I’ve been thinking a lot about the recovery movement lately. Most of my contact with it comes through the Mad In America site. I recently got into an exchange of comments on the MIA site with a person who appears not to want to hear what I had to say because I was a mother, and therefore not a person who qualifies as having “lived experience.” The fact that mothers, too, have lived experience in the recovery movement is not respected in the recovery movement, I am sad to say. Many people in the movement have their own stories to tell about how their parents contributed to their problems. This particular commenter assumed because I am a mother writing about my son that I am an oppressor, an infantilizer, even a castrator, and kept pestering me to allow my son to speak for himself, which is rather a silly attack because there is nothing stopping my son from speaking for himself. He can create his own blog, get his own Twitter account and go for it. But I own my experience and I feel that mothers, too, have a place a the table, whether others in the recovery movement like it or not. Many in the more radical wing of the recovery movement do not want to hear from people who hold opinions that even occasionally differ from their own firmly entrenched view and the hit list includes parents, psychiatrists, people who accept their diagnosis, people who claim they can function on meds, people who believe that vitamins and diet cured them, people who think they have a brain disease, etc. Is the recovery movement big enough and sophisticated enough to learn from each other’s lived experience?
you do have a place at the table…not everyone is ready to recognize or hear from people who are otherwise clearly allies. I’m sorry you feel marginalized some of the time. People who have been gravely harmed sadly do in turn act in abusive fashion sometime.
being divisive helps no one…but that is the universal problem all of humanity faces everywhere. This is it. Yup.
In fact, if I, a mother, hadn’t faught tooth and nail to free my son from psychiatric oppression, he would still be stuck in the system and like you I have so a story to tell. The opposite can be true too of course. I know some parents who keep their sons and daughters firmly stuck in the system.
Thank you.
Yes, Mothers and Fathers do have a place at the table. I think the biomedical model created a place at the table for parents to “keep” their son or daughter on medications. The problem is, in my humble opinion, that the biomedical model also exacerbated conflicted relationships. There is a place at the table for parents who advocate for a more full spectrum of choices at the buffet table. No child should be expected to do this advocacy on their own. No matter what their age. I give you strong support for not allowing your voice to be silenced. We need families to do this recovery work, too!
I have just come back from a meeting with a recovery movement group in Toronto and they have given me much hope. My son does not know how to self advocate, for the time being I see this as my role. Eventually, he will find his own voice. I see my role as helping him find it.
Rossa, you have been inspiring this mother for quite a while. I now stand up for my son when he can’t stand up for himself. There is a place for parents at the table. I don’t see anyone else there for my son. Keep up the good work!
Rossa,
I am not sure who you’re talking about in your latest blog. You say someone, “appears not to want to hear what I had to say…” On that score, I think surely you must *not* be talking about me – because, actually, I *do* want to hear what you have to say (very much so). I consider your input on MIA quite valuable. (Though I certainly find myself in disagreement with you, at times, I find myself disagreeing with *everyone* there, in various ways, sometimes; yet, none do I wish to silence – ever.) You say someone thinks you are, “a mother, and therefore not a person who qualifies…” You insist that, “This particular commenter assumed because I am a mother writing about my son that I am an oppressor, an infantilizer, even a castrator, and kept pestering me to allow my son to speak for himself…” Rossa, it’s not because you are a mother, that I was critical, in my comments; surely, you must realize that – after all, you once praised me for how I commented on a mother’s post. (It was Rael Reddick’s post, titled, “I Know With a Sane Mind When I’m Going Insane”; unfortunately, the comments have all been removed!) I’d left a rather long comment (over a thousand words) for Rael, on June 2, 2012 at 8:22 am. I had praised her for how she’d helped her son find independence; but, also, I was also strongly critiquing her desire to continue calling her son “bipolar”; under my comment, you said to me (on June 2, 2012 at 11:25 am): “Very thoughtful. Good points.”
I have also offered *unconditional* praise to mothers, in my comments, on MIA; e.g., I offered such praise to Suzanne Beachy (November 2, 2012 at 5:33 pm). Unfortunately, that whole page was deleted from MIA. (It was a blog post by David Healy. I think he didn’t like me mentioning his love of ECT.)
To read my full response (which became too long, to post, as a comment), you can find it in my blog, by clicking on the following link:
http://beyondlabeling.posterous.com/an-open-letter-to-rossa-forbes-rossaforbes-ps
Respectfully,
~Jonah
It’s a tough call for mothers, because, assuming that most of us want our adult child to be independent of us, there are long periods when our “children” need our help. I am waiting for the day when Chris spreads his wings and flies. I suspect that there is a common personlity type that ends up with this diagnosis handed to them in their late teens and early twenties. Compliant, gentle and non-risk taking, which means that someone has to advocate for them. I figured my son would eventually learn to speak up for himself, but then SZ came along and it made the situation worse. I don’t want to speak for other people’s relatives, but do you think there is a personality type that gets this diagnosis in young adulthood?
Rossa, the notion of any “common personality type” should be *very* seriously questioned. After all, what is a “common personality type” – really? (Are we not all *unique* individuals, with unique stories, which led us to believe in the constraints of this ‘personality’ which we now exhibit???)
And, as for your saying, “I figured my son would eventually learn to speak up for himself, but then SZ came along and it made the situation worse,” in my view, you are confusing a seeming ‘psychosis’ (which is always a passing event) for this *socio-political* construct: ‘SZ’ (the abbreviation for “schizophrenia”).
I humbly sugggest (for the welfare of your son and yourself): aim to keep “SZ” sandwiched in quotation marks; for, it is a socio-political construct – and a *terribly* debilitating one, at that.
It is a bucket term – describing countless, varied phenomena – and certainly *not* in any way *truly* definitive of any given, uniform set of natural phenomena.
Psychiatrists believe ‘it’ is something that should be controlled by themselves, by their meds, by their ECT. Meanwhile, most of them know: ‘it’ is not effable, not tangible, not containable even by words.
I.e., the *socio-political* construct of “schizophrenia” came along (i.e., the concept was attached to your son’s seeming ‘psychosis’) and made the situation worse.
I pray you’ll realize, you could do nothing better for your son, than to let go of your belief that “SZ” would ever have become his problem (or yours), had you both encountered a good shaman, at the time of his initial crisis.
‘SZ’ is a problem made by psychiatry. Otherwise, ‘it’ does not exist – except as a word which keeps people living in fear.
I pray you will realize – sooner rather than later: ‘SZ’ is an *iatrogenic* condition. ( See Collins English Dictionary: http://dictionary.reference.com/browse/iatrogenic )
Respectfully,
~Jonah