Redefining Disability Challenge – Question 42

This week, I resume my weekly posting in this blogging challenge. The challenge, created by blogger Rose B. Fischer, consists of fifty-two questions. To read my prior posts in this challenge, visit the Redefining Disability Challenge page on my blog. This is my response to the forty-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:

Why do you think media representation for people with disabilities is important?

I think accurate media representation of people of all abilities is important. Disability does not exist in a binary of “nondisabled” and “disabled” extremes. I view it as a continuum. People can find themselves at different points of the continuum throughout their lives. If you live long enough, you will travel on the continuum. Shouldn’t we see this continuum reflected in the media as a fact of life? To me, it makes sense this should be the case.

Movies, television shows, podcasts, blogs, and novels all have the power to tell compelling stories. Humans are drawn to stories and relate to well-told narratives. One way to lessen stigmas surrounding disability is to use media to tell accurate and honest disability stories.

When you go to the movies, do you see yourself on the screen? I rarely see a character like me. When you watch television, do you see characters who live a life like yours? I don’t watch much television, but when I do I don’t see characters living like me. When you search for a book, is it easy to find novels or stories which feature characters you relate to? I can’t think of a fictional character living a life like mine. I may relate to them, but not because of disability.

How would you feel if the only time you saw a character who looked like you was when the character was a villain? What if the character was only there to be the butt of everyone’s jokes or an object of pity?

Think about the last time you saw a character with a disability in a television show or movie. The chances are, the actor playing that role was not disabled. However, if you are an actor and you want to win an Academy Award, your chances might improve if you play a character with a disability in a movie. Dustin Hoffman, Eddie Redmayne, Daniel Day Lewis, Tom Hanks (twice), Jamie Foxx, and Geoffrey Rush are just some examples of men who won after their portrayal of someone sick or disabled.

I share my stories on my blog because they are a way to help others who have not been exposed to disability. But my stories are just my stories. I would never expect my disability experiences to be exactly the same as another wheelchair user, or someone who is blind, or autistic. Although we may share similarities in our narratives, each will have a unique story to share. It is important that we all be permitted to tell our stories in our own voices, rather than having someone else (usually nondisabled) tell it for us.

Unfortunately, media outlets don’t always let people with disabilities tell their own stories. And when they do include disability stories, they do not always use empowering language or portray disability in a positive light. The “wheelchair-bound” headline always makes me scream each time I see it in print. Don’t even get me started on “special needs.” My needs aren’t special. They are basic human needs. As the book says, everyone poops. (Click the link to watch an animated version of the story.)

As a child and teenager, I rarely saw depictions of disability in the media. The few local news stories to feature disability often included me as an example of someone who “didn’t let her disability define her.” Sometimes the stories included a cute photo of me sporting uneven bangs and a gap-toothed smile, with my leg braces in view. Occasionally I was featured in fundraising photo-ops, television commercials and telethons for the Muscular Dystrophy Association.**

Today, I view these types of stories as a type of inspiration porn. If you aren’t familiar with that word, I encourage you to watch the late Stella Young’s brilliant TED Talk. Oh, go watch her even if you’ve seen it before, because she is just that good and I still mourn the fact that I didn’t get to meet her on my trip to Australia last year.

Inspiration porn – images or stories objectifying disabled people by attempting to inspire and motivate those of you not fortunate enough to be disabled like me – is a form of media representation which needs to stop. I know you have seen those stories because they are regularly in my social media feeds and my local television news.

The photo of the runner wearing prosthetic limbs with the caption, “What’s your excuse?” The unspoken message is that if she can do it – a disabled person who must have it worse than you – your life can’t be all that bad. After all, someone else out there has it worse than you and is still managing so quitcherbitchin.

The senior class president makes a “special proposal” and invites the disabled girl to the prom. Of course, the local television channel is there to capture it all. At least my local station gave the girl in question a chance to talk in this clip. I’m sure the young man is very nice. And I am happy this story actually gave the young woman a chance to speak on camera. But I have to wonder how she felt as the object of the story. Did she think the only way she deserved to be asked to prom was to have the local news media make a hero out of the boy who asked her? How will she feel the next time someone asks her out? Will she suspect it is out of pity instead of someone having a genuine desire to spend time with her? I am not alleging this young woman was asked out of pity, but imagine how you would feel as the object of this story.

I went to the prom, two proms in fact. Both times, I asked my dates to go with me. They agreed with little fanfare. The local newspaper did not make them out as heroes for accompanying me to a dance, thank goodness. Both times, we were just friends who got dressed up for a night and had fun with our other friends. What is so inspirational about that?

The most insidious inspiration porn includes videos or photos of disabled people taken and posted without their consent. Maybe you remember the incident last year when a fast food employee in Kentucky assisted a disabled customer who was unable to independently eat her meal? Another customer captured the moment and shared the video which soon went viral. I wrote about my reaction to one such story in this post. A friend just shared a story which aired on ABC news of ‘a “hero” employee in a Georgia restaurant who helped a handless man eat.’ That’s their copy – I didn’t write that.

When these stories hit the mainstream media, the stories never include an interview with the disabled customer, and rarely disparage the lack of appropriate social supports which might have helped the subject eat in a dignified manner rather than rely on kindness from strangers to meet a basic human need. If society viewed disability rights as civil rights (radical idea, I know), the media would not have difficulty coming up with disability stories. Without much effort, I can think of several. My friend P. who is unable to legally marry his partner A. because he would no longer be eligible for the benefits which pay for his Personal Assistants. Or my friend C. who endured years of domestic partner abuse because she was unable to locate affordable accessible housing and escape her abuser. Or my friend N. who had to live for nine months with the man who was sexually abusing him because nobody believed his allegations. N. has a cognitive disability and people who should have been advocating for him thought he was making up stories.

What can you do to help the media tell better disability stories? Become better media consumers. Read blogs written by disabled people. Watch films made by and featuring actual disabled actors and actresses. Speak out against inspiration porn and for the love of all that is good – STOP SHARING INSPIRATION PORN ON SOCIAL MEDIA!!! Just because we can share or post something, does that mean we should?

If you would like ideas on blogs to read or sites to visit, here are some to start you in your discovery. This list is by no means inclusive, and you should feel free to add your favorites in the comments.

Disability Visibility Project

How Did We Get Into This Mess

Dominick Evans

Tune into Radio Carly

Disability Thinking

Of Battered Aspect

Bad Cripple

Smart Ass Cripple

Words I Wheel By

Two Thirds of the Planet

That Crazy Crippled Chick

Crip Novella

And, just in case you weren’t clear on my position – I guarantee I will NOT be kind to the stranger who takes a video of me in public without my consent and shares it thinking it might inspire others. I am counting on all of you to inform me if you ever see this. Thank you in advance.

 

**I do not have any negative feelings towards my parents for allowing me to be included in these stories. My parents always asked me if I wanted to be involved, and never made me participate in any media against my will. Their rationale for my involvement as a poster child/goodwill ambassador for the organization was simple. They viewed it as a means to give back to an organization that supported us with financial assistance for medical treatment, durable medical equipment and summer camp. I learned valuable life lessons from my early media opportunities.

 

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Redefining Disability Challenge – Question 34

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-fourth 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:

How has public perception of disability changed in your lifetime?

This is a question I struggled to answer. It should be an easy answer. I ought to be able to say public perception of disability has changed in a positive manner in the course of forty-two years. Most of the time, in my world, I can say that. The physical environment we live in has become more accessible. More people with disabilities are pursuing higher education. When I travel, rarely am I the only person using a wheelchair in public spaces. Every television set I’ve owned for the past fifteen years has closed captioning options. More books and magazines are available in alternative formats.

But while there has been some very positive movement towards community integration, I can’t say there is a positive perception of disability in our society.

I can’t say it because I continue to hear strangers tell me and others, “I’d rather die than have to rely on someone else to help me with personal care.”

I can’t say it because I regularly receive invitations to events but when I call to ask about accessibility, most times the event planners have not considered anyone other than a nondisabled, hearing and sighted person might attend their event.

I can’t say it because each week I read a blog post written by someone with a disability explaining (once again) why it is rude to assume people with disabilities need help and to just provide said “help” without asking first.

I can’t say it because only 35% of Americans with any type of disability are employed either full time or part time, as opposed to 76% of Americans without a disability.

I can’t say it because I am still told, “It’s nice to see someone like you out.” As opposed to where – in an institution where people who use wheelchairs should obviously be???

Does this mean everyone has a negative perception of disability? Of course not. In fact, with one out of five people self-reporting disability, chances are good you know someone (other than me) who has a disability of some sort. You probably are related to, and may even like, some of these people!

But when was the last time you saw a media story about a person with a disability which did NOT feature their disability? In my personal life, I can count on one hand the number of media interviews I have completed in my lifetime which have not involved my disability. And a quick Google search will tell you I have never shied away from media.

Part of the reason for me completing this blogging challenge was to provide my own disability story as I want to tell it as an alternative to the disability story often portrayed in mainstream media. There are many people with disabilities who are using blogs, YouTube and other social media to tell their own stories. I shared some of the ones I regularly read in this post.

I hope as more people with disabilities share their stories, the public perception of disability will start to change. Social supports and disability policy will hopefully reflect changing realities for people with disabilities and allow them real equality rather than regard them as second class citizens without autonomy. When that happens, perhaps disability will be viewed as part of the continuum of life, and not something which must be avoided at all costs.

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!

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!