Hey, Jamie Lynn, get over yourself: Who tells disability experiences?

I’m. So. Sick. Of non-disabled people centering their experiences around disability. And this isn’t unique to me. All disabled people are tired of hearing how disability impacts non-disabled people. Ug!

Recently, Jamie Lynn Spears, sister to Britney Spears, said in an interview that she doesn’t understand why she and her sister have grown apart. In her new book and in interviews, she tears up and shares how difficult it has been dealing with Britney and her mental illness. Girl, please.

Hey, Jamie Lynn, get over yourself.

Britney may or may not have a diagnosed mental illness. No one really knows. Regardless, she was held hostage, a prisoner for more than a decade. Expected to turn a profit but have zero control over her life.

Conservatorships are common among disabled people. We are deemed incapable of making decisions for ourselves. But we are people, grown-ups, and should be able to make choices for ourselves, whether good or bad.

When non-disabled people make poor choices, no one forces them into a conservatorship. Many a celebrity has delt with addiction, financial woes, even tangled with law enforcement. Ahem, Mel Gibson, anyone? And yet, these people did not have their rights removed. They did not lose the ability to make choices for themselves, even if the choices continued to be bad.

But the minute we are labeled disabled, the ableism oozes out. Non-disabled people just can’t help themselves.

In my 18 years of being blind, and my 36 years being T1 diabetic, I’ve heard everything from how I’m a burden, to how no one can relate to me to I’m a financial dreg on society. All centered around how non-disabled people feel about me, never based on my actual experience as a blind person.

I was never put under a conservatorship, but 18 years ago when I became deathly sick and started becoming disabled, I trusted people in my life to handle my finances. It was a mistake. Eighteen years later, I’m still dealing with this financial fall-out. Yet, I’m the burden.

Years ago, during a fight with someone close to me, they clapped back with, “Well, I’m not lucky to sit around, doing nothing, getting free money from the government.” Not only is this incredibly offensive, but it’s wildly ignorant and utterly misinformed.

Once, I asked for help setting the washing machine since no one thought to label it. I was told, “You don’t know how difficult it is living with a disabled person.”

I’ve witnessed people in my life praise all the hard-work they have done taking care of a diabetic kid. Never asking me to share what actually living with diabetes is like.

I am still pushing against these ableist ideas and comments. I continue to hear how disability effects non-disabled people, as if they have any real say in it. It’s not my job to make you feel better about disability. It’s my job to live my life, making what choices I want, just like anyone else.

How about read an article? Pick up a book. Uh, novel idea, talk with a disabled person. Confront ableism and actually learn something.

I don’t blame Britney Spears for establishing boundaries and putting distance between herself and her family; the people who stole her autonomy for 13 years. According to Britney, she had to ask permission to drive a car. She could not make personal or professional decisions. She was even told she could not have another child, and time with her fiancé was restricted. Not to mention she continue to make a profit, that many besides Britney were benefiting from. This is all appalling, and I don’t understand why anyone thinks it was ever okay for Britney to have her rights removed.

Disabilities and health conditions have challenges. As a blind person with type one diabetes and chronic pain/fatigue syndrome, believe me, I can write a dissertation on the challenges I confront. But the biggest challenge is dealing with ableism.

Yes, living with a disability is hard… Because non-disabled people make it hard. We are not your inspiration. We are not to be pitied, the catalyst making you more secure about your life.We are not your special project; we are not your charitable deed.

Stop framing disability around your non-disabled experience. We do not need your ableist interference. The real, real, you don’t fit into the equation. Your thoughts and opinions don’t matter. If you’re not disabled, you have no experience of it.

If and when you become disabled, because 25% of people are disabled, and this number grows as anyone at any time can become disabled, welcome, we look forward to your thoughts. Until then, sit down and shut-up.

By Imperfection

Bridgit Kuenning-Pollpeter is a mom and writer from Omaha, Nebraska but recently relocated to Urbandale, IA. When she’s not chasing children, picking up messes or reorganizing the house, she enjoys yoga or reading to relax. In her spare time (A.K.A. her dreams) she’s a Broadway star. Kuenning-Pollpeter is a freelance marketer during the day, a creative writer at night. Her work has appeared in the Brevity blog, The Omaha World Herald, 13th Floor, Misbehaving Nebraskans, Hippocampus, Emerging Nebraska Writers and Random Sample Review. She has her BFA and MFA in writing from the University of Nebraska Omaha. Her essay “The Body” was a McKenna Fellowship finalist, and her essay “Imperfection” was a 2020 Best of the Net Nominee. She is blind and writes frequently about disability. She’s working on a memoir about the disabled feminine experience. With the kids though, expect it in stores in about a decade.

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