Commentary: Is Blindness Really That Scary?

According to a recent survey, most Americans fear blindness. In fact, they fear it more than losing their hearing, speech, a limb or their memory. Nearly 88 percent of people surveyed considered having 20/20 vision vital to good overall health, while 47 percent believed that losing their sight would have the gravest effect on their daily lives. Loss of independence and quality of life were the top concerns for respondents. Over 60 percent were aware of common eye conditions like cataracts and glaucoma.

I have been blind practically all my life, so naturally, my first reaction would be to say that blindness is not as scary as it seems. Growing up as someone who is blind, I have no concept of what it is like to be able to see, and therefore I have successfully adapted to living without sight. Nevertheless, I realize how significant good vision is on people’s everyday lives – if anything, it is the sense used the most by human beings. I lost my sight as a toddler, but I am sure I would have had a much harder time adapting had I lost it as a teenager or adult, for instance.

I think the main reason why most people are so afraid of blindness is because of the tremendous lack of awareness about different ways to cope with vision loss. Today more than ever before, numerous resources and equipment are available to help individuals with vision loss live happy and rich lives. Organizations like The Chicago Lighthouse offer a wide array of programs, services and technologies that allow people with varying levels of vision loss to remain independent. Furthermore, research is constantly being done to both find cures for eye disease, and to help those affected by low vision to better live with their visual impairment.

These findings are not new or surprising – living in darkness is a natural fear humans have had for centuries. This survey only underscores the importance of doing further research on eye diseases, as well as providing more services and resources for people living with vision loss. Unfortunately, many individuals will have to confront this fear in the near future, because the number of people with vision loss in the United States is expected to double by 2050. Although not all forms of vision loss can be prevented or avoided, people can start by taking a few simple steps that will help them keep their eyes healthy in the long run.

For me, losing my memory or being diagnosed with cancer are my worst fears. As someone who has successfully adapted to vision loss, I know all too well that there are far worse things than being blind or having a disability for that matter. There’s no doubt that blindness can present challenges and inconveniences in our everyday lives, but thanks to the countless services and resources available in the United States, it is possible for people with vision loss – like me – to lead equally fulfilling lives. Most of the fears and misconceptions about blindness and visual impairments are surmountable, and we should all work to help people understand that losing one’s sight does not have to mean losing independence.

Congratulations to the 2016 Chicago Lighthouse Scholarship Winners!

Scholarship Group 3_w Board and Management

Last Saturday, The Chicago Lighthouse held its annual scholarship ceremony. Scholarships were awarded to 38 outstanding college students who are blind, visually impaired or have multiple disabilities. Since it was established in 2004, The Lighthouse’s scholarship program has grown into the second largest of its kind in the U.S.  This year, scholarship recipients came from Illinois, Georgia, Minnesota, South Carolina, Massachusetts and Michigan. Students can use scholarship funds to cover tuition, housing, transportation, tutoring and adaptive technology expenses.

This year was my first time attending the ceremony, and like everyone else I was touched and inspired by the remarkable stories and journeys of the scholarship recipients. The keynote was given by Daniela Estrada, who simultaneously studied and worked at The Lighthouse’s UI Health call center to save money for college. She will be attending Cornell Law School this fall to pursue her goal of becoming a lawyer. In her speech, Daniela talked about the many challenges caused by her visual impairment, her mom’s high expectations for her to succeed in school, and her experience immigrating to the United States and getting help from The Lighthouse.

“Never regret searching for the truth and expanding your knowledge because it always pays off in the long run. Pursue your education as fiercely and persistently as you possibly can,” she told the audience.

Lighthouse President and CEO Dr. Janet Szlyk then talked about two innovative Lighthouse programs this summer for young people who are blind, visually impaired and disabled. The First Jobs program provided several teens, who were previously out-of-work, with meaningful employment and practical on-the-job experience at the Mariano’s store in Glenview.  The Summer in the City program brought together several youngsters who are visually impaired to learn more about independent living, orientation and mobility and other skills while experiencing aspects of Chicago’s rich cultural scene. They stayed at the nearby ICRE Wood facility and visited The Lighthouse to meet with key staff.  The teenagers also did such fun things as take a yacht cruise on Lake Michigan and attend a White Sox game.

Lighthouse intern Patrick Andrade spoke eloquently about how working with the Summer in the City teens opened his eyes to the capabilities of those who are blind or visually impaired. Meanwhile, First Jobs participant Elbra Jajou “rapped” about his experience applying for a job and how working at Mariano’s has changed his life.

Scholarship recipient Noel LaRosa agrees. Also in the First Jobs Program, Noel says that working at Mariano’s has been a fun experience that has given him the opportunity to strengthen his skills and independence. Having faced numerous trying circumstances as a child, in addition to his severe visual impairment, has never stopped Noel from pursuing his goals. He is currently a student at Oakton Community College, working towards an Associate’s degree in business. His ultimate goal is to become an architect. The Lighthouse scholarship will allow him to purchase assistive technology that will help him in class.

Noel says he is ready to face all of life’s challenges in college and beyond, and this is his advice to everyone:  “Keep trying, keep working hard and always keep moving forward.”

On behalf of everyone at The Lighthouse and the scholarship recipients and their families, I’d like to thank the generous donors who make the program possible each year. Affording a college education is challenging for many students, and it can become even more difficult for those who are visually impaired due to the additional expenses. Congratulations to the 2016 scholarship winners!  All of us at The Lighthouse wish you the best of luck! Those interested in applying for a scholarship in 2017 can find the application and instructions by visiting this page. Scholarship information is posted during the early spring of each year.

Commentary: On Celebrating 26 Years of the ADA

Today marks the 26th anniversary of the passage of the Americans with Disabilities Act, or ADA. Signed into law on July 26, 1990 by President George H.W. Bush, it forbids discrimination against people with disabilities in public places. This includes restaurants, stores, hotels, transportation and other public places. The commemoration of this anniversary is an opportunity for those of us with disabilities to reflect on how the ADA has helped us, and what still needs to be done. This week, I have compiled my list of top five ways the ADA has helped people with disabilities, and the work that is still left to do to achieve full equality.

  1. Accessible public transportation has made it easier for people with disabilities to travel independently. Audible announcements on buses and trains allow people like me with vision loss to know where we are and when we need to get on or off. Meanwhile, buses and trains equipped with ramps and accessible seating enable those with mobility impairments to use public transportation independently.
  1. Access to public places gives people with disabilities the freedom and independence to go wherever we please. Curb cuts and ramps allow individuals who use wheelchairs to be out and about on the street and enter places like restaurants, stores, school and their workplace. Braille signs on restrooms, elevators and other rooms allow people who are blind to know where we are in a building without needing much, if any, assistance.
  1. The general public is becoming more aware about the capabilities and needs of those of us with disabilities. Prior to the ADA, the lack of access prevented many people with disabilities from going out independently. The accessible environment established after the ADA allows us to be more integrated in our communities, thereby allowing non-disabled people to know us better.
  1. The unemployment rate for people with vision loss has constantly been between 70 and 75percent, and this is also true for people with other disabilities. The ADA prohibits job discrimination, but employers often have unfounded misconceptions about people with disabilities. Although I might be the most qualified candidate for a job, an employer simply might not hire me because I am blind. This is a situation which people with disabilities know all too well. It will take more than a piece of legislation to change these persisting attitudes.
  1. Today’s technologically driven world isn’t always easy for people with disabilities to navigate. ATMs, vending machines and other kiosks found in countless businesses can be difficult, if not impossible, for people with disabilities to use. Not all machines have audio or tactile accessibility features, so I and countless others cannot use them independently. Technology manufacturers can avoid this problem all together by incorporating accessibility into their products from the start.

There’s no doubt that the ADA has been instrumental in providing Americans with Disabilities with more access and countless opportunities. Thanks to this legislation, people like me can go out to events, school and work, just like everyone else. My hat goes off to all the politicians, advocates and persons with disabilities who fought tirelessly for the ADA to become law. There is still much more to do, and we should all continue fighting for a truly accessible and inclusive environment.

How has the ADA benefited you as a person with a disability? Please share your thoughts and experiences with us!

XANADU: A Fun and Accessible Performance!

Sandy at Xanadu

Last Saturday, I, along with several colleagues from The Lighthouse, was treated to a performance of Xanadu at the American Theater Company on Chicago’s north side. We had all heard that the 1980 film starring Olivia Newton-John was not successful, and honestly did not know what to expect from the musical. Truth be told, I was only interested in going after learning that we would take a touch tour of the stage before the performance. Not only did we get to be on stage to see and feel the different costumes and props beforehand, but we also heard from some of the cast members themselves!

Evan Hatfield is the Director of Audience Experience at Steppenwolf Theater Company, and works with many theaters across Chicago to make sure performances are accessible to people with disabilities. This was the American Theater’s first time putting on a touch tour for patrons with vision loss, so they consulted with Evan to learn how to make this possible. We were all pleased to find out that Evan and the staff at the American Theater Company had thought about every single detail, from providing assistance getting into the theater to anyone who requested it to describing in full detail the various costumes and props.

We arrived to the theater about 90 minutes before the performance got started. This allowed us to learn more about the musical from Evan and the theater director. They briefly discussed things like the time setting of the story, stage layout and some of the visual and sound effects that would be used in the play. Next came the part I was waiting for: feeling the different costumes and props! Theater staff members described each item and told us which character would be using it. Finally, some of the cast members introduced themselves and described the characters they would play.

Although I had attended performances with audio description, this was my very first touch tour in a theater. Not that I didn’t know there was such a thing – working at The Lighthouse has allowed me to learn of the many things Chicago theaters are doing to become accessible to people with vision loss.

This was also the first time taking a touch tour for a few of my colleagues. Brett Shishkoff is an intern at CRIS Radio, and he felt the touch tour and discussion with the director and cast members was invaluable. He – like me and many of our colleagues who attended – is completely blind. Hearing from the actors themselves and feeling the different objects helped us get a better sense of what was going on during the play, even though it did not include audio description.

“Having the touch tour bridged the gap enough for me to be able to still chuckle at some of the things that they were referencing and know why it was funny,” Brett says.

Although having audio description during the performance would have helped during the times when actors used gestures or other expressions we couldn’t see, my coworkers and I were still able to follow and understand the story.

“I was probably smiling and laughing for at least the first hour of the play,” Brett tells me.

Kudos to the American Theater Company for striving to make Xanadu an accessible performance for those of us who are blind or visually impaired. Keep up the great work, I hope this is the first of many accessible performances! As a fellow attendee put it, “Although they do not require the touch tour service, we can now say the American Theater Company is inclusive for all, disability or otherwise.”

I hope to continue attending more audio described and touch tour performances in the future, and so do my other colleagues.

“I always enjoyed the theater quite a bit before I lost my sight … We know now we can actually go to [performances] and enjoy them with our family and friends,” Brett said.

I can’t praise Evan and the American Theater Company enough for their outstanding service! Had I not known this was their first time putting on a touch tour, I would have never realized it – the tour and accommodations were extremely thorough and well thought out. Special thanks to Lighthouse board member Larry Broutman for generously donating the tickets for us to attend and enjoy the show. This sure was a fun and great opportunity for everyone!

Many theaters and museums throughout Chicago offer audio described performances and touch tours. The Chicago Cultural Accessibility Consortium (CCAC) has a calendar of accessible cultural events, and the League of Chicago Theaters also has a calendar of accessible performances. You can find a link to subscribe to their monthly email that lists upcoming accessible performances.

Have you gone to performances with touch tours or audio description? Please share your experiences with us – we’d love to hear from you!

AccessChicago 2016 Highlights for People with Vision Loss


Having resources and knowing where to look for help is of vital importance to people with disabilities and their families. Thousands gathered at Navy Pier yesterday for the biennial AccessChicago disability expo. Sponsored by the Mayor’s Office for People with Disabilities, the event showcases the latest in accessibility services and resources for people with all types of disabilities. The daylong event included information booths, recreational activities, entertainment and seminars for people of all ages and abilities.

This was my first year attending AccessChicago – in fact, I had never heard about it until I began working at The Lighthouse two years ago. Several exhibitors, including The Chicago Lighthouse, shared information about resources available to individuals with vision loss. The following are some of the resources highlighted in the event. Please note that most of these organizations are not affiliated with The Lighthouse and are only meant to serve as resources for readers.

  • Hadley Institute for the Blind offers a variety of long-distance courses for people with vision loss and their families. Course subjects include Braille, technology, sports and recreation, reading and writing.
  • iCanConnect Deaf-Blind Program provides telecommunication services to qualifying individuals who are both deaf and blind throughout the United States free of charge. The program’s purpose is to help individuals who are deaf-blind stay connected with others. Currently, The Chicago Lighthouse is the only agency in Illinois that provides these services throughout the state.
  • RTA, CTA, Metra and Pace provides public transportation throughout the Chicagoland area. All trains and buses offer accessibility services for people with all types of disabilities. The paratransit program offers door-to-door transportation to qualifying riders with disabilities.
  • Illinois Division of Rehabilitation Services helps adults with disabilities receive training and services they need to go back to school, find employment and live independently. Individuals interested in receiving services must first apply through their local office.
  • Equip for Equality works to advance the civil rights of Illinoisans with disabilities. The organization also provides legal assistance and resources to individuals with disabilities and their families.
  • I See Music is an organization that provides access to music recording and production to individuals with vision loss. Located in Beecher, IL, it provides training in recording technology and resources for music producers and engineers who are blind or visually impaired.

AccessChicago was filled with information and activities for people of all ages, interests and abilities. Best of all, it was a one-stop place for people with disabilities and their families to learn about what is available throughout the Chicagoland area. As a native Chicagoan with a disability, I was fortunate to grow up among so many great resources that helped me as a child and beyond. It is great to know that events like AccessChicago can help everyone become better informed about the resources available to those of us with disabilities. This was just a brief listing of the nearly 100 exhibitors at the event. The full list can be found on this website.

Thanks to everyone who stopped by The Lighthouse’s booth, we enjoyed meeting all of you! It was great seeing many familiar faces and knowing that many attendees are familiar with our agency. We hope you can join us again in 2018!

Commentary: A Different Way of Seeing Museum Exhibits

This year marks the 10th anniversary of the United Nations Convention on the Rights of Persons with Disabilities. The Canadian Museum for Human Rights is commemorating the anniversary with Sight Unseen, an exhibit showcasing works from photographers who are blind. Patrons with vision loss can enjoy the exhibit thanks to 3DPhotoWorks, an organization that makes tactile renderings of pictures and paintings. They’ve also enhanced the experience by including special sensors on the photographs that will give users more detailed audio descriptions when they run their hands across the photos.

I often see news stories about things museums and other cultural institutions are doing to make their facilities accessible to people with vision loss. By providing audio description or tactile representations of artifacts, these places are striving to make sure everyone can enjoy and learn from the various exhibits. I am particularly impressed with the Sight Unseen exhibit because of the technological approach being used to make all aspects accessible.

I have gone to museums and art exhibits that claim to be accessible, only to find that accommodations are minimal at best. While I might get somewhat of a picture by tracing my hands around statues or sculptures, I still cannot fully appreciate all the details. Museum staff does their best at describing key features, but I would still love to have the freedom of exploring artifacts on my own like everyone else. The inclusive nature of the 3DPhotoWorks technology allows people who are blind to do just that.

If more museums adopt this or similar technology, it will benefit both patrons with and without disabilities. Those of us with visual impairments could enjoy and appreciate exhibits more fully thanks to the audio and tactile components. People with 20/20 vision might be able to appreciate previously overlooked details if they could feel paintings and sculptures. Simple things like feeling the smoothness of a marble sculpture could help them get a better picture through their other senses.

There is much more to the Sight Unseen exhibit than the accessibility features. The fact that it showcases work by blind and visually impaired photographers communicates a very important message to the general public. When people talk about photography, blindness or photographers with vision loss are rarely part of the conversation. I hope this exhibit will help demystify the persisting misconceptions about people with visual impairments.

It is very fitting that the exhibit is part of the celebration of the 10th anniversary of the Convention on the Rights of Persons with Disabilities. This is a powerful way of conveying the important message that everyone has a right to equal access. It also gives the general public a better understanding of what can be done to make things accessible, and how everyone can benefit from it.

Kudos to 3DPhotoWorks for their innovative approach to making exhibits more inclusive and accessible. As someone who is blind, I believe this approach has a great potential in cultural institutions throughout the world. While people like me might not be able to appreciate visual details of paintings and statues, the audio and tactile enhancements will definitely allow us to see a better picture in our minds.

Commentary: Let’s All Be Included In Sports

May is National Physical Fitness and Sports month. Physical activity is important for everyone whether or not we are professional athletes. Exercise not only helps people have good health, but it can also provide various social and learning opportunities. Unfortunately, those of us with disabilities are often excluded from participating in meaningful physical activities. Persistent misconceptions about our capabilities are very common, and can lead to unintentional exclusion and other consequences.

Last week, I read an article about why it is important to include people with disabilities in sports. Besides reinforcing that important message, it reminded me of when I was unintentionally excluded from gym class in junior high and high school. While my sighted classmates were running laps around the track, doing gymnastics or lifting weights, I was either doing light exercise on a stationary bicycle alongside kids with other physical and intellectual disabilities or finishing up homework in the study hall classroom. Of course, at that age I didn’t mind having that study hall time – the less homework I had to do at home the better!

Now I realize that my teachers and classmates did not purposely put me on the sidelines. They – like most people – were afraid I would get hurt. Come to think of it, I too was afraid to a certain extent. Taking a semester of swimming class was a graduation requirement for all students, but an exception was made in my case. As a swimmer I was barely at the beginner level, and like many people felt fearful of even attempting to learn more advanced skills! Without a doubt, I was relieved that the school had waived this requirement.

Much to my chagrin, that all changed during my senior year when my teacher of the visually impaired persuaded the school to include me in swimming class! My parents also loved this idea, so I could no longer escape! I was the only student who is blind, and by working one-on-one with my coach I learned alongside my classmates with no problems – you can read about my experience as a blind swimmer here. Once the semester was over, I realized my fears were irrational, and that I enjoyed swimming very much. Of course, that leads me to wonder if there are other sports I’ve missed out on simply because I haven’t been willing to or given the chance to try out.

Sports and physical exercise are also important for people who are blind or have other disabilities. Although the statistics are not yet well known, it is estimated that these individuals are more likely to suffer from obesity because of lack of exercise. This is something we as a society can easily change by being inclusive and creating more sports opportunities. Let’s set our fears and misconceptions aside and focus on what individuals with disabilities can do. After all, sports are much more than about winning and losing!