Sean Boyle

It’s a lot to take in when a doctor informs you that you have – in his opinion – an inoperable tumor in your brainstem and six months to live.

Fortunately, that doctor turned out to be wrong; I had a second opinion a few days later that showed it was merely a cluster of cells that was bleeding in said-brainstem (Also bad, but not deadly). Looking back on it though, had the doc been right, I would have spent nearly 2 percent of my days left on Earth sulking, not processing; not doing what I was passionate about. Yes, I was in shock. It is understandable that someone might just want to disappear. But I’m not proud of my reaction to the news. I’d like to think I’d celebrate the life I have left if faced with a similar situation again.

Fast-forward through 3 weeks of trying not to think about my chances of dying from anesthesia. I ended up getting my brainstem jabbed at for about 6 or 7 hours; some people call it surgery. Due to this knife fight between my brain and the team of medical professionals, I have nerve damage through half of my body. I have vision issues in my left eye, slight paralysis in my left foot, and my personal favorite: balance and coordination issues.

I get to say I’m a Paralympian and a member of the US Soccer team. Sean Boyle Paralympic Athlete (Soccer), US Soccer

Until the day of my diagnosis, I was a goalkeeper on a Division 1 soccer team. I was good, not great, but it was my first love. I spent countless hours avoiding other responsibilities to practice keeping a round ball out of rectangle. My diagnosis didn’t just stall my playing days, the medical team that battered my brainstem also gave a kidney shot to my pride, telling me I would never play soccer again. Fortunately, they, too, were wrong.

Within 2 months of surgery (I wasn’t really medically cleared so don’t tell anybody), I was in Atlanta trying-out for the US Para 7-a-side National Team, which would be going to compete in the Rio Paralympic Games that same year. Relearning how to walk turned out to be a breeze compared to keeping the ball out of the rectangle. Jumping and coordinated footwork were purely theoretical for me. But it got easier, and easier, and at this point I’m lucky enough for US Soccer to fly me around the world and pay me to protect the rectangle for the country. I get to say I’m a Paralympian and a member of the US Soccer team.

Outside of my time with US Soccer, I also had to figure out my life again. I decided that education was going to be my saving grace. I moved out and found myself living in Boston, attending Northeastern University. It turns out, when I didn’t have to mold my body for 6 hours a day with the help of a tiny many who only spoke in profanities, I have the energy to follow my intellectual passions. I am deeply invested in working in financial inclusion and payments, ensuring financial access for all.

Heading into graduation in May 2020, I have already lined up an amazing opportunity to work for Mastercard post-graduation.

Finally, we get to the point of the article, #Lookcloser. When somebody looks at me, they don’t see disability, but hey—sometimes I can’t see them at all (that’s a vision joke, for folks keeping score at home). I’m incredibly privileged in the sense that all of my impairments are invisible, and are triggered by physical stress. I struggle on my own terms and don’t have to deal with any preconceived stigmas surrounding my disability unless I openly disclose.

But not everybody has the same opportunity to read the room and decide their path like I do. When you hear the campaign #Lookcloser, take my story and understand that 1. It could be anybody that struggles with a disability, and 2. Anybody that struggles with a disability probably has a fantastic story with amazing accomplishments attached to it.

 

Author’s note: If you would like to discuss any element of the program, or if you know a soccer player who has Cerebral Palsy, had a Stroke or a Traumatic Brian injury who’d like to play for the US Para 7-a-side National Team, contact head coach Stuart Sharp at ssharp@ussoccer.org

Maureen Pranghofer

People talk about the things, especially websites, that aren’t accessible. They wish it was easier to get a job when you have a disability. But we have come along way from where we were.

A snapshot of where we were is clearly visible for those people, like me, who are in their mid to late 60’s and older. It looked then like this back then.

I had an excellent resume with good clinical and intern experience in my chosen field of music therapy. But when my dog guide and I walked into a place that was hiring, the gentleman who spoke to me barely glanced at my resume and said, “How did you get dressed?” All he could see was that I looked nice, and had gotten myself in the door and how I functioned at all as a low vision person was a mystery.

Going for an interview for a social work internship 12 years later when I asked the receptionist if someone could walk me to the office where I needed to go she picked up her phone and said to my potential boss, “There’s a little blind girl here who needs help.” Of course, I didn’t get that internship.

Fast forward to now. WeCo Accessibility Services, who hired me as a Sr. Client Specialist, is just one company who hires professionals with disabilities. The trend is changing, slowly, and companies are seeing the value of hiring disabled workers.

So, if you get discouraged about the state of things, think of how it used to be and how much better it is now. That realization will give all of us the energy to keep moving forward.

Michael Kalberer

You need to inspire people.
Who Better Than Me?
My speaking endeavors have allowed me to inspire professional athletes Wesley Walker and John Tavares of the NHL to help me raise funds for the Foundation Fighting Blindness.

You need to adhere to the Americans with Disabilities Act in the workplace.
Who Better Than Me?
As a New York State Licensed Social Worker (LSW) in my role as a case manager and compliance coordinator at Family and Children’s Association, I assisted individuals living with mental illness to obtain and sustain employment in workplace environments conducive to success.

You need to hire someone who personifies perseverance.
Who Better Than Me?
When I was diagnosed with Retinal Degenerative Disease, a career counselor told me I was “unemployable”. Throughout my search for employment, I ventured to form my own company, Michael J. Kalberer Presents. Now my life’s work is to educate people to maximize their personal strengths and see others as more than their condition. I’ve also written an interdisciplinary curriculum to assist professionals working with people with disabilities in diverse environments.

Who better than me? Michael Kalberer Entrepreneur, Self-employed

You need to instill an attitude of teamwork to increase productivity.
Who Better Than Me?
While I was on the Community Advisory Board of the Hofstra University Healthcare Challenge, I instilled an attitude of collaboration that directly catalyzed the victory during the competition.

You need to hire someone who can show that diversity is a strength and not a weakness.
Who Better Than Me?
I’m Michael J. Kalberer. I transcend cerebral palsy and Leber’s Congenital Amaurosis.

Toni Grundstrom

In 1993, when I graduated with a BA, I planned on getting a job and “changing the world”. That ideology changed quickly as I walked into interviews with a cane. I was asked back for a 2nd interview knowing that I was not going to get the job, employers just wanted to make it look like they did not discriminate against me. I did get a job with the MN State Bar Association where their forward thinking allowed me to telecommute, and I worked there for nine years.

My health changed by then and I was using an electric scooter to go into interviews. Employer’s perception of me as a disabled person had not changed. I viewed myself as a professional with a disability but they continued to see my disability first. I decided to stay home and find income opportunities on the Internet. Then I came across a WeCo Accessibility Services job opportunity. Once hired at their entry level job I was quickly promoted to fill a position my education and experience allowed.

Self confidence, being determined and the ability to be flexible is what I learned over the past 26 years to remain in the workforce as a professional with a disability.

AniYa A.

What would you do if your L.I.F.E was in immense danger daily and you had to choose between living in a dangerous circumstance or live in the streets ALL while being deemed as a Disabled Woman??

My name is AniYa A. and I would like to share my story with you.

In 2016, I was homeless after developing many rare conditions and illnesses in S. FL in 2008!! I was diagnosed with a Pulmonary Embolism, Pitting Edema and Nephrotic Syndrome while in ICU after being misdiagnosed for months. After escaping S. Florida’s warm climate and slow paced lifestyle, I finally took my aunt’s advice to seek a second or third opinion from the NYC doctors!! I followed her advise and headed to Wall Street to get medical attention, the only problem was I had virtually no where to stay. After living in a hospital from three plus months in S. FL. the doctors diagnosed me as being Disabled! While in the ICU, every organ failed and there was nothing that doctors could do for me, they left me to die but right before they could pull the plugs, my eyes opened and it was a miracle because no doctor had ever witnessed anything like it before…

Although, it was nothing short of a miracle, I still had to be rehabilitated from head to toe, being taught how to walk, talk, breathe, eat again!! I battled with one problem after another from 2008 to 2015 when I had to put my foot down and get out of dodge!! I relocated to NYC upon my aunt passing away and felt as though she died so I could live. Within several weeks of getting back to the City I was born in, I started to feel better but experienced homelessness because I was living in very uncomfortable circumstances. I moved into a shelter, where I was transferred constantly from one location to another while following doctors orders and remaining brave through every step of the way.

While in the ICU, every organ failed...but right before they could pull the plugs, my eyes opened and it was a miracle because no doctor had ever witnessed anything like it before... AniYa A. Edutainer, Disabled

Was I depressed on several occasions?? Not really, but I did question God a whole lot.. I often wondered, how could this be my life?? I was a smart girl, graduated high school at sixteen years old, studied abroad in London, England, worked all my life and even helped others..

After receiving a voucher from DHS, I found an amazing apartment, so I thought!! I moved in but within days, there were strange knocks on my door, drug heads asking for me to sell them drugs.. I was baffled, I couldn’t believe my ears, I shortly thereafter got in touch with the local Councilman Ritchie Torres’ office as well as Fernando Cabrera, I reached out to them because I didn’t want to go to the police and get put out of my apartment for complaining!! Ritchie’s office reached out to DA Julie DeLeon and within a few weeks the harassment seemed to stop, then one day, I realized someone had broken into my apartment… I ran out and called the police from my neighbors apartment and waited for the police there.. When they walked through, they said that it was safe to re enter and if I had any other issues to call them!! Two weeks later a man tried to push his way into my home and thankfully my ex was there and he was able to block the mysterious mans entrance.. We both explained that I had no drugs and for him to leave immediately, also we both let him know that he could find drugs in the apartment above me, I only found out about the selling of drugs above me after several months of me living there!!

A week later, the same mystery man came back at 330am on April 11th demanding that I opened the door and if I didn’t he was going to kill me because he had the right apartment and he was going to shoot down the door either way.. I screamed, grabbed both of my cell phones and escaped on the fire escape where I called the police and waited for them to come get me from the second floor as the ladder for the fire escape was non operational!!

I gave up my apartment and have now become homeless all over again and just recently started to rent a room from someone. My heart breaks as I have to keep my stuff in storage and they have been there for over a year already!! Finding a new affordable place to live is the hardest thing ever and I am writing today to share my story because I hope my story gets seen by those who are also hard times.. As I still look for an apartment, I continue to fight!!

I have joined several agencies that are fighting to get more housing for the homeless but also we are working to ensure that elected officials like Mayor Bill de Blasio does not go back on his word and keeps his promises…

Although, I am Never giving up, I need the Mayor to do more and these local leaders too!!!

To those whom are facing hard times, keep your head up ~ NO Matter What ~ Never give up..

If you NEED a friend to listen to your story or NEED help navigating through the madness of trying to get help if you have already gone through a situation like this or similar – email Neighborhood Violence Survivor’s Alliance today at: nvsanyc@gmail.com

Click on this link to watch my story of going from Victim to Victorious:
http://4.nbcny.com/X3FRxn9

Jeanne Donnelly

My whole life my family told me that I always had questions about everything from the time I could speak. They would say my favorite question was “Why?”

I never realized how much the question why would be asked of me and how I would have to ask why to other people when I needed or wanted something.

The questions of why was often asked of my parents, as in “Why would you keep her and not put in her a facility?”

Some people that were religious asked “Do you think your daughter’s afflictions were caused by you and your husband’s sins?”

As I got older and started school most of my teachers, physical therapists and other educational specialists that worked with us would ask us what goal I had for the upcoming year? For the Pt department it was walk on crutches, for the OT departments it was independent living skills, dressing, feeding and personal care in the bathroom. In most cases I heard the same thing: that’s an unrealistic goal for you. Those words never went down easy.

Then I started to ask them why don’t you think I can do this? In most cases, teachers and professionals would give me what I call the “the politically correct answer,” like it would be on unsafe, we don’t want to hurt your feelings, but if we did it for you we have to do it everyone.
Most of the if I had a good therapist or a good teacher I would explain my point of view and most of time they would understand.
Those people that did not understand I would have worked ten times harder to prove them wrong.

Those people that did not understand I would have worked ten times harder to prove them wrong. Jeanne Donnelly Public Speaker, Self-Employed

This was especially true when I wanted to enter my public high school. People thought I was nuts. The question of why was on everybody’s lips. Why did I want to do this now? Why wasn’t I happy with Henry Viscardi [school]? Was I being Bullied? My mom questioned it  alot because we had a neighbor that had the personality of Mrs. Kravaets from Bewitched. She thought she knew something about everyone, but as it turns out, she did not know anything about anyone.

She would tell my mom how bad the kids were and there was racial tension and a lot of other stuff so my mom was nervous.

My dad was nervous too. Even though he never said it directly I kind of knew it anyway.

A few months before I left my private school my Dad was at my school every other week asking everyone on the staff what was wrong and what should he do to rectify the situation?

Truth be told there was nothing to fix. The real reason was because so many people told me that I would not be able to manage or deal with real life issues just yet. I knew that was not true because in my opinion the kids that went to Henry Viscardi dealt with real life with more dignity and respect then any group of people I know. When I was young we lost students who succumbed to their disabilities at an early age. I lost friends at fifteen or sixteen and watched kids get sick and weak, but saw them trudge though their life as best they can even though they know they their untimely death was drawing near. If that is not dealing with real life issues I don’t what is.

The big question I had for everyone that tried to dissuade me was, “How can we make this possible and what can I do to help you help me get through this process?”

Yes there were bad days that I questioned why things happened all throughout my life. I had really spectacular moments in my life that I would not trade for anything. I could ask the question why all day long about things that happened to me and my family and my friends. But the best way to move forward is to ask how can I make my situation better or how can I deal with the situation as it is?

At the end of the day it does not matter why things happen but how you deal with a situation once they happen. So think about how you define your “why” and then ask what you can do to make it possible.

Laura Mayer

I was diagnosed at the age of 15 with a progressive degenerative neurological disease. The disease is in my spinal cord (grey matter) and affects motoric functioning. I was told by the doctor I would lose a millimeter a month of muscle strength, be in a wheelchair at 25 and die of respiratory complications at 40. I did not heed to this death sentence.

I was given a gift when I applied to NYU. The interviewer, after hearing and seeing my hands, said I have a choice. I can make it an asset or a limitation. I made it an asset.

I graduated NYU with both a Bachelors’s and an Advanced Masters Degree in Occupational Therapy. I was a licensed OT in the field of adult psychiatry (Staff Therapist-Director) and sensory integration in the classroom. I underwent 15 reconstructive tendon transfers and bone fusions while working for 25 years. I never said no.

The most difficult part was the lack of emotional acknowledgment/encouragement I felt from my parents which is fundamental and oh so critical.

The interviewer, after hearing and seeing my hands, said I have a choice. I can make it an asset or a limitation. I made it an asset. Laura Mayer Integrative Therapist, Intuitive, Author, self-employed

Because of that, I always felt like damaged merchandise, even with my professional successes.

How did this disabling disease impact my career? It made me show up as I was, no matter what was happening to me physically or how I felt emotionally. Being an OT, which is all about helping others to function, was the perfect mirror. In saying that, I couldn’t hide. The greatest part of my own story–I believe it helps others not to hide. Becoming the professional I was, although difficult and exhausting at times, was the greatest thing I have ever done. It helped me to love and honor myself as the AbledDisabled adult that I was. I no longer practice in the field of OT because it’s too physically challenging.

Today, I use my expertise and awareness to assist others to become visible and love themselves for who they are–no matter what the ‘dis’ is. I am most grateful for that amazing man who said over 40 years ago, it was ‘my choice.’

Lucy Del Gaudio

I recently started a new position as a Program Manager with Prudential Pathways Prudential Advisors Onsite Program (PAO) – a series of financial wellness education on-site seminars — and it’s been incredibly rewarding. My primary role is to aid the PAO program in different locations.  I assist with scheduling, as well as marketing and managing the Prudential Pathway series and seminars offered to Prudential employees.

With my disability, sometimes, I feel like a rock star, confident and well spoken.  Other times, I am riddled by self-doubt and anxiety.  At my worst, depression can set in and I disconnect.  My PTSD was diagnosed late in life.  I joined the US Army after my father passed away.  My plan was to make the military a career, but after experiencing military sexual trauma, I made the decision to end my Active status after four years and become an Army reservist.  While I sought assistance from the VA, I didn’t feel that they had the proper tools to help me.  I eventually received help in other avenues and controlled my anxiety and depression with several medications.  Then, while in a previous role here at Prudential, I my trauma was triggered at work.  I was hospitalized and diagnosed with PTSD.  Afterwards, I totally felt like I had a “black cloud” over me. Without feeling I had the opportunity to explain my diagnosis, and how sometimes my interactions might seem off, work relationships became difficult.

It’s difficult to hide your feelings at times but knowing that I’m entering a positive work environment is a breath of fresh air. Lucy Del Gaudio Program Manager, PAO Prudential Pathways, Prudential Financial

I sought the assistance of Prudential Health and Wellness, and I was able to overcome and make my work life much better. I know that they are available for me.  I meet with my therapist on-site when she’s available and when something is triggered.  The mediation hotline is a blessing and the serenity rooms – which provide a place to rest, recoup or meditate in quiet — are wonderful.  Since April 2017, I have found a holistic, prescription free approach to manage my condition and I feel 100% supported by Prudential. I know firsthand that the right type and level of support, gives employees like me what we need to be more engaged and productive – both in and outside of the office.

Around the time I sought help from Health and Wellness, I began volunteering with the Women Veteran Subcommittee of the New Jersey SOSVETS Stakeholder Group. Over last 18 months, we’ve worked to create a day of recognition for Women Veterans in New Jersey.  On June 12, 2019, New Jersey state officials, military service members, veterans, Prudential employees and the press gathered at our Prudential office to watch Acting Governor Sheila Oliver sign New Jersey Joint Resolution No. 114 into law, establishing the day as Women Veterans Appreciation Day. Just one week later, a bipartisan resolution was passed in Washington, DC designating the date as a National Day of Recognition.

Since changing roles, my coworkers have fostered a truly wonderful work environment that is kind and compassionate. Coming out of my last experience, I have been very open with the Prudential Pathways team about my disability. I feel welcomed and empowered.  I am able come to work at Prudential as my full, authentic self, which is so important for me. It’s difficult to hide your feelings at times but knowing that I’m entering a positive work environment is a breath of fresh air.

Amy Warner

My disability was my secret for over 25 years as I climbed the corporate tech ladder. Looking back, it is something I wish I had not hidden for so long!

Amy Warner
Amy Warner

I was 19 when I started losing my hearing. I was studying to become an aerospace engineer with dreams of becoming an astronaut. Like many people with hearing loss, I was in denial. My roommates told me the TV was too loud, to turn down my music, and get my hearing checked. Instead, I isolated myself, spending time in my room with the door locked so no one would bother me.

I realized the severity of my deafness when I awoke suddenly to a fireman shaking me in the middle of the night. I had already lost hearing in one ear and hadn’t heard the alarms blaring throughout the building. This was a rude awakening – I had a hereditary disorder causing progressive deafness. Not only was I deaf in one ear, I would gradually lose hearing in my other ear.

This news was devastating. I worried if I would be able to graduate, lead a normal life, or even get a job. I was determined to persevere. I hid my hearing aids. I became so proficient at reading lips I was voted “best eye contact” in my engineering graduating class. To this day, my focused engagement and “eye contact” have become a major asset, helping me to build relationships.

Letting my team know about my disability – and the ways they have supported me – has been life changing Amy Warner VP and GM, IT Digital Business Solutions & Corp Dir. of Accessibility, Intel

Overcoming challenges in the workplace

Over 70% of disabilities are invisible. I was no exception. As the days and years progressed my hearing became worse. However, the extent of my hearing loss was hidden and often very confusing for people. Sometimes my lack of response could be interpreted as rude, or not engaged, or – one of my biggest fears – not capable.

Cube life was becoming increasingly difficult. For days with multiple calls, I would sit alone in a closed phone booth, exhausted from straining to hear conversations. I struggled in large open forums and town halls. I started to believe I may need to leave the workforce. I wasn’t sure I could continue to be successful as a leader at Intel.

Sharing my story

Throughout my career, I was determined to not let my disability define me, but it was always something I felt I had to hide. I worried people would think I am less capable Or it would limit my career advancement.

In 2018, I was asked to publicly share my story. I hesitated. Why would I want to tell more than 100,000 Intel employees (and then, the world) about my hearing loss? Then everyone would know my secret – I have a disability.

I finally decided to share, hoping it could impact others. What surprised me, was the overwhelming inspiration and empowerment I received in return. Once the news hit, my company, managers, and colleagues rallied behind me. They allowed me to work where and how I work best. Co-workers started reaching out to me for advice, some who struggled with hidden disabilities. Letting my team know about my disability – and the ways they have supported me – has been life changing, enabling me to more empowered, transparent, authentic, and fearless to be my best self.

Leading out loud with my disability

I am early in my journey of living and leading out loud with my disability. It took me a long time to figure out that my disability is a strength. Each day I became more innovative, more resilient, and more fearless, adapting daily to my environment.

I believe it is important to recognize the power and influence we as leaders can have, at work, in life and in the industry. I went from being hesitant to ask for accommodations to leading the way in driving accessibility pilots for new technologies and solutions to help shape a modern workplace where everyone can be productive and contribute.

As a leader, if I am hesitant to share my disability, what are others in the organization feeling? By sharing our stories, being fearless and being vulnerable, we can help lead the way in creating a psychologically safe culture where others are allowed to be their authentic selves. Ultimately, we can help change the conversation and break down social stigmas in our workplaces and in society.

I am proud to work for a company that encourages every Intel employee to be bold and fearlessly focused on going beyond what they thought possible. Intel believes in order to shape the future of technology, we must be representative of that future. As the new corporate director of accessibility, I am excited to lead our initiative to drive a sustained culture of accessibility, embracing technology to eliminate barriers, foster innovation and empower all people to reach their full potential.

Steven Fontaine

As an individual who identifies as blind I use a screen reader, which is software that interprets digital content on all my electronic devices. This software empowers me to successfully do the work that I do and with which I am so passionate. It has taken me some time to find the best fit for my skill set in a professional setting. While I am extremely tenacious when it comes to finding ways around digital barriers, I feel that no one should have to struggle when trying to access websites, mobile apps or everyday electronics that our society has come to rely on. This is where my passion for digital accessibility began.

Recognizing how much I could contribute in helping ensure technology is built to accommodate end-user needs across the spectrum of disabilities, the challenge became finding the organization that would embrace and recognize the value of my skill set. Hilton presented itself at just the right time.

I am thrilled to be working with this leading hospitality company that is committed not only to making their public-facing digital experiences accessible but is also dedicated to ensuring internal technology platforms are accessible to their workforce. Hence, my niche…I am a Senior Accessibility Analyst on Hilton’s Digital Accessibility team. I am assigned to the delivery team, which is building our new, custom call center application. I am a fully integrated and participating member in all agile ceremonies and work directly with all cross-functional roles on this team. My work on this team is critical, as Hilton employs call center agents who are blind and visually impaired. Making this custom Call Center application accessible will allow for career advancement of our agents who are blind and visually impaired, as well as enable Hilton to expand its hiring of people of all abilities, with minimal external accommodations necessary.

My lack of vision does not keep me from living as full and rich of a life as everyone else who I encounter daily. I may just approach things from a different angle. Steven Fontaine Senior Digital Accessiblity Analyst, Hilton

I enjoy working with a dynamic software development team daily to help them understand digital accessibility considerations on all levels of the development lifecycle. I bring a firsthand account to why inclusive design is important so that people of all abilities will be able to not only work but thrive here at Hilton. Although I am only impacted by lack of vision, when it comes to digital content, I think about all aspects of making content accessible for all. I don’t want anyone to be left out.

I have the good fortune to travel across the country to our different Hilton offices for meetings and enjoy spreading the word about what I do at Hilton. People who I encounter express how impressed they are with the direction that the company is going. I also love traveling during my personal time, and my incredibly goofy, smart, and all-around loveable guide dog Robert makes sure I arrive safely wherever I am going whether for business or pleasure.

My lack of vision does not keep me from living as full and rich of a life as everyone else who I encounter daily. I may just approach things from a different angle. I think of that as a major asset when it comes to voicing a different perspective and I hope this will continue to increase the diversity of hiring on a corporate level. I do not feel that I am treated any differently than anyone else on my team, but I do think that it takes everyone who I encounter some time to find the best way for us to work together, and I try to allow everyone to come to that realization in their own time. I have found that sometimes people in larger organizations may not have had the opportunity to engage with someone of my abilities and I always try to educate as gently as possible. It is extremely rewarding to be part of this organization that is helping change the landscape of disability employment.