Impact Feature Issue on Postsecondary Education and Students with Intellectual, Developmental and Other Disabilities

Kira Fisher is a new trainee in the year-long Leadership Education in Neurodevelopmental Disorders (LEND) program at the Carolina Institute on Developmental Disabilities, University of North Carolina, Chapel Hill. The primary purpose of the program is to prepare professionals for cutting-edge leadership roles that will allow them to participate in improvement of the health status of infants, children, and adolescents who have, or are at risk for, developing neurodevelopmental and related disabilities, and their families. She is the first student with a disability to be admitted to the North Carolina program. Here, she describes her perspective one month into the program.

I have been asked why I wanted to be a trainee in the LEND program at the Carolina Institute for Developmental Disabilities (CIDD). To answer that question, I need to explain a little about my background. Even when I was a kid, I saw my life as being important, although things were hard. I had to deal with lots of personal challenges because of cerebral palsy and I learned to accept things in stages and to ask for what I needed. I guess I had advocacy skills without knowing what that was.

I was in inclusive settings in high school and college and I had to ask for accommodations, like using the elevator (I got my own key). A turning point for me was being the first person in North Carolina with a disability to serve in AmeriCorps. That experience taught me that even if I failed I could learn from challenges. After that, I spent three years trying to find a job, but I volunteered during that time with the Acting for Advocacy Advisory Committee. Eventually, I was hired to work on a grant, Youths for Advocacy, collaborating with other self-advocates training high school students.

Becoming a LEND Trainee

Last spring I was approached about the opportunity to participate in the LEND program at CIDD. It involves training with a group of other students for two semesters. One requirement of the training is a course, Developmental Disabilities Across the Lifespan, and there is also leadership training.

At first I felt honored about being selected, and I got lots of positive feedback from my family and some of my friends. I was told that this would be a "pilot" and there would be a coach (a doctoral student in Occupational Science) to work with me. All the trainees are assigned to mentors and I would have two. Even though I was excited, I had doubts, too. I didn't know what it would be like. I would have a change in status from being a supervisor in a program to being a student/trainee, and I felt maybe my co-workers were not supportive. I already knew one of the mentors, but I was uncertain about working with the other one. I started to feel more and more anxious and I was overwhelmed by all the changes – completing my current employment, having to change my schedule, and arranging transportation. To get started, I had to enroll in the course and take some self-assessments. I met with my coach and mentors, but I didn't really know at that time what I was getting into.

Initial Impressions: The First Weeks

I initially realized that participating in the LEND program was going to be harder than I expected. There was a lot already happening in my life because I was still working on the other project. I had to change my transportation (and my life) so that I'd be at CIDD one more day to keep up with everything I had to do.

The Leadership Intensive (3-day workshop) was INTENSE all right. We were told to balance our past experience with learning new information and having new experiences. To disconnect from my past was really difficult. My self-image is connected with advocacy and I've been working in that area for a long time. The intensive brought up negative memories and feelings, like "you'll never be able to do that" and "you'll always need help with anything you do." I was confused about the process and going through this negative mess. I asked, "Why am I here?"

So I had an emotional melt-down and cried throughout one day. I didn't want to continue, but I didn't quit. My coach and one of the instructors were very helpful. They listened and reminded me that I'm a leader despite what the outside world might think or how they see me, and they assured me that it was okay to feel this way. I also talked to other students and found out they were going through the same thing, internalizing, and I hadn't realized that. I tried to learn through what was happening.

The week after that the course began. It's problem-based learning with case studies and a team approach. I met my six group members and got the first assignment. My first response was: how am I going to do this because of my physical limitations? When I met with my coach we discussed accommodations for the class. I couldn't record anything because of confidentiality. I decided to learn how to use an iPad.

A Few Weeks Later

I offered to be co-facilitator for the case study in the first class, which happened to be about cerebral palsy. I met with the other student facilitator and we divided the tasks. She did most of the typing on part one, which was reading, answering specific questions, and doing some research on the Internet. For part two, I typed the additional probing questions. That took me a long time and I did it over the weekend.

The class went well. The students participated and there was a lot of discussion. I didn't expect this to happen but I had an emotional reaction empathizing with the person: underlying fears of losing my parents and what might happen next, and fear of ending up like that individual. My mentor met with me later that day and we talked through my emotions. I feel like we are on more of a human level now.

Goals and Expectations at This Time

I'm trying to resolve the issue of seeing myself as an advocate. I've already made that part of my life clear to everyone. In this setting, everyone in the course as well as the faculty are advocates for people with disabilities.

I want to listen more. Some people with disabilities have a tendency to think they need to speak up because others aren't listening or don't understand, or because of their previous experiences. Or, like the woman in the case study, they just shut down. I want to learn more about other clinical disciplines. I'm trying to separate my personal feelings from my professional goals.

What Challenges Do You Foresee?

I have personal challenges because of the time it takes to complete the course requirements and the additional project that all LEND trainees do. There are unknowns about the course demands in the future. I'm using the iPad but it's been a long time since I was a student and there's a lot to do. It's hard to keep up with everything. I'm hopeful about balancing learning with self-doubt.