Leslie's Advocacy Journey |
|
In January we asked Leslie Carpenter to share with us her experience of advocating for an SMI platform in Iowa during the 2020 democratic primary. We have turned her words in to a 3-part series, we hope you enjoy her story just as much as we do. |
|
On the ground here in Iowa, it is possible to not only meet all of the candidates in person, it is also possible to be able to advocate with their local campaign staff, regional staff and for some, their state staff as well. Scott & I were approached by many campaign staffers to meet with them and we seized this opportunity to advocate with them all. Soon it became clear having a specific candidate PowerPoint presentation on our phones and/or devices would help us to efficiently tell our son’s story, educate them about the history of the country’s serious mental illness treatment crisis, and provide specific, substantive policy recommendations. We actively chose to take the time to meet with all these campaign staffers for several reasons: 1) Many will be involved in politics in their future in one format or another. 2) All of them are bright, caring and compassionate young people who would benefit from learning this information, no matter what their futures would be. 3). It allowed us a “foot in the door” with their campaigns to begin getting improved access to their candidates. (We were often included in pre-event or post-event “clutches” for a select group of local elected officials, campaign volunteers and activists that got time with the candidates.)
Scott and I attended many events for all the candidates, as well as several events where most of the candidates would attend. We provided them with written policy recommendations, starting out with Dj Jaffe’s Federal and State recommendations to decriminalize the treatment of people with serious mental illnesses (with his permission, and with our contact information as well as his.) In May, staffers from Pete Buttigieg’s campaign were able to get his policy person to reach out to me and I advocated over the phone with him about the need to end the IMD exclusion, expand funding for AOT & mental health courts, increase MH professionals, and several other policies. When his policy was published sometime after that, I was pleased to see that many of our recommendations were included.
|
|
Also, in May, Senator Amy Klobuchar had published her Mental Health and Addiction Plan, which we did not have input into. However, local legislators recommended to her team that she include us on a panel in Iowa City for her announcement of her plan and we were able to do that. It was during this that Scott (seated at the left side of this picture) mentioned that we only have 64 adult & 32 children state mental health beds and that we are ranked 51st in the country by TAC. She was stunned to learn those numbers. I happened to be sitting next to her on the panel, and could see she wrote those numbers down, and circled them vigorously on her paper that she was taking notes on. She repeated these numbers often on the campaign trail.
Later, Dede Moon Ranahan had compiled a voting amongst SMI advocates of their top 5 recommendations for Presidential Candidates, as well as an extended list, and a cover letter which all the advocates listed a brief reason for their involvement. I provided this packet to all the candidates, most of them in one very productive evening at the “Wing Ding” event in Clear Lake, Iowa. Scott & I had made t-shirts with mental health messaging for this event, and to wear on TV as well during the CNN post-debate panel we participated with through the pre-caucus season. The “Wing Ding” was the first time we wore them, and I soon learned they helped me get backstage access, as the security staff clearly had law enforcement backgrounds. They were so helpful, they shared the order of the candidate appearances, so I was able to maximize my effectiveness at catching them as the arrived or left from giving their 5’ speeches.
Eventually, we were able to secure a 15-20-minute meeting with Senator Cory Booker, after his local campaign staff had advocated, on our behalf, to do so, along with a friend of ours, State Representative Amy Nielsen. We sat down with him, and a couple other people in this little “clutch” like group and talked through our candidate PowerPoint presentation. He responded with immediate empathy, compassion, and outrage when listening to our son’s story and the barriers we faced with trying to get him mental illness treatment. At the end, he immediately instructed his staff and us, that this couldn’t & shouldn’t wait until after the 2020 election, that in addition to already having his campaign policy staff work on a campaign mental health plan, he was going to put his Senate policy staff in touch with us to work on legislation. And he did.
|
|
That same week, I had suddenly developed appendicitis & had to have an appendectomy on that Monday, and we had met briefly with both Senator Kamala Harris and Senator Elizabeth Warren in clutches prior to their events, just 3 days later. We provided them both with a printed version of our talk and requested a chance to meet with them. That eventually happened, with both, but not til sometime later.
The first one was with Senator Kamala Harris after an event right here in Iowa City. She had looked at our written handout but talking her through it allowed us to share further information. And then, it seems that perhaps the typed letter that I gave her that evening, along with Dj Jaffe’s book, “Insane Consequences: How the Mental Health Industry Fails the Mentally Ill”, moved her. Within just a few days, her policy team reached out to us and we began working with them on developing a plan. At an event not long after that, the Democratic Liberty & Justice Dinner in Des Moines, she had a friend of ours, Sue Dvorsky, come find us so that she could see us. It was very nice; in that I was able to hug her in person and thank her for working on a plan. Scott captured a very nice photo of Senator Harris and me, as I was taking a selfie. It has become one of my favorite pictures.
|
|
At some point after that, we were finally also able to spend about 10 minutes with Senator Elizabeth Warren to take her very quickly through our talk and ask her to please come out with a mental health plan. She did finally agree to this, and we have been in communication with her policy team as well. Many of our recommendations did make it into her Criminal Justice Plan (ending solitary confinement, decriminalizing the treatment of people with mental illness &/or addiction), and more recently, in her plan for people with disabilities. She had expressed to me during one of our short discussions in her selfie line, that “you know, there are forces on the other sides of these issues.” I replied briefly to that at the time, but during the meeting, I addressed that head on. I said that their opinions matter, but that we were there to advocate for those who had no ability to advocate for themselves. Despite the money and power of some of those forces, with Bazelon, the ACLU, and other “disability rights groups, that a strong leader needs to step up and stand up for reasonable policy to help those who were so much more sick and untreated due to policies that were put in place during the 1960’s. She sat back, and said, “You’re right. I can see that now.” We are still in touch with her policy staff and campaign staff, as they are seeking our endorsement for Senator Warren, and we are hoping she will commit to having a plan out soon that includes substantive SMI policy. |
|
Governor Bullock had his policy team reach out to us shortly after the “Wing Ding.” His policy team was top notch and worked vigorously on a mental health plan. This happened based upon us just meeting him a few times and providing him with the written materials, and even though we didn’t get to give him our “candidate talk.” His policy people also talked with Peggy Huppert, NAMI Iowa’s Executive Director and several other experts around the country we recommended they speak with. His plan was quite comprehensive, like the Harris MH Plan. We were able to meet his lead policy person, Marc Heinrich, at a party just prior to the big Liberty & Justice Dinner. We were shocked that he was so young!! He had put together a wonderful plan with most all the elements we had advocated for. Later, we were also able to attend an event in Grinnell, Iowa to thank Governor Bullock in person, for his plan.
We haven’t been successful in getting specific plans with all the candidates, but we still feel our interactions with them have been helpful. Vice President Joe Biden feels very strongly about improving the treatment of people with mental illnesses, and he is unique in that he always asks how our son is doing. This is a picture of the first opportunity for me to talk with him, just prior to the Fourth of July parade in Independence, Iowa. A local newspaper photographer captured this image of us, and it is another favorite of mine, as it captures just how sincerely he was listening to me, despite the crowd and noise that surrounded us.
|
|
Part 3 will be out Friday
|
|
This is not a fight that can be done alone, we couldn't do it without your support. Please considering donating today. |
|
|
|
|
|
|
