Our son Jasper was born in March of 2022, three months early, 1.5 pounds of love who is growing into a strong and joyful child.
Jasper’s early life has had many ups and downs, with more than two years spent in hospitals relying on a ventilator to help him breathe as he gets bigger.
Jasper was diagnosed with severe retinopathy of prematurity in the NICU, and when he was six months old, he failed his newborn hearing screen. Soon after, he underwent eye surgery for a detached retina.
In those days and weeks, we were terrified at the possibility of raising a child who could not see or hear. We searched online for guidance and someone to help and emailed Tracy at the New England Consortium for Deaf Blindness. “What do we do?” She responded quickly, “I’ll come visit you next week.”
It’s been nearly two years since that first visit and Tracy has been a regular presence in our lives for whom we are deeply grateful. Tracy has helped us to understand Jasper’s diagnoses with a focus on his abilities. She brings him toys to help him learn and has worked with his hospital therapists to collaborate on how to best support his development. Her constant cheerleading has been essential to us as parents to feel like we can move forward everyday. It brings us peace to know will have resources and people to support us in these early years and beyond.
We have a lot we are hopeful for., Jasper is active and happy and is constantly exploring. At this point, he has perfect hearing in one ear, and decent vision in one eye. We have plans to manage both his hearing and his vision going forward. Knowing that Tracy and the NEC community will be standing next to us on this journey and loving our son gives us confidence and a deep sense that we are not alone, and we are sure that Jasper’s life will be better because of the support we’ve received from NEC.
Whether you're headed to the pool or the beach, this book list is sure to make a splash.
Lose yourself in some beach read novels, instructions on swimming, or the lives of noted swimmers!
“The water is your friend. You don’t have to fight with water, just share the same spirit as the water, and it will help you move.”
— Aleksandr Popov
Digital book (DB), braille (BR), large print (LT), and audio-described videos (DVD) copies of these titles are available from Perkins Library or the Worcester Talking Book Library. Please contact Perkins Library to order any of these books.
Original list prepared by Patricia Ahearn, Reader Advisor (retired)
Updated and revised by James Gleason, Deputy Director/Special Services Librarian
The Awakening and Selected Stories
by Kate Chopin
DB 33806, BR 8894, available as BARD download
The Awakening, a novel first published in 1899, tells of a liberated woman who rebels against the constraints of marriage. Her intense swimming represents her desire for freedom. 1984.
Thirty-two-year-old new mother Audrey fights aging by swimming a daily mile in her backyard pool. But her enjoyable life begins unraveling when her husband befriends a female coworker, who Audrey suspects desires him. Paranoia causes Audrey to contemplate an affair of her own. Strong language and some descriptions of sex. 2000.
To sixteen-year-old Abby Lipman competitive swimming is everything, and she’s on track to qualify for the Olympics. But after a fainting spell at a swim meet – and a diagnosis of a deadly heart condition – she’s forced to find out who she is outside of the pool. For junior and senior high. 2018.
A powerful and expertly told novel-in-verse by an award-winning poet about a twelve-year-old Dominican American swimmer who is diagnosed with Juvenile Arthritis. 2023.
Fire in My Eyes: An American Warrior’s Journey from Being Blinded on the Battlefield To Gold Medal Victory
by Brad Snyder
DB 86882, BR 21816, available as BARD download
Memoir of a former Navy SEAL blinded during his deployment in Afghanistan. Snyder discusses his combat experience, his recovery after losing his sight on the battlefield in 2011, and the competitive swimming that led him to win a gold medal at the London Paralympic Games in 2012. Some violence. 2016.
Fourteen-year-old Keisha wants to go to a summer program for aspiring doctors. Instead, her guidance counselor places her in a program for at-risk kids. There Keisha discovers her innate swimming ability, learns to deal with prejudice, and makes new friends. Some violence and some strong language. For senior high readers. 2001.
Scottish teen Jimmy is teased mercilessly for being overweight. When the swimming coach discovers Jimmy’s secret cooking skills, he trades swim lessons for Jimmy’s help with a fundraiser. Jimmy unexpectedly excels at the sport and also develops an interest in visually impaired Ellie. For junior and senior high readers. 2003.
Chronicles the arduous years of training of the 2000 U.S. Olympic swim team that led to victory in Australia. Follows coach Dick Jochums and his team, including two athletes with asthma who overcame their medical condition to succeed. Some strong language. For senior high and older readers. 2001.
Author recalls an encounter from her teenage years when a baby gray whale followed her during a long-distance training swim along the California coast. Describes communicating with the calf she called Grayson and battling fatigue, fifty-five-degree water, and dehydration to protect him until he was reunited with his mother. Bestseller. 2006.
The swimming habits of various writers and artists throughout history (Johann Goethe, Lord Byron, Thomas Eakins, etc.) and the swimming references that appeared in their work provide much of Sprawson’s paean to the sport. The history of swimming, with emphasis on the British, is also discussed, as are some unusual record holders and the author’s own swimming experiences. 1992.
High school junior Skye is on the swim team and looks after her older brother, Sunny, who has Down syndrome, while their single mother works two jobs. When popular Mike begins dating Skye, she has to be devious to find the time. For junior and senior high readers. 1999.
Swimmer Alex Archer wants to represent New Zealand in the 1960 Olympic games in Rome. She also wants to play hockey, take ballet, study music, and perform in plays. This lack of total devotion to swimming is noticed by her boyfriend, Andy, her parents, her coach, and by Alex herself. But she remains devoted to her varied interests, until Andy is killed in an accident. For junior and senior high readers. New Zealand Children’s Book of the Year. 1987.
Basic step-by-step guide to competitive swimming techniques by an Olympic medalist. Includes descriptions of strokes and tips on water safety, training, and strategy. For high school and adult readers. 1974.
Marty has been a swimming star since she was ten. She always finishes first–in the water. Lately, though, she had asked herself if winning at swimming is worth losing the boy she cares about. For junior and senior high readers. 1974.
From a small town in Indiana, France goes to Mermaid Springs, Florida, in search of her missing mother, Grendy, a synchronized swimmer. In the process, France discovers truths about her family, her mother’s colorful circle of friends, and herself. 2002.
An account of the remarkable athletic achievements and indefatigable spirit of the young woman whose goal was to become the best swimmer in the world. Describes the motivations that obsess a marathon swimmer. 1978.
Co-author, Dave Tanner. Tips and techniques for the older swimmer. Includes training programs and the basics of the sport as well as information about the aging process. Offers sample workouts and advice on the prevention of injuries. 1999.
Gentle, natural way of teaching water safety to infants beginning at age 8 months. If simple, proven methods are used, the author believes that helping children gain confidence in the water can be delightful for both parent and child. 1983.
Offers a plan for workouts that will give swimmers a change from their normal routine, make them faster swimmers, and challenge them to work harder. Each workout describes the stroke to be used, the distance to be covered, and the time in which it should be accomplished. 1984.
Bestseller. Williams describes the movie spectaculars she made for MGM Studios and the physical injuries she sustained. She also discusses her traumatic childhood (the death of her oldest brother and being raped at thirteen), her place on the cancelled 1940 Olympic team, her use of LSD, and her four marriages. 1999.
Total Immersion: The Revolutionary Way to Swim Better, Faster, and Easier
by Terry Laughlin
DB 59654, available as BARD download
Coach and editor of “Fitness Swimmer” describes techniques for becoming a more efficient swimmer. Covers training, racing, balance, and moves to learn for fishlike motion through the water. Includes drills, tips, and dry land exercises for strength, suppleness, and slimming. Revised edition. 2004.
In 1955, the author and John Daggett set out to swim the Colorado River through the Grand Canyon. This was daredevilry and illegal. Their equipment was primitive: army-surplus rubber boxes, thin rubber shirts, long johns, and swim fins. They filmed their twenty-one day adventure. 1989.
Talented, multiracial teen T.J. Jones shuns organized sports but agrees to help his favorite teacher pull together a swim team. He attracts a group of misfits who become buddies and champions–earning the ire of the school jocks, whose bullying erupts into violence. Strong language and some violence. For senior high readers. 2001.
From access, to empowerment and recognition, explore the powerful insights and experiences shared by CVIers at our 2024 CVI Conference.
Written by:
Kara Baskin
Amplifying the lived experiences of CVIers centers everything we do at Perkins. Our 2024 CVI conference, “Building Meaningful Recognition,” united those voices: CVIers Dagbjört Andrésdóttir, Tina Zhu Xi Caruso, Nai, and Nicola McDowell joined us for a candid panel discussion about supporting access and recognition.
Here is CVI, lived, in their own words.
“Empowerment, to me, is knowledge and power. Power is knowledge. I feel empowered to take control of my life and to make decisions to improve my own life.” – Nicola McDowell
“The CVI community has empowered me to use Instagram to advocate and share my story.” -Tina Zhu Xi Caruso
Empowerment is the knowledge that I have a condition that’s getting to be known: There is a name for my condition. There is nothing wrong with me as a person. Knowing I can do something to make my life a little easier and that I can meet people in similar positions: That is empowerment.
-Dagbjört Andrésdóttir
“I’d like to see more focus on communities that are underprivileged and underserved. Throughout my CVI journey, I’ve met so many parents who are white. They have the privilege of getting a diagnosis because, if health insurance says, ‘No,’ they still can pay. I was a transracial adoptee from China. I was an orphan for 11 months. I don’t know if it contributed to my CVI, but I know that underprivileged communities and immigrants have malnutrition and other health conditions. I feel like we’re missing a huge population of CVIers like me because there aren’t any resources for us.” -Tina Zhu Xi Caruso
“Access is a human right.” -Nicola McDowell
“I was diagnosed at 19. Doctors thought my issues were due to other disabilities similar to CVI. Now I realize that maybe it was all CVI: People don’t realize how it manifests.” -Tina Zhu Xi Caruso
It might seem so simple and basic, but when you’ve had years of gaslighting, it’s powerful to have validation that your experience is real.
-Nai
“For most of my life, I didn’t have an understanding of CVI. I was diagnosed at 18. But it wasn’t until I started seeing emails from Perkins in my inbox about CVI workshops and I took a CVI course, and read “Vision and the Brain” that I was like: ‘This is my life!’” -Nai
“The stress that comes from having a visual issue can be debilitating at times: high anxiety, high stress. I have learned emotional regulation strategies to calm myself down to get out of fight-or-flight. When I’m feeling really overwhelmed and it’s a very busy environment, I simply shut my eyes. I practice mindfulness every day. I use my Headspace app.” -Nicola McDowell
CVI is a lot more than a visual impairment. It’s a whole-body thing.
-Tina Zhu Xi Caruso
“I usually describe my CVI as the book “Where’s Waldo?” Remember trying to find Waldo? I’m trying to look for stuff 24/7, all the time, every day.” -Dagbjört Andrésdóttir
“CVI is a full-body experience. Your brain isn’t an isolated organ: It’s deeply attached to every other function in your body. Sometimes, I just have to go lay down and be horizontal so that my brain can work. I take sensory breaks.” -Nai
“I have a theory: Regular people have 20 ‘spoons.’ With CVI, you might wake up with 10 spoons. Then, you have to figure out what tasks you need to do. Taking public transportation might be three-and-a-half spoons, depending on how many times you transfer. Getting washed up and dressed: That’s about two spoons. You get to school and have a lecture, and that’s another five spoons.. You still have to get home; you still have to do things. By the end of the day, you have zero spoons.” -Tina Zhu Xi Caruso
We suffer headaches, we suffer from nausea, we struggle in the heat. But if you look at the medical information about CVI, it’s not there: It’s a visual condition. In reality, we are experiencing full-body medical issues related to CVI. I think that’s massive: Living with high stress, high cortisol has a long-term impact with significant health issues. That’s something that has not been explored—and actually needs to be.
-Nicola McDowell
Want to share your own experiences living with CVI? We want to hear from you. Reach out by clicking the ‘Contact us’ button below.
Join us on our CVI learning journey.
Let’s learn and support each other on this journey. Have questions? Reach out to the CVI team at Perkins today!
All registered Massachusetts residents can prepare for the upcoming general election by becoming informed and taking advantage of these accessible voting options.
All registered Massachusetts residents can prepare for the upcoming general election by becoming informed and taking advantage of these accessible voting options.
Get your accessible voter information: Perkins Library has digital audio, large print, and braille versions of “Massachusetts Information for Voters” available by request. To receive a copy before the November 5th election, contact the Library at [email protected], 617-972-7240, or 1-800-852-3133.
Check your voter registration: Ensure your registration is up to date before the October 26th deadline for the November 5th Massachusetts general election. Names are occasionally purged from voter lists, so everyone should visit the Secretary of State’s website to verify and update information: bit.ly/VoterMA
Use Accessible Vote by Mail: If you have a disability that prevents you from marking a paper ballot independently, you can receive, complete, and return your ballot electronically through the Accessible Vote by Mail system. Apply at the online mail-in ballot portal by 5 p.m. on October 26, 2024 at bit.ly/MailBallotMA. After verifying your registration, indicate your need for an accessible electronic ballot and you will receive instructions with a unique access PIN via email along with a link to the online ballot portal that will allow you to mark your ballot electronically.
Return your ballot: Review and submit your ballot to your local election official through the electronic portal by no later than 8 p.m. on November 5th.
Vote in person: Massachusetts voting locations are required to have accessible entrances and parking, and be equipped with voting machines that talk and have screen magnification. Poll workers are prepared to assist with check-in, ballots, and booth access upon request.
For questions or assistance with accessible voting, contact Massachusetts Election Accessibility Coordinator Kelly Emmons at [email protected] or 617-727-2828, or reach out to your local election official.
Explore the connection between heat and CVI. Understand the physical and visual effects, as shared by individuals with CVI and their families.
Written by:
Jessica Marquardt
This summer many of us attended the Perkins CVI Conference. One of the best sessions featured a panel of individuals with CVI. They spent time describing what it’s like to live with the CVI, including its many physical ramifications. Many of them report that they experience pain, migraines, nausea, flu-like symptoms or auto-immune issues that they attribute to the stress and fatigue that comes from living with CVI.
They also shared how heat impacts their body generally and vision specifically. Over the past several years, individuals with CVI and care partners have shared many examples about heat and CVI. While little research exists on the topic, we have anecdotes that demonstrate it’s a worthwhile area to explore.
I recently had the opportunity to chat with an adult with CVI who graciously described what it’s like for her on a hot day. Out of respect for her privacy, we’ll call her Gillian. “Obviously, the hotter it is, the worse it is,” she says. “I get quite ill in the heat generally, so I can feel very sick and fatigued and quite dizzy. My visual field can be smaller. Everything can be a bit more white and washed out.
“I’ve been working the last few days in this heat. I might be pulling into a train station that I know, and yet it looks completely different and I don’t recognize it. I could be in a meeting room and my vision gets really bad and I struggle to hear and understand what people are saying more. If I’m trying to navigate a familiar route home on my own, I notice my vision is a lot worse. It’s more blurry.”
Tina Zhu Xi Caruso, an adult with CVI, agrees. “Especially when it’s hot or there’s a large crowd. The worst is when it’s a combo of both.” Tina is a photographer and rendered this image simulating her vision when she runs under these conditions. “I lose my sight,” she explains.
“Living in Iceland, heat isn’t that much of an issue for me on a daily basis,” says Dagbjört Andréstóttir, opera singer and adult with CVI. “But when I’m abroad in summertime, my visual field shrinks even more or my vision becomes unusable.”
Gillian explains that her higher-order visual functions weaken in the heat. She experiences optic ataxia (difficulty using vision to reach for or point to objects) and gives the example of placing a glass on the counter. She’s likely to miss the counter completely under hot conditions.
Other physical symptoms
It’s common for people with CVI to report that the heat leads to dizziness, mental fog, nausea, low energy, weakness, and difficulty with other senses like hearing.
Gillian adds that when she experiences visual fatigue, “it can be harder to hear and understand people. It’s that classic CVI thing of don’t try and look at listen at once. I can maybe do it for so long, but then the vision starts to go and it gets hard to understand.”
Social interactions get stickier too. “I definitely struggle more with the social interaction and all of those things in the hotter weather. It’s almost like my tolerance for everything is lower because I’m autistic as well. So that can be a challenge.”
Gillian asks us to envision the quintessential summer barbecue. “After a couple of hours, I’m just so exhausted, and I just can’t put up that facade anymore, right?”
Parent Kathryne Hart notes the global impact of heat on her son who has CVI and dysautonomia (a general term for disorders that affect automatic body processes, such as body temperature and breathing). He also takes medications that prevent sweating and make it harder to cool down; for example, some seizure medications will have this side effect.
“He starts vomiting in hot weather,” says Kathryne. “We live in the Deep South so A/C is a necessity on the bus and in school for him. Heat exhaustion symptoms include dizziness, blurred vision, and headache. So I would not be surprised to see CVI affected by hot weather in anyone with co-morbidities.”
Hot weather isn’t the only culprit. One parent notes that exercise or a hot shower can cause what their teenager calls “delirium.” In these situations, “sensory inputs like vision, hearing, and touch are displaced and scary. Vision is disrupted and lost first, followed by hearing and touch. In this delirium, it is impossible to plan using conscious thought so my child won’t know what to do and looks ‘stuck.’ They can’t plan motor movements or speak, but will move and respond if given short, direct verbal prompts to get them to a safe place. If we are warm for too long, then the impact can be a cognitive fog along with other symptoms that lasts for days.”
Ways to deal with the heat
Avoid it when possible.
Pace yourself and incorporate breaks.
Sit in the shade or a dark place – air conditioning is a plus.
Use a cool compress on the neck, forehead and wrists.
Make plans to access a cooler or freezer to refresh compresses and other devices, like a cooling vest.
Find a fan.
Drink water and electrolytes.
“Heat is tough for Henry,” says CVI parent Rachel Bennett. “It’s a huge migraine trigger. He visually fatigues so quickly in the heat. If he doesn’t have migraine, he still loses most of his energy if he’s out in the heat for too long and needs a dark room, cold compress on his neck, and electrolyte water to recharge. This is why the summer is so hard. Even when we try to cool him down in a pool, he also gets cold really easily and has to wear a full wet suit in 85-degree pool water.”
Another parent describes their teenager’s heat intolerance. “Between 70-80 degrees Farenheit, depending on humidity and direct sun, my child can use external cooling devices to manage for some amount of time. Above 80 degrees they must be indoors in air conditioning. This is a huge barrier because we have to be flexible on things that are planned weeks out, such as O&M, a friend’s picnic, or going to a performance where there is not sufficient air conditioning.”
They add, “this scary impact of heat is very much like that described by adults with Multiple Sclerosis, Myalgic Encephalomyelitis, and Long Covid, so we follow these communities for ideas.”
How to be a good companion in the heat
For friends and family who are spending quality time in the heat with someone with CVI: Thank you for your patience.
“I obviously feel really bad about it, like I don’t want to be just snappy and grumpy and horrible and stressed to everyone,” Gillian laments. “I don’t like that. It just happens.”
How can you help someone with CVI in the heat? Gillian says, “I think number one would try to be on the understanding of the difficulties they’re facing, and that, like me, they might be snappy, they might be grumpy, they might be tired and overwhelmed, and they might be struggling, and that might not be because they’re trying to be difficult. They might just be overwhelmed.
“And just try to understand if they can’t handle the heat and socializing or studying and all of those things, they might need that support to cool down before they can sort of think straight.”
It’s hot out there! People globally are dealing with extremely high temperatures. The first rule of being a helpful hot-weather companion for someone with CVI is to recognize that this is a real challenge. Individuals with CVI will have different symptoms and preferences for how to deal with the heat, but they all need people around them who recognize their signs and support them appropriately.
A list of strategies for accessing discussion board posts for online classes with low vision assistive technology.
Discussion board posts are a key part of college experiences, especially in online classes and in graduate school programs. I love discussion boards because I often learn so much from students and instructors alike about different topics, problem solving ideas and areas of interest, but most discussion board posts and interfaces are inaccessible to me as a student with low vision, as they often require a lot of reading or block other reading extensions or tools that I use in other contents. Here are examples of how I use low vision assistive technology and accessibility tools for discussion board posts, based on my experiences taking 60+ online classes across multiple platforms.
Reading posts in large print: Google Chrome Reading Mode
Out of all of the technology I talk about on this list, this simplified reading display is my all-time favorite tool for reading discussion board posts in large print! Especially since other simplified reading displays like Immersive Reader and Snap&Read aren’t compatible with some learning management software programs. With the free Reading Mode extension in Google Chrome, I can easily view initial discussion board posts, replies and prompts from my classmates and instructors in large print formats or have them read out loud with text-to-speech. I can also highlight text with my cursor and select the Reading Mode shortcut to open the selected text in a simplified reading display as well.
I have tested Reading Mode with Blackboard, Canvas and Moodle in the Google Chrome browser. While Reading Mode did not work at all with Blackboard, it worked fantastic with Canvas and Moodle, displaying initial posts and thread replies in a large print format that I could easily read and follow along with. One caveat with Moodle is that I sometimes have to highlight the names of students or their profiles as Reading Mode does not automatically detect this, but this is quick to do.
Using screen magnification: Docked view
When I’m using screen magnification with discussion board posts, I find it helpful to use a docked view so I can reference other posts while writing. In docked view, the zoomed image is shown in a fixed area on the screen and will follow the mouse cursor, keyboard focus, text insertion point and/or screen reader cursor unless otherwise modified in settings. I find this especially helpful when authoring content because I can move my mouse and enlarge discussion board prompts without having to resize my entire display and potentially distort text boxes or other display items.
Text-to-speech is an accessibility tool that reads text content selected by the user out loud, usually with word-level highlighting to assist with line tracking. I prefer to use text-to-speech over screen readers when reading discussion board posts because I don’t need the additional navigation or alternative input options provided by screen reading software, but I do find it helpful to have a nonvisual option for accessing text if I’m unsure about what something says or I can’t enlarge it well. With discussion board posts, I typically highlight text and then activate the Read Aloud shortcut (Ctrl-Shift-U) in my web browser to listen to the text as it is read out loud, or activate Speak Text on my iPad. I have an entire post on text-to-speech options below for students who don’t want or need to use a screen reader, but still want to have text read to them.
Positioning the display at an angle: iPads and tablets
When I am viewing detailed images or reading long passages of text, there are many scenarios where I prefer to read from my iPad instead of my computer because I can position the display at an angle underneath the bifocal in my glasses. I can also use pinch-to-zoom and drag across images or screenshots with a touchscreen more naturally than I can with a mouse or keyboard, which is helpful when enlarging text or math equations. I still prefer to use my computer keyboard for drafting initial posts and extended replies when possible, but I love that I can bring the screen closer to my face or interact with discussion boards while away from my desk.
Reading with another application: File attachments
Some of my math and assistive technology instructors have requested that students attach a file either in lieu of or in addition to text in a discussion board post so that responses can be viewed in another application. I personally find it helpful when students post a copy of their replies to a discussion board in a DOCX file format, as I can easily enlarge this in another application or use assistive technology tools to read it more easily than if it was posted as text in a discussion board alone. I also share copies of my own discussion board posts as attached documents to show allyship to other students who may have print disabilities like I do, as I personally find it easier to access text in this format.
Displaying content on a larger screen: Chromecast, airplay and external monitors
Another strategy for accessing discussion board posts with low vision is to display content on an external display. This can be done by connecting a computer or tablet to a TV or larger monitor using specialty cables, or using wireless casting tools like Chromecast or AirPlay on compatible smart TVs to mirror the display. I personally have used Chromecast to display content on a larger screen, especially non-text content like videos and images. I also have a Surface dock for displaying content from my laptop on a larger monitor, which was extremely useful for checking messages posted on Teams and viewing screenshots on a larger display.
The text boxes for discussion board posts are often small and don’t offer support for larger font sizes, so I prefer to draft my discussion board posts in another application like Microsoft Word, Notes or Google Docs and copy/paste text into the text box after I am done writing. Sometimes I will paste my replies as plain text and adjust the formatting before posting my initial post, while other times my headings and list structures remain intact when copy/pasting.
If I have to read a long discussion board post or reply (5+ paragraphs) that wasn’t posted in another format, I will copy and paste it into Word and enlarge the text with Read Mode. This is more common when I am reading posts in Blackboard, since I can’t use a simplified reading display for that application.
More tips for reading discussion board posts with assistive technology
All students and instructors should be provided with resources on how to present text in accessible formats for students who use assistive technology, including how to use heading structures, ordered/unordered lists and sharing content in accessible file formats. Learn more about this topic in Designing Accessible Documents With Microsoft Word
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