Kiley Griggs and The College Quest

For many people, attending college is viewed as a rite of passage. From TV shows, to movies, to books, and everything in between, we're inundated with examples of "the college experience." These things try to teach us what we should expect out of our experiences with higher education. It can lead people to believe that there is a "right" or "wrong" way to attend college, which absolutely isn't the case. Who we don't often see are individuals who have trouble accessing higher education. Who we really don't see are the students who attend higher education but, for several reasons, are unable to have that "typical" college experience. In particular, disabled students' access to higher education can be impacted by accessibility needs. Kiley Griggs, who recently graduated from an accelerated STEM-focused high school program, has found herself at these crossroads. We don't often talk about what happens when disabled children grow up, become adults, and want to have the same experiences as their non-disabled peers. What accessibility barriers potentially prevent disabled students from having equal access to resources and activities, such as living in a dormitory, joining a sorority or fraternity, attending Homecoming, or even dating? I sat down with Kiley to learn a bit about her experiences applying to college. We spoke about her past, what she's currently gearing up for, and the pushback that is actively preventing her from participating in higher education, in the way she wants to. Her story is a powerful one, offering us insight into extremely important discussions of disability's relationship with independence, autonomy, and equality.

Kiley is a bright young woman who, I'd argue, is wise beyond her years. Before graduating, she was the only wheelchair user enrolled in Wendell Krinn Technical High School's cybersecurity program. In fact, at the school, Kiley was the only wheelchair user to ever be fully mainstreamed. Already equipped with a few cybersecurity certifications, she graduated with both her high school diploma and her Associate of Arts (AA) degree. To say the least, that's an impressive goal for anybody to accomplish.

Glimpsing into the future, Kiley is considering several options. When I asked about her academic interests, she said, "I like a lot of different things! I like getting my hands dirty in white hat hacking. I like talking to people and interfacing with [them]. I like troubleshooting things. I like making little [creative] projects... So, I don't really know where I'm going to go. Just somewhere in the IT headspace." Currently, she's focusing on programs that focus on the topics of AI, business, and robotics. Her sights are set on a potential Master's and/or law degree.

It goes without saying that Kiley has a bright future before her. However, I have to admit: after speaking about her experiences regarding accessibility, I felt a sour taste begin to creep into my mouth. As Kylie begins to tell me about the limitations that she's experiencing, regarding physical accessibility, I have a familiar, sinking feeling. It reminded me of the time I'd spent in Graduate School and the unnecessary amount of difficulty I experienced, regarding accessibility.

Here's the reality: most college students, unless they are disabled, don't have to worry about certain limitations. Here, I'm particularly referring to the ability to live in a university dorm and independently attend class. Only disabled students have to grapple with the worry of finding a caregiver, as well as needing accessibility accommodations, both within and outside of the classroom. Systems like Florida Medicaid or the MedWaiver are intended to provide healthcare and financial assistance for disabled people; however, they also add a lot of restrictions that most are unaware of. Wouldn't you know it? Those restrictions have a huge impact on disabled people, who may want to venture out of state, to attend the college or university of their dreams. Kiley told me, "The way our system is set up, the way our Medicaid is set up, if I leave the state, I lose Medicaid. Even though my teachers are like, 'You could go to Columbia or something!' I'm like, 'No.' [Then they say,] 'But it would be so good for you.' I'm like, 'But I can't do that.'" For Kiley to requalify for financial resources, such as Medicaid, Social Security, and the MedWaiver, she'd have to live in a new state, for a set amount of time. During that time, she'd have no assistance with medically-related expenses. For a disabled person, especially for those of us who have to rely on mobility equipment like power and manual wheelchairs, that waiting period becomes a potential death sentence. To me, all of these factors sound a little too similar to the concept of "Separate but equal." In case you are unfamiliar, that practice is supposed to be illegal. I digress.

So, what does any of this mean for Kiley, as well as her disabled peers? For one, it actively prevents them from having the same kinds of opportunities as non-disabled university students. In fact, it aims to prevent them from becoming university students, at all.

Why is any of this important? To be blunt, I believe that Kylie's struggles are an active infringement upon her rights. When I asked Kylie why it is so important for her to live on her own, she offered, "I just want the independence. For the majority of my youth, I went to camp. Camp is freedom! I get to make my own decisions. I get to be my own human. My parents are really good about stepping back... but they're still my parents. I want freedom. If this makes any sense... [experiencing] that kind of freedom makes you yearn for it even more. I want the independence of living on my own. I want to possibly join a sorority. I want that college experience. I want the fun stuff, on top of the academic stuff."

As I mentioned, Kiley has a few kinds of accessibility needs. For starters, she'll need accommodations both inside and outside the classroom. While some of these accommodations may overlap, a number of them don't. Most people assume that colleges or universities pay for one-on-one aids for disabled students. Actually, they don't. Regarding accessibility accommodations, universities will pay for a scribe, better known as a notetaker. Scribes are a fantastic resource for students like Kiley, who don't have the ability to write by hand. These scribes are only paid for the time that they spend in your class, with you. So, outside of class time, these individuals probably won't be available to help Kiley with other, accessibility needs.

Additionally, since she doesn't have the ability to write and may type slowly on a computer, Kiley will need extended time for test taking. As it is, she's already had to deal with requesting accommodations for taking certification exams. I asked Kiley what it was like to those kinds of tests, to which she replied, "In order for a disabled person to take a certification exam, [and receive accommodations for test taking], they may have to wait for months in advance, apply, wait for [the application] to go through, then it gets denied and we have to jump through hoops. Then, other companies are like, 'Boom! You're approved!' Meanwhile, other people... just have to click the button, click what day they want to take the test, click 'Go,' and they're registered. [Disabled people] have to jump through all these things and get like a voucher code." To Kiley's point, requesting accommodations adds an additional layer of difficulty that disabled test takers must endure, while non-disabled test takers simply need to sign up for the exam. Additionally, if you are disabled and need testing accommodations, a lot of certification or entry exams require disabled students to have a note from a doctor, validating the student's disabilities and limitations. I'm unsure of a more efficient method for speeding up this process; however, as somebody who needed accommodations to take the GRE, in order to attend graduate school, I can tell you that this process may be tedious, lengthy, and stressful.

For individuals like Kiley and myself, even though we need accommodations, requesting them can sometimes feel overwhelming. She relayed to me, "I have a hard time invoking my extended time and asking for extensions, on assignments. Because, in my head, nobody made me feel this way, but it feels like a cop-out or excuse. I know it's not an excuse. I know I need it... I know I work harder but, in my brain, my perfectionist, little gifted brain, it's like, 'Oh! You're giving up!'" As Kiley demonstrates, for disabled students, our differences can sometimes leave us feeling isolated or guilty. Both of us hope that this blog post will help other disabled people to recognize these feelings in themselves, let them know that they're not alone, and that  accessing accessibility accommodations is our civil right.

So, what about outside of the classroom? Well, those services would need to be provided by a private caregiver. Kiley will either have to pay for that service, out of pocket, or through another entity like the MedWaiver. If she were to go out of state, as I previously mentioned, she'd be without any disability-focused resources for a period of time. That period differs, depending on the state. So, if Kiley were to try and attend an out-of-state university, she'd have no assistance to help pay for a caregiver, at all, for a set period of time. This could be anywhere from a couple months to upwards of a year. Could you imagine not being able to use the restroom, cook, take a shower, or get dressed, for a year?! It's irrational, ridiculous, and completely unrealistic.

Regarding her life post-graduation, I asked Kylie to tell me why employers should make a more concerted effort to hire disabled workers. She said, "In my case: work ethic. I will get a task done, [through] perseverance and grit. People talk these days about how, 'Oh, Gen. Z has no grit. They're iPad kids... but I have the perseverance. I have the grit. I have the things that some other [people] don't have. I've had to fight for almost everything I have, or everything I wanted to get. In the end, I mean, it stunk to go through, obviously. But [that] will make me a good employee." Kiley's answer rang in my ears for some time, because I've had to fight against the same ideas. Especially regarding the current state of Disability Rights, where average people believe that disabled people want to do nothing, then receive a check in the mail from Social Security (which, I have to point out, is very little money), Kylie's words show that this observation is completely false. Disabled people want to contribute to society. Want to know why we don't see more disabled people, in higher-paying roles? Because it's next to impossible for us to achieve the necessary education, experience, and testing to do so.

The point of Kiley's story is to show people the parts about living, as a disabled person, which people don't typically hear about. Kiley offered, "I'm happy doing the work that I do. I'm happy representing the organizations I represent. They've done a lot for me... I'm happy to be happy, and to have my picture on their websites, [which show me] being happy. But that's not the full story." By being as successful as we are, to most people, disabled people make our lives look easier than they are. The transfers, the mobility devices, the orthotics, the prosthetics, and the well-behaved service animals... all of these resources seem as if they simply appear, out of thin air. In reality, acquiring these vital resources takes a lot of advocating, planning, training, and even maintenance. So, what do all of these resources have in common? They cost money, and a bunch of it, too.

Concluding our interview, I asked Kylie: "If there was one thing you want people to learn from your experiences, what would that be?" Her reply left chills down my spine. She offered, "I want them to know that this is the voice behind the scenes. We keep talking about, 'You see the happy kid.' Or you see all the cool stuff we get to do, and I love it, but there's also stuff we have to fight for. We fight, and we fight, and it gets exhausting. If an able-bodied person reads this, let them see that. If a disabled person reads this, which I hope they do, there is always a way around the thing, the obstacle, the barrier. Whatever thing, there's always a way. That way might require help, but it's OK to get help... Advocate for yourself! If you're planning to go to college, I will try now to make a way for you. Hopefully, I succeed."

Author:
Kyle Romano