The Grand Rapids Case
Deciding what is in “the best interests” of deaf children
On October 4, 2002, a civil-rights victory was won in a Grand Rapids, Michigan courtroom. The case, involving a deaf mother and her two deaf sons, attracted international attention and drew an impassioned response from Deaf and disabled people across the world. A family-court judge denied a request from a court-appointed lawyer to have cochlear implants installed in the children over the objections of their mother, who had temporarily lost custody of them the previous year.
What would have been a straightforward, small-scale, strictly local custody dispute became an internationally-publicized Deaf-rights case, and the issues it raised touch upon some of the most controversial and troublesome in our community: what it means to be Deaf, being signing-Deaf versus speaking and hearing, the benefits of cochlear implants for deaf children, sign language as a language, how society judges deaf people who want to be Deaf, but above all, the issues of a mother’s right to refuse elective surgery for her child’s non-life-threatening condition, and the right of the court to violate parental rights when those rights have not been terminated.
Taking care of the kidsbut no access to ASL
The legal battle began when Lee Larsen of Wyoming, Michigan (a town south of Grand Rapids on the western section of Michigan, not far from the Lake Michigan shore) left her sons Kyron (approximately 3 years old at the time) and Christian (approximately 2) with a deaf friend in Baldwin, then traveled to Ohio for a week, without any way of being reached. The deaf woman taking care of the boys had other disabilities. After receiving a complaint from school officials that Kyron and Christian were being neglected, the state investigated, and removed them from Larsen’s custody, according to court records. Negligence charges were filed against Larsen in October 2001.
Judge Kathleen Feeney of the Family Division of the 17th Circuit Court of Kent County, in Grand Rapids, took temporary custody of the boys (that is, made them wards of the state and court), with Larsen’s consent. Feeney had them placed in foster care (administered by Bethany Christian Services) while Larsen began taking parenting classes, as ordered by the court, with the aim of regaining custody.
The Northview School District in Grand Rapids administers a Total Communication program that is ASL-affirmative, but lacked full-time openings. The boys were accordingly enrolled at Shawnee Park Elementary School, which offers an oral-aural program for deaf children (Grand Rapids Oral Deaf Program) that ignores ASL, the preferred language of the Larsen family and many other deaf people. Larsen had attended this program as a child.
Both boys are considered profoundly deaf; one has cerebral palsy. Larsen uses ASL as a primary mode of communication with them. Administrators at Shawnee Park Elementary claimed that the boys were falling behind their peers, most of whom already had cochlear implants or were scheduled to get them. The foster parents who had temporary custody of the boys communicated with them in speech; they evidently didn’t use any signing. Nor was signing used in the Grand Rapids Oral Deaf Program. It was therefore not surprising that the communication situation, as far as the boys were concerned, was poor. School administrators and the foster-care program suggested that the boys receive cochlear implants.
The court appointed an attorney, Joseph Tevlin, as guardian ad liteman advocate for the children. Unwilling to blame the foster parents for the boys’ inability to communicate with them, he sought to have them receive cochlear implants, on the school’s and foster-care agency’s recommendations.
In April 2002, Tevlin petitioned the court to order implant surgery for the boys. He did this despite Larsen’s long-standing objections, which she had already expressed to school officials. His position was that the boys were taken from Larsen because she was negligent, and, he implied, installing implants in them would somehow undo this neglect. However, Larsen’s parental rights were not terminated, and she went to court to regain custody of her sons.
According to Jon Hall of the Boston Globe: “No state agency supported [Tevlin’s] request. In fact, the Michigan Family Independence Agency, which oversees the children’s foster care, explicitly told the judge its policy is that ‘parents are the ones who decide whether or not a child in foster care should have elective surgery.’”
According to Michigan law, a parent has the right to refuse an elective procedure for her children, unless she has permanently lost her custody rights. Tevlin and Assistant Prosecutor Kevin Bramble sought to override Larsen’s parental rightsan act of extremely questionable legality. Larsen argued that if the court authorized the implants, it would be overstepping its authority over her children. “They are mine,” she said. “It is my decision, not the court’s.”
But the outcome was to be decided in court.
A crowded, visually noisy spectacle
The initial custody hearing began at Kent County Circuit Court in Grand Rapids on September 2, 2002, and continued through September 5. There were two court-appointed ASL interpreters and four lawyers. The gallery was thronged with Deaf people and hearing signerssupporters, advocates, friends.
The court didn’t make sufficient accommodations for interpreters for the crowd in the gallery. Arrangements had been made for interpreters only for the trial participants, although these were usually visible to the gallery crowd. No courtroom interpreters were stationed near the crowd, for their benefit. But since several professional interpreters were in the audience, they volunteered to keep their Deaf neighbors apprised of the proceedings.
At times, the spectacle of several impromptu interpreters and hundreds of Deaf people discussing the case in sign, although not aurally noisy, created a visual ruckus. As Theresa D. Mcclellan noted in The Grand Rapids Press:
“I’m deaf and I get along”
Larsen’s attorney, David Gersch, said that a recent hearing showed that she was making good progress in the court-ordered parenting classes. But, he asked, was she being set up to lose custody of her sons?
As Larsen testified at the September hearing, she initially read up about implants and asked around, but decided that she didn’t want them for her sons. She understood the pros and cons of implantation, and had considered the possibility for the boys, but believed that the disadvantages outweighed any possible advantages. She testified that she had friends who received implants as teens and adults, and were unhappy because the implants effected no improvements in their hearing or speech. She communicated her objections about implants to the Shawnee Park Elementary officials.
Much of a deaf child’s success with an implant depends on close interaction with parents, and constant monitoring, feedback, and reinforcement of good speech patterns. This requires tremendous commitment from the parents. As Larsen and Gersch argued in court, if the boys received implants, they would need an excellent speech-and-listening model at home to reinforce their auditory progress, and she, as a deaf person, could not be that model. Gersch argued that it would be impossible for Larsen to comply with the post-surgical regimen. Although she could talk, her speech was not particularly clear. Forcing the boys to undergo implantation could give them oral abilities that she lacked, thereby leaving her open to additional charges of neglect: He said, “What’s she supposed to do when she gets back two kids with whom she can’t communicate?” Should Judge Feeney approve the surgery before returning the boys to Larsen, she might end up losing custody of them after all because she would be unable to meet their communicative needs.
Larsen testified that she understood that implants appeared to be a good idea to hearing people, but not to all deaf people. She didn’t want to choose implants for Kyron and Christian; if they were to have implants, she wanted it to be their decision alone, a decision they could make when they were older. “But I want them to grow up with a strong self-esteem, not trying to be something they are not,” she said. “I want them part of the Deaf culture.”
On September 5, the fourth day of the trial, Larsen testified in vigorous, emphatic ASL and speech, her voice shaking with emotion “I should decide. They are my flesh and blood. I am deaf. God made them deaf. I do not want them to have implants. It is not safe.”
Bramble asked Larsen how her children would manage in the hearing world without implants. “Look at me,” she replied. “I am deaf. I am in the hearing world and the deaf world . . . I’m deaf and I get along.”
Do implants boost language development?
Tevlin believed that the boys should get implants because they would benefit from them, especially in terms of oral-language acquisition. And not just that. “It would give them access to greater opportunities educationally. Greater opportunities economically when they get olderto find employment. It would give them the opportunity to live a healthy, happy, normal life,” he declared on the Wolf Blitzer Report. The arguments he used to support his beliefs infuriated Deaf people and cross-disability advocates: that without the implants, the language-processing areas of their brains wouldn’t reach full development; the boys wouldn’t be able to reach their full potential.
He argued in court that there was a “window of opportunity” between birth and age 4, the optimum language-development phase, when the boys would most benefit from receiving implants, and that the window was closingtime was running out. (The boys were now 3 and 4 years old.) The boys, he argued, “are losing; they are not gaining language.” Language, for Tevlin, meant oral language; signing apparently didn’t count. He presented multiple expert witnesses who testified that implants are crucial for a deaf child’s language developmentthat (once again) without implants, the boys’ brains wouldn’t develop normally.
The more they went on about the beneficial effects of implants on deaf children’s cognitive, intellectual, social, and linguistic development, and the necessity of implants for the Larsen children’s happiness, normality, and success in the “hearing world,” the angrier Larsen’s supporters got.
When Tevlin defended his actions in petitioning the court to overrule Larsen’s objections, he asked, rhetorically, “Is it neglect not to have a cochlear implant when the bulk of the research shows everyone benefits?”
Gersch emphatically responded that it was not. It was Larsen’s right to make this decision for her children, he argued, and moreover, their deafness by itself was not a handicap and didn’t need to be fixed. He agreed with Tevlin that they would benefit from having better educational support, but also agreed with Deaf advocates that deafness isn’t something that needs to be fixed.
Kelly Robinson, Larsen’s ex-husband, now living in California, said through his attorney, Gary Kovitz, that he also opposed implantation surgery on the boys.
Although parents who had chosen to give their deaf children implants were ideologically on the opposite pole from parents of deaf kids who refused to do so, they could all agree on this basic issue: that, in this situation, the court had no right to overrule a parent’s decision. It is significant that even parents who had chosen to give their children implants disagreed with Tevlin and Bramble’s position. They participated in the letter-writing campaign to Judge Feeney, expressing their views. Several deaf people who use implants participated in the climactic October 4 rally.
At the time, many felt that Feeney was favorably inclined towards Tevlin and Bramble’s argument. Representatives of disability-rights groups expressed their concern that, should Feeney rule in favor of Tevlin, as Boston Globe reporter Jon Hall put it, “the case could set off a rash of state or medical officials using temporary wardships to overrule family decisions.”
“A civil-rights issue”: reflections on the case
Lois L. Van Broekhoven, an interpreter-referral specialist for Deaf Inc., a community resource, told Theresa D. Mcclellan of The Grand Rapids Press, “The cochlear implant is to a large degree a denial of deafness, and the deaf community is quite torn on this issue.”
In a statement posted on the E-Deaf and Hard of Hearing Website, Claudia Lee of Deaf Community Action Network (DEAF C.A.N.!) wrote: “[A] larger issue is at stake. Since the parental rights are not permanently terminated, should the court violate the rights of the parents to decide not to have the surgeries performed by ordering these ‘ELECTIVE’ surgeries while they are wards of the court? This is not a life-threatening situation. Should a court make a life-long decision while having temporary custody of the children?” She was concerned about the possible legal implications to all disabled people, should the court rule in Tevlin’s favor. Would the courts overrule a parent’s objections against performing elective surgery on children with other disabilities? Would the parents’ right to decide be taken away from them, too? “Can a court take away the rights of the parents who are concerned with the surgical risks because a professional with clout states it is the best interest of the child? 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.”
In a release posted on the Website of iCan, Inc. (a cross-disability advocacy group based in Birmingham, Michigan), Lee wrote: “Tevlin is suggesting that without implants, the kids won’t be able to work up to their maximum potential, which is an insult to the deaf community. It perpetuates the biases of society, suggesting you’re not as good as us if you’re not like us.”
The Michigan Deaf Association rebutted the state’s expert witnesses, noting that speech is not equivalent to language. It is access to a language, not access to sound and speech alone, that ensures proper development of the brain. Sign language, a visual language, qualifies for the purpose, and therefore, Larsen’s intention to communicate with her sons in ASL was sufficient.
Richard Wexler, Executive Director of the National Coalition for Child Protection Reform, issued a statement on USA Newswire that Larsen’s children were taken from her “for what appear to be pretty flimsy reasons.” What did their removal have to do with the issue of whether or not they should get implants? He put it thus: “The issue is not whether the implants are good or bad. The issue is who is in the best position to make that decision, the parent or a court full of strangers.”
This wasn’t a case of a court wanting to intervene in a life-threatening situationsay, ordering a blood transfusion for an injured child whose parents refused to allow it from religious scruples. If Tevlin and Bramble won, it would set an ominous precedent for other parents of deaf children who didn’t want them to receive implants . . . and for parents of children with other disabilities whom the court might think could benefit from other elective procedures. Once the courts started meddling, where would they draw the line?
The final push
Testimony, with a final expert witness, was to continue on October 4. In the meantime, Judge Feeney ordered that the children be evaluated for implants, and that funding be located to pay for the procedure. Nonetheless, she told the court, this did not mean that she had already made up her mind about the case. “The testing is no indication of how the Court will rule,” she said. “The Court has not made up its mind.”
Judge Feeney announced that she had received hundreds of E-mails on the issue (an estimated 300+ as of September 5), but was unable to consider them since they had not been submitted in court. They were ex parte communications—outside of the court.
Legal amicus curiae (“friend of the court”) briefs were filed for her consideration by Deaf-rights and disability-rights advocacy groups. (These were admissible for consideration.) A report in E-Michigan Deaf and Hard of Hearing People noted, “In addition, the state’s Family Independence Agency has flipped-flopped its position from supporting the surgery to opposing it, according to the attorneys in the case.”
Larsen’s attorneys needed an expert witness to counter the arguments of Tevlin and Bramble’s crew. Accordingly, Gersch invited Robert J. Hoffmeister of Boston University, a nationally-known Deaf Studies specialist and CODA (adult child of deaf parents), to testify.
Dr. Hoffmeister began testifying via telephone at the September 5 hearing, and was scheduled to continue at the final hearing on October 4. Larsen’s attorneys felt that Hoffmeister’s testimony would have more weight if he gave it in person. Money was needed, and quickly, to bring him from Boston to Grand Rapids. Accordingly, the Michigan Deaf Association implemented a swift, but effective, fundraising campaign, soliciting individual contributions of money from friends and supporters, and brought Hoffmeister to the final hearing. Other organizations and agencies that participated and assisted with the grassroots efforts were DEAF etc., iCan, Inc, and DEAF C.A.N.!
On October 4, Hoffmeister completed his testimony. He noted that he had visited the Larsen boys for an hour in their foster home, and had seen the foster mother using speech to communicate with them, no signing at all.
He told the court that there is no guarantee that implants would benefit the Larsen boys in their language acquisition, or that it would improve their schoolwork. “It’s all a roll of the dice, actually,” he said. “That’s what the research shows.” While there is evidence that implants might benefit children who had the experience of hearing before becoming deaf, he said, there would be minimal benefits for Kyron and Christian, who were born deaf.
Harlan Lane, the eminent Deaf Studies researcher and advocate and Hoffmeister’s colleague at Boston University, agreed, claiming that born-deaf children generally don’t do well with implants, and noting that there is “promising research” into restoring natural hearing—but cochlear-implant wearers will not be able to benefit from it in their implanted ears. The effects of implantation surgery are irreversible, since the operation destroys whatever residual hearing there might be in the sensory tissue of the inner ear when the hole is drilled and the electrode-array wire inserted into the cochlea.
The Grand Rapids case drew international attention and prime-time publicity. A segment on CNN’s Wolf Blitzer Reports (October 4, 2002), for example, focused on the controversy. The case also drew a passionate response from the community. There was an extraordinary surge of grass-roots support and involvement from the Deaf and cross-disability communities. Deaf students and adults, parents of deaf children (with and without implants), advocates, and leaders from across Michigan and beyond not only sent letters and E-mails to Feeney, they attended the hearing en masse. The strong interest shown by the public may have had a positive effect on Judge Feeney’s decision.
Jeannette Johnson of NTID/RIT, daughter of interpreter-advocate Celeste Johnson, who was actively involved on a local level, started a grassroots movement of her own; she organized a protest rally near the courthouse, and set up the GRDEAF_PROTEST newsgroup on Yahoo to coordinate the protest, disseminate information, and function as a central source of updates. Philip J. Moos’ USA-L News service also carried useful coverage on the case.
News and commentary on the case was also carried on the Websites of numerous Deaf-agencies and cross-disability-rights organizations and groups.
The showdown starts
At the beginning of the final stage of hearings at Kent County Circuit Court on October 4, Judge Feeney told the court that the large turnout was unexpected. So many people turned out to attend the hearing that there wasn’t enough room in the courtroom to accommodate them. The hearing was delayed while a clerk redirected the crowd to an “overflow room” on another floor where they could watch the proceedings via live video feed on a screen. Four professional interpreters from the audience—Celeste Johnson, Barbara Hinson, Jeff Oliaz, and Lois Van Broekhoven—accompanied them, and made the video-screened testimony accessible. What the court wouldn’t do, volunteers did.
Those in the overflow room discovered that they were, in some ways, better off than those in the courtroom gallery, since they weren’t subject to the strict rules of courtroom decorum. They were free to express themselves openly. Express themselves they did. They cheered Hoffmeister and gave his testimony “waving hands,” and whenever Tevlin or Bramble made a remark they considered insulting, let their feelings be known.
Rallying in the rain
On Friday, October 4, 2002, during lunch recess on the last day of the hearing, a rally was held in Calder Plaza to protest governmental interference in Larsen’s parental rights. More than 200 steadfast supporters braved heavy rain to attend the rally; many of these also had attended at least some of the hearings.
Since Calder Plaza is clearly visible from the 10th floor of the courthouse, where Judge Feeney’s courtroom and chambers were located, the community believed that the spectacle had an undeniable effect on the court personnel. In announcing her decision later that day, the judge mentioned the strong efforts made by those in the Deaf Community. Even though she hadn’t been able to consider the many letters and E-mails she had received, she couldn’t ignore the huge turnout of Deaf people in her courtroom, and she could likely see the rally. The presence of the community, and the strength of its opinion, was something that she couldn’t ignore.
Many local supporters volunteered their servicesBarbara Hinson, Paul Fugate, Claudia Lee, those who accompanied Northview students. Claudia Koslosky, whose son attended the TC program at Northview, arranged to borrow the school’s portable stage. She and Bruce Partridge, “a long-time ally of the Deaf Community,” set it up and took it down. Their generosity enabled the speakers to be seen clearly by all attendees.
Nancy J. Bloch, Executive Director of the NAD, was among those who addressed the crowd in Sign, with an interpreter voicing for her into a microphone. “We’re here to show what we can do. This isn’t about implants, this is about parents’ rights.” Other speakers, or rather signers, at the rally included Rich Harkleroad, President of the Michigan Deaf Association, and Ron Swartz, Chairman of the Board of Deaf Community Advocacy Network (DEAF C.A.N.!). They received an enthusiastic response from the crowd.
Jeannette Johnson, the rally’s prime organizer, wasn’t able to attend, but her mother, Celeste, signed her rousing speech to the crowd, which responded with cheers and fervent Deaf applause.
Racing against time: the amicus brief
Of crucial importance to the outcome was the amicus curiae brief filed by Attorneys Calvin Luker of Oakland County and Amy Maes of Michigan Protection and Advocacy Services According to Guyapi of DeafBase, Luker’s wife and assistant, Tricia, “worked tirelessly to collect and synthesize information from families of persons with disabilities, to provide MPAS the impetus to fund and support a compelling amicus brief.”
Luker explained to Guyapi that he had spoken with Feeney on September 30 about MPAS filing a brief.
On Wednesday, October 2, Amy Maes, MPAS’ Director of Advocacy Services and Luker’s co-counsel on the motion, received a call from Feeney’s office that Feeney would accept an amicus brief from MPAS, “effectively granting our motion to file one without requiring us to show up and argue it. But Amy was told that MPAS had to file its brief by Friday noon, so Judge Feeney could review it before making her decision on the case in the afternoon.”
Mares and the support staff at MPAS immediately began preparing a brief. Cutting short their visit to Washington, the Lukers immediately flew back to Michigan, and working through the night with Maes, finished the brief, submitting it to Feeney before the deadline.
Larsen’s supporters believed that the brief had, Guyapi’s words, “an unmistakable impact on the outcome of the case.”
After 5 days of testimony, Judge Feeney ruled that the state could not require the children to undergo surgery. However, she said she had been considering the issue since the hearing started. “The court has no doubt it would be in their best interest to have implants, [but] has paid close attention to [Larsen’s] adamant right to decide and not to participate in after-care,” if the implants were ordered against her will. She noted that the law was clear here: courts cannot intervene in parents’ medical decisions for their children unless there is an emergency, and implants wouldn’t qualify as an emergency measure. She added that would decide whether to order implantation surgery for the boys if Larsen permanently lost custody of them. For now, she would halt her order to have them medically evaluated for implants. She also suggested that they be enrolled in Northview’s TC program.
As Mcclellan noted, “As it became clear that the hearing would end in her favor, the 30-year-old Larsen . . . sat taller in her chair and started to grin.” She “nodded her head” throughout the ruling.
But she wasn’t at all pleased by one of Feeney’s statements: While evidence suggested that implants would be beneficial to the boys, said Feeney, “there is a concern that [Larsen] might shun them.” Larsen reacted with disbelief. After the hearing, she said indignantly, “I would never shun. They are mine. I teach them.”
Although Tevlin emphasized the urgency of giving the boys implants immediately, claiming that the younger implantees are, the more benefit they can derive, Feeney ruled that the boys’ situation didn’t constitute an emergency.
Mcclellan also noted: “During her comments from the bench, Feeney addressed the deaf who organized and rallied, saying their efforts showed how much they care. She asked them to put their energy into the foster care system and providing homes for deaf children.” (We are sure that a good number of them would be happy to provide such homes.)
When Judge Feeney issued her ruling, Larsen cried with relief. According to Mcclellan, “Outside Feeney’s chambers, Larsen’s supporters jumped up and down, pummeled backs and talked excitedly in American Sign Language. Some cried.”
Gersch was delighted. “This feels good,” he told Mcclellan. “This was an exhilarating case because there was so much interest and passion.”
Larsen was expected to regain custody of Kyron and Christian in two months, and a final hearing was scheduled for early December. She told reporters that looked forward to reuniting her family.
Tevlin told the press that he hadn’t decided whether to appeal Feeney’s ruling. So perhaps the last chapter in the drama is still incomplete. Grassroots organizations continued to monitor the case. Instead of dissolving her GRDEAF_PROTEST list, Jeannette Johnson continued to maintain it. It might be needed again.
Lee Larsen did not regain custody of her sons. She moved to Ohio. Kyron and Christian Robinson were adopted and both received cochlear implants. We don't know if they were adopted by the nonsigning foster parents, nor if they were allowed access to ASL in school.
Jeannette Johnson calls the Grand Rapids court case “a hollow victory.”
Claudia Lee, Deafness Resource Consultant, Instructor, and Certified Interpreter at Eaqual Access Communication, Inc., commenting on the outcome, says: “How sad that educated individuals do not see that the key thing to a child’s development is communication . . . not just hearing or saying a word, but knowing what the word means because of language. . . . How sad to deprive a child of language and be the cause of educational delays because of this deprivation.”
We hope that Kyron and Christian will rejoin the Deaf Community when they’re old enough to choose for themselves, and that they will someday tell their own story.
Richard Wexler, “Child Advocacy Group Blasts Attempt to Force Implants on Deaf Foster Children,” National Coalition for Child Protection Reform, October 3, 2002
Theresa D. Mcclellan, “Deaf mom fights to keep kids from cochlear implants,” The Grand Rapids Press, September 6, 2002
“Cochlear Implant Court in Grand Rapids,” in E-Michigan Deaf and Hard of Hearing People, News, September 2002
Statement from Claudia Lee of Deaf C.A.N.!, in E-Michigan Deaf and Hard of Hearing People, News, September 2002
“Child Advocates Oppose Forced Implants on Deaf Foster Kids”/“Child Advocacy Group Blasts Attempt to Force Implants on Deaf Foster Children,” U.S. Newswire, October 3, 2002
Karen Correll, “Cochlear implant case focuses debate on parental rights,” iCan! Website, October 4, 2002
Cal Montgomery, “The Cochlear Implant Trial,” Ragged Edge Online, October 4, 2002
Theresa D. Mcclellan, “Deaf mom gets the ‘no’ she wants,” The Grand Rapids Press, October 5, 2002
Jon Hall, “Mich. judge rules deaf boys needn’t undergo surgery,” Boston Globe, October 5, 2002
Guyapi, “Grand Rapids Cochlear Implant Case,” DeafBase
“Deaf Mother Wins Court Case Over Parental Rights,” DHHSC (Ronaoke, Virginia) Website, with thanks to NVRC
Cal Montgomery, “Ripples, A Tide, An Ocean,” Ragged Edge Online, November 2002
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