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.  

This is Carol Combs’ story of “awakening” – told live at our BYOB(reakast) event. Carol shares how her family went on a journey over the past year to step out of comfort zones, invite people in, and start connecting by starting a community quilting project in her neighborhood.

TRANSCRIPT: If somebody were to tell me ten years ago that I would be sitting here sharing the story of how our story went from “I” to “we” I probably would have chuckled a little bit and been like, what are you even talking about?

So ten years ago my son was born and he was born into a world that wasn’t made for him. He has a plethora of diagnosis that we received at an early age. And with that came a big long list of can’ts and won’ts and nevers and it was extremely disheartening. What I have discovered over the last year and a half/two years is I thought at the beginning I had this “we” thing down, like “oh this is us and we’re doing it” and what I have learned is that it was more “I” that was doing it, “we” was just a collective term, of well it’s me and the kids and we got this.  

We said no to a lot of things because the older Grayson got the more aware the more barriers we were facing. The more that we worked with our providers the longer the list of can’ts and wonts grew and we kind of isolated ourselves.

We said no to a lot of things because the older Grayson got the more aware the more barriers we were facing. The more that we worked with our providers the longer the list of can’ts and wonts grew and we kind of isolated ourselves. So it was very easy to say no to going out and doing things, because there were those barriers: there was a lack of understanding, there were stairs, there were comments made, “What’s wrong with him?” and so it was very easy for us to close ourselves off and kind of give into this notion that his good life consists of providers and services and that’s it. He doesn’t have a long life expectancy so we are just going to kind of say here you go, here’s these people who are going to help you and we isolated ourselves.  

And looking back and kind of reflecting, I gave into the notion that we were bound to this life of commiseration and sadness. So over the last year and a half I was introduced to what happens if you say yes to more, what happens if it’s not just Carol doing these things it's you all doing these things. You all being me and the kids and whoever we ask to come and have a seat at our table.

I did not realize the power of saying yes and I didn’t realize the power of connections, or what I was missing until I started saying yes.

I did not realize the power of saying yes and I didn’t realize the power of connections, or what I was missing until I started saying yes. So we said we are going to go along with for this journey and see what it’s like. And you know what’s the worst that can happen? People will tell us no and that’s ok. So I started thinking about what can we do to get out into the communities what are the barriers that we are facing, what has kept us from going forth and making those connections in our community.  

 And as I made this list I started seeing that there are ways to overcome it, all I had to do was ask. You have something that you are willing to share with our family we want to do a family project. It is fortunate to have Sandy here today, I’ve known Sandy for nine years and she has always been one that says “what can I do to help, let me be a part of things.” And I’d be like “no.” I was afraid to let people into our world, I knew I was struggling with the diagnosis, and how to overcome those barriers and I would say no because it was just easier to say no, it was a way of protecting our family from people walking in and out of our lives. And it was a way of protecting those from what I felt at the time was sadness of the diagnosis. Thankfully Sandy was always there and she was always kind of “what can I do, is there anything I can do?” 

So we started thinking about our gifts and our abilities as a family, that was something that I had never really done before. And we recognized that Grayson has the gift of bringing people together and looking back over our journey that is something he’s always been very good at. His older sister she is extremely creative, very artsy.

So we said “yes” and started discovering our gifts.

And I asked Sandy I said “we are thinking about doing a quilt project. So she said “well I know how to sew.” And we started collaborating together, and saying what does this quilt look like, how can we make this ours, how can we get our community involved.  

And we started hosting these Sew and Play events. Each week they grew, some weeks it was just us and that’s ok because in that time we developed these relationships that are so deep, and I learned about Sandy and some of our other friends. I learned things about them that I never knew before and it was because we had come together, it was because I invited them to our table and they said yes. And I started discovering that we have the same Christmas Eve tradition, that we all have this special like sparkle for Christmas. I discovered that we had people showing up who had always kind of been in our life but we never like invited them to come to things and they started showing up. We stepped out of our comfort zone, we invited people, people said yes. 

We stepped out of our comfort zone, we invited people, people said yes. 

We have this beautiful quilt that documents kind of our summer, of growing and learning about our community and connecting. And we still have some pieces left to add. This quilt means the world to me. I can tell you the stories that were shared the day each of these quilt panels were made. We all worked together on these quilt panels. We met over thirty different people in our community. All because we were like, we’re going to learn how to sew together. And we are going to tell stories and we are going to gather around once a week and just let people discover Grayson and discover us. And just be open to more.  

So our latest event was a Christmas caroling event, we held it in our neighborhood right outside on our front lawn practically. It was definitely a big step for us. So I was looking at pictures and the first picture for our family project and it was just the kids and I. And this year we rounded out the year of a picture of the kids and I and about twenty other people from our neighborhood, from our community, from our past. That we didn’t even realize were following our story and they said, “Oh they’re doing a caroling event let's show up and support.” We’ve allowed people into our circle and we have discovered that those connections are so so so important, it’s made a huge impact on our lives and it just has made life better for us.

We’ve allowed people into our circle and we have discovered that those connections are so so so important, it’s made a huge impact on our lives and it just has made life better for us. 

It’s a brighter life. Because we can now go out and we’re not alone and I realized that all along it was me doing these things and I wasn’t letting anybody else in. And the moment I started inviting people to our table and the moment they started saying yes we shifted from “I” to “we”. We broke that association of we are bound to a life of commiseration because Grayson’s different and it all started with a single stitch. 

If you liked Carol’s story and would like to meet other families who are at the center of a connected community, let us know!

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

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

Rosalyn and Mary Beth share their story of how they came to see the importance of living in the moment.

Here's the story of Rosalyn and Mary Beth's project together, done in collaboration with Starfire. Rosalyn and Mary Beth came with their team from Envision to learn from Starfire how to build connections through creative projects in the community.

Thanks to funding from the Greater Cincinnati Foundation

TRANSCRIPT:

Rosalyn: It doesn’t matter what color you is God made you in a different way. 

Mary Beth: Or what country you’re from, or what country you’re from or what religion you are. Everybody’s different.  

Rosalyn: Yeah 

Mary Beth: We’re all alike, disabilities, colors, skin, we’re all God’s children. Ros and I were involved in the community inclusion project which was a great chance to give Ros $250 to throw a party. We went to the west side brewery & company. And what we did, Ros invited a lot of people, she’s a library girl, so all her library friends were invited. I invited some of my friends and my family. We’re getting ready and a quarter after seven we’re thinking what’re we supposed to do. The party was supposed to start at seven, we didn’t know if people were going to show up. It was the coldest day of the year, and it was snowing and what we learned, what I learned is to live in the moment. So in that moment what we did was we decided we’re in this room, they have Pandora, we decided to dance instead of be nervous and wait for people to show up. Didn’t we Ros? 

 Rosalyn: Yeah we danced.  

Mary Beth: So anyway, a quarter after seven I see my daughter coming in with the Skyline dip and everyone started coming. So Ros was on. 

Rosalyn: Yeah.  

Mary Beth: Which what did you do then? 

Rosalyn: I said hi to them, hi. And I hugged them, I missed you and happy to see them.  

Mary Beth: And these are people she sees periodically but maybe once a year. The cool part is one person, was specifically Ros’ friend. And she was from the library and she came out on that cold night and Ros was so pleased to see that she showed up.  

Rosalyn: Yeah *laughter* Yeah.  

Mary Beth: it made her feel really good especially to see Laura.  

Rosalyn: We know each other, a long time ago. And I said hi to her.  

Mary Beth: About five years you’ve known her.  

Rosalyn: Yeah I’ve known her five years.   

Mary Beth: Through this experience we’ve learned, like I said, live in the moment. If one person showed up we still could have had fun. We could have gone to the bar and invited people to come in. There’s always a way. You know not to get upset or nervous about things that we don’t have any control over because things like that always happen. Ros through this, one of my friends has invited her to do lunch so they are going to go to lunch together. She now has a gift, her plaque to give to her friend Suzy whose her best friend at the library who couldn’t make It that night. One other thing, all her friends got to get together and meet each other and that was the positive.  

Rosalyn: Yeah we talking, about different stuff.  

Mary Beth: To sum it up I would say back to the live in the moment thing, not to be nervous or stressed, take a deep breathe. We can’t change things how they’re going to turn out and things always work out. It’s changed Ros and I were she’s a lot more friendly, of course she’s very friendly anyway, but she feels loved, that’s the main thing. She knows she's loved, and it was her gift to the community. She picked for those plaques to be made which was a beautiful thing. Right Ros? 

Rosalyn: Yes, yes. 

Mary Beth: Ok that’s pretty much it.  

Audience: Thank you.

Rosalyn: You’re welcome. 

BYOB(reakfast) Storytelling Event is sponsored by Contemporary Cabinetry East