Living DeafBlind in Iowa

Narrator: This program is available with audio description.

This program is made possible by the Corporation for Public Broadcasting.

And by The Arthur Vining Davis Foundations.

In early February of 1925, the American Foundation for the Blind brought author, activist and lecturer Helen Keller to advocate on behalf of the blind community in Iowa.

Miss Keller, her teacher, Anne Sullivan Macy, and Charles B. Hays, the director of the American Foundation for the Blind, appeared before the legislature on behalf of a bill introduced by Iowa Senator White of Tama County.

The bill would create a state committee to supervise in training and educating Iowa’s blind. And on April 2, 1925 the Iowa Commission for the Blind was established.

It was a continued step in helping Iowa’s blind community achieve equality through employment and education.

The impact of Helen Keller’s advocacy is still felt today.

Here are other stories of people Living DeafBlind in Iowa.

(Photos display a baby lying on a blanket.)

Rita Fredericks: Miles was born a typical child and at four weeks old he started having seizures. In the process of learning about why Miles was having seizures at such a young age, which is not typical, we discovered that Miles has a really rare genetic mutation.

(A man and woman sit in their living room.)

Rita: My name is Rita Fredericks and with me is my husband.

Nate Fredericks: I am Nate Fredericks and we are parents of a child who is deafblind.

(Miles sits smiling beneath a number 5 birthday balloon.)

Rita: Miles has eyes and ears that function but his brain does not want to process the vision and the hearing that comes through. Miles is otherwise physically disabled as well as cognitively or intellectually disabled.

(Rita swings with Miles in her arms.)

[Miles giggling]

Rita: He is a very joyful, happy child. He really loves to spend time with people and to be touched and to feel others around him. Miles is non-verbal. That is not something that will change for Miles. He also doesn't have good movement or use of his hands to try to learn Sign Language or to try to use Braille as an option. His communication isn't super formal but it's formal for our family and it's formal for Miles and that comes in the forms of different squeals, different tones, different loudness, different ways that he holds his feet and his legs, different ways that he might move his arms.

There's a lot of those small clues that you have to pay quite a lot of attention to and of course it took a lot of time for us to understand the development of that communication for Miles. We call them gestures. We have a gesture dictionary and it is videos or descriptions of these gestures so that when there's someone new they might be able to understand more quickly.

(Miles sits in a chair with drums at his feet.)

For Miles, when he was really young and prior to us knowing and understanding all that he is, he would get really irritated in the bath. So, if you can imagine, Miles has no access to that incidental environmental information. So he does not hear the bath water running or the shower coming down or that he's in the bathroom, for instance, versus in his bedroom or in the living room. So now when we go to give him a bath, you know, we present some water, put his foot in the bathtub. If we can use some of those contextual environmental clues we can give him more information and we can create meaning around this routine.

(At home, Miles sits in a swing.)

Nate: We have a couple of different swings that we have put in the house to give him some different areas on the floor with some soft tiles where he can explore. He’ll just kind of maneuver and it’s just really exciting to kind of see where he ends up and know what that might tell us about him and his day and how he is feeling that day. He is kind of a little explorer.

(Miles' brother, an older boy, unwraps a gift.)

Rita: We also have a son, Liam, who is 10 currently. Liam really enjoys being a big brother. He has really learned quite a lot about taking care of someone.

(Liam sits in a chair as he's interviewed.)

Liam: I show my brother that I love him by... I cuddle with him, I pester him a lot.

Liam: I worry about him from day-to-day. He pukes a lot, so I help with the cleanup part. I brush his teeth a lot when my parents are doing other things.

(Rita and Liam push Miles on a playground roundabout.)

Rita: Let's see if we can get you going fast.

Liam is pushing him right now on an in-ground merry-go-round. So it's something really big that Miles can feel. As we're spinning and he starts moving his feet and he starts raising his hands, that is how we know he's enjoying it. His eyes came open.

(Miles rides on a swing.)

Even though we have great information about Miles and we know what he loves to do, his epilepsy and his seizures take away from us some of the communication that we typically have with Miles. That has been very hard.

(Miles moves his hand around.)

Today he's not showing a lot of excitement or happiness. But we can still tell he's alert, his eyes are opening.

(Liam holds Miles as they ride down a slide.)

We like that he is friendly and accommodating and that he is flexible with us and he is very chill and goes with the flow.

(In a park, Miles rides in a wheelchair.)

We go hiking as far as we can with Miles in the wheelchair. It doesn't scare us. Liam really loves to swim. In fact, Liam and Miles both love to swim.

(Miles swims with a tube.)

Liam is on swim team and has been on swim team for some time and all of the pools that he would go swimming at were not handicap accessible. And so those were activities that we just, we couldn't take Miles to. And so if both of us wanted to be at a swim meet then we had to really think through who was going to take care of Miles in our absence and those folks are very limited in number. People get very nervous to take care of him and to be responsible for him. There's a lot to think through.

(In a hospital, Miles wears mesh bandages.)

Rita: You know, I think in all of the challenges that have come with having Miles, there's a lot of wonderful life lessons and joys, things that we have learned from having a child like Miles.

(Miles rolls over a piano mat.)

We're certainly closer as a family. I think that we have had a lot more opportunities to be home together and to experience some new environments like the therapy clinics and in that we have met a lot of new families, new friends.

(Miles lies on a pillow, stretching his arms and legs.)

As far as Miles' future goes, our goal is to make sure that he attends school and that he gets out of school what he is able to and that we teach him and try to create some more meaning in different activities so that he has some other things that he understand with his body or his mind, his cognition, and some additional people in his life.

(Miles sits in his drum chair.)

He does have a shortened life expectancy. There is a lot of grief in parenting and understanding the work that has to be done around knowing that you're likely going to outlive your child and the likelihood is very high and that there is a really high likelihood that your child will not always live in your home but will always need the full care. When the time comes and when we're ready to make decisions or choices that are different than Miles being in the home as he is right now with all of us, we don't feel afraid anymore.

Nate: Just that type of knowledge just really enables you to take it one day at a time, one week at a time, one month at a time and just knowing that tomorrow is going to be another day and we've just got to work to make sure it's going to be as best as it can.

(A photo shows Liam and Miles smiling in a field of sunflowers.)

Narrator: Rodenna Frank was born in the Philippines and it took a while for her family to realize she was deaf.

(At home, Rodenna signs with her interpreter.)

Rodenna: My parents never knew I was deaf until I was 3 years old. But she would call my name many times, but I would never answer her and that was when she took me to the doctor, my mother. And the doctor said that I was deaf.

(Outside, Rodenna walks with her interpreter.)

Narrator: When Rodenna was 9, she began attending elementary school and learned Sign Language. But when she was 10, Rodenna began having trouble with her vision.

Rodenna: When I started having vision problems I couldn't read my mom's signing. So she put my hands on hers and she started to communicate with me that way.

(A diagram outlines Usher 1F Syndrome.)

Narrator: Rodenna has Usher Syndrome, a condition where a person experiences partial or total hearing loss and vision loss that worsens over time. She became completely deaf and blind.

(A photo shows Rodenna and her husband in a park.)

Narrator: Today, Rodenna, or Ro as most call her, lives in Marion, Iowa with her husband Dave. Together they raised two children.

(A photo shows her son's family.)

Rodenna: We have one boy and one daughter.

(In a photo, Rodenna smiles with her adult daughter.)

Rodenna: My husband signs with me, yes, and my daughter as well. My son is so-so. He communicates some. Well, he can read my signs but he prefers to use a lot of spelling when he signs to me and communicates with me. So it's more finger spelling than signs.

(A photo shows Rodenna and Dave in a park.)

Narrator: Ro is very independent. When her children were young she homeschooled them with help from her husband.

(At home, Rodenna signs with her interpreter.)

Rodenna: Yes, I homeschooled my own children for six years, six years from eighth grade to eleventh and twelfth grade. We did videotape classes and then I would check their work and my husband together we would check their work.

(At a pizza restaurant, a co-worker takes Rodenna's temperature as a COVID-19 safety measure.)

Narrator: Ro also works part-time at Pizza Ranch in Marion working in the dish room.

(She holds out her walking stick and heads behind the counter.)

Rodenna: I know my way from outside through into the dish room and I know my way around. (In the dish room, she feels around the shelves.)

Sometimes if the things aren't in their regular place I need to ask somebody to help me find that item.

Narrator: Ro hopes that by her working as a deafblind individual, others will understand how capable she and people like her can be.

(She stands at a sink and turns on the faucet.)

(At home, Rodenna signs.)

Rodenna: I want them to see that deafblind people like me, they can do their jobs well.

(The interpreter walks her to work.)

Narrator: Ro works with the help of an interpreter who takes her to and from work and stays with her to help her communicate with her co-workers at Pizza Ranch. Transportation is the biggest challenge for Ro.

(Rodenna sits at home.)

Rodenna: I want to be able to start using transportation to get to my work and be independent that way.

(At work, Rodenna washes dishes.)

And I would like for people in the dish room to be able to work with me and communicate on a very basic level without an interpreter there.

(Rodenna feels the sides of a container in the sink.)

Narrator: Ro enjoys getting out and working at Pizza Ranch, but her home is her happy place where she has many hobbies.

(At home, Rodenna uses a keyboard with braille pins.)

(Smartphone sends Ro's text messages to her braille device.)

Rodenna: I can do things and I am able to use the computer with Braille. I use the iPhone with other people also. I enjoy knitting, cooking and reading library books from the library at Iowa Department of the Blind.

(Rodenna uses her keyboard.)

(Adaptive device speaking.)

Narrator: Technology has helped Ro communicate with her family and friends.

(​​Rodenna signs with Dave.)

Dave: So yes, she is able to communicate and text to pretty much anybody she wants to and she is a great help. You can communicate with your family in Florida and message them, do both emails or text messages. Yeah. We do FaceTime with family down in Florida, with my husband's help. I can't do it alone because I can't see the screen on the phone.

So it works well, it does. But it's great for her. It gives Ro an opening into the world that she would not otherwise have.

(Rodenna washes at work.)

Narrator: From the outside, living deafblind looks difficult. But Ro insists her life is, as she calls it, normal.

(At home, Rodenna signs with her interpreter.)

Rodenna: There's just not a whole lot to share about myself. I do things other people do. It's an average normal life.

(​​A photo shows Rodenna smiling with her family.)

[Music]

(In a house, a blond-haired girl plays in a ball pit.)

Ricky Teed: Were you hiding?

Hannah, she's our second child and she was the one born with CHARGE Syndrome. There are physical limitations that come with her diagnosis. And the CHARGE Syndrome has been what makes her deafblind.

(Hannah sits with her mother and father.)

Samantha Teed: Hi, my name is Samantha Teed and I'm here with my husband Ricky Teed.

Ricky: We're proud parents of five kids.

Hannah: Teed: Hi, my name is Hannah and I'm 11 and I'm deafblind.

(Photos show baby Hannah in the hospital.)

Ricky: So, Hannah was born to us and right away there were some issues. And so the doctors were taking care of her and running a lot of tests on her. One of the doctors was able to diagnose Hannah at two days old with CHARGE Syndrome. And because of that she is deaf and she is blind, which gives her the deafblind diagnosis among other sensory losses that she has.

Samantha: In the beginning it wasn't really that we were focused on interventions of what can we do for her hearing and her vision, but what do we need to do to keep this child alive, because she has got a heart condition and this and that.

(Samantha turns to Hannah.)

Samantha: Anything you want to share with us about your life or your family?

Hannah: I was a very small baby, like very tiny, I had to have heart surgery. That's why I have that scar on my chest.

Samantha: That's right. What else?

Hannah: And by the time I turned 6 months old I started using Sign Language.

Samantha: Yeah. Can you tell us about your hearing?

Hannah: I don't really hear that much with my left ear when I don't have a hearing aid on. But I do if I take this one off and I still can hear because of my right ear hears much better.

Samantha: Right, because you're considered deaf in your left ear and you have moderate hearing in your right ear, right?

Hannah: Yep.

Samantha: Yeah. And what are some other ways you communicate? What did we use first to learn how to communicate?

Hannah: Sign Language when I was only 6 months old.

Samantha: And do you communicate with Sign Language for your friends that are deaf?

Hannah: Yes.

Samantha: And how about when you're learning at school, do you use Sign Language?

Hannah: I use my voice for people who don't know Sign Language.

Samantha: And so you can do both, you speak and you sign. Do you prefer to speak or sign when you are talking to others?

Hannah: I prefer to speak.

Samantha: To use your voice.

Hannah: Yeah.

(Hanna rides an adaptive bicycle.)

Samantha: For your vision do things need to be far away or close?

Hannah: Close.

Samantha: Why?

Hannah: Because I can't see far away.

Ricky: And how close do you need like a book when you're reading?

(Hanna holds her hand in front of her face.)

Hannah: This close.

Ricky: Yeah, about four inches.

Samantha: And do you -- what type of equipment do you use to help you see better when you need to?

Hannah: I use a globe.

Samantha: So what does your globe do?

Hannah: It makes things bigger.

Samantha: Mm-hmm, like a magnifier, huh?

Hannah: Mm-hmm.

Samantha: And then what does your mat connect to? What do you use that for at school?

Hannah: To blow things up.

Samantha: It blows things up.

Hannah: Yeah.

Samantha: You can zoom in and you can make things bigger.

Hannah: Yeah.

Samantha: It's kind of like your eyes in a classroom, huh?

Hannah: Yeah.

Samantha: Yeah. Anything else? What are some of your favorite things to read about or learn about? You like maps.

Hannah: Yeah.

Samantha: Why do you like maps?

Hannah: They take me somewhere.

Samantha: Because they take you somewhere? That's right, they do, don't they?

(Hannah stands on a beach at dusk.)

Samantha: We have never let the diagnosis define her. Hannah is not her syndrome. And even though she has these things that make life more difficult they don't define her, she defines herself.

(Hannah climbs a jungle gym.)

Samantha: She is in fifth grade this year. With the assistive technology and devices that she has she is able to test out and be at the level that her peers are, so similar to somebody her age without a disability.

Ricky: Hannah being at grade level with her peers hasn't been easy. But she has been doing therapy since just a baby and she can hear, she can talk to us and have conversations just as a hearing person can, but she does struggle. And it is fatiguing for her. And so a lot of people they'll see her and they don't understand why she needs an interpreter or they don't understand why she needs certain accommodations. But because of those accommodations that we have been able to get for Hannah she has been able to excel in life. And so we struggle and it's a continual fight to try to keep those accommodations. And fortunately we have an excellent team around us that helps us and supports us in that.

(Hannah is in an eye clinic.)

Samantha: In 2014, we found out that she was losing some hearing in her right ear, which is typical. They can have continued vision or hearing loss. Her eyes are at risk for retinal detachment. She is training with a deafblind cane so that she has that accessibility as she needs it when she needs it.

(Hannah wears eye exam glasses with a smile.)

Ricky: And I think with all that said, our kids, all her siblings, they see her and they understand and it can be hard, well it is hard on them sometimes because it does give them extra responsibilities. It is a family effort and I think we're making it work right now.

(Hannah bakes with her siblings.)

Samantha: Our new family motto is hard moments don't make bad days. I do feel like Hannah is kind of the glue that keeps us all close and helps us remember what is important in life.

(Hannah rides a bicycle.)

Ricky: When Hannah got her adaptable bike, that was a tremendous day and she didn't see herself any different from her siblings that day because she was able to ride her bike next to them. So all these normal milestones that we just have grown to expect, when you go through these struggles they are even more tremendous.

(Samantha hugs Hannah.)

Samantha: We don't have time to worry about the little things in life that sometimes we can get caught up in. We also have to be okay with what is happening right now and in this moment. Especially at the beginning of Hannah's life there were a lot of things that we just had no control over.

(Hannah jumps in a pool.)

Samantha: So as far as the future is concerned, I do know that she does not intend on living with us. She has made that very clear. We can come visit her. She, at this point in her life, is fully intending to have a family and wants nothing more than to be a mother. And I hope that that will be true for Hannah. She is doing very well. She seems to be able to make choices for herself and move forward and she's starting to cook, she's starting to take lots of responsibilities. So we have a very hopeful outlook for her future and what that will be. And we're okay with whatever it may be.

(​​A photo shows Hannah eating a chocolate ice-cream cone.)

(A black and white newsreel shows Helen Keller visiting the White House.)

Narrator: At the White House, President Kennedy receives Helen Keller. Deaf and blind since childhood, Miss Keller's hands tapped by her companion, Evelyn Seide, in the finger code provide her chief perception and communication with the world around her.

(Kennedy holds Keller's hand.)

A lot has changed since Helen Keller visited the White House in 1961, including the ways we communicate.

(Images of phones, screens, and tablets appear.)

What about the deafblind community? What has technology done for them?

(A woman with dark blond hair is interviewed.)

Audiologist Linda True says each case is different.

Linda True: When we say deafness and blindness, you know, a lot of people say, oh, they see nothing, they hear nothing. And that's not always the case. Not every single person with deafblindness is the same. There's not a set of rules that you can follow. There's a spectrum just like it is for anybody with any kind of difference from another person.

(In a home office, Laurie McBride, DeafBlind Specialist at the Helen Keller National Center, operates a laptop with the use of screen reading software.)

Laurie McBride: So it can spell out everything that you type.

Narrator: Mason City resident Laurie McBride was born deaf / hard of hearing.

Screen Reader Speaks: "Right arrow key."

(Outside, she strolls with a walking stick.)

Narrator: But in 2012, at the age of 41, Laurie was diagnosed with Usher Syndrome Type II, a genetic condition marked by hearing loss with progressive loss of vision.

(Back at home.)

McBride: Helen Keller was completely deaf, completely blind. But I'm also deafblind, but I have a lot of usable vision and hearing. There's a multitude of combinations in between.

Narrator: No longer able to drive, Laurie was forced to reinvent her career. She went back to school and excelled, relying heavily on modern technology.

McBride: Cool part with the technology today is in fact, the hearing aids themselves. The app that I have in here (on a smartphone) connects directly to my hearing aid so I can stream all the calls. Now, textbooks, they have them as a PDF file, and you can bring them up on your computer, your iPad or a tablet and have VoiceOver (screen reading software) read it.

So that technology piece really helped in my schoolwork. It still helps on the job, if you have a lot of documents to read. Having that VoiceOver feature is excellent.

(VoiceOver screen reader navigates a website.)

Screen Reader Speaks: "Tool bar, address and search bar..."

McBride: It's changing how I see my disabilities and the sense that now, instead of relying on my vision, I get to rely on my hearing that I have.

(In a school, a teacher shows flowers to a student.)

Teacher: Flowers. Flowers.

Linda True: Sometimes as professionals, we forget we're making assumptions about a population and about their experience, and we don't have that experience. So we're experts perhaps on how to remediate some things, how to make some things accessible, how to facilitate some communication. But we're not experts on being deafblind. So that can be a problem when you don't include people that are in the deafblind population as part of the people thinking up the solutions.

(In a kitchen, a man stands by a fridge.)

Chad Brown: A button on a refrigerator, one is ice and one is water, I think the - let me think, the left one is water, the right one is ice.

Narrator: Chad Brown is the Assistive Technology Consultant for the Iowa Educational Services for the Blind and Visually Impaired.

Brown: I do a lot of grilling, so I have talking meat thermometers.

Meat Thermometer Speaks: "Seventy two point nine degrees."

Brown: People who are blind will use regular technology like anybody else would. My iPhone has built in VoiceOver from the factory. You just have to know how to engage it.

VoiceOver Software Speaks: "Photos, camera, weather, clock..."

Narrator: Formerly a teacher, Chad now helps visually impaired students to access their curriculum.

Brown: Being blind myself, I think the Braille display technology has come a long way.

This is an electronic e-reader. So you can load books right on this. I use this other one that's laying here. This one is basically an Android tablet with the Braille software loaded over the top. You're able to download all the different apps that anybody would with an Android tablet. You can put Facebook right on here.

We once had to rely on hard copy Braille to be produced for our students. Now it can be instantly downloaded, such as a book off the Internet. I always use Harry Potter as an example. If that came out at midnight on October 31, then students who are blind would have to wait a year to get that book in Braille. Now, with the advent of technology and sites like Bookshare, students are able to have that 99% of the time the next day or the same time as their sighted peers.

(Chad’s tablet is fitted with braille pins.)

Linda True: What technology does allow us to do is to have better ability to communicate with each other, because that's the goal. But we're always going to have to be mindful and have some empathy towards another person and really put ourselves in their shoes. You know, is this a person that I can just start talking in the middle of the sentence and they can understand or do I have to say, "Hi, my name is so-and-so and I'm going to talk about this?" So they have some context of what's going to be discussed. And I think that's the most important thing is allowing people to just be who they are.

(Chad sits in his kitchen.)

Brown: I always try and tell my students that I work with throughout the state about the things that I am able to do in my life and try and encourage them to want to succeed, want to go to college, want to have a job, have a family, be a productive member of society, try and lead by example for the kids around the state of Iowa.

(Laurie joins a zoom call.)

Voice on Zoom Speaks: "Corey is now ready and we can start our meeting."

Laurie McBride: Communication in our world is needed. Learning those skills, running their own computer, you know, answering their own emails, sending text messages and receiving text messages, communicating as they want, when they want without having to rely on somebody else. It is a big deal. Very important. It's freedom.