Monthly Archives: March 2007

Why Our Perspective and Presence as People with Disabilities Matters

Iris Young (1990) delineates five components of oppression and one is:

Establishment of the dominant group’s experience and culture as the norm, which renders invisible the oppressed groups’ perspective

Has someone ever tried to silence you as a person with a disability when you offer your perspective on a situation? Has someone told you that your perspective doesn’t “fit into” the reality of a situation or is just plain wrong?

Unfortunately, because of the oppressive history that people with disabilities have, many times when we speak up, others find what we say to be so outside the “norm” that they dismiss it. This can lead to labeling us as malcontents or, even worse, having our reality denied to our faces.

“That can’t be right,” a person might say to you. “That can’t have happened to you. ____ (fill in the blank) doesn’t treat people like that!”
or
“You’re just upset and overreacting. You’re not seeing this from everyone else’s point of view.”

The truth is, people with disabilities are not seeing things from everyone else’s point of view. We have our own perspective. It varies from individual to individual depending on other factors such as our gender, race, education and poverty level. Our experiences may be outside of the norm but that doesn’t mean that we as people are. We watch the same TV shows, read the same papers, live in the same society as others and adopt many of the same attitudes and rules. But we also carry with us the experience of living with a disability, one that brings a perspective of its own.

So what does this have to do with inclusion? Everything. We need to be realistic about the gap that exists between what able bodied people know and do not know about the experience of living with a disability. It seems paradoxical to urge people to look at differences in experiences, but inclusion is not about people with disabilities just fitting into the “norm”. It’s about allowing those of us with disabilities to fully be ourselves and enrich the community at large by making ourselves a visible presence.

Let me use an example here. My neighbor on the left has a son who is an amputee. Because she has a child with a disability, she has some experiences with some of the issues I face as a person with a disability. My neighbor on the right has no one in their family who has a disability. Although they are very nice people, having me live next door has been more of an adjustment for them. They aren’t familiar with what living with a disability is like and, at times, misunderstand things. One night I overheard them talking to my neighbor on the left, asking her why I could not take my own garbage cans in “on time”. I could hear the “a-ha!” in their voices once they understood more about my disability and realized I depended on outside help to do that. Since then they no longer get angry at me when the cans are out an extra day. It was a matter of seeing things from a certain perspective, one which was unknown to them. This is a small example of how people can mistakenly attribute the wrong motive to outward behavior because they do not understand our perspective – or how we live with a disability.

Just think of how many more behaviors this happens with- especially in a large group of people!

Unless we are willing to recognize that the perspective of people with disabilities has to become visible, we cannot reach inclusion. It is good to remind ourselves that we have much in common with the rest of society, but it is necessary to acknowledge that we have different needs, experiences and spiritual journeys in order to have a fully inclusive community.

Copyright 2007 Ruth Harrigan

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Out of sight: How assumptions we make affect how (or if) we see people with disabilities

There are many people with disabilities that one cannot see who do not acknowledge that they are disabled. And then we have the issue of how we keep people with disabilities out of sight.

As a society we have bought into so many assumptions about disability , including that people with severe disabilities should be out of sight and that looking at them is uncomfortable, that we’ve designed our social structure in a way that does just that.

It most certainly affects how we provide resources for people with disabilities. We don’t provide enough transportation or assistance to people with “severe disabilities” so that they can be in or out in the community. And then we conclude that they cannot be out in the community. So we don’t need to provide resources for them to be out in the community. And on and on.

What it’s about is this: if your disability doesn’t prevent you from getting there by yourself (just like the rest of us able bodied folk), then you’re on one side of the line. If not, you’ve crossed a line of “severe disability”.

How often I hear the phrase “You’re welcome if you can you get yourself there” as if I am an object to be transported and delivered to a destination. I feel like issuing myself a UPS label and asking “Would you like that to be 2 day delivery or overnight?” (I swear one day I’m going to drive myself to a party and arrive like that before a befuddled hostess.)

In reality, it’s often an access issue that involves transportation, not the disability, that determines if a person with a disability is out of sight. Unless you have enough money to pay someone to transport you or are married, related or befriended to an able bodied person who is willing and available to transport you , you can become “out of sight” simply by having no transportation access. Because poverty often accompanies disability (again due to the way we set up resources) lack of access to transportation often accompanies disability. By putting the onus on the person with a disability to get there by himself or herself, we practice exclusion in the most heinous way. We don’t say it’s because of the disability. Yet the outcome is that the person cannot “get himself there”.

By keeping people with disabilities out of sight, society continues to support its expectation that most of the people one sees will be nondisabled. Yet, I assure you, if the proper resources were allocated, that would no longer be the case.

Copyright 2007 Ruth Harrigan

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Futile care law – a death sentence for people with disabilities

I am frightened.

I’m watching how few people are signing this petition for Emilio despite the fact that the Futile Care Law allows a plug to be pulled on a human being over the wishes of his parents and family. It allows a date to be set to put a person with a disability to death and then gives a 10 day time period before it is carried out. It has no safeguards like the usual death penalty for criminals. There is no guarantee to any recourse. Once sentence is pronounced, the clock ticks.

This is even a further encroachment of the rights of those who live with disabilities. This baby’s mother has to sit by and can do nothing under this law to stop her own child from being put to death. It places our lives in the hands of a hospital’s ethics board. It allows that ethics board to determine what is in our best interest – and we are supposed to believe that the cost factor does not weigh into that.

I don’t want a hospital ethics board sentencing me to death one day. I know from living in our society, which worships those who look “perfect” just as it devalues those who are deemed imperfect, that my life is worth less in many peoples’ eyes because I have a disabiliity. There is no doubt in my mind that, in the hands of an ethics board, I could one day be subject to a decision, against the wishes of my loved ones, that my life is futile.

Why should I, or any person with a disability, be subject to a death sentence when we have committed no wrong? And yet I hear no outcry, not even from those who oppose the death sentence in the criminal justice sytem. Is this a different standard because the person who is being put to death is disabled? Are we as a society willing to be that blatant in our disregard and contempt for people with disabilities?

For those who choose to remain silent on this issue or fail to step up yet espouse that they believe in the equal value of human life, I am frightened. For those who are apathetic about this tragedy, I am frightened. For those who believe that this child’s life is worth less than your own, I am frightened.

We as disability advocates have stepped up and put this issue into view. We have done the work to make people aware. We have spoken up for those who cannot speak for themselves. We are telling you that Baby Emilio’s life is not worth less than any other child’s. His life is not “futile” to his mother who is fighting to keep him alive.

We are asking that his life be accorded the same dignity and respect that yours is or your child’s is. Many who are willing to stand by and allow this, I fear , will only understand when a loved one is in the same position.

Copyright 2007 Ruth Harrigan

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Stamping out stereotypes

“Stereotyped views frequently act as self-fulfilling prophecies, forcing the
person with a disability into a role that can then be used to justify the original
treatment.”
-Disabled We Stand, A.T. Sutherland

Last night at the dinner with my Ski for LIght* friends, there were seven tables of guests. Our table consisted of a few guides, five blind people and one quadriplegic. It was a lively table, full of much laughter and activity. Guests at the other tables were able bodied.

About halfway through dinner, I noticed people looking over at our table from the other tables and smiling. This was a switch from the beginning of the night, when most of the guests looked away. Then a few people wandered over from the Sons of Norway table to ask us about our ski trips.

WIthin ten minutes or so, the people at the table closest to my chair began to join one of our conversations. Then a few others moved their chairs so that they were, technically speaking, at our table. By this time, a number of people from our table had joined in the dancing.

By the end of the night, the lines of demarcation that I often encounter at social events seemed to have evaporated. Several of the hosts visited at our table and, as other guests bid their farewells, we met quite a few of them and chatted.

I strongly believe that many stereotypes do act as self-fulfilling prophecies which may force us into certain roles. One of these stereotypes is that people with disabilities are tragic figures. A corollary of that is that we are no fun to be around and not people you would invite to a party.

Nothing is further from the truth. People with disabilities are no different than anyone else. Given the opportunity, others can see that. When we are literally put into close quarters near able bodied people who have not been around us before, it is amazing to watch how their stereotypes about us start to dissolve.

Therein lies the solution, but the difficulty can be that the social exclusion which we still face as people with disabilities does not provide enough opportunities to literally get into the door for many of us so that we can disprove these stereotypes. This is added to by the fact that many of us become socially isolated due to poverty and lack of access to equipment or transportation.

Too few of us have the opportunities and resources to “mingle” , for lack of a better word, out in society in the way that I experienced last night. As a result, erroneous stereotypes still abound. It is not just our loss that this occurs, but the loss of society in general, although most people will never know that truth.

*Ski for Light is an organization that provides opportunities for visually impaired and mobility impaired individuals to ski with the assistance of sighted guides.

Copyright 2007 Ruth Harrigan

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Behind closed doors: When a service does us a disservice

When all is said and done about funding difficulties for personal care assistants, I find that there are still inherent difficulties in the arrangement as it is set up in many areas.

We can all agree that the pay scale is horrendously low for personal care assistants. These folks are being asked to perform a multitude of tasks that vary from day to day. Some of the tasks are distasteful, boring or time consuming. It is, in some respects, a job many people would not want. And nothing I write from here on in changes any of those injustices from the pca’s point of view. Like many other people with disabilities, I can understand that these problems add to high turnover and poor attitude toward the job.

As a person with a disability, however, my perspective is different. I feel that even if we solved some of these problems, the way these services are being delivered is a fundamental part of the problem. I cannot tell you how often I have worked with a personal care assistant (and make no mistake about it – having one is work) and found it a frustrating experience. And this happens even when the pca has demanded – and received- extra compensation from me in order to even show up. The money is not the entire issue. Because of the way society views people with disabilities, we need to revamp the way these services are provided. This is because the current delivery of services is based on outdated beliefs that most people with disabilities are passive recipients of services.

Why do I say this? Because, in my past experience, the majority of pca’s do not treat their job as a job. They do not show up on time. They are not accountable for what they do – or do not do. This means I have to bring in another person to finish or do their work. They call their friends and family, doctors, car mechanics, etc. during the short hours I am allotted while my time is tied up waiting for them to help me. Some of them bring food and try to squeeze in a half hour of eating during my allotted hours.

This litany of rants is not to condemn pca’s – although it may be taken that way. It’s to highlight the fact that, along with adjusting the pay scale for pca’s, we need to take a good hard look at the level of care that is being provided. I certainly support better pay and working conditions for pca’s. I used to work as one for four dollars an hour years ago.

But I also want to see a dialogue started that includes our voices – those of us with disabilities who hire pca’s and know the ins and outs of how to and how not to do the job. Being a pca is a service job that involves providing a service to the consumer. Too many times it is treated as if it is not about the person with a disability at all but a matter of just showing up – whenever – and writing it down on a piece of paper. We need a system where there is accountability for job performance just as there is for other jobs.

Saying these things, of course, puts me out on a limb. Any time any of us speak up about poor service from a pca, we put ourselves at risk of being the problem. We all know the drill. The agency tells us we are being unreasonable and difficult. Social workers tell us we have to make compromises. A checkmark is put next to our name on the agency list and we are told we have to find our own aides. This is what keeps many people with disabilities quiet.

Meanwhile we’re looking across the room at a pca who is on our couch, watching our TV and eating Cheese Doodles. And we remain hungry, unbathed and in the same clothes we were in when she arrived.

Even considering backlash, we need to speak up about what goes on behind closed doors.

Copyright 2007 Ruth Harrigan

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Inflated prices on medical equipment leave us with pictures from catalogs

I hear story after story from people trying to buy medical equipment, ranging from wheelchairs and hospital beds to hearing aids. The terms “denial of claim” and “restricted reimbursement” are usually part of these conversations.

What I don’t hear being discussed is the fact that prices on many of these items are wildly inflated. Bloated prices and high markups have been encouraged rather than discouraged for years in an industry which excuses its high prices due to the fact that it cannot mass produce most of the equipment it sells.

This is a dangerous argument for several reasons and those of us in the disability community need to take heed. First of all, with the advent of new technologies, many of the items we need are getting increasingly expensive. Insurance companies are denying more claims since they don’t want to be saddled with these costs. Our options for lower cost items are decreasing since companies, eager to sell these items, push them to the exclusion of lower cost alternatives. Go to any disability expo and check out the items that vendors are showing. The prices are in the thousands of dollars range now.

Secondly, as our choices for lower priced alternatives narrows, there is no protection on the prices that can be charged for these higher priced items. Even as the numbers of people who need these items increases as baby boomers age, there is no regulatory control to keep the industry honest in terms of numbers. Just as the auto industry is regulated, allowing consumers to see the invoice on vehicles and then compare dealer markup, we need laws in place that make the industry accountable.

The only cost saving measures being taken at this point are by those who have traditionally paid for these items – such as insurance companies, Medicare/Medicaid, and workers’ compensation. They are setting and enforcing policies limiting reimbursement amounts and denying claims to items. This leaves more of us with disabilities in a position where we will be raising money privately or spending our own or our families’ money to purchase some of these items if possible.

It’s time for us to speak up in numbers to question why the inflated costs of this equpment are only being dealt with in this one sided manner – to protect the financial interests of insurers and providers, but not to protect our access to equipment.

Unless we let our legislators know that we need laws protecting us as consumers of medical equipment, wildly inflated prices will continue. And these items, intended to improve our quality of life, will be available to an increasingly small number of people with disabilities.

Copyright 2007 Ruth Harrigan

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The Snow Job

On paper I’m allotted a certain number of hours a week for help from a personal assistant through a program. These hours are used for certain tasks that I’m not able to do because I’m a quadriplegic. Unfortunately, the list of tasks is so long and varied and the pay so low (between 8 and 9 dollars an hour depending on whether the person works on the weekend) that it’s never finished. This leaves my personal assistant in the position of doing what she calls “triage” – like the boy with his finger in the dyke just trying to keep everything from flooding and going under.

This means that I have to figure out ways to get things done on the list that are left over- as well as things that come up that (God forbid!) are not on the list. That often requires that I pay people since my family isn’t available to help. Since I have to budget how much money I can spend to do this, it basically means that I am behind in getting my needs cared for.

So when something happens like a snow storm, I’m really in deep. Literally. That’s when it becomes obvious that there’s a real “snow job” at work here. Think about it. The money I earn goes toward help. My aide does “triage” so I don’t get to pick what I want done.

And I’m still buried under. The frustration from living like this week after week and month after month is not something I can explain. It wears. I triage too. I get my work done, make sure I’m fed and watered.

But everything else is optional. That means my quality of life is seriously affected. If I get an invitation, for example, to go somewhere or travel, I have to consider in the cost of paying someone for the work involved with that. Sometimes I am invited places and the person makes it clear the invitation is conditional on my bringing a personal assistant since I can’t cut up my own food, for example. Since I can’t afford to pay someone to sit next to me just to cut up my dinner, I generally decline.

Quality of life issues do not fall into the same category as basic sustenance. So it’s harder to argue that those of us living in the community should receive assistance with them. But I often wonder how realistic it is to expect people with disabilities to fully participate in society if quality of life issues are not recognized as part of that participation.

Perhaps I should feel guilty expecting to have a full and productive life like everyone else. But I don’t. I’m frustrated by a social services system and a society that sets such a low expectation level of services for those of us with disabilities and then , on top of that, sells us this snow job that it is up to us to fund the difference in finding help.

Unless you are extremely wealthy, paying for these services on an individual basis isn’t practical. The truth is that, whether there’s snow on the ground or not, I’m surrounded by it every day of the year.

Copyright 2007 Ruth Harrigan

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