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 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.

Staying Positive During COVID-19

By Lizzie Gray

2019 and 2020 were shaping up to be wonderful years. I got my Associate’s Degree in Human Services from Massasoit Community College in May 2019. In the fall, 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 part-time job in the main office of my synagogue doing 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.

Drum roll please…. In March 2020, along came the invisible devil– Covid-19. The State House closed, the Temple 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 3 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. Second, I did 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. Third, I decided to use my time taking an online class to pursue my bachelor’s degree and I am happy to say, I got accepted to Bridgewater State University!

I am looking forward to seeing what the next chapter holds for me at this unprecedented time. After all, we are all in this together.

Traveling as a Blind Person Will Look Different After This Pandemic

By James Rath

My name is James Rath and I’ve been legally blind since birth. I’m a filmmaker and use my skills to share stories from within the disabled 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 white-cane 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 at large that we’d be facing, I had taken a last-minute trip to Istanbul, Turkey. Along with my film making 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 to share accessible resources for entertainment, news updates, connecting with others, and students. 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 would be an appropriate time to talk about travel. To be honest, unfortunately, I still don’t think we’ve gotten to that point 100%, 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 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 disabled community as a whole when implementing these measures. I’m afraid much progress we’ve made to travel independently with humanising accommodations will take a step back for the foreseeable future.

How to Find the Silver Lining During the Coronavirus Pandemic

By Marisa Parker

For me, finding the silver lining in the coronavirus pandemic can be difficult. I find that the constant flow of coronavirus news on social media platforms is the primary reason why finding the silver lining in the coronavirus 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 coronavirus pandemic due to the frequency of social media posts surrounding the coronavirus 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 coronavirus pandemic? Here are some tips that helped me find the silver lining during these times. There are multiple ways in which people can decrease their time spent using screens and social media platforms while remaining positive during the coronavirus pandemic. 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 find that staying off of social media platforms after work hours reduces anxiety as well. Engaging in meaningful and fulfilling activities outside of work, such as going for walks outside, reading books, and listening to podcasts that you enjoy also 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.

Interning at a Top Tech Company as a Person with a Disability

By Meenakshi Das

When I changed my major to Computer Science in 2015, never did I think I would get the opportunity to intern for a company like Microsoft. Growing up watching television and movies, they always portrayed successful people who worked at big companies as able-bodied, and  who spoke extremely fluently. I was diagnosed with a speech disability, specifically a stutter, at the age of 5. Naturally, I never thought I would fit in and did not see myself as working at big corporations. I didn’t think I would be accommodated or accepted. Things started to change for me when I went to college. I discovered organizations such as the Lime Connect, Disability:IN etc. who worked for supporting college students with disabilities land jobs and internships in the corporate world. I found supportive mentors and professors in college who encouraged me to pursue my passions and not let my disability stop me.

According to a report by Accenture in coordination with AAPD and Disability:IN, many US organizations have started to successfully employ people with disabilities and develop their disability inclusion programs. The report also states that the GDP could get a boost of 25$ billion if just one percent more of people with disabilities join the workforce! Looking at such positive reports and with the support of my mentors, I decided to apply to my dream companies. Through networking at a conference, I received an interview for a software engineering internship at Microsoft. I studied extremely hard and in October 2019, received an internship offer from them.

While interviewing at Microsoft and other companies, I received accommodations for the interviews. Disability Disclosure is a personal choice for a lot of people but for me, as a person with a speech disability, it has always been beneficial for me to disclose. In my earlier years, I would try to hide my stutter and a couple of interviewers actually thought I didn’t know how to speak English.

Microsoft final round interviews for software engineering internships were in person – so I asked and received accommodations to answer behavioral questions via a shared google doc. This way interviewers could see what I am typing in real time. For coding questions, I used the whiteboard. I tend to stutter less if I am writing and speaking at the same time, so the white-boarding approach worked best for me. This brings me to an important point. Accommodations vary largely and there is not a set rule for them. You can mix and match a variety of reasonable accommodations and see what works best for you!

Due to the COVID-19 pandemic, the internship was made virtual so I and my team had to communicate over Microsoft Teams. I had a really supportive mentor and manager which made interning with a disability very comfortable. I normally communicated over chat, and during on-call team meetings I used the ‘raise-hand’ feature and/or typed in the chat box in Teams to express my views. Both worked well and my thoughts and opinions were always respected. At the end of the internship, we interns had to demo our work to the higher ups and I even received extra time for my presentation.

In all, I had a great experience interning virtually at Microsoft. I am looking forward to starting full time there next July! If you had told me five years back that I would intern at a place like Microsoft, I would have probably laughed and never believed I was capable of doing so. However, it did happen. My personal efforts, in addition to companies making their hiring practices more inclusive, made my goals come to life. Thank you to all disability advocates who have fought and are fighting for us.

One thing I would like to see is such policies being implemented at smaller companies as well as I have heard people not always having good experiences. Big companies tend to have the expertise and budget to make changes to their hiring practices, but this seems to be missing from many small companies. I’d love to work together to make these changes happen!

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, 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 now 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 well-being 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. In the following paragraphs, I will highlight various 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 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 don’t go according to plan.

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’s 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.

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 disabled 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 disabled students have always been experts at meandering through “uncertain times” due to their resilience in handling non-compliant ADA standards, accommodation denials, and health emergencies.

Disabled students’ lives are uncertain. From the quickly changing health symptoms to societal biases encountered, disabled students are constantly adapting to uncertainty. 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.

Students with Disabilities During Coronavirus

By Lucy Meyer

My name is 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 have been doing my best to stay busy and positive. I have 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 have 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)!

Oh, one more thing, as a real Zoomer now, I have 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!