Episode Transcript
[00:00:29] Speaker A: Welcome to the Montana association for the Blind, More Than and Blindness Podcast.
I am Ed Worrell.
[00:00:37] Speaker B: I'm Misty Allen.
[00:00:39] Speaker A: And we are actually the two hosts of the podcast. Going forward, we kind of want to do interviews and bring up topics of. Of interest to people that are visually impaired in the state of Montana and maybe even some national topics and some guests from outside the organization. But for the most part, this is going to be a podcast where we just discuss everything, blindness and low vision in the state of Montana, and kind of just give a new platform for people in the MAB to hear news and hear different ideas and topics.
The first thing I kind of want to do is to give a brief history of the Montana association for the Blind.
We are actually one of the oldest organizations of our kind in. In the country.
There is some documentation out there that says that it started roughly in 1945 or 1946. That is a little unknown at this point. But the one for certain that we do have is the MAB was incorporated in 1947.
So we have been around actually a little over 80 years. We've been incorporated for 79 years. But, I mean, we've got a long, rich history in the state of Montana, and the organization does a lot of different things. We've got the summer orientation program.
That is one of our main programs. You could even call it the flagship program of the mab.
We've got our New Life Learner Retreat program that the Bozeman chapter does once a month for a week.
So those two programs are really big. And then we've got the Low vision center there in Bozeman as well. That was started by a gentleman named Ken years and years ago, but he still helps operate and run it, and it's still going strong to this day. And then we've got a number of chapters around the organization.
Misty, I think we have what, seven or eight is that.
[00:02:57] Speaker B: Then you may have to help me remember all of the names of the chapters. Let's see if I can do it.
Okay. Okay, so let's see.
The district one is Missoula area.
We do not currently have a chapter within that area.
The second would be the Capital City Chapter in Helena. And the Butte Chapter. Is that the Silver Bow Chapter? Yes, in Butte. Okay, perfect. And then, Ed, are you in Region 3, District 3?
[00:03:33] Speaker A: I am the president of the Roe River Chapter here in Great Falls. And then.
[00:03:37] Speaker B: Exactly. And then Lewistown. Yep.
Which is the
[00:03:45] Speaker A: Snowy Mountain Chapter.
[00:03:46] Speaker B: Snowy Mountain Chapter, exactly. Thank you.
Okay, so Region 4 is. I believe that's Bozeman.
Is that correct? I think that's the chapter.
[00:03:57] Speaker A: Yep.
[00:03:58] Speaker B: And then Region 5 is the Rimrock chapter, or the one here in Billings, which I am located in.
And then we have the Laurel chapter, and that is all of our chapters. We do have the sixth district, which does not currently have a chapter, but it does have a social group that meets their monthly called the MAB Connect.
So the structure in general of the MAB at this point is that we have the state board, so we have district representatives from each of those regions, plus three vice presidents and the president.
We have an executive director, an administrative assistant, and a parliamentarian.
Okay. Okay.
[00:04:48] Speaker A: That's a lot.
[00:04:49] Speaker B: Yeah, it's a lot.
[00:04:52] Speaker A: We're spread out throughout Montana, I think.
Last number I saw, we've got somewhere between 170 and 180 or 185 members.
So we are the largest organization of our kind in Montana.
So we, we've been around a long time and we've got a pretty good number of, of members right now.
[00:05:15] Speaker B: Indeed.
[00:05:16] Speaker A: So we're, we're doing pretty pretty decent at this point.
[00:05:20] Speaker B: Yeah. And we're, we're giving the, the general structure and history for those who are new to this information. We're hoping this podcast goes out and beyond our membership so that other people can kind of get an idea of the structure that we have at this point in time.
The stories that we have are the most powerful thing that we have in our back pockets. It is what makes the real difference when it comes to other people understanding what we experience as blind and low vision individuals within Montana.
And so we were juggling between the ideas of how it is that we are defined from the outside and how it is that we are defined within the community, but also how it is that we define ourselves as people. There are some really interesting conversations at the convention which just happened recently to sort of spark our ideas for how we wanted to structure this.
So I was thinking what we could do with this was start with what labels do you feel as if you have been given by society at large?
Whether you choose to engage those labels or not?
[00:06:33] Speaker A: That is a loaded question because nine times out of 10 it is just simply, I'm blind, which, as you and I both know, there's actually a very, very, very small population of people that are actually completely blind in the world.
In fact, those that are classified as blind, such as myself and, and even Misty, we're both.
I think I've got just a little bit of light perception. I think you're about the same, aren't you, Misty?
Or do you got A little bit of shape.
[00:07:06] Speaker B: I think I have light perception at this point. If I turn a spotlight directly at my face, I feel as if there's a burn, but I don't know that I register anything.
[00:07:16] Speaker A: So I. I've got a little bit. Ironically, I think I've got the most vision on this podcast, and that's not very much.
I see a little bit of light perception, but I think the biggest misconception and label that's put on people that have a visual impairment or visually impaired or however you want to word it, are that we're just blanket blind.
[00:07:44] Speaker B: Can I squirrel for a second?
[00:07:46] Speaker A: Go for it. Yes.
[00:07:47] Speaker B: Okay, Question for you, because a lot of people, I met a young man when I went to get my first guide dog back in 2007 who had prosthetics, and people had asked him all his life if he saw black.
Well, he said he did not see black, but he didn't know how to describe what he saw.
I personally, I have what I would consider to look like a static television screen with these little light worms that square. Swarm around in there.
I don't notice it most of the time. What about yourself?
[00:08:16] Speaker A: That's right where I'm at. It looks like a fog unless I go outside and it's really bright and I mean, has to be super bright. Then it's yellow.
[00:08:26] Speaker B: Okay.
[00:08:27] Speaker A: There are days where it's darker. It's more like different shades of gray. Dare I say 50 shades of gray? No, that's something completely different.
No, no, that's something completely different. No, it's.
It's.
Yeah. My vision is really just kind of different shades of gray ranging from light to dark. That's almost black, but still gray.
So it's. And I do get little flashers and things like that, so I see that. So it's not. It's not like. It's just like the end of the world type of thing where it's just black and it just falls off like there's nothing.
[00:09:08] Speaker B: I know. For me, mine doesn't register unless I think about it. Like, I just ignored that input most of the time. Do you.
Do you notice it unless you think about it or.
[00:09:21] Speaker A: So there are days that I notice it, and that's purely because of being a diabetic. And the diabetic diabetes is what caused my vision loss. So my vision, what's left of it, fluctuates sometimes because of the diabetes.
So I notice it more, some days less. You know, it's just. It's a. It varies from day to day. To be honest.
[00:09:44] Speaker B: Gotcha. Thank you for sharing.
[00:09:46] Speaker A: Yeah, yeah. And it's because I. I know we're not too uncommon. I mean, retinitis pigmentosa, I've got diabetic retinopathy.
So, I mean, we both deal with retina things, so we're kind of similar in that. That aspect, but they got us to this point very wildly different.
Because if I'm not mistaken, you.
You had vision or pretty functional vision for the. The bulk of your life, didn't you?
[00:10:16] Speaker B: I was technically always considered legally blind. I was diagnosed at the age of five. Like you mentioned, I do have retinitis pigmentosa, or rp.
I was diagnosed very, very young, but I was pretty much always legally blind. I've been considered totally blind for about 10 years.
[00:10:36] Speaker A: Okay. Yeah. I actually was not born with a visual impairment. I actually lost my eyesight just over 18 years ago.
So at the age of 24, I lost all, pretty much all of my vision in nine months after 11 eye surgeries.
Because the.
For those that don't know diabetic retinopathy, basically your. Your eyes bleed behind the retina and develop scar tissue behind it and tear the retina away from the eye, the back of the eye.
So my. One of my last visits I saw with my eye doctor, he told me that my retinas look like a piece of leather.
I don't know. I don't know if anybody has ever tried to look through a piece of leather.
That's not. Not going to happen too well, too easily.
So that's pretty much why I don't have any vision, is there's so much scar tissue and tears in the retina from the scar tissue that it just.
There's nothing left. Really.
[00:11:43] Speaker B: Yep. So, okay, well, since we. We did mention that I also have the total blindness, if I were to dive into that first question of the definitions that culture puts on me, I feel like there are probably two that are the most. Well, perhaps three. Three that are the most pertinent, that have nothing to do with my choices, that they are just the labels that are put on me outside of who I am. And that would be being blind.
Recognizably blind. Although I do like messing with people to see how long I can get away with them thinking I'm not right.
And then female, which does play a big role in my personal life and how I navigate the world.
I am a single female who lives alone. And so that has a pretty big space in my head for how the world views me.
And then finally, Caucasian, which I think is definitely has affected my life opportunities or, or whatnot in that sense.
[00:12:48] Speaker A: So. So with you saying that I would have to change the order of my disabilities, some people would argue that number one is male, that, you know, that's the biggest disability I have. The number two is my vision.
Actually, I don't even.
Me personally, the way I look at myself is I don't even look at vision as being part of, of who I am. It just happens to be a sub division or subsection of who I am because, you know, I, I do a lot of things that, that's what defines me. But then I'm a diabetic first and foremost and then the vision is a secondary cause or lack of vision is a secondary to me.
But sadly, society flips that on its head. And the vision aspect of it is always in the forefront. Forefront because diabetes is one of those invisible diseases that isn't. Unless I'm actually having a severe low blood sugar or high blood sugar, it's not usually visible.
[00:13:55] Speaker B: And this is gonna see. Now we've slid a little bit into to personal identity.
ED is at least hinted at where we're going with that.
But you bring up an interesting point about disability and invisible disability as opposed to visible disability.
I'm going to go into that a little bit later. As far as my perspective on that, I'll deep dive because I do think that's a super pertinent topic.
But from there, let's talk a little bit about say, within the blind community because we've talked about what the, the overall society when they approach us in a public space that is, that is their impression immediately and everything else comes afterwards. So within the blind community that can feel a lot different. Like what position we have there.
What do you feel that the blind community has tagged you with? I can give you some, but if you want to try.
[00:15:00] Speaker A: So the big one to me is weirdly, because I'm a small minority inside of a small minority being completely blind.
I still have the same unfortunate category placed on me because like especially here in Montana, I'm sure you've noticed you've been here a few years now.
Most of the people, especially in the mab, maybe even the NFB of Montana, or even people outside of any of the organizations are low vision.
There's not nearly as many of us that are what we would consider to be completely blind or totally blind or you know, blind, whatever tag you want to put on it.
I still find myself in that minority of a minority that people look at me as. Oh, you're blind. That must be so tough.
[00:15:56] Speaker B: Well, and that's an interesting.
The funny thing in that for me is that when I was younger I remember going to conventions and things for blind communities. And at the time I felt like I was two sided to be one of the blind community.
And then next thing I knew I was too blind to be in the blind community.
And I don't know where that changed, but it definitely did feel.
[00:16:25] Speaker A: It was so gradual you didn't know where it changed.
[00:16:29] Speaker B: Yeah.
[00:16:31] Speaker A: And I unfortunately I never went through that type of transition from being two sided to be in the low vision or blind community and then being too blind to be in the low vision or blind community.
I was just there, there I had to make.
[00:16:48] Speaker B: Yeah, I wonder if that is that feeling, that experience of being outside of the the community. I wonder if that is external or if that is internal because for me personally, like I said, when I was somewhat sided, I felt two sided. When I went totally blind, I felt too blind. Do you think that those labels are outside of us or inside of us?
[00:17:17] Speaker A: I think a lot of it is. Is more of an internal judgment or internal feeling, however you want to put it.
A lot of it stems from how we, I think we view ourselves because of the people around us.
Because you're. I don't. You probably noticed it as did I.
Your community of friends around you, maybe even family for some people change. The dynamic changes after you lose your eyesight. And I was no longer in the same group of people I was hanging out with when I had vision.
But now it's a vastly different group of people than I ever would have of thought I would have communicated with, hung out with.
Not to say that's a bad thing. It's just different than what it was when I, you know, was. Had fully functional eyesight and, and could, you know, be a normal.
[00:18:24] Speaker B: What?
[00:18:25] Speaker A: Well, what society considers to be normal. Functional part of society.
[00:18:30] Speaker B: So I'm gonna.
I don't know if this is throwing you under the bus, Ed. Hopefully it's not. But. But I want to bring in what the blind community has labeled you as. And I do know you well enough to know you're not likely to say it yourself.
[00:18:47] Speaker A: Let's see how close you are.
[00:18:49] Speaker B: When I moved into Montana, I had not been here terribly long before I was informed that if I had technical issues in Montana, I should contact this guy Ed, because he was the tech guy in Montana, which is a huge title. That's a huge label.
We've had a lot of conversations about this, Ed, and I.
Because it can be very uncomfortable when these super high expectations are put on you. But because you are very tech adept and that is not necessarily the normative.
You have definitely been labeled with that. And also as a successful small business owner, those are. Are both labels that, that I know that you've gotten as well as. As a leader, which you may actually integrate a bit more, being the president of the Row River Chapter as well as the first VP on the state board.
Correct.
[00:19:53] Speaker A: All of that is. All of that's. That assessment is correct.
Yeah.
The unfortunate part of it is, is I did, I guess, unfortunate and fortunate. I. It goes both ways, honestly, with the label for. We'll start with the technology one.
It's. It's cool that I'm recognized for something. Don't get me wrong. I, I don't go advertising to people that I'm this, I do this type of stuff because, well, people know who I am.
You knew who I was before I knew who you were, and that happens a lot, sadly or fortunately, whichever way you want to look at it depends on what I'm trying to accomplish that day.
But it, it really can be a burden sometimes because that label has been stuck on me.
There are people that think that's all I do.
That's all I am is, you know, oh, he, he knows how to do this. I mean, yeah, I'm a Apple certified teacher. I'm a JAWS certified professional. I'm a Zoomtech certified professional.
I mean, the certifications and qualifications, they go on for a mile. But I also, that's not who I am. That's just a small part of me and the small business owner that kind of goes in in tandem with the technology aspect of it because I, I had an idea to start a business in 2012 and got it off the ground with a former business partner in 2013.
And we've been going ever since. So it's just, it's one of those things that once you get that label, sometimes it just sticks with you, unfortunately.
And there are times where people, like I said, just.
They think that's all, that's all I am, or that's all I should do or can do, which is far from the truth, but it's just, it's fascinating the different types of labels and the different groups that we get slapped on us.
[00:22:09] Speaker B: Well, and one of my questions to you would be because you are very skilled in that.
However, I wonder if there is an added pressure to always be able to have the answer if your name is going out and around before you ever even are given the opportunity to see whether or not you can accomplish a job, but everybody is assuming you have those answers. Does that create an undue pressure?
[00:22:36] Speaker A: A lot of times, yes. Like a prime example is at convention here recently.
There were several people that came up to me asking for help with their technology. Even though I was convention chair and basically was running around like a chicken with my head cut off during convention, they didn't stop to think that maybe it wasn't the right time to ask those questions.
I mean, I told them, honestly, if I couldn't get to them during convention, I'd get a hold of them after.
And I mean, there's still that pressure that if I don't get a hold of them after, they could in theory get mad at me because I, you know, said I would do this and, you know, putting on a convention, there's a million things going on at one time.
There's a chance. I, I forgot.
And it's just one of those things that there is an added pressure and especially if there's like a new product, say, for example, on the market, I haven't seen it, haven't gotten hands on it, haven't, haven't done anything with it. Well, why don't you know it?
Well, it just came out a month ago and our equipment's expensive.
I can't do everything right.
[00:24:08] Speaker B: I, I know that, that if I were to take that and spin it into a completely different situation, if I, if I spend all of my time cooking and I've got my friends saying I'm the best cook in the group, I can't mess up, you know, I, I, I can't serve bad food.
Whereas if they didn't have those high expectations, then, you know, I also think
[00:24:30] Speaker A: you couldn't serve bad food.
That's just, that's who you are.
[00:24:35] Speaker B: You're doing the thing. You're doing the thing.
[00:24:37] Speaker A: Look at that. See, See how that spins right around?
No, I, and I would actually turn around and ask you kind of the same question because you being, you know, second vice president of the board, the MAB ambassador, you solve all the world's problems over the phone.
That's got to create on your side a little bit of pressure too. I would think when you finally get to meet some of these people in person or at convention or summer program or, you know, wherever it might be, I'm, I would imagine you've got a little bit of it too.
[00:25:18] Speaker B: I haven't had it pop up in, in that particular way. I don't think I am as renowned as you at this point.
[00:25:25] Speaker A: Give it time.
[00:25:25] Speaker B: But I would say.
I would say, for instance, one of our members that I stay in really good contact with, and I've helped out with a lot of different situations that contacted me one day to ask about resources that I had no clue how to find.
And I let them know, you know, I'd be happy to help, but I didn't actually know any more than they did. Um, so it was going to take me some time to figure out how to even locate that kind of information. Right. And they said, oh, well, see, you just always have the answer. So I assumed you would know. I was like, no, I do not know everything at all.
[00:26:05] Speaker A: You don't. You haven't tapped into that, you know, that mom power, that they know everything?
[00:26:10] Speaker B: I could pretend. There's a lot of pretending that goes into mom power where you. You just look like you know and then they. They confess. That's what mom power is.
[00:26:19] Speaker A: The key is you just say it with conviction.
That's. That's the key.
[00:26:24] Speaker B: Right. But.
[00:26:25] Speaker A: But no, that. That is.
And I know you and I are heavily involved with MAB and do things outside of mab, but even those same societal pressures come down on people that are blind or low vision out in public because we can't make a mistake without people noticing or even asking, oh, we, we got lost in a corner, arcane, got stuck under a chair. Like, do you need help? You look like you need help.
That's kind of the same type of societal pressure in a slightly different scenario, but same kind of concept where just going out with your cane or your guide dog and you get turned around for half a second, people are asking you if you need help, or by the time you get it figured out, they're calling you an inspiration, which is annoying too.
But it's just one of those societal pressures that we unfairly can't make a mistake or just have a bad day. We have to be on top of it all of the time.
[00:27:41] Speaker B: Well, and that's. That's tapping a little bit into what we're going to talk about when we talk about blind etiquette and things that we can deal with there. So that's a good tie in it. It's like you almost knew what I was going to say.
[00:27:51] Speaker A: Huh? It's like I read this thing or put it together or something.
[00:28:00] Speaker B: Okay, so let's see for myself, when it comes to labels within the blind community, my labels at this point would be that I also serve on the state board as the second Vice president.
I am currently serving as the ambassador for mab, which means that I'm basically in position to help our membership out and kind of whatever means they want. Some days that is just a little bit of emotional support.
Sometimes that is finding resources, sometimes that is problem solving with folks.
So the ambassador role is a big part of what I've got. And then I also am the vice president here in the Billings chapter.
I think in general, if I were to say of a label that exists within the blind community.
Unfortunately it's not just the blind community. It has to do with the way I present myself.
One of the big expectations for me is that I am always, how do I put this?
That I always am able to have a sense of humor, be pleasant, keep the mood up, be a positive influence on others, be calm, be a mediator.
[00:29:24] Speaker A: You're such an inspiration.
[00:29:26] Speaker B: And to laugh.
I've had my laugh commented on more times than I know how to count.
And so being the person who helps to create positivity for others is a huge part of my labels I think especially within our community.
[00:29:53] Speaker A: And that's another undue pressure of trying to keep that, that level of positivity
[00:30:01] Speaker B: because
[00:30:03] Speaker A: oh man, we have days.
Seems like more than others, other, other parts of the population or community. But yeah, that I got that one time too where somebody is like, you're just always so positive.
Well if I'm not, I just don't
[00:30:24] Speaker B: bring the other one out into this room.
[00:30:28] Speaker A: I use my public facing voice.
That's what I use. You don't get to hear the other stuff because that would make a sailor blush.
So yeah, we don't want to do that.
[00:30:43] Speaker B: It's our goal to, to keep. So my personal perspective is that most of the time when we hurt others it is because we are in pain and it's super important to have the self control and the cognizance, the awareness of ourselves to keep from spreading the toxicity.
And so if I'm having a bad day personally, I will not call you because you don't need my toxicity in the struggle that you already have in your life.
[00:31:14] Speaker A: Right.
[00:31:15] Speaker B: Do you, do you feel like I've covered my in group labels?
[00:31:20] Speaker A: Probably more so, yeah.
[00:31:22] Speaker B: Okay.
[00:31:22] Speaker A: Yeah, you've done a. You've done a smashing job.
[00:31:28] Speaker B: Excellent, excellent.
So from there I guess we could slide into how it is that we define ourselves.
This is, this is a, an interesting and broad topic because one of my arguments has always been that there is. I don't have enough words to fit myself into a text box. You Know, anytime you go on to something, this is. Well, describe yourself. Like, how does one do that?
When I was in college, I had a class in.
It was race, gender and identity course. And we had to create a project that defined us to other folks.
My personal presentation was a slideshow. On that slideshow, I had photos. Obviously I was more sighted.
Photos of myself with a line of description underneath.
And some of those included that I was a mother, that I was a daughter, that I was a student and a teacher.
All of these different bits and pieces that I felt made me who I was as a person.
The roles that I stepped into by choice rather than because they were placed upon me.
And somewhere towards the end of this slideshow was that I am blind.
Now, I will address here that one of the conversations that often takes place within the blind community is the difference between saying, I am blind and I am a blind individual.
I understand and respect the person. First thing a person with blindness is actually, it is because it's person first.
You're human before that label. I respect that greatly. I also do refer to myself as a blind person.
When I'm. When I'm in a mood, I will call myself a blindy.
[00:33:38] Speaker A: As do I.
[00:33:40] Speaker B: Right.
It amuses me.
And. And so that is part of how I do. It is never meant to be derogatory because I don't think being a blindie is derogatory. No, it's. You know, it's. It's just a part of how I view myself and have integrated blindness into who I am now. Blindness does affect everything, right? It affects the way the world responds to me. It affects the way that I am able to respond to the world. But it does not define me. Right. It is just part of who I am within the context of the whole.
[00:34:21] Speaker A: Right.
[00:34:23] Speaker B: Personally, if I were to pick one of my roles, one of. One of the pieces of me that I think takes up more space on the stage than anything else, it is actually being a mother.
I have two children, as you should. Thank you.
I have two. Two kids. They just turned 27 and 25 this month. I have a son and a daughter.
They are remarkable, beautiful human beings. And I will not gush too long because nobody wants to hear somebody else gush about their kids forever. But they are absolutely the reason I am still on this planet. The reason I do everything I do. The reason I am the person that I am today.
Past that, how would I define myself?
I tried to be a good friend. I tried to be a compassionate person.
I try to be a cook. I love food. I love food more than. It's probably healthy.
[00:35:30] Speaker A: Me too.
[00:35:32] Speaker B: It's a beautiful thing.
So I really enjoy cooking big, elaborate, ridiculous meals for friends and family, being a host, taking care of people.
I think in large part I've always considered myself to be a support to others.
That's a huge part of how I envision my role in this world.
I know that some of the positions I've taken at this point are leadership roles, but leadership, I've never considered myself a leader. I've considered myself a piece of a collaborative machine.
[00:36:09] Speaker A: A lot of, A lot of times leadership roles are just that. They're. They're support roles.
[00:36:15] Speaker B: Yes.
[00:36:16] Speaker A: You're supporting, whether that's management in a retail establishment or a leader on the board, you're supporting the people that make everything possible. Your co workers, your colleagues, your, your membership. Like in the mab, you're actually part of the support cog, helping them do what they can do in the organization or, or in a place of business.
[00:36:43] Speaker B: Yep.
I'd also say that as far as my education did have a big impact on the way that I viewed the world and the way that I, I interact within it.
I, I studied social sciences, so psychology and anthropology.
I love people. They're all puzzles. They're fascinating.
I like to see through other people's eyes what their perspective on the world is, how they experience the world that they're in.
So a part of my self definition would be as a social scientist.
So yeah, mother cook, social scientist. Try to be a good supportive friend.
Nice. A little, a little impish. I'm gonna be honest. I do, I do have a slightly mischievous sense of humor and I think that defines me a lot.
A lot.
[00:37:40] Speaker A: There you go.
[00:37:43] Speaker B: It's how I have survived up to this point is to remember to play, to remember to find humor in the world, to remember to laugh. Um, so yeah, that's me. How about you? How do you self define?
[00:37:56] Speaker A: I like your definition of people being puzzles. I kind of view myself as being.
I don't know if you ever played it, but there's this puzzle game that is called Lights out where you hit and then you press the button down to turn the light out, but then another light turns on and you have to get it in the right sequence. So that's the puzzle. I envision myself as where I'm just kind of.
Someone pushes a button and I kind of go out into the. The complete opposite side of the puzzle.
I'm always like you, a little mischievous at times.
But no, I, I think I kind of fall in line with you a little bit of viewing myself as being a leader is probably the right. The right word, but more. More supportive than anything.
I have this weird innate ability to get on the phone or talk to somebody in. In person, and they will tell me everything.
Like, I've just had that ability to understand people, talk to people.
I guess I probably got that from my. My mother.
She was real outgoing and people loved talking with her, so that's probably where I got that.
But what most people don't really know about me. I mean, Misty probably knows this about me, but one of my big passions in life actually is music.
Like, last year alone, I listened to 15,000 minutes of music.
I listen to a ton of music.
I make music. In fact, the intro to this podcast I actually have created.
So that'll be a surprise to everyone.
Although I guess if you listen to the podcast, it won't be a surprise because you heard that before I said this statement.
[00:39:54] Speaker B: They already heard it. Yeah, it's just a surprise to me. That's what he's saying. It's just a surprise.
[00:39:58] Speaker A: Surprise to Misty.
But no, I.
Music is a big part of me. It's a big part of what makes me who I am.
I was a trumpet player starting in fourth grade, going all the way through high school.
First chair, first trumpet in senior, or as a senior in high school, actually even as a junior in high school. But it just.
Music has always been a part of my life. My parents encouraged that before I lost my eyesight, I also was an artist.
A lot of people don't know that about me, and that kind of shapes how I view the world.
I could actually sit across the table from someone and draw them in a very lifelike portrait.
But I mostly liked doing graphic design, like logos and different things like that.
Some of the biggest canvases I ever worked on were. Was actually painting a friend's race car every year for before the racing season. So it was one of those things. I'm. I'm. I'm very much a car nerd. I love, love cars. Still passionate about cars and things like that now, but.
And then the technology comes into it a little bit. But I mean, I. I always grew up with a computer in my house because my dad was a computer programmer analyst for a local hospital here in Great Falls.
So I've always grown up and always had computers in my life. So it was just kind of second nature.
I don't look at that as being a super big part of my life, even though that's what how a lot of people define me as an individual is the tech guru or the tech, you know, what, whatever label you want to throw on it. I've, I've heard them all.
But really and truly, I think a big part of it is, like you said, being friendly, kind of having good friends. I have a, a number of, of good friends that I talk to on a regular basis.
It's just, it's just one of those things of keeping a good foundation and community around you, being supportive to those. And if you're supportive to, to those people in your community, they're going to be, they're going to help you if you ever need it. So that's, that's a big part of who I am in like the blindness world. A big part of who I am is because of the mab.
I was actually a student at the summer program in 2010 and 11 and the director at the time in 2011, halfway through the four week program goes, hey, can you teach Apple Computers?
I'm like, well, let's see, we'll figure it out. And that was as a student. And that's kind of the path it took me down because I kind of took to the assistive technology like a fish to water.
It just was second nature because I grew up with it in my life. My, my entire life pretty much. So that's in a nutshell. That's kind of how I describe myself or how I label myself is creative F. Like kind of family oriented, friend oriented, type 1 diabetic. And then blindness is actually last in the whole sequence of things.
[00:43:36] Speaker B: I think. Cough, cough. You may want to mention husband. So Becky doesn't take you out after
[00:43:41] Speaker A: his gosh, yeah, probably someone did that to me at convention too. And I'm like, oh yeah.
She's so quiet doing things in the background that people forget she's there.
Sometimes me. She'll walk out of a room sometimes and not tell me she's leaving. And I'll be talking to dead air.
I'm like, damn it. So quiet.
But, but no, I, Yeah, husband for 18 years. Becky and I have been. Been together for 20 years. So she can't get rid of me that easy.
[00:44:18] Speaker B: So she's tried.
[00:44:19] Speaker A: She's tried. I just.
[00:44:20] Speaker B: On the sidewalk.
[00:44:21] Speaker A: Keep coming back.
Yeah, I just keep coming back.
[00:44:27] Speaker B: Well, and, and you did mention, say for instance, traits that are important to you internally, such as being creative and the mischief. I knew that Ed and I would get along at least in some form or fashion. The first time we were in a board meeting and the president was discussing courses that we could take as board members to help us function on the board. The class was titled Dealing with Difficult Board Members. And Ed and I were sitting next to each other and we both stood, started snickering because we knew that we are difficult board members.
And that's when I knew we would get along.
[00:45:07] Speaker A: Oh, yeah.
Super difficult at times.
[00:45:13] Speaker B: We're not until we are.
I think some of the other ones that you'll find often that are required to be.
I'm not sure how to put this. In order to sort of gain an upper hand over the disability that we deal with.
If we're being nice, we call it tenacity.
If somebody doesn't like what we're doing, it's stubborn. It's stubborn or obstinate.
I would definitely say that's a huge part of who I am. I incredibly stubborn.
But we like to call it tenacious.
Tenacious sounds better.
[00:46:01] Speaker A: I've been called non compliant recently.
So yeah, that's a. And I think to deal with a disability like blindness that is so kind of in front of you and in front of everybody else. Because really and truly, if you're. You're completely blind or have very, very limited vision, you're likely going to be using a cane or a guide dog or, you know, a various, various number of other mobility tools and aids. But it's very out front, both figuratively and literally.
[00:46:40] Speaker B: Well, when we're bringing it in on that level, I think part of the reason why the stubbornness is, is necessary to fight against the larger community label. Not the blind community, but society as a whole.
There was a woman in the University of Oklahoma who did her dissertation on the culture of blindness. And what she found was that the culture of blindness was a culture of stigma, which I'm not sure how well that translates, but the idea is that the only thing that draws us together as a community is the way that we are treated by the outside world.
[00:47:23] Speaker A: Part of it, yeah.
[00:47:25] Speaker B: The stigma that's placed upon us. She did a particular piece within her dissertation that was a questionnaire that was sent around to the entire United States asking them different questions about their perspective on blindness.
One of the questions was a word association.
So she took the word blind, and then they had to do whatever their word association is. The top three answers around the United States were helpless, hopeless and pitiable.
That is the label that blindness has for us.
That's what underlies the label.
So in order to walk out into the world and prove that that's not what we are. We have to fight the expectation that that's what we are every single day.
[00:48:13] Speaker A: Yep. And that's. That's tiring in itself. At times.
You walk into a room that. And that goes back to what I had said kind of previously is a part of the tough. One of the toughest parts of being blind is we feel. There are times we feel like we can't make mistakes out in public because they're amplified by 10, like, tenfold, just because maybe this is the first time somebody in the public is interacting or even seen a blind person out in the wild. They do exist.
And we. We. We unfortunately carry that kind of level of anxiety, personally, of, I can't make this mistake. I have to be perfect anytime I use my cane or my guide dog or any. Any. Anything out in public. It's just.
That is definitely.
It's almost a label in that. That sense of perfection. And I don't mean perfection as all blind people are perfect because, oh, boy, we're not.
[00:49:28] Speaker B: It's that we are not allowed to make mistakes.
[00:49:31] Speaker A: Yep. Yep.
[00:49:34] Speaker B: Well, I worked at the. One of my last jobs, the place that I worked there. This was a battle that I fought every single day, and it was not one that I seemed to be able to prove to anyone otherwise.
They would let me do my job to an extent, but they would not let me expand in any way. When it came to something as simple as cleaning tables in the back room, they would assume that I was not capable.
And while I worked there, there was a woman one day who was walking through the kitchen with a cup. It was a ceramic mug. She drops the mug, it shattered, and a piece of it sliced her ankle open. And they ended up having to call an ambulance, and she had to go get stitches. And it was a big mess.
And I felt terrible because rather than my first thought being, oh, my gosh, is she okay? It was. Oh, my God. I'm so glad that wasn't me. Because if I had done that, it wouldn't be because I had a clumsy moment. It wouldn't be because mistakes happen.
It would be, see, I told you. It's dangerous. You're blind. Yep. Yep.
[00:50:50] Speaker A: And that's unfortunately one of the stigmas or. Or even yet another label of danger or unsafe to be blind.
It just.
That's unfortunately just. Society's just got these preconceived notions about people that are blind or low vision.
And the other. One of the other things I always like to bring up is especially for. For those that are new to blindness or Low vision. It kind of goes along the same lines of the stigma.
The more you pretend you can see, the more blind you look.
You're not fooling anyone.
[00:51:34] Speaker B: Oh, do elaborate, sir.
[00:51:36] Speaker A: So I actually, when I was going through some of my surgeries, I struggled really bad with being able to see things, especially if I was in some place like the local Walmart here at the time. Bright white shelving, bright white floor, bright white everything inside the store.
And Becky noticed this one time when I was trying to find her in an aisle, I was squinting and kind of trying to, you know, fake it till I make it.
And she finally real, because I. I was on the other end of the aisle from her. I could barely see her down at the other end. But then she realized that, oh, crap, he is more blind than I even realize. And maybe even me as an individual and her, we. We kind of realized it at the same time that faking it till you make it with your low vision or that can be dangerous to not just you, but every. Everyone else around you.
[00:52:35] Speaker B: Oh, okay. So.
[00:52:37] Speaker A: And that's part of it.
[00:52:38] Speaker B: This, in context of this, you're saying that the more one tries to rely on one's eyes, when the eyes are nonfunctional, the more blind you come across. Yes, to the outside.
[00:52:51] Speaker A: Because you're trying to overcompensate for your lack of vision. Whether that's, you know, walking slower, squinting, kind of. We position our body in different ways to try to make our vision work better, and it really. It's not going to help. Doesn't matter how you position yourself for anything. Your eyes just aren't going to work as well as they used to or don't.
But yes, being low vision and being brand new to it, the. And I'm not saying people need to just rush and be okay with it, but there is a process for every person. Every person's process is different.
But the. The more you try to hide it, the more blind or low vision you're going to look, unfortunately.
[00:53:44] Speaker B: I see what you mean. So when I. When I was younger, I definitely was one of the stubborn ones who fought against having any outward sign that I was visually impaired. I very much wanted to just be a person, to not be separated in that way. I had enough other things in my life that did separate me, but it took. I was in college, and I'd had a couple of pretty nasty accidents that were witnessed by other people around me. And I finally ended up deciding, okay, I'm tired of looking like the drunk chick on campus, because that's mostly what it came across as.
[00:54:25] Speaker A: Sure.
[00:54:26] Speaker B: Just not being able to function in that way. Now one of the interesting. I guess we're going to go off on a side quest here a little bit, but that is in fighting, using the tools that would actually make things easier and depending on that broken sense as far as trying to be like a sighted person.
But if we flip that into a different context of let's say when I'm having a conversation with someone, I do my best with at least the one eye that's not lazy to focus in to where a person's face is. And I'm fairly good at looking like I'm making eye contact.
I'm not, I'm absolutely not.
But I have had a lot of people comment on that. I've had a lot of people comment on the way that I present myself in public, the way that I dress, that I don't look like a blind person.
So there are some intricacies here I think in and the difference between trying to fake it and the finding ways to integrate your body language, your non verbals in a way that kind of breaks expectations.
[00:55:53] Speaker A: Right.
And I've noticed through the years of doing this because I've been working with MAB and outside MAB for know, 16 or or more years now.
A lot of it comes down to the overwhelming theme of our convention this year. Confidence in yourself.
If you don't have confidence in what you're doing or at least telling yourself you're confident in what you're doing, that'll show through. And I know it's hard some days, like even for you, you or even me to even go outside and walk down the sidewalk to go to work or go to the coffee shop or you know, wherever it might be.
Take a deep breath, stand with your shoulders high and do it.
You may not be confident that moment, but at least you look confident.
[00:56:45] Speaker B: I think part of that too is that what that and this ties back to the presentation they gave there at the convention.
That confidence is not necessarily a feeling.
It's within the behavior.
But I don't know. I'm not confident that I can do anything.
But I am confident that if I end up in a situation that I need to handle, that needs to be handled, I am capable of finding a way, one way or another, even if I can't personally do it. If I'm confident that I have the resources and the ability to adapt and change my way of approach, then the thing can be accomplished. So my, my confidence is not that I have the skill to do the thing. But that I can figure out a way.
[00:57:37] Speaker A: Right? Exactly. Yeah. It's. It's.
Confidence is one of those weird things.
It. It comes and it goes. Pesky thing.
But. But no, it's. And that's kind of tying it all back into.
What I had previously said is if you present yourself as being confident, shoulders, you know, shoulders back, standing tall, that'll resonate through. Through yourself and your body, and you won't look like a blind person that's trying to, you know, fake it as a sighted person.
Even if you're using your cane or your guide dog and you. You're, you know, guide dog handler. I'm a guide dog handler. You're just between dogs.
That's part of being a guide dog handler is even if you're not confident in where you're at or your situation, you damn well better. Your body language better say you're confident, or else that dog's not going to do what you need it to do.
And that's a.
A big. Was always a. One of the biggest confidence boosts I had was getting a guide dog is because you have to do things confidently and speak confidently to the dog. Because if you go, all right, Fluffy, let's.
[00:59:00] Speaker B: Let's go forward.
[00:59:02] Speaker A: Well, yeah, forward.
[00:59:03] Speaker B: Let's.
[00:59:03] Speaker A: Let's cross the street. They're not going to do it.
[00:59:06] Speaker B: You.
[00:59:07] Speaker A: You mean you got to be like fluffy forward. And you got to be. You got to have confidence in your voice whether you're confident or not. That's another story.
But I think that's a big thing with overcome. That's a big thing for people to overcome when losing eyesight or have lost eyesight, is feeling confident in your own skin.
[00:59:28] Speaker B: Well, and when you. When you were talking about the. Trying to pretend to be sighted and sort of that. That stage that many of us have gone through where we fight using the tools that we need.
It makes me think of quite a few people that I have spoken to here in Montana who are in that transitional period. And what they feel is that by breaking out the cane that they are. They are showing themselves to be vulnerable. And that is a very scary thing. It is the only note. Yeah.
The only note that I have on that particular perspective that does tie into this is that we have a choice when it comes to these moments, because people's perspective is one thing, what people assume we are, and it does impact the way that they treat us. However, the difference between not carrying a cane when you need one is attempting not to look vulnerable, which we discussed. How that doesn't really work because we are giving off those visual cues that we are the whole time and actually being vulnerable. Right.
So we may look more vulnerable within our own minds if we have a cane.
[01:00:49] Speaker A: Right.
[01:00:50] Speaker B: But we're actually making ourselves more vulnerable if we refuse that cane.
[01:00:54] Speaker A: Right, exactly. That's. And that's, that's kind of where I was getting at or what I was trying to get to. And absolutely there's, and it's just, and sadly I'm trying to figure out how to say this society makes us feel that way. It's not necessarily, I mean, it is partly in our own head, in our own mind, but society sometimes makes us feel that way because society looks on people with disabilities as kind of being second class citizens, unfortunately.
And that, that weighs on individuals because we don't want to be a burden to society or burden to loved ones, burden, a burden to friends.
But in reality, you can do a lot for yourself just by using the cane when you need it. Having the cane when you need it. I mean, I'm, I don't use the cane if I'm in my dad's house or my house or my office, but if I need to walk down the street, it'd be stupid for me to not use it.
So it's, it's definitely one of those things that you need to use your tools as vulnerable as you feel sometimes with that cane that's normal or even with the guide dog, because there are times, but it's, it definitely you're less vulnerable with using the tools that are given to you, whether that's a physical tool or skill set that you've. Like being a guide dog handler, we use a lot of time perception and sounds around us, so we use those tools when we're traveling rather than sensation from a cane or things like that. But if you use the tools that are given to you and that you've learned over the years, you'll be far less vulnerable than just, you know, not using the cane or the dog or, or even trying to, you know, God forbid, try to pretend you're sighted. If, especially in someone like me where I'm.
Well, like I said, I have a little bit of light perception.
[01:03:02] Speaker B: So they do say don't go into the light. So that's probably.
[01:03:05] Speaker A: Don't go into the light.
If I went into the light, it'd be kind of this weird, awkward to the top right hand corner. I'd be jumping around, be weird. I'd be the weird blind guy down the block. Although I could be that now, I don't know.
[01:03:18] Speaker B: I'm pretty sure you already are. Yeah.
[01:03:19] Speaker A: All right, fair enough, fair enough, fair enough.
[01:03:23] Speaker B: But some. Some of this. And it's difficult if you're not used to.
It's difficult if you're not used to people looking at you all the time. I know. As far as for me, walking into a public space with a cane, it does draw the eye. And people. People start analyzing everything you do. Oh, how are they going to get around that obstacle? How are they going to eat their food? How are they going to find their bathroom?
How does this person function?
And you do feel like you're spotlighted all the time.
[01:04:01] Speaker A: How does this person function? Barely some days. But I get there.
[01:04:04] Speaker B: It depends on the day.
[01:04:06] Speaker A: And that's not because of my blindness.
That's other fact.
Won't even go down that road.
But.
[01:04:14] Speaker B: But then there's a particularly difficult one for me, Ed, because I don't like.
I am not a center of attention person, which I know nobody will believe because I'm loud and I'm always around the center, but I actually really hate being the center of attention.
I had to become comfortable with it. I had to just do what I was going to do and understand that someone may or may not be looking, which actually created a different aspect of how I defined myself, which is as a person who is honest and genuine. Right.
I'm not going to get away with anything.
I'm not.
[01:04:58] Speaker A: Okay.
[01:04:59] Speaker B: So I don't know when someone's looking. I don't know when someone's walking up behind, behind me. So if I say or do something, I better be able to justify those decisions with genuineness and honesty, because hiding is not really an option for me.
[01:05:19] Speaker A: You're preaching to the choir.
[01:05:21] Speaker B: That's.
[01:05:22] Speaker A: That's all.
All I have to say to that. You're preaching to the choir.
[01:05:27] Speaker B: Well, and there's a bit of embrace your awkward.
You know, everyone is a bit awkward. Like, let it.
[01:05:33] Speaker A: Some of us more so than others.
[01:05:36] Speaker B: It ties in again with having a sense of humor, though.
I've noticed sometimes whenever we make these mistakes. We talked about this concept of perfection before. And if we make a mistake, the world is going to define it as our blindness. That's the reason we also do it to ourselves.
[01:05:53] Speaker A: Oh, we do, Absolutely.
[01:05:55] Speaker B: When we make a mistake, then it's because we're blind that we made that mistake.
Everybody makes mistakes. Nobody is perfect. That's human.
[01:06:03] Speaker A: When I make a mistake, it's because I'm rushing or because I'm a dummy.
And that's the PC version.
But funny thing is now, and it took me a long time to get here, if I make a mistake, I don't even blame it on the blindness anymore. Because it's not the reason. It's because I was rushing or trying to get something done or doing something that I only know a little bit about.
You know, that happens once in a while that I don't know everything, believe it or not.
[01:06:35] Speaker B: That's shocking.
[01:06:36] Speaker A: Yeah, I know. It's shocking to me when it happens too.
But no, it's definitely the perfection is just as much in our own head, especially if we've got. If you've got decent. A decent skill set.
[01:06:51] Speaker B: Part of what we were going to talk about is a little section that we're still kind of defining at this point, which is where we want to drop in little Little tips on Blind Etiquette.
We have been toying with the names. We've not landed on anything yet.
My current like suggestion, because Ed called it tips and tricks earlier, would be for this to be the TNT section of our podcast Dynamite.
That that's not necessarily where it's going to stick. We'll come up with as many as we can.
[01:07:33] Speaker A: Much to my Chicago I'm sure one
[01:07:36] Speaker B: of my main goals is to hurt Ed as much as possible with these names. Just so you guys know.
So let's dive in to tips and tricks.
When it comes to blind etiquette. I thought maybe what we could go into on that today would be how it is that we present ourselves in public and deal with some of these pressures that we've been talking about. You mentioned earlier, people coming up and always wanting to help. A lot of us have this situation where people will dive in. They really want to be of assistance. Often it causes more hardships than it does actually provide help.
One of my big examples of this has to do with whenever we're crossing streets.
Where I live right now, I have had so many instances where people will pull up in front of me and they'll start yelling out of their car that it's clear for me to pass. I've even had them pull into the center of the intersection and start that.
That is incredibly disorienting.
It causes massive issues. It makes us feel rushed if we are not being aware of what all is going on around us. That car may be stopped, but it doesn't mean the rest of them are.
Their noise is getting in the way of us paying attention to the environment.
[01:09:03] Speaker A: So these types of things we're likely timing traffic yes.
[01:09:08] Speaker B: Yeah. And I've had it. If people pull off the road, I'm listening to that traffic as part of my orientation. When they pull off, I lose some of my input and I start doubting whether or not I know what's really going on with the streets around me.
[01:09:25] Speaker A: I was told by an O and M, and this is kind of a little tip. If that happens, turn your back to the road and step away from the curb for like, like four or five steps.
[01:09:37] Speaker B: Yeah.
[01:09:38] Speaker A: Go the opposite direction, and they will hopefully pick up on your cue. Like, no, no, you. You can move. Move it along.
[01:09:48] Speaker B: Yeah, yeah.
[01:09:49] Speaker A: Because I, I, what I.
[01:09:50] Speaker B: What I have done is pick my stick up, step back a couple of steps, shake my head, say, no, thank you, smile, and wave them on. Yeah. And I will not move until they do. It is too dangerous to start going through that.
[01:10:02] Speaker A: I've gone through that exactly in my neighborhood, too, because I kind of live and work in the same area.
And it's really annoying in where I live because there's six one ways in a span of half a mile.
And what they start, one car stops in on the one way, and they're like, you can go. And I'm like, but what about the laying next to you?
That I have no clue what. What's coming or what's going, Because I can't hear. Literally can't hear around your car or your truck.
So, yeah, sure, that's.
[01:10:37] Speaker B: Well. And even when you're using a cane, I've had times where a person will come up and offer assistance. I turn my body to address them to let them know, no, I'm fine. And then when I turn back, I'm slightly off of the route that I was on before. And then the accidents do happen because of the distraction.
So a couple of points on this one.
I have run into more folks here in Montana than I ever have the rest of my life. I moved here about four years ago, and the amount of people who have come up and said, you are the only blind person I have ever met is a stage.
It happens a lot, which blows my mind. Right.
So keeping that in, in our minds that we may be the only example that people see when we go out into public.
There is an added pressure to this, and I will state, it's not fair, it's not comfortable.
It's. It's a very, very difficult position to be in all of the time because not only are you dealing with your own imperfections, but you've now got this added pressure that you may be the Only representative of the people within the community that they have ever met, that they've interacted with. And whatever example you set, it's going to be what that person believes. Blind people are not you as a person, but blind people as a whole or individuals who are low vision or blind.
[01:12:08] Speaker A: Right.
[01:12:11] Speaker B: So ideally we want to use those opportunities to help educate. Now I stated before, that's not fair. Right. That's a lot of pressure every day when you go out to try to respond to every frustrating moment with a smile and kindness. And what I do to remind myself to do that is to also remind myself of my own ignorance. How many times have I been the person who was ignorant? And all I needed was for someone to help me understand so that I could meet my actual goal. These folks that are doing this, they are not malicious, they have no mal intent. They want to help. Right. So how do we turn that moment into them being able to appropriately know how to help if you have the strength and energy in those moments.
I have personally found that a smile and stopping and saying, oh, thank you for wanting to help.
But let me, let me share with you how it is that you could be the most effective in this type of situation. Obviously word it however it fits within the context of that moment. But if you make them a, if you make them a part of the process, if you pull them into the community. There's a trick that I used to, well, I still do with signing receipts.
If you, if someone hands you a receipt to sign and then you say, oh, you want to learn a really cool trick that'll make you look like you're in the know. In the blind community, they almost always love the idea of having a thing that gives them the ability to assist, that lets other people know that they care, that lets people know that they're in the know. And so I'll tell them if you fold this on the signature line, right on the line, then when you hand it back to me, I will have a raised piece that shows me where that signature line is.
I have had, I don't think I've ever had to that approach to inviting them in to be someone who's in the know.
Oh yeah, so that's my tip.
[01:14:33] Speaker A: No, that's, that's a fantastic one.
That is a good one.
[01:14:39] Speaker B: It was really hard to decide for first one. So that was, that was as blanketed in general as I could get.
[01:14:46] Speaker A: Well, you know, well, we'll dive a little deeper into those as we go forward. And I mean we possibly could even take suggestions I don't know.
[01:14:57] Speaker B: This podcast is still developing. It's growing. We're deciding how we want to take this, what it's going to look like. We want you guys to be part of that as well.
The main goal of what we're doing is to try to talk about the people that exist within the community, to share their stories. But we also do want to integrate some of the goings on with MAB the like. We just did the tips and tricks for blind etiquette, how it is that we can function.
So we would love for you guys to let us know if there's something specific you want us to address.
If you have any of you are willing to be interviewed in the future, if you have some concepts that would help us to sort of develop this to best fit our community, please contact myself or Ed.
This has been more than blindness. The people behind the label. You guys have a great month and hopefully we'll see you next month.
