Anger and Advocacy
Sunday, August 12, 2012 5 Comments
by Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
Reactions to the Brain-Based Processing Series
In the twenty-five years I’ve been an ADD Advocate, I don’t think I’ve EVER gotten the kind of response elicited by the Processing Speed posts (*links to posts follow article).
AND, I’m thrilled to report, there was not even ONE flame in the bunch, even though only a few of the missives were of the “You Go Girl!” persuasion.
Thank you EVERYONE!
- For being interested in ADD . . . and-so-much-MORE!
- For being engaged in life and eager to learn how to “drive the very brains you were born with™” (even if they’ve taken a few hits in the meantime)
- For taking time from your lives to draft and send carefully crafted responses
- For being concerned for my welfare (and my feelings)
While drafting private responses, it dawned on me that a public conversation would be more effective, for a number of reasons besides the fact that it would allow me to leverage my time.
Taking the Conversation Public
I believe that there would be a GREAT deal of value in bringing the conversation out of the shadows of email and into the sunshine of the comments section, so that EVERYBODY can ring in.
Where are YOU on the issues being raised?
I can imagine that feelings might be strong, points of view might be strongly worded, and opinions may well be polarized.
The ONLY thing I insist upon is that all posts be thoughtfully considered RESPONSES vs. hot-headed emotional reactions.
My goal is to expand the paradigm and enlarge the conversation — NOT to provide a forum for opinions that are set in stone, unaffected by additional information or exposure to divergent points of view.
I will edit-OUT any remarks or posts that are NOT respectful of everybody’s right to his or her feelings, and everyone’s entitlement to an opinion based on personal background and life-experience, as well as current information-base.
Let’s have NONE of those adolescent potshots and personal invectives that pepper many of the disrespectful comments I often see following content posted on the Huffington Post or UTube.
We can disagree without being disagreeable
Let’s get a real dialogue going on these issues. Grown-ups only, OK?
Email Comments and Concerns
I was touched that the biggest concern in everyone’s mind seemed to be what the effect of my strongly-worded frustrations and unvarnished disdain of those engaged in turf-wars and toadying might have on my personal or professional reputation. I’ll respond to that in a moment.
Over half explained that they were commenting by email because they did not want to put a comment on my blog that might leave the impression that they were not “on my side.”
I hope this post puts those worries to bed.
- I have always been a strong stand for diversity – in opinions, abilities, race, creed, religion . . . you NAME it!
- Students and clients have heard me say – more than once –
“if God had intended us all to be the same,
there would only be ONE of us.”
Although there is always a congruency of Core Values among those I consider best friends and favorite colleagues – which includes respect for the values and choices of others – I believe we are all stronger and wiser as a result of our combined differences.
- Many, like myself, hold their opinions strongly, so conversations can get, shall we say, lively at times.
- At the end of the day we are as fond of each other as we ever were, even though we may or may not have shifted our individual opinions as a result of our (sometimes rather heated) discussions.
- STILL, we would fight like mother tigers to protect one another, if it came to that.
That’s MY definition of being “on my side.” Come to think of it, that’s my definition of “friend” as well.
Personal or professional reputation concerns?
I’ll stand on my record where my personal integrity is at issue.
I believe my work speaks for itself, and I am proud of it.
- Authenticity is one of my values, as is “speaking my truth.”
- I have never been able to bite my tongue when I see something that looks “off.”
I tap danced for others for many years, but I finally came to the conclusion that what they say in songs and poems was true: you really can’t please all of the people all of the time. The little girl I once was is proud of the woman I have become, and her good opinion IS one I care about deeply.
She would be ashamed of me if I “pretzeled” myself, stifling the communication of my core beliefs and values in service of social lubrication (not to mention the HUGE toleration it would become for me, should I attempt it.)
Hiding who I am also makes it likely that I would attract a community that would not be comfortable as a member of the kind of community I prefer to have around me. I would become the rebel with a cause in the kind of community norms they would attempt to create.
The last thing I’ve EVER wanted to be is a toleration in somebody else’s life!
Expanding on that concept, I want to point out that the Advocacy posts represent only a small slice of a great number of pies here at the ADDandSoMuchMore.com cafe. EVEN in that small slice, the tone of the posts – the pie’s spice mix, if you will – varies.
An individual likely to throw my baby out with the advocacy bathwater, is just as likely to find something else that would prompt the same reaction. Like I said, I can’t worry about that.
As long as our focus remains on what others want from us, we are subjugating what WE want from us, what we want from the world we live in, and our role in its creation. Leadership is incompatible with people pleasing. An early mentor of mine said, essentially:
Be your Self with a vengeance.
The faster those who aren’t going to like who you ARE leave your circle,
the more time and energy you will have available
to do what you are on this earth to DO!
Several people were concerned that I would “turn off” those in the ADD community who prefer to focus on “the gifts of ADD.”
ADD certainly brings along MANY gifts — but if refusing to language the impact of it’s deficits means that those gifts become extremely difficult to open, is that really a “positive” stance to take?
- I’m positive that all individuals are CAPABLE of stepping up, doing more, being kind and inclusive, stepping back from ego-based activities, in service of the welfare of others – of supporting a world that works for EVERYONE.
- I’m positive eyes can BE opened to the understanding that we ALL have songs to sing in the chorus of humanity, that the chorus is less beautiful for every missing voice, and that enlightened self-interest yields MORE of what each individual wants personally, not less.
- I’m positive that things rarely change for the better without advocacy – at least not for all, or even most of us — unless, of course, we are content to remain beggars at the banquet. (Isn’t that the fundamental point of the 99% movement?)
- I am also positive that “advocacy” means that people need to be encouraged to speak out, speak UP and vote their convictions, rather than focusing on expressions of gratitude acknowledging tiny, incremental changes.
Acknowledgment is a wonderful thing
We ALL love to be acknowledged for every little thing we do. None of us get enough of that kind of feedback.
It IS feedback, however. Handed out inappropriately, it stunts growth and change as it fans the flame of selfish entitlement. Ask any mother.
- I don’t see the wisdom of equating “positivity” with speaking as if things are wonderful the way they are — especially when they most certainly are NOT.
- They are not even good enough – and “good enough” has never been good ENOUGH for me.
New Clothes for Old Emperors
One of my earliest literary role models was the boy in The Emperor’s New Clothes – the one with the courage to speak his truth, even though he was the ONLY one willing to speak the obvious aloud.
I know I am not the only one willing to speak the obvious aloud. I am, however, one of the ones — one of the ones willing to put my shoulder to the wheel of “rallying the troops.”
Once assembled, OUR job becomes handling the very real NEED for us to rattle some cages to bring the matter of the necessity of increasing research into the dynamics of ATTENTION to everybody’s conscious awareness.
- That includes insisting on research into brain-based links between stress, processing fluency, or anything else that is part of the problem.
I’m sure there are many neuroscientists who would love to study attention more consistently and comprehensively. Few can reach into their own pockets to fund it.
How likely are they to attract monetary interest for a study of an area that doesn’t show up as research-worthy? We can help with that, but not by remaining silently complacent.
- That includes stating, as strongly as necessary, that the very idea that ANY “old guard” can limit new research is as ludicrous as it IS in a field dedicated to scientific truth.
- That includes speaking out with censure about scientific advances that were not taken seriously for decades when Journals refused to publish new work that was “inconsistent with the body of knowledge at the time” — like neuroplasticity. That kind of censorship cannot be allowed to limit communication between scientific fields — or undercut credibility of legitimate studies in minds that equate “journal published” with scientific truth.
- That includes reminding the press of their obligation to do their research before submitting articles with one-sided or misleading information, exacerbating the problem when they could become a significant force for change.
Click below to read what 75 of the top scientists in the ADD field
have to say about that!
International [all-Expert] Consensus Statement
We may have to raise an ARMY to make enough noise to shout-down the Tinkerbell commenters — you know, those in the peanut gallery who seem to think that their opinion on whether Attentional Spectrum disorders are real or not is relevent.
[clap and Tink lives, don’t clap, she dies — Tinkerbell comments]
In support of Neuroscience
One of my correspondents was concerned that I was “belittling” neuroscience. NO WAY!
I am a STRONG supporter of the importance of these studies on a number of levels. Eventually, we’ll have data to back up our claims, and eventually the data will make it into mainstream beliefs, which will change lives on a personal level.
My point is that is studies take TIME that many in our communities don’t have. We have lives we’d like to be able to live with some modicum of success for our efforts. We’re tired of swimming upstream all the time.
Once the results of the studies are published, they will take MORE time to come to public awareness – and MORE time to begin to shift beliefs and behavior norms – and still MORE time to be reflected in our laws.
I believe it is important to undercut the effectiveness of the ”Let’s see what the studies say before we take action” folks.
Their point of view sounds reasonable, even prudent, until and unless somebody points out the problems with that approach: the strong likelihood we will lose yet another generation as we throw those currently struggling under the bus!
If you think I might be overreacting, you haven’t been paying close enough attention to recent ADD medication dynamics.
- Are you aware of the problems that many unmedicated ADDers have been facing getting their prescriptions filled because of medication shortages?
- Are you aware that part of the reason for shortages is the way “controlled substances” are controlled – BY LAW? If drug manufacturers underestimate demand, except in instances of declared emergency, they cannot make-up for shortages by producing more.
20 years ago we called it “October panic.” It’s b-a-a-c-k.
Our lawmakers don’t. It’s not THEIR lives they’re disabling – that suddenly become difficult to impossible to manage effectively, every single time the supplies of OUR medications are inadequate.
Surely, if they’d think about it, there’s a way to protect drug abusers from themselves without disabling those who need the medications to function, not to party!
Don’t forget: the most effective PAIN medications are also controlled substances – so make SURE nobody you love needs them as the year draws to a close. You might not be able to locate a pharmacy that can GET any.
But WAIT – there’s more . . .
- Are you aware that — recently signed into law – medications imported for personal use may now be confiscated and destroyed? Yep. No more running to Canada or Mexico to save money – OR to get medication unavailable here in the US because of shortages.
Some Background – U.S. Policy on Drug Importation and The Letter (and Spirit) of Drug Import Law;
check back or sign up for notification to read more on the recent change in the laws here on ADDandSoMuchMore.com
Those who cannot remember the past
are condemned to repeat it ~ George Santayana
Taking your life from your STAND
One of my Personal Standards is a relanguaging of an old “should” that once ran my life: “Whatever you do, never make anyone uncomfortable.”
“I speak to others in language as kind and gentle as they can hear.“
After 20 years of speaking relatively softly, I’m still not being HEARD. I am resolved to continue to bump up until I am. If I could go back and do it all again, I’d have gotten “louder” MUCH sooner.
Since my primary focus has been the ADD end of attentional spectrum, my examples below will be ADD-related, but they are widely relevent. The Traumatic Brain Injury community, and others whose attentional difficulties result from other causes and diagnoses, report similarly outrageous experiences.
The experts in the field really have NO idea how erratically the diagnostic criteria they create and publish are being interpreted by non-expert doctors – the ones who interface with millions of individuals seeking help. AND THEY NEED TO.
Amnesiacs STILL not Recovered
An entire generation was lost to what I call the “field amnesia” that followed the 1968 DSM-2 positioning of ADD in the childhood section under the name “Hyperkinetic Reaction of Childhood” [HRC] — the year following my High School graduation.
Practically immediately, that action was interpreted — by all but the relatively small number of experts who knew better — to mean, “Oh, it goes away at puberty.”
As a result, I was not diagnosed for another twenty years, struggling and scrambling the entire time (desperately seeking therapeutic solutions for a solid decade.) NOBODY was looking for ADD in an adult, so nobody found it.
- Imagine what I might have done with my life had those twenty years been intentional and productive!
- Imagine the good I could do with the money spent on therapy for various misdiagnoses during that decade.
We’ve lost another generation, since I was diagnosed, in the years I have been “pulling my punches.”
- OVER TWENTY YEARS AGO, adult ADD was scientifically validated, granted “back door credibility” in a PET scan study.
- Since the newly developed technology used a small amount of radioactive tracer it was deemed too risky for a childhood study, so they recruited those ADDults who didn’t exist. — Zametkin 1990.
- IT HAS BEEN THIRTY YEARS since the 1980 DSM-III introduced
“ADD (Attention-Deficit Disorder) with or without hyperactivity”
YET, in 2012, ADDers report difficulties finding help because there are still licensed medical professionals who have not updated their ADD information base – some who claim ADD as a practice focus!
- Some STILL look to gross motor hyperactivity to diagnose AD“H”D
- Some won’t diagnose ADDults seeking help, telling them “they’ve ‘aged out’ of the diagnosis”
- More than a few say that scholastic success makes an ADD diagnosis unlikely
- While others spout a variety of erroneous ideas about treatment protocols — presented as medical fact.
Click below to read my response to ten of those erroneous ideas!
The Top Ten Stupid Comments from [supposed] ADD Professionals
We are poised to lose still another generation unless there is enough “noise” OUT THERE to keep the effect of ill-considered decisions made by the DSM-V caucus from creating a DSM-2 dynamic all over again.
In the context of the above realities, whether or not people “approve” of me sufficiently that they will be willing to engage with my coaching or training efforts seems mighty small indeed, doesn’t it?
If not NOW, when?
In the quarter of a century I have been an ADD advocate, there HAVE been changes. SOME things are certainly “better” than they were fifty or a hundred years ago. Better is not the same thing as “adequate,” however, which is certainly no where near the same as “effective.”
My vision remains firmly fixed on “Optimal” Functioning as everybody’s birthright, despite the reality that things seem to have been going backwards for the ADD community in the last several years.
MEANWHILE, I’d like to point out, in the last 10 years, autism activist efforts have changed the dynamic in their community considerably – because they rallied the troops to band together in grassroots movements, unwilling to accept anything less than full attention to their issues – still.
I’d also like to remind everyone that only once ACT-UP [AIDS Coalition to Unleash Power] reached critical mass did AIDS funding change from a slow drip to a trickle – and only then did prognoses begin to change in the lives of the many afflicted.
WE may not be dying – but, for many of the same reasons (insufficient research funding, low level of community awareness and involvement, etc.), we are not living the highly successful, creative lives we deserve and could experience.
MANY in our community, seriously struggling, are targets of bullying or public ridicule, even in environments where we wouldn’t expect to see it, from individuals lauded for advocacy efforts in overlapping fields.
If a horror like AIDS could be virtually ignored without radical advocacy, is it logical to believe that our fight for funding, research and effective treatment of EFD challenges will be effective without our combined VOICES at the very least?
I am not suggesting that we abandon hope and take to the streets, but worrying about what those I am calling to task will think of me is simply not appropriate, considering my experience that twenty-five YEARS of ADD advocacy efforts have produced precious little change in the LIVES of many of those affected.
What Kind of World might we create if we, over 18 million of us, would speak up loudly and consistently enough that the nay-sayers, disinformation mongers, non-expert speakers, uninformed celebrities, school and hospital administrators, pharmacists, doctors, politicians and “neurotypical” intimidators of all types began to worry about what WE think of them?
A handful of WONDERFUL “neurotypicals” already DO, by the way –
they are out there too, raising their voices on OUR behalf.
How do YOU think we’ll reach the others?
In MY lifetime, I mean.
ACT-UP graphic: Wikipedia via Zemanta: Berlin Wall grafitti, taken at D.C. Newseum
Flaming Skull graphic: freeimagesarchive.com
Thumbs up graphic thanks to IIT Bombay
Emperor’s New Clothes graphic: Smart Exchange – the resource for educators
* August’s Processing Speed Posts
Other Advocacy Posts here on ADDandSoMuchMore.com
- Tales from the ADD Dark Side – Difference or Disability?
- Reframing Change for World Leaders – one of the
What Kind of World do you Want Series
Related Articles – activists for neurodiversity
- Brain Pathways Blog – The Neuroscience of YOU
- The Unbroken Spectrum: ridicule (Shift – Journal of neurodiversity)
- Fearing advocacy, Ottawa rejects HIV/AIDS funding proposals (theglobeandmail.com)
- World’s largest AIDS conference convenes Sunday (miamiherald.typepad.com)
- The End of AIDS? (hivpolicyspeakup.wordpress.com)
- Thank Mitsubishi for supporting an Autism Campus Inclusion Leadership Program (leftbrainrightbrain.co.uk)
- Blue is only one portion of the spectrum (gingerheaddad.wordpress.com)
- Today’s Autism Heroes: Three Rockwood 6th Graders (beyondautismawareness.wordpress.com)
- AC Lens Teams up with Autism Speaks to Promote Walk Now for Autism in September (prweb.com)
- Autism Speaks Celebrates Autism Awareness Month With a Series of National Awareness and Fundraising Initiatives (prweb.com)
- Karen Chung, Serial Entrepreneur, on Bringing Autism Services into the 21st Century (thenextwomen.com)