Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

A Day in the Life of Ed Roberts

Lee Roberts talks about his father, Ed Roberts

Traveling by Air

Lee Roberts: No iron lung for 15,000 pounds of it. When he left town, he brought his, he brought his respirator and about eight car batteries, which made it absolute hell traveling on an airplane because it was against FAA regulations. Every single time we went to an airport, we were dealing with airport managers or the people above the airport managers. The constant struggle was FAA regulations versus my father's need to breathe and, generally, we won. Actually, we always won, but it took some convincing. The airport was always… We had to take his chair. He couldn't take his chair down the jetway. We had to literally go down with the people underneath the airport and make sure his chair got into the plane right because there's a certain point where you turn it off it auto-locks. Not a lot of people know that. Even if we tell them, they wouldn't know, so a couple of times it became very close to wrecking and a 750-pound chair delays everyone else. We don't want to have that happen.

We've always wanted an attendant to go. That was also against FAA regulations. So we had to learn how to be diplomatic, as well as let them know this is an absolute necessity. They didn't believe us at times, but we made sure we did. We wanted to always pre-board him. That way everyone could come in afterwards, he'd be ready to go. That way they were weren't sitting there waiting for us. We took the batteries in, we put the respirator under him, he had the hose the whole time. And before he had the respirator, he would frog breathe during flights, literally taking in sips of air like a frog does. And after the flight, it was the attendant going down to get the chair, batteries coming out, and you had this constant respirator and batteries throughout the entire way through the trip. That's the most essential thing that he needed, but it was quite a process going through airports, especially security, dealing with managers, but it's a lesson because you pretty much deal with anyone after that.

Sleeping in hotels, no different. This time there was no crane, so the attendant would lift him into bed. Same urinal process. He just had the respirator down on the side of the bed and the hose up into his mouth. Much quicker process than at home with the iron lung. So we're talking about 2 -2½ hours maybe in the mornings. And then in the evenings it was a quick just boom, into the hotel bed and from there just the basic bathroom and dinner.

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The GCDD is funded under the provisions of P.L. 106-402. The federal law also provides funding to the Minnesota Disability Law Center, the state Protection and Advocacy System, and to the Institute on Community Integration, the state University Center for Excellence. The Minnesota network of programs works to increase the IPSII of people with developmental disabilities and families into community life.

This project was supported, in part by grant number 2401MNSCDD, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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