Bethesda empowers people receiving services as leaders and decision-makers by ensuring they have a voice in agency planning and decisions: “Nothing About Us Without Us” put into practice. Self-advocates have been collaborating with senior leadership at Bethesda since the formation of a Self-Advocates Advisory Committee in 2019. We were curious to learn firsthand about what it means as a self-advocate to be a member of this committee.
One leadership trait that stands out is a desire to serve others. Walking into Amber’s home at Vedder Terrace intentional community, the first thing you notice is the plate of cookies and ice water she had laid out on the coffee table. Her care for her guests’ comfort extended to her tidying up to make her home attractive and clean. She laughs, noting how her mom would be proud. It’s clear she has learned well.
Amber recently became a member of Bethesda’s Self-Advocates Advisory Committee. She joins five other self-advocates: Kevin, Kya, Meredith, Sandra and Yoshi; along with CEO Tori, two directors, one manager and one coordinator.
Amber prepared refreshments to welcome her guests who had arrived at her home to interview her for this story.
Amber makes sure we are seated comfortably and then she begins her story. First, she emphasizes that she is still learning the role. Since joining the committee she’s been learning there’s a wide array of possibilities facing them: “I’m learning what places we could go, what things we could discuss during the meetings, and getting to know everybody on the committee as well.”
Does the opportunity to contribute her ideas excite her? This is where her thoughtfulness shines through and we see just how well-suited she is to be a leader. She responds she first wants to hear from other self-advocates, from across Bethesda, to hear what they see as needs. She is naturally collaborative and interested in having those conversations with others, to know how she could best represent them on the committee.
One of the advisory committee’s roles is to gather input from other people Bethesda supports and help shape it into policy, practices and useful tools to help staff better support the people they serve. The self-advocate members of the committee have a big job: to hear from people we support across the organization and represent their voices. At a recent meeting, they started discussing how they might meet people. It’s something Amber wants to do and with her interest in others, she is well-suited for it.
Kya, a member of the advisory committee since it started in 2019, is also Amber’s friend. Amber is learning from her more experienced friend. Amber thoughtfully suggests there may be times she’d hesitate to speak at the committee on behalf of someone else, maybe instead consulting with Kya first. There’s wisdom in Amber in balancing eagerness to contribute with sensitivity
Amber (bottom right) enjoys being out and about with friends. left to right: Support worker Shanelle, Kya, Laureen and Amber.
Overall, she is excited about joining the committee. Where does she see this going for her? “I don’t know. Can’t tell you, truthfully. I really don’t know yet.” But she’s looking forward to the journey, to getting to know people she represents, the staff at Bethesda, and at other advocacy organizations.
She encourages others with diverse abilities in Bethesda to think of activities they’d like to do, as a group. “Anything you’d like to be involved with, say either a donation, a charity, a fundraiser.” She wants to spread the word that she and the other self-advocates want to hear from others receiving Bethesda services. “I want to go and meet people. And then just continue coming to the committee meetings to be a representative for other self-advocates.”
Amber ends our interview with one of her delightful trilling laughs and then offers us a tour of her home at Vedder Terrace.
UPDATE Self-advocates are encouraged and supported to engage and share their perspective and experiences with their community and community leaders as one way to build connection and belonging.
