Mothers of Loved Ones with SMI are Tied Up in Nots
Last month, I had the privilege to sit in the Zoom room with yet another group of heroic women who are finding their voice sharing very personal stories about how the American mental health system has destroyed lives. Their report, issued in March 2021, is titled The Failures and Solutions Official Report. They call themselves Mother Advocates for the Seriously Mentally Ill, Los Angeles County.
One of the authors of the Mother Advocates report has also published her own memoir with the hope it will influence legislators and policy-makers
As I read their report to prepare to meet them, I was overcome with a sense of heaviness and deep sadness.
They underscore what so many have asserted: “…there is no part of the mental healthcare system which runs efficiently.” (P. 3 of Failures and Solutions report) As I have written before, I have yet to meet a person who has encountered the American mental health system – be they a consumer, a family member or one who works therein – who defends the system as anything other than broken.
I’m thinking this mom’s movement has the potential to gain momentum, just as other mom’s movements have made a difference. We’ve all heard about Mothers Against Drunk Driving and Moms Demand Action Against Gun Violence. This mom’s movement is searching for a name and a unifying strategy to link arms across state lines to find its national voice.
Mom’s I’ve Met
Every mom I have the honor to meet on this journey makes an indelible impression on my heart. In the first season of the Heart Forward podcast, I was privileged to interview the Moms on a Mission, Lauren Rettagliata and Teresa Pasquini.
I also interviewed Mimi Feldman, a mom who lived just up the street from me and wrote a book about her son Nick. Two weeks ago, she and Nick were featured on ABC news.
I invited another mom, Susan Levi, to write about her daughter in this blog in late 2019, Mommy, please don’t ever let that happen to me again – Accoglienza: lessons for America . I also have tracked down the moms of people I have encountered who have been homeless in Hollywood or elsewhere in Los Angeles.
I wrote a few months ago about another recently published book called Tomorrow Was Yesterday – subtitled as “Explosive First Person Indictments of the US Mental Health System – Mothers Across the Nation Tell it Like it Is.” It was compiled by Dede Ranahan and shares the heartbreak of 64 co-authors.
I follow one mom on Facebook; her site is called Our Broken System and sometimes I just cannot bear to read the updates on her FM (family member) because it makes me feel so sad and helpless.
I met another mom at a NAMI conference in Denver in 2016 who approached me when she heard I worked in Hollywood. She gave me a picture of her son for whom she has filed multiple Missing Persons’ Reports with the LAPD. She periodically flies out to LA and drives the streets of Hollywood and neighboring communities looking for him. Her son David was diagnosed with schizophrenia in 2008 and denies he has a mental illness and he has been chronically homeless in Los Angeles since 2015.
David Smith (2016)
David Smith (2018)
As a mother, can you imagine not flying to a strange city and driving around just praying for a glimpse of your son? I am waiting for an update on David and will update this post when I hear.
The Voices That Are Not Heard
The moms speak up (and dads too) because their adult children are not able to organize themselves into a coalition. They are not able to travel to the county board of supervisors to wait a couple hours to testify. They are not aware that there is a county board of supervisors. They are not able to log into a Zoom to provide public comment on the county’s strategic mental health plan. They may not even have a computer and, if they are living in a psychiatric facility, they are not allowed to use their cell phone. And even worse, if they are in jail, they may not understand how they arrived there and what lies ahead.
The moms speak up (and dads too) because often they are not able to even find their loved ones.
Of course there are dads who care deeply also and Crazy by Pete Earley was one of the first books I read on my journey to understand this complex issue
There are marvelous stakeholder groups, and peer-run advocacy groups who do have an effective voice, but they are not inclusive of the voices of people with serious mental illness. If I am mistaken on this front, please correct me.
The only nonprofit entity I have seen that has the potential to create space for people with serious mental illness is the clubhouse. The values of the clubhouse model contribute to inclusion, empowerment and agency (and that is why we will have a clubhouse in Hollywood. Heart Forward LA is committed to this goal.)
Tragically, when family members (or friends) try to advocate on behalf of their loved one, they are shut down or shut out. Frankly, I cannot think of another “interest group” in America who is more voiceless than our brothers and sisters struggling with serious mental illness.
How Do We Come Alongside the Moms?
On this Mothers Day, I post this to show solidarity with the moms (and dads) who have suffered so much in their battle to help their sons and daughters. So many worry about what will happen to their family members when they die and are no longer around to go to bat for them. It is not enough to set aside resources or name your child in your will. How does one guarantee safety?
I am open to brainstorming here. How do we come alongside the moms? How do we link these intrepid mom coalitions that likely exist in every state? How do we turn this into a movement? How do we forge the pathway to give voice to the voiceless?
On this Mother’s Day – let the conversation begin. And let’s set a goal that by next Mother’s Day, something significant has started.