by Carrie Banks, Inclusive Services, Brooklyn Public Library
One hundred and fifty-five disability self-advocates, their allies and supporters attended the Nothing About Us Without Us: The Road to Self-Advocacy conference at the BPL Central library’s Dweck Auditorium on May 15. Spanish interpretation was provided throughout the event.
The half-day conference was cosponsored by BPL’s Inclusive Services, the Brooklyn Developmental Disabilities Planning Council’s Children’s Services and Transition Committees, and the Brooklyn Early Childhood Directions Center (BECDC). The sponsoring organizations represent people with disabilities from birth through the age when they transition out of school (21).
Each sponsoring group played a unique role. Organizing lynchpin, The Children’s Services Committee, picked topics and some speakers, and publicized the event to the teachers and families they represent. The Transition Committee brought in two additional speakers, and made a referral for a third. Their role was critical; working with schools throughout Brooklyn to organize the attendance of six classes of transition age students. The BECDC took on other aspects of promotion and outreach, and contributed copying and folders for the handout. Inclusive Services coordinated, hosted and staffed the conference; with Carrie Banks of Inclusive Services acting as MC.
Harilyn Russo, a feminist disability activist and author of Don’t Call Me Inspirational: A Disabled Feminist Talks Back opened the day, speaking about her own experiences as a self-advocate. When she described her “journey from denying my disability to embracing it as a positive source of my identity,” she was met by a resounding ovation.
Two panels of experts followed this keynote. The first, comprised of self-advocates included:
- Uly Ramos, from Self-Advocates of New York State (SANYS)
- Trina Hazell, from Voices of Power
- BrendaCleo Smith, from Mental Health Association of NYC
- Emanuel Frowner, Autistic Self-Advocacy Network (asan), Research Assistant at the Seaver Autism Center, Special Project Assistant at the NYC Autism Charter School
These panelists have a variety of disabilities, including intellectual, mental health, physical, and autism, but, despite these differences, they shared some common experiences. Each mentioned an adult whose support was critical to them as they grew up. Each had experienced barriers that shaped their desire to be a self-advocate. They all wanted to know about their disability as children and, for all of them, not knowing created more anxiety and frustration.
They all contributed to this advice for budding self-advocates:
- Start young. Get involved in decisions as early as possible.
- Go to your IEP meetings as soon as you understand what they are.
- Make your own choices; you’ll learn from your mistakes.
And they highlighted what they want allies to know and act on:
- Young people with disabilities want to know early on what their disabilities are. They already know there is an issue. Having a disability is not shameful and young people need to learn and talk about it in order to understand it.
- People with disabilities have their own voices, even when they struggle with communication. They want their families and allies to listen to them.
There was a strong, positive response to this panel. One conference participant, the parent of a young adult with a disability, shared this reaction:
“The panel of self-advocates offered valuable insight into how self advocacy and self determination are not static. The advocates pointed out they were open to parent and friends advice, supports and services, which, frankly is very similar how all people live in a community. I was really excited at the end when two students identified their personal/professional interests. That is a door opener to self advocacy and self determination.” Another conference participant commented that her favorite part of the conference was learning from the self-advocates on the panel “[h]ow to get around with a disability, how to advocate for myself, how people w/disabilities have jobs like other people.”
The second panel was made up of advocates and allies:
- Debra Greif, parent and Chair of the Brooklyn and Statewide Family Support Services Advisory Councils
- Merle Deane, a transition coach at the New York City Department of Education
- Josh Skolnick, Director of Transition and Employment Services, HeartShare Human Services
- Marilu Coriano, teacher New York League for Early Learning, William O’Connor School, a preschool special education program
Ms. Grief spoke about her experiences raising a child with a developmental disability. She and her son faced constant battles against the low expectations of others and the limits other people tried to impose on him. In part through her encouragement and teaching, her son has become an effective advocate and force to be reckoned with in the disability community.
Mr. Skolnick stressed that “[s]tarting younger and allowing for opportunities around independence will lead to better post-secondary opportunities.” He explained that “[a]dult Services are not an entitlement the way that educational services are. Therefore, if you, as seniors, want to have the services the way you want them to be, and want to do what you want, you need to speak up…” He left attendees with the question “It is your life. Do you really want someone else to be in charge of what your’s is like?”
Closing the second panel, Ms. Coriano discussed the importance of teachers taking a developmental approach and teaching very young children to be self-advocates.
To round out the conference Stuart Flamm, a parent and Chartered Special Needs Consultant, led an enthusiastic discussion of supported decision making. This relatively new model is an alternative to guardianship. It allows the individual to make their own decision with input from a group of supporters.
In many ways, the conference exceeded the organizers’ expectations. The broad participation of the disability community, the commitment of the schools to bringing students, and the power of the self-advocates who spoke were all beyond our hopes when we planned the event. One of the panelists, Emanuel Frowner commented Quite a few [people] approached me and told me that I was great in my presentation, which made me fell good. I also did some networking… gave out a few of my business cards. I really felt that I was making a difference.” And, the results went beyond the day itself; an immediate spike in attendance at Inclusive Services adult and teen programs can be directly attributed to the conference.
One attendee summed up the day nicely. “The message [was] that we are in control [sic] of our own destiny. Everyone has the ability to make choices.”