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IL Blog: My Journey to Independent Living

Susie Angel
CTD

August 27, 2014

When I was diagnosed with Cerebral Palsy in 1970, my doctor told my mom to treat me as normally as possible, and that’s what she did. Throughout school, I was mainstreamed into regular classes and had to do everything my friends did. In fact, I had a reputation as an overachiever who always ruined the bell curve for everyone else and made the honor roll almost every semester.  

At home though, Mom did everything for me because it was easier and much faster. It wasn’t until I was in my teens that I starting doing some of these things myself. For example, when I was 15, my physical therapist asked why I wasn’t dressing myself. When I didn’t have a legitimate reason, she gave me a couple tips that made it easier and told Mom that she had to let me do it. Starting to do these things made me believe that I would live on my own one day.

In my senior year of high school, I decided that I wanted to go to the University of Texas at Austin. Texas Rehabilitation Commission (TRC) agreed to pay my tuition, room and board on campus, and books after I used my grant money. They also agreed to pay for a live-in personal care attendant. I thought this was the perfect scenario, but little did I know…

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The first 18 months at U.T. was one of the hardest times of my life. Like most college students, I learned a lot about money and time management, personal responsibility, and better study techniques. On top of all that though, in order for me to survive, I also had to develop other skills: 

• Employee Management: My first attendant was a friend, another freshman. Bad idea. I didn’t know yet what I could do for myself, so she couldn’t do everything I needed. I eventually had to fire her and hire an upper classman who understood what it was like to be in college and knew how to manage her time better. 
• Self-reliance/ Problem Solving: The more things I could do independently, the more willing my attendant was to help with the stuff that I really needed her for.
• Multi-tasking: For the first time, when my wheelchair broke down, I had to deal with it. This meant I had to call someone to come get it, call TRC to make sure they would pay to repair it, and schedule various volunteers from the Dean of Students Office for People with Disabilities to take me to and from my classes. Then, I had to figure out how much extra time I needed to do assignments for each class. 
• Self-Advocacy: U.T.'s computers were IBM compatible, but I did my Computer Science homework on my adapted Apple computer. The programming languages were so different that I kept getting them confused on tests. I asked the Department to make one of their computers accessible for me, but they wouldn’t. I asked TRC to buy me an IBM computer, but they refused. Eventually, I gave up and changed my major to Liberal Arts. My first attempt at self-advocating may have been unsuccessful, but it made me more determined the next time that I had to stand up for myself. 
• Limit Recognition: I quickly realized that I couldn’t handle a full course load. I had to get doctor’s note saying that I medically needed a reduction in my course load from 12 hours to 9 hours per semester. This allowed me to keep my full-time student status, which my financial aid from TRC and my grants required. Everything was ok until I took on more hours than I should have to fulfill a foreign language requirement. As a result, I wore myself out, got pneumonia, dropped out of U.T., and moved back home with my parents.

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After two months of recovery, I enrolled at ACC. I felt like I was taking a giant step backwards. Not only was I only going to a community college, but I was back to living with my parents. Now, I love my parents and they were wonderful. But after that first taste of independence, there was no going back.

Thankfully, a friend told me about Herndon House, a year-long residential independent living program. Before I knew it, I was moving in, and over the next year, I learned how to:

• own a checking account and keep track of a checkbook registry
• go grocery shopping without an attendant
• plan a meal
• maintain a household and a budget
• manage attendants with respect
• speak up if an attendant wasn’t treating me right
• work with roommates
• communicate with medical professionals to get what I needed
• ride the fixed-route Capital Metro city buses and paratransit services
• apply for certain services
• strengthen my advocacy skills.

It was amazing to do all this while successfully attending ACC classes, especially after having such a hard time at U.T.

Six months before I finished my contract with Herndon House, I learned that a childhood friend who also has CP was moving to Austin. I helped him find an apartment, get hooked up with the services he needed, and taught him things that I had learned in Herndon House. We ended up moving in together and 22 years later, we're still at it, with each other’s support.

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My journey to independent living isn't unique. For a lot of people with any kind of disability (mild or significant), it can be done. The key is to find a way to transition from childhood into adulthood in the least stressful environment. With that, well, you can see what's possible. 

About Susie

Susie has an Associate's Degree in Communications from Austin Community College and a Bachelor's in Magazine Journalism from the University of Texas at Austin. She joined CTD as a VISTA in 2010 and joined the staff as a part-time employee in 2012. She edits and writes for the monthly e-newsletter, co-coordinates Pen 2 Paper, and heads up CTD's research department. Read Susie's full bio.