Category: Member Spotlight
Meet Emily. When this determined self-advocate isn’t working with the Living Well Grant, she’s probably busy doing one of her several hobbies. As a host of the Self-Determination YouTube Channel, she loves being able to share different things with people to maybe help them be more determined. We’re so fortune to have her as a member of the Network!
What's your story? Tell us a little bit about yourself
Emily is 37 years old and is originally from a small fishing town called McClellanville in South Carolina. It was 45 miles from Charleston. In 2002, her junior year of high school, she moved with her parents to Madison. She attended LaFollette High School. Emily shares that she has a Nonverbal Learning Disability (NLD). “I actually best express myself and understand best verbally,” she says.
Since 2018, Emily has been a Self-Advocate for the Living Well Grant, and she is also a host of the Self-Determination YouTube Channel.
How are you involved with self-determination? Why did you join the SD Network?
Emily joined the Network to share her story and to connect with people. She’s looking forward to having her Member Spotlight posted on Facebook.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Emily is excited that the Self-Determination YouTube Channel is growing! She explains that more hosts are being added and more videos are being made. “I enjoy being able to share my opinions on different topics and in videos that are shared publicly,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Emily encourages people to check out the Self-Determination Channel on YouTube and watch some of the videos. “Subscribe to the channel. It’s free,” she exclaims!
What are some of your hobbies?
Emily has lots of hobbies. She likes to do crafty things like sequence kits, puzzles, and coloring pages. She also likes to find new recipes and try them.. And, of course, she loves watching YouTube videos. In addition to watching videos on the Self-Determination Channel, she also likes watching music videos and videos of animals.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Katie is 28 and lives in a small town in North Western Wisconsin. “I’m not even sure it’s on a map,” she jokes. She has two cats. She shares with us that she considers herself disabled for six years. She has a generic disorder which her mom and two sisters also have to different degrees.
How are you involved with self-determination? Why did you join the SD Network?
After completing the Partners in Policymaking class through the Wisconsin Board for People with Developmental Disabilities, she attended the Self-Determination Conference where she learned about the Self-Determination YouTube channel. She just officially became a member of the North Country Independent Living board.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Katie is working on becoming a peer specialist. She is also talking with her legislators and about marriage equality. She shares that she has been engaged for three years, but, due to how it will affect her benefits, they’ve been putting it off. She explains that she fought to get on disability for two years, and doesn’t want to give up medical care. Her finance is very understanding and has been by her side while she continues to fight this battle. They’re going to advocate not only for themselves, but also for others who are in similar situations.
What tip or resource would you like to share with people who want to be more self-determined?
Katie encourages people to get really familiar with the library and the Aging and Disability Resource Center (ADRC). She tells us that both places have tons of fun information to help direct you to what you’re looking for. “Don’t be afraid to ask for help when you need. It’s the hardest thing to ask for, but so important,” she says.
What are some of your hobbies?
In her spare time, Katie enjoys doing things such as bullet journaling, crafting, quilting, LARPing (sewing costumes), gardening, and teaching classes in the community.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Meet Krystal. This writer has overcome a challenging childhood and has learned writing helps her express her feelings. She’s learning that by helping people solve problems she’s making a difference in her own way. She also shares some great organizational tips with us. We’re so fortune to have her as a member of the Network!
What's your story? Tell us a little bit about yourself.
Krystal shares with us that she had a difficult upbringing, but she has cut toxic people out of her life in order to change who she once was and become the best version she could be.
She explains that writing has helped me through all my experiences. She has some brain damage around the areas of my brain for expression, in addition to trauma. When she is unable to express my words verbally, she is able to pick up a pen and write what she means. “When I'm unable to communicate, my anxiety increases, and I develop a panic attack. I've learned early on that if I brought a notebook and pen with me wherever I went, my anxiety decreased. I learned early on how important every word was and became sensitive to the pain others felt,” she says.
How are you involved with self-determination? Why did you join the SD Network?
Krystal tells us that she’s new to the SD network, so she hasn’t been much involved yet. She hopes to become an active member once she learns more about advocacy and how things are run.
She shares with us that her psychologist actually encouraged her to look at ways to share her knowledge and experiences. “I've been helping people on Facebook, Instagram, Quora, and other places with some problems they were forced to endure. How I saw it was making the difference in my own way. My psychologist helped me see this could reach more people and help people connect with resources they need, that my experiences were just as valuable as anyone else's," ’she explains to us.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Krystal is excited about a couple of things. She’s glad there has been more awareness for childhood intellectual and developmental disabilities. She didn't even know she had a developmental disability until she began intense therapy when she was 24. “This helped me understand why I felt a disconnection when I spoke versus when I wrote. While I can't have gotten my diagnosis sooner, I hope we all can continue to advocate to improve the future for the younger generations,” she explains.
She also is excited about being able to connect with senators and give input on upcoming bills. She intends on talking to her senator about the upcoming bills about mailing votes and medical assistance programs.
She also wanted to mention that she’s happy that NAMI (an organization that supports mental health)is now in Manitowoc. This will help the community heal.
What tip or resource would you like to share with people who want to be more self-determined?
Krystal shares lots of tips on how to keep organized:
- Make a chores list for every room in the household (weekly). Laminate it and you can reuse it to keep track of what needs to be cleaned each week.
- Get into a routine. Set alarms and stick to them, even though you don't want to. This helps create structure and an understanding of how your body functions.
- Make a checklist of what you need to get done each day. Don't overdo it. Be mindful of how much stress you can handle and make room for in case of emergencies, sick days, etc. She shares that she was taught goals need to be realistic, something you can manage to do, starting right now. Build yourself up slowly from there. If you become too stressed, go back down and build yourself up until you're ready to handle it.
- Color-code information or things associated with each other. This helps reinforce your memory. She finds it easier to remember the color of a folder where I put my bills versus what file number they're in.
- Label everything and make sure it's easy to read. This way you know where something goes and takes stress off your mind.
- Exercise 3-4 times weekly. She highly recommends yoga—it teaches you about learning patience, calming the mind, and how to be present at the moment.
- Eat whole wheat, fresh fruits, and lots of green veggies. Drink plenty of water. Having a healthy body keeps you energized so you can endure more and heal faster.
- Make time for yourself every day. Set up a certain amount of time doing something to learn about yourself.
What are some of your hobbies?
Krystal enjoys learning about any topic and will research topics she’s unfamiliar with. She enjoys reading a good story and doesn’t have a preference in the genre. Her biggest passion is writing.
She also enjoys doing activities such as listening to music (lately getting into operas, orchestras, and piano), learning how to paint and draw from a variety of artists online (they offer free classes at Michaels, which got her started), and volunteering at Painting Pathways a few times a month. She tells us that one of their upcoming projects will be painting inspiring quotes on stones to place around Manitowoc County.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Jen is 45 years old and has Mosaic Down Syndrome. She’s a lifetime ambassador for a nonprofit down syndrome organization called Nothing Down which is based in New Jersey. She explains that Nothing Down works to change the how the world views Down Syndrome. She explains that they work tirelessly along with their filmmaker to change the conversation about intellectual disabilities. There’s been a huge transition from the negative stigmas that were so common not too long ago. They have produced 14 viral projects. They have been featured on media outlets such as MSN, The Today Show and many more. At the beginning of 2018 they formed an International Ambassador Program and now has over 60 ambassadors across the globe. The ambassadors have become the face of Nothing Down, representing the organization in eight different countries and in 22 US states. Jen loves being an ambassador because, “Having my voice heard on the issues that are important. Helping people feel more enabled to take control and providing practical support to overcome health and social care issues for our loved one with Down syndrome is what I love to do.”
How are you involved with self-determination? Why did you join the SD Network?
Jen got involved in self-determination to advocate for herself and others to get the support they need to live successful lives.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jen is currently taking the Partners in Policymaking class through the Wisconsin Board for People with Developmental Disabilities. She hopes to change the way people view Down Syndrome. She’s not sure what exact policies she’d like to see changed, but things like supporting children in school, stop bullying, and making sure all kids are included and accepted are extremely important to her. “I know as I was included and accepted, but others aren’t,” she tells us.
What tip or resource would you like to share with people who want to be more self-determined?
Jen encourages people to set goals and advocate to achieve those goals that act as barriers. People should also participate in discussions that impact their quality of life and make choices based on personal preferences and interests. “Most importantly, keep high expectations of yourself,” she says.
What are some of your hobbies?
In her spare time, Jen enjoys watching TV (she loves WWE) and movies. She also likes to do things like listening to music, exercising, writing, baking / cooking, being mindful, writing, practicing self-care, and going on adventures.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Stefanie grew up in Colorado and Wisconsin with a brother with autism. She shares that growing up with him really shaped her worldview about disability and belonging. She attended UW-Madison studied child development and then got a Masters Degree in Social Work. As a student intern, she heard about the Self-Determination Conference and got to attend for free. As her college career wrapped up, she learned about an incredible opportunity through the Waisman Center, where she could work with families like hers to help create a better future for their loved ones. “That work with families led to the creation of LOV-Dane, which became LOV Inc. (Living Our Visions Inclusively) in 2020. I've been the Executive Director of LOV Inc. for the last four years and feel very lucky to get to do work that I'm so passionate about. I love talking to families from different parts of the state and hearing about their hopes and dreams for their loved ones with disabilities. It is such a privilege to be able to be part of their journey while they make the best possible life for their loved one. At LOV Inc. our focus is on helping people figure out what they want in life and claim the power to make it happen,” she says.
How are you involved with self-determination? Why did you join the SD Network?
While most of her work nowadays is with parents and siblings of people with disabilities, Stefanie explains that LOV Inc. has a major focus on self-determination for individuals with disabilities. Their staff team is part of the Living Well project and they spent the last few months reviewing the Rights Toolkit, which was a great starting point for many discussions. When they work with families or individuals with disabilities, they always make space for listening deeply to what is important to them in their life, and helping to navigate through any barriers they're experiencing. “I love being part of the SD Network to connect with other people doing similar work to us, and learning about new ideas people come up with,” she excitedly exclaims!
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Stefanie explains that in recent years, LOV Inc has focused on diversity and equity, in addition to inclusion. This year, they've been able to expand their work with Spanish speaking families by hiring a Family Resource Specialist who is Latina. Alejandra Espejo has been connecting with families and helping them dream big for their child's future, including their child living a self-determined life. They've done a lot of education on supported decision making and rights, though these terms have different meanings to Spanish-speaking families. “Bringing the idea of self-determination to a new culture is challenging, but definitely worthwhile,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Stefanie thinks it is easier to be self-determined when you know what you want. She encourages people to set goals for your future, talk with close friends and family about what you want your life to look like, and then ask for the support you need to get there. She says, “If the future feels too far away, think about the life you want to have six months or a year from now, and find a way to take small steps toward that life. Many people are rediscovering who they are after COVID, so you're likely to find a lot of other explorers on your journey.”
What are some of your hobbies?
When she’s not busy working, Stefanie likes to do calm and soothing activities. She attends yoga classes at a studio near her house, work on jigsaw puzzles with family and connect with my friends. She’s looking forward to life after COVID when it will be easier to travel safely. There's a lot of places in the world that she still would like to see. London is probably at the top of her travel list right now, but she would be happy to even be able to visit friends in Washington state next year.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little about yourself?
Olivia grew up in a tiny village called Brandon, but now lives in Fond Du Lac, Wisconsin. Currently, she works at Fleet Farm’s Fuel Center. She has a Bachelor’s of Arts in Psychology with a minor in Theology. Right now, she’s looking into grad school for family and marital counseling. She’s also the current director of the Wisconsin Youth Leadership Forum that is held every summer at Edgewood College in Madison, where they teach high school students with disabilities about leadership and self-advocacy skills.
How are you involved with self-determination?
Olivia is a great self-advocate. “Although sometimes I do rely on close friends and family for assistance, but hey, everyone needs a little help every now and then,” she tells us. She’s living independently in her own apartment and has a part-time job. She’s also working toward getting her driver's license.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Oliva is part of the Wisconsin Youth Leadership Forum (YLF) and she’s really excited that to have started a #WednesdayWisdom and other live chats on Facebook through the Wisconsin YLF page. This gave her the opportunity to talk to previous YLF staff and delegate members about their experience through the program and what they are up to these days. “It's been really hard to see each other and sometimes people just kind of get lost in life with what they are doing and don't really have time to meet up. It was nice to reconnect with them and hear about their memories of the program,” she says. About eight years ago, she informed the previous director that when the time was right that she would like to try being the new director. Olivia spent a lot of time talking with the previous director, and she spent two years being her assistant and learning everything that she could. She finally became director in 2016.
What tip or resource would you like to share with people who want to be more self-determined?
Olivia would like to share two resources: The YLF Facebook page and the Wisconsin Board for People with Developmental Disabilities website. Both provide lots of great information.
She encourages people to never give up. “Everything that you want will come to you if you work hard,” she says.
What are some of your hobbies?
In response to this question, Olivia says, “Oh, boy, this is a tough but fun question to answer.” She loves to read. She explains that it's a great escape from reality and to enter a world that can fill your head with so much imagination. Another good thing about reading is that you can learn about life, learn lessons and even read to learn something new. She enjoys watching TV and movies. A few of her favorites are “Heartland,” “Boy Meets World,” and definitely the Fall Hallmark movies! She also loves to run. She ran cross country and track all through middle, high school, and college—she enjoys the fact that it's your own pace and you can just run for fun! She enjoys connecting with friends--even though the last few years, it's mostly been through different apps or phone calls.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Tyler Wigington is 26 years old and has been living in a condo for three years now. He shares it with his brother who provides about five hours per week of support with shopping, cleaning and cooking. He has been working 30 hours per week for a number of years. He currently works at Woodman’s where he prepares online order for groceries. He participates in many activities such as Special Olympics, a bowling league, Best Buddies and events at UW Madison. He also has a chihuahua dog named Pacho.
How are you involved with self-determination?
Tyler has been involved with lobbying members of the WI Congress and Senate to help people with disabilities. He flew to Washington and met Tammy Baldwin and several other politicians. He even got to take a picture on the balcony of the Speaker’s Chamber. He has been trained as a Global Messenger and a Health Athlete leader. He also sits on the Unified Leadership Council for Special Olympics where they try to help others with disabilities learn to speak up for themselves and be their own advocate. He worked with the UW Waismen Center on a study to help include people with disabilities to be included in research studies as well.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Tyler shares that he continues to work on independent living skills and hopes move out on his own someday—or maybe live with a friend and he can help him be more independent. After five years of working with Woodman’s, he will be leaving. ”It is exciting and a bit scary to leave, but I am ready for a new challenge and hope to work in something related to sports,” he says.
What tip or resource would you like to share with people who want to be more self-determined?
Tyler encourages people should always have someone that cares for you helping you out. “My parents were training me to move out and now I am. I have a very good case manager that cares for me and allows me to choose how to live,” he explains.
What are some of your hobbies?
Tyler enjoys running. He has completed in seven half marathons and his fastest time is one hour and 37 minutes. He’s on USA Paralympics and has traveled to Ecuador, Portugal and Australia for races. He also likes to participate in Special Olympics for bowling, flag football and basketball.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Jordan is from Auburndale, Wisconsin and he just graduated from Auburndale High School. He will be attending Project Search in Marshfield this fall. He loves connecting with other advocates.
How are you involved with self-determination? Why did you join the SD Network?
Jordan joined the Self-Determination Network to meet others. “I want to meet other people that are like me and have the same needs and wants as me,” he tells us. Jordan is active in several different disability advocacy boards including Wisconsin Board for People with Developmental Disabilities, the Wisconsin Disability Vote Coalition, and the Wisconsin Supported Decision-Making Team. He has also attended many disability conferences, and is scheduled to present at a few upcoming events.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jordan is looking forward to speaking at the Self-Determination Conference this year. He does a lot of work with the Disability Vote Coalition to make sure that people have the right to vote and he's happy that the governor recently vetoed the bills that would have made it harder for people to vote.
What tip or resource would you like to share with people who want to be more self-determined?
Jordan explains that he got into doing more disability advocacy things about a year ago. He loves attending conferences and connecting with other self-advocates. He encourages others to get involved with various types of advocacy. He explains that one opportunity could lead to many others.
What are some of your hobbies?
Jordan is an avid sports fan and loves to watch Wisconsin sports. He also enjoys talking with family and friends over zoom about politics and current events. He likes discussing policy issues as well.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Meet Sydney. This animal–loving self-advocate keeps busy by participating in various advocacy organizations. She thinks it’s so important to have a voice and speak up for what’s right. She encourages others to get involved in some sort of advocacy. We’re so fortunate to have her as a member of the Self-Determination Network!
What's your story? Tell us a little bit about yourself.
Sydney is a disability self-advocate in Southern Wisconsin who lives on a farm out in the country. She serves on multiple disability advocacy boards including the Wisconsin Board for People with Developmental Disabilities, the Wisconsin Youth Leadership Forum Inc Board, and the National Council of Self-Advocates. She’s also a Crisis Counselor for Crisis TextLine.
How are you involved with self-determination?
Sydney involved with self-determination by participating in activities with different disability advocacy organizations and making her own choices in life. She tells us that the best part of being an advocate is having a voice and being able to speak up for what’s not right. She also enjoys doing policy work.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
The most exciting thing happening for Sydney is that she’s starting her own vlog on the Self-Determination YouTube Channel. She also recently became one of the hosts on the channel.
What tip or resource would you like to share with people who want to be more self-determined?
Sydney encourages people who want to be more self-determined to be aware of the different advocacy organizations. “If you aren’t already involved with them, to reach out to them,” she says.
What are some of your hobbies?
Sydney enjoys doing photography. She likes to photograph things like flowers and animals. She also loves taking care of her pets. She has 18 chickens, two cats, and a dog!
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Meet Kristi. This up-and-coming self-advocate has found her passion--disability advocacy. She has recently realized that her voice does matter and that she can make a difference in the world. She encourages others to “just go for it!” We’re so fortune to have her as a member of the Network!
What's your story? Tell us a little bit about yourself.
Kristi is 30 years old and was born with Spina Bifida. Due to this, she is paralyzed from the waist down. “Even though going through all of the medical issues associated with Spina Bifida hasn’t been easy, I feel like it has made me a stronger person and really what led to my calling to become a self-advocate,” she says. She has started joining different advocacy groups and is a Self-Advocate Leader with the Board for People with Developmental Disabilities (BPDD). She’s passionate about making this world more accepting and accessible to people with all different abilities.
How are you involved with self-determination? Why did you join the SD Network?
While Kristi is new to the Self-Determination Network, she has been in a few videos for the Self-Determination YouTube channel. She joined the SD Network because she saw a post on Facebook from a friend, asking if anyone would be interested in answering some questions for an upcoming Member Spotlight. She jumped at the chance because she wanted to get out there and share opinions on disability related topics. “Again, I feel like bringing awareness to different abilities and helping individuals overcome the obstacles that may arise is my purpose in life. Everyone has a story and I want to help people tell theirs from a position of power and strength rather than a position of pity and others feeling sorry for them,” she explains. She points out a quote from Dr. Seuss: “Why blend in when you were born to stand out?”
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
The best thing happening for Kristi is that she’s building up her self-determination skills. She explains that she’s gradually learning how to make her voice heard and that the value of what she has to say. She tells us, “before joining all of these self-advocate groups I was shy and reserved. I didn’t really give my feelings or opinions because I felt like no one was listening to me anyway so why should I bother?” In terms of self-determination, she’s learning that she does matter and she has the right and responsibility to get her thoughts and feelings recognized. “I’ve become more aware of the thought that if I don’t share my story, thoughts, and feelings, who will?” she says.
What tip or resource would you like to share with people who want to be more self-determined?
The advice that Kristi would give to others who are looking to become more self-determined is; even though it will be scary and you’ll have doubts, just go for it! She explains that if you don’t like how something in your life is running, let someone know who can help you make the changes you want. “Yes, you may not solve the issue or get the exact result you wanted, but you will make it known that you do have an opinion and need to be asked about different choices rather than having someone just make the choices for you. It’s your life, live it how you think is best for you,” she exclaims!
What are some of your hobbies?
Kristi likes going out with friends and scrolling through Facebook. She also enjoys attending a Pound fitness class on Tuesdays and Thursdays.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.