So tell us, what’s your story? My name is Lara Bertetto-Bauman. I am 37 years old and have a form of Muscular Dystrophy called Spinal Muscular Atrophy, Type II. It is a neuromuscular disease that is progressive. I had a total spinal fusion with Harrington rods when I was 7 and have used a wheelchair since. My life was/has been/is normal, for the most part.
I have multiple college degrees but am currently unemployed because I have lost a lot of my endurance after having a serious round with bi-lateral pneumonia with a collapsed lung last September. THAT was fun. The biggest accomplishment of my life is marrying my wonderful, patient, husband with the most beautiful soul I have ever seen. I am so lucky. I work from home as an Independent Consultant with JewelScent and do well with that so that’s something, right?…….lol. How do you describe the city/town in which you live in with regard to accessibility for the physically disabled community? I live in Carbondale, Illinois. It is the home of Southern Illinois University and, at one time, was touted as one of the most wheelchair accessible universities in the U.S. at the present time, I find that somewhat of a joke. I presume this title came from an era when curb cut-outs were considered “forward thinking” and we do have many of those. Overall, yes, the community is accessible. The college campus is very well equipped for those who use wheelchairs. We do have a bus system that provides a bus or two with a lift but, at my last check, that bus does not run during the school’s breaks – Thanksgiving, Christmas and Spring Break – and has very limited routes during the summer.
Without the University I fear that we would be just another speck on the map in southern Illinois with very little accessibility.
Our area is very well-known for the Shawnee National Park areas where hiking, rock climbing and camping are popular things to do. There ARE trails that have been made accessible but it feels a little fake for being out in nature, if that makes sense. We have a lot of naturally carved out waterfalls, spillways, bluffs and other “outdoorsy” stuff that I wish I were able to do. Otherwise, our town is much like any other small city. As a person with a physical disability, what’s your biggest peeve from the non- disabled community? Oh gosh……my BIGGEST peeve? Well, that’d have to be when people lean over and talk loudly AT me. And slowly. Ummm, it’s my LEGS that don’t work. What was the best part of your childhood? The best part was just being a kid. You know….having the ability to be carefree….being with your best friend(s) playing in the pool in summer, eating plates of your friend’s mom’s awesome nachos, digging in the dirt and playing with earthworms and snails….I could go on and on. What was the worse part? The worst part was dealing with my parents’ divorce. It was a nasty divorce, well known in the area….I was a pawn – in and out of courthouses and lawyers’ offices – sometimes lying to avoid guilt from one parent; sometimes not to stay on the good side of the other. Did it have anything to do with your physical disability? It had NOTHING to do with my disability. They had their own issues. If you have a sibling or two hanging around, would you say that your physical disability had an impact on your relationship with them? I am an only child. At the time, I thought being the only one was the best way to be but that is a child’s way of thinking, I think. I wish I had had siblings. What’s your greatest strength? My greatest strength is the power of word. I have always had a way with words – big, long-syllabled words that make people take notice and listen. Words that demonstrate my intelligence and ability to communicate tactfully. How are you using it to make your life better? My words make my life better every day by allowing me to communicate clearly with others and to better understand where others are coming from. People are more likely to talk to, and confide in others who speak as if they know what they are talking about. It’s also a great way to find out information from others – by interjecting a conversation using bigger words to throw them off and give out maybe more information than they would have before. I should’ve been a lawyer. What’s your greatest weakness? How are you working on improving it? My greatest weakness is my pessimism. I hate that I always see the glass half-empty or compare things that I can’t do or have to to others. I try to correct myself every time I KNOW I’m being negative by stopping and asking myself what IS positive about the situation? I always make sure that I write down 5 things/people/experiences I am grateful for that day. Do you have a role model who lives or lived with a physical disability? If so, who was it? What impact did this person have on you? I do not. I wasn’t exposed to many physically disabled people growing up so I never really looked to anyone, specifically, with a disability as a mentor or role model. I admire anyone who has a physical disability who has been able to overcome the stigma of having a disability and is able to show that we, too, can lead successful, happy lives. What’s your thought process when obstacles get in your way? In general, I just get pissed off, first, because many of my obstacles wouldn’t BE obstacles if I had normal use of my body. I usually just have to step back and think logically. For me, that means figuring out what I WANT, then the quickest way to get it and then, being realistic about how to get past said obstacle, where to begin and go from there! What do you do for fun? Tell us what a typical day in your life is like. I do a lot of reading. I was always that kid who took a book with her everywhere and could be found reading when everyone else was focused on something else. My typical day is pretty quiet. My husband works a 3rd shift at our local hospital so on those days I try to keep the house quiet so he can sleep. I work as an Independent Consultant for JewelScent so a lot of my time is taken up by working with team members and talking to others about our products…..working on promoting the business, getting creative with advertising on social media. I also have two PAs so juggling their schedules and filling out paperwork happens quite often, too. What long-term goals are you working on achieving? If you are not working on them, is there a reason? My most important long-term goal is working on creating a second income for me and my husband. I’m not able to work a “traditional” job anymore so I work from home. (I won’t get into the logistics of how having a disability and being married affects your household income at the moment.) I’ve also always wanted to write a book. That always seems to be one of my long-term “goals” but I get all tangled up in characters, story lines, etc…. I have no excuse for NOT doing it. What are your favorite websites for people with physical disabilities? Honestly, I do not. I don’t go looking for disability specific websites often. (Well you got us at Audacitymagazine.com! ) You can find me mostly on Facebook. I am Lara Bertetto-Bauman, have a business page JewelScent by Lara and run a group for my business, as well. I don’t Tweet. Guilty. I can’t limit my words to 140 characters. I can be found posting way too many pictures of my dogs on Instagram come check me out here for my JewelScent page. Feel free to contact me anytime if you’d like to know more!