“Nothing about us without us” is a popular phrase in the disability community that stems from the idea that individuals with disabilities deserve a seat at the table to voice their needs, desires, and preferences. This fundamental notion has long been ingrained in the Aspire Living & Learning community.

Self-advocacy groups empower people with intellectual and developmental disabilities to voice their opinions and act on issues that affect their lives. By focusing on empowerment, education, support, leadership and independence, self-advocacy groups are crucial in creating a more inclusive and equitable society where individuals can live fulfilling lives and participate fully in their communities.

At Aspire, you’ll find a blend of new and longstanding groups, such as Voices of U.S. in Maryland and ACTION in Connecticut. One of the newest groups is the Aspire Self-Advocacy Group. The group’s influence extends beyond state lines, uniting participants from four states where Aspire operates – Massachusetts, Connecticut, Maryland, and New Hampshire. Meeting monthly, in-person or virtually, participants come together under the guidance of Linda Kaiser, a dedicated human rights specialist.

Before the group’s inception two years ago, Kaiser noted that most individuals were unaware they could share their opinions on agency operations and policies. However, this has dramatically changed. Members now have a clear understanding of their ability to shape decisions and advocate for their needs, which has empowered them to engage more actively in the process. The group has been actively transforming the hiring process for direct support professionals (DSPs) to ensure that new staff align closely with the needs of the individuals they’ll support by developing relevant interview questions and updating the format. This has fostered an increased sense of ownership and involvement in their own care. The interview questions will be ready to implement once they have been made sufficiently accessible – including ASL and voiceover components.

When asked what the Aspire Self-Advocacy Group means to him, Angelo, a day program participant, expressed that having a dedicated time and space for open dialogue with his peers has been impactful. “I like the privacy we have when we meet outside of the day program. Privacy is important to me. It’s just us.” Behind the privacy of closed doors, individuals feel empowered to open up. Jacob, another day program participant, shared that “spending time with his friends” was his favorite part of the Self-Advocacy Group. His personality truly shines when surrounded by his friends.

To ensure order and fairness, the group adheres to ‘Robert’s Rules of Order’. This structured meeting approach guarantees that every voice is heard and every decision is made democratically. While Kaiser may guide the discussions, members take ownership of the group’s direction and initiatives. During meetings, they suggest topics they feel are important or relevant. This can include personal experiences, societal issues, or areas where they seek more understanding and support. Right now, the group is learning about the “Community Rule” – a policy mandating that individuals with disabilities have the right to a fully integrated life in their community. This knowledge has helped members better advocate for themselves when deciding on activities they want to participate in. Other topics of discussion have included Pride Month and bullying.

Within the next year, the group aims to be truly independent and run by the individuals it represents. Recognizing the complexities and challenges of establishing a self-sustaining group, members have taken the last two years to ensure that their foundation is solid and they feel adequately prepared. They’re committed to adhering to their rules and procedures – following ‘Roberts Rules of Order’, respecting each other’s opinions, holding each other accountable and keeping all matters discussed by members private. The principles of autonomy and authenticity drive their desire for independence. The impact of their work extends beyond the walls of their meeting space, and we are excited to see what is next for them.

Community, Stories of Impact

Empowering Voices: The Journey of the Aspire Self-Advocacy Group