By Kristin Jones
In July 1978, a group of 19 people with disabilities blocked the intersection of Colfax and Broadway in Denver. They were protesting the fact that they couldn’t ride the city’s buses; there were no ramps or platforms to allow wheelchairs access.
Their protest spurred changes in the way the city’s Regional Transportation District operates. It also inspired similar protests around the country—part of the awakening of a civil rights movement.
Historically, Americans with disabilities have had to live within a system that isn’t set up for them—and face the effects of decisions that they didn’t make for themselves: Where to live; how to get around; what jobs or activities are considered appropriate.
Results of this, predictably, have been inconvenience, pain and trauma. Another has been a strong shared value that has developed within disability communities: The idea that no policy or practice should be put in place that doesn’t involve those people who are most directly affected by it.
Or, more elegantly, as the motto of the Colorado Cross-Disability Coalition (CCDC) puts it: “Nothing about us… without us.”
“It’s a cultural thing in the disability culture,” says Julie Reiskin, the organization’s executive director. “People with disabilities have been so beaten up by well-meaning people who have screwed up our lives… [that] an organization wouldn’t be accepted in our community that wasn’t that way.”
CCDC, a grantee of The Colorado Trust, is a member-based advocacy group, taking direction from people with disabilities all over the state. Fourteen of the 17 staff members of the organization have disabilities; most of its board members do, too.
“There’s never been discussion about, ‘well, funders want this or that,’” says Reiskin. “It’s always, ‘what do people with disabilities want?’”
Outside of the disability community, the concept that decisions should directly involve those most affected by them is gaining currency. This idea is partly what drives The Trust’s Community Partnerships grantmaking effort—finding out what communities want, rather than telling them what they need.
It’s also why we have left the cohort of 18 advocacy organizations that we fund through the Health Equity Advocacy Strategy (HEAS), including CCDC, largely on their own when it comes to establishing their collective priorities and common values, allocating their general operating funds and technical assistance grants, and deciding how to work together.
In turn, the nonprofits in HEAS have adopted the ideal of involving those most directly affected in the policy advocacy work that they do.
Reiskin was diagnosed with multiple sclerosis at age 20 or 21, she says. Even as someone experiencing disability, it took time—and a brush with death—to understand what it meant to be excluded from a life she’d once taken for granted.
“Being a snotty liberal-elite New Englander, my thought was that I’ll go to graduate school, I’ll earn money and not have to get benefits,” says Reiskin. Later, “being in my 20s and knowing everything, I decided that I was going to switch jobs, which was really stupid.”
Switching jobs is something most people in their 20s do without much thought. Why was it stupid?
“I became uninsurable for life,” says Reiskin. She was marked with a pre-existing condition. Even while making good money running a psychotherapy practice and as a partner in a firm that did social-justice work, Reiskin found it impossible to meet her medical expenses and her living costs at the same time.
“I didn’t have enough to eat,” she says. “I couldn’t heat my house.”
As a way to ease her medical costs, Reiskin signed up for an experimental treatment that almost killed her. The treatment—a cocktail that included chemotherapy—was intended to slow the progression of the M.S., and it did. It also landed her in hospice care.
The experience changed her.
“What I knew then was a lot of white privilege. I had a master’s degree; my disability doesn’t affect my speech. Being a white person in a wheelchair who can think and talk fast is privileged on the disability scale,” says Reiskin. “I thought, if it’s not working for me, how is it working for anyone?”
Reiskin quit her job and signed up for Social Security benefits—a decision that deprived her of the opportunity to earn a living wage, but gave her access to Medicaid. It may have saved her life.
“The year before I had Medicaid, I was in the hospital 14 times,” says Reiskin. “Since I’ve had Medicaid I don’t know that I’ve ever been in the hospital again, except for day procedures. And that was 20 years ago.”
Reiskin met her partner at a disability-rights protest in Washington D.C., where they were both arrested. They raised two children together.
And until a 2012 change in Colorado law allowed her to drop her Social Security benefits and “buy in” to Medicaid while still making money, she worked for free.
Holding institutions accountable
Injury or neglect at the hands of governmental, medical and educational institutions is a common thread in the life stories told by many Americans with disabilities. It’s a big part of the reason that CCDC advocates for policy change.
The nonprofit was established to hold institutions accountable to the law. It came into existence shortly after the 1990 passage of the Americans with Disabilities Act (ADA), civil rights legislation that required employers and public agencies to accommodate people with disabilities.
The ADA was a major coup for disability activists. But many of them were skeptical that it would be properly executed or enforced.
“People in Colorado wanted an organization that was going to make sure it became a reality,” says Reiskin.
It was important, too, that the nonprofit complement and not replicate the work of existing organizations. At the time, there were independent living centers like Atlantis, which had initiated the protest at Colfax and Broadway and was primarily focused on physical disabilities, and The Arc, which advocated for people with intellectual and developmental disabilities—but no single unified group.
In its early days, the coalition helped companies that wanted to become ADA-compliant but weren’t sure how. The Trust was one of its first clients. Our 1920s-era building wasn’t set up to allow wheelchair access, and the coalition gave advice on how to make simple changes.
But that program soon petered out, as there was a limited number of institutions that were seeking this kind of help, and CCDC moved into legislative advocacy in the early ‘90s. Its opening act was risky: suing the Colorado General Assembly for its lack of physical accommodations for people with disabilities.
“The founding director lost the ability to be effective at the Capitol because they were so mad at her,” says Reiskin. But it paid off: “We won.”
That’s around the time that Reiskin began to take a leadership role at the organization, and began developing relationships with legislators. The coalition began getting involved in health care legislation and running bills—many of them related to Medicaid, which was then and is now a crucial lifeline for many people with disabilities. Since the early 2000s, it has also worked on advocacy for disabled individuals trying to navigate a complex and sometimes injurious system.
“Nothing about us… without us”
Today, the coalition occupies a clutch of cubicles and offices in a nondescript building off Colorado Boulevard. The day I visited, a large and amiable service dog had to be coaxed to give up a spot in the hallway so that Reiskin could slide by in her wheelchair.
The organization moved here from an office near the Capitol in 2015. No matter: CCDC is still everywhere on Capitol Hill.
Its members show up to obscure meetings like those of the Colorado Disability Funding Committee, a state body set up to administer the sales of specialty license-plate sales for the benefit of people with disabilities. When at a recent meeting, a committee member voiced his uncertainty about dedicating all the proceeds to organizations led by boards in which a majority are people with disabilities, Reiskin’s eyes widened.
Much of her time is spent trying to dismantle the idea that disabled people aren’t up to the task—whatever that task may be. Some of CCDC’s most valuable assets are people who have been written off elsewhere. Board member Jeanie Benfield, for example, and her interpreter Jo Booms.
For years, Benfield sat idle in an adult day program in Pueblo, dismissed by staff as incapable of meaningful activity because the physical symptoms of cerebral palsy made her functionally non-verbal.
“I met Jean my second week in the day program. I went into the building, and I heard a client crying and wailing. I heard staff pounding a fist and screaming,” says Booms, who was working as a caregiver there at the time. “About 20 minutes later, Jean had pushed herself into the room where I was. I said, ‘I’m Jo. You look upset. Can I get you a drink of water?’ She just stared at me.”
Booms says: “Jean told me later she had no clue how to respond to someone being nice.”
Booms has disabilities, too—and also experienced trauma at the hands of people who were supposed to be caring for her. A rare genetic disorder caused her debilitating pain, muscle tightening, a loss of smell, taste and touch, and cognitive loss; the symptoms started when she was a toddler. But “none of the symptoms are visible,” she says. “Early on, my doctors decided that I must be a hypochondriac.” Until the age of 31, when she was properly diagnosed with Genetic Beriberi and treated, says Booms, “I thought it was a personal flaw.”
When the two first met, Benfield had been trying for decades to get the agency charged with her care to allow her to work outside of the day program, with no success. Together, they got connected with CCDC—and with its training programs, which provide education on disability rights and the complexities of overlapping, acronym-heavy systems of care.
The trainings, including an eight-week advocacy course offered for college credit at the University of Denver, offer practical expertise that people with disabilities and caregivers can use in their own specific situations. But they do more than that; they connect people’s individual stories with the larger systemic issues at play, and provide a grounding in policy.
“As experienced, trained advocates, we not only bring the human side but the policy side,” says Jose Torres-Vega, CCDC’s information technology manager, who also works as a non-attorney advocate. “We’ll never come to the table without having sound, reasonable proposals of how to fix the problem.”
For some, the classes and workshops have been nothing short of lifesaving.
“When I got to go to the advocacy classes at DU, it was a chill going down my spine,” says Francesca Maes, a CCDC member who has testified for the legislature and does other political advocacy work. “A lot of time when you have disabilities, you feel ‘less than.’ The advocacy classes were empowering. You feel like you have something to do instead of lying in bed wishing you were dead.”
Maes says: “It gives you something to look forward to, something to be proud of. … We have a sense of purpose, not only for ourselves personally, but for others.”
With the advocacy help, Benfield was able to move into a better group home. She began taking an active role at CCDC, and became a board member in 2015. Benfield speaks with great difficulty, but that barrier has proved to be surmountable, with Booms’ help.
Benfield is working now to call attention to the frequent disconnect between high-level policy decisions that affect intellectual and developmental disabilities services and their impact on clients; to improve transparency; and to incorporate training for caregivers by people with disabilities.
“I love it,” she said in a phone conversation with me. “I feel like I am a human being.”
Sharing power, building networks
Under Reiskin’s leadership, CCDC hands over a lot of power to its members to take on advocacy roles.
“Julie is just one of those women who is so sure of herself that she gives you the latitude to make decisions,” says Shannon Secrest, who is among them.
Secrest was moved to get involved in disability advocacy because of her son Logan, who is deaf, autistic and non-verbal. Among other things, she’s been advocating to limit the use of punitive discipline practices in schools, a policy goal she says is personal for her because of abuse and neglect that her son has experienced in school.
The backing of CCDC has been crucial in gaining the ear of decision-makers, compared with when Secrest was working on her own. “The majority of the time when I first got started, what I heard was, ‘you’re just a parent. You’re not a professional.’”
CCDC’s members gain strength from each other.
Ptisawquah, who uses just one name in accordance with her indigenous heritage, is another trained advocate, who has worked to bring additional services to young people with disabilities in the Durango area.
“For me, personally, [the most rewarding thing] has been to make connections with other people around the state that have disabilities that are wanting to advocate,” she says. “If I can’t find a resource, I have people I can call and ask, ‘How do you do this?’”
This strong network can pay off. Torres-Vega recalls, a few years ago, fighting to preserve payments for parents working as caregivers for disabled children. He helped organize a team of these parents and their children to show up at each meeting of the Medical Services Board in which the issue was being discussed.
“Having the moms all there, their kids moving their wheelchairs, moving our wheelchairs, sitting on our laps, and in the meantime everything being broadcast over the internet—it was very disruptive, and it was intentional,” says Torres-Vega.
A model worth sharing
Reiskin has pushed other nonprofits to incorporate the ideas, input and contributions of those most directly affected by policies, including in the meetings of health equity advocates convened with funding from The Trust for the past three years.
She wasn’t alone in pushing this strategy. Other HEAS grantees—including Padres & Jóvenes Unidos, which does education-related advocacy and is driven by the concerns of parents and youth who make up its constituents, and Together Colorado, a community-organizing network of faith-based groups—have histories of promoting the most deeply held interests of their community members, through the work of these same community members.
However, for many other nonprofits, this way of working is foreign, and can be anathema to the demands of funders and public agencies that work be completed on a set timeline and in predictable fashion. Some advocates didn’t immediately recognize its value, says Reiskin.
“Now I see more people understanding why it’s important and wanting to do it, and struggling with how to do it,” she says.
In fact, the idea has emerged as a key part of the HEAS organizations’ shared ethos.
Part of what has helped change people’s minds, says Reiskin, is the anti-racism work that the nonprofits in this cohort have undertaken—some of which has gone straight to the thorny problem of well-meaning people making decisions on behalf of others who don’t share their experiences or concerns.
She adds: “It feels to me that through the discussions about racism, that’s what opens them up to thinking that things need to change, and that the status quo isn’t working for anyone. That’s why we have to involve affected populations.”
Policy solutions that don’t involve input from the people most affected by them, Reiskin says, will always be the wrong ones.
The day-to-day work of CCDC’s disability rights activists can be a grind. But four decades after that protest at Colfax and Broadway, their work has helped make Medicaid stronger, schools safer, public venues easier to navigate if you break your ankle, and the bus less of a pain if you’re pushing a baby in a stroller.
That is to say, their work has made life better for all of us—not just those of us with disabilities.
In a recent article for the Stanford Social Innovation Review, Angela Glover Blackwell, the CEO of research and advocacy organization PolicyLink, coined a phrase for this phenomenon. She called it the “curb-cut effect.” Curb cuts—the sloping ramps set into pavement that let wheelchairs climb onto sidewalks—were made ubiquitous not by accident or charity, but by the activism of people with disabilities who demanded them. And yet one study found that given the choice, nine out of 10 pedestrians will go out of their way for a curb cut.
“There’s an ingrained societal suspicion that intentionally supporting one group hurts another. That equity is a zero sum game,” wrote Blackwell. “In fact, when the nation targets support where it is needed—when we create the circumstances that allow those who have been left behind to participate and contribute fully—everyone wins.”
These days, CCDC’s focus is on preserving the gains it has made.
On Capitol Hill, says Torres-Vega, “we walk into any government building and ask for a meeting and we get it.” Reiskin says: “I can’t remember the last time I’ve been totally blown off by a state legislator.”
Decades of work have meant that Colorado’s systems and programs for people with disabilities—despite the problems—are some of the better ones in the country, says Reiskin.
Colorado’s Medicaid policy, for instance, offers relatively strong support for the in-home care of people with disabilities. That’s important for many reasons; it’s less costly than institutionalization, and allows for a greater degree of individual and cultural flexibility.
“One of the beauties of Medicaid is that there are options that really fit well culturally with Native Americans,” says Ptisawquah. “Providing home- and community-based services, that goes in line with a lot of indigenous culture where you keep parents and grandparents at home.”
That could all be in danger, Reiskin says. At the federal level, the GOP’s doomed bill to repeal Obamacare, the American Health Care Act, included cuts to Medicaid that almost certainly would have hurt people with disabilities, who incur a disproportionate share of the program’s costs. Even after that bill died, Reiskin isn’t convinced that the risk has passed.
What would happen, for instance, if Colorado’s Medicaid buy-in program that allowed Reiskin and others to drop their Social Security benefits were scrapped? “We’d be screwed,” she says.
“What people with disabilities have been taught to do, if your benefits are being threatened, is to keep your head down,” she says. “I think it’s really important that we don’t do that, that we be as active and engaged as possible, meeting with people and joining all the coalitions. … At least make people look us in the eye if they’re trying to kill us.”
It’s terrifying, Reiskin says. But she’s also hopeful.
“If there’s anything good to organize on, it’s this, in terms of really building a strong community,” she says. “It’s up to us.”
Related Article: Disability Justice at the Intersections