. Both have cochlear implants, which have given them back some sound. Both lip-read and use sign language. But even with all that, they still have trouble accessing health care.

When Woodcock lived and worked in the U.S. (she taught at the Rochester Institute of Technology), she had no problem getting interpreters in the hospital system.

When she had to go to the emergency department, "literally the second question they would ask after `What is the matter?' is `Do you need an interpreter?'"

Back in Canada, it was a different story.

Lying on a stretcher waiting for surgery, Woodcock was approached by one of the medical team, who asked a question. Woodcock lip-reads but in this instance couldn't catch what was being said, even after repeated tries, So she asked the man if he would write the question down.

`Many of the deaf people I have met solve their communication difficulties by avoiding health services until in undeniable need not an ideal model of health promotion and early intervention'

 

Kathryn Woodcock in a letter to Health Minister Tony Clement

 

She had no trouble lip-reading his answer. "Never mind," he said as he turned and walked away.

"The feeling that the medical team is one piece of information short of what they want is no frame of mind to be in when they bring on the general anaesthetic," she says.

Five years ago, the Supreme Court of Canada ruled that hospitals must provide free sign language interpretation services so deaf patients can communicate with those giving them medical care. With funding so tight throughout the system, however, little has changed

Next month, the Canadian Hearing Society hopes to launch a pilot project, operating a 1-800 dispatch service that hospitals and other emergency services can call if they need an interpreter outside regular business hours. (Interpreters are available through the society between 9 a.m. and 5 p.m., Monday to Friday.)

The project could be a big help. But hospitals are only part of the problem. For someone who is deaf, even making an appointment with a doctor can be a trial.

To communicate with offices that don't have TTY lines, people who are deaf can use Bell Canada's relay service. An operator reads into the phone whatever TTY message has been typed, then transcribes the verbal response for the TTY user to read.

No matter how good the relay operator, the effect is similar to two people who speak different languages carrying on a conversation through a translator: laborious, time-consuming and fraught with potential misunderstandings.

A couple of years ago, Woodcock's husband was trying to make an appointment with a specialist for a client.

Aguayo left several messages through the relay service but was never called back. Eventually he discovered the specialist refused to call because he found the relay process too cumbersome.

Which is part of the reason Woodcock saw red at the government's response to her complaint about Telehealth.

Mike Harris forwarded her e-mail to Health Minister Tony Clement, who wrote back that she could "simply call the relay service" to reach Telehealth.

Woodcock replied that simply wasn't good enough. What if she got a relay operator who couldn't spell complicated terms? What if the word "not" was inadvertently left out of a transcription?

"The only health services allegedly accessible to deaf consumers involve `gatekeeper' organizations with which many feel uncomfortable," she wrote.

"Many of the deaf people I have met solve their communication difficulties by avoiding health services until in undeniable need not an ideal model of health promotion and early intervention."

The lack of interpreters in health care precludes effective communication, Woodcock told Clement. "This reduces the deaf patient to little more than a sick animal and the physician virtually to the role of veterinarian."

Woodcock, who was a vice-president at Centenary Health Centre before heading to the U.S., says we need a new attitude to communication.

For anyone born deaf, speedy access to interpreters is essential, she says. But deafened people who learn sign language later in life are not always well-served, even with an interpreter. And few people who are hard of hearing learn any sign language.

Yet when deaf patients ask to have information written down, "they often receive rudimentary notes, not the same level of communication as people who can hear," she says.

The whole issue of communication, including the need for sign language interpretation, has been regarded from a limited perspective, she says. It's as if "the interpreter is simply an enhancement intended to increase the enjoyment and benefit that the deaf person gets from the doctor."

Woodcock has a different perspective. Rejecting interpreters is "a foolish liability,"she points out.

"For diagnosis and informed consent, the physician requires the interpreter more than the patient does," she says. "If the physician cannot get through to the patient because of a linguistic barrier, they cannot get informed consent."

For more information on the Canadian Hearing Society's pilot project to provide emergency interpreters, call 416-928-2520 (voice) or 416-928-2510 (TTY).

Legal Notice:- Copyright 1996-2002. Toronto Star Newspapers Limited. All rights reserved. Distribution, transmission or republication of any material from www.thestar.com is strictly prohibited without the prior written permission of Toronto Star Newspapers Limited. For information please contact us using our webmaster form.

Home Health care barriers Advocacy Stories Technology will save us (?) CI Department