Living with FA often means being overwhelmed by paperwork

I spent most of last week providing the state with documentation of two things I already live with every day: my disability and my need for assistance. I am disabled because I have Friedreich’s ataxia (FA). I was doing it for a state program that offers loans with amazing terms for a kitchen renovation, and I’m genuinely grateful that a program like this exists.

But gratitude and frustration can live in the same body. Even when the help is real, the process of proving, again and again, that I qualify for it is exhausting.

Every time I apply for services, I need fresh verification that I am disabled, as if my disability expires unless someone in an office stamps it current. I understand why programs need rules and records. Public money has to be accounted for.

Still, there is something tiring about turning my daily reality into evidence over and over again. It means calling doctors, finding old records, describing limitations in the most clinical language possible, and hoping the person reading it believes me.

It means shrinking a whole life into checked boxes, diagnoses, and proof of need.

Recommended Reading

April 23, 2026 Columns by Kendall Harvey

The two types of people who ask questions about my disability

My experience getting needed benefits

I think the first thing I ever received from the government was a handicapped parking placard about 25 years ago. By then, I had been using a rollator for about five years and had been diagnosed with FA for about 19 years.

The placard would’ve been helpful long before I applied for it, but by the time I finally did, I really needed it. My primary care physician filled out the form in a way the state wouldn’t accept, so it bounced back to me.

I sent it to my neurologist, who had a better sense of what the state wanted. Even then, something as basic as closer parking and wider spacing between parking spots still required extra waiting due to an administrative misunderstanding.

Later, when I could no longer keep working, applying for Social Security Disability Insurance (SSDI) brought another kind of need for proof. I had worked as long as I could, even part time, before I finally stopped.

I don’t remember every detail of the application, but I remember having to go without income for six months before receiving benefits. I also remember speaking with an agent who accused me of being drunk because of my slurred speech due to FA.

That memory still hurts. You’d think people handling disability claims would be trained to understand that some disabilities affect speech. Of course, my doctor had to affirm what he’d already done countless times and what I was living: that I had a permanent disability.

What wears me down is not only the administrative work, but also the feeling of being questioned by default. I already organize my life around fatigue, access, appointments, and workarounds that other people never have to think about.

Then, when I ask for help that’s supposed to make life more manageable, I have to prove again that I really need it. I do it because the support matters. I do it because the kitchen matters. But I wish the process recognized that disabled people are not just applicants in a file. We are people who have already paid, in time and energy, before the paperwork even begins.

There has to be a better way. If, like me, you are already on SSDI, then you’ve already proven to the federal government that you’re disabled. Couldn’t that be enough to establish eligibility for other benefits?

Could there be a government ID or some streamlined verification that colleges, agencies, and programs would recognize? Maybe there’s a future in which we wouldn’t have to ask our doctors to fill out yet another form every time we need help.

The paperwork may need to exist. But it shouldn’t make disabled people start from scratch every single time.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.