Redefining Disability Challenge – Question 32

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty second question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

At what age were you or your loved ones diagnosed?

I was originally diagnosed at age 3.

That is about as much of my personal medical history as I am willing to share in this post. Sure, I have shared more information in prior posts, and could easily go into detail here as well. I am fairly open about my disability and am willing to explain what some consider personal information in an effort to help the nondisabled understand what it is like to live with a progressive neuromuscular disease.

I am an adult, and capable of making this decision myself. I decide what information I share with media during interviews. As a former Ms. Wheelchair New York and in my current occupation, I routinely speak to reporters. I know how much of my life story I am willing to share and where I am willing to share it.

One of the reasons I participate in this blogging challenge is to tell my disability experience in my own words, as I want to. I have control over what you read when I answer these challenge questions. I make the choices related to language and the tone of my posts.

Telling your story can be wonderful. I told my story to a local television station in 2001, and it led me to the man who would be my boyfriend for the next four years (it also made for a great “So, how did you two meet?” story). Sometimes when I am out in public after an article or interview has aired, people recognize me and tell me how I influenced their views related to disability. It is an honor to know I am reaching an audience and teaching them something new.

Telling your story can also cause regret. Sometimes your requests for disability-positive language are not honored. Quotes may not be accurate. Once a reporter wrote that I lived alone and then gave the name of my apartment complex. As a single woman with a disability, that is not information I would have willingly shared in the largest area newspaper.

I am a member of a Facebook group for bloggers with disabilities. The other group members are creative and articulate. Each day, I read blogs which cause me to think critically about my own perceptions of disability and my identity. Last week I read an article by Carly Findlay, What to Consider when the Media Asks You for Your Story. In the article, Carly lists a series of questions to consider when you are approached by the media and asked to tell your story. If you are considering a request from the media, it is a good idea to do research so you know what to expect. I urge you to check out Carly’s list of questions. Even if you don’t use them, they are useful to help you formulate your own clear idea of what you hope to gain by sharing your story publicly.

Have you shared your story? How was your experience?

I’m curious and would love to hear your feedback in the comments below!

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10 thoughts on “Redefining Disability Challenge – Question 32

  1. I am always skeptical about someone giving too much information in such a digital world we now live in. Yes, someone could get the info on you, if they really wanted to. I’m wondering who made up this disability challenge in the first place and did they think about future consequences? Interesting thought.

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    • To answer the question, my goal was to use these challenge questions as a resource for others who are interested in hearing first hand accounts of peoples’ experiences with disability. Participants can decide which ones they want to answer or how much to share, so any consequences are relative to the individual.

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  2. As you know I am very careful about releasing personal information on my blog because I want to walk safely and I feel by restraining the information I give out, this is one of the best ways to help that intention. I think everyone should think carefully about the information they add to digital media. I guess it comes back to whether in a face to face conversation you would offer specific information to a stranger – if you would not do that in a close setting then you shouldn’t do it when you have no idea of the strangers you are reaching on the internet.

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    • I understand. There was quite a bit of information out on the internet about me before I started blogging – so I can’t do too much about that. But I do understand the safety concerns you mention.

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