Q&A: Megan Hess walks the halls of UHCL with pride

Contributed by: Jennifer Nease, education major. 

CORRECTION: 5/13/18 – The age Megan Hess was diagnosed with Wolfram Syndrome was 14, not 10-years-old as originally published.

UPDATE: 5/20/18 – The question and response regarding friends outside of immediate family was added.

Megan Hess, 38, was diagnosed with Wolfram Syndrome at 14-years-old, but that does not keep her from walking the halls of UHCL.

Q: What level of education are you currently in and do you have a professional goal you are working toward?

A: I’m in college. And yes I have a professional goal I’m working toward. Professional goal is to be a Diabetes counselor/educator.

Q: At what age were you evaluated for a disability and who evaluated or assessed you?

A: I was never really evaluated. Honestly, I just noticed my vision was getting worse myself in 1989-1990 when I was 10 and my hearing started going in 1994. So, you know, as far as what I could have – as far as whether it was a retinal degenerative disease or something like that [the name of the evaluator was] Joel Silverberg. He was in Baton Rouge, Louisiana.

Q: Would you tell me briefly what it is that you have been diagnosed with?

A: Wolfram syndrome is what I’ve been diagnosed with. It’s a continuous degeneration and deterioration of vision and hearing that occurs only one in every 1,200 diabetics. And I was one of the lucky ones. They thought it was originally the Usher syndrome…but when that came back negative he tested me for Wolfram Syndrome as there was a case just diagnosed.

Q: Do you feel that you understand your exceptionality to the fullest?

A: Yes.

Q: Do you have at least one person whom you consider to be a friend outside of your immediate family?

 Absolutely. More than one. As far as [my] understanding the exceptionality, I would say 98 percent.

Q: Do you feel more comfortable answering questions about your exceptionality by a person whom you are familiar with verses a stranger or doctor whom you have not met before?

A: It doesn’t matter. I’m comfortable with either. In fact, there have been a couple people in my history class, for example, …there’s a girl that sits to the left of me and she asks, ‘If you don’t mind, what exactly can you see?’ It’s just a question. I don’t mind if people ask me. Otherwise, they’ll assume you’re fully sighted or completely blind. Personally, I don’t volunteer that I’m hearing impaired. If I can’t hear them [people] and if they stick around, I’ll say, ‘I’m sorry what did you say? I’m hearing impaired.’ Give me the benefit of the doubt.

Q: Do you feel that others around you including family fully understand your exceptionality?

A:  As far as others around me, I’d say, some of them. Some of them possibly. My family – somewhat, but I think they somewhat do, but they doubt it also.

Q:  Are you aware of the employment statistics involving persons of disability, and what are you aware of?

A: Yes. That it’s very low. Because to employers, we [persons of disability] are a liability. Say I run into a water fountain and I get hurt, I can file worker’s comp. I’ve had two jobs and they hired visually impaired persons already so I knew it was a good shot to get a job there and I did, but the first couple years I was working in Omaha at the Marriott International, a visually impaired employee ran into an ice machine and hurt her chin.  She sued them and got money, but me, I’m not that way. If it was, in fact, an accident…if I knew I swung my cane and…benefit of the doubt if I knew it was my fault I wouldn’t have sued.

Q: What would you say has been a guiding light to your success in school?

A: God.

Q: If there was a networking group of persons who shared similar experiences would you be interested?

A: Yes. I’d be interested. I belonged to a blind support group. When I lived up in Memorial Park area, I belonged to them. I didn’t go every week because I didn’t have every Thursday available. I wasn’t fully visually impaired at the time. I wouldn’t say it was the ‘funnest’ thing, but I wouldn’t say, ‘don’t go.’

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Also published on Medium.