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Caring Relationships: Negotiating Meaning and Maintaining Dignity ENCORE
Jan31

Caring Relationships: Negotiating Meaning and Maintaining Dignity ENCORE

In this disturbing era of Trump, we revisit our encore show on disability rights. During his campaign in November 2016, Trump mocked NY Times reporter Serge Kovaleski, who had chronic joint disease that limits his arm movements. On this edition of Making Contact, we’ll explore the dynamic and complex relationship of care receiving, giving, and disability rights. The vast majority of care recipients are exclusively receiving unpaid care from a family member, friend, or neighbor. The rest receive a combination of family care and paid assistance, or exclusively paid formal care. Whether you’re a paid home care provider, or rely on personal assistance to meet your daily needs, or a family member caring for a loved one, the nature of the working relationship depends on mutual respect and dignity. This show features a special segment by Making Contact Storytelling Fellow Alice Wong. Find out more about the fellowship here. Like this program? Please show us the love. Click here and support our non-profit journalism. Thanks! Featuring: Camille Christian, home care provider and SEIU member Brenda Jackson, home care provider and SEIU member Patty Berne, co-founder and director, Sins Invalid Kenzi Robi, president, San Francisco IHSS (In Home Supportive Services) Public Authority Governing Body Jessica Lehman, executive director, San Francisco Senior and Disability Action Rachel Stewart,  is a queer disabled woman who is passionate about disability and employment issues Alana Theriault, disability benefits counselor in Berkeley, California Ingrid Tischer, director of development, Disability Rights Education & Defense Fund (DREDF) Alta Mae Stevens, in-home caregiver Alice Wong, disabled journalist and Making Contact’s 6th Community Storytelling Fellow Credits: Host: Laura Flynn Producers: Laura Flynn, Monica Lopez, Jasmin Lopez Contributing Producers: Alice Wong, Stephanie Guyer-Stevens Executive Director: Lisa Rudman Audience Engagement Director/Web Editor: Sabine Blaizin Development Associate: Vera Tykulsker Music: Dexter Britain: The Time To Run (Finale)    Gillicuddy: Adventure, Darling Steve Combs: March Jason Shaw: Running Waters Jared C. Balogh: BRICK BY BRICK DAY BY DAY Jared C. Balogh: INCREMENTS TOWARDS SERENITY  Nheap: Crossings Cherly KaCherly: The Hungry Garden Trio Metrik: Vogelperspektive Kevin MacLeod: Faster Does It More Information: UCSF: UCSF Study Projects Need for 2.5M More Long-Term Care Workers by 2030 SEIU: Longterm Care Workers Disability Rights Education & Defense Fund Disability Visibility Project Hand in Hand: The Domestic Employers Network National Disability Leadership Alliance Senior and Disability Action Sins Invalid San Francisco In Home Supportive Services Public Authority Family Caregiver...

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Caring Relationships: Negotiating Meaning and Maintaining Dignity
Apr13

Caring Relationships: Negotiating Meaning and Maintaining Dignity

The vast majority of care recipients are exclusively receiving unpaid care from a family member, friend, or neighbor. The rest receive a combination of family care and paid assistance, or exclusively paid formal care. Whether you’re a paid home care provider, or rely on personal assistance to meet your daily needs, or a family member caring for a loved one, the nature of the working relationship depends on mutual respect and dignity. On this edition of Making Contact, which features a segment by our Community Storytelling Fellow Alice Wong, we’ll explore the dynamic and complex relationship of care receiving and giving. (Alice’s story transcript below) Featuring: Camille Christian, home care provider and SEIU member Brenda Jackson, home care provider and SEIU member Patty Berne, co-founder and director, Sins Invalid Jessica Lehman, executive director, San Francisco Senior and Disability Action Kenzi Robi, president, San Francisco IHSS (In Home Supportive Services) Public Authority Governing Body Rachel Stewart, queer disabled woman passionate about disability and employment issues Alana Theriault, disability benefits counselor in Berkeley, California Ingrid Tischer, director of development, Disability Rights Education & Defense Fund (DREDF) Alta Mae Stevens, in-home caregiver Credits Host: Laura Flynn Contributing Producers: Alice Wong and Stephanie Guyer-Stevens Photo Credits: Alice Wong, Stephanie Guyer-Stevens Music Credit: Dexter Britain: The Time To Run (Finale), Gillicuddy: Adventure, Darling, Steve Combs: March, Jason Shaw: Running Waters, Jared C. Balogh: BRICK BY BRICK DAY BY DAY, Jared C. Balogh: INCREMENTS TOWARDS SERENITY, Nheap: Crossings, Cherly KaCherly: The Hungry Garden, Trio Metrik: Vogelperspektive, Kevin MacLeod: Faster Does It Segments excerpted from full show above Choreography of Care Making Contact’s Community Storytelling Fellow, Alice Wong asks, how do people with disabilities who rely on personal assistance negotiate their relationships with the people that assist them? And how does that inform their sense of independence or interdependence with others? In this next story from the San Francisco Bay Area of California, Wong searches for answers. (see Alice’s story transcript below) A Lifetime of Caregiving: Mom and Uncle Harold Most often family members are the ones that step up and provide care when a parent or loved one needs it. According to the Family Caregiver Alliance, 78 percent of care beneficiaries receive assistance from a family member, friend, or neighbor. Alta Mae Stevens is 87 years old. From the moment she married she’s been caring for one person or another. Her daughter Stephanie Guyer-Stevens talks to her about what a lifetime of caregiving has meant to her. Resources: UCSF: UCSF Study Projects Need for 2.5M More Long-Term Care Workers by 2030 SEIU: Longterm Care Workers Disability Rights Education & Defense Fund Disability Visibility Project Hand in Hand: The Domestic Employers Network National Disability Leadership Alliance Senior and...

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Diversifying Radio with Disabled Voices
Apr04

Diversifying Radio with Disabled Voices

  Radio can be a familiar friend, source of knowledge, a marker of time and place. But as a cultural institution, what constitutes a “good voice” in radio reflects and transmits cultural norms and structures. When I started my Community Storytelling Radio Fellowship at Making Contact, I prepared by reading articles from Transom and AIR media about interviewing, storytelling, and production. I felt more intimidated as I read about advice on ‘how to do radio,’ especially since some parts were very physical (e.g., holding a microphone close to a person for a significant length of time). I wondered, “Where do disabled people like me fit in the radio community? Why don’t articles about diversity in radio ever mention people with disabilities?” Al Letson’s 2015 Transom manifesto explores the the default straight white male voice. It resonated with me immediately and I’d also add that the “default human being” on radio is able-bodied as well. Good Voices/Bad Voices By centering the default “good voice” of radio as one that is able-bodied, one that is pleasant, clear, articulate and devoid of any markers of disability, you erase disabled people, rendering them the Other (or in fancy terms the subaltern). Media and cultural studies scholar Dr. Bill Kirkpatrick wrote about the problematic nature of the invisibility of disabled voices and bodies in radio in a 2013 book chapter, “Voices Made for Print: Crip Voices”: … there is no shortage of self-evident reasons why non-disabled voices thoroughly dominate radio, not least of which is the commercial imperative: broadcasters want listeners to stay tuned, therefore they find speakers and speaking styles that audiences are willing to listen to, with voices that listeners can easily understand and find pleasing to the ear. While undoubtedly sensible as a matter of capitalist logic, however, we need to question the aesthetic reasoning at the root of this supposedly listener-centered approach to speaker selection as well as the idea that “pleasing to the ear” is somehow a sufficient explanation for the absence of disabled voices on the radio. We cannot begin to expand the range of permitted voices on radio without simultaneously undermining the ideologies of ability and disability that disqualify those voices in the first place. In the broader discussion of diversity in media, I see parts of myself included as a disabled woman of color. But more often than not disability is not included because many do not regard it as a culture. For radio, this is total bullshit. If you think about it, disabled voices are the missing instruments in this symphony that is public media. Letson stated in his Transom manifesto: Stories are told that...

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Alice Wong investigates interdependence between the disability and caregiver communities
Jun11

Alice Wong investigates interdependence between the disability and caregiver communities

I am a disabled person who uses personal assistance for almost every aspect of my activities of daily living. If I did not have paid and unpaid personal assistance (including family members), my life chances and opportunities would look drastically different. Without the usage of Medicaid-funded personal assistance programs such as IHSS (In Home Supportive Services) in California and family support, I know I would have to enter a nursing home to survive. In my conversations with people in the disability community, we joke and laugh about how we’re like CEOs when it comes to hiring, managing, and directing our services. Many of us are incredibly organized, creative, innovative, and savvy! The relationships we have with the people who provide home and personal care is the epitome of interdependence. Disabled people rely on this vital workforce for their very lives and this workforce depends on us as well. When you have a home care provider that’s reliable and respectful, it’s like knowing a unicorn—a rarity that must be treasured. When a home care provider cancels at the last minute or is over an hour late, the person can be waiting in bed unable to go to work or in desperate need to eat or use the restroom that can be agony. Trust me, I’ve been there and yes, there were times when I urinated in my pants waiting for someone to arrive. But that’s my lived reality. Clearly, this employer-employee relationship is not typical—the type of work and the level of trust involved creates a very unique dynamic that is under explored and unappreciated. People with disabilities have value and are more than ‘recipients’ or ‘clients’ who passively use services. Home care providers are more than low-wage workers that lack training and opportunities to advance—their skills and labor have worth that needs to be acknowledged in real (economic) and intangible (cultural) terms. At this time, the questions that I want to explore in my radio piece for Making Contact are: What does interdependence look like? When we talk about communities and social networks, what are the ties that bind us together? I plan to profile a person who uses IHSS and their home care provider, asking them what their relationship is like and what their vision is for a more just world where disabled people and the communities of people who provide assistance can support each other while advocating better societal conditions for all involved. I’m looking forward to working with the staff at Making Contact and learning some audio production skills to bring this story to...

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