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

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