February 10, 2011

“Crossing The Line From Visual To Nonvisual Skills”

Posted in: Daily Living, Low Vision Rehabilitation

An Interview with Maurice Peret
(Blind Industries and Services of Maryland)

Dan Roberts, Moderator
International Low Vision Support Group
February 10, 2011

Dan: Welcome to our webcast, Maurice. Please tell us how you became blind and how that led you into your work as rehabilitation trainer for Blind Industries and Services of Maryland.

Maurice: How I came to work at Blind Industries is a bit circuitous, but I went blind in infancy and grew up doing most of the normal things that children do: not not really identifying myself as blind, per se, but just that I was different. So I grew up as, I guess, what I thought to be partially sighted at the time. Then secondary glaucoma in my teenage years caused a very gradual deterioration of my perception. So I’ve been totally blind for over 20 years.

Dan: Long enough to become an expert at it. And that’s why we have you here today. We with macular degeneration are all pretty much new at this, unless we are in our 80s or 90s and acquired this disease as long ago as you did. And so we have a problem with having had vision for most of our life, and then having had to make the transition, or what we call crossing the line, from visual to nonvisual. So I think we’re going to get into that a lot today.

Before we do, however, you have earned the unique honor of being called ”the other blind guy who climbed Mount Everest”. Would you tell us a bit about that fascinating experience?

Maurice: Actually, I was listening very carefully to your introduction about how I was selected to participate in the Mount Everest base camp team, because I was waiting to hear an answer. I was hoping we would get into that, because I was wondering how I had become selected to be part of it.

I just know that I was on vacation in northern Pennsylvania back in December 2000, and I checked my home answering machine. There was this message from Dr. Marc Maurer, president of the National Federation of the Blind, and my first response was that he doesn’t just call me for no reason. I thought maybe I was supposed to be somewhere, and maybe I was in trouble for something. I called him back, and he asked me if I remembered this guy named Erik Weihennmayer, and I remembered hearing of him at a former national convention. He was talking about climbing mountains and climbing ice faces, and I thought this guy was just nuts. That was my impression, and now all of a sudden I am being asked if I wanted to become part of the base team to handle communications to help get the message of the NFB out into the world about the first blind man to climb Mount Everest.

I was broadsided, and my first question was, “You’re kidding, right?” And if anyone has anyone has ever heard a speech or talked to Dr. Maurer, he’s got a great sense of humor, but not quite that flippant. He definitely wasn’t flippant, and he wanted an answer within 48 hours. The bottom line for me was, if I give up this chance, someone else will have it, and I’ll probably spend the rest of my life wondering what would it have been like. So I jumped at it, and I mostly don’t regret that decision. It was quite a fascinating trip and experience.

Dan: What would you say is the key ingredient to reaching that level of achievement and similar levels of accomplishment that you have achieved, and which other people with virtually no vision are able to achieve?

Maurice: You know, I’m trying to think what that ingredient is. If it’s a characteristic or a personal attribute. Or if it’s the right words or the right technology. And I’m left at somewhat of a loss. I guess in my case it was that I was hungry for that opportunity to have an impact in some way and have experiences that often times people who are blind simply don’t have, or are not offered. Or, as we are losing vision, at whatever rate, we tend to limit our experiences and slow down or stop doing having experiences.

I was at a point in my life where I saw lots of opportunities go by while I sat waiting, and here was a great opportunity to go somewhere I never thought of going. So I was hungry for it, and perhaps a little insanity doesn’t hurt, but I just went for the opportunity. I think it’s having the guts or not having the reason to not accept a challenge like that when it’s presented.

Dan: Do you think youth had a lot to do with that?

Maurice: You know Dan, the easy answer would be to say yes, it has a lot to do with youth. But my experience tells me that I am surrounded by people with whom I work who have me by quite a few years and are embarking on careers and new skills. So certainly youth is part of it, but I think there are studies that show the brain’s capacity for learning new skills even after 50 years old, so the capacity to do that is there.

The willingness is what we’re talking about. Being daring and getting out of our comfort zone. My experience tells me that there are people doing this all the time: people who I am inspired by. I might add on that at the Mount Everest expedition, there were four or five world records broken. One was Sherman Bull, who was 64 years old at the time. He broke the record as the oldest man to summit Mount Everest.

Dan: Okay, I’m glad you didn’t give us the easy answer. It isn’t easy, is it, being blind or losing vision? But we can do something about it, and that’s what we’re talking about today. You are committed to the belief that alternative techniques can help a blind or visually impaired person to match the abilities of his sighted counterparts. Do you think that is possible in every situation?

Maurice: Before I had embarked upon by journey into this whole field of blindness, I’m not sure how I would have answered that. Probably “no”. What I’ve learned in my development in the field, professionally and personally, and what I’ve seen time and time again is that yes, it is possible. It is possible in every situation despite acuity, despite the different situations, and even additional challenges. I’ve just seen too many wonderful stories, miraculous stories, of people who have regained their lives and done things I never thought they ever would have thought of before the onset of vision loss. So I absolutely believe that it is not only possible, but that it’s within sight to even expand those numbers of people who would take on challenges like that.

Dan: What are the most important skills for a newly impaired or blind person to acquire?

Maurice: You know, there are very basic core skills of blindness that should be achieved, and it would be hard to single out what they would be. Whether it would be information, communication, Braille or large print, or travel skills. But since you’re asking about the single most important, I believe it has to do with one’s mindset or attitude. I like to call it one’s philosophy, and I realize that people cringe sometimes at that description, but it is a way that we need to begin to think of the world and to think of ourselves, and to think of our disability, if you will, differently than it has been ingrained in us to think.

So the most important ingredient is to have that attitude change, and the only way I know to achieve that is to be surrounded by people who reflect or model those attitudes. People doing things that I sort of dismissed for myself, because, after all, I was blind. And so, it’s being part of a community and seeing oneself as something more than the disability would have us believe about ourselves, which tends to be less.

Dan: We did find in a recent study that we were doing that up to 99% of skills of daily living skills that we have as a visual person can be replaced, supplemented, or substituted for with nonvisual skills. Do you agree with that figure, or am I just being optimistic?

Maurice: I think you’re being optimistic, but I think it’s entirely realistic. Generally, I will sit down with a new student with whom I’m working, or a newly blind person, and play this little game. I once did this with a group of first graders. I said, “Try to think of what blind people can’t do,” and one smart aleck raised his hand and said, “See.”

I couldn’t argue with that, but by and large, people will come up with all kinds of careers and duties and tasks for which there is always a way. if I don’t know how to do a thing nonvisually or by using alternative techniques, I know somebody who has. Until recently, the one thing we had to put on that list is driving, and it’s made quite a lot of press. But that technology is being put into place experimentally at this point that answers the question definitively that even driving is not off limits. It can be done in an alternative fashion. It is all about how we can rewire our brains to think. We are wired for vision, there’s no doubt about that, but can we rewire or rethink how we do things? Absolutely.

Dan: A common low vision rehabilitation model recommends a training period during which all skills are introduced, after which more intensive practice and specific skills is offered as needed. How effective has that approach been in your field of work?

Maurice: You know, that’s a much bandied about discussion, and I don’t know there is sufficient scientific data that can say for a fact that one or another approach is statistically more effective. I think that that’s one of the weaknesses of the blindness and low vision field, is that we need to compile that kind of research.

But I’m familiar with a number of those models. I’ve worked in environments that offer the approach that you described. You’ll forgive me for using shorthand, because there are pitfalls to that, but what you described I have often described as the cafeteria approach. Here are the skills that are available, and you can make up your mind, so when you think you might need Braille, come back in a few years. Or cane travel, where you don’t travel that much now, and people take you to the grocery store. Maybe in a few years if your vision gets worse, you might want to come back and we’ll teach you how to use the cane.

The problem to me with that approach is I believe in a process by which people should try to get the fullest benefit of what a training program can offer in a comprehensive way. So that they can be equipped to discern what skills are affective under what circumstances, depending upon their visual acuity or their level of activity. Many of the skills we are talking about take time to learn. I don’t recommend waiting until you lose enough vision where you would be thinking about using a cane or learning Braille, because that would be a lot of time wasted, and it takes a lot of time to learn and master these skills. So the short answer is, when people are presented with a cafeteria approach to rehabilitation, they may not know the full benefit of what those skills can offer them. They may not feel that they are up to the challenge to learn those skills, so it would take some time to be among confident instructors and other peers who have mastered those techniques, to begin to have the confidence and to begin to feel like those skills can belong to them, that independence can really belong to them.

So just taking a look at “I want a little bit of this and a little bit of that later,” what you can have is people returning to training over and over again. I’ve seen that, and it’s a little bit sad, in that sometimes I think they could’ve gotten a full meal all at once in a one-stop, comprehensive, few-months-out-of-their-life period of time.

Dan: How do you explain how would you explain the resistance that you run into with people who say they don’t need rehabilitation

Maurice: It’s a very interesting challenge, Dan. People, you find that no matter what age, when they take up things they love, that they’re passionate about, it may be music, it may be cooking, it may be knitting, or it might be listening to books on tape, name it, they’ll take it on with a gusto. And if it involves learning a new technology to do it, it’s interesting that they’ll find a way to do it.

The reistance to learning these new skills is tied very much to confidence and to one’s self perception as going through this experience of losing vision, however gradually. So what we’re really dealing with is a person facing a challenge and thinking, “Am I up to it? Can I really do these things?”

And tied to this, also, is the very ubiquitous social stigma of blindness. Call it whatever you want. I use the term blind very generically in order to demystify or try to bring it into common parlance so that it’s not a dirty word. It’s that social stigma. That’s the resistance. No one wants to be perceived as less or somewhat less intelligent, or slower, or that you need to raise your voice when talking with someone with low vision, because of all these misperceptions and public misunderstandings about blindness.

When we’re losing vision, we’re part of the public. Those are the things that we think about, so being blind is something we want to hide and resist. So learning new skills like putting a cane in your hand or using adaptive techniques, oh my gosh, that kind of makes me one of those, and I don’t want to give in to that demon. But if we can get past it and help support one another in a positive atmosphere, again with lots of other blind role models with various visual acuities, whether it’s macular degeneration or retinitis pigmentosa, or whatever it is, but seeing what other people are doing and wanting to be part of that is part of the process of getting over that resistance. It can happen. It’s just a matter of time and how one can process that and get over the sometimes very paralyzing fear and grief and all those things that are associated with newly acquired vision loss.

Dan: How important is patient education and self-determination in the success of a person’s low vision rehabilitation?

Maurice: That’s an excellent question, Dan, because it’s critical. Information is key to everything. We want to be, in our society, educated consumers, right? Going back to the previous question about traditional low vision rehabilitation models or the model to which I subscribe, I have an opinion about that. Others have opinions about traditional low vision rehabilitation, but what really matters is the person who’s going to be a consumer of that training.

And so I recommend that people don’t just come by and see us and see what we do, but that they go next door, or to the next state, or across the country and see what other people are doing so that they can make an informed decision. It’s critical to educate ourselves as much as possible about rehabilitation paradigms and models, as well as the research behind our condition, so that we can understand better about what we are seeing or not seeing. It’s critical and should always be encouraged.

Dan: One of the issues we brought up earlier was that some people wait too long. They come in for rehabilitation or they are expected to come in when they have a problem. You called it the cafeteria approach. Unfortunately, that isn’t always a practical situation. Another problem we have with obtaining knowledge and training in rehabilitation is the factor of distance and time. Is there a low vision rehabilitation clinic or agency within a reasonable amount of distance or time from our homes? And how motivated are we to make that effort, especially in the beginning when we are not that familiar with it? Which brings me to our Self Help Guide to Low Vision Skills. Would you like to say a few words about this approach?

Maurice: Dan, I did read the guide, and we’ve talked about it over the phone. One has to appreciate the obvious love and effort you’ve put into this document. And if we can make this available to others, they may want to add to it as well, It’s a very useful tool. Somebody can sit at home and read this on their computer or have someone read this to them, whatever, and go down the list, and it might really enlighten them to seeing the many activities that they are not doing anymore that they could be doing. It would inspire people to look into ways that it could be done. I do think it’s a very useful tool.

One of the things I’m reminded of is that I used to run a program that the NFB launched involving over 300 newspapers being made available for free to anyone who wants access to them. That’s an example of the kind of resources that you include in that guide, which is exciting. It’s a dynamic list. It’s always changing, and hopefully, it will give people some ideas.

And when you talk about social activities like dancing or going out to dinner, people don’t do these things anymore. They won’t go to restaurants for Valentine’s Day anymore, because it’s dark. And they don’t want to be embarrassed, because they can’t see their food. So I just want people, whatever it takes for them to bring this to light, to make the phone calls and visit an agency or group or low vision clinic that can help show people the possibilities. Contact us to see how you can do this or do that, and it’s a wonderful discussion to have.

Keep up the great work with it, Dan. I’ll continue to follow it. I hope other people on this forum will add things that they have learned can be done, and it could be a very lively and dynamic piece of work.

Dan: I appreciate your positive thoughts on that, and I hope you not only follow it, but that you help lead the way with this guide and become a major part of it, because it is a living document that’s going to continue to change. It’s totally free to use, and every other organization can take it and expand upon it. That’s what it’s out there for.

Maurice: I really do want to thank you very sincerely, as well as the people who’ll be listening in on this now and later on, for welcoming me so warmly to what I feel is another branch on our family tree. I do feel like it’s a community where we should be open and discuss anything that comes to mind. It’s stimulating to me, it’s exciting to me, and the message, I hope, is that the people who are beginning to see changes in their vision will pursue all the research they can. But know that life doesn’t need to end or even diminish. There is no substitute for 20/20 vision, but there are ways you may not expect that might be better. Keep that in mind, consider it, and let’s talk more about it. I do thank you, and I’ll be looking for news on the website and our further correspondence.

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