Intro, over music:
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:
Welcome to the Nation's Blind podcast. My name is Anil Lewis and my co-host today will be-
Chris Danielsen:
Chris Danielsen, not Melissa Riccobono, unfortunately. But I'm always glad to have the opportunity, even though I hate it when Melissa's not here, I'm always glad to have the opportunity to work with you, Anil, to get another episode out there.
Anil Lewis:
You're a celebrity in your own right, coming from the original team of our podcast as it grew, so always good to have you co-hosting, Chris.
Chris Danielsen:
Well, thank you very much and good to be with you. And we are going to talk today about MrBeast.
Anil Lewis:
What a name.
Chris Danielsen:
Yeah, I know. And if you don't know who MrBeast is, we are going to tell you. I don't know why he calls himself MrBeast. I consulted the crack research department of the Nation's Blind Podcast, but they didn't come back with an answer in time for the recording of the episode. But he calls himself MrBeast. And the real issue that we're going to talk about is how do we feel about efforts to "fix" blind people or cure blindness or prevent blindness and eye disease? And how do we feel about how some of that is done? Because I think it's an important issue. It comes up from time to time.
Anil Lewis:
So before we go any further, Chris, let's give our listeners just a little piece of the beast.
Chris Danielsen:
All right, let's do it.
MrBeast (narrating):
Our next patient is Charlie.
MrBeast (to Charlie):
You're not able to read any of this text on the TV?
Charlie:
No, it's an E or something, I think.
MrBeast (almost whispering):
He won't know he won ten grand until after his surgery. I can't wait to see his reaction. 
MrBeast (narrating):
Charlie sees everything like this and it's made him and his family's life extremely difficult.
Charlie:
I was a cashier and my eyes were getting so bad that I couldn't see how much money to give back. I just want to get my vision back so I can go back to work.
MrBeast:
You're going to be really happy after this surgery.
Charlie:
We'll see after. 
MrBeast:
Trust me, you will see.
MrBeast (narrating):
When patients go into surgery, there's a chance that they can get their life back. And for Charlie, if the surgery goes well, he can go back to work. 
MrBeast (to Charlie):
What's it like?
Charlie:
Oh, wow.
MrBeast (narrating):
All right. Let's see if he can read it now. (to Charlie) What does this say?
Charlie:
You just won ten thousand dollars.
MrBeast:
Here you go.
Charlie:
Oh my gosh.
(Background voices, inaudible)
Charlie:
It feels good. I didn't think I would ever be able to see again.
Charlie’s wife:
Thank you all so much.
Charlie:
I don't want to lose none of it.
Charlie’s wife:
I'll hold onto it.
Charlie:
Oh no, I'll hold onto it.
Anil Lewis:
I have to admit, this is really kind of a difficult conversation to have because although in the way that the video presents it makes it very uncomfortable for me, I think that it's important for us to recognize that the experience of these individuals who, due to whatever the procedure is, may regain some of their sight is real for them. So I don't want to diminish that by any means, but there're different pieces of the video that again, really make me uncomfortable.
Chris Danielsen:
Well, sure. I mean, I think there's a reference to getting your life back or going back to work. "You can go back to work tomorrow," I think he says.
Anil Lewis:
He asked one guy, "How long have you been unable to work?" He's like, "Four months." And again, leaving it out there because he couldn't see, he couldn't work. And I think a lot of people missed those. And it's not that I want that to be amplified, but I do want that to discontinue, because whether people really acknowledge it or not, that places a perception within someone's mindset that they may not even notice that they kind of made part of who they are. When you see that, you're going to be thinking the next blind person you see, well, they can't work.
Chris Danielsen:
And that's what really makes this difficult. There was discussion of this on social media and he got some criticism mainly from people who said, "It's great that you can spend some of your money to help a few people, but we really need to be able to help more people." Sometimes people talk about inspiration porn. People were talking about this being charity porn, the idea that you can't just do something good, you've got to display it for everybody so we see what a great person you are. And I don't really have a problem with that. I mean, he wants to show what he's able to do with money that he's made, apparently as a YouTuber. I don't know how he has made all this money.
Anil Lewis:
And then of course, I got to believe that if this really is an initiative that he's promoting, I mean pushing it out there may actually get more people to donate to his cause to help more people. I'm not discounting. I have retinitis pigmentosa, the foundation Fighting Blindness continues to do research to try to find a cure for it. In the beginning, that's all I focused on. I did not live my life because I was too busy trying to raise money because I felt that the cure was going to happen. And that was over 30 years ago. And if I would've just been in that space, I never would be where I am. I would never be a father. I would never be working for the Federation because I would've just been sitting waiting on a cure. And I think that's the hard part. But do I dismiss the fact that the Foundation Fighting Blindness is raising money for that purpose?
No, I actually donate to the Foundation Fighting Blindness, but I'm not going to wait or put my life on hold or be used in a way that is the poster child for raising money for that cure. I think that's just my personal preference. This gentleman here, if he wants to raise money to pay for surgeries that restore people's sight, I mean, I know that that's possible. I've seen people with the cornea transplants that have a great degree of increased vision. I don't know. I haven't tested or really researched the efficacy of his treatments. But I mean, if it's helping people, let it help people. Let's do it in a way that doesn't communicate that blind people don't have capacity.
Chris Danielsen:
Well, exactly, Anil. But just to go back and make this clear to people in case you didn't pick it up, he's funding cataract surgery. What he did for these thousand people was have their cataracts removed, which is a simple operation and it's real, and it's something that people can benefit from and that can be done and that will. We don't have a cure for RP yet, and we don't have a cure for a lot of eye diseases, but cataracts are something that can be treated. And I guess I would say, "Okay, if it is something that can be treated …” some people struggle with this. Because it's like, "Okay, but we say that in the federation that blindness is no big deal." So doesn't that mean that we don't want people to feel lesser because of blindness? Which is true, but then they say, "Are you saying that people should not avail themselves of medical correction when it's available?" And the answer to that is no, we're not saying that.
Now, there may be reasons, and we'll talk about that later, there may be reasons for a particular person not to choose medical intervention. But yeah, if you think it will work for you, and especially if it's something as straightforward as cataract surgery, if it's not risky, if it's not experimental, why not? I mean, we're not going around telling people to poke their eyes out. That's not our attitude toward blindness.
Anil Lewis:
The experimental piece is important, right? Because again, when I lost my sight... Well, let me say this. The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. I know that because I have been immersed in the philosophy and received the training. But in 1989, when I went blind over the weekend with retinitis pigmentosa, no, I did not know or believe that. If someone would've came to me then and told me that, I would've told them where they could go. So it is an evolution in growth. It's just like an infant doesn't believe or know that you can do all the things you can do as you mature and grow as an adult. So I'm not diminishing the lived experience of those who have lost their sight and have not really come to understand the alternative skills of blindness that would allow them to maintain their independence, the positive self-concept and problem solving skills that you can acquire in order to reduce blindness to the degree of nuisance that we know it can be reduced.
With that said, I think that there's a balance that we have to find as an organization, but also more importantly, medical professionals to make sure that blind people in that particular moment are not exploited. When I was coming up through the Retinitis Pigmentosa Foundation in the day, there was some surgical stuff that was out there. I'm not going to go into the details of it, but people who were really desperate about getting their sight back really took some risks in some of these experimental opportunities to try to restore their sight, and they were not successful. So I think that in the instance of experimentation toward working on a cure, I think it's even more important to make sure that blind people recognize that blindness is not what defines their future. They’ve really got to go into that recognizing that, okay, even if I go blind, I'm going to be all right, but I am willing to participate in the experimental treatment.
Chris Danielsen:
The point is it should be a choice though, and it should be an informed... We talk about informed choice in a lot of context and what you have to be informed about, and I'm not knocking the medical profession, but what I worry about is that the bias of the medical profession is to say, "Oh, well, we should try this medical intervention," and to overplay the effect that medical intervention might have. And if you're sitting there and a risky or even just painful and possibly unsuccessful-
Anil Lewis:
Is being presented to you. And they're saying, "This is all I got. Without this, there's nothing. You're going to go blind and your life will be over that." That's just-
Chris Danielsen:
Yeah. Go ahead. Sorry.
Anil Lewis:
No, I took over your statement, but it is truly irresponsible.
Chris Danielsen:
It is, and we struggle a lot and we try to work with medical professionals. Some are more receptive than others, but we try to tell them there is a point where you can say and should say, "You need to at least know that it is possible to live with your vision lost, and then you can make a decision." And it's a hard decision, and it's hard to know what any of us would do really. I mean, look, I've been blind all my life. If there were a medical intervention that could give me sight, it wouldn't even be restoring my sight because I've never had it, I don't know what I would do because I've been blind all my life. I'm used to it. Having sight would entail a lot of changes for me, and it might not even work out. We know from the lived experience of some individuals and studies that have been done that if you have never seen before and you suddenly get eyesight, that doesn't mean that you wake up in the operating room and are immediately able to look at objects and recognize them.
Anil Lewis:
Because your brain has to learn all of that different information. So you brought up a really good point because I know that there's some members of the NFB that say that no, if they could see tomorrow, they unequivocally say they wouldn't want it. I personally, if I could get my sight tomorrow with minimal risk (laughs), I probably would. But I know that my quality of life would be different. I don't necessarily say it's better. There's some things that would make my life easier if I could see them to get them done. But I learned to enjoy some things more that I would not have without sight. There's a little give and take there, but I think that what's important is this is another example of how different people within the organization have different perspectives. But the National Federation of the Blind is big enough to have all those perspectives within our family because neither of them defines the overall belief of the organization. We have the space that allows those voices to actively participate in our movement.
Chris Danielsen:
Well, exactly. That's the important thing. Going back to something I was mentioning earlier, quality of life is important, and people sometimes have to think about the quality of life that they might get with more eyesight versus the quality of life that they have now, and the risks and the quality of life that they might have if they go to another surgery and it's unsuccessful. A couple of years ago, our Kenneth Jernigan scholarship winner was a young lady named Lizzy Muhammad-Park. And Lizzy in her speech talked about having several medical interventions when she was a small child, a toddler, to try to correct her eyesight. And at the age of five, she finally went to her mother and said, "This just hurts too much. It's too painful every time. And you're talking about me having another surgery and the last one was so painful, and I've had these surgeries and things are not getting better or they're only marginally getting better, and I just don't want to do this anymore."
And there may be people that disagree with that. But for Lizzy, that was a choice. And the interesting thing is that her mother said, "Okay." Because it would've been very easy for her mother to say, "You're five, you're not old enough to make this kind of decision." But she didn't do that. She said, "You know what? I'm going to listen to my child. This is hurting my child. She's not finding benefit in it, at least not compared to the pain that she's experiencing and I am not going to continue to put her through that."
Anil Lewis:
And that had to be hard for her mom. I know that as I became an adult and started having real conversations with my mother, because my older brother and older sister lost their sight much earlier than I did, they were in elementary school, high school, but we had that discussion and she says it was the guilt. She felt somewhat guilty that it was her fault, and that's why she continued to pursue all those interventions and that kind of thing. And it wasn't until she got to a place where she just kind of realized that there was no real forward progress being made with all of the stuff that she was doing, that she then refocused her energy on making sure that, "Okay, well if the blindness is going to come, let's make sure my kids are prepared to live their lives."
And again, just as an aside, I think that's really what's important within the Federation. Our National Organization of Parents of Blind Children, that's such an essential piece. And there's so many parents out there that need to be networked and connected with that group of parents because then they can share those stories and they don't feel like they're out there alone. And they can recognize that it's not their fault and don't have to worry about making decisions based on any unnecessary guilt that they're feeling. And they can really get an understanding as to what is that proper course that they can set for their children so that they can be successful.
Chris Danielsen:
Exactly. It's such an important thing. Our central message is you can live the life you want. Blindness does not hold you back. And that is true. It is proven by the lived experience of blind people. Now, that doesn't make it wrong for you to think about an intervention that may give you or restore some eyesight, but you have to make the right choice for you, and you have to know what the options are. You really have to understand as a parent or for yourself what it is that you're potentially gaining, but what it also is that you're risking or possibly giving up.
What we say to MrBeast and to the Foundation Fighting Blindness is by all means, raise money to see what you can do. There are preventable causes of blindness, and by all means, let's prevent it when we can. Let's not have people needlessly become blind. Let's not have people not avail themselves of things that will work if they want to. But let's not say that a person's life is over or that they only really have a life if they have eyesight because that's just not true. And I can hear people saying maybe on the other side of this, "Well, that makes it harder for us to raise money." And I'm like, "Well, maybe. But I think everybody understands that a lot of people would rather have all five of their senses than only four of them."
I think it's an understandable impulse, and I think people will support that, but don't hurt people who do have to live with blindness because there is not a cure for every eye disease. I think in the video, he talks about blindness being a disease, and blindness isn't one disease, and that's something a lot of people don't understand.
Anil Lewis:
Different diseases cause blindness, and I have to go back and correct. I don't want to put the Foundation Fighting Blindness in that same space where Dr. Beast is. I think that our work and conversations with the Foundation Fighting Blindness have helped them to kind of evolve because I know that in the beginning it was after a cure, but now I see more and more they're focusing on making sure that they amplify the importance of the adoption and acquisition of alternative skills of blindness, etc. So hopefully we can do the same with Dr. Beast. Continue the work of funding people who have an ability to regain their site, but let's do it in a way that respects individuals who you are not able to help.
Chris Danielsen:
And just as you're rehabilitating the Foundation Fighting Blindness. We had a visit, I'm not going to name them because we're not officially... But we had a visit recently at the NFB Jernigan Institute from a major medical institution that does eye surgeries and medical interventions. But they also wanted to know, how can we work with you? What resources can we make available to our patients who cannot benefit or can't benefit as much from medical intervention? What are the things those patients need to know? There are medical professionals who are trying to learn those things. And the Foundation Fighting Blindness has evolved. I've seen some of that myself. And you're probably-
Anil Lewis:
There's still more evolution though. I'm not going to-
Chris Danielsen:
Yeah. No, not yet.
Anil Lewis:
It's yet to evolve. But yeah.
Chris Danielsen:
But anyway, so that's where we'll leave things. So no, the Federation does not oppose curing blindness in those circumstances where it is curable or correctable to a certain extent. That is a decision that everybody has to make for themselves. But we want it to be a decision that is informed by the truth about blindness, what we know to be true about blindness and not the myths around blindness.
Anil Lewis:
One of the real definite statements that needs to be made is, no, we don't raise money to support those efforts. There's a significant amount of money in that area. The medical model is a fundraising bonanza. If we were able to raise money like that, I mean, the change that we'll be able to make in the lives of blind people will be phenomenal. So yes, we focus on raising money to make sure that blind people realize that they can live the lives they want. And that's true, and that's for real. So if you, like me, support the medical research, that's fine. But I have to be very clear, I put more money into the Federation than I do in my donations to the Foundation Fighting Blindness. And I hope that there are others that recognize that we unfortunately disproportionately generate less revenue than some of those medical opportunities simply because they play on the heartstrings of people and they play on the fear around blindness, et cetera.
We want to make sure that the positive aspects of blindness are promoted in a way that also create that type of fundraising. That's why I'm really excited about all the PSAs that we're putting out there. Because I think that once society starts seeing in a very progressive way successful blind adults out there living in the world, they will recognize that, wow, this really is something that's underfunded, underrepresented, undersupported. And hopefully recognize that with that same commitment that they're giving to the medical model, they could really create a paradigm shift in the lives of millions of blind people today.
Chris Danielsen:
And speaking of that, at the risk of sounding a little too mercenary, here's a little message about one of the ways you can make that commitment.
Promo, over music:
The organized blind movement has joined the Lyft Round Up and Donate program so you can contribute every time you ride. Lyft will round up the cost of your ride to the nearest dollar and contribute the difference to the National Federation of the Blind. In the Lyft app, simply go to the menu, navigate to donate and select National Federation of the Blind from the list. Please encourage your family and friends who use Lyft to take part in the Roundup and Donate program to help blind people live the lives we want.
Chris Danielsen:
So we hope that you will consider supporting the National Federation of the Blind, as has just been discussed. And we also hope you'll continue to listen to the Nation's Blind Podcast and let us know what you think about this issue, what you think about the subjects that we talk about, and what else you would like to hear us talk about. Maybe there's another video on YouTube or something else that you saw about blindness that got you really fired up. Or maybe there's a really positive portrayal of blindness that you want to talk about or somebody else who's doing positive work in this space. Or maybe there's a totally different topic that you would like for us to talk about.
Anil Lewis:
We're open. As you can tell by these last few episodes, we're not afraid to talk about any topics, so bring it on. Bring it all.
Chris Danielsen:
Exactly. And bring it on by reaching out on social media @NFB_voice on Twitter. Search for National Federation of the Blind on Facebook. Those are a couple of ways that you can reach us. And-
Anil Lewis:
Give us a call at 410-659-9314, extension 2444. Send us an email. The email address is podcast@nfp.org.
Chris Danielsen:
And that's podcast without an S. Singular. Definitely reach out. We'd love to hear from you. We'd love to hear your voice. But if you're more comfortable sending an email or reaching out on social media, then by all means, do that. And until the next time we are able to join you to discuss another topic, remember, you can live the life you want.
Anil Lewis:
Blindness is not what holds you back.
Outro, over music:
We'd love your feedback. Email podcast@nfb.org or call 410-659-9314, extension 2444.

This transcript was exported on May 10, 2023 - view latest version here.



mr beast podcast proof 2 promo added (Completed  05/10/23)
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