GCDD’s Pat Nobbie Taking on a “New Club” - MAD Winter'13
The following is a feature article on the departure of GCDD Deputy Director Pat Nobbie from the Winter 2013 Making a Difference magazine.
GCDD's Pat Nobbie Taking on a "New Club"
By Pat Nobbie, PhD
Pat Nobbie, PhD, Georgia Council on Developmental Disabilities' (GCDD) deputy director, has been honored with a Joseph P. Kennedy Public Policy Foundation Fellowship and will be leaving GCDD after almost 12 years to work on policy on a national level in Washington, DC. She will serve as staff to a congressional committee.
Like many parents of children with disabilities, Pat Nobbie's life direction and career was shaped by her daughter Mia, who has Down syndrome. After Mia was born in 1984 in the US Virgin Islands (VI), Nobbie quickly realized there would be many challenges and blessings found in raising a child with a disability. At that time, the VI often segregated children with disabilities in different classrooms and separate schools or even kept them out of school, and immediately Nobbie began asking questions. This started her journey in advocacy that would eventually lead to her career working on public policy to support integrated community living at GCDD.
Since 2001, Nobbie has been instrumental to both Georgia's disability community and GCDD. She developed, coordinated and advocated the policy and legislative agenda for GCDD with input from the community, while successfully establishing partnerships with advocates from the aging, mental health and healthcare arenas that effectively align with improving the policies and programs for people with disabilities. She has been responsible for tracking state and federal budgets and legislation that affect people with disabilities. In addition, she coordinated efforts under the statewide Unlock the Waiting Lists! campaign that has resulted in over 4,000 new services, new family supports, support for special needs foster youth and waivers for individuals with physical disabilities over the past seven years.
While working to make numerous improvements and advocate for more supports and services for people with disabilities, Nobbie has helped push transition and employment, family support and managed care to the forefront of reform in Georgia's disability community and supports approach.
Though she will be missed at GCDD, Nobbie will continue to pursue her passion for improving the quality of life for people with disabilities on the national level. Below is her personal message as she says goodbye to Georgia:
This was my dream job. When I applied to the PhD program at the University of Georgia in 1996, I stated in my application that my motivation for seeking a degree in public administration was because of the birth of my daughter Mia. I had been engaged in many public programs and thought surely they could be done better.
A couple of months ago, Voices for Georgia's Children interviewed me for a video, and one of the last questions they asked me was, "What keeps you going? What gets you up every day?" And I responded the same as I did almost 15 years ago. I always think things can be better, and we have to keep working until they are.
So, what would make things better? The "Social Cure." A very thought-provoking book called, Join the Club: How Peer Pressure Can Transform the World by Tina Rosenberg, portrays stories of challenging human conditions around the world where peers were employed to pressure their fellow humans to change their health, political and academic behavior in a positive direction. Her thesis states, "The 'Social Cure' can change behavior by helping people obtain what they most care about ... the respect of their peers." And, it can change communities by working on the most common and deeply felt human need – to belong.
My motivation for considering the ideas in this book is to answer our burning questions: How do we gather the necessary political capital to "adequately fund" the entire system, from front-line workers to behavioral supports to person-centered planning? How do we change expectations in employment? How do we solve the challenges of integrated residential support? How do we get beyond what I call "the paradigm of 'put'?" such as "They're vulnerable and incompetent, let's put them in an institution." Or, when that became unfashionable, we said, "That's not right, let's put them in the community." But how? We are forever challenging campuses that are self-contained with horseback rinks, gardens, gates and golf carts, while the community that lives outside the gates thinks, "Oh, this is so nice. How many people with disabilities can we put in there?" It's like they are tchotchkes and proper placement is the important thing.
An important question is, who is the peer group for people with disabilities? Despite best intentions, people with disabilities have been separated from their typical peers due to the nature or perception of their disability or their services and supports. So, how do we find peers to start the conversations and relationships with other peers and use those peer groups to change the social norm to propagate the "Social Cure?"
Tell Stories: The Disability Movement has a long history of storytelling. Rosenberg says the importance of stories is that they introduce into common language and experience the behavior based on the most powerful of human emotions – the longing for connection with one another. Stories can compel us to shift our understanding of the world. I have previously written about how Mary Kissell's story of creating Georgia Options, a grassroots nonprofit organization for her son, changed my whole perspective. I suddenly saw a future where it would be entirely possible for Mia to live in her own place with people who care about and support her, and it wouldn't necessarily have to be me.
When I had just been told Mia couldn't work with children because she would never pass the tech school entrance exam or get the certificate, the story Robyn Berger told me in an elevator once about her daughter Lori working in a day care center gave me hope. Her brief counter-narrative encouraged me not to believe everything I was told.
Both of these stories were shared by peers – other parents, walking the walk. Mia lives in a home with a family that cares for and supports her in addition to me, and she has taught Sunday school to four-year-olds for 12 years now. Missing those stories, who knows where we would be. Again, Rosenberg relates, "The moment someone triggers in your brain that the dream is possible, so much changes. You start looking at life in a different way."
We need a peer network for all of our young adults, especially as they prepare to exit school. It is their peers that will signal to everyone in the community that this is an individual with a life, and not a tchotchke to be "put" somewhere. Market an Identity: Peer pressure works because it communicates an identity as a condition of belonging to a group of like-minded people. Peer groups define us in obvious and subtle ways. In a new world, when people are uncertain how to behave, they look around to see what their peers are doing.
That is why in terms of our community, we have to see people with disabilities out there doing the same stuff as others, such as frequenting the same neighborhood places as other people, because that will become the norm. When people with disabilities are invisible or treated like they are invisible, they are absent from the norm and we miss
the lesson.
We are trying to create new "clubs" through initiatives such as Partnerships for Success, post-secondary options in Project SEARCH and GCDD's Real Communities projects and involve people in creating the new norm. That new and different place is where everyone wants and should belong.
Produce Protagonists: Political space is never granted. It is always conquered. According to Rosenberg, revolutions "fight the fatalism and passivity" that accompany the status quo. This "fight fatalism and passivity" phrase made me think of the Unlock the Waiting Lists! Campaign. There are 7,500 people on the list. We have 100 waivers proposed for the budget this year. We got 100 waivers last year. Obviously, this doesn't meet our needs.
We need more protagonists. Without constituents' protests, Unlock is about the cause of the waiting list and not about you or the people on the list. We have to make it personal. As House Minority Leader Stacey Abrams says, "Show up. Stand Up. Speak Up."
Be Visible: The hurdle for mobilizing people can also be that what is being protested is not yet visible. When everyone is at home taking care of their own, they are not visible. When people were in institutions, they weren't visible. It even became an issue when someone got in with a camera.
This is why we need to tell stories and be present. Without a narrative of situations, citizens see no problem. For example, why is there no widespread movement to have people with disabilities in real jobs in the community? Because there aren't many people with disabilities in real jobs in the community. It's not visible yet, so people don't see it, they can't point to it and say, "That's what I want."
Change the Social Norm: Rosenberg observed that once people know the social norm, they will take steps to abide by it. She calls this "peer proof." In the Partnerships for Success high schools, the kids with disabilities are in leadership positions; they are tailgating, going to prom, the mall and participating in games and community service; they are helping each other at their Individualized Education Program meetings; they are asking priests to make first communion available to kids whom everyone thought couldn't prepare; they are participating in coming-of-age parties in the Latino community. Everyone was surprised when some of these situations came up.
Adults and parents thought they were being considerate by sheltering their kids from a social life they thought was outside of their child's ability, but they simply hadn't
asked. The new norm is to ask, and we are discovering that the kids have answers and then expectations.
Rosenberg asks, "Are we too comfortable? In a democracy, the 'Social Cure' must overcome our busyness and our discomfort with participating in public life." America has a cultural history of self-sufficiency AND a tradition of joining. To what degree those foundations remain will be determined by us and our peers. We will not change the employment paradigm, the residential living paradigm or the paradigm of "put" without a peer group that has developed and marketed an identity for competitive employment and integrated living, a visibility in the community and membership.
So again, "Show up. Stand up. Speak up." Write. Tell your story. If you have services, say "Thank you. This is what I can do because I have support." If you need services, say, "This is what I could do if I had support." Get a pledge. Start a petition. Relay the counter-narratives to each other. Keep high expectations. Bring people in. Be visible.
It only took a few stories for me to think about Mia's life in a different way. You could be that story for someone else. But let's tell the story of living in the community in a typical home, going to work in a real job, having friends of all kinds, practicing a faith with the whole congregation, going to college, falling in love, etc. Let's tell that story. Let's join THAT club.
have really loved this job. Everyone I came in contact with, who made me laugh or cry, who yelled at me, persuaded me, dragged me into a corner from a meeting to tell me like it was, called me late at night or who showed up for coalition meetings or Disability Day, you have all contributed to who I am today. And, I promise to keep working until things are better.
