All About Advocacy | Spectrumly Speaking ep. 143
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IN THIS EPISODE:
While the Spectrumly team is on a brief hiatus, today we wanted to share some of our amazing past guests as they discuss a regular topic for us: advocacy! Featured in this episode are:
JENNIFER COOK – Learn more about her at www.jenniferotooleauthor.com / For her full interview click here.
SARAH SELVAGGI HERNANDEZ – Learn more about her at facebook.com/theautisticOT / For her full interview click here.
MORÉNIKE GIWA ONAIWU – Learn more about her at morenikego.com / For her full interview click here.
FINN GRATTON – Learn more about them at www.grattonpsychotherapy.com / For their full interview click here.
KELLY COONS – Learn more about her at kellycoons.weebly.com / For her full interview click here.
ABBY BROOKE – Learn more about her at www.walkingautism.co.ke / For her full interview click here.
CATINA BURKETT – Learn more about her at www.catinasway.com / For her full interview click here.
ESPERANZA PADILLA – Learn more about her at espiology.com / For her full interview click here.
LAUREN MELISSA ELLZEY – Learn more about her at laurenmelissaellzey.com / For her full interview click here.
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Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
For more about Haley, check out her website: haleymoss.net And look for her on Twitter: twitter.com/haleymossart For more about Dr. Butts, check out her website: cfiexperts.com
Have a question or story for us? E-mail us at SpectrumlySpeaking@gmail.com
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EPISODE TRANSCRIPTION:
HALEY MOSS (HM): Hello, everyone, and welcome to Spectrumly Speaking. I’m Haley Moss, an author, artist, attorney, and I’m also very proudly autistic. There’s something that you should probably know actually that’s going on: the Spectrumly team currently is on a brief hiatus. Life gets in the way, things happen. But that doesn’t mean we forgot about you, our very loyal and lovely listeners, we are extremely grateful for you. And I know that I am hesitant usually to speak for Dr. Butts as well. But I know that from both of us, we are extremely grateful for all that Spectrumly does, and all of the guests and listeners that we have, but fear not, we will be back soon in our usual format. But today, we want to do something special. We want to highlight the amazing voices and humans who have come through and shared the Spectrumly stage with us. They discussed a variety of topics, But there’s one thing in common that they shared, and that we want to be able to impart their wisdom and share back with all of you once again: the theme and power of advocacy. Advocacy is how we tell our stories, bring awareness to causes stand up for ourselves and empower our communities. So without further ado, let’s turn to the knowledge and wisdom of our amazing past guests.
HM: Let’s start with author JENNIFER COOK(JC), telling how she began her journey as a self advocate.
JC: In one week’s time, I had a psychologist, a psychiatrist and an OT say to me that I needed — they were they were observing the way I was doing certain things with the kids, whether it was teaching them at home, the weather, I was interacting with them explaining things to them. And they said, you know, you really need to start a school. And I thought that was hysterical because I had three young children like under the age of seven, I’m really young to start a school. Or they said write a book. And I thought well, that’s also kind of nice. Sure. But the one girl said to me, psychologists she said, you know, you really could change the way the world sees and understands people with autism. How do you say no to that part? Like, if that, you know, I remember thinking if that’s actually true, how do I say no. And basically what it was coming down to was the way I was interacting with them, I guess was different because I understood innately how they thought they thought, how they why they were doing certain things without having to ask even it just made sense because my brain operated in the same platform. So I sat down six weeks wrote a book because that’s what you do in your autistic sense in the manuscript. And this was our common publisher, Jessica Kingsley publishers. So this was a Monday and on Wednesday, I got an email from somebody named Jessica at JKP, did I have the rest of the book? I did, I sent it and then only only then did I realize as those of us on the spectrum are excellent at getting right to the toenail of the matter. And I missed this entirely that this Jessica person was in fact, Jessica Kingsley. So yeah, she it somehow my manuscript had landed on her desk. And so by Friday, I had a contract for the book, for the first book. That was in one week’s time. I know. And that is that doesn’t happen. I’m well aware of the fact that that is not usually you know, that’s not the typical experience. And before that first book came out, I already had a second book in the works. And that was the “Book of Social Rules”. First one was “Asperkids”, and then the second one was the “Book of Social Rules”. And it just, you know, it steamrolled from there. I think it sounds like I’m doing a humble brag, but really, it’s complete stupification. Like, how did this all happen? You know, the first talk I ever did was actually overseas. It was in Manchester, England. And I won speaker of the year award. It just blew up. And I I attribute that entirely to a history of musical theater growing up, used to being on stage I guess, I don’t know. But it’s sort of a way I would have imagined like you would experience in law what you’re used to being on a stage essentially a courtroom as a stage two, right?
HM: Little, little bit, but hey, I was a theatre kid too so…
JC: Well there you go. You know, It pays off. It’s like social skills training right there in front of everybody. It’s great. So yeah, so it just, it took off from there. And I was very fortunate, you know, Jess, Jessica acted as my editor in the beginning, that was amazing. And it really just one thing led to another to another to another to another. And then everything that you just read became so and it was literally all because, you know, because three people said something in a week.
DR LORI BUTTS (LB): That’s a, that’s a phenomenal story. You know, right. It doesn’t sound like you could be real. Right? Right. And you just went with it. You know, I mean, that’s the best part. Right? That you just kind of just…
JC: Yeah, you know, I say that the bravest thing I ever did was submitting that manuscript. And the reason for that is and like so many other girls and women on the spectrum, I definitely, you know, have a managed war I’ve dealt with tried to manage and dealt with my own overachieving perfectionist kind of tendencies. And so to put myself out there in a way that could have been, quote, unquote, rejected. That was to me looking back on it in my life story, you know, one of the moments where I’ll give myself a little pat on the back, it was definitely it was my bravest moment, I think, or one of my one of my bravest moments is putting it out there.
HM: Now, let’s hear from SARAH SELVAGGI HERNANDEZ (SSH) on how a desire to make change led her to become the first openly autistic person elected to serve in government.
SSH: Just the whole experience itself has been an interesting one. And when I came onto the school board, I was just humbled. I’m really, like, I’ve worked in the education system before, but to see the all the work and all the thought that goes into the process, it humbled me and actually really inspired me to let more people know that you can run for your local government, and you should, because you have insight that’s really important and government is, you know, supposed to be representative of the people and the people is you. Who better to represent you, then you. Um, but that so I actually got into the whole the whole situation, because I realized that nobody on my school board, and this is not a judgment, it’s just fact fact that nobody on my school board had any pediatric experience. And I’m like, how the heck are we on a school board? Like, let’s, let’s really, you should have people who have this strong experience. And so that’s why I ran. And on the school board itself, one thing that I love about being autistic is I’m a real stickler. Like, I can see if it’s a rule if it’s a protocol, and we’ve got to make sure that we’re following it. If we cannot follow it, we need to make sure that we update and correct the rule. And so that’s something I’m really good at. Because, again, I don’t have any ego attached to a rule. I don’t have a political party attached to a rule, I just know that we need to make sure that we’re creating, affirming and developmentally encouraging spaces for all children.
So when I got on the school board, that’s, that’s what I did first, and that really just to exist and to be in to bring my experience and expertise. I had the opportunity to serve on the curriculum committee, which was my favorite. I love curriculum. I love context. I love the way that we set up an environment to engage our, our students. And so that was really amazing to see. And I’ve never like just, I’ve always worked in a, like as a paraprofessional, before I was an OT. I just love the teachers. I don’t know, like it just, it was a really positive experience for many reasons. It was also a challenging experience. I don’t think that a lot of people know that. Well, they should know, elected officials, volunteer positions or not are protected by the ADA. So getting accommodations was not the best, and I’m currently in a lawsuit with my town over that. Um, but it’s very uncomfortable. However, Hayley, as you know, when we attach this first open first openly in all these things, I considered that not as like a spotlight, but as a responsibility. Because I knew I was in a space that know that people had been there before me. And they weren’t able to talk openly about their diagnoses or the way they were experiencing things. So I came in and said, No, we all have a right to be here. I’m gonna say, “I’m autistic, I’m autistic, I’m autistic” a million times, not for spotlight, but just to really reinforce that representative government includes all people. And so that was — I almost took it in my head, like, I really need to make sure that this is accessible. And I found a lot of places where it wasn’t accessible. And that’s, it’s to me, it’s not a judgement, it is a “okay, this is a fact, we’re gonna fix this fact, and we’re gonna fix this” because I really do believe — my, my dad gave me a pocket constitution. I really do believe in in, you know, the way in systems. However, I don’t understand why we don’t, more as a society, more proactively say, “Okay, this isn’t working. Let’s just tear it to the ground and do something different”. Like, I don’t know.
HM: It’s frustrating.
SSH: It is there, because it’s not it’s not personal. It’s not anything like. So when I found there is a very, when I found this barrier, yeah, I knew that I had to go forward with the lawsuit. And I am. And it’s been a very, it’s a brain heavy experience. But it’s important, because nobody should encounter these barriers again. And that’s, so that’s why I tell my story, and I do what I do.
HM: Next, MORÉNIKE GIWA ONAIWU (MGO) is going to share thoughts on advocating inclusively.
MGO: What I’d like someone to take away is no matter what group that you’re coming from, so I sometimes I had people come up to me and like, “Okay, well, what can I do? What What can I say, you know, I’m white, you know, you know, I’m an ally. You know, I totally want, you know, inclusion and equity. But you know, what, what can I really do? I don’t have the lived experience.” And I’m like, we can all do something, regardless of what background we’re coming from, we can all what’s most important is the message getting shared to you know, so whatever your maximum impact environment, your colleagues, your neighbors, your friends, your, you know, classmates, or what have you, who can you impact? Because there’s a ripple effect in terms of who they can impact and so forth. So a person doesn’t have to feel that they can’t say anything, because they are not a person of color. Or because they’re not a woman or non binary or LGBTQ, we can still, you know, by sharing the perspectives and the voices of others who’ve been through these things, and we’re getting the message out. And sometimes it’s even more powerful coming from someone who is a trusted insider, than from someone from an outside group because they can relate and they can understand they might feel safer educating themselves. So what I just don’t want anyone to fend for themselves.
But a lot of people will say, Well, I’m not an advocate. It’s not my thing. I don’t like Congress’s I don’t like going on stage. I’m just, uh, you know, there’s no unjust, whatever you are a chef, an artist, a teacher, a stay at home parent, a gamer, whatever you are, whatever you’re connected to, that’s your, that’s your little your stage, that’s your audience, that’s your group, that’s your place where you can make your impact. And you can, you know, ensure that people aren’t, you know, that you’re not, you know, ignoring or disregarding things that, you know, issues or topics or concerns that would that impact, you know, more marginalized groups. So when you hear people discussing, you know, issues related to autism, and they’re not talking about anything that would be you know, they’re not bringing up things that you know, would be relevant to not just one community for you know, the things you could be the one to bring up an issue that is also impactful for communities of color or for gender minorities, you can be the one to make sure that there’s representation and visibility that you’re not you know, on a panel with, you know, all white faces where there’s you know, it’s not acceptable for there to be all cisgender males, and then you know, one or no, you know, women or non binary individuals on on a panel or for there to be No, no racial diversity or very little. So that’s something that we can do, you know, I, on our own is basically be cognizant of it, and, you know, talk about it, and make it real and bring that, you know, that subconscious to the conscious. You know, one thing that I want to do, because I have the privilege of being primarily a speaking person, although I do have my, you know, sometimes I non speaking is, I will bring up, you know, how many do we have, you know, some advocates or some voices from you know, or non speaking in autistic community here? Or do we have youth voices or what have you, I’ll bring that up and mention it, because, you know, if I’ve actually someone not at the table or in the room, then, you know, I could have not been at the table right in the room. And so I just wanted all of us to know that we have, we can, our little one voice may seem insignificant, but if it is not combined together, we’re powerful.
HM: For more on inclusive advocacy, let’s now hear from author and therapist FINN GRATTON (FG).
FG: I think, as I as I’ve participated in both trans and autistic communities, something that’s come up a lot is in the trans community, the emphasis is on people being their authentic self, particularly around, you know, in psychotherapy and education and to, for trans folks, you need to be to figure out, we need to support your being who you truly are. And the Autistic community. That’s true in parts of the Autistic community, but in education and psychology, it’s often support to be somebody you’re not there trying to emulate neurotypical people how to look somebody in the eye, whatever the things are. And so it’s a, it’s a big difference to make that shift to what to wear, supporting your authentic expression, right, in every way, in your artistic way, as well as your trans identity.
LB: And getting mixed messages right can be so confusing.
FG: Be yourself, don’t be yourself.
LB: Right. How do you navigate that? That’s really a subtle, but very profound insight. I’m going to be thinking about that all day. What else can can from an advocacy standpoint, and supportive standpoint can people do?
FG: I think, you know, one of the biggest things to do is have people speak and participate. And find out what’s keeping them from being able to participate with autistic people, you know, there’s the sensory issues, there’s, you know, cognitive processing, there’s, there’s, and for trans people, it’s like, will you misgendered me, will you make a space for me? So find out what’s keeping them from being there. I think one of the biggest things that keeps people from participating is their story is not a pretty story is not a success story. I am a participant in the slam poetry community, which welcomes like “your story is not pretty”. You’re suffering, there’s a lot of trauma in both experiences, there’s developmental trauma and bullying and violence, and the constant micro-aggressions and community trauma, like you know, your people get killed. There’s a, there’s the difficulty of getting a job and we hear like these people who are doing something, but it’s still true that 70 something percent of people don’t have a job and the numbers are the same in the trans community, people are not, there is no protection from discrimination for trans people, in most places, there are in some cities, some place in some job sites. But they don’t have to really say that’s why they fired you. So to have people’s voices who are not just the pretty picture, I think is important and to work on what their goals are and what their goals are for advocacy, which may be social change more. So I’m just thinking, you know, in speaking and presenting to be able to bring in and surveys anything bring in voices of people who are suffering, which definitely includes you know, people of color in both communities are the most impacted by every kind of oppression because they’ve got additional intersections.
HM: Next, let’s hear from Kenyan activist and founder of Walking Autism ABBY BROOKE (AB), on advocacy without borders.
AB: It’s very important for us As a community, you know, to, to look to see the differences and to notice that know, the cultural differences and, and yeah, to and to keep that in mind when we talk about it.
LB: I think one thing that Abby spoke about that I always, you know, I, the internet has done a lot of not so great things. One thing it has done is made the world smaller and to be in a location where, you know, there’s not much information and to have that the support over the internet for Abby with it was really sounds essential and key. And that’s one wonderful thing. You know, that the internet can bring you, you know, find community and support across borders, and find, yeah, really amazing. I mean, obviously, you have to do a bit of work to find that support. While you’re, you know, you have to reach out but, but once you’re in, it sounds like you can find a lot.
AB: Exactly. I mean, I all I had to go on when I was diagnosed was, you know, my mom book, my mom’s books, which were Tony Attwood books, or Temple Grandin. What was that one? Thinking in pictures? I read that. I was like, well, that’s cool but I don’t like cows that much. It was hard to hard to find some sort of resemblance and some sort of, “Hey, that sounds like me”, you know. And with the, and with those social media groups, and like you say, the internet, you can find that. And that is so important in helping you accept yourself as you are. So many, so much diversity out there. And you. Yeah, it’s it’s it’s important. It’s really, it helped me so much.
HM: I think the internet is so great for those things no matter where you are. Because you realize, I think there comes a point, especially for young people on the spectrum is you feel alone, like you don’t feel like you know, anyone or you think that this is just you. And then you get on the internet, and you’re like, oh my god, there are so many people who get this.
AB: Exactly, when I when I joined that, that group for women, we’d like, wow, people actually get this. And I asked tons of questions. All the ones I’m surprised it didn’t kick me out. The questions was stupid, were why is this? But it was it was understanding what I who I was. And then it’s very odd to go back and put those pieces into Okay, so that’s why I did that. That’s why I did that, you know, it all makes sense.
HM: Let’s hear author KELLY COONS (KC) thoughts on using fiction, as a tool for advocacy.
KC: I think that the stories we tell, create the reality that we live in. So if we tell stories about autism that are primarily tragedies, or primarily like cautionary tales, like oh, don’t do this, or you’ll end up like this person, then that sets up autistic people to be viewed as, as caricatures of pity, essentially, and that’s really damaging. Meanwhile, if we tell stories about autism that say, your autism isn’t the problem, the problem is the treatment of autistic people, then that can change hearts and minds, and then that, in turn, can change policy. And, you know, it all starts with an idea. Nothing that exists was not at first imagined.
LB: I think that that it’s also more accessible and easier for people to — it provides a safer kind of entryway, if I’m explaining myself well, a safer entry way and to the concepts when it’s fiction as opposed to you know, an imagination as opposed to something that’s just kind of nonfiction I guess was the other word does that.
KC: Yeah, I think there’s also like, the fear of turning people off with like a lecture or like a lesson. But meanwhile, if they feel like the lesson was something that they came up with on their own All right, okay. It’s like I figured this out go me, which of course, like when any author writes something, they have a message that they would like to impart. Now, sometimes it doesn’t go through. And that’s a problem. But, you know, no author writes something in his like, I have no opinion on how my readers should view this.
HM: Now, let’s listen to and hear CATINA BURKETT (CB).
HM: What advice would you have for a listener out there that is a autistic person of color, and isn’t quite sure how to start self advocacy?
CB: Oh, wish I had the best answer. Because the only reason why I’m doing this is because of my background. If I wasn’t fundamental health field, and I wasn’t at the level that I’m at, I would not be — I wouldn’t self-advocate. And so if you want to self advocate, you know, I really can’t give that advice. But I do talk to self advocates, and I’m sharing their story and the people that contact me on my website, it is reaffirming. And it is good to hear that other people out there are dealing with it, but I wish I had more resolutions for them. I wish I had more direction for them. And the best thing I can do right now is try to encourage other mental health providers to recognize that so when I say other mental health providers, I’m giving a you know, I really want black people to recognize this too, because a lot of black health providers that I’ve known and talk to, they heard of it, but they don’t really want to be the one to step out and say we may have autism on top of the other issues that are not really recognized. So it’s like, you know, if everyone’s not saying that in the books, not saying that, I’m not going to step out and do that, too. I’m not going to make life that much harder. And I can’t prove it. So I just want that to be something that, um, you know, the health providers do just to get people recognized.
HM: I just think that’s super interesting, because I think of self advocacy, generally, just even just being able to stand up for your own needs and being able to get what you want to. And it’s just so interesting to think about how it also interplays with who we are as professionals, too. So I appreciate your honesty about that. There is no exactly like best advice to and I totally respect that. For me,
CB: It’s not and I wish I had more to tell you about self advocacy. But if it wasn’t because of my medical understanding of mental health, I wouldn’t do it. So it’s just being out there, say, you know, I’m on the spectrum, I was given a diagnosis, oh, I think I am. And just sharing your story that’s so hard. It’s difficult. So if and if I didn’t have the knowledge, I have about certain things out, and I couldn’t back it up, because people were questioning you about you. And I’m good. I can I can argue a case. I can really argue a case. So if any, you know, anyone in the medical field want to come at me and challenge me. You know, let’s let’s get it going. Because I’m ready. I am so ready. And I don’t know if I would do this if I didn’t have that readiness to defend. So that’s why, you know, I wish I can give you more on self advocacy, because it’s so hurtful when you you know, when someone argues you down and try to make you prove what you’re trying to tell them that you need help with? That I wouldn’t be able to find it if I didn’t know what I knew that makes sense. Yeah, that’s that’s the tough part of it, you know, and there’s just so much and I’m, like, the identity of being a black person, you know, the whole identity when you try to tell someone that you know, I’m on the spectrum is like, Okay, who really cares? And who’s going to help you with that? It’s like you have so many other issues and pressing concerns. It’s almost like you’re making it up, like, why are you wanting to bring more problems to yourself? And it’s like, oh, well, I hear what you’re saying, I really wish this was a choice. You know, because I can play the I can play the role I can I’m a great masker I can make you I can talk and on and I’ve learned how to engage in ways that people would never even assume it a little bit. Even the people that do know me for years still don’t believe me. And the ones that now believe me, they still have a hard time adjusting to me. It’s almost like I’m looking for a special attention or I don’t want to be held responsible for for certain behaviors I have and and that’s within the people that’s known me for years. So it’s just a it’s just a whole nother level of knowing who you are. And trying to get that across to other people, especially in the black community because there’s so many other things we’re dealing with who wants to hear it?
HM: Up next, let’s hear from ESPERANZA PADILLA (EP) what she would have told her younger self before becoming an advocate.
HM: What would you have told younger you?
EP: Oh my goodness. Seems so obvious and funny, everyone told her she’s autistic for one thing, because she didn’t know. But other than that, I would have told her to get connected with people online. You know, start networking with people on Twitter or, there’s, there’s dozens of Facebook groups, start talking to people who are, are artistic or who are doing work, learning about them. And you know, from learning about them, not only will you learn more about yourself, but you’ll learn more about what you can do you learn about advocacy, you learn about, you know, the different tactics you can take to make social change. I think, you know, that’s an important bit of wisdom is just learning how to network, because that way, finding others and finding community, that’s what’s gonna make a difference not only in your life, but like, hopefully, in the lives of many other people in the future, too.
HM: And let’s finish up with LAUREN MELISSA ELLZEY’S (LME) advice for those becoming self advocates.
LME: I would say start with your own experiences. I don’t think I’m the only person who says this. I’ve seen other self advocates say that as well. But you know, since autistic individuals, we’re very unique, we also share a neuro type that we are, we have our unique personalities. And no two autistic people are the same. It’s really important to speak from first person. And even if we want to speak in generalities, making it clear, when we speak in generalities that we’re not saying everyone, every autistic person experiences XYZ. And so speaking, our own story, I mean, that’s self advocacy. So I would say, share your voices, it’s so powerful to share our unique voice and her experiences. And at the same time, go into research, go look at what’s happening in the field of research. And that can be through books, through articles, in different elements like that. And take time to draw that comparison and of self to the research and see what feels authentic, and see how we can talk about what this research looks like in real life. Research can get really uppity and not sound human at all. But autism is in a field of research. It’s a world full of people, we are human, we are people. And so using your unique voice, to make research real, is so powerful. So that’s something I would say. And then lastly, to anyone who is wanting to just to begin to share about their autistic experiences on social media. I say take breaks from it, and never feel like you need permission to take breaks. I think sometimes when we’re running a self advocacy platform, or we’ve been doing we’ve been doing something like that for so long, I can feel like we have to keep going and going and going. And if we take a break, we have to tell everyone I’m sorry. We don’t need to apologize for taking breaks. And we actually don’t even need to tell anyone we’re taking a break. Just log off and log on to self regulating.
HM: Be sure to check out DifferentBrains.org and check out their Twitter and Instagram at DiffBrains. And don’t forget to look for them on Facebook. If you’re looking for me in the meantime, I can be found at HaleyMoss.com or on all major social media. I can’t wait to keep connecting with all of you. Dr. Butts can be found at CFIexperts.com. Let’s keep the conversation going. And we’re really excited for who is next to join us here on the Spectrumly stage. We will be back soon. And in the meantime, I’m wishing you nothing but the best and hope that you are having a wonderful day. Thank you for your continued support.
