8 minute read
SELF ADVOCATES: MEET KELLY LYONS
BY KELLY LYONS
What is a self-advocate? What does being a self-advocate mean to you? A self-advocate is a person who can tell their story and ask for what they need. They can stand up for themselves and others. You need to know your rights. You can help change things that are wrong. I go to Congress every year to talk about my needs and those of other people with disabilities like Down syndrome.
I am a self-advocate when I ask for help at school or work, when I talk to my doctors, and even when I order at a restaurant. When people talk to my mom or someone else about me instead of to me, I tell them to talk to me, please. I can speak for myself. I teach them that people like me are pretty much the same as everyone else.
How has becoming a self-advocate helped you? I know my rights. I have learned to talk to many people in many situations and I enjoy meeting people. I really like getting interviewed on TV-it’s fun to see myself there. I am not afraid to ask for help. I love to travel and being a self-advocate has helped me do that. I like when people talk to me directly and not to a parent or other family member. I can get on a plane. I can find my way in hotels. I even know how to order gluten-free foods, since I have Celiac disease. It is important to me to do things for myself, and it helps other people understand that I am a person too! I am just like you!
Tell us more about your journey. What lead to you becoming a self-advocate, what do you enjoy about being a self-advocate? I was born with Down syndrome and a blocked intestine. I had surgery the day I was born. I had open heart surgery when I was 16 months old. I had a lot of surgeries and illnesses when I was younger including leukemia, many leg surgeries, stomach surgery, ear surgeries, and typical stuff like tonsils. The leukemia took years to beat, and my legs were all twisted up. In high school, I had three major surgeries to fix them. I spent all my time in a wheelchair and was stuck at home or in the hospital a lot. It was during that time that I started getting really good at doing make-up. I used to practice and practice. I even had an appointment schedule, where friends and family “booked” a time and came over for me to do their make-up. That is when I knew I wanted to become a professional make-up artist.
I started being a self-advocate early. My mom insisted that I was fully included at school from kindergarten through my high school graduation. I always wanted to be treated the same as the other kids. If I wasn’t, I would say something! I always attended my IEP meetings and started the meeting by telling them what I want. I also brought an “ALL About Me” letter with me.
When I was going to my many doctors’ appointments, my mom always insisted the doctors talked directly to me and I got asked questions. I got really good at answering. My mom ran a Down syndrome organization, and I often got to go to TV interviews. I got really good at telling my story and shaking hands!
I started going to Washington, DC, with my mom when I was 4. She brought me to help get a law passed so that expectant parents who got a prenatal diagnosis of Down syndrome were given factual information about the diagnosis. When she found out about me, her doctors tried to get her to terminate [the pregnancy]. Then they offered to help her give me up, saying she did not have to take me home. I am glad she didn’t listen to them. We helped get that law passed, so now parents get better information.
After that we started working on getting the ABLE (Achieving A Better Life Experience) Law passed. It allows people with disabilities to save money for their futures. I even got my whole 5th-grade class working on a video that I took to my congressmen to tell them to support this law. It also passed, but I was in junior high before it did. Then I helped get the ABLE law passed in my state. I have my own ABLE account now!
I still visit my representatives in Congress, both in DC and in Indiana. We talk about the civil rights of people with disabilities. I really want everyone with a disability to get a good inclusive education like I did. It has made a huge difference in my life.
I was able to speak at the National Advocacy Day this year to help young self-advocates just starting out. I talked about being prepared, telling your story and relaxing when meeting your congressmen. I really liked helping others get ready for a day on the Hill.
What would you like to tell others about becoming a self-advocate?
How can someone do this? I think that being a self-advocate makes you more independent. I started early by learning to do things for myself, like ordering in restaurants, talking to doctors and speaking at my IEP meetings at school.
When I started doing grassroots advocacy, I went to trainings in person and online with the National Down Syndrome Society. I have also done training with the Arc of Wisconsin, and the National Down Syndrome Advocacy Coalition. It is great to contact your local or national organization for your disability to ask how you can become an advocate. I have made many friends by doing this and have gotten to travel.
What do you enjoy doing for fun? I LOVE doing make-up and watching make-up tutorials. I like to shop for make-up, but it does get expensive! I also really like to sing karaoke! That is my thing. I love to listen to music and make playlists. I love an audience when I sing.
I recently moved and want to get back into a local Down syndrome group so I can make new friends. I love to go to the theater with friends. I like to ride the Buddy Bike with my dad and cook with my mom. We have a pool and I like to swim with my dog. He is so funny!
I also love to draw. I am always making cards for people who are sick and for friends and family on the holidays. My mom has my drawings made into bags and shirts for gifts. I like to write special prayers on my cards. I spend a lot of time praying for people I love. I really like spending time with my boyfriend, too.
Dreams for the future? I have lots of dreams. I want to go to make-up school and be certified, so I can have a fulltime job. I just got a scholarship, so I am starting school soon!
I want to get married, buy a house, and have kids. I want to travel to more places. So far, I have been to France, Switzerland, and many places in the US including, Sedona, New York City, Hawaii, Washington, DC, and of course, Florida. I want to see Egypt someday. That sounds like a neat place.
I want to keep going to Congress to speak up for others. There are so many needs. I want people with disabilities to get the same rights as other people.
Pets? Family? I love animals! I have a dog named Luke and a cat named Star. I love them so much that I started a business doing dog walking and pet sitting. I walk dogs named Ozzie, Cherrie, Petunia, Winston, Arthur, Monty, Sadie, and others. I have a couple of kitties I visit too. I like to play with them, but I don’t really like cleaning kitty litter. When I am busy, my mom will fill in and walk the dogs, too.
I live with my mom, Robbin, my dad, Dana, and my brother, Reed. My sister, Regan, lives in Wisconsin. I like to visit my sister and we Facetime almost every day. I also live near my grandmother and aunt and help them. I love my family, but I want to live in my own place sometime soon.
