Picture of a small wooden table with two black chairs, one on the left and one on the right. At the center of the table is a small lamp and two swinging arms holding microphones for recording.

DVP Day at StoryCorps Chicago: 4/11, 5/7

Spring has sprung and Disability Visibility Project is humbled and astounded by the response of people with disabilities with our call to record disability history one story at a time.

We are delighted that the great people at StoryCorps in Chicago (located at the Chicago Cultural Center) will reserve two days this April and May for members of the Chicagoland disability community.

Disability Visibility Project Day at StoryCorps Chicago will take place on:

Saturday, April 11:           10 am-4 pm

Thursday, May 7:             1 pm-7 pm

Each day will have six appointments available. Please email Alice Wong, if you are interested and she will send you a reservation link for these appointments only: alicat155@gmail.com

First come, first serve. Availability not guaranteed. You are also welcome to make a general reservation if those dates don’t work for you (see link below).

The Disability Visibility Project is a yearlong grassroots campaign to document the stories of people with disabilities in celebration of the upcoming 25th anniversary of the Americans with Disabilities Act (ADA) in 2015.

In partnership with StoryCorps, the national oral history organization, Disability Visibility Project encourages people to record and archive their unique and powerful stories at StoryCorps’ recording studios in Atlanta, Chicago, San Francisco and in StoryCorps’ mobile recording booth that travels from city to city throughout the United States.

A special thank you to our media partner, ADA 25 Chicago, an initiative that will be planning various events in Chicago commemorating the 25th Anniversary of the Americans with Disabilities Act. They will be helping us with outreach to the Chicago-area disability community.

Helpful links

Reservations: https://storycorps.org/reservations/

What-to-Expect: http://storycorps.org/what-to-expect/

Frequently Asked Questions: http://storycorps.org/about/faqs/

For more information (location, hours) about StoryCorps Chicago: http://storycorps.org/chicago/

For general questions and about accessibility or alternate formats: http://storycorps.org/contact/

 

Image with a dark background, suggesting night time with several votive candles lit in a vigil or ceremony of some kind.

Bay Area Day of Mourning: Program Information and List of Names

Bay Area Day of Mourning

Mourn for the Dead. Fight like Hell for the Living!

On Sunday, March 1, 2015, the Bay Area disability community gathered at the Ed Roberts Campus to remember and mourn the deaths of disabled people at the hands of their parents, caregivers or care providers or by law enforcement and other authorities. The event this year was co-organized by Brent White and Corbett Joan OToole.

The Day of Mourning is in its fifth year with similar local events taking place in cities across the US and internationally.

Below is the program, what you can do after the Day of Mourning, and the list of names recited at the event. This list for 2015 has 224 names of disabled people who were murdered since 2000. The list is created from three communities: the ASAN list, a list of people killed by authority figures, and a list of disabled trans and queer folks killed. This list is incomplete because many murders of disabled are never reported in the media. Nearly all media reports sympathize with the murderer and not the disabled victim.

PROGRAM

Emcee: Nina G.

Opening Remarks: Corbett OToole

Corbett’s speech: http://disabilityvisibilityproject.com/2015/02/28/bay-area-day-of-mourning-corbett-otoole/

Speaker: Ella Callow (Through the Looking Glass)

Short reading of names by Bella

Speakers: Aracelia Aguilar and Leala Holcomb (Deaf Hope)

Speaker: La Mesha Irizarry (Idriss Stelley Foundation)

La Mesha’s speech: http://disabilityvisibilityproject.com/2015/02/28/bay-area-day-of-mourning-lamesha/

Speaker: Mark Romoser (Silicon Valley Independent Living Center)

Short reading of names by Fiona Hinze

Speaker: Alice Wong (Disability Visibility Project)

Alice’s speech: http://disabilityvisibilityproject.com/2015/02/28/bay-area-day-of-mourning-alice-wong/

Speaker: Leroy Moore (Krip Hop Nation)

Leroy’s speech: http://disabilityvisibilityproject.com/2015/02/28/bay-area-day-of-mourning-leroymoore/

Reading of names (3 readers) by Maddy Ruvolo and 2 others

Music by singer Alillia Johnson

Socializing and Refreshments

SPONSORS:

* Independent Living Resource Center San Francisco

* Ala Costa Centers

* DREDF [Disability Rights Education & Defense Fund]

* ASAN [Autistic Self Advocacy Network]

THANKS:

* Independent Living Resource Center San Francisco for the donation of the American Sign Language Interpreters

* Kathryn Hedges of Splendid Colors for the “Mourn for the Dead but Fight Like Hell for the Living” pendants

* Tara Ayres for the snacks

* All the volunteers

WHAT YOU CAN DO

  • Raise awareness by being proactive and believing survivors of abuse, ask what they want you to do to help, and then support them.
  • Push for improved documentation (data collection, statistics at the local, state and federal level) of violence toward people w/ disabilities by law enforcement including deaths, beatings and harassment.
  • Advocate for a centralized database of children and adults with disabilities killed, tortured or neglected by their adult caregivers/parents/care providers.
  • Join a task force creating a “Know your Disabled Rights” workshop.
  • If you are on Facebook, join the Healing Circle for the Soul, which is a Bay Area support group for people who have lost a Loved One to violent crime.
  • Learn more about this issue of the denial of family and removal of children through history, whether we are talking about the Gypsy Laws in medieval Europe, the mass removal of American Indian/Alaska Native children to boarding schools in the 20th century, or the issue of disability and denial of parenting today.
  • Sign up to urge disability community agencies to push for changes to the law and policy in California. There is a signup sheet for those who are interested in this project.

ADDITIONAL STATEMENTS

On Our Backs, We Will Carry Them: Reflections on the 2015 Disability Day of Mourning by ASAN Ari Ne’eman (February 27, 2015):

http://autisticadvocacy.org/2015/02/on-our-backs-we-will-carry-them/

National Council on Disability Supports Annual “Day of Mourning” for People with Disabilities Killed by Family Members and Caregivers (February 28, 2015): http://www.ncd.gov/newsroom/02282015

 

“I think that all people who feel that there is injustice in the world anywhere should learn

as much of it as they can bear. That is our duty.” –Alice Walker

 LIST OF NAMES READ AT DAY OF MOURNING

  • Justin Malphus, 5 years old, beaten and drowned by his mother in April 2000.
  • Gabriel Britt, 6 years old, suffocated by his father in March 2001.
  • Idriss Stelley, 23 years old, killed by SFPD during a 5150 mental health intervention in June 2001.
  • Mark Owen Young, 11 years old, poisoned and then pushed off a bridge by his mother in a murder-suicide in September 2001.
  • Jahid Akbar, 32 years old, killed by police while holding a knife in November 2001.
  • Brahim Dukes, 18 years old, starved by his stepmother in December 2001.
  • Johnny Churchi, 13 years old, strangled by his mother in in 2001.
  • Lilian Leilani Gill, 4 years old, strangled by her adoptive mother in March 2002.
  • Richard Tims, , 28 years old, killed by police at a bus stop for holding a swiss army blade in March 2002.
  • Mitchell Dickson, 10 years old, slashed to death by his mother in June 2002.
  • Dale Bartolome, 27 years old, killed by his father in a murder-suicide in July 2002.
  • Craid Holden, 20 years old, denied access to this asthma inhalant, died in police precinct in 2002.
  • Paul Childs III, 15 years old, killed in a catastrophic encounter with police, July 2003.
  • Torrance Cantrell 8 years old, killed by a brutal church exorcism attempt to ‘cure’ his autism, August 2003.
  • Jason Dawes, 10 years old, suffocated by his mother in August 2003.
  • Maggie Caraballo, 38 years old, beaten to death by her sister in August 2003.
  • Scott Olsen, 29 years old, starved to death by his sister in December 2003.
  • Angelica Auriemma, 20 years old, drowned by her mother who first tried to electrocute her to death in 2003.
  • Eric Bland, 38 years old, starved to death by his sister in March 2004.
  • Scarlett Chen, 4 years old, drowned by her mother in July 2004,
  • Patrick Markcrow, 36 years old, drugged and suffocated by his mother in March 2005.
  • Tiffany Pinckney, 23 years old, locked in a basement and starved to death by her sister and brother-in-law in April 2005.
  • Ronald Madison, 40 years old was shot in the back during by police officers during the The Danziger Bridge shootings 6 days after Hurricane Katrina. In September 2005.
  • Sarah Naylor, 27 years old, shot by her mother in a murder-suicide in September 2005.
  • Christopher DeGroot, 19 years old, died of severe burns after he was locked in his parents’ apartment alone during a fire in May 2006.
  • Katie McCarron, 3 years old, suffocated by her mother in May 2006.
  • Asa Sullivan, 26 years old, bipolar, shot 16 times by police while he hid in a 2 1/2 foot crawling space in June 2006.
  • William Lash III, 12 years old, shot by his father in a murder-suicide in July 2006.
  • Lakesha Victor , 10 years old starved to death after months of horrific abuse by her mother in July 2006.
  • Marcus Fiesel, 4 years old, wrapped in heavy blankets by his foster parents and left in a closet to suffocate while they went out of town in August 2006.
  • Ulysses Stable, 12 years old, throat slit by his father in November 2006,
  • Brandon Williams, 5 years old, poisoned and beaten to death by his mother in March 2007.
  • Francecca Hardwick, 18 years old, locked in a burning car with her mother in a murder-suicide in October 2007.
  • Naomi Hill, 4 years old, drowned by her mother in November 2007.
  • Shellay Ward, 7 years old, starved and neglected by her parents in November 2007.
  • Maxwell Eyer, 2 years old, beaten to death by his father in December 2007.
  • Jared Greenwood, 26 years old, died of infected bed sores after being left in place and neglected by his mother in 2007.
  • Criste Reimer, 47 years old, thrown from a balcony by her husband in 2007.
  • Xiao Fei, 20 years old, poisoned and suffocated by her mother in 2008.
  • Calista Springer, 16 years old, chained to a bed and abandoned in a fire by her entire family in 2008.
  • Courtney Wise, 17 years old, starved to death by her mother in February 2008.
  • Mohammad Usman Chaudhry , 21 years old was shot in a catastrophic encounter with law enforcement in March 2008.
  • Ethan Scott Kirby, 3 years old, beaten to death by his mother’s boyfriend in August 2008.
  • Tom Inglis, 22 years old, died after his mother administered an overdose of heroin to him in November 2008.
  • Kyle Dutter, 12 years old, shot by his father in a murder-suicide in 2008.
  • Jacob Grabe, 13 years old, shot by his father in 2008.
  • Christian Clay Jenkins, 14 years old, given an overdose of oxycodone by his father in 2008.
  • Jeremy Fraser, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life in March 2009.
  • Pamela Camille Hall, 59 years old, stabbed by her son-in-law in April 2009.
  • Shylea Myza Thomas, 9 years old, starved to death by her aunt, who then hid her body in order to continue to collect money she received for Shylea’s care in April 2009.
  • Lloyd Yarbrough, 62 years old, fed an overdose of prescription medication through his feeding tube by his wife in May 2009.
  • Peter Eitzen, 16, stabbed by his mother in July 2009.
  • Tony Khor, 15 years old, strangled by his mother in October 2009.
  • Betty Anne Gagnon, 48 years old, tortured to death by her sister and brother-in-law in November 2009.
  • Walter Knox Hildebrand Jr, 20 years old, died of a seizure induced by his brother’s physical abuse in November 2009.
  • Jeremy Bostick, 11 years old, gassed by his father in 2009.
  • Lexie Agyepong-Glover, 13 years old, left in a frigid creek by her mother and died of drowning and exposure in 2009.
  • Terrell Stepney, 19 years old, poisoned by his grandmother in a murder-suicide in 2009.
  • Laura Cummings, 23 years old, raped and tortured to death by her mother and brother in January 2010.
  • Jude Mirra, 8 years old, forced by his mother to overdose on prescription medications in February 2010.
  • Ajit Singh, 12 years old, forced by his mother to drink bleach in February 2010.
  • Steven Eugene Washington, age unknown, was shot by police after he approached them and appeared to remove something from his waistband in March 2010.
  • Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote area in April 2010.
  • Leosha Barnett, 17 years old, starved to death by her mother and sister in May 2010.
  • Payton Ettinger, 4 years old, starved by his mother in May 2010.
  • Glen Freaney, 11 years old, strangled by his mother in May 2010.
  • Christopher Melton, 18, gassed by his mother in a murder-suicide in June 2010.
  • Rylan Rochester, 6 months old, suffocated by his mother because she believed him to be autistic in June 2010.
  • Zain Akhter, 5 years old, and Faryaal Akhter, 2 years old, strangled by their mother after she first tried to get them to drink bathroom cleaner in July 2010.
  • Kenneth Holmes, 12 years old, shot by his mother in a murder-suicide in July 2010.
  • Emily Belle Molin, 85 years old, hit and run over with a car by her son in August 2010.
  • Rohit Singh, 7 years old, beaten to death by his father in September 2010.
  • Karandeep Arora, 18 years old, suffocated by his parents in October 2010.
  • Zahra Baker, 10 years old, murdered and dismembered by her stepmother and perhaps her father in October 2010.
  • Chase Ogden, 13 years old, shot by his mother in a murder-suicide in October 2010.
  • Jawara Henry, 27 years old, was asphyxiated, the city medical examiner’s office said, ruling the death a homicide in December 2010.
  • Matt Cicelski, 38 years old, killed by police during a mental health crisis in January 2011.
  • Donald Parojinog, 83 years old, starved by his daughter in January 2011.
  • Joseph Conant, 11 years old, and Nacuma Conant, 33 years old, shot by their father/brother in July 2011.
  • Julie Cirella, 8 years old, poisoned by her mother in July 2011.
  • Charles Hill, 45 years old , killed by police in July 2011.
  • Chad Jackson, 25 years old, starved and neglected by his mother in July 2011.
  • Benjamin Barnhard, 13 year old, shot by his mother in a murder-suicide in August 2011.
  • Jori Lirette, 7 years old, decapitated by his father in August 2011
  • Noe Medina Jr, 7 months old, thrown 4 stories by his mother in August 2011.
  • Al Bing. 48 years old .dead as a result of negligent homicide while in the care of staff at a group home facility in September 2011.
  • Stephon Watts, 14 years old, fatally shot in catastrophic encounter in February 2012 .
  • Daniel Corby, 4 years old, drowned by his mother in March 2012.
  • George Hodgins, 22 years old, shot by his mother in a murder-suicide in March 2012.
  • Malea Blakely-Berry, 16 years old, starved by her mother in June 2012.
  • Matthew Graville, 27 years old, tortured and beaten to death by his half-brother in July 2012.
  • Pralith Pralourng, 36 years old, killed in the financial district while holding a box cutter by Officer Mary Godfrey in August
  • Kadeem Jesse Shillingford, 15 years old, drowned at a back to school pool party in view of lifeguards in September 2012.
  • Corey Foster, 16 years of age, after being restrained by school staff members for allegedly refusing to leave the basketball court in December 2012.
  • Melissa Stoddard, 11 years of age, died from asphyxiation after her father and step-mother hog-tied her to her bed & covered her mouth with duct tape in December 2012.
  • Robert Gensiak, 32 years old, starved by his mother and sisters in March 2013.
  • Alex Spourdalakis, 14 years old, poisoned and stabbed by his mother and godmother in June 2013.
  • Matthew Hafer, 28 years old, poisoned by his mother in July 2013.
  • Marian Roberts, 57 years old, shot by her father in a murder-suicide in August 2013.
  • Jaelen Edge, 13 years old, poisoned by his mother along with his sister Faith in September 2013.
  • Tamiyah Audain, 12 years old, starved, abused and neglected by her cousin in September 2013.
  • Dameian “Luke” Gulley, 14 years old, strangled by his stepfather in November 2013.
  • Randle Barrow, 8 years old, drowned by his mother in a murder-suicide in December 2013.
  • Mickey Liposchok, 52 years old, shot by his father in a murder-suicide in December 2013.
  • Isabella Herrera. 7 years of age died after school bus driver failed to properly secure her wheelchair in January 2014.
  • Vincent Phan, 24 years old, shot by his mother in a murder-suicide in January 2014.
  • Damien Veraghen, 9 years old, poisoned and suffocated by his mother in a murder-suicide in January 2014.
  • Errol Chang, 34 years old, killed by police in February 2014.
  • Matt Hoffman, 32 years of age, killed by police during a mental health crisis in January 2015.
  • Jennifer Caballero, 11 years of age, when missing from the middle school and was found dead six hours later in October 2012.
  • Keith Coty, age 6, died after school staff delayed in getting him help for a medical emergency in February 2014.
  • Ryan Davies, 12 years old, drowned after his mother caused him to fall off of a bridge in a murder-suicide in April 2006.
  • Anita Gay, 54 years old, killed by police in February 2008.
  • Yanira Serrano Garcia, 18 years old, killed by police during a mental health crisis in June 2014.
  • Tai Lam, 67 years old, killed by three attackers while sleeping on the street December 2014
  • Kelly Thomas, 37 years old, killed by police, in July 2007.
  • Emmanuel Lee, age unknown, died while hospice equipment was taken from his home January 2012.
  • Betty Skinner, 52 years old, murdered and attacked in home in December 2013 (trans person, dead name of Brian Skinner).
  • Jennifer Daugherty, 30 years old, taken captive for two days, raped, and forced to drink cleaning fluids in February 2010.
  • Bobby Bennett, 52 years old, shot and killed by police in October 2013
  • Kimberly Daily, 16 years old, strangled by a person she met on Facebook in August 2010
  • Chris Sorigani, 49 years old, beaten to death in attack by a stranger in October 2013
  • Patricia Kohler, 72 years old, starved to death by her granddaughter and daughter in September 2009
  • Otis Clay, 66, attacked and beaten outside his home in May 2012
  • Mary Baker, 58, poisoned by her boyfriend with prescription medication in January 2013
  • Christopher Blackwell, 23 years old, died of care negligence in institution in September 2013
  • Andrew Deloatch, 45 years old, beaten to death and asphyxiated by housemate in September 2013
  • Jonny Braning, 48 years old, beaten to death in his apartment in March 2002
  • Robert Ethan Saylor, 26 years old, killed by three police officers over a dispute regarding a movie ticket in January 2013
  • Joseph L. Taylor, 42 years old, both he and his attendant Mary F. Hale, age 42, were bludgeoned to death in August 2012
  • Richard Gentry, 68 years old, murdered by roommate in August 2013
  • Robert Gensiak, 24 years old, starved by family in October 2013
  • Marian Roberts, 58 years old, shot by her father in August 2013
  • Aliyah Mariue Branum, 2 years old, beaten by her mother until her skull cracked in August 2013
  • Jessie Dziomba, 19 years old, died of illness due to parental neglect in March 2013
  • Harvey Lee Crapo, 68 years old, hit by an intoxicated driver while strolling in his wheelchair in August 2013
  • Terrance Sanders, 29 years old, left by caretaker to die in a hot car in July 2013
  • Melissa Torres, 32 years old, strangled and suffocated by her boyfriend in August 2013
  • Lola Mae Stout, 29 years old, left for dead in a van by her family in July 2013
  • Melinda ‘Mindy’ Pace, 53 years old, shot by her sister in July 2013
  • Lylah Johnson, 8 years old, murdered by her mother in March 2011
  • Gerald Lee Lakes, 24 years old, starved to death by parents in May 2013
  • Michael Stevens, 26 years old, neglected and abused by mother in April 2013
  • Victoria Hines, 58 years old, neglected by boyfriend in April 2013
  • Markea Blakely-Berry, 16 years old, starved to death by mother in April 2013
  • Robin Adams Jr, 23 years old, starved to death and neglected by mother April 2013
  • Darnell ‘DJ’ Hunter, 18 years old, died from medical neglect caused by father in February 2013
  • Christina Harms, 22 years old, tortured and starved by her family in March 2013
  • Francis Angelica Alfonso Pellarano, 19 years old, stabbed to death by boyfriend in March 2013
  • Ronnie Joe Gammage, 24 years old, kidnapped and beaten to death in December 2013
  • Victor Soderquist Jr., 62 years old, died of medical neglect in group home in December 2005
  • Zahra Baker, 10 years old, murdered by stepmother after abuse in October 2010
  • JoBeth Marchand, 52 years old, strangled to death Zahra Baker, December 2011
  • Eliazar Hernandez, 16 years old, shot and killed Zahra Baker, October 2009
  • Noe Medina, Jr. 7 months old, thrown off a parking structure and killed by mother in August 2011
  • Louis Lockett, 72 years old, shot and killed by wife in August 2011
  • Danieal Kelly, 14 years old, starved to death by parents in August 2006
  • Daniel McDonnell, 40 years, went into respiratory distress when officers tazed him twice, not allowing him access to his medication in September 2011
  • Matthew Degner, 14 years old, died of parental neglect in September 2011
  • Teyshawn Young, 3 years 10 months old, beaten to death by mother’s boyfriend in September 2010
  • Gerald Hyska, 56 years old, drowned in bathtub due to caretaker negligence in August 2011
  • Jori Lirette, 7 years old, decapitated and dismembered August 2011
  • Jennifer Pimentel, 27 years old, strangled to death, October 2011
  • David Montambault, 39 years old, died from head wounds caused by a hit-and-run in September 2011
  • Camren Conyer, 23 years old, stabbed to death in November 2011
  • Anthony Parker, 16 years old, beaten to death in group home in December 2011
  • Eva Alta Tice, 60 years old, attacked and murdered in December 2011
  • Cindy Sumner, 21 years old, beaten to death in August 2009
  • Richard Sonneberger, 40 years old, found unresponsive in bathtub due to caretaker negligence in January 2012
  • Elma Sartuche, 61 years old, stabbed in her home in February 2012
  • Sharon Lee Sklavos, 38 years old, beaten to death in July 1994
  • Jordan Hickey, 21 years old, shot in a thrill-killing while riding his bicycle in April 2011
  • Julie Cirella, 8 years old, murdered by purposely being given food she was allergic to in July 2012
  • Jonathan Singer, 10 years old, murdered by mother and father in April 2011
  • Wesley Lawson, 39 years old, starved to death in March 2010
  • John Parisi, 45 years old, died in fight at group home in April 2012
  • Perry Jones, 50 years old, he and his father were shot by his mother in April 2012
  • Cherry Walker, 29 years old, beaten and burned by stepmother in May 2012
  • Paul McCann, 42 years old, beaten to death in group home by caretaker in May 2012
  • Asher Basir, 4 years old, drowned by mother in May 2012
  • Michael Elkins, 25 years old, died of neglect in December 2011
  • David Lynn Pennington, 50 years old, stabbed to death in his home in May 2011
  • Anthony Chambers, 38 years old, beaten to death by police in June 2012
  • Kyllia Lynett Holback, 33 years old, stabbed to death and strangled in June 2012
  • Sedale Dorsey, 23 years old, shot in a drive by in October 2010
  • Patrick Clare, 35 years old, murdered by father, father administered valium and morphine to induce overdose in June 2012
  • Alfred Dobson Jr., 35 years old, shot and murdered by police officers in July 2012
  • Arville Rhodes, 63 years old, died of dehydration and starvation caused by caretaker neglect and abuse.
  • Lonnie Eason, 48 years old, died after being left in a hot car by bus driver and caretaker August 2011
  • Kenneth Alberts, 59 years old, beaten and stabbed to death August 2012
  • William Stull, 42 years old, burned in a fire due to an inaccessible safety exit August 2012
  • Christopher Breese, 38 years old, burned in a fire due to an inaccessible safety exit August 2012
  • Eddie Lee, 65 years old, burned in a fire due to an inaccessible safety exit August 2012
  • Rene Veras, 39 years old, stabbed in the chest and asphyxiated by mother March 2011
  • Shaneka Webber, age unknown, murdered by mother–hit in the head with a fire extinguisher until she died September 2012
  • Johnny Castillo-Romero, 23 years old, shot and killed by police September 2012
  • Shawn Francisco Vigil, 23 years old, committed suicide in jail cell due to lack of deaf accommodations in September 2005
  • Brian Claunch, 45 years old, shot to death by Houston Police September 2012
  • Patrick Caruthers, 19 years old, fatally shot September 2012
  • Timothy Riley, 38 years old, murdered for his $40 paycheck September 2012
  • Ginny Hughes, 2 years old, abused, died from noxic brain injury caused by babysittier July 2012
  • Stanley Gibson, 43 years old, murdered by police December 2011
  • Brandon Johnson, 25 years old, died of medical neglect while asking nurses for help October 2012
  • Lauren Wolf, 56 years old, caregiver walked away while Wolf choked to death, 2009
  • Ruth Pyne, 51 years old, beaten and murdered by son 2011
  • Yolanda Reese-Brooks, 40 years old, died of negligence at husband’s hands October 2012
  • Otto Zehm, 36 years old, beaten to death by police offer mistakenly identifying him 2006
  • Matthew Graville, 27 years old, tortured, killed, then frozen and buried by step brother June 2012
  • Casey Axsom, 25 years old, starved to death by mother, 2006
  • Danielle Sinyella, 39 years old, abandoned at a cemetery to die June 2011
  • Corey Foster, 16 years old, killed by school staff in April 2012
  • Betty Jones, 60 years old, shot and killed by her half brother’s daughter’s ex-boyfriend April 2012
  • Michael Victor Shull, 21 years old, robbed then stabbed to death December 2012
  • Nathalyz Rivera, 3 years old, starved to death by her parents January 2013
  • Louis Buddy Musso, 59 years old, tortured to death 1999
  • Ramsay Scrivo, 32 years old, murdered by his mother January 2014
  • Andrea Ruth, 12 years old, parental negligence November 2012
  • Kevin Chadderton, 62 years old, hit in the head during an argument February 2014
  • David Vernon, 56 years old, died from caretaker neglect July 2009
  • Lucas Ruiz, 17 months old, poisoned by mother January 2014
  • Marcus Hill, 3 years old, beat to death by stepson December 2010
  • Jerome Murdough, 56 years old, died in a 100 degree jail cell after excessive heat was directed to his cell February 2014
  • Gloria Martin, 55 years old, stabbed by nephew April 2014
  • Ezell Ford, 25 years old, killed by LAPD August 2014

 

Bay Area Day of Mourning: Alice Wong

On Sunday, March 1, 2015, the Bay Area disability community gathered at the Ed Roberts Campus to remember and mourn the deaths of disabled people at the hands of their parents, caregivers or care providers or by law enforcement and other authorities.

This event, the Day of Mourning, is in its fifth year with similar local events taking place in cities across the US and internationally.

For more information about the Bay Area Day of Mourning including the program, action steps and complete list of names recited, go here:

http://disabilityvisibilityproject.com/2015/02/28/bay-area-day-of-mourning-program-information-and-list-of-names/

Below is the full-text of the speech by one of the speakers at the event, Alice Wong.

Hi, my name is Alice Wong and I am the founder and project coordinator of the Disability Visibility Project. One of the aims of our project is to record the stories of people with disabilities by people with disabilities…in their own words and on their own terms.

Why is this important? Related to this day, it’s because our lives are so easily forgotten, ignored and excluded. When we are alive, we have to fight for recognition and in death our lives are cast in stereotypes and clichés that robs us of our innate humanity.

I’d like to say a few words and remember the lives of Ben, Max, and Olivia Clarence, three disabled children murdered by their mother, Tania Clarence, on April 22, 2014 in London.

With her husband and non-disabled daughter out of town, Tania Clarence suffocated her three children and then tried to kill herself. She said she could “see no hope for the future” of her children and felt that their quality of life was more important that the length of their lives.

While Tania Clarence admitted to killing Ben, Max, and Olivia at home, she denied murdering them. The charges of murder were dropped in exchange for a guilty plea to manslaughter on the grounds of diminished responsibility.

In the words of the prosecutor: “It is clear on the evidence Mrs. Clarence killed her three children because she wanted to end their suffering and at the time she committed the act she could not see any alternative or any other way out of their joint suffering.”

When I learned about this case, it hit me hard in the gut. You see, I have the same disability as Ben, Max, and Olivia: spinal muscular atrophy. The press on this case described SMA as a ‘muscle wasting’ disease. In the media, words like ‘abnormalities,’ ‘suffering,’ ‘deformities,’ and ‘life-limiting’ are used to describe this condition that is my lived experience while failing to mention the impact of social support, adequate services and disability pride.

In another world, in another set of conditions, with another set of parents, that could have easily been me. If I could speak to Ben, Max, and Olivia, I would say something like this:

Yes, you needed total help with your personal care.

Yes, your muscles were going to continually become weaker over time.

Yes, most people considered you vulnerable and “wasting away.”

But you know what? I bet you also knew how to have fun, enjoy life, and dream big.

I wish that people didn’t think that you were trapped in your body, powerless and filled with suffering.

I wish that the three of you lived until you were old enough to use a computer so we could connect.

I wish my disabled friends and I could have welcomed you to this funky global crip tribe and mentor you in whatever ways you wanted.

As a fellow disabled kindred spirit, please know this:

Even in death,

You are not alone.

You are valued.

You are remembered.

You are loved.

Ben, Max, and Olivia will never have a chance to write their own futures, to make their decisions and become their actualized selves whether they lived to 15, 45 or 80. Their mother robbed them of that choice because of her evaluation of their quality of life and societal worth. Tania Clarence got a plea bargain for what I believe is a hate crime and genocide.

And it is because of the murder of Ben, Max, Olivia and countless other children and adults with disabilities at the hands of their parents, guardians or care providers that I’m here at this vigil to honor the dead and fight like hell for the living.

In a blog post about the ADA last year, Autistic activist Amy Sequenzia said the following: “After 25 years we still fight for access, equality and opportunity. We still need to remind non-disabled people, and the media, of our humanity.”

I’d like to imagine a time when disabled people do not have to prove their humanity and defend their right to exist. So much work remains and it is up to all of us to claw and lash out at our ableist oppressors, in all of its insidious forms. We are here. We will not forget.

 


Asian American woman with long black hair and glasses. Her head is tilted slightly to the left side of the photo. She is wearing a red shirt with bows.

Alice Wong is a Staff Research Associate at the Community Living Policy Center at the University of California, San Francisco and a Council Member of the National Council on Disability. She is also the Founder and Project Coordinator of the Disability Visibility Project. Follow Alice on twitter: @SFdirewolf

 

 

 

Bay Area Day of Mourning: La Mesha Irizarry

On Sunday, March 1, 2015, the Bay Area disability community gathered at the Ed Roberts Campus to remember and mourn the deaths of disabled people at the hands of their parents, caregivers or care providers or by law enforcement and other authorities.

This event, the Day of Mourning, is in its fifth year with similar local events taking place in cities across the US and internationally.

For more information about the Bay Area Day of Mourning including the program, action steps and complete list of names recited, go here:

http://disabilityvisibilityproject.com/2015/02/28/bay-area-day-of-mourning-program-information-and-list-of-names/

Below is the full-text of the speech by a speaker at the event, La Mesha Irizarry.

mesha Irizarry, administrator of Idriss Stelley Foundation, that provides fee, direct services to grieving friend and families of Loved Ones killed by law enforcement, and survivors of police misconduct. My only biological child, 23 yr Black student Idriss Stelley, bipolar, was shot 48 times by 9 SFPD “Peace officers” inside the Metreon Theater Complex on June 12, 2013. The intersection of disability and race compounds the lethality of police mental health intervention : Idriss was killed one month after the implementation of the first SFPD mental health training. While Idriss should have been transported for evaluation at SFGH, all they saw was an agitated, 220 pd black suspect and they shot him like a rabied animal. Ever since Idriss was killed, in spite of repeated police mental health trainings, the killing of mentally challenged people in SF has exponentially increased. No amount of training can change the organizational culture, and calling the police to do a mental health intervention amounts to calling a mortician to deliver a baby. Rest in Power…. Idriss Stelley….Richard Tims… Jahid Akbar…. Craig Holden…. Asa Sullivan….Charles Hill… Pralith Pralourng… Matt Hoffman… Anita Gay (Berkeley)… Errol Chan (San Jose) … Yania Serrano Garcia (Half Moon Bay)…. Mental Health intervention should be done by Psych Techs and community megotiators, SFPD mental health training should be defunded and re-allocated to pu blic heath and the mobile assistance patrol, with police only as back up to be used at last resort. Mental Helth workers face dangerous patients every day, but they never kill or disable anyone, different organizational culture !


Older black woman with long braids holding a large poster with a photo of her son, a young African American man

 

Older African American woman in braids wearing glasses being interviewed by an African American man on the street. He is holding audio equipment and wearing headphones

 

 

La Mesha Irizarry, Director of Idriss Stelley Foundation

Hotline (bilingual Spanish) 415-595-8251

Counseling, support group, pro bono attys referrals, court accompaniment,

Information & Referrals, help with staging rallies and protests.

For an appointment, please call our hotline

office is located @ Armstrong Place,

5600 3rd Street, Suite #429,

SF CA 94124

We are wheelchair accessible.

Co-Directors:

Jeremy Miller, 415-595-2894, djasik87.9@gmail.com

mesha Monge-Irizarry, 415-595-8251, meshairizarry@gmail.com

Rebecca Ruiz-Sunwo, 415-902-2794, rebecca415@gmail.com

Bay Area Day of Mourning: Leroy Moore

On Sunday, March 1, 2015, the Bay Area disability community gathered at the Ed Roberts Campus to remember and mourn the deaths of disabled people at the hands of their parents, caregivers or care providers or by law enforcement and other authorities.

This event, the Day of Mourning, is in its fifth year with similar local events taking place in cities across the US and internationally.

For more information about the Bay Area Day of Mourning including the program, action steps and complete list of names recited, go here:

http://disabilityvisibilityproject.com/2015/02/28/bay-area-day-of-mourning-program-information-and-list-of-names/

Below is the full-text of opening remarks by one of the speakers at the event, Leroy Moore.

Yes, today we mourn for all people with disabilities, who are Deaf- like people of color, queer, trans, poor, white, so called immigrants, houseless, youth elders, and those locked up. This issue goes beyond a grant cycle, non-profit system, a project, an event–this is the harsh everyday reality so we need an “out of the box” solution-a solution that has us-people with disabilities and who are Deaf, in control with radical shifts. Under former Governor Pete Wilson, there was a state program that dealt with crimes against people with disabilities that did great work but when the grants dried up, the program shut down. The issue is still here and even greater today. We don’t need organizations like Autism Speaks , who don’t have our voice at table, we don’t need more police training that doesn’t include us, we don’t need reports after reports saying the same thing. We don’t need to separate ourselves in this hierarchy that only plays into the system that makes our disability and our lives into a system of others who get a 9 to 5 and play gatekeepers to our realities. As we all know people with disabilities and those who are Deaf have faced state violence from the birth of this country to today being in and out of institutions and many youth don’t have a chance to enjoy this world because of parents and loved ones so its up to us to bring the full story to the surface, not just what mainstream media reports. Many may ask “Why include police brutality on this day?” Before Black Lives Matter, the issue of police killings of people with disabilities have been here. Mesha explained it….the law says one thing but today we still have separate youth programs, classrooms, and housing adding to the isolation. This isolation is a killer and leads others to kill. The ADA is like any other law, a piece of paper but the awareness and cultural shift of everyday actions in the home and behind the door realities comes from one on one, two on two, and so forth interactions of people who are advocating these values in everyday living. Alice Wong talked about violence against youth with disabilities-what can be done to end this isolation? What are we passing down to our youth? Disability studies, rights culture work and so on doesn’t mean anything if it doesn’t seep into the private spaces that young people are at i.e. “the home”. The disability movement, disability cultural movement, disability rights movement, and disability justice movement is international and while it started here, it is Worldwide so we must learn from each other across our false borders. So as we mourn today, world wide tomorrow, we must advocate outside the box, outside of non-profit turf wars, outside of the grant cycles, outside of popular movement and work inside all of these systems world wide.

 


A black man sitting at a wooden bench and one hand is raised, at his chin. He is wearing brown slacks and a brown t-shirt. He is staring right at the camera.

Leroy F. Moore Jr. is founder of Krip-Hop Nation (KHN) on programs that empower persons with disabilities in arts, self-advocacy, and music. KHN’s International Movement travels around the world to provide workshops on disabilities initiatives and Human Rights for PWDs through music and hands on workshops/lectures & performances. Moore helped produce Pushed Limits 3 part radio series on Hip-Hop & artists with disabilities at KPFA 94.1 FM Berkeley, CA. in 2004 and also coordinated a workshop on Hip-Hop with community advocates with disabilities and LGBTQ persons at University of California at Berkeley.  KHN has performed at other prestigious universities/colleges like New York University, NYU, Harvard and more.  KHN also traveled to annual festivals like DADA Festival in Liverpool, UK and other venues in Germany, all over the US and Canada and is planning an Africa tour.

Logo for KRIP HOP with a wheelchair symbol with the person tipped back in the wheelchair, a turntable is in the center of the wheel, on the right side is a person breakdancing

For more on Krip-Hop: http://poormagazine.org/krip_hop

Email: kriphopnation@gmail.com

Twitter: @kriphop

Bay Area Day of Mourning: Corbett Joan OToole

On Sunday March 1, 2015, the Bay Area disability community gathered at the Ed Roberts Campus to remember and mourn the deaths of disabled people at the hands of their parents, caregivers or care providers or by law enforcement and other authorities.

This event, the Day of Mourning, is in its fifth year with similar local events taking place in cities across the US and internationally.

For more information about the Bay Area Day of Mourning including the program, action steps and complete list of names recited, go here:

http://disabilityvisibilityproject.com/2015/02/28/bay-area-day-of-mourning-program-information-and-list-of-names/

Below is the full-text of opening remarks by the co-organizer of the event, Corbett Joan OToole.

Why are we here today?

I first got involved with this issue when Tracy Lattimer, a 12 year old girl with cerebral palsy, was murdered by her father in 1993.

The Canadian press and courts sympathized with him and her father is currently speaking around the world to create laws that allow for the killing of disabled people without penalties.

In 2012, Autistic high school student Zoe Gross said NO to the violence. In Sunnyvale, California  George Hodgkins, a 22 year old Autistic man, was killed by his mother. The local media coverage sympathized her. George was written out of the story of his own murder.

Zoe turned her anger into action. She, along with the Autistic Self Advocacy Network, created the National Day of Mourning. This year there are vigils in 25 locations in 4 countries.

Ari Ne’eman, Executive Director of the Autistic Self Advocacy Network said:

“Today, we are gathered together to remember members of our community who had their very lives taken from them, for no other reason than because they were one of us. Because they were disabled.”

Around this room are the names of 224 disabled people who were killed for being disabled. Some of their killers are family members, others are special education teachers, staff at group homes and police.

WHY ARE WE HERE?

Because as many as 1 in 4 people with cerebral palsy are killed.

Because over half the people killed by the San Francisco Police are disabled people.

Because physical, emotional, financial and sexual abuse happen to nearly all disabled people.

Because each act of violence –

whether it be abuse at home, at school, in a hospital or jail –

each is seen as separate and individual –

and not what is it –

part of the larger systemic abuse of disabled people.

Disabled people are being killed and starved and beaten and abused every single day. Yet there is very little being done to stop it.

Today we are here to witness the violence against disabled people.

We are here to say:

NO to the violence

NO to the secrecy

NO to the lack of action.

Today our speakers will tell us about the violence they see in our communities and the solutions they are working on.

They invite us to become a community that is accountable to each other – a community committed to STOPPING THE VIOLENCE.

Each of your programs lists ACTIONS that we can take to stop the violence.

Thank you for showing up today and committing your precious time to ending the violence against disabled people.


Older white woman with short wavy brown hair. She is wearing a white and blue scoop neck shirt.

Corbett Joan OToole is an historian and researcher of disability communities. She’s written numerous peer review journal articles, book chapters, presented nationally and internationally and is widely considered the leading writer on American disabled women’s history. She worked at the original Center for Independent Living in Berkeley as well as being founding staff at the Disability Rights Education and Defense Fund, Inc. She currently consults with the Disability Studies programs at the University of California at Berkeley and the Paul Longmore Institute at San Francisco State University.

White woman with short blonde hair with glasses. She is wearing a black v-neck top and sitting in a wheelchair outdoor next to some bushes.

A Strange Reaction by Kayla Whaley

Below are a few excerpts from a blog post by Kayla Whaley about body image and disability first published November 5, 2014.

Not unlike a lot of people (girls especially), I’ve always had a complicated relationship with my appearance. Mostly, it was a negative one. It got worse as I got older. I did the typical avoiding the mirror while I brushed my teeth thing. I wore long sleeves even in the middle of summer because I hated my arms. In class, I sat with my chin in my hands, strategically pushing the skin backward to try to slim down my face. I hated being in pictures.

None of this makes me special or unique, which is a tragedy in its own right.

But it’s important, because it’s the reason I’ve been trying to take more selfies. It’s why the process of taking selfies is painful. I have to scroll through (and delete) a LOT of pictures that accentuate what I think of as flaws. It reminds me that while I’ve worked so hard to love my appearance, it’s still a challenge.

Read the full post: http://kaylawhaley.com/2014/11/05/a-strange-reaction/

Kayla Whaley

From her About page:

Kayla is a writer, reader, self-proclaimed geek, and pumpkin spice enthusiast.

She’s a graduate of the 2014 Clarion Writers’ Workshop. She writes speculative fiction, including both short stories and novels. While she sometimes ventures into the adult and middle grade waters, her focus is on young adult contemporary fantasy.

Outside of writing, she co-moderates Disability in Kidlit, works as a personal assistant, and holds a Master’s in Public Administration. The latter she puts to use working with the Atlanta Young Writers’ Institute, a nonprofit dedication to encouraging middle and high school writers.

You can find her on Twitter @PunkinOnWheels.

Photo Credit: Isadora Pennington.

A room with dimmed lighting, two people are sitting across from one another with microphones in front of them. On the left is a middle-aged white woman in a wheelchair with long brown hair. On her right, facing her, is a middle-aged white man with short brown hair.

DVP Interview: Christina Mills and Eli Gelardin, Part Two

Married couple and disability rights advocates Christina Mills and Eli Gelardin recorded their story at StoryCorps San Francisco on January 3, 2015.

This is the last of two blog posts. Below are approximate excerpts from their conversation.

On the identity of being a parent with a disability

Christina: …[once] I found that we were pregnant… I found myself finding more and more women with disabilities that had children, but had never talked about it and I’m not sure why that is, but I feel like there’s more people in our line of work than we ever knew are parents, but for some reason they just never talked about being parents and for you and I, I think, we talk about being parents all the time. It’s like, our, our identity now.

On disability pride, pregnancy, and prenatal testing

Christina: So, when we got pregnant with Olivia one of the most surprising things during that pregnancy for me, was you know people, we’ve worked in the disability rights movement for, well, I have been in it for almost 16 years now, and you’ve been in it….11 years…As much of advocates we are, we’re, we’re huge advocates, but we also have a sense of disability pride that we put off and we really appreciate and hold close…I hold my disability pride very close to me. So, when the doctors asked us if we wanted to do any type of genetic testing to see if Olivia was going to have a disability, we said no and we didn’t care whether Olivia had your disability, or had my disability, or, you know? She had a chance of having a combination of our disabilities and we didn’t care…as we, as I started sharing that information with people in the community that we work with, I think the most surprising thing for me was, when I did start telling people that yeah, we could tell Olivia has a disability through ultrasounds, that people started apologizing and they surprised me, because I thought, “Oh, my gosh, here I am, I’ve been working in the disability rights movement and talking, empowering youth with disabilities to take pride in who they are and yet, I’m sharing that I’m going to have a baby with a disability that I’m very proud of, and I have people apologizing to me in the same field.”

Eli: I think it speaks to… that challenge of feeling, giving yourself permission to, to have kids, to giving yourself permission to have a family, and to accept that wholly and feel that it’s a right.

On being pregnant with Olivia and her disabilities

Christina: …when we had our ultrasound with Olivia and saw that she had a fractured leg and utero, we knew that she had my disability, but going a little bit further down the pregnancy, we also thought that she had your disability, because her head was getting large, and so our doctor had thought maybe she had both of our disabilities, until we reached about 28 weeks, and then they realized it could be something more substantial, because her brain wasn’t forming correctly and then we knew we had a potential different disability altogether…we knew we had mine, but we weren’t sure if we had yours, and we knew that we probably had something else neurologically going on with Olivia as well. So you know, it was shocking because we were prepared to have someone a baby with either mine or yours, or a combination, but we weren’t quite prepared to have a child with different type of disability, so, I think that’s been like a huge learning experience for us, in so many wonderful ways, and then like you know, she keeps us extremely busy. She’s a very active child. But when we decided to have a second child, when she was only two years old I couldn’t believe how many people thought we were incredibly out of our minds for, for doing it a second time, knowing how much time and energy it takes having Olivia.

On being a parent of a child with multiple physical and developmental disabilities

Eli: What, have you learned from our first child, from Olivia?

Christina: …I’ve learned that we’ve got a lot of work to do in the disability rights movement. Olivia is extremely rare having skeletal dysplasia disability and having a developmental disability that’s, you know, pretty substantial, that there’s not many organizations and services that know how to handle a family first of all, of all people with disabilities, let alone a child with multiple serious disabilities.
So, I’ve learned that I’ve got a lot of work to do as an advocate and that it’s important to embrace disability the way it is, no matter what it looks like, or how it looks like, or how it is. Olivia has taught me to be extremely patient. I didn’t think I had the amount of patience needed for Olivia, but she’s taught me how to be extremely patient. She’s just given me so many more reasons why I need to work harder to create disability equality, and equality for all people, regardless if they have disabilities or not, but people who are from underserved minority communities. I mean, Olivia is, just given me a reason to work that much more.

Eli: Olivia has taught me that, once again, you know, the perceptions and the boundaries that I put on myself or on my life really are only just that. They’re,  limitations or they’re barriers that I put on, and what Livy, what I learn everyday from Livy is that, you can not operate in a free space and she has absolute truth. There isn’t a filter of what she should be or what she can or cannot do. She does what she wants to do and while she doesn’t communicate in a verbal sense she communicates through movement and she communicates through texture and through spinning and it’s no less communication than any other form… I think the boundaries that I put on myself have really changed because of our daughter, because I see that there’s much more spectrum, there’s much more freedom than, than we allow, and I allow myself.

On having a second child, Sage

Christina: You know, I think Olivia’s taught us that we can do anything, and that’s why we had the courage to have a second child and Sage has been, you know, such a different baby but such the balance we needed in our life. And although Sage is only six months old, he has already been such an amazing brother and an amazing son… when we found out we were having a son for the second time, I think that’s the third happiest day of our lives together, you were so ecstatic to have a son and every day I watch you with Sage and you guys are like bosom buddies. You just love spending time with Sage, he’s, you know, your golden ticket. [LAUGH] And he brings so much joy into our family and although we knew we wanted a second child no matter what when we had Olivia. Sage has just been an amazing addition to our family and I’m so happy that we had the courage to do it again regardless of what everyone thought and said about it.

Eli: Absolutely.

On the importance of storytelling

Christina: And I think, you know, for us, storytelling is really important, and we value it so much and we’re always sharing our life. With our friends and colleagues and people online that we hardly know, because we want to make sure that other folks know that they have a story to tell and that it’s okay to be who you are, whoever that may be and I think it’s important that we leave that kind of legacy to our children too, that, you know, they be proud of who they are that they were brought into a world on purpose and were so expected and, you know, they were never a surprise. They were so, so, so planned and I just hope that they continue to tell stories like we have and that they care about family as much as we do because, you know, we embrace our family and spend a large amount of time with even our extended relatives and I think that’s really important because we’re not only doing it because we love them, but we’re also educating them and [and in turn they are] educating others and I think that’s always a part of our life and I’m okay with that. I think it’s a good thing and it’s positive and it’s who we are. So, I appreciate that and I think our kids are going to appreciate that too as they get older.

Eli: What do you, what do you want them to know about being parents?

Christina: Well, if they make the decision to be parents I want them to know that we support them. If they don’t want to be parents, we support them too, but I think they are so fortunate and I don’t know that they’ll ever understand how fortunate they are that they were born into disability culture and that they have very accepting parents and parents that understand and can relate to them on a very different level than, than we had experienced so I think they I hope they don’t take for granted what they were brought into and that they can always come to us when they have questions. And especially you, as the wise one, that you can always give them advice that will help them determine what their, their goals are.

Eli: I would tell them both that whether they choose to have their own children, whether they adopt children, whether they partner with someone who already has children or whether they choose not to have children at all that….Find themselves in a sense of family and a sense of community with others that it’s so important to, to share, to share a sense of belonging, to share a sense of place and, and to be part, to, to pass that story on. To pass your experience on and to learn and listen.

Christina: Well, I just want you to know how happy I am that we did this together. And that I’m so proud that you’re my husband, and Olivia and Sage’s dad and that we have a beautiful family with so much love, so much love and energy and everything exciting, exciting to look forward to in the future. Thank you.

Eli: Thank you honey. I love you and I’m grateful for every day that I have you and I have your kiss.

 


Christina Mills is the Deputy Director of the California Foundation for Independent Living Centers and has been an active member of the disability rights community since her involvement in the California Youth Leadership Forum for Students with Disabilities in 1995.

Born in San Diego, California, Christina began her post-secondary education while simultaneously pursing her career in Independent Living. In 1995 she was selected to attend the California Youth Leadership Forum for Students with Disabilities (YLF) and immediately found her true passion — disability culture, history, and advocacy.

In 1999 she began working for the Independent Living Center of Orange County, the Dayle McIntosh Center for the Disabled. For over five years, Christina held various positions at the San Diego Independent Living Center, Access 2 Independence. In 2001 she was appointed by the California Governor to serve on the State Independent Living Council. She served seven years on the council and succeeded in getting youth with disabilities more visibly recognized by the larger disability community. In addition to her commitment to the SILC, Christina also served as chair of the National Council on Disability, Youth Advisory Committee and was a Project Consultant for the National Family Voices, Kids as Self Advocates (KASA) program.

In 2006 Christina left San Diego to work for the California Foundation for Independent Living Centers as the Statewide Community Organizer of the Systems Change Network. She lead the organizing and planning of Disability Capitol Action Day for six years and is a co-founded CFILC’s youth organizing program, YO! Disabled & Proud.

She has provided expert testimony to the National Council on Independent Living, the California Women’s Commission, the California Legislature, the National Council on Disability, as well as other local and statewide committees.

In 2008, she was awarded Regional IX “Advocate of the Year” by the National Council on Independent Living and awarded in 2011 the California Coalition for Youth Sue Matheson Mentoring Award.

Christina is most proud of her recent accomplishment, becoming a mother. She has shared many of her parenthood experiences by writing AT Network blog postings on adaptations that both she and her daughter use to maintain their independence.

In her spare time she enjoys traveling with her family, scrapbooking and taking photos of her daughter, son, and two fur babies.

Christina Mills on Twitter: @Momvocatemills

The California Foundation for Independent Living Centers (CFILC) is a disability rights organization made up of 21 Independent Living Centers in California. It’s mission is to increase access and equal opportunity for people with disabilities by building the capacity of Independent Living Centers.

Logo for the California Foundation for Independent Living Centers (CFILC). Black background with the state of California in yellow. 'CFILC' is written vertically over the image of the state.

Learn more about their four Programs and Coalitions: The AT Network, Digital Access Project, Disability Organizing Network and Youth Organizing! Disabled and Proud: http://www.cfilc.org/about/programs-coalitions.php

Logo for  CILFC program called Y.O. Disabled and Proud. It has an image of an upraised fist.

Website: http://www.cfilc.org

Facebook: https://www.facebook.com/CFILC.org

Twitter: @Yodisabledproud


 

Eli Gelardin serves as the Executive Director of Marin Center for Independent Living (MCIL). Mr. Gelardin has over a decade of experience working in disability services and advocacy.   During his leadership at MCIL, the small grassroots organization has grown to an annual budget of approximately $900,000 with 11 staff serving over 800 individuals with disabilities each year. In 2013, MCIL was recognized as a California Center of Excellence by its peers.

Mr. Gelardin also serves as the co-creator of QuickMatch.org , an innovative web application that blends the high tech capacity of an online personal care registry with the high touch services of local non-profit community-based organizations. QuickMatch.org was recently featured as a model for homecare innovation at the National Home and Community Based Services Conference in Washington DC.

Mr. Gelardin translates his personal experience as an individual with a disability into his professional roles. He currently serves as the Chair of the California State Independent Living Council, Chief Financial Officer of the Mission San Rafael Rotary Foundation and board member of the California Foundation for Independent Living and the World Institute on Disability.

Mr. Gelardin lives in the Bay Area with his wife Christina and their two children. They are a multigenerational disabled and proud family.

Eli Gelardin on Twitter: @EliGelardin

The Marin Center for Independent Living promotes the independence of people with all types of disabilities of all ages in Marin County, California. Their mission is:

“To assist persons with all types of disabilities to achieve their maximum level of sustainable independence as contributing, responsible and equal participants in society.”

Website: http://www.marincil.org

Facebook: https://www.facebook.com/MarinCenterforIndependentLiving?fref=ts

Twitter: @MarinCIL

 

A room with dimmed lighting, two people are sitting across from one another with microphones in front of them. On the left is a middle-aged white woman in a wheelchair with long brown hair. On her right, facing her, is a middle-aged white man with short brown hair.

DVP Interview: Christina Mills and Eli Gelardin

Married couple and disability rights advocates Christina Mills and Eli Gelardin recorded their story at StoryCorps San Francisco on January 3, 2015.

This is the first of two blog posts. Below are approximate excerpts from their conversation.

On being the first disabled child in their respective families

Christina: And I think it’s important to set the stage by letting folks know that you know, where people with disabilities and both of us were born with our disabilities and we both came from very different backgrounds. You from the East Coast and me from Ocean Side. But I was born with a disability called osteogenesis imperfecta which means I break bones easily and that was something that was you know, growing up not very common. I didn’t meet other people with my disability untill I think I was about 18 years old. Or maybe it was 16 I can’t recall, but you know, I’m a little person and I use a wheelchair full time and I’ve used a wheelchair for as long as I can remember and having a genetic disability we both knew that going into our relationship we wanted to have children but we also knew that we had a 50% chance of passing on our disability to our children. So I think it’s important to talk about our family history, though, because we were the first people born with disabilities in our family and that’s not rare, but I think that’s actually, a really cool thing about our family now is that our children are growing up in families that have parents with disabilities that we didn’t have growing up, so culturally it’s a much different and positive experience for them than it was for us.

Eli: I was born with achondroplasia, which is also a form of dwarfism and like Christina, I was the only person in my immediate family with a visible physical or significant or apparent disability. You know, I, I think for me, what, what really took time to understand was my own identity because you identify, I identified you know, as many things but I was not comfortable identifying as a person with a disability really until I hit college. And, you know, I identified as a little person and I connected with other little people for years growing up, but to identify as a person with a disability is so much different in my opinion because it’s connecting with a broader movement and it’s connecting with a civil rights movement. It’s connecting with people who have fought their lifetimes for for physical access, for societal access for the removal of barriers… and, you know, when I learned that I was part of something bigger than me it really empowered me. That made me, felt like I was part of a community.

On meeting each other

Christina: …when I met you…we almost instantly clicked, I would say. The funniest part was, well, I say that because, you know I tried to get away from you and I played a little hard to get at the beginning, which continuously cracks me up. Because we were sitting at the statewide meeting for work and I remember I had mentioned to a colleague that I was interested in you or I’d wanna get to know you a little bit more and I felt like I was in high school all over again. It was so strange and he tried not to make a big deal out of it, but he did and then I you know, completely freaked out and said, “I have an eyebrow appointment, I’ve got to get my eyebrows waxed. Bye.” [LAUGH] And I took off and left…after we spent time together that first weekend on our first date I completely felt like you would be a great dad.

Eli: I, I was very scared on our first date because I knew that I had liked you. You know, I had liked our phone conversations and I knew you were an outstanding person, cuz I had known you for five or six, five years up to that point and seen you in action in Sacramento, talking in front of thousands of people and beating the drum on advocacy issues and it really amazed me at how down to earth and sensitive you were and how you know, the Christina that I knew through work was really a different, similar but at the same time a very much more subdued Christina in person. And you know, when we started dating on that first date I was really drawn to, I was drawn to how open you were and how honest you were about who you were, what you believed in and about willing to accept me for all my good and bad.

Christina: But I’m so thankful that, you know, we met each other when we did and that we got close so quickly because… the timing couldn’t have been better, because I’m so happy that my mom got to meet you before she died.

Eli: Yeah. That was very special.

Christina: Yeah so, you know, although she didn’t get to see us get married, she at least got to know who I was gonna marry, and I think that was, you know, really important to me. She and I, at that point, still had not talked about having children. You know, I was in my early 30’s at that time, and I just was thankful that she at least met the guy that she knew…she was very proud to see me with somebody like you, and she called you a white collar type of guy, which is the kind of guy she wanted me with, which-

Eli: A good Jewish boy.

Christina: I’m just so incredibly thankful that you know, work brought us together, and that my transition to Northern California brought me to you, so, I think that’s the best thing that could have ever happened to me in my career, and I always thought that, and when we met, we talked about how work was our priority.
And we talked hours, and hours about how hard we work, and how much we’re into the work we do. And, you know, there was nothing that could take us away from that. And I thought, well, you know, having children, we’re still gonna be able to work as hard as we are now without children, but I think for me, that’s substantially changed. And, I never thought I could prioritize something higher than you and work, like I do, Olivia and Sage.

On wanting to be a parent

Eli: Going on the parenting side, I think I always wanted to be a parent but when I experienced a sudden change in my life when you know, I lost my first partner at 28. I didn’t think I was gonna be a parent. I didn’t think that was gonna be a reality for me. It was for me, it was being struck by the reality the disability not only can shape lives but it can shape choices, and not necessarily just voluntary choices. But then, you know, when we started dating and getting to know each other, I felt a renewed sense of optimism around the idea of being a parent and that it was okay to be a parent with a disability and I think for a while I was scared of that going for my experience of losing someone.

Christina: I think you know, I have a somewhat unique experience being the first person with a visible disability born into my family to a teen parent. My mom was only 16 years old. I think I’m also, at the same time, very fortunate for that experience because shortly after I was born. I think it was eight or nine months later, my aunt, who I would consider my second mom, Diane, she had my cousin, Larry. And Larry has Down Syndrome and so I had although we had very, very different disabilities and we certainly had our issues growing up. We often lived in the same house I at least was able to have somebody else with a disability around me and I think that’s really helped me with Olivia, our daughter, because developmental disability wasn’t something new to me. It wasn’t something that I was prepared for, definitely, when we decided to have a baby but I think it’s something that made it easier for me knowing that I had a lifetime of experience with Larry as my cousin who’s more like a brother, but you know, we never talked about me or Larry for that matter having children when we were younger.

And I can’t even recall, anyone, my mother or my Aunt Diane or anyone for that matter talking to me about the birds and the bees. I don’t [think they] as non-disabled people ever thought about me being sexual. So, the thought of me actually becoming a mom one day was probably the furthest thing from their mind. And I can recall the first time that I did have sex and my Mom and I were driving down the road and she said, “Did you have sex?” And I thought to myself, “How in the world does my Mom know?” [LAUGH] …and it was like top secret information because I didn’t know how she was gonna react because we had never had those conversations and I don’t think you know, in my mind, whether she thought I was eventually gonna have a relationship or not.

On being a parent with a disability

Eli: So, what does it mean to you to be a parent with a disability?

Christina: Well I think about all those interviews that I did to find a doctor first that would be supportive and being my OBGYN during my pregnancy, and how proactive I thought I was by going out and interviewing doctors before I got pregnant. And just showing up for my first OB appointment. You know, as a person with a disability, I wanted to make the right choices. And I didn’t want, I felt like I wanted to set everything up. Because you know me, I’m a planner, and I like to plan everything out. So you know, interviewing those first few doctors that were like. Oh my God, you know you have a disability that you can pass on, right? And them saying that they couldn’t support me in becoming pregnant was pretty shocking, given that, you know, we’re talking about 2000 and, what was that, 2011, 2010 that I was doing those interviews, and doctors are still making those sort of statements and stereotypes about people with disabilities. So, when I finally found our doctor, Dr. Marshal. It was like, “Ah, finally.”

Eli: I remember, one of the most significant levels of discrimination that I witnessed, was when we decided we wanna have, we wanted to have children and you were looking for a doctor, and there was a doctor that just refused to work with us because we were disabled, and it really, it, it struck me on a whole another level that, you know we, we’ve come so far in so many ways, but when it comes to a very basic, fundamental right to be happy and to have a family, and to have a sense of place in community, we still have so far to go, to promote the idea that people with all types of disabilities, not just physical disabilities but mental health, HIV, cancer, developmental disability, that we all have a right to have families.

We all have a right to community and there was no experience, there was no experience, more moving for me in my life, than seeing you as a mother. Seeing you as giving birth to our daughter, Olivia, and then, even more than that, seeing you transform into your role as an advocate, and a mom for our daughter, for both of us.

The lack of role models of parents with disabilities

Christina: …then it took us forever to get pregnant and I thought “Well, maybe I’m not supposed to be a mother” and …I don’t have a lot of role models of people with disabilities that have been parents. I have an incredible amount of role models that are just people with disabilities who have done amazing things and that I look up to and respect for a lot of different reasons but I don’t have a lot of role models with disabilities that have children and it was kind of a scary situation, because it was something that I felt like I was gonna be doing on my own and embarking on for the first time for a lot of different people, as well as for us…I run a youth program of youth with disabilities [and] I knew that they were also gonna be looking at me as a role model for, for having a child because if I hadn’t seen a lot of parents with disabilities, it’s not likely that they would have either. So it really meant taking on not only the hard work and commitment of being a mom, ‘cuz that’s my number one job. It… also represented something different in the disability community for me. It represented people looking at us as people with disabilities, as regular folks that can have families too and you know, regardless of if we have disabilities or not, some of us want children, just like anybody else. So that was really important and a lot of I put a lot of thought in thinking about, you know, what having a child would look like to the community.


Christina Mills is the Deputy Director of the California Foundation for Independent Living Centers and has been an active member of the disability rights community since her involvement in the California Youth Leadership Forum for Students with Disabilities in 1995.

Born in San Diego, California, Christina began her post-secondary education while simultaneously pursing her career in Independent Living. In 1995 she was selected to attend the California Youth Leadership Forum for Students with Disabilities (YLF) and immediately found her true passion — disability culture, history, and advocacy.

In 1999 she began working for the Independent Living Center of Orange County, the Dayle McIntosh Center for the Disabled. For over five years, Christina held various positions at the San Diego Independent Living Center, Access 2 Independence. In 2001 she was appointed by the California Governor to serve on the State Independent Living Council. She served seven years on the council and succeeded in getting youth with disabilities more visibly recognized by the larger disability community. In addition to her commitment to the SILC, Christina also served as chair of the National Council on Disability, Youth Advisory Committee and was a Project Consultant for the National Family Voices, Kids as Self Advocates (KASA) program.

In 2006 Christina left San Diego to work for the California Foundation for Independent Living Centers as the Statewide Community Organizer of the Systems Change Network. She lead the organizing and planning of Disability Capitol Action Day for six years and is a co-founded CFILC’s youth organizing program, YO! Disabled & Proud.

She has provided expert testimony to the National Council on Independent Living, the California Women’s Commission, the California Legislature, the National Council on Disability, as well as other local and statewide committees.

In 2008, she was awarded Regional IX “Advocate of the Year” by the National Council on Independent Living and awarded in 2011 the California Coalition for Youth Sue Matheson Mentoring Award.

Christina is most proud of her recent accomplishment, becoming a mother. She has shared many of her parenthood experiences by writing AT Network blog postings on adaptations that both she and her daughter use to maintain their independence.

In her spare time she enjoys traveling with her family, scrapbooking and taking photos of her daughter, son, and two fur babies.

Christina Mills on Twitter: @Momvocatemills

The California Foundation for Independent Living Centers (CFILC) is a disability rights organization made up of 21 Independent Living Centers in California. It’s mission is to increase access and equal opportunity for people with disabilities by building the capacity of Independent Living Centers.

Logo for the California Foundation for Independent Living Centers (CFILC). Black background with the state of California in yellow. 'CFILC' is written vertically over the image of the state.

Learn more about their four Programs and Coalitions: The AT Network, Digital Access Project, Disability Organizing Network and Youth Organizing! Disabled and Proud: http://www.cfilc.org/about/programs-coalitions.php

Logo for  CILFC program called Y.O. Disabled and Proud. It has an image of an upraised fist.

Website: http://www.cfilc.org

Facebook: https://www.facebook.com/CFILC.org

Twitter: @Yodisabledproud


 

Eli Gelardin serves as the Executive Director of Marin Center for Independent Living (MCIL). Mr. Gelardin has over a decade of experience working in disability services and advocacy.   During his leadership at MCIL, the small grassroots organization has grown to an annual budget of approximately $900,000 with 11 staff serving over 800 individuals with disabilities each year. In 2013, MCIL was recognized as a California Center of Excellence by its peers.

Mr. Gelardin also serves as the co-creator of QuickMatch.org , an innovative web application that blends the high tech capacity of an online personal care registry with the high touch services of local non-profit community-based organizations. QuickMatch.org was recently featured as a model for homecare innovation at the National Home and Community Based Services Conference in Washington DC.

Mr. Gelardin translates his personal experience as an individual with a disability into his professional roles. He currently serves as the Chair of the California State Independent Living Council, Chief Financial Officer of the Mission San Rafael Rotary Foundation and board member of the California Foundation for Independent Living and the World Institute on Disability.

Mr. Gelardin lives in the Bay Area with his wife Christina and their two children. They are a multigenerational disabled and proud family.

Eli Gelardin on Twitter: @EliGelardin

The Marin Center for Independent Living promotes the independence of people with all types of disabilities of all ages in Marin County, California. Their mission is:

“To assist persons with all types of disabilities to achieve their maximum level of sustainable independence as contributing, responsible and equal participants in society.”

Website: http://www.marincil.org

Facebook: https://www.facebook.com/MarinCenterforIndependentLiving?fref=ts

Twitter: @MarinCIL

 

White background with a blue circle in the middle. Inside the blue circle are white lines that make a cross-cross pattern in the shape of a star

Media Partner #84: The Association of University Centers on Disabilities

The Disability Visibility Project is thankful to have our 84th media partner: The Association of University Centers on Disabilities!

From their About Us page:

The Association of University Centers on Disabilities (AUCD) is a membership organization that supports and promotes a national network of university-based interdisciplinary programs. Network members consist of:

  • 67 University Centers for Excellence in Developmental Disabilities (UCEDD), funded by the Administration on Intellectual Developmental Disabilities (AIDD)
  • 43 Leadership Education in Neurodevelopmental Disabilities (LEND) Programs funded by the Maternal and Child Health Bureau (MCHB)
  • 15 Developmental Disability Research Centers (IDDRC), most of which are funded by the National Institute for Child Health and Development (NICHD)

These programs serve and are located in every U.S. state and territory and are all part of universities or medical centers. They serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change.

Website: http://www.aucd.org/template/index.cfm

Facebook: https://www.facebook.com/AUCDnetwork?ref=ts

Twitter: @AUCDNews

LinkedIn: https://www.linkedin.com/groups?gid=2965317