Bonfire Tales: Stories of Disability

My name is Tatiana and I have type 1 narcolepsy. I recently moved into an adorable pine-paneled studio in the White Mountains of Arizona.

Moving is exhausting, spiritually and physically

It took me a full day, three naps, and one sleep attack to move in yesterday. Moving is exhausting, spiritually and physically. I’ve had the pleasure of moving 4 different times within the past year. Moving doesn’t get any easier the more I do it. In fact, it has lost some of its luster with each cycle of packing and unpacking.

This time around, I wanted to try to set down some roots with people nearby. I was invited to a community bonfire tonight. As we sat in the October chill and discussed some of our life events, I found myself sharing more about my narcolepsy than I planned to. I was drawn to my newest place because of the cheap rent that included the cost of utilities. I am on disability due to the severity of my symptoms and my income is quite sparse because of this. As it turns out, many of my new neighbors are in similar boats.

I couldn't help but notice trends among these stories

Staring into the coals, I listened to the plethora of complications that come with having disabilities and couldn’t help but notice trends among these people's stories. Whether it was inaccessible workplaces, inadequate access to preventative medical care or diagnosis, or other various problems, I found myself able to relate to many of them. As a moderator for Health Union, I recognized many problems that I’d read about in our own community.

Forced poverty under disability benefits

As a person with a permanent disability that results in my inability to hold a normal job, I am only allowed to make a certain amount of money working part-time each month. If I go about a certain amount, I will lose my disability benefits and my health insurance.

I am not allowed to have more than $2000 in assets. The amount of money I get from the government each month isn’t enough to cover standard rent anywhere in the United States.

These problems are not unique to my situation. All of these factors, and more, lead to forced poverty within the disabled community.

Disabled people throughout the world face many of the same obstacles

All of this is dehumanizing. I’ve lost friends, family, and more because of my circumstances. Some of my closest people have tried to shame me into believing that all of this is my own fault, in one way or another. That I could just get back to normal if I tried hard enough.

As I peered across the flickering flames, I saw pain and hardship etched in the illuminated faces of my fellow disabled humans before me. I realized that my struggle as a person with narcolepsy — unable to stay awake longer than a few minutes at a time without treatment, and unable to work a normal job or pursue a Ph.D. program with treatment — is not special at all. These obstacles that I face are ubiquitous throughout the world for disabled people, in varying degrees.

In this moment of realization, my heart burned brighter than any bonfire could.