Visually Impaired: Now What?

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Living with Blindness Before the ADA: Review of "Planet of the Blind"

Overview of Planet of the Blind

Stephen Kuusisto's fantastic book, Planet of the Blind, details his life as someone living with blindness before the implementation of the Americans with Disabilities Act. He describes what it was like growing up, how he was ostracized throughout his education, and how he struggled to deal with his own thoughts on being "disabled." In the beginning of the book, Kuusisto details the cause of his blindness and the diagnosis of retinopathy of prematurity. He also explains his visual impairment through the use of metaphors in descriptive detail. Despite being legally blind since birth, Kuusisto struggled to accept his visual impairment. As Peer Advisor Audrey Demmitt described in her review of the book, Kuusisto spent an inordinate amount of time "faking it" in the sighted world, living as if he was not visually impaired.

Struggling to "Pass As a Normal Child"

Kuusisto struggled to "pass as a normal child" early on. In one instance, while driving a boat, Kuusisto describes how he felt when he failed to see something his father pointed out: "caught between warring snakes of definition: blind I'm a fatted failure; posing as a sighted person, I'm on a terrible high-wire. But people will only like me if I can see." He certainly feels as though he must fit into societal norms as not to be deemed a failure, yet, at the same time, he admits that he can hardly imagine the energy it must have taken to lead a life as though he had no vision loss. Without admitting it, Kuusisto is definitely living a life of trying to pass himself off as a typical, sighted young person and live life just as any other young person would.

There are numerous statements throughout the book that point out Kuusisto's struggle with trying to "pass" as a sighted person. For example, when he was a teenager, his problems in the classroom were "legend," and his embarrassments were "legend." I would even go as far as to suggest his life's struggle was "legend" trying to pass as a person without vision loss.

Applying the Medical Model to Kuusisto's Experience

Another important theme in this book is the use of the medical model as a way to approach Kuusisto's disability. His vision loss was viewed as a "tragedy" and that there needed to be a cure to fix him. Surgeries were needed to "fix" his eyes, and numerous medications were taken for the stress and pain he endured. Rather than "fit" into any of the stereotypes of a blind person, such as wearing dark sunglasses or using assistive technology, Kuusisto fought his vision loss.

Kuusisto’s Relationships with Others

Throughout the book, Kuusisto details his relationships with others and how they perceived his disability, including his parents' views, his girlfriends', and his own struggles of whether or not he should be up front and admit to being blind. As educated as Kuusisto’s father was, he was never really willing to admit to his son's disability and encouraged him to be as "normal" as possible. His mother was willing to allow for extra tutoring and demanded that Kuusisto attended school just as any other child would; however, she seemed distraught as though avoiding Kuusisto's blindness was not having to admit that it ever existed.

Three characters, Ramona, Bettina, and Barry, helped him during his "coming of age." Ramona and Bettina helped him with reading aloud, and Barry introduced him to the white cane, giving Kuusisto some independence and self-admittance into the realm of disability. It isn't until after he's fallen into fresh concrete that the idea of getting a guide dog is planted in his mind and begins to take root. As this idea flourishes, it is quite apparent in Kuusisto's writing the value he places on his newfound freedom and ability to travel independently. It is then that he truly begins to accept his disability. No one could ever replace the freedoms he is granted with the use of his guide dog Corky. The excitement and joy he expresses are certainly palpable.

My Final Thoughts on the Planet of the Blind

I would absolutely, unequivocally, without hesitation recommend this book to anyone who might inquire about blindness; however, I would express that were one to know a blind person or read this book as an account of a blind person, they only know one person’s account of blindness. As a legally blind person, relating to a lot of similarities, there are numerous differences as well. As an example, some people who are blind vehemently hate their cane. Some do not. Some people who are blind can’t stand dogs; some can’t accept the responsibilities incurred with having a guide dog, and some just aren’t ready for one reason or another. While the guide dog was a wonderful sense of relief and expression for Kuusisto’s independence, it is not the cure-all for all individuals who are blind or visually impaired. It’s not as simple as black and white; there are whole gradients of grays being ignored and must be understood. Just as there are gradients of colors, there are entire spectrums to being blind.


If you are experiencing vision loss, there are many resources available to help you better understand your eye condition and find services to regain your independence. VisionAware offers information about support groups and many personal stories of individuals living with vision loss. You may want to read one of these stories to find out what paths others have taken. Another good read is Peer Advisor Audrey Demmitt's helpful piece about adjusting to vision loss, From Personal Loss to Personal Growth and the Road to Independence. Remember, as AFB's President and CEO, Kirk Adams said, "losing your sight doesn't have to mean giving up your independence, your career, or your favorite hobbies. With rehabilitation training and the use of assistive technology, people with visual impairments can continue reading, cooking, golfing, traveling, surfing the web, and much more."


Topics:
Disability
Independence
Low Vision
Personal Reflections
Reading
Social Life and Recreation

Thumbs Up on the ADA and Audio-Described Movies & TV

woman ordering popcorn at movie concession stand

I am not a film critic like Gene Siskel or Roger Ebert, but I want to give a thumbs up to the increased availability of audio-described movies and television. If you are not familiar, an audio-described movie provides extra verbal narration of visual elements happening in the film. It could be hand gestures, facial expressions, physical movements, a description of clothing, or action happening in the movie. It describes things that a person with vision loss might not notice or realize. There have been several recent developments that have provided more audio description than ever before to the blind and visually impaired community, which I will share in the paragraphs below. But first, I want to explain the role that the Americans with Disabilities Act (ADA) plays in audio description.

The Role of the ADA

Audio description in movie theaters today is thanks to the ADA. At the close of the Obama Administration, The U.S. Justice Department, the federal agency responsible for enforcing much of the ADA, issued a long-awaited new regulation requiring movie theaters to provide closed captioning and audio description whenever showing a digital movie that is produced, distributed, or otherwise made available with these features.

Title III of the ADA requires public accommodations to furnish appropriate auxiliary aids and services, where necessary, to ensure effective communication with people with disabilities, and the department has long held the position that captioning and audio description are auxiliary aids required by the ADA. The new regulation simply connects the dots and makes it crystal clear that movie theaters must make description available to their patrons. But as significant as the ADA is, it does not apply to television programming. That's where another federal law comes in, the Twenty-First Century Communications and Video Accessibility Act. This law, enforced by the Federal Communications Commission, required America's top TV networks to make a portion of their programming accessible to viewers with vision loss through audio description. So, now that you know the law let me share my thumbs ups on the progress in audio description.

Thumbs Up on AMC

AMC Theatres has agreed to improve services for blind and visually impaired movie-goers. In April 2017, AMC Theatres reached an agreement with several blind individuals, the California Council of the Blind (CCB), and the Lighthouse for the Blind and Visually Impaired in San Francisco to ensure blind customers have reliable access to audio description services at AMC movie theaters nationwide. Under the agreement, AMC will require the managers and staff who are responsible for programming and handing out audio description equipment to be trained on the equipment. AMC and the plaintiffs in the case have developed staff and customer information guides to facilitate better service. AMC also will require managers to check the equipment regularly. Additionally, AMC will now offer audio description immediately before the feature movie so customers can test the equipment before the movie begins. If a theater’s audio description equipment is out of service, AMC will now update theater websites to remove the audio description designation from show times. AMC has agreed to implement these changes nationwide.

Thumbs Up on the FCC

The FCC will increase the amount of required video described programming on TV networks. This month the FCC adopted new rules to ensure Americans who are blind or visually impaired have access to more video described programming. Beginning in July 2018, broadcasters and pay-TV providers carrying one of the top networks must provide 87.5 hours of described programming per calendar quarter. Currently, it is 50 hours. The present broadcast networks are ABC, CBS, Fox, and NBC and the non-broadcast networks are Disney Channel, History Channel, TBS, TNT, and USA.

woman using headset to access audio description

Thumbs Up on Amazon Movies

Within the last month or two, Amazon launched an audio-described movie section. These movies are available for rent or purchase with a monthly membership fee. If you are an Amazon Prime member, that fee can be waived. The movies are easy to access on your smartphone device. By simply swiping across the screen when the movie starts, you can turn on audio description, and once on, it stays on for all movies you want to watch. Check the audio-described movie list on Amazon.

Thumbs Up on Netflix

In the past year or so, Netflix has greatly improved its availability of audio-described content. More content is now available for streaming movies, TV shows, and documentaries than before. Additionally, Netflix has improved accessibility of viewing on various devices such as the iPhone, iPad, and Apple TV. You can read more details about these improvements in the July 2016 issue of AccessWorld.

So as we reflect on the 27th anniversary of the ADA, there is much to celebrate in the area of audio description. A great suggestion would be to grab friends and family, a bucket of buttery popcorn, and check out a great audio-described movie or TV program. Thumbs up!

Information Related to This Post

Department of Justice Ruling on Public Accommodation Related to Closed Movie Captioning and Audio Description

AMC Theaters Agrees to Improve Services for Blind Movie Goers

FCC Rules

American Council of the Blind Audio Description Project


Topics:
Arts and Leisure
Helpful Products
Independence
Low Vision
Self-Advocacy
Social Life and Recreation
Disability

ADA for All, Including Disabled Parents of Non-Disabled Children

Unless one studies and interprets the legalese of our laws, it can be quite overwhelming when trying to understand our rights under the Americans with Disabilities Act as individuals with disabilities. While I had been capitalizing on services for students with disabilities during my college years, I recently came across a confusing scenario that snowballed into several departments, agencies, and advocacy groups coming together to ensure my rights be respected and, most importantly, enforced.

Steven sitting at a desk with a laptop using CART

Steven using CART services

Experiencing Exclusion As a Parent

As a single parent involved with my children's education, I would too often be forced to endure situations that would exclude me. After raising two boys and putting them through school without assistive technology, it was apparent in hindsight I could have benefited had I known about assistive technology as well as CART services (Communication Access Real-time Translation, verbatim text of spoken presentations provided for live events).

Now that I use assistive technology exclusively, I would ask my daughter's teachers to send all papers to me in electronic format. This meant, according to some teachers, more work by having to scan the papers they were sending home with all their students in-class, yet I never understood their chagrin. I wondered and asked out loud, hadn’t they typed and printed these documents from an electronic source to begin with? Instead of printing one less sheet of paper, couldn’t they just merely e-mail me the document? For the most part, I would get complying responses; however, it generally turned into a fiasco with the teachers being overwhelmed with limits to their own time allowed for this "extra work."

Hearing Loss Dismissed or Ignored

More concerning were the teachers and administrators who would dismiss my hearing loss. It is quite easy to quickly identify me as being blind or visually impaired with my dark sunglasses and my white cane, yet, at a glance, there are no real obvious indications pointing towards the severity of my hearing loss. Because of erroneous assumptions that all people who are blind or visually impaired have phenomenal hearing, I found myself facing extreme difficulties understanding everybody while I received zero empathy and understanding from the school’s staff. In trying to be an active and concerned parent, I have faced more hurdles due to their lack of understanding and accommodation for a person with dual sensory loss.

Steven Wilson kneeling next to his daughter Daevi who is in a light blue dress after a school play

Towards the end of my daughter’s kindergarten year, when her school had a performance for all of the parents, friends, and family, I realized how much I had been excluded. The principal at the time had made his public announcement that he was no longer going to be with us; however, I didn’t understand any of this. It wasn’t until the following year while enrolling my daughter into first grade and meeting the new principal that I realized what it was the previous principal had said.

Troubled by this communication gap and worried about what else I may be missing, I asked a stenographer I’d been working with through college classes about CART for parents of children attending school. The quick and easy answer was, yes, parents can utilize CART, especially since the school is a public institution receiving federal funding. This seemed clear; however, much to my chagrin, when I approached the new principal about my needs to be an active participant in my child’s education, he was not at all supportive.

ADA More Than Ramps: It Includes Rights of Parents with Disabilities as Well

Here I am, the lowly parent, as I was made to feel, now facing the mighty educational institution, trying to educate the staff and administration about my rights and that the ADA isn’t in place just for ramps and doors but, more importantly to me, for communication needs. I would have thought that school educators would be on top of this issue as are the staff and instructors of the colleges I’ve been attending. It then dawned on me that these educators were applying the law only to their students, not to parents!

Getting Help from Advocacy Agency

After reporting back to my friend on the difficulties and pushback I’d been receiving, the friend went on to put me in contact with a state advocacy agency, the Arizona Commission for the Deaf and Hard of Hearing (ACDHH). A leading specialist and advocate of this organization then provided me with links to better understand disability law and help me with advocating for myself. The agency also went to bat for me with the Assistant District Superintendent.

This staff member from the ACDHH visited the Assistant District Superintendent and suggested that the next step after everything we’ve pursued would be court litigation. After that, changes occurred rapidly in my favor. Suddenly, I was being contacted by departments I’d never known existed within the school district wishing to collaborate with me on the dates and times I would need CART services. I needed this service to better understand and communicate with the teachers, administrators, and to participate in my daughter’s school performances as well as enhanced inclusion for parent/teacher conferences. Surprisingly enough, I was also flooded with e-mails apologizing for previous reactions and assurances that I would be accommodated in the future.

Without the help of the local community, state advocacy groups, and very knowledgeable people concerning the rights and laws pertaining to the ADA, I would have been very easily steamrolled right over, neglected, and ignored.

A close up of Steven Wilson and his daughter Daevi

Learn from My Experience: Find Allies

My main take away from this experience is, not only do we find some institutions unfamiliar with all that the ADA provides, but we do have allies out there to assist those of us in need. My advice to those struggling with agencies or institutions who feel they are getting the run around is to seek out advocacy and disability law centers in your state and local community. There are individuals out there who advocate for all of us. Finally, the ADA is in place for far more than just ramps, doors, and access to buildings. The ADA isn’t in place just for educational reading materials nor is it in place just for our students in primary and secondary schools; it is also in place to assist those in need, which include parents with disabilities of non-disabled children.

Helpful Resources

The following resources are examples of advocacy, self-help tutorials in Arizona, and my home state as well as some other state and federal resources.

Arizona Commission for the Deaf and Hard of Hearing

Arizona Center for Disability Law Self-Advocacy Guides

Your Rights: Practicing Self-Advocacy

The ADA, the Supreme Court, and Self-Advocacy

Disability Rights

Americans with Disabilities Act

Americans with Disabilities Act in Context


Topics:
Blind Parenting
Caregiving
Low Vision
Personal Reflections
Self-Advocacy
Disability

Five Reasons Why I Still Use a Landline Phone

Today, with the ever-increasing advancements in technology, many people are cutting the cord and getting rid of their landline phone. They are using their cell or smartphone to make those necessary phone calls. Their smartphone can accomplish that and so much more, so some might think, why continue to have a landline? Well, I can give you at least five reasons why I still continue to use mine. Even though I am in my mid-40s, I am a bit old fashioned and thoroughly enjoy my landline phone, and here are the reasons why.

A close up of Empish sitting at her desk in her home office using a landline phone

Five Reasons Why I Use a Landline Phone

  1. I can get to my landline quickly and easily. In each room of my town house, I have a landline phone. Two are cordless, and two are connected to a phone wall jack. I have one in the kitchen, one in the bedroom, one in my home office, and one in the living room. No matter where I am in my home I can quickly and easily get to a phone. Whereas with my cell phone, I can’t do the same. For example, if I leave it upstairs in the bedroom, I have to run back up the steps to get it when it starts ringing. Or, I would have to wear my cell phone on my body while moving around the house in order to keep it close to me. In my opinion, neither option is very convenient.

  2. My landline phones have easy to press buttons. All the phones in my home, especially in my home office, have easy to press buttons on the keypad. I don’t have to figure out where the numbers are. I don’t have to figure out how to maneuver call waiting. I have an answering machine option built into my landline phone in my home office so that I don’t have to figure out complicated voicemail boxes. I just press one simple button and listen to my messages, press another to delete, and press another to rewind or fast forward.

  3. I don’t want to be available constantly. I like having some separation between home, work, and cell. If I had just a cell phone, for example, then my personal and business calls would come to the same phone, and it would be ringing too much. I don’t want to constantly be on call all the time. I want to be able to separate home life from work life. The fact that I have a home number and cell number help keep the two separated and my life more balanced.

  4. If my cell phone is lost, stolen, or damaged, I might be up the creek. Fortunately, I have a landline, so I don’t have to worry about this. If something were to happen to my cell phone, I have another phone to make my calls and handle my affairs. For example, if my cell phone were damaged and I needed to ship it off for repairs, what would I do in the meantime? What would be the backup plan to make calls and connect with people?

  5. My home security alarm system is another reason why I still have a landline phone. I know alarm systems can be connected to your cell phones, but they are more expensive. I recently called my company, and they gave me a higher quote for a monitoring service than what I currently pay. In addition, they would have to come out to my home and install a receiver box that would pick up the signal with the cell tower in my area. This is an extra expense. I politely said thanks but no thanks and got off the phone--my landline phone that is.

My reasons for keeping my landline phone are not to persuade you to cut the cord in your own life but to share my personal experience. You have to decide for yourself what works best for your home and family situation. I have looked and weighed the pros and cons, and for now, I have decided to keep my landline phone.

Resources for Using Your Phone

Using the Telephone and Telephone Adaptations for People Who Are Blind or Have Low Vision

Cell Phones. Tablets, and iDevices

Cell Phones, Tablets, and Other Mobile Technology for Users with Visual Impairments


Topics:
Helpful Products
Home modification
Low Vision
Personal Reflections

Dealing with Diaper Rash – Holly’s Journey

When my first child, Nuala, was 8 months old, she developed a very severe bout of diaper rash. The problem was, I had absolutely no idea she even had it.

Nuala, Holly Bonner's Oldest Daughter, sitting up with a pink teddy bear at 8 months old

Mother Doesn’t Always Know Best

I thought I was changing my daughter’s diaper often enough, approximately every hour. My mother had told me to sprinkle cornstarch on her buttocks after each change to prevent irritation. I had a large, stainless steel shaker with handle that I kept next to her changing table filled with cornstarch. I remember feeling like I was powdering a tiny cake every time I changed a diaper. The cornstarch would leave behind a faint cloud of white dust, often making me sneeze. I found out relatively quickly that mother doesn’t always know best.

Happy Baby No More

Nuala was a very agreeable infant. She slept through the night at 3 months old. She laughed and giggled when her daddy and I spoke to her. She never, not once, fussed during changing—not even for the occasional explosion diaper. That was until she got her first diaper rash.

I remember lying her on her pack and play to change her. As soon as I touched her thighs, near the tabs of her diaper, she began screaming. I was convinced she was just in need of a nap. Once the dirty diaper had been opened, I reached for the baby wipes to clean her genital area. She had pooped, and it was everywhere. I went through several wipes, using an up and down motion from left to right. Nuala wailed the entire time. Her little body was actually trembling, which completely freaked me out. I had no idea what was wrong, but my first instinct was to cradle my baby. Naked, I picked her up and placed her on my shoulder. I put my hand on her butt cheeks for support, and I could feel tiny bumps all over them. The sensation was very similar to getting the chills or chicken skin across your arm. There were clusters of these bumps all over my baby’s bottom.

Daddy Weighs In

My husband, who is fully sighted, works the midnight shift. He sleeps during the day, and I make a point never to wake him up unless there is an emergency. I felt this was something he should look at immediately. I headed up to our bedroom and turned on the light.

Bleary eyed, my husband examined our daughter. He had helped me change her diaper the night before, prior to him leaving for work. He became deeply concerned about the bumps on her buttocks. Upon turning Nuala over, he informed me that her skin was red, broken, and deeply irritated in between the rolls and folds of her chubby baby legs.

I phoned our pediatrician immediately. Despite not having an appointment, she invited us to come in that evening as an emergency visit.

Pediatrician Examination

Once in the exam room, our pediatrician confirmed Nuala had a severe case of diaper rash, which had also developed into a fungal infection. Her skin was blistered and red. Parts of her thighs had small, open sores on them. She immediately prescribed a topical prescription medication called Nystatin.

The doctor took my hand and ran it up and down my child. “Do you feel this?” she asked. “Touch here,” she would say as she placed my fingers on a different spot. Every touch put a tighter knot in my stomach. I was convinced I was the most incompetent, worst mother on the planet. I could literally feel the tears welling up in my eyes thinking about what I had done to my baby.

“When did you notice something,” the doctor asked. I explained what had happened during the diaper change. My husband came to my defense indicating he had helped change our daughter the night before but had only noticed a little redness, not the sores. Almost 24 hours later, the result required immediate medical intervention.

A Blind Mom’s Fear

I remember sweating in the exam room, convinced this visit would result in a call to child services for a neglect case. My pediatrician quickly honed in on my fear. “What’s wrong?” she asked. “I’m afraid.” Then, she did the unexpected; she hugged me.

“You’ll go through worse than this,” she laughed. She reassured me that diaper rash is something that can be preventable, and she diligently reviewed steps to help me treat my baby’s case. She was patient, kind, and above all, she explained both the visual and non-visual cues to look for. Our doctor was also quick to tell me not to "beat myself up" about this situation. She noted had it not been for my maternal connection to my baby, I would have never picked her up off that changing table in the first place prompting me to feel the rash.

Treatment

We drove straight from the pediatrician’s office to our pharmacy and were provided four tubes of the Nystatin cream. I increased the frequency of my diaper changes and applied a liberal amount of the prescription medication on the front and back of my daughter for five consecutive days as directed.

Nuala Holly's Oldest Daughter as a baby smiling at the camera

Nuala’s case of diaper rash was so severe we also had to take her back to the doctor for a follow-up visit. During that time, our pediatrician advised we stop using the cornstarch and switch over to a zinc based diaper ointment. She recommended Boudreaux’s Butt Paste. This particular cream provides excellent coverage but also makes it easier to use as a visually impaired mom because the thickness leaves a raised residue. Blind or visually impaired parents will find this helpful in determining what areas you have coated with the cream.

No More Diaper Rash?

Nuala never experienced diaper rash to that degree again. My second daughter, Aoife, never had the issue. Having been a more experienced visually impaired mom, I knew what to do and what to "feel for" so to speak. Thankfully, only my youngest remains in diapers. I am hoping to have her potty trained this summer, putting my days of Butt Paste and Pampers behind me. Fingers crossed.

For more information on diaper rash, read our new article, Dealing with Diaper Rash: Advice from Angela Freeman, Nurse Practitioner from the Blind Parenting series.

More from the Blind Parenting Series

Introduction to Blind Parenting

Breastfeeding Baby As a Blind or Visually Impaired Mother

Bottle-Feeding Baby As a Blind or Visually Impaired Mother

Dealing with Diaper Rash: Advice from Angela Freeman, Nurse Practitioner

Tips for Toddler Potty Training for Parents Who Are Blind or Visually Impaired


Topics:
Blind Parenting
Caregiving
Independence
Personal Reflections

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