Disability Blog Carnival!

Welcome to the August edition of the Disability Blog Carnival! I’m very happy to be your host.

When I asked for submissions, I decided to make the theme ‘distance’. I think distance is an interesting concept because we use the same word to mean so many different things – the space between ideas, the space between here and there, the space between you and me, the space between us and them, the space passage of time creates, the difference between where we started and where we have gotten to, the space between understanding and not. Intentional spaces, ideological spaces, physical spaces, metaphorical spaces. It’s a word that I think sometimes encompasses much of the disability experience, because there always seem to be more distances we have to deal with.

Counter-Indicated: A visual representation of the distance between the various pieces of medical equipment I am supposed to be using; the buff colored wrist-brace with thumb immobilization can't be worn with the blue forearm crutches. The top of the left crutch and the bottom of the right crutch lean diagonally across the white canvas, trapping between them the buff wrist brace. Created by Kali, copyright 8/22/2010

Without any further ado, I bring you this month’s blog carnival.

From Maggie World, written by the ablebodied mother of a young woman with multiple disabilities, we have A Game of Inches. This post is about how physical distance, physical space can be incredibly important to creating and maintaining accessibility for someone in a wheelchair, using an accessible vehicle.

From Spaz Girl, a teenage girl with spasticity, we have The Importance of Crip Community. This post is about the importance of having a community out here, in ‘our’ space, where we are distanced from ‘their’ space. She talks about the way crip community helps us invision our futures, which are hard to see when all the role models we’re presented with are able-bodied.

From Lene at The Seated View, we have Bridging the Distance, a post about the way sometimes, people who do not have disabilities can expand their understanding and ‘get’ how important accessibility is through events in their own lives.

From Astrid at Astrid’s Journal, we have Then and Now: On Changing Abilities, and Why those Don’t Make Me Fake, a post about how changing over time does not necessarily mean increasing or decreasing disability. Sometimes, all it takes is a change in circumstances to create an apparent distance.

From Hand To Mouth, we have Assistive Technology and Accessing the Digital Divide. This post discusses the distance between how far accessible technology has come and how much technology most people actually have access to. How frustrating it is, to know that we have the ability to allow people to access the world in previously unprecedented ways, and yet we’re held back because the necessary tools aren’t spread widely enough. As the blog said, the bridge is so dear, so tenuous, as to be almost frightening to us on this side of the divide. How easily we could lose that access that we had to work so hard to obtain. And yet – and yet, does the chasm have to be so wide?

From Rightfully Deviant, we have The Community Imperative, a post about finding a crip community where you aren’t at a distance, a place where you and your disability just…fit. Just make sense. Don’t need to be justified.

From Amanda at Ballastexistenz, we have Distance Underthought, a unique post – a painting and an explanation of it that talk about distance and lack of distance where there is…understanding…among those of us on the other side. I don’t want to talk too much about this, because I very much liked her description of the ideas in the painting.

From Yasmin at Damn the Muse, we have So What Do You Have…, a post about a great interaction between her and her new neighbor/friend, that shows that we don’t have to be at a distance if people don’t treat us that way.

From In My Eyes: Life with Cerebral Palsy, we have From the Other Side of the Window, a post questioning film and life interpretations of kids with disabilities.

Finally, my own post. The Space Between is about the way the media creates greater distance between people with disabilities and people without disabilities using a handful of tropes that we see over and over and over. How much this distance could be closed, if the media would just let us tell our own stories in our own words!

Well, that’s it for this edition of the Disability Blog Carnival. I hope you’ve all enjoyed the ride! I sure have.

~Kali

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The Space Between

There is this space that exists between most people with disabilities and most people who don’t have them.

The trouble is, that space is mostly filled by media talk about disabilities, which create some very standard lines about what it means to have a disability. I think there are 6 basic lines of approach: person ‘overcomes’ their disability and triumphs; disability is So! Tragic!; caretakers for people with disability carry unbearable burdens and are angels if they carry it successfully; person with a disability is an angel (especially if they are mentally handicapped) nor “put here by god to teach a lesson”; person with a disability is cured (by hard work, by modern medicine, by non-Western medicine, by prayer, by meditation, by being positive, you take your pick); and people who do not have disabilities can imagine what it’s like to live with one.

But let’s break these down, shall we?

1) Person overcomes their disability.
Er, no. See, the thing is, a disability isn’t like a traditional horse handicap. Horse handicaps worked like this: the horse who was supposed to be the better racer had weights or distance added to try to even up the race. The goal of a handicapper was to get the horses to finish as close to the same time as possible. A photo-finish (that is, where the finish is so close a picture of the horses crossing the line must be examined to figure out who finished first) is the triumph of a handicapper.

We’re not like that. We aren’t carrying around some mystical extra weight to slow us down, nor are we running longer distances (most of the time – don’t get me started on how much longer accessible routes tend to be!). We’re just different. We do things differently. I don’t open jars with my bare hands, I have a tool that grips them and makes them easier to turn. I still get the jar open, just using a different method. I know of a number of people in wheelchairs, or people with dwarfism, who have lowered counters in their kitchen so that it’s accessible to them. I take the elevator instead of the stairs. Right now, with the newest knee injury, I get around on an electric scooter instead of on my feet. It’s just different.

If you want a handicap like the traditional horse handicaps, try looking at lack of accessibility! The number of stores you can’t get into on wheels, the ramps that are canted too steeply to be used safely, the way tilted sidewalks make it harder to move, the way handicapped accessible routes mean around the side or the back instead of up the front, the fact that we have to do better than our able-bodied counterparts to get the same jobs, and so on, then yeah, maybe we’re dealing with a handicap. It isn’t our bodies that make them, though. I’m not triumphing over my disability; if I’m triumphing over anything, it’s society’s views of me.

2) Disability is So! Tragic!
Let me say right off the top that while disability isn’t tragic, the process of becoming disabled (say, via a car accident) can be. It would probably be more accurate to say that it’s traumatic, though. It’s really damn hard to adjust to a new disability. That doesn’t make disability a tragic thing, though; that makes accepting new limitations and figuring out ways to deal with them hard, and it makes dealing with societal views of people with disability really tough to swallow.

I’m not saying that it isn’t hard to adjust. It is. Just like it’s hard to adjust to living in a new country when you haven’t learned the language and culture first. You have to figure out how the locals do things, you grieve for things you had in your old country but don’t have now, you have to figure out how to express yourself in different ways, and you have to break down all your old ideas about what that country and its people are like. So it is with disability.

If disability can be seen to be tragic at all, it is because of the way people with disabilities are treated. Social Security for disabled folks keeps them below the poverty line. Places aren’t accessible. Abuse happens to us at a higher rate because we’re seen as less-than. It’s harder to get, and keep a job because employers also think of us as lesser beings. There isn’t the kind of community support we need. Too many people think of accomodating people with disabilities as giving us special treatment. The Americans with Disabilities Act passed 20 years ago, but we are still not really equal in most people’s eyes.

The most tragic thing about disability is that because disability is viewed as tragic, murdering us is often excused or given a ridiculously light sentence.

3) Caretakers carry unbearable burdens and are angels if they do it successfully
Arrite, let me say first off – some 20% of people have a disability in my country; more in countries where there are things like landmines or severe environmental pollution that cause higher rates of disability. If taking care of us were some unbearable burden, then I think most of us would be homeless or suffering from terrible, chronic abuse – far more than actually are. Yeah, we have a higher rate of both of those than folks who are able-bodied, but it’s still only a fraction of the disabled community.

Now, I’m not saying that caretaking is easy. Even my easy-going, big-hearted boyfriend gets fed up with it occasionally – usually when it’s midnight and time for yet another late-night hospital trip. It is a lot of work, and the world as a whole does not give enough recognition for the hours our families and loved ones and employees put in. My aide isn’t paid even half what I think she’s worth. I think that family caretakers deserve a ton more respite care and financial support than they recieve. I think good caretakers are great people and should be respected for that…but I don’t think they’re angels. I think they have good and bad days just like the rest of us. I think they make choices and sacrifices like the rest of us, though those sacrifices are usually larger than the average. I think they’re human beings with a tough row to hoe.

Part of the reason I’m against calling them angels is that it says that only very few people can do it. And that’s not true! I think most people could be caretakers if adequate support were available. It also says that people who are caretakers don’t need support, which I think is even more untrue. People who are caretakers have more stress than the average person, so they need more support – family and friends who are willing to help and to talk, governmental support for respite care and aide hours, financial support to ease the cost of helping us.

The other part of the reason is that saying we’re an unbearable burden excuses abuse. People with disabilities are abused at a sickening rate. Why? Well, I think it’s a combination of a few things. First off, most abusers pick targets that are not as highly valued as they are – people with disabilities, children, women, and people who are trans*. Second, most caretakers do not have adequate support, especially in terms of respite care. Third, as a society, we have said that it’s excusable to abuse and kill people with disabilities because their lives are tragic and they’re huge burdens. It excuses teachers who abuse disabled pupils because “they aren’t trained to handle them”. It excuses aides and institution workers because “the work is just so stressful”. It excuses family caretakers because “they have to work so hard to take care of them”. It excuses murder because our lives are seen as having less value, especially if the person is mentally handicapped or has a terminal condition.

4) Person with a disability (especially mental handicaps) is an ‘angel’ or “put here by god to teach a lesson”

Wow. Yeah, that one just blows me away. The fact that someone is disabled doesn’t make them an angel, any more than a caretaker is an angel! I’ve witnessed plenty of kids with disabilities throwing tantrums. I know that living treated as a lesser being is enough to make yours truely rage pretty good sometimes. We aren’t angels any more than the next person. We don’t have some divinely kind and understanding souls, we’re just like you, but with a disability. And being of less than average intelligence doesn’t grant a serene disposition.

Now, for people who call all kids angels, I suppose I can sort of understand why they’d want to call kids with disabilities angels, but please consider that it may be construed that you think people with disabilities are angles and might just piss someone off!

The ‘here to teach a lesson’ bit is one that particularly riles me. I’m not your freakin’ lesson! I’m a person. Hey, once again, just like you, but with a disability. And perhaps a few less prejudices, if you see me as a lesson! If you treat me like a lesson, you’ll get one you deserve – that I have a temper! I am a person. I’m here for the same reason you are, whether you believe we’re all shaped in a creator’s image or whether you believe we’re just the most successful genetic mutation. People with disabilities aren’t put here by some greater being to teach patience, kindness, equality, or any other virtue you might associate with us. (though let me tell you, a great many of us would like to teach TRUE equality. In my experience, people who speak of someone with a disability demonstrating equality tend to mean that all souls are equal, not about equality in treatment, in housing, in funding, in hiring, or in any of the ways that people with disabilities are discriminated against) We are just people. We just exist. Same as you. Same as everyone else.

5) Person with disability is cured
Here’s a cold hard fact for you: most people with disabilities cannot be cured.

Hard work won’t cure a disability. It may teach you to cope with the disability in such a way that the disability is not obvious or is no longer difficult to deal with, but it doesn’t get rid of the actual disability. Even though I learned to spell by rote, I’m still mildly dyslexic. My spelling is far better than average because of the way I had to learn it, but I scramble things like phone numbers on a regular basis.

Contrary to the Zoloft commercial where the sad, depressed head bouncing around turns into a happy smiley head, medication doesn’t fix everything. It can help, but most of us don’t get fixed by a pill. And when you get to physical disabilities, the rate of ‘fixed by a pill’ or a surgery doesn’t get much higher. There aren’t many disabilities that can be fixed by surgery.

I believe in the power of healing energy and prayer and whatnot, but I don’t think they can make the body fix things that are impossible to fix. I think that if anything, they make the possible happen more effectively. The same for meditation and thinking positively. None of that will fix my genetic cartiledge defects, and to be frank I’ll get quite snippy if people start trying to push their prayer cure.

6) People without disabilities can imagine what it’s like to have a disability.

Um, no. No and no and no. First off, you can’t imagine what it’s like to have my disability because you can’t wrap your head around how pervasively it affects my life. It comes down to everything, even the way I hold my hands to type and brush my teeth, how I lay to sleep at night, what clothing I choose to wear. Secondly, you can’t imagine how I’ve adapted to it. When I busted my knee the first time, I hit the point where I could carry a tray and use crutches the first time within a couple of weeks. Humans are amazingly adaptable creatures – it is the greatest strength of our species. If I could learn something that required that much concentration and coordination that quickly, how much do you think we adapt to years of living with our disabilities?

If you sit in a wheelchair and push yourself around a bit, you’ll understand how much muscle you have to develop to easily push yourself around all day…but what most people will ‘learn’ is how hard it is to push yourself when you don’t have that muscle! (in all likelihood, they’ll have you sitting in the heavy hospital style wheelchairs that are really meant to be pushed by someone else instead of the low-backed, low sided, lightweight chairs that most people with disabilities use) Borrowing my forearm crutches may make your arms sore, but it only takes a couple of weeks on them to get used to it. Trying to wander around with blinding goggles or a blindfold on doesn’t teach you what it’s like for a blind person to navigate, it teaches you that you don’t know how to. I really, really hate those ‘disability’ demos that pop people into different kinds of adaptive equipment. All people really learn is that they don’t know how to use the equipment we live with, but they THINK they learn how hard disability is. And then they pity us. Yet more space that puts between us and them.

The space between people with disabilities and people without could easily be narrowed by real disability narratives – our stories, told by ourselves. How much better we might be understood with a few less ‘wheelchair bound’ narratives and a few more ‘wheelchair using’ stories! I wish that people could see Paralympic athletes as what they are – people who have trained and are at the peak of fitness and skill at their sport, instead of ‘poor crippled folks who have overcome their disabilities’. We overcome nothing but societal prejudice, and work WITH our bodies! One of the first things we have to learn is to stop fighting our disability and adapt to it. But your average journalist has never had to learn that, and doesn’t have the training to listen to us explain it. As long as our stories are told by people without disabilities, people who can’t really understand us, this gap will continue to be, and we – people with disabilities – will suffer for it.

(updated to add, whoops, I forgot point 4)

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Getting it right – Blogging Against Disableism Day

One of the ways I think we can fight ableism is to talk about people who get it right. People who treat us as human beings, particularly people who are able to work with or around our disabilities and not treat us as our cultural status quo demands they should. We talk a great deal about the way the world gets this wrong, about the way we are shunted aside, about the way people turn our actual physical impediments into societal disability, but we do not often talk about when things actually go RIGHT.

(which is not to say that the discussion of how things go wrong is unimportant or finished – I think both halves of this issue MUST be publically, unceasingly discussed or we will never see change.)

So how do people get it right? The most basic thing is that they remember our humanity and respect our autonomy. To give a very basic example of how respect of autonomy works, the fact that I cannot cut up the potatoes I want for dinner does not mean that I cannot have them done the way I want. If a person who is aiding me to prepare my dinner asks me how I want the potatoes done, and does them the way they ask, then I still have autonomy because I was able to make decisions and direct outcomes. Autonomy is not about being able to do everything for yourself, it is about being able to direct your life and have things done to match your desires, whether or not you are personally doing them.

So who gets it right in my life?

The boyfriend.

The boyfriend and I have been together for over 2 years. He’s gotten used to the fact that if things need to be lifted, carried, or picked up, I generally can’t do it. That most of the responsibilities in the kitchen will fall to his shoulders, because my hands aren’t up to it. He even carries my purse when we’re out and about without getting goofy about it the way some guys do.

He’s also learned the boundary between things I can sometimes do and things I really shouldn’t do. So he’ll ask me how near to our destination I need the car parked, because some days I can walk 4 blocks and some days I need to be dropped off at the door. He doesn’t ask if I want him to take the bag after I’ve made a purchase, because we both know I shouldn’t be carrying things. It’s a delicate balance, between helping too little and helping too much, and it requires a great deal of attention to maintain.

He does not take advantage of my disability. A great many of people with disabilities, especially women, find themselves abused by their caretakers and/or partners. Any time you have a power imbalance, there is a risk that someone will take advantage of it without regard for the harm they do. I think the boyfriend would be nauseated at the idea of ever taking advantage of me in any way, and for that particular aspect of his character I am very grateful. I know, as a woman with a fairly severe physical disability and an emotional disorder, that I could easily be abused and harmed by a significant other – and some of that has befallen me in the past. But with the boyfriend, I am safe because I am never less than a person, never less than he, in his mind.

My doctor.

My doctor never talks down to me. He remembers that while I am the patient, and much less knowledgable about medicine (not to mention unable to look at places like the inside of my own ears), it is my body he is treating. When there are treatment options, he tells me, and explains why he prefers one direction over another. He does not tell me ‘You Must Do X’, he tells me ‘I think we should do X.’

It may not seem like much, but it’s a world of difference to me. Especially with complex, chronic patients (like yours truely), doctors forget sometimes that they are our advisors and employees, not gods. It’s a level of respect for my right to have input into the decisions about my bodies that is unfortunately rare.

Additionally, I never feel as if I am an illness to him. I am a person, a person he remembers is a law student who loves crafting and art and has a plethora of hobbies. It does not matter whether I am seeing him for a new issue (like my ear infection) or a chronic issues (like my back), he listens well and considers how my many medical conditions could be interacting with the issue we’re discussing. He does not grow frustrated with me because of the way my body reacts, nor am I ever abused for not being able enough or healed enough after his intervention. To my doctor, I am a patient he helps to be healthier, not a lump of flesh in need of his fixes and treatments.

My Personal Care Assistant

My personal care assistant, Nikki, has been with me for 15 months now. The relationship between a personal care assistant and a client can be very difficult to navigate. In most cases, a personal care assistant is responsible for a lot of taking care of the home and the body of a person with disabilities. There are a great many landmines that show up in the relationship between a PCA and a client.

My PCA does things my way, even if she’d prefer to do them a different way. Yeah, she thinks it’s a little funny how obsessive I am about cross-contamination, but she’s respectful about it and keeps my kitchen safe and clean. She remembers how insistant I am about having my books organized by author and series, so that I can quickly find what I’m looking for. She doesn’t complain about the messes I end up making and not being able to clean up because of my disability. When approaching things she doesn’t know the answer to, like how I want things cut up for dinner or where a new item should go, she doesn’t just decide for herself and hang me with the consequences if I don’t like it – she asks me, and she does what I’ve directed.

She also does not treat me as a paycheck. I know that some PCAs get into this industry because they just need a job and someone to pay them. Nikki actually cares about me as a human being, and we joke about our significant others, the state of the world, our neighbors, and so on. She does not lie to me. She does not steal from me. She contacts me if she is going to be late or if she cannot come so that I can get someone else to take care of me. She does not refuse to do things I request that are part of her job (and actually, is willing to go pretty far outside of her actual job requirements if I ask for help). She does what I request, when I request it. She does not make me feel like a burden. She does not use her power over me to harm me in any way.

All this may seem like things you would assume to be true about someone in the service industry, but I can assure you that I have known of PCAs who violate all of these trusts and more. Me, well, I’ve been lucky, as Nikki and the boyfriend are the only people who have ever worked for me as PCAs, and both of them have the basic respect and decency to remember that I am a human being worthy of dignity and respect. I consider Nikki a friend as well as an employee, and I value her greatly.

To sum this up, there are a great many ways that we as people with disability are vulnerable to abuse. That vulnerability springs in part from our impairments themselves, but mostly from the societal view of us as lesser beings, in much the same way that a woman’s vulnerability springs both from being (on average) less physically strong than a man and from societal ranking of women as less than men. Part of fighting that abuse is talking about it, but another part is talking about relationships that are safe, that do not involve abuse. Healthy relationships. Relationships in which we are equals, in which we are people, in which we can trust.

And so, people of the world, whether you are people with disabilities or people who are ablebodied, I challenge you to think not only on living with ableism, but to think also of times and places where we are do not.

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Coming up…

On May 1, I’ll be joining in on Blogging Against Disableism Day 2010.

Please, join in! Write about how ableism affects your life, write about the idea of ableism, write about your thoughts on the artificial border between 'ablebodied' folks and people with disabilities, anything you can add to the conversation.

The only way to defeat ableism is to take a stand against it. Join me and many fantastic bloggers in working on breaking down this barrier.

Also, May is EDS Awareness month! I'll write a special post for that, and I would very much appreciate it if you would link in your journals so that we can increase the knowledge people have of this rare illness. If it were not for people online providing me information about EDS, I probably would have never been diagnosed. Let's spread the word!

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Trapped! (Blogging against disabilism day)

Trapped. I can’t tell you how often I can’t get in or out of buildings, many of which are technically accessible.

The number of obstacles that show up is…astounding. I would never have thought about it before I became disabled. I have been trapped outside in the pouring rain hoping for someone else to be going into the building I’m standing in front of and let me in. I have had to wait for someone to finish what they’re doing and come unlock a gate. I have been stuck outside because the electric door opener was disabled because it was very cold out and someone decided that having the door opener working let in too much cold air.

First, there’s the most typical one – a heavy door. Now, I understand that most folks in wheelchairs don’t like having the good samaritan rush over and open doors for them. They’ve got their own way to get through the door that they’re quite used to, thankyouverymuch. Coming to their ‘rescue’ actually means getting in their way and often making the door navigation harder. It also means burdening them with the expectation that they’re going to be tremendously grateful for the insignificant action.

In light of this, I am often hesitant to point out that I DO need doors opened for me. Simply opening doors is a risk for me – will I dislocate my fingers, my wrist, my shoulder? Pull a muscle in my back? Opening doors is one of the most frequent sources of injury for me. So for me, having someone pull open a door is a tremendous help…but should I have to wait for that?

You see, many businesses seem to just assume that we PWDs will be happy with inconveniences and waits for people to come fix things.

The worst case of this that I have spotted in my area are the shopping cart traps.

I live in an urban area. Understandably, this means that stores deal with theft of their carts.

The best way to deal with this, as far as I can see, is to use the magnetic wheel locks on carts. You do this, and you can protect your carts without actually inconveniencing anyone significantly. The drawback of course is that these systems are expensive to put in.

There are 2 common lowtech solutions.

The first is the tall pole attached to the cart. It goes up too high to go through the door, so the carts are trapped in the store. For me, this is a bit of an inconvenience – crutches and carrying bags do not blend well, so I end up very awkward on my trip to the car, and have a fairly significant risk of tangling myself up and stumbling. However, it is so much better than the other low-tech solution that I do not complain.

The second solution is to set up a little area surrounded by posts outside of the supermarket. Now here’s the thing: if the posts are close enough together to keep shopping carts in, they are also close enough together to keep wheelchairs in (or out). These relatively narrow spaces are also difficult for people with crutches or service dogs to navigate, and can be very confusing for the service dogs.

Okay, so places like this obviously have to have a gate that opens wider. But because they are terrified of losing their shopping carts…the gates are padlocked closed. This means that a PWD in a wheelchair has to ask someone going into the store to please inform an employee that they need to be let in. I’m sure you can imagine how long this can take.

In theory, to the letter of the law, this place passes as accessible, but is it really accessible if PWDs have to request admission and wait for someone to come allow them to enter? It’s tremendously unwelcoming and makes a person feel like a second class citizen. Everyone else can just walk in, but PWDs have to sit there and wait, and hope that the customer who said they’d tell an employee to let them in remembers, and that the employee remembers and has time to do it…

When I recently addressed a grocery store about this, they offered the fact that a local regular could request a key to the gate as ‘evidence’ that there wasn’t a problem – obviously PWD customers who are not locals just don’t matter.

Pseudo-accessibility is unfortunately common and hurtful to deal with. We need real accessibility, and real treatment as human beings. This is a place where the law will not do anything so we, as individuals, must express our feelings about this terrible practice so that it will change.

And it can be changed. One of my law school buildings now has an electric door opener it didn’t have before, simply because I spoke up and sent a lot of emails. We can make change happen, but it requires making people who are AB understand that we need it.

Fight ableism and demand equality!

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I’m BADD! (blogging against disabilism day)

Folks, one of the contributions many of us make towards changing the world one piece at a time is Blogging Against Disabilism Day.

You are welcome to participate if you are interested in writing a post on May 1 about disability discrimination, disablism or ableism.  Whether you are non-disabled, a person with a disability, someone with a cane, crutch, or chair, disAbled, crip, gimp, differently abled or any way you want to describe it, you are welcome.

Please join me! Let your friends and anyone who reads your journal know that people with disabilities are people first!

Blogging Against Disablism Day

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