Impact Feature Issue on Political Activism and Voter Participation by Persons with Intellectual and/or Developmental Disabilities

In September 2003, from the fourth to the seventeenth, 120 ADAPT members marched from the Liberty Bell in Philadelphia to Washington, D.C., joined at Baltimore by an additional 61 Marchers. I marched for ADAPT of Connecticut, thanks to the very generous support of the Connecticut Council on Developmental Disabilities and the State of Connecticut Office of Protection and Advocacy for People with Disabilities, as well as many individual and business donors. The purpose of the march was to build support for MiCASSA, the Medicaid Community-Based Attendant Services and Supports Act. MiCASSA would provide more community-based attendant services for personal assistance in the home, so that more people with disabilities could live at home in the community instead of in institutions.

Day 1

On September fourth, 2003, we started the Freedom March. Although it was pouring out, there was a lot of public support, with people standing on the sidelines cheering us. The marchers, most with power wheelchairs, some with manual wheelchairs, and one person with a developmental disability who used crutches, began the 144-mile trek with a rally in front of the Liberty Bell. The rally began with a speaker who pointed out that we were standing on the same block where two critical litigations for citizens with disabilities, Helen L. and the Yerusalem case, started at the First U.S. Circuit Courthouse. These two cases tested the integration mandate of the ADA. Another speaker got us fired up by reminding us that “ADAPT has led the fight for MiCASSA for ten years; we have made some progress but we cannot wait any longer. We march today to pass MiCASSA.”

This same speaker said that many people had asked him why ADAPT was having a march and they said directly or implied that there were better ways to get the point across. Many people he talked to before the march told him that people with disabilities couldn’t do it, or that it was too risky for a disability rights group that was made up of so many people with disabilities. “In reality,” he said, “we are marching for our lives, our freedom. We are marching for people in nursing homes and people at risk of being in an institution. We march for Congressional support and passage of MiCASSA. Here in Philadelphia we embark on a monumental endeavor. We will remind the nation that ‘We the People’ includes people with disabilities. ‘We the People’ includes people with mental illness. ‘We the People’ includes people with cognitive disabilities, sensory disabilities and the aging.”

Before we set out, ADAPT received a Proclamation from the mayor of Philadelphia, proclaiming September fourth through seventeenth as ADAPT’s Free Our People Days and supporting MiCASSA and the ideals of ADAPT. Speeches followed by a representative of Senator Arlen Spector, who is one of MiCASSA’s co-sponsors, and by Tom DeBrune of the Service Employees International Union (SEIU), which has also signed on to MiCASSA because many of its members work in nursing homes and want to see opportunities for in-home care to grow.

The local police escorted marchers the entire day until the march turned into the Glenolden First Presbyterian Church, where we gathered in a large room to eat and then sleep. The church building is 101 years old, yet it is still accessible. Most of us slept in the church but some slept outside in tents on the property surrounding the church. For the march, our campsites had been arranged long before. They ranged from this church, to a Goodwill parking lot, commuter lots, an ice rink (where they had forgotten to shut off the ice), a firehouse, and a few more churches.

Day 2

Day 2 was a very long day, 16.3 miles, as we marched toward Delaware. Forty of the power chairs died. Every day, when people’s chairs died, they used their last bit of power or were pushed by fellow marchers onto the sidewalk to wait for a ride to the camp. Those with strong batteries pushed the march forward, making it difficult for one marcher with cerebral palsy to keep up, but he was determined to march the entire distance. He uses forearm crutches and typically had no trouble keeping pace with the march, but with the extra long distances he fell behind sometimes. But he remained a strong part of the march, and we all supported him. Watching his dedication and having everyone share his feeling of triumph emphasized that the march was not about ability or disability, but about community.

Before crossing into Delaware, we passed a state institution. We chanted loudly, “Let our people go.” Other than that, crossing into Delaware was generally uneventful, except that the state police joined us to give us an escort the rest of the day. At the end of every day we met together for a debriefing and to get information for the next day. At the meeting on this night, we learned about the laundry plan, and all agreed that we would start with people who needed their clothes washed the most.

Day 3

On Day 3, U. S. Senator Joseph Biden Jr. of Delaware attended the rally that ADAPT held in Wilmington. As a strong supporter of MiCASSA, he said “This March should show those that oppose us in Congress that you not only have the right to do this March, but the capacity and the gumption to take care of yourselves.” He also said, “The most expensive thing to do is to put people into institutions. To those that say that we cannot afford to do this, I say we can’t afford not to do this,” and “This will be hard, but I have been a Senator for 31 years now and everything that matters did not come easily.”

Several marchers who have been with ADAPT a long time also addressed the rally. Among these was Anita Cameron, who is blind and has cerebral palsy. She was “placed” in an institution 19 years ago this day. She is angry and bitter still about the circumstances that took away her freedoms. “My seizures were out of control so I went to the hospital; they suggested I go to a psychiatric hospital. I was told when I was taken that I would only be there a couple of weeks. The judge said 60 days at most, but it turned out I spent a year with them.” Anita fought her way out of that hospital.

Day 4

On Day 4, we continued our journey through Delaware. For lunch, we stopped at the Boys and Girls Clubs of Delaware, who donated the food and drinks. Along the entire course of the march, lunches and suppers were often donated by organizations that had offered beforehand to support the march in this way. For the entire march in Delaware, the State of Delaware provided a truck with a large flashing arrow to follow us, warning traffic coming up behind us.

Day 5

On Day 5, we entered Maryland, where the Maryland state troopers escorted us with cars and a motorcycle. We had a great crew to get us rolling in the mornings and set up camp every evening. We really were a small city of 50 tents and assorted vehicles. The Camp Crew consisted of 10 people who spent two hours breaking camp every morning and four to five hours setting up camp each evening. Every night all our power chairs needed to be charged by the large portable generator we had brought, and this was done by another team. We also had a Night Team who stood guard for security, as well as a Food Team. While we were at supper, we were told by ADAPT’s leadership that we had received a call from Maryland’s governor welcoming ADAPT to his state.

Day 6

On Day 6, the march crossed the Susquehanna River. This was the only time during the march that all marchers were shuttled. We had to be shuttled over the river because the State of Maryland absolutely prohibits foot or bicycle traffic on the bridge, so we rode on accessible busses. Some of us felt angry because all over this country people with disabilities are being locked away in institutions, and here we were, being forced to get on these shuttle buses. But there was nothing we could do without delaying the march. All the rest of the march, the only time marchers rode was when we were picked up by our vans if our chairs died. Otherwise, all the marchers marched the whole distance. 

Not everyone accompanying the march actually marched. Some of our crew members rode in the 10 vehicles we had along with us. One of these vehicles was an old ambulance that made the laundromat trips; an RV carried our first aid station and the food, and our accessible port-a-johns were carried by an 18- foot flatbed truck. 

We had set up an e-mail address for the march for people to e-mail messages to individual marchers or the march as a whole. Over the course of the march, over 400 messages were received from across the United States and from disability rights supporters in other countries. That night, several pages of these messages were read to us at the evening meeting, and it was very encouraging to hear all this support.

Day 7

On Day 7, we got to Maryland, where we were welcomed by a city councilwoman and the council president, who said, “From the mayor and citizens of Aberdeen, you speak for all of us. We are glad to have you.” The councilwoman told of the relationship between Aberdeen, Maryland and their “sister city,” Aberdeen, Scotland. She read an e-mail from her contact there: “I read about the planned march on Washington. Here in Scotland, legislation was passed to allow all who require home care to obtain it free of charge. Pass that on to the folks concerned. If it can happen in this Aberdeen, why not yours?” 

That evening before dinner, a Hanford County, Maryland, government representative brought us a Certificate of Appreciation from the county, signed by the county executive. The certificate stated, “As you travel through Hanford County, know that we are committed to the full participation of all citizens, with and without disabilities, in our community, and we support the services that make the choice of independent living possible.”

The State of Maryland provided tremendous support for the march, coordinating to get the marchers across Maryland. These public agencies included the Maryland Transit Authority, Maryland State Highway Department, Maryland Transportation Administration, Maryland State Police, Aberdeen Police, and Hanford County Police. We also learned of other support efforts around the country, including a report from Tennessee that during the march so far, over 1000 faxes had been sent from Tennessee citizens to Senator Bill Frist asking him to support MiCASSA.

Day 8

By Day 8, we were sunburned and showing the effects of marching up steep hills, through rain and in the hot sun. It really helped to see the increasing public support for the march and our goals. People cheered, waved, and handed out glasses of water as we passed. At our evening meeting, Debbie Boyd of Austin, Texas, said, “I worked in supported employment for 10 years and I have seen some really horrible things, like sorting screws all day and then having them dumped back into the barrel. There are a lot of barriers, a lot of sheltered workshops. ADAPT says, we want a real job.” Debbie has a child with a developmental disability.

Day 9

On Day 9, the march reached the edge of Baltimore. By this time, we had marched over 100 miles from Philadelphia. That day we marched through a thunderstorm, and it rained all night, too.

Day 10

On Day 10, we marched into downtown Baltimore. Here we held a rally, where 61 new marchers joined us. They had received training the night before at a hotel where they were all staying that night before they joined us.

Day 11

On Day 11, we continued marching through Maryland toward Washington. The new people took a little while to learn how to stop without crashing into chairs in front of them, just like we all had done at the beginning of the march, so it was rough going for a little while.

Day 12

On Day 12, we continued marching through Maryland. That night, while we were eating supper, there was a sudden, fierce thunderstorm, and people got soaked. The storm was so sudden, that the crew had no time to get many of the wheelchair chargers under cover, and they got soaked, too. All these chargers had to be inspected and dried out before they could be used safely. This was a big problem, because it was the end of the day, so the power chairs had very little charge left. We held a meeting to decide what to do. Some of the wet chargers were taken to a nearby hotel to be checked and dried. When the chargers were deemed safe, some of the wheelchairs were able to be charged.

Day 13

In the morning of Day 13, it was announced that ADAPT would be meeting with the Bush administration to talk about MiCASSA, because of the impact of the Free Our People March. This was very exciting news. By the time the march got rolling, about 70 percent of the power wheelchairs were charged. The batteries of the rest of the marchers who use power chairs were dead or died along the way. These people had to be transported by van to that night’s campsite, but the march itself kept going.

Day 14

On September 17, Day 14 of the Free Our People March, we marched the last 4 miles of our 144-mile journey, into Upper Senate Park. That was the day before the hurricane was expected, and the weather was still beautiful. The people who had come to Washington to meet us joined us there for a rally for MiCASSA. At the rally we were addressed by many influential speakers, including Senators Harkin and Spector, the original co-sponsors of MiCASSA; Representatives Davis and Shimkus, who are current co-sponsors; and Yoshiko Dart, widow of Justin Dart.

This day, the final day of the march, fell on ADAPT’s 20th anniversary. Twenty years ago, ADAPT was organizing people to make public transportation accessible. Now, all people can ride the bus because of ADAPT’s fight for equality. When MiCASSA passes, people with disabilities will have the same right and ability to live in the community as the able-bodied have now because it will make the personal assistance services we need available to us in our own homes, wherever those homes are. But we all know that there is still a struggle and a lot of hard work in front of us.

July 30, 2004

There are now 119 members of Congress who have signed on as supporters of MiCASSA, including four from Connecticut: Senators Chris Dodd and Joe Lieberman, and Representatives John Larson and Rosa DeLauro. ADAPT of Connecticut is working on getting the rest of our Connecticut delegation to sign on.