The Dangers of Judging Self-Determination With One Ruler

I’m always struck by how people use one ruler in life to measure all kinds of things. A ruler works equally well on any object. You can measure a couch or a thimble, a kitchen counter or a doorway.

But using one ruler to measure people is dangerous. It’s particularly harmful when it’s done to judge self-determination in people with disabilities.

Everyone’s situation is different. Disabilities vary, even with the same diagnosis, and support systems vary. Some people have better financial resources. Others have multiple disabilities. What one person does may show a great degree of self determination, while for another person that may not hold true. It’s sad that in our society we fail to recognize the efforts people do make rather than criticize what we don’t understand. It doesn’t just put down the object of our derision - it’s because our society is using one ruler.

It can be hurtful to have this done , whether it’s by a professional, such as a doctor or social worker, or a disabled or able bodied friend or family member. Words hurt, labels stick and self esteem is affected.

What strikes me from talking to pwd and reading their writings is how likely pwd are to have their self-determination judged. Society may deem some of us inspirational - if we meet or exceed their standards. But if we don’t, then the ugly labels start to appear - like self pity or lazy or ‘having a sense of entitlement’. Although it is sometimes true that a pwd needs to be motivated out of a state of inertia, flinging judgments at him or her doesn’t seem to be a great way to do this. And it turns pwd off. One person I talked to got to who suffered from chronic pain and was constantly criticized for not doing more eventually said to professionals “Chart this!” and rolled out of the room.

I’m all for self- determination. It helps all of us get through life. I just think we all need to remember that we’re not measuring objects, but people. And that takes more than one ruler. Our right to judge another human so harshly is yet another issue.

Copyright 2007 Ruth Harrigan

Don’t get “stuck” when you buy disability-related products

“I don’t think I will ever go in it again.”
–Eva McCracken, who campaigned successfully for a wheelchair lift at her local railway station, after it malfunctioned
-via Inclusion News Daily

For anyone wondering how such a thing could happen, I suggest you talk to a person with a disability - or the parent or family member of one.

We’ve all been there. We research the technology or assistive devices we need. We consult with OT’s, PT’s, doctors, other people with disabilities, perhaps architects and others. We find various forms of funding, save our own money, and put in applications to insurance. In the end we receive a product that is supposed to help us do what we need and want to.

And sometimes, even after all of that planning, things go awry. We might get a lemon. The design might be wrong. The product may be sound, but won’t work properly where it’s placed. Or, worse yet, we got bad advice from experts who simply don’t know enough about what they still consider a “niche” area - disability accommodations, access and technology.

After spending hundreds or even thousands of dollars, we may find ourselves owning a product that doesn’t fit our needs despite careful planning. There isn’t a ’second bite’ at the apple with this. A custom made wheelchair that doesn’t fit your needs or a computer that lacks the technology you need although it was designed for you is a disaster to those who need these devices. And, in the case of the example above, a loss of confidence in the reliability of the product purchased can result in its disuse. Getting “stuck” literally on a lift can translate to getting stuck with a product!

So what can we do? First, know your rights as a consumer. Check out the available warranties - and return policy, if any - of the products you order, especially online. If you purchase through a dealer, check out their reputation through your network. Has anyone else bought a product through them? Is their service reasonably fast and consistent? Are they knowledgeable about the products they sell?

The same is true of any experts you may hire or consult. Not all architects, contractors or even medical folks are equal. Those who are “in the know” about what to buy and how to set up and fit products earn a good reputation - and a well deserved one. Word of mouth is especially important here. Networking through organizations can be of help here.

If you’re buying a custom product, make sure that your measurements are given to the dealer accurately. The same is true of the options you choose. Play an active, not passive, role in this process. Products that are custom built for you place an extra burden on you to be careful since you cannot return them if they are delivered to you with the specs you ordered. Mistakes on your part can leave you with a product that might be useless. If, however, a dealer makes an error in ordering with the specs you gave them, then you have rights. This means that examining the product upon delivery is crucial to make sure it’s in accordance with the specs you provided.

Finally, research the product that is recommended to you. Before you buy it, consider its track record for other consumers by doing some reading on the internet and talking to others. You’re not the only person buying the product (although it may feel like it). True, these products have a smaller market but it’s a market nonetheless. The “buzz” is out there if you do enough footwork. This may not be the time to save money, as tempting as it is, on a product that has a shorter warranty. Remember that if the manufacturer lacks enough confidence to give a warranty on the product, chances are you should pay attention to that as a buying point - and put it in the negative column.

None of these suggestions can guarantee that you won’t get “stuck” - but working with experienced people and purchasing reputable products with a good warranty go a long way toward preventing it.

Copyright 2007 Ruth Harrigan

Being a devil’s advocate isn’t as helpful as one might think…

Why not be an advocate instead?

When I talk or write about disability issues, some disagree with my point of view- even some in the disability community. That doesn’t bother me because the world is big enough for various opinions - and would be boring if it wasn’t allowed!

But I am prone to asking people what they are doing about the issues at hand during these discussions. I want to know if they put their “money where their mouth is” - do they spend their time and energy taking action and doing things - or are they just playing devil’s advocate with me?

Being a devil’s advocate, spending one’s time picking at advocates who are trying to change things isn’t very helpful. It’s particularly not helpful when the people doing it simply haven’t done any advocacy and don’t know the background or history of events.

So I ask them questions.

If we’re discussing access issues, I ask them if they report inaccessible places. Do they have the assistive technology they need to be productive? Are they able to afford medical equipment? If so, do they pass on equipment they no longer use or need? If we’re discussing employment issues, I ask if they mentor others with disabilities or take action on a community level if they’ve “made it” - if they are working at a job at equal pay. If we discuss the issue of home health care I ask them if they have family members who help and what they would do without that or when those folks age out? How much do they pay out of pocket for home health care and/or medical equipment? Are they aware of the staggering costs of these things for many- and the obstacles presented by them for many of our community members?

If they tell me they have a well paying job, their family members help them out, they don’t have time to report access issues and those other problems are things they can’t relate to because they’ve never felt comfortable around others with disabilities, I smile. This gives me the impression that they are playing devil’s advocate with me - while I’m trying to advocate.

Don’t get me wrong - I applaud those in our community who have “made it”. I’m happy to see people who are gainfully employed, have what they need to live productive and successful lives and give them credit for their hard work, resourcefulness and all that goes into that. But there is a danger in assuming that everyone else can do it, especially if it leads to playing devil’s advocate with advocates who are dealing with those who can’t do it in the present system.

Do I challenge people? You bet I do. I want to know what they’re doing- not for me and, to some extent, not for themselves - but for each other. Because when we help another disabled person, we’re helping our community. And that’s helping in a way that can’t be measured - and doesn’t have to be. This isn’t a question of spending all day on advocacy - but we don’t have to leave that as a job for others either. We can all do our part.

Copyright 2007 Ruth Harrigan

Things the temporarily disabled say…and do…

One of the things I’ve noticed since using a wheelchair is that folks who are recovering from surgeries and injuries and are temporarily using assistive equipment often approach me. And since I’ve been in a wheelchair quite a while now, I’ve noticed there’s a pattern in what they say. Often it’s something like

“This is a lot harder to do than I thought!” or

“Things really aren’t as accessible as I thought”

or

“I can’t wait for this to be over. I don’t know how you do it”

It’s hard to know how to react to some of these comments. Do I say something along the lines of “You get used to it?” which, by the way, is a large part of why these folks are having a hard time with it. It takes time to learn how to use any kind of mobility device. When I went from a manual wheelchair to a power wheelchair, it took me time to learn how to move it around, what it would do and/or not do. I expected that, however, because I’ve used a myriad of kinds of equipment.

Or should I be more direct and say “It’s not a big deal to me”? I think that’s also part of it. The novelty of entering the world as a temporarily disabled person can often make these folks focus entirely on that aspect of their life, which isn’t true for those of us who are permanently disabled - at least , I don’t think, most of us. I don’t give much thought to getting into my wheelchair when I get out of bed. I don’t think that walking is an option, which is a lot different than where they are coming from.

It’s always a good thing when experiences raise peoples’ awareness of access issues IMHO. So when someone says something along those lines, I’m happy to agree that we need to keep working toward more access along with acknowledging the progress we’ve already made.

Sometimes I’ve found myself just smiling and saying “Hope you feel better”. Because I’m not sure there’s any way to explain to people that their experience is a very different one, although it does converge with mine in many ways. I think of them like an exchange student who is temporarily visiting. They enter the disabled experience and then exit it at some point, having become more familiar with issues, but knowing they are going home. And while they are there, the actual experience of being in a foreign country looms largest - at least until it becomes more familiar.

At my church a woman who was on crutches for six weeks spoke to me every week during that experience. When she got off the crutches, that stopped. I said hi a few times and she looked the other way. I found that to be very sad. But it’s not the first time it’s happened. For her, the trip was over.

On the other hand, I’ve met many more people who have used their experiences to raise their awareness and emerge from it with a permanent shift of consciousness even when their temporary disability ends. Often these are people who ask if I need help or notice when there isn’t access. They share their experience and say “I know a bit about this because I was on crutches…I was in a wheelchair..for six months….for three weeks…”

There is a bond there. Some may argue that it’s a different bond, but I’m not sure that’s a useful debate. Because in the dialogue toward inclusion, I’m all for letting everyone on the bus for the trip.

Copyright 2007 Ruth Harrigan

Seeing advocacy as a tool

Recently I received an email from a reader with a disability who said she discussed one of my posts about advocacy with a friend of hers at lunch. Her friend told her that it wasn’t necessary to self advocate because everyone around the person with a disability “meant well”. When the reader pointed out a recent situation where she had to negotiate, her friend laughed at her and said that she was being silly.

The reader told me she was upset by her friend’s comments. She wrote “I feel like my friend slapped me down for trying to empower myself. This validated my gut feeling that I do need to advocate for myself. Although I don’t question that many people mean well, that isn’t the same thing as knowing what I need and it’s patronizing.”

Some people assume, like this reader’s friend, that it isn’t necessary to advocate for yourself if you have a disability. Because of this erroneous assumption, they see attempts to discuss advocacy as unnecessary. They don’t see advocacy as a tool used by both people with disabilities and allies to work toward a better quality of life, whether it be services, access or other issues related to disability.

Perhaps they buy into a “Tiny Tim” view of disability, where the person with a disability is seen as a passive recipient of the charity of others. The problem with this worldview is that it’s not much of a life to sit around waiting for a turkey to be dropped off once a year at the holidays. Nor is it much of a life to let others assume they know what’s best for you.

Over the years advocacy for people with disabilities has resulted in many positive changes, including the consumer oriented personal assistance programs that I and many other people benefit from. Instead of a medical model which limits how you can use the aide hours you’re given, a consumer model encourages recipients to use the services to volunteer and work if possible and is more flexible.

These kinds of programs wouldn’t exist if disability advocates and activists did not envision and work toward them. Advocacy is a necessary tool to set forth the needs and concerns of our community. And, like any tool, knowing when to use it - and how and to what degree- is important.

As one of my friends says “You don’t use a hammer to open an envelope or a letter opener to bang a nail in.”

Copyright 2007 Ruth Harrigan

Never Settle for Crumbs

When I was a kid, my grandparents often took us to feed the birds. They taught us how to toss crumbs at them and even how to lead the birds in different directions by luring them with crumbs. My brothers and I had various adventures with the birds. My older brother was bit by a duck one day, but other than that usually it was as simple as : we tossed the crumbs and the birds ate them.

I’m reminded of these memories when I run into situations where , as a disabled person, I am tossed crumbs. Personally I don’t like being treated like a duck or a goose. When I’m tossed crumbs, I tend to ignore them and go about my business elsewhere. Crumbs offend me because they’re meant for animals, not human beings.

Sometimes I’m tossed crumbs when I ask for things I need that relate to my disability, such as equipment or hands on help. Other times I’m tossed crumbs when it comes to being paid. Most of this is the result of ableism, because as a disabled person I’m not seen as being as valuable or worth as much as an able bodied person. But over the years I’ve learned that ableism doesn’t just come from able bodied people.

The most distressing thing I’ve seen is that sometimes, just sometimes, members of the disability community, a community which has embraced me in so many ways, has members who also occasionally try to toss me crumbs. I consider these folks to be “pseudo” disability community members. For whatever reason they’re out of touch and turn around and use other disabled people. Perhaps it’s not intentional, but the very way they treat disabled people, members of their own community, belies the intent of what they say they are trying to do, which is a dangerous and sad thing. Actions speak louder than words. When those with disabilities who are successful or who gain power turn around and toss crumbs at disabled people who have less, they become part of the problem, instead of part of the solution. This is the saddest thing of all.

Fortunately, I’ve learned never to settle for crumbs. I never get hungry enough that I look around on the ground for crumbs to eat. The lesson for the disability community I’d rather learn from the birds is this: when they fly, they always do so in groups.

copyright 2007 Ruth Harrigan

Beyond bureaucracies: Online self help

“When those subject to bureaucratic control seek to escape the influence of existing bureaucratic apparatus, this is normally possible only by creating an organization of their own which is equally subject to the process of bureaucratization.”
-Max Weber

Many people with disabilities spend countless hours dealing with bureaucractic agencies in order to get their needs met. Whether it’s dealing with the denial of an insurance claim or trying to sort through which agency can help assist with building a ramp, sometimes it can feel as if they’re getting nowhere and their efforts are in vain.

There are times when we need the advice or shared experience of someone else who has gone through the same thing. So what can we do?

I’ve found over the years that there are many other resources as a result of the growing disability community that exists on the internet. Not only can you find like-minded people facing the same issues and concerns, but a wealth of information on places like message boards, forums and blogs. These ’self-help’ areas may not always be as organized as you’d like, but it’s often no worse than mucking through bureaucratic channels.

The question becomes: what’s the best way to use these resources? How can you sort out correct from incorrect information, for example? Surprisingly, that’s easily answered regarding message boards*. Chances are that if a poster makes a suggestion in February, by March someone else might have tried it out and reported back on how things went. Most of these areas have archives which can easily be searched on specific topics and this is a great way to look for information.

As for blogs, there is a comment area which can sometimes contain information more valuable than the original post. So be sure to read through the comments if a post is germane to your information search. Forums may contain email addresses or other contact information you can use to get more information. Sometimes there will be online chat areas or transcripts of particular chats that may offer some help. I once read a transcript of a chat that happened three years before and found the exact information I needed.

I want to insert a disclaimer and add that it’s necessary to exercise common sense when taking the advice found online. The best way to do this is to do some reading and talk to a few people to check out the information you’ve found. But even if the information only serves to guide you in the right direction or toward another site that can help, it’s still a valuable use of your time.

And, in the end, if you get waylaid a few times by getting information that doesn’t pan out, think of it this way : you just can’t escape bureaucracies anywhere.

*This link is for the CareCure forum for spinal cord injuries. For disability specific message boards, blogs and forums, I recommend doing a keyword search on Google for your disability.

Copyright 2007 Ruth Harrigan

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

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

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