Spring 2018: "Letters of Hope" University Winner Carly Nelson

Read Carly's letter to her friend Peach about the paradox of support systems and finding hope from those who share struggles of being disabled and fighting bureaucracy.
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Carly Nelson, a senior student of Professor Karen Cunningham at Kent State University in Kent, Ohio, read and responded to the online YES! Magazine article, "Love Letters to the Resistance" by Aura Bogado.

Writing Prompt: Think about what matters most to you about our country’s future. Write a letter to someone important to you, describing that future you imagine and hope for.

 


Dear Peach,

When you first came to live with me, I naively hoped you would no longer have to fight for respect, safety, and even survival.

As a gay, autistic, non-binary person, you weathered some rough teenage years. You also escaped a number of abusive situations and survived years of physical pain and exhaustion, the source of which remains undiagnosed. Knowing how resilient you are, I thought that if I could just get you into a safe home, help you get to doctor’s appointments regularly, and apply for benefits, your life would be entirely turned around.


And yet, there are still innumerable obstacles.

For instance, the Ohio Works First program requires that you hold employment to be eligible for food stamps. Additionally, the doctor was unwilling to sign off on the form to exclude you from the work requirement until you underwent a series of tests. These tests needed to be scheduled several months in advance and would require you to get up very early in the morning, which I know would exhaust you physically and mentally. This was the first of many times your disability would stand in the way of proving that you have a disability. And it was the first of many times that the public assistance system forced us to jump through many fruitless hoops and find a way to make things work on our own.

Advocacy is more than simply stating your needs. It’s defending them in a world that seems to do everything in its power to refute them. People don't think you need support because you were able to escape an abusive situation—never mind you would have died had you not escaped.

You may get approved for social security income at a hearing one to two years from now, but if anyone gives you money in the meantime—in any form other than a loan—they’ll count it as income and cut back the amount they give you if you’re ever approved. It seems that any time you’re able to get your needs met while waiting for the system to catch up, it’s held against you. I think of how many others like you struggle in similar ways, and I can’t help but wonder how much blood is on the hands of the systems that are supposed to keep people alive.

We are both exhausted by the constant onslaught of work it takes to get people to understand and respect what you need to be independent. It becomes easy to feel as though we will have to spend the rest of our lives trying to convince people that you have the right to be on your own.

Amazingly, those who have given us the most hope are not the people in positions of power, but people in similar situations—those who understand that the world can be horrendously difficult. These Good Samaritans have offered to lighten the load, or at least offered solidarity. In the words of our beloved Mr. Rogers, we have learned to "look for the helpers," and we’ve found them among people whose resources are often not much more than our own.

While I wish it didn’t have to be that way, I am inspired by our ability to find what we need amidst all the chaos and difficulty. In line with negotiation theory as described by Roger Fisher and William Ury, when negotiation isn’t possible due to power imbalance, we continue to improve our best alternative to a negotiated agreement with the help of those who are willing to help us. Sometimes our best alternative involves asking for donations, pooling resources with others, or finding creative ways to meet your needs.

Like Aura Bogado said in her YES! Magazine article, “Love Letters to the Resistance,” we “don’t turn from this moment, but instead accept it and its infinite challenges.” We may never escape bureaucracy and other obstacles, from people who won’t let you use AAC or let me speak for you when you’re nonverbal to doctors who tell you “you’ll just have to learn to deal with” your pain when it’s at a level eight on a ten-point scale. Still, we will write our own deliverance and work toward systems that allow you and other multiply marginalized people to flourish. My dream is that the future will follow our example.

Love,

Carly

 

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