Kathleen shares her story about her families’ belief in a life with big possibilities and dreams - and not being defined by disability.
 

 TRANSCRIPT:

When Grace was born she was born with some issues, we didn’t know right away it took a few months. But for some reason my husband and I took on this belief that we were not going to be defined by whatever this was that was going on with Grace. And it was partly because at that time we had a three year old son and we just kept thinking like ok so we are going to have some serious issues going on with Grace we are going to have to give her lots of attention we get that. We understand, like we went to counseling and we understand we are going to constantly grieve the loss of her dreams or our dreams for her, etc. etc.  

But we kept thinking we’ve got this three year old boy too, we can't just be focused on Grace. And we can’t define Ben by Grace. And I didn’t want to be defined by Grace. Like I saw myself having friends and connections and doing things that were unrelated to disability. So we really had this mindset that we can’t be defined by this disability. And I will tell you that it is profoundly hard to work against that because for my daughters condition there’s an organization out there, she has a neuromuscular condition so its MDA. So immediately, MDA gets involved right at the hospital, they want to be involved in your life and they want you to give money and all this other stuff, right? 

And if you have someone who’s born with Down syndrome it’s the exact same thing, right? And I’m sure it is with autism and all of these groups. And I understand that all of these groups do really great work and some of them like the MDA fund a lot of important research for treatments and cures and all that stuff. So I am not down playing the importance of that, but what happens as a parent is you’re inundated from the get-go with ‘be a part of the disability community.’

And that was hard for us because we were thinking like ok, we are not this is not who we are, like we don’t define ourselves this way.  

We had this belief in Grace from the get-go and I remember a doctor looking at me like I had four heads. And I told them all Grace is going to go to college and she’s going to do whatever she wants in life. We had these huge beliefs that Grace could do anything, in some ways it was bad because Grace isn’t going to college. And to have this mindset of that being what defines a successful life, is not good. If she doesn’t go to college that doesn’t mean she isn’t important or wonderful.

The good part of it is we just always had dreams for her. And we believed she could do a lot of things.  

So we weren’t even in therapies and we love OTs, but you know you get to a point and you can’t applaud what accomplishment she just made, you immediately have to fix the next thing. But we wanted to be focused on the positive. And we would say often we don’t want to be the poster family for MDA, we don’t want to be the poster family for disability. And that’s how we lived our lives. And then after that, we found a school. And literally this school — I went in one day, they never looked at Grace in terms of disability. It just wasn’t an issue. Grace went in and she needed a walker at this time to go in. She went in with her walker and they did, I don’t want to call them interviews, but it was just to see if the child was ready to go to school at that point. And she went in with her walker and she did what most two and a half year olds do, which was cry like anything because their mom just left them and they’re in this room with all these kids they don’t know and never met before and these teachers.  

They accepted her and I want to make sure I quote this correctly, but I remember going into school one day for these little teas that they do, it was a Montessori school, Mercy Montessori. And they invite you into a tea that your child does for you. I went in and we were sitting in this little circle in these teeny tiny chairs. And the kids are all on the floor. And Grace is on one side of me and another kid is on the other side of me. And the other child puts his or her (I don’t remember) hand on my leg and says “now she is going to need to use your leg to stand up so she’s just going to stand up that way.” I was like oh my gosh, like he didn’t say she can’t get up. What that little child said was this is how she does it.  

And then I followed her to her work, which is what they call them at Montessori. And her partner said to me, it was a little boy. So you will see that I do it this way and Grace does it this way and we just both get it done. And it was amazing. Now one of the things that I did do is they asked me if I wanted to address the class, when Grace first joined and talk about Grace’s concerns or issues or anything. And I said no I don’t want to do that because then what everyone hears is that Grace can’t do this, or you need to help her with this and I just felt like everyone will figure it out.  

Between the teachers and the students, they all figured it out. And it was just beautiful.

And we stumbled across that. We really did. We were just looking for Montessori setting because our OT said I think it would be good for her to be in a Montessori setting. So that’s all we were looking for and this is what we found and it was wonderful and it was in line with what we valued as a family, but we also failed. 

So swimming upstream, we finally cave at one point. MDA said we’d really like to hear your family's perspective it’s a little different then a lot of our other families. And I thought well that’s fine we could do that because they’re letting us talk about our perspective. Well it was awful, and I had to cut it short because basically they wanted me to tell a sob story about our daughter in order to get money, right? And I hate it, I get it but I hate it. So the man came to our home and started to asking me these very specific questions that were to go down this sob story path. And I just had to say look we’re not going down that path. You either say what we want to say or we end it right here. So he let us say a few things and I think it was a very abbreviated I think film for what they were looking for. But we learned a really valuable lesson that you have to hold strong, you have to understand what other peoples’ values are, because even when you cave, maybe you cave into someone who really shares your values. But there are going to be lots of places where you feel like you’re going to cave and you do cave like we did, and their values are not our values and we didn’t get that. If we had gotten that, we probably wouldn’t have caved.  

The other thing that I would say is, you know, as a family we do struggle. My husband worries about the finances, (I’m not crying I really have something in my throat) — I worry about the friendships, whose going to be in Grace’s life. We’ve taken Grace and Ben to several countries, multiple times. And Grace’s disability has never stopped us from doing anything. She’s had this amazing life and that helps move me upstream. 

Where we are today is, we no longer have our dreams for Grace, we have Grace’s dreams for Grace. 

Her dreams are to become an actress on Broadway. So we are not going to crush Grace’s dreams ever. She can try to do that as long as she wants. We will support her to the best of our ability to do that. Eventually she’ll figure out that, you know what, I just want to be in Cincinnati and if I can be in something related to theater and history I’ll be good. And I think she’ll come to that on her own. So we’re on this path now where she’s doing a lot of things around that.. She’s doing a one-woman show, that she and myself and some else has written, and she’s going to perform that hopefully in the spring. She’s doing this with an actress who actually was in the movie that’s just out with Robert Redford “The Old Man and the Gun” I think it’s called, and she works with Grace every week. Grace has invited her to go to some plays and she has gone to these plays with us. So this is a person who until Grace’s high school acting teacher gave me her name, she had no sense of anyone with a disability.  But she understands what it is to be an African American woman in the theater. And so she knows how you can be marginalized that way.

We also - we support her to have people who know her. 

So Grace today is in the church choir, she’s not in a special needs choir. She's probably not the best singer, in fact I’ve kind of thought she might be the worst singer until the other day and someone was a cantor and I though, yeah maybe not. She's working with Starfire to do a StoryCorps. So people are seeing Grace now as the person in the choir but also the person who is doing this StoryCorps thing. And when Grace is not at choir, people stop us on the way out of church, “Where’s Grace?” She’s missed when she’s not in choir. So those are really great ways of Grace being in the community.

So slowly but surely — Grace is in a valued role. And I think that’s all I wanted to say. That’s our family.  

Sean Barnes is the owner of Ladles Soup, a family-owned restaurant specializing in soup, sandwiches and salads. Sean moved here recently from Charleston and he was looking for a way to get more involved in the community, when he met Emily. The story he shares is about the relationships that he formed with Emily as an employer and how it woke him up to a whole new idea of what it can mean to be a boss.

He told his story at our BYOB(reakfast), a storytelling event held at Starfire monthly.

TRANSCRIPT: In March, I moved up here to Cincinnati with my husband from Charleston, South Carolina. We started this franchise company in Charleston, South Caroline in 2007 and we have 13 nationally. We moved to Ohio because one of our friends decided they didn’t want to own the store anymore. So we took over the market, moved our entire life up here, bought a home even. Fell in love with the city it’s great. Met Emily with Chris, he came in and asked for job opportunities. My first initial response or my first thought because Emily has cerebral palsy so she’s actually in a wheelchair with a controller. So my first thought was, well I mean I would love to but there’s no job here for you in this industry because you have to stand up all day, and you have to be able to reach certain things. And I’m just thinking like it’s not going to be, I’m not going to be able to give her something because she does not have the ability to perform the task. So then Chris said she really enjoyed social media. I was like ok well maybe there would be something there. So I thought about it and we hadn’t had anybody overseeing our social media except for my step-dad because its family owned and operated.  

So he runs the Facebook and Instagram and everything. So we really wanted to entangle ourselves into the Cincinnati community since we have no roots here. So I thought what better way then to be involved in a community organization such as Starfire. So I asked him if we could let Emily take over. And then we figured out that we would do this program called Emily’s choice. Which really helped us out too, she could come in, she would try the food, she would try like the half sandwich and something off the menu and she would create this combination. And then she would take it home and try it and I would request that she would send me a rough draft of her feedback of the food by Friday. At first it was like three sentences of the food and then four of like personal experiences throughout the week.  

So we had to kind of cater it as it evolved, and we had to be like you can’t say that this is horrible, you know, because you’re working for the community, so you have to like I mean as much as you want to say it you have to say it’s delicious or not my personal favorite but..., so we started catering that and I told her we could throw in a segment too where she could talk about her week. And when Emily comes in on Mondays she comes in at 1:00pm because that’s her lower her down time and she comes in. The struggles at the beginning were like talking to her because she doesn’t communicate back unless like she will but normally she’s in her tunnel vision of Instagram followers, and she’ll follow all these people and she’ll look at them and I’m trying to have a conversation with her and Its kind of difficult sometimes to hold her attention. I found myself like halfway through it feeling like a butt one day because I was being more stern like hey listen we have to get this done. And I just felt bad because I was like oh wow I hope I didn’t talk to her badly and make her feel bad. 

Then the coolest thing was when we went to see A Star is Born with Lady Gaga, because that’s what she wanted to go see, and that same showing there were four other people with who were disabled, and they came in and they were mostly in wheelchairs. So the people there trying to fit five people with wheelchairs, automated wheelchairs in there at one time. And this one girl, was sitting next to Emily and this is when I saw her personality shine through. Because normally her personality is through text and its you know like she hasn’t really opened up to me but she was sitting there and this one girl halfway through the movie, right next to her, starts snoring. And I just see her look at the girl, turn her head to the right and turn back and like roll her eyes, and I was like *laughter* I was like, because she’s really getting into the movie. So I don’t know it was really funny. I really love working with her she’s a fantastic human. The cool thing is I told Emily at the start she would get paid for her service per store, so each store that we open her pay would increase and it will add an extra percentage. It’s pretty cool, we are going to continue, we love Emily.  

BYOB(reakfast) live storytelling event is supported by our friends at Contemporary Cabinetry East

“I hope, wherever you come from, 
there is someone who holds your story. 
Someone who remembers you when you 
were knee-high to a grasshopper.”  
–excerpt from “Who Holds Your Story” by David Pitonyak  
 
As a writer, I tend to notice, document, hoard interesting bits of human lives into my brain, and save them in a private stock pile like a squirrel. Small notes in my phone for later, scrawled reflections or observations in the margins of agendas, notebooks. In my phone is a running tab on observational human behavior that I found interesting, troubling, curious.

There was the man at the YMCA who swam wearing multiple gaudy gold rings and splendid gold chains tangled in his thick, salt and pepper chest hair. Back and forth in never ending breaststrokes, his jewelry would catch the sun in the overhead pool skylight and glint across the lanes. 

There was the exasperated mom I overheard in a coffee shop lamenting to a friend that her daughter was going to lose her full ride if she didn’t get her shit together and get over that eating disorder phase.

The single mom at the airport force feeding a breakfast sandwich to her three children, alternating bites like baby birds in a nest as the TSA line inched up. 

The post on a neighborhood Up For Grabs Facebook page offering used, natural deodorant, with the disclaimer that it caused a rash. 

While these anonymous observations are collected innocently for no apparent reason, other than what it shows me about the curious nature of humanity, there’s a distinct difference in documenting lives of people we know, people we support, people we provide services to more intimately. 
 
One of the more challenging conversations we’ve had at Starfire over the past year is the importance of storytelling and the delicate line we must tow in telling someone else’s story. The question of “who holds your story” tugs at me and is especially important for nonprofits to consider.  Are we crafting people’s stories to fit our own purpose? How do we, as nonprofit leaders, as social media marketers, as fundraisers and donor relations professionals and grant writers, as public relations professionals, share a story that is honest and truthful and respectful and genuine?  How do we tell the truth of the matter, give real life context, without violating the depths of someone’s personal experience with trauma or pain? 

Furthermore, should the holder of someone’s story be a human service organization? Is a family’s story held sacred when it’s also needed for grant reports and to leveraging funding? Where is the line? How do we know if we’ve crossed it? 
 
Starfire uses “a secure online database powered by University of Cincinnati Center for Clinical & Translational Science and Training” to document and measure the outcomes of our work. That’s how we put it in grants. Of course, this is important to do: is what we say we are doing getting done?  Are people with disabilities becoming more connected to the community?  Are people with disabilities finding jobs? Are creative projects being launched?  Are we taking people with developmental disabilities lives seriously with our time together?  But there’s also the real story of our work that documentation simply cannot tell. Things like: spontaneity, intentionality, beauty and creativity. Or the opposite – intolerable experiences like getting tangled up in “service snafus” or emergency respite or litigation. 
 
Internally we wrestle with how to share this work – the behind the scenes work of Community Builders, the brave first steps in creating a project, and the new work of supporting families leading creative projects in their own communities. We send emails and newsletters and produce Annual Reports, produce videos, lead trainings, launch podcasts, and write blogs. We make a commitment each time: to honor each person’s story truthfully, delicately, and with the expressed permission and participation of those sharing their lives with us. Because these stories don’t belong to Starfire. Sure, our fingerprints are all over the scene, but they aren’t stories that we as a nonprofit organization can hold. These stories are held by people – as ordinary as you and I, stories that are held by moms and dads and brothers and sisters, coworkers, neighbors and friends. A snapshot in time celebrating the struggle of making something good, something more, happen together in the world. 

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