KPFA - Pushing Limits

Today’s Pushing Limits is preempted by special spring fund drive programming.

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Today’s Making Contact is preempted by the final part of C.S. Soong’s interview of Nate Powell about his graphic adaptation of James W. Loewen’s book Lies My Teacher Told Me.

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Tune in to a special hour-long Pushing Limits program this Friday at 2 pm. We will be talking to Nina G, comedian and author of Stutterer Interrupted and Bay Area Stand-Up Comedy: A Humorous History. In May 2023, her album debuted at #1 in Comedy on iTunes and Amazon. Her first video special, Nina G: Stutterer Interrupted, debuted in October 2023.

We will also talk to comedian and professional speaker Michael Beers. For 20 years, he has been an award-winning stand-up comic, disability activist and educator.

We will also be raising money for KPFA. For 75 years the station has been a home for voices that the corporate media has tried to silence. We will be giving away copies of Nina’s book Stutterer Interrupted as a thank-you for your donation to KPFA.

This episode of Pushing Limits will be hosted by Jacob Lesner-Buxton, Adrienne Lauby, Shelley Berman, and Bonnie Elliott.

Nina G’s website

Michael Beers website

The post Comics with Disabilities – Pushing Limits – May 10, 2024 appeared first on KPFA.

In recent years companies, nonprofits and government agencies have invested time and money to start DEI initiatives. These DEI trainings and other activities often focus on issues of race, gender and sexual orientation, while disability goes unaddressed.

In this program, we talk with Jennifer Chassman Browne, a DEI consultant with a disability. Jennifer talks about her work with companies and schools throughout the U.S. and speculates why disability is overlooked in many DEI programs.

We will also play audio from a short video produced by the Ford Foundation that features activists talking about the interaction between the disability community and other social justice movements.

This program is produced by Jacob Lesner-Buxton. Voiced and edited by Dominick Trevethan.

Jennifer Chassman Browne website

Ford Foundation Video – Disability Justice & Philanthropy: A Message to Funders

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Join Pushing Limits as we explore the subject of harm reduction. Advocates of these practices believe that the government should provide services to assist those to do drugs in the safest way possible. These services may include needle exchange, overdose prevention sites, and the legalization of substances. These services have been shown to be effective. However, some politicians believe that people who use drugs shouldn’t have access to services like affordable housing until they stop using drugs.

Our guests include Alli Lazarus of the San Francisco AIDS Foundation and Shannon Knox, the Executive Director of the San Francisco Drug Users Union. They discuss the state of harm reduction in the city and beyond. Additionally, Alli who lives with a disability herself, talks about some of the challenges her clients with disabilities face, specifically whether attendants can assist people engaging in the use of drugs.  Both of our guests give their takes on the issue of whether drug users should be considered disabled under the ADA as well.

This program is produced by Jacob Lesner-Buxton, and hosted and edited by Denny Daughters with production assistance from Jacob Stanton.

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Landlords still tell people with disabilities that they cannot have their service dogs or other service animals in their homes. They continue to disregard state and federal laws or — perhaps they are just plain ignorant. Michelle Uzeta joins us to talk to our resident housing expert, Eddie Ytuarte, about landlord resistance to service animals and other housing discrimination against people with disabilities.

Michelle Uzeta is the Deputy Legal Director at the Disability Rights Education and Defense Fund (DREDF). Michelle’s practice has focused on the litigation of high impact lawsuits and representation of individuals facing discrimination under the Americans with Disabilities Act, Section 504, Fair Housing Amendments Act and related state laws.

In addition to her role as a litigator, Michelle has lectured and written extensively on the legal rights of people with disabilities and has authored a number of amicus briefs on disability rights issues, including briefs before the U.S. Supreme Court. Michelle is a graduate of Stanford University and earned her Juris Doctorate and Certification in Public Interest Law from King Hall School of Law at the University of California, Davis.

This program produced & hosted by Eddie Ytuarte.

Check out the DREDF website for resources, to sign up for their newsletter and read about their work:  https://dredf.org

Photo of service dog:

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A week ago, on April 5, 61-year-old Brett Estes took his own life by moving his wheelchair in front of a BART train.  He was a quadriplegic and a member of a Quad-Squad which was active in the disability movement.  Despite the kind, long-term help of a man named John, Brett had recently struggled with finding enough attendants.

We don’t know all the reasons behind this tragedy but this death raises the issue of our current, very-inadequate attendant-care system.  Another member of our community, Brian Larsen, also took his life a few years ago when he was unable to secure adequate attendant support.  California’s IHSS, (In Home Supportive Services) system is failing severely disabled people.

Our guest, Connie Arnold sees the problems in her own life and she’s been attending state meetings, reading legal and policy regulations and generally working to improve IHSS for 35+ years. She graduated from UC Berkeley in 1984 with a degree in Social Welfare, and in 2009 from Sonoma State University (SSU) with a Master’s degree in Health Services & Public Administration Policy. With her wide range of academic and professional expertise, Ms Arnold gives specific advice on how we can each play a part in saving lives and advocate for change.  You can reach her by emailing: IHSS underscore advocate at yahoo.com.k

MORE DETAILS:  Many people with disabilities living in the community are suffering because they cannot find competent, reliable, trustworthy, and stable non-relative IHSS care provider-attendants.  Attendants who can perform paramedical services are few and far between. The State of California makes every IHSS recipient the “employer” responsible for finding their own care providers, but the recipients do not set the terms of employment for wages, health benefits, and job incentives.  Currently, IHSS wages vary from county to county and is not a living wage.

Under the IHSS program alone family members care for 72.1% of people with disabilities and they are often willing to work long hours for near minimum wages.  But when family and friends are ill, move away or age out, who takes their place?  This situation is especially obvious in the case of developmentally disabled people who live with elderly parents, but it affects people with all kinds of severe disabilities, including dementia, Lou Gehrig’s Disease (ALS), children with severe disabilities, and many others.

If you have a severe disability you may quality for extra help through a Medi-Cal or HCBA waiver.  Here’s how to apply:

Currently, individuals requiring multiple daily attendants are struggling to live independently in the community. People who rely primarily on non-relative providers are most at-risk of being forced into institutions. This, despite the U.S. Supreme Court Olmstead decision which gave people with disabilities the right to live in the least restricted environment with supportive services.  Knowing what they know about the institutions, many severely disabled individuals consider alternative actions like suicide.

Produced and hosted by Shelley Berman and Adrienne Lauby.

With thanks to the Berkeley-Disabled E-group who sparked the attendant-shortage discussion.  To subscribe to the Berkeley Disabled e-group, send an email to:  [email protected]

1973

The IHSS Program was created to enable elderly, blind and disabled individuals to live independently in the community.

1978-1981

This was a three-year project conducted by UC Berkeley, in three counties (Alameda, Contra Costa and Marin). Historical needs assessment data was used to predict recipients’ level of need for IHSS services. The project also permitted similar awards to individuals with similar needs, thus promoting equity (beginning of IHSS Assessment Uniformity).

1981

The first state time-per-task standard, known as the Domestic Services Standard, was introduced.

1992

Statute was added to allow a County Board of Supervisors to contract with a non-profit consortium, or to establish by ordinance, a public authority for the delivery of IHSS.

Federal Funding Approved for the IHSS PCSP

On November 2, 1992, a State Plan Ammendment was approved by the CMS allowing most IHSS services to be considered a Medi-Cal benefit under the new IHSS PCSP.

1993 PCSP

The PCSP was implemented April 1, 1993.

1998

Statute was amended, expanding PCSP eligibility to include medically-needy aged, blind and disabled persons (previously, only categorically-eligible persons were eligible).

Waivers for Personal Care Services – W&IC section 14132.97

required to be provided to persons meeting specified requirements.

*Please refer to the first tab titled “Acronyms” for a full description of acronyms. 45

California Department of Social Services

In-Home Supportive Services (IHSS)* History of Major Program Changes

1999

Local Assistance 2015 May Revision

On April 1, 1999, a State Plan Amendment was approved by CMS expanding PCSP eligibility to include income-ineligible recipients (i.e., recipients with a share of cost).

Employer of Record – W&IC sections 12301.6, 12303.4, 12301.3, 12301.4, 12301.8 and 12302.25

Counties were required to act as or to establish an employer of record for IHSS providers for purposes of collective bargaining. Counties that had not established a public authority for the provision of IHSS services were required to establish an advisory committee to provide recommendations on modes and delivery of IHSS services. The IHSS Registry sales tax sub-account was also eliminated from the LRF and remaining funds were transferred to the GF.

2000

This bill established the non-federal share to be paid by the state and counties for any increases in provider wages and benefits and associated taxes. Limits were also defined for state participation in increases to wages and benefits.

Non-Public Authority Counties

Effective January 1, 2001, participation in the non-federal portion of any county-implemented increase in IHSS provider wages, benefits and associated taxes was set at 65 percent state and 35 percent county. Wage increases were at county discretion and limited to no more than

Public Authority Counties

Participation in the nonfederal portion of any increases in wages, benefits and associated taxes that are negotiated by a public authority or a non-profit consortium was set at 65 percent state and 35 percent county participation. Increases in wages and benefits were subject to the following limits:

2004

The CDSS, counties and DHCS were required to perform a number of activities that would focus on improving the quality of IHSS. The key provisions included:

California Department of Social Services

In-Home Supportive Services (IHSS)* History of Major Program Changes

In FY 2009-10, CDSS approved county fraud plan funding for 45 counties to enable the development of the infrastructure necessary to support future fraud prevention operations.

The IHSS Plus Option

The IHSS Plus Option State Plan Amendment was approved on September 29, 2009, and the IHSS Plus Option became effective on October 1, 2009. The Social Security Act section 1915(i), Self-Directed Personal Assistance Services State Plan Option, was identified as the best replacement for the expiring IPW program.

Statutory Reductions and Court Injunctions

A minimum Functional Index Score threshold was created for IHSS Program services and this became the Oster I Lawsuit. The state financial participation rate for IHSS provider wages was capped at $10.10 effective July 1, 2010. This became the Dominguez v. Schwarzenegger lawsuit. The “Share of Cost Buyout” program was eliminated.

2011

A 3.6 percent reduction in hours was implemented in February 2011 and a 20 percent reduction in hours was triggered by the Budget Act in December 2011. This became the Oster II Lawsuit and part of 2013 litigation settlement.

Health Care Certificate Requirement

The IHSS recipients were required to provide a Health Care Certificate from a licensed health care professional beginning August 2011.

Changes to Provider Enrollment Background Checks

Tier 1 – Specified Child Abuse, Elder Abuse and Fraud against government health care or supportive services.

Tier 2 – Other items identified in a background check could be waived by the IHSS recipient.

2011, 2013 CFCO

The ACA of 2010 (enacted March 23, 2010) established a new State Plan Option entitled CFCO. The CFCO provides home and community based attendant services and supports and also provides increased federal funding in the form of a six percent increase in the FMAP for CFCO eligible recipients. CDSS and DHCS submitted a State Plan Amendment to CMS on December 1, 2011. The State Plan Amendment was approved August 31, 2012, with implementation retroactive to December 1, 2011.

On August 31, 2012, the federal CMS approved State Plan Amendment 11-034 for CFCO, allowing the state to obtain increased federal funding for eligible PCSP and IHSS Plus Option program recipients. The CMS approved State Plan Amendment 13-007 effective July 1, 2013, and updated eligibility language for compliance with the federal Social Security Act, section 1915(k)(1) and 42 CFR section 441.510.

2012-2013

The CMIPS II launched in pilot counties Merced and Yolo in July 2012. In September 2012

2013

The IHSS Settlement Agreement, filed March 28, 2013, received preliminary approval on

CCI – SB 1008 (Chapter 33, Statutes of 2012) and SB 1036 (Chapter 45, Statutes of 2012) changed the following sections of California law related to the IHSS program: Government Code 6531.5; Government Code Title 23; W&IC sections 10101.1, 12306, 12306.1,12306.15, 12330, 14182, 14186, 14186.35 and 14186.36

The CCI, a Medi-Cal managed care plan, changed state statute related to the IHSS program. The CCI began phasing in the eight pilot counties April 2014. The implementation process, including stakeholder meetings, is ongoing. As the IHSS program moves eligible recipients into CCI, it will remain very similar to the current program. The CCI legislation requires the

Cal Medi-Connect plan to administer IHSS in accordance with current IHSS program standards and requirements. The plan will ensure access to, provision of and payment for recipients who meet the eligibility criteria for IHSS.

Key Provisions:

The IHSS recipients will retain the responsibilities as the employer of the IHSS provider for the purposes of hiring, firing and supervising their provider, appealing any action relating to his or her application for or receipt of services and the ability to request a reassessment.

IHSS providers will continue to adhere to the IHSS provider enrollment requirements set forth in existing statute.

Care coordination teams will be established, as needed and subject to the consumer’s consent, for individual care plan development. The teams will include county IHSS social workers, consumers and their representatives, managed care health plans and may include IHSS providers and others as applicable.

CDSS will retain program administrative functions, in coordination with DHCS, including policy development, provider appeals and general exceptions, quality assurance and program integrity for the IHSS.

The CCI shifts the responsibility of collective bargaining functions (wages, benefits and other terms and conditions of employment) from county Public Authority to a Statewide Authority. This shift will occur for each county when enrollment of dual eligibles into Cal Medi-Connect is complete. This establishes a new Advisory Committee for the Statewide Authority.

Each county will be responsible for paying a MOE instead of paying a percentage of program costs. Each county’s MOE is based on program expenditures for FY 2011-12, which was adjusted to reflect savings based on the additional six percent FMAP for CFCO eligible cases, county negotiated wage increases and an annual 3.5 percent inflation factor starting

July 1, 2014. This MOE requirement applies to all 58 counties effective July 1, 2012, regardless of when the county will begin participating in the CCI.

2013

Local Assistance 2015 May Revision

The CDSS, in consultation with DHCS, shall certify any agency that is contracting with

As required by CCI, CDSS has, in consultation with stakeholders, developed voluntary provider training available January 2014. Three stakeholder workgroup meetings were held between May 29, 2013, and December 3, 2013. The workgroup meetings included at least

On March 27, 2013, the Dual Demonstration MOU was approved to integrate dual eligible beneficiaries as a component of CCI.

In an effort to ensure that data-sharing needs are identified and addressed prior to the implementation of the CCI in 2014, CDSS is holding data sharing stakeholder workgroups, the first of which took place November 30, 2012.

A stakeholder workgroup has been established to develop the universal assessment process, including a universal assessment tool for home and community-based services. The first stakeholder workgroup meeting was held September 20, 2013.

The W&IC sections 12300.7, 12306, 12306.1 and 12306.15 were amended and delinked CCI components to allow the mandatory enrollment of Medi-Cal and Medicare beneficiaries

In September 2013, the United States Department of Labor issued its Final Rule concerning domestic workers under the FLSA. The regulations were scheduled to implement January 2015 containing several significant changes impacting the IHSS program, including more clearly defining the tasks that comprise “companionship services” and limiting exemptions for companionship services and live-in domestic service employees to the individual, family, or household using the services and not third-party employers. Under the final rule, CDSS is required to pay IHSS providers overtime wages and compensate providers for wait time during medical accompaniment and commute time between multiple recipients. CDSS is evaluating implementation options for compliance with FLSA regulations. Policy changes to IHSS provider workweek limitations and provider orientation were made.

Statutes were amended and added to provide a limitation of the hours an IHSS provider can work in a week contingent upon implementation of the FLSA ruling. Providers cannot work more than 66 hours each week, less the seven percent reduction while it is in effect (61 Hours). The 66/61 hour limit is based on the statutory maximum hours (283) an IHSS recipient can receive, divided by 4.33 weeks per month. It allows payment to IHSS providers for travel time, limited to seven hours per week, when traveling directly between different recipients on the same day. The CDSS or a county may terminate a provider from the IHSS program if he/she continues to violate the overtime/travel time limitations. The legislation also established a three month grace period for IHSS provider overtime changes, in which providers will be compensated for overtime. Statute was amended to require onsite orientation, completion of the IHSS provider application prior to attendance, oral presentations and written material translated into the IHSS threshold languages in the county. Statute also permits presentations by representatives of recognized employee organizations in the county.

2014-15

In late December 2014, a federal district court ruled that a portion of the regulations exceeded the federal Department of Labor’s authority and delayed implementation of the regulations. Under state law, the state’s implementation of overtime, commute time, and wait time were also delayed pending further action by the federal court. On January 14, 2015, Judge Leon issued a ruling, vacating the Department of Labor’s revised companionship services definition that was scheduled to go into effect on January 15, 2015.

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Love is love, whether you live with a disability or not. However, those in interabled relationships face unique challenges that stem from within the relationship as well as from outside factors. These challenges can include finding a balance between needing care and being a reliable partner, as well as dealing with the financial limitations that governmental programs such as social security place on married couples.

In this program, three people with disabilities discuss their experiences with dating, intimacy, marriage and much more.

We talk to Denny Daughters, one of the Pushing Limits’ producers, about the unique challenges of being a blind man married to a sighted woman.

Genevieve Werner shares her high school (and beyond) dating experiences while living with Spinal Muscular Atrophy.  And, she details the difficulties of intimacy for those who require caregivers.

Adrion Garcia tells us how he met his fiancé and the changes they’ve stared down since he became a quadriplegic after a work accident.

This episode of Pushing Limits is produced, edited, and hosted by Dominick Trevethan.

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(Transcript below)

People with mental, emotional and cognitive disabilities face significant limitations in their daily life.  They’re considered disabled under the law.  Yet, some people with mental health conditions feel their needs are ignored by those with mobility and other physical disabilities.   And, some people with mental health issues choose not to identify as disabled due the stigma of the category.

We talk to Brian Hollander from Disability Rights California, who identifies himself as someone with mental health challenges.  Hollander gives his perspectives on why there seems to be division in the community and the steps both groups can take to work together.

Also, we talk to “Megan” a community organizer from L. A. about the journey she is on in becoming comfortable with identifying as someone with a mental health disability.

This episode of Pushing Limits is produced by Jacob Lesner-Buxton, with editing and voicing by Dominick Trevelham.

Photo Credits:

“How will we decide” by Andy Miah Natasha Vita-More @ANDfestival Salon, Flicker

Transcript:  Disability Movement Tension Spots

Dominick Trevethan (Dominick):  Good afternoon and welcome to Pushing Limits, KPFA’s program by and about people with disabilities. We air every Friday at 2:30pm.

This is Dominick Trevethan and today I’m voicing a script written by Jacob Lesner-Buxton. In recent years, there’s been a lot of conversation about an idea known as the hierarchy of disability.

This theory suggests that people of certain races genders, and disability are treated better than others both in and outside the community. People who believe this theory suggest that white men in wheelchairs have historically monopolized leadership roles in the community. The leaders have been accused of ignoring the needs of people of color and those with non-apparent disabilities who find themselves low in the pecking order.

Often, those at the bottom of the totem pole tend to have challenges with their mental health.

Jacob has talked with others who work for disability organizations feeling like they couldn’t share about their mental health issues.  Recently, he talked to a therapist with a disability who seemed to suggest that people with mental health challenges are from separate communities.

So, on today’s show, show, we will discuss how the disability community can better accommodate its members with mental health issues.

Our first guest is Brian Hollander, a person with a mental health disability who has worked as a public policy advocate in both California and New York.

Brian Hollander: (Brian) My name is Brian Hollander. I am a disability rights advocate and a public policy advocate.  I work with Disability Rights California and much of my work is focused on mental health, especially the intersection of mental health and other disabilities.  And right now what I do is supervise advocates who are protecting the civil rights of people with mental health disabilities who live in state forensic psychiatric hospitals.

Dominick:  Hollander gives us some historical context as to why it seems there’s this division between people with mental health challenges and those with other disabilities.

Hollander:  Well, you know, it’s an interesting question because it sort of has two answers. I think that my philosophy, my hope is that both of those communities of advocates should be working together especially as it relates to centers for independent living and even protection and advocacy organizations to some degree. I think mental health has sort of been like, you know, left behind. not left behind, but historically it’s been the invisible disability that nobody really talks about. Now it’s getting a lot of play, but in some cases for the long reasons.

But I definitely think that more can be done to conjoin the voices of different groups that are doing this work to try to protect civil rights. And I think that, you know, I would say there’s no such thing as disability rights as a such thing as civil rights. And I think we need to do more to unify the voices of especially people in the disability rights community, but really all people that are working for historically marginalized or historically ignored or under franchised groups of people.

Dominick:   So is anyone to blame for this division?

Brian:  Well, I certainly don’t think anybody started it like. you know, like a schoolyard fight or anything like that. However, I do think that there are a variety of reasons why these organizations and even just people, individuals in general, don’t unify around one voice. One of them is that the disability rights movement sort of was founded and historically grew up around physical disabilities.  I think that was a big part of it.

I think also… the different funding streams that provide for organizations to do this kind of work. And there’s a lot of money in programming right now, not a whole lot of money in advocacy. And so it’s hard to sort of put your money where your mouth is on the advocacy level when you’re trying to keep the lights on with the programming money. I think that’s part of it.

I think often just even within organizations. what everybody’s doing is somewhat, I hate the word ‘siloed’ because it’s such a buzzword, but for lack of a better phrase ‘siloed’ in that people kind of tend to focus on what they’re doing.

And in fact, one of the things we’re trying to do at Disability Rights California is internally just familiarize each other more with what we’re doing and who we are and what each sort of unit and department does so that everybody has a better understanding of the larger movement that we’re all working within. And [if] organizations want to start doing that and really bring sort of a single voice to advocacy, then one of the things they’re going to have to think about is what are they doing internally to make sure that happens? And, are they a model of the values that they want to convey to the public?

Dominick:  According to Hollander, if there was less division in the disability community, we would be better equipped to deal with the housing shortage.

Brian:  There is a crisis of housing in the state, and people don’t want to see people who are in shelter. And so largely what’s going on is money is being, a lot of money is being put into ways to sort of clear people from streets. streets and plazas so that people don’t have to see them in their everyday lives. But whether that’s going to translate to actual recovery and mental health and actually translate to say those people finding permanent housing is definitely up for debate, especially because you know like the Mental Health Services Act redesign doesn’t actually include money for housing. So that’s a big part of it right there.

And also, yeah, I mean, everybody’s chasing the same dollars. And when the dollars come from the people that you’re criticizing, it’s hard to really push very hard. I think that the movement overall is at a crossroads right now. There are people that are from the sort of original, starting you know, generation of our movement.

And I think our movement was originally a very grassroots, very on-the-ground movement. And I think that that has changed. And we still need a ground game. And as we focus more on kind of higher-level public policy as well as again, like I said before, we need to move forward. providing programming in order to keep the lights on at our various organizations, then what has happened is the grassroots work suffers.

And then also, I think you do have a change in leadership throughout the sort of movement going on right now as people are retiring and…

And I think that there are definitely conversations happening now about why are we talking to each other more and why are we talking to each other better?   But do I think that it’s something that got forgotten? I don’t know if it’s something that got forgotten, so much as it’s something that just sort of built up around what we were focusing on over the years, not so much that we were deliberately ignoring anything.

Dominick:  For years, parents of children with mental health challenges have played an important role in advocating for policies that dictate how this population is treated in society.  Some of these individuals believe that parents shouldn’t have input regarding these policies that affect the lives of people with mental illnesses.  Here, Hollander talks about the role of family in the movement and why it’s contentious.

Brian:  I don’t know if I see it [parental organizations] dictating where the community goes. I do think that there is a push and pull between parents who want nothing but the best for their kids. They want them protected though, and that’s the natural instinct of a parent. But the problem is that protection doesn’t always lead to recovery, and it certainly doesn’t lead to independence and the ability to sort of live a fulfilling life on your own terms.

That being said, I agree with some of these parent groups like NAMI and others that have said that the mental health system has failed people, and I understand their angst.  I understand why they’re upset that people are living on the streets when they could be getting help. I understand why a mother would not want her child to be living on the streets of LA and not have any connection to any kind of services.

But I also understand that there are civil rights implications and those have to be received. But yeah, I think there’s a role, I think there’s a balance that we need to find and I think the disability rights movement has to be, honestly, a little bit more realistic about what we’re willing to compromise on in the mental health arena.

Dominick:  In order to foster greater acceptance and inclusion of people who identify as having a mental health disability, Hollander suggests that some in the community could be slightly more flexible when it comes to their beliefs.

Brian:  There’s a very important rule in the disability rights community of ‘nothing about us without us’, but there’s also a fierce independence that runs to the point of ignoring potential solutions.  Like, for example, okay, shared decision making and ways to make that, you know, scaled within the community system and but you know some people have to be sort of given a little push in order to get into services and I think there are ways that we can give people a gentle push without really interfering with their civil rights.

Dominick:  Lastly, Brian offers more suggestions for building a disability community that embraces those. with mental illnesses.

Brian:  I think we need people with significant mental health disabilities.  I think we need people who have experienced being unsheltered, maybe even are experiencing being unsheltered, part of the conversations both at the micro level locally, right?  Literally, where are we going to put housing?  Who’s gonna come here and serve this community. Who in this community is gonna serve this community?  I think we need to be parts of those conversations.

And then, yeah, there are organizations that provide a lot of sort of supportive education around this. There’s like mental health housing first, which is Dr. Sam Tsemberis started that organization. And then there’s intentional peer support, which is really… great because it can teach people how to be partners in recovery with others within our community of you know, people who have mental health disabilities and then also intentionally being there for one another.

And I think these are alternatives to models that involve a more official like law enforcement response to mental health crisis, which I think is the big issue that we have to address is, we’re never going to be able to do that. to engage people who are paranoid if we’re responding to them with police. You know.

And there are police officers, and I just want to say, there are police officers who are great with people with mental illness. I had a brother with mental illness and there were times when police had to intervene and that just so happened that for us, we happened to have officers that had training and we’re good and knew how to handle him when he was in crisis.

But it’s clear if you look at this. statistically across the country that people are much more likely to be harmed by police, than protected from them, than protected by them if they have a mental health disorder in this country.

It starts with small steps. It starts with just participating in what’s going on in your own communities. And I think it’s important to do that and have conversations.

And I think we also then, you know, know, as a community, need to have a larger conversation about, I mean, we really don’t have a strategic plan right now as a movement. And so we need to have an inclusive conversation about that and a strategic conversation about where do we want to be in 20 years?  And how do we get there? And we really haven’t had that, and that’s something that really needs to happen.

Dominick:  This is Pushing Limits, KPFA’s program about disability. And today, we are talking about the acceptance of persons with mental health challenges in the disability community and beyond. Our next guest is someone in the process of becoming more open about her mental health identity. For this interview she asks to go by the name Megan.  Here, Megan shares a little of her journey.

Megan:  I’m a community organizer in Southern California.  And yeah, I mean, it’s been a long path for me, but I am somebody who has, you know, been in therapy for about a decade and on and off getting support, but just sort of imagining that I was like an anxious person, but I wasn’t clinically anxious or clinically depressed, and kind of sticking to the idea that I was, you know, quote, unquote, high functioning, which is not a term that I like, but that I was maybe like, low support need, or something like that.

But over time, especially over the past couple years, when I’ve both had people in my life who have noticed that my support needs around anxiety in particular are higher than I realize and also when I’ve gotten the opportunity to be in community more with disabled people and people who are advocates around mental health and mental health disability I have been able to see myself in those communities more and more.

And,  at the same time because I still am, you know, I have support needs, but they’re lower around my anxiety and mental health disabilities that I don’t want to, like, claim an identity that doesn’t belong to me, but I also want to, you know, own a part of myself and be in solidarity and recognize the political importance of seeing the disability community as like a broad coalition of a lot of different kinds of people.

Dominick:  A large reason why people choose not to go public with their experiences with mental health is because of social stigma. We were curious what role stigma plays in Megan’s decision to identify as someone with a mental health disability.

Megan:  Definitely I’ve encountered stigma both in the like ableism or perhaps internalized ableism that I’ve held in my own life and in the water that we’re all swimming in.  And so like stigma around not being able to, in my case, feeling like if I have mental health disabilities, if I embraced or looked more closely at that identity that maybe it would mean that I was out of touch with reality or quote unquote like a little crazy or you know those kind of stigma stigmas.

And, I think the other piece is not exactly a stigma but I was reading a really great book recently called Against Techno Ableism and it just reminded me there’s stigma that disability means like unable to do things.  And it’s true, different people have different limitations and that’s just life.  But that the prefix for disability, the word ‘disability’ is different than ‘unable’. Dis can mean like discern or distinguish, like it’s just a different way of doing things.  And so I think that’s the other stigma that I’ve thought about is like ‘limitations’ rather than ‘creativity’, which is what I think actually a big part of disability is about.

Dominick:  As an active member of the Jewish community, we wondered how its members handle conversations on mental health and disability.

Megan:  Just like many others spaces, there’s a lot of growth to happen, like similar to other left spaces in California, where, you know, I’m not the only one for sure, but I’m definitely someone who’s like advocating for COVID precautions and big spaces still, so that they are accessible to immunocompromised folks and others who need to stay safe in those spaces. And that’s, you know, requires some pushing, but it’s met with general acceptance from people in the community.

And so I think it’s something that people are open to, but it’s not like fully integrated into our spaces yet at all, and that it can be that accessibility and disability can be an afterthought and in terms of stigma, yeah, I think probably the spaces I’m in, it goes unspoken.

I’ll say one other thing, which is like in a Jewish community organizing space, I’m in, we’ve been moving at a really, like a really fast pace since October 7th to organize in solidarity with Palestinians and it’s life or death and it’s urgent. And so that makes sense. And there are people, like particular older people but I think also disabled people myself included who are struggling to keep up with that pace.   And so there’s not like explicit stigma there but I think there is yeah just like possibilities for both addressing the like urgency of the need to come together and the ways to you know grow the communities and grow the movements that make it possible for more and more people to participate, even if they can’t, you know, be working at that pace.

Dominick:  Thankfully, Megan was able to get the support she needs from her colleagues.

I have talked about it with my boss and some colleagues, and I think there is support. I work in a place like this. that is very like centers understanding and, and rejecting and fighting ableism, which I’m lucky to do. And yeah, so it was a supportive environment to do that and I just was offered like support and flexibility as needed.

And if I need to take time off to do that, which I have done, I’ve taken mental health time before sometimes a day or two or up to like a week of sick time before and then in other spaces where I’ve been meeting with other like members of our organization, I have also shared that more recently and I used to talk about it also in the context of like giving support to somebody in my life who has disabilities and in return like getting support for my own mental health disabilities.

And it was like, it was a little bit of a risk for me and a little scary for me to start naming it in that way because like I was saying before, I didn’t want to claim an identity that, you know, wasn’t quite, wasn’t for me. And I also, you know, it is vulnerable for me to name that I have those support needs.

But I have always been, I’m really lucky. I’ve always been met with, with a lot of support. And I think I’ll just say that for the last thing, like that’s been something that is newer over the past year or so.

Before that, I had the same brain more or less. But I wasn’t, I don’t think I, I just wasn’t really accepting that I had a mental health disability until about a year ago, where I just, my support needs became higher. I had a moment where I was like, felt kind of like my brain was in control and I was out of control and maybe I would need to be institutionalized.

That passed and I didn’t have to go to an institution for care. But yeah, I just to say like it took some extreme, what felt like extreme shifts in my own experience for me to start talking about it more openly in my life. And it took me some time to just sort of accept that sick time could be also mental health time because my brain is unwell and needing of care and attention too.

And I think that sometimes mental health time people can think like oh you’re just taking the day off to take a bath and do nothing which may be true for some people, and it may be what exactly what some people need, even if they’re not having any kind of mental health crisis. It’s still okay and good to, I think, to maintain our mental health before we get into a crisis.

So I think that’s one part of it is this idea that either people are just like, you know, messing around if they’re not really sick or in need. But yeah, I mean, again, I work at a workplace that’s very like open and accepting so I was able to name hey I’m taking a mental health week or mental health day which you know you don’t need to disclose by the way but it was helpful for me to name it in my particular workplace.

And I think a challenge for me with that is like the truth is for me to kind of re-calibrate and address my mental health and my anxiety in particular. Sometimes I need a lot more than a day or a week even that it requires some like really deep work and changes so it’s not quite enough, but it helps me like stay away from crisis zone.

So that’s my experience and I’ve had colleagues too who have needed the same and I’ve been able to you know support them in fully unplugging from the work and not feeling you know hesitant about taking the time that they need so I’m glad that I’m able to you know offer that support in return when I can.

Dominick:  Lately, Megan talks about the support she uses around her mental health as well as ways that the disability community could be more welcoming to her and others with similar identities.

Megan:  I am really lucky because I’ve been able to find a really wonderful talk therapist who has really supported me in moving through my own mental health needs and therapy is really expensive and out of reach for a lot of people and so I think and it’s not the only thing or the thing that works best for people also so and also like same with medication, it took me a really long time to decide I wanted to try something ’cause I was afraid. I thought it would change my personality or I would feel like out of control in some way.

But I think, yeah, just like, for me, something that I’ve learned recently over the past year or so is both like, when I’ve been able to really understand and appreciate that I have support needs around disability and mental health and then like access to support and not shame myself for accessing the support whether it’s medication or therapy or even just like accepting that I have limitations: that if I’m overwhelmed by anxiety in a work situation or a social situation I don’t have to be ashamed that it’s more than I can handle, or I don’t have to push through just because I think I’m supposed to at whatever cost.

So yeah I think maybe it’s just encouragement that folks are thinking about like limitations and support in a way that is really like dignified and about what is possible for us and what we want to do and then the last thing I’ll say too is yeah just again the emphasis on building cross -disability community and solidarity and questioning our biases and our internalized ableism so that we can have a united front to move against the world’s ableism.

Some of the resources that would have really helped me are like some information about language, not that like there’s one way, always one right way to talk about things, but I felt uncertain about with mental health disability, like how to even talk about it for myself and to others.

I think I would love like more history, just a little background on like, there’s so much rich history around both disability but mental health in particular, that I’m really… not so familiar with and that it has so much to do with like also race and gender and so really like understanding that history a little bit more, I think would be really a amazing welcome. And I think the last thing is like in that spirit of solidarity, I think like I would love,

I’m coming in with a specific perspective. and an experience, especially with anxiety, a little bit with depression, although not as much, and like if there’s like some testimony from people with different mental health experiences, diagnoses, not that people are defined by those, but just like what do you want people to know about you and your support needs or what, you know, your reality is like,

And just having a little bit of a window and into different people’s experience and like requests they have for the community would be really cool, too.

Dominick:  Jacob and I would like to give a huge thank you to both Brian Hollander and Megan for their time and their input on this program.  We would also like to thank our engineer, Rod Akil, as well as you for tuning in. Have a comment about today’s show? Interested in joining our mighty production team?

Email us at [email protected]. That’s all one word. [email protected].

You can also find us on Facebook as Pushinglimits Radio.

Once again, this is Dominick Trevethan voicing a script written by Jacob Lesner-Buxton.   Thank you for listening and stay tuned for Talk It Out Radio, coming up next.

♪ Keep on pushing, what I say now ♪ ♪ Keep on pushing, keep pushing ♪

The post Disability Movement Tension Spots – Pushing Limits – March 29, 2024 appeared first on KPFA.

Are you ready?  Ready for whatever comes at you?

No one can answer “yes” 100% of the time.  But we can take steps to be prepared.  And Pushing Limits is here to help.

This week, Amy SP Wilson brings a wealth of ideas about the perennial problem of strangers who are intrusive when they try to help people with disabilities.  Amy SP Wilson is the CEO and founder of the Safety Positive Foundation, a nonprofit in the business of solving the personal safety needs of the blind and visually impaired community.

And, Serra Rea explains how emergency centers teamed up with local Independent Living Centers to help keep people with disabilities safe during the recent Southern California Floods.  Serra Rae is the Disability Disaster Access & Resources Program Manager for the California Foundation for Independent Living Centers.

Listen up; Stay Safe; Be Prepared!

Interviewers and producers: Chelsea Lesner-Buxton, Bonnie Elliot and Dominick Trevethan.

More about Amy SP Wilson:

Amy SP Wilson’s commitment to personal safety has been a lifelong pursuit. From playfully wrestling with her cousins during her early years to becoming the first female wrestler at the Missouri School for the Blind in 1996, her passion for wrestling led her to the United States Association of Blind Athletes nationals in 1997, where she discovered Judo.

In 1998, Amy proudly represented her country in the World Championships for the Blind in Judo, as a member of the inaugural women’s Judo team of the USABA, all before graduating from high school. Amy’s eye condition, Stargardt’s, diagnosed at the age of 10, prevented her from continuing her martial arts journey.

Amy earned her first bachelor’s degree in psychology, only to become a survivor of domestic violence shortly after. This was not her first experience as a survivor, and she is deeply passionate about addressing the alarming rates of mental and emotional abuse within relationships involving individuals with disabilities.

Amy’s pursuit of knowledge led her to earn a second bachelor’s degree in social work.  For the past decade, Amy has been involved in instructing and developing self-defense programs specifically designed for the blind and visually impaired.  However, she found that these programs and organizations often had limited expectations for the Blind and Visually Impaired community, which did not align with her mission.

Through the establishment of the Safety Positive Foundation, Amy shares her skills and empowers her community to embrace a safety-positive lifestyle.

More about Serra Rae:  While working with the County of San Bernardino in the Public Works department, Serra Rae learned a lot about wildland fires, flooding, and earthquakes.  Preparing for the next emergency and working as a Emergency Communications Specialist in the FireCorps, Serra attended American Military Academy and obtained a bachelor degree in Disaster and Emergency Management with a focus on Terrorism and Geological Disasters. Later becoming certified as an Emergency Management Specialist with California Specialized Training Institute.

Serra Rae was introduced to the DDAR program while working at Rolling Start, an Independent Living Center member with CFILC. Working with the program at the center level gave her a good foundation to help the community open up the discussion of resources available to the community before, during and after an emergency or disaster event.

The post Be Prepared – Disability – Pushing Limits – March 22, 2024 appeared first on KPFA.