Braille Monitor                                                 November 2010

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Whose Child Is This if Mom and Dad Are Blind?

by Gary Wunder

Blake Sinnett and Erika Johnson sit waiting.In May of 2010 Blake Sinnett and Erika Johnson rejoiced as they prepared to celebrate one of life's most blessed events, the day they would become the parents of a healthy baby girl they would joyfully name Mikaela, which means “one who resembles God.” The couple who arrived at the hospital were blessed with youth, good health, and brains. The only unusual thing about them was that they were blind. The birth of Mikaela was routine. She came into the world weighing six and one-half pounds and was nineteen and a quarter inches long. When she had been cleaned up, she was brought to her mother to be fed.

As she struggled to help her baby latch on, Erika felt that something was wrong, so she called her nurse, a woman identified as Nurse Dixie, to ask if Mikaela was actually nursing. The nurse reported Mikaela was starting to turn blue and helped Erika reposition her. Nurse Dixie showed Erika how to position her fingers above Mikaela's nose so Mikaela could breathe while nursing. Noticing that Erika was upset by problems with her first attempt to nurse, Nurse Dixie assured her that new mothers often need help mastering the technique and that now she and the baby were doing fine.

Imagine the couple's shock and dismay when, some four hours after their daughter's arrival, they were met by a social worker from the Children's Division, Protective Services Unit, a woman named Tia Wilson. She had been summoned to the hospital when Nurse Dixie reported Mikaela's birth to parents who were blind. Ms. Wilson first wanted to know how well each member of the couple could see. Hearing that vision was minimal, she next wanted to know how they would keep track of their newborn daughter; how they would know when she was hungry, wet, or dirty; how they would know if she had a temperature; and, last, how they would transport her if she needed medical care.

The parents answered these questions respectfully and as thoroughly as they could. The couple would know where their daughter was, at least while she was very young, by remembering where they had put her; later they would know where she was by sound. They would know if she was hungry because she would cry and because they could both tell time and would know when she had last been fed. The question about how they would know if she was wet or dirty seemed too obvious to explain, but courteously they addressed the issue. They would know if their daughter had a temperature by using their sense of touch, and for more precise measurements by using a talking thermometer. They would decide on how to transport her for medical care depending on the reason for that care. If the doctor visit was routine or for treatment of a cold, they would go by cab. If she had suffered an injury or life-threatening illness, they would call an ambulance. The bottom line for the social worker was that the answer to the first question was the only one that mattered: How much can you see? Before Erika was discharged, that one simple question became two: How much can you see, and will someone with sight be present to supervise your care of this baby twenty-four hours a day, seven days a week?

Given that there would be no sighted supervision of the child, when it came time for Erika to be discharged, she was told that her baby would not be going home with her but was being taken into protective custody by the state. The social worker's reasoning: "I just can't, in good conscience, send this baby home with two people who are blind."

Erika was discharged on Sunday, two days after Mikaela's birth. By Monday I was seeing messages from our NFB parents’ list and a note of concern from Mrs. Maurer. The problem was that no one was giving me a name, a city, or a phone number I could call. I do not know whether this reluctance came from Erika and Blake or whether some of our folks fell into the trap of believing we labor under the same rules of confidentiality as state and federal agencies. It wasn't until late Tuesday afternoon that I received a telephone number and could actually talk with the blind couple directly. The delay was regrettable because they had a hearing scheduled for the following day.

In our first conversation Erika and Blake were very appreciative that I cared enough to call, but they weren't at all certain they needed our help. They seemed to believe that what had happened thus far was so outrageous that anyone in authority who had to deal with the issue would see the foolishness of the social worker, and their child would be returned. In their minds there was no need to cause a big fuss, involve a bunch of outsiders, and risk rocking the boat. "We just knew someone would look at what the social worker had done and would give us back Mikaela," Blake said later.

I had doubts about these two young people’s going it alone against a social service agency that had already taken their child, but experience has taught me that the worst thing an advocate can do is take control from those whose lives are the most affected. When the advocate decides he knows more than the people he's trying to help, he has given them yet another reason to believe someone doubts them and wants to take things out of their control.

My fear was that the social service agency that had taken Baby Mikaela would present its action to the judge as a prudent exercise of caution and that the judge's initial response would be to defer to the experts until more facts were available on which to make a decision. This is, in fact, what happened, and Blake and Erika called me the next day to say that they were ready for our help.

The outrageous behavior of the hospital and of Children's Protective Services seemed so bizarre that our first job was to see if blindness was really the issue or whether it was being used to enlist the help of the NFB. For every case brought to us in which blindness is the central issue, in at least five more blindness has next to nothing to do with the action the caller is complaining about. Shelia Wright, our first vice president in Missouri, and her husband Jeff visited with Blake and Erika. Her report was that they were normal, intelligent people and that there was no reason to believe they would have any unusual problems in parenting their baby daughter. Next came the hiring of Amy Coopman, a Kansas City attorney who worked with us in winning two other cases. In the first case she helped Larry Murphy when the Missouri Highway Department passed him over for promotion because he was blind. In the second she helped Grace Haner, who was fired after twenty years of service because her new supervisor thought having a blind person working around patients was too dangerous.

The first task we assigned Amy was to look at records from both Centerpoint Medical Center and the Children's Services Division to see what they said about Mikaela's birth and Erika's stay. Amy also visited with the couple so she could hear first-hand what had happened to them. The records from the hospital confirmed the birth, the problem in the first attempt to breastfeed Mikaela, and the subsequent progress after being shown how to nurse correctly. Records from Children's Protective Services also revealed nothing other than blindness as a reason for removing Mikaela from her parents and placing her in protective custody with a foster mother.

Since Rehabilitation Services for the Blind (RSB) in Missouri is under the same department as the Children's Division, we contacted the head of the agency, Mark Laird, to enlist his help. He was surprised and angry and offered to assist in any way he could. He said he would start by talking with the director of the Children's Division, which gave us some hope that we might be able to avoid the legal system. Like Erika and Blake, we were wishfully thinking we could get a reasonable person to take a look at this situation and say, "This outrage will go no further," but such was not to be.

In cases involving child custody and the Protective Services Unit, the people deciding cases are called commissioners, not judges. On June 18 a hearing was held before Commissioner Martina Peterson, but its purpose was not to determine the placement of Baby Mikaela but to review the existing placement to ensure it was safe. Though the commissioner could not solicit or admit evidence, she did listen and ask questions as our attorney, representatives of the Children's Division, and Rehabilitation Services for the Blind discussed Mikaela and her parents. The commissioner appeared to be angered by her inability to review the placement decision and made comments such as "Certainly these aren't the only blind people who have had children," "I can't believe this is the first case in Kansas City where we have had to deal with blind people raising their kids," "Who are we to tell these people they can't take care of this child simply because they are blind?" It didn't hurt that the teacher assigned by RSB to help Blake and Erika address any parental skills the Children's Division might question was herself the blind parent of sighted children.

Much to our distress the commissioner reviewing this case said she had a vacation scheduled. We had the option of waiting for her return or transferring the case to someone else. The call was a hard one, but the commissioner had seemed so perplexed and angered by Mikaela’s seizure that we decided to wait for her return. That decision would add almost a month to Mikaela's separation from her parents, so the question we had to answer was whether we were better to suffer this delay or risk drawing a judge who might be less sympathetic to the injustice that had befallen this family. Given the commissioner's reaction, uncertainty about how long it would take to transfer the case, and no assurance we would save any time by reassigning the case to another commissioner, our attorney’s recommendation was to wait for the current commissioner to return, and this we did.

Before her vacation the commissioner wrote an order requiring that Mikaela see her parents at least three times each week and that Erika’s milk be used for Mikaela's feedings. Although it did not appear in the written order, the judge also suggested that the Children's Division, Protective Services Unit, provide some unsupervised visitation.

Interest from Federationists continued to build as we approached the national convention. People wanted to know what they could do to stop this outrageous behavior. Most wanted to know why they hadn't heard about this disgusting incident in the press and offered their help to see that the story was picked up. Again we had to make a hard choice. We were either going to follow the procedure outlined in Missouri law and look for justice from that system, or we were going to go outside it and hope that the press didn't harden the stance of the Division or cause the commissioner to believe we were trying to exert undue pressure. We decided to work within the system, but this case was so outrageous that we would talk about it in the blindness community and would prepare for a full-court press for media attention if Mikaela was not returned by the legal system.

By the time of the national convention we had received over one-hundred inquiries and offers of help. The board of the NFB of Missouri had already voted to take the case with President Maurer’s support. The Board also decided to discuss the case openly at the convention and to ask those wanting to help if they would donate to a fund specifically to bring Mikaela home. As Federationists would expect, the membership responded, and we raised nearly $3,000 while in Dallas.

At the convention the buzz about Baby Mikaela was everywhere. I was approached by seasoned members of the Federation who were saddened by the thought that we were still fighting the battle to be parents--one they thought had been won years ago. Young people were almost desperate in their plea that I tell them this was all a big misunderstanding. Most who approached me had their own suppositions about what had really happened. One group conjectured that what they had heard and read was little more than an urban legend created on the Internet and somehow linked to my name. A second school of thought was that this was a real incident but that it had been recirculated from early Federation history. As some of the young folks said, “When we first heard about this, we thought it had happened a long, long time ago--you know, like back in the eighties." I couldn't help reflecting that the eighties, that long-ago time in their lives, didn't seem so long ago to me. Back then we were fighting for the right of blind parents to adopt children, and I was the young guy waiting for his first child and trying to answer those questions about how a blind man could take care of an infant. It is easy to understand why the young people who approached me were so upset. Some were engaged and others newly married. Children were definitely on their minds, and they were rightfully afraid.

For Blake and Erika times were hard. Erika tried to use a breast pump to provide milk for Mikaela, but, when Mikaela was brought for the ordered visitation, Erika would learn she had just been fed and their time together would be spent watching her sleep. Without the stimulation of a nursing baby, Erika's milk stopped flowing. Visitations were supposed to occur at least three times a week, but Blake and Erika were told by their new social worker, Tara Perish, that she had other clients who also needed her attention. "You are not the only parents I serve, and you are getting way more than any other parents I see," she told the couple. Mikaela's foster mother was more helpful in seeing to visitations than the social worker and openly expressed surprise at why she was caring for Mikaela. As grateful as Blake and Erika were for the visits made possible by the foster mother, the experience was painful. "The most hurtful thing was to hear someone else report to me about the progress of my child,” Erika said with sadness. “Someone other than me saw her first smile and heard her first little laugh."

Erika and Blake said that during Mikaela's absence one of the most disheartening things was the reaction of friends and neighbors. “I was really criticized because people kept saying to me that there must be more here than meets the eye,” Erika said. “They said The baby must have been born with drugs in her system. Some said accusingly that I must have something wrong that they just didn’t know about. A few even asked if I had mental problems I hadn’t shared.”

Between the national convention and the day of the trial, we wrestled continuously with the issue of publicity. With the passage of almost six weeks since Mikaela's birth, people started asking if the story we were telling was really true, and, if it was, why wasn’t it being covered by the press? Why were we waiting so long? Why didn't we organize a protest, call on political officials, and expose this shameful event for all to see? Under Missouri law the path for resolution of protective custody cases is clear-cut, and there is little opportunity to do anything beyond following the prescribed procedure.

The hearing was scheduled for Tuesday, July 20, at 3:00 p.m. when at last we would be able to argue for Erika and Blake’s right to parent Baby Mikaela. On Monday our lawyer Amy received a call from Protective Services indicating an agreement might be in the works. She waited for the text to be faxed, but nothing arrived. On Tuesday all of us prepared to attend the hearing. Shelia Wright and her husband Jeff traveled to meet us at the airport and join us at the trial. My wife Debbie and I caught an early van for the Kansas City Airport, and just before arriving we got two pieces of news. One was that a fax had been received at 11:00 a.m. saying custody would be granted to Blake and Erika. The second was that at 9:00 that morning the social worker had delivered Mikaela to Blake and Erika along with the message that, though she couldn't say for sure, she thought the division was dropping the case.

Since we would not have our day in court, we thought it was now time to talk with the press. Coverage on two television stations as well as two days of exposure in the area’s major newspaper, the Kansas City Star, was uniformly positive. All of the adults had plenty to say, and we were widely quoted, but what won the hearts of readers and viewers was the picture of Mikaela peacefully sleeping in her mother's lap.

Mostly members of the press understood, were angered by, and reported the injustice which took place when a baby was taken because her parents were blind. The one question we all had trouble addressing civilly was "Isn't there a silver lining here in that Children's Services returned the child without having to go to a hearing?" Our polite but firm response was "No way." By law, cases of this type must be addressed within sixty days. Fifty-seven of those went by while Mikaela lived with someone other than her parents. The Children's Division did not take advantage of the resources we offered to teach them about blindness. They did not turn to their sister agency, Rehabilitation Services for the Blind, which could have provided countless examples of blind parents successfully raising their children. They did not expedite this case to encourage Mikaela’s bonding with her parents. They waited until the very day they would be forced to justify their actions to an openly skeptical commissioner before returning Baby Mikaela to where she should have been all along. They have never apologized to the family for the disruption they caused and have never offered one cent to compensate the blind of this nation who came together to defend Blake and Erika's right to be parents. Silver lining: hogwash! The bureaucratic process moved at a snail’s pace while two capable parents missed the first two months of their baby girl's development.

"Once we had Mikaela back home, the same people who had questioned our fitness as parents began reminding us that they had supported us all along and what an outrage it was that someone would take our little girl," Erika says. "Some of them have suggested there might be money in this for us and have reminded us that they were with us all along. They ask us to remember how often during Mikaela’s absence they had said the hospital and the agency were wrong. I’m so tempted to confront them about what they really said before--like the issues that just hadn't come out or my own mental fitness. Instead I just smile and let them admire our baby and listen as they tell us how beautiful she is,” she says.

When asked what it is like to have Mikaela home, Erika says, "You know, I've heard some mothers complain when their baby cries at night and gets them up every two hours, but my first thought when Mikaela cries in the night is that she's crying for me, and now I'm the one who gets to take care of her. I don't mind getting up. It's a lot easier than it was when I was lying awake worrying whether she would ever get the opportunity to know us as Mom and Dad. Now we see the things she does. We'll be the ones to see her crawl, to hear her first words, and to watch as she learns to walk."

Baby MikaelaNow that Baby Mikaela is home, where do we go from here? Getting her home has cost $10,000, but nothing in the law has changed to prevent something like this from happening next week or next year. The staff at Centerpoint Medical Center needs training. The Children's Division needs to learn much more about blindness, not only to protect other blind parents and their children, but to ensure that the agency can spend its time dealing with the real social needs it was created to address. This case needs to be considered by the state and federal agencies charged with protecting the civil rights of blind people, and their findings need to be a matter of record. The constitutional rights of Erika and Blake must be asserted and be reflected in case law. Finally, the statutes of Missouri must be changed so that the presumption is not that blind parents are incompetent until proven otherwise, but that they are presumed capable until some event demonstrates them to be abusive or negligent—the same standards we would apply to parents with sight. Our legal options are clear. We are firm in our resolve to do more than just bringing Baby Mikaela home. We want history to record that the outcome of this struggle not only returned a little girl to her parents, but set the stage for changing the way blind parents are treated throughout the land.

In case the narrative got a bit confusing, here is a note from Amy Coopman and the actual work files listing the chronology:

The documents I received from the Children's Division reflect the following chronology of events:

May 21, 2010: Mikaela born; Nurse makes hotline report to DFS at 3:15 p.m.
May 24, 2010: Mikaela discharged from hospital and placed in foster care.
May 25, 2010: Petition filed by juvenile officer.
May 26, 2010: Protective Custody Hearing (initial detention hearing); note that caseworker informs Johnson and Sinnett of hearing, but does not inform them of right to be represented by an attorney; court order reflects that attorneys will be appointed for mother and father.
June 16, 2010: Pretrial Hearing; I attended with Johnson and Sinnett; we denied the Petition allegations and requested immediate removal of Mikaela from foster care and placement with parents; no other evidence or testimony allowed for submission; case set for adjudication (trial) on July 20, 2010 (by law, the adjudication must be set within 60 days of when child is removed from parental care; here it was scheduled on the 57th day).
July 20, 2010: Adjudication set for 3:00 p.m.; at 11:00 a.m. the juvenile officer faxed me the Voluntary Dismissal.


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