The Minnesota Governor's Council on Developmental Disabilities
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.
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A Day in the Life of Ed Roberts

Lee Roberts talks about his father, Ed Roberts

Daily Routine

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Lee Roberts: A normal day. The word normal is interesting in itself when it came to my father in the morning. But, it was typically in the morning, a long process. A process that maybe others might take for granted, but for him just the simple steps to get him to where he needed to be in the day generally we're talking about four hours, maybe four to five hours. And after experiencing it for so long, it's a simple process, but that's because you get into the routine of being with him every day.

But it's first thing he loved to have tea so he would... The attendant would come over probably around 6 o'clock, 6:30, and then there was always the demand for tea—green tea, chamomile, Earl Gray—and he would always sit there, drink the tea. He had an iron lung, so he laid down and then he had a pillow underneath him, and the tea would be placed on the pillow, and then there would be a flexi straw coming up. Father loved flexi straws, couldn't do without them. That made a big difference on getting to his mouth when he's lying down in the iron lung,

So that was the... That was the breakfast part. It would vary on special attendants. Each attendant had a different cuisine that they would bring in for my dad. My dad loved food. That was one of his passions. So one attendant might have potato pancakes, another attendant might be a vegetarian—whatever it was—that was his breakfast ceremony.

Then directly afterwards then we had the bathing, and the iron lung would pull out. The attendants would have a tub that they would have sometimes in their hand but then would bring a stool over put the tub there, and they would go lower body first, always the chest, the arms, washcloth, not sponge. My dad liked washcloth, and very, very if to no soap usually. It was usually a wash down. Soap irritated his skin because like during your day, most people can wash off, scratch off irritants or use a cloth to wipe off irritants. My father couldn't; therefore, he didn't like soap because sometimes it would stick around. Not everyone gets everything off.

And from there he would usually then have his head washed. His head wash was interesting. The iron lung was old school and in fact that you had the placement where his head was—right here—and underneath that, you had to screw down just to get his head to move down to where they would put in a tub with a slit opening where his head would go into, and that's where they could wash it.

The tricky part was while they're putting this down, his head then now has no leverage to be held, so the attendants would have to hold his head. It would slowly go down and then with sometimes amazing balancing act with my dad's neck in one hand and the tub, place it underneath, then they washed his hair. And for going to the bathroom, it might occur a couple of different times, but my father had a bedpan, that was placed under him. He was lying down in the iron lung. Or he also had the same thing to pee into and that just go, you know, right between his legs. Seemed pretty simple to me, just seemed like an average routine.

And then I always liked the process of getting him from the iron lung, one huge piece of metal, into his wheelchair, another 700-pound piece. And he had this crane, three-wheels, tripod crane, that basically you pump like you're like lifting a car up like you're changing a tire. The crane came over his body, this is his body in the iron lung. The crane came over his body and attached to four different areas, and then was pumped up and lifted. And then the sensitive part was wheeling it out and then wheeling it back and then turning it around in the room and then getting it over to the chair which he had had for... I mean when I came into focus like 15 years already, so the chair had little niches that everyone has. You sleep in a bed long enough, you have a little groove. My dad had his groove in the chair. So there was always a difficulty in finding that right spot to put him in because there wasn't a lot of comfortability with him going down, then up, then down, then up. You wanted to get it right the first time, so that when he lowered in into his chair, everything was set.

After that, there was the neck brace because he had a corset, and a neck brace would go in down right here and here. It had a little V metal that came up into the corset, which was specifically designed for my father, for his head. He liked an opening here on the corset because he liked to move his head when he was talking or riding his chair or something so there was this open end on the left hand side, and then the corset was wider on this side. I think that's because when he moved his chair, his left side of his body moved more, so he needed more leverage in his ears. He didn't want his ears rubbing against that part. That would pretty much stick down like a fork right behind his back. His pants would be on. And then my father had two things that he put on after that. He liked a long-sleeved shirt, and he liked a vest. My dad loved vests. I never got it. I never understood it. Don't know why. Loved vests, loved Jerry Garcia vests. Loved vests with... kind of like that tie

But after that, all the time whether he's in the crane, his always on conference calls, always talking to people. Trying to do the work that the person who could make their morning a half an hour would already be in the office doing on the phone. So communicating with Janice Hoggan, his secretary at WID, doing scheduling, conferencing calling—just the regular normal stuff that everyone does, only he's doing it while an attendant, someone he worked with, was helping him to his morning. That process—and I think I got step by step pretty much—that process was four or five hours minimum. Depending upon his phone calls, depending upon special needs maybe, if he needed to use the bathroom more than once. If he needed just an extra wash—sometimes you just stay in the shower longer. You know what I mean. So it all depended upon that. We're talking four to five hours.

And then when it was time go home, the process was, it was always much easier. It seemed like the morning process since he liked to spend time focusing on the day with the teas and the peanut butter toast and stuff, he was all about business when it came to getting into bed. He was just so tired at the end of the day, it's a lot on you just to get up in the morning, sometimes I would notice. Sometimes it was just difficult to go through that long process. And then at night was, back comes out, shirt comes off, the crane is simple, you're up you're in. If he needs to use the bathroom, there's the bed pan, there's the urinal right there. And into the iron lung.

The only thing about the iron lung then, now is there was a hole in the iron lung where my father's head would go through. And this was always a sensitive point because sliding his body from the back side of the iron lung through the hole so his head would pop out on the other side, several times that's some places where he could get hurt because as you're moving that up, friction on the back of his body and if an arm catches and rolls... always had to be very careful doing that.

When his head came through, there was a plastic sheath that came around. And he always had a white cloth towel, and you turned kind of like the spigot on the iron lung where the hole was, and that slowly got tighter and tighter until basically it was airtight around his neck. You close up that thing, start up the motor in the back, which kind of looked like a sideways oil rig, but it was pumping air. And from there we would always watch SportsCenter. And that was my father's tone down—SportsCenter—and whatever dinner was served by the people he worked with, the attendants, or his mother Zona. She knew how to cook.

But that getting up and going to bed is a typical seven-eight hours of a person's day, so that right there... And he is on the phone, he was conversating, but that's far different from how much time I take to get up in the morning. How much time generally a lot of people take to get up in the morning.

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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.