Staying the course

Houstonians with disabilities offer insight on coronavirus isolation

In the midst of a pandemic, examples of mental fortitude and courage can be found. Yet social media is filled with anxious people wondering who is a coronavirus carrier, who can be trusted, how to get through this time of relative isolation. We are social creatures, so the longer shelter-in-place orders stretch on, the more our untested isolation skills will be frayed.

Some know all too well what it takes to cope with isolation: Houstonians with disabilities. For much or all of their lives, those with a wide variety of conditions have had to retreat because their bodies or minds required it for their health, or a mistrusting society gave them the side eye and made them feel othered.

People with disabilities are in a unique position to offer advice to Greater Houston residents who are new to feelings of isolation and a shaky sense of well-being. The Houston Chronicle’s A Special World asked six such individuals for their perspective on resilience in the era of COVID-19. Here are their responses.

Jeff Bourns

38, father and former adaptive tennis professional; birth defect resulting in amputation above right knee and tethered spinal cord syndrome diagnosed in childhood, neurological and immunodeficiencies

During these times and other disruptions of daily life, I have had to remember to pace myself. I take a clay-court mentality: Life is slower and requires patience!

Growing up living with a disability taught me the importance of keeping a positive mindset. It can prove challenging — especially, in my case, during disruptions that can result from medical complications.

I have learned to acknowledge that there will be things that are out of my control. While I may not be able to do certain things anymore, I am still able to do other things that make me happy. In addition, make sure to be open with others, no matter how humbling. There is definitely a balancing act of self-reliance with when to ask for help.

Something prevalent in the adaptive community that others may be experiencing for the first time, or at a more extreme level than before, are feelings of loneliness from new social distancing guidelines. It can be very taxing, mentally and emotionally. It is OK to talk about your feelings. I have found seeking help from a licensed therapist as well as confiding in a friend or family member very helpful. You are not alone.

I hope that after we begin to settle into the new normal, we all have a new sense of self, life and humility to continue to be better humans.

Adam Butts

40, IT professional for the Census Bureau who also analyzes convictleasing historical research data for the Texas Criminal Justice Coalition; autism (Asperger’s syndrome) diagnosis at 29

“For a crowd is not company; and faces are but a gallery of pictures; and talk but a tinkling cymbal, where there is no love.”

This was spoken by Francis Bacon in the 16th century. People with disabilities often find themselves in exile in their own homeland. Thanks to the coronavirus, people will get a deeper insight into what one who is isolated may feel like — left out for no other reason than being different.

It’s like Quasimodo, the main character in “The Hunchback of Notre Dame.” From a distance, he would get to see his neighbors celebrate, engage, interact and he wasn’t welcomed. The blessing in this time is to view life from a different perspective, and what you do with that information is entirely up to you.

My hope and prayer is everyone will grow from this experience. My advice is to celebrate and give thanks.

Sebastian Driver

19, native Houstonian, performer with Theatre Under The Stars’ The River and disability advocate who has appeared on “The View” and “Great Day Houston”; cerebral palsy from premature birth

I don’t allow my disability to define me in or out of these unusual times that we find ourselves in right now.

My life has thrown me many curveballs, but the best way I know how to deal with them is to take it one day at a time and use it to my advantage. To lift me up and try harder the next time. Even through these challenging times, we must be as strong as we can and don’t let it bring you down.

As someone in the special-needs community, I think the one thing that all of us, even typical people, are struggling with is life without a schedule. Filling your days with activities that you enjoy at home seems to make the days go by faster. Yes, it’s been challenging through this new normal, but I really hope we learn to be more compassionate to others and appreciate the little things a lot more.

Lex Frieden

71, directs the independent living research program at TIRR Memorial Hermann and is professor of biomedical informatics and rehabilitation at UTHealth, as a policy expert was key in drafting the Americans with Disabilities Act; spinal cord injury

in college

In some respects, people with disabilities are better prepared to shelter in place than those without disabilities. More than two-thirds of people with disabilities were unemployed before the pandemic struck; more than half live below the poverty line; and many have limited transportation options. For these reasons and more, people with disabilities are generally accustomed to spending more time at home than other people.

People with disabilities are typically resilient, but this virus is testing all of us.

Practicing Stay Home and Stay Safe may create feelings of isolation and loneliness. Those of us with disabilities who have faced these sensations before would suggest: maintain a regular daily schedule; don’t make a habit of sleeping in each day; put limits on your workday just as you would if you were at your ordinary workplace; if you can’t do your work at home, adopt a hobby or take an online educational course; get outside at least once a day and exercise; use a web meeting platform like Zoom to meet with a family group or friends; and limit online and TV bingeing — try reading a book. One other possibility no one should ignore: Consult an online mental health counselor or therapist for professional assistance coping.

Maria R. Palacios

54, Houston disability activist, author, artist and professional public presenter known as “the Goddess on Wheels”; disabled because of childhood polio

As COVID-19 forces all of us into isolation, society begins to adapt in order to survive. Social contact has moved to an online platform where virtual hugs will have to be soothing enough, and learning to navigate life almost entirely from home slowly begins to feel like the new normal.

For many people with significant disabilities, this has been the “normal” for their entire lives. We have been experts at surviving isolation. We have been experts in constructing networks of support and solidarity, existing in our disabled bodies while building bridges and communities whether we realize it or not. We have, all along, known how to endure the silence and invisibility imposed upon our disabled lives.

When people say there is no precedent to what they are having to live right now, they must remember that disabled people’s struggle for social inclusion — our experience with having been isolated, shunned, silenced and sentenced to social invisibility — is the precedent.

And what do we say to the nondisabled world that feels the blues of social distancing and isolation? Don’t worry. We got you. You can lean on us, and learn from our survival.

Julie Truong

32, architectural designer at PDR Corp.; autism (Asperger’s syndrome) diagnosis at 27

I have autism and while I do enjoy being social, sometimes the outside world can be overwhelming. As a result, I retreat to my comfort zone. I have developed ways to cope in isolation. My autism superpower is my interest in art. Art is a healthy outlet and a constant companion.

In addition to having interests, I have a strong support system. No matter how short the correspondence, through technology we can feel less alone. I am transitioning to working from home. First, I had to find a work location in my apartment with minimal distractions and optimal natural lighting. (Besides) workspace, I developed new daily routines, which can be a challenge for many on the (autism) spectrum.

Take it one day at a time. Focusing on your routine and accomplishing your small goals can give you purpose.

Erik Paul Pictures Jeff Bourns likens the patience needed to get through the coronavirus pandemic to that needed on a slow tennis-court surface.

Philip Thomas / Spectrum Fusion Adam Butts hopes the coronavirus-induced isolation leads to a greater understanding of life for people with disabilities such as autism.

John F. Hartman Nondisabled people feeling the blues of social distancing can lean on and learn from those with disabilities, Maria R. Palacios says.

Spectrum Fusion Julie Truong suggests an outlet such as art and developing new routines to cope with isolation during the coronavirus pandemic.

Simply Photography According to Sebastian Driver, it’s important for everyone to stay as strong as possible during the challenging times.

Courtesy photo Lex Frieden says those with disabilities are more accustomed to spending time at home than others, but the novel coronavirus poses new challenges.