Alice Wong, Project Coordinator of the Disability Visibility Project, had a chance to interview her friend Janni Lehrer-Stein on September 25, 2014 at StoryCorps San Francisco.
This is the first of two posts. The following are approximate excerpts from their conversation.
On being blind and using technology
Alice: I guess, would you like to talk a little bit about your background and a little bit about your disability, if you don’t mind?
Janni: No problem. I am a blind citizen. Progressively blinded over the last 35 years due to a congenital disability that is called retinitis pigmentosa or RP. RP gradually diminishes vision, taking first the periphery and then the center and over the last 35 years or so, since I was diagnosed in 1982, I have had the experience of having my vision decrease to the point where it is at the barely functional stage… I have a very limited amount of vision. It’s scatter shot, some in my upper left periphery but although I am able to perceive most shapes, I can also easily miss things that are right in front of me or to the side. And I use a cane to identify myself and assist me on the streets and until very recently I had a wonderful guide dog named Nanaimo who has recently retired to enjoy his old age at home.
Alice: Sweet, sweet Nanaimo, a black Labrador who’s just so loyal, so attentive, and just really attuned to your needs. And in terms of technology, how do you use technology in terms of accessing the internet and all your basic daily needs?
Janni: You know, we’re so fortunate to be living in this day and age because technology is an incredible aid to someone who is vision impaired or nearly blind the way I am. I am able to use smartphone technology because most of the apps that are available are able to be turned on to audio. My computer also reads to me and while the technology is not perfect, it is fairly easy for me to be fluent on my computer, on my laptop…The difficulties are of course that that doesn’t replace vision. And I’m hopeful that as technology continues to evolve so will the assistive technology that enables people like me to fully participate in every aspect of society.
Impact on the ADA for blind people
Alice: How has…the ADA changed or has it made improvements in terms of what you’ve seen in terms of access for people who are blind?
Janni: It’s a very interesting question. You know the great thing about the ADA and the fact that we are almost 25 years into the enactment of legislation, is that it’s almost a seamless part of our landscape. The ADA has really permeated almost every aspect of life education, transportation, health services, employment and when it is properly acknowledged and implemented, it really enables someone like me, with a fairly severe disability, to be fully included and participating in life just the way everybody else is. The same expectations, the same ability to perform, and very closely, very nearly, the same enjoyment level.
Alice: … so I would like to know a little bit of your take on the…misconceptions about the ADA, …what do you think people should know about, in terms of the rights of people with disabilities and that it really is a civil right, but what is your take in terms of your background as a lawyer?
Janni: I guess one of the biggest concerns that I have as a person with a disability in talking about the ADA is just being sure that everybody understands that is very much part of the civil rights movement in America. And maybe the last frontier, but is most definitely a full participant. So just as people have the right to speak freely and to live the lives that they choose, so do Americans with disabilities. And the ADA is simply the vehicle that enables people with disabilities to participate in society as completely as anyone else.
On continued barriers and discrimination
Janni: There certainly have been moments in my life where I have been frustrated by my inability to participate in whatever life function it is that I am seeking to engage in at that moment. Mostly these issues for me involve transportation. Transportation is very difficult for someone who is blind, can not see and can not drive and until very recently there are many barriers to both public and private transportation. I’m hopeful that with the help of technology and with the increased acceptance and implementation at the ADA that many of those barriers will fall away and my life has continued to improve in that respect.
Alice: Yeah and it’s you know, very sad commentary to me I think that despite the ADA being in place for pretty much 25 years that time and time again people with service animals, when they take taxis, they are outright discriminated and refused rides. And this continues to happen…and service animals are continually not allowed in restaurants, and other public places. Even though it’s clearly…stated in a ADA that it should be allowed. So, have you had any encounters like that?
Janni: The guide dog issue is something that has been very close to my personal experience for a long time because I had the great privilege of having a relationship with my dog Nanaimo…[he] went with me just about everywhere as he was entitled to go and as I needed him to do. I don’t think that people truly understand the intense value of being served by a guide dog. The guide dog really takes on the responsibility for your safety…I don’t think that the vast majority of the American public really appreciates the tremendous experience and the value of guide dogs or the extent to which they are true professionals. So many times I would be out in public and someone would ask if they could pet or play with my guide dog because the guide dog is still a dog.
Janni: And looks like an adorable pet, just like so many other adorable dogs. But in addition to that, there have been many times where I have been denied access to a restaurant, to a store, to a taxi, to a bus, because I have a dog with me and I think it is imperative as for long as we are here and we have disabilities we continue to reach out and educate people about their legal rights to have and use guide dogs and encourage the American public to support of those who use guide dogs and get such benefit from their use.
On the recent landmark case on NYC taxi cabs
Alice: And, speaking of transportation and recently through your advocacy and work with Disability Rights Advocates’ major landmark case in terms of increasing taxi cabs in New York City, please tell me a little bit about that experience…and ultimately what happened.
Janni: So Disability Rights Advocates is a nonprofit law firm that operates with its head office in Berkeley and a branch office in New York City. Shortly after the New York City was opened, which was just actually about four years ago, the New York branch filed a lawsuit against the New York Taxi and Limousine Commission because the taxi and limousine commission was both considering what they called the Taxi of Tomorrow to replace the current yellow taxi cab fleet….and also to impress upon the citizens of New York, the Governor and the Taxi Limousine Commission the need to have fully accessible taxi cabs. That litigation went through a number of years. A trial was conducted and Disability Rights Advocates succeeded on their named plaintiff, United Spinal. There was an appeal and a remand back to the… lower court and just very recently, it was actually just last week, an announcement was made that the full impact of that litigation and subsequent settlement has been approved in the state of New York and by 2020 50% of the taxi cabs which are on the streets of midtown Manhattan will be fully accessible to all people with disabilities regardless of what those disabilities are whether it’s mobility or sensory…. I was merely a member of the board of directors encouraging them on…We had a wonderful staff attorney. His name is Sid Wolinsky and he’s a iconic legend in the state bar of California and he was very ably supported by Ms. Julie Pinover, who is head of our New York office.
Janice ‘Janni’ Lehrer-Stein is a member of the Board of Directors of Medical Research Charities — a national federation of research focused non-profits, which solicits and directs employee donations to the Combined Federal and State Campaigns. She is a National Trustee of the Foundation Fighting Blindness and was Chair of the 2010 and 2011 Dining in the Dark dinner in San Francisco, which increased awareness about people with blindness and low vision. A board member of Disability Rights Advocates, a non-profit law firm working to improve access and secure the civil rights of individuals with disabilities, Lehrer-Stein holds a Juris Doctor degree from University of Toronto and a Bachelor of Arts degree from Yale. She was diagnosed with retinitis pigmentosa in 1982 and is legally blind. In her personal capacity she is involved with the DNC and Ready for Hillary!
Alice Wong, is a Staff Research Associate, Department of Social and Behavioral Sciences, UCSF. Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving. Currently, she is the Project Coordinator for the Disability Visibility Project: A Community Partnership with StoryCorps and an advisory board member of APIDC, Asians and Pacific Islanders with Disabilities of California. Alice is also a Presidential appointee to the National Council on Disability, an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy.