Monthly Archives: September 2007

Reason is the advance guard

I take this language from my studies of C.Wright Mills, the sociologist who wrote about the interaction of facts and reason, noting that although facts are important, reason plays a key role in the development of any theories.

And, what, you may ask does this pretentious beginning have to do with disability? First of all, if you’re interested in disability advocacy or activism, I suggest you take a look at C.Wright Mill’s quotes and writings, if for no other reason than he amassed a huge amount of material on the issues of the relations between a. the elite (or as he put it the ‘top clique’), b. those who matter and c. the rest of us. Simply put, his writings help in understanding the dynamics behind our society, the role of power and ways to develop your own skills in key areas.

His exhortation that reason is key strikes me as “right on”. At some point, when we’ve collected the facts and examined the data to any social issue or problem or conflict, we need to recognize that our lead line has to be based upon reason. It does no good to propose theories that aren’t based upon reason.

Yet, as obvious as that seems, it happens. We all read about groups who make demands or take positions that are not based upon reason vis a vis their cause. This is a quick way to be catapulted into the box of ‘Lost causes’, similar to a Lost and Found box.

That’s the opposite of what you’re trying to achieve when advocating. I’ve learned (and a few times the hard way) to pick my way carefully among the things to support, the times to speak up and the issues to address. I’ve watched others do the same and learned by their example.

Are there exceptions? It can be tempting when the facts are so heinous or so emotionally charged to make them. However, taking both a historical and sociological view of the events surrounding issues as well as the most effective way to approach them will often dampen down an initial temptation to act without reason. Sometimes, as hard as this pill may be to swallow, the best thing to do is nothing – at that time. This doesn’t rule out later action.

But there’s always the possibility of undermining your cause more than helping it if you ignore the fact that reason is the advance guard. And that, in the end, does more harm than good.

Copyright 2007 Ruth Harrigan

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When worlds collide: Dealing with service calls

How do you deal with a service call when you have a disability?

This morning I have one scheduled. I know that there’s a chance I’ll get a technician who comes in, does his/her job and leaves. However, there have been times when I am asked to move items and perform other tasks they feel customers should do that, without an able bodied person here, I can’t do.

I think of it as worlds colliding: someone who has no clue how profound my paralysis is enters my home and expects me to do able bodied tasks. It happens because they’re not familiar with my disability or trained in disability awareness. But it’s an unsettling feeling at best and can be downright frustrating at worst.

I’ve decided, however, that the best way to handle it is according to the Tao of Betsy. Betsy was a woman I met at a Catholic retreat who, after watching me explain why I couldn’t help make signs, took me aside and said “Just say no.”

I blinked at her, newly disabled person that I was and said “What?”

“You don’t owe any explanations to anyone. You don’t need to even tell them the disability you have. That’s medical information. Just say no. Period.”

So the rest of that weekend I did exactly that. Since I was on staff at the retreat, the situation popped up fairly frequently. People assumed when they saw my staff label that I could do x, y or z. Just saying no was a very easy way to handle these frequent requests.

I also found that I no longer personalized any of it when I handled the situation that way. And it felt more like my reality- not everyone else’s – was honored. The word ‘no’ aptly describes what I feel, think and experience internally when faced with a physically impossible task as in ” No way.” It’s just nicer to leave off the ‘way’.

So I know if this service person asks me to perform any able bodied tasks that I can’t, I’ll just say “No.” Of course I have no clue what he or she will say when our worlds collide.

But it is only a service call.

Copyright 2007 Ruth Harrigan

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Confined to a wheelchair

One of the first things I noticed after I started using a wheelchair was what a great view I had of good looking asses. Unfortunately, the converse was also true- leading me to be more circumspect about concluding that this vantage point was going to be fulfilling on that level every day.

It did make me rethink how many times some person in a wheelchair had checked out my butt before it wound up in a chair. Not that my butt is confined by any means to a wheelchair. I hate that phrase. “Confined to a wheelchair”. What is that supposed to mean? Is it like house arrest, where you can’t get out of the wheelchair? Is that the disability?

“Sorry, ma’am, but your diagnosis is confined to a wheelchair.”

No it’s not. That’s not even a diagnosis. So when I hear people use that phrase I always think “mobility related impairment”. That’s after I stop chuckling.

There was a time when I used to get angry whenever I heard this phrase but since then I’ve found a lot of other, more important things to get angry about. You’ll be disappointed if you were expecting me to say I no longer get angry when I see disabled people treated less fairly or with less respect than others. That’s simply not true. I have learned to channel that anger in a more constructive way.

I’ve also learned not to fight every battle. There are some groups and some people who simply don’t get that we’re all human beings of equal worth. This is usually what’s behind conflict that arises that results in group action . By the time groups of people are chaining their wheelchairs or demonstrating in the streets, you’d think folks would catch on that disability advocacy is here to stay and that some issues need attending to.

When I read about how the Black Panthers helped out disabled folks during the 504 sit ins years ago, bringing them food and supplies as they occupied the hallways of the Powers That Be, I realized that whenever I write about disability advocacy and activism I owe mention to allies.

Able bodied people who stand by our side as we roll our chairs down streets chanting for the right to live in the community are our allies. Educators who teach our children that all of us deserve respect and dignity are our allies. I could go on and on, because there are many allies. And it is these allies who carry me through every time the world seems to just be full of assholes, prominently displayed in my face.

It can be the guy who sprints from his truck parked in the only handicap spot left just as I pull into the lot, who is cheating by using his grandfather’s handicap placard or the potential employer who doesn’t want to hire a wheelchair user.

These are probably the people who go around saying “confined to a wheelchair”. They have given about as much thought to what it’s like to live from a wheelchair as – well- the pigeon that roosts. They simply don’t care because they think we are the ‘other’ and it can never happen to them.

And when they see people in wheelchairs chained to objects they probably think it doesn’t matter since we’re confined all the time anyway. What they don’t see are the faces of the people in those wheelchairs. They never get that far.

Of course I could simply stare at asses (or assholes) all day since they are at my height. But that’s no way to go through life. There’s so much more to people who stand up than their asses. And the same is true when you don’t see the person in a wheelchair. Or the blind person with a guide dog or using a cane. If all you see is the disability, you’ve missed the entire point.

Because people with disabilities are, after all , just people. And when people confine their views to just seeing the wheelchair, they’re the ones who are confined to a wheelchair, not us.

copyright 2007 Ruth Harrigan


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Power plays in negotiations: Calling their bluff

Ever tried to negotiate a situation with someone who pulls a power play? It happens with ADA situations – and others.

It can look something like this:

your questions are answered with questions, not answers;

the person implies (or explicitly states) that you “don’t understand” the situation, the terms, etc.;

the person stalls with his/her responses;

the person selects which points you raise to answer – and ignores others.

These behaviors ignore the fact that either party in a negotation has a veto vote and can stop negotiating at any time. Power plays really are a bluff in most situations where there are other avenues of redress!

However, in some negotiating situations, power plays are a signal that you don’t want to get involved. For example, if an employer treats you like this, run or roll away quickly! Who wants to work for (or with) someone who treats you as if you’re not all that bright, who doesn’t listen to you, and who raises roadblacks to legitimate concerns you raise?

In other situations, such as dealing with ADA violations, you might want to simply confront the behavior at some point and say to the person: “I’ve noticed during our negotiations that you are (insert power play behavior here). We need to get beyond that if we’re going to settle this.”

As an advocate with over 25 years experience, I’ll warrant that almost every time I’ve done this it’s changed the dynamics. But I’ve also learned from experience when to even bother doing it. There are times when it’s not going to work and you can spot those.

In those situations, folks just come to the table with no intention of negotiating. They’re not “playing” when they pull power plays – they really believe they have all the power and don’t understand that negotiations involve two sides. In these situations, your time is being wasted by their insistence on getting their own way (which is their foregone conclusion) because no middle ground is likely to be achieved. It’s best at that point to either walk away or pursue other avenues of redress, including legal ones.

Copyright 2007 Ruth Harrigan


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Things reporters say – and write – about disability

“The snake you just saw Matt holding isn’t the one that bit him. He no longer owns that one.” via CNN broadcast

Sometimes at the end of a video clip on one of the 24 hour news station, the news announcer stops, looks at the prompter and then, with some resignation, reads inane words like this to the audience – with a straight face. Usually. Once in a while, he or she can’t pull it off and simply chuckles or points out how inane the words are.

I sometimes wonder if there are frustrated writers behind the scenes who have their fun by wording things this way and then watching the newscasters deal with it.

But the news in and of itself creates constant awkward, very human situations. No matter what the story is, there remains not only the potential and risk of getting the facts across wrong but in a biased or offensive way – or both. There’s always the message – and the meta message, as they say.

When I studied communcations at Rutgers as an undergrad, it was a new field and our studies of the media were drawn from other disciplines, like sociology and political science. Although I didn’t enter the communications field, I’m fascinated by the variables that affect our viewing as well as the dissemination of news. And, although the methods used now are much more sophisticated than when I studied the field, how much does the human factor enter into what a reporter, well, reports – or says – about a story?

What comes to mind is one reporter who stood outside a hotel during Hurricane Katrina, watching as bits of the roof – and trees – flew by where he stood, rain soaked in a poncho. Others were holding onto him at times so he wouldn’t join the debris blowing down the road. The situation seemed to create one in which his experience of the hurricane was like a resident’s. But it took one interview with a true victim who lost his home in the aftermath to realize how staged this presentation, no matter how dramatic, was.

The same is true when reporters report on issues about disability. I just read a story from carried on CNN about a possible suspect in a murder who has no arms. He was referred to as the armless man about half a dozen times and I pictured the reporter pondering how to refer to him and finally settling on “the armless man”. Mentioning it once is quite different than having it not only in the headline but as the only description of the suspect. The metamessage? I suppose it may seem to some that I’m picking on the reporter until you stop and consider what the purpose was to constantly refer to him as “the armless man”, choosing a term that not only defines him as “less” but as different and, in a way, representative of his disability.

We are all the sum of our parts and none of us who are disabled are just disabled. I’m not just a quad. I’m also Irish American, a female, and Catholic. I could probably list a dozen other classes I fall into, but the point is that when reporters report only about the disability, that one dimensional view in and of itself is reminiscent of the “staring” phenomenon. Oops – armless. Wow. And it stops there. This is dehumanizing because it implies that all we are is our disability.

Like the reporter standing outside to report on a hurricane, those reporting on stories about disabled people need to be careful to remember that the lenses of their camera or the words they type are about people as well as events. They reflect social mores and their own beliefs.

And they can look as ridiculous as the newscaster telling us that the snake the man is holding is not the one who bit him.

Copyright 2007 Ruth Harrigan


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In the way?

The inside joke I have with friends when I go out with them is the phrase “in the way”. I was just reminded of it this morning as I was reading email and a person with a disability alluded to being “out of the way”.

One of the things I noticed after I began using a wheelchair is that, due to the fact that moving in a wheelchair is different than walking, wheelchair users are perceived as – and treated as – being “in the way”. At first, I was quite upset to realize this and went to great lengths to somehow get out of the way. However, over time, I began to realize that my wheelchair and I were going to take up a certain amount of space in any given time and place and that was a matter of physics, nothing else. In effect there was nothing I could do about it.

And I certainly can’t control other peoples’ perceptions. If they choose to see wheelchair users – or disabled people in general – as in the way, then that’s it. It’s certainly not helpful to inclusion – it’s objectifying and, worse yet, creates an unnecessary hierarchy in terms of implying, somehow, that the disabled person can or should get out of the way.

This scenario , recreated over and over again, appears in many forms. If I’m waiting to use a handicap stall in a ladies’ room and it’s designed in such a way that the only place I can go blocks others, but if I move my place in line isn’t preserved, then the Catch 22 situation of being in the way becomes obvious not only to me but to an astute observer. Narrow and small waiting areas, whether they are in restaurants or doctors’ offices, create the same problem. So does poor placement of furniture that creates narrow spaces, crowding the ingress/egress space to a bare minimum.

So, until more awareness is raised about the physics of all this and the reality that more and more wheelchair users and others with mobility equipment and issues are going to be out and about, the inside joke of “in the way” will continue. Humor is probably a good tool to use – along with , of course, the goal of working toward and supporting Universal Design.

Copyright 2007 Ruth Harrigan


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Taking trunk control for granted

If you’re not familiar with the term “trunk control”, then you probably take it for granted. Trunk control, in the world of spinal cord injury, refers to, among other things, the ability to sit up by yourself and your abdominal strength. In some injuries, there are varying degrees of loss of trunk control.

I’m thinking that more of us with spinal cord injuries should be writing about trunk control. We talk about it amongst ourselves. It’s not like we ask each other “Hey, how’s that trunk control doing?” because it’s pretty constant. But when we are getting to know each other, it’s something we do mention. “Gee, you have pretty good trunk control for a quad” is a good opening line in sci circles.

Although I do have good trunk control for a quad, I have a tendency to lean to one side. This means that if I transfer onto a surface that doesn’t have two arms to hold me up, such as a couch , I have to find a way to position myself so that I can lean against a support. Pews, I’m afraid, are out. They’re made of hard wood and it hurts if you fall.

Since people take trunk control for granted and do things like sitting down quickly on a cushion on the same couch next to me – causing me to do a face plant if I’m caught unawares – or plop down quickly causing a “seesaw” effect on the cushions, some pretty amusing things have happened over the years. Although this kind of thing can help you get to know people quickly at parties, it is socially inappropriate.

However couches don’t come with any kind of straps or lap belts as an accessible option and, in large part, I think it’s because we haven’t talked enough about trunk control – or the variations thereof. So we won’t see Lazyboy advertising any couches or recliners with a Trunk Control Assist option. (Believe me, if you put a recliner in forward when you have poor trunk control the landing is quite dramatic.)

It’s a shame that we all continue to take trunk control for granted. We already have the technology we need to address this. Let’s face it, we all use Trunk Control Assists in our cars all the time.

They’re called seat belts.

Copyright 2007 Ruth Harrigan


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Squeaky wheels don’t always get grease…or air…

.when they’re on wheelchairs. My wheels squeak when they’re low on air and there’s not a thing I can do about it because I can’t operate an air pump.

However, I do get a lot of comments when this happens. And this has led me to the conclusion that there is a learned helplessness reaction on the part of some able bodied folks to situations like this. They say things like:

“Your tires need air.”

“I think your tire pressure is low.”

“You should put air in those tires.”

Uh, thanks. Of course, it seems that this, like many other things, falls to me (who, as a quadriplegic, can’t do it) or to “the only person in the world who can do things”, my aide. This is a phenomenon I see all the time but don’t understand. Of course my aide will put air in my tires when she can, after doing the umpteen number of endless recurring tasks she already does around here. I, on the other hand, don’t think I will be putting air in my tires in the near future. Or ever. So squeaky they shall remain.

Knowing this, I will sometimes venture to suggest that perhaps the person noticing the “squeaky wheels” would man the air pump. I tell them I’m happy to explain how it’s done, how much air pressure the wheels take and how to apply the nozzle. And it takes about three minutes, I add. Then the litany of excuses begin.

“I can’t, I’m afraid of pumps,” one person said. (This must have a name in the DSM IV – inflatophobia perhaps?)

“Sorry, haven’t got the time.”

Well, you get the idea. What’s interesting about this is a. I’m not the one who brings up that my wheels need air. Certainly since I’m sitting on top of them and listening to the squeaking all day I know they need air. And b. I really don’t think people understand that telling a quadriplegic that her tires are low on air is of any use whatsoever. If I could fix ’em I most certainly would!

What this basically shows, however, is that the saying “squeaky wheels get the grease” – or, in this case, air, simply holds no truth when it’s applied to disability. Squeaky wheels do get the usual – advice and suggestions. It also reveals the phenomenon of the learned helplessness of the able bodied observer.

Copyright 2007 Ruth Harrigan

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Disability & Privacy

After speaking with several disabled friends about this issue, I’ve decided to blog about it. It’s rather unspoken that when you have a disability that requires personal care you lose some degree of privacy – because obviously that’s part of the deal. Arranging a schedule with another person to come over to help you out means being flexible and having to “work around” these times. And we all get into a flow with our personal assistants/aides that works for us hopefully.

But what’s interesting – and what I’d like to address in this post – is that the people I talked to reported a loss of privacy that went beyond this. It extended to some of their friends – who just drop by without calling or checking first. It can happen in the middle of a workday, at dinner time, etc. Their reason? “Oh, this was a good time for me to come over. I wasn’t busy.” Well, uh, perhaps we are.

Now, let me make this clear. These aren’t people who are volunteers and scheduled to come over, nor are they folks who are helping out and it’s a better time for them.They’re not my aide or personal care assistant, a doctor,a nurse, wheelchair repair guy, an OT, or even the delivery person bringing groceries. I fit all that into my work schedule. I understand that I have to work around all that as well and somehow meet my deadlines. These are people who just want to “chat”. And I have nothing against that – but , uh, after reading that list perhaps you can understand that working around the current visitors I have is daunting already. Having folks stop in just to chat is, to say the least, not going to work.

I rarely had this happen when I wasn’t disabled but, like the disabled friends I spoke to, I find now that people seem to have an expectation that it’s not only okay to stop by to chat without calling or checking first, but they get bent out of shape if I say I’m busy. I don’t understand why they get their backs up if I have to say to them “Gee, I’m in the middle of working on a project that’s due tomorrow morning. Let’s plan this visit for another time” which I think is a fairly mild and reasonable response.

And my disabled friends told me they have the same thing – doesn’t matter where they work from – office or home, either. (Because I thought perhaps that was a variable.). But – all of them also have a level of disability that requires they have aides and I’m wondering – do people think because we’re “that disabled” that we couldn’t possibly be doing something with our time?

I don’t get it.

Copyright 2007 Ruth Harrigan


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Barriers to inclusion: Pity

I’d like to address one of the barriers to inclusion directly. Pity.

David over at Growing up With a Disability wrote about the role of pity and how it can block inclusion. He wrote in part:

“Pity promotes the view of charity rather than the view of inclusion. Charity for pity divides people into 2 groups, the “haves” and the “have nots”. The premise is that the person who “has” will help the person who “does not have,” because the “haves” feel sorry for the “have nots”, rather than because it is the morally appropriate action to do. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.”

Pity in and of itself, as David also points out, is a negative. Period. I don’t even want to add a noun there. Because we can call pity an emotion or a feeling, but then it makes it sound as if we can’t do anything to change it. I don’t believe that. I think pity is a reaction that is learned and, in some cases, almost programmed in as a reaction to disability in our society. It’s not a helpful reaction because it creates walls.

Why? Simply put, while a person is experiencing pity, it blocks not only a dialogue, as David points out, but can become the reason for objectifying and pushing away a disabled person because being around him/her is seen as “painful” or difficult. However, what is really happening is that the reaction itself (pity) is painful and difficult – and that can be reprogrammed or reset to a different, more positive one.

Today we all hear alot of talk about the worthlessness of self pity. People extol not wasting time feeling sorry for oneself. So why do we continue to waste that energy feeling sorry for someone else – when it does no good? Feeling sorry for me because I can’t get into a non accessible bathroom, for example, does me no good. Asking me what I need is, on the other hand, helpful. The difference between these reactions sometimes is that the person sets aside his/her reaction of pity and chooses a different reaction.

When we consider what inclusion is about we need to look at the attitudes and behaviors that are blocking a dialogue toward it. Let’s put pity on the back burner and concentrate on talking about ways we can all adapt to the obstacles that remain as we work toward inclusion.

copyright 2007 Ruth Harrigan


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