Media Interviews

What Blind Parents Want Us to See

By Diane Debrovner, Parents Magazine

These moms and dads approach life with a creative, can-do spirit and are endlessly resourceful. They’re not looking for more attention, but they do deserve respect.

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For the millions of people who watched the Netflix movie Bird Box, it was hard to decide what was more terrifying: the apocalyptic nightmare in which seeing a nebulous monster forces you to commit suicide, or the prospect of protecting your children from imminent danger while blindfolded. Sandra Bullock’s badass character proved two things blind moms and dads know: When you love your kids, there is no obstacle that you can’t overcome—and parenting without sight is undoubtedly doable.

Blind parents aren’t action-adventure heroes in real life, but they do find smart solutions to the relentless challenges that come their way. That means keeping their kids safe on the playground as well as dealing with everyday tasks like cooking dinner and measuring medicine. They are not flying blind—they’re thinking strategically.

However, they constantly confront other people’s skepticism about their abilities—often from the day their baby is born. It’s common for social workers and other hospital staff to question whether a blind parent is capable of being a good parent. We all talk about being authentic and embracing our imperfections, but that can be tougher for blind parents who feel they need to look like they’ve got everything under control all the time. If they could tell other moms and dads what’s really on their mind, here’s what they’d share.

We’re not “amazing.”

It may be unfathomable for some of us to imagine how one could juggle all the responsibilities of parenthood without being able to see. “People say it’s amazing that I can walk down the sidewalk or take out the garbage or cook a meal for my family,” says Debbie Kent Stein, a mom of one in Chicago. But even when someone intends those comments as compliments, they’re insulting.

Blindness isn’t the same experience that we have when we close our eyes. Although there is a range of blindness (you can have some degree of sight yet still be legally blind), most blind parents have been that way for many years or their entire life. “We do everything else blind, so parenting as a blind person is perfectly natural for us,” says Stein.

Having a positive attitude is crucial. “Every day, I make a choice,” says Holly Bonner, a mom of two from Staten Island, New York, who lost most of her sight as a result of breast-cancer treatment before her kids were born. “Do I let the stresses of parenthood get to me, or do I search for the bright side? Refocusing my attention on what really matters in life is my motherhood-coping mechanism,” says Bonner, who blogs at BlindMotherhood.com.

We just have different ways of doing things.

Many blind parents attach jingle bells to their babies’ and toddlers’ shoes so they can hear where their kids are. They put braille labels on foods in their cabinets, bumpy stickers on microwave buttons, and puffy-paint markings or notches on their kids’ medicine syringes. Their children’s books and board games have both type and braille, and they pull their stroller instead of pushing it to make it easier to walk with their cane in front of them. They buy talking thermometers and triangular crayons that won’t roll off the table. To spoon-feed their baby, they first touch the baby’s cheek or chin with their pinky to help locate his mouth. “It’s not that our other senses are heightened, but we have learned to pay attention to them more,” says Melissa Riccobono, a mom of three in Baltimore, whose husband is also blind.

We usually don’t need help, but we appreciate the offer.

When blind parents are walking in the street with their kids, they may stop at a corner and seem lost. “Chances are, we’re just taking our time to listen to the traffic and decide whether it’s time to cross,” says Ashley Nemeth, a mom of three in Regina, Saskatchewan, who blogs at BlindMovingOn.com. “The scariest thing is when a stranger just grabs my arm and starts taking me somewhere—it’s very disorienting.”

It’s always thoughtful to ask if there’s any way you can be of assistance. “I’ll usually respond, ‘Thanks so much—I’m good,'” says YouTuber Joy Ross, a mom of two in Camas, Washington. “But there have been times when I’ve been at the mall with my guide dog and simply wanted to locate a seat to rest and collect myself, and I wished someone had stopped and asked if I needed help or offered me a chair.” (As cute as a guide dog is, don’t talk to it or pet it while it’s working. You’d be amazed how many people do, says Nemeth.) If you have a neighbor who’s visually impaired, give her your phone number and let her know that she’s welcome to call if she’s ever in need.

We can help too.

Blind parents want to be treated like every other person who has something valuable to contribute. For example, they may want to volunteer in their child’s classroom, but the teacher might not invite them. “One mom I know signed up to help with a back-to-school party and brought snacks and drinks and cups, but when she got there, the other moms plunked her down in a chair and left her alone,” says Stacy Cervenka, a mom of two in Lincoln, Nebraska, who leads the Blind Parenting Group of the National Federation of the Blind. Instead, they could have taken a few minutes to describe the room to her, tell her what still needed to be done, and ask how she’d like to help.

“When it came time for the Halloween bake sale at my daughter’s preschool, one of the moms told me that they didn’t want me to bake anything because they were afraid to have the children eat it,” says Bonner. “They didn’t think I could cook, even though I cook for my family six nights a week.”

Transportation is our biggest challenge, so feel free to offer us a ride.

The most significant thing that blind parents can’t do is drive. They use public transportation and paratransit services, or walk everywhere with their kids. The availability of Uber and Lyft has been a major game changer, but it’s expensive. If they sign their kid up for gymnastics class across town, they may have to build in the cost of a $15 Uber ride both ways. And they have to bring their own car seat—and carry it with them when they get to their destination.

They may hesitate to ask other people for a ride but always appreciate one. Terri Rupp, a mom of two in Las Vegas, who recently ran her first marathon, started a moms group after her first baby was born. “Many of these women have become like family,” says Rupp, who blogs at BlindMomintheBurbs.com. “Whenever one of them has room in her car, she’ll call me and say, ‘Hey, we’re going to this new play space, do you want to come along?’ ”

We take care of our kids. They don’t take care of us.

When Stein’s daughter was 3, people would say, “Are you taking your mommy out for a walk?” or “You must be such a big help to your mommy at home!” Stein had to come up with polite responses, such as “Yes, she picked up her toys this morning.” If strangers would try to give her daughter directions, Stein would say, “She’s only 3, so I think it would work out better if you explained them to me.”

We can keep kids safe.

There’s no research or even anecdotal evidence showing that kids of blind parents are more prone to injuries or accidents than anyone else. At home, when blind parents cook dinner, they put their child in a play yard or high chair—just like the rest of us. They lock up their poisons, keep choking hazards off the floor, and make sure the sharp corners on the coffee table are covered.

“We hold hands outside, set up meeting places, establish boundaries for where our kids can go, and use a ‘Marco Polo’ style of communication if they’re not right next to us,” says Mary Jo Hartle, a mom of three from Lutherville, Maryland, who blogs at MakingItonthePlayground.com, and whose husband is also blind.

When Ross’s girls were young, they wore a life jacket at all times around the pool, and in other situations she dressed them alike so that they were easily identifiable to others if they got separated from her. To prevent her kids from getting sunburned, Nemeth uses sunscreen lotion, which is easier and safer to control than spray, and she makes sure that they always wear UV shirts and hats.

“In some ways, we’re even better at monitoring our children because we are used to using our ears and our other senses,” says Riccobono. But it hurts when other parents aren’t comfortable sending their kids over for playdates.

Technology has changed our lives.

Every iPhone has settings that can read texts and email out loud, and blind parents wear wireless headphones so they can listen inconspicuously. Screen-reading software and apps let them read anything digital and hear descriptions of photos, and it’s helpful that need-to-know info from school is increasingly being shared via email or school websites. With their kids, blind parents can watch movies and TV shows that have audio descriptions, which narrate what’s happening on-screen. They use Facebook and Instagram to stay in touch with family and friends (it’s helpful when others include photo descriptions) and offer support and advice to each other online.

With a subscription service called Aira, blind people can make video calls on their phone or use smart glasses to get help from trained agents for simple things like reading instructions or an expiration date on a product. Similarly, the free app Be My Eyes connects users with millions of sighted volunteers. Bonner, a social worker who teaches graduate school, relies on a small new device called OrCam, which attaches to a pair of glasses, takes a photograph of any text (a sign, a paper, a screen), and then reads it aloud. There are also older devices that can identify colors, dollar bills, and supermarket items by their bar codes.

Don’t feel sorry for our kids.

Blind parents have been accused of being irresponsible for having children and bringing them into a difficult setup, when in reality their children are thriving. In fact, because their parents talk to them constantly, kids often have particularly advanced verbal skills. Nicole Fincham-Sheehan, of Palm Beach Gardens, Florida, was a 19-year-old single mom when her first child was born. (She’s now married and just had her third child.) While working two jobs, Fincham-Sheehan finished college and got her daughter into private school. “My daughter always did a lot of extracurriculars—you name it, she did it—tennis, soccer, dance, karate, cheerleading,” she says.

Young kids don’t see their parents’ blindness as a big deal. “Our 4-year-old just understands that in order for Daddy to see something, Daddy needs to put his hands on it,” says Cervenka. “He’ll say, some people are blind and some are sighted, just like some people are boys and others are girls, and some have tattoos.”

Our kids don’t get away with a lot just because we can’t see them.

“Every parent knows that when it’s too quiet, you’d better go check on your child because she’s probably doing something she’s not supposed to be doing, like coloring on the wall with markers,” says Riccobono. Her kids sometimes try to sneak candy, but then she’ll find the wrappers on the floor. “I can tell from the way my kids talk whether they’re telling me the truth,” says Hai Nguyen Ly, a blind dad of two in Florence, Massachusetts.

When it comes to discipline, rules are nonnegotiable. If a parent calls out to his children at the playground, they must respond immediately; if not, they have to go home. “We like to say that we are free-range parents,” says Greg DeWall, Cervenka’s husband, who runs a training center for the blind in Lincoln, Nebraska. “We trust our kids and have established that level of trust because we set boundaries from the beginning.”

We wish you’d step beyond your comfort zone.

If you’ve never met a blind parent before, you might feel awkward or be unsure if you should look her in the eyes. “Nowadays we’re all scared that we might offend people, so it can seem easier to just avoid interacting with a blind person,” says Nemeth. “But I always encourage people to ask me questions.” In other words, just treat her the same way you’d treat anyone else. Adds Hartle, “It would be great if other parents would approach me and see me as a regular mom, and not as ‘the blind mom.’ My husband and I always try to show people that we’re comfortable with our blindness because that helps put them at ease.”

Blind parents face challenges, new protections – Wandtv.com, NewsCenter17, StormCenter17, Central Illinois News

Posted: Feb 06, 2018 6:47 PM EST
By: Joe Astrouski

SPRINGFIELD, Ill. (WAND)- For Rachel Schroeder, becoming a mother wasn’t easy.

After a divorce, she had hoped to adopt but found challenges.

Schroeder is blind.

“I met roadblocks the whole way about trying to adopt and even go into foster care,” Schroeder said. “They would say they would want to work with me but wouldn’t follow through or do everything they could to discourage me.”

Eventually, Schroeder conceived through in vitro fertilization and gave birth to her daughter, Delaney.

“I had people that were concerned,” Schroeder said. “They probably thought I was crazy for doing it, and at times I thought I might have been crazy for doing it, but ultimately, through my whole life, I’ve had the attitude that if I want to do something, I’m going to find t he way to do it.”

But parents who are blind say, even after they have children, they still encounter challenges and biases.

Patti Gregory-Chang, an attorney from Chicago who works with the National Federation of the Blind of Illinois, said she has often encountered cases in which parents are kept from bringing children home from hospitals or are denied custody in divorces, even after serving as a child’s primary caregiver.

“It’s often an attorney who’s doing the best they can for their client, but raises the blindness and says ‘Well now judge, you have to do what’s best for the child, and it’s not good for a blind parent to take care of a child,’” Chang said.

Chang, a mother of two grown children, said blind parents can parent effectively with help from others in the blind community.

“Just because a sighted person can’t do it tomorrow doesn’t mean a blind person can’t competently do it today,” Chang said. “I travel every day. You probably can’t conceive of traveling being totally blind. But I do it and have the experience doing it. Parenting’s the same way.”

In 2017, the Illinois General Assembly passed a bill forbidding blindness alone from deciding custody or participation in adoption or foster care. Still, advocates for parents who are blind say they still have work to do.

“The law only says what shouldn’t happen, so now DCFS has to come up with the regulations,” said Denise Avant, President of the National Federation of the Blind in Illinois. “We … have contacted the department and said, as you’re developing regulations and training, we would like to help.”

Even with the new law in place, Schroeder said parents still worry the biases of others could affect the relationships of blind parents and their children.

“Unfortunately, there is that fear that, and I’ve heard it from other people … that if I take my kid to an ER, their first thought is going to be this incident, whatever it might be, happened because I’m a blind parent,” Schroeder said. “That shouldn’t be the focus.”

Chang also pointed to several online resources for parents who are blind, for attorneys and social workers, and for government workers.

To view the video, please visit www.wandtv.com/clip/14108138/parenting-blind.

Accessibility matters: Experts and lawyers with disabilities help bars find, eliminate barriers

By Robert J. Derocher
Bar Leader, Volume 42, Issue 2

Legally blind since the age of 12, Chicago attorney Patti Gregory-Chang has encountered her fair share of ignorance and patronization regarding her disability.

The one place where she didn’t expect that experience?

A bar association meeting.

“I came in to register, and the woman at the desk said, ‘Oh, honey, this is the bar association. Where are you trying to go?’ says Gregory-Chang, a lawyer for three decades. “I’m sure she meant well, but the message she sent was not good, it was not welcoming.”

As a member of the Disability Law Committee of the Illinois State Bar Association, Gregory-Chang has long advocated for lawyers with disabilities, educating fellow bar members-and staff-on how to better meet their needs, as well of those of the public. One part of that role, she says, is to serve as a bit of a bar gadfly.

“The bar is improving, but I’ve been pestering them for a while,” she adds.

While sometimes frank and even uncomfortable, that direct dialogue is critical to creating more accessible associations, according to disability rights advocates and bar leaders. Although such discussions-both inside and outside the bar-can help address short-term accessibility challenges, they say, it also has long-term implications. Increasingly longer life spans and later retirement ages may make it more likely that bar associations will see more members facing disabilities, with hearing and vision loss and decreased mobility and cognitive abilities being the most prevalent.

Knowing where accessibility challenges lie and addressing them immediately, many experts say, will make bars of any size more available and welcoming to all members-both now and in the years ahead.

Making the bar accessible for all

At the heart of accessibility for bar associations and any organization is the anti-discriminatory Americans with Disabilities Act. The 1990 civil rights law imposes legal requirements for such associations to provide accessibility for people with disabilities to a wide range of activities, from meeting places to learning and licensing events such as continuing legal education.

“There are more and more people with disabilities entering the profession. They want full access to the bar and certain events-and they should get it,” says Robert Gonzales, chair of the ABA Commission on Disability Rights. Gonzales is also a past president of the Bar Association of Baltimore City, the Maryland State Bar Association, and the National Conference of Bar Presidents.

Accessibility is a key component not only of planning for Commission events and activities, according to Gonzales, but for all ABA events. “If it’s not accessible for one, it’s not accessible for all,” he says. The place where planning for many ABA events and activities begins, Gonzales notes, is the Commission’s planning toolkit.

Accessibility, he adds, extends far beyond a ramp for wheelchair-bound lawyers. Sign language and captioning for the hearing impaired, Braille and speech-synthesizing screen readers for the visually impaired, and materials and assistance for people with speech and cognitive disabilities are just some of the accessibility accommodations increasingly made for bar members.

“I think being fully ADA compliant involves lesser known disabilities such as cognitive disabilities,” agrees Doug Knapp, director of electronic communications for the ISBA. “We have focused on making our website, and our vendors’ websites, accessible to screen readers, as well as being able to navigate by keyboard, because we know of members who need these functions.”

A key player in Knapp’s efforts: Gregory-Chang, also a former attorney for the city of Chicago and director of outreach for National Federation of the Blind, where she previously served on the executive board. Gregory-Chang has served as a sounding board and tester for the bar’s website efforts.

“She has given me a huge appreciation for how difficult it is. It really requires a different kind of skill set. You gain an appreciation of what blind people have to go through,” Knapp says. “The testing on [screen readers] can be brutal.”

Barriers often hide in plain sight

While Gregory-Chang has appreciated the opportunity to help Knapp, she says bar associations can-and should-do more to improve accessibility. Offering a DVD in place of a CLE event, for example, is not the same, she says.

“If you really want to welcome people with disabilities, you actually need to listen to them. Welcome disabled attorneys to talk to your staff. Maybe elevate some of these disability and diversity committees to practice groups or section councils,” Gregory-Chang advises. “Diversity is more than race and gender.”

Leaders of the Monroe County (N.Y.) Bar Association were listening when members complained about accessibility shortcomings two years ago, says Kevin Ryan, the bar’s executive director. What followed was a comprehensive anti-discrimination policy that soon led to a problem quite close to home, as bar leaders realized that they weren’t in conformance with that policy: A set of men’s and women’s restrooms in the bar’s offices were not accessible. The bar’s board approved a $20,000 outlay to create two unisex restrooms, with one of those fully accessible. “Now, we’re following our own policy,” Ryan notes.

The new policy has also been helpful in addressing issues that the bar thought it had addressed previously, according to Ryan. For example, a table that could accommodate wheelchairs had been set aside in a meeting room. The bar consulted with a local disability rights organization and discovered that it was unintentionally segregating members using wheelchairs. The bar also obtained chairs on wheels that allow greater flexibility in seating people with disabilities.

The consultant from the disability rights organization continues to assist the bar, Ryan adds. “She’s been able to get us resources, and she helped us develop a checklist [for bar-sponsored events]. It’s been helpful to reach out to someone in the community who is aware of how these things should be done. She’s been a big help.”

The checklist led to a shakeup in bar events, with some traditional bar event venues being dropped because of lack of accessibility. And a planned change in the bar’s main reception area will lead to a new desk that is an appropriate height for people with disabilities.

“We now see things that we didn’t once see,” Ryan says.

‘An increasingly hot topic’

One thing bar associations are likely to continue seeing is an increase in aging bar members with disabilities, says Pamela Hoopes, legal director of the Disability Law Center at Mid-Minnesota Legal Aid, which is a state-designated protection agency for the ADA. In December 2017, Hoopes facilitated a webinar for the National Association of Bar Executives, focused on disability and accessibility.

“Lawyers tend to retire later than a lot of other professionals, and there are challenges that come with that,” she explains. “It will be an increasingly hot topic.”

One task that Hoopes recommends for bar associations to start in their quest to be ADA compliant-or even better than compliant-is to carry out a self-audit. Each state has an agency similar to the MMLA that can provide resources to assist in a self-audit and subsequent compliance efforts.

“We try to encourage proactive steps,” Hoopes says. “It’s not just about compliance. It’s really about protecting civil rights.”

She also encourages bars to either establish disability rights committees or to emphasize the need to address such issues through access-to-justice or diversity committees, as well as working with the state and local judiciary to carry out joint efforts to improve accessibility in the courts.

On the national level, Gonzales says the ABA is increasing efforts to foster technological advancements that will lead to improved accessibility for lawyers and everyone accessing the legal profession. Part of that effort, he adds, is encouraging some of the nation’s top law firms to develop comprehensive accessibility plans.

While much still needs to be done, Gregory-Chang says, the increasing efforts by law firms, bar associations, and the courts to improve accessibility are being noticed by people with disabilities-particularly those who have worked to hide their disabilities over the years, such as the hard of hearing and people with epilepsy and mental health issues.

“You really have to train your staff, and work to make [bar associations] welcoming, inclusive environments,” she says. “We want equal access. We want to participate fully.”

Additional resources

Multiple resources are available to help bar associations evaluate their accessibility needs and to make improvements. They include:

Several sites for improving website accessibility and technology, including:

About Bar Leader

Bar Leader, published by ABA Publishing for the ABA Division for Bar Services, covers news and issues of interest to elected officers and staff members at state, local, and special-focus bar associations. Articles are intended to generate ideas readers can apply at their own bars. The opinions expressed do not necessarily represent those of the American Bar Association. Bar Leader is available online to constituents of the ABA Division for Bar Services.

Visit the ABA Division for Bar Services

Program that helps visually impaired faces shortage of teachers in the Chicago Tribune

wzrd radio featuring Gary Arnold, Access Living (April 30, 2017)

Blind Bargains Audio: Featuring the BB Qast, Technology news, Interviews, and more: #CSUNATC17 Audio: The KNFB Reader for Windows Unveiling

https://overcast.fm/+xvicfsxw/19:25

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