The Senate has finished its deliberations and approved a health care reform bill. Our legislators will be trying to merge the Senate and House bills, and I for one am anxious -- for many reasons, but today specifically as a disabled person.
The people making decisions that will affect our day-to-day lives are people like Missouri's junior Democratic senator, Claire McCaskill -- who said a few months ago that we could save the government "hundreds of billions of dollars" by not "giving free scooters to Medicare beneficiaries who don't really need them."
This displays an all-too-common hostility and suspicion toward disabled people, as well as an appalling ignorance about what Medicare does -- and this from one of our own public officials.
As a matter of fact, qualifying for a wheelchair of any kind in the United States is an enormously difficult process, even for those of us with private insurance. And the process of qualifying says a lot about how our citizens in general view disabled people.
When it first became clear that my neurological symptoms from suspected MS were here to stay, my doctor prescribed a manual wheelchair. I started with a loaner.
"Keep a list of things you can do now with a wheelchair that you couldn't do before," said the vendor. "It will help with insurance."
Slam-dunk, I said. The chair was utterly life-altering.
I worked. Even with bone-crushing fatigue and balance problems on my worst days, I did not have to call in sick.
I parented. I was actually able to take my boys to the zoo and science museum. And I kept up with them!
I volunteered. For the first time since my wildly fluctuating symptoms started, I staffed a table for a local organization I care about, confident that I could be there at the time specified no matter how I was feeling.
The vendor told me that all of these things would be "icing on the cake."
"Icing?" I asked. "I'm a parent. And the sole wage earner for the family."
"Yes," he said sheepishly. "Icing. Can you tell me how you've used it in your house?"
I found out later why he was asking. For my HMO to cover my wheelchair, I had to qualify under rules first set by Medicare. I had to show that I needed the chair for "activities of daily living."
I had to prove I needed it to help me eat, sleep and use the bathroom. That's about all the federal government -- or my insurance company -- thinks I need to do.
Luckily for me -- I guess -- I sometimes do need a wheelchair for these things, so I qualified. However, many people have equally legitimate needs for a wheelchair if they need to travel more than three feet or so. If they can reliably take a few steps inside their own homes, they don't qualify.
Medicare created this policy, and HMOs followed suit. One small part of an enormous and complex code has real and lasting effects on disabled people's lives. It can keep us unemployed and dependent on others when it's not necessary.
Let me lay it out for you. Here is what this policy, and my own government, are saying:
Disabled people shouldn't work. They certainly can't support their families, but if they do, that was bad planning.
Disabled people shouldn't parent -- or at least not in public. Why did a defective person like you have kids in the first place?
It doesn't matter if disabled people volunteer. You'll just look weird and creepy and be in everybody's way.
All a cripple needs is to get from the 'fridge to the toilet to the bed. It's all you deserve, and it's all you're good for.
In fact, I am not a useless drain on society. I am a mom and a wife, and I work hard for my salary. I am a community member. I am a friend; I'm a neighbor. I deserve to roll on these streets as much as you deserve to walk on them.
And, frankly, I am worried. I see insurance and pharmaceutical companies at the negotiating table. I see business interests and a few consumer groups. But I don't see anyone who appears to understand issues like this. I don't see anyone like me.
Haddayr Copley-Woods, Minneapolis, is a copywriter, blogger and mother.
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