Tell me about your disabilities.
My primary disability can either be classified as physical or neurological. It is called Cerebral Palsy or CP for short. Which is caused by brain injury due to a lack of oxygen that I was deprived at birth due to my Mothers drug use. Basically it affects all four of my limbs because there is a specific type that I have. Its called Spastic Quadriplegia Cerebral Palsy. So quad means four, again all four my limbs, but spastic means that I have involuntary movement in all of my limbs. So if you startle me on purpose, my body will do this quick jumping thing. Or if I’m really excited or mad my legs and arms will both extend. I have tightness, very much so, in my legs and arms. Don’t mistake quad as me saying I’m paralyzed; I’m not. I can use my forearm crutches for short distances especially when it comes to being around the house. And I use my power wheel chair for transporting me long distances. When I was a child I was diagnosed with asthma, as of right now my primary caretaker thinks I have grown out of it but I’m not so convinced. I also have a learning disability when it comes to reading and math. So it is hard for me to grasp complex math skills and when it comes to reading; I can read but I read very slowly. If it is a complex word sometimes I have a hard time sounding things out. I have somewhat of a hard time defining the meaning of certain things so I like having my phone to look things up.
How have your disabilities impacted your self-esteem throughout life?
My physical disability has impacted me throughout my life in a way where I would have to say, as I’ve gotten older, I had to gain confidence. I always thought that, to me, I looked great and felt great physically. But I hated when people would stare at me. I couldn’t say for sure but it wasn’t a good stare. Like there is something wrong with this person. So I’ve always grown up, as a child especially, wanting to hide my leg braces. I wear these leg braces which are these really tall, hard, thick pieces of plastic where you put them on the back of your leg and your ankles to keep your feet in place. Once I put the braces on they are supposed to help me walk better, which they do. So I’ve never wanted to show off my legs when it came to wearing shorts that are really high up, you know the fitted ones. I am the same way with capris. Now that I’m an adult I still don’t like to wear my whole entire long brace because there are my shorter braces I can wear. Where they’re just to my ankles as opposed to the back of my leg. So I’ll would prefer to wear my shorter braces that go up to my ankles just so that they’re not as visible. I’ve noticed I have more confidence that way. If I were my ankle braces; people are more so looking at my sexy thighs and my big legs as opposed to, “What are these four objects around her legs?” As a child I didn’t want to show them at all. Now as an adult? I dare someone to say anything about my braces. If I go out in public in braces; they better not say anything to me. That is one of the physical thin gs.
In high school, something similar happened when I had to fully get undressed out of my regular clothes and put on my swimsuit for gym. This was sophomore year. I had to learn to ignore people, meaning my classmates. I had an assistant help me; my school aid helped me change into my clothes. Nobody at my school knew I could walk. So when I got out of my wheel chair and I hung onto the hands of my school aid everyone was staring. Like, “Oh my god she can move her feet!”
They had made the assumption about your ability for you?
Right. Yes. I’ve had classmates ask me, “What’s wrong with you? Are you paralyzed?” When you are a teenager and you don’t live with people with disabilities or you’re not associated with that community; you do not know the terminology to use. I’ve learned that you have to forgive people for the things that they say when it comes to asking questions. But sometimes I don’t forgive them, and I do get very hostile and mean and rude back because some things you just don’t ask people.
To answer your question, basically, during stages of my life I’ve had to learn how to figure out what things that have been said or done by other people, do I choose to let go so that I can continue to enjoy my life. And not be embarrassed to be seen physically just because I don’t want people asking me questions. The educational part, with my learning disabilities, there was also a point where I felt uncomfortable especially in elementary school. Sometimes you have a disability affecting your learning, you have accommodations for your academics. One of my accommodations was that I would get additional tim e to do tests and assignments. It would make me feel uncomfolrtable always whe my teachers would say out loud, “Oh Alexis you can take your assignment home.” And that bothered me because I had classmates who would say things like, “Oh well what makes her so special? Why does she get to take her books home?” “She’s in class like the rest of us then she needs to work like the resst of us” I always felt like if I got a bad grade on something, I always thought I wasn’t as smart as the other people without learning disabilities. I always felt like in elementary school that I didn’t belong there and needed to go to a different school. But now my self esteem for my learning disability doesn’t bother me as much because I’ve understood you can do something wrong or do bad in a course and still be a very smart person. It depends on what you’re being taught and what the class is. You can’t be great at everything. I’ve just accepting that to be true and now that I’ve put other peoples thoughts and opinions out of my head; I’m able to focus more on myself. I have a 3.63GPA and I’m in college now. I’m a junior.
Where do you go to school?
I go to school at Northeastern Illinois University. I’m studying Communications for a major and a minor in Journalism. I want to be a Public Relations Specialist, so someone to write press releases. I have other passions such as theatre too. Which is why I like the program at NEIU. They have their media, communications, and theatre majors mixed together.
Let’s talk about ableism in the photography industry, tell me about your experiences as a model.
I have been modeling happily for a clothing company called Rebirth Garments since I was 21, so four years ago now. Now that I am a part of it, I don’t believe there is as much of a problem with photographs being taken and represented for people with disabilities because Re birth Garments celebrates everyone regardless of your ability, age, gender, sexuality, or race. When I hear Sky Cubacub that they want me to model for them; I’m like hell yes! When is it? What time? What am I gonna wear? Are you going to make something new? Are we dancing to music that already exists? I get very excited because I know when I’m around Sky and everyone else at Rebirth; I’m not worried about my weight anymore. I’m not worried about someone possibly seeing some or all of my surgical scars. I’m not worried that my body moves differently than others. So when I’m with Rebirth Garments, I can take pictures where I flex my muscles. I can take pictures where I’m laying on the floor. I can take pictures of me reclining back in my wheel chair. I can stand with one crutch, holding my hips. We’re very much represented. I feel as though in regular society, people with disabilities are being more represented now as opposed to a few years back. There is such a thing as models with disabilities, but it’s still not as common. You’ll only see maybe one or two white girls, and two Black girls and that’s it. But now if you go on social media like FB or Instagram; you’ll see a picture every now and again with the diversity. It’s not just people in wheel chairs; it’s people with Down syndrome or autism. I’ve noticed they’ve changed their looks too for what people with disabilities usually wear. A few years ago they only wore two different things; a ball gown or a pantsuit for women. But now, as things are changing, there are some women with disabilities wearing skirts.
Yes, they’re starting to add a lot more into the fashion that people with disabilities are wearing for these photo shoots. I feel like fashion prior to these changes erased sexuality and washed out gender.
Not that my gender or sexuality has been erased bfut people have attempted to put a label on me because I am associated with Rebirth Garments. Some people may think, I’m queer or gay. Which is great, if that’s who you are. I love everybody so I don’t care. My thing is, just like what Sky always says, “Ask! Don’t assume” But if people wanna assume and I don’t know you; I’m probably not gonna see you again anyways.
I am a confident woman now who identifies as straight but because I talk to everyone regardless of their gender or sexuality; people look at me and go, “Doesn’t that make you uncomfortable?” I respond, “No!” and they go, “Are you sure?” and I’ll exclaim, “Yes, I’m positive!” I’ve almost bumped butts with one, or I’ve danced with one person to be friendly. I’ve been kissed on the cheek by one. I’m not disgusted by another human being.
In other words; you’re not homophobic?
Exactly. I couldn’t imagine what it’d be like if someone tried to erase my sexuality or gender. But I mean those people are just ignorant if they were to do that. I would stay away from them on purpose. Things like talking about sexuality and gender, some people can be very disrespectful. I don’t wanna be in a situation where I feel like I need to get into an argument with them.
What are your goals for this shoot today?
My goals are, other than to have fun and be myself, my goals are to spread a message that you need to love yourself no matter what your disabilities are. If you don’t believe in something someone is saying about you regarding your disabilities, you don’t have to let them change your mind. If they’re being negative and saying things like, “You’re dumb. You’re lazy. You can’t do things for yourself.” Or “What can you offer society being disabled?” Don’t worry about all of that. Stay away from those people. Ignore them, move on, and just cut them out of your life.
My message is always positivity, have fun, and be who we are.
How do you feel after your photo shoot?
I’m feeling very empowered. And I’m very hopeful that people will be able to learn things about disability based on the project you’ve put together with my pictures and what I had to say. I hope they’ve learned a lot, not just about disability, but in general just that if a person has a disability or not; they’re human. Therefore everyone should be treated that way and they deserve respect. That means that if you see a person with disability or a group of people; talk to them. Never ever should you or anyone else make the assumption that people with a disability cannot speak for themselves. If you see another person say hello, but if you have a question for them ask them. They can speak up for themselves.
And I just wanted to say when there are other adults around and people ask them instead of asking us; it makes us feel invalid and invisible. I don’t like that. That is how I get into so many arguments with people. Just because they don’t get it.
They’re infantilizing you!
That’s a big topic I’ve covered over the several years of exploring the disability intersection. One of the biggest problems is people with disabilities are often ignored when it comes to their own care.
Their caretakers are given the default respect that the person with disability should be getting.
It irks my nerves. Everyday all day. Don’t do that. If you see my Grandmother or sister or whoever I’m with; you ask me. If you can look me in my eye; you can talk to me. Then again, I do understand when the person is non-verbal. Then that is different. But if they’re verbal or have a voice box where they type to speech recognition program. You always ask them. You don’t just assume anything.
Or speak about them like they’re not in the room!
Right, that is so rude. You know the saying, “Assume, you make an ass out of me?”
That’s my favorite saying, haha.
I mean you’re laughing at it because it’s funny but you’re laughing because you know what it means.
I’m laughing in TOTAL relation. Because so many people make assumptions about my ability level because I can walk. They don’t know by the end of the day I’m unable to use any of my limbs if I’ve done a full day of work.
What kind of interactions have you had with racism that have stuck with you?
The first interaction with racism, I was very young. I was five or six. I’m a Black woman and that’s how I identify but as a kid I’d just say, “I’m Black. Like my family” My first school that I went to was just for people with disabilities. We had a lot of different disabilities, some I can’t even pronounce. With that bein g said, I didn’t realize if people had the same or similar disabilities that they can still be mean and bully you. There was this little girl. Again, when you’re young and not exposed to things like racism, that’s just what happens. You go up to people and try to be friendly, “Hi. Do you want to play?” So this one girl, I said, “Hi!” Because I was trying to be her friend. She looked at me when I said hi to her, she stuck up her middle finger. Again, when your naïve you don’t know what that means. As I got older, that’s always stuck with me. I went home after hearing my bus aids talking. The bus aids said, “Oh you Guadalupe is racist” and I didn’t know what that meant. But as I got older I knew not to talk to her because she was funny acting and snotty. For a lot of years we lost contact but in 2012 she found me on FB. Ever since then, we’ve been back in contact and I’ve learned as she got older she doesn’t exhibit those racist behaviors.
She unlearned it, to a degree.
Yes, now that I’ve been around her Mother. And now that I know he Mother doesn’t speak English, I know where that may have come from.
Anti-Blackness is so prevalent amongst all races.
My thing is, I never understood racism. I know where it comes from in the books. But I just do not understand who started it and why. It irks the hell out of me. But other than that one experience, I’ve never felt that I was discriminated against because of my color. Because maybe I’m naïve and have chosen to block it out. Or maybe I haven’t experienced it recently or in the last few years. I try to be friendly to everyone even if were not going to be friend s in the end. Even if it’s just some mutual respect. I don’t like to see racism because the way I’ve seen racism is, and this is an analogy, I’m not gonna judge someone based on their color because I beg people everyday to see me for who I am as a person as opposed to my disability.
Right! You wouldn’t go back around and make judgments on other races.
Right, exactly. So you know other than that one incident, if people would say something in a general statement like you’re on the street randomly talking to someone who said, “Get away from me your n***er!” That’s ignorant. I would never approach someone like that. Playing or not playing. Nowadays, when people say ni**er you have to think it’s not always negative. If there were two Black people, and one person says, “Hey my nigger” it’s not like, “Oh my god. You Black person get away from me.” It’s like, my brother or my homie.
Reclamation. Hard r or a; if you’re Black that is your word.
The same thing with bitch like someone’s not going to say “Hey bitch!” like “Hey, I’m going to fight you bitch” No, it’s like, “Hey bitch you’re my girl” You have to be mature enough to understand the context.
And so many people don’t. They take it out of context thinking it’s their word to use.
That’s why you really have to know the person you’re talking to or group of people you’re hanging around. You can tell when someone you love is just playing with you versus being racist and mean.
Me personally, I don’t like being called a bitch whether they’re playing or not playing. When people get mad, they keep doing it. And I just want to start throwing hands. So I’d rather personally just not say it.
It’s also a gender thing. I feel like that is why I’m single. Because we’re talking about race. I wouldn’t like it if any man came up to me and said, “Hi Bitch” Like no. No.
Either I’m going to walk out or I’m probably going to try and fight you. Honestly.
Because I’m open to everyone, now that I’m older, I have a harder time with racist people around me. I stopped being friends with this woman who I used to call a very good friend of mine partially because she was racist. I don’t think it’s fair to meet any race or nationality and in 30 minutes decide they’re passive aggressive. And say, “Well, you can’t compare this person to me as to how they would treat you as a friend” Because I’m Black and they’re white. What does color has anything to do with how you treat a friend.
The only time race should impact your treatment of a friend is if you’re being culturally sensitive towards them and be aware of their traumas/racism faced due to their identity.
It’s a good idea for when you’re thinking about traditions with meals and things.
Right like making sure if they have a religious background, you make sure the food is something they can eat on that day or offer food at a certain time of day.
Right. It just bothers me to talk about race when people don’t try to learn. Like I hate when people say, “Well, she’s a Becky” You know what that means, right? She’s a white woman whose trying to steal a Black man.
It just bothers me. You have to be careful what you say. Even the whole thing with what your parents decide to name you from birth. Cause then people say, “Well, this person is Black anytime their name starts with Sq”
That type of racism, right. Like all the Black job resumes that get thrown out because they have a visibly Black name.
But then again, like LaShay. That could also be Irish.
Some people have said French! My thing with my middle name is I honestly don’t like it. But I’ve recently started using it since 2018 because I got so tired of people saying Alexis Smith is so common on Facebook. I don’t like it. It’s ugly. And they say, “No it’s beautiful” and I just don’t like any names that start with La because my Mom gave all three of us middle names starting with La. I guess I just didn’t like matching my siblings. It irks me and yeah I just didn’t like it. Like, before I knew it was my name and how to spell it; I was like what does that even mean? I didn’t even know some people have that as their first name. But now that I use it, I’m trying to make sure people are saying it correctly.
People call me EEEZEEE all the time, when it’s actually pronounced Eh-z. I always feel like EEZEE is like “easy” and I feel like most people think easy as in sexually.
I would think people say EZ as in Easy E the rapper.
That’s a good one! I would prefer that one.
But EZ like an easy woman? No. That’s just another stereotype of a woman with a disability. I’ve never had a boyfriend before, just yet, and I’m 25. I’d prefer to focus on school. But if I could learn to manage a relationship and finishing up school that’d be fine but as of right now there is no one I’d like to date. Even though I’ve had crushes on men before and talked to them on the phone. I don’t want people thinking, “Okay well He/she/they are disabled so their easy because they’d rather pick anything because nobody is going to be attracted to them”
Has your race and disabilities ever intersected?
I would say yes, unfortunately. But it wasn’t intentional on my part. Because I have a very bad ugly temper. Sometimes the least little thing that you say to me, that I don’t like, will piss me off and I will let you know. Sometimes I do curse more than usual. People will say, “Well, she’s a really angry Black disabled woman” Why do all those adjectives have to fit together and you know? Why am I angry? What did you say or do that I felt was not necessary that did not have to happen? The only positive way those words go together is if I’m describing myself on purpose for conversation or a biography.
It’s like the whole thing with my chair. There’s a lot of things that people say and do that I don’t like. Don’t ever in my life try to play with my joy stick. If you play with my joystick that’s telling me that you think it’s a toy. IF you do that to my chair that is like me saying to you that I want to hold your hand without asking your permission.
It’s not just a chair…it’s an extension of your..
Being! Yes, I don’t like when people try to hold onto the back of my handles to stop me from going places. Just tell me don‘t go in that direction; don’t try to hold onto the back of my handles. I see the look on your face, I’m telling you people have done this.
I cannot imagine the lack of awareness!
You DO know this is an electric chair. Meaning it has some power. Do you really think a little tug is going to do anything. No! The chair is 400 pounds, you’re little tug is nothing. That’s my example of “if you don’t know better than you gonna know better”