Give Me a Q, Give Me a U....

Years ago after I acquired quadriplegia, I bought a book named something along the lines of The Pep Coach. It was a series of short pep talks on various topics aimed to motivate the reader. At the time I felt stuck and really believed that motivation was my problem. It took meeting others with disabilities to understand that what I needed was not a pep talk, but a way to find resources and equipment to work and live.

I was fortunate enough to meet many others with spinal cord injuries while playing adaptive sports. I saw how they worked around real issues such as accessible housing, transportation, specialized computers, and home care if needed. I was astounded to discover that many solutions were out there which up until then no one had told me about. Meanwhile I was, so to speak, spinning my wheels trying to discover solutions, many of which weren't working or were time consuming. I may have appeared unmotivated to friends and family, but the truth was I didn't have what I needed to be mobile and productive.

Anyway my copy of the little pep talk book got lost along the way. Maybe one of my nondisabled friends borrowed it. Who knows? But it taught me a valuable lesson about judging a disabled person's motivation. It's necessary to be careful not to assume that the person is unmotivated prior to investigating whether he/she has access to what's necessary to accomplish a goal, like a wheelchair, a ramp, or other equipment.

Maybe a more useful approach is to forget the pep talks and work on the reality of getting more information, equipment, care and other resources to those who are motivated, but languish in the system.

Governor Paterson on SNL...

addressed the issue of disrespectful treatment of disability on the show. The real governor appears about 2:30 minutes into the clip.

They could be allies

A friend of mine was in the post office in her wheelchair when she overheard a man with a leg cast on telling another friend how he was so glad he was no longer "wheelchair bound". In front of her, as she sat in her wheelchair, he told his friend how he couldn't go out in a wheelchair or do anything. His friend commiserated with him.

Then this morning I see this article by a teacher who was temporarily using a wheelchair. She writes how it kept her "homebound and schoolbound".

Neither person who had the experience of being in a wheelchair got the point: it's the fact that there isn't adequate transportation that's more of an issue than "being in a wheelchair" or, as people keep insisting on saying "wheelchair bound". The latter, considered archaic language by some of us using wheelchairs (who are perfectly aware that we are not 'bound' to our chairs), undermines the perception of a wheelchair as a viable form of mobility, even a preferable one to some who would do better with one but fight it because of such perceptions.

If you ask me, it all comes back to writing off the potential of people with disabilities -not wanting to put resources into affordable transportation and durable medical equipment. Keeping these perceptions alive is part of that equation. It's so ingrained into some folks that they enter into the experience of using a wheelchair and leave it, even for months, without ever questioning those perceptions, without ever asking the why's. Why isn't there available and affordable transportation for a power chair user to go to the movies, out to dinner in many places? Why do they still sell and rent such heavy manual wheelchairs that they can't be pushed and navigated around in the community?

And it's so sad. Because these folks could be allies. Instead- and in many cases unwittingly- they further the misperception that using a wheelchair means being bound.

UPDATE: Here's another one: Disability Changes the view

What empowerment is not

There's a list over at Disability Prejudice and Civil Rights Watch of what empowerment is not. I can relate to a number of things on it.

It includes:

when you ask [someone] a favor, having done them a favor yourself, being told it would be empowering to do it yourself

On the subject of favors, I've noticed how differently that works now since I've acquired my disability. I can help a friend with a resume or a ride or any number of things, but if I ask a favor back, I am often told that it's my aide's job. Or, as the writer says, my commitment to being independent is questioned. Needing a loaf of bread when you have the flu is no different for any of us. It is not empowering to go to the store sick.

It also includes:

Denying my physical or other disabilities and pretending I can do things I can not do

This happens at times. I'm astonished at the number of people who "get embarrassed" when I ask for help cutting up food, for example. The truth is if I pretend I can do it, I'm likely to wind up shooting my food across the room. (Once I landed a sticky cornish hen against a wall, but that's another story.)

What's behind this, however, is not funny. So often I see people with disabilities pretending to do things they can't. They fall or injure themselves. They deny their hidden disability and wind up with larger life problems. It is not empowering to deny who one is.

Great post. Hope more people comment on it or blog about it.

"He's able bodied...."

I've seen this video before and thought I'd share it here since I'm short on time for blogging. It shows an able bodied man in a world designed for disabled people and is from "Talk" by the UK Disability Rights Commission.

Clip from "Talk" by the Disability Rights Commission (UK)

Not that anyone asked me, but....

Just another reminder this morning when I read about a former policewoman who has a spinal cord injury named Kris Gulden that none of us with disabilities can speak for all of us. It's also a reminder that media coverage of stories like this are often skewed by concentrating on the melodrama surrounding the state of being disabled, rather than our abilities. Sometimes, no matter what you say in an interview, the final result can turn out to be something you shudder at having your name in.

So I'm just going to add a few of my thoughts and reactions here. Kris reports that it doesn't get easier, it just gets different. What I would add is that I found there's an enormous difference between the stages when first adapting to a new disability and the ongoing adaptations that have to be made. The article mentions the increased risk of depression, as if that comes from the state of being disabled. I find that it's a number of other factors, such as society's reaction to the disability, that dampen my mood on any given day.

Which means I agree about some of the attitudinal and architectural/physical barriers she speaks about.

I noticed the article mentions the very high unemployment rate of people with spinal cord injuries. Kris is now teaching high school, a job she apparently found out about through friends at the police force. She also taught three years at the academy.

The article says:

Relatively few Americans with spinal cord injuries are employed, the new survey suggests. It found that 42% have an annual household income of less than $15,000, while that's true for only 13% of the general population. More could work, says Joe Canose of the Reeve Foundation, but they'd lose Medicare coverage if they earned too much.

What's interesting is that this low unemployment rate is solely attributed to losing Medicare coverage. Certainly it's very true that our programs are antiquated and are "work disincentives " to people with disabilities. But it's also true that discrimination still exists with employment and the physical and attitudinal barriers just referred to remain when it comes to getting a job. I'd also like to mention that colleges have a long way to go regarding accessibility and creating good programs for students with disabilities. Many campuses lag behind in these areas. In a world where more, rather than less education, will be key to obtaining and retaining a job, we need to do better.

We need to start seeing what works for individuals that have jobs and are working and put those resources in place for others.

Those are my thoughts. Not unique I'm sure. And not in agreement with everyone either. But - hey- if you're feeling unique this morning, a new survey shows that more people are paralyzed than previously thought.

Anyone else out there have thoughts about what they would have said in an interview?

The question

Hours before the Leno show was taped, at the town hall meeting in L.A., Gary Karp, author and activist, asked President Obama a question:

Q I’m Gary Carr [sic], and Mr. President, thank God for you. (Applause.) Sir, my question regards the true renaissance that’s happening with people with disabilities. They are an emerging population — millions of people with more potential in capacity, more mobile, more educated, more healthy, more empowered technology, but still trapped in very, very old social models that see them in terms of tragedy and charity and need and care. And the modern population of people with disabilities simply does not fit that model.

And as your plan succeeds and you generate these jobs, and as baby boomers retire, we’re going to need every single person of capacity to work that we can. And that must include many, many, many thousands, if not millions, of people with disabilities. (Applause.)

So — I see you nodding your head, so my first question is, do you subscribe to what I’m saying, and next of all, can you talk about how your disability agenda will release this emerging potential that’s currently wasted and untapped?

THE PRESIDENT: Well, you are exactly right, that we need everybody. And every program that we have has to be thinking on the front end, how do we make sure that it is inclusive, and building into it our ability to draw on the capacities of persons with disabilities.

That’s true on the education front, where our recovery package increases funding for children with disabilities. It is true in terms of how Hilda Solis, our Secretary of Labor, will be thinking about our training programs, to make sure that we are not excluding from training for high-tech jobs, the new jobs of the future, persons with disability.

It means enforcing the ADA and fighting back on some court opinions that have tried to narrow in ways that I think are inappropriate the original intent of that legislation.

So one of the things that I think is important is to make sure, as you pointed out, that we don’t see this as an afterthought, a segregated program, but we are infusing every department, every agency, every act that we take with a mindfulness about the importance of persons with disabilities, their skills, their talents, their capacity.

That I think is the approach that my administration is going to take, and we hope that by taking that approach that attitude will infuse state and local governments that are also receiving federal money. Okay? (Applause.)

The president spoke about infusing 'every department, every agency, every act that we take with a mindfulness about the importance of persons with disabilities, their skills, their talents, their capacity.' Hours later, he made the Special Olympics joke.

Negative attitudes toward those with disabilities are so ingrained that many who watched the show tell me they didn't even notice the joke. Of course not. We hear these kinds of jokes every day. People with disabilities are still openly mocked. Many who would recoil with horror at being called bigots still laugh at jokes like this and still make jokes like this.

Raising this topic inevitably brings a knee jerk reaction from some who cry out that we are thin-skinned, overly sensitive. They fail to make the connections between the underlying negative attitudes toward people with disabilities that dehumanize them and the fact that it leads to subhuman treatment. We don't even call crimes against the disabled that. We call it neglect when a person with a disability is found living in circumstances that horrify us and are considered criminal for others. When our institutions fail people with disabilities, whether through abuse or neglect, we as a society fail to address it until the media becomes involved and, even then, take years to address one instance. We pay caregivers for people with disabilities such low wages that many go hungry or dirty. Thank God I don't have to live like that, people say.

No wonder jokes like this abound. It's the tip of the iceberg of what's really going on in our treatment of people with disabilities. In fact, we are so busy as a society laughing at these jokes that we don't even take time to look at solutions to the problem. What if we changed our attitudes and took the issue of employment of people with disabilities seriously? What if we built housing that was accessible and provided transportation that was both affordable and available? What if we stopped making jokes about the Special Olympics and volunteered for it instead? What if we started looking at the potential of people with disabilities rather than warehousing them and excluding them from opportunities?

This would require change. First, people would have to realize that joking about disability is adolescent and dehumanizing. They'd have to believe that people with disabilities are fully human, with the same inherent dignity and worth as - well - the able bodied. Some people don't believe this. Others believe they believe it, but they laugh along. They would deny they believe stereotypes, but they laugh at them all the same. And their children laugh along, perpetuating this behavior.

Perhaps some people are laughing out of embarrassment at the way people with disabilities are treated. Unfortunately, although some of those laughing may simply need to change their attitude and are open to change, others are true bigots. These kinds of jokes just encourage them in their bigotry and reinforce their contempt for people with disabilities.

Wasted and untapped. That's how Gary Karp described the potential of people with disabilities. It's so true. I see it in so many lives. I've cried many tears about it.

But, no, I've never ever found it amusing.

The level of suffering caused by our nation's failure to address the needs of people with disabilities so they can attain their potential is staggering.

I hope people can hear the question being asked over the laughter.

President apologizes for Special Olympics remark on Leno

The President called Tim Shriver of Special Olympics last night from Air Force One to apologize for his inappropriate remark on the Leno show about Special Olympics, which he referred to when speaking about his bowling. Shriver said he hopes this can be a "teachable moment" for the country.

"He expressed his disappointment and he apologized in a way that was very moving. He expressed that he did not intend to humiliate this population," Shriver said Friday on ABC's "Good Morning America." Obama, Shriver said, wants to have some Special Olympic athletes visit the White House to bowl or play basketball.

Still, Shriver said, "I think it's important to see that words hurt and words do matter. And these words that in some respect can be seem as humiliating or a put down to people with special needs do cause pain and they do result in stereotypes."
via Associated Press

Pitt Rehab covered the story this morning with a post and a video.

And Terri writes about how even our friends don't recognize ableism. She also writes about opportunities that exist this month to do things that matter.

UPDATE: Thanks to Media dis&dat, which provided a roundup of disability bloggers' responses

A world where aversion is not normal

I woke up this morning to a number of responses from readers who said the video below bothered them and that what it showed was not "normal".

I think this is a really good opportunity for me to explain that the purpose of these videos is at least two fold. First, it provides an opportunity for people to learn about disability. I am peppered with questions almost every day about my disability. Videos are a good way to show people how things can be done and I try to emphasize those that accentuate what can be done.

But it also provides a chance for those with disabilities to see how others live independently and do things, with a certain level of function. I know for myself that traveling with people with disabilities during the time I played wheelchair tennis was valuable for learning skills and methods. I found out there were things others were doing that I'd been told I couldn't. Many of us living with disabilities have spent long periods of time learning how to do things beyond what conventional PT and OT teaches because those skills fall short of what we needed to live independently.

What is shown in this video is of enormous importance. Jon, myself and others who move around their beds this way are able to live independently without being dependent on others for transfers. Getting in and out of a wheelchair, dressing oneself - these aren't "givens" for quads, and , depending on the level of injury, it takes long hours of practice to do these skills. Some quads can do them, some can't.

But we need to put all of this into perspective, especially when we start to emphasize things like "it's not normal". I suppose all I can say is that it is what it is. When I get up in the morning to work, I'm not concerned about how the way I do things looks. Quite frankly. I'm enormously grateful that I can do what I can independently, as well I should be.

I realize that some people have an aversion to seeing things done differently by people with disabilities. I've run into it when I eat out and use special utensils or someone has to cut up my food. I've run into it when dealing with money highlights my hand and wrist paralysis. I use what function I have to do things independently and I know there will be some staring. I'm used to encountering both curiosity and aversion.

So I'm not surprised by this feedback. When I hear that it's not normal, I smile. A world where people practice inclusion also develops a "new normal", where people with disabilities and the way they do things is accepted, where aversion is not normal either.

Miya of the Quiet Strength

Miya Rodolfo-Sioson, born in the Philippines, was raised in Iowa by her mother with 3 brothers.As the lone survivor of a 1991 school shooting at the University of Iowa, Miya acquired quadriplegia. A one hour documentary entitled Miya of the Quiet Strength talks about how her views on living with a disability and some of the activist work she did for people in Central America and for people in the disability community.

This video shows a small portion of it.



Sadly Miya passed away on December 3, 2008 from cancer and is missed by her family and many friends.

You can purchase the DVD at the above link.

Wheelchair rage

I've heard the words "road rage" over and over again, but rarely have heard anyone refer to wheelchair rage. Yet I see things happen that warrant using the term, anything from people expecting wheelchair users to always defer to walkers and then overreacting when they don't, to incidents where folks bully or even assault those in wheelchairs, possibly causing injury.

This is not to imply, by the way, that all people in wheelchairs require coddling nor is it a suggestion that wheelchair users should go first. But there's a difference between expecting a wheelchair user to wait to be the last one to leave a theater when it's emptying and reasonably accommodating him or her in the flow of traffic. Due to the often segregated treatment of people with disabilities and "special" accommodations (that may not be so "special"), our society still is trying to understand what it looks like to include people with disabilities in the crowd.

Much like road rage, wheelchair rage occurs when someone decides he or she wants to be first or someone else does something that annoys him/her or gets in their way. Due to the common misperception that wheelchairs will slow others down (when actually wheelchairs go faster), wheelchair rage can happen upon the mere sight of a wheelchair. Unfortunately, this can lead to overreactions that create problems and situations.

Some people just have to say something, for example. It can range from verbal wheelchair rage by saying things like "Your wheelchair is in the way" to an endearing remark like "It would be best if you waited until everyone else passes". I've learned over the years that a sense of humor works best, especially in a crowd. Ignoring such remarks also works. I've learned not to get into debates about my civil right to move about like the rest of the world. It's similar to dealing with someone who commits road rage. He or she has decided that wheelchairs are a problem and do not fit his or her agenda, and sees nothing wrong with breaking laws, i.e. like passing illegally and unsafely on the wrong side.

I've also seen people commit physical acts of wheelchair rage in crowds by going into line in front of me, stepping over my footrests and blocking me and holding up their arms to try to prevent me from moving forward. Sometimes, just as with road rage, there isn't much one can do for safety reasons. And since it's often not seen as wheelchair rage, the person doing it is sometimes hailed as a self appointed traffic cop, even the "go to guy" who keeps things from getting out of hand.

Some people just don't believe there is a way for wheelchair users and those on foot to move equally about this world because they have never seen it. Things are changing. The more mobile wheelchair users get, the more places we appear, the more we are able to get out and show up, the more chances people will have to see how smoothly we can all exit together, share aisles in stores, and sit in the same restaurants without much of a fuss.

And then maybe we'll see fewer instances of wheelchair rage. Of course, considering that road rage is out there, it won't disappear. There will always be people who have to be first and will risk anything to do that. But a few less times hearing that I'm in the way would be appreciated.

In defense of wheelchairs

Which, thanks to the media's ongoing negative portrayal of disability, it is necessary to do.

Chris Matthews, during coverage of the inauguration yesterday, said about Vice President Cheney:
"And I can tell you again that metaphor here of the Vice President in that wheelchair - it is a metaphor for the low esteem with which he's held in this country. His numbers are pathetically low."

h/t Society for Disability Studies list serv

***

Laura Hershey, in her blog, noted the number of negative remarks about wheelchair use made yesterday, villainizing, yet again, someone in a wheelchair.

Around the Internet, I’ve seen numerous gleeful references to the image of Cheney in a wheelchair. Several compared him to Dr. Strangelove, the maniacal nuclear scientist in Stanley Kubrick’s film. Others invoke Mr. Potter, that mean old banker in Frank Capra’s It’s a Wonderful Life.

***

Kara Sheridan writes about Tom Brokaw's Dr. Strangelove remark in her blog over at Disaboom.

Is that odd character really the first thing that comes to Brokaw's mind when he sees a wheelchair?! Why not Professor X from X-men? I'd be honored by that comparison! Or better yet...Why not a mention of FDR's adaptations to the Capitol and White House that made Cheney's access possible today?

I'm not so much angered, but more baffled, by Brokaw's statement. I would hope Cheney's actions would be the basis of his mark on history and not the fact he happened to need a wheelchair for a couple of days. On a day filled with such hope and celebration, there's not much that can bring me down. This didn't come close, but it did help remind me that we, as Americans with and without disabilities, still have such a long way to go!

New years resolution number four: Look for the ability in disability

Yesterday I watched my nephew while my sister went to visit my mom who is still in the ICU, recovering from complications from her fall a week ago.

Both of us enjoy spending time together. I'm always amazed by his progress when I see him, as a result of PT and school. He enjoys creative activities, such as music and film and writing . Although he continues to deal with many issues from his cerebral palsy, his abilities shine when I am with him and, as his aunt, those are what I nurture.

This is a far different mindset than one that I often encounter in our society, where the barriers put in front of people with disabilities, some of which could be dealt with if we all had unlimited funds and resources, often are used to justify labeling them as dis-abled. For example, in a not-so-good school system, my nephew would never have received the services he has to help him with his math, which is a tough subject for him. Nor would he have been able to get much of the equipment he needs - a keyboard to write, for example. And, as a result, he would be more dis-abled, less able to use and show the abilities he has.

I remember years ago when I was traveling with another friend in a wheechair and we passed through a town where all of the restaurants had steps. We sat in front of one of the restaurants and a passerby remarked "How do people like that manage?" And, indeed, we appeared to be very dis-abled at that moment, because we had no way to roll inside.

My friend, however, got annoyed and she rolled over to the bottom of the steps, climbed out of her wheelchair and managed her way up the steps, dragging her wheelchair with her. When she got to the door, she turned and asked "What do you want? I'll get carry out" to the amazement of the passerby.

Not everyone can get out of their wheelchair and crawl up steps, nor should they, but many of us with disabilities do the equivalent every day in order to be "able" in a world that challenges our abilities done in a different way. And here's what I've found - most people with disabilities are creative, resourceful and resilient because of that. They are adaptable, versatile and often develop a great sense of humor as a result of their life experiences.

I'm seeing that in my nephew now too. As we were making lunch together, we came to a point where neither of us could grasp something. We looked at each other and laughed.

"Don't worry," I said. "We'll get resourceful."

Abilities abound in people. Let's not "dis" ability in anyone in the new year.

CNN piece on SNL and the Governor Paterson skit

I can take a joke. But only 37% of disabled people are working and I’m afraid that that kind of third-grade humor certainly adds to this atmosphere. Let’s just say I don’t think it helped,” Paterson told the Daily News on Sunday.

Mocking disability- funny NOT

Society's discomfort with the open presence of disability in community, and especially in positions of power, was obvious this weekend when Saturday Night Live broadcast a skit featuring Governor David Paterson in which the cast mocked his blindness. As this post points out, any politician is fair game for policies, etc., but ridiculing his disability by airing a skit portraying him as wandering around a stage and holding a chart upside down amounted to nothing more than mocking his disability.

This kind of mocking comes from a sense of entitlement, where the person mocking disability feels superior.

Worse than the actual mocking, however, is society's refusal to even look at the dynamics of such cruel jokes. A lack of dialogue on this subject spells out a tacit agreement to sanction blatant disrespect to people with disabilities . It maintains the status quo :the able bodied have a right to make fun of disability and those in a condition of disability. This has been going on since biblical times. There is nothing creative or cool or new about it.

If all some see with their eyes or hear with their ears leads to cheap laughs at the sake of another human being's dignity and feelings, if their hands only move to applaud this kind of mockery, I pity them their so-called abilities. They are failing to see or hear or embrace the full humanity of those with disabilities.

Nothing in life is to be feared...

It is only to be understood.

I saw this quote by Marie Curie on google this morning, as I fielded my way through stacks of work. Not sure I would get to blog today, but here I am. And I've been thinking about this quote today as it applies to disability.

Yesterday I ran into a woman who pointed at my drink aide (a drink holder with a long straw attached to the side of my power chair, pictured) and asked "What's that?" This happens from time to time, whether it's a question about equipment or my disability.

I explained what it was.

"Oh," she said. "It looked scary, but not now that I know what it is."

I was reading a disability blog this week over at Disaboom about how a kid with a disability handled questions. (I can't remember which blog-if anyone knows, please let me know in the comments, thanks.) The blogger pointed out that answering questions about a disability can make others more comfortable and alleviate fear, but then criticized people with disabilities who won't answer questions, indicating they shouldn't complain if they aren't accepted, which was going a bit too far I thought.

Because I ran into another guy, who chuckled as he noticed I had cat hair on my pants. "Let me guess," he said. "You have a pet."

I chuckled too and told him about my long haired part Persian cat.

From my point of view, it's so refreshing when I meet a stranger who doesn't talk about the disability.

I mean it can get old, especially if you're out trying to concentrate on other things, to have to deal with disability questions. That's why I'm very reluctant to place an expectation on people with disabilities like that, because it can easily become a question of blaming the person with a disability for others' discomfort. Again. Which has been done too much. And it really underestimates peoples' ability to converse about other topics. Like cats. Or movies. Or - whatever.

On the other hand, for me personally, if I don't find a question too intrusive, I'll generally answer it because I agree that understanding things generally diminishes fear and it only takes a few minutes.

But I'd rather talk about pets, no doubt about it.

The Amazing Wheelchair Race

I'm not a big proponent of those events where they simulate disabilities for a half hour or whatever, for a number of reasons. But this YouTube video was kind of interesting.

It shows a group of able bodied friends using a wheelchair to race through a house to see who can go fastest and/or match the time of the wheelchair user. Every person had a different reaction - one guy didn't finish after falling down, for example, while another was determined to beat the time. Although it's important to keep in mind that the experience of using a wheelchair every day is much different than these one time attempts, I think the video is useful for remembering one thing: when people assume how hard it is to live with a disability, sometimes that assumption is based on the perception of a person new to the experience and equipment.

On the other hand, this video also shows how barriers in the environment are the main reason getting around is tough.

My viability rating varies

Because I live in an able bodied world, I know that I have a viability rating.

I know that because I see people approve of assisted suicide for those with disabilities, who think they are no longer viable. And because I see and hear acquaintances give periodic reports on how I'm doing.

They say things ranging from "You should be as independent as possible" to "You're so independent, but you like it that way". Such comments have led me to a place of Zen consciousness where I make no decisions based on such casual feedback. At times it's like an Olympic spoof, where people hold up signs with scores from 10 to 1. Images like that make me smile on a good day.

Viable is defined by Merriam-Webster as "1. capable of living"; "2. capable of growing or developing"; and "3. a: capable of working, functioning, or developing adequately <viable alternatives> b: capable of existence and development as an independent unit viable state> c (1): having a reasonable chance of succeeding; (2): financially sustainable.

Breaking this all down in terms of disability is a fascinating project. You have your viable states, in which you are adjudged to be capable - or not- of existing and/or developing independently. I clearly don't qualify for that, since getting something to eat by myself involves help, as I told a friend last night who watched me (i.e. gravity) drop salad onto a plate, amazed at "how much better I was". I explained that gravity and Meredith did the work, that one shouldn't assume that meals pop out of my refrigerator ready to eat, cut up and placed on plates, bowls, trays etc. that I can manage. (Had she arrived earlier when the groceries were delivered, she would have seen how useless all of that is to me until someone able bodied gets the food out of the bags, cuts it up, etc. and at that point I suppose I would have been seen as not being in a viable state.)

It is defintion c(1) that is most amusing to me sometimes, that of having a reasonable chance of succeeding. Now that I have an accessible van, when people ask me if I need help getting into my car, I say no rather confidently, knowing I can manage with the help of assistive technology by myself. Yet getting a dollar bill out - or any task requiring dexterity- can take much longer or be impossible for me to succeed at. And this is what's amusing- is that when assistive technology isn't the answer and human help is needed, I get a low viability score. It's not quite fair, is it, that the 2.0 card is held up when they simply haven't invented a wallet that shoots out dollar bills via voice command?

I could go on and on about how being seen as not being financially sustainable is another problem for those of us with disabilities with staggering unemployment statistics or how ironic it is that the word viable, which comes from the French word vie (life), is applied in a way that denigrates the value of our lives .

We need new definitions for the word viable, ones which don't start with the word "capable". Those put a "cap" on how our abilities are defined, limiting us to the norms of the able bodied world. They lead to terms like "handicapable", where we buy into the idea that any human being has to somehow prove his or her worth. That robs people of their dignity, labels them, scores their performance - or lack of - on a playing field that not only isn't level, but may be one they can't even get on.

I'm no less capable at what I do just because I'm physically dependent on someone else to turn a page so ultimately I can complete my work product. Yet to define a person as being in a viable state only when capable of existing and developing as an independent unit - sends quite the opposite message.

Sometimes after an inane conversation with someone about my level of independence as a person with quadriplegia, I find myself barely able to stop giggling. I'm not proud of that, mind you, because I realize that if you don't live with my disability, part of being viable has not included developing a sense of humor about how our society defines independence. Until we all can laugh at that and embrace the diversity that the experiences of the disability community bring to our world, I just have to accept that my viability rating will continue to go up and down in each and every encounter.

Canes in the dollar store

I was in a dollar store for the first time in a very long time this weekend. I'm still fonder of the old five and dimes, possibly because ours had a counter with ice cream sundaes and grilled cheese sandwiches available for the asking.

But dollar stores are fun. Usually the aisles are pretty narrow, but this store had wide aisles so I decided to wander through. And that's when I saw this large open barrel containing at least fifty canes.

Some of them were made of hard plastic while others were wood. Most of them were brown - dark, light, in between. The handles were carved on some, while others had knobs.

I found myself sitting there staring at those canes. Maybe I just couldn't get over the fact that an assistive device of any kind could be bought for a buck. It made me think about how baby boomers will help bring this and that about disability more into the normative experience.

An elderly couple passed by. The wife picked up and fingered a cane. The husband grumbled when she suggested he think about using one. "Don't need one of those."

She put the cane back into the barrel, looked at me and said "Stubborn." She waited until he walked away. (I could see why she was concerned - he was having difficulty navigating the aisle.) Then she picked up a cane, put it in her cart and followed him.

"Oh stop it!" I heard her say a few minutes later. "It's for me, then. You can just borrow it."

Yes, buying a cane at a dollar store is cheaper. But the stigma attached to it, apparently, has retained its value.

And this is why [with]tv matters....

After writing the post below about the movie, I read the post over at the [with]tv blog, urging us to make lemonade out of lemons and encourage Paramount/Dreamworks to invest in [with]tv,which will be a media voice of, by, and for all people with disabilities ... and everyone else. .

Because what's the matter with perceptions can be solved. [with]tv matters. People have been working tirelessly and without pay behind the scenes for months and months now to make it happen, but funding is needed. Those of you who read my blog know that I rarely, if ever, ask for funding for a particular project. The reason I support [with]tv is that the people on its board are not only talented, but approach issues in a way that offers solutions. They are movers and shakers.

From Howard Renensland,the CEO & Founder of [with]tv:

Upon funding, we will overnight become a mainstream, accessible, inclusive media voice for all people with disabilities, for our entire community and for all of our issues. Yes, by all means, urge Paramount/Dreamworks to employ people with disabilities. But at [with]tv, no encouraging will be necessary. We intend to be a media voice of, by, and for all people with disabilities ... and everyone else.

Now, if Paramount/Dreamworks would consider an early investment in [with]tv, and would mentor/partner with us, we would be putting people with disabilities to work around the world overnight.

Once we are broadcasting OUR perspective and offering authentic portraits of our community; good and bad, positive and negative, etc., THEN we will have control of our own public image. That correct image will then begin to supplant terminology and attitudes that now (sadly) represent us in the minds of the majority of the world's citizens, not the least of which are the power brokers in Hollywood. I welcome your comments, support, and investments.

Please take a look at our blog, our radio show, and our website. Investment inquiries are very welcome. Please feel free to e-mail me."

Howard Renensland, CEO & Founder, [with]tv; PWdBC
hrenensland@with-tv.com
www.with-tv.com