Albinism and the Built Environment for Low Vision with Philip Mason

Episode 15 June 13, 2020 01:05:22
Albinism and the Built Environment for Low Vision with Philip Mason
Freewheelin with Carden
Albinism and the Built Environment for Low Vision with Philip Mason

Show Notes

Today, June 13th is International Albinism Awareness Day and joining me today is a force of nature Philip 'Phil' Mason. Phil dives deep into being Black with Albinism and the underlying white privilege that is often associated with it. Phil describes his dream house having low vision and takes a firm stand on designing a world that is inclusive for all. When this episode was recorded, Phil worked for the Disability Rights Fund a grant making collaborative between donors and the global disability rights community that empowers persons with disabilities to advocate for equal rights and full participation in society and speaks to the work he previously completed along with the celebration day You can connect with Phil on Linkedin Transcript:

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Episode Transcript

Speaker 1 00:03 Or aren't disabled. It is society. And the boundaries that we put up as far as society that does, April's a person. So no one inherently is, you know, to say what? And that just stands out a lot to me. So what barriers are we creating for others? Speaker 0 00:18 Welcome to Freewheelin with carton. This podcast shares stories of people with various disabilities and shines a new light on accessibility topics. Our goal is to knock down barriers so we can roll through life a little easier and build a community to do this together. Please rate and follow this podcast or text card at (470) 588-1215. With comments and suggestions. We welcome you on your journey towards inclusion for all. And now your host Carden Wyckoff global disability advocate and wheelchair warrior. Speaker 2 00:55 Welcome back to another episode of freewill and with pardon? I have Phil up joining a few virtually. Hi, Philip. Welcome. Speaker 1 01:04 Hi, thanks for having me. I appreciate the opportunity to join you on Dubai. Speaker 2 01:08 I'm so excited to have you here today. And today we wanted to talk about a topic that was near and dear to your heart, and also a topic that you work endlessly to help raise awareness for. And that's albinism. So talk to me about it, Speaker 1 01:23 Definitely. Well, I think it's one of those things that a lot of us who have different disabilities that we get pushed into becoming advocates for our own disability. So obviously most people who see me know I have albinism right away. I'm an African American with blonde hair, gray eyes, Pell skin. So it's complicated. Speaker 2 01:46 And who would have thought whatever does anyone ever say? Is there any such thing I didn't even know, there's such thing as a black albino. Does anyone ever ask you that? Speaker 1 01:55 It's usually the other way around on my experience. Like people don't realize albinism there's, you know, Caucasian people of albinism or Asian people, or, you know, you fill in the blank. It's one of those things that, and I had people from all over the world at the same time. I was kind of weird. Cause I do say I'm lucky too, because I'm a black guy who gets white privilege. So most is out a little bit. Okay. Speaker 2 02:21 Well tell me a little bit about that of black person who gets white privilege. How do you feel when that's happening to you and can you kind of see both sides to that? That's a very interesting topic. Speaker 1 02:33 A lot of times early on, I really didn't know this. Um, but going back and thinking about my childhood, some of the conversations that even my mother had in front of me, and maybe like when I was five or six were random strangers, which is telling like you kind to make sure you take really good care of that one, or you've got to make sure that one's taken care of. I also relate a lot with Trevor Noah. He wrote a book I'm about growing up colored he's biracial in South Africa and how he was treated differently by his peers and other adults who ever saw him. And, you know, I just keep seeing this as like that happened and even find out that some people who I knew on professional on a professional level who did know as black at racist tendencies, and they will say certain things around me, I was like, wow, to the speed of time where I burst their bubble. Speaker 2 03:24 Wow. That's pretty intense that you're kind of getting that. Do people assume that you're white? Speaker 1 03:31 I would say it really depends on where I am. So in the U S I would say maybe 50, 60% of people just assume I'm white more so now that I did to cover up my nose and my lips, my eyes hashtag Corona, right. It really depends on the community. So within, I do a lot of things in the low vision world, cause a lot of people about aneurysm have some varying degree of visual disability or issues related to it. So my community albinism is quite Thomas, pretty much anyone who knows any group or society, people who are blind or visually impaired there's people with albinism, always there and associated with it. Speaker 2 04:19 Got it. And let's speak to a little bit more about like, what is albinism for those who don't know, describe some of those common characteristics. And like you said, the visual impairments. Speaker 1 04:30 Okay. Uh, that is really good question in the easiest way to talk about it. It's a person who typically has reduced pigment in the skin hair eyes. And I say this because it's very integrated. So it's a lot of different types of albinism. I have friends who, you know, they didn't get diagnosed until they were just entering elementary school. I have other friends who are average American, who just always were referred to as being light skin who had like Sandy Brown hair and more of an almond complexion, but no one just has never made the diagnosis a typical way that mouse I person can typically spotted is most people of optimism have some level of a visual deficit and is usually paired with nystagmus. So if you look in my eyes, you'll see, I have pendular to stagnant. Which just means my is a shake left or right. All the time for the most part. Speaker 2 05:27 Okay. Does that affect you focusing on anything or is that just the year, the way your eyes are moving? Always Speaker 1 05:35 It's the way that my eyes are moving pretty much always. I didn't know, until someone tells me and I try to catch it in the mirror. When I try to catch in the mirror, I can barely see it. It gets worse when I'm tired. A lot of my friends like, Oh, you're sagging. This, this is going crazy that you're stressed or tired. Speaker 2 05:54 Oh, okay. Well, that's kind of nice. So yeah, that's kind of a telltale sign, right? For your friends to look out for. If they see <inaudible>, you're really stressed or tired, that's kind of a telltale sign. Speaker 1 06:06 Other end of the spectrum is most people who have pendulum nystagmus, if you drink or have alcohol, it slows down, which I was calling. Some of my friends were in med school and she just did experiment with her friends. Like let's track to see how, at what point does my alcohol needs to be Speaker 2 06:28 Honey. So like you said, that it really doesn't affect your everyday vision. It's just rapid eye movement that's happening. And you're not notice nothing's different in terms of how you focused or anything. Okay. That's interesting. Yeah. I mean, I just don't know. This is good to know. Are there any accommodations that come out of that either through low vision? Speaker 1 06:50 Well, I think that's pretty much what it really comes down to, you know, having this conversation with you where are apart, but I'm staring at a 27 inch screen that zoomed in. I can see everything with great clarity. There's other things that I do in my office, um, where I removed lights, fluorescent lights, give me headaches. Also I avoid bright settings because I fatigue with my boss from time to time. I remember there was a conference down in Cancun and I'm sure you would love like, Oh, I'm going to Cancun. Great. And I just clicked. I was like, is this like a joke? You put a sin, they'll buy it all down to Cancun and see it takes till he gets burned. I made sure I had a lot of like clothing that had an SPF factors in it. Just small, different things and a lot of things that I just don't even notice anymore. Cause it's just the way I do things. I think that's what a lot of people with different disabilities learn to do over the years. It's like, this is just the way I do it. Speaker 2 07:55 Right. Yeah. And it may be different for someone else, you know, the way I do getting the way I get dressed, maybe different from the way someone else gets dressed or no, whatever it is. So we all have our own quirks and perks that allow us to thrive and just do we need to do, to be successful and continue on with our day. Speaker 1 08:15 Exactly. I have a lot of friends who don't have visual impairments who are designers may have seen the way that I have my computer screen set up in our monitor arm. Like, Oh my God, that is so great. You have good posture that way. I'm like, Oh, you can do it too. It's it's that old saying in the community of adapt for one and extent too many. Speaker 2 08:39 Sure, definitely. And so with the low vision, what is your preferential font, height and width and spacing? I was, I was interviewing someone who had low vision, just if you have episodes ago and it just like totally was so eyeopening thinking about different lightings and going from light to dark and natural versus artificial lights. So what, how does that affect you if you want to speak more to that? Speaker 1 09:07 So again, it's just, I try to reduce the light as much as possible. Even on my screen, I have inverted colors. So I read white text on a black background. Typically when Apple and Google Chrome came out with dark mode, I was super excited. I love dark mode, everything. Exactly. So it's a huge benefit that just made life so much easier, even, you know, I think one of the advantages I had when I went through my undergrad is I received all my textbooks in PDF format. So I wasn't carrying around big textbooks and I was able to manipulate while all my classmates were searching through their highlighted notes. It was using control my undergrad experience. You know, I finished back in 2006 with a lot easier than most other people back then. Now it's more common. Everyone is used to having E textbooks and things like that. So that was a huge benefit for me. But even now I'm living in Boston. And when I used to commute to, and from work, I would have my, I would listen to books or papers with voiceover on. So even if it wasn't needed audio book, I would just still listen to it while I'm walking to and from work. So try to be, you know, efficient and effective while doing my morning commute. Speaker 2 10:33 That's great. The podcasts, the listening to books, the control F I mean certainly had an upper leg during your undergraduate career. I'm sure being able to control F everything. What are some of other accommodations that either you have used or that you've advocated for the companies that you've worked or, or other places that you worked with? Speaker 1 10:59 That's a really good question. I think because of my exposure, every time I'm involved in anything, I think about universal assessability, Speaker 1 11:06 I think about having, you know, something as simple as a document or a PDF assessment, which is someone who uses a screen reader. I try to make sure every time we have an event that there's a sign language interpreter there and available. I'm super excited now that Google Hangouts has artificial intelligence that does live transcription. Yeah. Even though it's not great. Last time we checked it at my office. Yeah. But one of my colleagues found out that it that's out swear words. Well, that's not fair change. Exactly. Okay. You know, there's a lot of different things that just comes to mind. And a lot of, I think of is just universal design. How can we design things on the front end better so that people don't require accommodations, you know, bye. Do we need to have multi-story buildings or steps into a building? Why can't that just be part of the architecture plan right away? And some things kind of go hand in hand, I think about why are we still using paper? It is 2020, Speaker 2 12:20 Not only save trees, but also just from an accessibility standpoint, Speaker 1 12:24 Exactly. You know, one stone, we can save trees and we can just make things a lot more accessible for a wider audience. So it kinda just reminds me of one of the things that really stood out to me when I got more involved in the global disability rights world was people who aren't disabled. It is society. And the boundaries that we put up as far as society that does, April's a person. So no one inherently is, you know, to save what, and that just stands out a lot to me. So what barriers are we creating for others? Speaker 2 13:00 Oh man, that's a great quote. People aren't disabled. It's the barrier that we create. Humans create an accessibility. Speaker 1 13:11 Well, if you think about it, if you go to some countries in the global South people in the U S need their glasses to be able to function. Sure. If you are living in some parts of the global South where you can't afford glasses or cataract surgery, you are by default disabled. Sure. Now, having the privilege we have here in the U S that is the case, but so many instances like that happen around the road and even still here in the U S Speaker 2 13:41 Yeah. It's nice that we live in the United States, but also it's, you have to think about others that aren't as fortunate. And I know there are so many companies out there now that are doing like a one-to-one you buy one, they donate one, and those are fabulous business models as well. So always making sure that they're giving back to those who are less fortunate or don't have those services available to them. Speaker 1 14:09 And I think that's one of the key things that I love. Our culture is changing. We're becoming more, we're having more of a global mindset and thinking about others and really understanding our privilege. You know, I'm a black guy with a disability. Who's talking about his own privilege and having the agency to understand that, which a lot of people, you know, anticipate that I'm a person in need, or I need a helping hand. And that realize I have the power or the ability to help someone else. Speaker 2 14:38 Do people ever treat you as non-disabled they're like, or they doubt that you have a disability just because you are colored differently. Speaker 1 14:48 My family, I bet my brother. I think that's the kind of great thing, probably even in your family, no one really considered you have a disability. Sure. You know, even among my friend groups, I have a lot of friends. Mmm. Friends were a lot of people of different diverse disabilities, just with different things. I'm involved over the years. And you know, I was having a zoom talk with one of my friends here who was a Paralympic swimmer. Who's missing part of her arm and we're cracking jokes by her arm. And she was cracking blind jokes. Like how long did it take you to realize I was missing the arm, getting that community in thinking to the point where those who are close to you understand your disability really isn't a disability, I think is important. Speaker 2 15:39 I think humor is a common theme. And so many people with disabilities. I find that in all my interviews, people kind of always just at the end of the day, they just go back to humor. Cause that's what keeps them going. Speaker 1 15:54 Yeah. And it really shapes the way you think about things. I think back about, I want to say it's probably three years ago now where I broke my leg and I had to utilize a wheelchair. I coach a sport for blind, visually impaired athletes called goalball, Where is a very physical sport play three on three. Alright. In the gym over was all of our wheelchair basketball athletes. So you have me, who's probably two weeks out of surgery rolling in on the wheelchair and all the little triathletes. Like I just, Oh, like, just leave me right now. Speaker 2 16:32 Well, what was that life kind of though, for you to experience a temporary disability that had you use a wheelchair? How did your lens shift? Speaker 1 16:43 Aye. My lens didn't shift that much. I was more mindful of, I can't complain this temporal, this change I'll be out of this wheelchair soon enough. And I think having that exposure and have lots of friends who utilize wheelchairs like this, isn't that big of a deal. I go through my own grieving process. I can't stand in a shower right now. Speaker 2 17:09 Right? Yeah. You have to get a seat or something. That's what I use. Speaker 1 17:13 Exactly. So totally. I had a lot of friends who utilize wheelchairs and all these other things. I was able to call upon them and some of them were able to share some of their equipment with me. I'm like, this is cool. This is great. I feel guilty. You know, the first couple of nights and bad, like this sucks. Speaker 2 17:31 Sure. Yeah. I think we all go through that sort of grieving process or doubting that you have something that's different than you than what you would want to have. Speaker 1 17:42 Exactly. I think what was different was I had guilt lady too. It just changed my perspective. I was thinking I was able to get over it right away and having that friend network, um, you know, was a huge support. Speaker 2 17:58 Well, that's great. It's good to always to have that supportive system and Even thinking about other community groups that you're involved with. Are there other places that you seek to build that community, other either it's in the albino community or just in general? Speaker 1 18:15 Well, circling back to a conversation that we were having before is, well, it's even something that my current organization, the disability rights fund works on a lot. It's really focused on intersectionality. I'm, you know, I love our executive director, dynamism, Harrison. She calls out the women's rights movement for not being assessable when they are having meetings. You know, I think about not too long ago in Indonesia, the women's rights movement there was fighting for women's rights over, um, abortion. And they gave us like, well, you know, when we're disabilities, their parents should choose. And they came to that conclusion because there was no women with disabilities at the table. Wow. So it's, there's so many diverse communities out there and it's, how can we make sure it's inclusive of everyone and diverse. It's really important to make sure adjustments are diverse. And even now when I'm going to meetings and talking about disabilities, I noticed right away that a lot of times it's led by white men, white men, or even a lot of times it's in the disability community as a hierarchy. A lot of times it's led by either those in wheelchairs or those who are blind. And we also have many people with psychosocial disabilities or that many people who are deaf leading outside of their own unique communities to represent the community as a whole. So it's so much more needs to happen and to grow and to change. So we're cognizant and thinking about that and trying to figure out how we can get people together. Speaker 2 19:58 Yeah. That disability hierarchy is still so true. And I don't know if you watch the Netflix movie crib camp, the disability revolution recently, but it talks about the disability hierarchy and historically all the polios have always then on top. And then at the bottom, you have people who are generally nonverbal or extremely physically, mentally disabled in any sense. So how do you see yourself in that hierarchy or do you even identify as being in that hierarchy? Speaker 1 20:33 So I think that's where I kind of have the privilege. So, you know, to be human, I love her to death, me and her serve on a board together, um, who was featured in that show. But you know, she's the archetype of how people wheelchairs were leading the disability movement for such a long time and got us to where we are. But then if you look in a lot of laws, a lot of it changed, you know, in the seventies and eighties and nineties, where a lot of people who are blind work, leading the disability movement, you know, from the work of the national Federation of the blind, the American foundation for the blind. And to be quite honest, like I benefit from it allow the interpretations of the new laws are inclusive of those who are blind and how to accommodate for them. I'll ask them to order laws, which I'm dealing with right now with the fair housing act. Speaker 1 21:25 But I'm buying a house as being built currently in the community. And I'm asking for a lot of different accommodations to be included in the house. And a lot of the texts is written like, Oh, grandpa ours, or having something tight, which is helpful for people in a wheelchair, but it's like, can I get dimmable lights that are LEDs? Will you tell for me? Or, you know, just small things like that. Okay. Um, even things I still have learned and talked to my friends about of having countertops are just all one solid color. So I can spot something on the countertop right away. Well, because I live in Boston and spaces, luxury, if you will, at times get what I have. If they do have a washer and dryer they're staff, I cannot see you on the top machine. The thing is the same issue for a lot of people who have mobility issues as well. But finding devices of like, Oh, this dryer, I can control my phone via wifi. So I'm still learning. I'm still growing. But I see my position is like, I've been very privileged with the new laws because it really does encompass and care about those who are blind. Awesome. The older laws on the books, like the fair housing act was like, is this applicable for me? Speaker 2 22:42 Right. Yeah. I think a lot of ADA does speak to just wheelchairs specifically. And it's interesting to hear those accommodations that you're asking for in your house. So I'm thinking about dimmable lights. That's something that you're interested in countertops that are of a certain color. What other things is it like high contrast, different paint, colors, fewer windows. I don't, I don't know. What is it that you're looking for? Speaker 1 23:08 There's a lot of different things. And even one of the things back in my head, I'm like, well, I don't need this, but this might be a nice to have feature. Speaker 2 23:16 Well, tell me your ideal environment. What's your ideal built environment for your house? What would be a perfect dream house for you? Philip Speaker 1 23:25 Dream house is maybe windows that were smart windows that I can dim and control the amount of light that came in from the windows. Cause hello windows. I just don't like the sun. That's a big difference. You know, I often I host a lot of my friends who have disabilities. So I always think about like, can they use my restroom? Can they enter my house? Unfortunately couldn't afford to have anything at ground level, but making sure, instead of having the steps come in from the side, the steps are coming directly into the house. So rent can be installed. So my friends can come visit me. But thinking about myself, nice to haves. I saw that one company made a faucet that connects with, um, Siri and you guys a poor one cup of water or pour two ounces of water. And that would come out. The faucet of like is nice. And if I can afford it, I'll have it. Speaker 2 24:22 Technology is so cool these days. I didn't even know. I don't have anything smart in my house. So I'd need to get on that. I know that's so funny too. It's so funny. Like I work in technology and I don't own a single, the only thing that's smart in my house is my cell phone and my computer. I don't have any Alexis, none of that. Speaker 1 24:43 Maybe you just want to turn it off. So you're done thinking about work. Speaker 2 24:46 Yeah. It's so funny. I go over to my brother's house and it is like all decked out. And like, there's like five Alexis in his one bedroom condo. And he has like different colored lights, any names, every light is a different color. All right. Every light is a different name. And he goes, Alexa, turn on Alfred. And it was so funny and that'll turn on Alfred. It won't be like set Alfred to sunset mode and it'll like, dim it to like this like red, cute colored light. He has different colored lights in his house. I'm like, that's, that's a lot. Speaker 1 25:22 Well, some of those are even really helpful. Um, I think most of my friends who are completely blind and just for safety issues, a lot of times they don't know if the light is on and off. So one of my friends back I'm originally from Milwaukee has their front porch back porch light to just turn on at sunset and turn off as sunrise. So always have some type of light around the house. You know, luckily we live in a day and age where everything is just changing so quickly. So fast. I think about even my wife, she has a couple of things that she loves that were incorporated into the house as well. And it's kind of low tech, but it's the temperature of the lights. You know, some lights are more yellow and some are more blue, you know, albinism too surprisingly. But that's something that is really important to her. Speaker 1 26:12 Then know, I think another small one that a lot of people don't think about is we're making sure that our stove has front controls because so many times when I'm cooking on a gas stove, I have to mean over the burners to see like, okay, isn't safe, just small things. We went through a list, um, and with our purchase and sale agreement, we actually did the fair housing act writer so that our builder isn't charging us a premium to get some of these features. They're just charging us difference in costs. So they had certain thermostats already that they chose. And instead of paying, give me the full, you know, 250 bucks for a nest thermostat, they're just going to charge me the difference to think is fair. Speaker 2 27:06 So what is this fair housing, right? Or that you got, is that something that you can, where do you find that Speaker 1 27:14 Privilege? Cause a lot of friends who nice, well, it's one of those things in the black community. It's, there's too many blind lawyers is one of the biggest jokes, no Daredevil. And I think part of the reason why the blind superhero as a lawyer is because there are too many blind lawyers out there. It's one of those careers that, uh, many people have paved the path and that's a good career pays well. So I called my friend who has no law firm like, Hey, I want to do this. He's like, sure, make a contract for you. You can toss it into your purchase and sell agreement. Like perfect. Speaker 2 27:56 So it's as simple as getting a lawyer and spending up a contract So that the builder that you have, doesn't charge you an insane amount of money just to get housing accommodations. Speaker 1 28:09 Exactly. Cause you know, hearing that, I didn't even know that was a thing I keep hearing. There's so many rich people with disabilities out there that maybe have 'em yet. So I'd like to know some, so yeah. It's um, I didn't think about it. I didn't know about it, but since we, I moved from the Midwest, which is kind of like Atlanta, where it's affordable housing to new England where affordable, it's like, Oh, this one bedroom, condo will cost you half a million. I'm like I'm spending this much money. I'm want to make sure some of my needs are addressed right away. Speaker 2 28:46 Of course that's an must have Definitely. Well, interesting. This is so nice to hear. Just kind of looking through your lens and what are those accommodations that you ask for and just your own built environment space and thinking about the workplace you do you typically work from home or do you go to an office Speaker 1 29:09 50, 50 non COVID, 50 50. So I think I have one of the greatest jobs in the world. I'm a fundraiser. So I get to talk about amazing activities that a lot of different organizations are taking on and preach the gospel, share the gospel with everyone about what's happening. And I think he kinda feeds off of my Midwest personality. You know, I have two miles, I can do either happy hour or coffee in the morning. There we go. Yeah. It works out very well. You know, we're the home of Miller back home and a big part of the third wave coffee movement as well. So I'm typically out there talking to people I'm sharing what's happening, learning more presenting. So going into the office doesn't make sense most of the time. But again, there are some of the non fun things I have to do where I still have to go into the office and do paperwork and write plants and hear about what's happening in the world. Speaker 1 30:13 Yeah. And speak to the work that you do hair closely with just disabilities in general. So yeah, the, the disability rights fund, it's amazing fun. That was the brainchild of Dionysus and Merrison who is the founding executive director. It is the first global fund that really brought together disability advocates as well as bilateral partners and major funders. So part of our grant making committee, we have representatives from the, from some of the largest foundations and governments, um, from Australia government and the British government, right alongside with the Ford foundation, open society, wellspring, and they're making decisions, um, how and who we're funding right alongside a lot of great advocates with disabilities who are from the global South and South America, Africa, Pacific Island region, and their voices are equal, which I think is huge. I missed the say that, you know, I, I think it's really cool that some of our donors representatives are individuals with disabilities themselves. Speaker 1 31:29 So that is a huge benefit. And I got to keep reminding myself that, but not always separate. It can be two hats on one person. So, you know, we are a participatory grant maker, which speaks to the way I was talking about with our grantmaking committee, where those with disabilities are deciding where the money is going to. I think too often our society, we conflate wealth with wisdom just because someone has made a lot of money from X doesn't mean they're expert in Y. So really letting go of the money and letting those who need the resources to decide what is the best way to send. There's been so many amazing stories about, you know, Melinda Gates who have some of the best intentions, but you didn't know what was actually happening on the ground. Um, I think we all heard the mosquito net story of given this one community mosquito ness to help stop malaria, but they were starving. Speaker 1 32:30 So the mosquito nets became fishing nets. If they would have involved the people there on the ground and actually talk about it, they could have had a sustainable idea, which kind of shifted a lot of their grantmaking now is they involve the community and make sure the community is invested. So it's just part of the idea of when an NGO needs to pull out or their work is done there. The community takes on the work and the work can continue. And where can people learn more about the disability rights question? They can go to disability rights Disability is singular rights is plural and fondest singular, so they can go there. They can learn more about our grantees, what we're doing, what we're all about. Another great resource is going directly to the UN part of our driving document is the convention for the rights of people with disabilities and the CRPD, which was the first international treaty for those with disabilities, you know, a lot of countries ratified it, the U S wasn't one of them, unfortunately, but it's a good standing document to really understand what I mentioned earlier about. Speaker 1 33:43 It's not really a person who is disabled it's society, that disables individuals. Yeah. And my favorite statement, nothing for us without us, which was a driving part of the movement. Because in addition to being one of the first treaties to address disabilities, it was one of the first treaties drafted with civil society. So in addition to all these politicians who are often detach from what's happening, there were a lot of advocates of people with disabilities and people with disabilities drafting this document together. Hmm. So DRF is also helping to push new legislation forward. Okay. No, no. Our agency, the disability rights advocacy fund, which is <inaudible>. Speaker 1 34:31 So I do have another agency, um, cause the legal framework in United States, you know, <inaudible> cannot engage and lobby that, but our disability rights advocacy fund can. So, and we don't really, we don't do it directly. We do it by equipping the, uh, individuals on the ground to fight for their rights and advocate for their rights and challenge their governments to get legislation passed or to actually uphold the laws that are currently on the books. So we see that by taking some of our grantees to Geneva, to present reports about what's actually happening on the ground, which may contradict what the government is saying. We, you know, we see so many great stories of our grantees of really just calling out the politicians because they now have the financial resources to go on the radio, to make ads, to bring people together, to engage in all these activities. Speaker 1 35:33 So it's amazing. It really was a change for me because I used to be part of a lot of the grassroots organizations I worked with. Uh, most recently before I came to discipline the rise fund for broad scope disability services, where we were, um, advocating for workplace training and we were providing respite care and helping with independent living as a district rice fund, we're not really doing any of it, it's our grantees. And we're just ensuring that they are resource and they have the training needed to advocate advocate for their rights. And they're given a platform as well. So, you know, recognizing the power that they, that they do have is a huge, is I want to say huge. It's really important to us as an organization. Speaker 2 36:24 Yeah. And you guys do a ton of amazing work. I've definitely read up on it on your website. So it's exciting to be a partner and just they're with you alongside. And I know an initiative that you guys are also focusing on coming up is June 13, June 14th, that's world albinism awareness day. Speaker 1 36:45 Yes. Um, so pretty soon we're looking at gender June 13th, which is global albinism awareness day, which was a lunch from the convention for the rights of people with disabilities. It's a global celebration. We have worked with some great leaders to bring people together. The UN independent experts, when the enjoyment of people of albinism, I K myself, I'm Antwan from the pilot program for a global albinism Alliance. We're doing a, we're trying to put together a celebration if you will, with, um, looking at a lot of musical talent from all over the world to really share their talents. And after that, to really dive into some conversations, to talk about what's happening on the ground, um, to raise their voices, there's been a lot of changes in last, you know, 15, 20 years. If you go back 20 years in time, there was maybe 10 organizations in the world that really focused on albinism specifically. Speaker 1 37:48 Now we're looking at 200, um, because yeah, in a lot of it is happening in some of these countries in the global South, you know, we're seeing organizations pop up and Tanzania in Haiti, in Indonesia, <inaudible> really addressing the needs of the people there there's different campaigns that happen in different places. So for instance, in Rwanda that I just came back from there trying to ensure that people with albinism can receive sunblock as part of basic medical care. Yeah. One of the funny things that happened there, true. And one of the advocates over there, he looked at me, he's like, how did you guys get that happened to us? Like I wish like that would be a major step in the right direction. So yeah, I say that to say, I think even us here in the U S we have a lot to learn from our brothers and sisters with disabilities all over the world. Speaker 1 38:51 They're doing a lot of things that the U S is just falling behind him. It's really interesting trying to bring together this global perspective because, Oh, it doesn't seem so differently around the world. And there's lot of history behind it. Um, you know, we were talking before about indigenous people in yeah. Organism. I think I have a lot of different stories, not just here in the U S but, um, like in Fiji, um, one of my favorite stories is right around the turn of the 19th century, a tribe. They weren't able to hold their territory unless they actually had a person with albinism and, uh, cool political position. You know, even if you look down and the Panama region, I love, I'm one of the terms that he used down there is children of the moon, because these kids come out here in the day in the sandblast region down there, it's really one of the highest instances of activism throughout the world. It's like one and every 125 or so. Wow. And the rest of the road is usually about one in every 20,000. So it's a really high incidence down there, um, to some of the unfortunate things that we see happening in Tanzania. Speaker 2 40:06 Yeah. And can you speak to more of the indigenous? I think we were talking a little bit earlier about being hunted. That's an issue albinism, have you heard about other awareness aspects of that? Speaker 1 40:21 Yes. And that's the unfortunate part, so I know more about Tanzania, but it definitely happens in other areas in that region, like in the Congo and, um, near some other border countries. But unfortunately there's a lot of misses stereotypes related to Alberta's in that area. There's ideas that is related to witchcraft, or it's a way of punishing a family. There's lots of challenges of paternity where it's like, Oh, that can't be my child, but even goes as far as to some of the witchdoctors, um, make promises to the community and this well recepted and believe that the body parts of a personal with albinism can be used to make posts. So people in that region or literally hunted down and killed and their limbs are topped off, including children. I know of stories of kids as young as four, three, five, who have had their arms or legs amputated and, or living in hiding a lot of times. Now, when you look in our region, a lot of those children are living in boarding for the blind that way they have some level of safety. So, you know, with some of the great stories, like one of my good friends, um, here in the us who is native American, his tribe's, which doctor has autism, because there's a lot of great stories in his tribe related to that. Then you have some of these smaller communities in Tanzania where, you know, the ideology behind albinism can lead to someone's Speaker 2 42:02 Death, Speaker 1 42:03 If you will. Speaker 2 42:04 She is yeah. A whole lot that we are blind to. Uh, I mean that literally just, we're not focusing on that. And we're in our bubble of the United States, thinking that we're protected and nothing else is happening around the world. And it's, uh, there's people being hunted just for the way that they look thinking that it will cure other people. And that's really, really sad to hear that, especially in the disability community, because we already have so much stigma and stereotypes around us and having to continue to overcome those barriers and those challenges just because someone looks different. Speaker 1 42:44 And I think that's one of the hardest things that I can't even get my head around or wrap my ideas, like what could be the best way to handle this? Cause you have people in the hiding because they are being hunted at the same time being excluded from the community. It's just adding to the stigma. So it's truly a lose, lose scenario over there. Speaker 2 43:06 Mm. So on June 13th, what ELLs should we expect to hear? Um, can you give us a little taste of what we're gonna hear from everyone? Is that just more, just a celebration or world of the other discussions, just talking about albinism. Speaker 1 43:23 So the main part will be a celebration and afterwards we'll have discussions that will be in several different languages, Portuguese, French, English. But to me, the part that just really highlights to me is for having some amazing performers like Connie too. Who's from Hong Kong, who's a jazz singer who was a model back in the late eighties and nineties and two thousands. We're having yellow man who is a reggaeton singer from Jamaica. One of my favorite people, Marlena, barber. She was, she's amazing. She's out in California. And she's well known for being a cabaret singer too, even presentations by one of my favorite people, Rick and Dottie who started positive exposure. He is an amazing photographer who has photographed a lot of different people who has, it makes the story of how he was tired of being told of who is beautiful and went off in his own direction to really capture as an artist, the beauty behind different people with rare conditions. I think we all seen those unfortunate textbooks of, Oh, this is what this fill in the blank condition is, which is a lot different than, you know, Speaker 2 44:47 No Speaker 1 44:47 Wayne and seeing people who are diverse and Speaker 1 44:52 Having an amazing life. So his work is absolutely amazing. So that's going to be highlighted as well, even bringing in a few people, um, who are now well known models, um, throughout the world, there's been some really amazing campaigns, even in New York city, one of the billboards, um, dander forest, um, Sean Ross, Oh, for African American models who have done some major campaigns and it's going to be absolutely amazing. Uh, people can find out more information by going to albinism They can directly reach out to me at the disability rights fund. My email is [email protected] Be happy to share more information. We are kind of Mmm. Iterating very quickly. Um, you been, and the computer science for I'm sure you understand the agile. So we're just iterating every day because this was not planned to be this way. Speaker 2 45:54 Yeah. It was supposed to be in person. Right? Speaker 1 45:56 Exactly. We're looking to have celebrations at the conference of state parties at the UN in New York and that was canceled. So this is a way that we feel as if we can be more inclusive because we can have more people involved from all over the world and people who don't have the privilege to access the UN or make it to New York Speaker 2 46:15 Major impact for sure. And the reach. Well, I, I'll be interesting to hear how many people actually register and attend the webinars. I hope you get amazing numbers from it because it will be virtual. So that's so exciting. Speaker 1 46:31 Fully fatigued out from zoo. Speaker 2 46:34 I know, right? Zoom, zoom, zoom, video, chat, chat, all this here and there. It's like, I know zooms. I need to start shaving again. I need to take a shower and put on real clothes. Yeah. That's funny. Speaker 1 46:54 It's my wife. She was a salvia the other day. She was like, I'm so happy. I haven't worn makeup in the last two months. I'm like, Speaker 2 47:02 I bet your skin is just loving it. And you're, I mean, that's the thing. It's like, you look beautiful either way. So, so you still love it. Speaker 1 47:13 The quarantine with better skin and probably extra 15 pounds. Speaker 2 47:17 Yeah. Yeah. Okay. I think we're all looking forward to seeing how everyone changes when they come out. It'll be interesting to go back into the office and see people again. Mmm. One last thing. Are there any misconceptions, stereotypes, slurs, anything of people with albinism that you faced particularly, or just anything in the community? Speaker 1 47:41 I think there's so many, some are bad. Like there is some stereotypes within the blind community here in the U S that a lot of people with albinism are overachievers. I see it in my friend group, you know, I, one of my friends, she works for the number two law firm based off assets and us. Another one has his own law firm. Another is an accounting at John Deere. My wife works for the broad Institute of MIT and Harvard, but on the other end, you know, there are, um, unfortunate conditions that are related to albinism. One is her Mansky Koufax syndrome, which is more or less characterized as a blood platelet disorder, which a lot of times people would assume that a person's optimism may have the sleeting disease associated with it, which is also like as Crohn's and other gastro issues related to it. Speaker 1 48:37 I think my other biggest misconceptions is the idea that everyone with albinism has red eyes. I'm still waiting to meet this rare red eyed albino, maybe one day. Um, but I'll also, some of the misconceptions is, comes from ignorance. I'm sure this one story with you. One of my good friends, um, before he started his own boutique law firm, he was a public defender down in Jefferson city, Missouri. And he went to go visit one of his clients at the jail in the guy says, thank God I got the white guy. I was really worried that I'd get the guy who sniffs paper. Why? Yeah, exactly. And he's saying back to like one of my colleagues stuff's paper, Nobody sits in, he gets his papers out and he brings the papers to his face to read in the back of his head. He's speaking to him. Oh shit. I am the paper stiffer. That happens with a lot of different disabilities as people just don't know. So they make assumptions that just don't add up. It's obviously, there's a lot of curiosity and I know a lot of people is like, just ask, just ask, just ask. And I think that's okay for the most part, but also think about just Google fair. Speaker 2 50:06 Yeah. Google totally. That are present Speaker 1 50:10 Because yeah. I've heard some of that. Speaker 2 50:12 Literally Google, why is this person super white? And you will probably bring up albinism. I mean, you can type in anything in Google and it will populate what you're looking for Speaker 1 50:22 Exactly there and to get a better understanding, you know? So I say that from a position of privilege, I have a lot of friends with different disabilities. I can pretty much ask them anything and everything. And sometimes the conversations go way too far left field. And sometimes it's things I've never thought about. You know, I was talking to one of my friends, she was a valedictorian at Gallaudet university and she was just sharing more to me about the dating culture amongst the death and you know, different things like that. And it's like, this is really interesting. And they were talking about Speaker 2 51:03 Right. That's a whole, another topic of discussion is just dating with a disability is very different. Can be very challenging for some people less for others, just depending on your Speaker 1 51:13 Yes, Speaker 2 51:14 Your disability and how impacted you are. But I think it's also your personality and how you carry yourself. It was also how you put your best foot forward. Speaker 1 51:24 I just think about some of my friends, one of my friends, he's a DC he's blind and has a guide dog. He's like, heck yeah, make sure my guide dogs in every picture. Cause women love dogs. I have another friend here in Boston in, she utilizes a wheelchair. It's like, yeah, I keep it out. And I just show up on the first date and I ever met anyone that have a disability, what their reactions are. Okay. Speaker 2 51:48 Oh, plus I love that. I should try that out. Only posts pictures of my chest up or neck up and then see what happens. Speaker 1 52:02 I think it could be its own blog within itself. Okay. Speaker 2 52:06 I actually watched this video yesterday of this woman who is like six, three, and then she was wearing six inch heels and she was going on a bunch of blind dates. So she's sitting at this cafe and she's six, three, and she's wearing stiletto heels that are an additional four inches. And so Speaker 2 52:28 Well, she's the first person to show up at the cafe. And so she's waiting for the blind date to show up. And so the guy approaches her and is like, Oh, are you Amanda? And she says, yes. And stands up. And she's six, four, six, five towering over every single one of the guys that shows up. And they're just like, wow, you're super tall. I had no idea. And every single date ended up just leaving her, just like, Oh, would you like something to drink? And they would go inside, get a drink and then would just disappear and not come back. And I'm like, that's, I would just be a fascinating story and a blog to write. I think just how people perceive you on social media. Right. Cause you can portray yourself in one way, but then in reality, you can be someone that's totally different. Speaker 1 53:23 Well, I think the other thing that is, I'm not sure if it's interesting, but I think it's the one thing is that a lot of people with different disabilities talk about is there's a lot of fetishism set and going along with disability, especially with albinism where I'm like, I know so many people who have fetishes of women with albinism. So I actually, I started a group on Facebook nearly 10 years ago that has about 6,500 people with albinism on it. And I'm constantly having to block or weed out people who are coming there just to meet women with albinism. Oh yeah. It's a way weird. That's interesting. That's their, what they're attracted to. Interesting. Okay. Speaker 1 54:12 Yeah, but also it's what level of degree of creepiness is it? Right. You know, is it, you're only hunting out people with disabilities in a very particular type. I wonder what else is there? Do you feel that albinism is portrayed in the media and social world and television modeling fashion? All that? Since I was a kid, I think back when I was probably in high school, there's a couple of major film. I'm sure you've seen the DaVinci code and me, myself and Irene. I know assassin. That will be a great job for a person with a visually impaired hunting, somebody killing them. So for a lot of years there was that negative stereotype of the evil vinyl. We seen it and the matrix and have bins in film left and right. And now I just get super stoked where I just see a person's albinism and there's no explanation, no justification, but just there being a normal person. Oh, that's nice. You know, target had some ads recently and I took screenshots. I'm like, Oh my God, there was a person with albinism and you know, again, no justification. And you know, I, I I'm okay with laughing at myself. There was, uh, episode and a family guide. I remember where it was a random blizzard and Peter like, thank God, the weirdo final. Then come out then in the snow, you just see these two red eyes open. I was like, I'm right here. Speaker 1 55:49 Friends being from Milwaukee. And like, yeah, don't go on the snow. Everyone's going to lose me. So I love it. You gotta be able to joke about the things. I'm glad we have some major advocates out there. One of my favorite musicians is brother Ali. Who's amazing rapper who needs more attention and all these different roles in obtuse are people with disabilities. The one thing that I just hope that happens more often than mainstream is that people with disabilities are the Speaker 2 56:24 Ones who are getting the roles for people with disabilities totally. Or casting someone in a wheelchair. How about you actually cast someone in a wheelchair, uses a wheelchair every day. Exactly. So yeah, some directors are in there making a assertive effort of Cassie, more people who are deaf, who are blind, do have mobility impairments. And I just want to see that trend to keep growing so we can have more representation in pop culture. I would say that's totally true. Because even looking at representation of people who use wheelchairs and in mainstream media, it is either portrayed as a tragedy story or, Oh, you're such an instance and a light to assault. And it's what about, sorry? What about just being a normal person who uses a wheelchair and they have their challenges and they're able to overcome them and they're just hanging out just like all the other characters. Speaker 2 57:30 Why can't we just be portrayed as who we are? Well, I think one of the cool things are happening because we are seeing more wheelchairs out there and more assesses assistant technology devices. People are normal hiding, um, their assistant technology devices. Now it can be something that's cool and amazing. I remember seeing some really cool decorated, uh, prosthetic, arms and legs. Yeah. When I first saw the picture of you online, that's like a weird show. I'm like, that's a cool one. Thanks. Yeah. People tell me, I love, I usually get like, Hey ms. X men. And I'm like, well, miss or a man, I don't know what you're going after, but it's funny because I'll actually respond to it because I know they're talking about one of the more unique ones, I guess I'm used to seeing more, I'm watching wheelchair basketball. So it's like when I see her as like that's too expensive, actually it wasn't. Speaker 2 58:28 So my wheelchair in comparison to a lot of other wheelchairs, my wheelchair was $13,000 and I was very fortunate to have my company fundraise for it and pay for it. Um, along with two other wheelchairs that we bought when I first joined the company. So it was really awesome. But if we think about other wheelchairs, some of them are $70,000. So 13 is on the way, low side damn near bargain. Yeah, for sure. Yeah. And it looks cool. No, that's cool. And I think that's the other thing that needs to be discussed is the cost of some of the see devices that, Hey, I don't need to be as expensive as they are. Insurance companies need to cover more of these devices. You know, it's unfortunate. I even think about, because my sunglasses needing to wrap around the cheapest pair of sunglasses, I've been able to find with my prescription in, it has been $700. Speaker 2 59:30 Yeah. Yeah. You know, it's still cheap compared to a $15,000 chair, but at the same rate, as I mentioned earlier, I'm still trying to find all these rich people with disability so they can, you know, help me out. Yeah. I feel like, yeah. I would say that it was interesting that you say about the wheelchairs being expensive and just other medical, durable medical equipment. So the type of wheelchair that I had, actually, they got denied or through insurance because it was considered an all terrain vehicle and FDA regulation States that, you know, wheelchairs are only meant to be used inside your house. And so they considered a wheelchair with four wheel drive that that's, you know, that's to, to advance or someone with a disability to be able to go outside. And God forbid, they want to go on grass and dirt and rocks in the park at the same rate. Speaker 2 00:28 It's like, I just pay the difference. You telling me what's approved. If I want the catalog, it's out of the Camry. Difference in price. Okay. Yeah. I'd be down for that too. And that's why I think we need to get to and society is like a lot of us are working. We have disposable income. We are able to contribute towards our own assistive technology. Let us just pay the gap in difference of costs, where I'm not having something that's going to break and year or two years, or really, you know, make my life more difficult, but I'm willing to put money towards this. But the same rate, you know, I think about, you can easily get a car loan to buy a car for $15,000. How many banks are making products and loans, you know, geared towards people with disabilities. Why can't I just go to chase and like, Hey, I need this wheelchair for 25 grand. Speaker 2 01:20 I want years 0.1% interest rate. Awesome. A loan on your wheelchair. Yeah, I know. So the second wheelchair that I bought to have like as a backup, because obviously babies are electric and the battery only lasts so many hours. I'm super active. So I needed to have two wheelchairs so that when one dies, I can still go out and be mobile through the night. And that one actually I could do payment plans, which was really nice. So I did it through scoot around. So I, that was the first time I've ever seen a payment plan for durable medical equipment. So it's really nice to have, well, I haven't seen that off for two years. Yeah. Trading opportunities like that. I think it's rare. It's rare. Major banks should get behind. They are making sure you know, that their apps are assessable so people can still bank with them. Now how about we make sure there's some products out Speaker 1 02:20 There, for instance, you know, with my mortgage that I'm getting through chase, I asked my bankers like, Hey, do you put like a 20, 30 grand cushion in there so I can get some devices in my house. You can pay for that out of pocket. Sorry, we can't do that. Wow. So it's unfortunately, unfortunately, but you know, unfortunately our, in our society, in the us, we are so reactive. So until there's legislation or someone sues, why can't companies be proactive and these opportunities, and actually listen to the people that they're trying to have as loyal customers. Speaker 2 03:03 That's the thing with being someone, having a disability and living in the United States is it is so reactive is there's no real enforcement other than the people on the ground asking for change. And usually an injury happens or some discrimination and they Sue and that's, that's the only way things actually get changed. Speaker 1 03:22 And people are tired of suing. Speaker 2 03:24 I'm so tired of sewing. I ended up just so doing mediation for everything. Cause it's, it's a lot less expensive and it's much quicker, but I mean, I don't make any money off of it. Speaker 1 03:35 And I think that's what people think is like, Oh, you'll be taken care of. You can Sue. It's like, well, first off you have to go through all the legal loop holes. Then you'd have to Speaker 2 03:43 Years minimum. It's so long. Speaker 1 03:47 And you're talking about Atlanta and Atlanta is a lot more friendly than, you know, other places in the South. Speaker 2 03:52 Yeah, I, yeah, it's getting there. I'm helping a lot pushing the city and uh, positive direction for accessibility. The local government knows me very well. Speaker 1 04:04 That's important. Speaker 2 04:05 Yes. Speaker 1 04:08 No, like I said, I've seen so much of what you've done and I appreciate, you know, the forest that you are in that true speaking out and all that fun thing. If I'm when I make it down to Atlanta. Speaker 2 04:20 Yeah. Let's come, come on out. We'll have a good time. Yeah. Yeah, let's do it. I'm totally down for it. It was the local bar that I go to all the time. Uh they're really cool. So just down the block. Yeah. Thank you so much, Philip. I really appreciate your time and just sharing and chatting about disability and equities and discriminatory slurs and all kinds of things regarding albinism and just disabilities in general. So it's such a pleasure. Speaker 1 04:48 No, this was a great conversation. Thanks. Uh, if you ever need anything, do you know how to get hold of me? Speaker 2 04:52 Sounds great. All right. Take care. Bye bye. Speaker 0 04:58 Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic. <inaudible>.

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