All posts by ldrattell

December 2017 Letter to Our Supporters

Dear Friend,

Board members and volunteers. From left to right: Michelle Yook (board member), Stacey Hughes (volunteer), Nancy Eddy (board member and secretary), Eric Drattell (volunteer), Nancy Hammons (volunteer), Linda Drattell (board member and president), Ervin Berry (volunteer), Andria Campos (volunteer), Victoria Munoz (past board member), Elizabeth Grigsby (board member and treasurer). Missing board members: Austin Esposito-Vigil and Julie Rems Smario

The Bay Epicenter of Advocacy for the Deaf and Hard of Hearing (BEADHH), a 501(c)(3) nonprofit organization (EIN 47-5295266), supports the aligned systemic advocacy efforts of local deaf and hard of hearing individuals and organizations. BEADHH aims to share best practices from top local advocates, and promote unified advocacy efforts.

Since its inception, BEADHH has accomplished the following:

  • Launched an information-rich website, beadhh.org, which serves as an advocacy toolkit: lists of laws, guide to resources, informational posts, sample advocacy letters, class action lawsuit guidelines, and interviews with local advocates.
  • Created a Facebook page to alert to local community in real-time about developing advocacy efforts: https://www.facebook.com/search/top/?q=bay%20epicenter%20of%20advocacy%20for%20the%20deaf%20and%20hard%20of%20hearing
  • Co-planned a two-day event, “Enough Is Enough – Collaboration for Change Conference.”
  • Drafted a letter co-signed by eleven state-wide deaf and hard of hearing organizations to the California Senate requesting that SB 562, the Healthy California Act, include communication access in all healthcare settings. Language interpretation and translation services were subsequently added to the “benefits” section of SB 562.
  • Collaborated with other organizations to request scoreboard captioning and captioning on concourse television screens at the Golden State Warriors games. The Warriors agreed to include captioning in their new arena.
  • Sent a letter to the California Public Utilities Commission detailing what deaf and hard of hearing Californians require for communication access during an emergency, in reaction to the lack of access to emergency evacuation warnings during the Northern California fires. Emphasized communication access in both emergency preparation and disaster response.
  • Spoke on behalf of Californians who are deaf and have other disabilities at a state-level public meeting sponsored by the California Department of Developmental Services. Emphasized insufficient communication access, deaf client support, training for deaf staff, and lack of transparency regarding DDS funding of services for deaf clients.

 

Please support BEADHH with a tax-deductible gift, whether it is $10, $25, $50, or any other amount will help BEADHH in its mission. Your gift will enable us to continue and expand this important collaborative work in the following ways:

  1. Maintain and update the BEADHH website
  2. Collaborate with other local organizations to provide presentations and conferences
  3. Cover related costs in our efforts for systemic change

 

To donate, please print and send the following information and your check payable to BEADHH to:

 

Elizabeth Grigsby

BEADHH Treasurer

1391 Le Havre Court

Livermore, CA 94551

 

 

Name___________________________________________________________

 

Address_________________________________________________________

_________________________________________________________

 

Donation Amount___________________

Check Number     ___________________

 

OR

 

Donate through the donation page on the BEADHH website: http://beadhh.org/donations/

We here at BEADHH wish you and your families a warm and healthy holiday season.

 

Linda Drattell

BEADHH President

BEADHH Board Comments at Department of Developmental Services (DDS)Public Meeting regarding DDS Reducing Purchase of Service Disparities

In Oakland on Monday, November 6, Nancy Eddy, Julie Rems Smario and myself (Linda Drattell) spoke on behalf of California residents who are deaf and have other disabilities at the first of three state-level public meetings sponsored by the California Department of Developmental Services (DDS)regarding DDS Reducing Purchase of Service Disparities.  According to Nancy Eddy, both BEADHH board member and executive director of Deaf Plus Adult Community (DPAC), “The numbers that DDS uses to determine if there is a disparity of services between groups shows that regional center consumers who are deaf receive more than their share of services.  That means [DPAC] cannot even apply for funding available to provide better/more services to our group…  I’ve pressed for more detail on how the money is spent for deaf consumers but they always claim that their systems are not detailed enough to go deeper and truly understand the expenditures.  At the same time, there is only one group home in our two counties that has accessible language.” The DDS intends to hold these meetings to consult with stakeholders, including consumers and families, advocates.  Testimony was given by deaf and disabled consumers and family members, who criticized the DDS for failing to provide services, poorly communicating how to use the complicated DDS program, and lack of response from regional centers that are tasked with carrying out the DDS program. Nancy Eddy testified regarding the needs of the deaf and disabled population, the absence of services, the lack of available professional training in ASL for deaf staff at DPAC, and the need for a deaf group home and ASL training of existing group home staff to provide communication access for deaf and disabled group home residents. Julie Rems Smario, another BEADHH board member and President of California Association of the Deaf, reminded the panel that the Deaf Community is vibrant and has a culture and language that need to be respected. As BEADHH President, I asked for transparency regarding the data they provide – there was no explanation as to how they supported the various disabled populations, for example – and regarding their expenditures, and reminded the panel that under the ADA and Unruh they are required by law to provide services for everyone –  they cannot assert that one disabled group has “used up” their allotted portion of their budget. I also stated that it was unacceptable that the panel had no idea why there were disparities between the groups they served (presented as ethnic populations only), and requested that one way to better study the problem was to record in-depth notes to reflect the testimonies they were hearing from the audience.

The following is Nancy Eddy’s testimony in its entirety to the DDS:

“Good morning. My name is Nancy Eddy. I’m a parent of a 31 yr. old daughter who is deaf and has developmental delays. I also am the director of a local vendorized program for adults who are deaf and have disabilities. For 30 years, I’ve been advocating in one way or another for this small, underserved group of regional center consumers.

I say ‘underserved’ but when DDS looks at the POS rates for deaf, this group is not included in those with disparities – purchase rates for services for deaf are not below average and are often on the high side. I’ve asked RCEB how this can be – where is the money going and for what kind of services – but haven’t received a response. Could it be the cost of ASL interpreters? Interpreters are not provided very often so it doesn’t seem like that should be the reason and other groups need translators as well. Could it be transportation? The program I run in Fremont has had consumers that come from as far as San Francisco, Richmond, Brentwood and Salinas so transportation is a factor but not for everyone. I’m also curious about how DDS counts consumers who are deaf, hard of hearing or deaf/blind. In 2015 I pulled numbers from DDS Facts & Stats and found that statewide the percentage of consumers with a diagnosis of hearing impairment was 5.89% of consumers; at RCEB it was 6.73%. However, RCEB cannot locate that number of consumers. That makes me question the validity of the DDS statistics.

The reality for consumers who are deaf is that most do not have access to communication – they are language deprived, neglected. Many learned some form of signed communication in their youth but, as adults, are placed in group homes with no signed communication. They go to day programs with minimal, at best, communication. They have fewer job placements in the community because they need job coaches who can communication with them. Others just stay home because of the lack of services in their local areas. And other consumers who are deaf were not given signed communication growing up so they are just considered non-verbal and frequently have behavior challenges.

Deaf Plus is the only provider of services in the entire Bay Area that provides accessible communication for consumers who are deaf and have behavior challenges! That’s why some commute such distances. Others just want accessible language and work opportunities. DPAC has only been open for 5 years. The change we see in consumers within a short time is astounding. They often come to us with low language and high behaviors. As they learn sign language and have a way to express themselves, their behaviors decrease markedly. They are able to join in activities and function well and feel included. Even minimal language is so much better than using ‘behaviors’ to communicate. In June, we opened a supported employment program and have already worked with 13 consumers in finding competitive jobs with signing job coaches. Several consumers who were already in the work force but had job coaches who could not communicate with them were transferred to us and are now more stable in their placements. Already, we have a waiting list.

There are few other programs that provide accessible communication to consumers who are deaf. Actually, RCEB is rich in resources compared to other regional centers in the Bay Area. And still there is nothing in Contra Costa County. Nothing in the SARC catchment area. I’m not aware of any programs on the Peninsula or in Marin County.

And yet, DDS does not consider services for the deaf to be a disparity! I’d love to open a program in Contra Costa or San Jose but without access to funding, it’s impossible. Group homes with fully accessible communication need to be developed specifically for consumers who are deaf, but there is no funding available for that either. The funding for disparity in services needs to be opened to provide services to the deaf.

My daughter has good communication in her apartment with supported living and attends DPAC with full communication and is in the process of searching for competitive employment with the help of a signing job coach. That is why I’m in this business. I want to see that for everyone who has communication needs. I’d also like to retire but I can’t do that until I’m sure that access will continue to be available for my daughter.”

Background and Related Law

The Americans With Disabilities Act (ADA)

The ADA regulations in 28 CFR, §35.149, Discrimination Prohibited, explain that qualified individuals with a disability may not be excluded from participation or denied benefits of a public entity’s services, programs or activities — nor be subject to discrimination — because a public’s entity’s facilities are inaccessible or unusable by individuals with disabilities. This means that the deaf and hard of hearing must be able to access the City’s and County’s services provided to others, regardless of cost.

Title II

Title II Statute:

Title II applies to state and local governments, and directs that no individual with a disability shall “be excluded from participation in or be denied the benefits of services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.” 42 U.S.C. §§ 12131(1)(A), 12132.

Title II Regulations:

Title II directs that public entities “shall take appropriate steps to ensure that communications with applicants, participants, members of the public, and companions with disabilities are as effective as communications with others.” 28 C.F.R. § 35.160(a)(1).

Public entities must “furnish appropriate auxiliary aids and services where necessary to afford an individual with a disability an equal opportunity to participate in, and enjoy the benefits of, a service, program, or activity conducted by a public entity.” 28 C.F.R. § 35.160(b)(1).

Title III

Title III Statute:

Title III applies to private entities, and directs that “[n]o individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation.” 42 U.S.C. § 12182(a).

Effective communication is crucial in achieving equal access. Discrimination by public accommodations under Title III includes “a failure to take such steps as may be necessary to ensure that no individual with a disability is excluded, denied services, segregated or otherwise treated differently than other individuals because of the absence of auxiliary aids and services . . . . ” 42 U.S.C. § 12182(b)(2)(A)(iii).

A “public accommodation” includes businesses that are generally open to the public and that fall into one of 12 categories listed in the ADA, such as restaurants, movie theaters, schools, day care facilities, recreation facilities, and doctors’ offices. 28 C.F.R. § 36.104.

Title III Regulations:

Places of public accommodation must “furnish appropriate auxiliary aids and services where necessary to ensure effective communication with individuals with disabilities.” 28 C.F.R. § 36.303(c). Interpreting, closed captions, and hearing loops are all established auxiliary aids and service, and provide an “effective method of making aurally delivered information available to individuals who are deaf or hard of hearing.” The auxiliary aid used depends on the communication needs of the population served.

The Unruh Civil Rights Act

The Unruh Civil Rights Act (California Civil Code Section 51) protects individuals from discrimination by all business enterprises in California: these include housing and public accommodations, and makes discrimination illegal due to a person’s age, ancestry, color, disability, national origin, race, religion, sex and sexual orientation.

Letter to the Deaf and Disabled Telecommunications Program of the California Public Utilities Commission

Letter to the Deaf and Disabled Telecommunications Program of the California Public Utilities Commission

Reina Vazquez

DDTP Committee Coordinator

rvazquez@ddtp.org

 

Barry Saudan

CCAF CEO and CPUC Liaison

bsaudan@ddtp.org

 

Dear Reina Vazquez and Barry Saudan,

The Bay Epicenter of Advocacy for the Deaf and Hard of Hearing (BEADHH) would like to work with you to ensure efficient and effective communication of emergencies to the deaf and hard of hearing communities in California. Public safety is not being currently optimized, as was seen during the recent Northern California fires where deaf and hard of hearing residents were not aware of the phone calls made to alert communities to evacuate so as to avoid the deadly and quickly spreading fires. As a result, most deaf and hard of hearing residents were among the last to receive notification of the fires, and escaped within minutes of their homes being consumed by flames. The form of fire notification typically came from neighbors urging their deaf neighbors to escape. This is unacceptable. There must be an emergency warning system that provides improved up-to-the-minute life-saving communication between emergency responders and deaf and hard of hearing residents.

  1. It is important to prepare for emergencies ahead of time so that appropriate warning and communication systems are in place.
  2. Emergency notification and communication systems need to be varied and redundant. During the Northern California fires, only phone calls were made to alert residents of the imminent fire danger. Instead, messages should be sent in as many ways as possible. Current technologies – which include phones, TTY, SMS, email, videophone, radio, television – as well the development of new technologies should be employed to send multiple simultaneous alerts.
  3. Ensure proper interfaces are interoperable and connected to enable the processing of all types of emergency contact for call routing and handling
  4. Provide broadband service and acquire necessary related equipment to Public Safety Answering Points (PSAPs)
  5. Implement a program to register residents who are deaf and hard of hearing with the local police and fire departments, if not already existing, and actively promote this registration program.
  6. Provide training programs for first responders to learn how to help and communicate with deaf and hard of hearing residents to ensure effective communication with these individuals.
  7. Provide training for first responders to effectively implement the varied emergency communications capabilities such as voice, text and data mentioned above.
  8. Ensure the availability of accommodations as recommended under the Americans With Disabilities Act. These accommodations include qualified sign language interpreters, CART, and assistive listening devices as well as other auxiliary services.
  9. Update current emergency communication systems to follow Next Generation 9-1-1 protocols to receive and deliver emergency information through varied communication systems such as text messaging.

The most recent data from the National Center for Health Statistics shows that approximately 10 percent of US residents are deaf or hard of hearing. According to the Public Policy Institute of California, there are slightly more than 39 million people residing in California. That means approximately 3.9 million or more California residents are deaf or hard of hearing and unlikely able to obtain emergency information via the phone or use a phone to contact the police.

It is crucial that California residents who are deaf, deafened, deaf-blind, or hard of hearing have access to emergency services. This is critical during times of disaster –  weather-related crises, earthquakes, as well as personal situations –  when people require access to emergency services.

I therefore strongly urge you to take the necessary steps and commit the requisite resources to enable residents of California to have effective emergency communication services with PSAPs.

Sincerely Yours,

Linda Drattell

BEADHH President

AMC Theaters Out of Compliance with Settlement to Provide Closed Captioning Equipment

Important email from John  Waldo, Wash-Cap attorney and lead attorney on the 2011 AMC Settlement with Association of Late-Deafened Adults for the provision of closed captioning equipment in their movie theaters. Please read and help if possible by notifying him of problems receiving captioning equipment when going to the movies at AMC theaters (email johnfwaldo@hotmail.com):

Dear Colleagues,

I’m writing this to my deaf and hard of hearing friends in the San Francisco Bay area to seek your help and participation in an important project.

As you know, through years of litigation, some settlements and finally, federal regulations, the major movie-theater chains are now offering personal caption-viewing devices that enable us to see pretty much any movie at every showing. (I know it’s not a perfect solution — lots of us prefer open captions displayed on the screen — but what we have is a whole heck of a lot better than what we had before). The problem, though, is that way too often, the devices don’t work as promised.

The AMC chain, which is now the largest theater chain in the country, appears to be the worst offender. AMC offers the CaptiView devices that are attached to flexible goose-necks with a heavy base that fits into the cup-holders. We’ve received reports from around the country that the devices frequently fail to display the captions, or in some situations, collapse physically. Sometimes, the staff can fix those problems, but because the pre-show materials are not captioned, any problem with the device usually doesn’t show up until the actual movie begins, which means that we have to disturb other patrons and often miss a chunk of the movie to alert staff to the problem.

AMC personnel generally try to deflect the blame, and sometimes say things like the movie does not come with captions. AMC then usually offers free passes to another show. thinking that will take care of the problem.

None of this should happen. When the devices are properly maintained and tested, and when the staff knows how to operate the devices, they are highly reliable. We have good circumstantial evidence of that because the Landmark chain, which operates a lot of “art-house” theaters, also uses the CaptiView devices, and their operations appear to be essentially flawless. It’s a function of management that cares.

AMC had been equally sloppy about maintaining the equipment used to provide audio descriptions to people with visual challenges. A couple of years ago, some blind individuals and organizations filed a California statewide class-action lawsuit against AMC seeking to remedy the situation. What came out of that was a settlement that required AMC to undertake a rigorous maintenance and testing protocol, to ensure that staff was trained to operate the devices, and to provide audio descriptions for some of the pre-movie material so that any problems could be detected prior to the start of the movie.

I’m working with some of the San Francisco attorneys who brought the audio-description case against AMC, and we want to achieve a similar result with the captioning equipment. Our objective is to ensure (to the degree humanly possible) that when we go to a movie, we’re actually able to enjoy it rather than be told, essentially, “come back another time.”

We need your help to make this happen. What we need is for a bunch of people in the Bay Area to go to a movie at AMC, to ask for the caption-viewing equipment, and to report back on whether the equipment works without any problem. If everything works fine, you see and understand a movie. If it doesn’t, you provide us with an opportunity to improve AMC’s performance.

I understand that in some parts of the area (like San Jose), people have had so many bad experiences with AMC that they avoid going there. I get the reluctance. But on the other hand, we can’t fix this if we can’t demonstrate that the problem exists, and that it is more than just an isolated, one-time deal.

I earnestly hope that some of you will undertake this challenge. As you know, federal and state disability laws have the potential to make the world an accessible place for those of us with hearing loss, but it’s basically up to us to make the laws work. We can’t let an industry leader like AMC simply ignore its obligations to us. And while these problems have been reported in a number of areas of the country, we think for a number of reasons that we want to address this in the Bay Area.

I’ll happily answer any questions or respond to any comments, and hope we can get this project rolling in the near future.

Oh, and please pass this along to any of your deaf or hard-of-hearing friends and colleagues.

John Waldo

Advocacy Committee Chair

Association of Late Deafened Adults (ALDA)

Advocacy Director and Counsel
Washington State Communication Access Project — Wash-CAP
www.wash-cap.com

Counsel
Oregon Communication Access Project — OR-CAP

CALIFORNIA DEAF AND HARD OF HEARING ORGANIZATIONS FROM ACROSS THE STATE ASK CALIFORNIA STATE SENATORS TO INCLUDE INSURANCE COVERAGE FOR SIGN LANGUAGE INTERPRETERS AND CAPTIONERS AS PART OF THE SINGLE PAYER HEALTH CARE BILL, SB-562

 

In a letter dated May 4, 2017, eleven deaf and hard of hearing advocacy organizations from across the State asked the California State Senate to amend SB-562 to include insurance coverage for communication access in all health care settings for deaf, late-deafened, hard of hearing and deaf-blind patients. Under SB-562, known as The Healthy California Act, California would be the first state to establish a single payer insurance plan.

Deaf and hard of hearing Californians require communication access to receive informed and appropriate medical care. The federal Americans with Disabilities Act (ADA) requires public and private medical providers to ensure effective communication access for their deaf and hard of hearing patients. This communication access includes providing appropriate auxiliary aids and services such as qualified interpreters and captioning.  However, providers who offer communication access are the exception rather than the rule.

Some medical offices have policies to provide interpreting or captioning services, nevertheless, their staff are woefully unaware of such policies and refuse to call for services. Others profess ignorance of the law and the process for obtaining communication access services. The lack of effective communication in medical care increases the risk of medication errors, wrong procedures, avoidable readmissions and medical malpractice.

Approximately 15% of American adults (37.5 million) ages 18 and over are deaf or hard of hearing. Youth between the ages of 12-18 need communication access at their healthcare appointments as some are not comfortable with their parents present. All of these deaf and hard of hearing individuals require interpreters, captioning services, or auxiliary communication access services to receive appropriate medical care.

Enforcement of the ADA’s communication requirements is difficult and almost non-existent. Most people are not interested in filing a lawsuit against their doctor or hospital; they just want to be able to communicate effectively with their doctor and participate in their own medical care.

The Healthy California Act offers a unique opportunity to enable deaf and hard of hearing patients to take control of their treatment if the law is extended to require that insurance cover communication access.

These organizations from across the State signed on to the letter asking the State Senate to include communication access as part of SB-562:

Association of Late-Deafened Adults

Bay Area Asian Deaf Association

Bay Area Black Deaf Advocates

Bay Epicenter of Advocacy for the Deaf and Hard of Hearing

California Association of the Deaf

California Coalition of Agencies Serving the Deaf–

— Deaf Community Services of San Diego, Inc.

— Deaf Counseling, Advocacy & Referral Agency

— Deaf & Hard of Hearing Service Center, Inc.

— Greater Los Angeles Agency on Deafness, Inc.

— NorCal Services for Deaf & Hard of Hearing

Northern California Association of DeafBlind

We have asked for an in-person meeting with Senator Ricardo Lara, Chair of the Senate Appropriations Committee and co-lead author of the bill, to further discuss the requested amendment for universal insurance coverage of communication access.

For further information, please email info@beadhh.org.

My Presentation at the Vuxendövas Nordiska Råd (VDNR) Nordic Council of Deafened Adults

By Linda Drattell

A path with a raised white line for the blind leads from the Hoje Taastrup train station to the Danish House of Disabled People’s Organisations (Handicaporganisationernes Hus). We are in a suburb of Copenhagen. The Handicaporganisationernes Hus is a circular building with walls curved inward as if they have been pinched into an asterisk of sorts, rounded edges on the outside and meeting together in the middle. The pinched sides have been designed as wings, each one a different color for the simplicity of finding a particular office. Each wing has its own designated safe space: a fireproof stairwell/elevator that has its own ventilation system and electricity in the event of a disaster. Lights blink slowly so as not to affect those who suffer from epilepsy. This is a building that has been built on the philosophy of equal opportunity accessibility, and whose designers have learned from the designs of other buildings around the world and from the lessons of 9/11. This is the venue of the VDNR Nordic Council of Deafened People’s Seminar to which I was invited.

The VDNR Nordic deafened communities held their annual meeting on May 20, and a seminar on May 21, 2016. The purpose of the meeting on the 20th was to discuss projects and share information pertaining to those who are late-deafened and hard of hearing in the Scandinavian countries: Denmark, Sweden, Norway, Finland, and Estonia. Saturday’s seminar was organized by topic, such as the psychosocial impacts of becoming late-deafened, political perspectives in Denmark, inclusion into society in general, and so forth.

VDNR has two members/representatives/delegates from Nordic countries. They are encouraging Latvia, Estonia, Iceland and the Faroe Islands to join VDNR (it is questionable whether the latter two will join since their populations are so minimal in size and therefore there are few deafened people). Two Estonian guests came this year and provided a report at the annual meeting. Two additional deputies to the Finnish delegates also attended the meeting, one of whom is Liisa Sammalpenger, an ALDA member.

Liisa had invited me to attend the seminar since I was living just under two hours flight time away in London. I was looking forward to just attending the seminar on Saturday and learning from others. I was in for a surprise.

Seminar presenters included Aida Regel Poulsen, Secretary of the European Federation of the Hard of Hearing, who gave an informative speech, providing data about the percentage of deaf/late-deafened/hard of hearing/deaf-blind people in the UK (15.6%) and in Denmark (16%). These figures are comparable to the United States estimates (15%). Aida also reported that while deafened people are included in equality planning by various laws, in practice they are excluded due to lack of proactive planning, emphasis of “reasonable adjustment,” and lack of confidence by those requesting accessibility. This, too, resonates with what we experience here in the States when we repeatedly see a lack of accessibility despite the fact that we have moved from, as Aida put it, being “objects of charity” to individuals with human rights.

Other speakers spoke about bilateral implanting, the training and employability of deafened people, whether work areas should be made accessible, the lack of accessibility in government meeting locations, and the greater need for automated Speech-To-Text and its difficulties in processing dialects.

Strategies were also discussed, such as the Norwegian Hard of Hearing (HLF) focal points at the policy level, community level, and corporate level. Decision-makers generally depend on success stories from the media. These stories create an illusion that being hard of hearing or deaf is not so bad, or that cochlear implants are a miracle cure. As a result much-needed supports are not provided.

I arrived in Hoje Taastrup, a suburb of Copenhagen, on Friday afternoon, May 20, and began receiving messages from Liisa and from the Chair of the VDNR, Trine Gaarsdahl, asking when I would be arriving at the meeting that day. Instead of just attending Saturday’s seminar as planned, I was informed that the VDNR would like me to share information about my work with BEADHH, ALDA (Association of Late-Deafened Adults), DCARA (Deaf Counseling, Advocacy and Referral Agency), and local advocacy efforts at their Friday meeting. I hurried over to the meeting and was told that I could have 15 minutes to speak. As it turned out, the meeting ran over time and I was asked if I would mind presenting for 15 minutes on Saturday instead – they would find a place in their schedule to add me. Given that I had no expectation to present at all, I was perfectly fine with this. Sure, I said.

How did you communicate, you may ask? Given there were people who spoke Danish, Finnish, Estonian, Swedish, and Norwegian – well, everyone seemed to know English! We could not hear each other very well, though, and for that the Nordic community had an answer. More on that in a minute!

On Saturday morning, at breakfast, I was informed that the opening speaker was sick and would I mind presenting for the hour she was to have spoken, opening the seminar. A bit rattled, I said that was fine, but what would they like for me to talk about? I was told to speak about myself and the topics they mentioned earlier. A full hour? Oh my.

I started peppering people with questions at breakfast, which they took to be small talk, until they noticed I was jotting down notes on a piece of folded paper. An interpreter/captionist (I’ll explain momentarily) asked me if I wanted to follow the conversation or just work on my speech. I was genuinely embarrassed, but explained that if I were to give a speech I would need to know what was of interest to everyone. I put the paper away.

So how did we understand each other? Fascinating thing about interpreters in the Nordic countries: an interpreter is trained to provide sign language interpreting (whether it is Danish, Finnish, Swedish, or Norwegian Sign Language), but can also take an additional year of training to type on a QWERTY keyboard for captioning (Speech-To-Text) on the spot or as you go – either in these languages or in English, whatever is needed. English and German are taught in each of these countries as second languages.* Some interpreters are trained to caption only. One of Liisa’s interpreters was trained both in sign language and captioning. Others present were trained just to caption or sign. Liisa’s interpreters captioned in English when I was present, for which I was very grateful.

The keyboard is carried around along with a screen such as that of a tablet (or even your smartphone will do) and can be propped up anywhere to facilitate conversations or presentations, such as on the table in the restaurant. For a guided tour, or while standing in groups, the interpreter balances the keyboard and tablet on a makeshift pad that is held in place against the abdomen by over-the-shoulder straps so that the interpreter can type while standing and the captions are readable as we walk around. For a large meeting, such as the seminar, a large screen is used.

The captioning effort tended to be slow and there were mistakes, but this might have been because a) more than one person was speaking, b) more than one language was being used, such as Danish and Finnish and then both interpreted into English for the captions, or c) use of the QWERTY keyboard. Or all three. Regardless, having the captions in this portable way enabled conversations that would have been impossible to have otherwise. One exception was the captioning of the seminar and Friday meeting into Swedish by two brothers, one of who would translate and speak the words in Swedish through a makeshift tube into his brother’s ear, who then typed the captions in Swedish. I was told that the dual effort by the brothers ensured Swedish captions that were live, with minimal mistakes.

The Norwegian speaker I replaced had planned to speak about the psychological consequences of hearing loss. I was not a specialist in clinical psychology as she is, but I did know firsthand the psychological consequences of hearing loss! I was also told that the audience did not expect statistics but were interested in how BEADHH, ALDA, DCARA, and local advocacy efforts worked. I explained how we help each other cope and thrive. I opened the seminar with a discussion about what it was like to become deafened (stages of grief, feeling isolated, relationships challenged), and how ALDA, with its philosophy of “Lost: My Hearing, Found: A Family” and motto of “Whatever works!,” rises to meet the needs of those who are deafened. I shared information about the Cinemark Theaters lawsuit and settlement, of which I was one of two individual plaintiffs and ALDA was the organizational plaintiff. I shared stories about ALDAcon – how precious newcomers are to us and how we creatively find ways to include them. I told them about ALDA’s Karaoke Night, use of balloons, line dancing, workshops, and using whatever modes of communication work for the individuals who attend. I shared ALDA’s philosophy of humor, such as in our stories written for ALDA News. I explained how ALDA started and how captioning began as ALDA Crude. When I finished my presentation, Liisa joined me and gave a presentation about ALDAcon in Arizona last year.

I explained how BEADHH was working to provide local advocates and would-be advocates the information they need to pursue their advocacy goals. Too many times I, as an advocate, had to search for applicable laws and guidelines to help me in my work. This was an effort that was duplicated with each time I approached an organization or government entity requesting functional equivalent access. I founded BEADHH to make the act of advocating for oneself easier by providing the resources one needs all in one place.

After the presentation, two members of the audience commented to me that they were inspired by the various organizations’ efforts to support advocacy and by ALDA’s use of humor.  I was told after my presentation that it was obvious I had given this speech several times. I said no, I just loved talking about my work. I didn’t need to rehearse.

What was I most impressed with at the seminar? Well, a few things. First, the interpreter/captioning role, that the interpreter becomes captioner as the situation warrants. And that captioning could be mobile, using a portable keyboard and tablet.

Second, I was impressed with the government support of interpreters/captioners in Nordic countries. I came to find out that in Finland the government pays for unlimited communication access in the workplace and other venues such as attending a seminar, volunteering, and social events. Two interpreters/captioners flew to Denmark with Liisa, their expenses paid for by the Finnish government. In Sweden, you have to have documented costs and argue to get this kind of support; communication access is based on fixed employment or seeking a job in order to qualify for 20 hours of interpretation services per week. But this support is still provided by the government. In some instances in Sweden the employer has agreed to pay for the communication access. In Denmark the situation seems to be better, but the various Danish municipalities offer differ levels of support. Still, Trine Gaarsdahl mentioned that in Denmark she has unlimited hours of interpreting at her place of business.

And third, I was impressed with the Handicaporganisationernes Hus itself. From the holes in the plywood barriers to make them light weight and see-through, to the naturally lit rooms that emphasize the use of daylight and open space, this is a place where all can find the greatest accessibility. Jesper Boesen, the owner and consultant of No Barriers Advice, was heavily involved in the building of this accessible building and provided the tour. The challenge faced in its design was to provide for all disability groups in the same building. Compromises had to be made so it is not optimized for one particular group, yet it is one of the most – if not the most – accessible office buildings in the world. The reason for its success is that the designers and architects listened to all of the disability organizations to make the right compromises and solutions. The organizations, for their part, focused on articulating their demands and needs – not on the solutions themselves. Jesper emphasized that it is not always easy to agree on solutions, but it is easier to agree on needs. So the architects were provided with the problems to solve and they solved them. Additionally, it was not enough to say that each group wanted accessibility. For example, a ramp may be the ideal image of accessibility but if you need to make a detour or take the back route to get to it then it isn’t right to think of the ramp as accessible. Therefore in the design of this building accessibility had to be equated with equal opportunity. To help the engineers gain insight, they were put into wheelchairs, wore goggles that gave them tunnel vision, wore earplugs and were blindfolded. Then they were taken 200 meters away from the meeting facility and were told to get back into the room. As a result, everything from the fire escape to parking spots were designed with equal opportunity, openness, and respect. And it was built at a cost that was a little less than an average office building at the same time.

I want to thank Liisa for inviting me to the VDNR Seminar. It is always a wonderful thing to share information and see how others create solutions for the accessibility issues that face us all.

* Some of the spoken and written languages are quite similar and can be understood by each other. There are different sign languages in the Nordic countries; interpreters do not know neighbouring countries’ signs. Swedish and Finnish signs are approximately 50% the same because they have the same base since the 1800’s. Swedish is the second official language in Finland, as Finland was previously under Swedish rule up until 1809, and those from Finland will tend to use Swedish when speaking with people from other Nordic countries.

This was the second time the VDNR seminar was held in English so that it would be accessible to other Europeans.  Last year the seminar was held in English in Estonia. Two years ago the seminar was held in Finland, using Finnish and Swedish. Prior to this the seminar was not open to others, just for the Council members.

For more information please feel free to contact Linda at linda@beadhh.org.

 

 

Local Live Theater Captioned!

With thanks to Carrie Levin and the Assoiation of Late-Deafened Adults. The following is a message from Carrie:

TheatreWorks has finally agreed to open caption their live theatre performances in both venues:  Lucie Stern Theatre in Palo Alto, and Mountain View Center for Performing Arts.  I worked several months with attorney John Waldo whom I give credit for his diligence in working with staff of theatreWorks to make this happen.

We, ALDA SJ, have obtained vouchers for four (4) season tickets for all productions starting March 2016 to July 2017 – for free.  This includes the remaining 2015/2016 season and all of the 2016/2017 season.  Priority given to ALDA SJ members, then open to other late deafened/HOH folks. Vouchers are first come first served basis.

The process in obtaining these tickets are as follows:

1-  Check TheatreWorks’ open captioned performances for 2015/2016 season:

http://www.theatreworks.org/shows/venues/

tokyo fish story:  March 27 at 2pm and 7pm; March 30 at 2pm (Lucie Stern*)
Cyrano: April 24 at 2pm and 7pm; April 27 at 2pm  (MVCPA)
The Velocity of Autumn: June 19 at 2pm and 7 pm; June 22 at 2pm (MVCPA*)

Open-Captioned Performances in the 2016/2017 Season:  – dates TBD

http://www.theatreworks.org/shows/1617-season/

*Venues:

Lucie Stern Theatre, 1305 Middlefield Road, Palo Alto, CA  94301-3354

Mountain View Center for the Performing Arts (MVCPA), 500 Castro St, Mountain View, CA  94041

2-  If interested, notify me at carriejlevin@gmail.com and provide the following so I can send the vouchers to you:

full name

email address

tel/text

Name of production

performance date and time

number of vouchers

3-  Upon receipt of the vouchers, you will need to personally contact TheatreWorks box office yourself either by email boxoffice@theatreworks.org or 650-463-1960. When reserving tickets, you need to give them:

full name

address

voucher number(s)

Name of production

performance date & time

4- On day of performance, bring vouchers and present them at Will Call in exchange for the tickets.  Enjoy the show!

 

Mayor’s Office on Disability Announcement

BEADHH logo

MOD Communication Access Flyer

Announcement from the San Francisco Mayor’s Office on Disability:

From: “MOD,  (ADM)” <mod@sfgov.org>
Date: November 5, 2015 at 11:42:15 AM PST
To: “MOD,  (ADM)” <mod@sfgov.org>
Subject: Join us for a conversation about Communication Access Rights
on November 19, 2015 ; 5:30 P.M. – 7:30 P.M ;  San Francisco Public
Library Koret Auditorium

Dear Colleagues,

Join staff from the San Francisco Mayor’s Office on Disability (MOD)
and the Main Library’s Deaf Services Center for a conversation about
communication access rights for the Deaf & Hard of Hearing
Communities. We want to hear from the Deaf & Hard of Hearing
Communities about the specific barriers they face!  We hope you can
join us and spread the word!

Please find attached the event flyer. Details for this special event
follow:

Date: November 19, 2015
Time: 5:30 P.M. to 7:30 P.M.
Location: San Francisco Public Library, Koret Auditorium

American Sign Language (ASL) and Real Time Captioning (RTC) will be
provided. If you need additional accommodations to participate,
please contact Nathan Webb at 415-554-6789 or nathan.webb@sfgov.org.

Sincerely,

_______________________
Mayor’s Office on Disability
1155 Market Street, 1st Floor
San Francisco, CA 94103
www.sfgov.org/mod
415. 554-6789 Voice
415. 554-6159 Fax
415. 554-6799 TTY

Enough Is Enough – Collaboration For Change Conference

ENOUGH IS ENOUGH COLLABORATION FOR CHANGE

Workshops for Deaf, DeafBlind, Hard of Hearing, Late-Deafened communities and advocates.

PART 1 Captioning: Your Rights and Advocacy

When: Friday, October 23, 2015

Where: Ed Roberts Campus (Ashby Bart) 3075 Adeline Street Berkeley, CA 94703

Time: 10 AM — 3 PM

*Please Register by Oct. 9* PART 2

VRI: Your Rights and Advocacy

When: Friday, November 6, 2015

Where: Deaf Community Center (San Leandro Bart) 1550 San Leandro Blvd San Leandro, CA 94577

Time: 10 AM — 3 PM *Please Register by Oct 23*

Workshops presented in ASL. CART provided. CDI, DeafBlind Interpreters, etc. to be provided by request.

Register Online: http://goo.gl/forms/pPjENyTtFM ASL

Trouble registering? Try this link here

Video about the workshops:

For more information, please contact Yesenia Roman (510) 267-1200 Yesenia.Roman@disabilityrightsca.org

*USB with workshop materials and lunch provided*

This conference is provided by Bay Epicenter of Advocacy for the Deaf and Hard of Hearing (beadhh); Deaf Counseling, Advocacy and Referral Agency (DCARA); Deaf Hope; Disability Rights California (DRC); Disability Rights Education and Defense Fund (DREDF); Norcal Services for the Deaf and Hard of Hearing

Funding for this conference is provided by DRC.

To view the conference flyer (same information as above) click here: EIE Flyer FINAL91515