Announcer:
Welcome to the Nation's Blind Podcast presented by the National Federation of the Blind, the transformative membership and advocacy organization of Blind Americans. Live the life you want.
Anil Lewis:
Hey, hey, welcome to the Nation's Blind Podcast. This is Anil Lewis, and unfortunately we're not joined by my traditional co-host, Melissa Riccobono, but we do have our best stand in co-host ever, Mr. Christopher Danielsen. Hey, Chris.
Chris Danielsen:
Hey, Anil. You're so kind. Thank you for that. It's always a pleasure to be with you and I'm excited about today's podcast. We're really going to dig into some deep philosophy in the federation.
Anil Lewis:
Yeah, definitely some fundamentals around what we believe as an organization. It really was interesting. The whole debate around this particular topic manifested itself through two resolutions at our national convention, and if you're not aware of what we're talking about, we had two resolutions related to the terminology of using blind, low vision and visually impaired. So that's what we're going to kind of parse out today.
Chris Danielsen:
Absolutely. And we have a fantastic person with us to help us parse it out as well as we have some interviews that we also did with two other people, and we have some social media feedback from our audience. So this is really going to be a thoroughly well-rounded discussion, I think.
Anil Lewis:
Yeah, sounds like it's chucked full. So Chris, do blind, low vision, visually impaired, a combination of all three, none of the above?
Chris Danielsen:
So I've always done blind. It never really occurred to me to do anything else because I was totally blind since birth.
Anil Lewis:
Interesting.
Chris Danielsen:
Yeah. And nobody ever said to me that I was anything else but blind, so I kind of went with that, but I was aware that other people around me didn't necessarily identify that way, particularly as I got older and I would go to programs at the South Carolina Commission for the Blind and where I was growing up and different things. And I did notice then that there were an awful lot of people that weren't like me, that were not totally blind and they didn't necessarily identify as blind. And I definitely noticed a whole what we call the hierarchy of sight. As a matter of fact, I remember being very frustrated when I was doing, I guess what we would call it now is pre-Employment Transition Services in a program at the South Carolina Commission for the Blind. And one of the things that kept happening was that I couldn't get what was called a mobility clearance, which was the ability to go off campus by myself. I always had to be with a cane travel instructor. I noticed that the partially sighted/visually impaired people had a lot easier time, high partial had a lot easier time getting those mobility clearances.
Anil Lewis:
Yeah, I think what you just said is really core, especially when you're talking about people's perception of blindness. People think that total blindness is the term when you use blind, that's what they're referring to rather than the federation's perspective that anyone who doesn't have that 2020 vision is actually considered, in our philosophy and understanding, blind because the same discrimination, stereotypes are associated regardless of your degree of vision. Mine was kind of more progressive. I became blind when I was 25 and I was still able to see quite a bit because of the rp. But in the beginning, the term I referred to first and foremost was legally blind because that was the terminology I was infused with because one of the first things I had to do was apply for social security benefits. So that's the whole term within the social security space. And then when I started working with individuals providing me services, it seemed like most of the professionals in the traditional spaces really preferred the visually impaired kind of term, which I just adopted it because that's what was pervasive and what was going on.
It wasn't until I actually found the federation that I even really start considering my identity, right. As a blind person. So I think that my perception was more kind of an evolution and my understanding and belief system that had me start using the words, but we could sit here and talk about it all day. But I have another individual, as you already alluded to that we're going to bring into this conversation. She's a former national board member. She's now the chairperson of the development of our Minnesota Center for the Blind out of Oregon. Ms. Carla McQuillan. Hi Carla.
Carla McQuillan:
Hey, how's it going?
Anil Lewis:
Oh, it's going great. Carla, are you blind, low vision or visually impaired?
Carla McQuillan:
I am now blind and proud to say it, but when I was a kid, so I have stargardt's and I lost my vision, well, I went legally blind when I was about ten. And at the time I'm with you Anil, I said legally blind, which was always followed by, I have no central vision. I have peripheral vision,
so my mobility is not so bad, but I can't read print. And then I came to the National Federation of the Blind as a scholarship winner in the state of Illinois, and I was twenty-eight-years-old and it occurred to me that I was fooling myself. I was trying, and I really observed, like you said, the hierarchy of sight, that somehow if you had some vision, you were better off than someone who did not. And I became very aware that that was pretty arrogant of me to set myself apart because, and as you know, your vision deteriorates over time. It's not stable. And so I actually, adopting the blindness word has made it easier for me. I don't go through a lot of explanation about how I see unless somebody asks me. It's I'm blind and that's the story.
Anil Lewis:
But what's really been interesting for me in this kind of evolution is in identifying how the words are used really makes a significant difference in the way that people treat us.
Carla McQuillan:
Yes
Anil Lewis:
It's true though that blindness comes with its own preconceived notions and stereotypes, but I think as an organization we continue to change that. It always reminds me of back in the seventies when we started saying bad meaning good, not bad, meaning bad. So redefining the definition of the word. So I love what we've done with blindness, but I still think that between low vision and visually impaired, it's such a pervasive use of the VI in the professional space especially. You got teachers of the visually impaired, you have VI specialists, you have vision specialists, all those kind of vision centric. And realistically, I think that that particular terminology tends to set us back because it supports that preconceived perception that blind people are broken sighted people, and that vision is most important rather than focusing on acquiring a skillset that allows you to be independent as a blind person. What do you think, Chris?
Chris Danielsen:
Well, to go back to what our resolutions have said, and we passed two in 2024, but they hark back to a resolution that we passed in 1993, and we talk about how, and I'm quoting here, "Visually impaired implies a sense of deficiency and inferiority and perpetuates the incorrect notion that people who have lost part or all of their eyesight are automatically less capable or limited in their abilities as compared to people with normal eyesight," because it has that word, "impaired" in there.
Now, my typical smart Alec thing was always to say to people, don't call me visually impaired. I have no vision. There's nothing to be impaired. It's gone. It's not there. I'm a blind person. But I mean, other people don't have that, and I should say that everybody goes on their own individual journey. Carla, you were just saying it took you until you were twenty- eight-years-old to have this. And one of our other guests that we're going to talk to later mentions that all of their life, they didn't use the word until their significant other pointed out to them, why don't you use blind? But at the same time, when we take these positions as an organization, of course we're not trying to undermine anybody's personal journey. Everybody has to come to these realizations. But another thing that we pointed out in the resolution too is there's parallels. We talked about other minorities such as the deaf community have successfully advocated for the use of terms like deaf or hard of hearing in place of deaf and hearing impaired, recognizing the value of moving away from terminology that includes the word impaired.
Anil Lewis:
That's a whole disability community identity kind of evolution. And I think we're kind of on the tail end of that particular progression. The other piece of the resolutions I like is we did have two, and people think that they're the same, but they're really not. One is really about how media really defines us or characterizes us. And I think that's important because so many people don't have, well, not a whole lot of people get an opportunity to really meet a successful independent blind person, but they do see blindness portrayed in the media and that defines how they are going to perceive blindness. So if we are more proactive in making sure that media really demonstrates our capacity and really reflects our true capability, then we're probably going to be better able to interact with those individuals in society that frame their perspective around blindness based on the media perceptions. And then the other resolution, it's really more around the core of why we as an organization are authentically and unafraid of using the word blind.
Carla McQuillan:
If I can just jump in, one of the things that I have observed over the years is because I do have some vision that when I tell people I'm blind, they're like "Oh, like, oh my gosh, you're so amazing." And my response after I cringe a little bit is, "Oh no, I have totally blind friends who are way more competent travelers and in terms of alternative techniques of blindness because they learned it earlier than I did." I was thirty-two-years-old before I went to a training center and worked under learning shades with no visual output or sense at all. And I do, I kind of stop and take a deep breath and go, "You just don't understand because you really don't know a competent blind person."
Anil Lewis:
Yeah, it's not the degree of vision that we have. It's the skillset, the ability, and even more so I think our perspective as blind people. So I think that's another reason that this is so important. Once you really understand that blindness is a characteristic, as we say in the federation, then you can focus on mastering those alternative skills to make sure regardless of what your visual acuity is, that you can be independent and be competitive and really fully participate in society. We had some feedback from some people from the social media space too. So lots of different perspectives on this.
Chris Danielsen:
Well, and I'll read some of those in a second, but I did just want to add to what Carla is talking about, and you were just talking about that, I assumed for the longest time until I got involved with the federation all the time that I was growing up totally blind, I just assumed that blind or visually impaired people that I knew just could do things more easily because they had more eyesight. And it was until I went to a federation convention and saw like Carla refers to other totally blind people that were, or I didn't even know whether they were totally blind or not, but they were totally embracing their blindness and they were traveling with their white canes and doing a lot of other things much more efficiently than I was. And I started to think, oh, it really is about the skills. It's about how you absorb the skills and learn to do things non-visually. And then I really absorbed that when I went to my own training center.
Carla McQuillan:
Well, just real quick, and I'll tell you, I have just enough vision to get me in trouble, is what I always tell people. And it's true because it's when I stop relying on my techniques and skills of blindness that I do stupid stuff. I think there's a doorway and it's a glass wall.
Anil Lewis:
You see a shadow and you're thinking it's an obstacle.
Carla McQuillan:
Right, exactly.
Anil Lewis:
You don't see the contrast in the steps, so next thing you're about to slip and fall.
Chris Danielsen:
Yeah. It's so interesting. And by the way, one of our resolutions does talk about the term low vision, and we're going to talk about that a little bit too because, and whether that's a little bit better term to the extent a term other than blind has to be used at all, whether that's a little bit better, but to some of these social media responses about when people began to identify themselves as blind. So I have to shout out to this person because they're from my home state of South Carolina. So Laurel from South Carolina says, "I became most comfortable with the word blind as an adult. When I was very small and wanted to examine things on store shelves, my mom would say to those around us, "She doesn't see." Then in school, my itinerant teachers and O&M instructor corrected me every time I used the word blind. Deep inside my soul, I never really understood why blind was considered such a negative word. The older I get, the more I embrace my blindness as a major portion of my identity and my unique perspective on life, giving myself permission to be proud of my blindness continues to be extremely liberating for me personally."
Anil Lewis:
Nice. And that's one of many examples of how the institutions themselves already get us institutionalized around using the term visually impaired and also not only just using that term, but also being more reluctant to use the word blind.
Announcer:
Right. Leslie says, "For me, it was a process. I used to call myself visually impaired, even though I've been totally blind since birth." Wow, that's interesting. Yeah. "It wasn't until I got seriously involved with the NFB that I changed my tune. Blind is definitely one syllable and easier to say." That goes back to your story too, Carla.
Carla McQuillan:
We're conservation.
Chris Danielsen:
About how you don't have to tell this whole story to explain how blind you are.
Leslie continues, "Throughout time, I began to see it as a characteristic and now it's part of who I am, although it does not define me, it's just part of many parts." Now, Allison from Arizona, I think I know who this is, says, "I had partial sight for most of my life, but I grew up with parents who referred to me as legally blind. So it was a fairly easy transition for me to just start saying blind. Once I became a young adult and met people who use the term. I struggle a little bit with my own kids though. They are very technically low vision, it feels a little dishonest somehow to refer to my kids as blind when they truly do so much visually without much effort or strain either. Though they are also technically not sighted either. They are in that middle ground between sighted and legally blind, which probably counts as visually impaired.
I don't like the term visually impaired at all. It just makes me cringe because the impairment part in my mind sounds like a bad thing. It focuses on the deficit and implies that you are a broken visual person. So I often settle on the term low vision. That said, I use the word blind with my girls as often as I can so that they are used to it. I often would refer to them as partially blind or a little bit blind when they were younger. This emphasizes the importance of de-stigmatizing the blind while also acknowledging their reality, which is still visual using the..." and she goes on.
Anil Lewis:
I think that's a great example of why low vision is really a good term in that particular space because I know that when I started losing my vision before it got so bad that I couldn't really see it all, I always used to get into that thing where I would do some things visually and then everybody would question whether, "Oh, you're not really blind." So rather than even getting into that space, I would start using the term low vision. But again, I think that's also, as you alluded to earlier, Chris, a reason that we should move away from visually impaired because her kids, if they were referred to in that space as visually impaired, it would've spoke to some presumed deficiency as opposed to low vision, meaning they had some limited vision that they were able to use.
Chris Danielsen:
Right. Well, we've talked to some other folks about this as well in addition to the three of us. So I'll let you introduce our first interview, Anil.
Anil Lewis:
Okay. Well, I don't know if it's necessary an interview, but we did capture the comments and the story of our manager, of our independence market, Mr. Sean Seward. So let's see what Sean has to say.
Sean Seward:
I've been blind since I was two-years-old. I had what is called retinoblastoma, which is cancer of the retina. So as far as back as I can remember, I have always been totally blind. I have two prosthetic eyes. Anyone who knows anything about cancer, the way that you treat it is either with chemo or to remove the cancerous part of the body. And so as a result, I have two prosthetic eyes. Born and raised in Baltimore City, went to public schools and also I graduated from Morgan State University. Proud, graduated in 2006. I have two children as well. So I'm a proud blind father, very active in my children's lives. When I was younger, I had low self-esteem and some of it was probably centered around being blind. I would say the pivotal moment for me was in high school. I had an English teacher in 10th grade who he used to make me read.
I didn't like to read as a kid because I felt like I read slowly. I felt like I read too slow reading Braille, so he would force me to read in front of my class. And then my biological mom died when I was 13, so that was a struggle for me as well when I was young. So one of the ways that my teacher pushed me was he came to me one day, he told me to stay after school, and he said, I want you to get up tomorrow and talk to the class about what it's like being blind. And I said, well, what do you mean? And he said, just get up and start talking and everything else will come naturally. And so it became a thing. I did it in front of my class and they had me do it in front of other classes.
I did it when I went to college, and each time I did that, it gradually became easier for me to talk about being blind, for me to identify as being blind. And so that was probably the best thing for me. Now I walk in my journey and I'm completely comfortable and okay with it. And so I still am friends with my teacher today, so I still do go back and talk to his students sometimes about being blind. Obviously I have a lot different experiences now that I'm able to share with those students that for a sighted person seemingly is amazing, but to me it's just like I'm doing what I'm supposed to do and I'm not allowing the blindness to shape what I want my journey to ultimately turn out to be. It was interesting because I was always quiet, maybe a lot of people didn't know how to take me. When I was in school and I started doing those presentations, it definitely gained me a lot of popularity and it allowed people to kind of get a glimpse into the person who always just sat in the front of the class who was always quiet, never participated unless I was forced to.
And so then it became a thing where people would see me out and about, "Oh, you talked to my class about being blind. I'm such and such," and it made people a lot more willing to speak to me, which kind of forced me out of my shell as well, which forced me to have to speak to them and just kind of put on a smile, like "Oh yeah." I probably didn't remember, but I knew what they were talking about because I had spoken to so many different classes. In high school, we called it a resource center housed in the school where the teachers would send the worksheets and dittos down to the resource center ahead of time. So oftentimes when I went to class, my ditto was sitting on my desk or my chair right along with everyone else's ditto. We had Braille books, a lot of the Braille books they already had ahead of time.
So I was able to participate there. The challenge really for me became in college when I went to college, because I was one of the first blind students in a long time, so the way that they did it then was more so they would choose a student that was in my class who was already taking notes, give them carbon copy paper, and then they hired students in the learning service center at Morgan to record, the notes on cassette tape (laughs) back then I would listen to or not listen to the notes that the students took for me. So it was semi effective. One of the things that worked for me honestly is that I have a memory like an elephant. And so I was able to follow with the reviews that we did in class, and I was able to kind of do well with the exams that we had to take in college.
In 2013 started, I started in the Blind Enterprise Program (BEP) of Maryland. I was in business for myself for eight years before covid. And when covid happened, of course everything changed as a result of that. My store was one of the stores that closed down. Every year in the BEP program, we do a conference where we kind of get together, talk about what we want to do, what we want to see within the program, and John Pare, who is my supervisor here at the NFB, came to recruit. At that time it was like, okay, well I want to go back into business. I planned to go back into business, but I still had two children. I still have responsibilities that I had to take care of, and so I needed something to kind of bridge the gap. I never thought that it was never going to be the same again.
I thought that eventually I would be able to go back into business. And so I came, I interviewed with John and for me, this was kind of the closest thing to what I was already doing. Essentially, I'm running a business like I ran my business, just for somebody else, so it gives me great satisfaction working here. I still get to care for and cater to people, which is a passion for me. And then it hits in a different way because I get to connect with people, other folks who are blind. Give them a different level of belief because sometimes we get calls from people who don't really recognize because they just went blind months ago or a few years ago, they feel like life is over. And then they may hear my JAWS in the background or certain questions that are asked, they're able to kind of pick up on, "Oh, you're blind as well and you're still working."
So that gives me satisfaction because I love for people to kind of know that there're still hope, even though life is different for you today than it was yesterday. When I think about how advanced technology is today, it really is truly amazing. I was talking with some friends recently about when we first learned how to text accessibly, it was really game changing for me because I have three brothers and a sister and they were all able to kind of text each other and communicate with each other with cell phones. As we became young adults, cell phones really became obtainable. And so I had a cell phone, but it didn't talk. And then someone mentioned to me about, "Oh, you can get a cell phone. It has speech software on it and you can text and you can search the internet." And I'm like, "What do you mean?"
And so to finally get that device in my hand and to be able to have access, to be able to search the internet, to be able to send the text message to my siblings, and then when you think about where we are today, where our house can talk to us, we can tell the house to turn the lights on and off and set my oven or my microwave. It is amazing to think about where we are today versus where we were yesterday. And it's one of the reasons why I'm so passionate about making sure that, because I think one of the biggest things for me as a kid, I just didn't have the information. I just didn't know what was out there. And so every day when I come into work and I'm taking phone calls from customers, I'm thinking about, okay, what information as I'm listening to this customer can I give them that's going to allow them to know that, hey, you can still live your life just how you were living it.
It just looks a little bit different than it did before you lost your sight. One of the things that I've really been on a crusade to do for the market and what I love about the market is so obviously the canes, because canes are important, we know that blind people need canes in order for them to be able to move about independently. We have several different types of canes. We have straight canes, we have folding canes, we have telescoping canes, and it is all preferential. It is all based off of what is most comfortable for you. We also offer the free white cane program and the free slate and stylus program. We want to make sure that we get canes in people's hands and that blind people have instruments that they can write with and they can be able to communicate independently. The games, all of us, especially in this holiday season, all of us have family.
And I just remember as a young kid, I would Braille my own playing cards myself. I remember when I was younger, I tried to create my own version of a board game. I just took a large piece of paper and I used pennies as the people to be able to move around the board. I took just like a regular deck of bicycle cards and put braille on those. My family are big spades players, so every family event is spades. And so I wanted to learn. I wanted to be a part of that. And so I would go to whatever store, grab a deck of cards and have someone put them in order for me, and I would use my Brailler to put the braille onto the cards. And then I have played with trying to figure out, okay, well is there a game, are there games that I can make accessible?
So maybe I know I remember taking Connect Four and putting a bump dot on all the black tokens, and that way I could tell the difference between, I think they're red and black, but I could distinguish between the two. So just little things like that, trying to find innovative ways to be able to be included with my siblings. I remember with Scattergories, I'm not sure if people know about that game, but I had someone read all the cards. They're numbered from either one to twelve or one to sixteen, and they have twelve different things that you have to do. So you roll the letter and the card, it may be list five, and on the card it may say the letter may be S, and it may say, "Singing groups that start with the letter S and foods that start with the letter S." And it's just a whole list of different things that you would go down the list and whoever had the most at the end, they would win that game. So I remember Brailleing those out. I've done my own bingo. So just little things like that to try to feel included with my family being, well, up until recently, I was the only blind person in my family, so I had to try to become innovative in that way.
But not everybody has that ability to be able to do that. And so I want to make sure that when the next blind person is going to their family event, they're able to take a deck of UNO cards with them. They're able to take a deck of playing cards with them or Connect Four is something that I play with my children. I'm always trying to find ways to bring more games in so that blind people can feel included when they go to these family gatherings or when they want to play with their children. I had a customer come in and she was very, she cried. She literally cried because she was like, I just didn't know that I could still play games. I can still participate with my family. And so those were the things that I would highlight. A couple of other things that I would highlight as well is cooking.
We have Brailled measuring spoons and measuring cups, talking thermometers and kitchen thermometers and kitchen scales, bathroom scales, blood pressure monitors, all things that you would use on a day-to-day basis in order for you to be able to still monitor the things that you need to monitor independently, a lot of people have high blood pressure, diabetes, we have talking blood glucose monitors as well. And so all of these things are available to you at the Independence Market. You can find our NFB brochures here. We also have NFB merch, so you can get your NFB polos and NFB jackets here. But it is a wide variety of products here that allows blind people to be included in the family game night or if you still want to be able to cook for your family on a day-to-day basis, or even if you just want to kind of personally just keep up with what you have going on from a health perspective.
You can call us here at the Independence Market over the phone right now. The telephone number here is 410-659-9314. Again, it's 410-659-9314, extension 2216. We can also be reached by email at [email protected]. And again, that's [email protected]. And right now, those are the most effective ways to be able to reach out to us. We do have a catalog that is digitally available on the NFB website underneath the Independence Market. And once you click on the Independence Market, you'll see the 2023 Independence Market catalog, which you can download. It is accessible. So a blind person would be able to download that from to their laptop or from their phone as well and browse the items that we have available in the market.
Anil Lewis:
See, he also had to throw in a little shameless plug for the market. Good job, Sean. Glad you were able to share with us a very interesting perception. Again, some of it's fairly individual, but there's really more consensus than most people would think.
Chris Danielsen:
Absolutely. It's so interesting to hear everybody's perspectives and how they approach this in different ways, but yet often arrive in the same place. Now, I did do an interview, maybe that's why I said that. I did actually do an interview with one of our board members, Grace Pires from Rhode Island. And Grace has a really interesting story because one of the questions that we asked was whether it was a process or whether there was a moment when you suddenly felt comfortable identifying as blind. And that may be a less common experience, but let's hear what Grace says about it. Hello everybody. It is Chris Danielson sometime co-host of the podcast. I have the pleasure of being here with one of the members of our board of directors, Grace Pires. How are you doing today, Grace?
Grace Pires:
Pretty good.
Chris Danielsen:
Good. Glad to hear it. Ready for the holidays and all that craziness.
Grace Pires:
I am working on it.
Chris Danielsen:
(Laughs) Aren't we all. So let's start by talking about how long you've had issues with your eyesight and just so that people have that context and then we can go into how you thought about it at different times.
Grace Pires:
So I was born blind. I only have light perception. I was born in Portugal and my parents came here when I was ten, but I remember being in Portugal and obviously I knew that it wasn't like the other kids, I couldn't see like the other kids. And so the word "blind," it's "cega" in Portuguese, and it wasn't, my family didn't really use it. I remember thinking about it and my aunt actually, I remember her saying, "Well, you can only see a little," as a child. I was probably like, I don't know, five or six, seven, something like that. And looking back now as an adult, I'm like, no, I really couldn't see much of anything other than light and dark. So it seemed that we didn't use that word. I've never heard my parents use it. They'd say "can't see," but they've never actually used the word.
Chris Danielsen:
Right. And of course this was in Portuguese, so I assume there wasn't really a term that would be analogous to "visually impaired" in Portuguese. Was there?
Grace Pires:
Well, I suppose the "can see a little," maybe that's what it is. I'm not sure. I'm thinking about the translation. I'm not sure if it translates "visually impaired" to Portuguese. I'm not sure how I would translate it at this point, but that's kind of how I took it as being like just can't see. I can only see a little. That's how I'm translating it from what they used to say.
Chris Danielsen:
Right. And at that time, you said you came to the US when you were ten. So were you going to school in Portugal? And what kind of school was it and what, if any alternative techniques were you using at that time?
Grace Pires:
So when I came here, I really hadn't learned any alternative techniques because there was a school for the blind, but it was not, so I lived in Azores, so it was one of the small islands, and so there was no school for the blind there. We'd have to go to the next island. And I tried it for a couple of weeks and it was a residential school and I wasn't having it. I did not want to stay there. So my parents decided to come here because I could be mainstream and still live at home and get the skills that I needed. So I pretty much came here at age ten to learn to read the language, Braille, everything.
Chris Danielsen:
So that was basically the reason that your family came to the United States?
Grace Pires:
Yes.
Chris Danielsen:
Well, it's great that you had that opportunity. And once you came to the United States, what happened?
Grace Pires:
Then people said I was blind, and so that was fine. I was okay with the word "blind." I didn't always use it. When I described myself to other people, I used mostly "visually impaired." I am not really sure why I would use that word, not blind. It depends. If I was talking to a blind person, I was fine with telling them I was blind. But if I was on the phone with somebody who didn't know me, I tended to describe myself until I was an adult as visually impaired.
Chris Danielsen:
Interesting, interesting. And when did you start to question that or start to think about that maybe "visually impaired" wasn't a description that you wanted to use?
Grace Pires:
So I did it primarily, I think it wasn't for me so much as for other people, I think I didn't want to distract from whatever I was discussing on the phone with people. So I figured if I told them I was blind, they'd feel bad and be stuck on it and we couldn't move forward. So I would use "visually impaired." And then one day my husband, I was on the phone and I get off the phone and he goes, why do you tell people you're visually impaired? There's not much to be impaired. You're blind. I said, I don't know. It was not a conscious thing. So I started thinking about it and then intentionally I started to use the word "blind." I think though by that time I was involved with our organization with the NFB, and I feel like being part of the National Federation of the Blind, it helped me. It was like a light went on. I'm like, why am I doing this? That makes no sense. It's not accurate. So I should describe myself the way I am who I am. And so that's when I started to use the word blind.
Chris Danielsen:
How long had you been in the Federation at that point?
Grace Pires:
Probably a couple of years. I remember that this happened, I can't remember exactly when, but probably a couple of years.
Chris Danielsen:
Okay. And when did you start to get involved in the federation? Did you start as an adult or as a student or?
Grace Pires:
No, I was an adult. It was in 2000 when I started.
Chris Danielsen:
Okay. Excellent. So that's really interesting, so going back then and talking about it a little bit, one of the reasons that people use "visually impaired" is because of others' perceptions. And you kind of said that you think that's what was going on with you. Can you elaborate on that?
Grace Pires:
So they wouldn't feel bad for me. I think that was the reason. Growing up in Portugal, a lot of times I'd be walking down the street and people would make comments that I was blind. And that really bothered me. I could hear them like, "Oh, that girl is blind." And it really, as a child, I remember being upset by it. And I don't know if it was the word that bothered me or was it they were talking behind my back. I was a kid. I don't know. I just know that it was upsetting when people were talking about me behind and I could hear them. So I think it got in my head that it was negative to be blind. So probably that was why I was not telling people that.
Chris Danielsen:
And was that because of people's tone of voice or was it just, or did you hear people say things like, "Oh, that poor girl," or things like that? Or was it a combination?
Grace Pires:
It was the tone of voice. They would say, "Poor, poor girl, she's so pretty, but she's blind." So obviously it was telling me that, okay, well, I experienced a lot of that in different events in the Portuguese culture where they would say that. Sometimes they would even just stand in there and just talk about me like I wasn't there to my parents, and say, (In an apologetic tone) "Oh," so that bothered me. Yes, and there was the pity tone of voice.
Chris Danielsen:
Thinking back on it, and obviously hindsight is more, hindsight is 2020, as they say. Not that we have to use visual metaphors, but just looking back on it, you feel like maybe you thought people would feel less sorry for you or perceive you better or if you use "visually impaired?"
Grace Pires:
Yes, I believe that's why I was doing what I was doing. But I think the fact that I met a lot of successful blind role models. So when my husband pointed out what I was doing, it wasn't upsetting. It was more like, "Yeah, why am I doing this?" I was startled. I'm glad he said what he said, because then I started to think about it and I'm like, "No, I'm going to tell people I'm blind because that's who I am, and I'm good with it." I like who I am, and there's nothing to be embarrassed or shamed about it.
Chris Danielsen:
Exactly. So it's interesting because with some people it's a process coming to that realization, but it sounds more like to you, it was this moment when your husband finally sort of lovingly, I'm sure, but kind of called you out and said, "Why are you calling yourself visually impaired?"
Grace Pires:
Right, and he knew that I've been kind of working on me and accepting blindness. And like I said, so I think that's why he was like, "Why are you saying?" and he's very logical. So it was not to be mean or anything like that. Like you said, it was more like, well, this isn't logical. It's not, we cannot, you are not visually impaired. So I was like, yeah, we kind of talked about it a little bit that day. And then I started to intentionally use the word "blind" because that's accurate.
Chris Danielsen:
By your account of it he says the same thing that I tell people all the time, which is like, "Look, don't call me visually impaired. I have no vision to be impaired. It's not impaired. It's just not there. I'm a blind person."
Grace Pires:
I believe those were his exact words.
Chris Danielsen:
Why do you think the media tend to use the term "visually impaired?" I
Grace Pires:
Think because most people, society fears blindness. To them it's unconceivable that blind people can do things independently. So that's why the media, it's a negative connotation being blind. So that's why they use "visually impaired."
Chris Danielsen:
That's great. So in the federation we talk about having a functional definition of blindness. What does that mean to you and why do you think it's important?
Grace Pires:
I think what it means to me is if you need an accommodation to do things, to do visual tasks, if you need to do with an alternative technique, then you're blind. For me, I understand that there is a spectrum of blindness. It's not like no vision at all, but if you need an alternative technique, like for reading or any other visual tasks that people do visually, then you're blind. That's how I see it.
Chris Danielsen:
And that's kind of all the way that we've all talked about it. Do you feel like that is a more inclusive definition of blindness? In other words, do you think it's better than say the legal definition of blindness?
Grace Pires:
Yes. I think our definition is a more inclusive definition because there are people who, I also work in the blindness field and I know that there are people who are not meeting the legal definition of blindness, and they could be still struggling depending on the kind of vision loss they have. So this way, anybody who needs an accommodation, I think our term is more inclusive. It doesn't leave anyone out. This way, other people who are struggling, then I think they feel left out because they're still struggling. People are saying they're not, so they're not qualifying for blindness. So yeah, they feel like they are.
Chris Danielsen:
And one of the things I'm learning that I didn't even realize is sometimes you can be blind and it can actually not be a problem with your eyes at all. It actually can be caused by other things. There's an article, there was an article in the November Braille Monitor about cortical visual impairment, which is what they call it. I would maybe call it cortical blindness, but I think that's another piece of it is the medical model tends to use "visually impaired" more as well, but it cannot even be an eye problem. And if you read Dr. Jernigan's article about his original definition of blindness, he talks about that he knew a person who could see perfectly fine in certain situations, but their eyes were so sensitive to light that they couldn't keep them open without extreme pain in situations where there was a lot of light. And so for all practical purposes, they were a blind person even though there was nothing actually wrong with their eyes, except that their eyes didn't react to light well.
Grace Pires:
That's right. And I actually do work with some people who have the CVI, the cortical visual impairment, and that's what it is. It's the way the brain processes the images. It doesn't process them properly. So they're having difficulty functioning as a sighted person. So for our purposes, the definition we have would include them as well, because it's not their eyes, it's their brain. So they're still not seeing, so they still need the accommodation, the techniques, so therefore they're still included.
Chris Danielsen:
In your work, do you try to get people to be more comfortable with the idea that they're blind or is that something that you feel like you're discouraged from doing? And if it's politically too sensitive for you to answer this question, it's fine. I just thought I'd throw it out there.
Grace Pires:
I think it depends on the situation and the person. There are some people that we will talk about it more than others, depends on how receptive they are to talk about the journey they're on. I always try to tell them it's a journey that it takes time to process their loss. Sometimes I have people who just lost their vision within less than a year, so they're still working through all those issues. There are people, I also have people that have been blind all their lives are visually impaired depending on how they identify themselves. So it depends on the situation. No one has discouraged me from discussing the process because it just hasn't come up as an issue with our agency. So just depending on the situation, I'll share my experience and if I feel like they're struggling with moving on to with their lives.
Chris Danielsen:
That's great. That's great. And I think it's really important to emphasize that although we have a preference in the National Federation of the Blind about the terminology we use, everybody's on their own individual journey. And of course, we're not trying to make people change their language and lesson until they're comfortable with it.
Grace Pires:
Yeah, I totally agree. I feel like I don't tell them how they should identify themselves. I kind of listen to what they're saying and use whatever terms is more comfortable for them, because like I said, it is a journey and I wouldn't want people telling me how I should identify, so I kind of feel like I need to take people where they are. So if that's what they need to use, use "visually impaired" or "low vision." I kind of like the "low vision" term actually thinking about it. To me it feels less negative and it's not negative. Well, impairment is there's something wrong, a defect, which is kind of another that you've asked me earlier. You've asked me about how I would identify in Portuguese, how you translate impairment. I guess the word defect would be the literal translation to the Portuguese, of which sometimes I did have heard people say that we had a defect. Again, it's a negative word.
Chris Danielsen:
Yeah, exactly. It's emphasizing what you don't have. And to me, "low vision," while it's still saying that you don't have as much vision as some other people.
Grace Pires:
It's neutral. I think it's not saying, like you said, something that you are missing that you are deficient in. So to me, I think it's a much more kinder word.
Chris Danielsen:
Yeah, it's more neutral.
Grace Pires:
Yes. That's kind of how I feel. I feel like that's a neutral word. It's like, okay, I have low vision. Obviously I would not identify myself that way because inaccurate, and there's nothing wrong with the word blind. It's just I think for some people, especially if they're newly losing vision, I think they should identify how most feel comfortable. And that's how I treat my clients. And some of our members too. I mean, I know some of our members, they still say they're visually impaired. And I think to myself, "You don't have any vision, but okay," because that's how they choose to identify. So it's not up to me to, it's more important that they come on their own.
Chris Danielsen:
Well, Grace Pires, thank you so much for talking about this. It is so interesting that it's a different journey, and I especially appreciate your perspective because a lot of times it's so interesting to know how different cultures handle this too, and how in a lot of ways the low expectations are everywhere, but at the same time, every experience is different. So thank you so much for being open and vulnerable and sharing that with us.
Grace Pires:
Thank you. It was my pleasure to be here.
Chris Danielsen:
So that's Grace's perspective on some of these points. She has a really interesting story because she even came to from a different culture, lots of different perspectives, and it's so interesting how everybody's journey is different, but so many of us have found the liberation of identifying ourselves as a blind person.
Anil Lewis:
Yeah. I'm curious about something, we've talked about individuals and their evolution to identifying as blind and using the term "blind," etc. Now, Carla has operated Montessori schools for years, and I got to believe that in your interaction with the students there, your blindness becomes part of that whole discussion. Do they kind of organically or naturally refer to you as a blind person? How do the kids see you as they realize that you can't see?
Carla McQuillan:
It depends on their age. And one of the things when I was giving Montessori lessons is I needed to keep track. I would have kids getting numbers for me. Well, I had to keep track of what those were because I had to make sure they got the right one. So I brought my Brailler into the classroom and I started using the Brailler. Oh, let me tell you, the children were fascinated with that. And if I can just relay a little story. So I have two children, and they of course grew up with me being blind, and they each took on, Alison would start to read subtitles in movies and on television and video description and things like that. They just kind of filled their roles. And there was a time when my daughter, Alison was in Denver, an adult, and she was going to meet with one of our blind friends who was there on business, and she's meeting with her partner and she's running late. So she goes through this big description of what this guy looks like and finally gets to a point, his height, his hair is all, and then finally went, "Oh, and he's blind," because it didn't even occur to her that that would be the defining characteristic. And I appreciate that my children had an opportunity to grow up in the National Federation of the Blind and their attitudes are wonderful about blindness.
Anil Lewis:
And I agree. I'm glad that I came to the space where I identified as a blind person and used that term before I became a father, because I think that my son quickly grew up to understand that that was the many characteristics of his dad. Whereas if I would've been going around using "visually impaired," all those other kind of blindness pseudonyms, that he would've thought that that was more reflective of my capacity, and I think it would've made a difference in that whole father-son dynamic.
Carla McQuillan:
Nice.
Chris Danielsen
Yeah. That story you tell is so interesting too, Carla, because my sister and I were talking over Thanksgiving about this because she mentions to people from time to time that she has a brother, and she often doesn't mention that I'm blind. And then she'll say something like, so Chris took an Uber to the airport because he doesn't drive. And everybody's like, "Why doesn't he drive?" And then she tell, "Oh, well, Chris is blind." And people are often like, "Why didn't you say that before?" And she's like, "Because he's my brother. That's not the most important thing to me about him."
Anil Lewis:
Exactly.
Carla McQuillan
Absolutely.
Anil Lewis
And then interesting, because if she would've disclosed that from the beginning, her telling that story would've been received completely differently than them just assuming that you're just the average, just a brother with no disability. That's interesting how people really kind of tunnel vision focus on it once it becomes part of that conversation.
Chris Danielsen:
Right. And she's like, "I'm trying to tell you a story about my brother, and now you want to talk about his blindness," which isn't even, you triggered something else too, Carla, because I have to say, and we could do, and we have done other podcasts on this whole topic, but I think it's so interesting how your students reacted to the Braille writer. Because when I joined the Federation and I started hearing people, started really hearing about the argument, I guess, that Braille is stigmatizing and that Braille isolates blind students. I had the same experience in school. All my friends thought Braille was so cool. They wanted to learn it. They wanted to know more about it. I actually made some friends that way, and one of my friends and I got to the point where we could write notes to each other.
Anil Lewis
Uh oh, uh oh.
Chris Danielsen
Which of course was not what you're supposed to do.
Anil Lewis
Trouble (laughs).
Chris Danielsen
Yeah, yeah, exactly. But Eric and I would do that. So it's so funny. All the things that the way kids perceive things is just so interesting as compared to adults. And that's why Alison's point is so important too, because it's important to not let our kids, it's so much easier when our kids aren't exposed to the stigmatizing language, and really understand that blindness is okay. It's just a thing. It's just a characteristic.
Anil Lewis:
I want to introduce one aspect of this to this conversation before we close out. So we know in the National Federation of the Blind, we're not afraid of using the term "blind," and we've stressed that in those instances where some other deviation that we much prefer "blind" and "low vision" over "visually impaired." But in the discussion and some of the comments, we've heard many people come to this space being very comfortable with the term "visually impaired." Have you seen that in many instances, as we meet new people who don't know the federation who've become acclimated and identify more as visually impaired, do you think that we as an organization do a good job of trying to get individuals to evolve into this understanding that we promote?
Carla McQuillan:
I think we do. And I think over the years, we've softened the way that we approach that topic. Not to beat people up over it, but to just try to get them to understand why we believe the way we do and what our perspective is on that.
Anil Lewis:
Yeah, I would agree with you that we've softened it as we've gone. And I'll admit wholeheartedly that I'm one of the individuals that probably made it difficult, because when I did come to that understanding and ability to identify as a blind person, that was as one of the commenters said very liberating for me. So I was very zealous in talking about that liberation to the degree where I may have turned a lot of people off. And the hypocrisy of that, of course, is when I was comfortable with "legally blind" and "visually impaired," and people were telling me that I was equally resistant to come to terms of using blindness. So giving myself grace and giving others grace, I think is something that we have to evolve into as an organization, not taking away from those individuals that get that sense of freedom when they finally reach that space, but also making sure that organizationally we do it in a way that's respectful to others.
Chris Danielsen:
What's the old saying, Anil? There's nobody more zealous than a convert.
Anil Lewis
How about that?
Chris Danielsen
I think a lot of us have gone through that in the federation, but I think this is another piece where our branding and our intentional focus on our reputation has really helped us because we've really talked a lot about being inviting. Agreed. And so you can't be inviting to people if you're judging them. So you have to be careful when people are using the term "visually impaired," and that's what they're comfortable with. You don't want to say you're a "Blind person and you can't be part of this movement unless you're comfortable with that." We don't want to drive people away in that way.
Anil Lewis:
Agreed. And I think it's important, again, in the onus of giving everybody grace to draw that line. So I don't feel I was judgmental because I wasn't condemning people for saying "visually impaired," but I was championing my perception of myself as a blind person to the degree that it may have been perceived as I was saying. So yeah, just like I don't want to take away someone who identifies counter to how I would, I don't want them to diminish my ability to do the same for myself. But yeah, there's a degree of, Dr. Jernigan called it when you get to that radical independence stage. So that whole zealous. Yeah. So it's difficult.
Chris Danielsen:
Yeah, it is. And I didn't mean to make it sound like you did behave that way.
Anil Lewis
I didn't take it personal.
Chris Danielsen
Right and I was just giving an example of something, and to be fair, I've never actually seen anybody do that. But I guess what I'm saying is it is really important too, and in a way though, maybe your story is instructive because it might've driven people away, but maybe it also made some people think, well, "Why is he so comfortable with it? Why is he so, a little bit aggressive about it?" And I think all of us, just by showing our comfort, can really help people along that journey. And we can talk about.
Anil Lewis:
Lead by example.
Chris Danielsen
We can talk about it too. We can talk about the terms we use and what those signify and why we might want to or not want to use other terms.
Anil Lewis:
And I know it turns some people off because luckily I still maintain relationships with them. And when they came to the place where in their time that they adopted the same identity, they told me that they were really put off. And there were people who again expressed that to me early on in my transition when I wasn't ready for it. That really kind of put me off or postponed my engagement with the National Federation of the Blind. So just pointing that out, having it as part of this conversation, I think helps people be more mindful as they interact with people at those different stages. So with everything we do, it's about blindness, of course. But we also learn as we have these discussions, and hopefully our listeners have also learned something, but even more so if you have something to share to help us learn and grow, feel free to reach out to us because we'd love to have your comments and love for you to actively participate in future discussions of the Nation's Blind Podcast. But until then, remember, you can live the life you want.
Chris Danielsen:
Blindness is not what holds you back.
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