I became a quadriplegic at the fairly young age of 20. I was attending community college at the time and already uncertain as to “what I wanted to be when I grew up.” Although I have met quite a few people who jumped back into school and work life only months after their injury, I was not one of those people. It took me about two years to begin thinking seriously about returning to school and making a life for myself. Also, I was scared, and unsure of how to get the help I would need if I were to return to school. I was unaware that there were laws in place to ensure that I had equal access to education as my fellow students.
Know Your Rights; An Extremely Brief Overview
Becoming knowledgeable of the specific laws developed to provide rights for persons with disabilities can provide for some pretty dry reading. However, being in the know will get one much farther than choosing ignorant bliss when attempting to navigate our educational system. So, I’m going to try and break it down simply for you. The Civil Rights Act of 1964 made discrimination based on race, religion, sex, national origin, and other characteristics illegal. The passing of the Americans with Disabilities Act (ADA) of 1990 (42 U.S.C. § 12101) affords protections against discrimination to Americans with disabilities. The ADA provides that no individual with a verified disability can be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance (Government Publishing Office, 2017).
In short, universities are required to reasonably accommodate your needs, so you can achieve your goal of attending and graduating from any institution receiving funding by the federal government (which is about 99% of all universities in the United States).
By the way, I hope readers notice that the ADA was only recently passed in 1990. It is alarming to know that civil rights for persons with disabilities have only been in place for 28 years! That means for approximately the first 2/3 of Stephen Hawking’s life, based on the standards of the United States at the time, he was afforded meager access to places and technologies to assist him; however, he didn’t have a basic right to this access
Where Do You Start?
You will need to initiate the accommodation process and follow through with phone calls and paperwork yourself. Only persons who disclose their disability to a university are entitled to accommodations, yet students are not required to disclose their disability to other students (United States Department of Labor, 2017). Having a new disability is earth shaking in itself, let alone undertaking the daunting challenge of returning to school. Have no fear friend, most universities have this process outlined online on the specific web page of the office for specialized student services. I would recommend making an appointment to speak or meet with a counselor from this office, this will help the process to move more smoothly. Ultimately, you’ll need to validate your medical condition and have a doctor recommend specific accommodations. There are usually downloadable forms on the university’s website for this, many of which indicate the accommodations available at the university. Many universities may require you to do this once a year. It is tedious, but very worth the accommodations gained.
What Will You Study as a Differently Abled Person?
This was a very challenging question for me to answer. My passions pre-quadriplegia were mostly physical, so I was at a place where I was trying to find new passions while also learning how to navigate daily activities. I couldn’t do very many basic life skills independently such as use the restroom, get dressed, get out of bed, or push my wheelchair. Considering I was still trying to remaster skills that I had learned by age seven, I had a very hard time choosing a direction in school, so I decided to start basic. My very first goal was to get my Associates (AA) degree and fulfill all needed prerequisites to apply for general education (non-major specific) admission to all UC colleges in California. Most colleges and universities have a career counseling office that can offer questioning students advice and direction. For example, at my community college there was a career exploration class where students attend a few sessions and take tests that assess their strengths, skills, and interests. After receiving the results, a person can then meet with a career counselor to map out the specific educational requirements, and how to achieve them to graduate with a degree in one’s chosen career field.
There are also additional logistics that need to be considered when returning to school after a disabling life event. I mentioned above that I was scared to attend school, but that is a slight understatement. I was terrified. I was very self-conscious of my physical limitations and needing help. The following are a few concerns I had and how I worked through them:
How was I going to get from class to class?
So, once I registered for my classes I actually went to campus, found where my classes were being held, and figured out an accessible path from one to another. What is awesome is that universities must provide mobility assistance around campus. For me this sometimes meant having a person meet me at the end of one class and push me to my next class. If my classes were on opposite ends of campus, the university usually utilized an accessible vehicle to accomplish this. The need to utilize campus mobility assistance is unique to each individual. Sometimes I utilized the service, sometimes I pushed myself; however, university mobility services require scheduling and you will need to inquire about the specific details at your university.
Additionally, sometimes buildings are antiquated, and you will need to figure out round about ways to access them. If it is impossible for you to access a classroom, the university will change its location. I had one class on the second floor of a building without an elevator. It did, however, have a stair lift. This lift required a utility key and an additional person to operate it. I had to schedule ascending and descending the staircase for each class session. A person would meet me at the staircase at the arranged time, unfold the lift which would cause a buildup of student traffic (oh goody, now everyone was watching!), help me on and off the platform, and operate the lift switches. So many people had to wait while I used this lift, that I began waving at the audience as if I was on a parade float. The cluster mess was quite comical, and I tried to have a good sense of humor about the whole situation; yet, there were times where it felt dehumanizing. I know there will be people who feel that I should be grateful for such access, and I am, I just would have liked an accommodation that didn’t put my disability on display as much. I am not telling this story to discourage anyone, but sometimes attention to our diverse needs must be called forth until infrastructure is designed for universal use.
What if I needed to use the restroom?
I was so alert of my new bathroom needs that when I would plan my path from class to class I would also examine my restroom options and locations. I need help entering and exiting a restroom (doors are heavy!), so I also noted the traffic of each restroom (aka the degree of help available from other students). I intentionally planned my class schedule so that I would have time for planned restroom breaks. If my class was under an hour in length, I felt I could sit through two classes before scheduling a break of some sort. If my classes were over an hour, I would schedule a break in between classes to use the restroom. Obviously, this will vary from person to person, depending on your level of mobility and restroom needs, but it is something to consider when scheduling on campus classes. Additionally, universities are not required to assist persons with personal care needs; however, when assisting with mobility from class to class, the university assistant can open the restroom door for you.
How am I going to take notes?
My new hands definitely provided for some creative note taking techniques. Luckily, colleges and universities are required to provide a notetaker in class for you. Sometimes, the university will have the teacher make an announcement that an anonymous student in the class needs a notetaker and ask for volunteers. Depending on your level of mobility, this announcement may not be so anonymous, as was the case for me. Sometimes people volunteered and sometimes they didn’t. If no one volunteers, then the university will supply someone to take notes for you, usually another university student needing to make some extra money. The benefits of having an in-class volunteer is two-fold, the student volunteering will be supplied free paper for the semester to take notes on (you get the carbon copy), and your notes will be more relevant than notes taken from someone not invested in that class.
In addition to receiving someone else’s notes, I also figured out a way to take my own. Being a complete C 5/6 quadriplegic, I have zero use of my hands and minimal use of my wrist. I do not have the grip strength or the ability to apply the proper pressure to effectively use a standard pen. However, I am a kinesthetic learner and need to take my own notes or I will space out during a lecture. I figured out that a marker that bleeds onto the page (but not through) and that is thick in diameter, as to not slip out of my fingers while I write, helped me to take my own notes. So, Mr. Sketch markers became a school supply staple for me, my notes smelled delicious and were very colorful too! Currently, if I were to take class notes I would use a touch screen device, but I would still need my trusty Mr. Sketch markers if I were taking a math class.
How am I going to function in the classroom?
Taking notes is one aspect, but I had to figure out how I was going to manage my school items in such a way that I could set myself up to execute note taking. My arm strength and balance are minimum, so this process evolved over a period of time that included lots of trial and error. Although each classroom and desk situation are unique, I had a basic standard procedure that worked for most of my classes. I carried one binder on my lap that had dividing tabs for each class that day. I used a different binder for different days and I stored the marker of the day within the 3 rings of the binder. I like to use binders that zip closed around the edges, so I wouldn’t lose handouts, returned papers, markers, etc. when walking around campus. I also added an extra ring to the zipper, so I could open the binder by looping my thumb through the ring. If I needed my text book I would usually carry it on my lap, on top of the binder (things tend to slip the other way around). Sometimes I could carry two text books, and sometimes I needed to carry one in my backpack and ask my note taker or mobility assistant taking me to class to switch them for me.
Since universities are also required to provide seating/desk accommodations (you need to arrange for this ahead of time, for every class, each semester), there was usually a designated table at the front or back of the room for me. I would roll up just close enough to lift one edge of my book, which was usually heavy as all heck, on the table, then I would push the book the rest of the way up. I did this with my binder as well. I would then arrange all these items on my desk to best suit my needs. Remember, there is only a few minutes between classes, so I sometimes missed the very beginning of lectures until I built up my skills and speed. Sometimes people offered to help, and mostly I politely declined. It wasn’t until I was fully confident in my capabilities of performing these tasks independently that I began accepting help. Ironically, it was at this point that offers for help began to diminish. I guess I became good enough that I didn’t look like I needed much help at all!
How am I going to take tests?
If you require testing accommodations that cannot be executed in the classroom without disrupting other students, such as extra time or a note taker to dictate answers to, then you will have to arrange with your professor and the student services office to take the test at a different location. Each university has their own protocol for providing testing accommodations. Once I got into the swing of how I was able to receive accommodations, I began taking initiative and emailing my professors before the first day of class, alerting them of my presence, my needs, and the university’s approval for accommodations. I would get my syllabi and sign up for test rooms and accommodations as soon as I could. If test dates were not indicated on the syllabus, I would ask the professor. It is important to have as many kinks worked out as possible before the first day of each class, so you can direct your attention to learning and succeeding, rather than access and accommodations.
There will be some challenging, and annoying, things you will not be able to avoid. Most commonly, ignorant idiots. Remember, it has only been less than 30 years since persons with disabilities were given the legal right to any access to the public. Therefore, you will run into people who will be astounded that you even left the house -insert eye roll here. People will pet your head, stoop down to speak to you as if you are a child, push your chair without asking, and talk to your assistant instead of asking you questions directly. People will also make a plethora of backhanded compliments, such as, “You’re too good looking to be in a wheelchair,” as if disability discriminates. Or, “Good for you,” when you perform a basic life task such as push up a ramp independently. Let’s not fool ourselves, the collective subconscious of society’s implicit and explicit mental constructs towards persons with disabilities has not had much time to drastically evolve.
However, the more we advocate for ourselves and the more visible we become, the more we will be seen and heard and move closer to eradicating our culture of the invisible institutional barriers that perpetuate these demeaning experiences (Payne, 2014). We must expose these oppressive behaviors in order to bring awareness. Over the years I have developed some responses to persons who just don’t get it. If I find someone staring at me, I stare back and refuse to break eye contact first. If someone pushes my chair without permission I say, “Excuse me!” in a very loud voice, and usually I must repeat it until the person realizes I’m actually speaking to them. I then state, “Please do not touch my chair unless you have asked, and I say yes.” Many people will try to explain that they are simply trying to help. You can then let them know that you’re not a child in a stroller, and that they probably wouldn’t appreciate it if a stranger approached them, grabbed their hand, and drug them where the stranger thought they should go. It is impossible to predict every act of dehumanizing ignorant ideocracy that you may encounter, regardless of how well the intentions are of others, so I say have fun with it! Come up with your own quirky responses to these situations that leave you feeling empowered. It is important for you to know that you are capable and worthy. Also know that YOU are your best advocate.
Considering the fact that one’s ability to achieve a higher educational degree directly correlates with one’s ability to obtain adequate and sustainable employment, it is no surprise that the best way for a vulnerable population to rise above their circumstances and better integrate with society is through education (National Center for Education Statistics, 2016). Now, despite the list of challenges above, I benefited immensely by returning to school, in addition to becoming educated. I learned how to utilize public transportation, which gave me a newfound independence and expanded my social opportunities. Returning to school gave me a social outlet outside my home which allowed me to rebuild my network of friends as a differently abled being (it is astounding how many people filter themselves out of your life after a major illness or injury……. but that’s another writing).
Physically navigating a college campus built up my wheelchair mobility skills and I figured out how to better propel myself in unknown situations. I also became more comfortable with asking strangers for help, which was a huge hurdle for me to overcome (yes, there were times that I needed a push up a ramp, but it is my choice if, when, and how I receive help). I discovered that the majority of people I ask for help are really nice and glad to help! Lastly, returning to school gave me a feeling of purpose and accomplishment. I had goals and direction, which felt better than the limbo I was floating in. I continued physical therapy after my injury, and I still continue to put energy toward physically strengthening myself on a routine basis; yet, it got to a point where I needed to enrich my recovery by strengthening my mind and person in order to feel more whole.
If leaving your house on a regular basis is a major obstacle for you, have no fear! Many universities, including the prestigious ones, offer a ton of online educational programs, certificates, and degrees. Additionally, it doesn’t state on your diploma that you attended school online. Just make sure that the institution and program you are looking into is nationally accredited. Also, you can still receive similar accommodations online as on-site education, such as extended time on tests, textbooks in audio format, computer software that enables one to use their voice to type, etc.. The process to access these accommodations is a similar process as on campus education, and will be outlined on the university’s specialized student services web page.
There are numerous websites that list many scholarship opportunities for diversely abled persons. The search and application process for scholarships that specifically apply to each individual can be time consuming, yet financially rewarding. One major source of educational funding from the government comes from the Department of Rehabilitation (DOR). Similar to receiving accommodations at a university, there is a standard order of procedure that needs to be followed in order to receive DOR services, which includes verification of needs from a licensed physician. Each state’s DOR may operate slightly differently, but ultimately the DOR financially assists with tuition, books, housing, and potentially necessary school supplies such as a computer, voice activated software, etc.. What I like about the DOR is that many times if a person can get a doctor to recommend an accommodation, such as a touch screen device for writing papers, the DOR will help you access most requested accommodations.
You Can Do it, Too!
School is not always the best path for persons wanting to reintegrate into society after a life changing injury or illness, but it was the right path for me and I am happy that I chose it. Returning to school has led me to a very fulfilling life where I work in social work, specializing in helping others move beyond their perceived limitations. I hope that my experience, and the lessons I learned, will help and inspire anyone who is considering returning to school. Anything is possible, sometimes it just takes a little thinking outside the box to overcome some challenges.
Government Publishing Office. (2017). Title 42—The public health and welfare. Retrieved from https://www.gpo.gov/fdsys/pkg/USCODE-2013-title42/pdf/USCODE-2013-title42-chap126.pdf
National Center for Education Statistics. (2016). Employment and unemployment rates by educational attainment. Retrieved from https://nces.ed.gov/programs/coe/indicator_cbc.asp
Payne, M. (2014). Feminist Practice. In Modern Social Work Theory (4th ed., pp. 348-372). Chicago, IL: Lyceum.
United States Department of Labor. (2017). The why, when, what, and how of disclosure in an academic setting, after high school. Retrieved from https://www.dol.gov/odep/pubs/fact/wwwh.htm