by Melissa Bean Sterzick
I spent 52 years avoiding the label “disabled.” That’s a long time and a lot of muscle memory. It wasn’t easy, but over the course of this last year, I changed my mind about the label, learned to accept it, and took the enormous step of applying for federal disability benefits.
I have a congenital limb difference in my left arm, which ends just below the elbow. When I was a child, I learned that if you need help, you lose a chunk of your autonomy. The people helping you start to make decisions for you. They start defining you by your needs, and weighing the perceived burden of your limitations against their own needs and responsibilities. They may start to treat you as if you need help with everything, rather than just with some things. Inevitably, your perceptions and priorities become secondary to theirs.
It didn’t take me long to realize that needing help can cause people to restrict your activities, underestimate your capabilities, and doubt your ability to function in general. If I needed help carrying my lunch tray in the school cafeteria, people assumed I also wasn’t able to use the swings on the playground. As an adult, if I install a knob on my car’s steering wheel to make driving easier, people might think I should never be allowed to drive without it.
I’ve always had a lot of reasons to avoid needing help, so I figured out how to do most things for myself with one hand. I learned to tie my shoes, ride a bike, drive a stick-shift, cook, and more. I cared for my children on my own, played a lot of tennis and got really good at it, and enjoyed many other hobbies that required extra effort to accomplish with one hand. I spent my life compensating, and I’m not sorry I did. I loved all of it, and I made it look easy.
It really was easy, too—until it wasn’t.
A Breaking Point
I started to consider applying for benefits after a long bout of illness that started with ankle tendonitis, escalated with a rotator cuff strain, and ended with a diagnosed autoimmune condition. There were several dangerously adverse medication reactions thrown into the mix, as well. Throughout this sequence, my difficulty using crutches and other mobility devices caused problems. I overcame my aversion to asking for help because I had no choice. I could no longer deny the reality that I needed it.
I’d already been experiencing tendonitis in my right wrist, chronic strain on my right shoulder, a tilt in my spine, and arthritis in my right index finger – all overuse injuries from a life of compensating for my limb difference. But after I spent three months off my feet and faced the task of rehabilitating my left ankle and right shoulder simultaneously, my disability and its effects on my overall physical function became starkly obvious.
Before I could apply for disability benefits, I had to decipher which federal program fit my situation. One of them, Social Security Disability Insurance (SSDI), is connected to your employment history. It pays benefits if you spent a certain number of years in the workforce, have a disability that prevents you from working full-time, and paid Social Security taxes while you were employed. The other program, Supplemental Security Income (SSI), is unrelated to your work history. It provides funds for food, clothing, and housing if you are 65 or older or have a disability.
I met all the requirements to qualify for SSDI, so I decided to apply. But the process was time-consuming and not user friendly. Though some effort has been made to simplify the interface, this is a still a government program, and the application process screams bureaucracy. You create an account and begin an hours-long exercise in data entry that no job experience or degree can prepare you to do. Tons of personal information, employment information, and medical documentation are required in past, present, and future tenses.
I submitted 80 pages of medical records showing that my health conditions had been thoroughly checked, treated, and medicated. I shared bloodwork, pharmacy receipts, MRI results, and so on. I listed all the physicians I’ve seen during the last 10 years, why I saw them, which health issues they addressed, and every diagnosis.
I had to show evidence that I had attempted, unsuccessfully, to benefit from prosthetic devices, because the two-armed individual processing my application might just think all my problems could be solved by a biomechanical hand. I was obliged to show the months of occupational therapy and physical therapy I received for my right hand and arm, as well as the physical therapy for my back pain to prove my conditions are chronic.
I estimate that it took about 30 hours to gather all my documents, scan or copy them for submission, and assemble all of my medical data in detail. There are professionals out there who you can hire to do this work for you, but I didn’t choose that route. I finished my application in July of this year and was told it would take six months to receive a decision. After four months, I received a set of additional documents asking further questions about my physical limitations. Those took another four hours to complete.
While it seems obvious to me that I can no longer compensate for my limb difference the way I used to, the people making the benefit decisions won’t necessarily see it that way. The purpose of the application is to make them see.
Waiting for an Answer
I felt like I did a good job presenting my case, but there are no promises. If you’re thinking of applying for SSDI or any type of disability benefit, start gathering your documents immediately. Organize them by date and label them with sticky notes summarizing their contents. Don’t leave out anything.
Even though I haven’t been approved yet, I have to abide by SSDI’s startlingly low income cap while my application is pending. To remain eligible, I have to adhere to the strict limitations on how much I can earn through part-time or freelance employment. If I exceed it, I’ll no longer qualify for benefits, which will leave me worse off financially. This difficult bargain is widely known as the “benefits cliff.” I’ve thought long and hard about how I will live on the designated amount, but it’s still better than the alternative.
Emotionally, it wasn’t easy for me to admit that I need help. But I applied for SSDI because it is a physical and financial necessity. I’m grateful to say I am finally able to separate my worth from my self-sufficiency.
I don’t have to ask for a lot of help, but I do need those around me to expect less of me. I need them to accept that I can only work part time, must avoid tasks that cause me pain, and will use helpful tools and gadgets more often than I used to. SSDI benefits address my needs by reducing the amount of time I have to spend at a desk, on a computer, and behind the wheel of my car.
As daily tasks became harder and chronic pain intensified, I chose to look at myself with total honesty. I’m not being dramatic when I argue that, without help, my one hand won’t last as long as the rest of me. I’m not imagining the fact that I have to take it easy on my body if I want to continue to be healthy and independent. I am whole, capable, and worthwhile, but I have a disability. I’m finally able to say that, yes, I need help—and that I deserve it.