Hiring Me Was the Easy Part
Hiring someone with a disability is only the beginning.
Jonathan Ramos is the creator of the blog 'Me, Myself, and MS', where he writes about life, family, mental health, and living with Multiple Sclerosis. His work combines vulnerability, humor, and real-life experiences to help others feel less alone in their own struggles.
When I was first diagnosed with multiple sclerosis, one of my first thoughts was surprisingly practical:
How long will I be able to keep working?
My symptoms weren’t as severe then as they are today, but they were already changing my life. My gait was different. My endurance was changing. Then I became familiar with something called Uhthoff’s phenomenon, a temporary worsening of MS symptoms when body temperature rises.
For me, heat can trigger an intense itching and crawling sensation that feels like fire ants underneath my skin. It’s about as pleasant as it sounds. Still, I kept working.
Part of that decision was personal. A large part was financial. I had a daughter in college, a family to support, bills to pay and a chronic illness that wasn’t exactly offering a discount for the inconvenience.Leaving the workforce simply wasn’t a realistic option for me.
Then COVID changed something.
When Work From Home Worked. During the pandemic, I worked from home and noticed a significant difference. I had more energy. I wasn’t as tired. My brain fog wasn’t as noticeable. I wasn’t forgetting what I wanted to say halfway through a sentence as often. And I was still doing my job.
That’s when I began understanding something I hadn’t considered before becoming disabled: Sometimes getting to work requires almost as much energy as doing the work.
My workday now begins around 5 a.m. I need that time because I don’t know what kind of morning my body has planned for me.
How are my legs?
How is my balance?
How much energy do I have?
Then I feed the cats, brush my teeth, make coffee, groom myself, take my medications, get dressed and handle the other glamorous morning activities nobody needs described on the internet.
Sometimes I need a break after getting ready. That’s before I’ve even left home.Then comes transportation. Will my ride arrive on time? Will the trip take one hour or two? Will the vehicle properly accommodate my wheelchair? Will I get a good driver or one of the “colorful characters” I’ve encountered over the years?
By the time I arrive at work, I’ve already spent physical and mental energy simply getting there. That’s the part of disability employment people don’t always see. Asking for Help Without Asking for Less.
For years, I struggled with the idea of requesting workplace accommodations. I spent 16 years with my previous employer. I knew my job. I knew the people. I knew the systems. I was good at what I did.
If ego had a résumé, mine was impressive. Then MS humbled me. As my symptoms progressed, I started questioning whether asking for flexibility meant admitting I couldn’t do my job.
It doesn’t. I eventually left that employer and started somewhere new.
The job changed.
MS didn’t.
Today, I’m going through the accommodation process again. I’m requesting two work-from-home days. I’m working with my neurologist and Human Resources to document how MS affects my mobility, fatigue, endurance and commute. I don’t know whether my request will be approved. But I know why I’m asking. I’m not asking to work less. I’m asking for a structure that helps me continue working. There’s an important difference.
Reasonable Accommodation Isn’t Lowering Expectations. Under the Americans with Disabilities Act, reasonable accommodations are workplace changes that help qualified employees with disabilities perform essential job functions or have equal access to employment opportunities. Depending on the job and individual circumstances, accommodations might include modified schedules, accessible equipment, workplace changes or telework.
That doesn’t mean every requested accommodation is automatically approved. Employers and employees generally engage in an individualized process to determine what accommodation is effective and reasonable.
But accommodation shouldn’t automatically be confused with lower expectations. I don’t want lower expectations. I want a fair opportunity to meet them.
That’s why National Disability Employment Awareness Month matters to me. Hiring someone with a disability is only the beginning.
Real inclusion also means creating an environment where disabled employees have a fair opportunity to stay employed, grow, learn, contribute and succeed.
Sometimes that means accessible equipment.
Sometimes it’s flexibility.
Sometimes it’s allowing an employee to work differently while still holding them accountable for the work.
And sometimes it begins with an employee being willing to ask.
When Is the Right Time?
I spent years wondering when the “right time” was to request an accommodation.
I think I had the question backward.
The right time isn’t necessarily when you can no longer function.
It isn’t after you’ve exhausted yourself proving you can handle everything without help.
And it shouldn’t require waiting until your performance begins suffering.
For me, the right time is when I recognize that an adjustment might help me continue doing my job effectively.
That’s where I am today.
If my accommodation is approved, working remotely two days a week would reduce some of the physical demands of commuting and preserve more of my energy for my actual job.
If it isn’t, I’ll have decisions to make about what kind of workplace fits the reality of my disability.
I hope I don’t have to leave. I like my job, and apparently getting paid remains one of my family’s favorite features of my employment.
I also understand my body better today than I did when I was diagnosed.
There might eventually be a day when they have to roll me into the office on some elaborate bed with wheels.
We’ll discuss the dress code when we get there.
For now, I’m working.
I’m contributing.
I’m adapting.
And I’m finally learning that asking for an accommodation doesn’t mean I can’t do my job. Sometimes it’s what helps me keep doing it. To me, that’s what disability employment awareness should be about. Not simply giving people with disabilities jobs. Giving us a fair opportunity to build careers.
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