9 Jul 2018 — SpeakUp Editor
On July the 4th, many of us celebrated our country’s independence with fireworks, parades, and barbeques. Today, Tracy Rackensperger, PhD, USSAAC’s Vice President of People Who Use AAC and their Families, shares her firsthand perspective about achieving her own personal independence.
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Having a stable income and minimizing dependence on governmental assistance are some core goals of mine; so far, I have achieved these goals. My name is Tracy Rackensperger. I am a Public Service Faculty member at the University of Georgia in the Institute on Human Development and Disability. As a member of the Institute’s faculty, I develop course content in our Disability Studies Program and teach our introductory class. I also guest lecture in classes, write articles and grants, conduct trainings, complete research, and provide technical assistance. In August 2017, I successfully completed my doctoral program and received a Ph.D. in Social Foundations of Education. I believe my advanced degree will allow me to maintain the goals previously mentioned. The path to financial independence is challenging. I use present tense because having a stable income and minimizing dependence on governmental assistance is a continuing effort; there is no magical point where I can say, “Goals achieved! I can rest now.”
Let me provide some context for these goals. I use augmentative and alternative communication. About six months after I was born, a doctor told my parents I had cerebral palsy. He also told my parents a bunch of things about how cerebral palsy would affect me that later proved totally untrue (e.g., I would be in a permanent vegetative state). Due to how cerebral palsy really affects me, my speech is unintelligible to those who are not familiar with my speech patterns. In other words, having an augmentative communication device(s) is required for me to communicate with people who either have not interacted with me or have only interacted with me infrequently; they have difficulty understanding my natural speech. Individuals who interact with me regularly can understand my natural speech pretty much all the time. I also rely on a power wheelchair for mobility and various assistive technological devices for my independence. I live on my own with a huge dog (a pet, not a service animal). I have support people come throughout the day to assist me with activities of daily living (ADLs-daily self care activities such as grooming, eating, and toileting).
It was important for my family to assist me in being independent. Therefore, college and a career was in my future from the start. My family had high expectations of me from the beginning and used natural generic supports as much as possible. Our service system for people with significant disabilities was and continues to be, for the most part, about saying ‘no’ to people and shutting down possibilities. Our service system likes to tell people with disabilities, “You can’t do this, or you can’t do that. You can’t have a decent income. You can’t possibly do XYZ by yourself.” Also, our service system has created a false belief people have to be dependent on it for everything! No, they don’t! There is world that exists beyond the service system. One example is oftentimes I use sidewalks to get around my city. Some people act like I am committing a federal crime by doing this. Some people will say, “Why are you not taking paratransit?” or “Why isn’t somebody picking you up?” ‘Cause I don’t need paratransit or a ride; I’m on a perfectly good sidewalk here! It is my opinion these beliefs are amplified when one has difficulty expressing oneself or communicating. In my specific case, I think reactions are results of my very spastic movements and the way I speak. They are not used to someone like me being out in community (especially alone) and it contradicts their expectation of dependence.
When I lived in Florida, I tried getting the assistance the government provides to people with disabilities. I went to vocational rehabilitation (VR) twice–once during high school and once after attending graduate school (for my Master’s degree). When I went to VR during high school, they did not seem very interested in assisting me with anything, let alone paying for college. Therefore, I applied for and received the state lottery-funded scholarship available to all students meeting certain academic criteria. I received other scholarships as well. The second time I went to VR, they were more willing to help me. They bought me a desperately needed new power wheelchair and a new AAC device. I was thankful for that! They assigned me a job specialist to assist with in getting a job. However, she did very little to assist me in getting a job. I ultimately had to get my own job with the University of Georgia. I also went to the Social Security Office during this time, but my mother was told (because I couldn’t possibly understand anything) that I needed to become poor and never try to work so the state could take care of me forever. That did not go over too well. Currently, I live in a cheap, safe apartment, have minimal bills, and have the least amount of support I need to live happily.
My family having high expectations of me from the beginning and using natural generic supports as much as possible were two of the most important things that shaped my future. In 2005, I wrote an article for the ASHA Perspectives on Augmentative and Alternative Communication about how I landed a full-time job. However, with this blog post, I hope I shed some light on the two major things influencing my career and post-secondary education paths. I will respond to comments on this post.
References:
Rackensperger, T. (2005). The road to full-time employment. SIG 12 Perspectives on
Augmentative and Alternative Communication, 14(4), 8-9. doi:10.1044/aac14.4.8
Tracy Rackensperger, Ph.D. currently holds the faculty position of Public Service Representative within the College of Family and Consumer Sciences, Institute on Human Development and Disability (IHDD) at the University of Georgia. Dr. Rackensperger is part of the faculty team who teaches classes within IHDD’s Disability Studies Certificate Program. Additionally, she guest lectures in classes, composes articles, conduct trainings, performs research, provides technical assistance, and writes grant proposals. She has used augmentative communication for over 35 years. She has no relevant financial or nonfinancial relationships to disclose.
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Jill E Senner, PhD, CCC-SLP
SpeakUP
Editor-in-Chief