Video of Let’s Kick ASS presents The Disability Trap: forum featuring panelists Ellyn Bloomfield, Openhouse (www.openhouse-sf.org), Andy Chu, Positive Resource Center (www.positiveresource.org), and John Fasesky, AIDS Legal Referral Panel (www.alrp.org.).
Thanks to David Cooney for shooting, editing and directing this video.
Let’s Kick ASS town hall: The Disability Trap April 16, 2014 from Let’s Kick (ASS) on Vimeo.
Let’s Kick ASS forum the Disability Trap was a huge success. Nearly 70 people showed to hear informative & insightful information about disability, retirement, and aging. Thank you to everyone who attended.
We also want to say a very big “Thank you” to our amazing panelists Ellyn Bloomfield, Openhouse (www.openhouse-sf.org), Andy Chu, Positive Resource Center (www.positiveresource.org), and John Fasesky, AIDS Legal Referral Panel (www.alrp.org.). They are knowledgeable, smart, compassionate, and committed experts on the issues that affect all of us. The issues of disability, returning to work, retirement are complicated but it is clear there are folks who can and will assist. DO NOT THINK THERE IS NO HELP. These folks and organizations are heroes for survivors so please do not please do not hesitate to call on them.
One of our panelists is profiled on the ALRP site. Read about survivor and staff attorney John Fasesky’s remarkable story here: http://www.alrp.org/spotlight/john-fasesky-esq.
While you are on the site check out their upcoming events: http://www.alrp.org/events. They have several workshop and forums.
Openhouse is an amazing Bay Area organization. They do way more than housing. They hold a wide range of events for seniors and disabled folks check them out here: http://openhouse-sf.org/event/.
On April 25 from 10:00 AM-12:00 PM ALRP and Positive Resource Center is holding a workshop: Working While Receiving SSI/SSDI. Learn more here: http://www.alrp.org/events/workshop-working-while-receiving-ssissdi-3
Coming up on Tuesday, June 24, 2014 from 8:30 AM to 4:30 PM Positive Resource Center is hold THRIVING IN 2014, a daylong institute on access to income and healthcare for people living with HIV/AIDS. The goal of the institute is to help the community to better understand the most pressing challenges confronting people living with HIV/AIDS in accessing income and healthcare in San Francisco today. In partnership with: National Senior Citizens Law Center, National Immigration Law Center, San Francisco AIDS Foundation, California Health Advocates, AIDS Legal Referral Panel, Bay Area Legal Aid, Project Inform, and Openhouse.
The year 2014 is significant for the launching of Covered California and California’s version of Medicaid expansion (MAGI Medi-cal) under the Affordable Care Act, as well as the implementation of state and federal regulations on the equal treatment of same sex marriages.
Thriving in 2014 is comprised of a series of interactive exercises and explorations to encourage participation from the attendees. The morning session will consist of two panels of specialists (the first on access to income, the second on access to healthcare) who will discuss issues raised by the attendees. The afternoon breakout sessions will consist of Community Dialogues in subject areas including, Employment, Disability, Access to Healthcare, Immigrants’ Access to Public Benefits, Housing, and HIV & Seniors. Participants will engage in small group discussions on their chosen topics. The groups will reconvene and share their findings.
For more information, please contact Vaughn Villaverde at (415) 972-0874.
ALSO
The Social Security form John talked about was the BPQI, benefits planning query. That is the first step in benefits planning is to know your current situation. This brief report has a lot of information including details about the SSI and SSDI benefits a person receives, the work history, earnings history and health coverage. You need to go to your local Social Security office and ask for your BPQI.
Let’s Kick ASS is the lead sponsor of National HIV/AIDS Long-Term Survivors Awareness Day on June 5. The 34th anniversary of the first reports of AIDS by the CDC in 1981.
This year’s theme, “We’re Still Here,” reflects the strength and resilience of the generation of survivors who lived through the darkest decades of the AIDS epidemic—the 1980s and 1990s. The We’re Still Here campaign continues the work of Let’s Kick ASS by focusing on the lives of long-tem survivors. By optimizing self-empowerment, increasing visibility, and ending stigma, NHALTSAD puts long-term survivors on the AIDS agenda. Our goal is to empower survivors to find meaning and purpose amidst the rubble of lives so incredibly impacted by AIDS.
Help us spread the word about National HIV/AIDS Long-Term Survivors Awareness Day June 5 https://www.thunderclap.it/projects/8932-long-term-survivors-day-jun-5?locale=en
In San Francsico in June 5, 2014 we are hosting the first AIDS Survivors Summit. Bringing together Bay Area organizations and individuals to begin optimizing the lives of survivors.
Learn more at AIDS Survivors Summit San Francisco 2014 — AIDSSurvivorsSummit.org
LOOKING BACK
Let’s Kick ASS has grown tremendously since our first town hall THE DEFINITION OF BRAVE. We thought it would be good to repost the video from that town hall. It is a about two hours but well worth it.
LetsKickAss.org presents Definition of Brave Town Hall for Long-Term Survivors from Let’s Kick (ASS) on Vimeo.
JOIN UCSF HELEN DILLER FAMILY COMPREHENSIVE CANCER CENTER AND THE HPV AND ANAL CANCER FOUNDATION FOR AN EDUCATIONAL FORUM ON
Living and Thriving After Treatment for Anal Cancer Addressing Long-Term Treatment Side Effects
Date: Tuesday, May 13, 2014
Time: 6:30pm-8:30 PM
Location: 2340 Sutter Street, UCSF Mount Zion Campus
Lurie Conference Room (1st Floor)
Please RSVP to (646) 593-7739 or info@analcancerfoundation.org
A panel of experts and patients will discuss side effects often experienced by individuals treated for anal cancer. Panelists will address the short and long-term quality of life effects of chemotherapy and radiation and management of these side effects. Speakers include:
Joel Palefsky, MD Anal Neoplasia Clinic UCSF
President, International Anal Neoplasia Society
Katherine Van Loon, MD Medical Oncologist, UCSF
Allison Palandrani, DPT Pelvic Health and Rehabilitation Center
Justine Almada Executive Director, HPV and Anal Cancer Foundation
Albert Chang, MD Radiation Oncologist, UCSF
Michael Berry, MD Anal Neoplasia Clinic, UCSF
Lurie Conference Room (1st Floor)
Co-sponsored by the UCSF Alliance Health Project, Project Inform, Shanti
What would it mean to optimize your life? That is the question we want to ask you.
LGBT seniors share the challenges of being gay and grey this week on CBC Radio’s On The Coast:
Many lesbian, gay, bisexual, and transgender seniors were part of a generation of trailblazers who changed laws and the way society treats LGBT people.
Now, they’re embarking on the next stage of life — old age — and finding that it’s got challenges of its own.
http://www.cbc.ca/news/canada/british-columbia/lgbt-seniors-still-face-stigma-1.2567105
Also in the same series:
http://www.cbc.ca/onthecoast/2014/03/13/gay-and-grey-hiv-patients-beat-the-odds/
Joaquin Palomino wrote a wonderful piece in the San Francisco Bay Guardian.
Here’s an excerpt:
Like Anderson, many AIDS survivors suffer emotional ailments akin to post-traumatic stress disorder or survivor’s guilt. Walt Odets, a Berkeley-based psychologist who has worked with hundreds of gay men who lived through the AIDS epidemic, is convinced that a mental health crisis is unfolding among long-term HIV survivors.
“There’s an inability to live with vitality, to live with richness, to get up in the morning and feel like you have a future, if only for the day,” he told us. “We’re losing a lot of vital lives over this.”
Anderson believes that many AIDS survivors have a definable psychological syndrome. Last January he decided to give it a name: AIDS Survivor Syndrome, or ASS for short (the acronym was intentional). He and two friends, Michael Siever and Matt Sharp, have since formed the group Let’s Kick ASS.
http://www.sfbg.com/2014/03/04/staying-alive?page=0,0
Aljazeera America recently covered ASS. Read it here:
Many of the survivors at the Let’s Kick ASS event, it seems, made a kind of existential decision to fight for their lives through the epidemic. The AIDS epidemic also had an impact apart from the damage it caused. Though it meant death and suffering, it also allowed those enduring its effects to band together — to challenge their doctors and health policymakers on the kind of health care, or lack thereof, they were receiving.
http://america.aljazeera.com/articles/2014/2/21/living-with-aidssurvivorssyndrome.html
After six months Let’s Kick ASS wants to know how we are doing. If you have ever attended one of our events? Please take a moment to fill out our survey. You can enter our raffle to win a $100 VISA gift card for completing the survey!
Let’s Kick ASS is about YOU. And we want to know if we are serving you. AND THANK YOU!
Create your free online surveys with SurveyMonkey , the world’s leading questionnaire tool.
Join us on March 19 for a groundbreaking interactive workshop about THE DISABILITY TRAP. We are bring in attorney John Fasesky from the ALRP to answer your questions about the transition from disability to retirement, because some of our group at in there sixties. Not know what is going to happen to your income when you go from disabled to retired is causing a lot of anxiety.
Some of our cohort who have been on disability are wondering if they can work part time or return to full-time work and it it is worth it. What are the implications.
What about YOUR future? Bring your questions to this timely town hall on April 16, 2014 at the SF LGBT Center, 1800 Market St starting at 7 PM.
ALSO
Please read the new interview with Let’s Kick ASS’ Matt Sharp and Tez Anderson just published on BETA treatment news.
In this frank conversation—the first in a new BETA column for long-term survivors—Anderson and Sharp share their own experiences with AIDS survivor syndrome, tell why they have a bone to pick with champions of an “AIDS-free generation,” and share how kicking ASS is helping kick-start a new chapter in AIDS history.
http://betablog.org/dreaming-new-future-conversation-long-term-survivors/
We are excited that a respected news outlet is shining a spotlight on the reality of ASS. Please read this;
http://america.aljazeera.com/articles/2014/2/21/living-with-aidssurvivorssyndrome.html
Huge advances in modern medicine have turned HIV from a condition that could seem like a death sentence to one that can be largely controlled by a hefty regime of medicines and careful treatment. But now many of those who lived through the worst years of the AIDS epidemic say the physical disease itself was not the only thing that caused harm. So too did the mental anguish left behind with those who watched their friends, lovers and family members die against a backdrop of a society that was often slow to care.
Does this sound like you? Please talk to your doctor about AIDS Survivor Syndrome.
Honoring Our Experience 2 is coming up this weekend. The first one was amazing. Check out the details here. There is still space available and lack of money is not an issue.
Check it out: http://letskickass.org/event/honoring-our-experience-long-term-survivors-weekend/
From the earliest days of the AIDS epidemic Rep. Henry Waxman has been a true hero and advocate for people with with HIV and AIDS. He has announced his retirement and he will be missed.
Here’s how much cared:
Waxman himself became nearly a board-certified specialist in immunology. The scientists often briefed him directly. He chaired hearings on incidence and prevalence, antibody tests, immune cells and anti-viral drugs. He met with people living with AIDS, even as others were calling for quarantine and wearing rubber gloves.
Read the entire Politico piece here:
And send him a thank you email: https://waxman.house.gov/contact-me/email-me
Are you a long-term survivor looking for a project? Are you an experienced website developer? A social media/new media maven? An experience public relations/press person? Do you have any experience organizing an awareness day of any kind? Are you naturally organized? If so we need you YOU!
We have a host of issues and concerns that are not being addressed. We are not on the AIDS service organizations agendas, and LGBT rights groups have long-since forgotten AIDS is a gay issue. We want to change that by empowering long-term survivors. Long-term survivors are the elders of the AIDS epidemic and yet we are not given the attention elders deserve.
