Living with Usher Syndrome: Jayce Romero’s Story in the DeafBlind Community (Part One)

In this powerful episode of This Ability Podcast, host Mary Baudoin sits down with Jayce Romero, a young DeafBlind advocate from Lafayette, Louisiana, who lives with Usher Syndrome Type 1B. Jayce shares his deeply personal story—from his early diagnosis, educational journey, and family discoveries to his commitment to raising awareness about DeafBlindness. With the help of his interpreter Shirley Delahousie, Jayce offers insight into what life is like navigating the world with both hearing and vision loss, and why visibility and representation matter.

Listeners will hear about Jayce’s training experiences at Affiliated Blind of Louisiana and the Helen Keller National Center, his passion for helping others with Usher Syndrome, and his plans to attend Gallaudet University. He also opens up about his battles with depression, his dreams of entering politics or psychology, and how the DeafBlind community has shaped his sense of identity and independence.

This episode is a reminder of the resilience and strength within the disability community. Whether you're a parent of a child newly diagnosed with Usher Syndrome, an educator, or simply someone wanting to learn more, Jayce’s story is both educational and inspiring. A full transcription is available on the Buzzsprout website, and a visual podcast version will premiere on YouTube on May 31st.

Part Two of Jayce's Episode will launch as the season two finale. Stay tuned to our social media pages for release date. 

Transcript

Mary Baudoin (00:07):

Thank you all for joining us for this episode of This Ability Podcast. I'm your host, Mary Baudoin, and joining us today is Jayce Romero. Thank you for joining us, Jace, as well as your interpreter, Ms. Shirley Delahousie, who will be interpreting for you. Thank you both for being here today.

Jace Romero (00:27):

Thank you for having me here and the opportunity for this podcast. I'm Jayce Romero. I'm really very excited to share with you related to the Usher syndrome that I have and many other experiences.

Mary Baudoin (00:42):

Jayce, let's get started with where you're from and a little bit about your heritage.

Jayce Romero (00:47):

Well, really, I was born in Lafayette, Louisiana. I'm really supportive of the Cajun heritage, the culture, and I'm very proud of it. When I was born, I was born deaf and I didn't really have the diagnosis of Usher syndrome, but later, when I was six or seven, I went to the school and they suspected that I might possibly have Usher's because my balance was really bad and I would fall down a lot. And the school sent me to my mother, sent a message that "Probably let's evaluate Jayce." And then I was diagnosed with Usher syndrome. Growing up, I really saw very normally during the daytime, except at night, my vision wasn't really great. And then when I went to mainstream school, I was 12. I moved to Austin, Texas in 2012, and at that time I went to the Texas School for the Deaf and that's where the best opportunity was for my education.

(01:46):

And I continued on until I graduated in 2019 and then I worked for federal and state governments and then COVID, I moved back here and then my vision immediately started regressing. It really became very serious, but I found what was the research for Usher syndrome in New Orleans was Dr. Jennifer Lentz, and we've continued working together. And in 2022, I went to ABL, Affiliated Blind Louisiana, for Deaf-Blind training at that center and I did progress there and then I transferred to Helen Keller National Center in New York and I went there and things progressed and I've gotten more and more training. Soon I will be returning to Helen Keller for more in-depth training and to meet more challenges, and that's my plan, my goal right now to become as independent as possible.

Mary Baudoin(02:46):

Why is it important for him to be involved and to be an advocate for people who are deaf and blind?

Jayce Romero (02:54):

It's very important to help this community so that people can recognize people with Usher syndrome because Louisiana has a very high number for Usher syndrome population. In the Deaf-Blind community, hearing blind, there are various levels of Usher syndrome, but it seems like many people in families or friends or just in general services in the community, they don't seem to recognize the people with Usher syndrome and they look at us that they don't understand us. And for example, sometimes I have noticed in general public, they don't understand Usher syndrome at all, for most of the time.

(03:40):

So I want to show them, I show them my cane and they see that I'm blind. That's very common. But when I also, they know that I'm deaf, it's really much more of a challenge than hearing blind because the hearing, they can talk still, they can hear, but it's hard for people. Many people do try to learn new things in the community, but we want to make the community feel like it's a unit. And my goal and in educating the community is so that people would know and recognize Usher syndrome so that that will spread the word. It's very important for that exposure.

Mary Baudoin (04:21):

I know that he was diagnosed with Usher syndrome and for our audience members who are listening who are not familiar with it, I'd like to just briefly provide an overview. It's a rare genetic disease that affects both hearing and vision. It causes deafness and hearing loss and eye disease called retinitis pigmentosa. Sometimes it also causes problem with balance, which Jay said he did experience. People with Usher syndrome are born with it, but they usually get diagnosed as children or teenagers, and there are three types of Usher syndrome and each causes a different mix of health problems. Usher syndrome is caused by changes in genes. It's an inherited genetic disease, which means that these genes can get passed down from parent to children. When you were diagnosed, Jace, with Usher syndrome, what was your parents' reaction?

Jayce Romero (05:25):

That's a good question. I had type one Ushers, B. 1B itself is many of the Deaf-Blind in Louisiana that's common in this area. With that, my Ushers, when I was about seven when I was diagnosed, it was from actually both my mother and my father. So it seemed they were both carriers. So that means I really see no one else in my family with this. So it's obviously was I got it from my parents. Also, I had one Deaf-Blind cousin. Really, we had never met at that time. We grew up, I was much older and I finally got involved with the Deaf-Blind community in Lafayette. And at that time I met this person and I felt in my gut, I feel like he must be related to my family. And I asked and we talked and we found out, yes, yes, we are family, we're actually cousins, and we were both shocked and I was wondering about in my family, did they keep that a secret?

(06:34):

A lot of these people, they're very secretive, they're not really friendly. So I did my best to find out. Backtracking just a bit, I did some looking into my ancestry, and it seemed like on my father's side of the family, it actually was from Italy and then moved and then to New Orleans, so it was 300 years ago in that family history, but it didn't really show any abnormalities, but I think the one from Italy may have had Ushers. But I did some investigation on my mother's side. There were some family from Canada, and that's why the Ushers because it went through the generation, but there were other historical reasons maybe they moved here, a lot from Canada, and they moved here and they really married cousins and that caused the Ushers. But I am not sure exactly where it all comes from, but they were both carriers, so it was 100% that I would have it.

Mary Baudoin (07:40):

Whenever he was young, did he go to a regular school or did he go to a school for Deaf children?

Jayce Romero (07:48):

Growing up, I went into a main public school, elementary, SJ Montgomery here in Lafayette. And as I grew up, I was in the Deaf program. They had interpreting services, but really that program wasn't really great and it seemed like my education and language, it was deprived. I really didn't do that well. And my mother decided to take me out of school, got in contact with a person in Baton Rouge who was a counselor, and we talked to that person and they suggested maybe it would be better to go to Texas School for the Deaf. At that time, I was leaving fourth grade, I skipped fifth, went straight to sixth. I got into that middle school there in Texas, in Austin, where it was a much better educational system, and I was learning language and signing, and I was learning much more rapidly. And then as that progressed, I succeeded and I had more knowledge. I had better communication skills, much better than when I was younger. But I'm really happy now that I do have my education and I'm able to communicate.

Mary Baudoin (09:02):

And I think his education is planning to continue. He wants to go to Gallaudet University, is that correct?

Jayce Romero (09:09):

Yes, I plan to go to Gallaudet, probably to major, I'm not quite sure in exact my major. I've got two thoughts, political science or psychology, I'm not real sure, but for now I'm waiting till later. And when I get into Gallaudet, I'm going to just kind of take my time, see how I progress. Those ideas may change. I trust myself to just watch out for that. But I'm sure that Gallaudet already has a disability office there, so I'll have access to braille, tactile interpreting, and I have been in touch with some of people there and I feel like that's going to be the best place for me. Other locations, it seems like they don't have the services the way Gallaudet does.

Mary Baudoin (09:58):

And he also mentioned to me that he plans to attend the Helen Keller conference or some type of a school or workshop. Can he tell me more about that?

Jayce Romero (10:08):

Yes. I'm going back to 2023. I did get into Helen Keller National Training Center for Deaf-Blind training at the center, and I progressed, but I had prior training at Affiliated Blind of Louisiana. Then I went to Helen Keller and got more training. I was there for about three months. And then when I finished that training, I came back home and I got a report for my training and I looked that over and I said, "Oh, I've noticed some of my areas I haven't really finished." And they recommended some other areas, like more on independent living skills. And I felt like I wasn't done. So I asked vocational rehab, "Is it possible for me to return to Helen Keller?" And vocational rehabilitation here agreed and worked everything out. And Helen Keller accepted my application to return because of what was requested that I needed more training.

(11:10):

So I'm really looking forward to going back to Helen Keller for more challenges, more independent skill training, for all the things that I need. Then I need everything to be complete so that way I will be prepared to go to Gallaudet. So number one, I need independent skills. I need to finish that so that I'll be ready to go to Gallaudet. I convinced vocational rehab, I want the number one on independent living skills. I need to complete that part so that Gallaudet would be a better match for me. And they agreed. I have a good relationship with vocational rehab. I know sometimes they tend to say no. Maybe in the future. I've stayed relentless with them.

Mary Baudoin(11:52):

What resources or tools have been most helpful to you, having Usher syndrome, or organizations that have been very helpful?

Jayce Romero (12:01):

I use ICANN, ICC (ICanConnect). They provide the equipment like iPads needed for my vision loss without me having to pay anything. For example, the iPhone, it's like $1,000. That's a really good expense, but if it is a phone that I can't see, I checked with ICC and they cover that and it makes it really zoom so that I'm able to read on my phone, makes it accessible for me. Same thing with the laptop, I need to use that. They do provide CCTV like reading the newspaper or reading a magazine or for enlarged print, and I can see that better. I use that occasionally.

(12:43):

Helen Keller does have the resources and Gallaudet will have them, and vocational rehab provides a lot of those resources. I used to be able to read books, but now my vision is really declining, so I'm using the iPad and I screen shoot and then it is not a book. I use iBooks and read it on the internet, so it keeps me busy and I can adjust the text size and colors so that it's comfortable for me to be able to see, to keep me busy. And also I use a magnifying glass and sometimes it depends on exactly what I'm looking at.

Mary Baudoin (13:23):

If group of parents have a child that's recently diagnosed with Usher syndrome, what would you like to tell the parents of that child? And what would you like to tell that child just from your own experience?

Jacye Romero (13:36):

Number one, if I see that parents are like, they're freaking out, they don't know what to do with that child Usher syndrome, I would simply recommend to the parent that they need to become affiliated with vocational rehab services because they have number one resources on what the child will need. They need to provide support. For example, when they go to school, they'll give support like interpreters and they will cover that fee. If the parents can't afford things for the child, what they need, like a big computer that they could see, they can also provide, through ICC, that equipment or through vocational rehab, depending on what that equipment and what they qualify for. But understand, the child needs to go to the eye doctor on a regular basis. If you have Usher syndrome, I suggest that you do that because there are special things for research and possibly there'll be a cure someday.

(14:36):

So make sure that the parents don't oppress the children. I want to see them, the children be happy and know that they have opportunity. It's hard, yes, but they can go through this. My experience, my parents, well, they don't really understand Ushers, but they're still trying to deal with it. They know that I have Ushers, they know that I can't see at night. They did give some support, they would guide. But during the daytime, I get along fine, but it is varying things that I have been through, a lot of frustrations. A lot of things have been okay due to my vision loss. My parents have tried to learn, but I've noticed that my grandfather, he really is very curious and he observes what is Ushers and he will look and he wonders and he asks questions. And I know I feel like I can be kind of ashamed that they're just observing, but I do ask them, "Why are you watching me like that?"

(15:34):

And they said, "Because of your vision." And I feel a little, I know it's hard to understand how to really express your emotions and support and try to make a better family environment. But I do also remember my grandfather saw something in the house. For example, they just recently got a new piece of furniture and they would tell me, "Make sure. We've just added this in the room." So I wouldn't run into it or hit it. Or if they're changing a lamp, they let me know and I will tell them if it works for me or not. And they'll make adjustments. They'll tweak things so that I can make me more comfortable. There's many examples of that, what my grandfather has tried to fix for me, and sometimes I'll say, "I want something, I need something." But not most of the time, not really. And especially as I get older, I am more independent. I'm learning about touching because my vision is really declining, so I do have to be very tactile in the environment. In the house, everything pretty much stays in the same location, so it makes it easier.

Mary Baudoin (16:45):

Has he ever experienced being depressed or lonely and feeling maybe isolated? And if you have, what would you tell someone who might be going through that right now, if they have Usher syndrome?

Jayce Romero (16:59):

Yes, I'm happy to share it with you. Growing up, it wasn't really an issue, but I'd say about the age of 21, my vision dropped sharply, and after I left my job during COVID, when that spread, that was a huge challenge, because I was overwhelmed during COVID. I just was home all the time, all the time. There was nothing to do in the early part of 2020 until the summer finally, my vision was okay. I went back to work until I felt uh-uh, there was something in my department manager, I felt he was kind of picking on me and discriminating on my deaf-blindness, felt really overwhelmed. I felt lost, and it continued and it had a really hard time getting interpreters. Because of COVID, there weren't a lot of people available, so I just finally made the decision to resign. And after I did, I decided to move back home to Louisiana.

(18:00):

During COVID, yeah, I understood everybody was stuck, but a couple of months later, my vision actually did decline more and more, and I was really losing. I didn't understand, "Why is my vision not as good?" It was in a short period of time. I went to the store one day and I could hardly see anything. I couldn't figure out, it wasn't the same as I had done before. It was so different. And I was really very confused about that. I thought, "I guess I can't go to the stores anymore. I can't do those things." So I would stay home more and more, and I had more and more headaches, and my vision was awful, and I was very, very depressed. I really wanted to be able to see. I wanted to drive. I wanted to socialize. I had no idea what I was going to do in the future.

(18:47):

I was scared because when COVID's over, I wanted to go back to college and I wanted to be able to see, and I thought, oh, I had all these thoughts. I didn't know what the future would be. And at that time, it was tough. It was terrible. I really didn't like it, and I was deeply depressed. I was lonely. I just kind of stayed in my room all by myself all the time. My grandparents were trying to be helpful, and I told them, "My headaches are bad and my vision is bad, and I'm so emotional." Really at that time, I wanted to remember about the past, something that helped me and to understand. So at the time, one regional rep from Helen Keller who worked in Baton Rouge, that person got in touch with me. She knew that I had moved back to Louisiana. She contacted me because I had posted on Facebook if anyone knew, does Louisiana have vocational rehab services?

(19:45):

Because really I did not have the idea, any idea what I was going to do. So she hooked me up with Helen Keller and vocational rehab and some other people. They sent me something about an SSP (Support Service Provider) program, and I thought, "What is that, support service provider?" They work with the Deaf-Blind. Oh, I felt, "Oh my gosh, I had no idea. This is a new world for me, the Deaf-Blind world." So as I moved on, there were so many little steps that I had to take. I met some interpreters who explained things to me, and then I stepped into the Deaf-Blind organization and I met more and more Deaf-Blind. I felt very shy. I wasn't sure. I didn't know these people. And there were many interpreters there and SSPs (Support Service Provider), and I noticed that some of the Deaf-Blind just would come up and be kind of aggressive and come to meet me.

(20:38):

I learned and learned as it went, and as they looked at me, they noticed that I've actually changed. Now I'm very social. I'm in the Deaf community. I'm in the Deaf-Blind community. I'm in many things. I've improved so much and I'm feeling like I'm going back to the old person, depressed person. But still, I do have some disappointment of my vision loss, of course. And I know it's hard to accept sometimes, it takes time to process, but I'm very happy to have the socialization in the community and I have the SSP’s (Support Service Provider) so that if I can go to the store. I can go and I'm much more satisfied today.

Mary Baudoin (21:17):

Does he have a good support network here? Would he say that he's got a good group of friends or people he can reach out to if he ever does feel isolated or sad having a bad day?

Jayce Romero (21:30):

Good question. Not really a lot of networking, but I do have Deaf-Blind contact only in, actually in the US there are many Deaf-Blind all over. It seems like most of the Deaf-Blind don't really use that way to contact or the networking. A lot of them don't use the Facebook. They're afraid of being hacked or scammed and because we are Deaf-Blind. Instead, I still go to the Deaf-Blind groups in Louisiana for event, and we socialize and I have trust in that. But I'm thinking, I did ask some of the other Deaf-Blind individuals who are totally blind already, their experiences of eventually losing their sight. And I've learned from them. All their stories are different. Maybe as they grew older or for many different reasons, I've learned from them as well, and they have exposed me to the same and I'm getting to be more confident in it.

Mary Baudoin (22:27):

If he could change one thing about public perceptions of Deaf-Blind individuals, what would it be and why?

Jacye Romero (22:36):

Honestly, I see a lot of people look at the Deaf-Blind, the feeling is kind of an insult, but it's a fact that most people tend to look Deaf-Blind. "Ooh, boy, you've limited in your life." But people are wrong. In my opinion, Deaf-Blind have varying degrees of things they can and cannot do, but they will have something that will make people wake up. Just wake up. For example, one Deaf-Blind in the past, sighted person, could fish. And as he got older, his eyes were getting worse. He tried to go fishing, and they thought, "Well, he can't see anymore." But Deaf-Blind can do that. For example, with an SSP (Support Service Provider), they can guide them to an area, they'll know where they can throw in the line. They can feel the tug of the fish, and they can do that. They can communicate with some assistance, help. The people then are like, "Oh, I see. That's not that hard." They're not thinking. Don't think of it as a burden. Just assistance. That's it.

Mary Baudoin (23:42):

For someone who is hearing and sighted, do you encourage them to approach you with your SSP (Support Service Provider), to talk to you to have a conversation?

Jayce Romero (23:54):

Yes. And sometimes for maybe the reasons, it depends on how people feel. If they feel respectful, "I would like to meet you or I'd like to learn more about your situation." I'm open to that. If a person would ask me, "Why do you have a cane? Why is yours a different color?" For example, my cane standard, what most people see Deaf-Blind is a black, red, and white, that for Deaf-Blind. I'm the opposite. I use orange and white. That's it. Just straight up. People don't understand that. But now people are noticing that and recognize it's a little bit different. Why is it different? Because some of the Deaf-Blind notice that if they do have some sight, but the orange and white, that's for safety. What does it mean? If at night, if I'm using my cane at night, a person can see it because it is almost like neon and people that want to ask questions about that, I am happy to share and explain what Ushers is, what it looks like, how it feels, and people can learn from that.

(24:57):

Some people don't really say anything. I get that. And some people are awkward. They're not sure how to ask a question. And sometimes people are just really, they ask some silly questions. For example, they ask me, "You can see the letters?" And I feel like, "Ugh." It's kind of insulting. So sometimes I'll say, "Yeah, I can see" or "No." But when I say no, I'll say, "Can you please tell me what it says? Can you read it to me?" And then people sometimes won't help. Some people do. They're willing. It varies. Very sticky. What should they do or what should they say? So I just kind of be quiet.

Mary Baudoin (25:39):

Is he afraid of anything?

Jayce Romero (25:41):

Well, I'm fearful for a knife. Kitchen knives, I worry a lot. And I'm very careful. I'm making sure how I'm holding things that I'm fixing to cut. In the kitchen things, I'm fearful. Yeah. And when I go to Helen Keller for the training, they're going to be training me in that area. And I did ask a Deaf-Blind teacher, "Do you mean that hot pot? We're just going to go ahead and hold onto the pot. Oh, no, you're going to have the kitchen mittens, so I won't burn my hand." Yeah, I am a little fearful of it. It's going to take time and I'll get used to it. And another thing I feel a little fearful of at night, because I really can't see, they do have some lamps outside in the dark, but I'll definitely have to use my cane. But where am I going? I can't really see. So that's kind of scary.

(26:35):

That's why I experienced that in New York before, if I wanted to meet my SSP (Support Service Provider) at a certain place, I'll look on my phone, where to go, and I'd use my cane and I'd look on the GPS to show me the area, and then I would meet up. And then it was fine. But I'm learning to be more independent without somebody to have to depend on. Like everybody else is independent, and I want to be that way too. So I'm going to challenge myself.

Mary Baudoin (27:00):

Jayce, what does the future hold for you?

Jayce Romero (27:03):

In the future, I don't know. But my dream job psychologist for mental health work with Deaf, Deaf-Blind community or politics. Yes, politics. But I know that's really hard. It's hard to get a job. For example, I want to be the President of the United States. That's why I think a lot about, if we really could, that would be first in history, a Deaf-Blind president. But for now, no, I really don't think so. But how people would see me. If I wanted to be the United States President, I'd have to spread the word, make speeches to get everyone's attention. And then they might consider voting for me. But that's dicey. I'm not sure. That's not my goal. I'm not saying that, but I would like to be involved in some area of politics. That sounds interesting.

Mary Baudoin (28:00):

Is there anyone that inspires him? And if so, who?

Jayce Romero (28:04):

Yes. One especially, Helen Keller inspires me because her words, who she was, was such a challenge back then. Many years ago, that was a hard life than today with all what we have. We have tools. We have brailling, we have technology, computers, just so many different opportunities and programs like Helen Keller National Center. So it makes the Deaf-Blind their life much easier. And now we have SSP (Support Service Provider) services and vocational rehab support. In the past that was not, we had to have a mentor through Helen Keller. It was a major ordeal. And the teacher became your advocate. And now, back then it was very difficult. It has really progressed. It's much better now. But we have to thank her for her history and the inspiration to the Deaf-Blind community. She's one of the best role models.

Mary Baudoin (29:01):

So our interview is wrapping up. Is there anything that you'd like to discuss, talk about, that I did not get to ask you?

Jayce Romero (29:09):

I think there was a question maybe at the end. Was there something else that I had discussed before?

Mary Baudoin (29:16):

How has being part of the Deaf-Blind community influenced your personal growth and sense of identity?

Jayce Romero (29:24):

When I learned from an interpreter told me about the Deaf-Blind support group, I had no clue about that group. I didn't know that Deaf-Blind community really existed. And then that person told me, and I went to their, and I looked around the room and there was a lot of people from the Deaf-Blind community, and I would see all these tactile interpreting speakers and Deaf-Blind sharing their emotions and their feelings and their concerns. And I did meet a lot of people there that day. And they introduced themselves to me. And it was interesting because we all had the same issue, we had Usher syndrome. So I continued to go back to their meetings. I didn't quit because I'd see the Deaf-Blind and I'm Deaf-Blind. So I wanted to make sure that what helped me to get also to get out of the house and stop the isolation.

(30:20):

And I learned many new things from other Deaf-Blind. People they would share other Deaf-Blind events. So I caught on to all that information and I felt really inspired and I appreciated it and being able to get out. And some Deaf-Blind would say, they would give me advice, and I'd take that and I'd make some adjustments. For example, to go ahead and sign for the Deaf-Blind, the tactile, but I was very awkward with it. I wasn't sure. And I was pulling onto their fingers and they're like, "No, no, no, it's not right. Just a normal, it's just a light touching, just a regular signing." So I tried my best and I made a lot of mistakes. And so I'd ask people to come and I'd say, "Can you interpret for me?" And the Deaf-Blind would say, "Please, I understand. I'll be patient with you." So with their help, I learned as I went on, and I could see it somewhat, but my eyes were declining and I felt "I'm going to go ahead and start tactile and signing because I've got to learn this."

(31:20):

So gradually, I felt better with it. I felt okay because during COVID, I had no plans, no job to go back to. I had nothing to do. I was just very isolated. I thought, "You know what? I need to try to get into the community more." And all of that helped me to grow and learn and learn faster. And I really had trust in that. And I grew personally and have succeeded in many areas, and I've learned a lot from the Deaf-Blind culture. And now that I'm ready for education, I feel more prepared, and I feel proud of myself for succeeding to get into that community.

Mary Baudoin (31:58):

I think that he's an inspiration.

Jayce Romero (32:00):

Thank you.

Mary Baudoin (32:01):

It's been a pleasure to interview you. And I want to thank you and Shirley for being here today. Thank you so much.

Jayce Romero (32:07):

You're welcome.

Mary Baudoin:

Join us at the end of Season 2 for part two of Jayce's interview. 

Vocabulary:

ICC:  An acronym for ICanConnect. iCanConnect provides free equipment and training for people with both significant hearing and vision loss who meet the program’s disability and income eligibility guidelines. iCanConnect is a national program with local contacts that helps people stay connected to friends, family and the world.

SSP: Support Service Provider