DSQ > Fall 2008, Volume 28, No.4

Now Coming To the Stage…

My name is Tony Jackson and I am a power wheelchair user, as I was born with Arthrogryposis Multiplex Congenita. I have complete sensation throughout my body but limited range of motion in my arms and legs. I am also a 2007 graduate of Arizona State University. This memoir is broken up into two main parts, as I had two separate undergraduate experiences at ASU: one in which I earned a bachelor's degree in social work, and later, a second in which I earned two more degrees, in broadcast journalism and German. Each of these periods presented its own unique challenges and life lessons. I will share with you some of the great (and not so great) moments I had as a student at ASU, including my time living in the dorms, going to class, and my attempt to study overseas, among other things. Some topics will move between my two periods at ASU, but I will clarify the timeframe when needed.

Arizona State University (ASU) is located in Tempe, a part of the Phoenix metropolitan area. ASU has a very large disabled student population, many of whom are wheelchair users. It's easy to see why, as Tempe is located the desert; therefore, the area is flat and very easy to navigate in a wheelchair. Nearly all of the sidewalks have usable curb cuts, the city buses are all wheelchair accessible, and the area has roughly 300 days of sunshine a year. Growing up as a military brat, I have lived in many different places and Tempe is by far the most wheelchair-friendly.

The Debut (1994 - 1999)

Getting accepted into ASU was an exciting time for me and my family as I was the first person to go to college directly from high school. I remember the day I received that acceptance letter in the mail; I was filled with such sense of accomplishment and joy. I thought, "Finally, I'm going to be a college student!" Images of the film "Animal House" raced through my head and I couldn't wait to get out on my own. After the excitement died down a bit, however, the thought of living away from my family for the first time was a little intimidating. My family had taken care of me for most of my life leading up to that point. I had been to a camp for disabled children and strangers took care of me there, but this was different. I wouldn't be coming home after two months; I was going to be out of the house for good. Thankfully, my dad set up caretaker services for me so I could focus on the educational endeavor I was about to embark on.

The trip was a three-hour drive north and as I arrived in Tempe on that scorching August day, I realized I wasn't dreaming. I was really going to be living on my own. During the week leading up to the start of the fall semester, my dad stayed with me and handled caretaking duties. After that, I was on my own.

I'm Hungry and Need a Shower

Going through my daily routine (getting out of bed, showering, dressing, etc.) was something I had always taken for granted because I relied on my family for assistance. Now, I was in a situation where I actually had to train someone on how to take care of me. It was a little awkward at first as I had to actually think about the steps involved, and then relay them to someone in an understandable way. Overall, the transition went fairly well. My caretaker handled nearly everything. He bathed, dressed, and groomed me, but a long time passed before he helped me with eating. Why? Well, I didn't ask him to. Surely, he would have gone with me to the cafeteria if I had asked him. However, I just felt awkward taking him with me. Instead, I asked the cafeteria staff for help. After a year of eating at the cafeteria, I was told that the staff would no longer be able to give me help for liability reasons. At that point, I had to rely on my caretaker to eat. However, I still didn't bring him to the cafeteria with me. By that time, I had a fridge and a microwave, so I started eating in my room, with the help of my caretaker.

You're probably wondering why I went through so much trouble (and starvation), when I had willing assistance at my disposal. I'm pretty open about most aspects of my life and I'm willing to answer any question someone may have about me, but the time I spend with my caretaker is one thing I like to keep separate. At that time, I simply felt uncomfortable about bringing my caretaker with me and giving people this little window into my daily life. In addition, I was still adjusting to the idea of having a caretaker that wasn't a member of my family. Although it took me a few years to get to this point, I've become much more comfortable about exposing such a private part of my life.

All of my attendant care services were paid for by my insurance through the State of Arizona. I was allowed four hours of attendant care a day, two hours in the morning and two in the evening. Since there was no way that I was going to bed at 5pm every day, I had to figure out how I was going to get into bed at night. Luckily for me, there were some very understanding people living on my floor, especially one exchange student from Japan. He helped me into bed every night…until he hurt his back lifting me. I felt really bad that this guy hurt himself because of me. He eventually healed, but I needed to find more durable help. Thankfully, the folks I had befriended in the neighboring dorm were understanding and helped me from then on.

I had been lifted into bed my entire life and didn't know about Hoyer lifts at that time. Looking back, it may have been easier on me (and my friends' back muscles) if I had just hired someone to come in at night. However, this was simply not an option as a poor college student. In addition ASU wasn't of much assistance in this matter because the Disability Resource Center deals mainly in issues regarding the classroom and academics. They do provide a limited amount of other services, but attendant care services is not one of them.

The Bachelor Pad

As a student at ASU, I lived almost exclusively on campus. It was extremely convenient and it didn't cost much more than off-campus housing. The dorm I lived in during my first two years was "accessible," but only in a limited sense. The hallway leading in and out of the dorm had an automatic opener, but my room was lacking this helpful piece of equipment. Whenever I left my room, I had to pull on a handle bolted to the door and leave it slightly open so I could get back in when I wanted. Thankfully, nothing was ever stolen…at least nothing that I know of. My room was a standard room with a retro-modified bathroom; this meant that the bathtub was taken out and tiles were installed to make it a roll-in shower. Hand rails and a shower hose were also added. Although the bathroom was modified, it was still small and there wasn't much room to work. The only other modification the room could claim was lowered closet shelving. Despite the problems in that first dorm, on-campus housing is one area where I have seen great progress made by ASU, and my next dorm room was evidence of that.

After living in the same room for two years, I moved into another dorm because I had taken a job as a Resident Assistant. My new room was light-years ahead of the previous one in terms of accessibility. I was given a door opener, similar to a garage door opener, which could open two separate doors; in this case, the doors to the building and my room. Finally gone were the days of coming home and hoping my TV was still there. The room also had lowered light switches, a sink that I could roll my chair under, and a height-adjustable computer desk. The bathroom had plenty of space and a much higher (and high-powered) toilet. That toilet would suck out your soul if you weren't careful. Although my new room was much smaller than the previous room (which had been a double room), it was also much more accommodating.

After living in that room for two years, I moved into an off-campus apartment. The previous tenant was a friend of mine and a power wheelchair user. His apartment was similar to my first room, retro-fitted with modifications. It wasn't great, but it worked. Despite the varying levels of accessibility of living quarters, I had conquered living on my own without feeling like I needed to rely on my family. However, I also had to figure out what I was going to do when I left the cozy confines of my home and went to class.

Excuse Me, Is This English 101?

Throughout my K-12 education, I had always had an assistant who accompanied me all day, helping me get my books and paper out of my bag, eat lunch, and do anything else I needed. Once I moved on to college, I realized that help was no longer going to be there. Students could get paid to be note takers in individual classes, but having someone follow me around campus all day was not something the Disability Resource Center provided. Since I always took my own notes, that service wasn't something I needed. However, I did need help with getting my notebook out of my bag and packing my things at the end of class. What was I going to do? Well, for about the first week of my freshman year, the answer was nothing. I was just too shy to ask for help. I think it took someone offering me help before I felt comfortable asking for it. As time went on, it became easier to ask for help as I realized that people didn't mind. In addition, asking for help broke the ice, so I met quite a few people.

I've seen the ASU campus go through huge changes in terms of accessibility over the years. The accommodations provided are by no means perfect, but ASU does a pretty good job. For starters, buildings on campus are equipped with accessible entrances. Granted, some doorways could be a little wider, but now all buildings are fitted with automatic door openers and even level entrances. This was not always the case. I once had to drop a class because I couldn't get into the building. As horrible as it sounds, I simply accepted that I was unable to attend that class and registered for a different one. That building has since been renovated and is now accessible.

I now realize that, if I had complained, accommodations would probably have been made. An example of this was a class I took which was relocated twice because the buildings simply were not very accessible inside. The elevators were in awkward locations and I couldn't reach the buttons inside or outside the elevator. Eventually, we found a building that worked.

In similar fashion to my first dorm room, sometimes classrooms were "accessible" only in a partial sense. Most of the classroom buildings at ASU are over 20 years old. Seating arrangements are typically individual desks or long tables with chairs. Since I write with my mouth, this often made it difficult to take my own notes and complete tests. However, some of these long tables have raised sections for disabled students. I remember one classroom in particular that had one of these tables, but the raised section was missing. Missing! Imagine table legs bolted to the floor and rusty screws exposed because a piece of the table was gone. That's what I was greeted with on the first day of the semester. I called upon a search team from the Disability Resource Center to locate the missing piece and they found it…it just took a week and a half to do so. In classrooms with the chair/desk seats, teachers have tables at the front of the classroom for their materials. I would use these tables to take tests, but I always felt awkward trying to take notes so close to the instructor. I needed that buffer zone that everyone else had.

Occasionally, I would be in a classroom with nowhere to write. If a classroom had no place for me to take notes, I could request accommodations from the Disability Resource Center. However, this accommodation usually ended up being a table that may or may not have been of a suitable height. However, my fellow classmates were always willing to share their notes with me if I needed them. In addition, I would take tests at the Disability Resource Center on campus if classrooms had tables that I couldn't reach. If I was late and the classroom door was closed, I usually had to knock to get the door opened. I always felt a bit embarrassed because the whole class would be disrupted so I could get in. It was never an issue for the professors, but embarrassing for me nonetheless. Because I took so many classes at ASU, adapting to classrooms became easier as time passed.

I Need To Get A What?

Many people who have attended college know the university experience is more than simply living in the dorms and going to class. Students need to eat pizza at 2 AM and go check out the latest underground bands. Students also know that leftover financial aid after tuition, books, and rent have been paid, is barely enough to buy Ramen noodles. For many, this means getting a J-O-B. Working on campus is the top choice for many people because one doesn't have to travel very far for work, and employers are usually understanding to a student's needs. This was the route I chose to take.

My first job on campus was in the dorms as a Resident Assistant (RA). A Resident Assistant is typically an extremely dependable, responsible student put in charge of a floor and given the task of making sure the students live by the rules. No drinking. Turn down your stereo. Please don't write messages on your neighbor's door with shaving cream. Why are you terrifying everyone by walking around in nothing but your jock strap?

Why on earth would anyone want to deal with that, you ask? Well, free housing and a meal plan were a pretty nice incentive. And regardless of the benefits, I wouldn't trade the experience for anything. I learned a lot about myself, and I met some great people whom I'm still friends with today. A few years later a friend, who was my boss at the time, told me that my time as a RA almost didn't happen. Apparently the upper management at Residential Life questioned whether I would be able to perform the duties necessary to be successful, namely, night watch duties. These entailed patrolling the floors at night and being on-call if an incident were to arise. However, I did the job and I did it well. The management thought so too, and rehired me for a second year.

After my reign as a RA came to an end, I got a job as a Computing Assistant with the school's IT Department. Though it wasn't by design, many things in the computer lab were accessible for me and made my time at work much easier. However, if I ever again have to hear someone say, "I just lost my term paper, help me," it'll be too soon. My job as a Computing Assistant was the last job I held during the work for my first bachelor's degree. After all, I couldn't stay in school forever, right?

Encore Presentation (2002 - 2007)

After graduation, it was time for me to face the harsh realities of the "real world." So, like many new and enthusiastic college graduates, I scoured the landscape for my first proper job. Unfortunately, my dreams of raking in piles of cash were quickly shattered as I found myself having a tough time finding a job as a social worker. Every job for which I interviewed was for a case manager position. This required me to have my own reliable source of transportation. Apparently public transportation wasn't reliable enough. Who knew?

All of this rejection was really discouraging and after working a couple of jobs completely unrelated to my degree, I decided I needed to take my life in a new direction. What was I going to study? People had always told me I had a good voice, and being a radio DJ sounded like a lot of fun. After some research and deep consideration, I went back to school to major in Broadcast Journalism. I could have pursued a Master's degree, but chose not to. I felt that I needed to learn the basics of broadcasting rather than write a 150-page thesis. Besides, the program wasn't going to be any longer than the Master's program. In the fall of 2002 I returned to ASU for a second Bachelor's degree.

I'm Back! Who Missed Me?

After being away from school for so long, it felt strange to be back in the classroom with people who were six to seven years younger than me. I felt like the "old man" on campus. Honestly, I also felt a slight sense of failure. I had already gone through school once, but didn't make it in the "real world". In addition, all of my friends had jobs and were making a decent living for themselves. Here I was back in school, trying to find a sense of direction. Looking back, I'm glad I did it, but it felt really awkward at the time.

When I first returned to school, I lived a few miles from campus. Taking the bus was starting to become very inconvenient, so I decided to move back into the dorms. Coincidentally, I was assigned to the same dorm I had lived in during my freshman year. The building remained essentially the same, until I got to my room. This time, I stayed in a room that was actually designed for a disabled student. I was impressed. Automatic door, wide-open bathroom, adjustable desk, this place had everything I needed…except for space to move around. It was a bit cramped. After a year there, I finally moved into a dorm room that had everything I needed, including space.

Going to class was much the same story as before; many classrooms had accommodations and some were better than others. However, the biggest changes I noticed were in classrooms located in the new buildings on campus. Most of these rooms were equipped with automatic entrances and powered, height-adjustable desks. I understand that it would be difficult, and costly, to make all classrooms that accessible. However, I certainly appreciated the effort ASU put forth to make things in the classroom easier for disabled students.

Hello? Is This Thing On?

Entering the Walter Cronkite School of Journalism, I naturally wanted to learn the fundamentals of broadcasting, but my main goal was to get experience to prepare me for professional radio. So, without any previous training, I joined the campus radio station and learned how to be a DJ. I also learned how to edit sound, produce a live broadcast, and conduct interviews. The radio station was not exactly wheelchair accessible. The broadcast booths were tiny and the CD players weren't within reaching distance. It took time to adapt and with some trial and error, I discovered that using a rubber-tipped stick to push buttons solved most of my problems. Things worked out so well, I began spending all of my free time there. Some of my friends were wondering if I had fallen off the earth.

I was at the radio station so often that eventually I got paid to be there. After three years of working my way up, I was named Station Manager. The moment I was hired, I immediately worked on making the station more accessible. There wasn't much I could do, because the building was so old, but I did manage to convince the school to install two automatic door openers that allowed me to easily get in and out of the station. Those door openers paid huge dividends during that year.

The other major challenge I faced as a Broadcast Journalism major was the final course. This course consisted of students producing weekly TV news broadcasts from start to finish. What was I going to do? Be an anchor? No way. Besides, the news desk wasn't built to accommodate a wheelchair. I also had no desire to be under those hot lights and in front of the camera. Believe me when I tell you that I have a face for radio. Would I operate one of the cameras? My instructors encouraged me to try during the early part of the semester, but it was a disaster. Trying to use a TV camera with a wooden stick is even harder than it sounds. Fortunately the class needed an audio person, and with my experience at the campus radio station, I was the man for the job. I did that for a semester and I think I did fairly well. My teachers thought so too, as they gave me an A.

I finished the Journalism degree, but I wasn't finished with school, as I had discovered the wonderful world of German. I liked it so much that I wanted to keep learning, so I decided to add it as a second major. I figured one more year of school wouldn't hurt. Besides, I had already been at ASU since 1968. Okay, maybe not. It just felt like it sometimes. I went through the German program and passed with flying colors. I loved everything about it; the classes, my professors, and the foreign exchange students I befriended were fantastic. One important thing was missing though. One thing that, even today, I wish could have happened.

Can You 'spreken zee Deutsch'?

Every year, thousands of students participate in study abroad programs to enhance their education and experience the world. I wanted this experience too. I had visions of studying at a German university, waking up every day and saying, "guten Tag," and stuffing my face with bratwurst. However, I quickly found out how difficult it is for physically disabled students to venture abroad. I knew advanced planning would be necessary. I had to contact the German university to arrange accommodations, buy electrical outlet adapters for my power wheelchair charger, and take care of other things in order to spend a year overseas. Unfortunately, that was just the tip of the iceberg. I discovered that I also needed roughly 40,000 Euros (about $57,000) to fund an entire year in Germany. Cutting the trip in half was still much more than I could afford.

The majority of the cost came from my attendant care expenses, and costs in Germany were comparable to those here in the US. In other words, it wasn't cheap. Although I had health insurance through the State of Arizona that covered my attendant care expenses, that coverage would be discontinued if I left Arizona for more than 30 days. Even more agonizing was the fact that, as an SSI recipient, I could continue to receive those payments for up to a year if I went overseas to study abroad. If I could continue receiving SSI payments while overseas, why couldn't I keep my insurance benefits? I would still be considered an ASU student, albeit living somewhere else. The other option would have been to bring someone with me, but that was out of the question. They would need a work permit, which extremely difficult to obtain. Also, who was I going to convince that dropping their life and coming to Germany with me for a year was a good idea?

I looked to many different groups for help, but it just wasn't enough. I applied for what seemed like thousands of scholarships and called various organizations. I also contacted administrators at ASU to see if there were any university resources available to help me. All of those phone calls and e-mails eventually led to a meeting with the university president. After I presented my situation, he assured me that the school would do their best to help. I was really hoping that they would magically find a way to send me. However, they ended up telling me what I already knew: I needed sufficient insurance to cover me and they couldn't provide that.

Now what? My friends suggested having a benefit concert, but I refused. I felt those should be reserved for more important causes. Whenever I think of benefit concerts, I have this grand vision of massive productions to spread awareness about global warming, or helping refugees fleeing war-torn countries. I just wanted to study overseas, and it felt a little self-serving to say, "Help! I want to study in Germany and do what thousands of other college students are doing. Please give me money." I'm probably trivializing the situation, but that was my logic. So I wrapped up school without realizing that dream. I still want to study in Germany. Maybe pursuing a Master's degree — after all this time — will present me with an opportunity.

Thanks for Coming. You're Welcome Back Anytime.

Arizona State University did a lot to make my student experience enjoyable. I always felt like an integrated part of the student body. I rarely felt restricted in doing what I wanted and everyone on campus was sensitive to and aware of my needs. If I wanted to explore new things, people were willing to give me an opportunity. I even ran for student body president one year. I didn't win, but I did well in the election.

Before leaving home for college, I always had family and the public school system to help me, and I relied heavily on those supports. Going to college and living on my own transformed that completely. The changes I was forced to make gave me a new sense of independence and self-reliance. With those experiences, I came away with knowledge that will last a lifetime.


Tony Jackson has humbly accepted the fact that he is forever bound to Arizona State University. He is currently a first-year Master's student researching attitudes towards disability in German culture and society. In addition, he is teaching Elementary German at the university.

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