Episode 12 Transcript
00:14 [Allycia Wolff] Welcome to Focus on the Future, a future planning podcast for caregivers and families supporting people with disabilities. Focus on the Future is a podcast of The Arc Minnesota, a nonprofit advocacy organization supporting people with intellectual and developmental disabilities. My name is Allycia Wolff. I’m an advocate here at The Arc Minnesota and your host for Focus on the Future. In this week’s episode, we are going to be talking about self-advocacy. Self-advocacy itself is a pretty simple concept. It means advocating for yourself and so think about how you advocate for yourself every day. How do you speak up for yourself? How do you, how do you use your voice to make your life look like how you want it to? Self-advocacy, the movement really started a few decades ago and moves into today, of course, and specifically is applied to people with disabilities. Because self-advocacy – being able to speak up for yourself and say what you want and have choice in your life and really be able to dictate what means a good life for you – hasn’t always been a part of the conversation for people with disabilities. The history of people with disabilities, as we all know, is that other people were making choices for people with disabilities. Saying where to go to school and where to go to work and how to dress and where to live and all of those things. Self-advocacy is changing that conversation and is encouraging people with disabilities to say what they want, to speak up on their own behalf, and to use their power and their voice because we all know what we want and we all know ourselves best. So self-advocacy is a movement, and it has a lot of power with people coming together and changing their lives for the better. So The Arc Minnesota has many self-advocacy groups across the state, and there is a lot of conversation happening about how self-advocates can work with each other to change not only their lives but also the lives of other people with disabilities. And, of course I’m not an expert in this area because I don’t have a disability label. And so I invited Barbara to come in today and share her experience as a self-advocate and what self-advocacy means to her and what her vision is for the future. And this all applies to future planning because the most important component to creating a good life in the future is that you have a say in what that good life means and what it looks like. So let’s just dive right into the conversation here with Barbara and learn a little bit from her.
03:10 [Allycia Wolff] Do you want to introduce yourself some?
03:12 [Barbara] My name is Barbara and I have developmental delays. I have mild cerebral palsy.
03:23 [Allycia Wolff] And what do you like to do for fun? Tell me about the kind of person you are.
03:27 [Barbara] I love to play with my dolls. I love to watch movies, listen to music. I love to scrapbook. And of course, I love doing my martial arts.
03:42 [Allycia Wolff] Yeah, can you can you tell the audience a little bit about your martial arts?
03:46 [Barbara] Of course. [laughs] I love taekwondo. That’s a certain kind of martial arts. There’s different kinds of martial arts out there. In martial arts, we have forms and there are certain movements and there’s sparring. And then there’s weapons. And we learn to defend ourselves and to control ourselves. Taekwondo is really about life and helping you. I started in martial arts six years ago, and I just tested in June for my first degree black belt.
04:29 [Allycia Wolff] Congratulations.
04:31 [Barbara] Thank you.
04:31 [Allycia Wolff] That’s a huge accomplishment. So can you tell me, from your perspective, what is self-advocacy?
04:38 [Barbara] Self-advocacy is having your own voice, sticking up and having the right to do what you want to help yourself. To say you want to do something you’ve always wanted to do. And to help you with your health or needs and to really to have your own voice to help yourself.
05:08 [Allycia Wolff] What have been a few ways that you have practiced self-advocacy? How does that look on a day to day basis in your life? Being a good self advocate.
05:21 [Barbara] I’ve learned from my mom by watching her at home with writing and organizing, being resourceful. I’ve been to other groups where I’ve learned to have the say in what I…in things that could help me like resources, like there’s a number of resources out there. Like Arc, Pacer Center, NAMI Minnesota. I’ve been to those events where I can help advocate for myself and for others.
06:02 [Allycia Wolff] Okay, so going to different events, getting resources, learning more information, is a good key to being a good self-advocate.
06:10 [Barbara] Exactly. And also-
06:12 [Allycia Wolff] And staying organized.
06:12 [Barbara] Exactly. And looking things up online.
06:15 [Allycia Wolff] What about for people with disabilities that don’t have the ability to read or write? Is there a way, ah, that you would encourage people to be good self-advocates still?
06:27 [Barbara] Yes, I would recommend just by getting out there and being seen. And even if there’s someone who can’t really read or anything just by making yourself seen and that you’re your own person can help.
06:51 [Allycia Wolff] And how long have you considered yourself a self-advocate?
06:55 [Barbara] I would consider myself a self-advocate since 2010 ever since I lived in a group home.
07:04 [Allycia Wolff] Okay. And that wasn’t a good experience for you?
07:08 [Barbara] It was not a good experience as I was emotionally, verbally, mentally, and physically abused. With my rights and how they kept wanting to do their own things or the staff neglected.
07:29 [Allycia Wolff] And that’s when you realized that self-advocacy was important and that you had a voice and that you didn’t have to live like that. You just had to speak up. Is that right?
07:38 [Barbara] Exactly.
07:39 [Allycia Wolff] Okay, so my next question was how have you become such a strong and effective self-advocate? Cause I was hit by that right away when I met you, is that it’s really hard sometimes to stand up for yourself and say what you want, especially when everybody else around you is telling you that you shouldn’t, you know. And that’s true, disability or not. A lot of people don’t have that sense of bravery. So how did how did that come about for you? How did you become so strong and brave?
08:10 [Barbara] It came about when I was very young, in elementary school. Learning things from both my dad and my mom, where they believe that I should have my own voice and to stick up as it can help me in life, where I can help others and help others and be a voice to them.
08:35 [Allycia Wolff] Okay, so, self-advocate for yourself and for others is a part of your passion.
08:40 [Barbara] Exactly.
08:40 [Allycia Wolff] Great.
08:41 [Barbara] One of my passions. Yes.
08:43 [Allycia Wolff] So this podcast is all about how to plan for the future. And so, if you were talking to parents and caregivers as they’re thinking about how to plan for the future and how to help their children become good self-advocates, what would you want to share with parents?
09:00 [Barbara] I would share, let your children be their own person and help them by protecting them, loving them unconditionally, and to teach them about these things. Um, where they can help others, like volunteer and school and help journal or write about things, and listen to current events where they can help be a voice and advocate for themselves and for others. Because if you can have your own voice, you can go far in life. Nothing can stop you.
09:48 [Allycia Wolff] Do you want to share any of those changes that have happened because of your self-advocacy?
09:52 [Barbara] I would love to thank you. Some of my experiences after the group home where I was abused, I moved in back with my mom. My mom and I have two dogs. We have been moving from apartment to apartment after apartment, where this is our fifth apartment within nine years and it is very tiresome. And I know I gotta keep up and advocating for myself where it’s extremely hard, but yet I have to keep on it where others can hear like today, Allycia, where I have the privilege of speaking.
10:44 [Allycia Wolff] Yeah, you have to just keep on telling people what the issues are so that there could be a solution down the road.
10:49 [Barbara] Exactly. Never give up and never say no. One of my favorite quotes. And it can be very scary as people don’t want to open their doors by taking housing vouchers when you live on low income. And housing, it’s a big issue where it could end up going backwards. Whether could be institution. So it’s important to speak up and advocate for these rights so we don’t end up having institutions.
11:26 [Allycia Wolff] Yeah, yeah, we want to move forward.
11:28 [Barbara] Move forward in the future. Let the future begin.
11:32 [Allycia Wolff] Yeah, I recently was looking online and found some resources about self-advocacy. On a website, I found five tips for being a good self advocate. Those are be self-aware, know yourself and who you are and what you want. Know your needs. Know what kind of support you need and, like, what help you need from people. Practice assertiveness. Be strong in your voice. Developing your self confidence, knowing that you’re worth it. And then utilizing support. So being able to accept the help that’s given to you. So those five so being self aware, knowing your needs, practicing assertiveness, developing self confidence, and utilizing support. What do you think about those, and do you have anything to add?
12:21 [Barbara] I think that when you looked these things up that you nailed it because it’s exactly what you need to advocate, and not only within your voice, but also in your mind and physical, where you can have that ability for self-confidence. And, uh, I just would like to thank people in my life who have helped me with my self-esteem, where I am confident.
12:56 [Allycia Wolff] What do you think has made you a confident person?
12:58 [Barbara] What has made me a confident person is by doing my martial arts. Where it has changed me, where I am able to conquer my fears, where it helps with those struggles in life, where I’m scared of the future, where I can be one person, it helps me be the person. I feel better, who I am within and out. And it helps to really do it, as my mom has noticed a big change. Ever since I have done martial arts where I have gotten… I’m better with balance. Yeah. Posture. Advocating for myself.
13:49 [Allycia Wolff] I’ve heard that, yeah, I’ve heard that so many times with martial arts that it’s not just the activity of martial arts that is really beneficial to people. But it’s all the other things that you learn with it.
14:02 [Barbara] Exactly.
14:03 [Allycia Wolff] Like, a few years ago, I took up yoga, and I’ve been doing a lot more yoga, and I found even just having a time to be still in my mind and be concentrated on something has helped me become a better person also.
14:19 [Barbara] Exactly.
14:19 [Allycia Wolff] Yeah, we all need to find those little things that bring us to life. And it seems like yours is martial arts.
14:26 [Barbara] Exactly.
14:27 [Allycia Wolff] Or, one of yours is martial arts. That’s your passion.
14:30 [Barbara] Exactly.
14:31 [Allycia Wolff] When you think about your time that you have been a strong self-advocate, have you experienced any pushback from people where it’s been hard to be a self-advocate, or people have told you that you shouldn’t be? Have you ever experienced that?
14:45 [Barbara] Many times from the system within DHS where my social worker and the company, who I am with for a case management, have told me that I am the boy who cried wolf when I never heard that story. As I tried to advocate for myself and trying to let them know what I need help with and so I can succeed in life for a better future where they have threatened by not listening to me anymore if I continue to advocate in what I was doing, where they didn’t want to listen to that. So, yes, there have been many times within the DHS system where I have been put down for advocating.
15:47 [Allycia Wolff] Frustrating.
15:47 [Barbara] Yes, as it’s controlling and dictating.
15:53 [Allycia Wolff] I wonder why they have told you to not be as a strong of a self-advocate.
16:00 [Barbara] Honestly, I believe it’s because people feed off of others and how they are with if they need help, where they want to take that power of to themselves and not have that person be helped. Where they have the power, where they dictate, say you have to do things our way.
16:26 [Allycia Wolff] Yeah, so it’s a power control thing.
16:29 [Barbara] Exactly.
16:30 [Allycia Wolff] Yeah, yeah, And saying No, it’s just it’s easier for me if I do all of the things. This is what should happen.
16:37 [Barbara] Exactly.
16:38 [Allycia Wolff] Yeah, and but it’s your life. And that’s really frustrating. And what I’ve seen is that a lot of people with disabilities get really discouraged after so much time of people not listening, and not feeling heard by the system as you, as you call it, that it can get really discouraging. What would you say to people that are feeling discouraged?
17:03 [Barbara] I would say to write things down, to journal, to listen to positive music, to do the things that help you in life, that help you succeed. As they can come a long way to help you through your struggles and when you are down feeling hopeless.
17:30 [Allycia Wolff] One of the most powerful things of when I first met you is you seem to journal a lot and and write all of that stuff down and it seems like it helps you organize your thoughts.
17:41 [Barbara] Exactly, and that’s what it does.
17:43 [Allycia Wolff] When you see the future, if you could create the perfect world for people with disabilities and people without disabilities and everybody who lives on this earth. What do you think the perfect world would look like?
17:59 [Barbara] A perfect world would be where everyone is at peace. Where there is serenity. Where things are calming, laid back. Where there’s no disturbances, no controlling, judgments, bullying, dictating.
18:26 [Allycia Wolff] Where everybody just treat each other equally.
18:28 [Barbara] Where it’s sunny and or light blue sky perfect with clouds. Where it’s happy outside.
18:39 [Allycia Wolff] Yeah, and you recently mentioned to me that you wanted to create a movement for people with intellectual and developmental disabilities similar to what Martin Luther King Jr did with the civil rights movement.
18:54 [Barbara] Exactly.
18:54 [Allycia Wolff] Yeah, what does what does that movement look like? What do you want to do?
18:58 [Barbara] My movement looks like where people go out and advocate and walk day and night, to be noticed, to get the word out. We need to do a march and walk.
19:17 [Allycia Wolff] What would this march be standing for?
19:19 [Barbara] The walk in march would be standing for all people with disabilities, as there are many people who need help. Many people with disabilities who may be on low income, who maybe have other health concerns, housing problems, not enough support helpers, not being able to find work easily. And not having group homes as much, where there is abuse, that happens.
19:59 [Allycia Wolff] So the march that you’re envisioning would be to say that that people with disabilities deserve better.
20:06 [Barbara] Exactly. That we deserve better with having disabilities. As everyone is important, everyone should be treated equal.
20:17 [Allycia Wolff] Heck, yeah!
20:18 [Barbara] Yes to that!
20:20 [Allycia Wolff] Heck yeah to that. [laughs] Yeah, everybody should be treated equally. And we all have different strengths that we bring into the world. Yeah. And my vision is that there wouldn’t really be any disability services. There wouldn’t really be special education. Everybody would just get the help that they need it because they needed help.
20:39 [Barbara] Exactly. And no one is above anyone else in the world. We are all the same. We all have feelings. You should all be heard.
20:49 [Allycia Wolff] So that’s your vision. And that’s would you say that that’s what you continue to advocate for and why you want to be a good self advocate? Because you have that vision for the future.
20:59 [Barbara] Yes. My vision is to just really get the word out where I believe these things could really help and need to go public with this. Where others know, and how we are treated and how we live and how there can be a difference if we can pass this on from one person to the next, where it can go down in generation to generation.
21:38 [Allycia Wolff] Yeah, we are the change makers.
21:41 [Barbara] We are the future. Look for the future, seek help, and advocate. And also write and look things up, cause that can really help. And let others know that you’re serious. Make it known that you’re serious with advocating and that you may need things to help you, but still, you can help yourself. Because even though we all have things we need, we are still capable of doing things ourself. The word “dis-” needs to be put away, where there is only the word “able”. As we can do anything we set our mind to. We can do anything.
22:41 [Allycia Wolff] Is there anything else that you want to share with parents or caregivers or people with a disability label about what self-advocacy is and what it can do?
22:51 [Barbara] Self-advocacy can really help those who are having struggles who are able to have the voice to stick up, whatever that outcome may be. Parents, caregivers, family members, even others like myself, if you’re having a hard time. Don’t be discouraged as we all go through these things and we’re here to help, especially to caregivers, families, and friends who wanna help, don’t discourage your loved ones with the disability, as it can be very frustrating for them. Let them be their own person. Help stick up for them when they need someone to lean on as it will help them in life. As my mom has been my biggest hero in life, my one who I always go to, my solid rock. As families want to think old school and have me go into a group home where my family but people have that right too change and to move forward in the future. That is what we need to do to be connected to any of each other. And that’s how we can help everyone with advocacy also. And I would like to thank my mom, my dad, my martial arts instructors, and friends and I would like to think Allycia for having me.
24:48 [Allycia Wolff] Thank you, Barbara. If this episode has you curious about self-advocacy resources in your area or just the movement in general, please reach out to The Arc Minnesota. Give us a call. Our number is 833.450.1494. There are also many other really wonderful organizations led by people with disabilities, with the whole mantra of nothing about us without us and saying that as people with disabilities, if there’s going to be a change that affects us, we should be at the table having that conversation. And that is essentially what all of this comes down to is making sure that people with any stake in the game, have the ability to say what they want, whether it’s their life, general overall services at large or, of course, their future. The Arc is a great resource, as well as Advocating Change Together, ACT, that is a national resource. It’s a national group as well as many, many other places. Go to our website to take a look, and again, thanks for joining us today.
25:59 [Allycia Wolff] The next episode of Focus on the Future is going to focus on person centred planning. What person centered planning is? Why do person-centered planning, and how does it fit into this conversation about future planning? It’s kind of a hot topic right now and something that a lot of people are paying attention to. So join us for the next episode as we chat about it. Focus on the Future is a podcast of The Arc Minnesota. Subscribe to the podcast on your favorite streaming service to stay up to date with the newest episodes. If you’re enjoying listening, please support us and the podcast by donating at arcminnesota.org/podcast. We would also love to hear from you in the form of a review or if you just wanted to call us and let us know what you want to hear about in the future. Our podcast music is composed and recorded by Micah Kadwell. Micah is a talented guitarist from New Brighton, Minnesota, and he also has autism. Thank you, Micah. Focus on the Future is a podcast produced and hosted by myself, Allycia Wolff and supported by a group of sound engineers. Thank you everyone for the work and thank you for listening. Have a great day and we’ll see you next time.