Episode 15: The Intersectionality of Being Black and Dyslexic

On this episode of the Inclusion Think Tank Podcast, I welcome my guest Winifred Winston. We discuss the intersectionality of being black and dyslexic.

Episode Transcript

Arthur: This is The Inclusion Think Tank Podcast brought to you by the New Jersey Coalition for Inclusive Education—NJCIE, where we talk about inclusive education, why it works, and how to make it happen.

On today’s episode we welcome our guest Winifred Winston. Winifred is a parent, founder of Dyslexia Advocation, and the co-host of the Black and Dyslexic Podcast. During our conversation today, we will discuss her story of how she became an advocate for her daughter who is diagnosed with Dyslexia and ADHD, as it relates to inclusive education, and how it led her to create Dyslexia Advocation a non-profit whose mission is to “equip parents of children with dyslexia and other language-based learning disabilities with the necessary tools to help their child(ren) become successful readers.”

Arthur: I would like to welcome everyone back to another episode of the Inclusion Think Tank Podcast. I'm your host, Arthur Aston, and I am joined today by my guest Winifred Winston. And I am happy and grateful to have you on the podcast today, so thank you for joining me.

Winifred: Oh, thank you so much for having me Arthur, this is great, I’m excited.

Arthur: Yeah, I'm really excited, too. So of course, I read up about you and preparing for this, and I saw on one of your social media sites you gave a description of yourself that says you educate, empower and equip parents of children with learning differences like dyslexia, and you are also the host of the Black and Dyslexic podcast.

Winifred: Yes.

Arthur: Yes. So I would love for you to share anything else about yourself that you would like for us to know.

Winifred: Well, you know, the first thing is, yes, I'm a mom and I'm a mom of a child who struggled to learn how to read. Having also worked in education, I thought I would know how to help her. I have friends that were educators. I was able to call folks to say, hey, can you look over this IEP for me? I thought like, okay, we'll be fine. I’ll figure this out, but that wasn't the case, and so I found myself feeling helpless, feeling like oh, my gosh, I can't help my daughter.

Like, I'm not doing something right. So first, being a parent advocate and really immersing myself in this space, because what I learned is that, we were so far from getting her the right help and being in the space of special education and literacy and dyslexia, it was a very white space. I found myself helping other parents and also navigating and getting help for my daughter.

But, there wasn't a space for black and brown people to feel comfortable, and folks would hit me up. I call it on the back end, right? They would come to meetings, but then they would reach out to me separately.

And so I kept feeling like I need to do more because now I'm in this space, I'm immersed in this space, and then that just led to me, starting the nonprofit Dyslexia Advocation, where we do want to educate, empower and equip parents, and we focus on trying to reach more Black and Brown parents because of the education.

You've got to educate yourself on the special education system, your child, and then dyslexia and what that means. And also reading and literacy. There's a lot of education that's involved. And once we're educated, we can feel empowered, empowered to advocate for our child, empowered to ask for what we need, and feel okay in doing that. A lot of times black parents get pegged as the angry black parent and then equipping them with the tools.

Winifred: Because there's so much out there and there are so many people who will try and take advantage of you because you don't know what you don't know. So now you're equipped with all of this information and you can successfully advocate for your child who is struggling to read.

So I was just so passionate and trying to find my lane, and trying to find and really, after the George Floyd incident, trying to really carve out a lane that I knew I needed to be in, but being okay, being in that lane, and not feeling like I'm doing too much and being too extra when I tell you I want to reach more black and brown families because we know that black and brown children are under-diagnosed, correctly, and over-diagnosed incorrectly. So I really wanted to tackle that and just be courageous in my efforts and not be apologetic about it.

So I also, like you said me and LeDerick, we host the Black and Dyslexic podcast and that was an effort to our dyslexia awareness campaign. That was an effort to remove the stigma about learning disabilities in the black and brown community. Have guests on who can share their lived experiences. I'm so proud of our Bad-Ass Parent segment. I had to sell a lot of people on that.

I'm like, No, it's the Bad-Ass Parent segment. I feel it in my spirit. Parents want to share their stories and so much so that a lot of folks reach out and tell me, I just listen to the Bad-Ass Parent segment because it's the parent's journey that resonates with me that made me feel okay, to make me feel like I'm not alone in this. You know what I mean? And then to have professionals in this space, a lot of folks, a lot of black folks didn't know, speech-language pathologists, what they actually do.

Winifred: Dyslexia is a language-based learning disability. A lot of parents didn't know the difference between what I call a home tutor and then a specialized tutor, right, and not even understanding that, yes, you can get an advocate to help you through the process of the IEP.

Right, and you can have someone at the IEP meeting with you. And so there were all these different things that I didn't know myself. Having been an educator, having had friends in education, I didn't know. So I wanted to bring that to the masses, and so that was our passion project, the Black and Dyslexic podcast.

Arthur: Yeah. That is like I said, I've listened to a bunch of episodes of it and it's great. I love the conversation of it all. It's just a laid-back conversation, and just the two of you and your guests are just really being real and reaching some serious topics and important topics and getting to help people find the right avenues and the right way to, better help themselves and their and their children.

One thing that you just said that I would like to talk a little bit more about is being under an over-diagnosed part in Black and Brown communities. Can you just share a little bit more about that?

Winifred: Sure. So in doing this work. We see that more dyslexia is thought of as a white wealthy learning disability, right. A lot of when we look at the data, this is data that shows that one in five folks have dyslexia.

And about 34, I think it's only 34-35% of children are actually proficient in reading on their grade level in the whole country, and when we look at special education and we delve into learning disabilities, we find that a lot of black and brown children, the system focuses on behavior and not academics.

So a kid who might be diagnosed with ADHD or emotionally disturbed, but there's a learning disability. There's an underlying learning disability there, and so much so that in order to navigate this space, I became the director of admissions of a special education school,

and so in that role, I'm reviewing reports from parents all across the state of Maryland who want to get into our school. And I'm able to see in these reports how a little black boy's behavior is described.

Certain words are used: aggressive, we had to redirect, and then I look at a report from a white student saying behavior but different words to describe that behavior and that really was like, am I reading this right?

Winifred: Like, wait a minute. I'm seeing it from every angle. You know, and so a lot of parents in the black and brown community don't want another label on their child. They don't want another label because there are all these labels, but not really understanding that, hey, we've got to get the right label because, they’re going to label your child regardless. They're going to label them defiant. They're going to have them labeled uncooperative. They're going to place some label, but it won't be the correct label.

To a parent who doesn't know anything about this, like, oh, my child is struggling, and then the school will say, oh, okay, well, they're not paying attention.

They're not focused, and it’s ADHD. Even for my daughter, she's dyslexic and ADHD in my ignorance, when they said ADHD, I thought, Oh, no, she's black, and that's a medical code and they just want insurance to pay.

Because, in my ignorance, I didn't know what ADHD looked like. I didn't know how it showed up. Now, here's the kicker. I had someone that I trusted read over my daughter's report and I said, look at the disparity in my answers and how the teacher answers some of these questions.

And she said to me, she said, well, you know, sometimes when the parent exhibits the same behavior, they don't recognize it as an issue. Basically, that's what she was saying. Right. And I thought to myself, when the parent, afterward and I said and when the parent has the same…

Oh. She is trying to say I'm ADHD. Sure enough, classic ADHD. Never knew it. Never identified. So you think about parents who may exhibit the same behaviors but have never been identified, never diagnosed and say, oh, well, that's just my child.

Because I would tell you, oh, that's just my daughter. Her birthday’s five days after mine. She has the same energy as me now. You know, I'm ADHD, but did not know. Right. So you have so many black and brown families who just are not aware, then we don't want another label.

And then they're incorrectly labeling our children because so many, like if my daughter, I'm afraid that if she was identified with the ADHD first, we probably would have never gotten a diagnosis of dyslexia or the interventions is because they focused on, oh, she's not paying attention, oh give her medicine so she'll pay attention.

And it wouldn't have mattered if she's dyslexic and not getting the type of interventions that she needed. So we see that there's a huge disparity in the correct identification and then there's the over-identification of the wrong things. So we see that a lot.

Arthur: I definitely identify with when you say like, Oh, that's just my child, that's just how they are, and, they're fine. And so, it is important to get the proper diagnosis.

Winifred: Because a lot of them are hereditary. We also found out that my daughter’s father is dyslexic, and I knew as soon as she was identified that, I was like, he's definitely dyslexic and never identified, never got any help. And so, he just thought he wasn't that smart and struggled in college.

And a lot of parents that I speak to that come back to me later, you know, it may be one parent who's on board with, okay, my child has this identification, this learning disability and this is how we’re going to get through it.

And then another parent would be like, well, no, don't label my child. And that parent, you know, will confide in me like he's just like him, like he's just like her. And I'm like, yes, it's hereditary.

And it does run in families. And so, it's hard for some adults to look back and say, wait a minute, that's me. Here I am, 40 plus, 35 plus. And that explains why X, Y and Z?

And I've developed all these coping strategies. Some of them I thought were positive, but really they're not, and so sometimes it's a lot for a parent to take in all while they're still trying to advocate for their child.

Because now the onus is like with that and what do I need to do? What can I do differently? so it's a lot to take on. But as parents, we're going to do whatever is necessary to help our children.

Arthur: That is absolutely right. Yes, as parents, they definitely do whatever is necessary to make sure that their child gets, you know, what's needed and what is going to be most beneficial and helpful to them for sure.

Arthur: So that's actually a perfect segue into what I wanted to ask. Can you share your story about how you started to become an advocate for your daughter and what that process was like, and all the steps that it took?

Winifred: Oh, gosh, absolutely. So my daughter, because I worked in the public school system here in Baltimore City, I'm like, okay, I'm keeping an eye on our neighborhood school, and I'm like, I don't know if public school is going to be the route for us.

So she was at a small private Christian school. I just noticed she wasn't reading. She had no interest in it. But at three, her vocabulary was vast, using words like, Oh, I have to defecate. And she's very inquisitive, asking all these questions.

So in Pre-K, we had to pull her from the reading group. You know, she's catching on. She's remembering all these things. But she wasn't retaining. We were going over sight words, but she wasn't retaining sight words and we were going over scripture, bible, scripture and she would remember it. She would take the quiz and she would sit in the next week. It was like we never went over it.

And I just noticed she wasn't retaining and she didn't have any. The huge thing is she didn't have any interest. I have a nephew who's the same age as her, and he wrote her a letter. I’ll never forget it. He had wrote her a letter and mailed it and I'm now like, how cool is that? Not email, but you're getting mail.

And she just looked at it and was like, Oh, mommy, you read it. Like she had no interest. And that just really struck me as odd. And everyone is telling me, Oh, she'll catch on. You know, she's my only child.

First-time mom. “Oh, you're being over the top. What are you worried about? She's so smart. Oh, I talk to her all the time.” That's what everyone kept telling me. She's so smart. I talk to all the time, and I kept thinking, well, yeah, she's so smart. That's why I'm concerned. She's so smart, but she's not reading.

Winifred: And so, we ended up leaving the private school and we went to a public charter school and it was arts integration and project-based learning. So the kiddos learned by doing hands-on projects.

And I knew my daughter. That rigid environment that she was in, in private school really wasn't for her. And when I went to visit the school, the kids were on beanbags. They were just free to roam about and move.

Winifred: And it was very engaging, not knowing she's dyslexic. And so I kept telling them I'm really concerned about her, her reading. And we were in a very small class. And these public schools are like, you know, large class size is larger. Just concerned. I'm concerned.

So to end of first grade. In the first grade, they said, “Okay, well, we what do you how do you think her progress? What do you think about the progress she's made?” And I said, okay, you know, she's made a little progress, but I'm still concerned because, letting her know that you're going to call on her and all those things really aren't teaching her how to read. And so they said, “Well, we want to evaluate. What do you think about an evaluation?” And they were really tiptoeing about around asking that.

And I was like, No, yes, I want to do it. I want to do it! Like because I rather find out what's going on, if something is going on. I was very open to the evaluation and I could tell just how they were tiptoeing around it.

Like, we don't know if we want to say that. How is she going to respond? You know, and having worked in the district, in the position I worked in, I was very good at reading body language because I had been in a role where I had to have hard conversations to support principals.

So I was always assessing because now I'm like, okay, this is my child. Let me put in all the skills that I have. And so we had her evaluated the end of first grade, and they came back and said she had a specific learning disability, SLD.

They also wanted to do occupational therapy, OT assessment, and I didn't understand any of it. It was like mumbo jumbo to me. It was like peanut club, womp, womp, womp, womp, womp. I was like, what?

But how are we going to teach her how to read? I noticed, like the more I kept saying, how are we going to teach her how to read? Oh, we're going to give her more time.

And she'll be able to get more time and all these accommodations, and even then, I didn't really clearly understand the difference between accommodation and remediation or intervention. I didn't really get all of that.

But I kept asking how she I learn how to read. And so at the end of the at the end of that meeting, one of the psychologists slipped up and said, ‘well, you know, when children have dyslexia, we normally do…’

Winifred: And I said, oh, she has dyslexia? Because, now I felt like that was something I understood and something I could research. And she said, Oh, no, no, no, no, no. I didn't say that. I said, Well, how do I get her evaluated?

What do I do? And I was like, What? Thinking to myself, What's going on here? Why are they stumbling over words? Like what? So I left that meeting feeling like, Oh, they're hiding something. They didn't tell me something.

And I went to my car like so many parents do, and I cried. Because, I was like, Oh my gosh, she has dyslexia. They say she might have dyslexia, but they're not telling me something. And I called my cousin crying and she's like, get it together.

Because she's an attorney, she deals in special education law in college. And she mentioned some resources. So as I started researching within a matter of three days, I was told I needed $22,000. That included an expensive summer tutoring program and then an independent educational evaluation where I could go and get someone specialized to do a full comprehensive evaluation.

I thought, oh, my gosh, I don't have $22,000 in three days. And I called her pediatrician, crying, a lot of crying, and her pediatrician connected me with a psychologist who walked me through some steps.

She said “I need you to do this. Go to this website. You don't want to over-assess her. And if she has dyslexia, this is what you need to do.” And she didn't speak to me as if she was afraid of the word dyslexia.

She was just like, okay, this is what we're going to do. And I followed everything this woman said.

And so I followed the steps that she told me. And that led me to a grassroots organization called Decoding Dyslexia. Decoding Dyslexia Maryland, and I connected with parents of children with dyslexia and other language-based learning disabilities. I became a state leader.

Winifred: I was going to Annapolis to fight for legislation. I just immersed myself. And the thing is, is that I wasn't afraid to say I didn't know. I wasn't afraid to show up at a meeting, and there's nothing but white women and here’s me and they're talking about legislation and policy.

And I don't understand a thing. I'm sitting there like, okay, I'm taking notes. Okay. Okay. After this meeting, I'm going to go to the corner, and ask this woman, what does that mean? Right. And I wasn't afraid and I didn't feel a certain way when folks offered me help. Well Winifred, I could meet with you to go over the IEP, I'm like, “Oh, you can meet with me one on one? Yeah, let's do that.”

Winifred: And so I just immersed myself in that space. And then one thing led to another thing, to another thing. And so I started a chapter here in Baltimore City, and I did some training so that I could better understand the process, so I could navigate and help parents find the right solution. Because there's now I'm finding there's a lot of help out here, There is a lot of noise. And if you don't know, you can be taken advantage of.

So I wanted to make sure I understood so I could weed out the bad apples if you will. I wasn't afraid. Again, I did not let fear stop me. And I would tell parents, you miss 100% of the shots you don't take.

Winifred: It’s kind of like when you buy a car and nobody has your car, right?

And then you get your car and everybody has your car. So it was like everywhere I turned, oh, I'm dyslexic. Oh, well, my child is struggling to read, and it was like a snowball effect.

Arthur: I love that analogy about nobody has your car and then you see it everywhere.

Winifred: Nobody has your car, and then you're at a light you like, wow, there's the car just like mine in front of me and in that lane to the left.

Arthur: Right. So true, Wow. Yeah. Thank you for sharing that, because I know it will be a very helpful to a lot of the listeners, people who are streaming the podcast because, I like what you said that you weren't afraid to ask questions and, you know, to say that you didn't know something and you just, you were interested in finding out solutions. And I think, as you said, that's what parents do.

Winifred: And Arthur let me just add that I say that because. It was a very white space. And this is a very sensitive topic. Your child is struggling to read and you don't know why.

And you go into a space and it's all white. I had the experience of going to school at a PWI-a predominately white institution. I was an athlete, I went to a PWI. I had professors telling me, Oh, well, you won't get any special treatment, you jocks won't get any special treatment, and look at me dead in my face. I'm not the only athlete in this class. You know, I had the experience of teammates saying, “Well, I don't know if you people like to bowl.” You know what I mean?

Like I had those experiences when I got out of college, undergrad, and two of my first jobs out of college, I was the only black person in that role. I remember Katrina happened and I just felt so heartbroken.

And I'm like, I have a two-bedroom. I could give up one of my guest bedrooms. Right. For somebody to have a place to stay. And I remember talking to some young white some white people, white colleagues, rather.

I was a little older because, I was a nontraditional student, but I looked younger. So they were probably 23, 24, and I was about 27, 28 and paid my way through college working, took me ten years to earn my undergrad.

I lost my mother during that time and they were just talking so recklessly. Oh, well, they should have had another bank, why did they have their money all at one bank? And I'm coming from North Carolina, although I'm originally from Brooklyn, New York.

I just relocated from North Carolina, where I remember there being only one bank. And because those folks knew me when my mother got sick, they were able to help me. Right? So I'm taking this personal, like, what do you mean?

And I'm looking at all these black folks dying, and I'm like, if I have an extra bedroom, I want to help. And I was very vocal and I remember we went to a meeting and they said, Oh, well, don't say anything about Katrina or poor black people because, Winifred is going to have an attitude. So they were saying that about me and I let that muffle my voice.

Winifred: When you're the only black person at a job, you can't speak for all black people, right? And I let that muffle my voice. Then I went on to the next job where I was the only black person, and my voice was muffled, and so when I got in this space, I didn't feel like I don't belong here or I can't ask questions because I've been navigating this, all through undergrad. And then when I started working and then I went to graduate school, a PWI.

So I had that advantage or that privilege if you will, of being in an all-white space and figuring out how to navigate. So I was just doing the same thing I'd always done, but now I got to navigate for my daughter, and parents would be in this space like ‘No, I feel uncomfortable”.

Because now you want me to talk about something that we don't talk about culturally. We don't talk about learning disabilities culturally. And now I'm in this space with these white women, and I don't feel like I have anything in common with what I don't even feel comfortable saying,

“I don't know what that word means.” Right. Because as black folks, when you're in these white spaces all the time, you have to be the cream of the crop. You've got to dot every I, and cross every T. And so now you're bringing this into something that's a sensitive topic and it's about somebody's child, right?

And so I really reflected on my own experience after the unrest with George Floyd and having so many folks say Black Lives Matter or not saying Black Lives Matter and I had my own experience that showed me that everybody that's in my space is not really for us.

And I had to really sit with that, and that really gave me the push to say, you know what, we are going to create the Black and Dyslexic podcast and call it that because I'm going to use the voice and the platform that I have so that I can reach more black and brown people.

And earlier, I talked about having the courage to do it, and that's what really pushed me at that time because it all started with a hashtag. I started with the hashtag on Instagram, black and dyslexic, and I was featuring celebrities and athletes.

And then I thought, well, everybody can't relate to a celebrity or athlete. And then I started doing the everyday dyslexics and so then I had another bad experience with that name. Like folks were like, why do they have to be black?

“Oh, it's people like you. You just put the black on it every you know, it affects everybody.” And one of my friends said to me, a friend and mentor, and she's like, you know what? You keep that going.

Winifred: It’s necessary. It's needed. You get funding, you make it a program. And that's how the black and dyslexic podcast came to fruition because I went out and got funding for a dyslexia awareness campaign, and, and I wrote that particularly the grant app talking about when undiagnosed learning disabilities trigger mental health issues, depression, low self-esteem. And then we know that a study out of Texas showed that 80% of inmates were illiterate and 40% were dyslexic. So we wrote that up to raise awareness in the black and brown community, and that's what really fueled that podcast and brought it to fruition.

Arthur: I love stories that start with, you know, maybe a not-so-happy thing, but it turns into something, something great and something that is so beneficial and again, sharing such necessary and important information to everybody.

So thank you for this conversation. And before I let you go, can you just share some resources with everyone; websites or books or anything you can think of that would be helpful to anyone who is listening?

Winifred: Sure. I'm going to just plug myself and my organization so you can follow us on social media, our website, Instagram, Facebook, @SoAllCanRead our website is soallcanread.org we’re on Instagram, the Black and Dyslexic podcast.

Also, Decoding Dyslexia, where we have chapters in all states and it was a great, great network of support and parents who knew how to navigate the system. We've got Decoding Dyslexia Maryland. There's Lit Moms in North Carolina.

North Carolina is very near and dear to my heart because I moved here from North Carolina. So I stay, I keep a pulse on what's going on in North Carolina. There's also a favorite website of mine is understood.org.

Understood.org. It is practical, digestible, information. And I even said to you before we started this, I don't do a lot of the big teacher talk lingo, because, I would not have understood that. I did not understand that when I started this journey and understood.org has very, very practical, digestible information.

Another great resource is Wrights Law, and like someone told me, go to the website, stay on there 5 minutes, use a timer and then get off. And while you're on, sign up for the newsletter. Let them send you the newsletter and then immerse yourself in special education law because it is overwhelming.

Okay, you got to take little tidbits of it, but definitely follow me on social media @soallcanread.org and you can reach out to me and I will respond.

Arthur: Yeah. So thank you again for taking your evening to do this.

Winifred: I appreciate you for having me. This is my pleasure.

Arthur” Yes. So you have a good night and I will be in touch soon.

Winifred: All right. Thank you, Arthur.

Arthur: You’re welcome. Bye-bye.

Arthur: We thank you for listening to this episode of the Inclusion Think Tank podcast. This podcast is brought to you by New Jersey Coalition for Inclusive Education, NJCIE . Be sure to subscribe on YouTube, Spotify, or Apple Podcasts, and don’t forget to follow us on social media @NJCIE. Until next time.