At Living Well, we know the importance of disability advocacy, especially this year. We are shining a light on the importance of government funding to ensure the people we serve are cared for and safe for many years to come. We are diving into advocacy to show the world that the work our staff does is essential, and that caring for humans with kindness and compassion is a job worthy of respect and a proper wage. We are hoping that the more we talk about disability advocacy, the more other people will get comfortable with spreading the message that disability is diversity. We know that advocacy is essential to the goal of helping people with disabilities live rich and full lives in an inclusive world, and that it is imperative to get the word out.
Yet there is another form of advocacy that is perhaps at the top of the list. Self-advocacy. What is self-advocacy and why is it important?
Experts would say that self-advocacy is important in several ways, including helping people do better at school, work, and in life in general. Self-advocacy skills can help people who think differently feel empowered. It is known that people who know how to effectively self-advocate tend to be more confident and independent. What is true for all of us, when we communicate our wants, we get the knowledge we need to succeed with confidence and ease. And when we actively take part in making the decisions that are important to our lives, it simply feels better. For all of these reasons, Living Well believes it is essential to provide a safe place for the people we serve to advocate for themselves and feel supported in doing so. With that as the goal we started a program called STARS, where the people we serve are invited to gather and chat about their wants, needs, expectations and goals, all while in a supportive group of like-minded people and caring staff.
To understand why we have a group like STARS, it helps to know the origin story. About twenty years ago, Alex, who has been with Living Well almost 30 years now, attended a disability services conference in New York. She remembers being immediately impressed by a group of speakers. There were three people, all living with disabilities, sitting at a table talking about the frustrations they had. They were demanding privacy, access to meal preferences, and discussing openly the kinds of things that would make them happier. Alex remembers it was an eye-opening experience, because at the time person-centered planning was a hot topic. Seeing the people fully advocate for themselves in a large group was delightful. Back in the day organizations would typically care for one person the way they cared for all. That was clearly never the best approach, but until it took off there was no roadmap on how best to support a group, and simultaneously meet individual needs and desires. Alex said at the conference there was a lot of focus on individuals who are unable to speak, and it immediately helped her look at care from a new perspective.
Alex already knew from experience that it was overwhelming to recognize the needs of people who were nonverbal. But what stood out the most, is that the conference showcased the need to treat people as people, not as a group, and to encourage finding ways to communicate with all. It was a lightbulb moment and Alex says, “Coming out of that conference, I realized you have to be able to take family input and learn more nonverbal ways to communicate. You ask and then you try a little harder.” Alex says that she almost immediately began to understand that individuals who are nonverbal can be very clear with they want, without saying a word. And over time she has become an unwavering advocate for people with disabilities, and especially those who are nonverbal. As soon as Alex returned to Minnesota, STARS was formed.
First and foremost, since the very first STARS meeting 20 years ago, gatherings were meant to be a place where voices are being shared. This means open conversation in a safe space environment. During sessions they talk about rights and responsibilities, like voting. Following the deeper conversations, they enjoy activities and presentations. During DSP (Direct Service Professionals) week they will share what they like about the care providers who support them.
STARS are active participants at Disabilities Day at the Capitol. There have been discussions about weather awareness and environment, and one earth day someone from the arboretum came and did a wood craft with the group. Wellness is a big topic, and various therapies have been weaved into the program over time. Secondhand Hounds has been involved and happily bring in pups and talk about pet therapy. Music therapy and instruments have been introduced. And public Safety is well liked by the group, and police, fire and EMT professionals will share with the STARS what they do in their communities. There is no shortage of discussion topics, and we are grateful to the organizations and volunteers who help make the meetings even more meaningful.
Self-advocacy for the STARS group at Living Well is also about the importance of social connectedness, so there are also a lot of parties! This week there was a Valentine’s soiree and there were heart crafts, volunteers from the Vikings, pizza and treats, and puppies!
Brian Jenkins, Team Operations Associate of the Minnesota Vikings, has been to many of the past STARS events. When asked why he likes helping out he had this to say, “I always like to give back when I can. People gave to me when I was growing up and I wouldn’t be where I am today without them.” He is here to serve, and we are grateful for his effortless ability to include and support the people we serve in such a fun way.
Nancy has been a member of STARS since the beginning, and was at the party, too. When asked what she likes about STARS, her answer kind of says it all, “I love everything about it!” James, with Living Well since 2003, says, “ I like STARS because it brings together my friends and other people from different homes.” Adding, “It is important to me because I get to leave the house to do fun activities like bingo, and volunteer to give out prizes to winners. We do a picnic, valentine party and many fun things.” James says STARS is important, “Because I was able to talk to the big bosses at the State Capitol to pay staff good, so we have staff.”
Peggy, with Living Well for 20 years, was at the party as well. And expertly used self-advocacy a while back when putting her artwork up for consideration for use in the Gala theme and posters. With the support of staff her artwork will be featured this year. Each and every party and meeting is a patchwork of decisions and desires put forth by the STARS. We are fortunate that this program is strong all these years later because of dedicated staff who understand the importance of self-advocacy, and because of donors who help fund these activities and scholarships. The scholarships are for Self-Advocates Minnesota (SAM) conferences that take place every other year. In the past STARS members would fundraise at Family Fun Day by selling arts, crafts, t-shits, and the opportunity to throw water balloons at staff. Now we lean more into donations.
Beth Tollefson, Senior Director of Program Services, says, “I have really enjoyed being a part of the STARs group as people are discussing what is important to them, learning about topics that they want to learn about, and fostering friendships and social connections that they value.” Especially after COVID, and the lack of in person gatherings, Beth thinks the STARs meetings feel like a reunion and celebration of long-term friendships. She says, “It is fun to see people who really enjoy being together.”
Self-advocacy is an important part of what we do here at Living Well, and we are grateful to everyone who works so hard to make everyone feel seen and heard. And having fun at the same time make it even more meaningful. Thank you to all who support and create safe spaces for advocacy of all kinds.
Interested in helping to support STARS? Consider a donation to help cover expenses of custom t-shirts, adventures or conference scholarships. Reach out to Devan.Heinsen@livingwell.org