What is the challenge to having a disability? By Lorre Leon Mendelson

What is the challenge to having a disability?
Lorre Leon Mendelson

April 13, 2015

What is the challenge to having a disability? Nothing. People I’ve met with disabilities don’t view disability as problematic or something to overcome unless told so by others.  We are not brave or courageous by definition of disability. The problem is not social reaction to us, the challenge is reaction to disability. Rather than recognized for our academic, athletic or professional accomplishments; we are celebrated or disparaged for perceived differences.

One person who is blind is often asked, how long have you been blind, can’t you see anything? can you sign your name?  joking about his blindness to him. In a gathering few come over to say hello to him. Why? We believe eyes are the “window to the soul.” What happens when people:
  • Cannot make eye contact to connect with others? Isolation.
  • Cannot access businesses because of steps and are told it it is “grandfathered in” so don’t have to make a change.
  • Disclose a psychiatric diagnosis and treated as pariah’s for fear they will be dangerous.
  • People with intellectually disabilities’ marriage is in the health section instead of wedding announcements.
This is a sampling of the indignities people with disabilities face daily. What can you do to change the forecast? STOP thinking of us as different, less than or more than and your behavior will follow. Check with disability and deaf communities to see what accommodations you will need to provide not if you need to.
Make the dream of the Americans With Disabilities Act a reality.
On April 15th, the ADA Legacy TourBus will be at the Kennedy Center at Vanderbilt at 110 Magnolia Circle for a 25th Anniversary Celebration of the Americans with Disabilities Act. The ADA Legacy Tour will be there from 9:30 to 11:30 a.m. The Tennessee Disability Coalition and the Middle Tennessee Center for Independent Living and the Vanderbilt Kennedy Center hope to see you on April 15, 2015!  (April 15) from  1-3 pm at the East Park Community Center on Woodland Street

 

Sincerely,

Lorre Leon Mendelson

Disability Warrior, Educator, Author, Advocate, Artist

lorreleon@bellsouth.net

 

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: Pat Puckett, Atlanta, GA

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 May 14, 2012:

Pat Puckett of Atlanta, GA speaks about the systemic problems and causes of the institutionalization of people with disabilities.

Pat acquired her physical disability when she was infected with polio at an early age; she has advocated for disability rights throughout her life, including engaging in civil disobedience with ADAPT. She currently serves as executive director of the Statewide Independent Living Council of Georgia.

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

White man in a black ski jacket. He is wearing a helmet against a snowy background. Another person in a helmet is sitting behind him.

Guest Blog Post by Avi Golden

Avi Golden doesn’t sit still.


A few years later, Avi traveled to Israel for two years to initiate studies in biology. While there, he also furthered his passion in emergency medicine by becoming certified as an Emergency Medical Technician (EMT). This choice was to dramatically shape his life later. 
Avi came back to the US to complete his Bachelor of Science in Biology at Towson University, in Maryland. By the time he graduated in 1998, he was well on his way to pursuing a career and a life that he loved. In the years that followed, he garnered even more credentials as an EMT.This allowed him to work as an emergency medical technician and paramedic in many different and exciting capacities. These included that of a Critical Care Paramedic, a Certified Flight Paramedic, a Rescue Technician, and in the allied roles of firefighter, hazmat (hazardous materials) operations and weapons of mass destruction technician and a paramedic with Magen David Adom in Israel. Life was good.In early June 2007, at 33 years of age, Avi was admitted to Columbia Hospital, in New York, for surgery on an mitral valve prolapse (MVP) repair that was discovered near the aortic valve in his heart. Like many people who go in the hospital for serious, but seemingly routine, surgery, Avi thought he’d be out and recovering in short order.

However, that was not to be. During the surgery, Avi experienced a stroke on the left side of his brain, leaving him with right-sided paralysis, and profound aphasia, which proceeded to wreak havoc with his life.

Avi remained in Columbia Hospital for two months and then was moved to a rehab hospital in the North Shore – Long Island Jewish Health System – for two more months of intensive in-patient rehabilitation. By early October, he was discharged, and began outpatient therapy at home (which he still receives for his arm and leg).

During his stroke rehabilitation, Avi received “traditional” physical, occupational and speech therapies, but he also utilized a rich mix of non-traditional therapies that included acupuncture, massage, tai chi, yoga, constraint therapy, water therapy, computer games and special speech software. Avi also tried using a Neuromove™ device on his right side.

Avi still has balance problems, and weakness on the right side of his body, but it’s his Expressive Aphasia that frustrates and confounds him more than any of his other post-stroke residuals. Avi can understand what people are saying to him and he can still read quite well.

However, he continues to have a lot of trouble speaking and writing, both of these being reflect problems with expressing himself. This can be devastating for any friendly and outgoing person, let alone a certified paramedic who needs to communicate accurately and effectively to do his job.

Avi refuses to let aphasia get in his way. He still works (and volunteers his time) as a paramedic and, more importantly, he’s embarked on a new mission of “aphasia advocacy,” educating others about aphasia and how it impacts a stroke survivor’s day-to-day life.To make this new goal a reality, Avi has been involved in a lot of aphasia-related projects. Like the myriad of activities in his pre-stroke life, he’s done so many things since his stroke that it’s impossible to list them all. Still, here are some of the things that Avi considers to be his greatest achievements:An article published about him for the Aug 13, 2010, edition of the “Jewish Standard” newspaper. The article, entitled “Got _______? Aphasia: At a Loss or Words,” was the featured cover story.From Nov 2008 through the present he’s been an active contributor to the “Aphasia Awareness Training for Emergency Responders Project,” for the National Aphasia Association.

Assisted with outreach efforts to police, firefighters and EMTs in NY and NJ, by participating in their training sessions, and working on the creation of a curriculum, and materials, used in their training programs.

In August of 2012, played the role of “Tevye” in a production of “Fiddler on the Roof” before an audience of 500 people at the Adler Aphasia Center in Maywood, NJ.

Served as an Aphasia Consultant on two plays: 1) From May through June, 2009, for the production of “Night Sky,” in New York City, and 2) In September, 2010, for the production of “Wings.”

Since 2009, has volunteered his time at the Adler Aphasia Center, where he participates in the educational training of medical residents, medical students and other health care professionals who are preparing for a career in a medical field.

Avi says that his stroke hasn’t fundamentally changed him. He’s still the same sociable, affable, and compassionate person that he was before his stroke. He is eager to help others in need and devoted to his job as a paramedic. He has even more projects in mind for the future. For one thing, he would like to expand on his aphasia awareness efforts by becoming a “motivational speaker” to hospitalized patients in the North Shore – Long Island Jewish Hospital system.

“I tell them anything is possible,” he said. That philosophy might help explain how — after suffering a stroke during a medical procedure some 7 l/2 years ago — he was able to graduate from wheelchair to cane to unassisted walking. And if his arm is not back to normal yet, it’s not for lack of trying.

Twice a week, Mr. Golden can be found at the Adler Aphasia Center in Maywood, going from activity to activity, distinguished both by his energy and by his kippah. Though he has appeared in each of the center’s theatrical productions, he seems to have cemented his reputation there with a star turn as Tevye in last year’s “Fiddler.”

“I like to perform,” he said.

The center is also where he recruits some of his sports buddies. He doesn’t ask them to do anything he hasn’t done himself.

“After my stroke I was afraid to go to Six Flags” adventure park, he said, but he knew he had to go to overcome his own fears. Otherwise, he would not be able to ask others to do the same.

Now, when he invites members of the center to go, say, skydiving — he has gone twice — he can tell them his own story. So far, he has enticed dozens of local participants.

“Come stretch your boundaries,” Mr. Golden tells them, urging them to “expand your horizons after becoming disabled.”

His outdoors program — which engages in activities from nature walks to white, water rafting — is targeted to people who live with a wide range of disabilities, including those who have had strokes, spinal cord injuries, amputation, or sensory impairments. The program partners with other organizations, and adaptive equipment is available when needed.

Mr. Golden, who was raised in Lubbock, Texas, had been fluent in both English and Hebrew. He is determined to recapture both languages.

To do this, he generally spends about 15 hours a day engaged in some kind of speech therapy.

“My mother was born in Jerusalem,” he said. “I still understand Hebrew, but I can’t read, write, or speak it now.”

As for English, “I can understand everything but I can’t get the words out,” he wrote in the PowerPoint presentation he has prepared to help him explain aphasia. He noted that a review of his EMT manual showed that aphasia rates only one mention — not nearly enough, he said.

Mr. Golden also is engaged in volunteer work, assisting paramedics at two New York hospitals and visiting stroke patients at North Shore Hospital and Long Island Jewish Hospital.

He said that after someone has a stroke, he or she may be tempted to retreat. “I tell them not to give up,” he said.

Since Avi is still able to enjoy two of his favorite sports, snowboarding and horseback riding, it’s no surprise that he would also like to start a not-for-profit organization (that he’s dubbed “NYC Outdoors Disability”). It would promote snowboarding, horseback riding, hiking, hand cycling, sailing, scuba diving and other outdoor activities for people with disabilities. Based on Avi’s “track record” so far, it’s a sure bet he’ll succeed with both goal.


Avi Golden

I am a 41 year old stroke and aphasia survivor. I was a NYC paramedic and about to start medical school when I had a stroke. Prior to my stroke, I loved many different outdoor sports like horseback riding, kayaking, sailing, bicycle riding, snowboarding, etc. Now, post-stroke I have aphasia (difficulty communicating) and can’t use one arm, but I still enjoy many of the same thrilling activities. I want to help people with different disabilities (i.e. amputees, stroke survivors, people with MS and sensory impairments, etc…) in a group call NYC Outdoors Disability also experience exhilarating outdoor activities. Read more below!NYC Outdoor Disability
nycoutdoorsdisability.com
Facebook: https://www.facebook.com/groups/nycourdoorsdisability/?ref=br_rs
We are dedicated to organizing fun trips for ourselves in the NYC area – expanding our horizons after becoming disabled. From easy nature walks to thrilling sports like rock climbing and scuba diving, these adventures include people with strokes, SCI, amputation, and sensory impairments, etc.

We partner with various organizations to bring you outdoor activities, and adaptive equipment is available when needed. The sky’s the limit, so join us for some adventure, where you’ll find confidence, encouragement, excitement, inspiration, and joy through outdoor activities and sports.

Concept art of Daredevil: Drawing in black and white of a metal fire escape ladder on the left and on the right is the profile of a man dressed in black with a blindfold, his hand is dripping red with blood. He is perched on a building. In the lower-middle portion of the image are the words: MARVEL DAREDEVIL

Daredevil Live-Tweet with DVP 4/10/15! #DaredevilDVP

“There are other ways to see”

All ten episodes of Marvel’s Daredevil will be on Netflix starting April 10, 2015. If you have a Netflix account, the Disability Visibility Project invites you to join us in our first live-tweet/viewing of Daredevil, Episode One on April 10, 2015, 5 pm Pacific/8 pm Eastern.

To participate:

  • Follow the Disability Visibility Project on Twitter: @DisVisibility
  • Before the live-tweet, log in to your Netflix account and make sure you don’t have any problems playing Episode One of Daredevil
  • Open a separate window on your device/computer to access Twitter
  • At 5 pm Pacific/ 8 pm Eastern follow the tweets from @DisVisibility
  • The live-tweet will begin when you see the tweet: “PRESS PLAY, Episode One, Daredevil”
  • Watch Daredevil and join the conversation on Daredevil and disability by tweeting using the hashtag #DaredevilDVP
  • After Episode One, stay on Twitter and let’s talk about the accessibility of Netflix, disability representation, and our impressions of Daredevil so far.

Any questions? Email Alice: alicat155@gmail.com

“Marvel’s Daredevil” is a live action series that follows the journey of attorney Matt Murdock, who in a tragic accident was blinded as a boy but imbued with extraordinary senses. Murdock sets up practice in his old neighborhood of Hell’s Kitchen, New York where he now fights against injustice as a respected lawyer by day and masked vigilante at night.

Image of a smartphone with the display showing the StoryCorps App. The display says: StoryCorps, Swipe to get started.

New StoryCorps App & the Disability Visibility Project

The DVP received a few questions from people about the new StoryCorps app that is now available on the iTunes App store and from Google Play store. If you are interested in using the app, here are a few things to keep in mind:

  • Yes, you can record your story for the Disability Visibility Project using the StoryCorps app as long as you add the keyword “Disability Visibility Project” before you publish your recording online.
  • If a participant using their StoryCorps app makes recording public (in the settings), it will be searchable on the app by keyword such as “Disability Visibility Project.”
  • All recordings made from now until April 2015 on the StoryCorps app will be archived at the Library of Congress. These recordings will be in a separate archive from the stories recorded in the StoryCorps booths. There is a possibility the Library of Congress will archive these stories past April 2015 but it is not definite yet.

For more information about the StoryCorps app:

https://storycorps.me/about/

Please see the Frequently Asked Questions section for more details on the how the app works and what is involved:

https://storycorps.me/faqs/

This is a wonderful opportunity to collect even more stories about the disability experience thanks to StoryCorps!

Screenshot of the America in Transition website. On the upper right corner are the words 'American in Transition' in the center is a photo of a group of white individuals of different ages at an outdoor party with a center transgender figure smiling and making an a-ok sign with their hand. On the upper right corner are the words, "An interactive multimedia map featuring unheard trans stories." In the lower half of the screen are three icons in the shape of circles: the one on the left is an image of the United States, the one in the center is a trans person smiling and the third circle on the right is a book with an arc above the book.

Media Partner #86: America in Transition

It’s all about solidarity and supporting the stories of all diverse communities! We are proud to have America in Transition as our latest media partner. From their website:

America in Transition is web series, interactive multimedia map, and mobile app featuring the stories of transgender people across the United States. America in Transition will focus on intersectional identities, highlighting unheard stories through 5-7 minute documentary portraits from 8 regions in the US. It will portray the lives of 24 people in 24 places talking about formative experiences. Meet people from all walks of life and learn about how their environments—supportive, rural, educated, religiously fundamental—have shaped who they are.

Website: http://americaintransition.org/

Facebook: https://www.facebook.com/americaintransition?ref=br_tf

 

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.