Podcast Summary:
In this episode, Jeff travels to the Prevention of Blindness Society of Metropolitan Washington to meet CEO Caren Forsten and Dr. Sulman Alibhai, the organization’s low vision clinical director—and the conversation leaves him feeling something that can be hard to come by after years of appointments: real hope. Dr. Alibhai isn’t focused only on charts, drops, or procedures. He starts with the person—what daily life feels like right now, what has become harder, what’s been lost, and where someone is emotionally before anyone starts talking about solutions.
Caren shares how POB’s “Seeing Hope” programs wrap support around that medical care: local and virtual support groups, tech talks, town halls, and resource centers where people can explore tools and strategies alongside staff who bring lived experience to the table. Together, they frame low vision as a continuum, not a label—and rehabilitation as a steady, human process made up of small, practical wins, encouragement, and the kind of family support that empowers instead of takes over. What comes through most is simple but powerful: you’re not alone, and you’re not done.
Links and contact info:
Prevention of Blindness Society web site – YourEyes.org
Give them a call at 202-234-1010
Full Transcript
Jeff: I just have to say that this conversation with Doctor Solomon Alibhai and CEO of Prevention of Blindness Society, Caren Forsten, allowed me to see hope for people with low vision and going to their ophthalmologist or optometrist and getting more than just pathology, a shot, a drop, and then the door. I wish that everybody could have the experience that people are receiving at the Prevention of Blindness Society, because
this is what it should be. Hope you enjoy.
{Music}
Dr. Alibhai: As much as I’m trying to understand where they are functionally and what things are really affecting them in their day to day lives. I’m really trying to understand where are they emotionally, because I cannot present a strategy if emotionally they’re not ready for it.
Jeff: Welcome to Blind abilities. I’m Jeff Thompson. Today, we’re going to be headed out to Washington, D.C. and talking to the Prevention of Blindness Society of Metropolitan Washington. We’re going to be talking to the CEO, Caren Forsten and Doctor Sulman Alibhai. Caren, welcome to Blind Abilities.
Caren: Thank you. It’s so nice to be here.
Jeff: So glad you can make it. And Doctor Alibhai, how are you doing?
Dr. Alibhai: I’m well, thank you.
Jeff: I heard you got some heavy duty snow out there and you got some power outage going on too.
Dr. Alibhai: That’s right. We’re dealing with a lot of snow, which is unusual for us.
Jeff: Yeah, well, I was introduced to Prevention of Blindness Society by Sree Roy, and he does some workshops out there with POB. And when I heard about low vision, I said, hmm, I got low vision. I have angioid streaks. So I’m familiar with low vision and blindness. So I thought, hey, let’s see what they’re all about. So Caren, I’m going to kick it to you first. Can you tell our listeners what is POB society all about?
Caren: So the Prevention of Blindness Society has been around as a local nonprofit here in the Washington, D.C. area since 1936, and most of our history was focused on prevention and screening children and screening adults. But about 35 years ago, our community members came to us and said that no other agency was really focused in on older adults and their vision challenges. And so our board made the decision to expand our mission, and we’ve been slowly growing these programs now over this time. Just this year, we did another expansion, and we started branding these as seeing Hope, because our hope is that these services will help people as they navigate their futures and see what their possibilities are.
Jeff: I like that the people spoke and POB Society listened. So what kind of programs are available to people?
Caren: So we have a wide variety of programs, probably one of the most exciting ones is that Doctor Sulman Alibhai has joined our organization as our Clinical Director, and I know you’re going to be hearing from him in a few minutes, so I’ll let him go through his services. But we have a whole lot of other, more social support services. We offer support groups that meet both virtually and in person throughout the DMV. Our area is very spread out, and so we try to have support groups in the areas where people live so that they don’t have to travel far, and yet they can meet other people and talk about solutions. Then we have monthly tech talks. Those are virtual. And they address high tech, such as how to use your phone, both your iPhone or Android. They address low tech items like magnifiers, lighting and other kinds of assistive devices. The Meta glasses have proven to be very popular topics on our latest Tech Talks. We have a monthly town hall. This town hall came about during COVID when we were all trying to figure things out, and so we got our community together to talk about the most pressing issues. And that has continued post COVID, where we bring in a speaker to learn about things going on and resources available in our area. And then it’s also an opportunity for our community to raise the issues that are most pressing to them, and then we develop more programs in the future to address those issues.
We have resource centers. Those are in three locations one in Virginia, one in Maryland, and one in D.C., where people can come in one on one and of course, bring their family members. Family members are invited to everything that we do or friends. They can come in and try out different assistive devices, low tech, high tech. They can talk to one of our service navigators to learn about the resources that are available. You know, there’s all sorts of travel resources, and one of our most popular ones is the BARD system, or Talking Books from the Library of Congress, as well as Audible, just to learn about the services that are available. And everyone who serves in our resource centers has a visual impairment of some sort. And so our clients are interacting with people who are walking the walk and talking the talk with lived experiences. And then we also offer friends and family lunches for the group that we serve, which is generally older adults. It’s not always easy to talk about these issues with your friends and family, and people can wind up doing too much, too little to help. So we bring together luncheons where you can bring your friends and family. We have a panel that talk, and then we open it up for questions. We have table leads at each table and really just to facilitate Conversations that promote growth and learning, and just a more open dialogue for everyone.
Jeff: Wow. You covered a lot there. That’s a lot of good stuff. Especially getting the family involved. I mean, learning how to help, not overhelp, not under help, but being able to talk to others about real concerns and strategies within the family structure. That’s good stuff. So, Caren, how does someone with low vision become eligible to attend these programs?
Caren: Mostly they can self-identify. We have a monthly newsletter that posts all of our upcoming opportunities. It’s a vision newsletter, so it’s available in large print and get sent to the home. We also have an online version for people who want to use it and just have it read to them by the PC or other device, and they can call and sign up for these events. Most are free. The only one that I’ve mentioned that isn’t free, other than Doctor Alibhai, is the luncheon, and it’s really just covering the cost of the lunch. It’s easy to get involved.
Jeff: Wow. I highly suggest people do get involved and I like the name of your website. Www.YourEyes.org.
Caren: Yes.
Jeff: So that’s how they can find out more information?
Caren: Absolutely. Then they can also call us at 202-234-1010 and get connected with us.
Jeff: Yeah, I’ll put those both links in the show notes so people can find them.
Caren: Terrific. Thank you.
Jeff: Well, thank you so much. Doctor Sulman Alibhai, welcome.
Dr. Alibhai: Thank you. It’s nice to be here.
Jeff: I thought it was interesting when I was reading your bio that’s on the website and you went into the rehabilitation part or. And prevention part of low vision. Why don’t you explain that journey?
Dr. Alibhai: Yeah, it’s interesting, because when I was at optometry school, of course, I thought, I’m going to end up prescribing glasses, fixing people with contact lenses, or treating diseases of the eyes, and the low vision part was really never there until my final year. We get to do a rotation through a real clinic and you do it outside the school. I went to the University of Houston, so I came to Atlanta, Georgia, and I was in a tertiary care center. Tertiary care eye center means they’re treating diseases of the eyes. And this was a retina, tertiary care center. And as a student, you’re really screening patients and you’re letting them eventually seen by the specialist. And so you’re taking the history. And I had patient after patient say to me, yes, I’ve come for treatment. But, you know, I’m still having trouble reading. I’m still having trouble driving, I’m still having trouble with this, that and the other. And yet during the course of the treatment, it’s only the pathology that was being treated. So they’ll say, I got an injection, I got this surgery, but I’m still having trouble with this, still having trouble with that. And I felt, well, no one seems to be addressing this. They’re coming in for treatment, but the treatment is focused on the pathology rather than on, you know, is it improving their function? And when I went back to my final semester at optometry school, it just so happened my rotation was through low vision.
And having been through that experience of real life clinic, of seeing people who were coming in for tertiary treatment and complaining of functional difficulties, I guess I took a real interest in my low vision clinic to the point that at the end of my rotation, my professors said to me, you know, you’ve really shown a lot of interest, a lot more than most people are thinking of how they’re going to set up their businesses and practices. And so the low vision clinic is sort of a, oh, yeah, that’s something we do on the side kind of thing. And here you’ve taken a lot of interest. Have you ever thought about doing a fellowship or residency in low vision? I said, well, not really. And they said, well, there’s one up at Johns Hopkins at the Wilmer Eye Institute. And of course, you know, that’s sort of the premier place for eye care in the country. And I thought, oh, who would? I’d never get into the Wilmer Eye Institute. And they said, no, no, you should really apply. And I applied and lo and behold, I got in and I did this rotation through the low vision center there. It’s called the Lions Low Vision Research and Rehabilitation Center. And upon completion I stayed in the area.
So that’s in Baltimore. And I came down to the D.C. area and joined that very tertiary type of practice I had done in Atlanta, Georgia, where they had retina specialists treating diseases of the eyes. And I had the opportunity. Now being part of that practice and actually helping the functional end of the vision rather than just the medical end of it and this retina specialty were very keen to address these issues with their patients. They recognized it as well. And lo and behold, now it’s been 33 years of doing low vision only. And I thought, well, after 33 years, where do I go with this? And my practice has grown, the interest in low vision has grown. But I still see patients are frustrated because there aren’t as many practitioners doing this. And I was fortunate to meet with Caren Forsten, who has this vision herself of, you know, why don’t we have something more comprehensive, at least in the metropolitan Washington, D.C. area? And we discussed this merger. And starting this year, I’ve merged my practice with the Prevention of Blindness. And that way I can offer more. And the organization has a lot more resources than I do as an individual. And this hopefully allows us now to develop this into a more comprehensive program. So sorry, that’s a long story to tell you how I got into all this, Jeff.
Jeff: No, I think a lot of people need to hear that. Because to tell you the truth, when I heard that a doctor wanted to come on to this episode, the first thing that popped in my mind was someone that does an exam they can’t fix you and says, okay, I’m done. You know, without any other information available to a person or they give them, here, take these drops. We’ll see you in six months or, you know, whatever the treatment they prescribe. But to see that you’re listening to those clients that came in and talked about this, this is difficult. This is, like you said, a more comprehensive to go into the daily lives of the people, too. So thank you very much for coming on here. I know it’s pretty obvious low vision. I mean, I know it, but why don’t you tell us what low vision is, how it differs from blindness, and what are some of the causes of low vision?
Dr. Alibhai: Yeah, I’m happy to do that. So low vision refers to any level of vision, which prevents you from doing the things you need to see to do on a day to day basis. And it means even after you’ve received the best pair of glasses, the best pair of contact lenses, and maybe even the best medical treatment you can get for whatever condition is affecting your vision, you still find yourself having some shortfalls, being still feeling like I’m not able to see well enough to read, well enough to see a street sign, well enough to see my computer or deal with glare or walk around safely. So as much as insurance companies have tried to define a number, you know, saying, oh well, low vision starts at 20 over 200, which is legal blindness, or 20 over 70, which is usually the cutoff for driving in most states. I often tell my referring doctors that it could be that a patient has 20-40 vision, which is still legal to drive on an unrestricted basis in almost every state. But functionally, they might be having difficulty because they’ve lost contrast sensitivity or they’ve lost visual fields. So like you said earlier, Jeff, you really have to listen to what is the patient experiencing and blindness. We all kind of recognize blindness, when you see somebody walking with a white cane or has no functional vision at all, and are really resorting to using nonvisual strategies, braille or voice strategies entirely for functioning. So that’s really the distinction. But it’s really a continuum. You know, I hate to categorize things as low vision and blindness. And I think of this vision field as a continuum. And along that scale of continuum, we’re going to be able to help people at any end of that scale, maybe early in low vision, and you just need better lighting. Or maybe you’re blind. And now we’re going into Nonvisual strategies and using optical character reading strategies. So I like to think of it as a continuum and not try to categorize it. But I think for the sake of society, you know, society makes these very sharp distinctions and says blindness. And they imagine somebody, they close their eyes and imagine what the world looks like, and think of that as blindness and low vision as anything that’s better than that. If you like the causes of low vision in this country, aging is the leading cause of being low vision or visually impaired, and the leading cause of vision loss in the United States, of course. And every developed country is age related macular degeneration. So about one third of people over the age of 85 experienced this aging change which occurs in the center part of their vision, so it affects their ability to read, recognize faces, thread the needle, see a street sign, but preserves their peripheral vision. So on a whole they can see to get around. But that’s the leading cause. And then we have Glaucoma, which affects more of the peripheral vision, but it can also affect central vision.
And Glaucoma is another chronic condition, just like macular degeneration, for which there is no final cure. And the vision does continue to change, although the newer, better medical treatments are slowing down that process so that at least people retain more functional vision even though it’s changing. But both of these macular degeneration Glaucoma are chronic conditions which will change, and the medical treatments are really trying to keep things from changing quickly and trying to preserve as much vision as possible, and these are individuals who are often seen in the low vision clinic. And then we have conditions like diabetic retinopathy, which can affect young people as well. In fact, the leading cause of vision loss in people in their 40s is diabetes. And again, it’s chronic. We’re never going to cure people of diabetes. And therefore they get complications in their eyes. But we can do medical treatment and try to preserve their vision and keep them functional. And low vision addresses then the consequence of being impacted by diabetic retinopathy. And then of course, there are congenital conditions. People have genetic diseases. We call them inherited retinal disorders like retinitis pigmentosa stargardt’s. And you’re born with these. But they may manifest at different times in your life. And you may need help at school then, or you may need help in the workplace, as well as people who have Congenital nystagmus or albinism. They will also be classified under this category of low vision and need help at different times of their life.
Jeff: Yeah. Wow. You went through quite a list there. And every time you mention a different thing, I knew a person. Yeah, I just went and had an eye exam, and it was just to see if someone that has had these glasses, they said they could help me, but I went to the eye exam and there was so much central gone that those glasses wouldn’t help anyways. But they suggested that I come back in four months and put me on these drops for Glaucoma. They detected it, so it was something that I wouldn’t have gone in just because I have Angioid Streaks. So. But by chance I decided to go through with the process. Had an eye exam and they detected or four years ago there wasn’t any but now they detected a little bit. So they put me on these drops. So that prevention that getting an eye exam. It changed my tone on that. I think it’s important.
Dr. Alibhai: Absolutely, absolutely. And I often tell my patients, you know, Jeff, that just because you have one condition, like you’re saying, you have Angioid Streaks, it doesn’t mean you won’t or you couldn’t develop a secondary issue. And Glaucoma is totally unrelated to Angioid Streaks. Although if you have angioid streaks because you’re very nearsighted, then that’s a risk factor for Glaucoma as well. But I think many of my patients, sometimes, especially the younger patients with congenital conditions, get frustrated and say, you know, but when I go for my eye exam, you know, there’s nothing they can do. And they look and they go, okay, I’m sorry. There’s nothing I can do to help you. So almost the patient feels like, why have you come here? Why are you taking up precious time when you know there’s nothing that can be done for this? So I’m often telling my patients that, you know, you may have this one condition, but it’s so important you have a routine eye exam so that in case there’s something else, they rule it out. And let’s say you have a very short visit with your regular eye doctor. Don’t worry, that’s a good sign. Nothing else was going on. You got done. You’re out of there. Don’t have to worry about that for another year or so. It’s still important. Like you said, you have to undergo a routine eye exam.
Jeff: Yeah, because they called me back in. I had to go in for a full field test and everything as such, and I’m glad I did, because if I didn’t know that, I would not know anything’s going on until it was probably pretty obvious, and I might be buying time for a while.
Dr. Alibhai: Absolutely, absolutely.
Jeff: When should someone be referred to a low vision specialist instead of just an optometrist or ophthalmologist, I guess.
Dr. Alibhai: That’s a very nice question as well, Jeff. You know, the majority of patients that I see are actually referred to me by their eye doctors. And in fact, when people call and say, I think I have low vision, I’d like to come and have you evaluate me. I’ll always say, have you had a general eye exam yet? Or are you seeing a specialist? Because it’s very important that you first be analyzed or your vision be checked for anything else that’s going on in your eyes. So a person should first undergo a routine eye exam and make sure it’s not something as straightforward as, oh, your glasses actually needed to be fine tuned so you could see better. Or oh, you just happen to have cataracts that needed to be taken care of so you can see properly again. So the patients I see are referred because despite that intervention with their regular eye doctor, be it an optometrist or ophthalmologist, they’ve been told, you know, there’s nothing better we can do with the glasses to improve your vision. Or the specialist ophthalmologist is saying, I’m giving you as best a treatment as I can, but now it’s not a matter of making the vision better, but it’s just I’m doing this treatment to make sure you don’t get any worse. So at this point, the patient or you, the individual are feeling So where do I go from here? And that’s the time you should be referred for a low vision evaluation, because that’s the point at which we know now the best has been provided in terms of glasses or contact lenses or treatments in the eyes, and you may concurrently still have treatments in the eyes and comfort, low vision evaluation. But that’s the time now to explore ways to make the best use of the vision that you still have, and address the shortfalls in what you’re experiencing in your day to day life.
Jeff: The more you talk, the more questions I have. It’s just it’s really neat. I’ve never heard a doctor of the eyes really go into this area of the total lived experience of going through this. Which leads us right into what kind of tools and technologies are available for low vision.
Dr. Alibhai: So nowadays, of course, there are many, many different strategies to help people who are visually impaired or have low vision to continue to be independent and functional. And I still address glasses first because people always think, don’t you think if I just tweaked my glasses a little bit, everybody thinks if glasses can be made stronger and people are often told, right, your vision has changed because you need stronger glasses. So patients always ask me, is it possible that there’s any small improvement that could even be made in my glasses, that could help me see better. So I always begin there. I always say, okay, let’s make sure we’ve maxed out what we can do with your glasses, because it’s something we’re all accustomed to using. It’s acceptable to society and you don’t have to feel different. And sometimes I’ll say to people, you know, your current glasses, maybe they’re bifocals or progressive lenses. I’ll say, maybe these are fine. Maybe we have to add another pair of glasses. Maybe it’ll be a pair of glasses just to use for the computer. Maybe it’s a pair of glasses which are stronger, which adjusts to be used for reading. But these special glasses now may come with some other adjustments you’ll have to make. So, for example, I prescribe stronger reading glasses, as people would say, but they may entail holding things much closer.
So people often say to me, wow, how am I going to read holding things this close? And I’ll go, well, maybe this is something you use because you love to read, and in the privacy of your own home, you get under a good light. You pick out your book and hold things closer and read with these. So this isn’t something you have to necessarily use in public, but at least it gives you another way of being able to read, which is something you’re having trouble with. And then there are different types of magnifiers. We use optical magnifiers for things at distance. They’re called telescopes. And when they’re attached to glasses, they’re called bioptics. We use optical magnifiers, like most people would imagine, for looking at stamps or coins, handheld magnifiers or stand magnifiers. The ones we use in low vision are a little bit different than, you know, people pick up at Staples, or sometimes people go on Amazon and find things, and these have better lighting, better quality lenses in them. And then we have electronic magnifiers, what we call video magnifiers, because technology now has become such a powerful tool. And these are portable and they can be used to zoom into things. They change the contrast, they have variable magnification, or they can sit on your desk like a computer and they blow up things you put under it.
You can write with them, and some of these have the ability to read things back to you as well. So some of these magnification systems add optical character reading what we say audio output. So if it’s a long document and even at magnification it’s hard to read, well these gadgets will read it back to you. But I also emphasize to patients that besides these visual aids and tools and technology, don’t underestimate very basic things like and Caren alluded to some of these good lighting. And now we have different types of LED lighting. How to position that lighting? Should you wear LED light around your neck or should you have a lamp? And how do you position that lamp? Don’t underestimate the effect of glare. And we have different types of tints and colors and filters as we call them, that can be attached to your glasses or be worn over your glasses so that you can make transitions more easily from dark to light environments. So see the edge of steps and curbs better. And strategies like the Talking Books program again, that Caren alluded to, the BARD program that puts an app on your phone. So now you can listen to the books that you’re having trouble reading, and you can just download them onto your phone.
And the whole idea of learning, the etiquette of being visually impaired, and all of this is addressed in the low vision evaluation, so that hopefully patients realize it’s not I’m not coming in just for one tool, one pair of glasses that’s going to fix everything. But you’re going to take advantage of a number of strategies. Some may be optical, some may be lighting, some may be non-visual, and some, and I tell patients unashamedly that we’re going to borrow strategies from people who are blind. And there’s nothing wrong with that, because if you’re having trouble getting your ticket into the turnstile at the Metro station, remember there’s a little hole in the little card. And if you can position that in the top left hand corner, it goes in without you having to look at the ticket. So there’s so many tools and strategies and methodologies to help people. And when they come in for the low vision evaluation, it’s hopefully something they recognize that, hey, there are a number of different ways to do the things I was having trouble with. And I tell my patients all the time, keep an open mind. You know, if this strategy is not as effective or it’s cumbersome to use, let’s try a different one, but be willing to explore it. Be willing to try it at least.
Jeff: Same objective. Different way.
Dr. Alibhai: Mhm.
Jeff: Yeah. Like a pendulum swinging from the left to the right where you have perfectly good sight. And then as you swing all the way to total blindness, that area in between where you are on that spectrum is you come to a point of, I think what you’re talking about is the acceptance of it. Okay, I accept that. Let me try these glasses while I’m watching TV, or let me see if I can use these glasses and watch a train go by, you know, task type of glasses. They’re great. But yeah, they’re not for 24 over seven.
Dr. Alibhai: Mhm.
Jeff: And then the digital glasses I think as your sight goes, those digitals give you a bigger screen to kind of pan around and take in what you do, but you make some really good points there of taking tips from those who have walked the path before. And there’s so much information. I suppose that’s what those workshops and support groups help do is share those ideas as well.
Dr. Alibhai: Exactly, exactly.
Jeff: Like over the last ten years, we got that question in here. But over the last ten years, I think I’ve seen so many digital things come, the handhelds all the way to like you’re talking about, the larger ones have come about, have really helped people continue doing the same stuff that they were doing. Like if they want to write out a Christmas card or check out a Christmas card they got, I like it that there are tools that are available to them today. What are the biggest misconceptions that people have with living with low vision?
Dr. Alibhai: I think the struggle people have with living with low vision is they have the constant fear that they’re going to become blind and they’re going to become more and more debilitated, and nowadays with better medical treatments that we have, that certainly isn’t the case. And oftentimes to reassure people that, look, your vision might change and we all change, we age and we change, but we have to learn to adapt. And so I might not anticipate getting old and just being bedridden. That’s not what I anticipate is going to happen as I get older. It could happen. It could be. I’d be that unfortunate that that could happen. But the majority of people age and they have some infirmities and limitations, but they function and they’re able to function whether they’re having to use a cane or walker or whatever it takes. And so it’s the same in low vision is this constant fear that I’m going to lose it all. And I’ll be in darkness. I have to tell patients that that’s not necessarily what you’re going to experience, but you may experience changes. And if you keep an open mind and say, okay, how can I adjust and adapt and how can I continue to function, then you will adopt newer strategies, different strategies.
And of course, like you alluded to, Jeff, that there’s so much change occurring in technology that they will always be ways to get around this. I’m always trying to tell people, my goal is to make you realize that you are not going to become debilitated, and in their minds, debilitated may mean someone’s going to have to hold my hand so I can just get up and go to the bathroom, or someone’s going to feed me, or, you know, I’m never going to be able to go to the theater again or whatever it is I say, you’re not going to become debilitated and you will adjust and adapt, and we will constantly work on figuring out better ways and newer strategies of being able to do things so that you continue to function. And so that I think, is the biggest misconception people have that, you know, living with low vision means now it’s the beginning of the end. Absolutely not. There’s a lot we are going to be able to do and a lot more you’re going to be able to take advantage of, and the majority of people are never going to become debilitated.
Jeff: I was just doing the math. I’ve been dealing with this for 29 years. You’ve been studying it and working with patients and schooling and education with it for 33. So I wish I would have met you back then. I would have followed you the whole way through your whole course. And I talked about acceptance earlier, and that’s a tough part. That’s not that’s something that’s inside you that you have to come to terms with. The abrupt. You might say to you that this won’t work. You have to go to this level or that level, and, you have to accept that at some point, you know, otherwise it’s going to be a struggle. But how do you help people cope with that, that change, especially if it comes suddenly.
Dr. Alibhai: Yeah, Jeff, you hit it. You hit it on the head that that is the most challenging part of the whole process and it is difficult. And I never want to make that sound like, oh, you’ll get over this. It’s easy. You know, I tell people when you experience vision changes, it’s just like you lost a loved one. And what happens when you lose somebody you love? You know, you have that initial shock, that denial, that, oh my gosh, what do you mean? I’m having a vision change which is going to continue to alter my vision, and then you have that sense of depression that sets in when you begin to realize, oh my gosh, this is really something real and it’s permanent. This is not something that is just in a week or two, I’ll be done with it and I can move on. This is something it’s here to stay and I’m going to have to face up to it. And then you go through a period of where you try things. You try to adjust yourself before you finally get to the acceptance. But even the acceptance, it doesn’t mean you still don’t want it better or don’t want it the way it was. And these are the stages that, for all of my patients, I have to recognize immediately as they sit in the exam room with me and the first 15 to 20 minutes of my exam, I’m really trying to understand where they are emotionally, as much as I’m trying to understand where they are functionally and what things are really affecting them in their day to day lives.
I’m really trying to understand where are they emotionally, because I cannot present a strategy if emotionally they’re not ready for it. I, for example, couldn’t say to somebody, yeah, I think you’re going to need a white cane now to get around. And it could be a real shock to them. And they’d say, you mean I’m blind now? And so that that isn’t a good approach. But there are some of my patients that I’ve been following for many years, and I can get to the point and say, you know, I think we should try a cane and see what it does, you know, and that’s more acceptable. They’ve reached a point where they’re open to the idea and I can introduce it, but it’s a process and it is a process that’s going to take time. And we do need other people here to help us through this process. I refer patients to psychologists who do therapy. We have some social workers around here who are very good at counseling patients, and we’re fortunate that the Prevention of Blindness has set up these low vision resource centers. And the people that I work with on a day to day basis are in the office with me. They themselves are visually impaired. So I’ve said to a patient sometimes, did you realize that Ann, sitting out there, has less vision than you do? They go, what do you mean? That lady who checked me in? I go, yeah, no, but she’s visually impaired and they go, she’s able to work here? How does she do it? I said, well, she’s had some practice and she’s got some tools and it’s taken her some time to get adjusted. But yeah, she’s perfectly capable of doing this job, and they’ll have the opportunity then to go out and meet with whoever it is, who’s out there, who’s checked them in, who’s been working with them to come back on a different day and really talk about, well, what did you go through? How did you do this and what was it like? And, you know, it’s a process. And so it can take up sometimes the majority of my exam in helping people come to terms with where they are and where we think we can go with this and how they’re going to cope with it. But the emotional part is always going to be there. It’s the most challenging part we have to deal with. And it is a process, and sometimes we need other people to help us through that process. But it is tough and it is challenging, and it’s something I’m always very mindful of throughout the evaluation, not only the first time I see the patient, but even the hundredth time I see the patient, because everything is constantly evolving and other things in their lives can also be complicating things and making the vision part amplified and more challenging to deal with. So. So that that is really a challenge, Jeff.
Jeff: Hmm. Basically, you moved into the rehabilitation process. When you start taking charge of controlling what you do to help improve your situation.
Dr. Alibhai: Mhm. Mhm.
Jeff: Yeah. Life experiences like the person in the waiting room realizing that the person that checked him in has less vision. I mean those experiences is you can’t teach that. That’s just an experience that makes you want to step up to the plate a little bit. But what does rehabilitation actually look like today.
Dr. Alibhai: So the rehabilitation process itself nowadays has a number of steps. And the first step being the patient has to get referred by their specialist. And sometimes the patients have to advocate for themselves. So again, the Prevention of Blindness does a wonderful job of helping the public understand that people can be visually impaired and in denial or don’t want to accept it because they don’t want to tell their family members they’re having trouble because their children might say, well, mom, you shouldn’t be driving anymore. You shouldn’t be doing this anymore. And people don’t want to lose their independence. So the first step in this process is somebody has to say, you know, go have an evaluation and let’s see if there are any tools, strategies, tips that they can help you with. And getting that referral, making that appointment and coming in is the first step. I always encourage patients, bring somebody with you. Bring your skeptical daughter with you. Bring your spouse, your partner, whoever with you, but bring a friend with you so that at the end of the hour long or sometimes a little bit longer evaluation, you don’t go home and say, gosh, now what did he say about this or that? Somebody else has been there with you, hopefully taking notes, and you go home and you can discuss what happened, what was said and what comes next. So they come in for the evaluation and during the evaluation, like we’ve talked about here, you get assessed for how you’re coping emotionally, how you’re doing functionally and what are the goals.
What are the things, what are the most important things you’re hoping to achieve? And right now, how are you doing them and how much are you willing to adjust and adapt to do them a different way? And what tools and strategies can you take advantage of so you can accomplish them? Recognizing that there are different ways of solving the problems, it’s useful then to visit with. In the setup, we have the Low Vision Resource Center and the staff there who are visually impaired themselves to experiment and try some of these strategies out and see if they work, see if they help. And maybe you saw the magnifier, but now you decided you didn’t like it. Well it’s good, it’s fine. You know, you get an opportunity to try it again or look at the video magnifier again and see if it’s something you can really use or have your iPhone modified so it has bigger print or have your tablet modified so it has Kindle with large print on it. So that’s a good opportunity to come back and work with somebody who’s visually impaired themselves. We’re lucky in the metropolitan D.C. area, we have resources through the state, the Virginia Department for the Blind and Vision Impaired, the Division of Rehabilitation Services in Maryland and Rehab Services Administration in D.C., have rehabilitation, teachers, orientation and mobility specialists, technology specialists who can actually come out to your home or to your place of work.
If you’re a child, then the teachers for the visually impaired will be doing that with you in the school system. So taking advantage of the resources in our community is also very important. And I try to make sure we refer patients to these organizations as well as sign them up for Talking Books or Metro Access, which is an alternative to driving and using public transportation, and then attending some of these support groups and getting to know others who have low vision and learning from them. How did they cope or how do they do these things? There’s nothing like learning how to use the little tricks on your phone from somebody else who’s learned how to do it themselves, and then continuing to keep up with your regular eye doctors for routine eye care. So this is how I see this whole process of rehabilitation. It has many, many components in it, but we take each component step by step, and we continue that process until the individual says, okay, I think I’m good. I’m able to do these things, and I’ll tell the patient, now you come in when you feel you need more help, or you reach out when you think you need more help, or better yet, you now become a support for somebody else. That would be the ideal.
Jeff: Like how you always mentioned friends or another family member. What advice would you give to a family member who is supporting the person with low vision?
Dr. Alibhai: So for family members. I always tell them, you must be patient with your loved one and give them time to come to terms with the changes that are taking place. And I know family members want to help, and sometimes the individual experiencing the vision changes doesn’t want to feel like somebody has to do everything for them. They want to feel they can do it for themselves. So there’s a very fine line between being helpful and saying, you can’t see. To do that, let me do it for you. That’s not helpful at all. So I always try to tell family members, please try to help your visually impaired person and let them ask you what they need help with. So if they’re having trouble with something, let them ask you and say, oh, could you help me look at the expiry date on here. And then you might say to them, yes, sure. But do you have your magnifier handy? Maybe you give it a shot first and I’ll confirm whether you got the right expiry date. So help them enable themselves rather than take over and say, here, I’m going to do it for you. Because of course, now you’re totally useless. Now that you have low vision, that’s not a good approach. But again, be supportive and be helpful and recognize they, your loved one, may go through ups and downs and be angry or be upset, but that’s understandable given what they’re going through.
So be patient. And even if they say, I’m not going to be able to do this and leave in anger, don’t worry. Just help them recognize that this time you’ll help them. But we’ll find a strategy so they can do it themselves. So family members play such an important role. And this is why, as Caren was saying, we have this family Gathering support group meeting, where it’s a luncheon and the visually impaired person brings a family member to the luncheon. We have a panel of visually impaired people, and they talk about a specific thing like, how much should I help my family member do? And other people who are in the support group meeting, other family members, get to see firsthand what works and what doesn’t. And oftentimes, this is when their loved one will stand up and say, gosh, I hope now you realize what I’ve been saying all along about how I want to be helped or not helped. And again, it’s important for the family member to participate in these support group sessions and to participate in the low vision evaluations, even during the follow ups, so they can understand what recommendations were made and what they should be helping their family member do.
Jeff: You make some great points. I taught at an Adjustment to Blindness Training Center, and I taught woodworking and all the points that you’re making, they’re right on there, spot on, and made me think of the story I used to tell. Little Billy comes home from school and is hungry, so he opens up the drawer and pulls out a knife, and he wants to cut some cheese and put it on some crackers, and the mom hears what he’s doing, and she comes out there and takes everything away from him because the knife is sharp. Well, the next day he comes home. She hears the silverware drawer open, and she quickly goes over there and takes over. And this goes on for a while, because now she hears them in the cupboard. Now Billy doesn’t have to do anything. He comes home and there’s a plate on the table with crackers and cheese, and he never learned how to do that. Taking over for someone doesn’t help the situation, it just makes them more dependent. And that’s what I was hearing through some of those stories you were telling. And that’s great. Other families see that because a lot of people don’t know what they don’t know yet.
Dr. Alibhai: Exactly, exactly.
Jeff: And they might be thinking they’re doing the best thing they can do.
Dr. Alibhai: So true.
Jeff: So, doctor Alibhai, what should someone expect from a visit to one of the Low Vision Resource Centers?
Dr. Alibhai: So the Low Vision Resource Center is where we have visually impaired people teaching the low vision patient who I’ve seen or hasn’t seen me yet. Sometimes to actually adapt the tools and strategies that I have prescribed or recommended during the evaluation into real life. So the Low Vision Resource Centers have all the tools, all the strategies, all the resources that I have in the exam room with the benefit of a visually impaired individual there to guide you through the process because they themselves are familiar with the tools, the strategies, and the methodologies that I’ve been prescribing, and they themselves are end users of these things. So the Low Vision Resource Centers serve as a catch all for many things. Sometimes people just come and talk and want to vent their frustration or talk about the emotional impact of having to cope. And the Resource Center can just be that somewhere you can come and chat, and then they’ll put you in touch with some of the support groups or encourage you to join some of the support groups. Sometimes people come in with a specific thing they want to do. I’ve recommended a magnifier, but we don’t know if it’s going to help you thread your needle. So they come in with their needle and thread, and they’ll test the strategy and see if it works or not. And sometimes they come in because they’ve heard that there’s an alternative to public transportation, and they want to learn how to use it. So again, the individual there probably uses it themselves and they’ll say, yeah, this is how I use Metro Access and this is how you apply and this is how you sign up for it. Or they come in because they want to put an app on their phone, which is going to be able to read something to them, and they need to learn how to use the app properly. So the Low Vision Resource Center serves as a place to learn how to use the app, install the app, or modify your iPad like I was saying earlier, so you can put another app on it and read your books with it. So Low Vision Resource Centers have a lot of useful things that cannot all be covered during a low vision evaluation, where I’m much more focused on finding where the functional needs are and how to maximize the functional vision. But I often talk to the staff at the Low Vision Resource Center and say, so when this person comes in, make sure you do show them this or tell them about this or do that or the other. And a lot of the staff from the Low-vision Resource Center would say to me, now, next time this person comes in, they had questions about this or that. Make sure you address them when you see them. So it’s a wonderful catch all place.
Jeff: Key word is resources because I tell you what blindness or low vision, when it occurred in my life, I had nothing to draw upon. I do remember the one gentleman with a white cane that was crossing Nicollet Street. I remember pausing one time. I glanced over and I just thought, oh wow, a blind person. But that stuck in my mind. I don’t know why I remember that. And then later on in life, I’m in this particular area of blindness and low vision, and it still sticks with me. But that’s all I knew about it, and I wanted to meet people. And I’m glad that Prevention of Blindness has that ability all the way from support groups to workshops to the Resource Centre. And they got you, Doctor Alibhai, to make sure that people are getting listened to. So thank you very much for what you’re doing out there.
Dr. Alibhai: Thank you Jeff. And remember, you’re part of this village that helps by creating these podcasts. And you yourself being visually impaired, telling people about this is really so valuable. So thank you.
Jeff: And Caren, thank you for what you’re doing, bringing awareness and partnerships out there so everyone can be supported and make sure that these types of opportunities are available to people.
Caren: Thank you so much for having us today, and thank you for all that you’re doing to make people aware of all the things that are available.
Jeff: Well, thank you both. Doctor Alibhai, I just have to say, I’ve never heard a doctor speak on this side of vision loss and blindness. It’s always been the other side, behind a desk and waiting for the next patient.
Dr. Alibhai: Oh, thank you, thank you. It was, it was fun. I enjoyed our discussion today.
Jeff: Well, I suppose you got to grab a shovel and get out there and clear some snow, huh?
Dr. Alibhai: That’s right. Get the power back up.
{Music}Jeff: For more podcasts with a blindness perspective check us out on the web at www.blindabilities .com. And if you want to leave some feedback give us some suggestions give us a call at 612 367 6093.
We’d love to hear from you. I want to thank you for listening and until next time bye-bye.
[Music] [Transition noise] –
When we share-
What we see
-Through each other’s eyes…
[Multiple voices overlapping, in unison, to form a single sentence]
…We can then begin to bridge the gap between the limited expectations, and the realities of Blind Abilities.