Monthly Archives: October 2007

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

5 Comments

Filed under essay

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

Leave a comment

Filed under essay

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

4 Comments

Filed under essay

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

Leave a comment

Filed under essay