Everybody wishes to have a healthy, normal life, and like everyone else, I expected a fully healthy, normal life too. So, when I was diagnosed with a rare genetic disease that robbed me of the ability to walk, I was naturally devastated, unsettled, and fearful about my future.  

It was difficult for me to cope with the limitations, defy challenges, change people’s precepts about people with disabilities (PWDs), find love, and build a rewarding life. It took a long time and multiple trials and errors for me to find my proverbial footing. However, I overcame the mental and physical burden my disability has caused, saw life from a different perspective, and not only survived but thrived on my own terms. My experience may help others who “walk a mile in my shoes” to improve their sense of empowerment and independence and transform their outlook on life.   

Accept, identify, and build your skills, and give your best to WHAT YOU CAN STILL DO. 

As my physical health improved and I found ways to get around my disabilities, I started blogging, writing op-eds for local newspapers, and freelancing online. I know I write well, so I capitalized and honed my writing skills. Eventually, an employment opportunity came knocking from Genashtim Pte Ltd, a 100% remote for-profit social enterprise. I learned about remote work and how it’s helping PWDs like me achieve financial independence.  

I was fortunate because I was already doing remote work so working from home was literally second nature. I settled into this work mode, took company-funded courses, and learned from every criticism. I navigated my work according to my manager, team leader, and teammates’ guidance. 

Mourn your loss but don’t dwell on it.  

It’s natural to grieve over the loss of certain physical functions because it also means losing access to certain places, burdening others, and cancelation of other life plans like working in a physical office, traveling, finding love, getting married, and having children. 

I didn’t try to ignore or suppress my feelings. Most importantly, I conditioned myself not to feel jealous when my friends and relatives carry on with life events I was missing on. Expecting the world to halt because I can’t walk isn’t realistic. I am also making progress, but they’re not immediately obvious. As I see it, there is no set and ideal life template. People should live the way they like and make the best of the unfortunate incidents that come with life.  

After my late diagnosis at the age of 19, I underwent a roller coaster of emotions. The fact that my illness also manifested psychological problems doesn’t help. But I knew I needed to get a grip on myself if I were to do something to better my life and health.  

In time, the dips of my roller coaster emotions lessened, and I found my new normal. I’m also thankful that remote work and work-from-home prevailed as legit work models embracing special-needs workers, diversity, and inclusion rather than becoming a transitory way to cope with the global lockdowns triggered by the pandemic. 

As a human who incurred unbearable loss, I feel anger, sadness, chagrin, and dejection from time to time. Working helps me stabilize myself as I channel all the energy such negative emotions generate into doing my job diligently.  

Come to terms with your new reality. 

Wishing to return to my pre-disability state won’t help me get ahead. It was tough, but I had to let go of my fiercely independent past self and accept my present reality that will likely extend into the future. 

Initially, there was no confidence and assurance that I could build a happy, meaningful, and productive life. I never thought I would find employment, earn, or study again. But I did all that and more. My remote colleagues with various disabilities taught me life is about effort, perspective, and moving on.  

You can only move forward when you let go of the past. A “broken body” is not the end of happiness, and in the same way an “able-body” does not always equate to happiness. 

I also took the time to learn as much as I could about my rare medical condition. Obsessing over medical information about my illness may seem counterproductive, however, I can only care for myself better, perform well at work, and consolidate relationships if I know my disease’s symptoms, progression, and complications.  

Maintenance therapies, medicines, surgeries, and other medical interventions for chronic illnesses and disabilities advance all the time. Updating myself with such advancements allows me to consult my doctors and weigh my prospects of alleviating my debilitating symptoms and perhaps even regaining some of my physical functions. 

Being a realist about one’s disability is not a sign of resignation to one’s unfortunate condition but a step towards betterment, where PWDs can find ways to get healthier and be utilitarian.  

Facilities for PWDs are not ubiquitous where I live. While it’s the government’s responsibility to provide public amenities for the disabled, I have the power to minimize my disability’s impact on my life in my living space. I renovated my home to accommodate my special needs, such as ramps and a spacious bathroom where I can move easily. 

Surround yourself with people and other PWDs who understand your struggles. 

Joining a disability support group is one of the best ways to combat loneliness and isolation. Meeting people with similar challenges will be relatable and valuable for your collective consciousness about your disability.  

Besides disability support, it’s also important to have friends who understand and accept you. Even more important is having friends who don’t treat you differently because of your disability. 

Before joining Genashtim, I always felt like I was sticking out like a sore thumb. Although I still feel like an oddball, especially when I attend family functions and go to the beach, theater, shopping malls, and other places, I don’t feel out of place when I work, and it’s a great confidence booster for me.  

Genashtim employs PWDs, refugees, retirees, LGBTQAI+, minorities, women in oppressed environments, people with comorbidities, and others from disadvantaged communities. My colleagues’ stories of triumph over adversity provided me with a sense of belongingness to this world as much as they do. 

Although I have yet to meet my colleagues in person, I felt understood, especially by my PWD co-workers. At Genashtim, everyone is kind, courteous, and bubbly with effervescent positivity – it’s such a healthy and happy work environment.  

As I suffer from the complications of my illness from time to time, Genashtim’s Total Flexible Initiative allows me to take time off to regain my health and return to work stronger and more energized. Launched in February 2022, the leave policy is a boon, provided employees don’t misuse them. 

Take advantage of disability aids and technology to find your “new independence.” 

Devices such as prosthetics, walking aids, wheelchairs, and ergonomic and posture support furniture are not confines, they are liberators. They help PWDs gain a semblance of independence by enhancing their productivity through paid work. 

I have quadriplegic, hearing-impaired, and visually impaired colleagues who are incredibly effective and prompt at work. Assistive technology like speech recognition software, adaptive keyboards and mice, screen readers, and magnifiers help my PWD colleagues perform their tasks. 

One of my colleagues with cerebral palsy, Nadia Saidi, can only move one finger. She uses her mouse upside down and basically runs Genashtim’s Founder and CEO, Thomas Ng’s professional schedules. This is a perfect example of adapting to the environment by doing things differently while letting inhibitions, embarrassment, and stigma about the methods and aids used to accomplish tasks go; it’s tough and takes time but imperative. PWDs are not defined by the aids they use – they are people who belong to the world like everyone else. 

Accept support, not sympathy. 

Sympathy and support are two very different things. I believe that sympathy disables, and support enables. 

Genashtim employs those who face almost insurmountable challenges to find sustainable, long-term, and gainful employment due to their disadvantageous status. 70% of the B-Corp-certified, ESG-compliant social enterprise’s employees are disabled. 

Thomas makes it clear from the beginning that the company doesn’t operate on sympathy but on a performance basis. We don’t make it a point to disclose that most of our staff members are PWDs to our clients because we compete in a global market. And competitive markets are not a place to expect sympathy. If we are to prove that we are equally capable with able-bodied competitors, we must up our ante and not use our disability card to get ahead. 

My work at Genashtim supports me so I must do my best to support the company and its growth. Complacency and mediocrity are unacceptable. If I need a break, I take it. Despite being on leave, I often check my work-related emails and work on tasks. I compartmentalize my tasks and ensure that I am always ahead of time. Being early also helps me double-check to detect mistakes before submitting the work to clients. This mutual support between performance-centric employees and performance-oriented enterprise helped Genashtim acquire a stronghold of more than 150 employees across all continents except Antarctica. Meritocracy, self-motivation, self-discipline, and a growth mindset are Genashtim’s work culture. 

Accepting support or help doesn’t make PWDs weak. Able-bodied people need help and support too. However, low-context communication between PWDs and their support persons and helpers is important at social and professional levels. This is because sometimes people can get overzealous in wanting to help PWDs when the PWDs would like to do or can do something by themselves. This can translate as sympathy for the PWDs and incur bad feelings because of the misconstrued perception that PWDs can’t do anything. 

It’s easy to slip into depression or bitterness after acquiring physical disabilities. Talking to a mental health professional can make a huge difference in keeping mental equilibrium or restoring it. With the right therapist, you can process the changes and challenges you’re undergoing, work through your grief, and reframe your outlook more positively and realistically. 

Prioritize your health, eat well, and follow your doctor’s orders. 

My rare and debilitating medical condition makes health even more important. The medicines I ingest to alleviate the symptoms of my illness have side effects. This double-edged sword is tricky, so I am extra careful about how my body responds to the disease and its medicinal ramifications. 

However, the golden rules still apply to me – a nutrition-specific diet, plenty of sleep, proper stress management, and exercise.  

I do things differently because I can’t jog, run the treadmill, or cook an elaborate meal. I have dietary restrictions and am a lark rather than an owl. It’s all about adjusting and making do with what I have.  

I sometimes have migraine-induced jaw pain that causes pain when chewing food, so instead of eating fruits, I puree them and drink them. It’s easier to digest as well. I cut down on fat, salt, sugar, processed food, junk food, gassy drinks, and fast food, and stay hydrated and well-rested to stave other health issues like obesity, heart disease, diabetes, and hypertension. I also avoid foods with high copper content because my disease is related to the dysfunction of copper metabolism. I indulge in self-care, which includes skincare and mental stress reduction by not being online after work hours. I also stopped watching and scrolling reels on social media because I felt my attention span shortening and started reading books again. 

Remind yourself that you can still control your health and well-being despite your disability. Get creative with your diet, sleeping routines and patterns, stress-relieving activities, and physical exercise. If you have any concerns about your health, seek your doctor’s advice. 

Forgive and accept what happened so you can move to the next step in your life. 

Bad things like disability and illness can strike due to negligence, rash behavior, lack of medical knowledge, and timely treatment. At times, you can’t rationalize it at all and questions like “Why me? What did I do to deserve this?” arise. Often, there is no answer. Regret can cripple your mind more than disability affects your body and it’s easy to wallow in self-pity and the “what could have been.” However, you must take the initiative to rise above by forgiving yourself and those who caused your mishap and accept the turn of events. 

Self-blame and resentment towards the people who caused your disability directly or indirectly are normal. Should you let them fester, though, they will cost you your mental health, disabling you from doing what you must do to heal and get ahead with the things you can and ought to do.   

To be better, it’s best to literally “Let it go.” It also makes you a bigger person as you find new paths to move ahead and embark on the journey of becoming the best version of yourself. 

By working remotely, you can find a coping mechanism to deal with people who don’t know better about your disability, your ability despite disability, and the things you do. 

Disability awareness is still utterly lacking. People still rationalize disabilities with their beliefs and precepts rather than seeing such disabilities from a medical, scientific, and social justice viewpoint. 

This can come across as insensitive and aggrieving to PWDs, making them feel discounted and even responsible for their own grievous medical conditions.  

As a PWD, I come across skepticism, impertinent curiosity, and judgment from people. For my self-preservation and self-confidence, I don’t let what they say get to my heart – it’s my coping mechanism. I was told that I couldn’t use a computer. I now work on a computer and earn. I was told that I couldn’t use a touch-screen phone. I bought one using the money I earned through online freelancing and taught my mom how to use it. I didn’t do it to prove naysayers wrong. I did it for my own life progression, the need of the hour, and self-satisfaction. It gives me a purpose to continue living – suicidal thoughts don’t haunt me as much as they used to. 

Working from home is a real job that requires the same effort as it does in an on-site workplace. While Genashtim accommodates its employees’ special needs, we are still expected to show up and give our best every working hour. When I said that I work from home, the people at the social welfare office had a hard time understanding that my work scope is no different from someone who works on-site. They also couldn’t understand “flexible work” that benefits PWDs. Even non-medical government employees whose profession involves engaging with PWDs can’t understand what remote work is and how it’s providing PWDs better lives. In that case, it’s hardly surprising how much the average person understands remote work for PWDs. 

However, the light at the end of the tunnel is palpable – Gen Y and Gen Z are more receptive and knowledgeable about PWDs and remote work. They are also eager about technology and the difference it makes in the lives of diverse people. My cousin’s 10 years old daughter was curious about me when we met for the first time. My cousin took the time to explain to his child about me; then, she sat on my lap and chatted with me. Previously, my relatives used me as a boogeyman to get their young children to behave. I can see the transition. 

My nephews and nieces are also curious about how I work from home. I showed them my workstation and explained how it works as they listened with interest. So, it’s important to keep educating people about different disabilities, how remote work helps them, and assistive technological advancements to change how PWDs are perceived. 

Key takeaways 

Disability just means doing things differently. I’d like to stress the revolutionary idea that no one is disabled. It’s just the lack of will to include everyone living in the world to access the world equally.  

Independence is subjective. I can’t use the washroom without help. But I paid for my mom’s eye surgery. I am dependent due to my disability. I am also independent despite my disability.  

Remote work is a boon – it creates employment opportunities for PWDs. While it’s true that the pandemic boosted remote work as a viable work mode, efforts must be made for more encompassing disability inclusion in the workforce in general.  

Planning for the uncertain future is vital for PWDs. Saving money, identifying NEEDS and WANTS, and building a retirement plan amid skyrocketing living costs are my financial agendas within what I earn.  

Having a growth mindset and finding new ways to do things to improve life and work performance apply to PWDs as well. Remember that you’re your own competition and that it’s okay to move slowly; it only matters that you don’t stop.  

It’s possible to overcome physical limitations due to disabilities, be independent in the ways you can, form new vantage points, and enjoy life. Take it one day at a time and be a realist with rational thinking. You will get there by taking a different route and forging your own path. Don’t forget to enjoy the ride and learn from it! 

JEDI Jobs, an online remote job portal focusing on hiring PWDs, offers remote work vacancies from global remote employers. Register here now and apply for a sustainable, long-term, and special-needs-centric remote position.