National Federation of the Blind of Nevada
Live The Life You Want
Terri Rupp, President
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by Aaron Rupp, reprinted from the February 2019 issue of the Braille Monitor
From the Editor: Aaron Rupp is the husband of Terri Rupp, president of the National Federation of the Blind of Nevada. Their daughter Marley is in school, and when you have a blind student in a public school, you have the challenge of working on an individualized education plan (IEP). It can be difficult to be a parent negotiating for one’s child when you feel your comments are disregarded by people who think your lack of professional certification means that your comments weren’t worth the time taken to listen to them. Here is Aaron’s reaction to a recent IEP for his daughter Marley:
Sitting in this chair, my heart is pounding. Seriously pounding, to the point that I have to consciously focus on breathing to stay calm to be able to conduct myself appropriately and stay focused at this critical moment. But the pounding is almost all I hear and feel.
At the table with me is my wife Terri, mother of our daughter Marley, and Marley's educational "team." And sitting across the table from me is the school district's cane travel instructor, discounting me and my wife every time we speak.
The discussion surrounds the selection of which cane Marley is to use. We want the longer, lighter white cane, while she feels that the shorter, three-times-heavier cane with a big ball tip is the best choice. Every time we speak about what the white cane means or mention the philosophy of advocacy and higher expectations/standards we live by and expect for ourselves, including Marley, a look of sheer disgust smears across this teacher's face, followed by a heavy roll of the eyes and pulling of her brows as high as she can, finishing off with a sarcastic smile to the others (Marley's principal, kindergarten teacher, low vision teacher, and special services coordinator) clearly saying, without using words, who the blank do you think you are to make decisions for your daughter, and I can't believe we're wasting our time listening to his rantings, folks.
This is the look, but the words she uses are, "What training and credentials do you have in orientation and mobility (O&M)?" The implied question is, why do you think you should have a say in the course of your daughter's independence development? What she says is, "I have a masters in O&M and years of experience. Marley's white cane with the metal tip is a danger to others."
I look at these divine and almighty credentials of hers as a hindrance. She has had six years of formal training on how a sighted person tells a blind person what's best for them, and she has been teaching subprime methods that do not encourage confidence or allow our children to navigate through life at an equal pace with their peers.
What does the short cane mean to me? Because it is shorter, instead of picking up on obstacles and landscape variations several feet in front of the traveler, they discover steps and walls when the obstacles are literally inches in front of their toes. Short canes set the expectation that safe travel means far slower, less confident walking, and that is a fact. Short canes equal tenseness because the reaction time must be immediate.
The standard cane being pushed by the school is heavier, two to three times heavier than her long white cane, with a weighted stub at the end that is meant to be pushed/dragged, grinding against forward motion with every step. It catches on every crack, rock, and twig the user encounters. This does not allow the cane traveler—including my daughter—to move freely or on par with her peers. Again, it reinforces the foundation of lower expectations and standards. That is a fact.
Most importantly, the difference symbolically from the short, red-ended heavy cane versus the long white cane is immense. The standard cane originates in the UK circa 1921, created by James Biggs, who found himself newly blind and painted his walking stick to become more visible (White cane, Wikipedia.org). The long cane was developed in 1958 by the Iowa chapter of the National Federation of the Blind, designed to "enable us to walk faster without diminishing either safety or grace” (“The Nature of Independence” by Dr. Kenneth Jernigan, NFB.org) One was created from a "discomfort from the amount of traffic around his home," and designed for the purpose of "being more visible." From the inception of its development in England in the 1920s to France in the 30s and the Lions Club in America in the 50s, the main theme to its development and adoption into law has been the concept of visibility, alerting others to the presence of a blind person. In contrast, the long white cane was created as a result of dissatisfaction with the, as Dr. Jernigan put it, “the short heavy wooden type, and we youngsters associated carrying a cane with begging, shuffling along, and being helpless.” This new cane was designed for the purpose of helping blind people advance on the road to freedom and independence. This shift was mentioned many times by Dr. Kenneth Jernigan, and these are facts.
In short, one symbolizes "Look out, I am a handicapped person, and I can't get around that good," while the other symbolizes "Look out, I'm a handi-capable person, and I'm coming through!"
This lady's perspective and decisions regarding the training and foundation for Marley and countless other children are based on conventional education and only values input that supports her lower expectation standards. Our perspective and decisions are framed from lifetime experience, Terri being blind since childhood, and me having been partnered with her for the past eleven years. As a child Terri went through a system that enforced the negative promotion model of blindness. She learned using a short cane, and Braille was not encouraged. When we got together, she was in college. Staying up all night trying to keep up with the required reading, with her face pressed down into the book on the table, was common. Reading at fifteen to twenty words a minute was why it took so long and caused the physical problems that come with trying to read what one cannot see and therefore cannot read efficiently. Walking into light poles and fire hydrants were a part of her days, all because someone had a different idea—a professional idea—of what a blind person should be and what devices she should use. It wasn't until she adopted a positive promotion model that she dared to have the audacity to live the life she wanted. She got the proper training. Now she runs 5k's, navigates airports solo, is an amazing mom, and reads faster than George W. speaks!
Do you think a formal education experience ever landed this teacher in a room of several thousand successful blind people cheering at the top of their lungs in celebration of their independence, or meeting blind doctors, Harvard graduates, Everest climbers, and elite triathletes? Probably not, which is why her expectations and view of the blind are unwittingly discriminatory and are exemplified by her insistence on subprime and archaic teaching methods.
Cane travel skills are like handwriting skills. Am I to expect my five-year-old to be writing in cursive? Of course not; it is a development of fine motor skills that she is working through. I would be equally unreasonable to expect her to execute impeccable discipline and precision in her cane usage. But forcing her to use a tool that will not serve her in the future will slow her down in the present and set a life trajectory of lowered expectations on a deficiency model. This is like forcing her to learn only large bubble letters before she is allowed to learn Braille. No! We have high standards for our life, and we expect the same for Marley.
I was expecting to be met with a different philosophy and lower expectations for a standard of independence, but I wasn't expecting to be met with condescension and disgust. This is not the first time some stranger in his/her ignorance has attacked Marley's progression. Past actions from the school include refusing Braille, physically taking her cane away, and holding her hand instead of letting her run with her classmates.
At what point does life experience have any validity in the face of a formal education? Are my words worthless because I don't have a degree in O&M? What am I supposed to do, get a masters in every aspect of my life to be able to advocate for my daughter? If there is any term I can think of that depicts what my daughter is up against, it is institutionalized discrimination.
by Terri Rupp, reprinted from the January 2019 issue of the Braille Monitor
From the Editor: Terri Rupp is the energetic president of the National Federation of the Blind of Nevada. The Nevada and Idaho affiliates are our hosts for the 2019 National Convention, and here is how Terri tempts those of us who will join her in Las Vegas:
We all waited anxiously for the big announcement last July revealing where the 2019 NFB National Convention would be held. I had my suspicions, but I would not confirm them to anyone. At the end of the national board meeting, when the final reveal was made, the crowd erupted with whoops of excitement. During the week of July 7 through 12, 2019, our Federation family will gather at the Mandalay Bay Resort in fabulous Las Vegas.
The first recognizable thoughts to make it out of my head from the news that the national convention was coming to my hometown were, “This is going to be great! Vegas isn’t going to be the same after #NFB19. Talk about an amazing opportunity: I get to welcome my Federation family to my hometown.”
It wasn’t until the excitement fizzled just a bit that the words of the worried ones reached my ears. As blind people, we are all too familiar with the common myths and misconceptions that surround blindness. The same goes for Las Vegas. When I asked my friends and family in Facebook-land what their first thoughts were when they thought of Las Vegas, I heard the typical things like: the Strip, casinos, shows, crowds, etc. Then there were these other responses: endless desert beauty, great healthy food choices everywhere, family, community, home.
We all have our expectations of what something might be like based on things we may have heard from others or watched in movies. Before my first trip to Las Vegas, I had those same thoughts. I had no idea that the city was more like a large, spread-out suburb. I naively thought the famous Las Vegas Strip sat in the middle of a sandy desert. I paid no attention to who those people might be that worked in those big fancy casinos. Those people who clean the rooms, prepare and serve the food, perform in the shows: those people are people just like you and me. They go home to families, take their kids to school, spend time outdoors in the gorgeous hills that our valley is nestled in, and go on vacations to national parks, Disney World, and other typical tourist attractions. These people are part of what make up my community. The community where my children were born, the community that came together and healed together after tragedy struck our loved ones on October 1, 2017. This is the city I am proud to call home.
If you are wondering what an NFB National Convention will be like in Las Vegas, you are not alone. We have grown quite accustomed to planning our convention week in Orlando. It’s about time for some change. For instance, travel to Las Vegas is extremely inexpensive by air and can easily be made by road from our neighboring states of Arizona, California, Utah, Idaho, and Oregon. We will no longer be limited to the same food choices we’ve been eating. Get your taste buds ready to experience an explosion of flavors from simple quick-service food to extravagant fine dining prepared by famous chefs. Are you wondering if convention in Vegas will be family-friendly? I’d like to point out that I have two young children myself. This convention, like every other convention, is an event for the entire family, from the young to the old. Just like the Federation has something to offer for everyone of all ages, so does Las Vegas. When you’re not busy soaking up what you can in our seminars and workshops, when you’re not in general session with a few thousand fellow Federationists, soak up the sun in the lazy river or wave pool at the Mandalay Bay. Just be sure to remember the sunscreen and stay hydrated. Not a fan of the heat? No problem. I actually highly recommend keeping a sweater with you at all times because the hotels are kept quite cold. You can spend your down time with the kids touching sting rays and sitting inside a sunken ship with sharks swimming around you at the Mandalay Bay Shark Reef Aquarium. Want to venture off the resort property? Your choices are endless. Take Uber or Lyft to get up Las Vegas Boulevard to downtown where you’ll find famous Fremont Street, and hop on one of the double decker busses known as the Deuce. Many hotels are connected by sky bridges and a monorail as well. Whatever your pleasure, just be mindful that you’re not the only tourist. Most people you encounter on the Strip will most likely be visitors just like you and won’t know where they are going either.
As you make your plans for the 2019 NFB National Convention, I suggest planning an extra day for your stay for play. Lastly: don’t forget the sunscreen.
Blindness Can't Stop Me from Living the Life I Want to Live on goodhousekeeping.com
Please read this article regarding to Terri Rupp at www.goodhousekeeping.com/health/a23132554/terri-rupp-blindness-optic-nerve-atrophy.
By April Corbin - September 4, 2018
Terri Rupp, a blind parent of two, blogs about her life at www.blindmomintheburbs.com. She is also president of the National Federation of the Blind of Nevada.
Kids get bruises. It happens.
Most of the time, outsiders think nothing of it, or assume they’re the result of simple playground tumbles. But when that child has a blind parent, minor scrapes and bruises are often seen by judgmental neighbors, social workers and family court judges as the red flags that prove they are incapable of raising a child.
“My biggest fear as a blind parent is that my kids will go to school with a bruise and someone will assume it’s from neglect,” says Terri Rupp, a legally blind parent of two.
Her fears are justified.
While specific data is hard to come by, parents who are deaf or blind “report extremely high rates of child removal and loss of parental rights,” according to the National Council on Disability. They have child protective services called on them at disproportionately high rates, and the resulting social service visits end with children being removed at disproportionately high rates. In divorce proceedings, a sighted parent is far more likely to be granted full custody of children over their blind or visually impaired partner. Similarly, adoption agencies regularly discriminate against the blind and refuse to consider them as prospective parents.
Here in Nevada, a local chapter of the National Federation of the Blind assisted a Virginia City woman who was deemed unfit to be a parent to her newborn daughter.
“Her baby got taken away at 1-month-old. She didn’t even get the opportunity to learn,” says Rupp, who served as an expert witness in the hearings and helped create a parenting plan for the woman.
Reunification of the child and mother happened this spring, but it took three years and a lot of jumping through hoops.
One oft-cited case in the blind community comes from Missouri, where a blind couple had their 2-day-old daughter taken from them in 2010. The event that triggered the removal: The mother was having difficulty breastfeeding, an issue experienced by many first-time mothers. The newborn was reunited with her parents after 57 days.
It shouldn’t come to these extreme measures, say Rupp and other advocates for the blind. And they want the Nevada Legislature to put in place parental protections to ensure that it doesn’t happen to anyone else.
Blind advocates have been working with a legislative committee focused on senior citizens, veterans and adults with special needs to draft model legislation that would prohibit discrimination against the blind in guardianship, adoption, custody or visitation proceedings. Ten other states, including Utah and Arizona, have already passed such legislation.
The committee, which is chaired by Assemblywoman Lesley Cohen, voted unanimously to submit the bill draft request.
Angela’s House, the only blindness skills training center in the state of Nevada, advocated for the bill, as did several blind parents and their children.
Raquel O’Neill, a licensed social worker who works at Angela’s House, told the legislative committee during a meeting last month that more could be done to educate social workers and others involved in the child welfare and court system about the blind.
For example, a social worker may be using a form that determines whether a child and parent are bonding by using criteria such as eye contact, eye gazing or eye tracking.
“The assumption is because you can’t see, you wouldn’t be able to do this,” says O’Neill, “but there are alternative ways.”
Children also bond through physical touch and sound. O’Neill knows firsthand. She and her husband are blind parents. While they were welcomed and supported by their Summerlin hospital during and after the birth of their son, she says she went to the hospital early, prepared to reassure the doctors and nurses of any concerns they might raise.
Blind parents shouldn’t have to do that, she says.
“As new parents, you’re already scared. To have a social worker come in and question your biggest fear. Am I good enough? Do I have the skills? Am I enough?”
She added there are can be valid reasons for removing a minor from the care of a blind parent, but the starting point of any evaluation should not be that the blind person is unfit. Protecting a blind person’s right to have a family and maintaining safety of children are not mutually exclusive.
The Americans with Disabilities Act prohibits discrimination against the disabled but its focus is on public spaces and access, not private homes and families. This leaves parental rights for disabled people in a grey zone that needs strengthening through additional protections, argue advocates.
“The ADA doesn’t talk about parenting as a life function,” adds O’Neill.
The question that comes up most often in conversations about blind parenting is this: How does a blind person know when their child is doing something wrong or unsafe?
Rupp, O’Neill and other blind parents say it comes down to knowing what’s normal for your child and using adaptive tools. Talking thermometers help monitor temperatures. Smart lights in the home can be put on timers and connected to audible noises to ensure that sighted children are receiving proper lighting. Specialized strollers allow blind parents to pull their child behind them (a safer position for the child than being pushed in front).
“People always go, ‘What if… What if… What if…'” says O’Neill. “There are always ‘What ifs.'”
Rupp says when her children were infants, she could hear whether they had something in their mouths based off their gurgles and giggles. As they became mobile, she tied bells to them so she could hear where they were in a room. When she began taking her kids to the park and her youngest thought it was funny to hide under the slide from her, she just listened for those bells.
The bells are no longer needed but mom still knows when something is up.
“You know when they’re acting abnormally,” says Rupp. “If they are normally really loud and always talking and always engaging but now they’re being quiet? You know.”
Rupp says every parent — sighted or totally blind or somewhere in between — does things in his or her own way. Kids understand and adapt to it. She believes her children have better verbal skills than their peers because they learned from an early age that they couldn’t just point to things.
“They know mommy sees with her hands,” she adds. “They bring it to me. They know.”
(This is the first of a two-part exploration of the rights and resources available for blind people living in Nevada. Later this week: A look at the challenges blind students can face in schools).
BELL 2018 Conclusion Thank You
By Terri Rupp, NFBNV President
This week, the National Federation of the Blind of Nevada rocked #NFBBELL thanks to the support of the Nevada Blind Children's Foundation. 6 students had fun learning Braille, daily living skills, how to use the long white cane, and that blindness does not hold you back to living the life you want. We could not have pulled it off without our teachers and volunteers: Aaron Rupp, Jason Alamillo, Megan Bolton, Kimberly S Bolton, Terri Rupp, and a special thanks to Conchita Hernandez Legorreta.
By Mark Anderson | Las Vegas Review-Journal
When John Sterling read an article last summer in “Runner’s World” about a blind runner who competed in the New York City Marathon, he identified with how the athlete trained for such an important race.
Inspired and wanting to help other visually impaired runners, Sterling called Achilles International, which is dedicated to assisting such athletes.
Sterling was told no Las Vegas chapter existed, so he created one.
Then he called the National Federation of the Blind of Nevada, and President Terri Rupp answered. Getting back into running already was on her mind, and they began to run together in December.
“I love running because to me, running is my zen,” Rupp said. “Running allows me to get out of my head and get out of my to-do list. Along with being a stay-at-home mom, I teach Braille; I am constantly planning events. I’m very Type A where I’m a goal-setter, and when I run, I’m able to just be and just not to have to worry about everything else.”
Rupp is fairly new to running but is hooked. She competed in a recent half-marathon in Henderson, finishing 37th with a time of 2:49:09.5.
Rupp, 35, is training to compete in the Rock ‘n’ Roll Marathon on Nov. 11 on the Strip.
“I’ve always had a bucket-list item to run the Rock ‘n’ Roll Marathon, and being a local Las Vegan, I would love to have that be my first marathon to check off my list,” said Rupp, who lives in Southern Highlands.
She is mostly blind and might eventually lose all of her vision because of degenerative condition called optic nerve atrophy. Rupp, who began to see the effects when she was 8, can sometimes make out colors and shapes as well as “contrasts of movement,” but details are difficult.
Rupp, married to a Clark County firefighter, has an 8-year-old daughter, Marley, and a 6-year-old son, Jackson. Marley also has the condition.
“I notice all the time what she can see and what I can’t see,” Rupp said. “So it wouldn’t really bug me all that much if I lost all my eyesight, because the only thing that really sets me apart is I can’t drive. That doesn’t hold me back from doing what I want to do. I still get around well. I’m more active than most people I know.”
Contact Mark Anderson at email@example.com. Follow @markanderson65 on Twitter.
Achilles International Las Vegas Chapter
Contact: John Sterling
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