A spinal cord injury (SCI) is a temporary or permanent change in motor, sensory, or autonomic functioning as a result of injury to a spinal cord or nerves.
There are currently some 294,000 people living with an SCI in the United States alone, and the most common causes of SCIs are motor vehicle accidents, falls, acts of violence (ex. gunshot wounds), sports or recreational activities, and medical or surgical incidents.
With September being Spinal Cord Injury Awareness Month, I talked with my best friend, Joci Scott, about her experience living with an SCI and about her perspective on and experience with ableism.
I met Joci in the fall of our freshman year. We became friends through our roles in Off the Lake Productions' rendition of "The Hunchback of Notre Dame," and we've been close ever since. Joci is a senior psychology major at Ohio State, and she is planning to continue her studies of psychology in graduate school. On campus she is involved in Off the Lake Productions and Buckeyethon, she was named Ms. Wheelchair Northern USA 2020, and she has a history of involvement with Weathervane Community Theatre and ETC All-American Youth Show Choir back in her hometown of Akron.
Could you tell me a bit about your experience having a spinal cord injury and what some of the major impacts were?
I was in a small plane crash in July of 2019 that resulted in my spinal cord injury. I'm technically paralyzed from the hips down. The impact of that, obviously, is I can't move my legs. But it's more than that! It's the loss of bowel and bladder function, sexual function is affected, and some people see their autonomic nervous system affected. (So, for instance, they get really affected by changes in temperature.)
As far as lifestyle changes go, I had to re-learn how to live my life in a wheelchair. Learning how to get out of bed, get out of the car, drive, just do everything that you would think of doing in your normal life — I had to relearn how to do that from a wheelchair.
With social justice being at the forefront in the last few months, there has been a lot more attention on ableism and its different manifestations in society than there has been in the past.
Ableism refers to the discrimination of and social prejudice against people with disabilities.
Similar to racism and sexism, ableism classifies an entire community of people as being inferior because of their disability, and this can manifest itself in harmful stereotypes, misconceptions, generalizations, and inaccessibility throughout different facets of society.
Do you remember the first time you realized someone/something around you was ableist?
I didn't really know much about ableism until a few months ago. I think the first time I really realized it was a couple of months after I came home from the hospital. I went to get an MRI just to check up, and so I was getting on and off the table, and I had this MRI technician who was just not trained in how to deal with someone with mobility issues.
You could just tell he was really not knowledgeable about it — so I'm on this table lying down, I got my MRI, and then I was on this rolling cot, and I had to get down into my wheelchair, and it was a pretty steep distance between the cot and the chair. I wanted to just do my transfer like I had learned in rehab even though it was a really tough distance. It was just like the car, because my mom has an SUV. But this guy was like no, let me just do it for you. So he just grabbed me without my permission and just put me in my chair. I guess one aspect of ableism is able bodies thinking that they can help, but they end up doing something worse or offending the disabled person.
I think the most important point in this is just to listen to the person that you are trying to offer your help to. They know what they need, they live their life 100% of the time. You are just a stranger or somebody who's not around them all the time, so just listen to them if they agree to let you help.
What are some of the most common displays of ableism that you see or experience?
Ableism has a lot of parts. It is an overarching concept of prejudice against disabled people. But there are a lot of pieces to it. One thing I've really noticed is inaccessibility in public locations. Especially with coronavirus because buildings have to be set up so everybody comes in a certain way and leaves in a different exit. I'll notice that the accessible entrance is way far away from where I need to be.
Yeah, like at Curl [Market].
Yes, that's exactly what I'm talking about. It makes an extra obstacle for people, and obviously, there's a step to get in some public buildings, and the elevator is broken. So like one time when we went out to eat the elevator was broken, so I couldn't get into the restaurant and we had to go somewhere else. Stuff like that happens.
Abuse of accessible spots, too. I noticed that yesterday — I was at Polaris — I saw three people using accessible spots without a handicap placard, and I was like, why do you think that you can just park there? Like why?
What are some common phrases that you have noticed are unintentionally ableist? Or common messages that are ableist?
A common one that I hear a lot is "You're so inspiring," and stuff like that. My situation is a little different because I'm so new, so I kind of understand why people are so impressed with how I'm handling the transition. But when people say I'm so inspiring for just being able to do a wheelie, or I somehow maneuver around something that isn't set up for me, that's just my life. What else would I do? And for people who were born with their disability, they don't know anything else.
Can you tell me a bit about internalized ableism? Is it something you've worked through? What would you say to others who are struggling to work through internal ableism?
I definitely had to deal with that a lot, especially at the beginning because I just didn't know anything about if I could have a good quality of life despite this condition. I really was like, "I don't want to live the rest of my life in a wheelchair, that's just horrible," because that's all society told me about people in wheelchairs. Eventually, as I became more exposed to people like the Rollettes and Ali Stroker, and people who are still so successful despite what they're having to overcome, that shifted.
But I still have to deal with that. Especially thinking about my future wedding. Sometimes I get a little emotional thinking about not being able to dance with my dad at my wedding, or those little things. But I'll just do my thing — do what I need to do for me.
I think what I would say to somebody who's dealing with this that it's impossible to not feel those feelings, especially after a traumatic injury. Your whole world changes, but don't remove yourself from the community. Don't not listen to people who have been through what you're going through. Follow people on Instagram, join support groups online, try to see what other people are doing, and find something that's good for your soul.
What are some ways that we can shift the discourse around disability, or more specifically SCIs, to place more focus on the person rather than the disability?
First and foremost, I think we need to remember that no matter what condition a person is living with, they are a human being first. We have the same biological makeup that makes us the same — we all need to remember that. Secondly, always ask before you try to do something that you think will help. Like I said before, just asking what they need. Because everybody needs something different. Ambulatory wheelchair users exist, there are people with spinal cord injuries that can walk…just always ask before acting.
I've been thinking a little bit about this as I've been reading my books for SCI Awareness Month. I read "Me Before You," the popular book where the love interest has an SCI and the girl is hired to be his caretaker. Just the way that all the characters described him at first was really aggravating. They were like "can he even talk? Do you need to learn sign language?" The amount of ignorance! And this is real life, too. People do not know how a spinal cord injury doesn't usually affect your brain, so I think just having more of a general knowledge base, and seeing them as people. The protagonist in that book didn't really see him as a person until she started falling in love with him. And she was saying, "our relationship is so unconventional!" — it's unconventional because you work for him, it's not unconventional because he's disabled.
Can you tell us a little about your experience working with Joseph and the Amazing Technicolor Dreamcoat with Weathervane Playhouse?
Yeah, I was really worried at first! I accepted the role two weeks after I got home from the hospital, so I was still spending most of my days in bed and just trying to recover, and I was learning how to move in the chair in an efficient and smooth way. So I didn't know how we're were going to make it work, but the choreographer was my dance teacher for years and she was determined.
I had a couple of practice sessions with her at her house and she did a lot of research, so we just did a lot of experimenting to see what works. I worked with my dance partner, Judah, a lot. As far as the set goes, they built a ramp for me so I could get on to the back platform and made sure that someone would always be able to go up and down with me to make sure that I didn't roll off. It was such an emotional outlet for me, so having the stamina for doing like five shows a week two hours a day wasn't as hard for me because I just loved being there.
The only thing I wish is that I've gotten to the point where I'm so much more mobile, since then, and I've been taking dance classes from the Rollettes, and I wish I could just go back and do it again because I feel like I could be so much better.
Is there anything else that you want to talk about?
Going back to the question of how to treat people — I think this happens especially with people with higher injuries who are paralyzed from the neck down. People address their caretakers instead of addressing them, but you CAN talk to them. If it doesn't work out, or that the person with a disability can't understand you, then the caretaker will step in. But they automatically assume that you won't be able to communicate with them.
The bottom line is, people with disabilities are human beings and they deserve all of the same rights, privileges, and respect as any non-disabled person has.
We can begin to push back against ableism by listening to disabled people's voices and stories, respecting their boundaries and asking before acting, and actively being aware of the world around us and making an effort to stay educated on how to be an ally to the disabled community.