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Issue 6


  ocean waves

Ripples, A Tide, An Ocean

By Cal Montgomery

Ripples, as in water. Ripples, moving out from the center. Meeting other ripples that calm it into stillness; meeting other ripples that build it into waves.

You cannot push water into a pile. It comes out from between your fingers and over the top of your hands. It ripples outward. The light hits it. The light dances when it hits the moving water, sparkling this way and that.

You cannot shape water. If you want it to hold a shape, you have to cage it. To catch it in walls. You have to keep it inside its cage, or freeze it hard and cold so that it cannot move.

Liquid water wants to flow free.

Lee Larsen is the deaf mother from Michigan whose right to decide whether or not her sons Kyron and Christian are subjected to elective surgery was affirmed by Judge Kathleen Feeney on October 4, 2002 . News of the case rippled out; the ripples became waves that moved across America and beyond with a force that surprised the judge.

At first, Lee Larsen's case was private, between her and her family. Then other people got involved: teachers, social workers, interpreters, lawyers. As the pressures on her mounted to shape her deaf sons to make them less Deaf, more hearing, she started ripples. Flowing out, like in water, so that everyone could feel them.

"She fought this, she fought this and won. She is our hero."
- Nancy Gingery-Merchant of Wyoming, quoted by Theresa D. Mcclellan in The Grand Rapids Press.

"This is a significant decision for parents nationwide, deaf or hearing. The NAD recognizes the right of parents to make informed choices for their deaf and hard of hearing children, including the use of cochlear implants and all other assistive devices, and strongly supports the development of the whole child with emphasis on language and literacy."
- Nancy Bloch, Lee Larsen supporter and Executive Director of the National Association of the Deaf

This case wasn't about whether cochlear implants (CIs) are good things or not, Ms. Larsen's supporters insisted -- though Joe Tevlin, the court-appointed guardian ad litem for her sons Kyron and Christian Robinson, seems to think it was. It was about whether deaf parents of deaf children have the same right to parent that hearing parents of hearing children do.

And, because this case would have set a precedent, because it turned on matters of law, not matters of fact, it was about whether families with disabled members have the same rights that nondisabled families do.

Lee Larsen said it. Her lawyer David Gersch said it. Celeste Johnson said it. Claudia Lee said it. Jeannette Johnson said it. Deaf people. Hard of hearing people. Hearing people. People in Grand Rapids. Rich Harkleroad from the Michigan Deaf Association. People across Michigan. Nancy Gingery-Merchant from Wyoming. People across America. Karin Kestner from Germany. People across the world.

Many of them went to Michigan, or sent money to help, or told others. Philip Moos, for example, kept the -- as I write this -- 3,758 members of USA-L_NEWS informed about developments. GRDEAF_PROTEST, a list Jeannette Johnson started to help coordinate the response, grew. People worked so that Judge Kathleen Feeney and the lawyers and the people who had begun watching the story in newspapers and on television could see the ripples build powerful waves.

Lee Larsen said it. David Gersch said it. Celeste Johnson said it, Claudia Lee, Jeannette Johnson, Rich Harkleroad. Deaf people, hard of hearing people, hearing people. People in Grand Rapids said it, people across Michigan, people across America. People across the world said it. And on October 4, 2002, Judge Kathleen Feeney said it too.

Ms. Larsen's supporters, many of them at the courthouse, were thrilled.

The news flowed out from supporters and reporters. People who had asked one another all day, "Have you heard anything from Grand Rapids?" were lifted up by the rippling news.

And then the joy rippled outward, too. Like in water.

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Currents in a Hearing Ocean

"The traditional way of writing about Deaf people is to focus on the fact of their condition -- that they do not hear -- and to interpret all other aspects of their lives as consequences of this fact," write Carol Padden and Tom Humphries in their book Deaf in America: Voices from a Culture.

This is also the traditional way of thinking about deaf people -- and it is the way that Joe Tevlin, the boys' guardian ad litem, seems to think. "[Implantation] would give them the opportunity to live a healthy, happy, normal life," he told CNN. The implication is that profound deafness -- for CIs would not give the boys normal hearing, though they might allow them to get more information from sound than they do now -- will prevent them from living happy, healthy, and normal lives.

"[Implantation] would give them the opportunity to live a healthy, happy, normal life."
- Joe Tevlin, Kyron's and Christian's court-appointed guardian ad litem

"[W]hen I first became president, I said deaf people could do anything except hear. That became kind of a slogan that has followed me. I would like to amend that. Instead of saying deaf people can do anything, now I want to show that deaf people are doing everything."
- I. King Jordan, who became President of Gallaudet University in 1988 after students and community leaders demanded "Deaf President Now"

"The problem is not that the students do not hear. The problem is that the hearing world does not listen."
- The Rev. Jesse L. Jackson, commenting on the Gallaudet DPN protests

This is an understanding of what it means to be deaf -- to not hear -- that has long been challenged by deaf people.

In 1988, during the Deaf President Now demonstrations at Gallaudet University, Jane Spilman, then chairperson of Gallaudet's board of trustees, was believed to have said that deaf people were not able to function in a hearing world.

Ms. Spilman denies saying any such thing. The conversation in question was heated; Ms. Spilman, who knew only spoken language, depended on an interpreter who may have misunderstood an awkward sentence; eyewitnesses have offered conflicting accounts. But students' belief that she believed the school's graduates still weren't ready to take on the hearing world was one of the factors that increased tensions.

Because of the protests, Ms. Spilman resigned her position, the hearing president-designate withdrew, and Dr. I. King Jordan was installed as the university's first deaf president. President Jordan's insistence that deaf people can do anything except hear was taken up as a statement of defiant pride -- and at times, a battle cry.

Whatever Mr. Tevlin and the prosecutor, Kevin Bramble, were doing in 1988, it didn't include taking President Jordan's message to heart -- and so almost a decade and a half later they headed off to court, requesting judicial authority so that two little boys could grow up to do anything because they could hear.

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Currents Join Together

According to Lois Van Broekhoven, Interpreter Referral Specialist for DEAF, etc., Lee Larsen's ex-husband is capital-D Deaf -- he's part of a cultural and linguistic minority group whose language is signed, not spoken. Her ex-boyfriend, Kyron's and Christian's father, is little-d deaf -- he can't hear -- but not Deaf.

Mr. Robinson, like Mr. Tevlen, wants the boys to speak.

Ms. Larsen, says Ms. Van Broekhoven, "wants her boys part of Deaf Culture and the hearing world. She wants them to sign and to talk."

The question of how best to raise deaf children who will spend their lives in a society dominated by hearing people is not new; arguments between speech-only oralists and manualists stressing the importance of sign are old news; and both hearing and deaf parents navigate difficult waters to choose the languages their deaf children will learn.

Read about the oralist-manualist debate:

In these waters, Lee Larsen made choices for her boys. When staff at the Shawnee Park Oral Deaf Program, the boys' school, suggested CIs, she read the information provided about them, and decided against them.

Although many hearing people think CIs are an unmitigated benefit to deaf people, things are not so straightforward for either the community as a whole or individuals who may or may not be part of that community.

There are concerns that as deaf children are made "more hearing", the Deaf language and culture will die. Children who are born deaf, or who will become deaf later on, are often raised in worlds in which -- at least until their deafness is recognized -- the spoken word is familiar, the signed word foreign. While communities in which deaf people are not unthinkingly excluded from communication are possible (See "Everyone Here Spoke Sign Language: Hereditary Deafness on Martha's Vineyard, By Ellen Groce), they are not now routine. The transmission of Deaf language and culture from generation to generation is more fragile than that of some other linguistic and cultural minorities.

"I wonder, if these were hearing parents whose kids were in foster care and who had learned about the risks involved with a cochlear implant, would the judge still think that the kid should be implanted if the parents didn't want it?"
- Emily Alexander, Deaf activist from California

There are also concerns about CIs' benefits to deaf individuals. During surgery, ears are damaged and residual hearing destroyed. After surgery, patients risk infection -- - that happens whenever anything is implanted in the body -- and questions have raised about meningitis in particular. Then great effort is needed to learn how to use the implants, and people like Kyron and Christian, who have been deaf from birth, have it hardest.

Ms. Larsen's attorney, Mr. Gersch, has pointed out that because children who have been implanted need clear models of speech in order to learn to understand speech using the implants, implanting Ms. Larsen's kids may make her less able to meet their children's educational needs.

Deaf and hard-of-hearing people disagree as to whether, overall, cochlear implants are helpful. But many set this difference aside to come together protesting the state's attempt to override a parent's decision about how to give her sons the best start.

In Michigan Protection and Advocacy Service's (MPAS) amicus curiae brief, they list relevant facts "which MPAS reasonably believes are not disputed" is given. Among them:

  • Ms. Larson and both children are deaf.
  • The children are temporary wards of the court (following an unrelated event); she is making progress toward bringing them home.
  • The family court, Ms. Larson, and the boys want the family to be reunified.

    MPAS notes the circumstances which might give Judge Feeney the authority to overrule Ms. Larsen's right to refuse surgery.

    Parents "clearly and unambiguously" have the right to decide whether or not their children will be submected to "nonemergency, elective surgery", even when their children are wards of the court, so long as parental rights have not been terminated; the Family Independence Agency (FIA) has policies in place to ensure that parents can exercise that right. "This interpretation makes the best sense given the statutory intent that the family will be reunited."

    CI surgery is nonemergency and elective; nobody argued that Ms. Larsen was unable to make decisions about CIs.

    But, says Claudia Lee from the Deaf Community Action Network (Deaf C.A.N.!), at the September 5 hearing prosecutor Kevin Bramble acknowledged the FIA policies and said he would not support them in this case. (Mr. Gersch asked Judge Feeney to remove Mr. Bramble from the case; she refused.)

    In other words, as Calvin Luker, an MPAS attorney, stressed, Judge Feeney wasn't being asked to determine the facts of this case. She was being asked to reinterpret the law to override Ms. Larsen's parental rights.

    And that means precedent. That means that the outcome of Lee Larsen's case could have had a huge impact on other parents down the road.

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    First Ripples

    DEAF, etc. had been involved in the initial, confidential, aspects of the Larsen case since about October or November of 2001, Ms. Van Broekhoven told me. "We have supplied the social workers who have worked with [Ms. Larsen], information on deaf culture, language skills, ASL, etc. We have sent interpreters in the hearings and to the various assessments/therapies/classes/meetings, etc. that Ms. Larsen has had as well as that for [her ex-husband]." Mr. Robinson was not involved in the case until the end; Ms. Larsen's ex-husband's involvement ended before the cochlear implant issue arose.

    But, says Ms. Van Broekhoven, "early in the summer, the courts decided to schedule a specific hearing to focus on the issue of... Kyron and Christian getting cochlear implants."

    Attorney David Gersch's arguments on Ms. Larsen's behalf:

  • This mother has the right to make a decision for her sons as any other mother. This is the core of his argument. In addition:
  • The implants might not be as beneficial as hearing people believe.
  • Much of the benefit would depend on Ms. Larsen's ability to model perfect speech and the ability to hear whether the boys imitated it successfully. She cannot do this.
  • If the boys became increasingly oral and she were unable to communicate with them fully, it would be difficult for her to maintain a healthy relationship.

  • As Mr. Gersch prepared to argue the case, Ms. Larsen decided it was time to reach out for support. She contacted Celeste Johnson, whom Ms. Van Broekhoven thought might be able to help; after the first hearing, which ran for three days in August, Ms. Johnson got in touch with Claudia Lee of Deaf C.A.N.!

    Ms. Lee got in touch with people across the world. Her first public message, which was circulated on the internet, told readers that "the local oral deaf school wants the children to undergo cochlear implant surgery. The mother does not want the surgeries to be performed....

    "Currently, it is the opinion of those observing three days of testimony that the Judge is leaning toward ordering the surgeries to be performed.

    "The case has been argued based on whether CI's are the right or wrong thing to do for the children.

    "However, a larger issue is at stake....

    "This is really a civil rights issue.... This is not a case to say a cochlear implant is a good or bad thing, but about the right of a parent to decide if his/her child should undergo elective surgery with the risks involved."

    After the September 5 hearing, Ms. Lee sent out a followup message, letting people know what had happened, and asking them to write the judge. (The judge did not read the mails, since they were deemed ex parte communications, but the message that this was a case the community was taking seriously was starting to get through.) The ripples grew.

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    Tides Flowing 1: Public Outcry

    Among the people who read the update was Jeannette Johnson, a Deaf student at Rochester Institute of Technology and Celeste Johnson's daughter. Jeannette Johnson had felt the first ripples early, but it wasn't until Ms. Lee amplified them that she acted:

    "My mother Celeste and a mutual friend of mine and Lee told me about the case. I wasn't happy it went to court but at that time I didn't take it seriously because I didn't have all of the information. As time went by, the more information I got and the more outraged I got. I was at school when Claudia Lee sent out an e-mail explaining the events in court on Sept 5th.

    "At that point, I was livid, and I felt like something needed to be done. So, I sent out an e-mail to all of my friends, including Claudia Lee, and said hey I'm thinking of organizing a protest in Grand Rapids. Tell all of the deafies in Michigan to go and bring picket signs.

    "Well. Somehow, my e-mail spread like wildfire through the internet and I began to get e-mails from people all over the country supporting the protest rally and wanting to know more information. At that point, I realized that this could be historic due to intense interest."

    She set up the GRDEAF_PROTEST list to ensure that people interested in protesting had the information they needed, and she started asking for help. Tim Riker helped her connect with state associations for the deaf. Claudia Lee got funding to get a permit, and organized speakers for the rally. "Claudia Lee did a great deal of organizing this protest. She was incredible and we all owe her for that. The rally was my idea, but Claudia definitely helped make it happen."

    Others helped, too.

    Claudia Koslosky, the mother of a Deaf son, arranged to borrow a portable stage from Northview Public Schools, which houses the local Total Communication Program for Deaf and Hard of Hearing Students, and she and Bruce Partridge, a longtime ally of the Deaf community, ensured that it was in place so that rally participants could see the speakers.

    Community leaders, including Nancy Bloch, executive director of the National Association of the Deaf, Rich Harkleroad, president of the Michigan Deaf Association, and Ron Swartz, chairman of the board of Deaf C.A.N.! Jeannette Johnson was unable to attend, but her mother Celeste Johnson delivered a speech on her behalf.

    Interpreters, who would also play a key role in ensuring that people in the "overflow room" inside the courthouse knew what was going on -- interpreters had been hired only for the participants, although courtroom spectators could usually see them too -- worked to that the rally was comprehensible to people using both signed and spoken languages. Among the interpreters organizers thanked explicitly after the ruling were Paul Fugate, Barbara Hinson, Celeste Johnson, Claudia Lee, Jeff Oliaz, Lois Van Broekhoven, and unnamed interpreters who came with the students from Northview Public Schools.

    Estimates of the number of attendees, even in the rain, range from 100 to over 200.

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    Tides Flowing 2: Informing the Court

    Because of the risk that Judge Feeney would rule not on the basis of Ms. Larsen's parental rights, Ms. Larsen's supporters knew she had to be informed. Two efforts to inform her stand out.

    First, MPAS lawyers wanted to file an amicus curiae brief explaining what they believed the issues were. On September 27th MPAS formally asked for permission to file a brief on October 14.

    Judge Feeney could have said no. But Amy Maes, MPAS Director of Advocacy Services, was informed on Wednesday, October 2, that the brief would need to be in in less than 48 hours. MPAS attorney Calvin Luker and his wife Tricia Luker, "a mom in the trenches" who researched other stories, returned immediately from Washington, DC, to get the brief in on time.

    There was also a problem with Ms. Larsen's expert witness, Dr. Robert Hoffmeister of Boston University.

    Since Mr. Bramble suggested that Kyron and Christian needed CI's in order to develop the language centers of their brains properly -- this seems like a holdover from the discredited belief that only spoken languages are "real" languages -- and since Judge Feeney seemed interested in what benefits cochlear implants would provide the boys, Mr. Gersch needed an expert who could refute these ideas -- and Dr. Hoffmeister seemed ideal.

    As Ms. Larsen's supporters prepared for the October 4 hearing, they wanted to bring Dr. Hoffmeister to Grand Rapids. Dr. Hoffmeister, said Ms. Van Broekhoven, "had testified by phone on September 5 but the testimony was not completed. It was obvious that the testimony would be more effective if in person."

    Richard Harkleroad of the Michigan Deaf Association (MDA) took on the job of raising money. Mr. Harkleroad set out MDA's reasons for wanting Dr. Hoffmeister to testify in a letter of solicitation, explaining the situation the way the Deaf community saw it.

    Summary of arguments from the MPAS amicus curiae brief:

  • Parents have the right to "parent" children, including making medical and other decisions. In some circumstances the state may step in -- but there was no justification for the state to step in this time.
  • When children are temporarily removed from the home, everyone works to reunify the family. Ensuring that parents can continue to make "nonemergency, elective" medical decisions for their children is an important part of meeting that objective, as Family Independence Agency policies acknowledge.
  • The Court did not have the authority to override Ms. Larsen's refusal to authorize the surgery. "As a matter of policy, this result is necessary not just for the Larson family, but for all families who have children with disabilities."

  • It worked. Hoffmeister made it to Michigan, and his testimony, including that there was no guarantee CIs would assist the boys in learning English, was met with cheers from those Larsen supporters in the "overflow room" who, unlike those in the courtroom, didn't have to restrain themselves.

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    Ripples to Waves

    Now people who had not felt the first gentle ripples, people who had not felt the ripples build, were able to see the syncopated light dancing off the waves.

    A press release after the decision reported, "Those on the upper floors of the Court House could not fail to miss the awesome spectacle [of the rally], even if they couldn't hear it."

    Supporters from other countries were watching and weighing in. Karin Kestner, a Deutsche Gebärdensprache (DGS, or German Sign Language) interpreter and advocate for German deaf children to be taught sign, reported that Ms. Larsen's case "has had great sympathy in Germany."

    "In Germany," says Ms. Kestner, "most people think that the USA is a paradise for deaf people. And now they know that there is also a great problem."

    Members of other American disability groups also supported Ms. Larsen. While Deaf Culture proponents often reject the idea that they have disabilities -- that they are unable in any significant way, as they believe others identify as persons with disabilities are -- the same laws that we all use to challenge societal dis-enablement can be used to challenge discrimination based on hearing people's assumptions about what deaf people can -- and should -- do.

    On the evening of October 4, all of these people celebrated together. From ripples to waves, from one Grand Rapids family to an international community, people organized -- - and they rocked the world of those hearing people who wanted the courts to make a Michigan mom watch her kids being subjected to surgery she doesn't think they need.

    Joe Tevlin has not ruled out an appeal, and activists are continuing to monitor the situation. The GRDEAF_PROTEST list has not been dissolved.

    And Lee Larsen is just looking forward to raising her boys.

    Cal Montgomery, an augmentative communication user, lives in Chicago with a stuffed bear who often wears a t-shirt reading speech hearing language thought humanity. He refuses to share it with her.

    MDA's reasons for raising funds to bring Dr. Hoffmeister to Grand Rapids:

  • The deaf mother's expert witness should have the opportunity to testify in court in person.
  • All parents should have the right to decide whether or not their children should have elective surgery that is not medically necessary.
  • Cochlear implant surgery is not medically necessary.
  • Cochlear implants are not necessary for a deaf person's language and cognitive center of the brain to develop. Using Sign Language does allow these parts of the brain to develop.
  • State agency policies supporting a parent's right to make decisions should be applied equally to all parents, including deaf parents.
  • Deaf persons should not have to justify their reasons for the choices they make for their children until hearing people do, too.

    English text of organizer Jeannette Johnson's speech, delivered in her absence to Larsen supporters by Ms. Johnson's mother, Celeste Johnson:

    Ladies and Gentlemen,

    We have entered a new millennium. We have made great strides in advancing the rights of human beings. Society has evolved based on the population's morals and values, and we have established laws to reflect that. Yet, we are here today to protest a grave injustice. The court is being asked to Order two Deaf children to undergo elective surgery without the consent of their Deaf parents.

    The medical establishment has continually told us that being Deaf is a tragedy. It refuses to admit that American Sign Language is wholly sufficient to allow the development of the language center of a deaf child's brain and to allow the deaf child to develop full linguistic and cognitive competence, given each individual's potential. It refuses to admit that there are viable options other than a cochlear implant.

    Hearing educators, arrogant in their assumptions and who often work in concert with the medical establishment, have integrated Deaf people into hearing classes. Many Deaf students go through school without a bilingual education, therefore forcing them into a system about which they are unaware. Through social promotion, they are advanced on the basis of a lower standard than that in place for general education students.

    The social service agencies that exist to serve us, have taken it upon themselves to declare what is the best for us, without our consent. They have put blind faith in the educational and medical establishments that profit from the deaf's lack of education.

    Now, the judicial system, which exists to protect and uphold our rights and to enforce the law, is considering a decision that could undermine everything a democratic and free society stands for, and the rights we are accorded under that system. Contrary to what the medical and educational establishments desire for the judicial system and society as whole to believe, being deaf is not a tragedy. What truly is a tragedy, is the continuation of judgement and oppression of a minority group in a culture that claims to cherish multi-culturalism.

    We are not here just as Deaf persons, or hearing persons, or even as Americans. We are here together as human beings who value a democratic and free society, shoulder to shoulder, and peacefully saying, "We, the people, will no longer tolerate this cycle of injustice."

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