by Mariya Strauss
I’ve known Amber Smock since we were both in grad school; since then she has trained her writing and political organizing lasers on a single target: making the world a more
livable place for people with disabilities. In the world of disability rights advocacy, her
star is on the rise, but she continues to embarrass the rest of us in the progressive world
by refusing to slack off. Though she is based in Chicago, it’s easy to imagine her in any
corridor of Congress or state legislature, where she can often be found speaking calmly
into a reporter’s mic with a phalanx of militant disability rights activists raising their fists
behind her. I talked to Amber to get her take on the election results.
MTS: What is your job? And what do you do in the disability rights movement? What
hats do you wear?
AS: I have two responsibilities; one is that I’m the director of advocacy for the center
for independent living in Chicago. It’s called Access Living. I oversee our policy
and organizing efforts. I’m also the national media chair for the grassroots disability
rights group ADAPT, which focuses on the issue of community living for people with
disabilities on Medicaid.
MTS: What are your general feelings about the election results?
AS: [Laughs.] From a disability perspective, the election was a real cliffhanger. I
think that a lot of people with disabilities are relieved that the administration– which
is currently friendly to community-based supports for people with disabilities– people
are relieved that this particular administration’s going to stay in place and will be able to
continue the efforts that we’ve been working on for the last four years.
Previous to the Obama administration, people with disabilities had not been able to
make a lot of headway in terms of enforcing the civil rights that had been won. So the
Bush administration really put a hold on that. But the Obama administration, and the
Department of Justice in particular, really took up the banner of enforcing the civil rights
of people with disabilities. So that was really great. And we were very concerned that
with a Romney administration that progress might have been stalled or rolled back. So
that was a positive.
But the election was also a crisis for a lot of people with disabilities, I think. Because
you were not voting just on the basis of whether you were a Democrat or a Republican,
or a Green, or whatever your political identity is. And what happened was that it felt
like the election was much more about pitting identity groups against each other. So
there was a big feeling that, if you’re a person with a disability, you really should be a
Democrat in this election, because the administration’s policies were pro-disability. And
the Republican Party platform was seen as anti-disability. So there was a lot of pressure
on people with disabilities who identified as Republicans because they were being told
that you were sort of being anti-disability by being a Republican. And that’s really not a
good place for politics to go.
Because the disability movement is not about political parties. It’s about what are the
human rights of people with disabilities. That’s what it’s about. By making one political
party pro-disability and the other political party anti-disability, that really created a crisis
for a lot of people.
So now that the election is over, everybody is looking at the fiscal cliff debate, and
people are wondering whether or not President Obama and Speaker Boehner are going to
touch Medicaid, Medicare and Social Security, all of which are very important to people
with disabilities. So that’s the biggest short term thing that’s going on.
But at the same time, long term over the course of Obama’s next four years in office, I
think we’re going to be seeing a lot of issues coming up that are not disability specific,
but they have something to do with a lot of folks who have disabilities. So for example,
immigration is going to be a big issue. Well, immigration affects a lot of people with
disabilities. And there are questions about whether people with disabilities should
immigrate to America, what to do with undocumented immigrants who have disabilities,
and so forth. So there’s gonna be a disability aspect to some issues, and there’s gonna be
some crossover going on. And I think that’s pretty exciting.
MTS: That is exciting. And that also perfectly connects to my next question!
MTS: How are you looking to mobilize allies as well as your existing base in the next
AS: OK. I think that the disability community is now evaluating what are our national
allies for the next four years. And I think that we will have to continue doing more and
deeper work with labor unions that work with people with disabilities in some form. So
some of the major unions are SEIU –SEIU is the biggest one, but there are other unions
as well. We are going to have to look at partnerships with immigrants’ rights groups.
We are going to have to look closely at whether or not we are effectively working with
groups that have to do with ethnic identity.
So the disability rights movement has a history of being dominated by people who are
white. And I think that to take us to the next step in the disability movement, we have to
develop some leaders that are people of color. So efforts are going forward on that front.
Plus, with the increasing momentum of gay rights in America, that’s also an important
issue for people with disabilities who happen to identify as LGBT. So people with
disabilities will be on the forefront with the gay rights movement in terms of fighting for
marriage equality and other issues that are important to that community.
So I think –it’s really about developing the relationships that we already have with other
groups. If I had a dream about building the best coalition work possible, I’d like to see
us be able to address the needs of people who live on Native American reservations.
And figuring out the bureaucratic tangle that ends up leaving Native Americans with
disabilities vastly underserved. So that would be one ideal where I would really like to
see us build relationships, and see the Obama administration better serve. I’m not totally
sure that it’s going to happen, I don’t think it’s at the top of his agenda, but there’s a really
big need there.
I think that the disability community needs to look at making unexpected allies. Because
of the changes that are happening in health care, we need to understand what health care
companies are doing–or not doing—right. We need to be able to partner with them to
make sure that peer-run, peer-based services are not left out of the mix they are offering
people who need different healthcare options– like community-based services for long-
term care. So I think that looking at those unlikely allies–who are those going to be–is
going to be really powerful over the next four years.
MTS: Can you give an example?
AS: For example–right now, one problem that I see is that some managed-care
companies don’t understand what centers for independent living do. That is, organizations
like mine. So we do things like peer support, we move people with disabilities out of
nursing homes and into the community, we offer independent living skill development,
et cetera. So those things are not necessarily part of the menu of traditional healthcare
So the problem is that in the different states that are taking advantage of managed care,
what’s happening is that states are turning healthcare entirely over to the managed care
systems, and those systems are knocking centers for independent living–those disability-
run, disability-led groups–out of commission. Because they’re getting all the money and
then they won’t pay centers for independent living if they’re not offering services that are
already on the menu. So the idea is that we have to partner with healthcare organizations,
managed care organizations, to help them add community transition and independent
living services to what they offer as the menu of health prevention and health support.
MTS: What is your legislative agenda like for the next four years?
AS: That’s a big question! I’ll offer three examples. One is that we have to iron out
what healthcare is going to be like for people with disabilities. So that means acute
care, it means long term care, it means everything that’s needed to support people with
disabilities living in the community safely and healthfully. So ironing that out–figuring
out what Obamacare’s going to look like and how it’s actually going to work on the local
level– that’s big.
Education of people with disabilities. So education is already a really hot problem
in America. There’s the problem of overuse of standardized testing, and the fact that
different schools are not funded enough, and public schools’ money going to charter
schools, and that sort of thing. Well the big question for the disability community is, how
is money being used to fund the education of kids with disabilities. How are kids with
individualized education plans going to be served better? And how are we going to make
sure that every school in America is actually accessible for kids with disabilities?
Plus we also are seeing a rise of kids with autism and kids with cognitive spectrum
disabilities, and understanding how to serve those students in small settings, with teachers who are actually effective at teaching them life skills, that’s incredibly important. So, pushing for better education funding and better education priorities for students with
disabilities is really important.
And third, during the presidential campaign neither Obama nor Romney would address
the problem of housing for people who are poor, in general. And specifically they
definitely didn’t address what they were going to do to meet the housing needs of
people with disabilities. So we have built a relationship with the US Housing and
Urban Development agency. And the HUD secretary currently has issued some housing
directives concerning accessibility of public housing across the country.
The problem is, we’re going to need to open up more housing opportunities for people
with disabilities that are affordable, accessible and also integrated into the wider
community. Right now, a person with a disability who relies on SSI (Social Security)
as his primary income is priced out of every single housing market in the country. They
cannot rent a one bedroom apartment on SSI alone. So how are we going to bridge that
gap? That’s a question that we hope the Obama administration will answer in the next
four years. So I think housing is gonna come up as a hot issue as well.
MTS: Last question. Have there been any direct actions or other types of mobilizations
recently where you have seen your alliances and coalitions making a difference? A
Let me think about this. Recent direct action–Most of our direct action has to do with
Medicaid issues. And we’ve also seen some states develop strong Medicaid campaigns.
So in Texas there’s a My Medicaid Matters campaign that’s been ramping up. But they’ve
got a really tough situation because they’ve got a governor that is completely rejecting
Obamacare, and all this stuff. So the resistance is building in Texas. [Laughs]
I think we’ll have to see if they win anything. Because Texas has this issue where their
legislature only meets every two years, so it’s about timing for them.
Let me think about other direct actions that are going on–you know I think everybody
has been so concerned with the election, and getting out the vote, making sure that people
with disabilities vote, that–everybody’s kind of taking stock now. So I can’t say too much about that.
I do want to point something out–that people with disabilities are going to be watching
the new set of elected officials in Congress very closely. Because the Democrats held
the Senate, and Republicans held the House, but there’s been some changes in terms of
leadership, and who is in there, and so forth. So we want to see how that’s going to pan
out for people with disabilities.
We know that the new Republican conference chair is Rep. Cathy McMorris Rodgers
(R-Wash.). And Rep. Rodgers is a mother of a child with Down Syndrome. And she
was selected by Romney to represent the campaign at a presidential debate forum held
in Ohio at the end of September. And Patrick Kennedy represented from the Democratic
side. So they basically debated disability issues and what the candidates thought. Well
Cathy McMorris Rodgers sort of had a meltdown. And was really unable to answer what
the Republicans were going to do in terms of fiscal policy and making sure that people
with disabilities on Medicaid were going to have their services protected. And so I’m
very curious to see in her new leadership role, and this time of hopeful taking stock of
Republicans, whether or not she’s actually going to do anything.
So right now I think the disability community is assessing who is going to do what, and
from there assess who we are going to have to go after to have dialogue and possibly do
direct action. You’re quoting me on that.
You know, I was at the Obama election night rally, and I was hanging out with people
with disabilities waiting for the results to come in. And people were so nervous. You
know. They were just wrecks. And then when the results came in and Ohio finally stated
their electoral votes, I mean they were very very happy. So, you know, we’ll see. It’s
pretty clear that the president is making a bunch of big decisions very quickly and it may
or may not be good for us.