Category: Member Spotlight
What's your story? Tell us a little bit about yourself.
Desi is 32 years old and lives in her own apartment. She has a helper come in twice per week to help with meal prep and household chores. She is very determined and outgoing lady. She spends her time volunteering at various places. She volunteers at a animal shelter twice per week, a place where foster families can get clothes once per week, and the Donna Lexa Art Center twice per week. “I enjoy splatter painting at the Art Center the most,” she says. She’s also involved with some of the activities at LOV Inc and serves on the Wisconsin Board for People with Developmental Disabilities.
What does Self-Determination mean to you? Why is it important?
To Desi, self-determination means, “independence and living on my own with support.” It’s important to her because it makes her happier.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Desi is creating a presentation that will help law enforcement better understand how to interact with people with disabilities. She hopes that by educating them about certain behaviors or reactions people may have, it will cut down the number of people with disabilities getting hurt or traumatized.
What tip or resource would you like to share with people who want to be more self-determined?
Desi encourages people that if you fall, to dust yourself off, and get right back up. “You’ve got it,” she exclaims!
What are some of your hobbies?
In her spare time, Desi loves doing arts and crafts. She enjoys making bracelets for law enforcement and fire departments. She also enjoys biking around her neighborhood and hopes to get into backpacking someday.
***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.
Kate is a twenty-four-seven Green Bay Packer fan for life! She shares that in 1990, a virus caused her brain to swell, loss of memory, balance, sense of direction, etc… “It made my so-called normal life of almost forty years a real mess,” she tells us! Though it’s been a lot of hard work, her doctor fortunately sent her to Curative Connections Brain Injury and Wellness Day Program in Green Bay, WI when she was out of rehabilitation. She uses a wheelchair, so she says she rolls! She’s thankful to have a sound mind and able to make a difference. She lives outside of Denmark, which is about only fifteen minutes east side of Green Bay. She’s very fortunate to be able to live at home with one of her sisters and they help each other!
What does Self-Determination mean to you? Why is it important?
To Kate, self-determination means using information and friends to allow one to become more independent. She explains that online and on Facebook you can meet many individuals and hear their stories. It’s important to have a good support system. A few years ago, she was invited to join Partners in Policy Making! Transportation is an issue for many, but with covid it was online, so she didn’t need to travel. It was an awesome learning experience for her! She was interested in what was going on with politics and politicians that affect people with disabilities, but had no clue she could make a difference!
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Kate shares that attending the Self-Determination Conferences in WI Dells has also opened her ability to meet more people and have awesome adventures! Her very favorite is finding out about My Team Triumph! “Before covid hit, they were at the conference, and I was able to ride one of the three wheeled chairs – I was hooked immediately,” she explains! Since then, she has been the captain of several teams of angels running in the Bellin Run and Packer 5k in Green Bay, WI. “It is so amazing being right next to the runners who are trying to improve their personal times, being high-fived and encouraged to continue! When you depend on a wheelchair and mostly feel short, these runners make you feel your full height,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Kate explains that it’s easy to think “someone else will take care of everything.” She’s so happy she became involved in caring about what is going on in Wisconsin politics. It has really changed her life! Voting has always been important to her, but now she understands how important it is to do your research on the candidates and if they are aware of people with disabilities. https://www.VOTE411.org, gives you the information to make wise choices, and compare candidates that are going to make a difference or not make a difference in your district. She says, “there are other sources as well, get involved, you don’t have run for office, but you will find whatever interests you and want to make a difference – you can…”
What are some of your hobbies?
Kate explains that she that found after she was less able to do physical things all the time, she had an amazing gift for writing rhyming poetry! She continues to bring a great deal of happiness to many. She also enjoys making greeting cards on her computer. She likes going on Facebook to keep up with some of my nieces and nephews who live in different states. “I have only a hundred friends and these people all are important to me, I don’t just friend anyone,” she tells us.
She also enjoys going outside with her power wheelchair, planting flowers, and feeding the cats that live in our machine shed! Volunteering is near and dear to her heart! She volunteers at Curative Connections and, for about thirty years with friends and family members, she has enjoyed ringing Bells for the Salvation Army. “I enjoy every day and love to have fun 😉 I feel it is very important to give back and be thankful… Live well,” she exclaims!
***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,
Jennie is originally from Milwaukee, WI, but she lives in Ozaukee County. She’s 25 years old and works at Panera Bread. She usually helps with prepare food and get it to customers. She tells us that she enjoys working there because the staff is friendly.
How are you involved with self-determination? Why did you join the SD Network?
Jennie has participated in several self-advocacy meetings and conferences over the years. She’s been involved in things like the Youth Summit and the Independence First events where learned a lot about self-advocacy. Currently, she’s learning more about supported decision-making and guardianship. “It's a long process, but I'm slowly learning about those things,” she says. She likes supported decision making because nobody can take advantage of her. “They can’t take my freedom away,” she tells us. She involved with self-determination because my mom and her supporters are teaching her about it. She also joined the virtual conferences, and it was worth the experience. She explains that she didn't enjoy them because it was totally new for her, but, after awhile, she finally got used to them. She joined SD because she wanted to learn more about making her own decisions and avoid having a guardian.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in term of self-determination?
The most exciting thing for Jennie is that she has been able to join in-person conferences during the springtime and practice her speaking skills.
She’s also excited that she was able to participate in a couple of videos on the Self-Determination YouTube Channel.
What tip or resource would you like to share with people who want to be more self-determined?
Jennie encourages self-advocates is to be themselves, be satisfied, and be proud of who them are. “Don't ever feel disappointed or ashamed of your abilities,” she says.
Another thing Jennie encourages people to do is to take your time and ask for help whenever need it.
What are some of your hobbies?
Jennie enjoys doing things like singing, dancing, reading, writing, coloring, and watching TV/movies. Her favorite TV shows are Dancing with the Stars, American Idol, and the Ellen Degeneres Show.
***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.
Hannah is 25 years old and lives in Elm Grove. She shares that she has Down Syndrome. “I am living my best life to the fullest,” she exclaims. She moved into her own apartment in January. She loves having her own space and doing the things she wants to do. She explains that her dad was from Iran in the Middle East and that she is Muslim. Unfortunately, her dad passed away in 2013, but she is managing her life the way she knows that he would have wanted her to. She has a mom and a sister whose name is Nahal. They have a dog named Millie. She explains that she loves her family because they are really close and have a lot of fun together. “We like to have fun and be silly sometimes,” she says.
Hannah works a Pick N Save in the floral and bakery departments. She works three days per week and loves it. She also enjoys volunteering. She has volunteered at the Milwaukee County Zoo where she fed the giraffes, and she has volunteered at the Humane Society as well. “I love volunteering,” she says. She is really active in her community and loves social outings.
How are you involved with self-determination? Why did you join the SD Network?
Hannah is very involved in the Down Syndrome Association in West Allis. She attends classes they offer virtually. One of her favorite classes was the Globe class where they learned about different countries. She tells us that they also went to theaters and helped with things like will call tickets and handed out programmed. She volunteers at the Association as well. “It’s my favorite place. Everyone is awesome,” she exclaims!
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in term of self-determination?
Hannah shared a couple of exciting things with us. First, she wanted to tell us that she has a great group of friends that she loves spending time with. She’s been friends with her best friend since they were babies. They went to the same schools have a lot of fun together. One of the best memories she has is when she was prom queen her junior year of high school!
Another exciting thing happening for Hannah is that she is working with a tutor to learn a little bit of the Farsi language and the Iranian culture. By doing this, she is hoping to be able to communicate with her Persian family a little bit.
What tip or resource would you like to share with people who want to be more self-determined?
Hannah suggests sharing your hopes and dreams with your family and friends so they can help you try to achieve them. She tells us that she has a lot of great family and friends who take time to learn about her dreams and help come up with ideas how to make them happen. She also does a vision board to help her sort them out. "Don't be nervous to share," she says. She's also in a family group that's made up of her friends who have disabilities and their families that talks about their goals and how to achieve them. She likes to plan, but she says that if you struggle with planning, find a good support person to help you. She encourages everyone not to get discouraged. " If I can do these things, so can you," she enthusiastically exclaims!
What are some of your hobbies?
Hannah has a plethora of hobbies she enjoys doing. She likes to do all sorts of different crafts such as beading bracelets, looming baby hats with yarn and donating them, and diamond dotting (sticking diamond dots on pictures to make them sparkly) gifts for family and friends. She also likes to write - - especially poetry and affirmations. She writes newsletters for her family and friends. She also writes posts on social media sites like Facebook and Instagram. It helps her stay connected she explains. She also loves getting pictures with family and friends. “My family and friends are super important,” she says. Singing is another hobby she enjoys doing. She has taken voice lessons and loves to sing for fun. Cooking is yet another thing she likes to do—grilled cheese is her favorite food. She surely stays busy!
***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 Rachel! Between working for the state and being involved in different advocacy activities, this busy lady doesn’t have much free time. She enjoys being able to share stories and learn from others. She encourages everyone to speak up for themselves. We’re so fortune to have her as a member of the Network!
What's your story? Tell us a little bit about yourself.
Rachel was born in Miami Beach Florida and then moved to Los Angeles CA in 1998. She did all of my schooling in Los Angeles CA and then moved to Madison WI in 2014. Her favorite thing about living in Wisconsin is being able to go to her boyfriend’s parents’ cabin in the Northwoods.
How are you involved with self-determination? Why did you join the SD Network?
Rachel is one of the hosts on the Self-Determination YouTube channel. Her favorite thing about being a host is being able “share stories and learn from others,” she tells us. She’s also involved in a program called Bridge Builder through LOV Inc. which helps her set goals to be independent in life. She joined the SD network to make friends and socialize with people.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in term of self-determination?
Rachel enjoys going to work and being independent in the community. She works for the Wisconsin Department of Revenue as a revenue tax assistant. She explains that she likes her job because it varies day to day and she learns lots of new things.
What tip or resource would you like to share with people who want to be more self-determined?
The tip that Rachel would give is to speak up and let your voice be heard. “The reason it’s important for people to speak up for themselves is to let their voices be heard for what they believe in and what is important to them,” she shares.
What are some of your hobbies?
When Rachel isn’t working, she enjoys doing things like playing on her computer, swimming, and hanging out with friends and family including her 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.
What's your story? Tell us a little bit about yourself.
Cheryl lived on a farm until she was in fourth grade when they moved to Cambridge WI. She graduated from high school there and went on to begin her journey of volunteering, supporting, caring for, admiring, and becoming friends with people with disabilities. “I’m grateful for these experiences for when I was introduced to disability myself, those experiences helped me make it through it all,” she shares. In 2008, she graduated from the UW-Madison with a Bachelor’s of Science degree in Rehabilitation. She has enjoyed working with DVR, BPDD, Independent Living Council, AchieveAbilities, and the Employability Project. She also served on the Board of Directors for Access to Independence and Movin’ Out for many years. “I retired last year and I’m enjoying every moment of every day,” she says.
How are you involved with self-determination? Why did you join the SD Network?
“Through what I call seeing into the inside of disability, I saw how self-determination is the key to creating a life just as one wants it to be,“ Cheryl says. She explains that having met the amazing individuals she has, and to have been a part of their amazing journeys, is the most exciting thing she has had the honor to witness.
Having been introduced to disability herself in 1997, she had to speak up to gain what she needed to become what she now and to what she has yet to accomplish. When she saw how the SD Network encourages, guides, supports, and celebrates self-determination, she had to join.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Recent very exciting news for Cheryl is that she wrote and recently published an Amazon best-seller “Silencing the Noise of Disability”. The book covers her experiences after being introduced to disability and how she healed.
“It took a lot of work and a lot of support to accomplish this, but practicing self-determination made my dream come true,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
“When it comes to how we want to live our lives, we are the ones who know exactly what we need to do it. We know what works, and what doesn’t, we are the experts of our lives. So, don’t give up looking for and getting what you need to be all you can be. It’s your life and you have every right to find the perfect fit,” Cheryl tells us.
She thinks that one of our greatest resources are those we know. She explains that those who have been with us and for us can support, guide, and fight alongside of you.
What are some of your hobbies?
Cheryl is an avid photographer and rarely does her camera leave her side. Anything outdoors in any season, is my greatest joy.
She loves road trips with friends, or just by myself, as they always lead to amazing experiences.
When it comes to hobbies, I like to say, life is one of mine. I get to form it, build it, play with it, share it, and experience it with pride, joy, and a whole lot of happiness,” she says!
***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 Kai. This resilient person has recently learned that, through self-determination, they can create their own support system with the people and resources they feel comfortable with. They're confident that, with the right supports, one day they will be able to live independently without any support. We’re so fortune to have them as a member of the Network.
What's your story? Tell us a little bit about yourself.
Kai shares with us that they are a high functioning adult with numerous diagnoses. They tell us that they have had a lot of experience in advocating for themself and the communities that they are a part of.
How are you involved with self-determination? Why did you join the SD Network?
Kai became involved in self-determination for multiple reasons. They explain that a good chunk of their life was spent being treated as either a helpless child or an incompetent, lazy individual by people who believed that they knew what was best for them. These experiences have taught that the only one capable of knowing what is best for a person with a disability is the person themself. “I didn’t even know that self-determination was a thing until this past year, which speaks volumes to the importance of advocating and spreading this crucial information to others in the disability community,” they say.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Kai is excited that they learning to advocate for themself. They explain that they are taking necessary steps to build a system that will enable them to one day live independently, without any outside support. “It’ll take time but, with the right resources and supports, I’m confident that it will one day be a reality. My reality,” they exclaim!
What tip or resource would you like to share with people who want to be more self-determined?
Kai shares that the Aging and Disability Resource Center of Dane County is a great place for those who live with a disability to get services, support and referrals to other resources in the community.
What are some of your hobbies?
Kai has many hobbies. They love to read and write stories, watch television or film, play games, consume food or drink she has never tried before, listen to or play music, spend time with animals, hang out with other people, cook food, make baked goods, mix cocktails, exercise, spend time outside, volunteer in the community, go to shows or events and much more! “I’m always open to new things, which means that I’ve developed a lot of hobbies and interests in my twenty-some years of life,” they tell us.
***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 Martha. This incredible Mom doesn’t let anything stop her. Not only does she advocate for her daughter, she advocates for all families in her district. In addition to being a parent advocate, she also is a ballroom dancer para-athlete. She recently started a non-profit organization to support other para-athlete dancers. She believes self-determination is something we all can appreciate in some way. We’re so fortune to have her as a member of the Network!
What's your story? Tell us a little bit about yourself.
Martha grew up in Watertown, WI and has five younger brothers and an older sister. She was always active in sports like track, basketball, gymnastics and softball during grade school. During high school, she was in cheerleading and softball. She worked in the cafeteria at Luther Preparatory School, later switched to a stocker/Asst Manager at Pick n Save, and also held a server job a Perkins for a short time. She shares with us that she sustained a C6/C7 spinal cord injury (SCI) the year after graduating high school from a car accident in snowy conditions.
“Having a positive attitude amidst a traumatic injury certainly helped, and I certainly had some down days, but all the shining stars at Froedtert got me through it all,” she says.
After all the therapy and finding a new normal, she played wheelchair rugby, went to college, and worked at Walmart in Electronics. She’s twice divorced and has a nine-year-old amazing daughter who energizes the both of us every day. She shares that her daughter has Cerebral Palsy and epilepsy, but even with all their supports, they team up and don't let things get them down. Her daughter has special education programming to support her academic career, and Martha educated herself on the Spec Ed system to support her and other families.
Currently, Martha is a parent peer advocate with Madtown Mommas & Disability Advocates, a Ms. Wheelchair WI Coordinator, and she also am a ballroom dancing para-athlete. She just started a non-profit, Wheels & Heels Inc., to open ballroom dancing up to more participants since cost is definitely a barrier for this particular sport. She performed a showcase this year and will be in competitions in May and July.
How are you involved with self-determination? Why did you join the SD Network?
Martha believes self-determination is something that we all can either appreciate individually, or collectively. “It's all about setting appropriate goals and taking advantage of unique opportunities, she says.
She enjoys and believes networking amongst others is not only essential for my own perspective and experience, but it's equally important to share ourselves with those around us. “Disability in community is what inclusion is all about,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Martha has two things to share. First, she’s excited to be able to work directly with the Madison School District Special Ed Department—it is empowering and impactful. “As much as I advocate for my daughter, I'll go to bat for any family who needs with- with Madtown Mommas right aside me,” she says.
The second that she is wheelchair ballroom dancing. “It's a sport that I can enjoy with my own time commitment for lessons, and draws out creativity. Having been introduced to adaptive dance in a group setting back in 2019, I've been dedicated to learning technique and different styles,” she explains. She'll be in my first competition this year on May 19th for the Milwaukee Classic, where she’ll be judged for Cha-Cha (she'll be the first wheelchair dance competitor in Wi fur cha-cha) and the routine she performed for Dance Fantasy. She loves how her instructors believe in her and continue to challenge her in a variety of ways. Her daughter enjoys being her personal cheerleader whenever she comes along, and she’s incredibly blessed to have a friend who comes along with them to watch her so she can focus on whatever dance activity they are doing. “Life is more fun with friends,” she exclaims!
She shares that since encircling herself in the world of dance, she has created a non-profit called, Wheels & Heels Inc., to help financially support other para-athlete dancers for personal instruction, public showcase or competition opportunities and group lessons. It is still being set up, but will have the capacity to grow and really make dancing in WI more inclusive than its ever been before.
What tip or resource would you like to share with people who want to be more self-determined?
To be more self-determined, Martha suggests people make sure your goals are personalized to your individual needs, and try to make them realistic. “In other words, don't make goals upon other people's expectations unless you feel that the goal truly accommodates your individuality. Being realistic is being honest with yourself. Some things are just facts, others are aspiring challenges- having a lens to perceive the difference can come with trying and time, but never forget that accommodations are always an option.
Martha tells us that resources are found everywhere. “Personally, I've learned a lot from BPDD, WPEN, UCP, DPI, FACETS, and many more. When I had questions, I dove online and made a ton of phone calls, then put in a lot of time to educate myself with the experiences I was navigating and sharing/ listening to those around me,” she says. She stresses that communication is key and you never know where you might find a new connection.
What are some of your hobbies?
Martha’s new hobby has become Wheelchair Ballroom Dancing. She explains that the interpretation and experience an audience member goes through while watching a performance is intriguing. Dancing incorporates musicality, physical movement, and emotion. She never had expected that, but as a lover of the Arts, it's a vulnerable art form that reminds us of the beauty around us.
She also enjoys any adventure she and her embark on, baking, and enjoying the summer months in Wisconsin.
***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 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.