Finding the Silver Lining: A LINK20 Perspective for COVID-19

Finding the Silver Lining: A LINK20 Perspective for COVID-19

Introduction

This e-book features 17 personal perspectives from LINK20 members about dealing with the new reality caused by COVID-19 -- a reality that has brought many questions, challenges, and uncertainty to our everyday lives.

As a response to this pandemic, LINK20 members have created a blog compiled of articles ranging from describing challenges, highlighting successes, or simply sharing tips on how to find the silver lining. The topics they cover are very diverse and include employment, education, mental health, social media, and traveling during the pandemic era.

LINK20 members are always looking for ways to voice the obstacles they face and solutions they find, with the hope that they will be able to change the lives of people with disabilities and bring about their full inclusion in society. It is exciting to see LINK20’s leaders voicing the disability perspective in order to help our society become more inclusive during these turbulent times.

Jay Ruderman President Ruderman Family Foundation

Our writers represent the diversity of LINK20 – they live and work in different states across the county (NY, NJ, FL, CA, MA, NV, SD, DC, MD, UT). They also identify as having a wide range of disabilities, including blindness, autism, cerebral palsy, mental health challenges, and other cognitive, intellectual, and physical disabilities.

We are proud of our members for taking this initiative and sharing their messages. We hope you enjoy reading these articles as much as our members enjoyed writing them.

Lead on!

LINK20 Staff

Table of Contents

Employment

1

Larissa Martin

3

James Rath

5

Lucy Meyer

6

Aaron Kaufman

7

Jonathan Bertrand

9

Katherine Magnoli

What is a Luxury to Society During this Pandemic? From a Person with a Disability’s Perspective

Traveling as a Blind Person Will Look Different After This Pandemic

Students with Disabilities During Coronavirus

The Importance of Gratitude in Challenging Times

Living in a Social Media Persona Dominated World

Somewhere Over the Rainbow

11

Amani Carson

13

Lizzie Gray

14

Jenny Sichel

The Benefits of Working from Home

Staying Positive During COVID-19

The Birds Still Sing

Digital Media

Travel

Mental Health

Education

Employment

15

Sarah Kim

17

Russell Lehmann

19

Marisa Parker

20

Kendra Muller Taylor

21

Sarah Horowitz

25

Rania Abi Rafeh

27

Selma Sulejman

29

Kendra Gottsleben

Zoom-ing with a Speech Impairment

Making Online Meetings More Accessible

How to Find the Silver Lining During the Coronavirus Pandemic

Uncertainty in the Age of COVID-19: On Education and Disability

This Is New

Leveling the Playing Field

‘Our New Normal’

Navigating the COVID-19 Pandemic with a Disability

Digital Media

Travel

Mental Health

Education

What is a Luxury to Society During this Pandemic? From a Person with a Disability’s Perspective

By Larissa Martin

By definition, luxury is a state of great comfort and extravagant living.

During this pandemic, I have noticed a lot of people complaining on social media about not being able to go anywhere or do anything — how they cannot get their hair cut or see family and friends, etc.

I get that they are frustrated.

I really do. Though for me, a person with a disability, who has cerebral palsy, is an amputee and is a wheelchair user, it is not all that different from every day.

I already consider these basic things as luxuries to begin with; all the activities that everyone has been craving and wanting to go back to so badly. Someone like me can’t have those things and I’m okay with that, but how and why? Why am I okay with not having these things everyone else is privileged to have? The simple explanation is, I rarely get to have them, if ever on a normal day. So, I’m not as upset as a lot of people are. You could say, it’s normal for me and many others with disabilities.

Don’t get me wrong, I miss the luxuries I did have. But it’s not the luxuries everyone thinks. Not vacations, not driving, because I can’t drive. I miss seeing my chosen family as I call them, my best friends. I miss them like crazy. I normally see them once a month or sometimes, due to life being crazy, I go months and months without seeing one of them. That’s just life and what happens. I’m so grateful and thankful for Zoom and other apps which help me stay connected to all of them during this time.

As a society, we need to understand and grasp the concept that luxuries are things we think we need, or we feel that we’re entitled to certain luxuries just like celebrities do because they’re famous and think, “We have them at our disposal so why not take them for granted? What if people didn’t have them?"

For me and other people in the disability community, we don’t have a lot of luxuries the rest of society does. We’re

excluded from having these things not by choice rather by our circumstances of whatever disability that person may have.

I think if you asked people with disabilities what luxury looks like for them, you’d get different answers because every person is different — maybe that could be a little bit of privacy without aid or a family member for a bit.

Whatever it looks like for you, no matter what your disability looks like, visible or invisible, there are different luxuries for everyone.

For me personally, the big luxury I’m missing right now is my chosen family — they help me in so many ways. They help me experience things I don’t get to that a lot of people do.

I think when all this is done, society needs to consider what is a luxury and what isn’t and think about including people with disabilities in the conversation.

At the end of the day, we as a disability community understand and value luxuries and what they are to us more than most. They are just things and experiences that

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we can complain about not having right now. Luxuries are things we do not actually need. We should see luxuries as tiny things, like a conversation with someone, some self-care to better yourself, or just an appreciation of all the things and people in your life. All these tiny things are the luxuries we need to cherish and truly appreciate. They are the things that are more important luxuries and we can’t afford to lose them.

At the end of the day, that’s what matters — not the luxuries we can go out and get or experience. I do and will continue to cherish these small luxuries I have and maybe the rest of the world can do the same, not just for me but for the disability community as a whole.

I think the world would be in a better place once we realized this.

Larissa Martin is an inspirational non-fiction writer self-published author. Her goal writing is for people who read her work see things from a different perspective.

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Traveling as a Blind Person Will Look Different After This Pandemic

By James Rath I’ve been legally blind since birth. I’m a filmmaker and use my skills to share stories from within the disability community and bring awareness to accessibility. In the climate of social distancing, as a blind person, it’s been a bit of a culture shock.

As a blind person, much of my world is very physical and revolves around touch to identify the world around me. I think one of the hardest adjustments though will be how we receive guided assistance. Oftentimes, I have friends or even voluntary strangers sight-guide in public or private settings. On top of that, sometimes navigating independently in public results in an accidental bump into someone. On average, most people don’t mind the mistake whether from their kind nature, or they recognize my whitecane and excuse my visual impairment. As a result of the pandemic, our normal social mannerisms are changing and we’re becoming more cautious of our health and safety. In a sighted society, however, this may leave long lasting struggles

for how us blind people will navigate this new world.

As an employed blind person, my job has allowed me to continue working from home. But much like others within the entertainment industry, jobs have been postponed or dried up altogether. As of writing this, I was supposed to be on a film shoot in Canada, but instead, I’ve been doing my best to stay home for the last three months in Los Angeles, only going out for daily walks, trips to the local market, and post-office. This was quite an adjustment for someone who’s been traveling more frequently than ever these last couple of years. I had even been developing a project called BLIND ABROAD that centered around traveling with a disability, but as you can imagine that looks quite different now.

Right before airlines and governments put travel restrictions into place and recognized the issue that we’d be facing, I had taken a last-minute trip to Istanbul, Turkey with my filmmaking partner, Josh Forbes.

The initial reason for this trip

was to collaborate with a local tech company on a commercial campaign. This branded film involved me meeting a group of blind children who were experiencing accessible movies thanks to an app that enabled viewers to watch cinema with audio descriptions. I had known nothing about Turkey prior and took this as an opportunity to have Josh film every moment of the trip to capture what life is like in Istanbul for blind residents and travelers alike.

As the pandemic began to impact us all, I wanted to hear how some friends within the blind community had been adjusting.

On my YouTube channel, I had collaborated with numerous voices to vent about the struggles and barriers we were presented with but also used the platform

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to share accessible resources for entertainment, news updates, and connecting with students and others. With the extra free time, I had taken it upon myself to be more involved with and communicating more frequently with other blind creators, writers, and advocates.

I had been sitting on the footage from the Turkey trip for a couple of months and was assessing the global pandemic to see when it would be an appropriate time to talk about travel. Unfortunately, I still don’t think we’ve gotten to that point 100 percent. However, I decided to rethink the execution of BLIND ABROAD. Though content related to the virus is

valuable, I felt it was important to diversify content, as too much of one thing can be unhealthy to consume. In the process of adapting what would have been an ongoing documentary series, I decided to expand the medium into something more sustainable that made sense in the climate of social distancing. Along with releasing our mini-documentary, I decided to launch a remote podcast, and to blog related to amplifying the voices within the disability community where I could connect and learn from people around the world.

I’m optimistic that the world will open up to travel soon, and we’ll be able to follow up in person

with many of the guests I’m bringing onto the podcast to talk with remotely. But I don’t think travel will look the same way as it did when I traveled to Istanbul. Many airlines and governments will have new policies and precautions in place for the health and safety of the public. I can imagine many of these policies won’t consider the blind or disability community as a whole when implementing these measures. I’m afraid much progress we’ve made to travel independently with humanizing accommodations will take a step back for the foreseeable future.

James Rath is the co-creator of a travel documentary series, BLIND ABROAD, focused on showcasing the experiences of traveling with a visual impairment.

4

Students with Disabilities During Coronavirus

By Lucy Meyer

I have cerebral palsy and graduated from high school last year. While staying at home during the coronavirus pandemic has been challenging, I’ve been doing my best to stay busy and positive. I’ve kept on a regular schedule filled with practicing life skills, cooking, painting, exercising, swimming, and LOTS of Zoom and FaceTime calls to feel connected to my friends and family.

I’ve talked to some of my friends with disabilities who are still in school. They told me that they are having a really hard time being home from school because they miss their friends so much. This makes me very sad. Unfortunately, few of their fellow students call them so they feel so alone and isolated.

I know the schools are teaching online, but my friends said that for them, they only have online classes once a week, unlike their peers without disabilities who have school five days a week.

I believe this must change and

students with disabilities should also experience online school five days a week.

I know schools are trying really hard to keep students learning, but I don’t think enough is being done for students with disabilities.

Kids with disabilities are often already isolated and excluded, and this pandemic is making it worse.

Just because kids with disabilities need extra help doesn’t mean they should not continue to get the same opportunities to learn and interact with their friends just like students without disabilities. A few calls on FaceTime from other students and teachers would really help cheer up

any kid, but especially those with disabilities. You can do this too — give someone an unexpected call.

I bet it will brighten their day (and yours too)!

As a real Zoomer now, I’ve started giving speeches and answering questions for schools over the internet. The focus of my talks is the importance of accepting and including all young people, especially if they have a disability.

I love doing this! I think it gives the students (and their teachers) a change of pace from their regular classes — kind of taking lemons and making lemonade.

Lucy Meyer is 21 years old and has cerebral palsy. She is the official National Spokesperson of the Special Olympics – UNICEF USA Partnership since 2015.

5

The Importance of Gratitude in Challenging Times

By Aaron Kaufman

The news is extremely depressing these days. More than 130,000 Americans have died as a result of COVID-19, millions of people have lost their jobs and there have been several troubling shootings of late.

Many people with disabilities, including me, at times experience social isolation and for many, especially my friends who live alone, the pandemic has compounded that isolation.

Additionally, people with disabilities are more at risk of getting and dying from the coronavirus. According to an April 8, 2020, article in The New York Times, a large consortium of private service providers found that residents of group homes and similar facilities in New York City and surrounding areas were 5.34 times more likely than the general population to develop COVID-19 and nearly 5 times more likely to die from it. This is a time where it is easy to become extra anxious or depressed, no one can be blamed for feeling that way.

However, this is also a time when it is essential to focus on gratitude. It’s not always easy, but I have tried to focus on all the blessings that life has afforded me. At a time when many people are out of work, I have a job as a disability lobbyist for The Jewish Federations of North America which I love because I myself have cerebral palsy. My job enables me to fight for “my people” every day. I am proud of the work that my colleagues and I are doing to ensure that Congress understands the needs of people with disabilities and those that support them.

Further, my Judaism is very important to me. I am a member of the Union for Reform Judaism North American Board, so I appreciate that my synagogue — Temple Micah in Washington, D.C. — has had a wide variety of services on Zoom. During this uncertain time my faith has given me great comfort. So, if you are struggling, I hope you find something that comforts you and I urge you to focus every day on gratitude. I know this is easier said than done. If you are struggling know you are not alone, and I leave you with my favorite Irish proverb:

My brother, who also has cerebral palsy, was among those who became infected with the virus.

However, I am profoundly grateful that he remained asymptomatic throughout the whole time and that the danger has passed. I am so thankful for the broad support network I have who support me when I am feeling low; they raise my spirits.

May the road rise up to meet you.

May the wind be always at your back.

May the sun shine warm upon your face; the rains fall soft upon your fields and until we meet again, may God hold you in the palm of His hand.

Aaron Kaufman is a Senior Legislative Associate at the Jewish Federations of North America. He focuses on disability and poverty issues.

6

Living in a Social Media Persona Dominated World

By Jonathan Bertrand

In the wake of COVID-19, we’ve come to realize that a new day is upon us. As an African American male dealing with the pandemic as well as social injustice, it has been a stressful time. Having dealt with a near two-month lock down plus racial tensions, I’ve come to realize that the best thing to do is to either support the cause fear-free and in relation to COVID-19, try our best not to live in fear. COVID-19 has opened my eyes to the reality that the term “friend” is used loosely. The stoppage of proper communication actually led to people temporarily filling in a void they never previously addressed.

Having dealt with anxiety in my early years, a sense of loneliness struck me during this pandemic, which triggered a lot of emotions that were either hidden orsoon surfaced. After two months of lockdown I was at my wit’s end and had to take a threeday hiatus to another city two hours away, because my subconscious couldn’t take being inside the house 24 hours a day and not being able to see people

or communicate with people.

Now, this is just the beginning of a transition that will soon become normal life. Yes, we can’t stop a pandemic from happening, but fear and misinformation were all too prominent. Not having clear leadership on a national and international level made things a lot more difficult not just mentally and physically, but also financially.

For the last five years I’ve had an opportunity to run a foundation, www.SocialMediaAwareness.org, which explores how social media affects your mental and behavioral health and sadly, how it has impacted our lives as users.

To see how social media is being used to target protesters and those who support them in solidarity was very disheartening. To know that social media is being used to take away free speech as well as target individuals who are frustrated and just want to express themselves opened up a new belief for me that our position in the world as American citizens has changed, and this shift is highlighted by how we handle pandemics. Police brutality and

politics damage the very citizens who need the most help.

Having dealt with learning disabilities since a young age, I understand that the current situation shows that marginalized people can get caught into a new ideology or belief based on emotions, influences, and traumapast and current. Whether it’s a post online or place of origin or religious belief attacking someone verbally or physically, this isn’t the way to live and it isn’t the way to conduct ourselves as human beings.

So, for those who seek guidance on how to handle the current moment with the utmost urgency, I leave you with this: When you see something, say something, but also know your voice is powerful.

You can make a difference for people with disabilities and create change. There is power in numbers. Don’t lose faith. There’s hope.

“One post can change the mind; one can change a generation.”

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Jonathan Bertrand advocates for and discusses social media awareness in mental and behavioral health. He is a native of Orlando, Florida and enjoys traveling and learning about new cultures.

8

Somewhere Over the Rainbow

By Katherine Magnoli

For as long as I can remember, I have identified with the movie “The Wizard of Oz.” I felt as if I were Dorothy, always dreaming of a new and different world from the one I was born into. I would make plans to travel and see new things. I would show very little appreciation at times for the little things in life. That is until I got sick with kidney failure and developed many other conditions throughout my 20s and 30s. All of which were taken care of by doctors.

My countless hospitalizations made me value how precious life is and I no longer really longed for another one. However, in the past two months, my past prayers have been answered, like Dorothy, in a very backward and disturbing way. Living in a world with COVID-19 has made life very different for all of us but especially those with medical conditions. I know for me, since the beginning of the pandemic, I have had to stop certain treatments that are essential to my overall physical wellbeing.

Instead, I have adjusted to home

care with the help of my mother.

One example of this is my development over the years of a condition called lymphedema.

This is a condition that creates swelling in my right leg; caused by the lymphatic system no longer working properly. The remedy is a specific form of massage therapy and a gentle wrapping. Over the years, I have gone through this procedure many times. However, I have stopped going because the only clinic I am aware of is in the hospital. Thus, out of precaution, I have decided to have my mom carry these duties out for me and sometimes I even do it to myself.

I choose to live this way because I am at a much higher risk of catching this virus in that type of environment.

Another example of how COVID-19 has negatively affected my everyday health care is, about two weeks ago I developed symptoms of a urinary tract infection. This was something I was eager to take care of and immediately called my doctor’s office. To my dismay, instead of the doctor simply

coming to the phone, to prescribe me an antibiotic that always does the trick, he insisted we speak on Skype so he could see me. Now, though I am a writer, I am not very technologically savvy. Therefore, this was quite a struggle. After a full 24 hours of trying to add this app to my phone, I finally was able to speak to my doctor face to face and get the prescription I needed.

My third and final example of how COVID-19 has affected my medical care relates to my dialysis center. The procedure is still the same except the atmosphere is far from anything I have known since I started. My kidneys failed almost 13 years ago, and though it took a while to adjust to my new normal of changing my diet and so forth, I then used my strength to not only accept my situation but help other patients do the same.

I would spend four hours three times a week talking to as many patients as I could, giving them renal diet tips, and methods on how to pass the time while on the machine. Since the pandemic, I still do my best to inspire other

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patients regardless of social distancing. Unfortunately, due to the wearing of masks and the rule of staying six feet apart, it is a little more difficult to connect with the other patients. This has been quite an adjustment because for years I have motivated myself to not only accept my situation but help others. Now, no matter

how I try, the feeling of loneliness has crept back in. A feeling I hope disappears soon along with this “new normal.”

These are just three examples of everyday struggles that people with disabilities, like me, have faced during this change. In the end, I wish life was in “The

Wizard of Oz;” so I could click my heels three times and life would be back the way that it was. Until then, I will continue to do my best to appreciate every moment and inspire others to do the same even though our lives are different for the foreseeable future.

Katherine Magnoli is a published children's book author and public speaker. Katherine was also crowned Ms. Wheelchair Florida 2017 where she advocated for inclusion in schools and beach settings.

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The Benefits of Working from Home

By Amani Carson

Recently, LinkedIn’s Workforce Confidence Index found that over half the population would like to maintain the option to work from home (WFH), if at all possible.

I, personally, am inclined to agree. In addition to reducing our carbon footprint, and saving both employers and employees money, I believe giving people the opportunity to WFH also offers the following benefits: 1. Intentional Work: Gone are the days when your coworker or, god forbid, your boss could just swing by your workstation to ask a “quick question,” which somehow becomes an hourlong impromptu meeting that disrupts your (slightly ambitious, but appropriately challenging) plan for the day and maybe upending your schedule for the week. Setting up a Zoom meeting or even a phone call requires scheduling and intention.

Collaboration does not need to mean chaos; brainstorming sessions can remain organic, but now they can also be organized.

2. Community Engagement: “Work from home” does not

mean “stay at home.” Once we begin moving around again, WFH means you can become a regular at your neighborhood coffee shop or bookstore. WFH means you and your neighbor can walk down the street to your community library, instead simply waving in passing as you commute to your separate jobs. WFH doesn’t mean seclusion or the loss of human touch, rather it means we can be active in our own communities and cultivate connections outside of the office.

3. Inclusive Work: No office space, no matter how modern or flexible, will suit every worker. The harsh reality is that the office isn’t for everyone, and many smaller businesses or nonprofits do not have the financial means to immediately create fully inclusive environments. While the company might be compliant with the Americans with Disabilities Act (ADA), just because the building is accessible doesn’t mean the environment is optimal. The right workers are not necessarily those who live in commuting distance to the company or have the expendable income or personal

flexibility to relocate. The option to work remotely or to flex work (working remotely and in the office) gives everyone the chance to work with the organizations they fit best in the spaces where they function best.

4. Time: Even if you finish early and clock out on time, work always extends beyond the workday. Think about the time you spend getting

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dressed, taming your unruly hair, packing a lunch, and commuting to and from work. Although you might not be on the job, these are hours you don’t spend with your loved ones, pursuing your hobbies, catching your ZZZs, living your life because of the job.

Reducing these uncompensated work hours gives more workers

the chance to have a life outside of their jobs and attain a true work-life balance. Imagine replacing your morning mad dash with a stretch and a few minutes of meditation; grabbing a quick bite with a friend or walking the dog during your lunch break; or helping your child with homework at 5 p.m. instead of

missing dinner while sitting in traffic. A work-life balance isn’t having a life at work. Rather, it’s having a life outside of work.

To read more about the Workforce Confidence Index, please click here.

Amani Carson holds a degree in psychology from Duke University. She has worked on advancing health literacy at Harvard Medical School and Boston Medical Center.

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Staying Positive During COVID-19

By Lizzie Gray

The years 2019 and 2020 were shaping up to be wonderful. I got my associate’s degree in human services from Massasoit Community College in May 2019.

In the fall, the Ruderman Family Foundation chose me to be an intern at the Massachusetts State House through a new internship program. I was paired with State Representative Josh Cutler, who is the co-chair of the Joint Committee for Children, Persons and Families with Special Needs.

It was a perfect pairing because my long-term goal is to be an advocate in the disability community. When I wasn’t at the State House, I had a parttime job in the main office of my synagogue performing different administrative duties as needed.

Life was good and I was hoping to get a job, move into my own apartment, and begin to be more independent.

Yet in March 2020, along came the invisible devil — COVID-19.

The State House closed, the synagogue closed; I could not go to the city by train, I have no idea when or if I will be allowed back to either opportunity. What’s next and how did I cope?

As my anxiety began to turn ugly, I decided to try and find a silver lining. The following three things have really helped me get through this difficult time: • Zoom has been my best friend. I am doing lots of online meetings via Zoom and other video platforms with friends and different organizations. This has helped me to feel connected to others and see that I am not alone on this journey.

• I organized a food drive in my neighborhood and collected about 20 bags of food to donate to the Easton Food Pantry. Helping others in need is very important to me and this helped me think outside of my own situation.

• I decided to use my time taking an online class to pursue my

bachelor’s degree and I am happy to say that I got accepted to Bridgewater State University.

I am looking forward to seeing what the next chapter holds for me in this unprecedented time.

After all, we are in this together.

Lizzie Gray is a proud disability advocate who hopes to impact change through policy. She is currently an intern at the MA State House.

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The Birds Still Sing

By Jenny Sichel

Every night for the past two months, I have left my bedroom window open, because every morning the birds sing and remind me that there are still some things which have not changed.

Around me, everything seems to be shifting and mutating.

Sometimes it is challenging to grasp a piece of solid ground or a bit of legitimate information.

Usually, my ObsessiveCompulsive Disorder takes time to create a chaotic atmosphere of anxiety in my mind that fades into oblivion at my command.

However, with the added stresses that are circulating continuously in the world right now, these depressive thoughts, have become more frequent and faster forming. Constantly escalating my anxiety levels are questions like, “Will I ever get to row again with my friends?” or, “Will my parents stay healthy during this outbreak?” The unknowns have manifested themselves in my racing heart and sweaty palms.

With the murky fog of depression looming, I, like many of my peers, have had to figure out ways to adjust. For me this involves the realization that, although much of my life is unsettled, many parts of my world are still living and thriving. Spring is here, right on time as per usual. And like clockwork, the birds chirp every morning outside of my window.

The rain still feels cold when I go for my walks and my bed still feels cozy and warm every night.

Eventually, society will be back to some resemblance of normal and I yearn for that day. But until then, my mind takes solace in the fact that despite so many unknowns and so much change, some of life is still predictable.

As a part of the LINK20 movement, I have seen how sharing one person’s experiences can change another person’s life.

This is especially true when it comes to mental health because of the major stigma surrounding it that prevents people from speaking out or seeking help.

When I first started talking about my OCD, I was afraid of judgment and worried of rejection, but I ended up receiving support and love. This helped propel me to seek treatment. I am now confident enough to share my experiences with friends, family, and my LINK20 community, with hopes that I can touch another person’s life.

During these challenging times, it is imperative to let each other know that we are not alone. Many people are having a difficult time coping and we need to make sure that we do not push away anyone because of their disability.

If you are worried to talk about your mental health challenges or something you are going through, just know that there are people out there who will 100 percent support you. Speak about it, write about it, draw, paint, express, do whatever you need to stay mentally healthy, but most of all just know that you are not alone.

Jenny Sichel is a 2016 USA Paralympic silver medalist in rowing. When she is not on the water, she works at the Ruderman Family Foundation as the LINK20 Coordinator.

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Zoom-ing with a Speech Impairment

By Sarah Kim

“It’d be easier to understand me if we do the interview over video chat due to my speech impairment.” I’ve written a couple of dozen iterations of that sentence in my emails over the past two years.

Ever since I graduated from Columbia University’s journalism school, I’ve been working as a freelance journalist. I’ve been fortunate that a handful of publications accepted my pitches and published my work, with some of them even bringing me on as a permalancer. I have mild cerebral palsy, which affects my speech and mobility. A significant part of a journalist’s job is to interview sources to quote in stories and to gather background information.

It is a tad bit ironic that, as a journalist, verbally communicating is considerably harder for me. I do my best to make the listener’s job as easy as possible. Almost 100 percent of the time, I inform the interviewee of my speech impediment, and that speaking via video chat, instead of over the phone is easier for me; then they can read my lips

as I speak. Another perk about videoconference platforms is that they often come with a chat box, so I type out my words in times of severe misunderstanding.

In the days and weeks after most of the U.S. shut down to slow the spread of COVID-19, everything — from school to work to socializing, and even to weddings — has moved online, most notably onto Zoom. People have been on Zoom calls so much that “zoom” has become a regular verb, just like “google.” (Side note: what happened to Skype?)

At first, I let out a sigh of relief.

I liked the idea of talking over video chat as the new “norm.” In pre-pandemic times, video calling wasn’t something most people regularly did, so when I’d bring it up as a suggestion, it would feel somewhat awkward. But now that it’s becoming such a common thing, I thought it would become one less hurdle. I wouldn’t need to necessarily “request” a meeting or interview to be over Zoom or Google Hangouts since “meeting” over video chat has become the new default.

However, instead of this new reality moving my life forward, it has, in some ways, moved it backward. Throughout high school and college, participating in a class discussion had been challenging, especially in a large class setting. When professors or classmates didn’t understand me, I would type out my comment or question in a text-to-speech app. This would often create an awkward lag in the natural flow of the overall discussion.

The class would have to either wait for me to type my words or continue and come back to me once I had finished typing. When the latter occurred, sometimes the class would’ve proceeded way

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ahead with the conversation that my remark would be too late or irrelevant.

finding myself staying quiet and not actively participating in the calls.

Interestingly enough, I’ve seen the same issue occurring on multi-people Zoom calls.

Video chat presents its own unique challenges. Coupled with technical issues, such as weak internet connection or microphone feedback, a speech impediment can cause further muffling on the receiving end. As a result, I’m

Even with such advances in technology, I — along with other people with disabilities — am experiencing the same issues as I had over a decade ago. The issue of people and technology not understanding my speech patterns goes beyond the confines of video calls. For example, voice assistance devices, such as Siri,

Echo, and Google Home, can significantly improve the lives of people with mobility or dexterity difficulties, but not if they also have a speech impairment. As a society, we’ve become gradually more accepting of people with various disabilities. But when it comes to people who speak differently than what’s considered the norm, progress is slow to come.

Sarah Kim is a freelance journalist with cerebral palsy based in Brooklyn, NY. She has written for Forbes, Teen Vogue, Glamour, The Mighty, Columbia Journalism Review, Greatist, and many more.

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Making Online Meetings More Accessible

By Russell Lehmann

Due to COVID-19, our world has been turned upside down.

Restaurants once full of lively conversation now sit empty and desolate. Schools are vacant, with our educational centers now in the hands of parents and the students themselves. Sporting arenas are dark and silent, a surreal scene for many as sports has historically been our main outlet as a society during times of uncertainty.

Social distancing has become the new normal, and while it is vital that we isolate ourselves physically, it is imperative that we do not do the same emotionally, for the cornerstone of any healthy society is human connection, a need intrinsic to each and every one of us.

While we have all been hit hard during these times, the disability community has been especially affected. The largest minority group in the world once looked to socializing with their peers as a refuge from their daily struggles, and with this less and less possible these days, are now seeing their mental health and wellbeing deteriorate.

Much of our emotional needs, as well as our professional obligations, are attempting to be met through online activities such as zoom and webinars. During these strange times, it is now more important than ever to raise awareness about the accessibility of these meetings for individuals with disabilities in order to ensure that no one is left behind as we all attempt to navigate uncharted territory.

As a motivational speaker with a platform of autism and mental health, many of my meetings as of late have been conducted on platforms such as Zoom. From my experiences, I have determined the following ways to promote inclusion and accessibility for those with autism and mental health struggles.

Having autism, I very much appreciate it when agendas and materials are sent out ahead of time, so that I know what to expect during the meeting.

Having all informational resources that are dispersed be universally accessible is a must, especially for those with

dual diagnoses and multiple disabilities. It is also helpful for all participants that any materials are written succinctly without needless words and/or jargon.

Some individuals on the spectrum also benefit from practicing the meeting ahead of time with the host to make sure no question or concern regarding the technicalities of the meeting go unaddressed. During the meetings, it is crucial that each participant limit any background noise to not cause any sensory overload. It is also important to only have one person speak at a time while all others who are listening have their microphones on mute. Features such as “raise hand� or a chat box will help the discussion run smoothly without participants talking over one another.

The host or moderator should introduce all participants before the meeting starts and remind them to state their name before speaking. Running the meeting according to the agenda and in an efficient manner lessens the chance of an individual on the spectrum becoming overwhelmed when things do not go according to plan.

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For webinars, avoid excess pictures and visual content that distract from the main point of the topic while also using plain language for those with intellectual and/or developmental disabilities. Captioning should be available on all video meetings and webinars in case a participant needs to mute all audio if it becomes too stimulating.

Recording presentations and meetings is also imperative for

those who need to access the content again in order to process all the information.

As individuals with autism are at a much higher rate of having mental health diagnoses, it is necessary for the host and all participants to be mindful of invisible disabilities. Along with autism I also have diagnoses of bipolar, panic disorder and OCD, to name a few, and these struggles

sometimes lead me to having to cancel my participation of a meeting at the last minute. This is another reason why recording all online gatherings for later viewing is vital. I can tell you, from personal experience, that there is no greater antidote to the guilt I feel when my struggles force me to cancel a meeting than the understanding, support and well wishes I receive from my fellow participants.

As we all continue to find our footing during this time of collective struggle, it is incumbent upon us to remember to continue to look out for one another after COVID passes. If it is two things this world lacks, it is compassion and understanding. Let’s make sure these times serve as a lasting reminder that we are all in this together, and that the key to a more fruitful and fulfilling future for us all comes down to one word: accommodation.

Russell Lehmann is an award-winning and internationally recognized motivational speaker, poet, author, and advocate for autism and mental health.

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How to Find the Silver Lining During the Coronavirus Pandemic

By Marisa Parker

Finding the silver lining in the coronavirus pandemic can be difficult. The constant flow of coronavirus news on social media platforms is the primary reason why discovering the silver lining in the crisis is difficult for me.

Posting to social media platforms and monitoring social media sites on a regular basis is a necessary part of my job. I find myself constantly checking social media sources for updates on the pandemic. Sometimes I feel that I am unable to find the silver lining in the pandemic due to the frequency of social media

posts surrounding COVID-19 that are posted online and the fact the pandemic will not be ending anytime soon. In order to decrease the amount of time I spend on social media, I have set limits for myself on checking social media sources after work hours.

How can someone go about finding the silver lining in the pandemic? There are multiple ways in which people can decrease their time spent using screens and social media platforms while remaining positive. Chatting with friends on Zoom or FaceTime can be a

positive tool to remain connected with the outside world while engaging in the practice of social distancing .

I also find that staying off of social media platforms after work hours reduces anxiety. Engaging in meaningful and fulfilling activities outside of work, such as going for walks outside, reading books, and listening to podcasts that you enjoy helps to reduce stress and anxiety. These activities can improve a person’s outlook on life and the current global situation we find ourselves in at the moment.

Marisa Parker is a Digital Coordinator at the Ruderman Family Foundation. In her role, she oversees social media content.

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Uncertainty in the Age of COVID-19: On Education and Disability

By Kendra Muller Taylor

There has been much talk in higher education about the “unprecedented” and “uncertain” nature of our times. I am thrilled to see the compassionate measures put in place to combat the uncertainty of COVID-19, and the pandemic’s disproportionate effect on underrepresented students. There has been increased talk regarding accommodations, alternative grading measures, online resources, and other mitigation techniques to improve equity for students. I have also seen the extraordinary power of fellow students collaborating with decision-makers to advocate for new ways of improving educational equity.

This discussion of equity in education has been one of both fascination and frustration for the disability community. Some students who normally had to fight for accommodations have seen increased empathy. In other cases, however, normal procedure has been flipped on its head as schools struggle to find

alternative means of providing accommodations in the pandemic.

But students with disabilities have always been experts at meandering through “uncertain times” due to their resilience in handling non-compliant Americans with Disabilities Act (ADA) standards, accommodation denials, and health emergencies.

The lives of students with disabilities are uncertain. From the quickly changing health symptoms to societal biases encountered, these students are constantly adapting to uncertainty in the way they will be treated by schools, uncertainty about their health, and uncertainty in their future career prospects once out of school. I vividly remember when I received an emergency surgery in the middle of the semester. That time was “uncertain” and “unprecedented” as I did not know this surgery would be needed. I was stuck in my own personal quarantine inside a hospital room. I missed vital education for much of the rest of the semester. Now, I see

that a video of class would have been an easy solution to what seemed an unavoidable obstacle, as many schools have now implemented.

In this period of international uncertainty, schools may be forced to reckon with their insularity of students’ current conditions. But when the pandemic crisis is over, students will continue to have personal crises — “one-person pandemics” that will turn their world upside down. I hope for a world where different methods of learning can be feasible for students in various situations. This time of tragedy has proved the ability of educators to achieve new heights of dignity and creativity in providing access to knowledge. It has also proven student resilience and ability to adapt. Access to education should be possible, and the pandemic has proven that efforts can be made to provide an education to all who desire it. This will be attainable as administrators take seriously the uncertainty of each student’s life.

Kendra Muller Taylor is a University of San Diego Law School student who is dedicated to presenting transparent research regarding unequal access in higher education for people with disabilities.

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This Is New

By Sarah Horowitz

As a stereotypical overfunctioner, I react to stress as a bulldozer reacts to a pile of rubble — with a powerful push and an over-controlling temper.

During a stressful crisis, my mind buzzes with steps that must be taken, checklists that have to be completed, phone calls that need to be made, and arrangements that must be finalized. I take full responsibility and shoulder every burden, all while running faster than my own problems can catch me. Mid-crisis, I am in control, hyper-focused, and piloted by that part of my brain that doesn’t have to feel, but just has to do.

This pattern of over-functioning feels adaptive, even motivating, during peak crisis when everything threatens to collapse.

But, as the crisis passes its crescendo and the adrenalin rush subsides, there is a jarring switch that occurs as a new normal takes residence. The dizzying pace I was functioning at suddenly slows to a dull ache. The buzzing in my brain ceases its violent hum, leaving me with a lonely, cerebral echo. My adrenalin-soaked body, once functioning at peak performance, rapidly exhausts and

slumps to the floor. I remember experiencing this switch after my grandmother died. From the 911 call to midway through the funeral, I over-functioned my way through the entire experience, taking on too much responsibility and too little self-care. But, as the funeral ended and everyone left in a trail of black, the adrenalin evaporated from my body and the air around me changed. The crisis was still there, but it had morphed into something heavier, thicker, and harder to shake. It was becoming a new normal, setting in roots and forcing my family to adapt to a future we were never ready for.

In literature, this emotional switch occurs when a community transitions from the “heroic” phase of crisis to the “disillusionment” phase of recovery. Directly after a crisis, adrenalin pumps in overdrive as the community bands together in a heroic effort to repair the damage. Once the “heroic” phase reaches its peak, the “honeymoon” phase begins and the community bonds over a shared catastrophic experience, resulting in reduced rates of

mental health. But, once this period of optimism is over, the disillusionment phase ensues.

[1] This phase is characterized by disappointment as our goals, needs, and expectations aren’t met, and we have to accept this emotional low as the current new normal. It is in this phase of crisis that rates of mental health conditions skyrocket.[2] Accepting a new normal is one of the hardest things to do, and COVID-19 is a new normal that has shaken our entire globe to the core. In a mad dash to slow the spread and flatten the curve, a new normal was set in motion on a global scale that changed the very foundation in which we operate. Initiatives were formed and executed, laws were written and decreed, and the world watched as the adrenalin-fueled peak of COVID-19 settled into the deep valley of normalcy. And as we sink into the disillusionment phase, we all realize – this virus is not a quick fix, but rather a long haul, and with that comes the desperate attempt to adapt to a world that seemed to change overnight.

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And change is hard. Whichever way you look at it. We have all needed to change our daily lives in the mists of this virus, in small and big ways, and as humans we are resistant to change. Change is uncomfortable, scary, uncharted and unpredictable, and especially in an unprecedented crisis like COVID-19, many of us are left floundering. We find ourselves obsessing over the health and safety of our bodies, taking measures to reduce contact and spread, but as we focus more on our physical health and that of others, we seem to put our mental health on the back burner.

It feels like the cruelest of ironies that the more thoughtful we are with our physical health during this time, the more thoughtless

we are with our mental health.

As we shelter in place to reduce contraction and spread, we disconnect ourselves from the healing benefits of nature and outdoor activity. As we decrease interaction with others and increase social isolation, we lose the healthful properties of social connection and physical touch.

This push-and-pull dynamic has changed the way we interact with others, as well as the way we interact with ourselves, in both good and bad ways. As a self-proclaimed introvert, I find myself uncovering healthy habits I had forgotten in the chaos of my pre-coronavirus life, but also falling into the lightly concealed trap of excess isolation. As an endorphin addict who copes with stress through exercise, I

find both joy in having time to be active but also guilt for being outside of my home. As a critical hyper-productive, working and studying from home has given me more time to learn, but also less structure to stay motivated.

The effect COVID-19 has had on mental health differs from person to person, but there are general trends that have been noted from previous crises that may provide us with some insight.

History has shown us what kind of impact global crises can have on our mental health. Increased rates of PTS, acute anxiety, and prolonged depression were noted in China following the SARS outbreak in 2003, and similar trends were seen in the aftermath of the West Africa Ebola

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epidemic, resulting in increased trauma-related disorders such as PTSD and anxiety-depression.

[3] And while the coronavirus is considered a biological disaster, studies have begun to equate its psychological effects to those resulting from natural disasters, such as tsunamis and hurricanes.

[4] We have seen increased alcoholism following the Japan triple disaster in 2011[5], heightened sleep disturbances after the Wenchuan earthquake in 2008,[6] higher incidence of PTSD and depression resulting from the September 11 attacks[7] — and this just scratches the surface. Other catastrophic events such as job loss, foreclosures, bereavement, and burnout also result in increased rates of depression and anxiety. On top of all this, I am left thinking about the increased rates of domestic

violence, the amplification of eating disorders, the resurfacing of OCD tendencies, and the relapse of substance abuse during this time. In many ways, coronavirus seemed to culminate into the perfect storm. The entire world was thrown into an unprecedented crisis and asked to adapt in a matter of weeks, without the usual social support or structured routine we were used to. It’s like flying without a net.

A couple of weeks ago, I found myself crying. In all honestly, it was a moment that caught me off guard. I was on a late-night walk in my neighborhood, mask on and earphones in, walking down familiar concrete and hoping not to run into anyone within a six-foot radius. And then, in one overwhelming wave of emotion,

I started crying. That was the moment I knew my adrenalin rush had finally been depleted.

As I let my brain accept the new normal around me, everything came flooding in at once — my anxiety about at-risk family, my frustration at under productivity, my shame centered around pervasive insufficiency, my depression stemming from lack of connection, and the collective grief we all feel for a past normal that will never return. Whether it is grief for the loss of a loved one or grief for the loss of a job, I believe we are all grieving the death of a past normal. And in that grief, I believe we can also find unity.

In a very literal sense, we are all experiencing this together.

Together, we blindly grapple through this new normal, hoping

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to find solid ground on an everchanging foundation, trying a bunch of things and having most of them not work. I’ve tried bread baking (so much harder than it should be), candle making (why do I think I’m a professional?), meditation (stop telling me to open a metaphorical door to my potential), and a slew of other hobbies that I hoped would give me purpose and structure. While most, if not all, of these attempts failed, I found other people who were trying, just like I am, to acclimate to a new normal. And in this unity, we also share the same foundational struggle — we have all never done this before.

We have all never suffered through a pandemic of this scale.

We have all never lived through one of the worst economic spirals of the century. We have all never experienced this quality of terror on a global level. We have all never seen so many lives taken, so many businesses foreclosed, so many hugs missed, so many gatherings celebrated alone.

Acknowledging the novelty of the situation feels like the first step to healing. This is a new normal we have never tried to navigate before, so this is going

to really suck while we try and figure this out. This is going to be hard. But, as we try and cope with this new normal, it’s okay to fail.

It’s okay to get frustrated at your lack of productivity, lonely from your dearth of socialization, lost because of your lack of structure — it’s okay to feel these things because this situation is new, and those feelings toward novelty are part of the human experience.

The important thing to me is that I try to learn and try to adapt.

I started a new hobby, finally mastered Zoom calls, reveled in my solitude, and practiced calm.

I try to nourish my body and my brain, set new routines for myself, stay active, and at times, sit with my discomfort and accept its existence in my life. And I am working on practicing empathy toward myself, and empathy toward others. I am trying to stop comparing suffering and give myself more room to love and breath. Because in the end, we are all struggling through this new normal together. This is my first time dealing with a pandemic.

[1] Phases of Disaster | SAMHSA. (n.d.). Retrieved May 28, 2020, from https://www.samhsa.gov/dtac/recoveringdisasters/phases-disaster [2] Arnberg, F. K., Gudmundsdóttir, R., Butwicka, A., Fang, F., Lichtenstein, P., Hultman, C. M., & Valdimarsdóttir, U. A. (2015). Psychiatric disorders and suicide attempts in Swedish survivors of the 2004 southeast Asia tsunami: a 5 year matched cohort study. The lancet. Psychiatry, 2(9), 817–824. https://doi.org/10.1016/S2215-0366(15)00124-8 [3] Jalloh, M. F., Li, W., Bunnell, R. E., Ethier, K. A., O’Leary, A., Hageman, K. M., Sengeh, P., Jalloh, M. B., Morgan, O., Hersey, S., Marston, B. J., Dafae, F., & Redd, J. T. (2018). Impact of Ebola experiences and risk perceptions on mental health in Sierra Leone, July 2015.

BMJ global health, 3(2), e000471. https://doi.org/10.1136/ bmjgh-2017-000471 [4] Morganstein, J. C., & Ursano, R. J. (2020). Ecological Disasters and Mental Health: Causes, Consequences, and Interventions. Frontiers in psychiatry, 11, 1. https://doi. org/10.3389/fpsyt.2020.00001 [5] Orui, M., Ueda, Y., Suzuki, Y., Maeda, M., Ohira, T., Yabe, H., & Yasumura, S. (2017). The Relationship between Starting to Drink and Psychological Distress, Sleep Disturbance after the Great East Japan Earthquake and Nuclear Disaster: The Fukushima Health Management Survey. International journal of environmental research and public health, 14(10), 1281. https://doi.org/10.3390/ ijerph14101281 [6] Mellman, T. A., David, D., Kulick-Bell, R., Hebding, J., & Nolan, B. (1995). Sleep disturbance and its relationship to psychiatric morbidity after Hurricane Andrew. The American journal of psychiatry.

[7] Galea, S., Ahern, J., Resnick, H., Kilpatrick, D., Bucuvalas, M., Gold, J., & Vlahov, D. (2002). Psychological sequelae of the September 11 terrorist attacks in New York City. The New England journal of medicine, 346(13), 982–987. https://doi.org/10.1056/NEJMsa013404

This is new.

Sarah Horowitz is a mental health advocate who speaks, writes and researches about mental health to reduce stigma and increase public awareness.

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Leveling the Playing Field

By Rania Abi Rafeh

On a regular day before the pandemic, walking the streets of New York City with my physical disability felt like a high-stakes video game.

seeing how the entire world has been impaired by a pandemic am I able to feel as though I am on the same playing field as an able-bodied person.

My right foot took the lead with a swift crooked step forward while my left leg scraped the pavement behind to catch up.

Step, beat, step, beat, step. My eyes darted from the noise of my shoes to the faces blurring past me. I could feel a slight breeze on my skin from each body skimming past me while hearing the plomp, plomp, plomp of feet behind me, so my right leg took bigger steps making my knee jut out even more to get ahead. In turn, my brown hair bounced around my face as my arched back puffed out my chest like a sail, while my hips turned in, causing my knees to want to kiss. I continued to dodge passersby as though I were Mario eluding a walking mushroom.

The city’s foot traffic during the pandemic is sparse to nonexistent, depending on the area.

Seeing the bare streets was jarring at first — I wouldn’t have been surprised to see tumbleweed rolling out of nowhere — but I came to appreciate the quietness.

I usually try to match the pace of people walking in all directions, but the pandemic allows me to walk the streets at my own pace. In turn, I enjoy the walks I take. For once, my feet don’t feel as rushed, and my shoulders are not pointy with tension — a refreshing feeling to have when moving one’s body takes significant effort.

COVID-19 has created an environment where everyone is at a disadvantage, not just the disability community. Only after

Having to quarantine and stay indoors has taken the pressure off of traveling in the city — an overwhelming task to do if you have a physical disability. The New York Times reports that New York City’s subways are insufficiently accessible: “Only

about a quarter of 472 stations in the city have elevators — one of the lowest percentages of any major transit.” If I were counting on using the MTA’s other service, Access-A-Ride, I’d constantly be waiting, my schedule isn’t built around that of the car service.

Zoom makes it easier for me to meet up with others, allowing me to be there without physically being present. Though I recognize that these circumstances are not realistically permanent, the transportation options available to me and the rest of the disability

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community in a COVID-free world are similarly impractical.

I have found a silver lining in the pandemic with regard to my walking disability. However, this shift in the playing field reminds me of society’s long-standing disregard of the disability community’s right to access. For years, people with disabilities have missed out on specific

aspects of living due to inadequate accessibility. Only with society’s current embrace of virtual life have the tables turned.

People with disabilities are now able to effectively participate in work and socialize from their own homes. While able-bodied people are upset about reduced mobility or the challenges of working remotely, many people with disabilities already faced

these obstacles on a daily basis.

The very fact that an individual with a physical disability, such as myself, can achieve an accessible lifestyle because of the pandemic exposes the reality that our current society is not designed with minority groups in mind.

Yet, by calling out the limitations that seek to negate our existence, we can start to fix the inequality society has created.

Rania Abi Rafeh is a freelance writer based in Manhattan, NY. Rania is dedicated to writing about diversity and inclusion in the realm of disabilities, sexuality, mental health, and media.

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Our New Normal

By Selma Sulejman

As I sit down and begin to compose this short piece, I realize how difficult it has become to formulate and thereby understand what the phrase “our new normal” means for so many people around the globe. This pandemic has impacted various facets of life, and how we navigate on a daily basis. What did society deem normal before COVID-19?

One can only imply that the greater population did not have to take significant precautions before going out for a simple walk, picking up groceries at the market, maintaining specific amount of distance while trying to complete essential tasks, catching a train to work that will demonstrate indifferences, grabbing a flight to see a loved one who may be ill and not knowing if the aviation service has been disrupted, and pondering about how rent, as well as tuition deadlines, will be met.

Now, this leaves you thinking, are these the only substantial factors

that presented a sense of normalcy prior to this universal outbreak? Absolutely not. There are countless elements that must be counted for such as how we went about obtaining a general doctor visit, being able to retain necessary medical supply without any financial and or systematic hardship, and moreover this vital asset of employment that allows us to live healthy as well as equitable lives.

Fast forward to the current crises we are all experiencing on an individual, yet collective manner.

Do we have the capability to identify what the mere meaning and or feeling of normal is at this given time? From my personal point of view, I can only attest that attending virtual activities, watching Netflix and or Disney plus with the nephew, reading both for pleasure and academia, spending a long time with the family, and praying and hoping for a positive shift in the days to come is what my new normal looks like right now.

“Our new normal” has demonstrated hurt, loss, uncertainties, strength, humanitykindness, adaptation, challenges, and this influence of willpower to move ahead with so many unknown contributing variables that will surely shape our social and economic interactions in the near future. Additionally, both educators and parents have illustrated leadership as well as support in the homeschooling process that a vast number of students had to embark on given such a short amount of time to adjust.

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On the same token, there are not enough words to express the gratitude towards all of the doctors, nurses, and every other healthcare worker that is out on the frontlines putting their best foot forward. As this pandemic seems to be diverging in ranging paths that being geographically and medically, we have to understand where we stand with

“our new normal.� Whether that means working from home, preparing social engagements through a virtual platform, cooking up a storm with your kids, cleaning, teaming up with likeminded people and developing assistive gear that is in high demand, and most importantly showing love and respect for one another.

;Emotions are diverse with so much occurring, so everyone is entitled to cry, vent, laugh, practice mindfulness, exercise, and other reflective methods that they may find helpful. I’m sending everyone hugs, positivity, hope, and love.

Selma Sulejman is a recent graduate of The CUNY School of Professional Studies. She advocates for people with disabilities, women, and other social justice topics.

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Navigating the COVID-19 Pandemic with a Disability

By Kendra Gottsleben

In the past, I have often wondered if I would be able to successfully work at a job remotely. Would I be able to create productive routines enabling me to get my work done or would it be too distracting working from home?

Being that I am very social with my coworkers I was leery that I wouldn’t be able to continue these relationships. Once COVID-19 was detected in South Dakota in the middle of March, my anxiety began to increase. I had heard about the impacts of COVID-19 in the media, and I knew it was only a matter of time that it would reach South Dakota. This was concerning for me as I was diagnosed with the rare disease Mucopolysaccharidosis Type VI (MPS VI) at the age of four years old. This condition affects my heart, lungs, eyes, and other vital organs and makes my body more susceptible to illnesses, especially COVID-19. In the wake of the pandemic I knew there was a chance I would be able to see just how successful I could be with working remotely.

My coworkers and I were eventually forced to work remotely; fortunately, we settled into this arrangement, and I felt

immense gratitude towards my boss. Even before our university told all staff and faculty to begin working from home, he came to me and said he wanted me safe and to start working from home.

This may seem not like a big deal to some, but for me it is. Having a boss that is aware enough to know their employees’ best interest for their health is something to aspire to. His leadership has been so reassuring for me. I feel incredibly blessed to have him as my current boss, especially trying to navigate uncharted territory during a pandemic. Leadership can make or break an organization, and he has it down.

With him at the helm I haven’t had to stress about my job during COVID-19 like so many others in society have.

Dealing with the emotions surrounding the possibility of contracting COVID-19 can be another stressor. I have been dealing with them by saying prayers and staying connected with others who are in the rare disease and disability space.

This can range from sharing how important it is for everyone to wear masks, social distance and stay home if one feels sick. This

is not just vital for people with rare diseases and disabilities or the elderly, it is essential for all of humanity. I am trying to also not become so fearful that it inhibits me from staying positive for myself and others. I do not want to lose myself and my outlook on life because of the pandemic, but I am realistic and know that if I were to come down with COVID-19 I would most likely die.

In recent days, I have found myself a little disheartened as I have seen people starting to gather in large groups once again as if there is not still a pandemic occurring in our world. I totally understand wanting to be having fun with friends and family at typical summer activities and events, but those are danger zones in my opinion. So, I have chosen to reduce my chances in contracting COVID-19 by not participating in such danger zones. I realize it is up to me and me alone to keep myself safe, so I remain at home. This weighs even more heavily on me now as I prepare for a heart surgery.

Undergoing such a procedure during a pandemic isn’t my ideal choice. A heart surgery alone has

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its risks, and adding COVID-19 doesn’t help any, but the operation must be done.

It can be challenging when I hear people say, “Oh yea I forgot about the whole COVID thing still going on!” “We all just need to get it and move on!” and “COVID is totally made up!” There is no guarantee that any of us, no matter our age, race, ethnicity or gender will be able to survive the illness. As I sit at home, those comments sometimes cut through me like a slap in the face. However, I understand that others have the right to their opinion, and I would never deny them that right. So, I am focusing on seeing positives that could possibly come out of the pandemic.

When I look towards the future, I like to be optimistic and see this pandemic possibly shifting our society in ways that perhaps benefit the rare disease and disability community. For example, many of us are or had been working from home, so businesses and organizations are seeing or saw how it is conceivable to have remote employees. This could allow for additional people with rare diseases or disabilities to become employed. Businesses and organizations were forced to adapt for all of their employees, and hopefully they will continue the creativity when considering new applicants.

Also, I hope the delivery or curbside options that were implemented by stores and restaurants will continue well after the pandemic. Such expansions help all of society currently, but they are especially beneficial for people who are unable to drive or lack access to reliable transportation. Likewise, I am hopeful we, as a human race, can become more kind and giving — taking time to actually talk and listen to one another when we walk or roll by.

I believe we will come out of this stronger. Well, that is my hope anyway.

Kendra Gottsleben is a Marketing Communication Specialist, author, and spokesperson on living a life with a rare disease and disability.

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