Today, Thursday, 1 December 2022 is auspicious. Ten years ago on this very day, I climbed a ladder in my writer’s studio to retrieve our cat Bongo from a loft. I fell and broke my neck. During the next month of intensive care, my disabilities grew. Because of complications, it took weeks to operate, impairing my communication: voice, fingers, etc.
You may remember that historic month ten years ago, December 2012, because the Mayan Calendar cycle stopped. That time was supposed to have an ending, but profound creative transformation in the future. That sure applied to me.
Now I am a quadriplegic in a power chair. I am dictating this to my superb Aciu! Program Coordinator Kiana with my challenged voice, which a disability advocate in a meeting recently compared to a “barking dog.” To mark this occasion, here are a few lessons I have learned over this past decade. Since humanity may soon find itself in its own sudden collapse on the floor, perhaps a few others might benefit from my top ten, starting with #10.
10. MAD PRIDE, THANKS!
Several friends have used that word “inspirational” about my persistence and attitude. I know many disability activists are bugged by that word “inspirational,” but I have to say I have kind of inspired myself over this past decade! Instead of “My Journey,” I should say “Our Journey,” because my super-amazing wife, Debra, and I have discovered we are more resilient and stronger than we ever thought. Seriously, during my whole life I have had deep and incredible support of so many family, friends, and other resources, thanks. The idea of finding a silver lining in a catastrophe is a beautiful concept from mental health system survivors. May we all find a way to celebrate being different, transforming oppression, and overcoming overwhelm.
9. THE MOVEMENT, THANKS!
When I started my community organizing 46 years ago, we activists were surrounded by the 1970’s social change ferment of the anti-war, women, eco, civil rights, LGBT, disability, prisoners, etc. movements.
Back then in ancient days, countless activists including myself just thought of ourselves as part of The Movement, one big united global force for nonviolent revolution. Little did I know then, that our international grassroots movement of mental health consumers and mental health system survivors (sometimes called C/S) would continue to remain so invisible over the decades.
Silver lining of our obscurity: We are a very real deal social change movement, and for whatever reason each of us has the incredible honor of working with one another: positive, creative, amazing leaders.
8. ACIU!, THANKS!
For most of my life I have worked with nonprofit social change groups. But a few years after I fell, I thought it would be fun to start a for-profit business. I was correct, it is fun! I founded our green disability consulting firm, Aciu! Institute. What does “aciu” mean? Aciu is pronounced like a sneeze: “Ahhh-chooo!” In Lithuanian, this simply means, “Thanks!”
I started by being one of the many consulting editors for the World Health Organization toolkit, QualityRights. I have done several speaking engagements across the U.S. and even internationally via Zoom for conferences in Wisconsin and North Carolina, two national events, and even a workshop in Portugal! I’ve mainly consulted for MindFreedom International, to re-build their Support Coalition. No client is too small or big, see: www.aciu.info
7. UNLEASH ME, THANKS!
After I fell, thousands of individuals sent letters, donations and even a hand-crocheted prayer shawl. Over the years, several folks have continued to donate to my medical Irrevocable Trust, which my family was able to set up thanks to a helpful Oregon law. While Medicare and Medicaid cover my basic costs, this trust has been crucial for my independence. Supporters have now pledged a $4,000 matching fund – for every dollar you give, they will provide an extra 50 cents. For more info and to give one time or monthly, see www.supportdavidoaks.org
6. THE YEAR 2222, THANKS?
Wise Indigenous tribes native to North America have advised us all to think ahead seven generations. Personally, to help me visualize this, I chose the year 2222. Surely two centuries are enough for seven generations, if humanity survives.
Apparently many people do not understand what almost all scientists are warning us, over and over: We are collectively reaching a tipping point, where cascading, chaotic, triggering, climate feedback loops may make the current crisis far worse and irrevocable. Will we reach a runaway “Venus effect”? We don’t know, but we do know by taking immediate action we can help humanity and countless species increase the chance that we will reach the year 2222. We need positive visions, positive ways to think totally differently, positive peer support, and positive nonviolent revolution! MAD Pride!
5. UU, THANKS!
Before my fall, as a pagan I would sometimes do a fast for a few days in the remote Oregon wilderness. After my fall, I realized I needed to build my spiritual community in an easier way. The Unitarian Universalist (UU) Church in Eugene refurbished a large building in our neighborhood, and they were very supportive during visits. I’ve become active in both local and national UU activities, mainly for people diagnosed with mental or physical disabilities.
4. MIND JUSTICE, THANKS!
Because of amazing activist leaders like the late Judi Chamberlin & Justin Dart, I connected mental health issues to the disability movement for decades. But it took my life-altering accident to build a huge, solid bridge between mental and physical disability.
Yes, I know that many of us mental health system survivor organizers reject connecting psychiatric labels to disability. Of course, like LGBT leaders before us, we challenge goofy, destructive, false psychiatric labels that are irrationally slapped onto us.
But hold on, radical psychiatric survivors, did you know many disability activists reject or do not use the term disability? Did you know that many Indigenous tribes did not even have a word for disability? Did you know that many deaf and hard-of-hearing activists see themselves as a community, not a disability? And anyway, what kind of an excuse would it be for a man to say, “I am not a woman therefore I will not support or connect with the women’s movement”? I would like to bridge our movement to other marginalized voices, including the neurodiverse, brain injury survivors, intellectual and developmental disability, LGBT, BIPOC, and many more. I call this concept “Mind Justice,” and we already have so many leaders that build these bridges. Keep it up, to nonviolent revolution!
3. MENTAL HEALTH CONSUMERS, THANKS!
By far, most individuals who have “lived experience” with the mental health system, and currently use part of that mental health system, would call themselves “mental health consumers.” If that includes you, I would like to encourage you to also consider how you may be a mental health system SURVIVOR, too.
For this past decade, I have regularly met with a superb mental health therapist, mainly to work on what would be labeled PTSD. My experiences with my counselor have always been positive. But also please reflect on how even having a connection with a psychiatric diagnosis, whether you reject or accept it, can and does indeed lead to discrimination in our current society.
Even if you never use the mental health system, ever, I feel you are a mental health system survivor, because this industry has suppressed and limited what it even means to be human.
2. MENTAL HEALTH SYSTEM SURVIVORS, THANKS!
Those of us who have experienced trauma and oppression within the mental health industry face some unique challenges.
When we were in some of the most vulnerable times of our life, individuals who had been trained and licensed to supposedly support us, betrayed our trust, in so many different ways. While I have lived experience with involuntary psychiatric drug injections and solitary confinement, I have met individuals who have gone through dozens of forced electroshocks, decades of homelessness, years in institutions. When the trauma is caused by a helper, who do we turn to for help? That said, over this past decade I have had a chance to reflect. The extreme hurt and oppression we have experienced can sometimes overwhelm us into a lifetime of bitterness and isolation.
More than ever, I appreciate MindFreedom International, which I helped start and was Executive Director of for 25 years. MFI has always been wide open to all who support human rights, including attorneys, family members, and mental health professionals. But a survey showed that the vast majority of MFI members identified as psychiatric survivors. I appreciate that so many mental health system survivors have stayed on the side of love. This viewpoint has helped sustain me over this past decade, and kept me in touch with so many survivors.
1. THANKS, BUT…
And my top lesson from this decade: There have been so many people to appreciate. Many times I realized the main help I needed was simply showing my gratitude to so many folks. You may be one of the individuals I have hoped to thank, so thanks!
That said, I have learned that while thanking is so very undeniably important, if I had any advice to someone facing a similar disaster, I would encourage you to keep REACHING OUT. In a way, especially in our current society, building community is important for everyone. But especially for those experiencing extreme sudden disability, after any initial support, please continue to build bridges to family, friends and the world. Just because I had a lot of support including activism and a unique social change movement for 46 years, even I have not been invulnerable to the sometimes-subtle, pervasive tendency to isolation, or what is sometimes called “ableism.”
Wow, So How Can I Help Mark This Occasion?
- MAD Pride: One of my wonderful homecare workers and I created a small discussion group about this international way to celebrate. Please join our MAD Pride group within the free, enormous, discussion platform Reddit: https://www.reddit.com/r/MadPride/
- MindFreedom International: If you are not a current member, or you may have let your past membership lapse, or even if you’re not sure, please consider a donation to this unique nonprofit: www.mindfreedom.org If you are with a social change group, or would like to start one, ask me about MFI’s Support Coalition.
- Aciu!: While it would be wonderful if you visited my green consulting business, Aciu! Institute, website; even better is if you would like to be an advisor or client. Please just visit www.aciu.info
- A reminder: You probably noticed that I made a pitch for my medical Irrevocable Trust, so here is a reminder to give once or monthly: www.supportdavidoaks.org.
- My Enews: To stay in touch with this and other ways to connect, please sign up to get notices about my personal blog, which you can do here: https://lp.constantcontactpages.com/su/pRPKrcN/davidwoaksnews
- Oregonian? If you live in Oregon, please be in touch with our MindFreedom Oregon Affiliate of MFI. You can get on our newsletter here: https://lp.constantcontactpages.com/su/ogYdErA/mindfreedomoregon
- MindFreedom Oregon: For an example of what MF OR is doing, check out this analysis about the exclusion of our voice: https://aciu.info/2022/11/29/lane-county-csc-concerns-news-analysis/
- UU? On Facebook, please search for and join our group: Mental Health Justice UU.
- Our local UU Eugene Church has an Accessibility Task Force, and I am co-chair. While we mainly cover Eugene, Oregon disability news, we also try to include some national UU disability resources. Anyone is invited to get our free, occasional news here: https://lp.constantcontactpages.com/su/MxNirL8/uuceatf
- Be in touch: My personal email address is davidwoaks@gmail.com. Our consulting email address is revolution@aciu.info.
- And please add your comment here, I try to respond to every comment, and I’ll do my best.
(Correction 12/2/22: I originally wrote I’d been an activist 42 years; but I started in 1976, 46 years ago )
Thank you so much, David, for this article and for all that you have done and continue to do for the movement(s), and for me personally, over the decades. I’ll never forget calling you up from the bin in 2007, saying I wanted to kill myself because I’d been locked up yet again – and you telling me that I should consider myself to be doing “field work” and that the movement needed me; and also that I should never say such things where a psych nurse might hear me. Lots of love to you.
I’ve long appreciated the way you have long leveraged our C/S experience as a great potential resource for humanity facing colossal ecological collapse. To point to one of shortcomings of the dominant diagnostic model of “normal” vs “ill,” I’ve said that all intelligent organism experience distress when they perceive threat in their environment. To not be “disturbed,” by the many signs of human destruction of ecosystems is denial and a bigger problem than being disturbed by it.
I appreciate your recognition of our c/s experience as wisdom born of experience. It’s like Indigenous wisdom that whenever we are exposed to something toxic, the cure or antidote can be found usually in very close proximity. And from our experience we have learned that along with our wounding, we had gained access to new powers, new gifts! If we lucky we never view anyone marginalized or discarded by society through the same lense again.
You have always called me to proudly claim my “MHSS” identity, as a badge of honor. When I look at medium human behavior, I’m proud to be “positively crazy.” And yes, I’m proud to be a person with several disabilities. Although I no longer use a wheelchair, and am no longer visibly identified as disabled, I am proud to have survived a collision that left me impaired in many ways. I am a TBI survivor.
I navigate life with brain and intellectual impairment.
In the 33 odd years since I subscribed to “Dendron,” and the almost 30 years you have influenced me as a friend, mentor and colleague, this just might be my favorite piece of writing from you. As Justin Dart told you “Lead on!!!!”
So well said, Phillip. We live in traumatic times, and we would be numb if we didn’t have strong reactions. The key for me has been to channel the energy of my anxiety into activism, writing, and giving of myself and my experiences in the most beneficial way possible.
I can feel no other word beyond inspiring. David, it is indeed a pleasure to have found you in the land of the hopeful when it comes to mental health.
David, You certainly have shown tremendous courage! You are an inspiration to us all! Mike Sturman.
Thanks David, it’s good to hear your thoughts as always. One new thing I got out of reading this was the term “Mind Justice” – I like it!
‘The idea of finding a silver lining in a catastrophe is a beautiful concept from mental health system survivors. ‘ 100% agree! Hope is not about waiting for or trusting things will improve. It is about improving your perception so that you notice all the good already here, including opportunities with actionable steps.
Beautifully said!
Keep on living life up to the hilt dear David! And I always trust most those who are barking… x
Wonderful and INSPIRATIONAL blog, David! Here’s to the next 42. 🎉
PS What happened with Bongo? 😺
David,
You are truly an inspiration for me. As a proud psychiatric survivor, I feel strongly that it is imperative that we totally change the mental health system in this country! You have always inspired me in this direction. I recently had an over 3 year episode of extreme emotional dysregulation and now, with a few months of wellness under my belt, I am not quite ready to take on this farce of a mental health system , but after some time… Well, we’ll talk. Hope to connect with you soon!
David, I love your sense of humor and how optimistic and positive you have always been. And yes, you are inspiring!! I feel so grateful to have known you for so many years!
David, I cracked up when I read your comment on people saying you inspired them, basically saying
“well shit, I guess I find myself inspiring too!”. I laughed because it reminded me your irreverent sense of humor and also because its true- you should be inspired.
I met David and learned about Support Coalition in 1990. He has always been a great advocate and I value his perspectives.
I am so happy to hav connected with you and MindFreedom since moving to Eugene 3 years ago. Thank you, David, for your important work. Attending MindFreedom talks has awakened a long-buried psychological injury of being labeled with an unjustified serious mental health diagnosis by a a therapist at a vulnerable time in my life. I see now that that damaging experience led me to leave my career as an entertainment attorney and become a therapist myself, working from a wellness rather than pathological model. Thank you!
I appreciate you being the first to comment here, Beth. First of course it is always wonderful to bridge psych survivors, especially here in Eugene. Many of us stay in the closet.
Second, I hope people note that you wear two hats: Survivor and therapist. There are many two- hatters, but many are in the closet, especially if they have been labeled. Come out, like Beth!
Thanks David for being an inspiration.
My son is just out of psych ward after five years where they refused to change his drugs. They finally did and with the help of a friend is out and about hiking and spending a lot of time outdoors. Do you know if any underground railway type group they could stay at as they travel throughout USA and Mexico?
Thanks. I have promoted the idea of underground railroads for decades. Please note that anyone using such a way to escape is acting on THEIR OWN and others are not legally responsible. Julie, why don’t you phone me at my consulting number, 541-914-1469?