Disability²

I have friends who watch the telethon, not in support, but to monitor the nefariousness. I do not, in fact, I block the channels that carry the telethon from the channel guide on our cable system so that the kids don’t accidentally stumble upon it. (It’s really not that big of deal, I also block ABC family for fear they will stumble on the 700 club, just like I block the naked people channels.)

What I can’t do is stop the fire department and their dammed boots.

We live in an area served by a small volunteer fire department. The fire station is a block and a half down the street. The fire department has responded to my house several times while I have lived here, mostly for small things, like my aide being trapped in my garage when the garage door springs broke. The only time it has been serious is when my daughter Adrianne went into a status seizure lasting 45 minutes (and they kept her oxygenated the whole time, no easy task).

We are fairly well known to the fire department. I want them to know us, partly so that they don’t devalue our lives if they respond in a life threatening emergency, and partly so that if I am incapacitated, the first call they make is not to social services. Two of my kids have sensory and/or anxiety issues when the fire trucks come past our house, so we’ve gone to visit to alleviate their concerns. We go to the open houses and barbecues at the station. They have keys to my house (so they don’t have to bust my door in during an emergency) and contact information for people who can take my kids in an emergency.

Because we go past the fire department almost every day, we see them with the dammed boots. They set up in the middle of our small arterial street, with sandwich boards encouraging donations and the boots. All traffic stops while people drop money into the boots. Every year I have to explain to my kids why we don’t give money, and every year I try to educate our fire department.

The boots are really an ingenious fund raising technique. I don’t object to that technique. I object to the telethon, and as long as the boots are associated with the telethon, I will object to the boots as well.

For 21 hours each Labor Day, the telethon is synonymous with pity. Millions of television viewers hear time and time again about how people with disabilities are doomed to live sad and tragic lives. They hear that without a cure, life is hopeless.

But we poor cripples have a knight in shining armor ready to save us. We have MDA coming to our rescue. A cure is near. Just give a little bit more money and these poor crippled people will be no more.

That is what I object to. Despite having a label of one of those MDA diseases, I certainly don’t live a sad and tragic life. Even though my disability is progressive, my life is far from hopeless. I know my kids, who have non-MDA labels, also don’t have sad and tragic lives, and their lives are far from hopeless.

(Well, okay, sometimes they think they do — you know I do work them like slaves, making them do things like folding laundry, and helping with dishes, raking leaves, and worst of all, cleaning their own rooms — sad, tragic and hopeless their lives may be, I know it’s definitely not their disabilities that creates the sad, tragic, and hopeless moments in their lives.)

While there are people with and without disabilities who choose to live sad and tragic lives, sad and tragic is not ubiquitous with disability.  However the telethon promotes the notion that it is, hence creating a problem for people with all types of disabilities. The telethon is not simply a problem for people with MDA disease labels, but for people with all disabilities. The pity in the telethon does not stop when someone changes the channel, but continues when traffic stops for the boot.

Neil Marcus once said:

Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’… disability is an art. It’s an ingenious way to live.

That is the view of disability I try to instill in my kids. That is how I want them to view me, and how I want them to view themselves.  I’m proud to be a disabled person, and I believe my kids are too, or at least they are practicing to be proud. The telethon is completely antithetical to this social model of disability.  Just as I won’t let my kids stumble upon Pat Robertson’s hate mongering, I will not let my kids stumble upon the equally oppressive telethon.

The problem is that we can’t avoid the dammed boots.

I have worked hard in the last year to help my kids learn about money, and charity. We don’t give money to panhandlers, but we do engage in charity in a variety of ways. We donate clothes, toys and household goods to the Arc. The kids use part of their allowance to give to the monthly mission project at church. We give food to food pantries. We drop off food at a local TV station a couple of times a year when they have canned food drives. I am proud my kids are generous and want to help. They want to put money in the boot, and in their minds the boots are no different than dropping food off at the TV station, plus it is the fire department. They like the fire fighters. They help people.  My kids can’t imagine the fire fighters hurting people.

Last year I got away with having the two younger kids give the firefighters some literature about the problems with the telethon. They had no idea what they were doing. This year that won’t work. We’ve worked so hard at learning about money, and engaging in charity with their money, that they wanted to give money, not paper to the fire fighters.

I don’t want to quell their new found, and appropriate, feelings of charity, nor do I want them to be negative about the fire fighters, but I absolutely will not, can not let them give money. As much as I want my kids to understand the the problems with the telethon and relate them to the boots, they aren’t there yet. My kids are too concrete. In my kids mind, the fire fighters help people — period.

The result is that we are avoiding the fire department, and it pisses me off that the telethon is affecting our lives in this very concrete way. We are going out of our way to not drive past the fire department this year. We are skipping power chair driving practice, and bike riding practice because my kids will see the backed up traffic and flashing lights from the bike path where we practice, and want to investigate.  We are shopping at a different grocery store, taking the long way around to Costco and church, and buying gas at the more expensive station that is the opposite way up the street.

All that for those dammed boots.

V isit www.crip-power.com for more information.