inDepth, Part 2

Oregon: Interview 2

Personal Information

Alice* is approximately 50+ years old. Alice is very verbal and likes to engage with people. She lives in a home with two other individuals that has rotating staff 24 hours (with awake staff 24 hours) and has a live-in. Alice has no teeth. Interviewers note that teeth were often removed if the individual bit people. We have no information whether this was true for Alice. She made it very clear that her experiences at Fairview were very bad and that she didn’t really want to discuss it because the memories upset her.

*Name changed to protect privacy.

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

“Yes, from the age of 12.”

What was the name of the institution?

“Fairview.”

(Gaines & McGruder cottage and others. Gaines was focused on very aggressive or self-abusive individuals who required one-on-one staffing. McGruder was for aggressive women. When she mentioned these names she became very agitated.)

How long did you live there?

“Age 12 until I got out.”

(She was relocated from Fairview in the late 1990s.)

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 like it there at all. Don’t want to talk about. Don’t want to discuss it. It was bad. Bad. Nobody should be there.”

(She started rubbing her face.)

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

(She didn’t want to talk about living there.)

“I was placed there after I threw my brother out a window and pushed my sister down the stairs.”

(She didn’t attend school while she was there.)

Housing Arrangements

What type of housing arrangement do you have?

“I have my own bathroom and the big bedroom.”

Are you living independently?

“No.”

Do you live with family members?

“No.”

Do you share a home with other individuals?

“Yes, I have two roommates.”

Do they have disabilities also?

“Yes.”

Is there staff to help you there?

“Yes.”

(24/7 staff, very structured and stable. One staff member mentioned that as things have been more stable for Alice, less bad behavior has occurred).

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 like that I have the big bedroom.”

(She seemed very happy about where she lives).

What would you like to change about where you live?

“I would like to live closer to Mom.”

(Her mother lives in Portland. It sounded as if relationships with Mom and siblings are rather strained.)

Community Life

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

“I like working. I like to clean. I clean toilets and sinks. I answer phones and take messages. I like doing my job and I like when people say I have done a good job.”

(Staff commented that she is very polite and professional on the phone.)

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

“I like shopping for groceries. I like getting my hair colored.”

(She participates in a weight loss program called TOPS. She was proud that she had lost weight.)

What are your favorite things to do?

“I like Blazers’ [basketball] and Volcanoes’ [baseball] games. I have a boyfriend. I have baseball cards. I like watching shows.”

(She likes watching game shows. She sees her boyfriend occasionally)

Employment

Are you working?

“Yes.”

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

“I work at SRC.”

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?

“Staff is there to help.”

What do you like about your job?

“I clean floors, vacuum, clean toilets, answer phone, and take messages.”

What would you like to change about your job?

“Nothing.”

Oregon: Interview 3

Personal Information

Jimmy* gets very agitated when people don’t understand him. He uses only a few words at a time. He gets frustrated when people ask him questions. When asked, he would look at his sister and say “Sissy, Sissy, Sissy.” He lives in a very fancy house on a golf course with one other individual who experiences autism. He has the big bedroom with his own bathroom. There are glow-in-the-dark stars and walls. The house does not look as if the residents care or provide much input into the decorations. He loves his big-screen TV and old westerns. He has all the westerns memorized. He also watches the golf channel.

*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?

(Was placed there at the age of 20 and left at age of 48. He has been with current provider for 12 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?

(His parents placed him there because they felt it was much more secure for him. He was a runner and they felt he needed a safe place to be.)

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

(Very difficult for him. He was teased a lot, but not sure whether by residents or staff. The structure of staffing and residents was always changing. Very noisy. Situation didn’t work well for him. He didn’t sleep well at Fairview. He became very closed in. He would go home on weekends and sleep. He would cry when he knew it was time to go back. He had stomach issues and then surgery. They even tried him living with a roommate by themselves in an apartment on campus. That didn’t work well at all. It was a disaster because he would run away.)

Housing Arrangements

What type of housing arrangement do you have?

(In a house.)

Are you living independently?

(No.)

Do you live with family members?

(He visits his sister’s house every other weekend. He is very excited about going to visit his sister. He was planning on going with his sister after the interview and was anxious to get moving. Put on coat and hat.)

Do you share a home with other individuals?

(Only one other person.)

Do they have disabilities also?

(Yes.)

Is there staff to help you there?

(Staff 24/7, live-in staff rotate, very structured schedule.)

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

What do you like about your where you live?

(He seems to like where he lives very much. He showed us his room. Likes to help make cookies and other goodies. He gave the interviewers cookies that he had made for them the day before.)

What would you like to change about where you live?

(Nothing.)

Community Life

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

(He can visit other homes that the provider has. Likes one-on-one time with staff.)

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

(He likes to go watch people line dancing at a local bar called the Silver Spur. Loves to go out to the casino and eat at the buffet, shopping (he repeated “buffet” several times). Going for a drive. He really enjoys it when he stays with his sister. He helps to get ingredients when she is cooking and gets a kick out of it when she forgets something.)

“Sissy goo got.”

What are your favorite things to do?

(Likes going with one of the staff to get hard candy at Dee Dee’s, a local deli.)

Employment

Are you working?

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

(He is the “official” mailman at PCL. He sorts mail [color coded] and delivers mail to different homes. Delivers mail to the Court House from his provider.)

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

(Yes, at PCL. Also does limited delivery to the Marion County Courthouse.)

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

(Staff.)

What do you like about your job?

(He really enjoys delivering the mail. Has his route memorized. They are trying to incorporate a color-coded system; he’s not too happy about some changes in the color coding.)

What would you like to change about your job?

(He would like to do this job every day. Doesn’t like days off.)

(Jimmy’s body language indicated strong agreement with this!)

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