The Marketing of Justina

After a year of review hearings keeping Justina Pelletier in foster care, the dependency court judge is due to give a ruling Tuesday on motions he heard at a March 19th hearing. It is expected he will transfer the dependency action to Connecticut and Justina will be transferred to a treatment facility near Tufts. I have lived with Justina in my thoughts for a year and I tell her story to all who will listen. What Boston Children’s Hospital and the State of Massachusetts is doing to Justina and her family is deplorable. People need to take notice, educate themselves, speak out and keep the conversation going in order to stop this from happening to any more children. People need to get the message and spread the word. But what happens when that message gets marketed in a manner which is not helpful to the cause? Is the recent marketing of Justina Pelletier a good thing?

If you are unfamiliar with Justina Pelletier, she is fifteen years old, suffers from a little known disease and has spent over a year in the custody of the Massachusetts Division of Children and Families (DCF), mostly as a patient in the psychiatric unit at Boston Children’s Hospital (BCH). She was removed from her parents after an ER doctor at BCH disagreed with Justina’s mitochondrial diagnosis and treatment plan. She was under the care doctors at Tufts in her home state of Connecticut and fell ill with the flu while visiting Boston. In the span of less than 24 hours, BCH psychiatrists examined Justina and made a determination she suffers from a mental disorder, caused by over-attentive parents who were over-medicating her with an assorted batch of supplements. When the Pelletiers refused to sign a treatment plan requiring them to dramatically change their daughter’s course of treatment, DCF was called and Justina was placed in the custody of the State of Massachusetts, where she remains.

If you wish more history on the Pelletier case, the Boston Globe has been following Justina’s story for months, as has Fox Connecticut and Glenn Beck.

Since early days of Justina’s confinement, the pediatric psychiatrists and BCH have been targeted by advocates. The psychiatrists misused their privilege by making a medical recommendation to DCF and Dependency Court guaranteed to get Justina removed from her parents, with medical power of attorney to the State. This procedure was not new to these particular doctors or BCH; it had been done before. The psychiatrists are able to use these kidnapped patients in their somatoform disorder studies with the luxury of no interference from parents. They are only accountable to the State and the State will always bow to their professional recommendations.

Advocates have also focused on raising the awareness of mitochrondrial disease. The best way to help patients like Justina is to make the basics of mitochondrial disease common knowledge. The reason Boston Children’s Hospital and their psychiatrists were able to get away with these types of dependency actions is because the public knows so little about the disease. It is hard to bring mitochondrial disease to public view; research dollars are scarce and the disease is relatively rare and misunderstood. Medical school education is essentially non-existent so few doctors recognize it.

Lou Pelletier broke the court’s gag order on the Glenn Beck show a year after Justina was taken. Although I’m not a fan of Glenn Beck, I applauded Mr. Pelletier’s courage and, at the time, was grateful for the attention being paid to the cause. Within a matter of hours, Fox News picked up the story, as did ABC. Wire services were alerted and it became international news in mainstream media outlets.

The protest quickly moved away from the core issues and became a marketed referendum on religious freedom, right to life, parental rights and an fevered attack on the entire child services system. A vigorous protest has been mounted in a relatively short time but it has not hastened the progress of the dependency action.

Other people jumped into the mix within days. Reverend Patrick Mahoney, of the Christian Defense Coalition, bought a one-way ticket to Boston and immediately stepped forward as the Pelletier family spokesman. Rev. Mahoney has enlisted the aid of his followers to organize prayer vigils and protests. He is called upon for frequent updates and his opinions are shared widely on social media.

Not all of the Reverend’s activities have been helpful to the cause. For example, he accompanied the Pelletiers on their once weekly visit to see Justina, seeking entry as her spiritual advisor. Rev. Mahoney had to have known the facility is bound by a court order to limit visitors to immediate family only. The family-only visitation rules have been a point of contention for months and have been publicly debated. Instead, he went to the facility, was denied access to Justina, and broadcast that fact as an injured party. Weeks later, this incident involving the Reverend is still being continually portrayed as a violation of Justina’s constitutional rights regarding religious freedom. Facility staff were classified as enemies on social media. Telephone campaigns were launched, encouraging people to register their objection and demand Justina have access to a spiritual advisor of her own choosing. When it was brought to Rev. Mahoney’s attention that tying up facility staff with telephone calls could result in poor care for Justina, protesters were asked to flood DCF phone lines instead. Apparently, no one considered that the stunt likely caused Justina more stress at the time because her parents entered the visit fresh from confrontation. Did any part of that incident help Justina? No, but it did give the Reverend a desired talking point.

Mat Staver, founder and chairman of Liberty Counsel, joined in the fight. He made a motion to the court to be allowed to represent the family but Judge Johnston has not yet ruled on his motion. Despite his not being recognized as counsel for the Pelletiers, today Mr. Staver filed a motion for contempt against the DCF for failure to allow Justina to be seen by the doctors from Tufts. DCF has publicly stated they are holding off making medical appointments at Tufts pending the court’s decision. Judge Johnston has publically stated his intent to render that decision by close of business Tuesday. Filing a motion for contempt one day prior to the decision, which will likely make the issue moot, accomplishes nothing except draw publicity to Mat Staver.

Dr. Phil taped a show with members of the Pelletier family and Rev. Mahoney. Coincidentally, the show aired the same day as the latest court hearing, which many felt would be the day Justina would be given her freedom. To his credit, Dr. Phil presented a balanced show and discussed the core issues. There was a lot of interest generated online prior to the show and he likely enjoyed good ratings that day. I imagine a follow-up show, taped after Justina is returned home, is in the works and it can expect good ratings as well.

A handful of lawmakers in Connecticut and Massachusetts, acquiescing to demands of constituents, gave interviews promising to attempt legislative action to free Justina, while knowing, but not saying, they lack the jurisdiction to override the dependency court’s order. Lawmakers are promising parental rights legislation, as well as an overhaul of children’s services, but are forgetting they make these same promises every election year. They can’t help Justina but have instilled good feelings in their voters, so it is a win for them.

Following the lead of Glenn Beck, Rev. Mahoney and Mat Staver, Christian conservatives have vigorously embraced the Pelletiers and their cause. Facebook groups supporting Justice for Justina have ballooned in size. Twitter campaigns are ongoing, as are telephone campaigns. Instructions have been given on how to file formal complaints against the hospital, the doctors, the DCF staff and Judge Johnston. There is an all out social media blitz to make life difficult for anyone who has had a hand in Justina’s ordeal. Today, in anticipation of Tuesday’s court ruling, specific instructions were given to Justina’s supporters to telephone the judicial offices to make clear “the whole world is watching.”

The amount of vitriol in the Facebook groups dedicated to Justina’s case is overwhelming. Everyone from Judge Johnston to DCF to the people caring for Justina are being vilified. Anyone who disagrees with the new hardline conservative stance is pounced on and chewed up on social media. Advocates, sick themselves, who have worked tirelessly on Justina’s behalf have grown weary of having to defend themselves and have slipped into the shadows. This kind of activity does nothing to get Justina home and I hope she never reads the comments on the pages dedicated to justice for her.

In summary, how successful is this new form of protest? Has all the new activity from the Pelletiers’ legal team helped move the dependency along? Not at all. Plans to transfer Justina’s case to Connecticut DCF jurisdiction were well underway before Lou Pelletier broke the gag order. It is entirely possible Judge Johnston would have signed the order transferring the case to Connecticut on March 19th had he not been inundated with new motions.

Justina was transferred from BCH to a temporary juvenile housing facility about six weeks ago because she proved to be a poor study subject, NOT because of public pressure. She was not showing improvement after a year under the BCH treatment plan and the psychiatrists could no longer justify her confinement. Her doctors recommended a transfer back to Tufts for further treatment and DCF and Judge Johnston set the transfer process in motion.

Are banging the drums of religious freedom, right to life and parental rights helping Justina come home? No, but it is garnering publicity for some, paving the way for lucrative civil lawsuit contingency fee retainers for others and guaranteeing press and TV show ratings. Will there be a book? A TV-movie? A spread in magazine? Does she need an agent? How soon before Jessica is asked to go before the television cameras and talk about her captivity? Has anyone asked Justina how she feels about all of this?

The pieces are in place for Justina to leave Massachusetts and such an order could be signed tomorrow. She has a long road ahead but will soon be recovering in the arms of her family. The circus will quickly move on to the next photo op and vows to change the system will be forgotten. For Justina, I wish her a steady physical and mental recovery. Mostly, I hope the world will allow her to quickly achieve closure so she can resume normal life, out of the public eye and away from the storm.

Meanwhile, M.E. and other invisible illness advocates will continue to work hard to make sure another patient is not kidnapped in the name of medicine. Karina Hansen in Denmark still needs to come home.