The Voice of Experience

A lot has happened in the past few days. This is not unusual. Things are always happening, expanding, contracting, unfolding and turning. Voices rise, mingle, disperse, people leaving home and returning.


As the few readers of this blog know, I have some significant concerns about the cultures and practices that define mental health in this modern world. You also know that I have my own history and that in many ways it has written my story, as our histories often do.

The other day, I came across an essay and it really struck a chord with me, several actually…dissonant and distorted, jangling and atonal…giving way to something that was near symphonic in my heart, which was the re-realization that we are all trying so hard, with the best of our hearts…and I am so thankful that people care enough to be scared, that they know what is at stake.

Here’s my response to I Am Adam Lanza’s Mother, which is posted as part of my new blogspace on Mad In America. I wish that every parent who is doing the rounds with their child’s mental health, which is every parent, could and would read the words written by people whose young lives were affected by coercive and inappropriate treatment:

Oh, wonderful, I can’t paste the link to link it. I apparently don’t even have the option to link in this post. The button is de-highlighted. Between this and the technological troubles that Mad In America has had, this piece of writing is having a hard time getting shared.

Which is unfortunate, because it is important, as are the comments made.


December 18, 2012

I woke up this morning and there it was again, I Am Adam Lanza’s Mother. This essay is all over the internet, written by a woman who is using her personal story about experiences with her “mentally ill” son, whom she is “terrified of,” to appeal for more dialogue on the issue of mental health. As I write this, her son’s picture has been viewed by over a million people. They have read her accounts of what may be some of these young man’s most painful childhood memories.

Fortunately, Michael’s mother updated her blog with this statement, responding to another blogger that voiced concerns about children’s privacy rights:

“We would like to release a public statement on the need for a respectful national conversation on mental health. Whatever our prior disagreements, we both believe that the stigma attached to mental illness needs to end. We need to provide affordable, quality mental health care for families. We need to provide support for families who have a relative who is struggling.

We both agree that privacy for family members, especially children, is important. Neither of us anticipated the viral response to our posts. We love our children and hope you will respect their privacy.

Our nation has suffered enough in the aftermath of Newtown. We are not interested in being part of a ‘mommy war’. We are interested in opening a serious conversation on what can be done for families in need. Let’s work together and make our country better.

“Thanks, all!”

Liza Long was successful in raising awareness and in creating dialogue. Her essay went viral with surprising aplomb. It was pulled from her small blog, republished on a regional academic website, and then picked up by both The Huffington Post and AlterNet. At last check, it had been shared almost 400,000 times.

On twitter and Facebook, people are exchanging links to articles and bits of personal stories, opinions about whether or not it is abusive to share your child’s story in such a way.  People are discussing the culture of violence and gun control, Asperger’s and medications.

People have not, unfortunately, been so quick to realize that forced treatment is itself violent. The posts acknowledging the role of psychiatric drugs, largely SSRIs and stimulants, in aberrant violence are woefully few and far between.

I think that young man, Michael, has every right to be angry and hurt and confused.

I don’t know when being angry and hurt and confused became a mental illness.

As an adult survivor of early psychiatric treatment, a recovery educator, and as a parent, I am deeply concerned that we live in a world that is so punishing of difference that parents are pressured to hurt their children, taught to view them through diminished perspectives and to hear their cries for help and efforts to voice distress as symptoms, manipulations, and fits.

It is concerning to me that the relationship between a mother and a child can be so damaged that the child is harmed by the mother and the mother is afraid of her child. I actually have a lot of respect for Liza Long, because she was honest about how she felt and about how she perceived her son’s behaviors and attitudes.

Fear, sadly, is one of the common effects of mental illness.

This term “mental illness” was introduced in the age-old tradition of establishing formal pathologies for things which fall outside of the statistical norm or which appear to function in a way that is deemed useless or undesirable. While the technologies of medical “study” and “intervention” may have become a bit more “sophisticated.” The basic premise is the same: individual human struggle is due to a flaw in the individual human structure.

At age 12, I sat in a room with my mother, in an office that I didn’t want to be in, and listened to her discuss with a doctor what might be “wrong” with me.  She was concerned and she had every right to be. In fact, she had a responsibility to be and, as a mother, she had an instinct to be. I was her child and I was struggling. I was angry, violent, suicidal, sullen, and rude.

Do you have any idea what a 12 year old girl’s fist can do to a door? Quite a bit of damage, as it turned out. There have been times that my mother was scared of me.

At that appointment, my mother found out that my IQ, like Liza Long’s son, was “off the charts.”  She listened to the numbers and she nodded, smiling at me. “Well, we’ve always known she was smart.” I don’t know if my parents told those first doctors about the speech classes the school sent me to when I was younger, about my social awkwardness, my sickness when it was time to leave the house in the morning, to ride into town, to go to school.

I don’t know if they told those doctors that I had just watched our family land be cleared and developed or that I was terrified of my math teacher or that, the year before, I had gone to Catholic school for a year, where an 8th grader had kissed me on the bus.

The next year, following a defiant underage late-night driving escapade in a slightly older girl’s mother’s car, I was sent to my first stay at a residential treatment facility.  It was there that I was first told that I had a “mental illness” and that there were pills that I would need to take every day, even after I was able to return home.

When I did return and I had to go back to school, everyone knew where I had been. I was, from then on, “a kid who had problems.”

I will never claim to be a person who didn’t actually have significant difficulty in my experience of living. I definitely struggled for many years. I have scars and records, memories sharp and foggy of things that, in retrospect, I am lucky to have survived. I did though, and I have recovered from my diagnosis of a severe and persistent mental illness. This does not mean that I have learned to “live with my illness” or to “manage it.”

This means I have recovered from the idea that the way I experience the world is an illness.

None of this is to say that people do not have difficult times. Some people experience the world in ways that can be very challenging and, at times, extreme for them. This is not to say, even, that some people’s brains don’t work differently than others. In fact, no two people experience the world in the same way.

However, the construct of “mental illness” tells us that some of these differences are more concerning than others. By and large, the dangers of mental illness are closely related to being treated as if one is mentally ill, from self-destroying social and emotional abuses, to the hopelessness of believing that one has an intrinsic flaw in one’s brain that will never allow them to stray too far from being sick and caught in struggle. Further, the “treatment” of “mental illness” itself is damaging, as evidenced by the many deaths and disabilities caused by forced and coercive interventions and chemical toxicity.

My family spent many thousands of dollars trying to help me and, as it turned out, the help hurt me more.  Further, the idea that I had something out-of-whack in my brain drove an invisible wedge between me and the rest of my family, who spoke in measured tones and who would glance at me furtively, wondering if I was about to explode.

The years I was on SSRI’s, drugs that are known to cause violent and extreme mood states, I was explosive. I slammed things. I screamed. I hit myself in the face and put my head into a wall so hard I saw stars. I did not want to do those things. I was as if a switch got flipped and all the feeling I had ever felt…all the rage and grief and fear…it all came out at once and I’d always end up crying, wanting to go home, even if I was home.

It wasn’t until 20 years later that I learned that the way I process information affects how I feel and that not everybody’s brain works like mine. Nobody’s brain works the same way.  Nobody feels the same way about things. We are all in our own little worlds, together alone.

For some, the world is a loud and clumsy place, full of laughter that isn’t understood and a deep observant sadness. For others, clothes hurt and school is a nightmare. The lights buzz. The cafeteria stinks. The kids are mean and the teachers are uninspiring. For some, it is all very confusing and hard to keep up with. The frustration alone brings tears and anger.

No parent wants to see their child struggle. I am the mother of children sometimes remind me a bit of myself as a kid, kids who are bright and sensitive, who feel things deeply and who sometimes aren’t easy to comfort when they have simply had enough. I understand how it feels to not know what to do, to see that your child is struggling and to find that efforts to “make it better” seem to cause more upset.

I have made appointments and I have filled out long questionnaires and have watched for signs of this and for signs of that. I have stuffed a crying child into the car seat and I have sat in the waiting room. I have tried to be the calm, perfect mother as I watched the blood be drawn, ruling out any and all diseases and syndromes for which there are actual tests. I have sat across the desk, like my own mother did, and listened to the doctor tell me all about a child who she had met approximately eight minutes prior.

It wasn’t radical holistic righteousness that turned our family sharply away from pediatric behavioral interventions, it was a quote, found in the book Not Even Wrong, by Paul Collins, in which he writes about his experience as the father of a child with autism. I was reading everything I could get my hands on and some of what I read was terrifying and some was hopeful. This helped the most:

“…the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.”

There aren’t easy answers. It is not as if the parents of neurodivergent kids can structure the perfect educational environment and can create safe social spaces that respect autonomy and diversity of communication, interests, and experience. Can they? In most cases, no. The demands of modern culture and economy depend on monolithic public schooling, often in environments that are assaulting to the senses and damaging to self-esteem.

Can families find skilled and conscientious supporters to help empower their children to be confident in the worth of their differences and to find self-determined ways to navigate challenges?

Can parents become, themselves, skilled and conscientious supporters of their children?

Can parents of a child who is struggling turn to anyone other than a mental health professional?

Yes. They can turn to their child and they can look at him or her and they can ask them, “What do you need?”

Often, children don’t know how to articulate what they need.  However, they will try to tell you. Sometimes, when children “act out,” they are trying to tell you.

It is safe to assume that all children need love, they need security.  They need trust, in both themselves and in their caregivers. As someone with lived experience in this area, it is very difficult to trust people who call the police to take you away because they don’t understand what is going on with you.

What does it feel like when the people you most need to believe in the strength of your future and the sincerity of your struggle sit down and inform you that there is something imbalanced in your brain and that it means you’ll probably always struggle and that it means, also, that people may be scared of you, because they don’t understand.

Do you understand?

The idea of mental illness creates and sustains stigma, by informing us that people who struggle with their humanity in ways outside of the acceptable range of normality are inherently flawed,

What are the costs and benefits of investing in a pathologized view of your child?

What are the other options?

We now know that even people who have been diagnosed with “severe, persistent mental illnesses” can and do recover. We know, also, that many people live in the world in ways that are outside the boundaries of normative function but which suit them just fine.

Why would we accept a prognosis for ourselves and for our children that is so hopeless and fraught with anticipated trouble?

There is more and more evidence that trauma and abuse contribute mightily to people’s experiences of distress. However, the use of the term “mental illness” informs us that human difficulty is due to a brain disease and that those who have brain diseases must have these diseases “treated,” even if that treatment must be forced and even if it seems to do more harm than good.

People are beginning to realize that the “progressive” nature of many mental illnesses, the tendency for people to get worse rather than better, is very likely due to the damage caused by pharmaceutical therapies and profound psychosocial abuses. The voices of the people harmed by medical model interventions are largely disregarded by the biopsychiatric industry, as are the voices of the people who’ve recovered from difficulties that they were once told they could not recover from, that the best they could hope for was to “stabilize” and to “manage.”

Parents can’t stand it when their children are unhappy. It hurts parents to see their child struggle. They want to make it better. They want it to stop.

Parents will do anything to try to help.  They will miss work, they will fill out forms. They will take out loans and they will even, if asked to, hold their own child down, believing that it is what must be done to help.

I don’t think parents realize the exchange they are making when they buy into ideas and treatment that, over time, have the potential to erode some very basic relational/trust bonds between child and caregiver.  When I was in the midst of recognizing what had gone wrong in my story, I angrily told my mother, “You believed the professionals over me! You even trusted the professionals over yourself…and they didn’t even know what they were talking about!”

When the professionals teach mothers to see their children as ill, both mother and child are harmed in that they lose something essential to the parent-child relationship, which is the ability to see their children clearly, with compassion, love and a commitment to their brightest possible futures.

In my home, we don’t use the term mental illness, other than to occasionally remark that it is a shame that some people choose to see the human condition, rare and wonderful in each of us, as something that is sick.  We don’t use diagnostic terminology. Our lives have been written in relation to the system driven constructs of mental health for too long.

Who is to say, at this point, that the peg doesn’t fit because it is square. It is entirely possible that the hole was cut the wrong shape.

I stand by my statement that Michael has every right to be hurt, angry, and confused. In fact, I think every child in forced treatment has a right to be hurt, angry, and confused. Chances are good that being hurt, angry, and confused are what got them put into treatment in the first place, because the world has grown too busy for the messiness of a child’s broken heart, too clean for the jagged edges of their deepest fears, too normal for the mismatched intensity behind their closed eyes.

At the end of the day, which began hours and hours ago, with coffee on the porch and a small sigh of dismay to see that Liza’s essay had gone even further, I am thankful that I had a chance to think about how her story is also my story, and how my story is also her son’s story.  I feel hopeful that with dialogue, the conversations we need to have can be had and that these small tragedies amidst the much larger tragedy of children lost and parents wounded will somehow help us to see that the problem in this country is not one of mental illness, but one of intolerance, false science and brutally irresponsible treatment, trauma and grief, bonds broken and dreams dashed.

I am deeply sorry that some children become so wounded that they really do become ill, sick in their souls, ravaged by pain and rage, their brains addled by anti-this and anti-that, left with no safe place in the world and no one they can trust to speak to.

We have a responsibility, all mothers and  fathers and also sisters and brothers, to protect one another from a fate so desolate and so damaging as that.



Is there really anything to say?

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s