This episode of Inform & Connect features Sylvia Stinson-Perez, director of the Vision Specialist graduate certificate program and the Independent Living Services at the Older Individuals who are Blind Technical Assistance Center (OIB-TAC) at the National Research and Training Center on Blindness and Low Vision at Mississippi State University.
The conversation centers around the issues the blindness and aging in our communities and across the country currently face.
“Less than five percent of the aging population that are losing their vision utilize rehabilitative services,” Sylvia says. “They simply do not know such services exist – something we’d like to remedy.”
“It is my hope that this conversation raises awareness to people and their families that are facing vision loss,” said Melody Goodspeed, AFB Major Gifts Specialist. “Sylvia’s passion for reaching those in need is powerful and a subject we must explore.”
Melody: Again, thank you everybody for joining us today. We are really tackling a subject that we haven't talked about before on our podcast. And I'm super excited that we get to do this with Sylvia Stinson-Perez. She is amazing. You guys are going to love her. And she is with Mississippi State. And her title is very long. So I'm going to say she's at the NRTC at Mississippi State.
Sylvia, thanks for joining us.
Sylvia: Thank you, Melody for having me. It's such a pleasure to be here with you.
Melody: It is such a pleasure to be here with you too, for multiple reasons. But I'm really excited to tackle this topic, because I really believe that it's a huge one. But I want everyone to get a sense about you and your background. Can you fill us in on your professional and maybe a little of your sight loss journey?
Sylvia: Okay. I was born with a visual impairment. In fact, I was legally blind. I had no idea what that meant until I got older. However, I will say that my family never really treated me like that. I was expected to do all the same things everyone else in my family did. I could read really close up, and I mean really close up, but I couldn't play baseball or see signs or drive. So my peers were really thinking I was very different. So I grew up with not very many friends.
Fortunately, I had this great supportive family who believed in me and believed that I could accomplish anything I wanted. So after graduating high school, where I really learned to listen, because back then, there really were very few accommodations. I did have a teacher of the visually impaired, who worked with me a couple times a week, and then in high school once a week. But I was still expected to do everything in the classroom on my own and no accessible materials. If it was on the board, I had to figure out how to get it, which usually meant I didn't get it. So I really learned how to listen and be a really good problem solver.
I went away to college and got a master's degree in social work. Met and married my husband, and we moved to Miami, and I started my job search. About the time also that I started my job search, I started to realize I was really having a hard time seeing the computer. I was having to put my face right against the computer, and sometimes I couldn't read it. So the job search process was really challenging, and I really started to understand discrimination. And I had had jobs in high school, where I had experienced a little bit of that, but somehow I always seem to make it work.
So now I'm going into my professional career, and I'm seeing, wow, people really do see me as not capable. And I knew I was capable, and I was really fortunate to meet someone, when I went for some computer training on accessibility, who really believed in me. And I started to work at the LightHouse, the Miami LightHouse, and that is where my career started. I don't think I ever even knew about the whole field of vision rehabilitation or anything. And now here I was in a world where I could make a significant difference in people's lives. And I actually, in the next few years after that, left the field, but always returned back, because I just found such a passion there.
Over the years, I've worked with all ages, I've worked with babies through seniors. And I can't tell you that I have a favorite group. There's something I love about working with every single group. What I can say is that I've experienced that the least good services go to the older individuals though. And we're going to talk about that in a little bit.
Sylvia: But just a little bit more on me is that I did learn in my mid 20s that I had retinitis pigmentosa, and I knew what that meant at that time, that I was going to experience significant vision loss. And today I really only have light perception and not much of that. But on the personal side, I'm married for a bunch of years, more than 25.
Sylvia: And we have an adult daughter who is 21, in college. And I have lots of hobbies. I told you I didn't have tons of friends in school, but I have just a wonderful network of friends, who I just adore, like Melody.
Sylvia: And so many others. And I love to read and cook and do crocheting. My real passion is making a difference in people's lives. Whatever I can do to make a positive impact in people's lives, especially people who are visually impaired. That is really where I find just great joy. So I was the CEO of the LightHouse for the Visually Impaired in New Port Richey, Florida for 10 years. And then for the past two years, I have been at the National Research and Training Center on Blindness and Low Vision at Mississippi State University. So that's me.
Melody: And what a big, wonderful introduction that is. Sylvia and I become friends in partnering up in so many different ways, because we do have a lot of same passions, including fashion, at which we are wearing, yes you guys, the same jacket. Might be clashing with my big red chair, but she looks amazing. We do love to shop together. But one thing she and I were talking one day over a conversation that really floored me and when I said, "We need to talk about this topic," is you told me that there are less than 5%, everybody I'm going to repeat that again, less than 5% of older individuals experiencing sight loss that know about the services that they can get to live independent lives. Let that sit for a second. Can you tell us, Sylvia, what that looks like for these individuals, when it comes to independence, when they don't know?
Sylvia: Absolutely. Well, we know that at least 20% of people 65 and over are experiencing some visual impairment, uncorrectable visual impairment. So we're not talking about, "Oh, you just need to go into your doctor and get some stronger glasses." We're talking about people who have macular degeneration or diabetic retinopathy or glaucoma, conditions that cannot be corrected. They can be treated to some extent, but you're not going to be able to regain 20/20 vision or even 20/20 and 20/40 vision. And as the age goes up, so does the percentage of the population that are visually impaired.
So if you're 80, it's way more than 20% of that population. Yet, less than 5% of people seek out services. And as I said, I've been in this field for right around 20 years. And most of that time was spent in Florida, where we have large numbers of older individuals, large retiree populations.
And yet, it would be very difficult often, to get people to accept free independent living skills training. And then we would have many times, I can't even count the number of times my heart was broken, when someone would say, "If I had only known that these services existed two years ago, five years ago," sometimes even 10 years ago, "This would have made a difference for me. I wouldn't have had to go into a independent living center or assisted living facility or a nursing home."
Melody: Or even retire early.
Sylvia: Or retire, absolutely. There are so many people who quit their jobs or retire early because they think, "I cannot work anymore. I can't use the computer. I can't get to the appointment." They just think they can no longer do the job anymore. And it's so not true. It takes some training, it takes some skills. But absolutely people can. You and I, Melody, are great examples that people who are blind can and do work, can and do have real lives, have families, have children and have hobbies.
Melody: Yes, and friends.
Sylvia: I want to make sure as many people as possible get that message and don't go hide in their house.
Melody: Yes. And that's a really good point you bring up. A lot of us, and I know it's a little bit hard to hear, but it's really important because we are going to bring in a little bit later here, what we can do to do that and change that, advocate for this.
But when you think about your own lives, whether you can see or not, just thinking about these plans that individuals like myself, like Sylvia, like the people that she talks about, you have plans for your lives when you grow up. We all feel like we have that right to work and to retire and to grow. And having these roadblocks that people just don't know about, when you have those, or not being able to fall into acceptance. And that's something I wanted to talk about a little bit, because I want to bring that up. You talk about people saying, that you talk to, that just can't accept that. What does that look like in an older population?
Sylvia: Well, if we think about our older population, our aging population. Well, if you think about most of us, vision loss is a low incident challenge. Not tons of people have a visual impairment. Many people would say they've never met someone who's visually impaired or blind. Now I would counter and say you probably have, and just haven't realized it.
Sylvia: But if you think about people who are blind, who are using canes or guide dogs, we really do not represent a huge portion of the population. We're a small group. And so, people might have never encountered someone who's visually impaired. And so therefore they don't know what's possible. And we all think about what's possible for us, based on the knowledge and experience we have. I know I think about things, I hear about situations and I go, "Oh, I'm not sure that I could adapt to that. I'm not sure that I would even know what to do with that." Because I don't have experience with whatever that situation is."
And so that's people's response to blindness. An employer, someone who is losing their job, or an employer, they put themselves in that situation. They go, "Could I do this job if I were blind," or "Could I do this job if I were a low vision?" And if they think in their head, "I don't know how I could do that," to them that's no, it can't be done, or it's going to be way too challenging for it to be done. So exposure is what really makes that difference. People who have experience with people who are blind totally get that we're capable.
Melody: Exactly. And I love the point that you bring that up, because there are so many times, no matter if we're talking about blindness, if we're talking about, like you just made the point, there's situations I've even heard, like I don't know how I would handle that. We have all been there. That's something we all, in this group here, our fun little group of this podcast. And furthermore understand, we all experience that.
But when you have that area where you are the employer, which then people try to hide what's going on. And they don't do well, and they think, "Okay, well, you're going to get put on a performance review." Right? Because maybe you aren't doing something. And all they would need maybe is a magnifier, or to be able to openly say, "I have a visual, this is happening. How do we work around it?"
I've heard stories where an employer knows about it, and they understand and they're like, "Okay, well, we figure this out. We just figure it out." But there are too many situations because even though there are an estimate 32 million people in the United States alone living with blindness and vision impairments, is because I think a lot of us don't have that experience of being able to thrive and move into what it is we clearly want to do. But I see a lot of that more inclusion taking shape, and that's something we really do try at the American Foundation for the Blind, to bring forward and also at Mississippi State, because you guys are great match partners with us there. How do we open the eyes of employers and other people to see that there are those areas and to change those perceptions?
Sylvia: First, I would speak to the people, to listeners who are themselves visually impaired. We must have the skills to do the job, and that's critical. We must have the technology skills, we must have the mobility skills, the travel skills. We have to have the social skills. We need to be the employee that we know that that job requires. We need to meet those expectations. And we can't really have excuses. Now, that doesn't mean that we can't get accommodations, but we need to clearly know, like I know that I have always had to work harder than my sighted peers at work, always had to work harder. Maybe it's not harder. I've always had to work smarter. I've always had to be a problem solver. When I didn't know how to do something, I needed to figure out how am I going to make that happen?
How am I going to adapt that? Because we can't count on our employer to come up with those creative adaptations because honestly they don't know them. So we have to figure it out. And then we bring them along to help us incorporate those adaptations for us. So number one is we, as the visually impaired people, have to have to make that happen for ourselves, we have to be capable. And demonstrate that because if an employer hire someone who doesn't demonstrate that, that is then their impression of everyone who is visually impaired.
Melody: It's the truth.
Sylvia: We are the role models. Whether we like it or not, we represent blindness for every person we encounter in life because the person who sees us, the next person they see who's blind, they're going to remember that person who I saw before. And they're going to expect the same either strengths or expect the same limitations. So we have to be very careful that we are able to represent well. For employers and not only just employers, but even coworkers because they can play a great part in ensuring that someone is successful, is that if they don't know anyone who is visually impaired, it's all about diversity and inclusion. Find a way to get to know success stories. It's easy, all you do Google and you can find play and YouTube videos, and I think probably AFB has some. We have some that Mississippi State. Just get out there and see truly what people are capable of. Sometimes people are afraid to ask, "How do you do that?"
Sylvia: I have people always going, "How do you use the computer? How do you use your phone?" Ask us, look it up. Because I think then we become normal, we become just like you, because we have the same kind of dreams, the same kind of goals and the same kind of ambitions as everyone else.
Melody: Yes. I love it. And you were talking about working smarter. I mean, what a better employee to have somebody who is so dedicated, putting their heart and soul into it and also are innovative. I can't believe we are already at question and answer. Sylvia, I just love being here with you. But before we move into that, what I want to say is just thank you for bringing this to our attention. I know a lot of things that really bother me is having people that, you brought up retirement, that go into retirement communities where there are no sidewalks, where life can be frustrating. And you've spent your life fighting, and you want to retire and have that same retirement life with someone else. Do you have any suggestions for that? Because I know that's something that's been near and dear to my heart lately.
Sylvia: I would start by saying, we all need hobbies. We all need to develop hobbies, which means we have to be adaptable, we have to find adaptations to do things. We all need to put ourselves out there and be social. Social isolation is a big issue for older individuals in general. But when you add in vision loss to that, it becomes even a greater issue. So making sure you stay connected to people and it doesn't need to be 100 people, it may be just two or three, really good people who encourage you, who got you out there to keep engaging in life.
Melody: I love that. And it's true. And I think that speaks to everybody now with the COVID situation we've been in with social isolation. So telling all of you before we do that, call up a friend and tell them you love them. That's my thing for today. Sylvia thank you so much. I know people probably have lots of questions for you, and I want to open that floor. Thanks again for being here with me today, this has been great. And thanks for helping me take on a topic that we really do really have just started the conversation right now.
So take it away, John. What do we have?
John: Thank you, Melody. Thank you, Sylvia. I'll begin with a preselected question. Sylvia, how do you know when you need independent living skills or O&M training services?
John, I love that question because unfortunately, a lot of people think I'm making it, I'm okay, I'm managing, I'm not hurting myself, I'm okay. When in fact, if you could just get some training and independent living skills, such as learning to safely cook, using markings on your stove, learning to safely cook, learning to safely manage your own medications, to manage your own finances. Orientation and mobility training, picking up that cane, it's a scary thing and a lot of people are embarrassed about it. But then once they get it and they realize how much freedom that it gives them and how much safety and more confidence. So it's not about I have to be a certain visual acuity, like I have to be determined legally blind. No, it's about when you're having a difficulty and it's impacting your life, your ability to live your daily life as you want, then it's time to get help.
So a great example is if you hate to cook and you never plan to cook, you don't need to learn how to cook using adaptive skills. That's okay if you've made that choice. But if you're someone who has always loved to cook, and now you're afraid to cook because you can't see the burners or the burner knobs, that's not okay. That's when you need to seek assistance. If you are not going out of your house anymore, you're not going to the mailbox to collect your mail. You're not going to the grocery store because you're afraid you're going to fall or not recognize someone and be embarrassed about that, or you're afraid to go to a restaurant because you might spill food off your plate, that's when it's time to seek service, when it impacts your life.
Melody: That was excellent response.
John: Thank you for that, Sylvia. We are getting some in the chat now as well. I'm going to go to another. What advice would you give to someone that is experiencing vision loss and afraid to tell their employer?
Sylvia: Yeah, so I think that this happens a lot. It unfortunately happens a lot. And if you don't tell your employer, what ends up happening is you end up making mistakes and those could be costly mistakes. And what I do know is that we all have this perception that when we think we're doing okay, we're thinking, "Oh, okay, I'm not falling down, I'm not running into things. Obviously, I might be here and there, but it's not super obvious." I have come to find out that the whole around you often is very aware.
And so if you're having visual impairment at work and it's impacting your work, your employer, your coworkers all have some clue. So sometimes it's a relief to tell them because otherwise people make assumptions. And I'll give an example is that when I needed to start using a white cane to get around, someone said to me, "You have a choice. You can choose to look blind or drunk." And that's so important and so true. And I've had several clients tell me over the years, their family members, their employer, their coworkers, whatever were really glad when they finally acknowledged it because they could help them.
John: Thank you so much for that. Here's another, one from the audience. Hi Sylvia. In your opinion, what role does denial play in an older individual's response to sight loss?
Sylvia: I love that in my opinion. There are a lot of people in denial. I lived in denial for a little while that I wasn't losing the vision that I was losing and or that it didn't matter, that people didn't notice. So I think there's a part of it is that they're not so much denying that they're not having problems, it's that they're denying that they even have a vision problem. So often in aging it gets attributed to, "Oh, I'm just getting old. I'm getting forgetful." Maybe they can't find their remote control or their telephone. When in fact, the reality is they used to could just walk into a room and scan the room because that's what sight is for, lucky enough to do when you lose something. You just scan a room and, "Oh, there's my phone."
And if you're visually impaired, if you don't put it back in the same place every time, you spend time searching for it. So now we think, "Oh, I'm getting older. I'm having some memory problems." Or maybe they used to read lips and now they can't see and they go, "Well, I'm just having some hearing problems. I'm not hearing people as well." So they're attributing it to things that aren't necessarily what it is. So there's a denial that there's even a vision problem. And then of course we add in the diagnosis, "Oh, it's not going to get too bad." And a lot of that, I think really goes back to they don't know how prevalent it is because there's this whole group of people who are trying to hide it and fake it till they make it.
And just pretending that they're okay, when, if in fact we could all just kind of acknowledge, "I can't see and that means I might need help sometimes." And I love the Helen Keller quote, "Alone we can do so little, together so much." We are fiercely independent, most of us, are fiercely independent. But to me, independence means I am only independent when I acknowledge that there are things that I really can't do well, that if I ask someone else to do for me, or I get help doing, don't waste hours doing, that makes me much more independent. Because guess what? There's no single individual in the whole wide world who can do everything.
Sylvia: We all need help once in a while.
John: Right. And the picture you paint, it's almost like everyone thinks they're the only one.
John: And it's reassuring to know that they're not.
Sylvia: Not even most, the only one.
John: Right. So how has COVID impacted people's access to rehab training services?
Melody: That's an excellent question.
Sylvia: Yes. COVID has had a tremendous impact, especially for the older population. There are still many, many people who are getting no services at all. And that's not for lack of trying. The people who are providing services, rehabilitation teachers, and therapists, as well as orientation, mobility specialists and assistive technology specialists, they're all attempting to. But then when you add in some of the challenges of aging, such as hearing loss or lack of technology skills or lack of technology, period, we have a whole lot of people who live in rural areas that do not have access to internet in this country.
And so they aren't able to get services virtually. And then they're a population that we need to be much more cautious with. So getting that in-person service is very challenging. So people are trying to do the best they can, but it has had a negative impact on them, for sure.
Melody: John, do we have one more question?
Sylvia: I do want to point out that services, independent living training, orientation and mobility, are services that are provided at no cost to people. And as we talked about, less than 5% of people are accessing those. So it's really important to find those services in your state agencies or at a private agency, because they really can make a big difference. And I've seen thousands of peoples' lives completely changed for the positive.
Melody: That's the question I was going to ask, is accessing those services because I don't think that people know. I know myself when I found out that I was going to be blind that that was something that I really struggled with. But I also want to add to what she's saying is that if you see someone who is struggling, if you see someone who, is A, to be there for them and let them know that you're there. And B, we in this area can Google services. In Virginia, there's the Virginia Department for the Blind and Rehabilitation Services. There's organizations you can contact, AFB, we can put you in, there's LightHouses. There are many places to go, but we are not alone in this. And it's okay if you are someone who is sighted and you see someone, because for me, that really did happen for me, was having someone say, even through my anger and frustration, that there is light at the end of the tunnel of being able to find that acceptance and peace and we can all do it together.
Sylvia: It's a hard journey. But the independence that you can gain is completely worth it. And as I said, life is not over. Many people have come back and said, "I was able to make positive life changes as a result of this vision loss." So they weren't saying, "I'm glad this happened to me," but they were saying, "I was able to make positive life changes after this happened to me." I will point out that you can go to www.OIB-TAC.org, and we actually have a list where you can get the services in your state as well.
Melody: That is wonderful. Thank you so much. Sylvia, it has been a real joy to have you here today. Thank you for helping me tackle a topic that is really difficult one, but you've made it lively and aware and I feel like we are all better for it. And just think everybody can all walk away with, if you have a challenge in your life, we've all learned something from it and we're going to keep going and we're always better together. So thank you so much for being with us today. And if you have any questions you can visit, you want to tell us again, Sylvia?
Melody: And you can always visit AFB.org to check out what we're doing.
Sylvia: Yours is so much easier.
Melody: We're really bringing this to light in our [inaudible]. You just go to AFB.org/ 100. You guys, thank you so much for being with us today. Sylvia, extreme pleasure, and I'm so glad we got to be twinsies in our outfits. Many props to Cindy for that. Take care of you guys. Have a great day.