Why Disabled People Are Putting Their Bodies on the Line to Protest Healthcare Cuts

A conversation with Bruce Darling, an organizer with disability justice group ADAPT.

Sarah JaffeJuly 10, 2017

ADAPT was involved with the protest where disabled activists occupied Majority Leader Mitch McConnell's district office during the release of the Senate version of the health care bill. (The Washington Post / Contributor)

Wel­come to Inter­views for Resis­tance. Since elec­tion night 2016, the streets of the Unit­ed States 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 series, we’ll be talk­ing with expe­ri­enced orga­niz­ers, trou­ble­mak­ers and thinkers who have been doing the hard work of fight­ing for a long time. They’ll be shar­ing their insights on what works, what does­n’t, what has changed and what is still the same.

We are willing to put our bodies on the line, because our lives and liberty are.

Bruce Dar­ling: I am Bruce Dar­ling. I am an orga­niz­er with ADAPT. We are a group of dis­abled folks from around the coun­try who work to fight to have dis­abled peo­ple not forced into insti­tu­tions, and we defend free­dom for those who are out in the community. 

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

Bruce: Basi­cal­ly, there was a group of almost 60 of us who made the trek to Wash­ing­ton, D.C. 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 and that they can basi­cal­ly get away with it. We want­ed to send a mes­sage 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 at that point, so folks got out of their wheel­chairs. Every­one got on the ground who could and we were basi­cal­ly dragged out by the Capi­tol Police. 

Sarah: 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 health­care bill would do.

Bruce: Exact­ly. Under this bill, 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 health­care, ser­vices and sup­ports in the com­mu­ni­ty, so more folks will die and go into insti­tu­tions. We want­ed peo­ple to see 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.

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

Bruce: Right, and we want­ed to high­light that by 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. 

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

Bruce: The wheel­chairs that peo­ple need to move around. The ven­ti­la­tors and feed­ing tubes that peo­ple use for breath­ing, eat­ing and nutri­tion. The assis­tance — whether it is home health aides or per­son­al care atten­dants — the 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, the med­ica­tions and med­ical care that we rely on. 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. 

Sarah: Talk a lit­tle bit about the his­to­ry of ADAPT and the his­to­ry of the inde­pen­dent liv­ing move­ment, the orga­niz­ing and activism that made this fund­ing and con­sid­er­a­tion hap­pen in the first place. 

Bruce: 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 and 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 four­teen days ahead of time. I need a way to get to her funer­al.” That kind of basic thing is what we were work­ing 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 U.S. 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 twen­ty-sev­en 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. 

Sarah: In addi­tion to the action in Wash­ing­ton, D.C., 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 health­care bill?

Bruce: 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. 

Sarah: Was Ivan­ka home?

Bruce: 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. 

Sarah: That is disappointing.

Bruce: It real­ly is, because 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. 

Sarah: Con­gress is on its July 4th 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. 

Bruce: We are protest­ing every­where. It is incred­i­ble to watch. We have had protests from Fair­banks, Alas­ka to Orlan­do, Flori­da to Port­land, Maine. Right now, as we speak [Wednes­day, July 5], there is 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 said, 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. 

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

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

Even the lack of dia­logue, how­ev­er, has been use­ful. 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. 

Sarah: How can peo­ple keep up with ADAPT and with you?

Bruce: 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.

Sarah Jaffe is a for­mer staff writer at In These Times and author of Nec­es­sary Trou­ble: Amer­i­cans in Revolt , which Robin D.G. Kel­ley called The most com­pelling social and polit­i­cal por­trait of our age.” You can fol­low her on Twit­ter @sarahljaffe.
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