Category Archives: essay

The Politics of Mobility

Yesterday a group of nuns in their 80’s and 90’s were turned away from voting in the primary election in Indiana because their photo ID’s were outdated. To some, this story will read this way:

Elderly nuns are affected by the photo ID laws put into place in order to vote.

To me, it’s a story about the politics of mobility. As in: our society assumes that mobility is on a parity for all of us. It most certainly is not. Mobility for some people with disabilities is dependent on specialized equipment, whether it be a van with a lift or a power chair. Some blind people, for example, rely on mass transit, which may not take them, for example, to a motor vehicle agency to get an updated photo ID. Elderly people are also affected if they cannot drive. Poverty is another issue affecting mobility for those who cannot afford a car.

But, although mobility may look different than jumping in a car and going where we want for large numbers of us, we don’t hear about the politics of mobility. Why? Because a lack of mobility makes a group even less likely to be heard. Those who are poor, housebound and who are not out in their communities do not have access to the usual channels of socializing and networking. In fact, the only people they may come into contact with are family members or caregivers. And, for some, no one.

There’s more involved here for people with disabilities than just not having access to transportation or medical equipment, although that’s a big part of the picture. There’s the fact that even getting a piece of medical equipment fixed takes an extraordinarily long period of time for many people. Ordering wheelchair parts can mean a wait of months unlike getting a car fixed. As insurance denials for specialized equipment increase, the numbers of those who are housebound rise. Have you priced an accessible vehicle or wheelchair? The cost is astronomical and without one, getting to where one needs to go is not a given. Taking public transportation is not just limiting because of where the routes go, but because some would need to bring an attendant along, which is also expensive.

This story about the nuns is easier to write about than the politics of mobility. It’s easier to write about these nuns, say they knew about the requirement and didn’t do it, as if it was an inconvenience, and to add that the convent will help them get the proper ID for November, than it is to write about how many seniors or people with disabilities or poor people don’t have the resources to do that. It’s easier to just leave the politics of mobility out of – well – politics.

But as long as the politics of mobility remains unspoken, those who cannot be mobile will remain isolated and unheard.

Copyright 2008 Ruth Harrigan

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Charity my fickle friend: An essay

Right now I know three people who have disabilities – who work full time – who are experiencing difficulties continuing to work because of the high cost of the items we require to work.

It is sad indeed when the system encourages us or forces us to rely on charity despite our attempts to stay independent. It is both demoralizing and dehumanizing, a source of anger and frustration.

Some may think that the charity model of services, which has been around for a long time, serves the needs of the disabled community. I disagree. It is not only an erratic master, but it plays the role of unduly regulating our lives, forcing us to comply with often antiquated rules created for people with disabilities who do not work.

Why are the statistics for unemployment among people with disabilities so high? Lack of services, equipment, job opportunities, attitudes among employers – I could go on and on. But it’s also the charity model of services that’s at fault. For example, accessible transportation services are run in some ways like a yellow school bus. They work for some, but not for others. You can use them if you can plan ahead a number of days, but they don’t work for spontaneous transportation.

This may seem like an unreasonable request to have, but think about this: how do you run a business, for example, if you have to plan your transportation ahead by several days? In a day and age where more of us with disabilities have to be creative to remain employed, it’s a death knell to be so constrained. It works for going to the mall or the movies or “outings”, which is what is often envisioned in the charity model of services. There are also limitations on where you can go, how far you can go, etc. This results in limits on participation in community activities, memberships in organizations as well as social activities.

In a consumer oriented model of services, the services are tailored to the actual needs of the consumer. This bypasses the often stringent rules that don’t fit the consumer’s situation. For example, the personal assistant services I receive can be tailored to my needs because they are consumer based. This allows me to work.

But far too many services for people with disabilities lag behind and are run by the charity model. This includes transportation. The high cost of vehicles is a bar to many. Taxis are not yet accessible in most areas. And although bus lifts and bus routes can be used by some, this is not true for everyone, depending on the level of disability and the need to pay for attendant care to do so.

All of these issues present a complex service delivery problem when addressing the needs of a continuously more diverse disability community. Yet not addressing them can, and will, exacerbate the problem by forcing more people with disabilities out of the work force and back where we began years ago – at the mercy of charity.

Copyright 2008 Ruth Harrigan

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The personal cost of access

This morning FoxNews.com ran as its top video, a story about making city hall accessible in San Francisco and entitled it “Access or Excess”.

Other bloggers have covered this story, but what struck me is how this story fails to give equal play to the fact that those of us with disabilities who need access in our homes face extraordinarily high costs as well – and how these issues are not being addressed in the media although these situations happen every day of the week.

Historically, we are not so far from the days when it was assumed that people with disabilities should remain institutionalized or at home, shut away from the world. This kind of thinking often attaches a label of “entitlement” to a request for accommodations. This is quickly followed by the often exaggerated fear about the cost of accommodations.

And what gets lost in all of this is that the cost of accommodations can be brought down by changing other laws that raise the cost, that have nothing to do with installing a ramp, per se. This story talks about how that may work for a city, but let’s talk about how laws that may work in other instances but don’t work for people with disabilities trying to get accommodations in their homes wreak havoc and result in “excess”. Let me give you an example.

When I needed a ramp, the laws required that I obtain a variance. I was told I could put up a ‘temporary ramp’ to allow myself to get out of my house to work, but that would have to be taken down after I obtained the variance. As an individual, these laws required me to pay for the following:

1. An engineer and architect and a lawyer for the variance hearing to draw up paperwork, plans, blueprints, etc. and to appear at the hearing. There had to be a hearing where neighbors could object to the ramp which they luckily did not. Neighbors and people within a certain area had to be notified about the construction.
2. The cost of materials for two ramps (temporary and permanent), cost of labor for two ramps and lost time from work due to the delay in obtaining not only the variance but when the temporary ramp had to be replaced (when I couldn’t get in/out).

Thousands and thousands of dollars which I had no way to recoup. I had people who helped me out, forcing me to rely on their charity because of the enormous cost although I was working. And the delays because of the procedures involved cost me wages, further compromising my ability to pay.

Now no one would argue that we should do away with variances. The need to get one protects neighbors. However, applying variance law to an individual who is in a wheelchair and trying to get out of his/her house, as you can see, created chaos. There was no streamlined procedure available to reduce the costs, no way to speed up the process so I could avoid having to build two ramps.

So when I see the headline “Access or Excess”, I am more likely to think that it is not the fact that access is required that’s the problem, but that laws and requirements have not been adjusted in conjunction with the Americans with Disabilities Act so that, overall, the cost factor can be kept at a reasonable level. This, to me, is a more pressing issue, since I know that every day someone in a wheelchair sits at their front door needing to get outside without the resources to jump through the hoops our current procedures entail.

Isn’t it a waste of money for individuals to have to spend that much money too? And how does one measure the cost of the delays involved? I’m not sure, even years after I went through all of that, that you can measure it. But I will tell you, it’s excessive.

[If you haven’t already, go on over and read the list of where the money for the project in San Francisco is slated to go (scroll down a bit over there). Perhaps it will become clear that building the ramp itself is not really what’s expensive.]

Copyright 2008 Ruth Harrigan

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Why I Blindfolded a Color Guard

As a teenager I was co-captain of a color guard, which basically meant I marched with a saber and spent most of my time teaching kids how to march while tossing rifles and flags in the air. I remember learning to toss my saber in the air and catch it by the handle, which took a while. I wasn’t the most coordinated person and spent hours in the backyard practicing with a broom, just to avoid ER visits. Of course the blade was blunted, but still.

It was a brand new color guard, so we didn’t do competitions until we were able to execute a whole routine, which was taking months because members kept marching into each other. All it took was one person forgetting their steps for the whole thing to go awry. A few of my friends showed up at outside practices just for the amusement of watching it all. Meanwhile we marched in parades.

Out of frustration with our slow progress, our fearless leader/coach took us to see a competition one weekend to show us how it was was supposed to be done. A color guard marched with complete precision through their routine and I was told to watch the co-captain carefully to see how she and the captain exchanged sabers while marching under the flags. (I couldn’t help but notice that their color guard held the flags up, and their co- captain didn’t have to contend with being conked on the head. Ahem.)

“She’s really good,” I said as I watched the co-captain. Our coach nodded. After the routine I went over to introduce myself. I watched as another member of the color guard handed the co-captain a cane. She was legally blind.

I explained to her that we had a new color guard and she and I had a few laughs about the wrinkles of doing that. Then I asked her for some tips and she told me that, as a legally blind person, she counted everything out – each step, each movement which prevented mistakes. She told me she was used to doing this due to her disability, but that sighted people cheat. She suggested I blindfold the new kids to make sure they didn’t “cheat” but knew the routine.

At the next practice, I told everyone to put blindfolds on and to leave their flag poles and rifles on the sidelines. Parents of the kids were not happy with me, but I was able to see within minutes who knew the routine and who was “fudging it”. I took care of the stragglers by marching them through the routine over and over again until they got it and within a month we were at our first competition.

A few people dropped flagpoles and rifles, but no one was out of step or in the wrong spot. Even though we let them take the blindfolds off.

I thought of this story when I read Steve Kuusisto’s op-ed in the NY Times about David Paterson yesterday and about how legally blind professionals ” are by nature tireless in acquiring information, and we remember virtually every detail of what we read or hear.”

And I thought of it when I read this quote from Andrew Imparato, President and CEO of the American Association of People with Disabilities who talks about “…the power that comes when disabled children and adults claim their identity, reject social constructs of what is normal, and define success on their own terms.”

As for the color guard, it disbanded all too quickly when our fearless leader had to relocate for his job. I didn’t get to keep the saber. Which is rather disappointing, considering I could have duct taped it on and used it as a reacher – a great conversation piece.

Copyright 2008 Ruth Harrigan

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A Lingering Promise

Last night I had a rare opportunity to be heard in a different forum, although I didn’t realize exactly who would hear me when I opted to go. Transportation arrangements were made and I went to a Hillary Clinton campaign appearance. We arrived late and I was in an overflow room with about 200 other folks and was the only visibly disabled person in the room. After the speeches were done, Hillary Clinton walked past the room. I couldn’t glimpse her because everyone was standing up.

Afterwards, the police asked everyone to leave by the back stairs. I had to wait since the motorcade was outside near the ramped entrance. A few moments later, a woman in a wheelchair came by the door and was asked to wait in the overflow room with me while they got the motorcade ready for Clinton’s group. We began a dialogue about mobility issues and found many common grounds. The other woman owned a broken power chair that she bought herself on ebay due to insurance denials. She was in a manual chair that she said she “hated” because she had to be pushed. And her insurer wouldn’t get her a scooter or, it seemed, any other mobility device.

Suddenly the curtain near the door of the room opened. Hillary Clinton looked inside the room, standing there for a moment not saying anything as she looked at both of us. We greeted her and she said she promised she would work hard in Washington to improve things.

There was a silence. I looked at the other woman in the wheelchair and she looked at me. Hillary Clinton nodded at both of us again and said “I promise” and moved on.

The other woman in the wheelchair pulled out her cell phone, showing me pictures she had taken. She said “If she gets elected and fixes these things, I’ll tatoo a picture of her on my arm.”

In the meantime, I gave her some ideas about how to get her broken ebay power chair fixed. She thanked me and we parted ways.

Only the promise lingers.

Copyright 2008 Ruth Harrigan

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Finger Pointing 101

This NY Times article asks the question “If everyone is finger pointing, who’s to blame?” And sometimes that’s a really good question to ask, especially when dealing with advocacy issues.

Are things as bleak as they are portrayed sometimes when someone with a disability needs to resolve an access issue? On the other hand, are business owners the victims of people with disabilities who have huge senses of “entitlement” as some business owners claim?

Neither of these polarized views represents the truth of most situations. And finger pointing at each other in such situations only serves to widen the gap, rather than narrow it through possible conflict resolution. Negotiations aren’t likely to happen when people act as if they’re at war with each other and feel hopeless about reaching any kind of middle ground.

So how do we eliminate finger pointing? Isn’t it true, you may ask, that people with disabilities are rightfully angry that they can’t get inside a business? On the other hand, business owners might ask with equal anger, shouldn’t they be exempt from such requirements if they can’t afford them?

Both parties have to learn to be realistic about certain facts. Some businesses can’t afford certain accommodations and the reasonable requirement of the ADA protects that. Exaggerating the ADA’s requirements is – well- self serving to those who can afford them.

And although one may have a right under the ADA to access, approaching a business owner with anger doesn’t usually lead to negotiations – or a resolution. So although the lack of access makes us angry, we sometimes have to remember that the approach we take to the problem may dictate whether we wind up getting a fast resolution – or having to file a complaint.

It may be true that finger pointing is an understandable reaction sometimes, but I suspect that the main reason it happens is that it feels good. After all, we all want to be one hundred per cent right. The rest of the world certainly seems to conduct its affairs with this outlook, based on this article.

But when working toward change that involves cooperation that you just can’t legislate, such an approach is not only unworkable, but often counterproductive.

Copyright 2008 Ruth Harrigan

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Casting Things Asunder

Lately I’ve had a lot of practice in casting things asunder.

First I had to cast asunder my manual wheelchair, the love of my life, the piece of equipment I most relied upon – an ultralightweight titanium piece of machinery that allowed me mobility by ground and car.

This meant that I cast asunder quite a bit of my mobility. Some would say temporarily, but it hasn’t felt that way over the past months (years*). Things I took for granted, like getting in the car and going somewhere (anywhere) no longer happened without someone else’s help because the mobility devices I needed no longer fit in a (nonaccessible) car. This left me dependent on others to load a manual chair and push me (costing money if I paid) OR adding to the list of things I need help with. Doesn’t happen much.

This meant that I cast asunder most of my social life and plenty of opportunities to participate in organizations, causes, events, etc. Even getting to Mass. Not a small thing for this Catholic.

At some point I cast asunder my willingness to even talk about the entire subject. I wearied of listening to people making suggestions that I already knew I’d tried and wouldn’t work and , although well intentioned, this did not increase my mobility one iota.

What did increase my mobility was buying (financing) a very expensive power chair. What did increase my mobility was paying people to take me places or having friends who cared enough to get me out. What did increase my mobility, although not on an earthly level, was spending more time reading. I’ve made time for that because I need some way to travel.

In the midst of casting asunder all of these things, I suppose the good news is that, underneath, I’ve found myself again. As often happens when our lives change, I find myself feeling like a different person, with different needs, wants and even a different philosophy.

But I’ve cast asunder my need to minimize what this has all done to my life and what I’ve learned it does to the lives of others. I’d appreciate it so much if others would cast aside their need to do that too. I can understand it makes people uncomfortable to listen or to wrap their brains around the idea that the lack of mobility can be one equipment change away.

As I watch the candidates debate, I don’t hear anyone talking about solutions to this issue. I sit here staring at my ballot, trying to discern who should get my vote. And I must say it’s difficult right now to believe that any of those candidates know one iota of what I do on this issue. They may “feel my pain” at a town hall meeting or say they will work toward change (so the signs say), but do they? Will they?

Perhaps in order to vote I have to cast asunder these doubts. I have to remember that such things like lack of mobility are not solved in four years or maybe even eight years. Right now these issues are solved on a person to person basis, through grants and fund raising, hard work, extra hours, and exhaustion. It has little if anything to do with politics or government from what I can see, and more to do with trying to wrest a miracle out of it all, a miracle of grace and happenstance.

One thing I have not cast asunder is my faith. I still believe there is a solution for me and for many others. Where that will come from remains up in the air. I can only pray that someone will listen. One thing I won’t cast asunder is hope.

Copyright 2008 Ruth Harrigan

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