Here is the description of the whole event from organizers:
PEERPOCALYPSE is a conference of leaders, emerging leaders, innovators, and peers who want to become more involved in the peer community. Adopting the philosophy that peers bring with them a great deal of knowledge and expertise, the event is about bringing the community together to share information, skills, and experience.
Comments Off on Re-establishing My Credentials: Psychiatric Survivor Activists are Needed by the 100%, Now!
The popular blog site Mad In America just published my post about my psychiatric survivor #MadPride #Disability journey since I broke my neck in 2012: (If you would like to hear this as a voice synthesized podcast, click play below.)
By David W. Oaks
For more than four decades, I have worked as a psychiatric-survivor human rights activist. Then, at the end of 2012, I broke my neck. As readers of my blog posts, such as those on Mad in America, know, I have devoted the past few years to rehab and activism. But it has been a while since my last personal blog. Let me sum up my Mad Pride journey today, because a lot is changing.
As a quick background, all of my grandparents were immigrants from Lithuania. Both of my grandfathers were coal miners for a combined 31 years. I was raised in a very working-class neighborhood on the south side of Chicago, and got a scholarship to Harvard. During my sophomore, junior, and senior years, I experienced the psychiatric system. This included involuntary psychiatric drugs, such as on the sharp end of a needle while being held down on a bare mattress on the floor in solitary confinement.
During my junior year, Harvard’s volunteer social change agency, Phillips Brooks House, referred me as an intern at Mental Patients Liberation Front in nearby Central Square. MPLF is one of the very early psychiatric survivor activist groups from the 1970’s. After a total of five psychiatric lockups I graduated with honors in 1977, and studied community organizing with the infamous group ACORN, based on the methods of Saul Alinsky. Community organizing with psychiatric survivors became my career.
MindFreedom International: Winning Human Rights in Mental Health!
Fast forward: I co-founded and was Executive Director for 25 years of the independent nonprofit coalition, MindFreedom International (MFI) which fights for human rights in mental health. MFI has always been wide open to everyone who supports human rights, including attorneys, mental health workers, family members, and the general public. But surveys show that a majority of MFI members identify as having personally experienced human rights violations in the mental health system, that is, psychiatric survivors.
Because MFI’s constituency tends to be low-income, most groups in this field need to rely on government support to exist. That is understandable. But an amazing thing about MFI is that it has always mainly been supported by donations from individuals, poor and rich, and some private grants.
Because of this independence, MFI has always had a different center of gravity than most similar groups: Revolution! We at MFI always attempted to connect with other movements for social justice, such as prisoner’s rights, LGBT+, anti-racism, anti-poverty, and environmentalism. For the last few decades, one of our closest connections has been with people with disabilities.
A Tale of Two Movements: Psychiatric Survivors and People With Disabilities
Frankly, the connection between psychiatric survivor Mad Pride and the physical disability movement has been a bit complex, and sometimes even challenging. For example, there appears to be a difference about the issue of diagnoses. Don’t we radical psychiatric survivors reject all labels? Don’t people with physical disabilities often rely on their labels? Yes, “disabilities” are socially constructed; it is our society that is disabled. But I am aware that some leaders do not always understand our unity.
Unfortunately, I have even seen a leader of a disability Independent Living Center falsely say, repeatedly, that MindFreedom pushes people to quit psychiatric drugs. Wrong. In fact, there are many MFI members who willingly choose to take prescribed psychiatric drugs, and they have told me they feel totally comfortable and accepted.
Both the psychiatric survivor movement and the movement for people with disabilities are united in their goals. Both support the empowerment and choice of the Marginalized And Disempowered (MAD). I’ve written about this before, and I will again, but this is not my point now.
For now, I will point out that calling someone a name they do not want is labeling. Asking for a diagnosis from a pro you trust, willingly, ain’t labeling. More later, but for now, understand that the unity between psychiatric survivors and people with disabilities is more than theory for me. It is my life.
Our Cat, Bongo, Plays a Key Role in My Life
At the end of 2012, in an attempt to retrieve our cat, Bongo, I fell and broke my neck, becoming a very disabled quadriplegic in a power chair with impaired voice and hands. I do not recommend this drastic approach, but one silver lining is that now I have absolutely no problem at all bridging both the psychiatric survivor movement and the entire disability movement!
As some of us activists have joked about ourselves when we encounter challenges again: I have “re-established my credentials.”
Because of my profound disability challenges, I needed to retire from MFI in 2013. During the past seven-and-a-half years, I have been working on rehab.
I have improved my breathing by twice-daily exercises with heavy weights and an incentive spirometer, bringing my capacity from one-fourth to one-third typical breathing. A great improvement, but I am of course, at the age of 64, one of the most vulnerable folks during the COVID-19 crisis.
I have sought to improve my impaired speech. This has involved years of speech therapy and a surgery on my vocal folds.
Before my fall I could type 120 words per minute, now I cannot type at all. So I have worked to improve my memory because projects and writing need to stick up there, in the mind. Now, in one sitting, I can pretty easily and reliably memorize two shuffled decks of cards (a total of 112 cards, counting jokers and promo cards). I can repeat the memorized order of cards, blindfolded, in about five minutes. I have recited shuffled double decks perfectly 37 times.
There are many other ways I have applied the lessons I learned in our psychiatric survivor movement to my own rehab. For example, back in 1989, I started a men’s support group called the BUBS. During this COVID crisis we have been meeting weekly via Zoom. This sort of small group, mutual peer support, as we know from our movement, is invaluable to rehab and surviving a crisis.
Before my fall, as a fiercely independent Pagan, I relied on my occasional trips to the Oregon wilderness for three days of fasting and reflection. In fact, after one of these trips, I recorded a brief statement, which can be found on YouTube by searching for:david w oaks neptune beach.
Since my fall, to make things easier, I have joined the nearby Unitarian Universalist Church. Yes, a church. I am glad I did, because the UU philosophy works for me, and they are very supportive of people with disabilities. For example, I helped re-start an Access Committee at our church with support from the reverend.
But What Would Judi Chamberlin Say?
As I have expressed, and many other psychiatric survivor activists know, I have always fought against involuntary and unscientific diagnoses. “Label jars, not people!” as my friend in MPLF, the late Judi Chamberlin, liked to say.
After my accident, I clearly had thoughts and feelings consistent with classic Post-Traumatic Stress Disorder, such as recurring vivid nightmares of falling off my bed that would continue after I woke up. Folks, I cannot even budge once I am lying in my bed!
I have found my psychotherapist, Dr. John Bundy, to be very helpful in addressing these problems. Finding a psychologist that works for me took a bunch of my skills and networking from our movement. Dr. Bundy is superb, and because of a childhood accident, is 100% blind. Perhaps we connect more as peers because of our disabilities.
Yes, many friends and family have encouraged me to write a book, because there are many other tools from our movement I have used in my rehab journey, that may help the general public now.
Silver Linings of Planetary Crises: No New Normality!
Looking for silver linings is one of the lessons I gained as a psychiatric survivor with major physical disabilities. Today, as the whole world struggles with COVID-19, there are quite a few silver linings. One of these is that undeniably we are all connected in one planetary community, obviously and deeply.
To the right are images of my home care team wearing masks. This montage is a tribute to these truly essential workers, crucial for my independent living and our household. One of my home care workers pointed out that essential workers have always been essential, even before this pandemic. Good point. Mainly, I need help thanking and giving credit to my home care team.
Ačiū! Ačiū! Ačiū! This is an ancient Lithuanian word that means “thanks.” This gratitude is why I named my consulting business Aciu! Institute. Thank you, everybody, for your support!
During this rehab, I have attempted to blog now and again. But I will now try to do this more frequently. I believe there are real life lessons from the psychiatric survivor and disability movements which can assist the general public right now, in this era of viruses and climate crisis. I have often heard media outlets say people with disabilities or mental problems make up ‘x’ percent of the public, such as 18% or 15%. But, for example, everyone on Earth addresses the severe trauma of how we treat nature. Scientists suggest that none of us have, or even can, get a grip on reality.
We are now all the 100%. In today’s world, if you are not crazy you may be nuts!
Today we often hear about how “normality” is gone. But normality never really ever existed. Kind of like a unicorn. Many are now talking about a future “new normality.” But this is a lie! Normal is dead forever. One way or another, for better or worse, we won!
This year, my consulting business, Aciu! Institute, LLC, has its second major client, MindFreedom International! I report to their superb director who has taken my place very well, psychiatric survivor Ron Bassman of Colorado. I am helping build their network of Affiliates and Sponsors, updating the list of past groups and finding new ones. One of the uniting tasks that Ron is encouraging for these groups is to support a retooled MindFreedom Shield. Shield is a campaign to support individuals who are expressing concerns about their involuntary psychiatric procedures, issuing human rights alerts that encourage action, similar to pressure campaigns by Amnesty International.
Here in Eugene, Oregon, USA, we continue to build our own MFI local affiliate, MindFreedom Oregon and MindFreedom Lane County. We meet every month by Zoom now. Contact me if you are interested: email@example.com.
MindFreedom has always called for a global revolution. Wouldn’t a planetary revolution be a nice thing to try? Is there any other way? We can discuss what kind of revolution, but at least talking openly about this would be a start.
As well as MindFreedom, my Aciu! Institute consulting business is assisting a variety of disability and mental health groups. I will blog about this in future posts. Even though I only work a few shifts a week from home, working remotely with my superb administrative assistant Fian Peng, launching Aciu! helps my purpose and meaning. I last ran a for-profit back when I was a little kid, selling seeds and lemonade. I then worked for decades for wonderful nonprofits. It is a blast returning to a for-profit dedicated to social and environmental change!
Building Support for the Next Phase: Revolution!
After I broke my neck, the values and wisdom from our movement helped me each day in my real-life endeavors. Many call this inspiring. I call our social change Mad Pride movement inspiring. Once in a while, someone will question the whole idea of “Mad Pride.” (I sometimes wonder if they like “Normal Shame.”) But for the last few years, our Mad Pride crazy wisdom has helped support and sustain our home, my independence and my life.
One skill I learned in our movement was grassroots fundraising, from many people, poor and rich. While I was in Craig Hospital rehab, we held a number of support drives to raise funds. For instance, quick support from people like you is how I bought my wheelchair van.
Since then, I have not done much fundraising. For one reason, my wonderful wife, Debra, and I live a comfortable life on our quarter-acre homestead we call Mad Swan. One of the absolutely best things in my early adulthood was falling in love with the amazing and always-fascinating Debra.
But while we are not struggling for food, I do want to use my background and experience to help justice and transformation today.
My family created a “David W Oaks Irrevocable Medical Trust” that supports my independent living. Support from this trust is helping me launch my Aciu! Institute consulting.
I pledge to post more often to my own personal blog (www.davidwoaks.com), my consulting business blog (www.aciu.info), and of course Mad in America, which has helped amplify my concerns over the years, so that I know my leadership is still here and helpful.
More than ever, I especially value your feedback. The Mad in America community is vibrant, and I look forward to your comments here. I will try to reply to as many as possible. You will now also find me frequently on Facebook, including our group UU Mental Health Justice. On Reddit we have created subreddit r/MadPride. On Twitter and LinkedIn, let us explore what challenges and opportunities can be found in the intersection of #MadPride and #Disability. (You may comment here, and/or join the lively debates in the comment area at the end of my post on Mad In America.)
Editor’s Note:If you wish, you can make a one-time or monthly donation to David W. Oaks Irrevocable Medical Trust. Your gift is not tax-deductible, but is very important to his independent living. He is launching his consulting business, Aciu! Institute.
Comments Off on This Thursday 5/7/2020: Free Zoom with Doc and Panel on Disability Rights
You’re invited to a free Zoom this Thurs 5/7 sponsored by MindFreedom International. Watch recent doc on empowerment of people with disabilities, plus a panel discussion (I’m on panel). PISS ON PITY: WE WILL RIDE traces origins & early history of ADAPT. Beginning in Denver in ‘83, ADAPT has become a national force utilizing civil disobedience to fight for the liberation of people with disabilities from institutions & for equal access to society.
After a year-and-a-half of preparation, I am finally about to officially launch my consulting business, Aciu Institute. More about that soon.
Memorizing 112 Cards
Readers of my blog know that I have been working on my memory, in order to prepare for launching my consulting business. Rather than just memorize the order of a deck of playing cards, I have been using a double deck. My home care worker shuffles these decks, and I memorize the order.
When you open a typical Bicycle deck of playing cards, there are of course two jokers (black-and-white & color). There are also a couple of promotional cards. Now I include all of these cards. So yesterday, I memorized a total of 112 cards, and repeated the order back blindfolded & perfectly. This is the 15th time I have memorized a double deck, but the first time I have memorized so many.
Like me, perhaps you have been very interested in the new group started in London called Extinction Rebellion. They have used nonviolent civil disobedience to help activate the globe about the climate emergency.
Recently, this past Friday, 24 May 2019, we held a People’s Assembly for Extinction Rebellion here in Eugene, Oregon’s Kesey Square. In my small group, I focused on a theme from Extinction Rebellion: Regenerative Culture.
We in the disability and mental health activism movements have long ago promoted peer mutual support for our wellbeing despite trauma. Now, I would argue that 100% of the public are in the big tent of our movement, because of the climate crisis. Everyone is physically disabled by this emergency. Everyone is traumatized with grief, perhaps so deeply they might not even know it. Yet.
July: Mad Pride Month
One of the clients Aciu Institute is supporting is the local affiliate of MindFreedom International: MindFreedom Oregon. Our regular monthly grassroots meeting will be a week from this Friday, the first Friday of June, 7 June 2019.
Local psychiatric survivor activists TC Dumas & Christina Peirsol will join me in calling for a number of activities during July 2019: Creative Maladjustment Week, speaking with Patch Adams, MD at the 50th Anniversary at the Oregon Country Fair, and finally a free public gathering for the Opal Network.
I believe I will call for us to declare every July from now on to be Mad Pride Month. Sound good? Your feedback and comments are welcome.
If you are interested in attending our MindFreedom Oregon meeting and helping to plan these fun activities, email us at firstname.lastname@example.org.
The name of my consulting business is Aciu Institute. “Ačiū” is an ancient word in Lithuanian meaning “Thanks.” Thank you, everyone, for supporting me, my rehab, and the launch of this business. Let us have the nonviolent global revolution we need, now! If not now, then when the heck?
Me, David Oaks, middle in front in my powerchair with my big brother Tony Oaks, friend Rev. Phil Schulman (center, standing), and my wife Debra Nunez.
One of my very best friends for many years is the creative, loving, wise, funny Phil Schulman. Phil is a minister who has led several Unitarian Universalist congregations. Phil has been such a prominent, positive leader in so many movement gatherings of mental health consumers and psychiatric survivors that I affectionately call him “The Mad Movement Minister”!
In November 2017, while biking from home to an Alcoholics Anonymous meeting (Phil has been clean and sober for many decades) a truck hit him. Phil suffered a major traumatic brain injury (TBI). He spent a long time in a coma. Since then he has devoted much of his time to recovery in a way that models values of our movement. He has shown faith, humanity, empowerment, community, humor, love, peer support, spirituality, wisdom and so much more.
Recently, I heard a sermon Phil gave about a year after his accident, speaking about commercialism during the Christmas 2018 season. His wisdom and witty love for life shine through his impaired speech. Or perhaps his disabled voice underscores his message, because he is living our values! You can access and listen to this sermon here: https://www.dropbox.com/s/5vknvi3gk4018zg/Phil_Christmas_sermon18.wav
Last week I had the pleasure and honor of nominating Phil as a speaker in one of the main gatherings of our movement.
Below you can read some of what I wrote:
I have been close friends with Phil for several decades. I myself have been an activist in the mental health consumer / survivor movement for more than four decades, including co-founder of MindFreedom. Since 2012, because of disabilities, I am semi-retired. In all my career, I would consider Phil to be one of the greatest treasures in our movement. I give him my very highest recommendation for your keynoter.
Phil became a minister and has served as a church leader in several congregations in several states. He is also an advocate in the peer “lived experience” consumer / survivor movement. Phil has actively participated in many Alternatives conferences, NARPA conferences, etc. In fact, I and a few others refer to Phil affectionately as “the mad movement minister.” As I noted, Phil has a lived experience with several mental distresses in his past. He has been clean and sober for many decades, regularly attending AA.
Phil, shortly after his 2017 accident, when a truck hit him on a bicycle.
It was riding from home on his bike to an Alcoholics Anonyomous meeting in Florida back in November 2017, that Phil, as I say, “re-established his movement credentials.” A truck struck Phil as he rode his bike that night, throwing him into a coma with extreme and severe head injuries. Phil also had a large number of challenging physical impairments.
Phil has dedicated the last year-and-a-half to showing us all the value of our movement beliefs. Phil has activated a network of supportive community leaders. He has engaged in many hours of extensive rehab regularly. He has applied his extensive wisdom of spiritual growth.
Let me give one example. Last year, he was one of the speakers in the nationally-popular New York Association of Psychiatric Rehabilitation Services (NYAPRS) conference. Even though because of his TBI Phil speaks differently, even though he has several other extreme physical challenges… or perhaps partly because he has all these disabilities, his speech was very popular, powerful, moving and helpful. I have personally listened to a sermon he gave not too long ago, and his wit, humor, wisdom shines through as it did before his injury, with dozens of sermons. Below is the text from his NYAPRS speech, and you will find some of his bio here:
Phil has spent countless hours doing rehab, including physical therapy, for his recovery.
November 6th, my bicycle and I were struck by a ½ ton Dodge Ram
truck. Thanks to a prompt emergency medical response and surgery, I
did not die. The extent of brain damage was unknown. There was
uncertainty if I would walk or talk again. Ten months later, here I am.
I am really happy to be with you. I have worked hard to regain abilities,
including my speech.
A member at the clubhouse I attend, told me that he loves my NJ accent.
I said “What are you talking about? I don’t have a NJ accent! I have a
brain injury accent.” Ok sometimes my Jersey accent comes out a little.
I am hoping that in the future I’ll be able to say “Sometimes my head
injury accent comes out a little.”
Thank you for being here today! There are times in life when we really
appreciate people showing up. Like the first time we do something,
when we become ill or injured, after the death of a loved one, … it can
mean so much to have companionship. True?
Many people reached me out to me after learning of my accident. I was
so moved to hear that communities all over the country were praying for
me. To this day, one line posts on FB lets me know that friends are still
caring and following my progress.
Support has helped me to achieve spectacular results in recovery.
Decades in wellness and recovery communities prepared me. Lessons
and tools from past trauma have helped me too!
For example, I was seventeen when a close friend killed himself. I was
thinking about doing the same. I saw so much injustice, and believed
myself to be indelibly flawed and unable to make a difference. I didn’t
see a reason to continue living. I yelled at G*d “What do you want from
me?” I instantly received an answer; 3 words “Just show up,” and a
memory of a friend listening to me compassionately. I was defeated in
my argument with G*d. I knew that if I would follow these instruction,
it would make a difference.
After a few more years of substance abuse, in another conversation with
G*d, I swore off toxins. I started swimming daily hoping that I could
heal the damage I had done. Over the next decade I found various
communities that offered gifts for recovery.
At age 25 I began seminary, and was introduced to a form of peer
counseling that helped me to understand individual trauma in a context
of societal oppression. It taught me to feel pain and allow tears in order
to release the lingering effects of trauma.
At 29 I was given a spot in a very expensive and lengthy outpatient
Codependency Treatment Program. The director said that I was manic
depressive. He told me that if I needed to take lithium or leave the
program. As soon as I completed the 8 week program, I stop taking the
lithium. I had connection with this human rights movement, with others
who were resisting coercive treatment. My peer counseling practice
became critically important to me.
I got a job as a counselor on a hospital addiction unit. My peer
counseling teacher was hired to provide training, and our staff began
practicing peer support. The head nurse began asking me to visit
patients at about the 18 th day of treatment when they were asking for
more pain medication. Patients would share with me their inner pain.
They would usually cry. Although many refer to crying as breaking
down, it consistently aided break throughs. The number of requests for
pain medication declined.
Then a new medical director put all patients on antabuse. I objected and
was “laid off” two weeks later. This is one of many times I paid a price
for how my beliefs put me in conflict with our mental health system.
My most traumatic experience of mental health oppression came at the
hands of my church. The director of the “Ministerial Fellowship
Committee” described its purpose as being gatekeeper for our
denomination, weeding out those not psychologically fit for the
ministry.” At 31, after nearly seven years of education and work, I was
the weed removed.
I have needed a lot of support to heal my alienation from institutions that
I judged as toxic. In particular I felt at odds with the psychiatric
pharmaceutical industrial complex. I believe that the mental health
system diverts attention away from social injustice, oppression and the
deeper causes of harm upon people. I rejected the labeling and
mistreatment of people as mentally ill. I saw it as enforcing social
structures that keep control of resources in the hands of the richest 1%.
In 93 I met David Oaks and began working at the “Clearinghouse for
Human rights in Psychiatry.” For 25 years David has believed in me
and challenged me to reach higher. He has referred to me as Minister to
In 98, I was hired to start and direct the “Crisis Alternatives Program” in
Essex Co NY. It was one of the first respite programs- funded to reduce
the amount of force and violence in the county’s mh crisis response. My
philosophy was very simple: 1- assume that each person asking for our
help was experiencing some degree of overwhelm and conflict regarding
something that had happened to them. 2- listen, provide people with
high quality empathy 3- Remember that people are the best experts on
what they value and want 4- Do not interfere with their choice of
support services. Let them figure out for themselves how they wanted
to address their conflicts. 5- believe in people’s capacity to recover.
These values have helped me in my recovering from the recent trauma to
my brain and body. The experience and tools I’ve gained in this
movement have been instrumental in my success. Now come with me
through that more recent journey.
My brother Michael had invited me to participate in the final kayak
expedition for his book. We planned to leave early Tuesday morning.
On Monday I texted him that I would arrive at his home by about 9pm.
When my housemate came home at 6, he saw my car in the driveway,
and found my cell phone inside charging. He correctly assumed I had
gone out on my bicycle and incorrectly assumed I would be back soon.
A few days later, I regained consciousness in the hospital Intensive care
unit. I woke gently as if from a night’s sleep. Looking down I saw my
badly broken body. I felt achy all over.
I didn’t remember the accident. I remembered setting out on my bike. I
knew I didn’t reach my destination. I put two and two together.
Surprisingly I felt somewhat calm. When the pain medication wore off,
I experienced dread. I was lonely and pleased when staff entered my
Something seemed strange. Was this a movie or a dream? I had the
sense of being both present and in another realm. There was silence
from me? I realized that I couldn’t speak.
I figured it was a result of the accident, and expected that it would soon
wear off. My acceptance wore off more quickly. I needed to let my
brother and others know where I was. I wanted to scream, “I’ve got
something I need to tell you!” Staff understood only that I was
Fortunately, my brother soon appeared in my room. The police have
contacted him. My relief was enormous! There were tears in both of our
eyes. The relief was short-lived. I became frustrated with my inability to
communicate and connect with him. Noise was hurting my head. I was
relieved when he left for the quiet that returned.
I started communicating with staff by using expressions, sounds and
soon some garbled words. I slept much of the time, and could tell that
my condition was improving.
My brother’s next visit went better too. He says that my first word was
Although relatively peaceful, I felt a strange disorientation. From my
room, I couldn’t see the street or the sky. I saw only another building
with a bright neon sign. I watched it become dark and light and dark
again. It was like time lapse photography. I couldn’t tell how many days
went by. I left my room only one time in ten days, a trip down
windowless hallways to an operating room. I was lost in space.
Disconnected from nature, blurry headed from my trauma and the meds,
I started seeing fantastic images. Have you started dreaming before you
fell asleep? It was something like that. I kept trying to look at these
things I was seeing. Each time I opened my eyes, the images would
disappear. I saw strange things with my eyes open too; floating
electrons, and orbs of light. Fortunately weird doesn’t faze me! I was
curious and amused by these altered states.
The noises were more troubling. Beeps, alarms and even voices hurt my
head. I was hearing doctors and nurses talking in the hall outside my
room. They seemed to be talking about me repeatedly. There were also
public service announcements and advertisement for hospital programs
being broadcast over a public address system. I wasn’t quite sure what
was real. It reminded me of a scene from Alice in Wonderland.
Again, I correctly assumed that it was a result of my accident, and would
soon be over.
A speech specialist visited me. She said that I was going to get better,
and that it would take a long time. She said that singing would help me
recover my speech. She asked if I could sing “twinkle twinkle little
star.” and “Happy Birthday.” I couldn’t believe that I could barely
remember the tune. For the next month I sung all day long.
Someone brought me a “letter board” so that I could point and spell. I
didn’t have much success. Writing on paper didn’t work much better.
The problem was that I was still thinking big words and long complex
sentences. Before I could get my thoughts out, I would forget what I
wanted to communicate.
Staff seemed to want to get in and out of the room quickly. Some times
they caused me physical pain. I couldn’t quickly find words to
The voice of childhood trauma was crying inside me: “No more! I can’t
take any more!” My actual emotional expression was cranky and
complaining. Hurting and fatigued, I feared alienating my helpers. I
knew that if I didn’t make a change, things would not go well for me.
Fortunately help was on the way. My former partner Huyen had reached
out from Texas to contact my local people in Florida. She asked the
Vegan meetup community to bring me healthy food. Joyce had attended
Nonviolent Communication (NVC) classes in my home brought me miso and other vegan meals. Her
food was manna from heaven. Her visit was an island of joy in a sea of
That night I was writhing in pain again. I was tired emotionally and
physically. “This is horrible!”, I thought. “What have I done?! I can’t
handle this!” Alone and in despair, I longed for support and imagined
there was none to be had. I felt hopelessness overtaking me.
Then one thought caused a shift in me. I remembered Joyce telling me
how Huyen had reached her through the internet to advocate and care for
me. Recalling this, I remembered that I was loved. I felt warmth, relief
and ease in my body. Although still in pain, I could be still. Sleep came
Huyen and I had been a couple for 7 years. I recent years I have seen
her Facebook posts; pictures of good times with her boyfriend Mark.
That she still cared and acted boldly was powerful.
Huyen is a physician. She was able to inform, guide and advocate for me
effectively. She has been a star player on the incredible support team
Phil flips trauma and tragedy into recovery and growth. We love you, Phil!
In the beginning I perceived myself as alone in facing terrible pain and
loss. My perception yielded to a sweeter reality. Love began pouring
in, cards, prayers and emails from far and wide. Eventually there were
calls, meals, rides, generous gifts to support my medical costs.
Love lifted my spirit. I began thinking, acting and responding more
positively and effectively. I became determined to recover. Staff
responded and treated me with warmth. Resources fell in my lap.
The support and the love I received helped me to keep on keeping on
through months of pain. With spirits lifted, I found the stamina to do
about 4 hours of therapeutic activity most days; physical therapy, weight lifting,
swimming, gentle stretching. I’ve received cranial sacral and Eye Movement Desensitization and Reprocessing (EMDR) therapies. I’ve participated in a fitness program for people with mental
and physical disabilities.
Although I have worked hard, I didn’t make my bones heal. Something
larger than me did that. We understand and call it differently; the
Universe, life, spirit, energy, nature, G*d. I thank G*d for the doctors,
nurses, physical therapists, agencies, advocates, friends and family that
have helped create miracles for me. I stand in humility and awe before
the web or life of which we are part, the Great Mystery of unfolding
existence. I send out love to all my relations, my ancestors and
generations to come. I step into this moment, alive, awake and grateful
for new opportunities.
This year, 2019, is my 43rd year working for human rights in disability. Based on sheer numbers, we are one of the largest social change movements in Earth’s history.
Let us act like it now, and help lead a world-wide revolution.
Sound crazy? Well, the odds are indeed against us. However, this is not a question of what can be done, this is a question of what must be done.
Here are three reasons I feel we must pour our souls into this endeavor, now:
1. Creative Disorder
We in the disability movement are extremely diverse. Some of us reject our diagnoses. Some of us embrace our labels. But all of us have been diagnosed as “disordered.”
When society by any definition seems paralyzed, who you gonna call?
The disability movement! The current individual who occupies the White House identifies himself as a “very stable genius.”
But we need instability right now. And not any kind of instability.
We need creative instability.
Creative Disorder! This is a modernization of a phrase that Martin Luther King used over and over for over a decade. MLK repeatedly said he was proud to be “maladjusted.”
In fact, MLK said the world was in dire need of a new organization, the “International Association for the Advancement of Creative Maladjustment” (IAACM).
2. Never Again!
Over and over and over again many of us have vowed, “Never Again!” We will never have another Holocaust.
But now scientific experts overwhelmingly warn us that the ecological crisis may wipe out a heartbreaking amount of life and civilization. Humanity keeps heading toward trigger points for positive feedback loops. Dozens of them.
Most recently, scientific studies show that the warming of the oceans may be 40% worse than originally thought. As methane is released from the floor of the ocean, for example, this can lead to more warming, which means more methane, which means more warming, etc.
We are headed toward a wall of cascading chaos. We cannot predict the future exactly, but let us glance at a worst case scenario.
I have made a very rough, unscientific estimate of just the number of human lives at stake.
The life of a species is about one million years. We humans are only through part of that cycle. Basing my estimates on the “carrying capacity” that many have estimated, along with the number of generations yet to come, etc.
Adding this all up, just focusing on human life, I get an incredibly large number.
By coincidence, this number is six million squared. In other words, for each person lost in this six million estimate, there is another six million.
This is the Holocaust Squared. That is the human cost that I estimate is at risk. Not even addressing all the animal and plant life at risk.
3. Extinction Rebellion
My hats off to you for being a leader in the coming global revolution.
For example, I have been active with the group 350.org. I am gratified to see Our Children’s Trust continues to fight for the future. There are many other groups.
There are a couple of organizations that I have only recently found out about, are very promising for a global revolution. Everything that I have seen so far is positive.
First, there is a group that started recently in London with non-violent civil disobedience that shut down several bridges, and is going international, Extinction Rebellion.
Second, today, 15 January 2019, is a kickoff date for a national Earth Strike. There are several more dates over the next few months, leading up to 27 September 2019, Earth Strike! Check it out.
Disability Leadership Needed Now!
In the comments below, I would love to hear your reactions and suggestions. I know revolution is difficult. The first question I often hear is “what kind of revolution?” But even talking about the topic is helpful.
And I feel, that no matter what the odds are, hearing that folks are positive Revolutionaries may help us maladjust to our collective trauma, creatively.
And we are all, 100%, traumatized today. All of us, 100%, are now the Creative Disabled!