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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Redefining Disability Challenge – Question 25

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty fifth 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:

What things are most important to you when it comes to media representation for people with disabilities or your disability in particular?

Media representation of disability plays a role in how the public perceives disability and life with disability. Media portrayals of disability can help promote or dispel stereotypes. Commercials, movies, television shows, radio programs and podcasts can educate, but not unless they reach a wide audience. Rather than tackling this question head on, I’d rather talk about disability stories I have encountered this past week.

I tried to pay closer attention to the media over the past week, knowing I would be writing this post. I follow several blogs and social media sites which promote disability related stories, so I recognize I may read and hear about topics which the nondisabled do not.

For instance, yesterday I read about the “disturbing video” released by the American Civil Liberties Union (ACLU) showing an 8 year old boy with attention deficit hyperactivity disorder (ADHD) being handcuffed by his school’s resource officer. I have not watched the video, but the New York Times reports the video shows the boy crying as the resource officer places him in handcuffs and tells the boy, “You don’t get to swing at me like that.” The ACLU is filing a lawsuit against The Kenton County (Kentucky) Sherriff and the deputy sheriff involved in the incident. The lawsuit also describes another instance where the officer handcuffed a 9 year old girl twice behind her back by her biceps. Both children were punished for behavior related to their disabilities. Thankfully, neither child was arrested. Nor did they receive criminal charges.

Monday I read an article about the Ms. Wheelchair America Pageant,  held last week in Des Moines, Iowa. Full disclosure – I am a past Ms. Wheelchair titleholder and served various roles on the Ms. Wheelchair America Board of Directors between 2003 – 2012. So, I follow the media for stories about the organization. This article described the pageant in a very positive manner without objectifying the participants. I hear your skepticism -an article about a pageant which does not objectify the titleholders? Yes. Go read it for yourself, and then congratulate Dr. Alette Coble-Temple, the new Ms. Wheelchair America 2016, who’s advocacy platform is parental rights include disabilty equality.

Speaking of parental rights, last week an online friend shared an article from May about parents with disabilities fighting to keep their children. The article, which appeared in Al Jazeera America, described the legal struggles of women with disabilities trying to maintain custody of their daughters. I have several friends with disabilities who are parents and who have encountered negative attitudes, doubts and legal challenges. I read an article in The Daily Beast which stated here in the United States, disability may be used against a parent in a custody case in 37 states.

Monday morning I heard a story on NPR’s Morning Edition about the 2015 Special Olympics World Games. For the first time, some of the events were televised live on ESPN. Did you know a world record was set at these games? Jackie Barrett, a power lifter from Canada, known to his fans as The Moose, set a new world record in power lifting – in all of power lifting, not only lifting performed by athletes with disabilities.

Last week I also watched the first episode of a new BBC3 television program called Wanted: A Very Personal Assistant. The show matches young British job seekers with employers who are searching for Personal Assistants to help with their personal care. Yes, it is a reality show and I know some of these matches may have been set up for good viewing. The potential Personal Assistants don’t know they are applying for a job involving personal care for people with disabilities, which causes some interesting interactions. But the show does a realistic job of illustrating the difficulty finding a “carer” who is capable, reliable and a good fit for your personality and lifestyle. It also demonstrates some of the mistakes Consumers who are new to self-directed care can make, such as hiring a Personal Assistant because you think he or she will help you meet dates. If you are in the United Kingdom, you can watch the show on the BBC iPlayer. If you are not, you can watch the first episode and second episodes on YouTube here and here.

I have social media connections with other people with disabilities who have begun their own media projects to help promote positive views of disability. One of the reasons I am completing this blogging challenge is to tell my own personal story related to disability.

The media and our culture often portray disability as negative, something to be cured or avoided, a cause of diminished quality of life. But that is not the life I know.

I am proud of my difference. It makes me unique. It affords me opportunities I might not otherwise be offered. My disability has taught me optimism, patience, empathy and grace. Because I am physically unable to perform basic tasks without assistance, I am able to offer employment to those eager to work. My wheelchair connects me to others who navigate the world with what some nondisabled might consider an alternative point of view.

Life has challenges for everyone. My disability is visible and often perceived by the nondisabled as the main obstacle I face. However, the real obstacle is the negative attitude held by those incapable of recognizing my capabilities and value. The barrier is not the flight of steps at the front of a building but the architect who failed to consider my needs when designing a public space. The limitations to my economic independence are the antiquated rules which require me to live without resources in order to obtain necessary home care.

I appreciate realistic media portrayals of daily life for people with disabilities. We are a diverse group, and each of us has a unique story to tell. I am most impressed when people (with or without disabilities) tell their own stories, in their own words, in a way natural and comfortable to them.

To that end, I encourage you to read other blogs written by people with disabilities or related to disability issues. If you don’t know where to start, try some of these. This list is not exhaustive by any means, but should be considered a starting point.

Words I Wheel By

Disability Thinking

Curb Free with Cory Lee

Smart Ass Cripple

Carly Findlay

Disability Visibility Project

Comfortable in My Thick Skin

Health on Wheels: The Journey to a Better Me

Dominick Evans

A Little Moxie

Let’s Queer Things Up

KDub155

How Did We Get Into This Mess? On Language and Power

 

Do you revommend a blog I accidentally left off this list? Please share it in the comments below!