My Disability Accommodations Are Not Perks
“You are so lucky they let you sit on that stool.”
It’s a phrase I heard constantly at an old job, as I rang up customers, seated on a stool behind the cash register. Not a stool I wanted, but a stool I needed.
I have a disability
“Yeah, pretty lucky!” I’d say with a smile, because a 30-second interaction with a customer isn’t enough time to explain that I have the stool because I have a disability. It’s not enough time to explain the unbearable pain I experience if I stand for more than 20 minutes. It’s not enough time to explain that I would much, much rather be standing like the other employees. But I don’t have a choice.
And job hunting is a little different
Since my ankylosing spondylitis diagnosis, job hunting has been a little different. Unfortunately, most jobs that a 21-year-old student can work — serving jobs, retail jobs, or even just working in a grocery store — present challenges related to my AS. Instead of seeing a job I want and applying for it, I first have to consider if I am physically capable of doing that job, and if not, whether accommodations are possible. If I’m lucky, the employer will have a process in place for medical accommodations. Only after submitting paperwork and having meetings can I finally start a regular job that most people wouldn’t think twice about.
My medical accommodations are not perks
While I appreciate accommodating employers and I am grateful for the opportunity to work, I do not see these accommodations as special privileges or “perks”. They are simply adjustments that must be made so I can work — adjustments as simple as putting a stool behind a cash register. But able-bodied people often see these adjustments as something they don’t get, rather than something I need. For the entire time that I worked the cash register job, I had to laugh off comments from customers and coworkers, such as “You’re so lucky you don’t have to stand!” and “Why can’t I get one of those stools?”. None of these people knew how badly I wished to be standing on my feet, how badly I wished for the freedom of applying for and working any job.
They let us participate in society like able-bodied people
I’ve received similar comments in other areas of life, regarding the accommodations I receive for university exams or accommodations in theme parks, where people with disabilities can wait for a ride without physically standing in the line. No matter how you spin it, these accommodations are not “perks”. They are in place to allow people with disabilities to participate in a society built for able-bodied people. Why should I feel “lucky” to participate in society the same way everyone else can? For someone with a disability, it is already difficult and embarrassing to ask for accommodations. To be treated like we are looking for special treatment makes us feel ashamed for asking in the first place, and even further excluded from society.
Be grateful that you don't need them
I will go for the rest of my life requiring accommodations in the workplace and other settings. To anyone who thinks I’m “lucky” for receiving these accommodations, I’d like to say this — I think you’re pretty “lucky” to work without them.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?