The Wisconsin State Capitol building glows a bright white while lit against the black night sky. In the foreground of the building lies the busy streets of downtown Madison. Red stoplights and yellow street lamps also twinkle in the dark city scene.
After a successful Legislative Day, the Council is excited to share updates on progress made thus far and encourage you to stay involved with the process. Detailed below are the specific actionable steps we are taking to continue our focus on affecting change at the State Capitol:
COUNCIL ACTION: Strengthening our message regarding transportation funding, as established at Legislative Day.
- The Council has asked for a 3.75% increase in the Specialized Transportation Funding for the Elderly and People with Disabilities. The Governor’s original budget called for a 2% increase in each of the next two fiscal years.
- The Council has asked for the formation of an interagency council to enhance communication, reduce duplication of services, prevent service gaps and support fiscal responsibility among state agencies. Language for this communication has been shared by the Council with Representative Dale Kooyenga’s (R - Brookfield) office.
COUNCIL ACTION: Lending our name in support or attempt to influence modifications to Assembly Bill 201, Assembly Bill 218 and Senate Bill 150.
- Assembly Bill 201, authored by Representative Janel Brandtjen (R- Menomonee Falls), would increases penalties for certain traffic violations that result in great bodily harm or death and require drivers to take a vehicle right-of-way course after violating certain traffic laws. As this bill is currently drafted, it does not change the penalties for violating 346.26 (the White Cane Law) or require drivers to take a course on right-of-way law if they violate the White Cane Law. Representatives from the Council have met with Representative Brandtjen to discuss the inclusion of the White Cane Law for this bill.
- Assembly Bill 218, introduced by Representative Steve Doyle (D- Onalaska), expands the dog license fee exemption for service dogs. The current statute, which provides a fee exemption for dogs that provide services to people who are blind, deaf or mobility impaired, would be expanded to include:
- Any dog that is trained to provide specific physical or therapeutic functions under the control of a handler or
- If a medical professional has determined that the dog provides a benefit to a person with a disability.
- Senate Bill 150, introduced by Senator Terry Moulton (R-Chippewa Falls), requires the Department of Natural Resources to create an instruction program for veterans with disabilities who are learning to hunt wild turkey. The bill also establishes a special wild turkey hunting event during which only veterans with disabilities are allowed to participate. The bill requires a mentor accompany the veteran at all times when hunting.
What can you do to help?
Continue to watch future editions of On Sight, as well as other Council publications and social media, for continued legislative updates.
Pictured: (back row - left to right) Council Board Chair Chris Richmond, Sean Whalen, John Harrison, Hunter Lemerond, Annika Konrad, Samuel Sosa, Scholarship Committee Chair/Board member Bruce Parkinson and Scholarship Committee/Board member Kelsey Tiradani.
(front row - left to right), CEO/Executive Director Denise Jess, Kimberly Guerrero, Kaitlyn Siekert, Jennifer Zeller (on behalf of daughter Mia), and Lakota Tuft.
After careful deliberation, nine post-secondary students who are blind or visually impaired have each been chosen to receive a $2,000 scholarship for their outstanding academic achievements and community involvement. Scholarship winners chosen presented the strongest combination of cumulative GPAs, personal essays, community engagement, and letters of recommendation.
“We are very pleased and honored to offer nine scholarships this year to a talented and diverse group of students,” said Denise Jess, CEO/Executive Director of the Council. “They represent many parts of the state and range from those just beginning their post-secondary education journey in the fall to graduate, PhD and law school candidates. Our warmest congratulations and best wishes to everyone.”
The Council proudly announces the following award recipients:
UW-Madison – Composition and Rhetoric
UW-La Crosse - Business
UW-Whitewater - English
Edgewood College – Child Life and Educational Services
Madison College – general studies and then Education
UW-Waukesha – Art Illustration
St. Scholastica - Undeclared
UW-Waukesha – Teacher of the Visually Impaired
Harvard Law School - Law
Scholarship applications are accepted annually between February and April. The Council is impressed with all of the candidates and is confident that each student has a bright, successful future ahead of them.
This illustration shows a young woman sleeping in her bed. Behind her is a circle representing the 24 hour clock. The hours between 8pm and 4am are highlighted dark blue. The remaining hours between 4am and 8pm are light blue. This graphic represents the circadian rhythm of an individual. Below the image reads: “Without light cues, the master body clock cannot reset to the 24-hour day; therefore, your internal body rhythms and the release of melatonin and cortisol cannot reset to the 24-hour day, either.”
It’s the middle of the night. You toss and turn in your bed, trying in vain to fall asleep. Maybe you are trying desperately to stay awake for work during the day. Is it insomnia? Could it be narcolepsy? Another possibility is a condition known as non-24-Hour Sleep Wake Disorder, known otherwise simply as “Non-24.”
If you think you have non-24, you are not alone. Non-24 affects up to 70 percent of totally blind people. The symptoms include difficulty falling asleep at night, the inability to stay asleep throughout the night and trouble staying awake during the day.
“Many people think Non-24 is a sleeping disorder,” says LeAnne Fakir, Nurse Educator from Vanda Pharmaceuticals. “It’s actually a problem with the circadian rhythm.” LeAnne presented on behalf of Vanda Pharmaceuticals to the Council on May 13th about the condition.
The circadian rhythm is the body’s internal clock, which lets the body know when to be awake and when to go to sleep. Everyone’s circadian rhythm is not quite 24 hours, but sunlight helps the body reset and remain on a 24-hour cycle. Receptors in the retinas detect the light, alerting the brain and the rest of the body systems, whether it is time to be awake or asleep. A person whose receptors have been damaged cannot regulate their circadian rhythm using daylight, making it hard for them to function and focus when they need to, and to get the rest they require for a good night’s sleep. Non-24 can occur even if someone is not totally blind, and it can set in no matter the age of the person or the duration of their blindness.
“It’s important to learn as much about the condition as you can before visiting your doctor,” says LeAnne. “It will make it easier to explain your symptoms, and make sure Non-24 is a condition being considered when looking for an official diagnosis.”
To learn more about Non-24, call a Health Educator toll-free at 1-844-804-2424, or visit www.non24info.com. Support is available 24 hours a day, 7 days a week, so even if you are up in the middle of the night, you can get the help you need and the rest you deserve.
Adam Grassnickle, Council Program Assistant, poses for a professional photograph. He stands in front of white building with green shrubbery behind his shoulders. Adam, wearing a blue dress shirt and brown sport coat, smiles kindly. Adam has white hair, white eyebrows and a very fair skin tone – attributes common to those with Albinism. His tinted glasses are resting on the top of his head in a casual manner, rather than on his face.
“When I go into a nightclub, I glow under the black light,” says Council Program Assistant, Adam Grassnickle, with a chuckle.
Adam has a genetic condition known as Albinism.
Albinism is an inherited condition in which a reduced amount of melanin is produced in the hair, skin and eyes. This usually results in people with very pale skin and white hair, which is what causes Adam to glow when he is in a club under black light. Abnormal development of the retina and patterns of nerve connections between the eye and brain cause vision problems in people with Albinism. Nystagmus, a condition that causes the eyes to wobble, is the vision problem Adam has resulting from Albinism.
“My Albinism doesn’t really impact my life that much,” says Adam. “I just have to be careful not to get too much exposure to the sun. I always tell people, ‘I don’t tan, I get cancer.’ My vision problems impact my life more than the Albinism does. I don’t let my Albinism hold me back.”
To bring consciousness to this issue on a global scale, as well as to promote and celebrate those with Albinism, the United Nations established June 13th as International Albinism Awareness Day in 2014.
“I’m very interested in what comes out of having the day in terms of bringing knowledge to people about Albinism,” says Adam. “It’s nice getting the recognition. I’m definitely going to spread the word and encourage people to celebrate—eat some white cake or something.”
The National Organization for Albinism and Hypopigmentation, (NOAH), is the best resource for information about Albinism in the United States and Canada.
“They contacted my parents within three weeks of my birth,” says Adam. “They’re really helpful.”
Visit their website at www.Albinism.org to learn more about Albinism and for a listing of International Albinism Awareness Day events taking place on June 13, 2017.
Learning to Love Without the Visual Details
By Annika Konrad
Annika Konrad and her new husband walk hand in hand across an open field towards a lush, green row of trees. As the sunshine bares down, the pair casts long shadows behind them. Annika wears a white lace gown that features a deep v down her back and a train that follows behind her. To the couple’s left in the distance is a rustic red barn. In the blue sky hovers only a faint spattering of puffy white clouds.
So much of what it means to be a woman, or at least what society tells me it means to be a woman, is visual. I’ve previously written about my experiences being a visually impaired woman and struggling to find matching clothes and apply eye make-up. As I began to plan my wedding, I was reminded of how gender and disability intersect. If you’ve ever planned a wedding before, you know that it involves a lot of making decisions about details, and many of those details are visual—the look of the venue, the color scheme, the flourishes, the dress, the hair, the wedding party’s dresses and suits, the list goes on. And everybody wants to know, what does the bride want?
Well, my question for you is: what if the bride is visually impaired? Do you still want to know what the bride wants? I can tell you and show you what I want, but the way it looks to me might be different from the way it looks to you. Do you want it to look good to me, or do you want it to look good to other people?
I first encountered this question when searching for a wedding venue.
My husband and I scoped out a nature center set in a prairie reservation. As soon as I walked into the room I was in love with the aesthetic. Later, while reflecting on the venue at home, my husband said, “I’m not sure I like the owls and birds perched on the ceiling.” I said, “What owls and birds?” I didn’t see them. If he had never said anything, I would never have known they were there. Like my husband, I don’t consider owls and birds to be part of my desired aesthetic, but if I don’t see them, do they matter? On the other hand, if my guests see them, they will be part of their own aesthetic experience. Whose aesthetic experience is more important—mine or theirs? And vision impairment aside, can two people even have the same aesthetic experience?
I was also concerned about how my vision impairment would impact my experience at my own wedding. Would I be squinting in the bright sunlight? Will I tire of having to recognize faces and find people in the crowd? Will I accidentally upset someone by not immediately recognizing their face and displaying the appropriate reactions? Will I be able to read my vows in the sunlight? Will I trip over something? Will I spill a drink? These are the types of things I think about every single day, but when it’s your wedding day, you have a whole year in advance to worry about it.
Well, it turns out that the great thing about being a bride is that you’re in charge. You’ve likely controlled almost every detail from the color of the menus to the font on the invitations (unless you’ve been lucky like me and recruited other poor souls like your fiancé, sister, or mother into the thick of it). But most importantly, you’re in control of your own experience, and I was determined to enjoy it.
On the day of the wedding there were visual aspects of the experience that didn’t go as planned. I had two allergic reactions to facial makeup. My flower crown turned out to be a lot bigger than I had imagined. One of the groomsmen wore a dark gray suit instead of a light gray suit. I was squinting super hard while I walked back down the aisle with my new husband. The sun was shining directly in my eyes so I could hardly see my maid of honor give her toast during the reception. I had a hard time seeing guests’ faces while we were dancing in the barn.
But I didn’t care. I realized that I am in control of my own experience. Even though I couldn’t see many faces while walking down the aisle with my parents by my side, I knew all those blurry faces were there to support me and my husband and decided to wear the biggest smile of my life. It was so exciting to have so many friends and family gathered in one place that seeing all the details didn’t matter. My excitement carried me through greeting every guest, even when I didn’t know exactly who I was looking at. My excitement carried me through dancing to almost every single song on the dimly lit dance floor. It even carried me through (just barely) the oh-no-there-aren’t-enough-cupcakes moment.
I hope to find this feeling of pure joy in many other moments of my life and let it teach me to love even without the details.
Talking Blood Pressure Meter
This fully featured talking blood pressure monitor from A&D Medical is equipped with innovations in cuff design, pressurization, and deflation. The SmoothFit cuff (9 inches to 14.6 inches) included with meter is designed to make measuring your blood pressure an easier process. This monitor is great for low vision individuals. It also includes a 90 reading memory recall, irregular heartbeat detection, verbal readings in English, Spanish, or French, time and date stamping, and a pressure rating indicator to categorize the results according to WHO guidelines.
Item # HM272, $115.00
OrCam My Eye Presentation
When: Saturday, June 24
Where: WCBVI Office – 754 Williamson Street, Madison
Time: 12:00 p.m. – 3:30 p.m.
Presented by Aliza Olenick from OrCam Technologies. OrCam glasses have a camera that photographs text, converts it to audio, and reads it aloud. Learn more at www.orcam.com.