Grab that drink and hold on tight, as it has been 6 months since NPR's Joe Shapiro's series on the sexual assault epidemic of those with intellectual and developmental disabilities aired on NPR. Here is Mr. Shapiro's latest update.
Since that time, I have had a flame burning inside of me, that yearns to further elevate the awareness of the epidemic in California.
Given the above, I will reclassify myself as an Activist, best defined as a person who is "campaigning to bring about political or social change."
This is just the beginning of my Activism, change does not happen overnight; many wonderful people keep telling me that, "Rome was not built in a day..." Which makes me recite this song in my head by Walk the Moon, "Cross my heart And hope to die Taking this one step at a time I got your back if you got mine One foot in front of the other..."
Sister, I got your back. REPEAT EDD.
Here is a layout of my journey thus far in 2018....
I had the honor of meeting with Assemblyman Frazier's staff on January 4th, just a few days before the NPR story aired. Assemblyman Frazier is Chair of the Select Committee on Intellectual and Developmental Disabilities. I look forward to meeting with him in the Fall to engage in conversation on legislation that grows the awareness of the sexual assault epidemic, frameworks support for families and invests in technology for the non-verbal population with lower cognitive abilities.
In early February, a supporter of mine and I attended a lobbying course in Sacramento taught by Ray Le Bov, called Capitol Seminars. I highly recommend this course for anyone interested in how bills and regulations are curated. I found great support from Mr. Le Bov and his team.
On February 20th my mother, sisters and I attended a presentation by Tarana Burke, founder of the #metoomvmt, at Saint Mary's College of California. Her talk focused on organizing a movement and bringing about positive change, music to my ears. I also learned the term, "In my lane," referring to what work we take on and what work we delegate. My sisters and I were happy have a moment with her on stage, captured below. At that time I handed her a letter with my sister's story. Thank you Tarana and my alma mater.
On March 2nd, I was linked to Dr. Susan Abend of The Right Care Now Project. I firmly believe we need to put the power back in a loving family's hands. She is creating an "inside-out" medical record where caretakers will input information on a quarterly basis into a system that has algorithms that can predict abuse. Did you know that people with disabilities who have been abused are typically given antipsychotics to change/calm their behavior? When the truth of the matter is they are being harmed and reacting to the abuse. She and I have an on-going dialogue. If you know someone who wants to make a difference in millions of lives, let me know.
On March 20th, I had to the honor of co-presenting for the first time with Katie Hanley, Director of Oak Hills Center in Connecticut. She presented via teleconference with me live and together we offered information to pageant contestants on the sexual assault epidemic at the Ms. Wheelchair California Pageant in Pleasant Hill, courtesy of Dr. Alette Colbe-Temple, Ms.Wheelchair California 2016. #seventimes
On April 11th I met with the Executive Director of the Contra Costa County Family Justice Center. Together, we are working on a plan to support victims and families who are faced with sexual assault. I appreciate her support and know that we will make great strides as time goes on. Forever thankful.
On April 20th, I met with my mentor, Dr. Nora Baladerian and other movers and shakers in the therapy world who treat sexual assault victims with I/DD. Yes, their specialty is treating those with I/DD who are rape victims!
I learned about the disconnect between medical doctors and therapists, as medical practitioners treat the symptoms whereas therapists seek to reduce/eliminate psychological, emotional pain, that can contribute to physical pain. Psychological interventions or psychotherapy are the true answers for those suffering from their traumatic experience.
We need to demand better at the onset.
On April 23rd, I submitted my first ever Letter to the Editor with the support of Mike Burkholder of EastCountyToday.net, which was also featured in the East Bay Times, printed on April 28th. I had learned that my piece made to print paper when my mom's neighbor told me that he read my piece. The word is getting out.
On May 1st, the day after a week long vacation, I took one extra day off from work and spoke in favor of Senator Leyva's bill SB820: Secret Settlements. The bill "...will specifically ban secret settlements (non-disclosure agreements) in cases of sexual assault," In my sister's case, there was a civil settlement with a non-disclosure clause that my mother signed. If the same civil settlement was brought forth if/when this bill passes, we would not have to conceal the name of the Outside Caretaking Facility. It is a public health hazard to disclose where these incidents take place, especially when a vulnerable population is involved. We need to make sure that Outside Care Giving Facilities are being held accountable to follow-up on suspected claims of abuse at their facilities and take appropriate action. Not conceal the incident and allow the perpetrator to stay unaccountable for their actions, remaining free to abuse again. You can track the bill here.
After my first moment in front of the legislature, I had the opportunity to converse with Alicia Lewis who supported the #wesaidenoughmovement/app. Her professional contact, Adama Iwu, is on the cover of TIME as Person the Year 2017 because she exposed sexual harassment in the legislature. We took our conversation to a local coffee shop and exchanged our stories and ideas for over two hours. She is one of the most knowledgeable people I have ever met in regards to the legislature, as her career is in public affairs and managing her own firm, Lewis Public Affairs. She gave me hope that I could one day organize and educate the legislators on the epidemic and be a part of a wave of change.
On May 29th, I met with a representative from Assemblyman Grayson's office. He is chair of the Select Committee on Streamlining Services for Victims of Interpersonal Violence. I look forward to meeting with the Assemblyman this Fall and sharing my sister's story, as well as advocating for those with I/DD who are sexual assault victims. Assemblyman Grayson is a Sib, as his sister has Down syndrome, and I anticipate that he will have great concern in regards to this issue.
On June 7th, I had the honor of being e-introduced by a friend to a sexual assault survivor who is producing a documentary about her own sexual abuse titled, Groomed: The Movie. From her site, "The film addresses what "Grooming" is, how to recognize it and - ultimately - how to stop it." I look forward to meeting with her and collaborating.
On June 15th, I mailed this letter to the Hospital that treated my sister. I have yet to have a response regarding my request for a copy of the mandated report that was to be filed by them in April of 2012.
There are many, many more connections that have been made, which will be outlined in a future Blog entry.
At this time, I am focusing the next several months on sending out letters to various state agencies, like the one below.
I want to further understand the current landscape, where the gaps are in response and how we can fill them, so that there are better supports for families.
Again, my mom kept Natalie home for four years straight without any additional help during one of the most traumatic periods of our lives. Is this systemic?
If you you have read my Blog to this point, thank you for your interest. I am open to ideas thoughts and comments. Please do not hesitate to contact me.