Diversability Amplified Podcast: Advocacy as the Parent of a Disabled Child with Author Kelley Coleman [S2:E9]
In this episode of Diversability Amplified, Tiffany Yu sits down with Kelley Coleman, author of Everything No One Tells You About Parenting a Disabled Child, to explore the transformative journey of parenting a disabled child and advocating for systems change. They discuss the importance of normalizing disability, unlearning negative messaging, and creating inclusive environments for both children and parents.
Kelley shares her insights on raising anti-ableist children, the power of self-advocacy, and the critical need for non-disabled people to engage with and learn from the disability community. This conversation is a must-listen for parents, caregivers, and allies striving to create a more inclusive world for disabled children and their families.
Kelley is featured in The Anti-Ableist Manifesto (Hachette Go, 2024).
About Kelley Coleman: Kelley Coleman is a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports draws upon over a decade of experience, including her own experience parenting a child with multiple disabilities. Kelley lives in Los Angeles with her husband, two boys, and her son’s trusty service dog.
Show Notes
Discussing Books and Advocating for Inclusion
Connecting With the Disability Community
Normalizing Disability and Unlearning Negative Messaging
Self-Advocacy and Self-Determination for Individuals With Disabilities
Raising Anti-Ableist Children and Advocacy Progress
Accessible Books
Summary
Quick recap
Tiffany and Kelley discussed their respective books, "The Anti-Ableist Manifesto" and "Everything No One Tells You About Parenting a Disabled Child", emphasizing the importance of equal access to information and advocating for systems change. They also discussed the importance of normalizing disability, unlearning negative messaging, and promoting self-advocacy and self-determination for individuals with disabilities.
Summary
Discussing Books and Advocating for Inclusion
Tiffany and Kelley discussed the upcoming release of their respective books, "The Anti-Ableist Manifesto" and "Everything No One Tells You About Parenting a Disabled Child". Kelley shared her personal experience as a writer and advocate for parent caregivers and individuals with disabilities, emphasizing the importance of equal access to information and the need for non-disabled individuals to advocate for systems change. Both expressed their passion for making caregiving more manageable and advocating for equal opportunities for disabled individuals. Kelley also highlighted the challenges faced by parents of disabled children, emphasizing the importance of focusing on the positive aspects of their children's lives and the need for a more supportive and inclusive environment for families with disabled children.
Connecting With the Disability Community
Kelley discussed the importance of connecting with disabled people and getting information about disability from them. She emphasized the need for parents to be in community with disabled leaders and to follow disabled content creators online. Tiffany asked about the biggest takeaways from the interviews and for tips on how non-disabled people can find and connect with the disability community. Kelley advised following disabled people online, attending events, and volunteering with organizations to learn from and connect with disabled individuals. She also stressed the importance of not tokenizing disabled people and treating them as fellow humans.
Normalizing Disability and Unlearning Negative Messaging
Tiffany and Kelley discussed the importance of normalizing disability and unlearning negative messaging around it. Kelley emphasized the need to acknowledge and unlearn one's own biases, and to approach conversations about disability with curiosity and openness. They also discussed the importance of focusing on points of commonality when engaging with children and adults who may have questions or stare due to curiosity. Kelley shared her experiences as a parent of a child with multiple disabilities, highlighting the need to prioritize the child's comfort and safety while also promoting understanding and acceptance. '
Self-Advocacy and Self-Determination for Individuals With Disabilities
Kelley and Tiffany discussed the importance of self-advocacy and self-determination for individuals with disabilities. Kelley shared her experiences as a parent of a child with multiple disabilities, emphasizing the need to stop apologizing for their child's presence and behavior. She expressed hope for a future where disabled individuals are fully integrated into society and have agency over their lives. Both agreed on the importance of providing opportunities for self-advocacy and self-determination, even for those with high support needs.
Raising Anti-Ableist Children and Advocacy Progress
Tiffany and Kelley discussed the importance of raising anti-ableist children and the progress made in advocacy over the past 15 years. Tiffany presented a framework, PAPUSD, for parents to be allies without taking up space where disabled folks should be decentered, emphasizing the importance of platforming, amplifying, partnering, leveraging privilege, sharing personal experiences, and decentering oneself in advocacy work. Kelley agreed with Tiffany's points and suggested that parents and caregivers should start with one action that resonates with them, as it will feel good and allow them to learn from disabled people. Both agreed that caregivers are not invisible and their stories matter, but should not be conflated with the disability community.
Accessible Books
Tiffany and Kelley discussed their respective books, with Kelley's on parenting a disabled child. They agreed on the need to make their books accessible to those who cannot afford them, suggesting they should be in every library. Tiffany offered to help promote Kelley's book in libraries, and Kelley provided her website for further information.
Transcript
12:39:32 Hi, everyone you've got! Tiffany, you here pronouns are she her? I'm a Taiwanese American woman.
12:39:38 With below the shoulder length, black hair wearing a blue top. And today I'm the host of this episode of diversity, amplified.
12:39:46 And we are doing a fun.
12:39:49 Miniseries while fun for me, because my book is coming out, called.
12:39:53 The Anti-abalist manifesto. On October 8.
12:39:56 And we wanted to interview a couple of the people whose stories are featured in the book.
12:40:03 And so one of those people is Kelly Coleman.
12:40:07 Who has a book.
12:40:08 That has come out, which I also have a copy of called Everything. No one tells you about parenting a disabled child.
12:40:14 And I'm gonna read her bio, and then she's gonna provide a visual description. So.
12:40:19 Let me do the formal stuff.
12:40:20 Kelly Coleman is a feature film development executive, turned author and advocate for parent caregivers and individuals with disabilities.
12:40:29 Her book everything no one tells you about parenting a disabled child. Your guide to the essential system services and supports, draws upon over a decade of experience, including her own experience with multiple disabilities.
12:40:42 Kelly lives in Los Angeles with her husband, 2 boys, and her son's trusty service dog.
12:40:47 So with that I wanted to say, Hello, Kelly! Welcome.
12:40:50 Hello! Thank you for having me my visual description. I am a white woman with below the shoulder link, straight hair. That's kind of pinkish. Today I have black cat.
12:41:01 A bright pink shirt behind me is graphically patterned wallpaper, and a copy of my book which.
12:41:08 Appreciate you.
12:41:11 Being with me on the journey of publishing. We have the same publisher, and I'm so thrilled for your book to be coming out.
12:41:18 And for the world to have that.
12:41:20 Yeah, it's it's coming up soon. But
12:41:23 Let's
12:41:24 So this is the second time you've been on the diversity amplified, so we'll do a little bit more of a deep dive. But I would love to just hear.
12:41:32 A little bit more, and you probably get asked this question a lot because I get asked this question a lot. But what made you initially decide to write this book.
12:41:40 Yes, so I was a writer in the before times before kids, before Covid, before all the things. My background is mostly in coming up with ideas for talking, animal movies.
12:41:52 Which is super fun. But I have no real world skills.
12:41:55 And I'm the parent of 2 amazing kiddos, one of whom has multiple disabilities. And this is the book that I swore I would never write
12:42:05 Because it just seems like, Oh, I'm I'm living in the world of paperwork and planning. Do I really want to sit down and write this.
12:42:13 And.
12:42:15 The thing that.
12:42:17 Push me towards. Yes, I passionately want to write this.
12:42:22 My son.
12:42:24 Who's who's just awesome. He.
12:42:27 Had was in a great.
12:42:29 Phase where all the medical things are lining up. And he was doing well, until one night they weren't, and everything was hitting the fan, and up all night with.
12:42:38 You know, trying to control seizures and vomiting, and, like all of the things that are really hard.
12:42:45 And.
12:42:46 The next day.
12:42:49 He was in in good shape, and we took him to a therapy that he absolutely loves in his play. For him.
12:42:56 And I took a moment to just sit down by myself.
12:43:00 And hit this wall of just.
12:43:03 Crying and being exhausted, and saying.
12:43:09 I can barely do this.
12:43:11 And I am, and not not the like parenting my kid, because he's.
12:43:15 Wonderful.
12:43:16 But the paperwork, the planning, the medical management, the physical.
12:43:22 Goes into the job of caregiving that can be very challenging.
12:43:27 I'm good at it. I have the executive functioning that I can put the widgets into the place to make them happen.
12:43:35 And I have every advantage in the world, and this is really hard for me.
12:43:42 And.
12:43:44 So many of my my friends, my son's friends.
12:43:48 Don't check all the privileged boxes that we do.
12:43:54 And the access to information.
12:43:57 Is so unequal.
12:43:58 And if I have such a hard time.
12:44:02 But I'm managing.
12:44:04 How.
12:44:04 Is this for my friends who don't check these boxes.
12:44:09 And.
12:44:09 I am so passionate about making the access to information.
12:44:15 So that we can.
12:44:18 Do the things and the paperwork that's never going to be fun, but that we have to do.
12:44:23 So we can navigate that and spend less time with all of that business.
12:44:29 More time, as parents.
12:44:32 Really.
12:44:33 Focused on her kids and loving them exactly as they are.
12:44:38 And separating the the challenges of the job of caregiving.
12:44:43 From.
12:44:44 Our kids are awesome like they're they're great.
12:44:49 Yeah. And I was looking down for a bit because I just wanted to find your quote in my book. But
12:44:54 But yeah, I.
12:44:55 I think, in talking to other parents who have disabled kids.
12:45:00 I.
12:45:00 And I'm not a parent of a disabled kid. I was a disabled kid once upon a time.
12:45:06 And my parent. It's non-disabled.
12:45:08 I feel like there's a period of time where it's like.
12:45:13 Urgent. Figure it out, mode.
12:45:15 And.
12:45:19 Then, after a certain period of time, maybe it's 10 plus years now. The child is.
12:45:24 You know an early teenager.
12:45:27 Where you finally come up for error. Or maybe you have figured out the systems in place or found better support systems for how to navigate and manage.
12:45:36 And so that's why I've been super excited that this book is now out in the world.
12:45:41 Can you talk a little bit about.
12:45:43 Kind of this transition from being a parent.
12:45:47 To then becoming a non-disabled disability advocate.
12:45:52 Yes, so I love this conversation, and I invite any correction or like Whoa! I can't believe you just said that from you and from anyone else.
12:46:02 I will.
12:46:03 Always be figuring out.
12:46:06 This space, and where I fit into it. As you said, I am not disabled.
12:46:11 One of my kids is one of my kids is not.
12:46:15 And how can I raise him to be.
12:46:18 Fully himself, to self advocate, and to not be.
12:46:22 Steam rolling through and talking over.
12:46:25 Him and other disabled individuals.
12:46:28 But at the same time not erase my own experience as a caregiver.
12:46:34 And how can I own the caregiving experience, not.
12:46:38 Inappropriately and weirdly own the disability experience that is not mine.
12:46:44 And yet acknowledge that disability. Emily Ladau, who I interviewed my book, who's.
12:46:51 Brilliant in her book. Demystifying disability is so great.
12:46:56 In my conversation with her, she said. Disability isn't your experience, but it gave structure.
12:47:02 To your experience.
12:47:03 And I felt like, yes.
12:47:06 That is it.
12:47:09 And.
12:47:10 There is an amount of advocating for systems change that I'm able to do that my child isn't able to do, partly because he's an 11 year old.
12:47:22 And he's way more interested in.
12:47:24 Airplanes and going swimming. Then he has been advocating for systems, change.
12:47:29 So.
12:47:31 It has been a journey, and will always be a journey of.
12:47:36 How can I make a difference in this space.
12:47:40 But not suck up all the air in the room, when I can be standing behind.
12:47:46 Disabled advocates who should be at the head of this.
12:47:51 And saying.
12:47:53 What do I have to contribute?
12:47:56 And how can I use that to.
12:48:01 Foster other caregivers experience. And how can I use that to foster people who are disabled.
12:48:07 Who want to.
12:48:10 Be in front of the advocacy, and stepping into that space more and more.
12:48:14 And.
12:48:16 Supporting those individuals and.
12:48:19 I'm.
12:48:20 Here to bring.
12:48:22 Your voice to the forefront.
12:48:25 Has been some of the most rewarding parts of this journey for me.
12:48:31 Because.
12:48:32 At the beginning of this journey, and you're right. The beginning of it like it is. It is just such a mess, because.
12:48:38 As a parent.
12:48:39 You're getting all of these messages of how we started on this journey with our son when he was an infant.
12:48:45 We're getting all of these messages of how tragic your, my kid is.
12:48:49 Because he's disabled. And how are you gonna do this? This is so awful. I'm so sorry.
12:48:56 And like, can somebody just tell me that my baby has amazing hair.
12:49:01 Like he's baby. He's great.
12:49:04 You're fighting against all of this.
12:49:08 Awful messaging against all of this internalized ableism that most of us don't even realize we had. I didn't realize I had it.
12:49:17 Until.
12:49:18 I was faced with all of these reasons why life was going to be terrible.
12:49:23 And
12:49:25 Cut to my kid now, who is just like he is the mayor of everywhere he goes, and he is this.
12:49:30 Like vibrant engaged.
12:49:33 Human
12:49:35 It is hard, it is messy and.
12:49:41 The shorthand to making this easier.
12:49:45 Is both in connecting with other families who have a shared or similar experience.
12:49:50 And in getting our information about disability from disabled people.
12:49:57 Parents.
12:49:58 I don't know how we didn't get that memo, but we did not get that memo.
12:50:04 People are so afraid to talk about disability, especially when you're thinking about having kids when you are pregnant. When your kids are young.
12:50:14 Because it is just seen as the specifically undesirable.
12:50:18 Thing, so it's so bad we can't talk about it.
12:50:20 No, it's actually just math.
12:50:23 It shouldn't be shocking. It can happen to anyone at any time.
12:50:27 From birth, or through circumstance of life.
12:50:31 We got to talk about this.
12:50:33 And.
12:50:35 The sooner we can be getting information whether it's.
12:50:39 The language, the facts, the.
12:50:42 Here's how to order feeding tube supplies from disabled people.
12:50:47 The sooner this becomes not.
12:50:49 Scary.
12:50:50 And it just becomes.
12:50:53 Part of.
12:50:54 A shared human experience.
12:50:58 Yeah, I I know you mentioned. I guess I have 2 part question which you mentioned, Emily and some of the people you interviewed.
12:51:05 For this book I would love to hear kind of if there were any surprises or big takeaways from the interviews that you did, and I know you got to interview the late Judy human as well.
12:51:17 And then.
12:51:18 I don't know if it ties into my second part question, but you talked about parents needing to.
12:51:23 Follow and be in community with disabled leaders.
12:51:26 And.
12:51:27 I think in some ways, years ago. I don't know if we were as quote easy to find now with the democratization of social media, but I don't know if you have any tips for.
12:51:38 Non-disabled people who are listening to figure out where to find those people.
12:51:45 Yes, so.
12:51:44 So 1st was about the interviews, and then second, was about kind of tips for for people to really be in community with the disability community.
12:51:52 Yes, so those those answers to those are actually closely linked.
12:51:59 So.
12:52:00 In my book I have interviews with over 40 experts, very many of whom are disabled themselves. That was very important to me.
12:52:07 And the biggest surprise was just how many people said yes, whether it was Judy human, whether it was Rebecca Coley of the Ford foundation, whose work I've been following closely for many years.
12:52:22 I was.
12:52:24 Hesitant to even reach out to a number of people, because.
12:52:28 They're doing this on high levels. And are they really gonna have time or interest for me?
12:52:34 And.
12:52:35 How immediately people saw the need for.
12:52:41 Connecting with parents. And having these real conversations.
12:52:46 I was so impressed and humbled by how many people said, yes.
12:52:52 Because they recognize that these conversations aren't happening.
12:52:57 And parents are not being trained in any way for this job of caregiving.
12:53:02 And even the conversation about disability just isn't.
12:53:06 Happening, so.
12:53:08 That was.
12:53:10 Really.
12:53:12 Amazing to connect with all of these leaders.
12:53:15 And a question that I asked. Rebecca Coley is exactly what you said is, I said.
12:53:22 Okay, so.
12:53:23 It's super weird. If I just go out. I'm like, Hey, you're disabled. Can we be friends like? No, that's not how life works. Don't do that. People don't.
12:53:32 And I said so.
12:53:35 I want to be in community with more disabled, because that's important to me.
12:53:41 And she emphasized the need for us to be friends with real life, disabled people, so that our children have real-life role models, who we know and trust. So they're not just seeking out people with shared experience online. Because that's scary.
12:53:58 And so I asked, like, How do we do that? And the 1st thing she said is you all? And you being me, being everyone else.
12:54:07 You already know disabled people.
12:54:10 Whether or not they have shared that information with you of their disability is their own business.
12:54:17 In the United States, one in 4 adults has a disability.
12:54:20 So again it is just math. Disabilities might be visible. They might not be visible.
12:54:28 So just know those people are already in your circles.
12:54:33 Fastest, easiest, and no cost way.
12:54:37 To be.
12:54:38 Following and getting information from people is going online. No one is obligated to share their story. Medical details with you in person, online or otherwise.
12:54:52 But so many.
12:54:55 Content. Creators and leaders are incredibly generous with sharing their experience.
12:55:01 Follow them online.
12:55:03 Curate your social media, feed, follow organizations, follow individuals.
12:55:08 Who are outside of your demographic on many levels, and especially.
12:55:14 Within different disabilities.
12:55:16 And show up to listen and to learn, not to comment with your 2 cents worth about all the great things you're doing.
12:55:23 But show up to learn.
12:55:26 Because you will.
12:55:28 Absolutely, learn.
12:55:30 And she also said, connecting with organizations.
12:55:36 Whether it is showing up to their events, whether it is volunteering in activities.
12:55:44 4.
12:55:45 A cerebral palsy, autism, rare disease, undiagnosed disease, your specific syndrome down syndrome, whatever it is.
12:55:55 There are so many organizations.
12:55:58 That you can plug into.
12:56:00 And when you have the opportunity to be in community with people who are self advocates, or who are just there hanging out.
12:56:09 Get to know those people.
12:56:12 As.
12:56:13 Allies, friends, humans.
12:56:15 Not as your token, disabled friend.
12:56:20 We don't need to tokenize people. We don't need to do the you're disabled.
12:56:26 Cool. I'm here to learn from you, because it is not anyone's responsibility.
12:56:32 To be your teacher or inspiration, or hold your hand.
12:56:36 Definitely, not.
12:56:38 But opportunities arise.
12:56:41 Just by getting to know other people as people, and just being curious about other people as.
12:56:49 Fellow humans.
12:56:51 Yeah, I I love that. I.
12:56:53 I have a chapter in my book called Well, originally was called Advocate with us, not for us. And then I also have a chapter called Be in community with disabled people.
12:57:02 But I wanted to talk a little bit about.
12:57:06 I mean, I think what you said around.
12:57:08 And I actually think, in my chapter on the B and Community, with disabled people.
12:57:13 Exactly what you said. You'll hear people say, Oh, but I like don't know any disabled people, and what you said.
12:57:18 You probably do. They just maybe haven't felt safe to talk to you about their.
12:57:23 Non-appearing disabilities, or.
12:57:26 Or maybe you haven't achieved a level of.
12:57:31 Yes.
12:57:32 Yes.
12:57:29 Or maybe they just don't want to as well. So.
12:57:34 Touching on your point around.
12:57:38 Curiosity.
12:57:40 Your quote in my book, which I'm gonna read is, I have a chapter called Ask Better questions.
12:57:45 And so I'm gonna read your quote and kind of want your so part of why I reached out to you. I know it's very short notice.
12:57:51 It was short notice for everybody. So if you didn't get.
12:57:54 Quoted in the book.
12:57:55 Everything was on deadline, past deadline.
12:57:59 But, interestingly enough, I actually in my work. Don't.
12:58:04 Engage a lot with kids.
12:58:07 And.
12:58:08 At the same time I get.
12:58:10 I've gotten questions around.
12:58:14 The.
12:58:16 Curiosity of kids.
12:58:18 And I saw a really great Instagram.
12:58:21 Post from another disabled person, who.
12:58:25 Said, the best thing you can do is affirm the child's curiosity. So if someone sees someone who is a wheelchair user and the kid goes. Oh, it's a wheelchair, you say. Yes, that's a wheelchair. But I wanted to read your quote.
12:58:38 Which again is in this chapter called, Ask better Questions, and then kind of wanted to get.
12:58:42 Your take on.
12:58:45 Curiosity of kids and around asking questions, and then maybe how that changes as you become an adult.
12:58:52 So. So here's the quote.
12:58:54 I don't know if this is the final one, either. This is the copy.
12:58:59 But it, says Kelly Coleman, of 2 boys, one of whom has multiple disabilities and the author of everything no one tells you about parenting a disabled child, says.
12:59:06 We have often had children and adults stare or ask questions about our son's feeding.
12:59:11 We emphasize that accommodations aren't something extra that my child, or any other disabled person is getting.
12:59:18 They're what he needs in order to fully participate in his world.
12:59:20 I can answer questions in real ways, and not pretend that my child is a superhero, because he has a disability.
12:59:26 He's a kid living his life and some similarities and some differences from your child, or sorry he's a kid living his life with some similarities and some differences from your child.
12:59:34 If kids ask what's wrong with him.
12:59:37 We can explain that having a disability is perfectly normal. And it's just part of our everyday lives.
12:59:42 We choose not to share our son's private medical information with strangers, just as they do not share their met private medical information with us.
12:59:49 The point isn't to ask someone their diagnosis. But instead to normalize disability and the child's curiosity.
12:59:55 In doing this you set your child up for future encounters with disability, which will, of course, happen throughout their life.
13:00:01 Many parents need to unlearn their own ableism and the negative messaging around disability that they grew up with.
13:00:07 Raising anti-abalist kids starts with acknowledging our own biases and normalizing disability for our children. Every opportunity we get.
13:00:17 I, I.
13:00:17 Do you have a reaction to your own? Quote?
13:00:19 I have. I have so many reactions to that. It's like that could be the entire episode.
13:00:25 Because.
13:00:28 First, st so much of that.
13:00:31 I did not know when I started my parenting journey.
13:00:34 And I think it's so important to acknowledge.
13:00:39 Where you are starting from.
13:00:43 And so many of us did grow up with this. Don't.
13:00:46 Pretend like you don't see that kid pretend like you don't see that adult.
13:00:50 Using a mobility device or a feeding tube, or who's moving or communicating like.
13:00:58 That that is so.
13:01:01 Inherently negative.
13:01:04 And my child is quite literally loud and proud, and the way he moves and communicates and cheers for the lettuce at the grocery store.
13:01:13 I know you see him. He knows you see him. So if you're pretending not to see him, it's super awkward for everyone.
13:01:21 And nobody wants to go through life like that.
13:01:26 So.
13:01:28 Be open to unlearning.
13:01:30 Anything and everything, whether it's by way of your child, or whether it's by way of being a person in the world.
13:01:40 We do get people.
13:01:42 Staring.
13:01:43 We do get questions.
13:01:46 And.
13:01:47 It is overwhelmingly coming from a place of curiosity.
13:01:52 If your child is staring at my child, this is not the 1st time we're not new to this, especially with the feeding tube, is a great concrete example. I had never heard of a feeding tube until my baby was getting a feeding tube.
13:02:07 And it's a great way to say, even as a parent you might not know what a feeding tube is.
13:02:14 And if your child is staring.
13:02:17 You can say, oh, I see that too. How cool is that.
13:02:21 And by saying, The how cool is that.
13:02:24 Or when I see kids staring, I say, Oh, you've noticed my kids feeding tube. How cool is that.
13:02:31 Then kids have planted in their head. Oh, yeah, that's cool.
13:02:34 And do you want to know more.
13:02:37 I have a child who is.
13:02:40 Very social, very outgoing, and is.
13:02:44 Totally comfortable.
13:02:47 With a level of, yeah, we can talk about the feeding. We can talk about the service dog. We can talk about the A/C communication device that he uses to communicate, and for him that is.
13:02:59 Comfortable.
13:02:59 I know many folks and many kids, certainly.
13:03:04 Who's whose disabilities are not visible.
13:03:07 Or even if they are, they are not comfortable sharing, or they do not feel safe.
13:03:13 Sharing.
13:03:14 And again, we we can't expect that from anyone else, and we need to lean towards our kids.
13:03:22 Comfort and safety level. 1st and foremost.
13:03:26 But when we can approach from a place of this is.
13:03:31 Just information.
13:03:32 Hey! This is how.
13:03:33 He eats. Do you like to eat smoothies? Oh, you do.
13:03:38 My kid gets smoothies.
13:03:41 All day every day, and we make them for him, and that's what his food do you like? Strawberries? Yep, he's getting strawberries in here, and that's.
13:03:47 It's like getting a smoothie for him.
13:03:50 And we can very easily find those points of commonality.
13:03:56 Again the the feeding tube, and it's like a smoothie, the service dog. It's not a pet, it's a working dog. But oh, you just said, you love dogs.
13:04:05 Cool us too.
13:04:06 And we can focus on those points of commonality.
13:04:11 And at the same time, and certainly.
13:04:15 For our kids, whose disabilities are not visible.
13:04:19 We can move through life, not apologizing.
13:04:24 For how our children exist in the world.
13:04:27 That was a shift, that.
13:04:30 We made because we realized our son, who again he is dancing and taking up the whole grocery store. Sometimes he is cheering loudly at the library.
13:04:40 That's just part of who he is.
13:04:43 Is there anything wrong with that? No, there's actually not.
13:04:47 And if he grows up.
13:04:50 Hearing us, apologizing.
13:04:53 For him not actually doing anything wrong.
13:04:57 That is not how we want our kid to grow up.
13:05:00 You know when someone says.
13:05:03 We're in a movie theater. He's like, Hey, can you keep your kid quiet?
13:05:05 And I say, actually, this is quiet for him. Thank you for understanding.
13:05:11 And it took a lot of effort on our part to stop saying, Oh, I'm so sorry.
13:05:17 Because I'm actually not sorry for him or his disability.
13:05:21 Or.
13:05:22 His.
13:05:23 Very large presence in the world that is him, and that is.
13:05:28 Glorious land! Wonderfully him.
13:05:31 We find ourselves saying, Thank you for understanding.
13:05:35 Without offering an explanation. I'm not saying, oh, he's disabled, he's autistic, he has cerebral palsy, he has a feeding tube. He has cortical vision impairment. He has communication differences. He has epilepsy like he's got all those things. He checks a lot of boxes because that's how he was built.
13:05:54 And we don't.
13:05:55 Apologize for that.
13:05:57 And it actually makes it.
13:05:59 More comfortable for everyone.
13:06:02 Because everyone else is hearing the message of.
13:06:05 Oh, okay, that's just how he is.
13:06:07 Instead of putting our family, or certainly our kid, in this position of Oh, he, poor thing! I feel so bad for you.
13:06:15 Like. If you meet my kid like you don't need to feel bad for him. He's great.
13:06:20 Yeah, I I've become a big fan of scripts and I love that one. Thank you for understanding.
13:06:27 And I think for a long time I didn't want to put words into people's mouths of like what they should and should, or I would tell them all the things they shouldn't say.
13:06:34 And I would get feedback that.
13:06:37 Now they know all these things not to say, but they don't know what to say, and then I'd be like, oh, well, I don't want to put word. But now I'm learning. Maybe I provide you with the starter script, whether it's thank you for understanding. Thanks for your patience.
13:06:49 Here's what I need right now. And then you adapt it to whatever works best for you. But I relate a lot to the stairs. I actually wrote my college essay about the stairs, but it's the stairs that.
13:07:01 Don't create an invitation for conversation.
13:07:05 But one thing I had.
13:07:08 For you you talked about when he grows up.
13:07:10 And I do get this question a lot about.
13:07:14 Even even questions that I get. Now, in my mid 30 s. About the relationship between me and my non-disabled parents.
13:07:22 And I would often tell people that even as a fully grown adult, I'm always going to be my mom's kid or my mom's child.
13:07:29 And so, as your kid gets older, who will still be your kid, even as he becomes an adult.
13:07:36 What do you? What do you hope the world looks like when he becomes an adult.
13:07:43 What I hope the world looks like when he becomes an adult.
13:07:47 On an idealistic and realistic sense are unfortunately different.
13:07:53 Idealistically. I wish that.
13:07:57 We saw disabled people.
13:08:00 Everywhere and in every space, because that's where they belong.
13:08:06 Unfortunately.
13:08:07 Society has a long way to catch up to get there, and I hope we get there in our lifetimes. I certainly hope we get there in my son's lifetime.
13:08:18 As a parent and.
13:08:20 In my interview in my book with Maria Town, of the Aapd. She talks about this with her own very supportive mother.
13:08:29 Saying.
13:08:30 She. She has been incredibly supportive in my journey.
13:08:34 And as a mom.
13:08:36 She will always see the hurdles and the challenges that we have had to face around disability.
13:08:44 And as a parent she she can't separate that. So I'm aware.
13:08:50 That because we've had to climb a lot of mountains.
13:08:54 To.
13:08:56 Fully find these supports and services that allow our son to thrive.
13:09:01 That will always be a part of that relationship, and the parenting journey.
13:09:06 So I need. I know that I need to surround him with community.
13:09:11 Who is seeing him, as who he is, without the baggage, that unfortunately.
13:09:16 I will always have, even as I am.
13:09:20 Fully supportive of him as a fully.
13:09:24 Realized Human.
13:09:27 What I hope for him.
13:09:29 Is that he has.
13:09:32 Full agency and self advocacy.
13:09:36 In his adult.
13:09:37 Life as he becomes an adult.
13:09:40 That he is a respected and active and contributing member of the community.
13:09:47 That he is able to have choice and self-determination.
13:09:53 In his.
13:09:54 Work.
13:09:56 Life relationships, what he's doing for fun, and how his future unfolds.
13:10:02 Which is the exact same thing I want for my non-disabled child.
13:10:08 I think.
13:10:10 We need to say.
13:10:12 What are we really hoping for for all of our kids?
13:10:16 Ultimately it is the same thing.
13:10:20 What that looks like for each of my kids.
13:10:24 Of course, that will be different. They are very different humans.
13:10:28 One of my kids does not have disabilities, and he's not someone who support needs.
13:10:33 I need to take into consideration.
13:10:36 My other child has high support needs. He will always be interdependent.
13:10:43 He will. He has intellectual disabilities. He has medical disabilities.
13:10:49 There are many factors.
13:10:51 That require support that we will need to take into account.
13:10:57 I need to take those into account so that I can put the support needs in place for him.
13:11:03 That he is not able, or might not in the future be able to put in place for himself.
13:11:10 And at the same time.
13:11:12 Teach him, even on the most basic levels, to self advocate from an early age.
13:11:19 Because to the extent that he is able as an adult, I don't know what extent that will be. We do not.
13:11:30 Intellectually or developmentally or medically, where he will end up.
13:11:35 I need to build in.
13:11:39 Every single level of self-determination I can for him.
13:11:44 And that starts.
13:11:46 For him with fostering his communication.
13:11:50 He has a good.
13:11:52 And still emerging level, of independent.
13:11:57 Much of which has only developed recently.
13:12:00 Independent communication is not the goal for everyone.
13:12:05 There are many individuals who will always need facilitated.
13:12:09 But look at what that is, and how you can show them that their communication about their own lives and wants and needs will be honored.
13:12:21 For my kid.
13:12:22 It might be saying.
13:12:24 Here's some shirts which shirt do you want to wear today? And when he points to that shirt.
13:12:29 That's the shirt he gets to wear.
13:12:31 Those small things are building in.
13:12:35 When you use your voice we will listen.
13:12:42 Yeah.
13:12:43 And something that I.
13:12:44 Connected with.
13:12:46 With regard to.
13:12:48 My own mom was.
13:12:49 Just a level of compassion.
13:12:52 Around, knowing that.
13:12:54 She's going to want to make sure things aren't so hard for me.
13:12:59 And at the time when I was growing up that was.
13:13:03 Not.
13:13:05 Centering. My access needs trying.
13:13:10 In an attempt.
13:13:12 In thinking that.
13:13:13 We wouldn't want to make things harder.
13:13:18 And and I think that's.
13:13:21 Yeah, there's always going to be this again, me not being a parent. But I feel like there's always going to be this protective.
13:13:28 This protective side, which is.
13:13:31 I don't want you to have to.
13:13:35 Encounter ableism, so viscerally right.
13:13:39 And if we.
13:13:40 Whether it's raising anti-abalist kids or really center accessibility.
13:13:46 Hopefully. Those fears will diminish a little bit more.
13:13:51 Your son's feeding tube isn't.
13:13:53 People don't.
13:13:54 We've just seen it, you know.
13:13:57 And I will say.
13:13:59 I was just talking to someone earlier in my app with in my advocacy, you know. Diversity.
13:14:07 The original version of diversity is turning 15 this year.
13:14:10 And I think back to the conversations I had in 2,009 to.
13:14:15 What I'm seeing happening now in 24.
13:14:17 And I don't know if it's a function of me being older and now surrounded, who are more mature in their or like later in their careers, as well.
13:14:27 But I have seen change, and I have seen progress from the conversations that I was having 15 years ago. So.
13:14:34 That hope is still very much alive for me, and.
13:14:39 Sometimes some other advocates that I work with joke. They're like Tiffany. Never lose that idealism that you have to dream really big because I had all back when I was living in San Francisco. I had all these big ideas.
13:14:51 But I wanna kind of close our time together. I know. When I had originally sent you the scheduling form, I said, What do you want to talk about.
13:14:59 And one of them was, how parents can be allies without taking up space where disabled folks should be centered.
13:15:06 And I wanna share a little framework that I had proposed.
13:15:11 In my book under an acronym, P. Ap. Usd.
13:15:15 This meet, but then, now that I look at it.
13:15:18 As I was like editing it like in the final stages. I was like.
13:15:22 There was probably a better way. We could have made an acronym with this, but.
13:15:26 This is from the chapter about advocate with us, not for us. So Pip, Usd, and I want to know like which of these kind of resonates with you, and is a message you want to leave for listeners around this like how parents can.
13:15:40 Can be allies without taking a space with where disabled folks should be centered. So number one is platform.
13:15:48 Give the voices of disabled people platform by inviting us to the table in decision-making processes, or voting us into positions of power.
13:15:56 2 is amplify.
13:15:58 Share a consume and disseminate work or content created by disabled people.
13:16:02 3 is partner. And actually, I feel like you've touched on all of these throughout our conversation. 3 is partner, engage informal partnerships.
13:16:09 With disability, led organizations.
13:16:12 I included Aapd in this list, but a couple others.
13:16:16 Number 4 that you.
13:16:18 Pap Usd is, use your privilege.
13:16:21 Leverage your privilege, remove access barriers, create equitable opportunities.
13:16:26 And ensure accessibility in your community.
13:16:30 5 is, share your story, which we have talked a little bit about.
13:16:37 Share your story and personal experience with disability to advocate for accessibility. But make sure to tell your story from your point of view.
13:16:43 And do not confuse your story with your disabled loved one story. They are related, but different.
13:16:48 And then 6. Decent yourself.
13:16:51 Respect the limits of your knowledge, and what you can do.
13:16:54 And descend yourself in your advocacy. Work.
13:16:56 Was there anything of that? Actually, I feel like we should have started with that and then gone? I feel like you covered some of it. Was there anything, any of that that you feel like.
13:17:06 You really want to hone in on what people take away from showing up for the disability community if they're not disabled.
13:17:14 Yes, so 1st all of that in spades.
13:17:17 That's why we created the acronym.
13:17:20 Yes, and also it's not hard.
13:17:25 At all.
13:17:28 Start with an awareness.
13:17:30 That this is what we need to do.
13:17:33 Start with.
13:17:34 You are not the center of your child story.
13:17:39 You are the caregiver. You are not the center of the disability world. You still have a full identity.
13:17:46 And.
13:17:48 Look at.
13:17:50 How you can.
13:17:51 Do this.
13:17:54 For me, sharing my story as a caregiver and not.
13:18:00 You know, stepping out in front of all the things in a way that is not appropriate. That's what works for me.
13:18:06 I wish all people, but especially all parents and parent caregivers, would look at this list.
13:18:13 I just.
13:18:15 Take a thing.
13:18:17 What is the one thing that resonates for you?
13:18:21 Easiest thing for you to do.
13:18:23 Are you sharing those posts.
13:18:26 From disabled leaders and content creators. It's just that.
13:18:30 Easy.
13:18:33 Are you?
13:18:34 Looking at your child story as all about you.
13:18:39 Or are you looking at your child as their own person?
13:18:42 And thinking about your own story.
13:18:46 Pick what is easiest for you, and start.
13:18:49 There!
13:18:51 And it will feel good. It will be easy.
13:18:55 And it will allow you to.
13:18:58 Listen to and learn from disabled people.
13:19:03 Which allows you.
13:19:04 To be a better.
13:19:07 Parent supporter, and loved one to your child.
13:19:12 And are we all kind of looking for that.
13:19:16 Yeah. And I think something important to take away from this conversation is that.
13:19:22 Caregivers are not invisible.
13:19:24 And I remember I was at a disability event recently, and
13:19:29 The disabled person was there. Their parent was there, and I was asking each person I was like, Hey, what's your name? And then I turned to a 3rd person who was there, and she goes. Oh, I'm just the caregiver.
13:19:40 And I said, You're not just the caregiver we need you. And so I do think again. It's.
13:19:47 Your story does matter. Just make sure you don't conflate it with.
13:19:50 The disability community.
13:19:54 I probably know the answer to this, but I wanted to know if you are plugging anything at the moment and want our audience to. If you have a call to action for them.
13:20:04 Yes, so.
13:20:08 I guess.
13:20:04 If it's to buy your book we can wave it out so that people see it.
13:20:08 So absolutely my book everything no one tells you about parenting a disabled child, your guide to the essential systems and supports. It's weirdly not boring, I swear.
13:20:19 And it's how the heck to do all of the paperwork and the planning, and like no one knows how to call their insurance company, and like financial and future care plans and Ips, as well as the advocacy and.
13:20:32 The.
13:20:33 All the other pieces.
13:20:36 Yes, go out, buy my book, tell everyone.
13:20:39 But ask your local library to carry it. The people who need this information the most.
13:20:45 Are the ones who can't afford to buy a book.
13:20:49 This book needs to be in every.
13:20:51 Library.
13:20:53 Medical Educational Social Service, Anyone.
13:20:56 Who could be delivering a diagnosis, or especially off early with parents and families on this journey.
13:21:04 We can fundamentally change how parents enter into this world.
13:21:09 Of caregiving, of being a parent.
13:21:13 To a disabled child.
13:21:15 And it.
13:21:17 Can be.
13:21:18 Better and easier.
13:21:20 And good.
13:21:21 But we need to get this information to everyone.
13:21:25 I love that, and.
13:21:26 I'm currently in the process of launching my book.
13:21:30 And.
13:21:31 If you're not sure how to request.
13:21:34 A book at your local library, you can actually search.
13:21:38 Request a title and the name of your local library, and it should come up with either a form you fill out, or something like that.
13:21:46 And hopefully, we can get your book into more libraries if people want to follow you. I know you're not super active on social media. Is there a good place where people can learn more about you or connect with you.
13:21:59 Yes, my website has all the social media and events and other info. It's Kelly Coleman com, and that's KELL. EY. Coleman com.
13:22:10 Awesome. Thank you so much for coming on. This episode of diversity amplified.
13:22:13 Thank you for having me, and for all that you are doing.