Future or Present?

Today, December 3, is International Day of Persons with Disabilities (IDPWD), a day designated by the United Nations to increase public awareness, understanding and acceptance of people with disabilities. The theme for this year is Achieving 17 Goals for the Future We Want.”  The theme relates to the 17 Sustainable Development Goals which were recently adopted by the United Nations. Of particular note, this year marks the 10th anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), an international treaty not yet ratified by my country but embraced by many other countries around the world.

While I think it is important to consider how we can work to incorporate people of all abilities into our plans for the future, I am too mired in what it means to live as a disabled person in the present to get excited over this year’s IDPWD theme. Personally, I spend too much time ensuring my basic needs are met here and now to think about what will happen next week, next month, next year.

Of course, I do worry about the future. I am concerned about what will happen if Medicaid, the federal government program which funds long term support services such as home care for most people with disabilities, is turned into a block grant program. I am concerned about how people with pre-existing conditions will access healthcare if the new administration is successful at it’s pledge to dismantle the Affordable Care Act. I hear stories like this NPR story about a 7 year wait to access services in Kansas, and I shiver, knowing I would be dead if I lost my services and had to wait 7 years for them to be reinstated.

But even though I worry about the future, I recognize the changes made in my lifetime which afford me access to the community in which I live. I was lucky enough to have been born in the United States at a time when education laws requiring free and appropriate education for all children were changing. As a result, I was “mainstreamed” and completed my education in the public community school alongside my nondisabled peers. I started college a year after the Americans With Disabilities Act, a crucial piece of civil rights legislation, was signed. I had access to paratransit transportation which allowed me to complete required internships and student teaching experiences. Throughout my professional life, I have had the right to request and receive reasonable accommodations which allow me to maintain employment. All of the sidewalks in my town have curb cuts, giving me freedom to explore and access my community without fear of not being able to cross the street.

Does discrimination still happen? Of course. I know there are times when I walk into a room of strangers and people notice the shiny red wheelchair attached to my butt, making assumptions about me based on that first visual impression of the wheelchair rather than me as an individual. At least once a month, someone tells me they would rather die than live as a disabled person, dependent on someone else to complete everyday personal tasks.

Are there still barriers to full participation? Of course. Yesterday I had to go to a local shopping mall and I was not able to leave when I wanted to because some idiot parked illegally in the access aisle next to my van, preventing me from deploying my van ramp and entering my vehicle. Lucky me, they were still parked there when the police arrived to issue a ticket. I hope the driver appreciates my holiday gift which comes with a $125 fine. ‘Tis the season for giving, after all.

Even though there are laws requiring places of public accommodation to meet accessibility standards, does that mean I can go anywhere I want? No, as I discovered last night when I stopped at a local business to pick up company gifts for my employer’s holiday party only to be greeted by steps. Granted, the staff were nice enough to bring the items out to me, but they won’t be receiving any more business from me or the company I represent. Money talks, and I refuse to give any of it to businesses which are not accessible to me.

Things are changing for people with disabilities, no doubt. Social media and technology make it easier for people with disabilities to share their own stories, in their own voices. I actually started today by helping to share tweets from Australian advocates when I woke at 5:15 AM my time and found the #criparmy and #pissonpity hashtags in several IDPWD posts. I debated writing my own post in recognition of IDPWD and ultimately decided I had to practice what I preach and use my own blog to signal boost the day.

I hope my regular readers will take some time this weekend to search the #IDPWD hashtag and read what disabled writers are sharing. There is also a Disability Blogger Linkup over at my friend Andrew’s blog, Disability Thinking. Listen to my friend Emily’s podcast, The Accessible Stall where she and Kyle tackle issues important to many in the disability community.

Why should you care about the issues we raise? Why do our advocacy efforts matter to you? Because everyone will either be a temporary or permanent member of the disability community at some point in life. And shouldn’t we all be concerned with basic human rights for everyone, regardless of ability?

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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.

 

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!