Living, Learning, and Working With a Disability

By Denise Colaianni posted 15 days ago

  

I recently moderated a panel discussion on overcoming career obstacles with a disability.  One of the young professionals on the panel was my former student, Juliana Fodera.  I have been fortunate to be a part of Juliana’s life as she has grown from an undergraduate to a working professional. I played several roles in Juliana’s life; teacher, faculty adviser, and internship coordinator. Juliana was born with Noonan Syndrome and her path from undergraduate to full-time working professional has been one marked with many interruptions. Through the years Juliana and I have met for coffee, gone for walks, and shared the successes and challenges of living and working with a disability. 

While driving back and forth to a conference with Juliana I asked her if I could interview her for this blog and she graciously agreed.  

Denise:  Juliana can you briefly describe what Noonan Syndrome is?

Juliana: Noonan Syndrome is a rare genetic disorder found in 1 in 1,000 to 2,500 births.  Noonan Syndrome affects multiple systems in the body including facial features, stature, cardiac, sensory, gastrointestinal, hematological, chronic pain, neurological, lymphatic, musculoskeletal, and urological.

Noonan Syndrome has impacted all aspects of my life and body, but I have not allowed it to dominate my existence.  I have to coordinate scheduling my medical appointments, sometimes, even surgeries, with daily life responsibilities. With Noonan Syndrome, things happen unexpectedly, such as the need for major surgery.  So far, I have endured 27 surgeries.  It has taught me to stay present, while witnessing the mystery of my body and giving it what it needs. I have adapted to life stress, while maintaining my health and well-being.  The surgeries, procedures and medical tests are a part of my life path.  Noonan Syndrome has taught me to be responsible from a very early age and to advocate for myself, while being a team player with countless medical professionals.

Denise:  Can you give me a few examples of how having a disability has impacted your life as a student and your life as a young professional?

Juliana: I have had some physical limitation my whole life, so I was not able to participate in sports in while I was in college.  That did not hold me back from participating in other campus organizations, as well as other extracurricular activities.  I was a member of the Health Promotion and Exercise Science Club at WCSU (Western Connecticut State University).  We worked together to create some on-campus one- session health and wellness activities.  Even though I am restricted from doing any strenuous lifting, I am still physically active.  I couldn't go out and party with my peers, but I still managed to socialize in other ways.  I found that my friends were happy to just have me there, hanging out. I focused on studying, spending time in the library, cracking down on the books.  I needed to have extra help here and there, but still managed to keep up with my classes.  I don't drive, so I have to navigate transportation to and from work. This went also for my college internships as well. I was lucky to get work/study and worked as a desk worker at WCSU. In my senior year, I participated in an internship with Regional Hospice. This required me to navigate transportation. However, due to being interrupted for senior internship by having major surgery, I needed to put a halt on my semester. I was able to coordinate finishing out my internship on campus at the substance abuse counseling center.  Living with Noonan's has been a little bit of a game of roulette sometimes—the genetic disorder charts its own course.  I find that I am very driven to live my life as full as possible and be as active and engaged as I possibly can be.

In terms of it affecting my life as a young professional, finding a job due to the recession and what was available was difficult. Since I don't drive, I had to stay local. I managed to work from home due to being in between major surgeries.  I worked as a virtual personal assistant and the few people I worked for, worked with me.  

I currently work full time with the Prospector Theater in Ridgefield, Connecticut. I have given them some insight into Noonan Syndrome and how much health maintenance it requires. The team I work with is a group of supportive individuals who have no trouble raising the bar in ways they know I can reach. In turn, this has increased my work performance at a higher level, and I am reaching the goals that I need to and beyond.  Overall, I am an active young professional who manages to take care of their health and well-being. I have been able to apply my life skills to my job. 

Denise:  What advice would you give students and young professionals to help them navigate into the work world?

Juliana: I advise students to take advantage of any opportunity that comes their way to participate in work/study, internships, apprenticeships—any work experience possible. This will help build confidence, help give experience in becoming a professional, and help you to see what you are interested in.  It is also great for resume building and to be out in the world.  You may be surprised about what you learn about yourself when starting to work.

Denise:  What advice would you give to employers to increase their efficacy in working with people with disabilities?

Juliana:  Have patience with potential employees. Many people with disabilities have life experience that the average person does not. My parents used to joke that I was six going on 40 because I learned how to interface with adults at such an early age.  Look at potential employees as a whole and you may find they can offer something up that you never deemed imaginable.  Adults with disabilities want to work just like everyone else—this creates drive.  That drive, in turn, can create a valuable work effort.

Denise: Are you disappointed that you haven’t been able to find the job you were preparing for? Do you still want to work in community health?

Juliana: The Prospector Theater where I work is a nonprofit, 501(c)(3) and our mission is "to provide meaningful employment to adults with disabilities in a competitive and integrative work environment through the operation of a first run movie theater" (Prospector Theater, (2019), Mission Statement. http://www.prospectortheater.org/mission).  We are providing a service extremely important to a community that needs inclusion. This is a part of community health, since we know being gainfully employed is crucial to one's overall health and well-being. It is important to psychological, mental, and social health, in that it helps a person become connected with a community and make friends. Since I have been with the Prospector, I have found that connecting with my peers, as well as the community, I feel more empowered.  Physically, I am more active than I ever have been before, and my doctors have attributed it to taking care of myself and having an active professional life.  Financially, I am earning my way toward becoming more independent.  Spiritually, I am part of something much bigger than myself.

One of the many departments I work in assists with fundraising, research, data entry, and record keeping.  I am applying my health administration skills that I acquired while studying community health.

 Being at the Prospector, I am a part of the nonprofit and community health world.  We are providing society with the education that adults with disabilities are just as capable of working like anyone else.  The organization is also being exposed to diverse disabilities from our prospects to our patrons.  We are educating society with the tools they need to see the possibilities in everyone. I have been able to act as a Noonan Syndrome educator to my peers, as well as teaching them how to advocate for themselves when necessary. 

At heart, I am a community health and wellness educator.  My job has just shape-shifted in different ways which will eventually lead me to my master’s degree in public health.

Denise: My thanks to Juliana for sharing her experience with us. 

* Juliana Fodera graduated from WCSU in 2007 with her degree in community health. While she was born with Noonan Syndrome, it has not stopped her from pursuing an education as well as a career in the nonprofit world. She currently works at the Prospector Theater which has given her a valuable work experience.

The Prospector Theater is a 501(c)(3) nonprofit dedicated to providing meaningful employment to adults with disabilities through the operation of a premium, first-run movie theater.

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