Own the Equinox – Day Nine

It’s been nine days of so many people with Usher Syndrome doing amazing things to raise awareness for the upcoming World Usher Syndrome Awareness Day on September 19th! The Usher Syndrome Coalition Blog has been highlighting a different person each day to share their stories. If I can’t inspire you to be an advocate for the deaf-blind with Usher Syndrome, maybe some of them can.

From my personal achievements, today I logged in another three miles, which combined with my Monday three miles, I’m sitting at six miles for the week.  Yes, I WOULD have run yesterday, but morning schedule would not accommodate. Plus, it’s still blazing hot here in Utah for late afternoon runs. Yes, I did get lazy over the weekend and skipped my Saturday and Sunday runs. I’ll most likely have to skip my run tomorrow as well. An appointment with an audiologist in the morning to get my hearing aids tuned will do that to you.

weber state

While I’m on the topic of tomorrow, I might as well get some giddyness out and talk about going back to school.  I was accepted into the Weber State University MBA program to get a Contract Management Certificate.  I’ll be taking three credits until late October and then another three credits to close out the year.  The goal is to have the last two classes for the certificate completed in 2016 when they are offered.

I’ve been wanting to make a major career change for a long time now.  Trying to find a field that fits well with having this disease is almost in a way next to impossible. I have no idea when or even if I will be fully deaf-blind in the next five, ten or twenty years. You can’t plan a career around that, especially with your family looking at you to be the one supporting the household. So, I went with something that I’ve always loved to do, which is business. The reason I chose this Contract Management Program being offered by Weber State is because after looking around me, I think the program gives me the best tools to find a position that will provide for my family and give us stability.  I’ve seen statistics that show that 80% of people who are deaf-blind are unemployed. From the amount of adults that I’ve met with Usher Syndrome, I’d say from who I know personally, it’s about 50% in my known group.  Still, that’s a high number.  From talking to people and personal experience, finding a new job with our disease is a monumental task in itself.  There are very, very few workplaces beyond a state or federal agency, (typically one that deals with disabled people) that is very consistent with hiring deaf-blind or a word I hate to be associated with, “disabled” (I’ll write about that soon). We spend our whole lives building our skill-set, and educational knowledge only to find ourselves looking at job positions that make you feel vastly overqualified and underutilized. I or anybody else should never have to take a pay-cut, or take a position that is beneath our skill-set just to have a job that can be more accommodating to this disease. To me, it sometimes feels like you either need to be employed at a job before your diagnoses and try to hold onto it at all costs. Regardless of how it could negatively impact you in the long run. Cross your fingers that your employer is compassionate and finds ways to accommodate you while still giving you active roles to grow in the field. If we have to dive into the job market we sometimes have to question ourselves in every job interview if you should tell them about your disease or not. I know where I want to be, and it’s time to take that leap of faith to get there.

I’m trying what’s best for me. I’m going back to school, getting this certificate and pursuing my career by hopefully getting a job on a federal level as a Contract Specialist or wherever this certificate takes me. It’s easy to let this disease keep you from doing the things you are passionate about.  Right now, I’m passionate about my family, my education, being an Usher Syndrome advocate and my training.  Hopefully I’ll be adding my job to that list soon, because what I’m doing now just isn’t cutting it for me.

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