Disability Book Week

Disability Book Week with Mary Mecham 

In this episode, we sit down with Mary Mecham, Director of Disability Book Week to learn about this year’s inaugural event. Mary is an avid reader, advocate, and mother of two girls with rare genetic disorders. She has teamed up with Parish School Teacher Caralou Smith to start Disability Book Week as part of their capstone project with Texas Partners in Policymaking, a leadership training program designed to empower adults with developmental disabilities and family members to become effective advocates for policy change. Mary says that she was inspired by her own daughters to search for books that had main characters with disabilities. During her search, she started to meet authors with disabilities who felt inspired to write about their own struggles in their published literary works. Mary got so excited about their journeys that she knew she needed to share all these incredible books and authors with the world!   

Throughout the episode Mary discusses the process behind picking books, teaming up with authors, and the importance of having a panel research and vet at books. She also talks about different activities happening throughout the week to celebrate and ways listeners can get involved. However, the most powerful part of the interview is when Mary discusses WHY elevating the perspectives of people with disabilities is important for everyone! 

Links: 

Disability Book Week Website 

Disability Book Week Facebook 

Texas Partners in Policy Making Website 

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The Parish School Website: The Parish School 

 

Stephanie Landis (00:06):

Hello, and welcome to Unbabbled, a podcast that navigates the world of special education, communication, delays, and learning differences. We are your host, Stephanie Landis and Meredith Krimmel, and we're certified speech language pathologist who spend our days at The Parish School in Houston, helping children find their voices and connect with the world around them.

Stephanie Landis  (00:26):

In this episode, we sit down with Mary Mecham director of disability book week to learn about this year's inaugural event. Mary's an avid reader, advocate and mother of two girls with rare genetic disorders. Mary is teamed up with Caralou Smith, a teacher here at The Parish School to start disability book week. Mary says that she was inspired by her own family to search to find books that had main characters with disabilities. During her search, she met authors with disabilities who wrote about their lives and struggles. Mary got so excited about their journeys that she knew she needed to share all of these incredible books and authors with the world. Throughout the episode, Mary discusses the process behind picking books and the importance of having a panel to look at them. She also talks about the different activities happening throughout the week to celebrate and ways listeners can get involved. However, the most powerful part of the interview is when Mary discusses why elevating the perspectives of people with disabilities is so important and beneficial for everyone. Hey, welcome! We are so excited to have a very special episode today. We have our guest, Mary Mecham. She is a mother and an advocate. She's here to talk to us about disability book week. It's coming up on April 23rd through 29th, and she'll tell us all about it. So before we jump into what disability book week is, I wanna hear a little bit about what got you started in working on this.

Speaker 2 (01:53):

So I am partnering with one of your teachers here at Parish, Caralou. And when we found out that we both, we found out when we were both associated with Parish, with my daughter coming here and Caralou teaching here we wanted to do a capstone together and we picked disability book week because when I was reading to my daughter, who has an intellectual disability and severe speech impediment, I realized that I didn't have a single book in my entire house that featured a character with intellectual disability or with a speech impediment. And I really wanted her to be able to connect with a book. And so that kind of launched us into this journey of trying to find different books that feature characters with disabilities or written by authors with disabilities.

Speaker 1 (02:45):

Interesting. You mentioned it's a capstone project. You're working with Texas partners and policy making?

Speaker 2 (02:49):

That's right. So Texas partners and policy making is a network of different disability advocates. And we work on training people with IEPs on how to talk to politicians on different things that affect the disability community and how we can empower individuals with disabilities in Texas.

Speaker 3 (03:11):

So you work directly with parents?

Speaker 2 (03:13):

We work with parents, we work with politicians, we work with schools, we work with everybody, basically. <Laugh>

Speaker 3 (03:19):

What kind of training do you have to go through to do that? Sounds intense.

Speaker 2 (03:23):

It, it is, it is an intense class. It's a nine month program where we meet up and learn about different aspects that affect people with disabilities. We have full weekend courses where we all sit down and meet together. We have presenters, we do projects, we have homework, whether that is testifying at a school board meeting, or we just recently all testified to different members of Congress about different bills that would affect people with the disability or on bills that would affect different aspects of life for individuals with disabilities.

Speaker 3 (04:01):

And this is for a wide range of disabilities?

Speaker 2 (04:03):

For a wide range of disabilities, everything from autism to intellectual disability to rare diseases. You name it, we've got it.

Speaker 3 (04:12):

Interesting.

Speaker 4 (04:13):

So what got you started on, on wanting to be a part of this project and what inspired you to focus on book and book awareness? I know you said you're your daughter, you didn't have any books for your daughter. Is that your inspiration so that she could see herself in literature?

Speaker 2 (04:26):

Yes. So one thing with people with disabilities is we are, you know, a good 10 to 20% of the population. And yet we're only represented in about 3% of literature and even lower are people with an intellectual disability. It's eye-opening to see all the different underrepresented populations. I, I really wanted to raise awareness and promote inclusion for people with disabilities in literature, so that we can not only bring awareness to our specific disability, but also it's much less threatening for people who are not familiar with disabilities to pick up a book and read a book and see the world through someone else's eyes, as opposed to just going up and asking someone straight up about their disability, because that is very, very intimidating for many, many people you worry about saying the wrong thing or doing the wrong thing, that you're accidentally gonna be offensive. And when you're reading a book that was either written by someone with a disability, so they articulate, you know, here's how I experience life. It increases your empathy and your awareness.

Speaker 4 (05:39):

In a safe way.

Speaker 2 (05:40):

In a safe way, Yes!

Speaker 4 (05:42):

That's great. That's great. So tell us how people can get involved with disability book week. What can they do? How do you participate or how do you be a part of it?

Speaker 2 (05:51):

So on our website, disability book week.org, we go through several different ways to get involved. So schools and libraries can set up displays and feature different books that are either on our recommended list or that are popular. Wonder, I mean, Little House on the Prairie, has someone with blindness and the Brother Band series has an amputee. There's lots and lots of great books that kids love. So setting up displays for schools and libraries families, individuals can just go and pick up a book. Also if you follow authors with disabilities, that's great reviewing their books. Authors love, love, love, love, love, good reviews on their books. And a lot of authors with disabilities really struggle with the marketing aspect of getting their book out there. And so by going and promoting or by going and reading these different books, you can support an author with a disability in their career just by going and reading their book and leaving a positive review.

Speaker 3 (06:57):

Awesome! I think seeing yourself in books is so huge. I know that one year, some of the elementary classes did a whole study on like people with dyslexia and then authors that had dyslexia. And I had no idea there were so many amazing authors out there that had dyslexia, but, I think it's just eye opening for kids that they're like, oh, like that's that's me. And even though reading is hard, I could still be an author or I could still be an inventor or an actor. And other thing we've done similar things with famous people who stutter and all of that is just life changing. And like you said, for people too, I think when you don't know somebody that has a disability in your life, it can feel uncomfortable to interact with them. Or you don't know how to talk to your children about people's differences and having a book in your home. Even if that's not something that's already in your life is an easy way to jump off and start those conversations.

Speaker 2 (07:58):

Oh, absolutely. And like you said, it's really eye opening to see what people can do. One of our panelists we have, so we have a team of 12 different disability panelists who go through and do sensitivity reading for all of the different books that have been submitted. And one of our panelists is a 12 year old girl that is deaf blind with dyslexia, and she has been reviewing several different children's books to see how accessible those books and pictures are for the low vision community, which is something I have never even thought about. But when I started talking to her, I started to realize that and then when we started working with her, we started finding all these other death, blind authors. And I was thinking, how inspiring and what shocked me is when I told people about that, they're like, well, deaf, blind people, they, they can't read. I was like, no, you, you can, you can read, you can be an author. You just need to use different adaptive. You just need to use other resources to get your work out there. And so stories like that, I I'm absolutely amazed.

Speaker 3 (09:07):

Yeah.

Speaker 4 (09:07):

That's amazing, at 12 years old to

Speaker 2 (09:10):

Participate. Twelve

Speaker 4 (09:11):

Years old changing people's ideas and thoughts about what it means to be blind and deaf and that you can be blind, deaf and dyslexic and be on a panel that's getting the word out there about disability book week. That's awesome.

Speaker 3 (09:24):

And I love it. It's a panel looking at it of people who are living it and in it, because like you said, you can be a wonderful advocate for somebody and have the best intentions, but unless you've lived that experience. You don't know what to look for. And that can be in anything. I mean, like, I even think I'm buying the right clothes for my kid and they're like, no, this sensory thing is driving me crazy. And I'm like, how I don't understand. So just living somebody else's experience is hard, but if you have them involved in it, then that changes your whole perspective of

Speaker 2 (09:55):

Oh, absolutely. And one common plot line that we're running into is authors who have no experience with disabilities are trying to be inclusive. And so they write something and the story goes once upon a time, there was a person with a disability and they went through terrible things and got cured. And then they lived happily ever after, which is actually not helpful. And that's not what we're going for because people with disabilities, the, this is a lifelong condition for many, many, many people. And by perpetuating the myth of you will only be able to live happily ever after once you've been cured of your disability is very damaging mm-hmm <affirmative>. And most people don't real realize that.

Speaker 3 (10:37):

Yeah. Yeah. Especially to hear for children mm-hmm

Speaker 2 (10:41):

<Affirmative>,

Speaker 3 (10:41):

Mm-Hmm <affirmative> because then it implies one that there's something inherently wrong with how they were born and them, and two that they have to not overcome all the struggles with it, but then changing inherently who they are

Speaker 2 (10:53):

Exactly. Imperative

Speaker 4 (10:54):

For these children. Like, you know, of like that you have to overcome your condition to live a happy life. That's a false narrative. That's not true. So very important to get the truth out there. And I love that part of your program is, is promoting authors with disabilities, not just books, that highlight characters. But, but people who've lived a life and know what it's really like to go out and share their story or create a story that, that shares their experience is just really great.

Speaker 2 (11:24):

Oh, absolutely. And I've been loving reading all the different books that have been submitted because when I read those, I was like, oh, I've never thought about one book that I read was needing normal and its it's written from the point of view of a girl with autism and the author has autism as well. And so it's really interesting to see how she interprets different social situations where I would interpret it completely differently, but she doesn't. But all of a sudden I start to understand and sympathize with her point of view with her Understand or her interpretation of that situation. Yeah. And so it's been really, really fascinating to me to read all those different books.

Speaker 3 (12:07):

How many books have you read?

Speaker 2 (12:08):

More than a hundred. Wow. Since January <laugh>

Speaker 3 (12:12):

Very busy. Are, are they mostly picture books or some of them chapter books or are you trying to find a range?

Speaker 2 (12:18):

We have a range. So the majority of what we have is children's books, but we also have a young adult and adult section. We have several nonfiction from things like how to, how to appropriately interact with someone who's blind, like a, a helper's guide to how fast you walk. Do you say about things in front of them? Like how do you address it? What do you do? A lot of questions that people have that they don't know the answers to. So from non-fiction books like that to cute little children's books that you just read to talk about, you know, here's my brother with autism and he's normal just like you are with <affirmative>. And I really love reading some of those books for myself, but now also sharing them with my family.

Speaker 3 (12:59):

Yeah. Do you have any favorites you wanna shout out?

Speaker 2 (13:02):

Oh my goodness. So many, so many I really did enjoy the Needing Normal. I always loved the Brother Band books, but those ones are already wildly popular. With the children's books. I really enjoyed Everly's Sister. I really enjoyed, I Am Normal, And So Are You, and I also really enjoyed, The Extraordinary, A Children's Guide On Rare Diseases. So, so many though, I, I don't think I could even list all the ones that I love. But they were all listed on the website. And another thing that we've done with disability book week is we've gotten proclamations from different Governors, from different Mayors all over the United States, encouraging them to participate in disability book week. And that's been really fun to get the support of different elected officials all over the United States. And to see the advocacy efforts of either self advocates with a disability or loved ones of someone with a disability. There's a boy in Oklahoma, who's 16 years old and he submitted the proclamation on behalf of, of his brother with a rare genetic condition. And I just loved that. And I love hearing these stories of the different advocacy efforts all over.

Speaker 3 (14:27):

Yeah.

Speaker 4 (14:28):

Can you tell us the website again in case people wanna go and check out that list of books?

Speaker 2 (14:32):

Yes. So it's disabilitybookweek.org. We have a list of the books. We have a list of different authors. We have videos, we have the downloadable list of all the books that we've recommended so far. And we have, and we're on Facebook and Instagram and we're gonna be doing Facebook lives with different adult day programs and groups out there that are asking for authors to come and speak to their school or library bookstore or whatever their organization is. And we're really, really excited to see everyone's involvement

Speaker 3 (15:09):

And we'll make sure in our show notes to put links to all those things so they can find you really easily. Awesome. Thank you. You talked about pairing with libraries. Are there any libraries in Houston that are partnering with you where people can go and look for displays?

Speaker 2 (15:22):

Yes. So the Harris county public library is participating and several of those librarians are very, very supportive. We actually just shot a video with the Catherine Tire Branch Library on how to ask your librarian to participate. And that video is up on our website. We have different schools. We already talked to Congresswoman Lizzie Fletcher. She's a big proponent of literacy and there's different group homes. So the Arc of Katy is having authors come out twice and then they're going to have their participants make their own little book. So that adults with disabilities at this program are able to be their own little author for the day. And there's so many different creative ideas that people are coming up with to participate. And I absolutely love hearing about it.

Speaker 3 (16:17):

I also like that you said you're making the video of how people can become advocates themselves. Mm-Hmm <affirmative> because I think when you hear of all the amazing work you're doing, it can become overwhelming for people and be like, wow, she's doing all that. Like what can I do? But there are even small things like walking up to your librarian and saying, Hey, have you heard of disability book week? Are you participating? Here's some information about it. And that's really powerful. Even just small little steps.

Speaker 2 (16:43):

Oh, it really is. And there's such a thrill that comes with knowing that you're making a difference with being able to go into your library and say, Hey, here's a flyer. Would you be willing to set up a display because I have a brother with down syndrome and would you be willing to put up a display so that he can see characters that are like him?

Speaker 3 (17:04):

And do you find that most librarians are willing?

Speaker 2 (17:07):

Oh, extremely supportive librarians, love setting up, you know, celebrate women's month, celebrate black history month. This is just another underrepresented group that we would love to shed a little bit of light on and, and spotlight.

Speaker 3 (17:22):

Yeah, I'm picturing the library that I go to and right above the checkout area, there's always a cute display of books and it changes so frequently. And, and I imagine that that would be a pretty easy ask to see if they pull specific books and you already have a flyer and list and just put 'em on up there. And I will say that it has worked on me like, like the gum and the checkout line. <Laugh> the book as I'm checking out, I'm like, oh yeah, I do want that one too.

Speaker 2 (17:49):

<Laugh> yeah, I do that all the time too. So, so many great recommendations that I just don't know are there until someone displays them for me. Exactly.

Speaker 3 (17:57):

Do you have any other easy steps that people can take to, to start dipping their toes into advocacy if they're interested in it?

Speaker 2 (18:06):

Oh, absolutely. One really easy way to get involved is going on social media and following different authors, different disability movements and seeing what they do. They always do cute little challenges. So, you know, taking a picture of butterfly hands for adrenal awareness month or wearing purple for sat V two associated syndrome whatever it is. And so those are ways that you can start participating in all these different movements and inclusive efforts participating in movements and inclusive efforts to become aware of some of the events out there. Because if you don't know what's out there, it's really hard to get involved. It's really hard to participate. So following different authors with disabilities, following and making sure that you read and review their books, that's a really, really big one that you can do sitting in your pajamas, in your bed. I've done that so many times. Those, those are the big ones. Yeah.

Speaker 3 (19:07):

Awesome. Anything else specifically that you wanna to, that we might have missed?

Speaker 2 (19:13):

Oh, the future of disability book week, moving forward. So this year is our inaugural event, but moving forward, we are going to be creating a nonprofit with a training program for students and any individuals that want to dip their toes into advocacy. So how-to write a request for a proclamation to your Mayor or your Governor, which is a lot easier than you would think it is how to be how to review a book and different things to watch out for when considering how inclusive a book is. And we're planning to are up a scholarship fund for students that are exemplary in their advocacy efforts with individuals with disabilities. So different things like that. We're also partnering with a publishing company to help authors with disabilities get published, and they're working exclusively with authors with disabilities. So, so many exciting things happening.

Speaker 3 (20:15):

Yeah. Very exciting. That is, yeah. This one small idea that just bloomed into something so much more.

Speaker 2 (20:22):

Yeah. It really, really did.

Speaker 3 (20:25):

That's great. We appreciate you coming and telling us about it. And we will look to speak to our own librarian <laugh> and make sure that we're doing something here on campus to celebrate that too. I am pretty sure Mary already took care of that. <Laugh> <laugh> but yeah, there goes my advocacy for the day. All right. I will go to my local library this week and see if they're participating. Thank you so much for sharing this with us.

Speaker 2 (20:49):

Thank you for having me. I really appreciated it.

Speaker 5 (20:55):

Thank you for listening to the UNbabbled podcast. For more information on today's episode, please see our episode description for more information on The Parish School visit parishschool.org. If you're not already, don't forget to subscribe to the UNbabbled podcast on your app of choice. And if you like what you're hearing, be sure to leave a rating and review a special thank you to Stig Daniels, Amanda Arnold, and Stella Limb for all their hard work behind the scenes. Thanks again for listening.