Section 1: BILL SCHNEIDER: Okay. Today is April 20th, 2009. I'm Bill Schneider. I have the pleasure today of talking with Don Brandon. And we tried to get together earlier but the volcano got in the way, so thank you for taking time and making this opportunity for us. Let's start by having you talk about your family history a little bit, about your parents and growing up, and then we'll get into the issue of Morningside.

DON BRANDON: Okay. I am the son of a first generation Mexican‑American family that lived in Colorado. My two older brothers were also born there. And my dad was ‑‑ did a variety of construction jobs.

And in about 1950, he got in trouble with the police in Pueblo, Colorado. And Pueblo was one of those communities that had a lot of back ‑‑ racial tension between the White ‑‑ well, what do you call it, the White Government and the Hispanic population that lived there.

And after getting into a series of brawls with the police, he figured his best course of action was to get away from Colorado, and in the late '40s and early '50s, the best place of refuge was a Territory that was called Alaska. And it seemed to attract a lot of people who were running from something or looking to ‑‑ for gold or whatever, and my dad had both of those visions, looking for gold and, you know, trying to get away from the constraints of life in Colorado.

And so he separated from the family to go find a career and ‑‑ and make his way in Alaska in about 1949. And after securing a job with the F. E. Company, working at Chatanika Gold Camp, eventually brought us up to Alaska. "Us" being my two older brothers, Joseph and Norman, who were 3 and 4 at the time, my mother and I. And I was 8 months old when we made the trip to Alaska.

And some of my earliest memories are growing up in Chatanika Gold Camp when it was an active gold camp and the dredge was running and my dad worked out on the dredges. And you know, it was really extremely hard labor.

Even though they provided cabins for the workers, they were one‑room cabins, so when you bring a family of four into a one‑room cabin that they had at Chatanika, it created a lot of challenge for ‑‑ for the families. And you add to that two ‑‑ two children, the one baby and two children that have developmental disabilities, and you kind of get the picture of what was going on.

I think the cabins weren't much bigger than 10‑by‑12 one‑room cabins, or something small like that. I don't know the exact dimensions, but having visited up there since then, I know that they weren't very big.

And so my dad worked at F. E. for ‑‑ and in Chatanika for a few years, and eventually he went to work at Usibelli Coal Mine as a coal miner because I guess it was more year‑around work or something like that. And so he would fly in and out of Healy at the time before the highway was there, the Parks Highway.

And I do have memories of us visiting him while he was in Healy and arriving ‑‑ driving ‑‑ riding on what was called the Doodle Bug. It was a big Chevy Suburban that was mounted on tracks, and the engine of the Suburban was used to cross the train trestle because there really wasn't a road connecting Healy to the Usibelli Coal Mine area, which there is now.

And some of my earliest adventures were walking with my dad along the train trestle from the mine. And because of the nature of work in Alaska, my father worked construction in the summer and tended bar in the ‑‑ in the winter.

And about every March when things started thawing out, he would leave his ‑‑ his job as a bartender and go start working construction. This had its impacts on our family.

My mother was a rather independent woman, one of the first liberal women that you might want to meet, and she wanted to go to work. And ‑‑ but she had three of us to tend to. And toward the end of my mother's and father's relationship, a fourth child showed up, my younger brother Merle, and he was born right at the end of their marriage.

Section 2: And so my mother is raising three boys in Fairbanks prior to Statehood. And she has two with developmental disabilities, and me, an extrovert with up syndrome, as I put it, because I was always looking for something to get into. And then there was my little brother.

And my mom's way of trying to take care of the family and keep things together when we lived in Fairbanks was to hire a live‑in baby‑sitter to offset some of the cost for taking care of my older brothers, as well as providing, you know, some sort of stability when she wasn't available all the time.

And so we went through a series of baby‑sitters, and we lived in a house on 16th Avenue in Fairbanks. It was a log cabin that burnt down during the flood of 1966 or '67 ‑‑ '67. And ‑‑ but it was ‑‑ it wasn't a big place and it was really cramped. I think it had two bedrooms, so if you can imagine having four children living in bunk beds, a live‑in baby‑sitter and my mom, and it was pretty ‑‑ pretty tough times.

And during the course of these things, she tried to find placement for my brothers, Joseph and Norman, in the school system in Fairbanks at the time. And at that time, the ‑‑ the places that had ‑‑ that they could go to were place ‑‑ there was a real small program, as I recall, at Main High School, or in the Main High School building on Cushman Street.

And eventually, they developed Special Ed services at Barnette, what is now Barnette Elementary School, which I think was sort of a junior high location when it was first built in the very early '60s.

And ‑‑ but it was in those ‑‑ I guess Barnette was built in the latter part of the '50s, it was in those settings that my brothers would go to the school, and because they were lower functioning, kids with developmental disabilities, they were placed in class settings with kids that were older and had various levels of functionality.

And so you can imagine it was quite a challenge for the school teachers and the educators at the time to try to maintain what I remember was just one class that everybody was in. So it was more of a day care scenario than it really was Special Ed, as I look back on it.

Section 3: And in the course of this, because of all of the challenges of how our family was being raised and the things my mom was trying to do, working from Eielson Air Force Base and then eventually, Geophysical Institute. It became pretty evident to her that it was just too many balls to try to keep in the air at the same time, with two younger children, and then my brothers, Joseph and Norman, starting to get in the age range of 7, 8, 9, and 10, those age brackets.

And so she made a decision during that time to have my brothers placed in Morningside Hospital. And as I recall, it seemed like that was the only other option that was available besides the Special Ed classes in Fairbanks. And her biggest concern was the level of independent living skills that my brothers didn't have.

And that, please remember, as I use those terms, those weren't the terms we were using back then. The terms she was looking at was ‑‑ were things like, well, how to deal with their incontinence issues, how to deal with their lack of attention, or you know, because she really believed that there was opportunity for them if we could find the right environment, and I'm sure she placed a lot of hope in Morningside being a place like that.

And I think a lot of families in Alaska did something like that, in spite of some of the information that was coming out of Morningside that was circulated in the Daily News‑Miner in the mid '50s and stuff saying that there were ‑‑ (Break in interview.) BILL SCHNEIDER: Well, let's ‑‑ let's pick up from there. We're recording now, and you were talking about the decision that your mom made, that very difficult decision.

DON BRANDON: And she didn't have anybody really to bounce that decision off of, that I'm aware of. Not being married, I'm sure whatever investigation she did about services that were available she had to do with either social workers in the community at the time.

And my mom was not an unintelligent woman. And so I am sure that she was dealing with some of the concerns that were being raised in the News‑Miner about Morningside Hospital, some of the concerns that were ‑‑ were just floating around in the state.

But I also think that it was probably one of the closest facilities. Looking back on it now, I realize it was an institution, but it was probably one of the closest areas that was set up to deal with the concerns and needs of people with developmental disabilities.

And so she put ‑‑ she took a look at what our circumstances were and the tensions that we had at home and what Morningside apparently seemed to offer and made the difficult decision of placing my brothers as residents at Morningside Hospital.

And I'm thinking the year was 19 ‑‑ I said 1960, but now that I recall, I have a picture of us visiting there in 1960, so it had to be earlier than that. It was probably right about the time when I turned 4, which would be probably the latter part of the 1950s, 1958, '59, something along those lines.

I do know that the decision was traumatic enough for her that after my brothers went to become residents at Morningside that I ‑‑ because of the smallness of our little log cabin, I could remember hearing her cry and pine about the separation of ‑‑ of the family.

And I didn't quite understand all of the anguish she was going through, but I did miss my brothers because, you know, when you grow up with ‑‑ in a family with disability, that's normal for you, and it doesn't seem like there's anything different about it, it's just other people don't have brothers like I had, but so what. You know, it was just ‑‑ just the way things were.

I do know that over the years that she had lots of issues about their care and she would make visits to see them about two or three times a year, particularly during the holidays, and it was on Christmas and Easter that they came home a week ‑‑ a week or two at a time.

And we could see some progress, seemingly, in some of their independent living skills, but not all of them, because a lot of the concerns that we had as far as why they were placed at Morningside were still concerns even after when they would come visit ‑‑ with ‑‑ with the family for a week or two period during Christmas and Easter.

Section 4: BILL SCHNEIDER: Yeah. That's ‑‑ sounds like your mom went to some pretty long lengths, though, to maintain the contact and to keep the family together. It must have been very difficult as a single mom.

DON BRANDON: But my mom was an unusual woman because eventually, we all became residents of Washington or Oregon. I'll tell you what I mean by that.

My mom really knew that she wasn't going to be able to make it on her own, even when there was just two of us, my ‑‑ my younger brother and myself. And the process of meeting someone new was overshadowed, oftentimes, by the fact that she had two little kids at home, or four little kids at home.

And so one of the things that happened was that we met a family, because my mother worked at Eielson Air Force Base, met a family that was a large family, as I recall they had 10 kids, which was not all that unusual in the late '50s, and when they moved to the Tacoma area,

my mom created some sort of contractual arrangement with them, in the sense that she would pay so much money a month for me and my little brother to stay with them for about a year while she was able to sort of improve her circumstances where she was at and not have to be concerned about paying for the baby‑sitters because that still was an issue for us even though my older brothers weren't ‑‑ were no longer a part of our ‑‑ our living situation.

So for about a year, me and my little brother lived in Tacoma while during that time my mother transitioned from working at Eielson Air Force Base on the flight line as a civil service worker to working at the Geophysical Institute for the University of Alaska.

And it was during those times, too, when she would come down, we would all sort of ‑‑ she would bring my older brothers from Portland up to Tacoma, and we would all sort of hang out at the Anderson's house in ‑‑ which they had. The good news was they had a huge house for us all to be in.

And of course, when you're kids, camping out in the front room was a big deal, it was like camping out in the backyard almost, so it really wasn't that strange of an event for us to be piled all over the living room floor and that kind of thing, as we were able to visit.

And I remember on one occasion, my mother came to Tacoma and we traveled to Portland, but I don't remember all the details of it; you know, it was a first grade memory, as I recall.

I do remember one visit that we made with my stepfather. My mother remarried in about 1962, '61, '62, somewhere in that area, and my stepfather had not met my older brothers. And so we made a trip to Portland, and we ‑‑ I remember arriving at Morningside Hospital and feeling a real sense of this place is really different.

It felt scary to me because my ‑‑ when my parents went into the office or wherever they were going to get my brothers, Joseph and Norman, so we could go do some stuff together, I remember all these unusual young people and adults with developmental disabilities scurrying back and forth from place to place.

And one guy actually got into the driver's seat and started like he was going to drive away. And one of the staff members at work there came and discouraged him from doing that. And it was after that we started locking the doors when we were there because it just ‑‑ you just never knew what was going to happen. At least that's the sense that I ‑‑ that I recall from it.

And I remember making one other trip there when I was 12, which was the last time I saw my brothers as residents of Morningside Hospital. And it was after my mother had passed away. And by that point, they were in the process of becoming wards of the State of Alaska.

Section 5: BILL SCHNEIDER: When did your mother pass away? DON BRANDON: My mom died in 1965. And in Fairbanks. And one of the big concerns she had was what the outcomes were going to be like for my brothers. Because she wasn't going to be around to sort of guide that process or influence it.

And I don't ‑‑ I do know ‑‑ like I said, I do know that my stepfather and my brother and I visited Joseph and Norman on our way out of Alaska in the process of moving to South Carolina. And from that point on, all I had ‑‑ we didn't have any contact with them from the time I was 12 until I was about 25 years old.

But during that 12 or 13 years, as wards of the state, they were moved out of Morningside and brought back into the state, were residents at API , and then residents at the Forrest Charles Boarding Home for a few years before I became their guardian again in 1984.

BILL SCHNEIDER: And tell me about that decision to become their guardian. DON BRANDON: The decision to become Joseph and Norman's guardian was based upon a real sense of family and responsibility that my mother had built into me early on.

And even though living in South Carolina, going to high school and college there, and even graduating from college to go on to graduate school in Texas, I always had the sense that I need to go back and collect my brothers or become responsible for their welfare.

And in 1978, I took a trip to Alaska to do two things, to find my biological father and to find my two older brothers. And my biological father, even though my parents were divorced when I was 3, never had any contact with my brothers from the time when I was 3 until I was 25. So that's, what, about 24 years or so. Or 22. Whatever the number is. Might even be 23 years, if I do my math correctly.

But anyway, there was a significant period of time when he didn't have contact with them. I don't know that he made many attempts to contact them, but toward the last five years of his life, he was very actively concerned about coming in contact with them.

My progress for moving back to Alaska was, like I said, was to catch up with Joseph and Norman, get reacquainted with my biological father who I didn't know, didn't grow up with, and in during the course of that, it gave my biological father the opportunity to get to know his oldest boys.

And ‑‑ and I kept pushing him to become their guardian, and he resisted that, mainly because he thought that their situation was better where they were at, and if he became their guardian, he might mess things up for them.

And I think a lot of that has to do with his lack of familiarity or with dealing with some of the issues that ‑‑ for people with significant disabilities, thinking that the state or an institution understands the needs of people with disabilities better than the family might. Because I think that was kind of one of the ‑‑ well, I know that was a prominent concern that he had.

But because I didn't want to fight him in court to become their guardian, I just sort of waited and bided my time, so to speak, until when he passed away in 1985. One of the first things that happened within about three months of his passing, was I became my brothers' guardian. Well, he passed away in '84, so it was ‑‑ I became their guardian in 1985.

Section 6: BILL SCHNEIDER: Did your mom know that she was going to die? DON BRANDON: My mom knew that. She was getting worse and worse. She had a gallbladder operation that ‑‑ and at the time, Fairbanks Hospital had the highest morbidity rate of any hospital in the United States. We didn't know that at the time. It's one of those things that you find out as you look back in history and you discover that.

And she had a gallbladder operation that wasn't done well, and it caused her liver to get infected. And that infected liver, because of that gallbladder operation, caused her to develop cirrhosis of the liver. And so it was a slow, gradual death over about an 18‑month time frame. And she was hospitalized for long periods of time.

And there was one summer that she thought she was going to die, she sent me and my younger brother away to South Carolina again for a summer to live with my stepfather's family, because she didn't want us to be around to see her continue to deteriorate.

And ‑‑ and it was that following winter that, after we came back, that she ‑‑ that following spring that she actually did finally pass away. So she didn't ‑‑ all she did was give us a summer vacation in South Carolina, and ‑‑ and her condition continued to deteriorate over the next 9 months or so.

BILL SCHNEIDER: So when you took over guardianship, was that for both Joseph and Norman? DON BRANDON: I became the guardian of Joseph and Norman together. It just so happened that guardianship is something that has to be renewed every so many years, and they had been wards of the state, I guess, since they ‑‑ since I was 12, and by 1984, I was in ‑‑ I was in my early 30s, so for about an 18 year time frame, they were wards of the state living at API, and at that time at the Forrest Charles Boarding Home, outside Palmer.

And my first ‑‑ and ‑‑ and at the time, I was also the manager of the farthest north independent living center in the state, called Access Alaska. We opened that office in 1984, in the fall of 1984.

And one of the things that independent living centers are charged to do is to, more so then than they do now, was to liberate people from institutional settings. And the first two people that I liberated from an institutional setting were my brothers Joseph and Norman.

And it was kind of funny. As they are now residents of Fairbanks Resource ‑‑ or they became residents of Fairbanks Resource Agency , and I had a contact there whose name was Colin Showley (phonetic), and when I described their circumstances at the Forrest Charles Boarding Home, he put them on an emergency list, and which actually gave them priority for placement at FRA.

And so I became their guardian in October of 19 ‑‑ I think I said January ‑‑ I became their guardian in October, but Joseph and Norman became residents at FRA somewhere around January or so of 1985, which was fairly quick, which was a fairly quick transition.

And from the time I became their guardian to the time they were involved in the ‑‑ in a community based living program. And so it was ‑‑ it was really different for them because they had so many institutional behaviors that they brought with them.

I remember one time they were teaching or giving people responsibilities, and they told Norman to make lunch. Well, Norman's process for making lunch was to make sandwiches for 23 people. Well, when he went to the kitchen to make lunch, by the time they caught up with him, it was 23 sandwiches later.

And your ‑‑ everything that was done in a group process. Even in those types of institutional settings, you know, there were certain days when everybody took a shower and they were just lined up like cars at a car wash and run through the shower. When it was the day for haircuts, everybody got the same hair cut, they got a buzz cut kind of like mine.

And then so those types of institutional behaviors were pretty prevalent with them. And they ‑‑ when they came ‑‑ came out of those things, situations, at FRA. And one of the other features about institutional behavior is that you don't really own anything. Everything in other places belongs to you. And so that ‑‑ they didn't have a boundary of ownership.

I recall one time I took them a bunch of clothes that we had gathered for them, and then our next trip the next month, we saw all the clothes that we had gotten for Joseph and Norman being worn by every ‑‑ everybody at the facility where they were located. And it was kind of like, well, this isn't going to work, you know, because we were trying to take care of Joseph and Norman, but they literally didn't have any ownership of stuff. And I guess the institutional setting that they were in didn't allow for them to maintain ownership of things, or people came and took them or whatever.

But when they came to the community‑based program at FRA, it became problematic for Norman particularly to know what was his and what wasn't his because he figured everything was his because in an institutional setting, that's the way it is. You don't have any ownership. It's very ‑‑ very ‑‑ much more communal, or ‑‑ unless you really stake out a claim on it in some vivid way where nobody else will touch it.

Section 7: BILL SCHNEIDER: So Norman is now living in Fairbanks? DON BRANDON: Joseph and Norman both lived in Fairbanks. Norman passed away about two ‑‑ two years ago. Joseph still lives in Fairbanks, and he's probably about 59 years old now. And he's still a resident at FRA. He lives in an apartment cluster. And he works with a spud buggy at FRA and participates in a lot of the recreational programs that Fairbanks North Star Borough has and events like Special Olympics and stuff like that.

BILL SCHNEIDER: And as guardian, what are your responsibilities? DON BRANDON: Basically to make ‑‑ whenever there's a decision to be made about their health, welfare, you know, I'm the one that makes that decision.

It's ‑‑ when you make a decision relating to what kind of benefits they get, what types of ‑‑ how to spend down their money, which is a real challenge for some people, because they are in a ‑‑ they actually can save money living off Social Security, and so we have to look at ways to spend down their money within the time frames or the constraints of what ‑‑ what Alaska state law allows and Social Security allows.

So making decisions about what's an appropriate purchase for some of that money. Because they do pay their own way as residents there at FRA using their Social Security, Alaskan housing supplements, and stuff like that, sort of compensates and offsets the costs of where they are living.

BILL SCHNEIDER: Well, you've had kind of a unique perspective on the evolution of services. DON BRANDON: Yeah. Yeah. I've ‑‑ I watched in the early years from an uninformed understanding of what was going on around us because, you know, you're a kid, you're growing up, you're trying to survive your own teenage years. But at the same time, when I became their guardian, they came with a little bit of history about where they had been.

And I say a little bit because their years at API, their years at Morningside, their records or their medical history was very, very limited.

I was concerned about some of the fears that my brothers had picked up along the way. Joseph still doesn't like anything inserted in him, like even an oral toothbrush, he can't stand those types of things. And there's some ‑‑ some of these behaviors are reactive to other memories in his life that are very uncomfortable.

And so, you know, some of the things that would assist him functionally are he still rebels against ‑‑ and we just sort of let him, we have to just approach it differently. Like going to the dentist and all those types of events are not easy things for him to do, for whatever reason for ‑‑ that ‑‑ because of things that have taken place in his past.

And ‑‑ but we just don't know what those reasons are because the medical records don't really tell you the bad stuff, they just tell you what, you know, they want you to know. But something definitely happened along the way that has created some of the fears that he has in those areas because, I mean, there's no ‑‑ no memory that I have about why they might be what they are.

Section 8: The thing that I think's been interesting about Alaska in their transitionary phase is the way they tried to export people with severe disabilities, provide services for them, because they didn't have the infrastructure for themselves. The other thing that was unusual is that when they built API, they had people with developmental disabilities in mind in that process.

I don't know what good that was because I remember their medical records talked a lot about the ways they would ‑‑ in order to control behavior, they would sedate people. And so there was a lot of discussion in their medical history about the kinds of medications they were taking to suppress behavior.

When they came out of API and went to the Forrest Charles Boarding Home, a lot of that medication went away because they were getting much more free range to participate in the country living that they ‑‑ that they had there in Palmer. But even in that scenario where they were ‑‑ it still wasn't the very best scenario for them, in my mind, and that's why we got involved with FRA.

I remember my mother was ‑‑ you know, we were talking about some of the concerns she had. She was an active member of the ARC in Fairbanks, back in the early ‑‑ I think the early renditions of it, late '50s and early '60s. And she participated in fund‑raising to build programs.

And Alaska has seemed to have had this as a theme among their programs, to bring our children back home. Because she was actively trying to do whatever she could to get Joseph and Norman closer to Fairbanks and out of Portland.

And she participated with Margaret Lowe at the State Fair, and my mother would sell tacos. And her and Margaret were active taco sellers or dispensers at the State Fair every year.

And I remember Margaret, I ran into her in Juneau when she was the Commissioner of Health and Social Services several years ago, and I mentioned to her who I was, and she remembered my mother, and mainly because my mother was so protective of her taco recipe. She would take her ingredients down to Foodland and have them placed in the meat and she would pre‑mix them. And so nobody really knew what went into the taco meat, but everybody really liked them. But nobody knew what the recipe was.

BILL SCHNEIDER: Oh, that's good. DON BRANDON: But it was those types of things my mother would do, and part of that, her history of trying to, you know, make things better and working in Fairbanks to ‑‑ to make that happen.

So, you know, I've seen the cause of why institutionalization takes place, I saw my brothers placed at Morningside, I saw my mother working to try to neutralize that, and then in their personal history, knowing that they participated at API, and at some of the rural homes around Alaska, too.

Well, they also lived at Harborview for a few years because right after they built API, I think they built Harborview in Valdez, and they lived there for a few years. And it was from there to the Forrest Charles Boarding Home that we eventually ‑‑ that's part of their progress. So they were involved in most of the major institutions ‑‑ early major institutions in Alaska as residents.

Section 9: BILL SCHNEIDER: The proceeds from that taco, how were those proceeds used? DON BRANDON: I'm not exactly sure. I was only, you know, 11, 10, 12 years old, but I think they did it for fund raising to build, you know, a local home for people with developmental disabilities that ‑‑ so that the families could be closer to their kids. That's how I understood it. But I'm not ‑‑ I'm not ‑‑ I'm not real sure. All I remember is having to clean up the tables and doing what the kids do to help support it, but not really understanding the issues per se.

BILL SCHNEIDER: We have an interview with Margaret Lowe in this series. DON BRANDON: Oh, cool. BILL SCHNEIDER: Yeah. Well, this has been ‑‑ this has been really good. Is there ‑‑ is there anything else that we should add at this point?

DON BRANDON: You know, when I think about the lives of my brothers and their 25 years of institutionalization, outside and in Alaska, I think that Morningside was one of the darkest times for them. Factored by the distance, separation from family, and just not really knowing what was going on for them at Morningside.

I know it certainly was one of the most difficult times for us as a family for them to be there. And it was during those times when we did have a family because my mother passed away when I was 12, we sort of had a very dysfunctional version of that with my stepfather's leadership for me and my little brother.

And it was always a concern that they were in Portland, and I was glad to hear that they were back in Alaska, but I really wasn't sure about what that was like either. But I do think that Morningside stands out as just one of those enigmas in their past that I think Joseph is still recovering from.

BILL SCHNEIDER: Well, and it's interesting that you've chosen to work in this field yourself. DON BRANDON: I don't know if I chose it or it chose me. Working with people with disabilities was not necessarily a career goal of mine, or being involved in civil rights for people with disabilities wasn't a career goal.

My experience with disability has ‑‑ has been a huge factor in this. And sometimes you're taught lessons about the experience of a disability, but you don't know you're being taught them. And that's kind of the way I kind of wandered into this.

My career goal prior to being involved in this type of work was ministerial work, working with people in churches, working with people, help rebuild their lives, and ‑‑ but it became ‑‑ it's become a much more purpose ‑‑ purposeful impassioned part of what I do, it is what I do because I've ‑‑ you know, when you walk in a fog for X number of years and you finally wake up and realize you're in a fog and try and find your way out, you realize there's probably lot of other people that are walking in that same fog.

And I think that's the way disability affects people is that we live in denial of its impact or its effect on us, and we build services to protect us from them, or to deal with them in a separate capacity, and not realizing that we and them are the same people. You know, we're genetically the same. And disability is a normal part of our life experience. It's our way of reacting to different disabilities that makes disabilities such the enigmatic feature that it is in our society.

BILL SCHNEIDER: Well, this has been very good. I appreciate you taking the time. DON BRANDON: Well, Bill, thank you. And thank you, Karen Perdue, for calling me one day.