On October 6, 2009, the popular television show Oprah aired a program about a 7 year old girl, Jani, who has “schizophrenia.” Schizophrenia is fairly rare within the population to begin with; it’s nearly unheard of in children as young as 7. That’s what made this an interesting and engaging program. The disorder apparently started at 2, with imaginary friends who started showing up in Jani’s life.
I can’t speak to Jani’s specific case, since I’ve never met the child, but I will say that labeling a child at this young an age with such a serious mental disorder (she was first diagnosed at age 5) is extraordinary. And of course it is easy to second-guess Jani’s experience and that of her parents from afar.
Her psychiatrist, Dr. Mark DeAntonio [from the UCLA Medical Center], says it’s very unusual for a child Jani’s age to have this kind of mental illness. “I’ve seen only really a handful of children in my 20 years that fit this kind of diagnosis,” he says. “This kind of alternate reality that she lives in—that’s very scary. That’s very disturbing.”
Disturbing indeed. Even more disturbing that Oprah would choose to highlight this kind of case with an entire show devoted to it — kind of smells opportunistic. But it wouldn’t be the first time Oprah took the sensationalistic route in portraying a mental disorder for ratings, rather than helping people truly understand people’s living with them.
I wouldn’t have written about it except that a few days ago an organization called Intervoice sent me a news release that contained an “open letter to Oprah Winfrey” regarding the episode and Jani. It’s hard for me to describe what Intervoice is, so I’ll just quote them instead:
However, there are also significant numbers of voice hearers who are overwhelmed by the negative and disempowering aspects of the experience. Many are diagnosed as having a serious mental health problem such as schizophrenia – a harmful and stigmatizing concept, in our eyes.
The experience of hearing voices prevents some people from living a fulfilled life in society (especially those in psychiatric and social care) and can lead to having a very poor quality of life. We seek to enable voice hearers troubled by their experience to change their relationship and attitude to their voices and to take up their lives again. We also want to ensure that our innovatory approach is better known by professionals, family members and friends.
We have spent the last 20 years trying to better understand why some people can cope with the experience and others can’t. We have discovered that those people who are not able to cope with their voices, on the whole have not been able to cope with the traumatic events that lay at the roots of their voice hearing experience.
I like their message — one of hope and empowerment. That hearing voices doesn’t have to be thought of as simple a “disorder” or problem that needs a fix (although many people may prefer to have the voices go away, if that’s their choice).
The organization included a long, 2,372 word letter to Oprah (sans bibliography) that emphasized these points. You can check out the entire content of the letter on their website (linked to below). But I thought this part of the letter was most interesting.
If Your Child Hears Voices…
The letter, which had 95 signatories including a fair share of PhDs, MDs, and other professionals from the international community, included 10 tips for what a parent might do if they find their child is hearing voices.
In our experience, what helps children the most is a systematic approach to understanding the voices. So, in order to help we have developed an interview to help map the experience. This can be used as a way to understand the stress the child is under, and then to work together to find solutions for the problems raised by the experience of hearing voices.
We would like to offer this 10-point guide for parents, indicating what they can do if their child tells them that he or she hears voices:
- Try not to over react. Although it is understandable that you will be worried, work hard not to communicate your anxiety to your child.
- Accept the reality of the voice experience for your child: ask about the voices, how long the child has been hearing them, who or what they are, do they have names, what they say, etc.
- Let your child know that lots of children hear voices and that usually they go away after a while.
- Even if the voices do not disappear your child might learn to live in harmony with his or her voices
- It is important to break down your child’s sense of isolation and difference from other children. Your child is special – unusual perhaps, but really not abnormal.
- Find out if your child has any difficulties or problems that he or she finds very hard to cope with, and work on trying to fix those problems. Think back to when the voices first started. When did the voices arise for the first time? What was happening to your child when the voices first appeared? Was there anything unusual or stressful that might have occurred?
- If you think you need outside help, find a therapist who is prepared to accept your child’s experience and work systematically with him or her to understand and cope better with the voices.
- Be ready to listen to your child if he or she wants to talk about the voices. Use drawing, painting, acting and other creative ways to help the child to describe what is happening in his or her life.
- Get on with your lives and try not to let the experience of hearing voices become the centre of your child’s life or your own.
- Most children who live well with their voices have supportive families around them who accept the experience as part of who their child is. You can do this too!
In conclusion we would like to stress that, in our view, labelling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalisation is unlikely to help resolve her problems with voices. Indeed, the opposite is most probable: Jani will simply become more powerless when it comes to finding ways to cope with her voices.
Because your well respected, award winning show reaches out to so many people, we are concerned that there will be many viewers who will be left with the impression that the kind of treatment Jani receives is the only one available. If this is the case then there will be children who will be subjected to an unnecessary lifetime in psychiatric care because their families believe there are no alternatives. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology – and – voice hearers who are patients can be helped to recover from their problems by being supported in developing their own ways of coping with their emotions.
We hope you will give consideration to the possibility of making a future programme showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a programme about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his voices and to discuss with the child, parents and therapists how this was achieved?
I’d have to agree by and large with their point, hence the reason you’re reading this entry today.
Just because something is unusual — such as hearing voices — doesn’t automatically make it a symptom of a more serious disorder. While it certainly can be (and in Jani’s case, only her doctors can make such a judgment), it may be something else instead.
We would love to see Oprah tackle mental health topics with an eye toward understanding they affect everyone, rich and poor, extraordinary and ordinary, young and old. And while it’s easy to always portray them in a negative light, how interesting would it be if someone talked more about some of the positives of having a different way of looking at the world. (Some people already do, most notably Tom Wootton in his books called The Depression Advantage and The Bipolar Advantage.)
Read the full letter here (PDF).
Read more about Jani here: The 7-Year-Old Schizophrenic