Disability Rights: A Two-Way Street
Julie seemed like all the other first graders in her class, but there was something different about her. She had recently taken a ride with her parents into the North End of Hartford, Connecticut, a predominantly poor, African-American neighborhood in the city. After driving by many notably run-down buildings, they crossed a small bridge into West Hartford, one of the most affluent, predominantly white communities in the nation. Suddenly, they were driving by mansion after mansion. “I remember being five or six years old and seeing that and thinking…something’s wrong”, she told me recently.
The next day in school it was time to say the Pledge of Allegiance. “I had a real problem with the justice for all part because I didn’t think anyone meant it.” She refused and got in trouble. “That was my first act of civil disobedience.” Fortunately, the school did not incarcerate her.
Today, Julie Reiskin is the Executive Director of the Colorado Cross-Disability Coalition (CCDC) in Denver, Colorado. CCDC is Colorado’s leading advocacy organization run by and for people with disabilities. In August 2009, she was appointed by President Obama to the Legal Services Corporation, the single largest funder of civil legal aid for low-income Americans in the nation. She has a long history of advocating for social justice for many types of marginalized groups, with special expertise in disability rights.
Ms. Reiskin largely attributes her early commitment to social justice to her family. Her mother made efforts to integrate the public school Julie attended in Avon, Connecticut. She worked to implement bussing underprivileged kids from the city to the Avon schools. Her father was one of a handful of oral radiologists who accepted Medicaid in the 1960s and 70s. And her grandmother was a single parent, supporting her family as a secretary. She volunteered as an art teacher and set up a sort of artists’ commune for struggling artists on a farm she inherited. She was also multi-lingual and taught English as a second language.
In the early 80s, Julie was in a car accident and suffered a mild concussion, so mild that she did not need to go to the hospital or seek medical treatment at the time. She did, however, have double vision, which did not abate. At age 20, she didn’t think much of this until she developed extreme fatigue and back pain.
She went to the doctor but they could find nothing to account for the symptoms. The doctors recommended either a psychiatrist or a physical therapist. She followed up with both, but it was the PT who suggested she get tested for multiple sclerosis (MS). Shortly after getting tested, she was diagnosed with MS, an inflammatory disease that affects the axons of the brain and spinal cord. The condition often manifests after a physical trauma.
MS affects everyone differently. Symptoms can range from a hand falling asleep to being blind and relying on a ventilator to breathe. For Ms. Reiskin, primary symptoms are extreme fatigue, vision problems and heat sensitivity. Though she has used a wheelchair since 1989, she doesn’t consider that a disabling impairment. “But when I had to start using a wheelchair it was absolutely the end of the world”, she notes. She can’t remember why that was.
I asked Julie what comes to mind when someone suggests that she has “overcome” her disability. She immediately replied, “I hate that because, well, first of all…it has a presupposition that a disability is bad and something to be overcome.” However, she did spend the first six or seven years after she was diagnosed trying to do just that: trying to prove she was normal, in the face of self-hatred, and trying to get cured. “As long as I was trying to do that [overcome], having a disability was a bad horrible thing. And as long as a big part of my life was a bad horrible thing, my life was going to be horrible.”
The real obstacle to overcome was the societal image of disability. Typically, people have no expectations of people with disabilities, so if you do anything you’re a super-hero. As Julie puts it, “If you’ve accomplished something then you’re a super-crip and you’ve overcome your disability.”
When people with disabilities feel there are no expectations of them, there is a problem. Julie does not advocate for eliminating public financial support for people with disabilities, “but in a way, SSI and SSDI have been some of the worst things that have ever happened to us because…they’ve been done in a way that creates a culture of dependency where you get stuck in them.” She is referring to the fact that once you get on disability, it is extremely difficult to get off, and in fact, there are a lot of incentives to stay on.
People with disabilities have an obligation to do their best to contribute to society in as meaningful a way as possible. Many people with disabilities are not able to work in a traditional 9-5 job, but that doesn’t mean they can’t work at all. Everyone can do something, and in Julie’s eyes, they should. She sees the next step in the Disability Movement to be developing economic parity – getting people with disabilities out of poverty. But that type of equality will not simply be doled out. People have to demand it and demonstrate that they are responsible.
If policies change and work becomes more accessible, there must be people who will do the work. Julie believes that with the right systemic changes and the right personal attitudes, people with disabilities can do that work.
To meet the internal and external challenges presented by the consensus image of disability, people need to get “disability pride”. Disability pride is closely connected to the evolving community of people with disabilities, as well as a personal sense of self-worth. Julie describes the community as supportive, welcoming, diverse and filled with amazing and accomplished individuals. People communicate well about issues that matter and everyone “just gets it” about living with a disability. For this reason, many people find it more comfortable to be around others with disabilities, regardless of what type of disability it may be.
If you want to get your pride on, Julie recommends an ADAPT Action. An Action is a gathering of thousands of people with disabilities to take direct, non-violent action, including civil disobedience, to promote disability rights. Julie met her partner, Pamela Carter, at an ADAPT Action in 1993.
Pamela was only recently disabled at that time and it was her first Action and arrest. Ms. Reiskin, a seasoned veteran, stepped in to lend support. Robin Stevens, Pamela’s mentor at that time, warned her not to get involved with Julie Reiskin because she would break her heart. Pamela considered asking Julie out anyway, but she wavered. Finally, on the last night of the Action, Julie asked Pamela out and they had dinner together: nachos and virgin pina coladas. Every year on May 12th they have the same dinner to celebrate their relationship.
Julie has remained as supportive as she was during that first arrest. “Whatever I do she gives me support in it. Whether it’s writing or gardening, she’s incredibly supportive”, says Pamela. Julie is also the family’s primary source of fun. Pamela has two sons from a previous marriage, Chase 26 and Tom 25. According to Pamela, “I was the eat your broccoli, do your homework and be in bed by eight, and Julie was the Road trip!”
Summer road trips are an important part of the family’s history, for good times and bad. The kids loved traveling to New York and Washington, D.C. They would have moved to D.C. if it had been feasible at the time. But traveling through the south they encountered discrimination, even after the passing of the Americans with Disabilities Act (ADA). One night they were traveling in their van, looking for a motel to spend the night. Everywhere they stopped they were refused a room. At one point, the group in front of them obtained a room, and the clerk then refused the family. Julie remembers the blank stares of the staff as the two women in wheelchairs, clearly a couple, and their two sons entered the motel. They spent the evening in the van.
Julie has experienced plenty of discrimination on her own as well. Early on in the Clinton administration, she was selected to participate in a meeting with Hilary Clinton, as part of a universal health care reform lobby. To travel from Connecticut to Washington, Julie found a red-eye on AMTRAK that was perfect for her schedule. The company refused her, saying she couldn’t possibly travel that distance unaccompanied. A call to her congressman resolved the issue quickly.
Later, in a bizarre kind of reverse discrimination, when the group approached the White House to speak with Vice President Gore (he substituted at the last minute), everyone except people using wheelchairs were thoroughly searched before entering. Another time she was thrown out of a movie theater for being a fire hazard.
Although the thought of running a non-profit was repugnant to her in graduate school for social work, Julie has a been a tirelessly effective Executive Director at CCDC. Since taking over in 1996, she has added a Legal Program that acts to enforce the provisions of the ADA, crucial to the systemic change component of CCDC’s services. The other side of the agency’s work is volunteer non-attorney advocacy by CCDC members. This makes CCDC unique, as the only attorney/non-attorney based advocacy group in Colorado. This arrangement serves as a model for disability rights groups nationally as well.
Peter DeHaas, CCDC Advocacy Coordinator, describes her as very conceptual. “She thinks big and sometimes it can be overwhelming because she is always, always thinking.” They meet weekly to discuss Peter’s work and progress, with Julie acting as a mentor and sounding board. She gives him a lot of autonomy. He recently arranged to coordinate CCDC’s advocacy training with the University of Denver.
He sees his job as aiming to free Julie from the daily demands of the advocacy program so she can focus more on being Executive Director and developing broader agency strategies. With all the responsibilities of running the agency, Julie still does hands-on work as an advocate on individual cases.
While she is “probably the best non-attorney advocate in the state of Colorado”, according to Peter, Julie has learned some of her craft the hard way. When their son Tom was in third grade, Julie and Pamela felt there was something wrong. Julie went to the school to sort the issue out and to get testing for Tom, to see if he needed Special Education. She went, however, without her own advocate. One of CCDC’s primary recommendations is that you always go for services with an advocate.
Tom was tested and the school said “No problem”. Without thinking it through clearly, Julie accepted their assessment and Tom went on his way. As such, he was not placed in Special Education, which turned out to be a disaster when he reached middle school and his symptoms of mental illness began to manifest. Lesson learned for Julie: I’m not above taking my own advice.
Since I met Julie in the summer of 2010, I’ve noticed that she always seems to be thinking about disability rights. I asked Peter about this. “I often joke that she’s working in her sleep.” Recently, his hypothesis was proven true: in a meeting, Julie couldn’t remember if she had sent a particular email, or if she dreamed that she had.
Pamela confirms this assessment. She describes Julie as driven and focused like a laser beam on disability rights. “I think she feels the pressure of time, because most people with disabilities don’t live as long as the general population.” And there is a lot she wants to accomplish.
She does take two very important time-outs each day, however. Pamela points out, “The only time she is like a normal person is when she is holding Hank”, her tabby cat. Hank gets precious lap time every morning before work and at night when Julie comes home.
Looking at the state of the Disability Movement currently, Julie notes that identifying oneself as a person with a disability is becoming recognized as a cultural identity. This has been developing over the past ten years or so. Such identification is important because it makes organizing for a common cause easier and it helps reduce stigma. She also notes that improvements in medicine are changing the face of all kinds of disabilities, and perceptions as well. Cancer and AIDS are no longer death sentences, for example. And for the first time, we are seeing people with life-long disabilities live into old age.
With this in mind, Julie has a simple and clear message for people with disabilities: “Get off the couch!”
“We need to not be afraid to be ourselves and be proud of who we are but we also need to take responsibility… no one’s going to hand us equality. We’ve got to make it happen. We have to make it happen and we can. We have the capacity and the smarts and the ability, but we often don’t believe that about ourselves.”
For people with disabilities this means organizing, asking for what is needed and contributing as you are able. Perhaps the key to all this is pride. Do you believe what Julie believes?
“I don’t think a disability is something to overcome because I don’t think it’s something that’s bad.”