Deafblind Entrepreneurs Talks Disability Pride and Accessibility with Erin Perkins of Mabely Q

Hello, and welcome to Disability Pride Month. This is the month of July, and there are thousands, if not millions, of people who are disabled in the world. And today we're having conversations with 2 of them on what it's like to be disabled. I am Zaakirah Muhammad. I am a retinoblastoma eye cancer survivor. That means I can only see you in one eye right now. I have a prosthetic eye. Hi, I'm which was surgically removed when I was 6 months old. So since then, I've only known life with one eye. As a result of the surgery, I also had radiation treatment, which affected my hearing. So I heavily depend on captions online. I'm also a brand strategist, the author of the book Seeing Life Through a Different Lens, and I recently became a TEDx speaker talking about the same thing that we're going to talk about today. And if you're interested in looking that up on YouTube, you can look for the title Seeing Life from a different lens. And as a result of the success of the TEDx talk, I'm working on building a documentary series where we can continue this conversation and talk to other women of color who are going through the same thing, either have the same type of eye cancer that I have, or they also have other eye cancers. So now I'm going to turn the microphone over to Erin, and we'll let Erin introduce her disability, her creativity, and really let you know who she is.

Yeah. Hi, I'm Erin Perkins, and I have— My disability is called Usher syndrome, but most people don't necessarily know what that is because my disability is, it affects my hearing, so I was born deaf. I had, I grew up with a hearing aid in both ears my whole life. At the age of 29, I got a cochlear implant on my left side. I will say I'm not a fan. I definitely rely on captions and just trying to communicate. My parents put me and my older sister through speech therapy, so I had speech therapy all the way until 7th grade. And then we also know American Sign Language as well, so like I have different ways of communicating with people. It wasn't until I was 21 when I found out that I was also losing my vision, which brings me to Usher syndrome. If it's just the vision loss, it's called retinopatia pigmentosa. So when I go to the doctor, I have to say, I'm deaf and I have retinopatia pigmentosa, because they don't necessarily understand what it means. What retinopatia pigmentosa means is— I hope I say it right. I don't know if I say it right. No one's ever corrected me on it. I can only— I have lost peripheral vision. So right now I'm between 40 to 50 degrees of peripheral vision. Most people see about 180 degrees. So if you're standing next to me, chances are I don't see you and I probably won't hear you. So there's that. So I'm not being rude, I just literally can't see or hear you. And yeah, and about my business is Mable EQ. I teach businesses how to be accessible beyond just the physical aspect and your website. A lot of people, when they think about accessibility, it's all about, oh, I need to make sure my website's set, but we're forgetting about the social media, the email, the podcast, the events like this. that we want to make sure are accessible.

Absolutely. Yeah, and I'm glad that you mentioned that, um, both the in-person and online side. I think for background context of how we met, we're both a part of an online community— well, we used to be in person and now it's hybrid— a community called Rising Tide Society, which is a community for creative entrepreneurs, um, and July is still their birth month, it's their birth month, and so there's the community of creatives, and so I kind of want to go backwards as to your why. Why did you end up choosing to be creative and choosing to start Maybelline CURE?

So I worked for corporate for most of my life. Right out of college, I went into a nonprofit, ended up in the corporate industry, And always, and my, my boss always joked, but like, I kind of took it personal that like, if it wasn't for me joking about my deafness, that they, she probably would have never hired me. And that always like pains me in a sense, because for me, I feel like, you know what, that is a crutch. Like, I'll joke about my disability because I can. I don't take it personal, but when somebody tells me that it is something that you kind of used against me, it feels mean. It feels cruel. So I worked for the corporate for 12 years and then they laid me off. And I realized at that point, if I continue with going with another corporation, I would end up in the same cycle over and over again. So I decided to give a shot at doing my own business, but I realized if I wanted to learn from other small business owners and creatives, I— there was this barrier of online where a lot of people did not closed caption stuff, and I was like, I can't learn from you if I can't And they were like, oh, I don't— I didn't know any better. And that's not their fault. Like, society is not designed for disabled people. It is designed for able-bodied people. And so I started having to figure out how to educate them myself because I always had stuff handed to me because—

Mm-hmm.

To support disability— people with disabilities. It is easier when it's a big entity, but if it's just you as a small business owner, it is so much harder. And usually the small business owners, I feel like, are a lot more passionate about wanting to support other people.

Absolutely. And I'm glad that you mentioned your story. I feel like I have a similar story. One is I'm a creative at heart, and I will do Follow my gut anyways. So, you know, despite having my fair share of jobs, I've always gone right back to entrepreneurship. I've always had a side hustle while I was working part-time. I don't think I've ever had a full-time job. The only full-time job was if it was supposed to be part-time, but I was the one who was voluntarily filling in the full-time hours for that week or that quarter or whatever. But similarly, One, I was one of those who hid my disability until I got the job. Yes, they slowly but surely started to ask on the form that you fill out for your application, but until I'm sitting there looking at the HR person and they say, okay, you're in, I'm like, okay, great. Just so you know, I can't hear you as well. I can't see on my right side. I have serious case of fatigue. And they're like, okay, great. But they never like, or like, oh, they never retract the application. At that point, because they know at least that's a part of the disability.

But like, that brings me to that question. This is why I decided to stop applying for jobs, because a lot of the forms will ask you if you have a disability or not. How did you deal with that? You just said no?

I said no. I lied. That's the only time that I lied. They know that I'm 42 seconds late.

That was my challenge, is like, I would basically just not answer that question because I was like, If I said no, I'm lying on my resume. If I said yes, I feel like that immediately, like, pushed me in the no pile. If I just left it blank, it kind of left things open. But I feel like a lot of people with disabilities do fear that question because, like, the bias immediately right there, correct? Mm-hmm.

Yeah, absolutely. And I think at this point, especially as where we are in 2024, July 2024, it's— it's— I think there's going to be a lot more people wanting to fulfill their own pathways, but they still are depending on the cushion of a corporate job because of health insurance. Health insurance is another place, at least I can say, that I've easily been discriminated on because most people, if they're not looking at me, if I didn't say any of the things that I said, they're like, wait, you're disabled? So, you know, that invisible disability plays a huge role, especially when it comes to the health experiences.

Yeah, we're very— like, I admit I'm very privileged in the fact that I can be fat, I can still, like, communicate with people. But, like, I will say, if I met you in person, I would probably have a lot more challenging time understanding you. Because I don't have the caption in front of me. So it's an interesting aspect, is like, I recognize I have that privilege, but at the same time, like, come on, like, I need that support. And have you ever been accused of faking it?

I have not, thankfully. Um, I think most people, it becomes a, um, Aha moment, or they never say it out loud. I know I can, I can read body language, right? When I lose my hearing, that's the only other sense that I gain, and so I can read body language. So when I do tell them like, oh, I'm hard of hearing, or oh, I can't see my right eye, then they start just kind of looking around. So maybe in their mind they're like, is she for real? Is she real? Um, but they've never said it out loud to me. What about you?

Yeah, same. I feel like people will not say it, but they However, they will question you online as long as they can do it anonymously.

Mm-hmm. Yep.

It's just like so messed up.

Now, what can we do? Because both of us are in this season where we are, we are doing in-person speaking engagements. I have a few more to go and I've had a few where it's some, some are adapting and some are not. But what are some tips that you have for those who are running these conferences? and events in person?

I would say number one, automatically ask the person what they need in terms of support because like you take the burden away from us from always having to be like, oh, I am so scared, I am very nervous about asking for support because I'll be like, you know what, it's okay, I don't really need an interpreter. But no, the reality is I do need an interpreter. And like, for you, like, I don't think you know sign language.

So for me, I studied sign language in high school, but again, culture and community. If I didn't stay around other, uh, deaf or hard of hearing people, it's a language that will go down the drain. So for me, um, I know that right now that's probably about the only option, but I'm a lip reader, so even if I have an interpreter They mouth what they're saying anyways, so I make sure that I do request an interpreter because I let them know that I'm hard of hearing so that, um, I can at least lip read or be placed up front, which is where they're going to be anyways.

Yeah, so like the other thing is other people will like ask because like not every person, like deaf person, had the same need. Like for me, I definitely need an interpreter. You said you would want someone that can basically help you lip read so like you can be face to face because it's not like you're going to be able to sit in the— stand on stage and be able to lip read someone like 20 feet away. Like, I mean, that would be an amazing superpower though, like that kind of thing. So it's like acknowledging that every speaker is going to have different requests. It does not mean we are high maintenance. It means that we have specific needs. That need to be accommodated. The other thing is like making sure that the speakers have the opportunity to really do a walkthrough and understand what the setting is like so that they can feel comfortable with the environment. Like especially if you know that it's gonna be dark, that might actually pose a challenge for you and me both.

Yeah.

Be able to like, all right, if there's some stairs going up that day, I have a fear of tripping up those stairs. So I'm like, I want to make sure I know where I'm going. So it's like, are the stairs lighted so that we can walk out without any issue? So it's little things that are just like thoughtful adjustments that I think will make a world of difference as, as we come in and speak in, in person.

Absolutely. And I think I want to kind of flip All of the advice that you said, I second all of the advice that you said, but I kind of want to flip it from the advocacy side. These are the things you should ask for. These are things that I'm asking for because most of the time they won't ask. You have to say it. You have to say, I need XYZ. So being able to say that you need these things will allow them to kind of think a little bit differently, see life differently.

For sure. For sure.

Okay, now I kind of want to educate people more on both of our disabilities because most people may not even understand just what Usher syndrome is. And I think I'll give some context when I educate people on Usher syndrome. I let them know, no, not the music artist that performed at the Super Bowl. The actual name of a syndrome. So tell us more about what you have learned, at least scientifically and statistically, about Usher syndrome. syndrome?

So, Usher syndrome, it— that right now I know there are 3 different types of Usher syndrome. So each one affects people differently. I don't personally feel like I fall into any of them, which is interesting because even the doctor is like, uh, I don't know what type to give you. But for some people, like For each type, like, it will usually affect a hearing or vision more than the other. And then the other thing is it also affects other parts like your balance or night vision. Like, I feel like I have pretty good night vision, but my older sister, her night vision is terrible. She cannot see anything. So it's really interesting how— And it is something that is passed on through your genes. So my parents both happen to have recessive genes with ending up— so that meant they had a 1 in 4 chance of their kids getting it, and 2 of their 3 kids got it. So, but my sister who had kids of her own, they do not carry the gene, so it's It's just something that it's a gamble, really. So there was no way for my parents to know unless they did genetic testing over 40 years ago, and they wouldn't have done that. Nowadays, like when my both my sisters wanted kids, they did do some genetic testing to see what would happen, and they were both clear of it.

And so I have a personal question for you. Have you— and I know you're married, but social media may or may not know you're married— so have you and your husband had that conversation?

We, uh, have never— both of us have never ever wanted kids. Well, he wanted kids when he was much younger, but like, I've just never wanted kids myself. So we were lucky that we were both on the same page in terms of no kids. My dog is my kid, basically, which is even better, I think.

Got it, yeah. And so retinoblastoma is similar as well. There is a certain gene that will get passed down from me. It's a 50/50 gamble as well that the kid may or may not get it.

Right.

And so retinoblastoma shows up in children and newborns, and if it's not detected or surgically removed, Or not even surgically removed, there's, you know, you can freeze it away now or laser it away now because technology has improved. If it's not caught by any time between the ages of 5 and some— lately I met someone who just got diagnosed at 13. So, you know, if it's not caught at a certain young age, it could spread to the brain, which the brain is our operating power.

Wow.

statistically, it could cause death. But the good thing is what they say is, okay, we saved your eye, or at least, you know, even if you're completely blind, we saved your hearing. And so as long as they say something is saved, then, um, they— it's a success to them. But I know what they're working on is to have more people do genetic testing so people know where, where that gene comes from. Um, and there's some more statistics that, you know, research has to be done where what, what, what war chemical did it actually come from, you know?

Yes.

Because I am a child of a veteran and there, there's some statistics out there, but it got hidden. I found it, but it got hidden. But some of it actually can come from war chemicals. So, um, it affects children. It can be detected and should be detected, uh, with children. And, uh, depending on the environment, like third world country probably struggle a bit more with with making sure that it gets removed a lot harder than it would for the US or Canada or the UK because the technology, there's tools, there's certain equipment that should be used to show the light. There's a certain light. I think my middle name is Nayar, just the irony now that I'm realizing that I was saved by the light because back then we had the photographs that you took on the film cameras.

Yes.

And instead of the red glow, you saw a white glow. And so being able to My parents being able to detect that white glow, that was the first surefire sign that lets you know, okay, something's got to get checked out because there's something going on back there. But nowadays people will see it and think it's a bad angle and just Photoshop it out, or, you know, there's a new Google phone that would just automatically remove things. So those are the sure signs to look out for.

Exactly. So like with the doctors, when they first found out about your eyes, did they like Automatically know, or did it take a little time to get diagnosed?

It took time to get officially diagnosed. My mom had to get a second opinion because I had a physician, you know, 6-month-old checkup, and I had a physician that brushed it off and said it was nothing. But my mom had to follow her intuition too. That's the other thing. You got to trust your gut that you know that something is up. So Then when my mom got the second opinion, that's when it was referred to the ophthalmologist to say, okay, this is what this is and this is why you need to have surgery now, or your daughter needs to have surgery now. So that happened a lot too. I remember I have a podcast as well, so occasionally I will try to interview others with vision impairments.

Yes.

And I even ended up interviewing a— she used to be an eye doctor, well, a doctor. And she said she too just kind of missed it and she always has that regret. She was like, there was somebody that, you know, she missed it. I mean, somebody else had to get a second opinion from it, but she would have felt better if she was the one who detected it. So it's easy to miss, yes, because if you're not paying close attention to your child, especially if, you know, you see quote-unquote lazy eye, it can be easy to miss.

Interesting, because like I feel like it took a while for the doctor to figure out that me and my sister were deaf because I was like considered hard of hearing. Well, firstborn, because I would react to some things but not all things. So that— but no one ever caught my vision. But there were so many clues as a kid. Like, I would literally trip over stuff. Like, I would just like make Really stupid fall. I played volleyball in high school. I did setter, which is like the worst position someone with no peripheral vision can play. I was really bad at it, but they kept me in that position. And then like, you know, before I— like, I would literally have to sit like this close to the TV to be able to see it. Like, I was like legally blind. In that aspect, um, not being able to see anything. Like, I had one of those big, like, clocks with the numbers, and I couldn't even see that just, like, from inches away. So there were so many clues, but it wasn't until I got laser— I wanted laser surgery— is when they were like, something is up with your eye. We need you to go see somebody else.

Yeah.

So I did that, and that doctor, who is like the biggest asshole in the world, was like, oh, you will be blind in 10 years. It's been 23 years, so I, I still have my vision, but like he literally told me that I would lose all my vision in 10 years, but that's not correctly— he was misinformed severely. So yeah.

Yeah, and I'm glad you mentioned the deafness or the hard of hearing. So that does seem a bit easier for people to detect because—

Well, they have to do a hearing test when people are born.

Now, now, but it wasn't always that way, right? Like when we were born, it wasn't always that way. But it's easier for people to detect deafness or hard of hearing because most people take it personally, like, are you ignoring me? I'm talking to you. So when people, you know, pay attention to that, like instead of taking it personal, they can realize, okay, let's take this to the doctor. So it's a lot easier for people to pick up deafness or hard of hearing than it is vision loss. But yeah, I had the same thing growing up. I mean, I think this popped again. I was diagnosed at 6 months old, so I had the opposite of adjusting to vision with one eye, bumping into walls.

Mm-hmm.

Definitely had to be careful with the sports that had hand-eye coordination. And all of those things.

I know there are certain things I'm like, oh my gosh, like softball. I'm not good at that either.

Baseball.

Like, no, like, like, I do not see the ball go by. Like, what do you mean? Like, no, terrible, terrible.

That's kind of why we chose to be creatives. Uh, we can play it, we can choose our environment. And that's true.

I have a question for you.

Yes.

Do at any point do you feel like you identify as deafblind? Or do you feel like it's a separate thing for you? I'm very curious.

Yeah, you know, I think I'm going to bring it back to the government side of things. I think I identify as it because that's what the government needs. That's what you need to say for Social Security, for health insurance, for your jobs, um, for, you know, getting any kind of benefit. But I struggled with Again, the invisible disability. I struggled with being told you're not disabled enough. So I, yeah, yeah, so I would do so in terms of, okay, I'm gonna talk to, you know, the government for resources and assistance, but otherwise, no.

Interesting, interesting. I feel like I only started identifying as deafblind, like, 3 years ago because I started realizing that every disability is on a spectrum. It kind of like, when I thought about the autism spectrum, that is like when it became really clear to me that every disability is on a spectrum. It's just not really ever talked about. Like, there is no one way of being deaf. There is no one way of being blind. But Like, it does sometimes feel weird to say I'm deafblind, but I can still see. But I also like to confuse people too, because I do wear a deafblind, um, um, jersey when I go snowboarding. I can do that sport because it's me, but when I wear that jersey, I do it to basically ward people off from like coming close to me.

Oh, okay.

And they get very confused because they're like, How can you snowboard if you're deaf and blind? Like, this doesn't make sense. But I don't want to— why should I have to contend with the fact that being blind does not mean you have zero vision? Being blind means like you have some sort of vision loss.

Absolutely. That's really what it is. I think— I feel like this conversation can go on and on and on because we got answers to all of y'all's questions, but I want to— I kind of want to end with maybe one thing that people would, you know, for advocacy and allyship going forward, what is one thing you want people who are able to do differently going forward?

When somebody with a disability asks Or support or they share their story, don't minimize it, but also don't apologize for it either. Like, I hate that. I don't like the sympathy in a sense because like, this is all I've ever known. I don't have any woe is me. Kind of mindset. Like, I'm like, yeah, sure, I'm deafblind. I, I do have moments of life where I am so pissed that I'm like, I just want things to be so much easier for me. But at the same time, I don't feel like the higher powers that be would have made me this way if they didn't think I could handle it. Like, like, I'm agnostic, so I don't believe in God, but there's some kind of higher power. So like for me, like I feel like we were made this way because we can be the people that speak up for other people who can't speak up. So when I say I have this and I need support, take it to heart, but don't ever feel sorry for me.

I love that. That's definitely a mic drop moment. That's, that's the clip right there. And so how can people find you? you online, continue to ask you questions or work with you?

Um, they can find me at mabelyq.com. That's my website. And then Instagram, mabely_q there. And I know you'll share that in the comments as well. And those are 2 different really good ways to get ahold of me. And basically, we can work together in the sense of looking at your entire business as a whole and finding out where the gaps that you're missing in order to ensure that your business is designed to be accessible for every person possible. Because majority of the people who have disability will not tell you they have a disability unless they feel like it's a safe Absolutely.

And if you want to learn more about me, I am everywhere on social media at the meaning of my middle name, which is Bright Light, I-L-L-U-M-I-N-O-U-S-O-N-E. I am social. I am a— I've had a decade-plus experience as a social media strategist before I ever became a brand strategist, empowering women to confidently tell their stories online and offline. So You can also learn more about me by searching my first name and my last name on YouTube. I'll have you start there because I've had a few conversations. And as a reminder, I talked about some of these things in my own story in my TEDx talk. So you can look up Zakirah, Z-A-A-K-I-R-A-H. You can add my middle name because there are a couple of other me's out there I saw. So my middle name is Naya.

You're not original?

I'm not. I'm probably— well, I don't know the age difference. I think I saw someone maybe 2 years older than me, but I, I thought I was the original. I really thought I was.

I, I was original with my maiden name.

Okay.

And then I went and got married. Not OG. My maiden name is Himmelman, H-I-M-M-E-L-M-A-N-N. And I was literally the only person, and then I went and got married. Dang it. But I changed my last name because I needed something easier to say. There were way too many M's in the maiden name.

Yeah, trust me. Yeah, you see how many M's I got in my name?

Yeah, but yeah.

Yeah. Okay, well, this has been an amazing conversation, and of course we probably should be keeping it going. I'm sure that's what the comments will say— I want more, I want more. So we'll probably find a way to bring this back.

So thank you.