Priscilla Carlson

JFK Partners

University of Colorado School of Medicine, CO

Priscilla Carlson, BS/BA is a Self-Advocate and Diversity Fellow at JFK Partners. Originally from North Dakota, Priscilla was an active member of their UCEDD, North Dakota Center for Persons with Disabilities (NDCPD), until she moved to Colorado in 2007. She became involved with JFK Partners Advisory Council, while attending college. After graduating from the University of Colorado Boulder with a BS in Broadcast News and a BA in Political Science in December 2012, Priscilla was able to focus more on disability rights and advocacy and was elected the co-chair of JFK Partners Advisory Council from 2013-2015. Now as a Self-Advocate and Diversity Fellow, Priscilla’s project focuses on systemic change in community-based activities, organizations, policy or programs. Inspired by her own experience as a person with a disability, Ms. Carlson’s capstone project is to develop a web-based mechanism to gather everyday problems experienced by people with disabilities that may be overcome through creative engineering solutions. With the support of Melinda Piket-May, PhD, Associate Professor of Engineering at the University of Colorado-Boulder, Engineering students can help solve these practical problems as part of a course project. Connecting students with the problems experienced by this community will: 1) increase inclusion and participation of individuals with disabilities in their community in meaningful ways, improving their quality of life; and 2) exercise students’ capacity for applying engineering principles from a lens other than their own, and may also be personally rewarding for students as they contribute to their community.

Project Narrative

1. Please describe your activities during your fellowship experience. Describe your final capstone project(s).
During my fellowship, I attended and fully participated in the Key Concepts in Neurodevelopmental Disabilities class during the fall and spring, and in the summer, the Leadership Dialogues class. The Key Concepts class delved into the interdisciplinary approach to issues that are involved in complex systems issues affecting individuals with disabilities, their families, and their providers. The Leadership Dialogues class also had an interdisciplinary approach, but with the providers (and the parent and self-advocates) taking a look at how we can be better at facilitating change, working in teams, and self-reflecting to better ourselves.

In addition, I completed five face-to-face weekend trainings, from November 2015 through May 2016, to complete half of a year-long life coaching certification through the Coaches Training Institute (CTI) to become a Certified Professional Co-Active™ Coach (CPCC). As part of my initial training plan, I attended the Writing Grants workshop, given by Susan Hepburn, Ph.D. to further my skills in seeking future funding for projects. I co-facilitated a round-table discussion with my former journalism professor, Paul Daugherty, on being a non-traditional student with a disability in a university setting. It was titled "Priscilla Reporting…" and was part of the Diverse Learners Awareness Week held at the University of Colorado-Boulder in April 2016. Over the past year, I gave numerous presentations to medical students one-on-one. I was also a guest speaker at their classes,presenting on the importance of understanding patients' perspective in clinical settings. Furthermore, I have been active in my local community by participating in walkability studies pertaining to urban planning in Louisville, CO. Until June 2016, I was a board member of Phamaly Theatre Company (www.phamaly.org), an all-disabled acting troupe. As a board member, I recruited new board members and promoted the shows. Another activity that I did was a photo shoot and was interviewed for my participation in the Colorado Department of Healthcare Policy and Financing (HCPF) newsletter in September 2016 for the Consumer Directed Attendant Support Services (CDASS) and the Working Adults with Disabilities (WAwD) Program (i.e., Colorado’s Medicaid Buy-In). I was one of the advocates who starred in the Public Service Announcement (PSA) videos for the Colorado Advisory Council for Persons with Disabilities (CACPwD) campaign Excuses vs. Reasons. This campaign shone a spotlight on people who take handicapped spots when they do not have a disability. Like the tagline reads: “No plates. No placard. No parking.” (https://youtu.be/whlvNtka0eI?list=PLl7fq55atU69J8sTyO6ucx6qQgo_xpSbx) This campaign was marketed heavily throughout the later part of 2015 and the summer of 2016, including billboards and the PSAs, which aired on local television channels.

For my capstone project, I designed a webpage (www.jfkpartners.org/ProjectInnovate) to promote a collaborative approach to providing unique innovations for people with disabilities. This is a joint effort between myself, JFK Partners, and the College of Engineering and Applied Sciences at the University of Colorado-Boulder. Along with the webpage, there are pictures of past projects and short videos about this partnership. In June 2016 I presented to the JFK Partners and other LEND graduates, and in August 2016 to the Colorado Developmental Disabilities Council (DD Council) regarding my project. I will have a Poster Presentation at this year's Coleman Institute for Cognitive Disabilities Annual Conference on October 6, 2016 in Broomfield, CO, as well as at the national AUCD Conference in Washington DC from December 4-7, 2016.

2. Who did your project inform, help, influence or impact? (UCEDD, individual, community, state) How?
My project was directed to impact engineering students and individuals with disabilities. By developing a webpage that fosters collaboration between individuals with disabilities, groups of freshman engineering students and connecting two Colorado campuses (Boulder and Anschutz), this project impacts the community and the state by providing a model that could be replicated in other UCEDDs.

3. Why did you choose to work on that project(s)?
This project was based on my own experience as a person with a disability who needed technology to keep up with my busy life. Upon hearing from a mother of a son who has cerebral palsy and uses assistive technology to help with his daily living activities, I thought of forming a partnership with my alma mater, University of Colorado Boulder, and Dr. Melinda Piket-May, Associate Professor of Engineering. Dr. Piket-May has a passion for helping individuals with disabilities by having her students help solve practical problems as part of a course project. Connecting students with problems experienced by this community will: 1) increase inclusion and participation of individuals with disabilities in their community in meaningful ways, improving their quality of life; and 2) exercise students' capacity for applying engineering principles from a lens other than their own, and may also be personally rewarding for students as they contribute to their community.

4. What did you gain from being a Diversity Fellow?
Being a Diversity Fellow has taught me a lot about looking at healthcare from a different perspective, the health professional perspective. As a “self-advocate,” I always pictured it as a tug-of-war or an “us vs. them” mentality; I thought that the medical professionals didn’t get “it.” Now, I think that since we are all on the same side, viewing the patients’ best interests at heart, an interdisciplinary training is important to keep the communication lines open!

I gained new ideas and perspectives from a day-long session with Tawara Goode from the National Center for Cultural Competence on “Increasing the Promotion of Cultural and Linguistic Culture within our Organization.” JFK Partners faculty, staff, and fellows attended this session to become more knowledgeable and cognizant of our perspectives on different cultures and how we can be more inclusive in all that we do. She expanded the definition of culture to include individuals with disabilities, which isn’t often included in the typical definition. The broadened definition of culture was also included in the guidance of the UCEDD Diversity Fellowship funding and I am grateful.

5. How will this experience impact your education or career decisions?
This experience will further my commitment to self-advocacy and advocating for other people with disabilities. It provided me with additional tools, skills, and connections that will further my ability to advocate for others and myself.

6. What are your future goals? Where do you see yourself 5 years from now?
I hope to continue working for JFK Partners or in a place that cares as much as they do for educating people about the importance of disability advocacy.

Five years from now, I would like to be involved in a program that integrates the medical model with the social model of disability through the self-advocate LEND trainees. Plus, I would like to be doing a book tour of my as yet unwritten autobiography!

7. What recommendations do you have for other fellows?
I recommend future self-advocates continue to educate the other fellows about the true history of disabilities. Everyone should know the persecutions, humiliations, experimentations, sterilizations and the eugenics movements that we have endured throughout history. We need to educate the other fellows about people like Ed Roberts, Helen Keller, Anne Sullivan, Stephen Hawkins or people like Rosemary Kennedy, who (just by her name and existence) changed history and set a path that made my life better and others with disabilities like me to have more opportunities. In addition, self-advocates need to know about the political movements, legislation, the social model of disability, and the possibilities that are out there for independent living. We haven’t gotten to a place of equality yet, but with each semester, there is a new opportunity to change at least one perspective and someone’s attitude.