“I tell people, my disability gets to introduce me before I ever get to introduce myself, [because I] have a seen disability. And I feel like that’s really unfair... no, I don’t feel like it’s unfair, it’s a shame. Cause I’m so much more than that. I think sometimes people get really uncomfortable, not with the disability, but the fact that I am vulnerability walking around. Like the most vulnerable parts of yourself that terrify you, I’m that.”
Jessica Mae Dixon, May, 2023.
This interview was conducted in partnership with the Disability Network in Flint, MIchigan, where Jessica works as a counselor. She shares her experience living and aging as a woman with Cerebral Palsy.
Laura:
What is your name?
Jessica:
My name? Do you want my full name, like the birth name? My full name is Jessica Mae with an E. Dixon. I'm going to be 42 in two weeks.
Laura:
Uh, your skin looks amazing.
Jessica:
Thank you. Um, my preferred pronouns are she and they. Um, disability. This is the thing I'm most comfortable with sharing. I've been at TDN [The Disability Network] 14 years, so I've been here a while and I forget sometimes when I go out, that people don't normally like talking about disability.
Laura:
Yeah, people aren’t as well versed in it.
Jessica:
And I like give people disabilities. I'm like, they obviously have to have a disability. What's your disability? And they’re like, I don't have a disability. Um, I tell people I double, triple dip in the disability pool. So, I was born with cerebral palsy. And I also identify with a mood disorder. I have depression. I also have anxiety. I have asthma. I manage that with inhalers. I have high blood pressure, but I manage that with medication. I think that's it, not that I'm trying to acquire more. But I also tell people, you know, at some point in your life, you will be a part of the community, whether it's temporary or permanent, right? And aging in itself is a disability, right? So yeah, that makes sense. Um, is there anything else that you want to know about the disability specifically?
Laura:
Cerebral palsy, so that's like from birth, you're born with cerebral palsy, right?
Jessica:
So yeah, it's considered a developmental disability. It affects my motor skills, balance. Specifically for me, on my right side, both upper and lower extremities. I mean, some people with CP can have cognitive impairments, but then there's some people with CP that never walk, they never talk. You know, some people might say, Well, yours is real mild. I've met people that like, this girl told me once she had CP and I was like, bullshit. It took me a minute to kind of find it. It was really, really subtle, but that's the kind of thing I like about disability. It's such a broad spectrum. Right? And I have to remind people sometimes just because I have CP doesn't mean I know everyone with CP.
Laura:
Yes, it doesn't mean like, yeah, I represent everyone with CP either.
Jessica:
I even went on a date with a guy that had CP once, and it was horrible, because he didn't have a lot of disability acceptance. And then he fell while we were on our date and he was so pissed. I was like, okay, dude, I get pissed, too, I get it, but like, you’re with me. And I always have had assistive devices. These are Sheila [pointing to her crutches]. This is Outdoor Sheila because she has an icepick. And this is indoor Sheila, cause when I'm at home, I just use one. Because I think I'm a badass at home. It's a small space and things are where I like it. It's just like, Yeah, I've been using them six years, um… didn't really like them. Some days I don't like them. But I have way more energy when I use them. For end of the day stuff like if I want to go to the park after work, I have energy to do that. They do prevent falls, but I have fallen with them. So they're not 100% I can't say like they say they save me everytime, they don’t. But yeah, that's something I would say new, being 42 and only having used them the last six years. They’re new… I call them accessories, right? Like yeah, I'm an action figure that come with accessories.
Laura:
I found the hashtag babes with mobility aids, and that made me just so happy.
Jessica:
Yeah! I've done an Instagram post with that. Because even when I was thinking about this photography of people disabilities, I do not have many many pictures if at all, if any of me, like my whole body, because I wouldn't say I don't like looking at myself, but seeing myself with my aids. I don't see myself like that. Does that make sense?
Laura:
It does because I also I have like an altered gait and I've used mobility aids and I understand like you see everyone else moving and you think you move like everyone else.
Jessica:
…Exactly the same! Yeah, I remember like one time, I don't know how old I was, I got to see a reflection of myself coming to the sliding doors and I freaked out. Because I was like no wonder people are staring at me or no wonder I get weird looks. I would look like that if I was coming towards somebody.
Laura:
I totally get that, yeah. I've seen videos of me as a child and I’m like how is that person moving?
Jessica:
Or people think you're in pain all the time. I mean, for me at least the more weight I gain the heart, the more pain I'm in. So, that does cause pain, but like, people think I'm suffering or, you know, I'm just having a hard time and it's like, no, dude, I'm just trying to get where I'm going, pay my bills and go get a cheeseburger. I'm just living my life. Right?
Laura:
Yeah, this is just how I move.
Jessica:
Right, this is just how I move
Laura:
Have you always had mobility aids?
Jessica:
Yes, well, no, I mean, I had a walker and a wheelchair for a while. Then I think about second grade, good gold golden, I grew up on a farm, so, very active, I did everything all my siblings did, and then just as I gained weight and got injuries, then like, my mobility started to get a little bit harder. So I mean, if you would have said maybe like, three years ago, I'd be like, I’m gonna get rid of these like, I’m working on it, I don't need them. Now, I’m just like, if I get rid of them, great, if I don’t, oh well.
Laura:
Yes, I know, the acceptance that comes with that.
Jessica:
Yes, it takes some time. And it's funny, because I'm also a licensed counselor. So like, I'm counseling people with disabilities, and most of the people I work with acquire disabilities, which I find it really interesting. I don’t work with a lot of people like myself. And so when they're pissing and moaning about how their body has changed, or what they have to do differently, I'm just, I give more grace than I used to, because now I know what it's like to have your disability evolve and change over long periods of time. But at the end of the day, like, I get to call them on their shit, because I myself have been there and gotten over it. Like, yep, we can set a timer. You can have pity for 5 minutes, and then we're gonna move on. So, it's kind of like, I live in this space, where I see a lot of myself sometimes reflected in the people that I see, but I wouldn't want to be doing anything else. I don't really want to work with the worried-well, I want to work with people that are worried about real life shit, even if I can't solve it.
Laura:
Worried-well, I’ve never heard that, but I like it.
Jessica:
Yeah, that's what my mentor called it because I thought that's what I wanted to do. I thought I wanted to like, hold my own practice, have clients and she's like, a lot of your clients are just gonna be the worried-well, I'm like, I don't think I'm gonna like that.
Laura:
Yeah, you’d be like, what do you have to complain about?
Jessica:
Yeah, your son doesn't get all A's, right?
Laura:
I was also born with my disability, I have Larsen’s Syndrome and it affects my mobility. It's a connective tissue disorder. But I get what you mean, like, you grow up and you're fine. And actually, I had braces and then didn't use any mobility aids for a long time, too. And now I'm just using knee braces, custom shoes, but also realizing, oh, yeah, my disability is changing, as I'm getting older now, in a way I feel kind of affected by it and…
Jessica:
It creates more barriers. And it might not even be like big barriers to people who don't know what it is to live inside your body, but to us, it's another marker, at least in my mind, it's like, oh, yeah, dummy, you have a disability. I don't walk around and think I don't, and I'm not in denial. But a lot of my years, I joke that I'm a recovering Catholic. But like, being in the church and stuff, you know, and like being the youngest person to grow up and get your, you know, healing hands laid on you. Like, you know, God can heal you. And I'm just like, pluck this, I’m out of here.
Laura:
Yeah, like heal me from what?
Jessica:
Yeah, like, you also supposedly created me in this image, so I’m confused. There's kind of a paradox here. But yeah, that was the only time where I felt really gross about my disability was when it was just like, well, you're special, and also, you could be healed at any time. And so it's like, but that doesn't mean I'm special anymore?
Laura:
Yeah and you're like, I'm kind of like, I'm fine with what I got going. Yeah, I understand that.
Jessica:
It was definitely a rough road and not having people similar to me, around, that look like me, or or thought like I did. I mean, I had a few friends in school, but they had significant disabilities, blindness, wheelchair user. And at that time, because I didn't use a lot of devices, I'm like, well, I don't really fit in that group either, right?
Laura:
Do you know many people with CP now?
Jessica:
I do. I do, but that's what's bullshit, I say too about having like developmental disabilities. All the funding and all the studies are on young people, and there isn't as much as like aging with your disability. And so it's hard to find as an adult, like, is this normal? Like, I just like I'm telling you everything, I just got done a few months ago with incontinence, physical therapy for incontinence. And I learned a ton. And I learned it's more than just my CP, there's some other things that are going on. But it's like, once I knew where to look, and the lady helped me look into articles. It was like, oh, this is common for people as they- well, I thought, maybe it's just me cause I’m getting old and I’m a woman. It's that, and it's this, and it's this, and it’s this. But it's like, no one's talking about it. Or there's not a place where I can go find it readily to be like, okay, like, this is how you handle it. This is what you do, type of thing. That gets frustrating sometimes. Not that I don't want kids to have fun doing your research, but I think sometimes adults as we age, with disabilities, kind of get lost in the fold.
Laura:
Absolutely. Yeah. And I think you see that too, like growing up with a disability and like, how much attention and in a way, like, have a plan like the medical world has for you, like, you're gonna do this and this and this and this, and then you turn 18, and it's like, alright, later days.
Jessica:
Yeah, because they lie to you. They told me like, you're you're gonna get your college paid for you're gonna get this, and I didn’t get none of that crap. And that’s okay, I'm never one for a handout, I'm always one for a hand up. If it's available and it makes sense to me and I can help somebody else, but yeah, that’s a total myth. You know, but I remember too, now that I'm older and I have the background and education that I do, and just working as long as I have, I remember like, when I was 10, I think I got an award from the town that I lived in for like, something I didn't even do. Just like showing off. And in that time, I was so excited. I got like, ice cream, my picture taken with the mayor and like, it was so cool. And that was so fucking ableist. I did nothing. It's because I had a disability that people were like, let's give this little girl something.
Laura:
And then it gives you a false idea of the real world too, because you realize as an adult, no one's gonna give a shit.
Jessica:
And I don’t want people to give a shit either. When people come up to me at the grocery store and be like, I just want to say you are doing such a great job. I wanna be like, lady get the fuck out of my way. Let me get my taco fixings and get out. Like I’m not here to be your inspiration. They call that inspiration porn, in the disability community. And then I think like, wow, that hasn't happened a while, and I’ll think we're getting somewhere and then it'll pop up, like it never fails, like you can't get away from it.
Laura:
[Laughing] Constantly inspiring people, despite my efforts not to.
Jessica:
Or, like someone will say, someone said to me yesterday, like, “you look like you're suffering.” And I'm like, you know what I'm suffering from? Inflation. [laughter] I could use a raise.
Laura:
[Laughs] Honestly, yes.
Jessica:
Or you know what else I’m suffering from? My partner doesn’t listen to me. Right? I don’t know if you could talk to them? But yeah, humor works, humor works well.
Laura:
Yeah. That's what someone else was saying earlier. Um, can I ask, do you like notice are more people telling you what an inspiration you are like, now that you're using mobility aids?
Jessica:
I get more pity now, than I did before. Because I just kind of walked around was just like, I don't have time for, you know, like, I'm doing what I'm doing. And now, like, with the aids, and just my body in time. I, you know, it takes me a minute. And people, they tend to be like, you know, let me help you. And it's just like, I'll ask you if I need help. And I tell people, like, people that I've gotten to know, you know cause someone at work came to me and said, you know, I'm just really worried for you, and I just want to help and just try to be kind. I was like, that's a you thing. You're uncomfortable with something that I'm doing just to navigate the space, or whatever. That's how I do things. If you're uncomfortable, that's about you. And it's not my job as a therapist, or as your coworker to help you figure that out. You need to go talk to somebody, to figure that out. Because I tell people, my disability gets to introduce me before I ever get to introduce myself, when you have a seen disability. And I feel like that's really unfair… No, I don't feel like it's unfair, it's a shame. Cause I'm so much more than that. And then I also recognize because you can see the differences that I have, I think sometimes people get really uncomfortable not with a disability, but the fact that I'm vulnerability walking around. Like the most vulnerable parts of yourself that terrify you, I’m that.
Laura:
You're just like out on display in a way.
Jessica:
Correct. But to me, it's just like, I pay my bills. I'm getting things I like. You know?
Laura:
Yeah, it's all a part of living.
Jessica:
It's all part of living. I wouldn't know any different. You know and like, you know, somebody said, if there was a pill, would you take it? When I was 15, I would have said yes. Now, go to the next person.
Laura:
I hear ya. I remember talking to people about that, and being like no, I think I'm fine how I am. I don't need to change anything.
Jessica:
It's not like we're fine. I mean, everybody's losing their shit. Some people just tuck it in better than other people.
Laura:
That's true. And this does give you a little more just, I don't know, stamina or like humor, just having a disability.
Jessica:
It does, it does. You have to or else I think society gets the best of you.
Laura:
Yeah, that's true, or else you’d just cry every day.
Jessica:
Which, I do that too [laughs].
Laura:
If I’m not laughin’, I’m cryin’.
Jessica:
Yes, it's cathartic. It's cathartic. Um, what do I do for fun? Um, I don't know, I spend a lot of time with my dog, it's a pug. I like to read. I just like spending time with people. I like to eat. I think if somebody asked me, what do you do for fun and I’d be like, I eat? I like spending time with people, just people in general. I don't really have to know them that well, either. Obviously. I just like meeting people, connecting with people, understanding people. You know, paying attention to you know, just how people navigate life.
Laura:
Yeah, I get that people are interesting. That's why I like doing this.
Jessica:
I bet! Yeah, but I don't do anything too wild.
Laura:
Do you do any like crafting? Do you have any hobbies?
Jessica:
I guess besides reading, not really I'll do crafts. I write poetry. But like, I don't share it with people or anything. Yeah, just like something private that I do. I like foreign films. I like thrifting. COVID gave me a really bad thrifting relationship. But you know, I like it. You know, and I try to play by the rules. Like if I thrift one thing, then one thing has to come out. I can’t keep collecting. I do have like 200 books in my apartment though. So, like books don't have a rule.
Laura:
No, they don't. Yeah, I'm in a book club and a lot of our members, I'm too cheap to buy a book, so just do everything at the library. But yeah, they just got books on books on books.
Jessica:
Yep. Yeah. And that's what they're there for. That's what they're there for.
Laura:
They're beautiful to look at. And do you remember in the pandemic, when you're like, oh my God, is the electricity gonna go out? Am I gonna be someone who finally reads all these books?
Jessica:
[Reading the prompt] what motivates or inspires me? Um, my curiosity.
Laura:
Oh, that's a good one. Yeah, that’s probably is what gets you to like being around people too.
Jessica:
Yep, my thirst for knowledge and my curiosity, I think are what motivates me and inspires me at the same time.
Laura:
That's great. That's such like a gift to be born with too.
Jessica:
And I'm a Gemini, so it's pretty much like it's all wrapped up in there.
[Reading the prompt] What change would you like to see for people disabled people in the future? That’s a really good question. I think for people to recognize we all have something. Not such a divide, I guess in between, like the us and them. Right, like, well, you're part of this community now. It's like, why can't we just be part of the human condition? That's what I would like to see is more people just recognizing the distance between me and Brian [gestures to Brian] is shorter than you think.
Laura:
Yeah, like disability is a construct. It's really all it is.
Jessica:
It is, and it comes in many flavors. I'm just a really spicy flavor. [Laughter] And then there’s other people who are just like vanilla. And, you know, I think two people have this idea that disability has to be seen. It has to be tragic. It has to be, you know, very charity driven. And the reality is, is like no, like, disability is the human experience.
Laura:
So well said. Like drop the mic right there. Because it is the human experience. Thank you.