December 13, 2021
Feast Day of St. Lucy – Patron Saint of Sight
Hope® By Ryan Groeneweg
I have Usher’s Syndrome. It's the first time I have ever introduced myself in writing or in person in this way. I currently work for the University of South Dakota Center for Disabilities and oversee various training and workshops that will help educators and working professionals better understand how to support people with disabilities. Advocating for people with disabilities is not new to me, but advocating for myself is. Recently I had the opportunity to share some of my experiences and struggles from when I was younger and was surprised by the response. Students, co-workers, and other professionals wanted to know more. I had kept most of my stories with family only, where it was safe. In my new role, something has changed. I am older now and wonder if my story might help others understand the challenge of living with a disability and the determination to overcome much of it.
The real reason I am writing this short story is I was asked a question by another professional that I am ashamed to have not known the answer to. "What was it like for your mom when she learned that you had a disability?" I have never asked my parents or siblings about this.
It's a different story for my family. I have been married for 30 years, so you can be sure that I have discussed this plenty with my wife - there are no secrets between us. Tonia has been my anchor through all of my insecurities related to my disability. When Tonia and I were seniors in high school, and she learned that I wore hearing aids, her instant acceptance and response, "Oh, what's the big deal?" was a big deal for me. My children grew up knowing that I didn't hear well, and my younger children developed a natural intuition of steering me around obstacles I didn't see. Aside from my wife, I have not been very open about my disability. I hope this story will help me grow and help others as well.
I have a couple of degrees from the University of South Dakota and professional training as a school psychologist. I am also certified as a behavior analyst. It never occurred to me to think of myself as a person with a disability throughout my life. I have lived the past 50 years as a typical person. Occasionally, someone asks about my hearing and may comment that they "can tell by how I talk.” I nod my head and move on; what am I supposed to say to that? Oh really? Do I talk funny? I wonder why? Can you imitate how I talk so I can understand what you mean by this? I still am not sure what they are referring to. With regards to Usher’s, I have never revealed that to anyone outside my family. Here is a quick fact about who first identified Usher’s Syndrome. It was first described in 1858 by Albrecht Von Graefe, but named for Charles Usher, a Scottish eye doctor who identified the disorder's hereditary nature and recessive inheritance pattern. Usher’s Syndrome impacts a person's hearing and vision, with the latter getting progressively worse over time.
I am aware the preferred reference is Usher syndrome versus Usher’s Syndrome, as well as many other “appropriate” ways to refer to disabilities, which seem to rapidly change. I come from a generation unconcerned with identity politics, person-first language, or sharing personal details about a disability. I don’t intend to offend and would certainly respect others if they asked me to refer to them as having Usher Syndrome, but I grew up with Usher’s, which is how I am comfortable referring to myself. As I mentioned, I shared as little as possible about my disability. Usually, the hearing was the first thing I would disclose. I have moderate hearing loss and wear hearing aids. Growing up, I developed a habit of wearing hearing aids when in class or when absolutely necessary, and usually only wore one at a time. Otherwise, I removed them for all other situations, a habit that followed me well into my 40s. Honestly, technology sucked back in the 70s through 2000, and the hearing aids I wore were helpful in some situations, but distracting in others. I never discussed my vision problems, but I had to let others know as I entered my 40s and beyond. It's hard to fool people if you're legally blind, but I am pretty good at it. My vision impairment is called retinitis pigmentosa, or RP for short. It began with night blindness during my youth and progressive loss of peripheral vision as I aged. It's a challenge to lose your vision when you also have difficulty hearing.
My parents taught me to approach life as a typical and non-disabled kid. They accomplished this by treating me the same as my older and younger siblings. The only memory I have where my parents acknowledged my disability was when they shouted at me, "Ryan! Do you have your ears on???" I'm sure that was the only way to get me to wear hearing aids, but I hated that growing up.
People with visible disabilities were treated differently in the 70s and 80s when I was growing up. If you saw a person with a physical impairment, in a wheelchair, or perhaps with Down syndrome, people would modify their behavior around them. Talking slowly, using more gestures, speaking more loudly come into play as if this magically makes understanding easier. Treating people with disabilities differently occurred regularly in the community I grew up in. Rock Valley is the home to one of the largest adult disability programs in the state, Hope Haven, which supports individuals with intellectual and related disabilities throughout their adult life. Hope Haven is well known in the Tri-State area of Iowa, South Dakota, and Minnesota and is reputable for its services. I recall growing up and calling my friends a "Hoper" when they annoyed me and vice versa. I thought this was a common insult but only later realized it was more of local slang and meant you were calling someone a derogatory name and thought them to be like a person with a disability served at Hope Haven. Think about that - witnessing and living in a community that treated people with disabilities differently, and it's no wonder a person might not want to be associated with having a disability. My disability wasn't obvious or visible, and I sure wasn't going to share or talk about it. This isn't just a local issue either, and it was taboo to have a disability in most communities in the 70s and 80s. These were different times in American history; disability services were only beginning to emerge. The idea that people with disabilities could be integrated and accepted as part of the community was not a commonly held viewpoint.
To best share this story, as experienced from the different viewpoints of my mom, my siblings, and perhaps my immediate family, if I can convince them, I will split the following narrative into each person's perspectives following a chronologic timeline. Of course, our stories overlap in some areas, but I found it fascinating how different the personal perspectives were.
Judy
I am the mother of four children, two of whom required public school support. Paul and Ryan were eight years apart, which led to two unique and different experiences as a parent. My second oldest child, Paul, had limited services when he started school in 1969. I was 19 when Paul, my second child, was born. I knew very little about hearing loss, but we noticed that he seemed to misunderstand what they asked when adults would talk to him. Paul would say something about a horse if they asked about the house. Wayne and I would take Paul and put him in another room and then call his name, and he would answer every time, so he seemed to hear just fine. When I would talk to Paul, he always seemed to understand me too, so we didn't know what was going on. I took Paul to see a pediatrician because of how he answered questions incorrectly. The doctor checked a few things on him and told me he was probably a cognitively delayed child. I laughed when the doctor said this because I knew Paul was bright as he had shown that many times. My husband Wayne was furious when I told him what the doctor said. Still, we were looking for answers and eventually took Paul to the school for the deaf to test his hearing. The audiologist taught us about the different types of hearing loss that can occur, and that Paul had a sensorineural loss which meant he couldn't hear specific frequencies at all. Paul began wearing one hearing aid when he was 4-years old. We had to look through the Yellow Pages in the phone book to find a hearing aid dealer in Sioux Falls to buy his first one.
Paul would have started school in 1969 because he had a September birthday and was almost 6-years old when he began. The only services that Paul received were when he attended elementary school. He received speech services from a speech therapist for three months yearly during elementary school. The therapist would work with him two or three times a week. Beyond that, the school was not familiar with his needs and did not offer other supports, such as placing him in optimal seating. I remember attending IEP meetings for Paul, possibly in 1977, but that's just a guess. These meetings usually had some teachers and others present, but they never recommended changes or support. By this time, Paul was no longer receiving services. An Areas Education Association (AEA) supposedly provided access to a speech and language pathologist (SLP), occupational therapist (OT), physical therapy (PT), and school psychology services, but this never came into play for Paul. If they had asked Paul to sit in the front row, he probably didn't comply.
Paul
When I was young, I had to wear a hearing aid in one ear, but I did not like being different from other kids my age. Most of the time, I believed that I didn't need to wear the hearing aid, so I'd take it out and put it in my pocket. I recall working with a speech therapist beginning around 4th or 5th grade. The speech therapist helped me mostly understand that when people talked to me, I didn't hear the 'sh's, 'ch,' or 's' sounds on parts of spoken words. For example, if someone spoke the word "shut," all I heard them say was "hut." Junior High was more challenging for me, and my grades weren't the best. The only recommendation was to sit in the front of the class, which I didn't like.
Ryan
I was initially diagnosed with a moderate hearing loss at a very young age, probably as young as 2 or 3. I had an older brother who also had a moderate hearing loss diagnosed when he was older as no one was checking for it until they noticed he wasn't hearing as well later on. My parents were more watchful of hearing loss when I was born and used the experiences, they learned from my older brother to get support for me sooner. The diagnosis of Usher’s Syndrome came when I was 6 to 8 years old. My older brother was either 14 or 16, getting ready to get a learner's permit/driver's license, and needed to pass the eye exam. The eye doctor noticed some issues with his retina and referred our family to a specialist in Iowa City for further testing. The Groeneweg family learned that they had two sons who were "Hopers." Just kidding, two sons who had Usher’s Syndrome.
Judy
When Paul was 16 and Ryan was 8, we found out they had Ushers Syndrome. Paul wore glasses and went in for a checkup with Dr. VanVorst, who spotted problems with his retina and referred us to Iowa City for further testing. The whole family underwent the assessment, and it was confirmed and explained that they both had Usher Syndrome. This totally crushed me with guilt. The school made no changes or never discussed Paul's vision issues. At my first IEP meeting in junior high (middle school), I was surprised to learn some of Paul's teachers were unaware that he had hearing loss.
When our third son, Ryan, was born, I was more familiar with what hearing loss resembled. I remember Ryan's younger sister Leah would be singing songs, but Ryan didn't know about the lyrics to a song. He was good at drawing at an early age but seemed to have similar difficulties with hearing as his older brother Paul had and was eventually diagnosed with the same hearing loss as what Paul had. I was shocked because I had thought that Paul's hearing loss was related to my being sick with the measles during my pregnancy with Paul. Having a second child with a hearing loss meant something else was going on. Ryan was initially held back from starting Kindergarten because of his June birthday and hearing loss. I probably just enjoyed having him home and maybe used his age and hearing loss as an excuse to keep him home with his younger sister, Leah, and me. I did take him to the school for the deaf in November after he could have started Kindergarten. When I took him to The South Dakota School for the Deaf for a hearing evaluation, the audiologist insisted I start him in school. We learned of this in November 1976/77, and when I approached the elementary principal to inform him that Ryan would be beginning at Spring semester time, he said that that could not happen. However, I convinced the principal that this was in Ryan's best interest, and he agreed with the stipulation that Ryan would be required to repeat Kindergarten the following year.
Before Kindergarten, we had occasional home services for Ryan. I was kicked out of our kitchen when anyone came to the house to work with Ryan. They played games for vocabulary and speech mostly. These services mainly took place before Ryan began school. There was a blind man from the Services for the Blind that I liked who came to visit. They were supposed to inform us of programs for higher education but never did. I was not impressed and did not get much help. When Ryan started school, four other children were deaf and/or hard-of-hearing that received similar services. Each of them wore FM systems that connected directly to the teacher's microphone, and an interpreter was provided in class. Was Ryan happy about this? NO. The IEP meetings didn't include him and had become perfunctory; they didn't ask for input. Ryan had speech services regularly in school and speech services in the summer. Ryan remained on an IEP throughout school, even though he was largely independent of assistance. The IEP allowed him access to Willie Dekkers, an interpreter that the other students received during high school. Ryan always had a school advocate available to him
Ryan
My time in Elementary School and Junior High mostly stood out for the fighting and conflicts. Many of my playground fights were in response to being teased for having speech services and being highly sensitive to any kind of teasing. It's possible that I also misunderstood some students and thought they were teasing me. I didn't wear my hearing aids outside and was pretty much on my own to figure it out. Early on, I was required to sit with Jon and Rhonda, who were also deaf and/or hard-of-hearing. There were two other students, one a grade above me and one who was a grade below me. Jon, Rhonda, and I were required to sit in the front row and always to the side of a classroom near an interpreter assigned to the three of us and provided support during all lessons. We were also required to wear "earmarks" or essentially these 3x5 inch batteries worn around the waist on a belt. We wore the receivers, wired ear molds connected to the battery unit on our hips, while the teacher wore a similar belt unit with a microphone. Three settings on our earmarks let us select what we wanted to hear. We could choose the teacher mic-setting, which meant everything the teacher said, including noise in the immediate vicinity, was transmitted directly to us. We could choose an open setting that amplified all noise in the classroom, and we could select the off-setting so you couldn't hear a thing. Whenever possible, I took the earmark off and rarely wore my hearing aids when in gym class or recess and never outside of school.
Judy
Paul had always been talented and active in several sports in high school. Paul once told me his junior year that he didn't like how the coach was using him in baseball, so he quit and didn't return. He did say he had a more challenging time seeing the ball at night, and the team played many night games, which was difficult for Paul. The coach was not understanding. I always found it surprising that he played slow-pitch softball for a long time after graduating high school. In High School, they provided no options for support that I recall. We kept our expectations high for Paul, and he grew into a remarkable man.
Dan
I am the oldest child in the family and never thought much about my younger brother's disability. Of course, I was aware of it, but it didn't seem to affect them. I can remember getting mad at Paul when we had to do chores, and he didn't see some of the pigs in the darker barn. When we were teenagers, I remember we were with our cousin and throwing walnuts at someone's car then running through people's backyards not to get caught. Paul ran right into a clothesline and wiped it out. Everyone could see it just fine, it wasn't that dark, but for Paul, it was hard.
Paul
When I was a freshman in high school, I had to take some academic tests and discovered that I had the vocabulary of a 3rd-grade student. During my sophomore year, someone would come to work with me twice a week to learn more words and the proper pronunciation of the longer words. Teachers suggested that I sit in the front row for classes again, but I was more interested in sitting by my friends. Looking back on school, I know I missed out on a lot and should have listened to the few recommendations given to me.
Our family traveled to Iowa City to meet with a vision specialist who diagnosed me with Usher Syndrome. Around the time I was old enough to start driving, maybe 14 or 16, I learned from the eye doctor that there were problems with my retina during a routine eye exam. They explained that my vision problems would include losing peripheral vision and night blindness. Learning about this explained why I was running into fences, clotheslines, and other objects during the night when running around with friends. I told my friends about my vision, and they were ok if I needed to hang onto their shirttails to avoid hitting things or running into other people in the dark.
As a 16-year-old, getting my driver's license was a big deal to me, and I wouldn't let the diagnosis of Usher’s Syndrome stop me. I didn't know what to expect, and I wasn't sure how quickly Usher’s Syndrome would affect my vision. I was able to pass the eye exam and get my driver's license without any issues. Even though I had a permit, I would usually have my friends drive when hanging out with them, but I would drive if I had to. I remember worrying that every time I went to the DMV to get my license renewed, they would tell me "no." I was able to pass the driver's exam eye test without much difficulty throughout most of my life. Once, when I was asked to read the lowest line on the eye chart, I started with reading "7, 6, 3, 8,.." and they interrupted me to say that there are only letters, not numbers. I still passed the eye exam.
Judy
I wish I had requested counseling to help Ryan with anger issues. Ryan WASN'T going to learn sign language. Fights, fights, fights including hitting a girl, Barbie Anderson (2nd or 3rd grade). I got a call about that one from the principal. Ryan was angry that he had to be grouped with the deaf students, although he liked Jon and Rhonda. I remember that Ryan had a hard time when Tim died (who had many health complications and was deaf). When Ryan was in middle School, Freddy (classmate) said I was old (had grey hair for a while), and Ryan killed him. I guess I was blind to Ryan's struggle and felt wrong about that. I am thankful for the push his interpreters gave him, even though he resisted their support all the time. Ryan ended up graduating with honors from high school. I think all the outside reading he did was helpful. Paul didn't do that, so I bought him magazines like Sports Illustrated. Ryan was a unique fun child who had friends and accomplished a lot.
Ryan
Ok, first, Barbie was a couple of grades above me, at least a foot taller and about 50 pounds heavier than I was and was swinging me around by the back of my coat in a big circle. I think I tried to get ahead of her in line to play tetherball during recess, and she was mad about that. Barbie had a pretty good hold on my coat and threw me around in a circle. I was getting embarrassed by this, and while pinwheeling around, I struck out. I didn't try to hit her in the face so much as try to get her to let go of my coat. Unfortunately, she also had braces and ended up with a pretty good cut to her lip. I felt terrible as I didn't want to hurt her and remember the elementary principal telling me I was the worst child he had ever had in his school. I can recall many fights with other students when I look back on an elementary school. I wish I could say that all my elementary fights were just a series of unfortunate circumstances, but mostly I was a kid that would swing first and figure it out later. I lost recess privileges a lot, so I had plenty of alone time to think about it. Most of my fights were with older kids who would try to pick on me and probably knew they could push my buttons quickly. I admit I had a fast temper, but I have difficulty recalling why. My best guess is my older brothers were big and rough-housed with me a lot, so I wasn't intimidated by older kids. I was also hypersensitive and emotionally immature, and if I misunderstood or perceived something the wrong way, I usually reacted poorly. This led to a lot of conflicts for me.
I matured and displayed better (not great, but better) self-control in high school. The only conflict that I continued to have in school was refusing to learn sign language and accept the help of other available interpreter services. I wouldn't look at the interpreter in class and refused to wear the earmarks that had followed me from grade school. Eventually, a team must have decided I was no longer required to wear the earmarks, but strangely enough, they didn't require Jon and Rhonda, who had much worse hearing than I did, to wear them anymore either. They let us wear our hearing aids which were smaller and didn't require us to carry the teacher's microphone from class to class. I would often take my hearing aids out and try to fit in. That was all I wanted. I was also allowed to sit with my friends and no longer sit next to Jon and Rhonda. I liked both Jon and Rhonda, but I also had other friends that I wanted to sit with. I did well in school, mainly earning A's and B's. I am sure this had a lot to do with the extra help the interpreters provided me (I was given copies of notes taken by the interpreter to study from, etc.), something my older brother never received. I think I was ok with the notes because no one knew I was getting them for help, so that was fine by me. I was terrible at taking my notes and missed a lot of information, so I preferred what the interpreter provided because they were more complete.
My vision was starting to be a little problematic during high school, especially at night. If I wanted to run around with my friends at night, I usually needed one of them to let me hold on to their shoulders. I also started having difficulty with some sports, such as night games. Playing football under the bright lights was fun, but there were many times I would not see someone and would be hit without being able to anticipate it. In wrestling, we would be required to run laps in the hallways after school, and often the lights would be dim. I developed a habit of falling behind a bigger person who ran more slowly as a way of trailing them in the dark. Nighttime driving was sometimes tricky, but it never occurred to me at that age that I wasn't seeing well enough. I had a few mishaps early on in which I ran over a curb I didn't see but mostly considered that a typical accident that could happen to anyone.
My sister, Leah, shared that she often would step in and serve as a peacekeeper of sorts. She recalls many times outside of school where we were hanging out with friends and I misunderstood something someone said, or maybe didn't really see well enough in the dark to understand what was going on. The old instinct, insecurities, and quick temper leading me to lash out first and ask questions later was still pretty strong.
Paul
As I got older, I would try to avoid driving at night, but this was not always possible. As I got older, I noticed I started to lose my peripheral vision. I was in a few minor car accidents. Once, I pulled out of the drive-through at the bank and bumped into a car pulling in. I didn't see him because it was nighttime. Fortunately, no one was hurt, and there was no visible damage, so nothing happened. Another time I pulled into a convenience store and ran into another car head-on during the daytime. Again, no one was hurt, but the other car had some minor damage that my insurance fixed. I ran into a guy on a bike as he cut across the street at a busy corner nowhere near a crosswalk at dusk. Not ideal, but still, I feel this one is his fault. I bought him a new bike.
An examiner tested my hearing when I was close to 30 and told me I should have been wearing a hearing aid in both ears. I was astonished at how much improvement it was for me in all I could hear. After receiving the new hearing aids, I recall driving home and thinking that all the new sounds I heard meant my vehicle would fall apart. I continued to drive cars until around the age of 50 and probably should have stopped ten years sooner, if not earlier. During the time I did drive a car, there were close calls. Even though I went slowly and was very careful, I was lucky that something horrible didn't happen. When I look back, I guess there weren't any resources during my school years back in the '70s, so I made do with what I had and did what I could so as not to appear different. It's tough to give up your independence.
Ryan
After high school, I went to college and struggled for a few years. I had grown accustomed to the notes given to me from high school and didn't have the confidence or desire to ask for help or draw attention to myself. I tried a few things on my own, such as buying a tape recorder and setting that by the professor's podium to record lectures. Some ideas sound promising but don't work well, as I had difficulty understanding the audio playback later. My grades were all over the place, some teachers were more challenging for me to understand, and I did worse in those classes. Some classes were challenging, and I barely would pass them. By the time I was a junior in college, I had figured out preparing and studying for a test and getting the notes I needed. I also noticed that the further into college I was getting, class sizes were getting smaller, and it was a little easier to sit close and hear the professor. I recall my last year of graduate school that another student in class told the professor that I had a moderate hearing loss and wore hearing aids; she became angry at me for not telling her and yelled at me in front of my classmates. I eventually graduated and went to graduate school to become a school psychologist.
My vision continued to worsen as I noticed my peripheral vision was diminishing. One evening in the early 90s, when I was with my wife's family at their home, I volunteered to run the store to pick up some snacks and soda. I drove down the main street on the way back to their home, and a man ran between parked cars in the middle of the block to cross the road to a bar, and I never saw him. All I heard was him hitting my hood and landing on the ground behind me. He suffered a broken leg, but I was not given a citation. The police felt that the man acted recklessly, trying to cross the street the way he did instead of crossing a crosswalk. But I also knew that it was possible I would have seen someone trying to do that and could have stopped quickly if my peripheral vision were better. Another time during a camping trip in the 90s, I had to get up in the middle of the night to go to the bathroom. Rather than walk all the way to the campground restrooms, I walked about 15 feet away from the tent towards a tree in the dark that I knew as there from earlier when it was light out. It didn't occur to me to take a flashlight, my glasses, shoes, or to put a shirt on. It was supposed to be a quick trip to the tree and back to the tent, but when I turned around to go back, I couldn't see any sign of the campsite. It was pitch black. I tried to retrace the 15 feet back but never found the campsite. I had become hopelessly lost and disoriented in the dark and I still refused to yell for help because I was embarrassed. Instead, I walked completely blind for 2 hours in my boxers until I found the road that encircled the campsites then walked slowly along the edge of the road for campsite post. These posts provided me with a sort of tactile shape of the campsite number and helped me to orient to which way to go to get to our campsite number. That was a long night in which I was afraid someone would find me walking barefoot in my boxers and without my hearing aids at 3 in the morning and wonder what this guy is doing? Not good. But I made it back to our campsite and crawled back into the tent without anyone ever knowing I was gone. I have many such stories as this, each one a lesson for me that I needed to plan better and begin anticipating these types of situations.
In 1999, I graduated from the University of South Dakota with an undergraduate in Psychology and an Education Specialist degree in school psychology and was preparing to start my professional career. To this point in my life, the only people who knew I had Usher’s Syndrome were my immediate family and my wife of 8 years. Many friends from all those years knew I wore hearing aids and didn't see well in the dark, but that was it. I never talked to anyone outside of my family about Usher’s Syndrome.
From 2000 to the present day, I have had to continuously adapt to changing circumstances related to my hearing and vision. Today, the technology for hearing is vastly superior to what I used for the first 45 years of my life. My vision had progressed to where I eventually stopped driving when I was about 44 years old. I no longer felt I could drive safely; my central vision was unreliable. My wife and youngest daughter encouraged me to stop, and I agreed. I thought it was better to decide to stop driving rather than have a severe accident that could hurt others. It might seem like an obvious thing if you were reading this but trust me when I say it was tough to give up the independence that driving provides. The vision I had at 44 still felt complete to me, like I was seeing what I needed to see, but I think my mind would fill in the "visual gaps" in what I wasn't seeing. It was hard for me to tell.
