Disability Visibility

We’re right in the middle of the summer and the coronavirus pandemic in the United States and other countries around the world continues to spread with little end in sight. What’s a better time than now to talk about bioethics? Today I’m in conversation with Dr. Joe Stramondo. Joe is an assistant professor of philosophy and associate director of the Institute for Ethics and Public Affairs at San Diego State University. His teaching and writing focus primarily on the intersection of philosophy of disability and bioethics. We spoke in late April of this year after we were both on Ethics Talk, a podcast by the AMA Journal on Ethics. Joe will describe how he got into philosophy and bioethics, what bioethics is, and some of his recent writing on the impact of the pandemic on disabled people.

[Google doc]    [PDF]

The Body Silent: The Different World of the Disabled, Robert F. Murphy (W.W.Norton, 2001)

Dialogues on Disability, a series of interviews with disabled philosopher by Shelley Tremain

“COVID-19 Triage and Disability: What NOT To Do,” March 30, 2020, Dr. Joe Stramondo, Bioethics.net

“Disability, Likelihood of Survival, and Inefficiency Amidst Pandemic,” April 6, 2020, Dr. Joe Stramondo, Bioethics.net  

“Not Who, But What Professional Bioethicists Should Prioritize When Responding to the COVID-19 Pandemic,” April 15, 2020, Dr. Joe Stramondo, Bioethics.net  

“Ethics Talk: Disability Community Perspectives on COVID-19,” April 2020, Ethics Talk podcast, AMA Journal of Ethics.

“Summary of California’s Revised Crisis Care Guidelines,” June 10, 2020, Disability Rights Education and Defense Fund.

“Resolution of Federal Civil Rights Complaint Raises the Bar in Prohibiting Medical Discrimination Against People With Disabilities During COVID-19 Pandemic,” June 26, 2020, Disability Rights Education and Defense Fund.

“Was This Ancient Taoist the First Philosopher of Disability?” John Altmann and Bryan W. Van Norden, July 8, 2020, The New York Times.

Joseph Stramondo is an assistant professor of philosophy and associate director of the Institute for Ethics and Public Affairs at San Diego State University. His teaching and writing focus primarily on the intersection of philosophy of disability and bioethics. More specifically, he has written more than twenty scholarly articles and book chapters on topics ranging from informed consent procedures to physician assisted suicide to reproductive ethics to assistive neurotechnology. His current research is devoted to developing two book manuscripts.  The first is under contract with Routledge and will address the ways in which the field of bioethics fails to address the moral salience of the social categories of gender, race, disability, and sexuality. The second will offer a systematic, if limited, defense of the moral permissibility of using reproductive technology to choose to have a disabled child. When Dr Stramondo isn’t working, you will find him spending time with his partner, two kids, and their canine companion ‘Odysseus.’

Website: http://philosophy.sdsu.edu/bios/stramondo.htm

Twitter: @PhilosopherCrip

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Alice Wong, Writer, Audio Producer, Host

Cheryl Green, Text Transcript

Lateef McLeod, Introduction

Mike Mort, Artwork

Song: “Dance Off”

Artist: Wheelchair Sports Camp

“Big waves hit land” by straget. Source: freemusicarchive.org. Licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

“VOCODER countdown” by Jack_Master. This work is licensed under the Creative Commons 0 License.

“8 Bit Beeping Computer Sounds” by sheepfilms. This work is licensed under the Creative Commons 0 License.

Today’s episode is about fashion with Stephanie Thomas. Stephanie is a Disability Fashion Styling Expert and Founder and CEO of Cur8able, a business dedicated to the art and science of dressing with disabilities. For over two decades she’s researched clothing and retail trends exclusively for people with disabilities. As an amputee herself, Stephanie believes this is more than her profession, it’s her lived experience. You’ll hear about how she got into fashion, what it’s like being a disabled entrepreneur, what it means to be a stylist, and more.

[Google doc]     [PDF]

Born a congenital amputee missing digits, Los Angeles-based Stephanie Thomas is the CEO of Cur8able, a disability fashion stylist, and editor of Cur8able.com a lifestyle blog at the intersection of fashion and disability. She curates the blog according to her disability fashion styling system. Also, Stephanie is a trusted voice actor, audio describer, and member of the SAG AFTRA actors with disabilities committee.

Stephanie holds graduate degrees in communication and fashion journalism. She is also the author and editor of Fitting In: An Anthology of the Social Implications of Fashion and Dressing with Disabilities, coming August 2020. Recently Stephanie participated in the Instagram based #sharethemicnow campaign where she was matched with Selma Blair and took over Selma’s Instagram account for a day. The premise of the #sharethemicnow was to give black women access to audience of the women they were matched with. 

New Textbook: 

Features: 

Website : www.cur8able.com

Instagram | Twitter | Facebook @cur8able

Stephanie Thomas Instagram @disabilityfashionstylist   

TEDx TALK: Stephanie Thomas: Dressing with Disabilities

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Cheryl Green, Audio Producer and Text Transcript

Alice Wong, Writer, Audio Producer, Host

Lateef McLeod, Introduction

Mike Mort, Artwork

Song: “Dance Off”

Song: “Hard Out Here for A Gimp”

Album: NO BIG DEAL

Artist: Wheelchair Sports Camp

“Onwards Upwards” by Ketsa.  (Source: freemusicarchive.org. Licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.)

“VOCODER countdown” by Jack_Master. This work is licensed under the Creative Commons 0 License.

“8 Bit Beeping Computer Sounds” by sheepfilms. This work is licensed under the Creative Commons 0 License.

For the last four years I’ve been a co-partner #CripTheVote which is an online movement encouraging the political participation of disabled people. Getting involved can mean voting, volunteering, attending a public meeting, or running for office. Learning about the issues counts too. Today’s episode features a conversation with Amanda Siebe, a disabled candidate who ran for a Congressional House seat representing District one in Oregon. Please note that Amanda and I spoke last year before the recent May primary. Unfortunately Amanda was not elected as the candidate for the Demcratic general election but you will hear about her experiences running for office, her platform, and why political change and representation is so important.

[Google doc]     [PDF]

Q&A with Amanda Siebe, October 15, 2019, #CripTheVote

Ep 37: Political Participation with Reyma McCoy McDeid and Sarah Funes

Amanda Siebe was raised in Beaverton, OR where she lived with her parents and three siblings. She attended Jesuit High School in Portland, OR and was a recipient of the President’s Award for Community Service. After high school, Amanda attended Western Oregon University (WOU) where she studied International Relations, Spanish, and Sociology, focusing on Community Organizing and Immigration. In 2009, Amanda was awarded WOU’s Saul Alinsky Community Organizing Award for her work with the Monmouth-Independence Tenants Union. Amanda volunteered for the Boy Scouts of America, the Girl Scouts, and was a volunteer EMT at Polk County Fire District No. 1. In 2012, Amanda was diagnosed with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS), following a work-related injury. Since her diagnosis, she has become a relentless advocate for chronic pain, patients, and disability rights.

Amanda has dedicated her life to improving her community and tries to teach her son, Keagan, to do the same. Since high school, she has been marching for police reform, immigrant rights, LGBTQ rights, government reform, women’s rights, and more. In 2016, she traveled to Standing Rock to stand with the Water Protectors against the Dakota Access Pipeline. In her free time, Amanda tutors and mentors local kids from ages 10 to 18, helping with homework, and teaching them to be better and demand more from our government. For her, there’s no battle too big or fight too hard to take on. Now, she’s determined to take the fight for equality and justice to Congress.

Twitter: @SiebeforORD1

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Alice Wong, Writer, Audio Producer, Host

Cheryl Green, Text Transcript

Lateef McLeod, Introduction

Mike Mort, Artwork

Song: “Dance Off”

Artist: Wheelchair Sports Camp

Music, “Wind chimes 1,” by giddster, August 21, 2018.

This work is licensed under the Creative Commons 0 License.

“VOCODER countdown” by Jack_Master. This work is licensed under the Creative Commons 0 License.

“8 Bit Beeping Computer Sounds” by sheepfilms. This work is licensed under the Creative Commons 0 License.

Today’s episode is about hate crimes with Dr. Sachin Pavithran, the Director of Policy at the Center for Persons with Disabilities at Utah State University. Sachin is also a member of the Access Board, an independent federal agency and President of the Board of AUCD (Association of University Centers on Disabilities). We talked in October last year about his personal experiences and please note there will be discussions on hate, hate crimes, racism, racial profiling, police brutality, xenophobia, and violence.

[Google doc]     [PDF]

“AUCD President, Sachin Pavithran, Discusses the Invisible Crime of Disability Hate.” (April 5, 2019). Association of University Centers on Disabilities. 

Center for Persons with Disabilities, Utah State University. 

Powell, Storee. (March 26, 2019). “The Invisible Crime of Disability Hate.” Center for Persons with Disabilities, Utah State University. 

United States Access Board 

Wong, Alice. (August 7, 2018). “American Hate: Interview with Dominick Evans.” Disability Visibility Project.

Wong, Alice. (August 7, 2018). “American Hate: Interview with Arjun Singh Sethi.” Disability Visibility Project.

Sachin Pavithran was born in India, but grew up in Dubai which is in the United Arab Emirates. Sachin came to the US at the age of 17 to start his undergraduate degree at Utah State University. His undergraduate degrees are in Business Information Systems, and another degree in Marketing. Sachin received his Masters in Vocational Rehabilitation Counseling and has a PhD in Disability Disciplines with an emphasis on disability policy. Sachin is currently the Program Director of the Utah Assistive Technology Program (UATP) and the Director of Policy for the Center for Persons with Disabilities. Sachin enjoys being an advocate for people with disabilities. He keeps up with the research and development of various assistive technologies, and is involved nationally in working with legislators in the Federal and State Government to bring change in Policies that have a direct impact on individuals with disabilities. He has reached out to the international community on Disability Policy and Infrastructure Development based on the requirements set forth by the UN CRPD. He has trained and presented in several countries such as the United Arab Emirates, India, Egypt, Syria, Philippines, Thailand, Turkey and Mexico. Sachin has over eighteen years of direct involvement in development, testing, and training for accessibility for assistive technology, extensive experience in lecturing and training others in accessible technology. Sachin provides technical assistance on accessible information technology for individuals and groups. He helps in the evaluation of products related to web accessibility and design. Sachin has had extensive experience working with the higher education community dealing with access to instructional materials and transition from K – 12 to post-secondary education and then to the workforce.  He is strongly engaged in the dialogue about cultural diversity, inclusion of people with disabilities and LGBTQ to promote equality on a state and national level.  He has served on various boards nationally such as, The Research and Development committee for the National Federation of the Blind, the Assistive Technology Act Programs national board, Association of University Centers on Disabilities national board, and Senator Hatch’s Advisory committee for disability policy. He was appointed by President Obama to the U.S. Access Board where he chairs several rule making committees in this capacity.  He was appointed to the US Commission on Civil Rights where he serves as a strong advocate for civil rights for all nationally.  Sachin aspires to be in the fore-front of establishing and implementing national and international policy that impacts people with disabilities around the world.

Twitter: @SDPavithran

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DONATE to the Disability Visibility Project®

Alice Wong, Writer, Audio Producer, Host

Cheryl Green, Text Transcript

Lateef McLeod, Introduction

Mike Mort, Artwork

Song: “Hard Out Here for A Gimp”

Album: NO BIG DEAL

Artist: Wheelchair Sports Camp

Music “Broken,” by Kevin Brown, November 16, 2019

This work is licensed under the Creative Commons 0 License.

“VOCODER countdown” by Jack_Master. This work is licensed under the Creative Commons 0 License.

“8 Bit Beeping Computer Sounds” by sheepfilms. This work is licensed under the Creative Commons 0 License.

This May is Mental Health Awareness month and today I speak with Kathy Flaherty about mental health advocacy. Kathy is the Executive Director of Connecticut Legal Rights Project a statewide non-profit agency that provides legal services to low income individuals with mental health conditions, who reside in hospitals or the community, on matters related to their treatment, recovery, and civil rights. Kathy combines her personal experience as a recipient of mental health services and her legal background to speak to issues affecting those living with mental health conditions.

*Content warnings: this interview will discuss the following topics that may be traumatic and triggering: gun violence, hospitalization, psychiatric institutions, forced medication, suicide, and suicidal ideation.

[Google doc]     [PDF]

CLRP Files Federal Complaint Against State to Ensure Patient Safety at State Operated Psychiatric Facilities Amidst Covid-19 (April 30, 2020).

CLRP Files Amended Complaint in Federal Court Case Addressing the Spread of Covid-19 in CVH and Whiting (May 7, 2020).

Flaherty, Kathleen. (March 29, 2020). I had to go to the hospital, and what I saw terrified me. Hartford Courant.

Flaherty, Kathy and Ann Pratt. (April 27, 2019). Don’t cut the safety net. Ask for more from those most able to contribute. Hartford Courant.

Flaherty, Kathleen. (March 2, 2018). How I Know That Psychiatric Hospitals Don’t Cure Gun Violence. Hartford Courant.

Flaherty, Kathleen. (January 17, 2018). Let’s talk about real issues, not Trump’s mental health. CT Mirror.

Flaherty, Kathleen. (January 13, 2015). Involuntary mental health treatment no fix. Hartford Courant.

Since 2015, Kathy Flaherty has served as Executive Director of Connecticut Legal Rights Project, Inc. (CLRP) (www.clrp.org) a statewide non-profit agency that provides legal services to low income individuals with mental health conditions, who reside in hospitals or the community, on matters related to their treatment, recovery, and civil rights.  Kathy spent 13 years as a Staff Attorney at Statewide Legal Services of CT, Inc., the centralized intake hotline for all the Connecticut legal services programs. 

Kathy combines her personal experience as a recipient of mental health services and her legal background to speak to issues affecting those living with mental health conditions.  

Kathy is currently a member of the Board of Directors of Lawyers Concerned for Lawyers-CT (the state’s lawyer assistance program) www.lclct.org ; she is a member of the Advisory Board of the Connecticut Alliance to Benefit Law Enforcement (CABLE) (www.cableweb.org.)  Kathy is the co-chair of the Keep the Promise Coalition (http://www.ctkeepthepromise.org/), a coalition of advocates (people living with mental health conditions, family members, mental health professionals and interested community members) with a vision of a state in which people with mental health conditions are able to live successfully in the community because they have access to housing and other community-based supports and services that are recovery oriented, person-driven and holistic in their approach to wellness. She is also a member of the steering committee of the Connecticut Cross Disability Lifespan Alliance (http://bit.ly/CCDLA), an alliance of people of all ages with all disabilities who pursue a unified agenda in support of building a great life in the community.

A graduate of Wellesley College and Harvard Law School, Kathy has dedicated her professional life to advocating for the rights of the underserved. 

Kathy lives in her hometown of Newington with her husband, Jim Valentino, and their rescue dog Bella.

Kathy is on Twitter @ConnConnection and is on Instagram at @reddevilsfan8332. Kathy has written op-eds published in the Hartford Courant and CT Mirror on a variety of topics, including politics, law, mental health, adoptee rights, and soccer. 

Support Disability Media and Culture

DONATE to the Disability Visibility Project®

Cheryl Green, Audio Producer and Text Transcript

Alice Wong, Writer, Audio Producer, Host

Lateef McLeod, Introduction

Mike Mort, Artwork

Song: “Dance Off”

Artist: Wheelchair Sports Camp

“Awakenings” by Ketsa. (Source: freemusicarchive.org. Licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License)

“VOCODER countdown” by Jack_Master. This work is licensed under the Creative Commons 0 License.

“8 Bit Beeping Computer Sounds” by sheepfilms. This work is licensed under the Creative Commons 0 License.