Rebecca Cokley—former executive director of the National Council on Disability, Obama Administration alum and Senior Fellow at the Center for American Progress—is well aware of the disastrous implications of the GOP’s tax bill for disabled folks. She talked to Ms. about how to fight back as well as her own experiences as a disability rights activist.
How are you feeling about the landscape for people with disabilities under the current administration?
I honestly feel like we are better prepared to go into this fight than any generation prior to us. I feel like we’re standing on the shoulders of our elders who really paved the way for the last fifty plus years fighting for health care, fighting for education, fighting for our lives, essentially. And, you know, standing on the shoulders of greatness, all we can do is just continue fighting. And…generationally, I think we’ve seen that this generation is not shying away from the fight. I think we owe a lot of credit to millennials with disabilities, who we typically refer to in our community as the “ADA Generation”…the first generation of Americans with disabilities that grew up at the intersection of Individuals with Disabilities Education Act (IDEA), which gave them education rights and Americans with Disabilities Act (ADA) which gave them employment and public accommodations rights. So, I think generationally, we’re prepared for this fight. I can tell you, it gets frustrating because it feels like once we get done preserving our healthcare we have to fight for it yet again, but…we are the generation we’ve been waiting for.
Young people are doing so much.—
And young women! And young people of color! Women have always been at the forefront of the leadership of the disability rights movement. Traditionally, when you talk to non-disabled people they typically think about white dudes in wheelchairs. Women have always held it down and, I think are continuing to hold it down, and I think there’s a real growing movement of black and brown disabled leaders who have always been part of the fight but who we’re seeing a greater focus on internally within our community and externally.
Given the tax plan, has the Trump Administration made any overtures to the disabled community at all in terms of input or advice—is this something they’re even aware need to be done?
Absolutely not. I mean, I think we’ve seen a low number of appointments to disability focused offices…And the folks that have been appointed have really not been people that have largely come with community-based expertise or with support from the community. We even saw folks in the George H.W. Bush Administration, names that had credibility, names that were known by the community. They might not have been the most progressive of voices, but [they had networks]…so I think, as we see with this tax fight. It really comes through what happens when you have a lack of disabled people at the table making decisions, it’s extremely apparent in this tax bill.
We know there are numerous threats in the GOP Tax Bill. What do you think are the critical takeaways and threats from the tax bill for the disabled community?
…I think, for women, we’re looking at cuts for research on “orphan medical conditions,” like cystic fibrosis, Lou Gehrig’s disease, fibromyalgia, chronic fatigue [syndrome]. Specifically around fibromyalgia and chronic fatigue [syndrome], just as sort of migraines were seen as something say, 30 years ago, that something women made up, 10 years ago people were talking about whether or not those sorts of chronic health conditions really existed or not, because they were more commonly seen in women versus men.
This tax credit has been really critical to get attention and to get progress made on those types of conditions…and that means that people who are dealing with those conditions on a day to day basis don’t get the relief that they need, which will drive down employment, academic enrollment, it’ll drive down spending. Each one of these decisions that they’ve made in the tax bill, it’s like dropping a pebble in the water and you can see the ripple effect. To me, the small business tax credit is delightfully nasty! Just delightfully nasty!
The tax credit is designed to help businesses become accessible for workers and customers with disabilities—putting in ramps, putting in rails, putting in automatic doors. To get rid of that at the same time that you also have HR620 in the House, which would significantly weaken Title III of the ADA around accommodations, it’s like the perfect lob and volley. You’re slamming small businesses doors in the face of Americas with disabilities and saying “we don’t want you here, either as a worker or as a consumer.”
Student loans—people often don’t think about how that will impact the disability community. Only 73 percent of disabled students go on to college, versus 84 percent of non-disabled folks, and a big reason is economic—having the money to be able to go to school. And this is going to make higher education even less accessible for Americans with disabilities.
Do you feel like the conversation in America right now, because there’s so much noise about and from the Trump Administration, do you feel like people are keeping the disabled community in mind? What would you like to see to have that be brought more to the forefront of the conversation?
I think we’re seeing engagement in a way that we haven’t traditionally. I would be remiss if I didn’t give credit to my sister, Mia Ives-Rublee who has been running point an center everything tied to the Women’s March and disabled women. And particularly, the leadership of the Women’s March has been deliberately intentional when it comes to ensuring that disabled women are engaged and at the table and are helping to make leadership decisions. Which, I would never have expected, frankly.
I think it’s been one of those things…I’ve been on the receiving end of text messages from them saying “Hey, we’re planning this thing a couple months out and we want to make sure we have the disability community at the table. What do we need beyond physical access? Do we need to set up a scholarship? How do we make sure there are disabled women at the table for whatever it is we’re looking for?” At the Women’s Conference in Detroit, we saw women on multiple panels, who facilitated a disability panel in Detroit that included local disabled women from the Detroit area.
..I also think that the conversation about Rosa Marie was a huge opportunity and a successful one at that of bringing together folks from the immigrant rights community and folks from the disabled community. I think people are recognizing what they don’t know, which is huge, especially because everything is so rapid response.
To be able to have organizations stop and say “we don’t understand or we don’t know the disability lens to this issue or we aren’t familiar with how disability rights might impact an ICE removal decision and so we need to talk to the disability community”—that hasn’t been the case before. Typically, it’s been one of those situations where our progressive siblings tend to bounce ahead of us and say “oh crap, we didn’t think about the disability community,” or we have to go to them and say “hey guys, y’all screwed up about X, Y, Z and you can’t actually do what you’re doing because you don’t understand the policy implications or the legal implications of what you’re trying to do.”
I think we’ve seen also a lot of solidarity, particularly with the trans community around the attacks on public accommodations. The bathroom fight, Masterpiece Cakes, and HR 620 are really strange bedfellows. We’ve seen tremendous allyship from Sarah McBride over at Human Rights Campaign, who has always been an ally of the disability community, from the time when she was Student Government Association President at American University. Sarah has always looked at the disability lens to an issue or, if she hasn’t she’s always been open to the feedback and saying “no, this is not just the beginning of an attack, it’s just an added piece of the onslaught that all marginalized communities are facing right now when it comes to accessing public accommodations.”
Look at the Muslim Ban as well. You’re talking about isolating the Muslim community, the LGBT community, particularly the trans community, and the disability community. Places are going to be a whole lot less diverse and where are these people going to go?
Yes! Where?
Exactly. I mean, the ADA is 27 years old and I still can’t reach the ATM at the local branch of my bank because it’s in a historic building. You know, to see that, and to know that our communities cross each other and overlap significantly, I think it really is a time for some significant solidarity across communities. Generationally, our communities, haven’t always treated each other like we have the best of intentions when we come to the table. And I think now, because of the fact that kids with disabilities have been in public schools for forty years now, ideally, and ideally integrated into those public schools, we are less likely to be seen as the other and more likely to be seen as a classmate… I think communities feel a protectiveness over each other that we typically haven’t seen.
The tax bill also eliminates the tax credit for adoption. You’ve mentioned that in the dwarfism community, specifically, there’s a 25 percent miscarriage rate. What are the implications of eliminating that tax credit for women who are coping with infertility or who have decided to pursue the adoption to create their family? Who may be looking to adopt disabled children themselves?
It’s huge. With my specific type of dwarfism when both parents have that dwarfism the baby either dies during gestation or shortly after birth 25 percent of the time. So, adoption has always been a huge issue in the dwarfism community and you also see average height parents, because roughly 80 percent of dwarf babies are born to average height parents randomly—though I like to say they hit the genetic lottery! A lot of times those parents we’ve seen an increase in those parents who will also adopt another child with dwarfism so their child doesn’t have to grow up by themselves as the only little person in a family…In the disability community as a whole parenting is sort of the next step of the ADA if we’re looking at it from [an angle of] continuing to make progress; because what do you do once you have access to the home and access to jobs? [Many] people want to talk about having a family. And in 27 states right now there are actual laws on the books that allow states to remove your custodial rights for no other reason that you have a disability at all…
I mean, when my daughter was born the anesthesiologist who was there for my c-section was leaning over my shoulder and saying to my OB “Okay, now that she’s had her second let’s just tie her tubes while we’re down there…” and my husband was like “what are you talking about?” Luckily, I have an OB team that I love and have a great relationship with and [my OB said] “absolutely not—and we’re done here.” So, the adoption tax credit is huge for people with disabilities and for kids with disabilities. For parents who want to adopt a child who might be concerned about the significant financial impact of raising a child with a disability, for them to be able to access that tax credit to help ease some of those expenses is significant. This are so many places where this Tax Bill attacks the vulnerable Starting with the adoption tax credit that attacks disabled kids to the cuts to meals on wheels which attacks disabled seniors. So I think across the spectrum, there’s not a generation of disabled people in this country that will not be impacted by this tax bill if it passes.
Going forward, are there congressional leaders, any leading Republicans, who are reaching out to the disabled community, or welcoming those voices?
Congress can’t ignore the disability community. We’ve seen that with protest not only here in Washington but with protests in Arizona, New Mexico, Colorado, New York state, Illinois, where state rights networks advocates have [driven home] the message “you think you’re safe when you go home to the district, no, we’re here too.” And so, I think people are paying attention, I think the challenge is that the GOP feels like they have to get something done and they’re trying their best to do that. Moments like we saw of Senator Jeff Flake talking to the man on the airplane with ALS are so powerful because you’re using your personal narrative to drive a policy issue and then, on the flip side, you see folks like Representative Cathy McMorris Rogers (R-WA-05) who is the mother of a child with Down’s Syndrome who’s saying “Oh this tax bill isn’t so bad, it’s actually going to be good for disabled people.” And I just think, “Where in here in the help for disabled people because I just don’t see it.”
It hasn’t gotten much coverage, but there are more disabled people starting to run for office. That’s one of the things that’s going to be really powerful and I think part of the reason is that we’ve realized, by and large, this congress doesn’t speak for us, with few exceptions. Senator Bob Casey (D-PA) has done a really good job listening to folks, Representative Hoyer (D-MD-05), a number of members of the minority caucuses have been listening. Senator Patty Murray (D-WA) has been very outspoken on disability rights issues as well. At the same time, just like you see with school or a job until you’re sitting across from someone with a disability, the power dynamic remains the same.
I did an experiment at the Women’s Conference where I said “raise your hand if you’re a cancer survivor” “raise your hand if you have chronic migraines” “raise your hand if you have IBS” “raise your hand if you have a chronic illness” “raise your hand if you’re trying to get a diagnosis because you know there’s something wrong and you don’t know what it is.” I got like three-quarters of the room raising their hands. And then I said now keep your hand up if you consider yourself a member of the disabled community and probably half the room dropped their hands and I said: “That’s our problem.” All of your access to things you access in your daily life and there because disabled Americans fought for your rights and yet you won’t’ raise your hand as part of our community and we need you now more than ever. I think it’s an external issue around the issue of disability, particularly as it’s been in white mainstream feminism. I don’t think the disability community has done as good of a job as we need to be doing outreaching to those communities and I think we can definitely be doing more to demonstrate our solidarity with folks who are part of our community who we need, we need their voices. They might no use the best language, or come to it from a disability rights framework, or they may still be struggling with how to “out” themselves at work but I think now is the time where we really do have to meet people where they are, for everyone’s survival.
