As promised in my blog, below are some tools you can use to build Mad Pride and Disability Pride.
This is not meant to be a comprehensive directory, but to provide you with inspiration and tips. Please comment on both my Mad In America blog, and at the bottom of this resource blog, with your views, suggestions, ideas… and I will respond as I’m able.
When I broke my neck one decade ago, I drew upon the lessons I learned about empowerment from decades in the psychiatric survivor movement. I am proud of applying these skills when I needed them most. There are many other reasons to have Disability Pride: Our resilience, the amazing global disability community, the uniqueness of every human being…
MindFreedom Oregon has voted to support Mad Pride Month as July. Part of July is Creative Maladjustment Week. Martin Luther King, Jr. utilized this concept of creative maladjustment many times in his speeches. You can read about that week here: https://mindfreedom.org/mfi-taking-action/creative-maladjustment-week/
Who are the leaders of Mad Pride and Disability Pride? You, if you choose. I consider both Mad Pride and Disability Pride to apply to anyone and everyone that chooses to take leadership in a positive sense.
You can be in touch with MindFreedom Oregon in promoting Mad Pride July by emailing to: MadPrideWorld@gmail.com.
It was surprising to me how much information I could find about Mad Pride simply by searching for it in Google, Twitter, etc.
Mad Pride Switzerland
Mad Pride Switzerland official website: https://madpride.ch/ Several language options are offered on their website.
Wikipedia has reported that there have also been Mad Pride events over the last few decades in Australia, Canada, Ireland, USA, Portugal, Brazil, Madagascar, South Africa, and France.
Korea: Mad Pride Seoul in Korea usually picks 10 October, World Mental Health Day, for their parades and creative activities. Glad to see a song devoted to honoring their work: https://youtu.be/e1vEeQaCXNc
This is only meant to be a partial listing. If you know of any Mad Pride events, please share this news with others. You can find a discussion about Mad Pride on Reddit at: www.reddit.com/r/madpride. Also, you will find an email address at the end this blog to be in touch with World Mad Pride, as supported by MindFreedom Oregon.
Surviving Race: Intersection of Injustice, Disability & Human Rights–Savannah Dialogues 2022 on August 28, 2022: https://fb.me/e/1YCHJCV7K
On Twitter, it was gratifying to see the hashtag #madpride was in use. Other hashtags to consider using are: #MadPrideMonth #MentalHealth #Disability #DisabilityPride #DisabilityPrideMonth
Please leave your comments, ideas, questions, and leads below!
First, let’s talk about Mad Pride Month, which MindFreedom Oregon has launched. Why July? The month of July has many connections to the movement for mental health consumers/psychiatric survivors (C/S), here are a few:
Several decades ago, some activists in New York State were looking for a day to hold an annual protest in Albany of the mental health system. At first, they were about to choose July 4, but psychiatric survivor Myra Kovary encouraged them to choose a non-US-centered date, Bastille Day, July 14, 1981. C/S movement groups still often choose events on July 14.
When MindFreedom International looked for a week to celebrate the concept, invented by Martin Luther King, Jr., of “creative maladjustment,” they chose a week from July 7 to 14.
By happy coincidence, the birthdate of one of the most amazing psychiatric survivor activists in history, Leonard Roy Frank, is on July 15.
As we learned more about our history of the Mad Pride Movement, Wikipedia carried an interesting fact about one of the first known psychiatric survivor groups: “On 7 July 1845, Richard Paternoster, John Perceval and a number of others formed the Alleged Lunatics’ Friend Society.”
And in Oregon, of course, the infamous Oregon Country Fair is always shortly after the 4th of July. MindFreedom has held events in the heart of OCF, the Community Village, for many years. Dissident physician/psychiatric survivor Patch Adams has often spoken. In the past, the late dissident psychiatrist, Carl Hammerschlag, has also joined Patch.
So, when MindFreedom Oregon, a small affiliate of MindFreedom International, discussed having a Mad Pride Month, July was the obvious choice.
But Why is July Disability Pride Month?
Meanwhile, the disability movement was engaged in a wonderful simultaneous action: Naming July as Disability Pride Month. Because the Americans with Disabilities Act was signed into law on July 26, 1990, when the disability movement created a month to celebrate disability pride, they chose July.
As an individual with quadriplegia and several additional extreme disabilities, the concept of “disability pride” resonates with me. But at first, I can easily imagine someone thinking, “What is there to be proud about when you have a disability? Proud to lose a leg? Proud to go blind?”
Disability pride does not mean every impairment one might experience is somehow splendid. Here is the description of disability pride from the organization, AmeriDisability: “‘Disability pride’ has been defined as accepting and honoring each person’s uniqueness and seeing it as a natural and beautiful part of human diversity.”
In other words, my applying the lessons I learned from decades in the psychiatric survivor movement, to empowerment after I broke my neck one decade ago, is indeed one thing to be proud of. Resilience, the amazing global disability community, uniqueness of every human being… are a few more of the many reasons to have disability pride.
Why Mad Pride?
As a psychiatric survivor, I know that I spent many years rebelling & resisting the bizarre, ridiculous, unscientific, goofy, demeaning labels found in the Diagnostic & Statistical Manual of the American Psychiatric Association (DSM).
So, some might ask, “If you rebel against labels, then isn’t ‘mad pride’ hypocritical?”
No. The psychiatric establishment generally runs away from the use of words like “mad” and “crazy.” Whole books could be written on the topic of language, but just let me say that the only love that I would consider real is being “madly in love.”
We know that social change movements of marginalized people must build bridges to other communities of disenfranchised, such as LGBT and BIPOC. What about the disability movement, one of the biggest in the world? One of the surest connections between the psychiatric survivor movement and the disability movement, is that we human rights activists claim that every type of psychiatric oppression and goofy label, result in disability. For example, electroshock causes massive head injury and memory loss. Sounds like a disability to me.
I am ashamed that a few of my fellow psychiatric survivors have a kind of “brain bigotry” on the issue of disability, also known as ableism. These psychiatric survivors say that because their label is fictional, they cannot and should not be oppressed and forcibly treated. Hey, here’s a concept for you: Whether or not your label is true or goofy, you do not deserve oppression!
Many of us psychiatric survivors point out that many psychiatric labels are fictional, like the unicorn. But folks, even if you are missing a limb and are obviously disabled, you deserve human rights, choice, dignity, support, healthcare.
Yes, you can be a Leader in Both Mad Pride Month & Disability Pride Month!
It is totally OK if you personally choose not to celebrate Mad Pride Month or Disability Pride Month. Perhaps there should be a “Normal Shame Month”? Let me know if anyone organizes that, I’m too busy.
However, many of us do want to celebrate our differences, Mad Pride, and Disability Pride. I will not impose a psychiatric label on another person unwillingly. But please do not try to impose the label of “normal” on me. What is generally called “normal” is wrecking the planet’s environment and threatens life on Earth. What is generally called “normal” is actually, from my perspective, the worst, most dangerous altered state ever.
Mad Pride Events
Mad Pride is currently alive and well:
Bern, Switzerland held a lively and large march on 18 June 2022. The website is not in English, but you get the idea: https://madpride.ch/. You can get a flavor of these events on YouTube: https://youtu.be/G6XyX6un6MQ and https://youtu.be/THiuPTziyBg. It was very impressive to see hundreds of people participating, with signs, balloons, and whistles.
Mexico City had a Mad Pride March on 28 May 2022 (Marcha del Orgullo Loco en la Ciudad de México). The sponsors were: Redesfera Latinoamericana de la Diversidad Psicosocial & la Red Orgullo Loco México. You can email the organizers here: orgullolocomx@gmail.com
Mad Pride Seoul in Korea has held events for years. Glad to see a song devoted to honoring their work: https://youtu.be/e1vEeQaCXNc
Wikipedia has reported that there have also been Mad Pride events over the last few decades in Australia, Canada, Ireland, USA, Portugal, Brazil, Madagascar, South Africa, and France.
This is only meant to be a partial listing. If you know of any Mad Pride events, please share this news with others. You can find a discussion about Mad Pride on Reddit at: www.reddit.com/r/madpride. Also, you will find an email address at the end this blog to be in touch with World Mad Pride, as supported by MindFreedom Oregon.
On Twitter, it was gratifying to see the hashtag #madpride was in use. Other hashtags to consider using are: #MadPrideMonth #MentalHealth #DisabilityPride #DisabilityPrideMonth
Personally, as a psychiatric survivor with extreme physical disabilities, I love the idea of building bridges between Mad Pride and Disability Pride. Think of one of the key leaders in fighting the climate crisis: Greta Thunberg. When Greta was younger, she and her family wrestled with many severe mental and emotional problems, including periods of not eating, isolating herself with just a few close family members, screaming and crying for long lengths of time, etc. Greta personally accepts the diagnosis of “autism.” But Greta’s perspective is that being “on the spectrum” is her “superpower,” because her uniqueness helps her see through the web of lies that seemingly control “normal people.”
More Information on Mad Pride?
If I were to look up Mad Pride info, I would do a google search with quote marks around the phrase: “mad pride”.
Off hand, over the years, I would say Toronto has had the most Mad Pride events. I believe you can find a number of recordings on YouTube. COVID slowed them down, but they may start again.
Ireland had the absolute biggest Mad Pride events, because of the poet John McCarthy. He died a few years ago, but you can find videos on YouTube about Mad Pride Ireland events. I hope Ireland has more Mad Pride events in the future. This would surely make my friend’s spirit soar! John often talked about the “normality of madness and the madness of normality.”
I consider both Mad Pride and Disability Pride to apply to anyone and everyone that chooses to take leadership in a positive sense.
You can be in touch with MindFreedom Oregon in promoting Mad Pride July by emailing to: MadPrideWorld@gmail.com. And please leave your comments below.
Mad In America, major webzine for “rethinking psychiatry,” just published, today, June 29, 2021, my new blog: “Will US Agency New Head End Stonewalling About Money for Involuntary Outpatient Mental Health?” The US Senate confirmed President Biden’s nomination for the new leader of Substance Abuse & Mental Health Services Administration (SAMHSA), Miriam Delphin-Rittmon, PhD, an African-American psychologist.
SAMHSA has been supporting involuntary outpatient mental health, which can mean court-ordering US citizens to take powerful, controversial psych drugs in our own homes in the community. However, SAMHSA has so far refused to provide any information or evaluation about their more than $25 million in grants.
My original Mad In America blog is here, please share & comment:
An audible version of the Mad In America blog is here:
News Updates: Will SAMHSA Start to Repair Damage?
29 June 2021
A few hours before Mad In America published my blog, 29 June 2021, Lindsay Baran, a staff person for the National Council on Independent Living (NCIL), supporting the Mental Health Subcommittee, said:
SAMHSA’s refusal to provide us with the requested information is unacceptable. People are being harmed – their rights are being violated – by these grants, and SAMHSA’s lack of transparency is incredibly alarming.
A few hours AFTER Mad In America published my blog, and I contacted President Biden & SAMHSA, a staff person with SAMHSA’s FOIA office called me at home. She was very nice. She said that there had been quite a turnover in that department. She is the third staff person I am dealing with. She said she had been hired in the Spring, and would get me some materials by this week, or at the latest next week.
This staff person said SAMHSA’s FOIA office had so much material they would need to get it to me as a “rolling” download of about three big files a week. We will let you know about the results.
We will also post other updates here, as we get them. The latest will be on top.
Additional Resources About the SAMHSA Blog
As listed in the blog, July is MAD Pride Month, and you can find out more about it here:
Shortly before my blog was published by Mad In America, I created a personal blog about my experience, including the record heat here in Eugene, Oregon:
I have recently submitted my newest blog to Mad In America. The topic is about the betrayal of a federal agency regarding involuntary outpatient psychiatric drugging. This is my 45th year working for human rights of people in the mental health system.
To be very clear, let me begin by saying I very much wanted to have my Covid-19 vaccination. My wife and I felt a great relief and gratitude after we got our vax. We knew we were not only helping ourselves, but our community in general is supported by having a high vax rate.
That said, in a way I kind of can understand where the distrust of the pharmaceutical industry has come from among those who hesitate to get vaxxed. For decades, I have witnessed and documented arrogant, negative, thoughtless, harmful oppression by drug companies. In my research about mental health human rights, centuries of a kind of war by “normal” has killed and disabled so many people with psychiatric labels.
These centuries of oppression have not been very visible, but I believe that many tap into this distrust and are hesitant to be vaccinated even though it may save the lives of themselves, loved ones, and the overall community.
MAD Unite: We Need Your Voices More Than Ever!
In a few days, Mad In America will publish my blog, in which I announce that MAD Pride Month begins in a few days, July. Of course, MAD has no official definition. But I like thinking of M.A.D. as standing for “Marginalized And Disempowered!” Maybe it is hopeful thinking, but it seems like those of us considered “other” are getting a stronger and stronger voice. The psychiatric survivors, people with disabilities, BIPOC (Black, Indigenous, and People of Color), and LGBT, among others, need to amplify and build solidarity as never before.
In a few hours, here in Eugene, Oregon, Sunday, 27 June 2021, the temperature is supposed to break records. We are supposed to climb over 103 degrees F, a record for June that was just set yesterday.
Later this afternoon, the temperature climbed even more, to over 108 degrees F. This heat is not only unusual for Eugene in June, 108 is the all-time historic record for all months and years here in Eugene. We made very ugly history by reaching 111.
My great friend and activist, David Zupan, directed me to a new article that just came out a few days ago in TruthOut about climate:
The fact is, the enormous world body that has been focusing on the greenhouse effect, the Intergovernmental Panel on Climate Change (IPCC), has for years been playing a defense game. IPCC itself says it is not a strictly-speaking “scientific” organization. It is a planetary collaborative effort, and because of all the deniers who have focused on uncertainty, IPCC has focused on certainty.
However, one of the main dangers of climate chaos is triggering feedback loops that mean we can have cascading runaway amplification of extremely hazardous uncertainty. To understand this, I highly recommend the new documentary by David Attenborough, Breaking Boundaries, on Netflix.
The famous climate activist, Greta Thunberg, has been involved with several brief videos that help explain this feedback effect. You can find this info here:
For many years, during heat waves, I have pointed out that one of the most common families of psychiatric drugs that are given coercively are the neuroleptics or what is now commonly called “antipsychotics.” Because of the trend of court-ordered involuntary outpatient psychiatric drugging, and because marginalized people often do not have air conditioning, this can be a recipe for killing. Neuroleptics, like many psychiatric drugs, can make people more sensitive to high temperatures, and can even suppress the heat regulatory systems.
There are so many reasons to oppose involuntary outpatient psychiatric drugging. For example, we all know about Robin Williams, but many do not know that he had dementia caused by a disease known as Lewy Body. This was only discovered during the autopsy, according to a documentary that came out in 2020, Robin’s Wish.
Let me repeat, even someone with the resources of Robin Williams, could not be diagnosed with Lewy Body until after death. This is true for many people with this type of dementia. But it is well-established in medicine that neuroleptic drugs are contraindicated when someone has Lewy Body, the mortality rate can increase sharply.
Of course, as a survivor of involuntary neuroleptics myself, I could give you a hundred reasons why forced psychiatric drugging is a mistake. But as my blog explains, the major federal agency, Substance Abuse and Mental Health Services Administration (SAMHSA), has spent more than $25 million to support court-ordered outpatient mental health, which can often mean coerced neuroleptics.
Emergency: Our Society Needs to Hear From Marginalized People Now!
Instead of promoting forced psychiatric drugging of those considered “other,” we ought to be listening more carefully to the marginalized and disempowered.
And so I wait for Mad In America to soon publish my blog. And today, Eugene’s temperature will set records for not only the month, but for all recorded history.
In a few days, MAD Pride Month begins, July. We only have a few days, but this year I would like to focus on laying the groundwork for next year, 2022.
This is because I feel like the next two centuries after 2022, are crucial for life and humanity. The year 2222 would clearly be seven generations ahead. Will people still be there?
For humans and life to exist, we need to have a global revolution. Everyone. You. Me. We.
Dear 2222. . . Are you there?
To Get The News About My New Blog, When It Is Published…
The moment Mad In America publishes my new blog, I will get out the word to the folks on our ConstantContact free confidential email list. In order to make sure your email address is there, click here:
(To be very clear, I have three different blogs. This is my personal blog, thanks for reading it. I refer here to my blog on the website Mad In America, which as I mentioned will publish my piece soon, please get on the above list to be notified. I also have a blog over on my consulting business, Aciu Institute, LLC.)
Tomorrow, 17 February 2021, is a special day for me. Along with many people all over the world, I remember the life and times of Giordano Bruno. He was the last individual burnt at the stake by the Inquisition on 17 February 1600.
A few years ago, I had the privilege of hosting my Mom from Chicago here in Eugene, Oregon for a decade. She shared many stories. One of the most startling was the revelation that my grandfather, an immigrant from Lithuania who spent many years digging coal, admired the author and philosopher, Giordano Bruno, whose statue is in Rome, turned to face the Vatican.
This year, I have asked a wonderful friend who was raised in Italy, psychiatrist Benedetto Saraceno, MD, to translate a short remembrance of Bruno. May we all be freethinkers during these challenging times when we need to change almost everything to address the climate crisis and the way our humanity responds.
You may find both the Italian and English translations here, please forward especially to folks who speak Italian:
Today, Monday, 18 January 2021, we celebrate Rev. Martin Luther King, Jr. In two days, we in the USA will have a brand-new President, thankfully. Every morning I listen to a lot of National Public Radio (NPR). With vaccinations increasing, NPR reported that a “new normality” may finally be possible. A few minutes later, an NPR editorialist warned us, as he should, that the surge of white supremacy must not become a “new normal.”
With all this talk about “new normality,” let me tell you something that MLK wrote and spoke about that is often neglected. MLK called for the end of what we call “normality.” This is my 44th year working for human rights of people with disabilities, so I got very interested when I first heard about this incredible historic fact, and dug in for more.
One of the best examples is that MLK brought a written speech with him in August 1963 to the famous, peaceful March on Washington. At the podium, perhaps after expertly sizing up the huge crowd on the Mall in the summer heat, he never gave that longer written speech. MLK instead improvised, partly based on previous speeches, and gave impromptu what is now known as the “I Have a Dream” speech, one of the most famous in US history.
The title of the original speech that MLK did not give was “NORMALCY — NEVER AGAIN.” This typewritten speech, complete with his corrections marked with xxxxxxx, is carefully archived at the Woodruff Library at Morehouse College in Atlanta, Georgia. Here are some of his words that are most relevant to me today:
“[W]e will not be beset by the nagging knowledge that this nation owes an abject apology to Lincoln; an apology for going too slow in granting equal rights to all her citizens; an apology for not pushing hard enough in bringing to reality his hopes and dreams; an apology for invoking the evil alibi that ‘this is not the time’ for the hour of freedom to strike.”
King concluded this part of his speech with words that he would often say other places and are so well put and so important today: “For we know full well that… any time is the time to do the right thing.”
We white USA-born males owe the world an apology for the bigoted folks, mainly white male “citizens,” who are leading the bankrupt ideology of White Supremacy. The best way for us to apologize will be to take action: Black Lives Matter!
MLK frequently visited the theme of challenging normality. He even called for the creation of a “International Association for the Advancement of Creative Maladjustment.” The nonprofit human rights coalition, MindFreedom International, celebrates this vision of having a real IAACM.
Welcome President Joe, But No New Normal!
With the impending inauguration of a new president, many of us feel great relief. Wonderful. But let us learn a lesson from electing President Barack Obama, who I supported. I feel many of us progressives relaxed and let down our guard during Obama’s eight years. Obama himself encouraged progressives to be more active during his administration, and we should have listened to him. Now we know. This time, let us be on guard, prepared, engaged, and always active.
I think back about my childhood growing up in the south side of Chicago. White Supremacist racism was rampant in that area, not far from the Nazi headquarters. At the age of ten, I was only a few miles away from where Martin Luther King was struck by a rock or brick on 5 August 1966.
I later got out of Chicago, went to college and became a community organizer activist for people with mental or physical disabilities. In 1983, I moved to Eugene, Oregon.
I distinctly remember sitting in Monroe Park, not far from downtown Eugene, Oregon. I was reading material written by MLK. He recalled those days on the south side of Chicago, and I remember he remarked about the intense hate he saw in the eyes of white protestors. MLK said that racists in Mississippi could probably learn from Chicago racists! I especially remember, to paraphrase, that MLK said the hate was so great, his hope was that some young people would get out of the south side of Chicago, go to college, and get away from that environment. I was so startled, it felt like he was writing directly to me.
Perhaps MLK was writing to me, in a sense. Certainly he is speaking to all of us now, that we must never again have “normality.” No normality and no new normality! Ever! Here in our household we even have a little game that you might want to play: Whenever your hear the word “normal” such as on the radio or TV, everyone sneezes or howls. The first to do so “wins.” Let us continue to be allergic to normal or new normal! Why?
Green Disability
On Jan. 7, 2021, the day after the D.C. riots when Trump supporters violently invaded the Capitol, a Trump administration leader for mental health, Elinore McCance‐Katz, M.D., Ph.D., announced her resignation. She had been Trump’s appointed assistant secretary for mental health and substance use at the Substance Abuse and Mental Health Services Administration (SAMHSA).
Yes, we ought to all applaud her resignation in protest of Trump’s rioters. Here is an excerpt from her recent statement:
“I believe that this behavior was totally unacceptable and, in my own heart, I simply am not able to continue. I believe that we are given certain life situations where we must make the difficult decisions and we get one chance to do it the right way.”
However, for the past four years, under Dr. McCance-Katz’s supervision, SAMHSA has sadly betrayed our values in the movement for empowerment of mental health consumers and psychiatric survivors. Quietly, SAMHSA has given two major grants, in 2016 and 2020, to dozens of cities and towns around the USA to support more “court-ordered” coerced mental health care of people living in their own homes out in the community. SAMHSA uses the euphemism “Assisted Outpatient Treatment” (AOT) but really the term that legal scholars use objectively is “Involuntary Outpatient Commitment” (IOC).
We have now made a spreadsheet about grants for outpatient commitment based on SAMHSA’s own public documentation. For more than one year, I requested, unsuccessfully, that SAMHSA supply any reports about the outcome of their support. You may find our spreadsheet about SAMHSA backing of outpatient commitment, as well as a copy of my one year of email dialogue with SAMHSA here:
So, Dr. McCance-Katz, we appreciate your service and your resignation after the white supremacist violence, but please do not reapply for your position at SAMHSA! During your time at SAMHSA, millions were found to support IOC, but SAMHSA claimed poverty when it came to supporting the popular annual Alternatives Conference, which since 1985 has provided a way for hundreds and thousands of US mental health consumers and psychiatric survivors to work together. You can read about the history of Alternatives here:
SAMHSA canceled Alternatives and zeroed out funding support. Now the main annual conference is Peerpocalypse, which is sponsored by a State nonprofit here in Oregon, Mental Health & Addiction Association of Oregon. You can find more about Peerpocalypse here:
It is no surprise and coincidence that the federal agencies who are supposedly working for our mental well-being, instead use coercion to support “normality” and silence the voices of mental health consumers and psychiatric survivors.
SAMHSA is not the only federal mental health agency with a bias toward the old-fashioned medical model approach, and against an empowerment-based model. My friend, psychologist Al Galves, PhD, told me:
My hypothesis is that the National Institute on Mental Health (NIMH) spends more than 80% of its $1.7 billion each year on studying the brain — neural networks, cells, molecules, neurotransmitters, other chemicals and genetics. This is a big problem because human beings don’t use our brains or our genes to live our lives. We use our minds — our thoughts, feelings (emotions), intentions and perceptions to live our lives. The mind is not the same as the brain.
I have often pondered the way so-called “normal” is hurtling itself towards the cliff of environmental catastrophe. Now I realize that humanity as a whole, with a few exceptions such as many indigenous tribes, has a “Green Disability.” That is, it is irrefutable that generally speaking modern humans are so very out of touch with nature, that we threaten our own extinction.
There are five new brief free online videos launched from Greta Thunberg and the Dalai Lama about the role of feedback loops in amplifying the risk of climate crisis. This is why we need immediate and major action, so that seven generations ahead there will still be people and life. Please take a look at these short videos, narrated by Richard Gere:
Our consulting business, Aciu! Institute, has several events and resources for groups fighting to address “green disability.” For more information, click here:
We ought to celebrate today and every day for the liberation movements uplifted by MLK. Yes, many of us will certainly celebrate when the current White House occupant is evicted.
But please, no normality or new normality! Whenever you hear the word “normal,” please join our household and howl or sneeze. We all enjoy our game.
Also, seriously, we need to take real, effective action for a global nonviolent revolution. That is anything but “normal.”
I love you. I am David W. Oaks. And I love you if you’re quadriplegic/tetraplegic like me. If you are a psychiatric survivor like me. Or if you’re not any of those.
My friend, the late Justin Dart, Jr. was a leader in disability. He connected mental health and physical disability. He said over and over and over:
“No forced treatment ever!”
And now I think he would say:
“Black Lives Matter!”
I love you whether you’re a relative who’s a Democrat. And I love my relatives who are Republicans. Justin worked with both.
And as Joe Biden becomes President, I encourage his administration to look at federal mental health agencies. Look at the National Institute of Mental Health (NIMH). Why don’t they look more at alternatives? Like Peer Support?
And I especially would encourage Joe Biden’s administration, and everyone in the US and the world,to look at the SAMHSA. That stands for the “Substance Abuse & Mental Health Services Administration.”
I’ve done this work for 44 years, and for decades SAMHSA was an ally. They supported empowerment, recovery, alternatives.
But under the wonderful Obama, who I support, they began funding cities for involuntary outpatient commitment. This is court-ordered outpatient mental health.
Now this has been going on quietly all over the US, for decades for thousands of Americans. Your home becomes an institution. You’re court-ordered to usually take drugs, powerful drugs.
Sadly, SAMHSA began funding several dozen sites, with millions of dollars. I’ve tried to get information from them.
They refuse.
Please help. Because SAMHSA is refusing to disclose. One year ago, I filed a Freedom of Information Act request, and they still have not told me anything about these programs, in terms of evaluating. One fact is that black people tend to be in these programs more than white people.
Right now, I chair a subcommittee, for a work group in the Oregon legislature, for the Voice & Inclusion of Oregonians with Lived Experience of the Mental Health System. We are concerned about the way alternatives to police violence, like CAHOOTS here in Eugene, Oregon, need to include the peer perspective, or else they can be a gateway to outpatient commitment.
Last week, we met with a representative of CAHOOTS, and they are interested in the peer perspective. Cities all over the US and Canada are looking at CAHOOTS as a model. Our local Affiliate of MindFreedom, MindFreedom Oregon, is looking at these issues.
Wherever you are in the world, you can create an Affiliate of MindFreedom, like MindFreedom Ghana or MindFreedom Ireland, who are doing great work. Or you can use your group’s name and simply be a Sponsor of MindFreedom by endorsing the principles.
I congratulate the National Council on Independent Living. Their Mental Health Subcommittee has adopted MindFreedom’s Shield campaign. And NCIL plans to reach hundreds of Independent Living Centers about this Shield program.
Today, the climate crisis threatens vulnerable people. COVID is related to climate crisis and the way we treat our environment. For us to live seven generations in the future, we absolutely need a revolution, the sooner the better.
But we will have one.
Please look at SAMHSA.
And Lead On!
Thank you.
I love you all.
David W. Oaks is a Revolutionary Consultant with Aciu! Institute (aciu.info).
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: revolution@aciu.info.
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.)
Ačiū!
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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.