I felt overcome by emotions as I watched my step-son perform in his sixth grade concert recently. I watched him lip-synching most of the songs and, frankly, not in accord with the music. I watched him steal a few looks at the girl he likes. He looked out at my wife and started smiling. He would shake his head when he saw her look at the girl he has a crush on. We knew he was not really paying attention and the teacher knew the same. An awful thought crept into my head – what if his distraction led to a visit with a psychiatrist. Would we be told that his inability to focus was a sign of a brain disease? Would we be told he is among the six million kids that “have” ADHD? Would we be told he needs medication? Would his inattention be pathologized?
Does our culture allow for further exploration that reveals who these six million kids really are? This exploration into my step-son would show a truly wonderful kid that could not possibly be more focused on the weekends when he dominates his soccer matches or when he takes scraps from our garage and turns them into works of art.
As I sat there I thought just how much people love their kids. This may seem like a strange revelation at 41 years of age, but life has been anything but typical for me. I watched parents move around with their video cameras. I took part in standing ovations for music that reminded me a lot of the noise my cat makes when I am late feeding her. Thanks to my wonderful step-children, I now have an understanding of parental love. If someone were to ask me what I would do to help my kids have a happy life my answer would be – the same as the other parents in that room last night – anything.
This realization made me feel guilt about some strong feelings I have been having. A few months ago Connecticut’s General Assembly had a hearing on mental health in response to the Sandy Hook tragedy. The team at Advocacy Unlimited and many other activists and advocates spent roughly 13 hours at the hearing. We testified and watched many others do the same in front of politicians and every major CT media outlet. I watched so many family members testify about how their loved ones were suffering and needed increased access to services – including forced treatment. They came from every walk of life to demand more services in the public and private mental health system.
I sat filled with anger for hours, listening to testimony that damaged our position. The family members’ eyes filled with tears as they detailed the perceived troubles of their loved ones. I realized last night that my anger was misplaced. It should not have been directed at the parents. The parents believed what they were told and what society believes – that certain emotional experiences can be signs of disease that needs to be treated like other medical illnesses. The reality is that those parents I watched testify want exactly what I want – for our children to be happy.
I think there is little doubt that family members testifying and advocating for forced treatment and increased access to services has been effective (Intensive Outpatient Commitment – IOC – exists in 44 states and counting). I now believe that in order to truly influence policy and spur significant change in the mental health system it is important that family members see that the problem is the services not access to them. It was not long ago that I said in a meeting that I do not care what family members want. I said that I advocate for changes in a system that “treats” adults. Paul Acker, a fellow CT advocate, said to me that he disagreed with me and said the family members need to hear our voice. He was right about hearing our voice and beyond that I forgot on a personal level how influential our families can be. It was, after all, my mother that basically broke me out of a psychiatric hospital and got me in a place that saved my life. It was my wife, at a time when all looked hopeless, that would not let me quit. I was naïve to ignore the power of loved ones. We can never accept the adoption of the “parental perspective” as the authority on our experiences. That said, it behooves us to influence this voice that is so often powerful and sought out.
I think the way to shift the focus of loved ones is to show methods, outside of the medical model, that lead people from suffering towards a meaningful life of their choice. I have made a conscious decision to always talk about techniques I believe work and not just criticize status quo “treatment methods.” I got my first forum to test my new strategy when I was asked to speak in front of the Sandy Hook Commission last month. I wanted to detail what it took for me to be able to reshape my life in hopes that they would recommend that services be improved and not just expanded. I talked about my experience in a psychiatric hospital and years of just psych drugs and identifying as my diagnosis. I told them that during my hospitalization I did nothing all day. I was not talked to or given any ways to deal with my experience. I presume that the days of nothingness were designed to allow time for drugs to “kick in.” Once a day we lined up chairs to wait to see a psychiatrist. In my first five minute meeting with the doctor, I was told I had a lot wrong with me and would need a drug cocktail for the rest of my life.
I told the Commission about the life disparity and the evils of the medical model in general. But then, unlike previous speeches, I talked about what worked for me. After my awful stay in the psych hospital I ended up in a rehab facility run by people who self-identify as “in recovery.” I told the Commission that I was taught to be accountable for my actions and to take ownership of my life. The counselors in the rehab told me that I was not broken and I could shape much of my time in this world. For the first time in my life – I listened. I listened because the people talking to me were living proof that a meaningful life beyond my current experience was possible. In the years since rehab, I have listened to many people that have gone through experiences comparable to mine. I have learned the impact nutrition has on my emotional wellbeing. I have learned the value of being present; yoga and meditation have become staples in my life. I have learned the value of facing my fears. I also learned to sit with discomfort – as my friend Greg Benson has articulated on this site, I changed my relationship with suffering. I have structured my life around deliberately incorporating these values and principles into my daily routine.
In the weeks since that testimony, I have been asked to speak in many venues. People on the Commission asked to meet with me privately. Opening up about what works for me has resulted in my being asked to speak in new circles. I have been approached by many family members in these forums. Some of them have said to me that what works for me would not work for their loved ones. They say I was not “sick” like them.
I share with them the struggles I have had throughout my life, beginning in early childhood, with emotional distress. I have been given three diagnoses and have been on countless psych drugs. In my thirties, I became completely addicted to things that allowed me to escape myself. I hurt people and publicly embarrassed my loved ones. I suffered two strokes and have had open heart surgery. I know suffering on so many levels. At times in my life, suicidal thoughts were the only thing that gave me peace. I speak honestly about my experiences with the hope that the family members I meet won’t so quickly distinguish my past experience as fundamentally different from their loved one’s current situation.
I will point out flaws in the system. I will become emotional when I see the medical model rearing its ugly head. I will also speak out on the mechanisms that humans have used to deal with troubling experiences for hundreds of years; things like yoga, meditation, community, spirituality and nutrition. I was happy to see the blogs about nutrition. I think it is really important to talk about how we can deal with distress in healthy and impactful ways. I hope that in time the outspoken family members in Connecticut and beyond will see the value of holistic approaches and demand better from the system – not more of the same.
We can better encourage parents who are currently screaming for more access to the status quo – to be angry that the status quo is not good enough and needs to do better than just prescribing drugs. We also owe it to our communities to channel the voices of parents who have minor children dealing with emotional distress, who feel that all the system offers children is diagnoses and drugs.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Mad in America has made some changes to the commenting process. You no longer need to login or create an account on our site to comment. The only information needed is your name, email and comment text. Comments made with an account prior to this change will remain visible on the site.
You write: We can better encourage parents who are currently screaming for more access to the status quo – to be angry that the status quo is not good enough and needs to do better than just prescribing drugs.
I totally agree, but there are two kinds of parents in this world, and unfortunately, the ones who want to wallow in grief seemed to have gained the attention of the legislators. If they stopped grief mongering and feeling sorry for themselves (as if this is all about them), they might even begin to enjoy their relatives and feel enriched by the experience.
Thanks for your well thought out article. It was good to see that listening does happen and can affect a person’s attitude. Some parents were able to listen to you and to you them. This is what we as a movement so badly need. And it is so very hard to do. To be able to disengage emotionally and listen to someone who holds diametrically opposing beliefs. This holds true with all the groups involved in Mental Health and other disability movements and organization.
One of the problems in our country is that at state and local levels the Developmentally Disabled and Mental Health care centers were seen as two separate entities. There were reasons but it has ended up with bad things happening to the Mental Health sector. It was almost a divide and conquer strategy. The parents of the DD folks didn’t want their children labeled the “r” word and the parents with children with Mental Health Issues didn’t want their children label with the “c” word. Back then we were unable to have an umbrella of social action and justice cover all disabilities. It would be nice to find an umbrella now and use it for everyone.
mcoma, can you please explain what the DD, r, and c words stand for?
DD = Developmentally Disabled
r = retarded
c = crazy
Rossa, I believe “DD” stands for Developmentally Disabled, “r” for retarded, and “c” for consumer.
BTW, thank you for your comment to Deron above. I meet these parents all the time. No matter what I suggest as a possibly viable alternative to having their children hospitalized, labelled and drugged up to the eyeballs, it’s never good enough. It may have worked for me, it may work for some, but in the particular case of their child it certainly won’t. Their child is just too sick. And no matter how many details of my own experience I provide, I clearly was misdiagnosed and never really sick at all, or I’m one of the lucky ones whose disease went into remission… Never mind the reaction when I suggest a completely different, much more hopeful view of the crisis the offspring in question is experiencing than the medical one. That’s when I’m in for getting hung, drawn and quartered.
“I have learned the value of facing my fears”, Deron writes. Earlier today I witnessed a mother of a labelled person on the internet attack somebody with lived experience for suggesting a more hopeful approach. It was like watching a young kid throwing a temper tantrum because somebody stole his candy. If you’re too afraid to face your own fears, your own inner demons, you will inevitably project them onto others. Thus, whenever your child mirrors your own fears, you will inevitably blame the child. S/he is “mentally ill”, brain diseased. Fear is not what creates love, parental or other. “Fear is the path to the dark side”, as Yoda says in Star Wars, it leads to anger, hate and suffering, for everybody involved.
mcoma, “an umbrella of social action and justice cover all disabilities”. I’ve received a couple of psych labels, and I’m a voice hearer. That doesn’t make for a disability in my world. The first in my world is an attempt at discriminating against me, the latter I regard a gift.
Ronald, you probably got it more right than me: “c” for crazy, yup.
Thanks, Marian. I read these things in a rush and don’t have a lot of time to decipher abbreviations or else I miss the obvious (DD).
I hope you are managing to contain yourself (LOL) when up against parents who are determined to keep their “loved ones” labelled. Fear is what it’s all, and that can’t be love. I see this with other mommy bloggers (not all of them, but some of them) who just don’t trust their relative to not screw up again, and again, and again. Some strike me as authoritarians who don’t like being questioned, others worship the god of science and haven’t a clue about human relationships.
Expanding on my message below, on reflection, at the beginning of the crisis, most parents have been scared silly by the medical profession, and are too inexperienced in these matters that they tend to take what the doctor says at face value. Eventually, some may embrace a more empathetic understanding once they realize that most doctors haven’t a clue about how to treat psychosis.
Sorry this is late R
c for crazy
dd for developmentally disabled the current proper word.
There have been several very strong campaigns against the use or description of the word or negative image of the DD folks.
In California there was a campaign for the ADA which worked well and involved the whole disabled communality. I think this the way to gol
There is a “stop the r word”
social media campaign and others.
What I have observed is those with DD children say well at least that are not mentally ill and the folks with children who are mentally ill say my child is very intelligent. It is divisive in areas where the County Boards on Mental Health and the DD Board are separated. Funding goes to the DD folks more than the Mentally Ill folks who have less stigma.In our state they were together for awhile but the Mental Health parents pulled out. Now it is really hard for those with DD and a Mental Health concern to get adequete services
“Some of them have said to me that what works for me would not work for their loved ones. They say I was not “sick” like them.”
This is what makes me wonder who the sick person really is. Why would a parent want to insist that their child is mentally ill?
“Why would a parent want to insist that their child is mentally ill?”
Your question has haunted me for some time. The most insightful answer to this question I’ve seen to date was Marian’s Goldstein’s explanation about the narcissistic parent. The topic deserves a blog of its own. It’s a huge problem.
A couple of years after my son Jake’s death, I joined a “support” group at my church called Loveing Someone With Mental Illness. I was sure the group members would be so happy and encouraged to hear all I’d learned in the previous year about the myths of mental illness promoted by the APA and the pharmaceutical powers. I couldn’t wait to encourage them with the hopeful truths about Loren Mosher’s work, the success of Open Dialogue, and all I’d learned from my psychiatric survivor friends. Boy, was I wrong. The leaders were hell bent on teaching NAMI’s Family to Family curriculum about chemical imbalance and chronic “illness.”
As an example of their mindset, regarding the success of the Soteria model, Karen, a group leader scoffed, “Well if THAT was true, our government would have established Soterias in every state by now.” The group leaders told members they should go ahead and mourn the loss of their “loved ones.” When I objected – encouraging members never to give up hope and that I know dozens of people who had been able to outgrow their diagnoses of mental “illness” and have full, meaningful lives – I was kicked out of the group. I tried to appeal to the pastors, but I was told “this course has been approved by church leadership.“ And I was told not to return to the group.
It’s noteworthy to mention that Karen also enjoyed blaming her children’s mental “illness” on her ex-husband’s mental illness genes. She sneeringly stated that their genetic inheritance from him was “the gift that keeps on giving.” The other group leader, Jane, had told me two years before about her son’s suicide, “I was finally able to find peace by just accepting that my son had a sad life due to his chemical imbalance.”
So there’s part of the why. There’s something very comforting (for some people) about a simplistic explanation for a complex “problem.”
Families can be both. A loving, caring family can be a blessing but a family like mine, which was caring in all things material (education, etc) but uncaring with everything else, is a curse. I would not have been abused by psychiatry had it not been by the intervention of my parents. I would be probably equally divorced, but I would not have to deal with being a “psychiatric survivor” if my parents had minded their own business instead of meddling with mine.
So, I stand by General Patton’s quote: “God deliver, us from our friends, we can handle the enemy”.
a lot of families like the drugs, the alternative would be to look at themselves and that is too hard.
On the other hand I sometimes go to conferneces for carers and say things like the best way I can help my friends who have diagnosis is to keep them away from services because they are so often harmful. Or I say can a service be developed whereby healing conversations between family members and people in distress are facilitated in times of conflict and crisis? while not explicitly going for the full on Open Dialogue, family therpay thing it is a move towards more psycho-social interventions and I do think it is important to keep chipping away at these things.
So more power to your elbow Deron
My heart aches and swells as I read your words. They ring so true for me – as a parent, as a person who has suffered in the prison of psychiatric treatment, and as a being who cares far more about the quality of mental health care that our children (and other people) receive in this country than the quantity of it. I, too, am grateful for those who have inspired me by connecting with me instead of trying to constrain me in my emotional and mental distress. In my family, it is only one of my sisters (who experienced some brief psychotic episodes in recent years) who has real understanding of what it is like to be feared, rejected, and torn apart by bouts of madness.
Thank you for the work you are doing. I hope to continue to be involved in more integrative ways. I’m working towards that one step at at time . . .
Thank you so much for articulating this with such straight-forward grace and honesty. Yes, most parents would do anything to support their kids in having a happy life.
What a “happy life” entails, however, can vary wildly.
Often, many parents who “love their kids” are not necessarily willing to accept or accomodate various lifestyle choices or personality tendencies that do not conform to their (the parents) version of what “a happy life” looks like.
Let’s face facts, the culture of parenting in the Western world is not exactly rooted in nurturing happy self-directed lives. For a fairly large portion of modern history, children were a resource or a requisite, labor or status.
Not all parents want their kids to have happy lives. Some parents just want their kids to…what?
Be like them? Happy or not?
How many kids have been tossed into the psych system because they were simply “different”?
It’s as if the parents are so ashamed of their punk kid, their queer kid, their art kid, their shy kid, their day-dreaming and defiant kid…that they welcome a diagnosis to blame, pitying themselves form of hushed tones and in the slow shaking of their head, mourning the child that will never be…the child that “changed”…saying things like, “I love you, but I hate your illness.”
They never talk about trauma, never talk about what happened and happens within the family.
While in the meantime, bright and brilliant sensitive kids are getting absolutely wrecked by psychiatric, emotional, and existential trauma.
It’s really outrageous.
What about the parents who trot their cranky toddler around to every pediatric specialist in town for a not-otherwise-specified dx and prescriptions for ritalin and risperidone? They have such long, long conversations in the school parking lots about how hard it is, how very very hard it is.
People tell them that they are incredibly strong.
Munchausen Syndrome By Proxy?
Oh, and the families who have no choice but to pay the rent with their kids’ disability check? What about them?
I’d say that parents could potentially be an allies or adversaries, in regard to both the movement for human rights in mental health and to their children.
Thank you for a beautiful and inspiring essay. Keep educating with compassion.
You’ve stated this so well. I work in the Admissions Dept. of a state hospital. In my state you can be brought to court for evaluation for necessary mental health treatment as long as two people go down to the sherrif’s department and swear out a petition stating that you “need help.” You should see some of the reasons that parents and family members want their family member to be “treated” for. We receive a copy of the petitions so we know why the person is sent to us. And the sad thing is that, depending on the prejudices and assumptions of the judge ruling on that day, most people get sent to our hospital for at least a seven day eval. And once you get here guess what? It’s damned difficult to get loose once the psychiatrists get their hands on you. One young person who was sent for evaluation by the judge is transgender and is going from being a man to becoming a woman. Well, that person’s father is furious and she got sent to the hospital by the judge. That person didn’t need to be in the hospital. I see this all the time twice a week every week with the exception of Christmas week! One young man gave his money away to others who were in need. Guess what? He was dragged to court by petition of his mother and the judge, upon the advice of a psychiatrist present, sent the young man to us for an eval. It makes me furious!
Thanks for this post Derron. I’m glad you mentioned the importance of good nutrition. This is especially important where children are concerned.
I believe that most parents do want to be good parents and want to have happy, healthy children. But many do not know how to feed their children and unfortunately many doctors don’t either. Many people believe that processed bread and cereals, granola bars and fruit juice are healthy food choices. Then they add soda, candy, cookies and cake because everyone needs a treat some time. They rarely eat whole fruits and vegetables. Then they wonder why their children are sick, anxious and depressed.
It could be interesting to look at why so many parents seem to think that they’re inadequate as parents, leaving where unconditional love should have been a vacuum in their children that they then, loaded down with feelings of guilt, try to fill with treats of all kinds. A parent who is capable of really seeing their child, instead of seeing an object to fulfill their own unmet needs with, doesn’t need to buy his child’s “love” (if it’s bought, it ain’t real love) through treats.
I understand how it can be extremely tempting to look for the cause of “mental illness”, and all other kinds of problems that manifest discontent in the absence of love, everywhere else but inside ourselves. But if a change of diet for instance was all it took to prevent or cure “mental illness”, then how come we don’t see it actually work for more people?
Deron, Thank you for a wonderful article! I truly believe in whatever works and I think that working collaboratively, especially with people with an opposing view is so important. Maybe minds will be changed, maybe not, but I think most people in this fight have good intentions and love. For me what has worked is a combination of having a great therapist who focuses on problems in living, how things get in the way, and not really on the diagnosis. I do feel that medications help me, and that is for ME and not the world. I’m a firm believer in doing what works. Thanks for making me think and for sharing your love for your stepchildren.