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When I was 13, I was diagnosed with Stargardt Disease (SD) a genetically based macular degenerative eye disease impacting central vision. Currently, there exists no treatment. Although SD affects everyone differently, most people experience trouble with facial recognition, fine details on objects, reading small print, watching TV from afar. While my sight ability adheres to those general examples, my capacity to function independently is high without employing mobility assisted devices such as a white cane or guide dog. Thus, the term “Invisibly Disabled” applies when impairment is not obvious.
This story begins in 1988. Big Hair was highly prized and Big Corporation roamed Earth freely. Big Boss summoned me to his office. He was a Division VP, Director of Import Merchandising of a retailing giant. Putting on my double breasted suit jacket I walked the hallway looking down to ensure my suit skirt was tidy, stockings pristine, black pumps shiny. With trepidation I entered his office, settled into the big ominous chair all the while maintaining my composure highlighted with a broad smile. Big Boss looked unusually grim and serious. Oh my goodness I thought. Am I getting The Boot? How can this be? Performance reviews have been favorable with, “Exceeds Objectives.” I’ve been praised for great work ethic and building relationships with co-workers and outside vendors.
Remain calm and collected I voiced inside. You will survive. I silently recalled first meting Big Boss when he granted an informational interview. I was a fresh graduate seeking a corporate exec’s wisdom. That informational interview resulted in an on the spot job offer.
So began the conversation. After taking a deep breath, Big Boss told me there was a new position available. He thought my skills, experience and personality were ideally aligned. Ears perking up, lump in my throat fading, palms unclenching, I sat more poised to listen. This sounded like a worthy challenge representing growth potential and much desired career advancement. Big Boss proceeded to outline the new job description. Managing a Customs Import program revolving around the US Caribbean Basin Initiative. The job allowed full autonomy to develop and implement an in house program including support staff. What an exciting opportunity I thought as I nodded with enthusiasm. Woman’s Right advocate Gloria Steinem, my college Commencement speaker, would hopefully be proud. More responsibility and work travel! Hello there Big World!
But then it happened.
Big Boss pulled away from his mahogany desk sitting back in his vintaged chair. Hand resting on chin, looking more stoic than usual, he said, “But the only hesitation I have, a rather large consideration, is your safety. With your visual impairment will you have problems traveling? Will you get lost in airports? Will you be able to see overhead signage? Can you navigate hotels, how about hailing cabs? There’s potential for liability…”
Visual impairment? When diagnosed, I chose to acknowledge disability and form a healthy relationship with my impairment. As a young budding corporate professional entering adulthood, securing employment responsibly was paramount so I thought.
Liability? Intent on laying a solid foundation for a bright future. I developed a risk management plan. The plan called for sharing my impairment and disability with employers. Expectations could be mutually determined, work style and how I functioned was understood and considerations managed accordingly. The plan was simple – Partnership in Communication. At minimal, I wanted colleagues to understand I might hold papers close or use a magnifier to read. Visiting off-site points entailed calling taxi cabs which meant possible extended wait times keeping me out-of-office a few extra minutes.
Despite articulating solutions in hope of neutralizing his concerns, Big Boss could not see. Simple challenges mandated simple solutions. He only envisioned me negotiating with vendors, not airports. How easy to prevent a misguided tour of terminal and tarmacs by merely asking someone for directions I declared. Transport to/from airports and hotels would be like our associates did- in a bright yellow colored taxi. Perfect 20/20 was not mine to claim but I certainly had two fingers to hail cabs and strong vocal cords to ask for help. I’d been flying solo since turning 18. I stressed living smack in the center of a complex urban jungle, commuting on public transport from downtown out to suburbia. I further pointed out that I engaged in the same physical activities that other people engaged in sometimes just having to take different approaches. If anything, varied approaches sharpen creative problem solving and critical thinking skills.
But, I got booted anyway. No, not fired and sent packing out the door, which is most often associated with being booted. Instead, and perhaps, far worse, this boot, The Big Boot, kicked marginalization directly in my path. Upon communicating my impairment had I been placed in a shoe box labeled Disabled! shipped off to be shelved, excluded from future elevation to higher levels no less the next shelf up? Was the packing slip marked, “Visually Impaired! Disabled!” completely absent of line items stating high performer?
Upon communicating my impairment had I been placed in a shoe box labeled Disabled! shipped off to be shelved, excluded from future elevation to higher levels no less the next shelf up?
I kicked myself. What was I thinking sharing my impairment. If I hadn’t addressed it, I would be flying to the Caribbean, ascending the corporate ladder and chipping away at the proverbial glass ceiling.
That night and for a few years thereafter I beat myself up with that boot. My well intended action plan had failed me greatly. My visual impairment was out of my control but the decision to share it was not. How could I have left myself so vulnerable to The Big Boot – pushed aside – excluded from opportunity. Ironic that invisible disability had actually made me invisible to inclusion.
Committed to making the best of my situation and needing a paycheck, I remained with the corporation working on the Caribbean Initiative. But the excitement was beheld from the confines of my four office walls as Project Administrator. Another qualified colleague took pride in getting her passport stamped as overall Lead Project Manager. We shared great program success enjoying many laughable moments assessing our trials and tribulations.
Yet all the while feeling devalued, thoughts of finding a new workplace loomed. But, I was downright scared to leave the comfort of a cocoon albeit a shoebox. A new job meant starting over. Images and thoughts of vacillating back and forth whether to share, (now escalated to divulging a self-perceived shame), exposing my naked self, and having to once again defend capabilities all held me back.
And then it happened.
One day I awoke to find I was not just kicking myself but actually wearing The Big Boot. It was heavy, cumbersome and confining. Despite knowing how grossly misfitting to my core values it was, for a while, I just could not shed that burdensome Big Boot.
Eventual departure finally arrived. Decades of poor leadership, outdated merchandise mix and bad business practices resulted in Big Corporation folding. That forced a new job hunt and once again posed the big question. Is there benefit to revealing an invisible impairment and identify yourself as disabled to anyone, specifically a prospective or current employer? Such simple words with profound complexity. We shall explore this in future writings. I did indeed forge ahead in pursuing a career whose path found me walking both sides.
Is there benefit to revealing an invisible impairment and identify yourself as disabled to anyone, specifically a prospective or current employer?
Today, such overt conversations with BigBoss could not occur without ramifications. Legislation such as Americans With Disabilities Act (ADA) passed in 1990, prevent acts of discrimination. But there are no laws against a belief system infused with stereotypical thoughts fanning marginalization. Changing such embedded attitudes and mindsets is an ongoing evolving narrative that will hopefully, in the near term, speak of inclusion of invisible and physical disability as nothing more than just mainstream.
[Cover photo @ three6ohchris]
Jennifer Wu is third generation American born Chinese. At age 13, she was diagnosed with Stargardt, an inherited macular degenerative eye disease impacting central vision. Graduating from Wheaton (Massachusetts, USA), Little Ivy and former all women’s college, Jennifer pursued an exciting career within mass merchant and luxury brand retailing. As a Product Developer and Marketing Director, Jennifer enjoyed creating complex promotional sales campaigns, events and non-traditional revenue streams.
Mentoring disabled peers and partnering with local museums on making programs more accessible to blind and visually impaired is a primary focus. She also volunteers as a Fine Art Docent and optimizes fundraising efforts through sponsorship marketing for various art venues.
While fashion and aesthetic styling is her innate gift, Jennifer is an ardent student of observation and practitioner of responsible horsemanship. She loves Puccini, audio books and classic cinema. Her true passion however, is traveling to experience local cultures, make meaningful connections and discover the spiritual richness motivating people in their life journey.
Jennifer and her rocket scientist husband reside in the USA.