Young white woman smiling at the camera. Her hair is pulled back and she is wearing a tank top and a necklace.

Brain Drain: Chronic Illness as Disability by Anna Hamilton

The following excerpt is from a piece written by Anna Hamilton originally published in Disability Intersections on February 19, 2014. Thank you to Anna for allowing us to re-blog her article!!

Brain Drain: Chronic Illness as Disability

Anna Hamilton

Recently, the Tumblr blog Chronic Femmes–which positioned itself as a resource for chronically ill femmes–was the subject of controversy after one of its moderators answered a reader question by saying that it was important for people with chronic pain, chronic health issues, or mental health issues to not “[appropriate] disabled” when identifying themselves as chronically ill (along with some other problematic statements, such as one’s disability status only counts if that person can receive or currently receives public assistance because of their disability). Many Tumblr users with chronic pain and health issues took exception to this–although the moderator who wrote the response, Kendall, quickly apologized for her mistake, the incident itself demonstrates a common misconception about chronic pain and illnesses that feature chronic pain as a symptom–that neither are “really” disabling or debilitating.

If you don’t have chronic pain or have never experienced chronic illness, it can be hard to understand just how all-consuming pain–and related symptoms like overwhelming fatigue–can be. Writer Christine Miserandino penned a metaphorical essay, “The Spoon Theory,”in an attempt to explain to nondisabled people what it’s like to live with chronic pain and chronic illness; the essay has struck a chord with chronically ill people online, and “spoons” has become shorthand among many ill folks who find the term useful. But there are some situations where the spoon metaphor falls short–at least for me–and I’ve struggled before with communicating exactly how disabling chronic pain can be, and what it feels like, in talking to both nondisabled people and other people with disabilities.

Lots of people–especially nondisabled people–seem to not understand that chronic pain is ongoing, that it can actually be disabling, and, above all, that it can be beyond their understanding. I have heard people say that chronic pain, especially in young people, is “not a disability disability” and that people who claim to have chronic pain should just take some Advil and shut up (though not in those exact words).

I have been asked, “When you say you literally cannot get out of bed some days because of pain, what do you mean?” as if I can simply defer to a flow chart of some kind to make my experience easier for abled people to comprehend.

Read the entire post: http://disabilityintersections.com/2014/02/brain-drain-chronic-pain-as-a-disability/

 


Anna Hamilton (nom de web Annaham) is a government employee, chronically ill person, and disability rights advocate by day.  A writer who has contributed articles, cartoons, and more to publications such as xoJane, Bitch Magazine, The Toast, and Global Comment, she is also the Managing Editor of Disability Intersections. She lives near Sacramento, California, and enjoys writing humorous personal essays (all stuck in various stages of revision), spending time with her partner and their aging Yorkie, and experimenting with weird eye makeup looks. You can contact her by visiting her website at http://annaham.net, or email her at hamdotblog[at]gmail.com.

Twitter: @annaham360

 

Image for It's Our Story project. You see an American flag with the picture of the United States that's inside the upper right side of the flag instead of white starts. On the right side it says: Power. Passion. Pride.

Disability History: Colleen Starkloff, St. Louis, MO

It’s Our Story is a national initiative to make disability history public and accessible. Scott Cooper recorded and collected over 1,300 video interviews from disability leaders across the country since 2005. Check out a video uploaded on July 18, 2010:

Colleen Starkloff of St. Louis, Missouri, speaks about being married to a person with a disability and advocating for disability rights.
Colleen co-founded Paraquad and the Starkloff Institute on Disability with her husband Max. She has worked tirelessly with many organizations to increase housing options for people with disabilities.

Click on the CC button in the YouTube window for captions.

 


It’s Our Story

Website: https://sites.google.com/a/pinedafoundation.org/ios/home

YouTube: https://www.youtube.com/user/itsourstoryproject

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

Email: ItsOurStory@gmail.com

An older white woman with long gray hair. She is wearing a black top with flowers.

Living with DAWS by Lorre Leon Mendelson

Living with DAWS by Lorre Leon Mendelson

November 13, 2015

I could barely contain myself. I was moments away from meeting a new neurologist in a Nashville hospital, during my most recent hospitalization praying she would be the one to tell me why I was unable to reduce my Mirapex lower than .50 mgs, help me learn how to reduce it and then end this medication nightmare. Something I had been unable to do with either medical or behavioral health.

She arrived early on a Saturday morning at the end of August, and we listened to each other. In matter of moments she diagnosed me with Dopamine Agonist Withdrawal Syndrome (DAWS).

In 2005, as the result of a sleep study ordered by a sleep doctor, who discovered I have Restless Leg Syndrome (RLS), treating it with Dopamine Agonists (DA) including Mirapex and Requip.

Skip ahead to July 2014. My husband, Ross, was in a meeting with a therapist and expressed his concerns about changes he saw in me. This medical practitioner asked what medicines I was on and started searching the internet. The results were amazing and probably saved my life. DAs can have profoundly unhealthy side effects for everyone but are particularity dangerous for people with Obsessive Compulsive Disorder (OCD) one of my diagnoses. I have always believed we are each responsible for our own behavior and was shocked to learn this medicine can create compulsive behaviors such as gambling, shopping and eating. Other effects can include  night eating, falling, nightmares, lack of sleep, joint pain and many others that have been affecting me over the last nine years, profoundly affecting me and those closest to me.

I contacted the Food and Drug Administration to let them know the dangers of this medicine so they could alert others. Their response was less than concern. They wanted to know if I had proof that these potential side effects had affected me. Falls resulting in a spinal cord injury, a broken foot, Complex Regional Pain Syndrome (also known as RSD), numerous head, back and neck injuries where no falls had existed before were not considered proof.  Neither was compulsive shopping, imbalance or blurry/double vision all of which appeared after I began taking DAs.  My first priority became learning how to deal with DAWS, getting off the Mirapex and treat the RLS in other ways. No one seemed to know how to treat this disorder and many believed there was no cure.

But, I was determined to get off this medicine and get my life back. Pain racked my body unceasingly.  Confusion, disassociation, imbalance, blurred and double vision tried to become my constant companions but I refused to give in.

Recently, a friend of ours, Billy, with metastasized stage 4 cancer, was declared cancer-free after months of utilizing western medicine and alternative therapies. He was wonderful in helping me with resources. I turned to holistic healers and learned healthier ways of listening to myself and letting go. Everyone who did not know how to treat DAWS told me not to go lower than the .50 mgs I had been stuck on but I also knew if I stayed there I would never get well. So working with shamans, gurus, healers and my PCP, I reduced the mirapex to .25 mgs for two weeks and in mid-October discontinued taking it completely.

I am working with a neurologist on holistic ways to heal my RLS, getting Physical Therapy for the pain and weakness in my body, my therapist on CBT and continue to work with alternative complementary therapies. I am trying temporary home health care services. I have wonderful friends and  an amazing husband with whom I have just celebrated 15 years of marriage and plan to take to a local healing salt cave in the next couple of weeks. Separated by distance has not kept relatives from supporting me, my good health and reminding me how much I am loved.

I feel great and am so happy: I know I am on the right path. Have the symptoms disappeared?  No. Each morning is a new opportunity to feel good, love myself and have hope that I will continue to move through this.  My friend Billy is an inspiration. On my best and worst days, I think of his healing from cancer. No matter how rough a day he was having or how ill he felt, when anyone asked him how he was doing he always responded with, “Wonderful! I never felt better”.

And this is just the beginning. Reducing and eliminating DAs from my body has turned my life around. But there is one area in which I am lacking. Support of others with Dopamine Agonist Withdrawal Syndrome.  My intent is to get my story out to you and others like you who have suffered from a debilitating condition, to your families and friends so we may come together and support each other in recovery, sharing resources and ideas. I am not a licensed practitioner, medical, legal or other. I am simply a person with a medical condition looking to share community support. I have my team and, I also know that the best way to recover from any condition is working with others so we may share our experience, strength and hope.

Will you join me?

Sincerely,

Lorre Leon Mendelson

Disability Warrior, Educator, Author, Advocate, Artist

lorreleon@bellsouth.net

Epilogue:

November 5, 2014

November 3 is the first time in 20 years I did not have a restless leg episode and no medicine was involved. Just incredible trust in the process and the magical way things work. I even have hours now when I am not in pain. My head is getting clearer, my thinking more cogent and my relationship with my steadfast husband more intimate and closer each day- laughter is just the BEST medicine! And, as Billy says, “If you see someone without a smile, give them one of yours.”

 

RESOURCES

http://www.medscape.com/viewarticle/778433

http://www.dopadoc.com/category/symptomsnon-motor

http://www.dopadoc.com/2011/07/09/a-dirty-little-secret-about-pramipexole-mirapex-and-ocd

http://www.drugs.com/pro/mirapex-er.html

http://www.webmd.com/drugs/drug-3683-Mirapex+Oral.aspx?drugid=3683&drugname=Mirapex+Oral&pagenumber=6

http://archneur.jamanetwork.com/article.aspx?articleid=799048 (also applies to RLS)

http://www.pdf.org/en/parkinson_news_february_2010_daws

http://www.researchgate.net/publication/236920924_Dopamine_Agonist_Withdrawal_Syndrome_Implications_for_Patient_Care

Rudrani Devi, Holistic Therapist & Medical Intuitive, The Devi Clinic, Inc., www.rudranidevi.com, 615.269.9595

Photo of an older white man who is bald with a beard holding a microphone. He is holding a drawing that has flowers and the words 'Disability Pride.' Next to him is a young woman with long blond hair and a white cane. She is also holding a drawing up.

DVP Interview: Jessie Lorenz and Herb Levine

Jessie Lorenz, Executive Director of the Independent Living Resource Center San Francisco interviewed her friend and former Executive Director of the Independent Living Resource Center San Francisco, Herb Levine at StoryCorps San Francisco on October 9, 2014.

Below are approximate excerpts from their conversation.

Herb: I was running an employment program for United Cerebral Palsy at the time, and somebody said to me, “you know, Judy Heumann and a bunch of people are down there at the Federal Building at HEW; we hear something’s going on down there.” This was the Civil Rights act. It wasn’t 1964, it was 1977!

Herb: So me and a lifelong friend of mine, we went down to the building and saw what was going on, saw how time was passing and said, “you know, I think something’s gonna happen here.” Somebody said, “yeah, I think we may not leave.” For a law to become effective, you have to write regulations. The law says, “yeah do this and do that,” but it’s the regulations that say how. And, in 1977, 4 years after the law had passed, there were no regulations finalized. And the disability community said one of the loudest “fuck you”s in the history of the country… and, occupied buildings in Washington, I believe New York, in San Francisco… The others broke apart fairly quickly. San Francisco was the one that lasted 28 days.

Jessie: It’s interesting that that sit-in that lasted for 28 days here in San Francisco is credited with starting a real movement towards the Americans with Disabilities Act.

Herb: You know, the ADA really said, “don’t discriminate.” So it was important! Starting to fill in some gaps. But, yeah, not as important as 504. And you know, isn’t it amazing that a bunch of crips in the federal building for almost a month, and they, they won over the federal government! And I… I remember being there just so, happy to be there. You know? When I’ve told this story, people say, “what.. is there one message in that story?” I say, “yeah.” The message was: “you don’t need to be some extraordinary person.” We had a few extraordinary people there, but you know, most of the people there, we were all just plain shmucks like everybody else, and did it anyway! You know, it’s terrible to revise history and look back and say, “what an extraordinary group of people! Too bad we don’t have them around anymore!” You know, you got ‘em around. They’re people just like everybody who was there.

Jessie: Do you remember when we met?

Herb: Vaguely. You know. What I remember was… I was overjoyed to see you comin’. I said, “oh boy, here comes trouble!”

[Jessie laughs]

Herb: You know, I always saw my role with staff at ILRC as a kind of doorkeeper. And some people were smart enough and independent enough to go outside that door and find things I never would have dreamed of. And some people weren’t. They were too scared. You were not scared!

[Jess and Herb laugh]

Jessie: And I just remember so vividly, like, coming in, and, I needed a job, and, I didn’t know anything about any kind of movement. And, I was so broken at the time. I even went back and looked at my journals, and, just a few weeks before we met, I had written, “oh… wouldn’t it be nice if I wasn’t blind? If I had one wish I would not want to be blind.” You know, so many things in my life I had been told like, “you know, you’re disabled, you’re blind,” and on some levels, like my intellect, it was sort of, I was very much encouraged. But, in terms of my wholeness as a person and my ability to contribute in a meaningful way, and to view that way as just as meaningful as someone else who is able bodied can contribute… I got that from the movement. And, I started to feel that value the first time I met you. And it’s you, and the personality that you have, and me, and the validation of my personal experience as something that isn’t just a classification that can put me into a minority group, but it’s a really powerful thing about me that’s affected every part of my life and it actually adds value.

Jessie: You’re a good man and I care a lot of about you, and I love you, and thank you for helping to change my life into what it is today.

Herb: … I just have nothin’ to say, Jess.

[Herb laughs]

Herb: Thank you.

Jessie: Thank you.


 

Jessie Lorenz, Executive Director 

Photo of a white middle-aged woman with shoulder-length blonde hair. She is standing behind a brick wall and is wearing a black turtleneck sweater.From ILRCSF’s website:

I spend most of my time engaged in fund-raising, as well as exploring possible collaborations that enhance the mission of the agency. I am also actively involved with finance, programming, and facility management. I am a gubernatorial appointee of the State Independent Living Counsel by both Former Governor Schwarzenegger and Governor Brown, and I am a member of the San Francisco Long Term Care Coordinating

For a look at the future of independent living centers, check out their new downtown location at 825 Howard Street, San Francisco, CA, 94103

From their website:

Independent Living Resource Center San Francisco (ILRCSF) is a disability rights advocacy and support organization. Our mission is to ensure that people with disabilities are full social and economic partners, within their families and within a fully accessible community. ILRCSF’s mission is achieved by systems change, community education, partnerships with business, community organizations and government, and consumer directed services. We work to empower individuals and community, so that all people with disabilities have as full, productive and independent lives as they so choose.

ILRCSF provides three services to the disability community: information, support, and advocacy. Specifically ILRCSF programs and services include Information & Referrals services, Assistive Technology education and support, Peer Counseling, System Change Advocacy, Housing Counseling, Benefits & Employment Planning, Individual Advocacy, Benefits Eligibility, Transitioning from Institutional Living, and Self Advocacy Training.

Website: http://www.ilrcsf.org

Facebook: https://www.facebook.com/ILRCSF

Twitter: @ILRCSF

YouTube: https://www.youtube.com/user/itsnormalada


Herb Levine, Board Member, Senior and Disability Action

Herb Levine believes that what we do is not as important as who we are. His maternal grandmother was an undocumented immigrant who had to pretend to be part of someone else’s family to get into the U.S. His maternal grandfather came here on the run after a failed assassination attempt on a Czarist official. His father worked partly as an organizer for a CIO union. He was told as a child to do work that built the world, that working to become wealthy was a waste of everybody’s time. Herb says some of his heroes are: Saul Alinsky, a great community organizer; Martin Luther King, Jr., the greatest person who has lived in his lifetime; Abraham Joshua Heschel, a rabbi who marched with MLK and prayed with his feet; Judy Heumann, leader of the independent living movement; Patricia Pascoe, a self-described crazy lady who taught Herb how to live with his disability and never stop believing in a better world. Herb’s work over 45 years was almost all as a teacher and advocate in the disability rights arena. He worked for over 30 years at the Independent Living Resource Center of SF, which he calls a gift he always tried to be worthy of. Mantras Herb tries to live by: Nothing about us without us. When faced with an impossible dilemma, don’t try something else; just get past it, anyway. Answers are easy. Good questions are hard, but more valuable.

 

Blue logo against a white background. The image of a globe with a circular arc. Below in capital letters are: MIUSA.

Media Partner #85: MIUSA, Mobility International USA

We are delighted to have MIUSA, Mobility International USA as our 85th media partner!!

Founded in 1981, Mobility International USA (MIUSA) is a disability-led non-profit organization headquartered in Eugene, Oregon, USA working to advance the rights of people with disabilities globally. By implementing innovative programs, we are building bridges to create a new era where people with disabilities will take their rightful place in the world community. MIUSA is a cross-disability organization serving people with a broad range of disabilities.

MIUSA’s mission is to empower people with disabilities to achieve their human rights through international exchange and international development.

Website: http://www.miusa.org

Twitter: @MobilityINTL

Facebook: https://www.facebook.com/mobility.international

YouTube: https://www.youtube.com/user/miusa1981

LinkedIn: https://www.linkedin.com/company/mobility-international-usa

Unknown

Guest blog post: Agents of SHIELD, Change, and the Representation of Disability

There are so many nerdy crips out there. A friend of the Disability Visibility Project and fellow diehard sci-fi/Game of Thrones/comic book fan, Jihan Abbas wrote a guest blog post onMarvel’s Agents of S.H.I.E.L.D. and their depiction of disability. This is just in time for the show’s return on Tuesday, March 3, 2015 on ABC!

Agents of SHIELD, Change, and the Representation of Disability

Within the superhero genre, comic books have always strongly connected notions of difference with unique abilities. Villains and heroes alike often find their motivation and power through origin stories that speak to difference or a process of change. Alice Wong wrote a great piece over at The Nerds of Color exploring how the mythology behind superheroes is relatable to many disabled people and those who grew up on the outside looking in.

It was our shared interest in disability representation in comic books and the recent expansion of Marvel into television that prompted a back and forth between Alice and I around disability and difference in Marvel’s Agents of SHIELD. While the show first framed itself as an opportunity to view the inner workings of SHIELD – the so-called ‘normal’ folks who work behind the scenes in this superhero filled world – it was clear from the beginning that the show was pulling on powerful threads about change, difference, and otherness. While this is not unusual where superheroes are concerned, Agents of SHEILD applied these same dynamics to the bureaucracy behind the Avengers. In the first season Phil Coulson’s return from the dead and the differences in him that resulted from this process, as well as Skye’s mysterious origins, were front and centre.

While the first season provided a lot to digest for those of us interested in how difference and otherness operates on this genre, season two has expanded on this theme in major ways and brought disability front and centre. From a disability standpoint, the ‘broken’ Fitz we saw early in season two provides a lot to think about. The Fitz we meet early in season two is a man struggling to process information, relate to others, and work in the same way he had prior to his brain injury. While I was hesitant at first about his story line, as it seemed to drudge up some old clichés where disability and storytelling are concerned (his conversations with an imaginary Simmons, his anger at other characters for taking his place etc.) I have been pleasantly surprised with how his story has evolved.

In the first half of the second season, the writers used his journey to illustrate how he deals with these changes. While he now has trouble finding the right words (it turns out imaginary Simmons in part helps fill these gaps), and he becomes overwhelmed when others rush him, the audience comes to see that he is still a valuable and contributing member of the team. The way his teammates and friends respond is equally interesting. Different characters respond differently, some see him as broken, some feel responsible and want to take care of him, some continue to hope he will return to who he was before, and some remain awkward in his presence. Through his burgeoning friendship with Mac, a new character, Fitz in not bound by who people remember him as being, but instead allowed to explore a different way of doing things with Mac’s encouragement, support, and through the use of technology. We even get a great scene where Mac recognizes the pressure of a rushed and chaotic environment for Fitz and has other SHEILD scientists leave to accommodate Fitz’s working needs. While this isn’t how Fitz worked before the accident this is how he effectively works now. He is not broken – just different.

Two people looking at a computer tablet. On the left is an older African american man dressed in a flannel shirt. He is pointing at something on the tablet. The smaller white man is on the right looking at the tablet as well.

Whether it is intentional or not, the writers have given Fitz the space to come to term with how his brain functioning differently and adapt to this. The team members who knew him before struggle to adapt to this difference, and this creates a more nuanced plot. Yet, what is most important for me is how his value to SHILED was not dependent on him being ‘fixed’ or ‘cured’ but instead through a more complex process that required everyone to adapt to a new way of working together. His place on the team, even when he struggled and isolated himself, remained. Through this story arc then it is not about Fitz ‘getting better’ but instead becoming better by adapting and learning to do things differently. Indeed, by the mid-season finally Fitz and his scientific contributions are again an invaluable part of the team and their missions.

This seasons driving question for all characters (what will they become?) speaks to how change is being used to shape the characters and build new and emerging abilities. While there is no telling where the second half of this season will take us, there is incredible promise in the way this season is framing difference, change, and disability and I hope the writers continue to build on this and showcase the value in being different.


Image of a woman with brown hair in a pony tail. She is smiling and wearing sunglasses.

Jihan Abbas is a researcher with both personal and professional experience in the area of disability and equality rights and the former Director of Policy and Research for Independent Living Canada. Her research interests include disability and the labour market, social policy, and the inclusion of persons with disabilities. She is also one of the inaugural winners of the Vanier Canada Graduate Scholarship and am currently completing my PhD at Carleton University in Ottawa.

Blog: http://communityresearcher.blogspot.com

Twitter: 

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 the Disability Visibility Project  wants your story! Are you a professional with a disability who has noticed the positive changes of the Americans with Disabilities Act, yet realizes there is still work to be done to meet the objectives of the law?  Are you a student with a disability who has something to say about how society looks upon people with disabilities?  Are you a person with a disability who has the support of an organization or government service that allows you to live a full, independent life?  Are you a person with a disability, but have never really thought of yourself as “disabled”, but you realize that there are things like full access to public transportation that allow you to live the life style you choose?

We hope you are willing to discuss challenges you have faced and tell your individual story of success.  You and a person of your choice can reserve a spot to tell your story.  The person accompanying you will act as the person conducting the interview and, in general help keep the conversation flowing.  You and your story are the focus of this conversation.  Your story will be archived in the Library of Congress.  What you have to say is important!

We are delighted that the great people at StoryCorps in Chicago (located at the Chicago Cultural Center, 78 East Washington Street, Chicago, IL 60602) will reserve two days, April 11 and May 7 for people with disabilities from the Chicago region to tell their story.

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.

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/

The Disability Visibility Project is proud to partner with ADA 25 Chicago in recognition of the 25th Anniversary of the Americans with Disabilities Act.  For more information, go to www.ada25chicago.org

Image that says in large letters in purple and magenta: ADA 25, the second row says: "Chicago" in gray lettering and the last line in purple and magenta are the words: "Program Partners

 

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