Demanding a Hearing
By Maria Blackburn
Her heart raced. Husain, who is deaf, had been forbidden from learning sign language as a child and had rarely seen deaf people signing on the street in her hometown. She moved closer to the bus. "Hey," she wanted to say. "I'm deaf like you." But the light changed and the bus lurched forward. That's when she noticed the words printed in Urdu underneath its windows: "Gung Mahal, school for deaf and dumb, Gulberg, Lahore."
The words infuriated Husain. Deaf and dumb? They still have this? she thought. Don't they know that dumb means stupid?
Husain knew. Going to high school in the United States had opened her eyes to deaf culture, to the need to assert her rights as a deaf person. She knew the use of the word "dumb" was not only outdated and outmoded, it was wrong. The administrators of the government-run school for the deaf should know it, too, she thought.
Being called "dumb" was just one of the many issues deaf Pakistanis confronted. Many had never learned how to read and write, and therefore lacked decent jobs. Unable to communicate with the hearing, they were treated like second-class citizens. "Most developing countries, including Pakistan, have a paternal attitude toward people with disabilities," says Husain. "They say they pity them and they help give them hearing aids, but they don't encourage them to do things on their own."
On the street that February afternoon in 2001, amid bus exhaust and idling cars, an unlikely advocate was born.
Husain considers herself a good Sunni Muslim woman —
respectful to her elders, obedient to her parents, devoted to
her family and to Allah. But when she realized how badly those
with disabilities were educated and treated in her native
Pakistan, she could not stand by and watch. "Sometimes you have
to speak up," she says.
|Zara sat in classes where she couldn't understand the teachers. She stared at the walls, the clocks, the other students, trying to pass the hours of silence. "I missed so much," she says.||
Now 27, she has spent the last 10 years working for change, and
plans to continue that work for the rest of her life. Her
vision: that Pakistan's deaf get the assistance and education
they need. "I want society to understand there's a need not to
take the paternal approach," says Husain, who came to the Johns
Hopkins School of
Education on scholarship from the government of Pakistan
last fall to pursue a master's degree in special education
technology. She graduated in May. "There needs to be
empowerment via a social model where the deaf can feel
stronger, stand on their own two feet, implement their own
ideas, and live a successful life."
As the only deaf child in hearing schools, Husain knew how it felt to be isolated, invisible. Her graduate research gave her a richly detailed picture of the state of the Pakistani deaf community. She holds a second master's in special education, and hopes to continue her studies in special education through a PhD program. "I came to America for one reason," she says. "To learn all kinds of different things so that I can go back to Pakistan and help the deaf community there."
Sitting at a table in the busy student lounge at the School of Education's Columbia Center one evening in mid-March, Husain looks like many other graduate students studying for midterms. She has shiny shoulder-length dark brown hair and wears jeans and designer tortoise-shell glasses. "I hate my glasses, but I need them because I ruined my eyes with all the closed-captioned TV I watched in the dark when I was in high school," she says.
If Husain had been born deaf in the United States, she likely would have gone to public school with interpreters and other resources to accommodate her needs. She would have watched closed-captioned television at home, used hearing aids to make the most of her residual hearing, and taken advantage of assistive technologies like teletypewriters to talk via telephone. But none of this was available in Pakistan in the late 1980s and early 1990s when Husain was a child, and very little of it is widely available today. In fact, 25 years ago when her parents realized their year-old daughter was deaf, even hearing aids were an unheard-of luxury. The few schools for the deaf in Pakistan's cities offered a poor quality education in shabby buildings that lacked even the most basic equipment, Husain says. Teachers didn't speak sign language, and students were taught through memorization, with little emphasis on actual learning. Few deaf students went to college; most were limited to jobs like working as tailors or doing data entry, forcing them to live with relatives throughout adulthood.
Most of these conditions haven't changed in the last quarter
century. "Ours is a backward country," says Iftikhar Husain,
Zara's father. "We are not as well off as the United States.
The feeling of the general public here is that deaf people
can't be brought up to the level of hearing students."
|Zara Husain (fourth from left), her mother, and her third-grade classmates||
In Pakistan, people with disabilities are largely perceived as "unfortunate ones who can't perform their roles in society," says Zara Husain.
This is especially true in rural areas, according to Akram Muhammad, a Pakistani deaf advocate who was interviewed last October for an article on i711.com, an Internet relay site for people who are deaf or hard of hearing. "Some . . . families do not send their deaf daughters to school," Muhammad, who is deaf, said in the interview. "They may feel ashamed if they have a deaf or disabled child in the family. Deaf women and girls are doubly discriminated [against]; they seldom have an opportunity to develop their abilities. No one listens to them, and they can't express themselves."
Pakistan "is essentially the way the United States was back in the 1950s, the way we treated people with disabilities then," says Husain's adviser, John Castellani, an associate professor in the School of Education's Department of Teacher Development and Leadership. "People don't really understand concepts like inclusion."
Husain was born with a hearing loss of 85 decibels in her left
ear and 95 decibels in her right ear. Without hearing aids, she
is unable to hear a sound as loud as a telephone ringing or a
dog barking. With them, she can hear papers rustling, a cell
phone beeping, and understand some speech sounds. Though her
parents found her the best hearing aids possible, from the
outset, Husain's mother, Salma Iftikhar, had difficulty
accepting her daughter's condition. She forbade her to learn to
sign because she didn't want her to be marked as deaf. "In
America, sign language is accepted as a language itself,"
Husain explains. "In Pakistan, it is like a taboo." (Even now,
Salma says her daughter has a "hearing problem." Zara's
response: "Mom, I'm deaf. What's the problem?")
|Zara and her parents, Iftikhar Husain and Salma Iftikhar||
When Zara Husain was about 5, her mother decided not to put her
in a deaf school. "I want her to read like any other child,"
she told her husband. She approached the principal of a small
private school called Eton and volunteered to teach her
daughter's class of six students. For five years she taught
there, adapting material for Zara and teaching her how to
speak, read, and write. However, when she became ill and had to
stop teaching, Zara's school experience changed drastically.
From then on, she sat in classes where she couldn't understand
the teachers. She stared at the walls, the clock, the other
students, trying to pass the hours of silence. "I missed so
much," she says of her lessons.
In 1995, her father accepted a post at the Pakistani Embassy in Washington, D.C., so the family could move to the United States and Zara could go to school. At W.T. Woodson High School in Fairfax, Virginia, Husain thrived. As one of about 60 deaf and hard-of-hearing students, she attended regular education classes accompanied by an interpreter. For the first time in her life, she made deaf friends, learned sign language, and went to speech therapy. "At home in Pakistan, Zara was often depressed," her father says. "In the United States she loved school. She could go out with her friends. There was a transformation in her personality."
Husain had long struggled with the question of whether or not she was "normal." While in the United States, her parents strongly encouraged her to get cochlear implants. When she was 16, Husain decided that for her, deaf was normal. She didn't want the surgery. "I thought, if I [continue] speech therapy and I speak pretty well, then why would I need a cochlear implant?" Husain says. "I am natural the way I am born. So if Allah made me deaf to face tough tests, then it is fine. I will succeed."
Husain graduated from high school a year early and returned to Pakistan with her family in 1999. She earned a BA in English literature, journalism, and applied psychology from Kinnaird College in 2001, then enrolled in a master's degree program in special education at the University of the Punjab. While in the States, she had read plenty of books about American Sign Language (ASL) and American deaf culture. But when she looked for similar materials in the university's library, she found nothing at all about Pakistani Sign Language and Pakistani deaf culture. "I was bothered by how the deaf community was given a non-existent status in the literature," she says. "They were around in society, but our people did not give them the recognition they deserved."
Faced with such a dearth of information, Husain focused her
graduate research on understanding and documenting the deaf
community in her country. Her thesis would be the first
substantial research devoted to the topic — and the first
step, she thought, to changing the way Pakistani society
treated its deaf. In 2003, accompanied by a deaf friend who was
fluent in Pakistani Sign Language, Husain interviewed 50 deaf
adults and teenagers in Lahore. She asked a series of 40
questions about their education, social and communication
skills, job satisfaction, self-esteem, and life goals. What she
discovered was a diverse group of individuals who enjoyed being
with other deaf people but didn't identify themselves as a
distinct culture. "Deaf communities are being divided, not
united under one umbrella," Husain says.
|Left, Husain and her husband, Tahir Rathore, in his parents' home in Massachusetts||
Deaf people she interviewed in Lahore thought they should do
their best to fit into the hearing world. They hadn't heard
about technological devices like TTYs and relay systems. Nor
were they aware of Pakistan's National Policy for People with
Disabilities, a legislative paper finalized by the government
in 2002 that aimed to provide care, education, and
rehabilitation for people with disabilities but remains
unfunded and largely unpublicized.
During the interviews, nearly every person she spoke with, teen or adult, started off by telling Husain they were happy to be deaf. "To be deaf is considered a gift from Allah," Husain explains. However, as the interviews went on, her subjects revealed just how miserable they felt.
They were poor. "My husband is very cruel," said one woman who, because of deafness, was largely isolated from the world outside her home. "He does not give me money for feeding the children. I keep borrowing money from people, other relatives. My fate is destroyed with this man."
Many couldn't read and write. "Our teachers are not good," a student at Ram Nagar School for Deaf Girls told her. "They sit free all [the] time. They tell us to clean the rooms. They drink tea and have us buy food for them." One male student, who said his teachers did not sign at all, added, "My teacher is foolish. He always scolds us for no reason. When we can't understand, he talks for an hour telling us we are bad and deaf. Why can't we be like hearing people? We are stupid. We can't speak like hearing people — this is what he does. He insults our feelings."
Some believed that hearing people were universally superior to
them. "Normal and deaf people are never equals," an old woman
told Husain. "We do not have good jobs. But hearing people do.
We are uneducated, and we understand language very little. But
hearing people are educated, and they understand language. What
can we do? Hearing people are better than us. We feel sad."
|Husain and her sister Anam in Islamabad, Pakistan||
So many of the deaf she spoke with sounded so helpless. Some
talked about how they wanted foreign governments to help them
move away from Pakistan; others complained that their own
government should do more. "Change your approach," she wanted
to tell them. "You all have a responsibility to help the
government as much as they have a responsibility to help you.
Teach them how to communicate with you. Learn to help each
other. You have to let go of that helplessness and be
assertive." Her interviews led Husain to realize how much
needed to be done. There needed to be equal education for the
deaf from elementary school through college, development of
intervention programs to reduce communication problems among
the deaf, increased recognition of Pakistani Sign Language, and
access to skilled translators. Perhaps most importantly, deaf
Pakistanis had to learn how to advocate for themselves and come
together in a grassroots movement. "People needed to know that
they could be successful," she says. "They could do it."
Husain knew the readership for her thesis was small, and she didn't want her work to languish on a library shelf. So she decided to make a short documentary that would reach both deaf and hearing audiences through voiceover and onscreen Pakistani Sign Language interpretation. The film features interviews with deaf Pakistanis and portrays both the positive and negative aspects of being deaf in Pakistan. "I wanted to capture the voices and realities of the lives of deaf people and students in Pakistan," she says.
Husain also saw the film as a way to introduce Pakistan's deaf to the idea of advocacy, a concept that had changed her own outlook a dozen years before. She concluded the documentary with a brief explanation of the National Policy for People with Disabilities and told viewers how Pakistan's deaf could bring about change by working with provincial and federal governments and by collaborating with deaf communities in other cities. The 15-minute film is scheduled to air on television in Pakistan in the coming months. "I hope once it's shown on TV there will be a change," she says. "I wanted people to know that it is OK to be deaf. Deaf voices should be seen and heard."
When Husain graduated with an MA in special education in 2003, she became the first deaf person to earn a graduate degree from the University of the Punjab in the school's 121-year history. As the top student in her class, she was also awarded a gold medal and 100,000 rupees (about $1,500).
A year after graduation, Husain married Tahir Rathore, a deaf
American-born Pakistani who works for the U.S. Department of
Defense, and she moved to Alexandria, Virginia, to live with
him. It was an arranged marriage, one that Husain, a dutiful
daughter, readily accepted. But she refused to give up her
life's work for it. "I don't want to let the marriage interfere
in my plans," she says. "I still have a goal to finish" —
the goal of working with the Higher Education Commission in
Pakistan to help people with disabilities get a quality
|"Change your approach," she wanted to tell them. "You all have a responsibility to help the government as much as they have a responsibility to help you. You have to let go of that helplessness and be assertive."||
Husain began graduate studies in international development at
Gallaudet University. But when the Higher Education Commission
of Pakistan awarded her a full scholarship, she found that
Gallaudet wasn't on the list of universities the scholarship
would cover. Johns Hopkins was, however, and offered a master's
degree in technology in special education. Husain saw
technology as a "breakthrough" to helping accommodate Pakistani
students with disabilities in schools. She began at Hopkins
Her courses, which focused on assistive technologies like online classes and software programs that help students with disabilities relate to lessons in the classroom, were a challenge at first. "Learning to do technology in the first course of the program was very overwhelming for me. I was used to . . . teaching by paper, chalkboard, transparencies, pen, group activities, and worksheets," she says. "I had no idea about online discussions and the complexities that come with designing an online course." An academic year later, Husain can imagine herself using blogs and video logs to encourage deaf Pakistanis to sign and type over the Internet. Computers, she says, will provide the "visual platform to real-life situations where they can present their understanding practically." Although technology resources in Pakistan are limited and Internet speed and access could be major hurdles, Husain is determined to adapt what she has learned for her home country. She plans to start a school for the deaf in the speech clinic her mother opened in 2001, and to use assistive technologies and computer software and hardware to help students learn. Her school, she says, could serve as a model, offering Pakistani educators a vision of how technology could be used to help people with all kinds of disabilities.
Of course, technology won't solve every problem. Sometimes, Husain says, the parents of deaf children she meets in her mother's speech clinic make a fuss over her ability to speak. She deflects their attention, suggesting instead that they focus on themselves and, more importantly, their own children. "Parents at my mother's clinic cry in front of me," she says. "'I have a deaf kid,' they say. 'What am I going to do about their future? Will they be able to marry? Will they have a high education like you?'"
"Don't cry in front of your children," she tells them. "Even though they cannot hear, that doesn't mean they don't know you are upset about them."
And when parents say they feel terrible that their deaf children are "not normal," Husain stops them from speaking another word. "I am normal," she tells them. "Your children are normal. They are fine. You are the person in need of help."
Maria Blackburn is a senior writer at Johns Hopkins Magazine.
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