I was talking earlier this week with an elected official from one of our local municipalities. In the course of a conversation about her concerns about the dangers of power wheelchairs and scooters being driven alongside the road, she mentioned that she also works in a local nursing facility.
In her facility, this is in part dealt with by requiring any residents who have “independent privileges” to have a blaze orange flag flying up from their scooter/power wheelchair. We were on the phone, so I’m sure she didn’t see and I hope she didn’t hear my jaw drop open. While the concept is not new to me (I’ve been working for CDR for over nine years), this language was particularly stomach churning.

Do our people have to jump through hoops in order to have the “privilege” of being “independent” for a couple hours? Yes, we do.
In this case, we have to wear blaze orange flags. In other cases, we might have to prove that we can transfer ourselves or sign papers that we accept the liability if the building catches fire and we’re on the fourth floor and the elevator is inoperable. We might have to agree to meet with a social worker to talk about our feelings in order to get the physical therapy that we actually want (true story, happened to me). You name the hoop, we have to jump through it to get our independent privileges.

And truthfully – we are the lucky ones. The residents that get to go out wearing their blaze orange flags at least get to go out. Some of us at least get to live on the fourth floor. Some of us at least get to have social workers and physical therapists. Not all of us are so lucky as to have our independent privileges.

Many of us are trapped in nursing homes. Trapped in hospitals. Trapped in housing that we can’t get in our out of without being carried. Trapped. No blaze orange flag. No independent privileges. No independence in the land of life, liberty and the pursuit of happiness.
For all those people, the hundreds of thousands forced into nursing homes against their will, the millions of our people that are barely getting by, CDR, ADAPT and other activists do what we do.

When I was first involved with CDR, and went to my first protest, I didn’t quite feel it. I knew why the people that looked like me were angry that the NYS attorney general said New York didn’t have to comply with the Americans with Disabilities Act, but I didn’t feel it. I’m not entirely sure when it went from an anger that I could see and understand in my people, to an anger that I felt and which drove me.

I remember being asked to explain why I am personally willing to be arrested. I know when I gave my answer, I thought about the people that couldn’t be there to be arrested. The people that are trapped. The people that don’t have independent privileges. I thought about the people that aren’t trapped, but live in housing that doesn’t meet their needs. Our people that are treated as though they are stupid, because they happen to have a speech impairment. Our people whose families won’t let them date, much less have sex or get married.

When I continue on in our fight for civil rights, I think about things like the Lane case in Tennessee. In this case, the courts ruled that it was OK to force a paraplegic to crawl up stairs in a courthouse in order to make his appearance before a judge for crimes he may or may not have committed. And when he was not willing to crawl or be carried, the solution was to have him arrested, not to provide an elevator or a courtroom in an accessible location.
Each year we advocate for better community services in the New York State budget. No matter how many times the bureaucrats say that the budget shouldn’t be viewed as a policy document, where you put your money is your policy. Every year, whether the Governor wears elephants or donkeys, sleeps with his own wife or someone else’s, the money goes to the facilities. The places we don’t want to be. The places that trap our people. The place in which we have a right to NOT live.

I’ve met incredible people. People, who at a glance, seem very significantly disabled. But these people do incredible things. My people have gone to more public testimonials, more legislative meetings, more public hearings, and more candidate nights than the average citizen by far. We’ve called our legislators, and written, and emailed, and stopped them in the airport, and in the grocery store. And we have handcuffed ourselves to the Whitehouse fence (during Clinton and Bush presidencies), we’ve interrupted Governors during speeches, we’ve blocked cars with our power wheelchairs, we’ve communicated without the cops understanding us by using sign language. We’ve been arrested. Some of us many times. Some just once. Some never. We’ve done incredible things.
And still people ask me, why do you do the things you do?

We provide services, we go to meetings, we block cars, we chant, we shake hands with mayors, we pay fines, we sing songs, we pose for photo ops with Senators, we protest and get arrested… for the people who can’t. We do this work, we live this passion, for all the people who cannot get their independent privileges.
Regardless of your ability or disability, if you accept that independence is a privilege, you will not have that privilege. We must treat independence of all of our people as a right. This is a right that must be won and must be defended. Those of us in the disability community involved in activism to secure and defend this right for our people that are trapped find great power and truth in the words of Frederick Douglass, “If there is no struggle, there is no progress. Those who profess to favor freedom, and deprecate agitation, are men who want crops without plowing up the ground, they want rain without thunder and lightning.”

We are people who are comfortable with the thunder, lightning and agitation. We are people who will do what we do until all our people have their independent rights.