Whose Experience Is This, Anyway?

Hello, readers,

Lately, it seems like every time I think about writing a post for this blog–or any of my own stuff, for that matter–work piles up before I can do it. It’s kind of like those snow drifts that blew in a couple of weeks ago. But I’m off today and back to start another month, so let’s get going.

You’ll recall that last time, we talked a little bit about the fact that there are a lot of narratives out there about the experiences of persons with disabilities’ caregivers and loved ones. I don’t discount those for a second. They are valuable, and they need to be heard. I even own a book or two that chronicles some of these experiences. Yet I continue to ask myself: are we hearing enough from PWDs about their own experiences?

I would say no, for a variety of reasons. The first, of course, is that a lot of PWDs are told not to express themselves or that their stories can’t be heard because they can’t talk or write. In this age of ever-advancing technology, that’s an excuse and I’m tired of hearing it. Not every PWD has to write a memoir, but even if they tell you only one or two things, they are sharing lives and experiences and thoughts with you. Respect that.

Other reasons, I think, are a little more complicated. Some PWDs don’t know how to share their experiences, or they don’t feel worthy to do so, or they think no one wants to know about them. This last one is something I struggle with, mostly because I write for a living. One of my old professors once said good writing is life with all the boring parts removed–actually, I think he got that quote from another writer. I’m not yet past the idea that for general audiences, my life would have a lot of boring parts.

But then again, aren’t the boring parts where we learn the most about ourselves and other people? For example, when we see a boy with PANDAS (a medical condition that causes strep antibodies to attack the brain, resulting in OCD and Tourette’s symptoms) struggle to deal with compulsions, doesn’t that tell us something about living with a misunderstood condition? When we hear about a girl being abused in a group home, yet not believed because she is supposedly manipulative, shouldn’t that show us there are flaws in how we think and how we treat our fellow people? When we “hear” the thoughts of a man with Down Syndrome, even if they’re about things we think are too simple, shouldn’t that give us a different view of the world?

So, what would it look like for PWDs to tell us about their own experiences? I can only speak directly to mine, but I think there are certain things we definitely need to hear more about, such as:

-What it’s like to triumph in some ways, yet struggle in others, and have people think that they should be reversed (i.e., as happened in my case, who cares about triumphing in the classroom if you can’t tie shoes)?

-What it’s like to be treated as a hero because you have a disability, not based on merit

-The dreams, hopes, and inner thoughts of PWDs. This is the biggie and why we need more stories.

-How faith and other virtues play roles in PWDs’ lives. For example, how does it affect you to be taught that your disability, the hardest circumstance you may ever face, is God’s will? Do you ever wonder if God has a special plan for everybody, but not you? I know I do.

Of course, for these stories to be told, we need ways to get them out there, and we need to accept new ways. I personally enjoy writing, but not every PWD is a writer. Some can draw beautiful, expressive pictures. Others can use assistive speaking devices. Others use sign language, music, or drama. There’s a whole world of mediums out there, and we need to make sure PWDs have access to them.

This month, we celebrate Black History Month. Just like blacks, or gays, or Asians, or Latinos, PWDs have a history, a past, a present, and a future. Let’s commit to learning about it through fiction, nonfiction, and all kinds of stories. Once we have the knowledge, let’s be willing to share it–even, yes, “the boring parts.” Because the boring parts are really the crucial pieces that make up a life and make it unique.



  1. Thanks for this post! A friend of mine recently posted something about the trans community speaking for itself and not wanting the cis-gender community to speak for or portray them in the media. My first reaction was honestly, “why not? able-bodied people portray disabled people all the time.” Then I came to my senses and got mad at myself and thought, “that’s a problem, too!” I’ve had enough of the tropes of overcoming and the super crip, and it’s not going to change unless we control our own narrative.

    Speaking of the “boring parts”… this is why I am participating in #365dayswithdisability on Instagram/Twitter. The lives of PWD aren’t all sad and lonely, or triumphant and majestic. We’ve got all the in-betweens, too. This movement is trying to chronicle that. In case people out there are interested: http://www.twothirdsoftheplanet.com/365-days-with-disability-365dayswithdisability/

    1. Absolutely–and I think it’s really cool that you’re doing that. Everyone has their own stories, and we need to empathize with each other as much as possible. For example, it’s not cool for me, as a PWD, to say, “Because you do not have a disability, I automatically disrespect you and consider you unable to understand me.” However, when the only representation of a certain group of people comes from “outsiders,” then we have a serious problem. And yes, it continues to mystify me that it is okay for temporarily able-bodied people to portray, speak for, and hijack the experiences of people with disabilities, when it is not okay for many other groups.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s