Category: Member Spotlight
What's your story? Tell us a little bit about yourself.
This 52-year-old mom, grandma and wife has faced some challenges in life, but she’s determined to make the best of life. Jen and her husband moved to Wisconsin from Illinois back in 2019. She shares that in March of 2015, she started having tremors in her hands, feet and face. The tremors quickly turned to whole-body seizures. She went to almost all the top hospitals in Illinois looking for an answer. She was told that she had Stiff Person's Syndrome, Essential Tremors and that she needed to be hypnotized because her "past life" was causing her seizures. It wasn't until she had over 30 seizures in one day and was hospitalized at Northwestern Hospital that she received a true diagnosis. She explains that her diagnosis is Functional Neurological Disorder (FND) and is a rare non-epileptic seizure disorder. She went to Mayo Clinic in Rochester for a second opinion and they confirmed my disorder. However, most doctors or neurologists didn't take this seriously. It was believed to be caused by trauma and wasn't very well known. Often times, she would be accused of faking her seizures or that she was just out to get some meds.
It wasn't until she moved to Wisconsin and became a patient at Monroe Clinic that she was finally taken seriously. She tells us that her primary doctor and neurologist were familiar with FND and best of all, they believed her! She decided that her goal was to become the best version of herself. She started seeing a counselor, went to PT, OMT, Massage Therapy and a chiropractor to help her physical self become stronger. She still knows seizures, but she’s now aware of what can set them off. She knows what to do when she feels them coming on. “Most of all, I don't hide from the public anymore,” she says.
She and her husband own a wheelchair company in Juda. They help people with disabilities all day, every day. She can’t work a regular schedule, but she tries to help out at the office as much as possible.
How are you involved with self-determination? Why did you join the SD Network?
Jen has just joined the Self-Determination Network, but she’s excited to see what it’s about.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Some exciting news for Jen is that FND is now more recognized and doctors are taking it seriously. “I have fought and fought for my own self and didn't take no for an answer,” she tells us.
What are some of your hobbies?
Before Jen was diagnosed with FND, her hobbies included playing and coaching volleyball. She coached grade school and club volleyball. It was her hope to one day be able to play with her sons. Unfortunately, physical stress or emotional stress can cause her to have a seizure. “However, it is still my goal to one day return to the sport I love,” she shares.
***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.
Melanie shares that she was born with her disability. As a kid, she says she had a decent life. She explains that during college is when it really started to hit her how many barriers adults with disabilities face to be able to be self-sufficient, contributing adults in society. She’s currently still working through trying to find resources to get employed enough to cover her healthcare needs and find affordable accessible housing.
How are you involved with self-determination? Why did you join the SD Network?
Melanie first heard the term self-determination during the pandemic after joining the Wisconsin Disability Connections Facebook group. She was looking for support and resources and was very interested in learning more about what all self-determination all entails. “I joined the Self-Determination Network to gain a greater sense of community and belonging with other people with disabilities,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Some exciting news for Melanie is that she’s working towards getting employed for the first time. She has an associate degree in accounting, and she explains that now that she knows how to advocate better, she’s working with the Department of Vocational Rehabilitation in hopes to find employment. She’s looking for something in the Administrative Assistant field she thinks.
What tip or resource would you like to share with people who want to be more self-determined?
Melanie encourages people not to give up! She tells us that she has gotten really down on herself as an adult when life milestones such as getting a drivers license, graduating college, and now getting a job, and moving out all seemed to come at a slower later pace in life than her peers without disabilities. “But I am determined to make those goals happen for myself,” she exclaims!
What are some of your hobbies?
Melanie loves being an aunt to my niece and nephew. In her free time, she enjoys Diamond Painting.
***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.
Brandon is a freelance content creator and a communications assistant from Watertown. He tells us that throughout his life, people keep assuming what he can and can't do. He always has/had to prove he can do it, but in his own way. “Having one leg and a speech impairment can be hard at times but I work around the challenges,” he says.
How are you involved with self-determination? Why did you join the SD Network?
Brandon wants to encourage others that they can do stuff, but in their own ways. “I want to show that, even though we are “different” and have “different abilities,” it doesn’t mean we can do stuff as “normal” people do; we just do things in our own “different” way,” he explains.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Some exciting news for Brandon is that he applied for first apartment. He has always lived with his parents. He shares that he needs to challenge himself even more by doing things on his own and living on his own. “Of course, I’m excited to move out, so I have more freedom to do my own stuff I’m my own way,” he enthusiastically replies when asked if he was looking forward to moving out.
What tip or resource would you like to share with people who want to be more self-determined?
Brandon encourages people to look at their challenges in life, and think it through how can they work around them--show people you can do it in your own way!
What are some of your hobbies?
For Brandon, his “hobbies” are also part of his jobs. He enjoys doing camera work and graphic design. He also occasionally enjoys playing wrestling video games.
***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.
Richard was born and raised in Connecticut, but now he currently lives in Madison, Wisconsin. He shares that he has mild autism and has done numerous amazing things independently. He has worked for the Wisconsin Department of Revenue for almost 32 years.
How are you involved with self-determination? Why did you join the SD Network?
Richard explains that he first got involved with Self-Determination when a friend, Nancy Alar, talked to him about what Self-Determination is. He has attended the annual Self-Determination Conference at Kalahari Resort for many years.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
An exciting thing for Richard is that he is a board member and self-advocate for the Arc-Dane County in Madison. He shares that he has excellent math and cooking skills, and he’s very outgoing and friendly. He is very committed to his job at the Wisconsin Department of Revenue.
What tip or resource would you like to share with people who want to be more self-determined?
Richard encourages people who have disabilities to advocate for the accommodations they need to be able to live and work in the community. " Also, I would treat every single person with disabilities with respect, inclusion, acceptance, and love,” he says.
What are some of your hobbies?
Richard has a variety of hobbies which include: cooking, traveling, riding his bicycle, bowling, mini golf, going to high school football games, and making new friends.
***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.
Kevin is the Director at Connections, an IRiS Consultant Agency. He’s the father of Tyler, a 26-year-old with intellectual disabilities. He shares that since Tyler was born, they have had expectations for him and expected those that interacted with Tyler to also have expectations. Tyler has his own shredding business. “We advocate with Tyler, not for Tyler,” he says.
How are you involved with self-determination? Why did you join the SD Network?
Kevin explains that when Tyler was born, they knew they needed to educate themselves to ensure he would have the best quality of life possible. He applied for and was accepted to the Wisconsin Board for People with Developmental Disabilities (BPDD) where he spent eight years on the Board including two years as Chair. “I learned a great deal that not only enhanced Tyler's life, but also those we got to know and share things via social media,” he says. He joined the SD Network to remain informed about what is going on and to be able to share some of the experiences that we found beneficial.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Kevin explains that Tyler has completed his first couple of shredding jobs and generated income. “When I see how excited he is while shredding, I know that it is giving purpose to his life,” he tells us. Working in the IRIS program, he explains that he sees great successes of people living independently and having community integrated employment with the necessary support.
What tip or resource would you like to share with people who want to be more self-determined?
Kevin reminds people that it is OK to try and fail. He explains that the best lessons he has learned in life are from his failures. Never be afraid to ask for help. “There are times I need to ask for help and it helps me make a more informed decision,” he says.
What are some of your hobbies?
With the pandemic slowly moving behind us, Kevin is looking forward to listening to live music again—it does not matter if it is a church festival, Summerfest stages or a major concert. If things work out, we plan to go to either Memphis or Nashville in August.
***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.
On March 16, 1997, Jenny was a victim in a tragic drunk driving accident, leaving her paralyzed from the chest down. At age 24, she was lost, living life wondering why she survived that horrific day and what was her purpose in life. “The independence, livelihood, career and dignity I once took for granted were all stripped away. I found myself living a life surrounded by physical limitations,” she explains. As she chose to be an individual who aspires to live life to the fullest, with the same freedoms as the rest of the world, she found it to be even more challenging. Since that time, she committed her life to raising awareness for individuals suffering from paralysis and neurological disorders.
In 2001, Jenny reigned as Miss Wheelchair Wisconsin which in turn jumpstarted her career as a Motivational Speaker. Over the years, she shares that she has been blessed with the opportunity to share my personal testimony and experience with a countless number of schools, colleges, universities, churches and correctional institutions. Highlighting topics such as the consequences of reckless driving, importance of medical research and overcoming adversity, just to name a few.
Jenny tells us that it had been her dream to organize and direct a fashion show and community awareness event completely comprised of models in wheelchairs to help raise money for medical research such as, spinal cord injuries and other neurological disorders. She decided to propose this idea to a few key friends that she knew could help her vision come alive on the runway such as, her now good friend, Bryon Riesch. Bryon was in a devastating accident that left him paralyzed from the chest down on April 25, 1998. His friends and family helped establish the Bryon Riesch Paralysis Foundation (BRPF) to assist others faced with a similar situation.
After his injury, Jenny explains that they were introduced in hopes that they’d become a good support system for one another. And they did! It was clear that their friendship was going to last a long time. Hence, “This is How We Roll" was created. A Fashion Show, Fundraiser and Community Awareness Event highlighting the importance of medical research, wheelchair accessibility and inclusion within the community by breaking down barriers and changing the stereotypes society has about wheelchair users. It also provides each model with a life changing experience by promoting positivity, self-worth and life skills. Models include a diverse group, ranging from teachers, nurses, lawyers, school children and even pageant titleholders. Check out 2023 Fashion Show highlights by going to https://vimeo.com/826538529.
Jenny goes onto explain that the Fashion Show is a perfect example of how communities and people working together can do great things. Since its fruition, they have introduced over 300 remarkable models (men, women, and children of all ages), representing the Midwest, to the runway. All wheelchair users. All “Rolling the Runway for Research". To date, they have raised over $217,000.00 for medical research and their fight against Paralysis!
For more information on how you can get involved with the Fashion Show contact Jenny at addisjenny@yahoo.com or 715-802-3456.
Learn more about the Bryon Riesch Paralysis Foundation go to www.brpf.org.
How are you involved with self-determination? Why did you join the SD Network?
Jenny has been enrolled in IRIS since 2008 (I Respect, I Self-Direct) which is a state program designed for disabled individuals like myself who are able to direct their own services and support. She explains that it allows her to make her own decisions, including determining her daily activities and the types of support or assistance she need to meet her long-term care needs under an established budget. Individuals choose where they want to live and who is caring for them. “I live in a remote area so hiring has always been challenging but now with the caregiver crisis and the lack of people working has hit my life hard. I keep plugging along though and don’t give up,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
For Jenny, it’s exciting to see firsthand individuals with disabilities living life. “I’m inspired every year to see these amazing models overcoming adversity whether they are a student, career driven, a parent, athletic or a state titleholder. They are looking beyond their disabilities and living fulfilled lives,” she tells us. It has confirmed why events like the fashion show and organizations like the BRPF are so important in Wisconsin.
What tip or resource would you like to share with people who want to be more self-determined?
Jenny encourages people to follow their dreams. She explains that if she hadn’t pursued her vision and her dream, the fashion show, that offers so much hope to so many deserving individuals, would not exist. “We need to keep our hope and faith first and foremost,” she says.
Two of her favorite Bible verses that she lives by are Matthew 11:28-29 and Luke 17:6
“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”
God has reminded me that I am here for a reason and a purpose. All I need is faith the size of the smallest seed on this earth – a mustard seed!
“He replied, “If you have faith as small as a mustard seed, you can say to this mulberry tree, ‘Be uprooted and planted in the sea,’ and it will obey you.”
What are some of your hobbies?
In Jenny’s free time, she enjoys spending it outdoors adaptive waterskiing, kayaking, hiking and spending time with family, friends and her puppy LuLu (service dog in training).
***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.
David is a 41 year old self-advocate. He shares that when he was 13 months old, he contracted a strep infection that his body couldn’t fight. He had a compromised immune system which mutated into full-blown arthritis. He doesn’t let the daily constant pain stop him from leading a successful life. He uses a power wheelchair and has found a treatment that works for him.
He lives in his own home and has lots of technology equipment in place to help him in case of an emergency. He also has an accessible van that he drives independently. This allows him to be an active member of the community. He had held several different jobs and has served on various disability advocacy boards.
In addition to his work in advocacy, David appraises antiques and used goods. he’s also a registered officiant and performs various types of religious ceremonies. He is working on writing a book about his life story as well. He lives in Richard County and is involved in mediating and relationships. “We all watch out for each other and help in any way we can” he says.
How are you involved with self-determination? Why did you join the SD Network?
Although his professional advocacy journey began in 2009, David began advocating for himself when he was a young child. He shares that when he was young, he allowed to come to his doctor appointments to learn about his condition. He also, when asked, points people in the right direction and shares how he overcomes his struggles in hopes to steer them in the right direction in their journey. “Sometimes it’s some of the most important jobs that involve no pay that are the most notable and rewarding in this world. Through my positions I do not seek fame and recognition, I only seek solutions and viable means of maintaining programs and funding for my state and local community,” he tells us.
Currently, David is the Chairman for the Richmond County Commission on Ageing and Disabilities Board, Chairperson of the Aging and Disability Resource Center of Eagle County Governance Board, and Vice President for the Movin Out Board of Directors. He’s also a member of the Inclusa/Family Care Grievance and Appeals committee.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determinations?
David is excited about all of the projects he’s working on. “Stay tuned,” he says.
What tip or resource would you like to share with people who want to be more self-determined?
David left us with the following quote and we didn’t want to paraphrase it because it’s so good.
For every good day that I have there are usually two not so good days to go along with it. The key to my success is surrounding myself with enough positivity to overcome the negative events that take place in my life. Always have goals and dreams no matter how far out of reach they seem. As we age things are bound to progress in the wrong directions making things harder. Tendons will stretch, muscles will atrophy, pain will be in plenty dished out as three square meals a day. Even still I shall trudge on at all cost. Adapt and overcome. No matter the odds never give up, for life is so short anyway and there are so many wonderful treasures this life has to offer.
What are some of your hobbies?
In his spare time, David enjoys watching sports, going deer hunting, watching the sunset over the Wisconsin River, and, most importantly, spending time with his three dogs. “They keep me company and are always there,” he 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.
What's your story? Tell us a little bit about yourself.
Emily turned 30 years old on St. Patrick's Day. She has a boyfriend named Mitchell, and they have been dating for eight years. “We like to sing karaoke, go to parties and dances, and bowl together,” she says. She lives in Fond du Lac, Wisconsin now, but she’s from Illinois. She sings in a choir and also does lots of activities with Champions of Fond du Lac which is a group for people with disabilities. She enjoys taking an online cooking class every week and she also bowls.
What does Self-Determination mean to you? Why is it important?
Emily explains that she likes to make her own decisions and vote. She wants to spend time with people she likes, and she wants to work to make money. “I want to do things for myself like shopping, deciding what I want to eat and where I want to live, and planning my activities,” she says. Her iPad is important to her, so she can do online classes, Facebook, and Facetime with her friends.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Emily tells us that at a recent People First meeting they talked about voting rights. She was happy to learn that she can get help filling out her ballot.
What tip or resource would you like to share with people who want to be more self-determined?
Emily encourages people not to be afraid to say what you want and to ask for help. Try new things and be safe online. She encourages people to join People First and go to state meetings like the Self-Determination Conference.
What are some of your hobbies?
Emily is looking forward to getting outside more when the weather is nice. She loves to bowl and play bocce. She also likes to do chores around the house like laundry, take out the trash, get the mail, keep her room clean. she likes to travel. She tells us that they are going to Arizona in a few weeks, and in July, they are taking a train across the country to San Francisco.
***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.
Stephenie is a self-advocate with Cerebral Palsy (CP). She lives in the Fox Valley Area with her husband, Ben and three cats.
For as long as she can remember, she has been advocating for things that she needed or wanted to do. She shares that it’s something her family encouraged her to do from a young age. Being one of four siblings, and the only child with a disability, she was “along for the ride.” “My parents and siblings included me in most of the daily goings-on. They have always believed that the list of things I can do is longer than the list of things I can’t,” she says. To this day, if there is something she unable to do, it usually comes down to either a moderate risk to her health/safety or lack of the suitable adaptations that make it possible for her to do it.
That said, Stephenie explains that her family’s belief in what she’s capable of and the dignity of risk gave her the freedom and confidence to seek out and embrace new experiences. From getting a college degree to moving out on her own, to international travel, dating, and getting married. She explains that she generally doesn’t let setbacks stop her. Instead, if there’s something she wants to do, she works at it until she finds a path or opportunity to do it. It hasn’t been easy. She shares that there are a lot of barriers and limitations to work around. “I get frustrated and discouraged sometimes, so I take breaks to work through that and recharge. Then, I try again. It takes time and perseverance, but 9 times out of 10 it’s worth it,” she says. As she has gotten older, she really wants to help other people with disabilities discover what they are capable of and pursue their goals and dreams. That desire led her to Disability Rights Advocacy and seeking change not just for herself but change within her community too.
What does Self-Determination mean to you? Why is it important?
For Stephenie, self-determination is having a voice and a choice in what happens in your life. She believes that for it to be successful, accommodations and adaptations may be needed, because the playing field isn’t level. But in the end, what you say goes and your choice is supported. It is important because it allows all of us to experience a life more fully lived. “We all have goals, dreams, and wish lists. Everyone’s wants something different out of life. Self-determination allows you to embrace life and make it your own,” she explains.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Some exciting news for Stephenie is that she and her husband will celebrate their 5th wedding anniversary this year. She shares that while the road to marriage wasn’t easy, and isn’t for most people with disabilities, she’s excited to celebrate this milestone. It has fueled her work to eliminate the marriage penalties and increase asset and wage limits. She explains that there’s a way to go yet before the penalties are eliminated, but there is legislation in the pipeline to increase the asset limits and make other reforms to SSI that are sorely needed. “I’m hopeful that we’ll see the bill passed and those changes start to happen. We all deserve to experience love without limits if we choose to,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Stephenie’s self-determination tip is to set goals. “With self-determination, ideally the floor is yours. The world is your oyster. The question is, now what? What is it that you want to do?,” she tells us. She explains that answering that question may feel overwhelming. Stepping back and setting goals can help break things down into manageable steps. It can also help you set a target to aim for. It usually doesn’t happen right away, but when you hit that first target, it not only gives you a sense of pride and accomplishment, but it also motivates you to set the next goal. As your goals build on each other, your confidence will grow. You may find yourself more solution-minded, open to new experiences, and excited to see what’s around the next corner. Goal setting has been really positive for her, she hopes it is for others too. Just remember, to set reasonable timelines for whatever you want to accomplish. And keep an eye on your energy and stress level. Take breaks for your mental, emotional, and physical health when you need to. The goal will still be there to work toward after you recharge.
What are some of your hobbies?
In her free time Stephenie enjoys writing, painting, and making jewelry. When she’s not doing that, you’ll probably find her cuddled up by the fire with a good book or taking a bath to relax. She also loves spending time with animals and traveling with her husband to see new/favorite places and have adventures together. She likes to cook and decorate; take opportunities to spend time with friends and family. In warmer weather, she’s either in the pool or in the garden.
***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.
Amy has a master's degree in special education and school social work. In the past, she was a 504 coordinator. Currently, she’s a special education teacher at an elementary school. “I have a passion for education and working with kids and making policy changes that make positive changes for all people,” she says.
She has a two-year-old service dog named Beans. She was Miss Wheelchair Wisconsin and Miss Wheelchair USA.
What does Self-Determination mean to you? Why is it important?
To Amy, self-determination means living life to the best of her ability. She explains that it's important because it's a weight that everyone has and she thinks we need to do a better job with attendant care, transition, jobs and education for people with disabilities. “The possibilities are limitless when given opportunity but, unfortunately, we are not given opportunities,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
The most exciting for Amy is that, even though it’s a struggle sometimes, every day she’s able to live in my own apartment and work a job as a special education teacher--while nagging over 13 specialists, needing attendant care, and not being able to drive.
What tip or resource would you like to share with people who want to be more self-determined?
Amy encourages everyone to never give up and don't let people speak for you. “It’s not who you think you are that holds you back, it's who you think you're not,” she explains.
What are some of your hobbies?
During her spare time, Amy enjoys hanging out with friends, being with her service dog Beans, volunteering, water skiing in the summer, and watching and playing wheelchair basketball. “I’m always an advocate,” 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.