Disability · emotions · facial difference · Family · Medical/Dental · Mental Health · thoughts · Work and Job · Writing

Disability and Advocacy

Yesterday, Monday, March 8th, I spoke on a panel about disability and advocacy work. The working copy of my remarks appears below. I plan on editing for spelling errors, grammar, typos, and flow tonight or tomorrow. In the meanwhile, enjoy the spirit of my words.

Here I am surrounded by doctors yet again. 

I was born this way, I was born to share my story with you. I was born to be an advocate. 

 I was born to make lives easier for those of us that struggle daily in disabled bodies. 

I don’t want anyone to feel like they are  alone. 

My  name is kara. My story is my super power. Born with bilateral cleft lip and palate on July 15, 1979, i found myself in my first year of life, enduring 5 surgeries to repair it and to keep my ears, nose, and throat clear. I was fed by dropper and tubes with formula, not at my mothers breast. I would go on to have another 15-20 more procedures through present day. My body continues to erode from the numerous surgeries and other medical interventions necessary to keep me alive, and well. I have difficulty hearing, tinnitus, extensive dental prosthetics, mental health issues galore, stomach trouble, and neck and chronic body pain that I must manage with on a daily basis. A veritable one-woman band of disability. Yet for many years i denied that identity.

It took until age to realize my story was my strength, when i wrote an essay for our local craniofacial community’s nonprofit, the Foundation for Faces of Children. I was honest in it. I wrote about beauty not being skin deep, but something we hold in my hearts and minds. In writing I could share and be open. In person it took a lot longer or did not happen at all. The reasons are many and varied. 1) I am child of the 1980s. We just wanted to blend in. IF you were weird, different, or whined about your troubles that was not okay. 2) I pushed stuff under the rug because to relive the trauma of the surgeries, medical appointments, bullying at school, and questions about what was wrong with my lip and why i sounded funny was just too much. Emotions were something I had a lot of and felt intensely. I always turned to my journals, to the written word to process everything. And while the writing helped, I didn’t take these words into my heart. That would be something that wouldn’t happen until a few years ago. 

Back then i knew there had to be more that I could do, right? 

So I attended some FFC nonprofit events with my family, went to annual walks, raised money, but it wasn’t enough for me. I wrote some more, got published a bit more.. Then in 2006, I was asked to join the board of directors of the foundation for faces of children. There I was able to enhance our programs for kids, so that kids like me could see that other people lived with the same conditions they did. Growing up, I was the only one I knew with clefting, other than the families in the hospital waiting rooms. Teens and young adults have a tough time, so from 2008- 2009, i worked to create a teen and young adult ½ day symposium which brought together major medical professionals in Boston and the patients they treat. It was a such a smashing success that I think I got some national attention in the craniofacial world. This fame has not been confirmed or denied. Just a year later, in 2010 Children’s Craniofacial Association came knocking wondering if i would run a symposium session on mental health and being a teen/young adult with a facial difference.  At the Boston Annual Retreat and Educational Symposium, all these famous Boston Children’s Hospital doctors, my doctors, were on the bill that day, and then little ole me. I would present again at CCA’s 2013 Annual Retreat in Orlando, Florida.  There I met the woman who would be my boss in 2016.  In 2016, I wrote for and edited the blog for CCA and then eventually would be offered the Marketing and Communications coordinator position.  All the while I hosted sporting events for the Foundation for Faces of Children after having stepped down from the board. It is amazing to see kids come together at a minor league baseball game, or college hockey arena and, realize they are not alone with their facial differences. This was an experience I never had, it is a gift that both organizations give to its families through our service and programming. Everyone from the kids to the families, just “get it.” I think the students, faculty and staff at BUST feel the same way about me, too. They know I just “get it” and many gravitated toward me over my years of service to the school. I helped students at STH, masters doctoral and even undergrads navigate BU’s system to get their needs met. It was just “what I did.” people come to me with gripes and complaints and I help fix them. 

Fast forward to 2018 — another light bulb year. One of the greatest classes to grace the halls of this institution descended upon the school. There was something about them. Instantly I knew them, i felt them, i believed in them. I think this is what love at first sight must feel like. They were raw, honest, kind, queer, diverse, black, brown, trans, disabled, humans. People, My kind of people. They embraced who they were in a way I never could when I was in my 20s and 30s. They were vulnerable and wanted to find the closest rooftop and scream from the top of their lungs who they were and what they stood for. This was different. These humans came into my life at just the right time, and when that happens it is truly magical. I realized I needed to share my story with them and at Boston University. They would be my teachers. They would make me comfortable enough to profess and confess my truth at Boston University, too.  I tried to keep my advocacy work separate from my work life. These students would help me become my whole self at work for the first time ever. All of this occurred as my hearing worsened and worsened, requiring hearing aids in both ears. Our BU STH students made me feel comfortable during this transition. 

Those special students were my friends in the cross disability club. 

The cross disability club was founded in my archives reading room, after i hosted a hebrew bible study session early in 2018 fall semester. OF all the rooms in all the places, you chose mine, or I chose you for mine because the library conference room was booked. Shortly after, We had meetings, events, and more. The students drove everything. I just oriented them to all things BU, STH, logistically. Logistics I was good at that. We ran events, worship services and more. Even invited others from other schools, and went to other events on campus, too. I was meeting new people, and making connections. Some of them thought I had something going, something promising in the worK i was doing with these students. 

At the beginning of the next academic year, 2019., I was asked by one of these new colleague friends to submit a letter of intent for the newly created Faculty and Staff Community Networks an initiative started by the office Diversity and Inclusion. I was quickly accepted as chair, and we began our work shortly before the COVID19 pandemic began. Our goal is to to empower faculty and staff to feel as safe and whole as i do here on campus. And in turn to make things more accessible for the students, too. A trickle down effect but only in the best ways possible. Then maybe BU would be a more welcoming place for individuals with disabilities that worked here. I had my trouble with accommodations, FMLA, being misunderstood, and other issues around my own employment which I overcame, but now I had the opportunity to help others avoid these potential pitfalls, and for them to feel at home at BU, too. 

In doing this work, I realized that it is not important to disclose. I don’t care how you want to identify yourself. I know I feel more confident now more than ever saying I am disabled because of the friends i have in the  cross disability club and SAFEBUDS, the name we gave to our faculty and staff community network.  If you are not ready that is okay. Come to our events anyway. Everyone needs a leg up, a lift to be successful. My parents were always there for me, and still are, but not everyone has that support system. To be heard, to be understood, to be seen is everything. So, please, I invite you to come join us, or to sit down with me sometime and have a conversation about how we can make BU your home, too. 

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