Dela, on her wheelchair, taking a walk through Chinatown with a friend
In This Issue
What is a "hidden" disability?
Herb Levine: ILRCSF and Hidden Disabilities
Consumer Story: Invisible Disabilites
Hidden Disabilites: Resources and Links
Speak Out:CA State Budget
Tell Your Stories: An Accessible Marketplace
Economic Empowerment: Disability Job Fair
Call to action: Valentine's Day Rally re Budget Cuts
ILRCSF Benefits Workshop Schedule
Quick Links
Featured Article
What action, if any, do you want your members to take? Add a "Find out more" link to additional information that you may have hosted on your website
Featured Article
What action, if any, do you want your members to take? Add a "Find out more" link to additional information that you may have hosted on your website

The Advocacy Newsletter of ILRCSF

What comes to mind when you hear the word "disability"? For a lot of people it's that placard we see hanging in the windshield of a car parked in a blue zone parking space. You know the one - a cartoon stick figure of a person in a wheelchair. It's the universal symbol of disability - recognized globally. It shows up not only in reserved parking spaces, but by ramps at store entrances, elevators, next to doors that open automatically...pretty much anywhere that accomodations have been made to provide some equity of access. Equity of access is a great thing, but that universal symbol poses questions about disability, and what it means to have a disability.

When we see a person using a wheelchair, it usually means they have a disability. It might be a temporary disability or a permanent one but, most times, a person who is using a wheelchair to get around does have a disability. Not every person who has a disability has some big, shiny piece of assistive technology that any sighted person can spot, though. Most of the people who work at ILRCSF are people with disabilities and the fact is, only a few of us have disabilities that are easy to spot. For most of us, our disabilities are invisible to others. This doesn't make them any less real.

People with hidden or invisible disabilities are protected by the Americans with Disabilities act. People with hidden or invisible disabilites have every right to live, work, study, play and raise families in a fully accessible community.

For this issue of DELA, we asked some people living with or supporting others with invisible or hidden disabilites to discuss their experiences, their feelings, and their frustrations regarding others' expectations when they hear the word "disability." Read their stories, and please share your own experiences with us. 

No community is ever truly accessible unless it's inclusive.
ILRCSF Executive Director, Herb Levine on Hidden Disabilities

I was asked if I would write a few paragraphs about the history of hidden disabilities at ILRCSF.....probably because I have one or two hidden disabilities, myself. Those of us with hidden disabilities pose a problem for people who like their categories in visible containers. They can't see us coming. It's too often the truth that we just don't count - not even to our peers with visible disabilities. 


When I started here in 1980, it was an organization that primarily served people with physical disabilities, and did very little outreach. As the benefits counselor, peer counseling trainer, and services coordinator I brought a focus on getting out to where people are, on offering group presentations as a way of reaching more people, and on being more open to people with hidden disabilities who were, at the time,  the great unserved population at ILP (Note: ILP later became ILRCSF). Their disabilities were hidden, and they were virtually invisible. Most of these were people with psychiatric disabilities. No doubt my own chronic bouts of depression and self-medication with alcohol made these folks my brothers and sisters.


After a few years, when extensive outreach led to a significant increase not only in the number of people we served, but in the types of disabilities we were now dealing with, two foundations that were looking for a site to create alternative mental health services approached us with an offer of funding. Instead of taking the money they offered for this purpose, we asked to use the funds to create a Consumers Speak conference and let consumers with psych disabilities say what they wanted.


In my work in the community I had met many consumers and mental health activists. Tapping into these networks, I put together a steering committee that met regularly. It was a wonderful process and one that truly embraced the Independent Living philosophy: anyone could come and say their piece but only consumers who had attended at least 2 meetings had a vote. This group planned every bit of a conference that drew over 300 people to Fort Mason, featured a variety of workshops, and provided a quiet space and peer support for those for whom it became too much for a while. The professionals and govt. folks who were present sat at a table at the front of the large room - not to direct anything, but to listen and ask questions about the consumer feedback that came from the workshops - workshops that were facilitated by consumers.


Today, ILRCSF is San Francisco's only cross-disability organization operating within the Independent Living framework. I'm proud of this. Too often, those of us with hidden disabilities are a considered a "problem." We make others feel uncomfortable. Those among us with psychiatric disabilities pose a special "problem" for those who need everything in neatly labeled packages.  Some people think we are "not truly disabled." That day at Fort Mason, almost 30 years ago, marked the moment when we drew a line in the sand: our disabilities may be hidden or even invisible, but we won't be.

Lee H., Support Person, on Living with a Loved One With an Invisible Disability

Despite pressure from medical professionals who thought they knew what was best for her, Lee's mother - a woman with multiple physical disabilities -  chose to remain in her own home. Over the years, the family made changes and additions to the house to accommodate her growing needs, and different types of assistive technology made it possible for her to bathe herself, dress herself, enjoy books and movies, and participate in every aspect of family life. Lee spoke to us about what it felt like being a support person for someone livingwith hidden disabilities.

First of all, Mom never "hid" any of her disabilities. Until she started using a wheelchair full-time her disabilities were issues that no one would know about unless she told them. She never hid the truth about her disabilities from anyone, but she didn't shout about them from the rooftop, either. Just because a person has a health problem or a disability it doesn't mean they're no longer entitled to privacy, right? The way I think about it, Mom told the people she wanted to tell. It wasn't really anyone else's business. She didn't owe anyone an explanation.


I guess it was about ten or eleven years ago that the DMV gave us the okay to park in the parking spaces for the disabled (Note: The family was granted a placard that could be used to park in designated spaces when the person with a disability was a passenger.) I'd drive mom around a lot, and we got lots of dirty looks from people, especially at the shopping mall. Some people think if you don't have a wheelchair van or whatever, that you're just being lazy or taking advantage. Those people who gave us dirty looks? They had no clue and, really, it wasn't any of their business. But it used to make me angry because I knew that my mother definitely had disabilities and that accessibility was a real issue for her.


It's funny how all of that changed so suddenly. I don't remember anyone giving me a dirty look for parking in the disabled parking area once Mom became a full-time wheelchair user. It's like they thought she was faking it unless she used the chair all the time.  





Hidden Disabilites: Resources and Links



Our friends at sent us this article that appeared in Psychology Today. In it, Pia Savage, who is also a RedRoom author, writes about a little-known disability called Non Verbal Learning Disorder (NLD.) Pia's story really illustrates how quick some people can be to judge. 


The people at pubished this useful article about Invisible Disabilites that includes links to specific disabilities that are hidden or invisible.


This pamphlet has valuable information for students with hidden disdabilites. It discusses civil rights and protection under the law.


This article about people with hidden disabilites in higher education settings is especially interesting, as it includes up-to-date information about the recent Americans with Disdbilites Amendment Act.


A great resource about Assistive Technology for people with hidden disabilities. Note: this resource is in PDF format. Consumers may request alternative formats from the publisher.


For people who working in Independent Living Centers: Working With People With Psychiatric Disabilities. A great resource guide that promotes full nclusion.

The San Francisco Mayor's Office on Disability has kindly  made the following contact details available for consumers who wish to  make their voices heard regarding the State budget.


3rd State Senate District:

Senator Mark Leno - 3rd District  -- Marin and east part of SF

District Office: (415) 557-1300


9th State District:

Senator Loni Hancock - Alameda County


There is information posted on the MOD Website regarding budget impacts at:  

District Representative for Disability Issues
 Ph: 510 286-1333 
More detailed maps


Governor Jerry Brown

8th State Senate District:
Senator Leland Yee - 8th District -- San Mateo and western part of SF
District Office:  (415) 557-7857 

Consumers With Disabilities: Share Your Shopping Stories

The Equal Rights Center (ERC) wants to hear from people with disabilities about their shopping experiences at retail stores!  Have you had difficulty shopping because of

Accessibility problems? 

Narrow aisles? 

High counters? 

Entrances with stairs? 

Inaccessible point of sale machines? 


Are there stores you avoid because you know they are inaccessible?  If you have experienced these or other access problems, please contact the ERC Disability Rights Program today at (202) 234-3062 or email 


The Equal Rights Center is a national non-profit civil rights organization dedicated to promoting equal opportunity in housing, employment, disability rights, immigrant rights, and access to public accommodations and government services.  The ERC engages in cutting edge investigation techniques and is one of the few organizations in the United States which, when necessary, engages in comprehensive civil-rights enforcement for all protected classes under both federal and local law.  Each year, the ERC advances civil rights and helps thousands of individuals through a comprehensive approach including counseling, civil rights testing and investigations, and education and outreach activities.





Save the Date!

EPA Region 9's 2011 Disability Job Fair


EPA is seeking talented people with disabilities who have an interest in HUMAN HEALTH, ENVIRONMENTAL PROTECTION and ENVIRONMENTAL JUSTICE.  We seek people who have degrees in ENGINEERING, PHYSICAL SCIENCE, BIOLOGY, CHEMISTRY, ENVIRONMENTAL MANAGEMENT/SCIENCE and ENVIRONMENTAL STUDIES, who would like an opportunity to gain professional workforce experience in our San Francisco, California Regional Office. 


When: February 18, 2011


Where:                EPA Region 9 - San Francisco Office

                75 Hawthorne Street

                San Francisco, CA 94122


Who: Individuals with disability who qualify for Schedule A hiring (


Everyone including assistants and interpreters must register to enter the job fair. Register online in January on the EPA Region 9 site. For e-mail updates about the upcoming job fair please send an e-mail to Philip Kum:


If you require Reasonable Accommodations at the job fair, please contact Terisa Williams: or (415) 972-3829





This following is a message from Planning for Elders. ILRCSF staff and consumers plan to join them at the rally. We hope to see you there!


The local budget battle begins now. We will have songs, theatrics and a massive display of senior power.


(Meet on the Polk Street Steps)

We are facing another round of massive cuts to senior and disability services.
IHSS and SSI and others are being hard hit by the State budget

We want our elected officials to represent us and not to break our hearts. The supervisors and mayor have been given the Senior and Disability Budget Pledge to
sign. This pledge shows that they are willing to fight for and represent the concerns of our community. Come with us to collect these Pledges. We will be holding a massive display of power and collecting the (hopefully) signed forms from each and every supervisor and mayor.

Let's educate the new and old supervisors to let them know that we want them to represent the needs of our communities.

Seniors and people with disability have a right to live in the community with the services they need. Our Homes not Nursing Homes!

Sponsored by Planning for Elders Health Care Action Team
Call James at (415) 703-0188 ext 304 for more information

ILRCSF Benefits Workshop Schedule


ILRCSF offers two different workshops on benefits:


1. Basic Benefits Overview


2. How Employment Affects your Benefits - for those on SSDI &/or SSI


All workshops are on Thursdays at 9:30am. However, only one topic - basic benefits or employment -- is covered each Thursday.   Please attend the workshop that best suits you; for example, if you need information about applying for SSDI, SSI, Medi-Cal or other benefits, come to the Basic Benefits Overview workshop.  If, on the other hand, you already receive SSDI or SSI and are considering going to work, come to the workshop entitled How Employment Affects Your Benefits. At this Employment Workshop you will learn how to use work incentives to keep some of your benefits as you transition into a job, as well as how to use the PASS program, and Ticket to Work. To hear the schedule of upcoming workshops, call 415-543-6222 ext. 155.


Upcoming workshops:





Feb 10                    How Work Affects Your Benefits - for those on SSI &/or SSDI

Feb 17                    Basic Benefits Overview

Feb 24                    How Work Affects Your Benefits - for those on SSI &/or SSDI




Mar 3                      Basic Benefits Overview

Mar 10                    How Work Affects Your Benefits - for those on SSI &/or SSDI

Mar 17                    Basic Benefits Overview

Mar 24                    How Work Affects Your Benefits - for those on SSI &/or SSDI

Mar 31                    Basic Benefits Overview


NOTE: ILRCSF is wheelchair accessible and provides reasonable accommodations upon request. In order to be fully accessible to all people with disabilities, ours is a scent-free office.


When visiting ILRCSF, please do not wear any scented products, including perfumes, aftershave. hairspray, etc.

The Independent Living Resource Center San Francisco is a 501(c)3, not-for-profit organization. Donations from the public support our mission to ensure that people with disabilties are full social and economic partners both within their families and within a fully accessible community.
Tax deductable donations may be sent to:
649 Mission Street, 3rd Floor,
San Francisco, CA 94105.
Donate securely online via Network for Good  
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