Please note: Although this story is very personal to me, I am also using it as a way to introduce the Western Mass Recovery Learning Community to the readership of the Foundation for Excellence website, so please be sure to read to the end to learn more about our efforts and need for support!
I am someone who has been given at least six psychiatric diagnoses. (And, that’s just while I was still listening! Perhaps I’ve been given more in absentia, as seems prone to happen at times…) In the Western Mass Recovery Learning Community (RLC) – of which I have been a part since its conception in 2007 – sometimes that seems like an embarrassingly low number; Like I haven’t done quite enough to earn my ‘street cred.’ So many people have far more intense stories of human suffering, trauma and resultant psychiatric interventions than I. Alas, for better or worse, in the broader world, my six are certainly enough to qualify me as ‘other.’
Fortunately for my psyche, my spirit, my children and my community: Of the six, I claim none.
Instead, I identify as a woman of considerable strength who has made her way through a sometimes very traumatic and challenging world using great creativity and adaptive skills. (All be they sometimes ones – self-injury, for example – that appeared ‘unacceptable’ to those who did not understand.) My own life experience, coupled with my exposure to the life experience of so many wonderful people through the RLC, has helped me build incredible resilience and confidence in speaking up against the ‘status quo’ approach of labeling each other’s differences and distress (followed curiously by much scurrying around to ‘fight the stigma’ of the labels we ourselves have applied!).
This has prepared me, in some very important ways, to be the mother of my two perfectly wonderful children (a now 10-year-old son and 2-year-old daughter).
It has prepared me to be justifiably horrified when I noticed that my daughter already had a diagnosis on her medical chart: Chronic sleep disturbance. She was less than a year old and experiencing chronic ear infections when she got that one. Go figure.
It also prepared me to talk back and say no when I realized that one of the ‘routine’ pieces of paperwork my son’s pediatrician wanted me to fill out at his last annual physical was a mental health screen. It was at that visit that I also learned that doctors’ offices are being paid for every mental health screen that gets completed.
Most recently, it prepared me for this:
Yesterday evening, as my 10-year-old son and I were driving home from a ‘mother-and-son’ evening at the movies, he began sharing about his recent struggles at school. 5th grade has not been easy. Only a month and a half in, and he’s failing English. This is the first year he’s gotten ‘real’ grades, so it’s hard to make a direct comparison to those prior. However, I can say with some confidence that the sorts of issues popping up (not paying attention in class, failing to complete assignments, etc.) haven’t been quite so prominent since an experience with a truly terrible teacher in second grade.
My son and I have talked about whether the work is too hard or too boring. (He says it’s the latter.) We’ve talked about what he enjoys in school and what he thinks of his teachers. We’ve discussed why he doesn’t like to read, and what would help him be more excited about creative writing, given he’s generally a pretty creative kid in life. I’m not sure we’ve got it all figured out just yet. Actually, I’m pretty sure we don’t. There’s probably still a fair number of frustrating nights over incomplete assignments to come.
I wish I felt more optimistic, and that my son’s school years were going to be filled with achievements easily won. I wish I had a way to make it so. And yet, when my son further disclosed to me that the school guidance counselor had begun talking to him privately about taking ‘distraction’ meds, I was absolutely outraged.
This same guidance counselor had spoken with my husband by phone earlier in the week to express her concern as to how much my son seemed to be struggling to focus on his work. Her references to his “wanting to concentrate, but just not seeming able to,” were dripping with unspoken, “we think he’s ADD,” energy. Yet she never came out and said it. Never to the adult, that is. No, she waited until she had a vulnerable 10-year-old child before her. Then, apparently, she felt at ease offering visions of sugar plum pills to dance in his head.
What’s even more troubling is that this apparently young and naïve guidance counselor most certainly thinks she’s doing right. Why wouldn’t she? Surely, all her training and most of her colleagues would agree. She has inevitably fed these same lines to numerous other children in her relative few years in her role. Perhaps she’s been the first to plant the seed, or the final “straw that broke the camel’s back,” along the path to some child’s medicated new beginnings. She probably has no idea how much harm she has done in her own plight to make a difference.
To up the ante of disturbing even further, after my son had retired to his video games (yes, I realize that they may be a part of the problem) and I to my computer, I posted my frustrations to my Facebook page. I expected the shared outrage and supportive comments that I did in fact receive, but hadn’t anticipated that one fellow mother would be so very insistent that I better not argue with these school officials. While she wasn’t suggesting I medicate my son, she was suggesting that I do whatever I need to do on the side to work with my son and just smile and nod at this guidance counselor whose actions seemed so far out of line to me. She pointed out that the school had the power to accuse me of being a bad mother for not following medical advice, to drag me to court or involve the Department of Child and Family Services. They could threaten my custody of my kids.
What’s most frightening is that – while I can’t quite bring myself to follow her advice – she is right.
In the Western Mass RLC-produced film, ‘Beyond the Medical Model,’ Robert Whitaker points out just how many times he’s seen families be threatened in this way. (Learn more about the film here: http://westernmassrlc.org/rlc-film-productions/37-rlc-film-productions/200-beyond-the-medical-model.html) What’s most absurd about it all is that no one’s bothering to look at the actual evidence. When parents rightfully argue that there is no evidence that these drugs help long-term, no one listens.
How did we get so invested in this illusion? How did social workers, educators, family court judges and beyond get sold such a baseless bill of goods? How did we get to the point where parental rights can become threatened for lack of willingness to buy in?
We could spend all day talking about that particular ‘how.’ It’s the pharmaceutical companies. It’s a culture that demands easy answers. It’s the new age ways we have of relating (or not relating) to one another. It’s so many things. But a more important ‘how’ looms: How do WE change the world and save our children? Changing the path we’re on is also a complex and multi-layered ‘animal.’ Advocacy, learning, alternatives and legislation are all key.
I’d like to believe that the Western Mass RLC plays a role in all of those layers. We advocate on individual and systems levels. We get involved with making sure people are aware of important legislation. We create alternatives like Hearing Voices and Alternatives to Suicide groups and Afiya, one of only about a dozen peer respite houses in the country. But perhaps most importantly, we build strength through shared learning opportunities and camraderie.
We cannot underestimate the power of knowing we are not alone in believing in something different for ourselves and for each other; In speaking up and demanding change. Knowing you’re not alone and that there’s somewhere to turn and connect with people who can say, “I get it!” and, “Yes, you are making sense!” can mean all the difference between holding your ground verses becoming just another one of the many who move unquestioningly forward to a dangerous and sometime irrevocable fate. Although I’ve always had a rebellious and ‘non-compliant’ nature, being a part of a community like this one has added tremendous fire to my staying power and determination.
This past year, the Western Mass RLC has especially invested time in connecting with others and strengthening our movement. Some of us have become regular bloggers on Mad in America. We’ve initiated a new film project that is calling for international input. (See here for more information: www.madinamerica.com/2013/10/moving-beyond-medical-model-help-wanted/) We’ve also increased our participation in national events and conferences. In September, we were able to participate in five workshops through the annual National Association for Rights Protection and Advocacy (NARPA) conference in Connecticut, and in December, we are scheduled to participate in 8 workshops at the annual Alternatives conference in Austin, Texas.
Unfortunately, we lost our anticipated source of funding to be able to get to the conference. However, the Foundation for Excellence in Mental Health Care awarded us a matching grant up to $8000. Of course, this means that if we earn $0, we get $0. But, if we earn $2000, we get $2000 (for a total of $4000) and so on.
As a part of the fight to change the world, we hope that you will consider helping us by donating and/or sharing this story with others in your circles.
For more information on donating, visit our website at: www.westernmassrlc.org/fundraising-a-support/36-fundraising/239-alternatives-fund.html
And for more information on the topic of this story, consider the following resources (just a few of the many):