inDepth, Part 3

Oregon: Interview 4

Personal Information

Tom* is a good friend of Billy’s but has lived with Billy only a few months. They grew up together at the institution. Tom was quite anxious when talking about the institution. He has moved around a lot and was also concerned that the interviewers were going to move him again. Tom doesn’t initiate conversation very often. For example, he doesn’t voluntarily share when he hurts or feels ill, but will talk with a doctor when he gets to the office. He is about 60 and uses a walker. Tom is very detail oriented and likes things in a certain way. He gave a tour of his room. Everything is very orderly, and his National Geographics were stacked in order. At least one of the staff was someone that Tom knew in Fairview and seemed to like a lot.

*Name changed to protect privacy

Did you live in an institution at some point in your life?

“Yes.”

(Most of his life was spent in an institution. He made it very clear that where he is living today is where he wants to stay. He was concerned that talking about the institution meant having to go back to the institution.)

What was the name of the institution?

“Fairview.”

How long did you live there?

“Not sure.”

(Staff: 40-plus years.)

General Experience

What was it like for you as a person with a disability to live in an institution and not in the community?

“I stay here.” (He even seemed to come across as a little fearful or concerned.)

(Did not like living at Fairview. He moved to Keizer, South Salem, Monmouth, and now here. He doesn’t want to move from where he lives now.)

Do you have specific memories of a time in the institution which you think will help people understand what it was like for you?

“No. I like where I live now. I stay here.” (He repeated this several times.)

Housing Arrangements

What type of housing arrangement do you have?

(Shares home with two other men.)

Are you living independently?

“No.”

Do you live with family members?

“No.”

Do you share a home with other individuals?

“Yes.”

Do they have disabilities also?

“Yes.”

Is there staff to help you there?

“Yes, staff does everything. I want to start helping in the kitchen.”

If none of these describe the place where you live, please tell us about it.

What do you like about your where you live?

“Like where I live. I stay here. Pictures, on the wall in my room.”

(Tom showed us his room. On one wall in his room is a collage of pictures that he has taped up, from magazines. This collage is about 4 ft. across by 7 ft. high. We could tell that he continues to add to the collage until it gets so heavy that it falls down, then he starts over again. Each picture in the collage is connected to other pictures. For example, he had pictures of Amy Winehouse, who died. Also, there were pictures of alcohol bottles and other items related to Amy Winehouse. The alcohol bottles represented the type of alcohol she drank.)

Asked him if he listened to her music.

“Yes, I do.”

(Tom reads the Statesman Journal daily. He requested a copy of the document that we were interviewing him for when it is printed.)

(Staff: He keeps track of everyone’s schedule, both staff and housemates. He knows when they are supposed to be there and will say so.)

What would you like to change about where you live?

“Like where I live.”

(Staff: He doesn’t tell them when he is sick or where it hurts.)

“I talk to my doctor.”

(This is a great improvement when he can talk with his doctor about what is wrong.)

“The doctor talks to me not to staff.”

Community Life

What is the thing you enjoy most about your life in the community?

“Josh and Kelly’s house, fried chicken.”

(Staff: Josh was a staff member who previously worked with him. Josh and his family stay involved with Mike and take him out and to their home.)

Do you get to go out and “do things” in the community?

“Yes, shop for stuff. Go out to dinner.”

What are your favorite things to do?

“Go to McDonalds. Like cartoons, but not ones on TV now.”

Employment

Are you working?

“Yes.”

If you are working, tell us a little about your job?

“Day Break.”

Are you working at a job where most of the other individuals are also people with disabilities?

“Yes.”

Do you have assistance on the job—like a job coach or other aids?

“Yes.”

What do you like about your job?

“Taking pictures out of magazines and coloring.”

What would you like to change about your job?

“No like Day Break.”

Oregon: Interview 5

Personal Information

Sharon* is 58 years old. She is living in a housing complex in a unit by herself. She lives with no support except a person who helps with finances and emails. Sharon is very independent. Her house is immaculate and she is very proud of it. She monitors who comes and goes in the complex and knows everyone. She appears to be very well liked. Sharon was married and had two children that she raised. She now has grandchildren.

*Name changed to protect privacy

Did you live in an institution at some point in your life?

“Yes.”

What was the name of the institution?

“Fairview.”

How long did you live there?

“I was there from about the age of two until I was 18 and graduated there. I had encephalitis when I was very young. I think I was maybe one. Doctors told my parents that I wasn’t expected to live. I didn’t speak for about 200 days. Doctors didn’t think I would ever talk. The doctors didn’t know if I could even learn anything. They told my parents not to expect much.”

General Experience

What was it like for you as a person with a disability to live in an institution and not in the community?

“I didn’t know any different when I was placed there. When I first left Fairview I was very sad, but I don’t miss it at all anymore. I remember as a child going home by bus every other weekend to be with my parents. I moved in with my parents after I left Fairview. I helped take care of them as they grew older.”

Do you have specific memories of a time in the institution which you think will help people understand what it was like for you?

“As I got older I worked with the kids who were serviced through the Hearing & Speech area. I walked them to and from appointments and activities. I also walked the blind children. I didn’t get paid. I helped in the kitchen and helped to feed other patients.”

“I remember being in Special Olympics. In the cottages we could play inside or play outside with other kids. I remember going to the State Fair every year. I had lots of friends and had some special teachers. There was one teacher that was very encouraging to me. She made me feel very good about myself. We had to carry a colored card with us at all times. A green card meant you could go anywhere on campus. I left Fairview in 1973.”

“I would sometimes go to parties at an off campus house where there were young children.” (This was called Baby Louise’s Haven. It was started by a nurse from Fairview for infants and toddlers who would ultimately move to Fairview when they were older.)

(She showed us her certificates and photos that she saved. She still has her diploma when she graduated and her Awards Ceremony program.)

Housing Arrangements

(Sharon’s house is very homey and clearly decorated by Sharon. Lots of family photos, her cat, and lighthouse collection. She also has photos of friends and the friends’ family members because they are all close.)

What type of housing arrangement do you have?

“Apartment through HAP—Housing Assistance Program.”

Are you living independently?

“Yes.”

Do you live with family members?

“No.”

Do you share a home with other individuals?

“No.”

Do they have disabilities also?

“No.”

Is there staff to help you there?

“I have staff from my brokerage that helps me. Joan helps me check my email on Tuesdays.”

If none of these describe the place where you live, please tell us about it.

What do you like about your where you live?

“I very much like where I live.”

What would you like to change about where you live?

“It is difficult to sit down in my bathtub, so I use a shower bench. I would like to have the type of tub you step into.”

Community Life

What is the thing you enjoy most about your life in the community?

“I can do anything I want. My friends are like family. I like helping the manager with the yard work and I help to keep the laundry room clean. I go to visit my grandkids in Northern California and relatives in Spokane, Washington.”

Do you get to go out and “do things” in the community?

“I go to Weight Watchers and to visit some close friends often.”

What are your favorite things to do?

“Cross stitch.”

Employment

Are you working? If you are working, tell us a little about your job?

“I don’t work anymore. I did work in a factory in Beaverton for 17 years making soaker hoses. I was on my feet for eight to 10 hours at a time. I also worked at St Vincent de Paul and worked up to a line supervisor.”

(She cleans the homes of two friends and house-sits when they are gone. Another friend is very ill and Sharon checks on her daily. She rides the city bus.)

Are you working at a job where most of the other individuals are also people with disabilities?

Do you have assistance on the job—like a job coach or other aids?

What do you like about your job?

What would you like to change about your job?

National Council on Disability • 1331 F Street, NW, Suite 850 • Washington, DC 20004