National Federation of the Blind of Nevada
Live The Life You Want
Terri Rupp, President
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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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