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Sheenagh Interviews Carol Blessing; Research on Researchers

April 28, 2013

New Hampshire 8 10_n

“Research is formalized curiosity. It is poking and prying with a purpose.”  Zora Neale Hurston

We first met Carol when she and Lynda Kahn were hosting a TASH pre-conference workshop and were really excited about spending time with the co-editor of Conversations on Citizenship and Person-Centered Work (available through Inclusion Press http://www.inclusion.com and through our own online bookstore in a recipricol agreement).  The workshop was as good as the book – interactive, thoughtful, pushing to the edges of big questions, and Carol was delightful. It’s a gift to have her as part of this interview series.  Aaron

Sheenagh: Carol, you are working on a program at Cornell University where people “walk together in a learning journey.” A person with a disability has a champion and they learn together. Could you please tell us about how long you have been doing this and how it works?

Carol: The Citizen Centered Leadership community of practice was established in 2011.  It runs twice a year, in the Fall and in the Spring semesters.  We use an approach called “situated learning,” to present 15 weeks of core theory and field-based assignment across a multi-media platform.   The course is organized around the concept of citizenship because that is an identity that doesn’t use labels of disability to divide people.  The basic foundation of citizenship is freedom and responsibility and everyone is accountable to these elements.

There are six core, inter-connected topic areas that make up the course:  Citizenship and Leadership; the Community-Building Imperative; Person-Centered Work; the Abundant Community; Making a Life by Making a Living and; A Call to Action.  Each of these modules has several sub-topics built into them.  The material is presented by leaders within each of the field through video-taped interview and written content.  There is a learning journal and book called Conversations on Citizenship and Person-Centered Work (edited by John O’Brien and Carol Blessing) that help guide the participant through the course. 

People who join the Citizen Centered Leadership Development (CCLDs) course agree to contributing important investments:  one investment is their time.  The “seat” time for the course can run 3 – 5 hours a week reviewing the material in the learning platform on the computer.  Another investment is a willingness to apply the learning in what I call “place-based” communities of practice.  This means participants agree to talk with others about what they are learning and invite others into conversations that are meaningful about supporting the contribution of citizenship with and on behalf of people with disabilities.  The most important investment is that each participant invites two specific learning partners to join them on the journey.  One learning partner can be someone that the participant works with who knows the system and understands what has to happen to make real change happen.  The other partner needs to be someone who uses the services of that system.  The CCLD participant invites these people on a learning journey together to explore, discuss and take action over the course of several months.  It is important that the participant understands that the CCLD community of practice is not training or a program, but a shared experience in real life with real people.  Every Monday afternoon during the semester, the group gathers “live” in a webinar format to learn with and from each other.  So the last important investment is to be willing to share new learning with the larger group.

For more information, visit www.cclds.org

Sheenagh: Is there any other research that you are working on regarding people with developmental disabilities?

Carol: We did some work a while back in New York state around integrating person-centered practices into the assessment, treatment and release planning of inmates with developmental disabilities in the correctional system.  It was a very interesting project that I quite honestly didn’t think would make much difference.  As it turned out, after our training intervention on the concepts of citizenship and person-centered work was completed, the correction personnel and facility staff showed a statistically significant (positive) impact on how the inmate was viewed as a person and on the perception for his potential success upon discharge from the facility. This led to enhancements in existing skill-based learning opportunities for inmates and even the development of some new opportunities. 

 We are hoping in the near future to turn our attention to integrating person-centered work within the foster care system with young people who are on the edge of aging out of the system and don’t really know where to go or how to get there. 

Sheenagh: Do you think that it is important for people with disabilities be involved in research that relates to them?

 Carol: Absolutely.  I think it is unacceptable to think about messing in someone’s life as if someone knows better than the person themselves what they want and need in it.  I am a firm believer in participatory action research because it requires that anyone who will be impacted by the intervention is represented in the process.  Kind of a research way of supporting “Nothing About Me Without Me.” 

Sheenagh: Is employment for people with disabilities a focus right now in New York? Are there more people working now than in the past?

Carol: In March 2013 a report was issued from the US Census Bureau indicating that individuals with disabilities were less likely to be employed than individuals without disabilities, and those who were employed typically held jobs with lower earning and/or earned less than their non-disabled colleagues.  The statistics show that between 2008 and 2010, individuals with disabilities were almost three times less likely to be employed than individuals without disabilities.  The disability employment tabulation section of the report shows that individuals with disabilities account for about 6% of the 155.9 million civilian labor force in the United States.  So, yes, employment for people with disabilities is a pretty important area to continue to focus our efforts through the Employment & Disability Institute at Cornell, across New York state and nationally. (http://www.census.gov/people/disabilityemptab/data/)   

 Sheenagh: Can you tell me about someone with a disability who has been important to you?

 Carol: Sometimes I wonder how it came to be that I was drawn to social work and social justice through the pathway of disability.  I mean there are lots of ways to be an advocate around social justice, right? Why disability? 

A funny thing happens when you really love someone whose life in impacted by significant impairment.  You don’t see them as a person who is disabled.  Yet you still see other people from a disability perspective.  Kind of weird if you think about it, that there is a rejection of the label for one person and an acceptance of the same label for another.   This confuses me a lot.

 I have had the privilege of knowing and working with many, many people who carry the label of disability. Everyone has had an impact on my life in some way.  One day, though, I remembered that I grew up in a household defined by disability.  My dad experienced a serious stroke when I was 12 years old.  It left him with a significant cognitive impairment, which affected his speech, his memory and ability to think in logical sequence. He stopped working.  He stopped going places.  Later in his life, his disease closed off arteries and veins that required his leg to be amputated.  He never liked the fake leg that they gave him so he used a walker and hopped on one leg everywhere. 

 He’d wait on my mother hand and foot – bring her sandwiches, a drink, her cigarettes because she had her own brand of disability.  When I asked him why he wouldn’t let her fend for herself he said “because she needs me to do things for her, and besides, I love her.”  When I asked him why he didn’t want to go places, see people, get involved in the community he would tell me that he had nothing to offer, that he was ‘disabled’ and that he’d be too much trouble for people.  He believed that story in spite of my argument against it.  This generous, giving, funny, sensitive, loving, courageous, gifted man took his story of having nothing to offer to the grave with him.  He died believing a story that said that he was less than whole.  I never saw him as anything other than magnificent. 

Sheenagh: Is there anything else you would like to say?

Carole: Thank you kindly for the invitation to share on the 101friends.ca blog. Keep moving…

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