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Cutting Medicaid Threatens the Lives and Liberty of Disabled Americans

Friday, July 07, 2017 By Sarah Jaffe, Truthout | Interview
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Activists with disabilities demonstrate against Trumpcare in Austin, Texas, July 6, 2017. (Photo: Carlos Lowry)Activists with disabilities demonstrate against Trumpcare in Austin, Texas, July 6, 2017. (Photo: Carlos Lowry)

Since election night 2016, the streets of the US have rung with resistance. People all over the country have woken up with the conviction that they must do something to fight inequality in all its forms. But many are wondering what it is they can do. In this ongoing "Interviews for Resistance" series, experienced organizers, troublemakers and thinkers share their insights on what works, what doesn't, what has changed and what is still the same. Today's interview is the 53rd in the series. Click here for the most recent interview before this one.

Today we bring you a conversation with Bruce Darling, an organizer with ADAPT, a group of people with disabilities from around the country that fights the forced institutionalization of disabled people and that defends the freedom of those who are out in the community.

Sarah Jaffe: ADAPT has done a couple of pretty dramatic direct actions around the Republican health care proposal. I understand you were a part of the one that went on in Washington, DC. Can you tell us a little bit about it?

Bruce Darling: Basically, there were almost 60 of us who made the trek to DC with the intent of letting Congress know exactly how bad this bill is and that disabled Americans are not going to just accept it. We felt that, in part, they were targeting Medicaid and the services and supports we need because they think that we are not politically active or weak and they can basically get away with it. We wanted to send a message that that was not the case. We went to Mitch McConnell's office and a group of folks went into the office. A bunch of us could not fit in, and at that point, folks got out of their wheelchairs. Everyone got on the ground who could, and we were basically dragged out by the Capitol Police.

Those photos and videos really got a lot of response. People were saying that the police dragging people out of their wheelchairs is an impressive visual demonstration of what this health care bill would do.

Exactly. For us, what this bill will do is … disabled Americans will die. Others will be forced into institutions and increase this terrible feedback loop, because institutions are more expensive. With capped funds, it will drive more money to the institutions, making less money available for health care and services and supports in the community, so more folks will die and go into institutions. We wanted people to see [that] it is the equivalent of basically being dragged off; the way they saw it on the news, that is actually what happens, even now with the Medicaid program as it is. This will just make it far, far, far worse.

Medicaid is the main way that home health care is funded. That is the main thing that allows people to stay at home and not be put in an institution.

Right, and we wanted to highlight that using language that we thought, or hoped, Republicans would understand. There isn't an asterisk on the Constitution that says "Except disabled Americans." We should have a birthright of life and liberty. Medicaid is the thing that actually pays for and supports our lives and our liberty in the community. So, cutting that is actually cutting the lives and liberty of disabled Americans. It is killing disabled Americans. We really wanted to drive that point home.

Can you talk a little bit more about the specific services that Medicaid funds that would be decimated by this bill?

People don't even think about it. Like, the wheelchairs that people [need] to move around, the ventilators and feeding tubes that people use for breathing and eating, nutrition. The assistance, whether it is home health aides, personal care attendants … it is those people who come into our homes and help us in and out of bed, help us into the bathroom. They do our most personal care. They allow us to live.

Then, on top of that, basically medications and medical care that we rely on. Basically, what they do is they put us in a position where capping those funds and cutting them by, what is it? Three-quarters of a trillion dollars? Those things will be cut at the state level, where they make these decisions. We don't fare so well when that happens. Basically, we see now how people who go without assistance will get secondary conditions and they will either end up in an institution or, in some cases, die. We watch that happen now and we just can't sit back and let that happen to any more of our people.

Talk a little bit about the history of ADAPT and the history of the independent living movement.

ADAPT actually began as -- and I am old enough to have been involved in that fight -- the fight for lifts on buses. It is really interesting when you talk to young people now. They think, "Wow. Lifts on buses. Duh. Of course, they have lifts." But back in the day, back in the 1980s, this was a controversial topic. People argued whether or not there should be lifts on buses and whether disabled people should have access to public transit, asking, "Do we need a special separate system so that we weren't mixed in with the general population?"

What we found was people were being denied the basic things that they needed to live their lives. They had to schedule their transportation well in advance. Certain people were like, "My aunt didn't plan to die 14 days ahead of time. I need a way to get to her funeral." That kind of basic thing is what we were working on back in the mid-1980s. With that achieved, this part of the Americans with Disabilities Act, which was tied to the historic crawl up the steps [of the US Capitol demanding passage of the Americans with Disabilities Act], ADAPT looked at what the next-level issue was, and it was community integration.

We have been fighting that fight now for around 27 years. You would think, honestly, it seems like it should be a no-brainer. Should disabled people be allowed to live in the community? Well, yes, of course. But, we have a lot of people who make money on the fact that we are locked up in institutions, and those people make contributions. It has been a real tough road for us to get that issue through to people.

In addition to the action in DC, there was a sit-in in Sen. Cory Gardner's office in Colorado. What are some other actions that ADAPT have been involved in, leading up to this health care bill?

We were arrested in the Capitol Rotunda, back earlier in the process. This has been named "The Summer of ADAPT" because we have been arrested so many times and in so many different places that our heads are spinning from keeping track of all of the court dates and the fines and the processing. Then, earlier in the year, we did a national action and highlighted these issues in the White House, where we were arrested, as well.

We have taken our message about community integration everywhere we can, to say, "These cuts to Medicaid will just reinforce the system that forces us into institutions and kills us." We even went to Ivanka Trump's house … it was a women-run, women-only national action. Basically, what we did was, while we were being processed out of the White House, the women went first and were processed out and the cops said, "Oh, that is nice. They are being put in vans to be taken back to the hotel." What they didn't know was we were sending them on to Ivanka Trump's house to carry a message there.

Was Ivanka home?

Actually, their son was and that was really actually kind of cool, because I got a bunch of text messages from folks saying, "The son is waving at us!" Everyone was really excited and the response from everyone in the street was very sweet. The energy of that group could only have been because a group of women got together and did this. They did a great job in terms of engaging the child who was very excited to see them. But Ivanka was not willing to talk to them.

That is disappointing.

It really is, because we thought…. The issue that we are fighting is a women's issue, really, when you think about it. Women are the informal caregivers, they are the formal caregivers. By and large, they are the folks who end up in nursing facilities. We are fighting for the rights of women to live free.

Going forward, Congress is on its July 4 recess while we are talking. What are the next steps? What actions do you have coming up? That you can tell us about, of course.

We are protesting everywhere. It is incredible to watch. We have had protests from Fairbanks, Alaska, to Orlando, Florida, to Portland, Maine, and right now, as we speak [on July 5], there are a group of people protesting in Senator Flake's office in Phoenix. It seems like at this point, they are preparing to go to arrest there. The message is: They are not leaving until they get a "no" vote. Which is what happened in Portland, Maine. One of the things people should know is when Senator Collins or her staff said, "No is no," when, they had a no vote, the protesters essentially celebrated their victory and left. Cory Gardner, on the other hand, wouldn't actually engage the disabled protestors, so they ended up staying days in his office and then ended up being arrested. We are willing to put our bodies on the line, because our lives and liberty are.

Other than Susan Collins, have any other senators engaged with you or had any sort of useful dialogue with you?

We have…. No. [laughs] We have reached out. We have tried.

Even the lack of dialogue, however, has been useful. It has allowed us to highlight this issue for people. The fact that we are being arrested -- it is raising the consciousness of folks that this is an attack on Medicaid. It has been lost in the rhetoric about Obamacare and all of that, which is in and of itself atrocious; but then, no one had been talking about these attacks on Medicaid. Word has gotten out to folks that this is cutting the basic supports that disabled Americans need to live, that elderly Americans need. People are pretty appalled by that. Even some ardent Trump voters have said, "That is not what I voted for." We are hopeful about the protests.

How can people keep up with ADAPT and with you?

Follow us on Twitter: We are @NationalADAPT. We have the website www.adapt.org. The hashtag that we are using is #adaptandresist. You can see up-to-the-minute information from folks about protests happening all over the country. This is going to be a busy week for us, so it is a good time to follow. I am @ADAPTerBruce. That is how you can follow me.

Interviews for Resistance is a project of Sarah Jaffe, with assistance from Laura Feuillebois and support from the Nation Institute. It is also available as a podcast on iTunes. Not to be reprinted without permission. 

Copyright, Truthout. May not be reprinted without permission.

Sarah Jaffe

Sarah Jaffe is a reporting fellow at The Nation Institute and has covered labor, social and economic justice and politics for Truthout, The Atlantic, The Guardian, In These Times and many other publications. She is the cohost of Belabored, a labor podcast hosted by Dissent magazine, and the author of Necessary Trouble: Americans In Revolt (Nation Books, 2016). Follow her on Twitter: @sarahljaffe.

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Cutting Medicaid Threatens the Lives and Liberty of Disabled Americans

Friday, July 07, 2017 By Sarah Jaffe, Truthout | Interview
  • font size decrease font size decrease font size increase font size increase font size
  • Print

 

Activists with disabilities demonstrate against Trumpcare in Austin, Texas, July 6, 2017. (Photo: Carlos Lowry)Activists with disabilities demonstrate against Trumpcare in Austin, Texas, July 6, 2017. (Photo: Carlos Lowry)

Since election night 2016, the streets of the US have rung with resistance. People all over the country have woken up with the conviction that they must do something to fight inequality in all its forms. But many are wondering what it is they can do. In this ongoing "Interviews for Resistance" series, experienced organizers, troublemakers and thinkers share their insights on what works, what doesn't, what has changed and what is still the same. Today's interview is the 53rd in the series. Click here for the most recent interview before this one.

Today we bring you a conversation with Bruce Darling, an organizer with ADAPT, a group of people with disabilities from around the country that fights the forced institutionalization of disabled people and that defends the freedom of those who are out in the community.

Sarah Jaffe: ADAPT has done a couple of pretty dramatic direct actions around the Republican health care proposal. I understand you were a part of the one that went on in Washington, DC. Can you tell us a little bit about it?

Bruce Darling: Basically, there were almost 60 of us who made the trek to DC with the intent of letting Congress know exactly how bad this bill is and that disabled Americans are not going to just accept it. We felt that, in part, they were targeting Medicaid and the services and supports we need because they think that we are not politically active or weak and they can basically get away with it. We wanted to send a message that that was not the case. We went to Mitch McConnell's office and a group of folks went into the office. A bunch of us could not fit in, and at that point, folks got out of their wheelchairs. Everyone got on the ground who could, and we were basically dragged out by the Capitol Police.

Those photos and videos really got a lot of response. People were saying that the police dragging people out of their wheelchairs is an impressive visual demonstration of what this health care bill would do.

Exactly. For us, what this bill will do is … disabled Americans will die. Others will be forced into institutions and increase this terrible feedback loop, because institutions are more expensive. With capped funds, it will drive more money to the institutions, making less money available for health care and services and supports in the community, so more folks will die and go into institutions. We wanted people to see [that] it is the equivalent of basically being dragged off; the way they saw it on the news, that is actually what happens, even now with the Medicaid program as it is. This will just make it far, far, far worse.

Medicaid is the main way that home health care is funded. That is the main thing that allows people to stay at home and not be put in an institution.

Right, and we wanted to highlight that using language that we thought, or hoped, Republicans would understand. There isn't an asterisk on the Constitution that says "Except disabled Americans." We should have a birthright of life and liberty. Medicaid is the thing that actually pays for and supports our lives and our liberty in the community. So, cutting that is actually cutting the lives and liberty of disabled Americans. It is killing disabled Americans. We really wanted to drive that point home.

Can you talk a little bit more about the specific services that Medicaid funds that would be decimated by this bill?

People don't even think about it. Like, the wheelchairs that people [need] to move around, the ventilators and feeding tubes that people use for breathing and eating, nutrition. The assistance, whether it is home health aides, personal care attendants … it is those people who come into our homes and help us in and out of bed, help us into the bathroom. They do our most personal care. They allow us to live.

Then, on top of that, basically medications and medical care that we rely on. Basically, what they do is they put us in a position where capping those funds and cutting them by, what is it? Three-quarters of a trillion dollars? Those things will be cut at the state level, where they make these decisions. We don't fare so well when that happens. Basically, we see now how people who go without assistance will get secondary conditions and they will either end up in an institution or, in some cases, die. We watch that happen now and we just can't sit back and let that happen to any more of our people.

Talk a little bit about the history of ADAPT and the history of the independent living movement.

ADAPT actually began as -- and I am old enough to have been involved in that fight -- the fight for lifts on buses. It is really interesting when you talk to young people now. They think, "Wow. Lifts on buses. Duh. Of course, they have lifts." But back in the day, back in the 1980s, this was a controversial topic. People argued whether or not there should be lifts on buses and whether disabled people should have access to public transit, asking, "Do we need a special separate system so that we weren't mixed in with the general population?"

What we found was people were being denied the basic things that they needed to live their lives. They had to schedule their transportation well in advance. Certain people were like, "My aunt didn't plan to die 14 days ahead of time. I need a way to get to her funeral." That kind of basic thing is what we were working on back in the mid-1980s. With that achieved, this part of the Americans with Disabilities Act, which was tied to the historic crawl up the steps [of the US Capitol demanding passage of the Americans with Disabilities Act], ADAPT looked at what the next-level issue was, and it was community integration.

We have been fighting that fight now for around 27 years. You would think, honestly, it seems like it should be a no-brainer. Should disabled people be allowed to live in the community? Well, yes, of course. But, we have a lot of people who make money on the fact that we are locked up in institutions, and those people make contributions. It has been a real tough road for us to get that issue through to people.

In addition to the action in DC, there was a sit-in in Sen. Cory Gardner's office in Colorado. What are some other actions that ADAPT have been involved in, leading up to this health care bill?

We were arrested in the Capitol Rotunda, back earlier in the process. This has been named "The Summer of ADAPT" because we have been arrested so many times and in so many different places that our heads are spinning from keeping track of all of the court dates and the fines and the processing. Then, earlier in the year, we did a national action and highlighted these issues in the White House, where we were arrested, as well.

We have taken our message about community integration everywhere we can, to say, "These cuts to Medicaid will just reinforce the system that forces us into institutions and kills us." We even went to Ivanka Trump's house … it was a women-run, women-only national action. Basically, what we did was, while we were being processed out of the White House, the women went first and were processed out and the cops said, "Oh, that is nice. They are being put in vans to be taken back to the hotel." What they didn't know was we were sending them on to Ivanka Trump's house to carry a message there.

Was Ivanka home?

Actually, their son was and that was really actually kind of cool, because I got a bunch of text messages from folks saying, "The son is waving at us!" Everyone was really excited and the response from everyone in the street was very sweet. The energy of that group could only have been because a group of women got together and did this. They did a great job in terms of engaging the child who was very excited to see them. But Ivanka was not willing to talk to them.

That is disappointing.

It really is, because we thought…. The issue that we are fighting is a women's issue, really, when you think about it. Women are the informal caregivers, they are the formal caregivers. By and large, they are the folks who end up in nursing facilities. We are fighting for the rights of women to live free.

Going forward, Congress is on its July 4 recess while we are talking. What are the next steps? What actions do you have coming up? That you can tell us about, of course.

We are protesting everywhere. It is incredible to watch. We have had protests from Fairbanks, Alaska, to Orlando, Florida, to Portland, Maine, and right now, as we speak [on July 5], there are a group of people protesting in Senator Flake's office in Phoenix. It seems like at this point, they are preparing to go to arrest there. The message is: They are not leaving until they get a "no" vote. Which is what happened in Portland, Maine. One of the things people should know is when Senator Collins or her staff said, "No is no," when, they had a no vote, the protesters essentially celebrated their victory and left. Cory Gardner, on the other hand, wouldn't actually engage the disabled protestors, so they ended up staying days in his office and then ended up being arrested. We are willing to put our bodies on the line, because our lives and liberty are.

Other than Susan Collins, have any other senators engaged with you or had any sort of useful dialogue with you?

We have…. No. [laughs] We have reached out. We have tried.

Even the lack of dialogue, however, has been useful. It has allowed us to highlight this issue for people. The fact that we are being arrested -- it is raising the consciousness of folks that this is an attack on Medicaid. It has been lost in the rhetoric about Obamacare and all of that, which is in and of itself atrocious; but then, no one had been talking about these attacks on Medicaid. Word has gotten out to folks that this is cutting the basic supports that disabled Americans need to live, that elderly Americans need. People are pretty appalled by that. Even some ardent Trump voters have said, "That is not what I voted for." We are hopeful about the protests.

How can people keep up with ADAPT and with you?

Follow us on Twitter: We are @NationalADAPT. We have the website www.adapt.org. The hashtag that we are using is #adaptandresist. You can see up-to-the-minute information from folks about protests happening all over the country. This is going to be a busy week for us, so it is a good time to follow. I am @ADAPTerBruce. That is how you can follow me.

Interviews for Resistance is a project of Sarah Jaffe, with assistance from Laura Feuillebois and support from the Nation Institute. It is also available as a podcast on iTunes. Not to be reprinted without permission. 

Copyright, Truthout. May not be reprinted without permission.

Sarah Jaffe

Sarah Jaffe is a reporting fellow at The Nation Institute and has covered labor, social and economic justice and politics for Truthout, The Atlantic, The Guardian, In These Times and many other publications. She is the cohost of Belabored, a labor podcast hosted by Dissent magazine, and the author of Necessary Trouble: Americans In Revolt (Nation Books, 2016). Follow her on Twitter: @sarahljaffe.