As you likely already know, at Living Well we take advocacy very seriously. And we are forever grateful to all who take time to advocate for themselves and others. Advocacy is something we talk about a lot, because the conversations matter when introducing others to what it means to be a disability advocate.
While advocating to legislators for funding is a critical piece of what we do, as is advocating for disability rights and inclusion in general, at the core, advocacy starts with individual needs and desires. We support the people we serve by helping them advocate for their needs, whether it be verbally or via expressions, or with the help of communication devices. You have read about our self-advocacy group, STARS, and celebrated our Gala Dreammaker Self-advocate winners over the years. Today we want to introduce you to Alecia who lives at our Paul’s Place home. She loves Diet Coke, enjoys her alone time, likes to be outside in the fresh air, and has been her own guardian since 2019. While not typical for everyone living with a disability, being her own guardian means a lot to her, and she feels empowered by the ability to make her own decisions.
To understand advocacy better, let’s learn what advocacy means to her. Here is what Alecia has to say:
What does being a self-advocate mean to you: Speaking up for what you want, and what you need. Today I advocated because I want to eventually move out on my own, so I was talking to my social worker and discussed programs. It is going to take a while with short staffing, but it might be possible. It’s not that I don’t like it here, but more independence would be nice.
How do you feel about being your own guardian: I had to go to court, which was a little nerve-wracking but also exciting. I had been wanting to be my guardian since my foster mom passed away and the timing felt right. A former Living Well employee came with me, and I advocated in front of a judge and asked to be my own guardian. He asked me what I would be able to do for myself finance wise and self-care. I told him I can speak up for myself. And it was approved. I can now make my own medical decisions. But I lean on staff for guidance, they help me though the process. I have help but make the final decisions with their input. Overall, I feel more independent, I feel more free knowing I get to make decisions for myself. This is not for everyone with a disability but is right for me.
What do you think about day at the capitol: We are always fighting for more services, wages, exposure. And I think fighting for more services is important. Especially after Covid, it took a lot, and still there are shortages of staffing, and I think they are trying to fix that. They need to know what they need to do to fix it. So, we go and talk with them about our needs.
What do you consider day to day advocacy: I love being here with everyone, but like my me time sometimes. I like to explore, and going to get a Diet Coke or a Subway is an opportunity to get out for a bit. I pop in, say hi to people and then head home. I don’t advocate much about meals, because I don’t much care what we eat, as long as it is good. Although I don’t much like spice. But some people advocate for themselves that way, asking for specific foods.
Overall, Alecia likes the opportunity to roll on her own individual path. She believes in rules but thinks they can be different for everybody. And just like all of us, doesn’t like being controlled. Which is why she loves to advocate for herself and others. When she wants something, she speaks up. And when someone she knows wants something, she tries to help them, too.
Kelsey Schoeberl, Program Manager, supports Alecia and all the people who call Paul’s Place home. She believes that it is important to fully listen to the people she works with so she can really understand where they are coming from. Kelsey says, “Not pushing your own agenda or coming in thinking you know exactly what they need just isn’t helpful.” Adding that when you listen to the point of view and what they want out of life, you can easily find out what is important to them. She says of Alecia being her own guardian, “I think it is great that she has control over her life. It is meaningful in that she can make meaningful decisions for herself.”
Special thanks to Alecia for taking the time to chat with us, and to everyone who supports Living Well. We are grateful for all of our self-advocates and the staff who help them to live their best lives.
Ok, we talked about gratitude for self-advocacy. Now let’s quickly hear what Alecia and Kelsey are grateful for.
Kelsey— I am grateful for the great staff here, there are a lot of people here that are always looking to help. When something needs to be done, I know there are people here that will be eager to pitch in. They always want to help, and I am so grateful for them.
Alecia—I am grateful that I have a place, a roof over my head. And I am grateful that I can go to day program, the same one I have been there for the past 20 years.
What are you grateful for today …
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