Tuesday, February 22, 2011

What holds us back?

I've been planning to write this blog for several weeks.  The theme I've been musing over is "the challenges of organizing" on behalf of both parents with psychiatric experiences and their daughters and sons.

The challenges are many.  Shall I start with the interpersonal or the systemic? 

Systemic issues are important, so I will start there.   What I share here is within a U.S. context, although some of these issues may be overlapping with other countries.  


Many of my friends who have no experience with mental health systems, who have not experienced having a parent or family member with serious mental illness, assume that resources exist to facilitate conversation and support children who have a parent (or family member) with a mental illness.  They are surprised when I explain the lack of resources in the United States.

And then there is the reverse.  People who are trained as mental health services providers or who are involved in larger mental health advocacy efforts are quite convinced that most people in mental health systems (people with what is commonly called "serious and persistent" mental illness) are not parents.  Yet, the opposite is true.  In fact, a majority of people with "serious and persistent mental illness" are parents.  In this case, the people who should be most aware are the least aware.

Why is this?

Over the past nine years of organizing I have been on a journey to understand barriers that have held mental health systems back from recognizing and supporting people using services so they may succeed in their parenting roles.    The complete absence of recognition that children come to visit their parents in mental hospitals, and need special supports in those environments, has been part of my personal passion for this advocacy effort.

Here are some of the issues I have discovered on my journey thus far:

  • Historical prejudice against parents.  
Until recent decades (and still in secret corners of some mental health professional conversations) parents of people who have a mental illness - such as schizophrenia - were blamed for their children's illness.    This was especially true for mothers.  The National Alliance on Mental Illness (NAMI) was born in the late 1970s to respond to and fight this prejudice against parents who have a child with a mental illness. Eventually, mental health professionals have recognized that blaming parents for their children's illness was a mistake.  However...

There remains a stigma when the words "parent" and "mental illness" are put together in the same sentence.  People in mental health advocacy movements, such as NAMI, are largely parents advocating for their children who have a mental illness.  They assume that when a person, such as myself, talks about having a parent with a mental illness we will be a) complaining;  b) blaming our parents for any problems we might have; c) speaking about abuse; d) not actively working in a caretaking role.  

On a few occasions I have actually met parents who have a child with a mental illness (young adult child) who believe their child cannot and should not be a parent.  I have heard these specific parents tell me that they have encouraged their children to have abortions.  Some conversations have tipped into areas of thought that would encourage sterilization of people with "serious and persistent" mental illness.  In these somewhat rare, but occasional conversations, the people I am talking with fail to recognize that such acts would mean that people like me are not born.    (And people like Marilyn Monroe, Carrie Fisher, Gloria Steinem and millions of others would not be born either.  Millions of people have a parent who has struggled with psychiatric problems.)

This is a serious topic that touches on layers of negative assumptions which are deeply imbedded in our society. It deserves a lengthier discussion that I will go into now.  Simply put, prejudice against people with mental illness as parents is so deeply imbedded that it permeates even our largest mental health advocacy movements.  

  • Emphasis on individual vs. family (especially for billing)
Part of what holds mental health and child welfare systems back from addressing the needs of BOTH parents with mental illness and their children is our system for health care, which focuses on one individual as the primary person receiving services.  Adult mental health providers actually believe they cannot work with the children of an adult who is their client.  Child welfare system workers do not know how to partner with adult mental health systems for the benefit of the children in their care.  And children's mental health systems, by and large, do not provide mental health support to children unless they have an identified mental health diagnosis.  But this is changing with increased understanding of children's development.  

  • Misunderstanding of child development
For decades, and historically, children were to "be seen and not heard."  There was widespread belief that children were not deeply impacted by their early childhood experiences - they just adapt and move on.  In fact, all evidence now tells us that the opposite is true.  85% of children's brains are formed between ages 0-3.  In general, children are deeply effected by their experiences, especially traumatic loss, bereavement and sudden separation from a central caregiver.  These experience can have life-long consequences.  

Little by little there are shifts that fill obvious holes in our mental health systems.  In the past two years research into the effect of maternal depression on infants has led to policy shifts that extend funding for services to both mothers with postpartum depression and their infants, even if the infants are not presenting symptoms.  Yet, there have been few other shifts to support children who have a parent with a mental illness.  

My personal dream is that someday it will be standard practice in hospital emergency rooms to ask (when a person is being admitted for psychiatric care) "does he/she have children?"  If the answer is yes, a further inquiry would be made regarding "where are the children?"  And then, depending on who is caretaking for them - grandparents, other parent/spouse, foster care, extended family - a brochure will be provided titled "How to talk to a child about their parent's mental illness."  

This is not rocket science.  In fact, materials such as these exist in Australia and the UK.  Yet, currently in the United States, advocacy efforts must be focused on convincing mental health professionals that people who have mental illnesses often have a huge societal role as parents.  

There is still wide spread disbelief among mental health professionals that their clients are parents.  So, what is that about?

  • Disbelief in the potential of people with psychiatric experiences.

Until recently, mental heath systems were structured around belief that people with mental illness could not, and should not, work or do other types of jobs in society.  They were considered permanently disabled and were often told to give up on their life dreams as part of their treatment within mental health systems.  Recovery was not considered possible.  While mental health systems are now actively combatting this negative history with large scale efforts to incorporate concepts and goals of mental health recovery, there remains a great deal of negative beliefs within professionally trained mental health service providers.  I have wondered over recent years, "How can I help mental health professionals see the people they are working with as parents IF they don't see them as people first?"

Hopefully, as the importance of parenting increases in our society, the importance of parenting to people with psychiatric experiences will be given greater attention within adult mental health systems.  I think mental health service providers are missing enormous motivation for wellness among their clients when they fail to see the importance of their client's parenting role, to them and to society as a whole.


Among the symptoms of the systemic false beliefs I have listed above, I am regularly asked by psychiatric professionals with decades of experience whether I think this is a "new phenomenon."  By that they mean, do I think "that people with mental illness are parents because of deinstitutionalization in the 1970s?"  Its funny, actually, absurd to me that this question is asked... but I hear it regularly.  I remind these physicians (most often this question is posed by psychiatrists) that among women, many experience mental health problems after giving birth.  I also share that I have met many people, usually decades older than myself, who have had parents that disappeared into state mental hospitals and eventually died there.  In other words, people with mental health experiences have been parents as long as the history of mental health.

Has deinstitutionalization influenced this at all?   Well, perhaps.  Perhaps now a generation of people, like myself, grew up with our parents rather than having them taken away permanently to hospitals.  In my case, I am part of the generation of children who had a parent with psychiatric illness when deinstitutionalization was first happening (in the late 1970s).  This may have influenced my generation and we are now gaining our voice within larger mental health advocacy movements.  

And this causes me to wonder:

Is the phrase “nothing about us, without us” relevant to daughters and sons who have a parent with mental illness, as it is to our parents in mental health consumer rights movements?  Perhaps I will write about that in another blog....