February is visually impaired awareness month so I chose to write about a very interesting project being announced today by a number of organizations and companies.
Spotlight Gateway, announced today by a number of blindness organizations, a large pharmaceutical company and Bookshare intends to provide an iPad to every underprivileged child who is either blind or low vision first in the US and ultimately globally. It’s starting with a limited number of iPads but plans on expanding its reach over time. The press release announcing this project is pasted verbatim at the bottom of this article.
Am I just publishing a press release without any additional information? Has Gonz Blinko turned into one of those news services that do nothing but take statements from interested parties and republish them with little or no changes? Not at all.
This article describes the history behind how this project came to be and how Dr. Howard Kaplan with a tiny bit of help from me brought Spotlight Gateway from concept to reality. Oddly, the press release issued by all of the giant organizations left Dr. Kaplan’s name out of the story entirely, I find this unacceptable as he did all of the heavy lifting to get an iPad to all of the kids who will enjoy them but was refused credit by the big boys
Howard and Me
I first heard the name Dr. Howard Kaplan when he sent me an email through the contact form on this site. His email said he had a new iOS app designed which low vision users could employ to read books called SpotlightText. I read the email and replied with a cranky response basically saying that every nitwit with anything that might be related to vision disabilities writes to me and that most are jokers with some half assed bit of technology and that I hadn’t time to waste on yet another bit of crap that nobody would ever use.
Howard is a really persistent guy. After about a dozen emails going back and forth, he convinced me that his app was indeed special because it is the first and only piece of software ever written in the low vision space that is based on the actual science of how people with retinal and other disorders can best read text. I’m a science enthusiast and his arguments were very compelling. Thus, I agreed to our first phone call, one that would lead him to bring me on as something of a publicist for SpotlightText and to help him with introductions and the like so he could better navigate the highly opaque world of accessibility.
One of the introductions I made for Howard was with a senior accessibility professional at Apple, they met at a conference and he planted the first seeds of Spotlight Gateway in the minds of the people who make the hardware on which his app runs.
I wish I could say that I had done a lot of work to push this project forward but, in fact, the introduction to Apple people was the last really valuable contribution I had made. When Howard called me after his meeting with Apple he explained the idea and I said, “You’re trying to get a free iPad for every underprivileged blind or low vision kid in America? You’re out of your freaking mind.” Howard said, “I think we can do this.” I told him I would help in any way I could but that I believed it to be a quixotic pursuit. That’s right folks, the dreamer in me had been overcome by cynicism from watching important projects start and fail in this space and my role was as Sancho Panza to Howard’s Quixote.
About six months ago I witnessed a turn in the tide about Spotlight Gateway as Howard had kept me abreast of his progress and it was then that I said, “Boss, I think you got something here.”
Why Howard Kaplan?
Howard is a full time retina surgeon with offices in downstate New York. He had a little kid as a patient and discovered that no access technology existing previously was compatible with how this child could actually see. Personally offended that one of his patients was about to face a childhood without books, Dr. Kaplan spent roughly $100,000 out of his own pocket to have SpotlightText developed and released onto the iOS AppStore.
Then Howard took the promotion to a higher level. He worked with me to get the story to people in the blindness business as that’s where my contacts live. Howard took on the task of convincing the American Academy of Ophthalmology (AAO) to endorse a technology product for the first time in its long and austere history. Then Howard did the same with Foundation Fighting Blindness (FFB) who also for the first time in its history endorsed a technology solution of value to its constituents.
At CSUN 2016, Howard Kaplan, Sina Bahram and I shared the stage on a panel I had proposed called “Building Bridges.” We had intended to discuss how Howard was working to bring the medical community to technological solutions built by people on what we will call the accommodations side of the discussion. Historically, the medical people didn’t talk to access technology people who in turn never talked to scientists about how their users could better benefit from information buried in research they never even tried to read. We got the “CSUN Death Slot,” Friday at 4PM and literally everyone in the audience were either friends of mine, people who wanted to meet any of the three of us on the panel, a former patient of Dr. Kaplan’s and literally nobody else. We were planning on announcing what would ultimately be called Spotlight Gateway in rather general terms but felt doing so in front of such a tiny audience would have no great value and we just talked about and demoed the SpotlightText app instead.
Medicine Versus Accommodations
Before Dr. Kaplan built the bridges between AAO, FFB and SpotlightText, organizations that work on medical solutions for blindness ignored the access technology world entirely and the access technology industry ignored the medical people. There wasn’t hostility between the two camps but nor was there any cooperation, communication or any contact of substantive value.
Why Did This Divide Exist?
If you’re a regular reader of this blog, you would know that I’m on the accommodations side of the discussion. I help people make software of value to people who are blind today. We accommodation people look at the here and now, the kids in the schools, blind people in universities, blind people in professional settings and blind people at home. Our work is hopefully temporary, we all want to see medicine find cures but we realize that blind people today need technology to fully participate in 21st century life.
Many ophthalmologists view things quite differently. When a patient comes to a retina specialist with RP or some other disease that causes blindness and has no cure currently known to science, they feel an enormous sense of failure. It’s the job of these highly educated and highly skilled people to save their patient’s vision and when they cannot, it’s an emotional nightmare for these doctors. As nobody on the accommodations side of the discussion ever even approached organizations like AAO or FFB, they in turn didn’t approach us either and a chasm has existed for decades.
Howard The Hub
When you read the press release below, you will see that Spotlight Gateway is supported financially by a big pharmaceutical company, will be administered by The Lighthouse For The Blind And Visually Impaired Of San Francisco (SFL, an organization for which I’ve grown a tremendous amount of respect over the past year), Lighthouse Guild International (LGI) and the members of VisionServe Alliance.
How did all of these groups find each other in a world where medicine never talks to the technology people and vice versa? The answer is plain and simply Howard Kaplan. While I may have greased the wheel a little, Howard is the hub in the middle holding all of these spokes together. He took the step from the medical model and had SpotlightText made and, as far as I can tell, became the first person to bridge the gap between the medical community and those of us who work on access technology.
Beginning with his meeting with Apple at that conference nearly two years ago, Howard has been putting block after block into place and has built the bridge we’ve needed in the blindness world for decades. As I wrote above, I thought this project was a fantasy, an impossibility and that Apple would never cooperate. I must have told Howard he was insane at least five dozen times. Howard proved me wrong and below you can read the press release in full. I typically include a conclusions section at the end of my articles but I’ll put the single conclusion for this article here: Howard Kaplan has made history by getting Spotlight Gateway as far as it is today and he has built the all important bridge between medicine and accessibility and everyone in our community should send him a thank you for doing so.
The Press Release
OnLine Library Available Free to Eligible Students Who Are Visually Impaired
Lighthouse Guild and Bookshare® Announce New Program Offering
Half a Million Digitized Books Free to People with Print Disabilities
American Academy of Ophthalmology, LightHouse for the Blind and Visually Impaired, and VisionServe Alliance, Work in Partnership on Important Initiative
New York, (Feb. 1, 2017 ) – Reading is a simple pleasure. However, millions of people are denied the joy of reading due to vision loss. Now, Lighthouse Guild and Bookshare®, are collaborating with the American Academy of Ophthalmology (AAO) to provide greater opportunities for students with low vision or print disabilities. They are working in partnership with LightHouse for the Blind and Visually Impaired in San Francisco and the members of VisionServe Alliance, who provide services throughout the United States for individuals who are blind or have low vision. The new program will use an application known as Spotlight Gateway to expand access to print materials specifically designed for people with low vision.
“Reading should not be a privilege,” said Mark G. Ackermann, Executive Vice President and Chief Operating Officer of Lighthouse Guild. “Books document our history, mark our present and inspire our future. We’re pleased to join in establishing this program to break down barriers and open a world of possibilities to students who are visually impaired.”
Rebecca Alexander, author, psychotherapist, fitness instructor, and extreme athlete who is almost completely blind and deaf due to a rare genetic disorder called Usher syndrome type III said, “I am an avid reader, and I access the extensive Bookshare® library through the Spotlight Gateway app. It has changed my life. I am thrilled this new initiative will allow more people with low vision to expand their horizons and explore new worlds through reading.” Ms. Alexander, author of the book “Not Fade Away: A Memoir of Senses Lost and Found” added, “This is a wonderful program that helps students of all ages with low vision to live as fully and independently as possible.”
Lighthouse Guild is working with the American Academy of Ophthalmology to help ensure that students of all ages with vision loss are made aware of the new program. In order for a student to become a program member, an ophthalmologist must confirm a qualifying vision disability. Once eligibility is confirmed, the ophthalmologist can register the student online through the AAO website.
Since the program requires the use of iPads, Lighthouse Guild in New York City and LightHouse for the Blind and Visually Impaired in San Francisco will distribute a limited number of iPads through participating vision agencies. This will help make the online library available to students who do not have access to iPads. In addition, VisionServe Alliance, which has offices across the country, will provide locations where students can access iPads if they are not in NYC or Northern California.
Bookshare®, a Benetech initiative, is the world’s largest online library for people who are blind, visually impaired, have a physical disability, or a learning disability that interferes with reading, such as dyslexia. “We are proud to partner with Lighthouse Guild to make Bookshare®’s library of over 500,000 books available to individuals unable to read standard print,” said Brad Turner, Benetech’s Vice President of Global Literary. “Organizations like Lighthouse Guild help Bookshare® ensure everyone has equal access to content by expanding our reach into the communities we serve.”
Training and educational sessions will be available at Lighthouse Guild headquarters in New York, LightHouse for the Blind and Visually Impaired in San Francisco, and participating vision agencies. to help patients and their families access, navigate and utilize the library. Detailed videos have also been created and uploaded to YouTube to help participating vision agencies and individuals understand how to access and navigate the expansive library.
Support for the Spotlight Gateway program has been provided in part by a generous grant from Regeneron Pharmaceuticals, Inc.
About Lighthouse Guild
Lighthouse Guild, based in New York, is the leading not-for-profit vision and healthcare organization with a long history of addressing the needs of people who are blind or visually impaired, including those with multiple disabilities or chronic medical conditions. With more than 200 years of experience and service, Lighthouse Guild brings a level of understanding to vision care that is unmatched. By integrating vision and healthcare services and expanding access through its programs and education and awareness, we help people lead productive, dignified and fulfilling lives. For more information, visit Lighthouseguild.org
About American Academy of Ophthalmology
The American Academy of Ophthalmology is the world’s largest association of eye physicians and surgeons. A global community of 32,000 medical doctors, we protect sight and empower lives by setting the standards for ophthalmic education and advocating for our patients and the public. We innovate to advance our profession and to ensure the delivery of the highest-quality eye care. Our EyeSmart® program provides the public with the most trusted information about eye health. For more information, visit aao.org.
Bookshare®, a Benetech initiative, is the world’s largest online library of accessible ebooks for people with print disabilities. Through its extensive collection of educational and popular titles, specialized book formats and reading tools, Bookshare® offers individuals who cannot read standard print materials the same ease of access that people without disabilities enjoy. The Bookshare® library has over 500,000 titles and serves more than 450,000 members. Access to Bookshare® is free for all U.S. students with a qualifying print disability. Bookshare® is an initiative of Benetech, a Palo Alto, CA-based nonprofit that develops and uses technology to create positive social change. For more information, visit bookshare.org.
About LightHouse for the Blind and Visually Impaired
Founded in 1902, the LightHouse for the Blind and Visually Impaired offers programs in six locations in San Francisco and throughout Northern California, annually serving over 3,000 blind and visually impaired individuals annually. LightHouse is the place where blind people come to learn skills to gain confidence and independence. At the LightHouse, people connect with resources, peers and mentors. Every day we prove that with training in Braille, cane travel, and adaptive technology, blind people can live the lives they want as competent and confident employees, students, and community members.
About VisionServe Alliance
VisionServe Alliance, founded in 1987 and now celebrating its 25th year, provides a forum for top executives of private agencies and organizations specializing in blindness, and represents the interests of such agencies before many organizations, professional, governmental and non-profit groups. VisionServe Alliance is the only organization whose members directly represent every aspect of services to people who are blind or visually impaired, including dog guide schools, adult rehabilitation agencies, private residential schools, early intervention and pre-school programs, career placement/employment and manufacturing, membership organizations, advocacy organizations, low vision clinics, and services to those with multiple disabilities. For more information about VisionServe Alliance, visit the website visionservealliance.org or call 314-961-8235.
About Spotlight Text
Spotlight Text, developed by Focus Reading Technology, Inc, is the first eBook reader specifically for individuals with vision loss. For more information, visit spotlighttext.com
About Regeneron Pharmaceuticals, Inc.
Regeneron (NASDAQ: REGN) is a leading science-based biopharmaceutical company that discovers, invents, develops, manufactures and commercializes medicines for the treatment of serious medical conditions. Regeneron commercializes medicines for eye diseases, high LDL cholesterol and a rare inflammatory condition and has product candidates in development in other areas of high unmet medical need, including rheumatoid arthritis, atopic dermatitis, asthma, pain, cancer and infectious diseases. For additional information about the company, please visitwww.regeneron.com or follow @Regeneron on Twitter