Watercolor illustration of a young woman.

How to Advocate for Yourself as a Young Adult With a Disability

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How to Advocate for Yourself as a Young Adult With a Disability

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Regrets. We all have them. Things we wished we hadn’t done. Or things we wished we had. Today I wanted to talk about an experience I had in college and what I wish I would have done differently.

Our church denomination makes bulletins that follow the lectionary for the entire church. However, not all churches in our denomination use these bulletins. The church I grew up in does not. They make their own. The denominational newsletters more often than not use photographs of stock images, etc. to convey the message of a particular Sunday. Sometimes pictures used would be of a church in the area or some such.

While on summer break from college one year, I attended my parents’ church (the church I grew up in). A member approached me after services one Sunday with an idea. He had been picked by our denomination to produce a concept for a new set of newsletter covers to be distributed to churches denomination-wide. The scripture used would be Luke 14:12-14:

“Then Jesus said to the man who had invited Him, “When you host a dinner or a banquet, do not invite your friends or brothers or relatives or rich neighbors. Otherwise, they may invite you in return, and you will be repaid. But when you host a banquet, invite the poor, the crippled, the lame, and the blind, and you will be blessed. Since they cannot repay you, you will be repaid at the resurrection of the righteous.”

Now of course we don’t use words like “lame” and “outcast” to describe people with disabilities anymore. Those words are terribly outdated and offensive. Thankfully other translations of the Bible use more appropriate wording that doesn’t change the meaning of the original passage.

But semantics isn’t the point of this blog. I want to focus on my conversation with this producer.

After he approached me to ask if I wanted to be a part of the photo shoot, he described his idea. I would
sit in my wheelchair in the front row of the church next to all the other disabled people from our church. Then we’d hold hymnals and pretend it was a regular church service as photos were being taken.

As a young adult, I instantly had a few misgivings about this concept, but didn’t immediately decline to
participate. The first of which was that all the disabled people in our church didn’t sit together in a group. Not that we all didn’t like each other, we just chose to sit with our families.

The second misgiving was that at the time, I didn’t use my wheelchair during church. Just crutches. I suggested I use only my crutches for the photo shoot. After I mentioned this concern and the follow-up suggestion, the producer looked at me a bit smugly and said, “Just pretend you are acting! You are playing a role!”

Um, what?

Now 37-year-old me would have laid down a litany before him of why that statement was offensive and too rude to even say aloud. But 21-year-old me just stood there in disbelief, wondering how anyone could think that suggestion was OK. And in a move that has haunted me every day since, I decided to go through with the photo shoot.

After it was over, I ran into the bathroom and cried, feeling so ashamed that I hadn’t spoken up and told him I wasn’t going to participate because it was an offensive idea. The idea that I could pretend to be disabled.

My life is not pretend. Every day I wake up in a disabled body and go about my day. It is not an act. And years later, I wish I had stood up for myself and told the producer that what he was doing was damaging and exploitative.

So what should you do when you are young and a situation like this happens? I have a few options for you. Things I wish I would have said:

1. “No.” Just simply say no. Don’t feel pressured to give a further explanation. You don’t owe anyone an explanation.

If you’d like to give an explanation, say:

2. “I don’t feel comfortable pretending that way.”

3. “Doing this would make me feel exploited.”

Being asked to do something you don’t want to do or feel uncomfortable doing can be awkward. But advocating for yourself in these situations can help others to understand your point of view.

Follow this journey on Be Anxious About Nothing.

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