In this commentary, Gemima Rigby addresses the inaccessibility that neurodivergent people encounter when applying for Social Security Disability Insurance.
This commentary is part of the Voices of Disability Economic Justice Project, a partnership with TCF’s Disability Economic Justice Collaborative. Voices of Disability Economic Justice showcases disabled writers’ first-person perspectives on the economic issues that matter most to them.
Content note: this piece mentions suicide. If you or someone you know are in need of support, please consider the following resources:
National Suicide Prevention Lifeline: 1-800-273-8255
En Español: 1-888-628-9454
For people who are deaf/hard-of-hearing: 1-800-799-4889
Crisis Text Line: Text HOME to 741741
Follow me on this journey: You’re in your early 30s. You don’t have a job and can’t seem to hold one down. Any work you did in the past led to you quitting due to burnout, getting in trouble, or getting fired—but not because you were stealing or fighting or refusing to show up. In fact, the last job canned you over the phone, and for reasons you don’t entirely understand.
While you’re still trying to work, you’ve had multiple suicide attempts, including after this recent firing. You’ve been diagnosed with different disorders, been hospitalized multiple times, seen countless psychiatrists and therapists, been on numerous prescription drugs, and tried every therapy available to you, including electroconvulsive therapy.
At this point, you realize something has to give. It is safe to say that you’re no longer able to achieve “substantial gainful employment,” as the Social Security Administration (SSA) terms it. But with your extensive mental health history, you’ll get approved for Social Security Disability Insurance (SSDI) benefits when you apply, right?
Most who apply for disability benefits are initially turned down. In fact, as per the SSA, only about a third on average get approved on their first try applying for SSDI, and the percentage of those who are initially approved has decreased each year.
So, you get turned down. Must be a mistake, right? No. In fact, many who get turned down initially are usually turned down for “technical” reasons; their actual medical claims of their disability haven’t even been reviewed! But applying for disability-related benefits is no easy feat. Filling out pages detailing every doctor you’ve seen, every job you’ve done, your daily habits over years, and more is a daunting task for anyone. So, what if your disability hinders you from completing the paperwork alone? What if there is no one to help you and you can’t finish it on time?
These are just some of the challenges I’ve experienced. One of the disorders I have is Asperger’s syndrome, now referred to as Autism Spectrum Disorder. Autistic people get exhausted and overwhelmed very easily with intensive processes like benefits applications. We also often struggle with fine motor skills, experiencing disabilities such as dysgraphia that make it next to impossible to write legibly.
Sadly, the initial paperwork is just the beginning. Because most are denied, it has to be done again. For an Autistic person with mental health issues, this becomes invalidating and near traumatic. If I can’t work and pay my bills, but I’m told by way of denial of my benefits application that I can, what am I supposed to think? It feels like ableist gaslighting, and it makes me want to give up.
After more than a year during which I applied multiple times, researched and hired a lawyer, waited for a hearing and then was finally granted one with a judge, I got approved. I figured life was good and the hard stuff was over.
While I earned what is called “back pay,” and I was grateful for this and the lawyer who helped me win, she still took a portion of it.
Also, the disability benefit amount most get awarded is not based on the amount of bills they have or even the severity of the disability; it’s based on how many approved work credits you have. And determining this is more complicated than a math equation:
Most people who receive SSDI get between $800 and $1,500 per month. The most you can get is around $3,600 per month. But less than 10 percent earn that.
And even if the average American earned the top benefit amount per month, many spend that on mortgage alone.
I get somewhere between $400 and $700 in benefits per month. This is not usually even enough to rent a room each month, let alone pay for utilities, food, medical expenses, and more.
Since my benefits aren’t enough, I do the little work I am able to, like occasional freelance writing. And I still have to pay taxes on it. But the trouble with this is, if I make over a certain amount, I risk losing my benefits. And if I lose my benefits and don’t earn enough money, I am screwed.
Does our society actually care about disabled people at all? I have my doubts, when a system that is supposed to help the most vulnerable in our society not only fails, but appears to have been designed that way. It unjustly shuts out disabled people who need benefits, too often forcing us into shelters and streets, or even worse, toward risking our lives.