Disability and Privilege

Sometimes even physicians look at me askance when they realize I am on disability. I’ve been given stares of absolute contempt and disgust by front office staff and nurses when they see my Medicare card. Audiologists and neurologists understand what I am going through. But some doctors outside of audiology and neurology have a hard time understanding why my auditory processing disorder or APD and hyperacusis render me unable to work outside of my home.

These physicians are wrong and right in their presumptions about my abilities. In certain ways I am very high functioning and capable of completing tasks found in some workplaces. In other ways APD and hyperacusis make it impossible for me to function in the professional capacity I used to.

I can think and problem solve very well…if the environment is completely silent. Ear plugs, ear muffs, and noise cancelling earbuds do not block out all the sounds in an office environment. Since my professional experience is in insurance and financial services, I can no longer sustain employment there. Sound overwhelms my brain. I cannot tolerate or understand voices as you would find in a meeting or in a cubical environment. I cannot use the phone for over five minutes. I cannot tolerate environments with any music at any volume.

Any sound beyond a single voice that lasts for more than a few minutes can render me confused and unable to focus at best, or provoke a sleep attack at worst. Too much sound makes me struggle to find my words. My speech becomes choppy and inarticulate. My ideas become convoluted and distorted.

Conversations must be one on one and of short duration. I would have to miss work 1-2 days per week for doctor appointments, including ongoing therapy for my APD. I don’t know of any insurance or financial services company that could accommodate those needs and nuances. And then there are my numerous allergies. I’d also be out sick for my myriad and unpredictable allergic reactions, usually a few times a month.

But here’s the part where the doctors are right. I can work. I just need additional training so that I can return to the workforce in another field. I fully expect I will be off of disability and economically self sufficient within a few years. I absolutely can work from my silent and allergen free home as a writer. I am currently getting the education I need so that I can do just that.

But here’s the deal: Just because I will likely be able to return to economic self sufficiency does not mean other people on SSDI are less driven or motivated than me. I’m not a harder worker than other people on SSDI. I don’t have a different sense of “entitlement” than others on SSDI. I’m not in any way a better person than others on on disability. I am more fortunate and privileged than most others on SSDI.

Let’s first examine my situation with the situation of a friend of mine. My friend, “Doug”, is in his 50s. He has a high school level education. He had been a semi truck driver his entire working life. Our incomes were comparable when we became disabled. We both made in the upper $40s annually so our SSDI income is about the same. Doug became partially paralyzed. He uses a wheelchair on bad days, and walking sticks on rare good days for mobility. There is no way he can return to work as a truck driver. He could not pass a Department of Transportation physical. He did not have a spouse when he became disabled.

Despite his indisputable paralysis, he was denied benefits at the time of his initial SSDI application. By the time he was approved on appeal, he had a negative net worth due to medical bills associated with his illness and rehabilitation.  He was near homelessness. He stayed with barely sympathetic family.

Months later, when he got his SSDI back pay, he had to use it for bankruptcy attorney fees and housing. He had lost everything while unable to work and awaiting benefits so he had to use his back pay to start from scratch and get necessities such as rent deposits, furniture, and an old broken down car. He only has Medicare so he has to pay for 20% of his ongoing medical treatment. After those expenses he sometimes does not have enough money for food. In order for him to retrain for a desk type job, he would need reliable transportation to access educational opportunities, assistance getting his wheelchair in and out of his car to attend these opportunities, money for clothes, and a big assurance that age and disability discrimination won’t keep his efforts from paying off.

Contrast that with me. I became disabled at age 38. I have a bachelor’s degree level of education. While I was denied benefits twice, I was finally awarded them by a judge who approves less than 25% of the cases that go before him. The vocational expert at my hearing explained there exists no full time position that could accommodate my disabilities, “No competitive employment,” were the words she used to describe the positions in which I could work.

It is also remarkable that at the time of my hearing I did not have a diagnosis of either Auditory Processing Disorder or hyperacusis. I simply described my auditory experiences with confusion and wonder and had a stack of medical records from equally perplexed doctors outside of audiology who supported my description of how sound affects my functioning.

I was incredibly fortunate to have a spouse paying our mortgage the entire time I was disabled but not yet approved for benefits. While my medical bills did contribute to our filing for bankruptcy like Doug, we were able to keep our home and our two reliable vehicles because we had income.

I signed up for the Ticket to Work program within weeks of becoming approved for Social Security Disability benefits. I was able to drive my reliable car to meet with my Ticket to Work liason. As soon as I got my Social Security Disability back pay, I signed up for online writing and publishing classes. I got a new laptop to write with because my old one was dead. I bought a year of blog hosting. I also finally got access to the audiological treatment I need because the audiologists don’t take insurance for my treatment. They are private pay only at between $90 – $350 per visit. Despite my spouse’s income, I was unable to get audiological treatment before receiving my back pay. We were broke.

My financial privilege allowed me to use my back pay for classes, a computer, and medical treatment that many other disabled people would not have access to. I have a spouse who makes enough money to have kept us afloat when I lost my income due to disability. I also have my spouses’ private insurance policy in addition to Medicare. That keeps my out of pocket expenses for non audiological treatment low. I also had a type and level of education prior to my disability that will allow me to transition to another field. I don’t have to worry about buying food, so I can buy education and hopefully create my own opportunities.

I have financial resources that a small minority of people with disabilities have. That is privilege and that will help me succeed where others cannot.

There is a lot more involved than work ethic in understanding which people with disabilities can achieve economic self sufficiency. Please consider these dynamics before you judge the ability of a disabled person to work. Like most things in life, issues of working while disabled are more complicated than they appear.

And if you’re in health care, how about just not judging your disabled patients? If they are on SSDI and you are employed, you’re already living a better life than they are. Why on earth would you pile onto their challenges?