Backbone NC
journalism with a policy backbone
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Living Fully: Visibility at UNC

 

the backstory:

Visibility is the fabric of a movement.

Alongside recent advocacy efforts to incorporate the Accessible Icon on the UNC-Chapel Hill campus, Backbone NC conducted informational interviews with Michelle, freshman, and Tia, sophomore, two UNC students with cerebral palsy. Michelle and Tia said students with disabilities at UNC are largely treated with respect, but there's still a gap in understanding. As an essential step in that very understanding, visibility is not institutionalized at UNC in the way it's starting to be all across the country –– including within the U.S. Department of the Treasury, Gordon College, New York City, and the Jacksonville Jaguars of the NFL.

Let's be more like the Jacksonville Jaguars of the NFL.

Though the cost associated with a campus-wide overhaul of the traditional handicapped sign would exceed thousands of dollars and break certain federal regulations, incorporating the Accessible Icon in the student union or student stores alongside traditional signs would only cost a few hundred and eliminate legal concerns, according to Accessibility Icon Committee member Taylor Emory. Backbone NC recommends the Union Board of Directors at UNC approve the Accessibility Icon Committee's proposal (or collaborate with Backbone for a larger fundraiser) and move forward with the additional signs.

Sign the petition if you want to see the Accessible Icon at UNC and bring visibility to students with disabilities in a sustainable way. 


Visibility matters. Changing the accessibility signs in the Union matters. We need to stop perpetuating the stigma that people with disabilities are helpless. These sign changes can help people realize that just because someone needs accessible entrances and bathrooms doesn’t mean they can’t be independent.
— Michelle Ballasiotes, Class of 2020

 
 
 I had a stroke before I was born. My mom was advanced maternal age when she had me, so she had an ultrasound at 20 weeks and then at 29 weeks. And they were like, ‘Oh you’re baby’s brain ventricles are enlarged. She’s probably going to be born with hydrocephalus, but we can’t really say for sure. And that’s really all we know.’ But because it was before I was born, they were able to interview neurosurgeons. And so when I was three days old, the neurosurgeon went in – and I do have hydrocephalus – so he placed a shunt in my brain. It wasn’t until the surgery that they discovered the hemorrhage on the left side of my brain – that was what caused the stroke.

I had a stroke before I was born. My mom was advanced maternal age when she had me, so she had an ultrasound at 20 weeks and then at 29 weeks. And they were like, ‘Oh you’re baby’s brain ventricles are enlarged. She’s probably going to be born with hydrocephalus, but we can’t really say for sure. And that’s really all we know.’ But because it was before I was born, they were able to interview neurosurgeons. And so when I was three days old, the neurosurgeon went in – and I do have hydrocephalus – so he placed a shunt in my brain. It wasn’t until the surgery that they discovered the hemorrhage on the left side of my brain – that was what caused the stroke.

 I remember trying so hard to learn how to skip down the hallway. Because my foot wouldn’t go off the ground for the longest time. So PE and everything – I’m more of a mild case, so I could still do PE for the most part but not everything. I tried my best obviously, but I couldn’t skip. Galloping – I got pretty fast at galloping. That’s pretty much what I would do when everyone would skip. I’d just be like, yeah!

I remember trying so hard to learn how to skip down the hallway. Because my foot wouldn’t go off the ground for the longest time. So PE and everything – I’m more of a mild case, so I could still do PE for the most part but not everything. I tried my best obviously, but I couldn’t skip. Galloping – I got pretty fast at galloping. That’s pretty much what I would do when everyone would skip. I’d just be like, yeah!

 I worked on that and I tried to learn how to ride a bike. Didn’t quite work out. And then I tried again when I was 14 with a program that was mainly focused on kids with autism. Maybe if it was two weeks it would’ve worked, I don’t know. But also my right foot would always come off the pedal. There wasn’t muscle to like keep it on. I can do a tricycle though. I really wanted to get a tricycle but my parents wouldn’t let me. I’d be like, Yeah judge me.

I worked on that and I tried to learn how to ride a bike. Didn’t quite work out. And then I tried again when I was 14 with a program that was mainly focused on kids with autism. Maybe if it was two weeks it would’ve worked, I don’t know. But also my right foot would always come off the pedal. There wasn’t muscle to like keep it on. I can do a tricycle though. I really wanted to get a tricycle but my parents wouldn’t let me. I’d be like, Yeah judge me.

 Yeah so. Georgia was rough. I’d say people are not direct about it. People would just like ignore me or be “pitty friends.” You know, like sympathy friends? And not really true friends. But it was also hard because when I moved to Georgia it was going into 7th grade so those friendships and cliques were already built. Well I mean it was out of good intentions. I wouldn’t be invited to like an ice skate party or anything probably – but that's because I can’t ice skate.

Yeah so. Georgia was rough. I’d say people are not direct about it. People would just like ignore me or be “pitty friends.” You know, like sympathy friends? And not really true friends. But it was also hard because when I moved to Georgia it was going into 7th grade so those friendships and cliques were already built. Well I mean it was out of good intentions. I wouldn’t be invited to like an ice skate party or anything probably – but that's because I can’t ice skate.

 It’s just people, you know. Whatever they see looks the most different, they’re going to be the most apprehensive

It’s just people, you know. Whatever they see looks the most different, they’re going to be the most apprehensive

 I’ve been happy with all the reactions here. It’s not pity. I don’t know necessarily how to describe it. It’s kind of like, I think my personality over-shines what they see physically. They just go, ‘Oh, you have a thing, what happened to your leg.’ Like, I bring them up here instead of looking down there. And once they get to know me and like how I am, they’re just like, 'Oh okay.' And pretty quickly it’s kind of like the friendships I built in Chicago. They’re like, ‘Oh it’s just a part of who she is. And it’s no big deal.’ Does that make sense?

I’ve been happy with all the reactions here. It’s not pity. I don’t know necessarily how to describe it. It’s kind of like, I think my personality over-shines what they see physically. They just go, ‘Oh, you have a thing, what happened to your leg.’ Like, I bring them up here instead of looking down there. And once they get to know me and like how I am, they’re just like, 'Oh okay.' And pretty quickly it’s kind of like the friendships I built in Chicago. They’re like, ‘Oh it’s just a part of who she is. And it’s no big deal.’ Does that make sense?

 Stroke is often misdiagnosed and overlooked as like just a simple developmental delay. 'They’ll outgrow it.' And you know, 'Time is brain' is what they say with stroke. Because like your brain is like plastic, and neuroplasticity, you know – it can rework its courses. So that’s why getting to therapy at such an early age is important, because you’re re-training your brain paths to function. And that’s kind of where my advocacy comes from with the American Heart Association. I share my story to help doctors recognize the symptoms of stroke, and educating people that stroke can happen to children, and giving families the peace of mind that – Don’t necessarily get all freaked out about it, just keep in mind that when you have kids or when you see a child only using one hand, take them to the doctor and get them checked out. I don’t know where I’d be if I didn’t have the therapy starting at 6 months of age.

Stroke is often misdiagnosed and overlooked as like just a simple developmental delay. 'They’ll outgrow it.' And you know, 'Time is brain' is what they say with stroke. Because like your brain is like plastic, and neuroplasticity, you know – it can rework its courses. So that’s why getting to therapy at such an early age is important, because you’re re-training your brain paths to function. And that’s kind of where my advocacy comes from with the American Heart Association. I share my story to help doctors recognize the symptoms of stroke, and educating people that stroke can happen to children, and giving families the peace of mind that – Don’t necessarily get all freaked out about it, just keep in mind that when you have kids or when you see a child only using one hand, take them to the doctor and get them checked out. I don’t know where I’d be if I didn’t have the therapy starting at 6 months of age.

 When I was younger I would just always say my leg brace helped me walk better, because you know at that age, kids didn’t know what a stroke was. Now that I’ve done all my advocacy and everything, I feel inclined to say, ‘It’s because I had a stroke before I was born.’ They’re not as, you know. Because I guess they see me out and about and just –– living my life.

When I was younger I would just always say my leg brace helped me walk better, because you know at that age, kids didn’t know what a stroke was. Now that I’ve done all my advocacy and everything, I feel inclined to say, ‘It’s because I had a stroke before I was born.’ They’re not as, you know. Because I guess they see me out and about and just –– living my life.

 Yes, I have a disability. And I don’t try and hide it. And I don’t try and seem, ‘Oh, feel pity on me, feel sorry for me, help me.’ I see it as I’m going to take what I have and bring the good out in it, you know? And just use what my upbringing has been and all that I’ve been through –– for good. A lot of the ‘heart disease people’ and ‘stroke people’ I’d advocated with, they don’t want people to be sorry for them. They want to be understood.

Yes, I have a disability. And I don’t try and hide it. And I don’t try and seem, ‘Oh, feel pity on me, feel sorry for me, help me.’ I see it as I’m going to take what I have and bring the good out in it, you know? And just use what my upbringing has been and all that I’ve been through –– for good. A lot of the ‘heart disease people’ and ‘stroke people’ I’d advocated with, they don’t want people to be sorry for them. They want to be understood.

 The heart walk for Raleigh was just this past weekend, and I was sitting across the table from a woman and she said people would come to her and be like, ‘Oh wow, you don’t look like you’ve had a stroke!’ And she went through years and years of therapy, and so to her, that was kind of offensive? I don’t know if that’s the right word, but it was kind of ––– People don’t always understand disabilities.

The heart walk for Raleigh was just this past weekend, and I was sitting across the table from a woman and she said people would come to her and be like, ‘Oh wow, you don’t look like you’ve had a stroke!’ And she went through years and years of therapy, and so to her, that was kind of offensive? I don’t know if that’s the right word, but it was kind of ––– People don’t always understand disabilities.

 My cerebral palsy – it only affects my physical abilities, so I really – I feel very fortunate that my CP is very mild. There are people with cerebral palsy who aren’t even able to speak. Not that that’s bad, but I definitely feel very lucky that I am still able to do everything that I want to do. I haven’t ever had any major medical issues that involve the hospital, like other people with more severe CP. It definitely makes my life a little bit more challenging. I have to plan ahead a lot. So I have to buy a lot of certain types of clothes that I know I can get on and off easily. So I don’t buy a lot of dresses with back zippers. Small things that people without disabilities don’t ever have to think about.

My cerebral palsy – it only affects my physical abilities, so I really – I feel very fortunate that my CP is very mild. There are people with cerebral palsy who aren’t even able to speak. Not that that’s bad, but I definitely feel very lucky that I am still able to do everything that I want to do. I haven’t ever had any major medical issues that involve the hospital, like other people with more severe CP. It definitely makes my life a little bit more challenging. I have to plan ahead a lot. So I have to buy a lot of certain types of clothes that I know I can get on and off easily. So I don’t buy a lot of dresses with back zippers. Small things that people without disabilities don’t ever have to think about.

 Cerebral palsy itself doesn’t have any intellectual effects; however, people with CP can also have other intellectual disabilities. But usually CP itself – it only really only affects your motor cortex and not at all intelligence. So technically speaking, purely physical. However, people with CP can also suffer from anxiety, or depression – or it would be very possible to have multiple disabilities.

Cerebral palsy itself doesn’t have any intellectual effects; however, people with CP can also have other intellectual disabilities. But usually CP itself – it only really only affects your motor cortex and not at all intelligence. So technically speaking, purely physical. However, people with CP can also suffer from anxiety, or depression – or it would be very possible to have multiple disabilities.

 So CP can be a challenge. Coming up with ways for me to wear what I want and do what I want and not have it take up a lot of extra time. Also – something that’s always been, like, annoying is I walk slower. So it can take me awhile to get from point A to point B. But overall my CP hasn’t affected my ability to like make friends or be at the school. I haven’t ever had any medical issues that involve the hospital. So I feel a bit lucky to not have ever had to deal with any long-term chronic pain or anything like that.

So CP can be a challenge. Coming up with ways for me to wear what I want and do what I want and not have it take up a lot of extra time. Also – something that’s always been, like, annoying is I walk slower. So it can take me awhile to get from point A to point B. But overall my CP hasn’t affected my ability to like make friends or be at the school. I haven’t ever had any medical issues that involve the hospital. So I feel a bit lucky to not have ever had to deal with any long-term chronic pain or anything like that.

 I helped create a national inclusion campaign that’s called I Am Norm. It’s a whole campaign that is based on the idea that we are all different – but different is like normal. So it’s all about embracing differences and making sure that everyone feels valued and included. So I helped create that campaign seven years ago. So I’ve traveled to different conferences where I presented about the campaign itself, or I would talk about my story, or what disability means to me. So I’ve been to California, Chicago, Atlanta, and I’ve been to DC a lot.  My work with I Am Norm is what makes me stand out. Inclusion advocacy is something that I’m like super passionate about – and why I was super excited to get along with Advocates for Carolina because it allowed me to bring my passion that I had in high school and continue that on campus and more local settings.

I helped create a national inclusion campaign that’s called I Am Norm. It’s a whole campaign that is based on the idea that we are all different – but different is like normal. So it’s all about embracing differences and making sure that everyone feels valued and included. So I helped create that campaign seven years ago. So I’ve traveled to different conferences where I presented about the campaign itself, or I would talk about my story, or what disability means to me. So I’ve been to California, Chicago, Atlanta, and I’ve been to DC a lot.  My work with I Am Norm is what makes me stand out. Inclusion advocacy is something that I’m like super passionate about – and why I was super excited to get along with Advocates for Carolina because it allowed me to bring my passion that I had in high school and continue that on campus and more local settings.

 I am not photogenic. 

I am not photogenic. 

 People definitely have different views on whether your disability is a part of your identity. For me, I’m a person, with a disability. So I like to use what they call ‘person-first language.’ It’s basically like saying, this is a person with cerebral palsy or with a disability. But I would not call myself a ‘disabled person.’ You wouldn’t call your friend ‘the redhead.’ You would call her Shelly, or Chris. So how I define it for me is as an individual person – I would say that my disability is a part of who I am. It definitely has shaped my character and my personality but it definitely doesn’t define me in a sense of ‘I am only my disability.’ For me, it doesn’t put me in a box.

People definitely have different views on whether your disability is a part of your identity. For me, I’m a person, with a disability. So I like to use what they call ‘person-first language.’ It’s basically like saying, this is a person with cerebral palsy or with a disability. But I would not call myself a ‘disabled person.’ You wouldn’t call your friend ‘the redhead.’ You would call her Shelly, or Chris. So how I define it for me is as an individual person – I would say that my disability is a part of who I am. It definitely has shaped my character and my personality but it definitely doesn’t define me in a sense of ‘I am only my disability.’ For me, it doesn’t put me in a box.

 CP has taught me to not give up right away. It made me more persistent, more hard-headed. It definitely taught me how to pick myself up off the ground, like, metaphorically and, like, physically.

CP has taught me to not give up right away. It made me more persistent, more hard-headed. It definitely taught me how to pick myself up off the ground, like, metaphorically and, like, physically.

 And it definitely has pushed me to really evaluate like who I spend my time with and who I interact with. I really try to be with people who make me feel ‘normal.’ Or people who aren’t afraid to be with me. You would be surprised. One of my best friends is super sassy and we are always smack-talking and joking around. And I love her for it. But people in the dining hall will hear our banter, and I’ve gotten worried looks. And for me I like to find people who are not going to be like, ‘Oh, I can’t joke around with you. I don’t want to offend you.’ I don’t know, I want to find people who don’t tiptoe around the fact that I have CP, who can accept me, and mess around, and be funny about it and laugh with me when I fall, and who aren’t going to be afraid to try new things.

And it definitely has pushed me to really evaluate like who I spend my time with and who I interact with. I really try to be with people who make me feel ‘normal.’ Or people who aren’t afraid to be with me. You would be surprised. One of my best friends is super sassy and we are always smack-talking and joking around. And I love her for it. But people in the dining hall will hear our banter, and I’ve gotten worried looks. And for me I like to find people who are not going to be like, ‘Oh, I can’t joke around with you. I don’t want to offend you.’ I don’t know, I want to find people who don’t tiptoe around the fact that I have CP, who can accept me, and mess around, and be funny about it and laugh with me when I fall, and who aren’t going to be afraid to try new things.

 At Carolina I don’t feel like I have to try as hard to feel truly accepted for who I am. There will always be people who look at me funny or stare at me when they hear me talking to people. But I mean honestly that’s something that I have dealt with my whole life and it’s come to the point where I don’t let it bother me. I choose to not get angry when people stare.

At Carolina I don’t feel like I have to try as hard to feel truly accepted for who I am. There will always be people who look at me funny or stare at me when they hear me talking to people. But I mean honestly that’s something that I have dealt with my whole life and it’s come to the point where I don’t let it bother me. I choose to not get angry when people stare.

 A good way to put it would be like, talk to me as an individual. As an equal. As a peer. Please don’t ever talk down to me, or talk differently than you would to someone –– I hate special treatment. There’s a difference betweens special treatment and accommodation. Sure I might need to take the elevator if we’re going up a bunch of stairs. But that’s different than being like, ‘Tia, do you want me to hold your hand?’  No, right? I will ask for help when I need it. Don’t baby people; don’t assume that you know what they need. Most people will tell you this. People with disabilities hate it when people assume that you know what we need. I’m very vocal, and I get that not everyone else is. But even shy or non-verbal people would probably express similar feelings.  I really get annoyed when people do stuff for me without asking.  My motto is that I will always ask for help but otherwise, let me do me. You know what I mean? Everyone has challenges.

A good way to put it would be like, talk to me as an individual. As an equal. As a peer. Please don’t ever talk down to me, or talk differently than you would to someone –– I hate special treatment. There’s a difference betweens special treatment and accommodation. Sure I might need to take the elevator if we’re going up a bunch of stairs. But that’s different than being like, ‘Tia, do you want me to hold your hand?’  No, right? I will ask for help when I need it. Don’t baby people; don’t assume that you know what they need. Most people will tell you this. People with disabilities hate it when people assume that you know what we need. I’m very vocal, and I get that not everyone else is. But even shy or non-verbal people would probably express similar feelings.  I really get annoyed when people do stuff for me without asking.  My motto is that I will always ask for help but otherwise, let me do me. You know what I mean? Everyone has challenges.