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 Takes a Sick Day

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. But today I have nothing to share.

For the past five days, I have been home sick with a bad cold which morphed into a sinus and ear infection. I have spent the days being miserable, sitting wrapped in blankets, trying to sleep (which is REALLY difficult when you have congestion and rely on a BiPap).

I am a terrible patient when I am sick. But I took advice from other advocates and did what I had to do to feel better. I’m working on my self-care routines this year and never expected I’d have a reason to practice right away.

The next question in the challenge deals with disability and the media, and requires more attention and energy than I have had this past week. So, I will publish my response next Wednesday.

I am feeling better and might actually leave my house today!

 

Redefining Disability Challenge – Question 41

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

Free post day! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

I hate winter weather. I despise being cold. It causes physical pain when my feet get cold, and they are almost always cold from November to May each year. I dislike having to drive in snow with other drivers, most of whom never seem to remember to be cautious. I can’t move my arms if I have to wear bulky sweaters and jackets. Every movement requires more energy and takes more time.

My friends and family know I hate winter. I do my best not to complain. However, it is a safe bet I will put on a bright face in public yet privately curse the cold in my head for months on end. I spend far too much time and energy being miserable about something I cannot control – a behavior I routinely advise others to avoid.

Why do I stay in upstate New York where I am miserable due to weather for six months of the year? Wouldn’t it just make sense to move to a warmer climate?

I stay in New York for many reasons. My elderly parents live in New York, and I like being able to get to them within a couple of hours if needed. Most of my other family members live in New York, and they are part of the support network I rely on to live independently. But the main reason I continue to live in New York is because my disability requires me to use personal assistance to be independent, and New York has one of the best consumer directed personal assistance (CDPA) programs in the United States.

As I have mentioned in prior posts (you can find three of them here, here and here), I rely on the Personal Assistants I employ through CDPA to perform daily tasks most nondisabled people don’t think about. Each day, these dedicated women get me in and out of bed, help me on and off the toilet, assist me with showering and dressing, style my hair, prepare my food and clean my house.

If you required this level of assistance to meet your basic needs, and could not afford to pay for them out of pocket (private health insurance does not pay for long-term home care), you would want to live in a state with good services. I have decided to tolerate single-digit Fahrenheit temperatures and below-zero wind chills because I do not have $50,000 to spend on my personal care each year and I want to have control over how and when I receive my care.

In the United States, most people who require long-term home care rely on Medicaid to pay for care. Some states do not offer self-directed services to Medicaid recipients. Some states have waiting lists for home care, forcing people to remain in institutions. Some states limit the number of hours or care a person can receive. Most states limit the amount of income a person can earn and still remain eligible for CDPA through Medicaid.

New York has a comparatively generous Medicaid Buy-In Program for Working People with Disabilities. As a single person, I can earn almost $60,000/year and still remain eligible for CDPA. There are very few states which permit that level of income while retaining services.

I am not saying New York is the best state in the nation. There are many reasons to want to leave. But when it comes to how I live my life, there are many reasons I stay.

Even if it means another day of freezing cold. Spring is only three months away. I can make it.

Unless I win the Powerball tonight. Then all bets are off because the meteorologist just said it is 6° Fahrenheit this morning and I’m cold.

 

 

Redefining Disability Challenge – Question 40

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

Are you involved in any political or social activities related to having a disability? This could be anything from an advocacy group to an informal social gathering to participation in adaptive sports.

I have always been an active advocate for disability rights. I have spoken publicly about disability issues since I was a child, and continue to remain engaged as an adult.

Sadly, one of the ways I remain engaged is overlooked by the majority of Americans with disabilities – the power to vote. In my mind, voting is one of the most important ways we can become involved in the political process. As soon as I was old enough to vote, I registered with the Board of Elections. I vote each year, not just for large national elections.

Because of my current job with a disability organization, I have frequent contact with local elected representatives. I attend rallies and legislative action days with the Consumer Directed Personal Asssistance Association of NYS (CDPAANYS), the statewide membership association for agencies that assist people who use consumer directed personal assistance for their homecare. Through my involvement with CDPAANYS, I have met other advocates from across the state and developed a stronger peer support network.

I encourage other people with disabilities to become involved in advocacy using whatever methods feel comfortable to them. Some people like to write letters or make phone calls. Others like to go visit their elected officials for meetings. A few activists are willing to be arrested to make a political statement.

When you become involved in advocacy, you make it easier for your elected officials to know how issues impact real people – their constituents and people who vote. I know the man who represents my district in the New York State Assembly. I have been to his office at least once a year since he was elected and see him frequently at events. I send him emails when I notice he has supported legislation important to people with disabilities. He has also reached out to me by email to notify me when pieces of legislation have passed. This relationship would not be possible if I were not regularly engaged in advocacy activities.

In addition to my advocacy efforts through my employer, I am involved in activities at a local independent living center, the Independent Living Center of the Hudson Valley (ILCHV). I have participted in two writing classes hosted by the ILCHV. Not only was I able to practice memoir writing and photojournalism, but I made new friends and developed a deeper understanding of discrimination experienced by those who live with invisible disabilities. I am a stronger advocate due to these relationships.

Nothing makes an impact like a personal story. Hearing an individual’s experience allows us to personalize an issue which may seem abstract. Sure, it sounds great to say all sidewalks should have curb cuts. But when a person tells you they can’t get off their block because the sidewalk does not have a curb cut, the issue changes dimension.

I speak out whenever I can because I am in a position to do so. When I do, I always remember I am exercising my rights because others paved the way for me to do so. I advocate for others who are unable to because keeping quiet would be a wasted opportunity.

Redefining Disability Challenge – Question 39

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-ninth 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 technological advancements are you hoping to see in the future?

I know technology has made a meaningful difference in so many lives, particularly the lives of those living with disability. Text messaging has increased communication for the Deaf and hearing impaired. Dictation software has made it possible for people with limited dexterity to type and write. My elevating wheelchair seat makes it possible for me to transfer to the toilet. Trust me – that is HUGE when it comes to my quality of life.

While technology has improved my ability to engage in the world around me, I am not waiting anxiously for future technological advancements.

I often see videos with prototypes of new wheelchairs or exoskeletons – devices which will, in theory, make a physical impairment less disabling. When I see them, part of my brain twitches and says, “What is wrong with me functioning as I am? What if I don’t want to interact with the world the same way everyone else does?”

There were times in my younger days when I wanted new technology. In the late 1990’s, I eagerly investigated push-assist wheels as a way to avoid transitioning to a power wheelchair. Once I started using a power chair in 2002, I couldn’t wait to have an elevating wheelchair seat. My first roller-bar mouse in 2007 was an answer to many complaints about the physical pain caused by needing to move my hand off the keyboard to manipulate a mouse, and made it possible for me to continue to type for long periods of time.

But now, I just want the world to welcome me as I am. I don’t want a wheelchair that is able to climb up steps like a tank. I want an entrance which everyone can use with ease – whether they walk or use a mobility device. I don’t want gene therapy to replace my “damaged” genetic material. I want to continue to have access to consumer directed home care in the community, rather than an institution. I don’t want to be viewed as an inspiration for simply getting out of bed and showing up. I want people to expect more from someone with my talents and abilities who just happens to use a wheelchair for mobility.