My thoughts this 4th of July with a variety of pictures of my beloved son over the years showing his love of life and freedom. “Lets Free Danny with a system of Housing That Heals”
The 4th of July is a good day to talk about freedom. It is the day we Americans cherish and celebrate freedom. It should also be a day to reflect on those who are not free in America. I have a special memory that I will always hold of traveling to Washington, DC on the 4th of July to fight for the freedom of #FamiliesLikeMine. I talk about that trip and the history of that work in this post, https://www.facebook.com/teresa.pasquini.3/posts/10213321797638040. It is a good reflection to hold in my heart as I think about the intentions of today’s freedom fighters.
Today, there is a national focus on the freedom of one person, Britney Spears. The “Free Britney” campaign has created a national myth-making media machine that excludes some of the most vulnerable members of our society. My son is one of those who have been excluded. As the mother of a beloved son who has been on a “conservatorship” in California for approximately 20 years, I have been waiting to weigh in on the Britney Spears conservatorship controversy until I could analyze the information objectively. I have been too triggered and traumatized by the sideline commentary of people who don’t know what the hell they are talking about and their armchair analysis is ill-informed and dangerous. It needs to be countered by a mom who knows the truth and can defend conservatorships as a freedom-giving and life-saving tool for many families and their loved ones.
Yesterday, I took the time to read multiple articles, talk to friends who act as their family members’ conservator, and reflect on the past 20 years that my son and our family has experienced the “conservatorship continuum” in California. First, I read the New Yorker Magazine article, https://www.newyorker.com/…/britney-spears…, which is actually one of the better reported. It clearly demonstrates a disturbing picture of a young Britney who was used and abused by many predators and by a system intended to protect her. I won’t do a sideline judgment of her family’s intentions because I didn’t walk in their shoes. But I have walked in similar shoes and can comment on my own experience.
The “Free Britney” movement has nothing to do with my 20-year mission as a mother to “Free Danny.” You cannot and must not conflate and equate the two-track conservatorship laws in California. You cannot mix up the medical system, behavioral health system, guardianship, legal, and justice systems to create reform for some while others suffer needlessly. I have watched advocates and legislators do this for years. I have watched Disability Rights of California do this for years. This has made necessary reform impossible for people who are disabled by their “serious mental illness.” Now is the time for getting real reform for all. And all must mean all.
This past year, the research of Dr. Alex Barnard shined a light on how the California Conservatorship continuum lacks authority and accountability. His work has sparked conversation and understanding about the grave inequity of deciding grave disability in California. His work has also demonstrated that too often families like mine must put our loved ones and communities in danger in order to get them help before they harm themselves or others. He offers solutions in his paper, https://drive.google.com/…/1H-hKxnd…/view that has been widely shared and will influence necessary change.
Dr. Barnard has also weighed in on the Brittney Spears movement yesterday in this Sacramento Bee OpEd, “Free Britney, but CA must also reform conservatorship laws …” I agree with most of his points but don’t believe that the solutions for freeing Britney, Danny, my brother(also previously on an LPS Conservatorship) and possibly my 90-year-old mom are as straight forward as he suggests.
Those of us who may face possible capacity issues with our elderly parents don’t need extra hoops to jump through if and when we try to protect their health and safety. We must not create laws based on the worst actors in our society who take advantage of the most vulnerable. Most people do the right thing within the current Probate laws. So, I don’t know that making Probate Conservatorships as hard to access and maintain as an LPS Conservatorship is the answer. More accountability for both is definitely warranted.
This Disability Rights OpEd offers solutions similar to Dr. Barnard’s. https://time.com/…/britney-spears-conservatorship…/ along with this one, https://www.dailyjournal.com/…/363398-spears…. But, again, the laws that govern different disabilities are being conflated and equated. We cannot define freedom in the same way for all disabilities. And we have to stop implying that the same solutions are appropriate for all.
We need a system of solutions that is flexible, funded, and full. We now have a system of care that is not full or complete for those people who ARE gravely disabled and can’t get treatment before tragedy. The lack of capacity standards for the SMI population is not adequately being considered in reform conversations because we treat some disabling brain illnesses as a “mental/behavioral” issue rather than a medical illness. We must no longer cherry-pick which brain illness deserves a right to treatment and dignified housing or who is left to die on the streets with their rights on.
My Danny has been on an LPS Conservatorship for 20 years. While it did save his life and his civil rights were overprotected in many ways, there was nothing civil or right about the care, treatment, and support he received. The current laws did not protect his right to health, safety, and freedom in the appropriate “least restricted environment.”
While on conservatorship he has been forcibly locked away in faraway institutions, placed in solitary confinement, shunned, punished, and suffered in too many ways. And, while people talk about using conservatorship as a last resort, they need to know that families like mine DID use it as a last resort while being forced to make our loved ones gravely disabled and homeless. It is a cruel and usual process protected by too many and it lacks the clarity of the broken mental health system’s reality.
As the author of the Facebook blog, “Broken”, recently said, “Anyone can present as clear for the few minutes she [Britney] was speaking to the court. Without a professional who has examined her, we can’t really know how stable she really is. And just because she can make a speech to plead for her “freedom” doesn’t mean she can manage her finances. This decision is bigger than any of us can know. We only see what the media tells us.” There is that measure of sanity at the moment that looks only at imminent risk rather than the historical course of the illness. Capacity must be measured using a big picture, not a snapshot.
Appearances are misleading. 18 years ago, my Danny appeared well, both psychiatrically and physically, was taking his meds, had a room in a board and care and so his conservatorship was dismissed against our family wishes. That very night he stopped his meds. About a week later, he was on the BART tracks threatening to jump. He was 5150d (one of the 40 5150s he has endured) again and put back on an LPS. He has remained conserved for the past 18 years.
The conservatorship is what has enabled Danny to be free and stay free. He is adequately protected when the conservatorship renewals take place. He has psychiatrists who work with him to discuss his current state. He has a mom and dad who he relies on for advice. He has a public conservator who he trusts. He is represented by a public defender who is knowledgeable in conservatorship law. He has the capacity now to know that he needs support and help. However, he doesn’t understand why there is still no system of Housing That Heals to provide the medically necessary continuity of care to protect his freedom and not risk his dignity again should he go off of his conservatorship.
We talked about it just last week. He called and said, “Mom, if I go off conservatorship will you and dad help me?” I said, “Of course we will always “help” you, but we can no longer house you and be your sole caregivers. We have tried to do that off and on for over 20 years while ON an LPS Conservatorship and it didn’t work for any of us.” He said, “I understand mom. I will stay on it.” He might change his mind between now and when that decision is made by his doctors and the courts later this year. I will support him to learn about his options and I will fight for his right to live in as much freedom as is possible. I am a freedom fighter, too.
“Free Britney?” Probably. Britney has a house, food, and estate worth 60 million bucks to prevent her from becoming gravely disabled again. She deserves her freedom but should have a clear shared decision-making plan moving forward that will protect her health and wealth. I want that for her and for Danny. They both have movements fighting for their rights. Danny’s is different. It is a Moms On a Mission movement for a right to live in Housing That Heals. This movement is growing.
Housing and healing have been my mission for years. It is a mission that is ignored by many progressive Californians. The progressive movement elevates the right to shelter and the right to housing above the right to treatment. They protect one’s right to refuse treatment even if you lack the capacity to know you need it. A recent article by Heather Knight drives the issues home for the liberal /progressive California, San Francisco’s mental health care system fails two men: one killed, the other his allegedkiller.https://www.sfchronicle.com/…/San-Francisco-s-mental….
San Francisco Supervisor Mandelman is quoted and is right. There is nothing progressive, civil, or right to see here. “It’s the most dystopian version of progressive politics,” Mandelman said. “We’re all about civil liberties, but we don’t make the investments in basic services for sick people. We have this entirely negative version of liberty, about being free from things. But your freedom to live a decent life with dignity? We apparently don’t care about that at all.”
What would be progressive is if we would stop treating SMI as a “behavioral problem” instead of a brain illness. I don’t see that movement going on in California. Just more of the same. A lot of talk about peer support, which is great for many, but not all. Where is the talk about medical support in treatment facilities with compassionate providers who are given a continuum of services to support their patients upon release?. That continuum must include conservatorships as a prevention and intervention program for people like Danny who need more time to heal than his brain allowed him to understand in 24-72 hours. He understands now but it should not have taken 20 years of forced suffering to “Free Danny.”
As many know, Danny continues to improve while living in the community and he remains on an LPS Conservatorship. As it has for the past 20 years, it will be up for renewal again later this year. We as a family will consider all options in a shared decision-making process with Danny, his doctors, and his conservator. We continue to be grateful to Contra Costa Health Services and the Contra Costa Public Guardian’s office for partnering with our family over the years to help Danny live his best life. We hope that partnership will continue whatever happens next on Danny’s recovery journey.
I hope that the media, disability rights organizations, public defenders, legislators, social justice reformers, housing rights, and other mental health advocates will not forget to fight for Danny to live his life in health, safety, and freedom. And, I hope that they will join the Housing That Heals movement that seeks a system of care that will never risk anyone’s dignity by letting them be homeless, failed, and jailed. And, that they will protect the life, liberty, and the pursuit of happiness of all. And, all means all.
Happy 4th of July 2021. Let freedom ring today and every day in the USA. P.S. Thank you Kathy Day for your help with thinking this difficult subject through and for your great editing support!Teresa Pasquini
Teresa Pasquini’s magificent, tender, searing essay below speaks for so many of us. I’ve seldom read a more encompassing and truth-telling message from anyone in our sub-nation. I applaud the subtle and not-so-subtle political and cultural indictments in it as well. Godspeed, eloquent amiga!