PART OF OUR RESOURCE 2024 SERIES: Expanding your options and your community
Featuring guest blogger, parent, and advocate Jawanda Mast.
I have been involved in policy advocacy since we received our prenatal diagnosis that our unborn daughter, Rachel, had Down syndrome almost 25 years ago. Soon after our diagnosis, I started learning about issues related to school inclusion, waitlists for services that were an alphabet soup of acronyms that I knew nothing about, and I learned that if she had over $2,000 in assets, she would be ineligible for some services she might need to live independently. It was all a bit overwhelming, but one of the reasons we chose to have a prenatal diagnosis was because we wanted to be prepared. I made a conscious decision to learn everything I could to help my unborn daughter become a productive and contributing member of society.
Through the years, Rachel and I have done a lot of advocacy and speaking. A few years back a workshop attendee asked, “Rachel, how did you get involved in policy advocacy?” She said, “My pink house." I chimed in to say, the pink house made her kind of famous, but that is not where she started.
Often, our children follow in our footsteps. Sometimes, they go in a completely different direction. Take Rachel's involvement in theatre, dance, and musicals. My husband and I have both done a few high school plays and church skits, but both of us are way more interested in sports. I laugh and say that God has a sense of humor giving me a girlie girl. I would much rather watch college football than go to a dance recital. However, it was clear from the time Rachel was little that she is a performer. She loves the stage. I have learned how to manage make-up, hair, and costumes, while both of us shed only a few tears along the way. My point is that whether Rachel had Down syndrome or not, we would have her interests.
Rachel’s big start came when she was just two years old. We were living in Tennessee, and I had been writing to my congressman about an early intervention issue. I learned he was having a Town Hall meeting, so I took her to the meeting. I figured they would call on me if I had a toddler in tow because they would be afraid of the disruption that might be on the horizon. I was right. They called on me. We went on to have a great relationship with him.
Rachel was three when she went on her first trip to the Tennessee Capitol in Nashville. It was a family affair for us. We joined others from across the state for Disability Day. By the way, if your state has a Disability Day at the Capitol, it is the perfect way to start your advocacy journey! Our journey was about a three-hour drive, and we left home at 7 AM. By about 1:00 PM, Rachel needed a break. Her daddy said he would sit in the hall on the main floor with her while I went with others to finish visits.
About an hour later, I came back to see a crowd of people around the bench where they were sitting. Rachel was in the middle of the group entertaining them. Jonathan said we should have just sat there all day because everyone stopped to visit, including several key legislators, we had missed earlier that day. They talked with Rachel and were given her one-pager.
Rachel was in kindergarten for her next visit to the State Capitol. She proudly carried the stack of letters we brought to give to elected officials. We walked into one office and she pushed ahead of me, stuck her hand out to shake hands, and said, "I am Rachel and I am fully included in my classroom." I have never been more stunned. We had not talked with Rachel about that. I was always careful not to discuss school issues in front of her.
Clearly, she had been paying attention to my words. That moment was better than anything I could have said or done. That is when I knew I was in trouble. She was and is a masterful negotiator.
As a family, we believe that it is important to do our part and to use our voices and abilities to impact change. We decided early to invest time and resources into making policy advocacy a priority. We are keenly aware that not everyone can do that and that it is a privilege, an honor, and a great responsibility. I believe that it is important for Rachel to be able to advocate for herself. I often say it is important for her to find her own voice. Because policy advocacy was important to our family, it was somewhat natural for Rachel to follow in these steps. Some of Rachel's personality traits make her a natural advocate. She has this infectious smile and bright eyes. She is friendly, outgoing, and not shy about speaking up. She makes people feel welcome, and she is persistent. She is high energy, and trust me, that is an enviable trait for anyone doing advocacy.
We moved to Kansas when Rachel was nine and I had been working for three years on the legislation that would eventually become the ABLE Act. When she was 12, I decided it was time to take her to The Hill. She joined me when I went to an advocacy day on The Hill in Washington DC. By this point, we were pushing the ABLE Act hard. One of the tools we always use when visiting legislators is a one-pager. Some people call it a bio or simply a letter. It is simple. You combine a little information about yourself along with information about an issue, why this issue is important to you and an "ask". The ask is especially important. In Rachel's case, her one-pager was a letter with a paragraph or two about her. We added information about the ABLE Act and why it was important to her and others with disabilities. It included a request that the legislator signed on as a bill co-sponsor.
We worked together on the one-pager. She chose the pictures she wanted to use, and she gave me input on what should be said. Then, we practiced at home. We discussed why the ABLE Act was important in a way she could understand. We talked about her dream of growing up and becoming an actress, getting married, living in her own house, and how the ABLE Act would help. Then, she proudly carried her one-pagers and gave them to the Members as she shook hands.
On her first trip to The Hill, she met our first-term Congressman and his staff. They immediately became buddies. We visited several other offices, but the highlight of the day happened in our Senator, Jerry Moran's office. We were standing to leave when Rachel said, "Senator Moran, you need to pass the ABLE Act so I can live in a pink house!" Everyone started laughing and she flashed that winning smile and a very serious look. That is where Rachel's Pink House was born. Soon, it became a symbol of her march to independence.
While policy work has been a family affair, that trip was Rachel’s giant leap into policy work. She has grown into an amazing advocate in her own right. A few years ago, Senator Moran told a group that Rachel was “the best lobbyist in Washington.” It made her so happy that she still talks about it in her presentations. I learned an important lesson in that State Representative's Office when she was five: Rachel pays attention. She hears what is said. She may struggle to explain it, but she gets it in her heart. Her heart and her persistence are the winning combination.
We will never lack disability-related issues to address with our lawmakers. ABLE legislation, including ABLE improvement acts, has been just one of those issues for us. One or both of us has advocated for issues like stronger school seclusion and restraint regulations, supported decision-making, Save Medicaid, eliminating the Medicaid Waiver waitlist, Individuals with Disabilities Education Act, updated laws related to Social Security asset limits, subminimum wage and competitive integrated employment, organ transplant nondiscrimination, and safe and affordable transportation. Rachel’s most powerful testimony was just two years ago. She gave personal testimony related to the modernization of the intellectual and developmental disabilities Home and Community Based Services (HCBS) waiver. One advocate said, “I have never seen legislators as visually moved by testimony as I was when they heard Rachel’s story.”
Through the years, Rachel has been a trooper. She has gone with me to give testimony, attended lunches, and has gone to advocacy days when she would have preferred to go to school. She has missed a few events to advocate or sometimes just to be present. Rachel understands that it is important not just to her but to others. She has been a good soldier.
Rachel has found her voice, and like each one of us, she has a story. The characteristics and personality traits that make her a good advocate are not because she has Down syndrome, but Down syndrome is an important part of her story. Likewise, many people have found their voices, who are not outgoing, and they are not comfortable talking to people. They all have an important story that needs to be told and heard. This is just our story of Rachel’s journey into grassroots advocacy.
As the Grassroots Advocacy Manager for the National Down Syndrome Congress, I have the privilege of helping people across our country learn to use their voices to tell their stories and impact policy change. I have a few suggestions to help you find and use your voice to advocate for important policies:
Educate yourself by attending workshops, webinars, conventions, and signing up for disability-related publications, articles, and educational materials.
Sign up for NDSC Action Alerts. These alerts let you know when you need to call or send a letter to an elected official regarding specific legislation.
Join the National Down Syndrome Advocacy Coalition (NDAC). NDAC is a coalition of individuals with Down syndrome, family members, professionals, and other allies who come together to learn, to act, to advocate. There is power in knowledge and community effort.
Use your story!
Develop a one-pager that can simply be updated and asks can be updated, too. There are examples on the NDSC website.
About her advocacy Rachel says, “I am proud that I can be a voice for my friends with Down syndrome so they can live their dreams, too." Won’t you join Rachel and me and use your voice? Your story is unique to you. Use it.
BIO: Jawanda Barnett Mast
Twitter:@sassysutherngal
IG: thesassysoutherngal
Jawanda Mast is the NDSC Grassroots Advocacy Manager. She has been involved in disability policy advocacy since her daughter Rachel was born with Down syndrome almost 25 years ago. Jawanda has graduate and undergraduate degrees from the University of Arkansas and was honored with the 2017 Alumni Community Service Award for her body of advocacy work. She and her daughter Rachel spent eight years advocating for the passage of the federal ABLE Act and have spoken around the country on ABLE, Advocacy, and Inclusion. Her daughter Rachel opened the first Kansas ABLE Account. She has provided written and oral testimony on a variety of federal and state policy issues and has served on many state-appointed committees. Jawanda believes we all have a story and we can use those stories to impact change at all levels. She is passionate about the meaningful inclusion of individuals with Down syndrome and other intellectual disabilities in all aspects of the community and has presented at many conferences. Jawanda says her work is a #laborofloveandconviction.
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