The Redefining Disability Project: An Elevator Is…

Today we have a guest post by Jen.  I’ve had similar experiences with my management company and the elevator, so don’t assume this is an unusual situation.  At my place we get periodic notices that say “the elevator will be out of service today between the hours of 8-4 for routine maintenance.” My building has no less than 8 tenants who use wheelchairs or have mobility impairments!

Jen and I are perfectly well aware that sometimes things break. The management company can’t predict when an elevator is going to break down, but when you are managing an apartment complex that claims to have WHEELCHAIR ACCESSIBLE housing, then every effort should be made to assure that your tenants who use wheelchairs can access the building. Wheelchair access is more than just throwing some grab bars in a bathroom.

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The Redefining Disability Project: The Extended Info Post

What is Redefining Disability?

Redefining Disability is an interactive blogging project I developed in order to promote better representation for people with disabilities in the media.  See this post for more about the project’s goals and ways you can help.

What Is “Disability” and Why Are We Seeking to Redefine It?

The concept of disability is a social construct. That makes it hard to answer the question of “what is disability?” Because the definition changes based on cultural models and preconceptions.  Basically, the answer will depend on who you are asking.

In our culture, I think people tend to define it as “a biological limitation” or “bodily imperfection.”  That definition is harmful and based on the assumption that some human bodies are “normal” or “function within normal parameters” while others are sub-par and/or broken.

Historically, people with disabilities have been feared, mistrusted, treated as objects of shame and derision, and viewed as less capable or incapable of leading independent, self-sufficient lives. That is changing, but the overwhelming view is still that disability is a “problem” or tragedy that an individual has to overcome.

The Redefining Disability Project exists to challenge these cultural perceptions. This project takes the view that “disability” itself is not a problem but a natural part of human experience.

All so-called disabilities are natural, even if their origins relate to physical or mental trauma. I don’t equate “disabilities” with problems or limitations on an individual level.

The problem is with the society that limits people, not with the individuals whose bodies function differently than the perceived norm.

For a more detailed explanation, please check out this post the September 2014 round of Redefining Disability entries.

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How to Participate in the Redefining Disability Project.

The Redefining Disability Project has three independent features. (It’s been expanded from two when we started in 2014.)

  • The first feature of the project is a series of topical/information related articles posted on rosebfischer.com. These are general social commentary, informational, and media related posts. Anyone is welcome to contribute.  See Guest Posting below.  You can also participate by answering the questions posed at the end of each of these posts.
  • The second feature of the project is The Redefining Disability Awareness Challenge. The Awareness Challenge is a series of more detailed questions that I’ve put together for bloggers to answer at their own pace on their own blogs.
  • The third feature of the project is a collection of posts that are specific to writing and storytelling with characters who have disabilities. For 2015, these posts focus on Adanna’s Beginning, a story I began as an example piece for Redefining Disability.  You can participate by taking part in story analysis discussions and reading/commenting on the finished stories as they are posted.

Guest Posting/Author Perspectives

I want the Redefining Disability Project to be about more than my personal opinions and perspectives, so I’ve opened the series up to any blogger who wants to write about disability issues, especially related to media perceptions and social constructionism. If you have a post or an idea for one, please read the Guest Posting Guidelines and use my contact form.

For a little more on my background:

I’m a woman in my late thirties.  I was born with cerebral palsy and use a wheelchair.  I’ve acquired several chronic health challenges through my 20s and 30s.  I have a background in disability education and advocacy on a volunteer basis, but they are not my career focus.  My views related to disability are mostly (but not entirely) consistent with the Independent Living Movement’s core philosophy.  There are some aspects of disability I can speak to quite well, but others with which I have no direct experience.

Who can contribute?

Anyone is welcome to contribute, but I’m specifically looking for authors whose experiences with disability are different from mine.

The Redefining Disability Awareness Challenge

The challenge runs independently from the topical series and Adanna’s Beginning. That means, if you’re taking part in the challenge, you can make your posts weekly or monthly however you choose even when I’m not posting topical content.

Beginning in June 2015, you must sign up to participate.

  1.  Create an index post or page on your own blog.  The easiest way is to simply copy the challenge questions and paste them into your post or page. Then, as you answer questions add your own link.  (Please don’t simply link to a category or tag on your blog.  I have RSI and can’t scroll through these very well.)

Add a comment to the Masterlist 

Please include the following:

Your name:

Your blog URL:

The days you will be posting:

Link to your challenge index page:

If you’re currently making challenge posts, you can continue as you are.  If you don’t have a challenge index page, please create one by July 30 2015.

2. Please include the words Redefining Disability Awareness Challenge Question # in your post titles! The question # is important for me to build the anthologies!

3. Please tag your posts “Redefining Disability.”

If you’re sharing posts on Twitter, please use the hashtag #RedefiningDisability and please only use ONE additional hashtag.  (Share the post again the next day if you want to use different hashtags.)

The Redefining Disability Project #7– Author Perspectives: Less and More Revisited

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Note: Author Perspectives are open to anyone who wants to post about their experiences. They can be a response to a previous post in the series, a new topic focusing on the author’s experience as a writer/creator who has characters with disabilities, or a story from your own life.  They can also be responses to the Redefining Disability Awareness Challenge if you want to post and don’t have your own blog.

Check out the posting guidelines for details.

At the beginning of September 2014, I posted about disability as a social construct.

Jen Decker replied to my post with one of her own on the same subject.

I followed up with a post about a real-life conversation that I had about disability, prejudice and assumptions.

Natacha Guyot joined the conversation with her own posts about social constructs as they’ve affected her life.

Today, I’m going to be responding to the question Jen’s post poses.  Eventually, I swear, I will reply to Natacha as well.

Society believes that my wheelchair, my inability to use one of my hands makes me less than. For me, “more than” is a work in progress. What is your “less than”, and how will you be “more”?

 

I’ve written a lot on this blog about ways that society sees me as “less than.” From a disability perspective, it’s my gait, my use of adaptive equipment, and the fact that I can’t drive.  I wrote about that extensively in this post.

I believe that society also sees me as “less” because I’m a woman, and still less because I’m a woman who can’t have children, and even less than THAT because I’m a woman who choses to be single.

In another sense, society sees me as less because I’m poor. I have been homeless, and have been on food stamps, and I currently recieve SSDI (Social Security Disability Insurance.)

Many groups, on both sides of the “LGBTQ+” battle in my country, see me as less because I don’t fit in anyone’s happy little box.

As to how I will be more, I have a hard time answering, because I never think about it. I never think about making myself more than society wants me to be, because I already AM more.  I don’t have to prove it, though I’m willing to stand up for my right to be treated as a human being with the same rights and responsibilities as any other.  I’m fortunate, because unlike many of my peers in the disability community, I’ve never struggled with my self-perception.  I KNOW that I am more.  One of the biggest reasons I’m doing this project is because I want the next generation of people with disabilities to know that they are more.

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  • In what ways do you depend on others in your daily life? In what ways do others regularly depend on you?
  • How would your life be different if these interdependencies weren’t there?
  • How do you regularly rely on technology and invention to help you in your life? Do you feel that reliance on these devices defines you as a person? Why or why not?

 

Redefining Disability Story–Adanna’s Beginning: Homecoming (Alvarez)

Homecoming

This is a short story I wrote in connection with the Redefining Disability Project. You can find more information about the “Homecoming” series and other Redefining Disability Stories in this post.

Note: I’m thinking of changing the series title to “War’s End,” since the signing of the treaty that ends the war the characters have been fighting actually becomes a holiday called War’s End and I think the phrase has a more scifi feel to it.

This is sort of a scifi-romance meets space opera prequel.I’m bad at genre labeling.

Cover image credits:
Stock–resurgere
Textures–rosebfischer.com
Design–Rose B. Fischer

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Sunday Update: What’s Next for Redefining Disability

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This is sort of a follow-up to last week’s update. I decided that I am going to call it quits for the year and pick up with the project again in 2015. I’m going to close this round of posts with one of the stories I’ve written for the project (So, yeah, ditching the schedule. Surprise, surprise.)
Like I said last time, I will still be re-blogging everyone’s challenge posts and anything else that you want to write up, so feel free to keep going at your own pace!

The story will go live on Friday, October 31. No, it has nothing to do with Halloween.

Feel free to post comments/questions etc, or to email me with them. I’ll be saving everything up for a new round next year.

It’s called Homecoming: Alvarez, and it functions as kind of a prequel to a new series I’m developing about a space-exploring starship captain and her journalist girlfriend who are going to be traveling together into an unexplored region of space. (There’s also a side project, with a bunch of different “home-comings” for related characters in the same universe.)

So far, the stories I’ve worked up deal more with the character’s personal lives than with the main “roles” I’ve envisioned for them.

  • Alvarez is a starship captain, but the story focuses mainly on her relationship with her girlfriend.
  • Gisela organizes an underground rescue movement, but her story focuses mainly on her family life.
  • Solata is an independent frieght ship captain (think Han Solo) but her story takes place before she wants to fly.

 

I went that route because it was easier for me to come up with shorter, standalone works that could function as examples. So, there’s a lot of stuff they these examples may not cover, and I’ll have to come up with some other ones over time.

(Fair warning, most of my stories are set in societies that are culturally bisexual and most of the characters are gray romantic, so if you’re homophobic or otherwise uncomfortable with “non-traditional” relationships, you’re not going to deal well with my example-stories.)

For next year, I have a handful of posts that haven’t gone live yet. I also have 8 posts for the Redefining Disability Awareness Challenge, and I’ll be wanting to do an analysis on the Alvarez story.

My plan right now is to pick up in January with my challenge posts. It seems like January is a time when a lot of people are looking for new stuff to do, and new bloggers get started, so I think the project will benefit from a bit of focus on the challenge.

Then I’ll do a round of responses and followups to the September-October posts. (Including the story.)

Once that’s done, I’ll see where we are.

Some things you should check out if you haven’t already.

Shan Jeniah made an awesome post about People First language, and it’s probably going to feature heavily when we get to the discussion about language. (That’s why I haven’t re-blogged yet.)

Kerry posted about her daily routine here, which was very informative and will probably be useful to anyone who is looking to write about a character who is blind or has low vision.

The Redefining Disability Project #6: The Visibility Problem

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This post is a little impromptu change of plans. I was going to post about a news video I saw recently, but I’m moving that post out a while because I’ve realized that a lot of my posts thus far have focused on the “visible” aspects of disability.

I use mobility aides.  I have physical characteristics (like a lazy eye, a foot that turns inward and a weird gait) that make it obvious I have a disability. People can see those things, so if I say, “I need an accessible bathroom,” “No, I can’t stand that long or walk up that flight of stairs,” or “I have a visual perception problem,”  I usually don’t have to justify my statements or provide additional proof.

I say “usually” because I have had conversations/arguments about accommodation and whether or not I actually need certain accommodations or medical equipment (Including my wheelchair.  Yes, I’m serious.) Generally, though, those discussions happen with social service providers, school officials, business owners, or medical professionals. The average person doesn’t bat an eyelash about the idea that a person with cerebral palsy might need mobility devices or accommodations.

When it comes to anything that is less obvious or visible, like a chronic health condition or migraine headaches, it’s often another story. I’m posting an excerpt of a facebook chat I had with family members about whether or not I would be traveling to attend out of state family events that are coming up. You might be tempted to think that these experiences are unique to me or unusual, but they’re quite common to many people who live with “hidden” disabilities and chronic health problems.

I’m editing for spelling and typos, removing or changing some details, and changing my real name to  “Rose” but the pertinent conversation is the same.

Family member: How can I get you to Grandma’s surprise party next month?.  [detailed discussion.]

Me: I’m sorry, I can’t be in a car for more than 45 minutes at most. My legs swell and I get migraines really bad. There’s no way I can make a trip like that.

Family member: We are coming up to see you soon.  [detailed discussion.]  I want you to be at my wedding.

Me:  I’d be glad to see you, but unless you’re planning to get married in Nashua, I really can’t come. Congratulations though.

Family Member: Why cant you travel?

Me:  I get really bad migraines that last about 7-9 days once they start.  Being in the car tends to trigger them because of motion sickness and glare.  My legs swell if I’m sitting in a car for long periods of time. I also have stomach, bladder, and bowel problems.

Family member: I  never knew that, sweety.

Me: I’ve had migraines/cluster headaches since I was about 13, but they’ve gotten a lot worse in the last 8 years or so. Stomach problems started when I was 17 and go on and off different periods. Gets bad for a while, then better, but I’ve always gotten motion sick even when I was a kid. When we came to Long Island, I always had to drive the whole with the window open otherwise I would get sick.

Family Member: I will talk to you tomorrow got work at 8 am. But you’re making excuses not to try. That’s not my Rose that proved she could walk. Night.

Me: I’m not making excuses. I am in pain every day, and migraines are excruciating. I love you, and I respect you, but that’s rude, and unfair. Please don’t talk to me like that.

Whether or not I “proved that I walk” has nothing to do with whether or not I can make long road trips. I happen to love road trips, and before my chronic health problems developed to this extent, I used to travel every year. I’ve seen every state on the East Coast, and I’ve been to Canada. I miss doing that, and I miss my out-of-state family, especially my grandparents.

It should be enough for me to say “I’m sorry, I can’t go.” That should be enough for anyone in any circumstance, but especially for a person with pre-existing health problems.

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There’s a prevailing attitude that any health problem or disability can be overcome with enough effort and determination. The end goal — in this case, getting to my family events — is the only thing that matters. There’s no thought for the quality of experience that the person with a disability or even other family members are going to have and whether the ultimate goal is worth the suffering and sustained effort involved.

I’ve said before that there’s nothing wrong with wanting to improve your physical or mental health.  There’s nothing wrong with wanting a “cure” or trying to “overcome” a disability if that’s what’s important to you.  The reality is that certain things just don’t work that way. No amount of effort is going to make it possible for me to travel multiple days by car, and I doubt that a plane trip would be feasible either.

I’ve also heard other family members say things like, “We would stop the car for you to throw up.”

Imagine stopping the car for me to throw up twice or three times an hour. Then imagine me struggling to get out of the car with swollen legs while I’m throwing up AND my bladder or bowels have chosen this moment to let go — which happens a lot because I have spastic cerebral palsy, overactive bladder syndrome,and a host of GI problems.

Keep in mind that I have chronic tendinitis in my arms now, so I will most likely need another person to help me in and out of the car and offer me physical support while my various orifices are spewing bodily waste.

Add to that the intense pain of a headache episode that feels like someone has attached a vice to one side of my head and is repeatedly slamming a baseball bat into it while drilling into my eye with a power-tool.

While that’s going on, my hands, arms, and my face feel like they’re on fire, I can’t relax, my nose is running, one eye is tearing and impossible to keep open, and I may or may not be able to see through it.

Imagine that these symptoms ebb and peak cyclically over 72 hours, but the whole thing keeps coming and going for 7-9 days.  (The last one went on for 21 days.)

If I was able to make the trip, I would probably be badly dehydrated, blind in one eye, and need to spend several hours getting treated in an emergency room.

Nobody would be having a good time, least of all me. I would have no positive contribution to make to my family celebrations — I would be miserable and all I would really want is to go home where it would be quiet and I could rest.  (Except that my home would be days away.)

It seems to be easier for people to understand and accept that something “visible” like cerebral palsy is a “disability,” but it’s much harder for anyone to grasp that chronic pain or “invisible” issues  of any kind can also have serious, even debilitating, effects.

I’ve found little to no understanding of issues related to comorbid health problems and disability. What I mean by that is, if I just had cerebral palsy or even just cerebral palsy and an occasional problem with my bladder or bowels, I wouldn’t hesitate to make a cross-country trip to see my family.  If I just had cerebral palsy, or even cerebral palsy and and chronic tendinitis, I wouldn’t mind asking for help getting in and out of the car. Unfortunately, I have cerebral palsy, chronic tendinitis, bladder and bowel problems, and two different types of severe headache all at the same time.

When a person has more than one disability, or a disability that is complicated by multiple factors, the challenges and issues involved in managing the disability become vastly more complex.  Things that wouldn’t be deal-breakers or major issues by themselves become huge problems.

“Ability” isn’t static. People’s lives and abilities change over time.There are always adjustments and changes that need to be made.  That’s something most people who are born with disabilities understand fairly early in life.  It seems like part of the social construct we’re wrestling with here is the concept of “ableness” versus “disability” both as statiic phenomenon.  People assume that their physical health and abilities are going to stay the same from their midteens all the way through to whatever age they think of as “elderly.” It really doesn’t work that way.

The fact that I learned to to walk even though doctors said I wouldn’t doesn’t automatically mean that I should be able to bulldoze every health problem that comes along. I am still the same person. My worth as a human being shouldn’t be dependent on whether or not I can defy medical odds or bear up under extreme pain in order to do things that other people are doing. I am a worthwhile human being and I have accomplished things with my life, whether or not I’ve heroically “overcome” my medical problems.

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  • Do you regularly attend family reunions or other family events?
  • Under what circumstances would you stay home from one of those events?
  • How would your absence be perceived by your family?

Redefining Disability for Writers # 1: How the Social Construct Posts Can Help You

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When I started The Redefining Disability Project, I had a pretty simple plan. Lay out a definition, talk about how the whole idea of “disability” is based on a social construct and is therefore impossible to define in terms of medical criteria, and then lead in to Heather Massey’s post about the Social Model of Disability, which is pretty much the foundation of everything this project hopes to accomplish.

The response to my post about disability as a social construct has been surprising. Mostly, it’s a pleasant surprise, and I’m very glad that there’s such an interest, but I have to acknowledge that I billed this project as “practical tips and examples for story creators,” not “a series of essays about social constructs.”

I also said the project would be interactive. That means I want it to grow and develop around with your response. I want to continue the social constructs conversation, but I also want to make sure that I’m providing immediate, practical help for those who want it.

(I realize some of you will benefit more from concrete examples.  I feel like that would be jumping the gun at this stage, so I’m going to move more slowly for a while.)

So, there are a number of ways that all of the social construct posts can help you in your effort to create authentic characters with disabilities.

Firstly, recognizing the idea of disability as a social construct instead of linking it to specific categories of medical problem is crucial in portraying authentic characters.  Here’s why.

Reaction to my social construct posts has been polarized in two categories.  One is people who live with recognized “disabilities.” They respond by saying, essentially “Yes, that’s exactly it.”

The other group is people who express mixed feelings or discomfort because they experience medical problems that “fit” my definition but don’t identify as having a disability.   The implication is that some of these problems may be “real” disabilities while others are simply a problem that the person can cope with.  So, then who is to decide which “condition” is a real disability and which is not? Using a medical model like this, we can’t, because everyone’s experience is unique.

Even within the same “condition” or set of medical problems, there can be a wide range of experiences.  One person might consider it a “disability” because of how it affects their daily life. Another might not because they don’t experience the same range of effects or don’t think of them as a “big deal.” Some people just avoid the label of disability because they don’t want to associate themselves with it.  That can change over time, as a person’s life experiences change.  Nikki has a fabulous post about that here.

All of this is why legal definitions of disability focus on functional criteria, not specific conditions and diagnoses.  In the US, there is a list of specific conditions that will usually qualify someone to be legally disabled, but you don’t NEED to have one of those.  You need to meet functional criteria, like having significant problems with working or ADLs.  (Note: This concept is different from metaphorical representation.)

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The first step to portraying an authentic character with a disability is to think about how the disability integrates with the rest of the person.  How does it affect the person and how can you show that without having it dominate your plot/character development?

One purpose of this project is to question the notion of disability as a defining characteristic and to help people realize that disability exists on a spectrum that isn’t limited to a set of medical criteria or established medical conditions.  Characters who have recognized disabilities such as ADHD or Spina Bifida are not “defined” by their diagnoses, and there are new medical conditions discovered daily.

There was a time in very recent history when “ADHD” wasn’t a recognized disability.  That fact does not diminish or invalidate the experience of people who lived with ADHD symptoms before a clincial diagnosis existed.  The validity of many mental health and chronic pain disorders as disabilities is still often called into question even though they have established clinical diagnoses and can be debilitating.  “Disability” is not synonymous with “diagnosis,”and it can’t be catalogued or identified by a list of symptoms or a mix and match of experiential anecdotes.  The only adequate and effective way to decide what does and doesn’t count as a disability is by using a definition that is based on the social model.

I’m not suggesting we ignore medicine or the contributions of medical treatment in managing disabilities.  Nor am I saying that a person in real life should claim they have a specific condition without a valid diagnosis.  That would be irresponsible. I am suggesting that people question the medical model of disability and the notion that a person’s life experience can be defined by only one part of their make-up.

I don’t believe it’s possible for anyone to write authentically about characters with disabilities or health challenges of any kind unless the writer is willing to recognize and accept that people’s lives are never defined by one aspect of who they are.  My life can be influenced and affected by my disability in very significant ways. My life can also be influenced and affected in equally significant ways by my gender, my religion, my economic status or any number of factors that affect how people see and relate to me.  Arguably, all of them can be seen as social constructs.

So, with all of that being said, here are some practical ways that the social construct discussion may be of use to you as a writer.

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  • Jen and I are both women who were born with disabilities and our perspectives are (mostly) in line with modern, progressive attitudes about disability, what it is, and how to approach it.  We’ve both worked as educators within the disability community, and our education and training is heavily influenced by the Independent Living Movement.  Our posts are valueable as insight into what people living with perceived disabilities actually think and feel about our lives, and as gateways to better understanding of issues related to social equality for people with disabilities.
  • Kerry was also born with disabilities and has written about her experiences in connection with the Redefining Disability Awareness Challenge. Her experiences and perspectives have both similarities and differences from ours and provide a valueable counterpoint since her disabilities are different from ours.
  • The questions at the end of the posts on my blog are meant to be general. They’re not specific to people with disabilities or disability issues. By answering them for yourself and for your characters as a writing exercise, you may begin to see your characters and their so-called “disabilities” in a different light.
  • Depending on the genre that you’re writing in, you may be able to use the idea of social constructs and questioning them as part of your world building or story theme without making the story an object lesson or morality play about disability. The first step to doing that is to understand disability as a social construct and how pervasive that construct is.

Rather than asking questions this week, I’m going to suggest a writing exercise. Look back through the previous posts for September.  You can find them here.  Answer three or more of the questions for yourself and your characters, but don’t focus exclusively on “disability.” Ask yourself how else those questions might apply and what the answers might tell you about yourself, your character, and the culture you are writing about. Post your answers on your blog, if you have one, and I will link to you in an upcoming post.