Research on Employment Supports for People with Disabilities: Summary of the Focus Group Findings. Parental Expectations and Teacher, Mentor and Peer Support

The family experiences of focus group participants varied considerably, with some participants reporting that their parents were particularly supportive, while others reported how they had to succeed despite a lack of support (or even outright discouragement) from their parents. Among participants whose parents were supportive, many said their parents encouraged them to accept their conditions, to make realistic choices, and to have high expectations of themselves:

  • "I was encouraged by the family. There was never any expectation that I wouldn't work."

  • "My parents were the ones who originally put me to work, and they always believed in me. In fact, they put me to work way back when I was two years old. My father did lawn jobs and cleaned houses, and anything I could pick up, that's what I did. He taught me to roll trash cans and everything else. I did everything and anything."

  • "Where I think my parents really helped was that I was required to be a responsible person in the household. I had my own chores. I didn't get any special treatment and I started learning how to make money early. My parents would take me down the highway [in our rural area] when the walnuts started dropping, and say, ‘Here are some gunny sacks,' and I'd have to fill them. I'd make money that way…I [was] learning early on -- just as anyone else with or without a disability -- the importance of work and learning. I wanted spending money, and guess what? They weren't going to hand it to me for nothing, so I had to earn it like my other siblings earned their money."

  • "There was always the expectation that I would do well and I would excel. I suppose in retrospect that was a good thing…I have a great-grandfather who was a founder of a university, do you expect not to [go to college]? Are you kidding! Oh, God! So that pressure was there. The motivation and support off-and-on was there, too. So, yeah, the extended family, as you say, and [my mother's] friends and my father's friends, on both side of the family they sort of expect that you will do well whatever you do. They didn't care [what it was] but whatever it was you better do well."

Others said their parents were important sources of emotional support and encouragement:

  • "My family was very supportive. [They told me] that I could do anything I wanted to. They were very helpful in keeping me emotionally set to go through life."

  • "My parents wanted to make sure first and foremost that I had as much normal experience as everybody else. They didn't want me treated special, but at the same time they obviously were concerned with my safety and well-being. So, they outwardly tried to encourage me to do as much as I felt I could do and not to worry about anything, and if I had a problem I'd come to them and they'd work it out. They're overall very supportive."

  • "My mom was a real fighter for me and we got my doctor involved, and my therapist, and my physical therapist, and everybody fought [for me]."

Some participants struggled with parents and family members who fostered a sense of dependence and disability:

  • "I had no idea what disability was until my mother said to me one day, when I saw the other kids playing, ‘I used to cry because you wouldn't get to do that.' [I remember thinking], ‘Why?' At that point I knew there was a difference. There were hospital stays, surgeries, other things like that until the time I got to be about 15. Everyone was doing things for me, putting [my] clothes on, and all of [the] stuff that I really wanted to do. Nobody would give me a chance to do it. It got to be rather awkward around puberty, so one night after a fight, an altercation between my mother and I, she said, ‘Well, I don't want to do this. I don't want to put your clothes on for you no more. And I said, ‘I didn't ask you do it in the first place,' and I've been doing it ever since. But coming from that background of having people do it for you and then finding out you can do it yourself, it's made me more conscious of the ‘super crip' mentality. I pushed myself way too hard."

  • "I was so sick when I was younger that my parents couldn't even envision any possibilities for me as I got older, so they never encouraged me to do anything. They figured, Why bother? I think it was hard for them to give us what we needed because they didn't understand it and [they'd think], ‘Well, you look fine,' but I'm not. I don't think they knew if I was lying or was trying to make excuses to not go to school."

  • "People didn't think I'd amount to much, neither of my parents expected me to graduate from high school or go to college."

  • "I was never expected to make a lot of money. You were supposed to do just a minimal job."

Three participants spoke about parents' low expectations or denial of the disability in cultural terms:

  • "I was born with retinitis pigmentosa, [and] everybody looked at me and they thought I was a normal child. They never thought I had a visual impairment.…I was born and raised in East Los Angeles. We were from a very poor family. My parents didn't have education. My mom dropped out of high school. She only completed the eighth grade and that was it. My dad came from Mexico. He said he made it to the sixth grade elementary.…In our culture, I had two strikes against me. I was not only a girl child, but I had a disability, which they couldn't identify. [For someone like me, school] was considered an extracurricular activity.…The reason my parents never knew I had a visual impairment at home was [because they didn't even notice] if I didn't read a book or read a paper, they didn't care. It was not important. They didn't have that, so they weren't expecting me to have that."

  • "My mother was born and raised in Korea. And if you go to Korea, you don't see handicapped people. They're either hidden away or sent to the country I guess, whatever, but you didn't see them. [For Asian-Americans,] it's a big thing -- number one -- to deal with someone who's handicapped in the family. I think your expectations as a parent, you lower them. You hope the best for your child, but you also think what the reality is probably going to be. They're never going to be able to support themselves. Who's going to fall in love with a person like this?"

  • "My father, well, we don't get along. When we see each other, he says, ‘Why should you take medicine?' because [in] my culture, people like my family don't believe in medicines. He's telling me, ‘Don't take no medicine.' Sometimes he tells me I'm faking it, that I can do better things, that I just sit around."

A number of participants discussed how in early childhood or at disability onset they developed a strong determination to succeed despite the low expectations of others. Rather than accepting the low expectations of others, including parents and teachers, they became intent on proving them wrong:

  • "My family was basically [thinking that] I'm going to be bedridden for the rest of my life. That's how they looked at it. My parents said, ‘You can stay here, we'll take care of you, you don't have to ever work again, don't worry about anything, we'll take care of you…I was still in the hospital, and I told them, ‘There's no way I'm allowing this. I have to take care of myself.' So I did. It did drive me, when I did start working, to go harder, and make sure that I achieved it. I know my life's a lot harder, so I gotta work harder. [We have to start getting ready] a couple of hours [early just] to have a nine-to-five job. So, our life is a lot more difficult. But, I'm willing to make the adjustments. It's all about getting used to your new lifestyle. Just gotta adapt. It takes time to get used to a new way of life, but it can be done."

  • "[My parents told me,] ‘I don't know why you're going to school. You're never going to get a job.' [So] those were the spots where defiance was the mode."

  • "[I learned to believe] that I have to be better than other people, because it's important because people look down on people with disabilities already."

  • "I had to get away from my family, basically, my brothers, my sisters, everybody because if I'd stayed with my family, I'd have a sighted guide forever. Couldn't walk down the street by myself or couldn't do anything, basically. [According to them,] I always had to have somebody."

Many identified one or more teachers as having played an important role in motivating them to succeed, and that the most influential were those who encouraged them to develop solid academic skills, held them to high standards, and encouraged them to be self-reliant:

  • "The teacher I had that from day one just kept saying -- we, all of us knew that we would be in college. We knew there wasn't any other choice and she'd shoot us if we didn't go. It was just a given from the time I was -- well, about six years old. I had her starting in first grade."

  • "My elementary school teacher. He was the kind of teacher [who] kind of knew your limitations. And if he knew you could do it, he made you do it. And I feel like he's the one who gave me the background that I have. He told me, ‘Either you do it yourself or don't expect [it]. Don't depend on anybody. If you can do it, do it.'"

  • "Maybe my mentor was my elementary school teacher, and I remember, he always…told us to always depend on yourself, never depend on anybody else…I think he encouraged me to do the things that I do."

  • "I went to a deaf school. [My teacher] said, ‘You can become a teacher, you can become anything you want to be. No one can stop you from your goals. One thing [she] emphasized was writing skills, and reading skills. And attitude. Those three things my teachers really stressed on me."

  • "[I]n sixth grade I had an amazing teacher who came from teaching special education…And, he saw me in his class and he just came up to me and said, ‘I'm going to let you help. If you have a day where you feel like you can, I'll let you pass out papers. I'll let you collect papers. I'll let you do whatever you feel you can do. …And, so a year of that, I got back a lot of my self-esteem. Then, I just kind of moved on from there. [In general,] my teachers were actually, I guess, really advanced for the time and they allowed me to stay in the [regular] classroom. They made accommodations for me. [They saw] how depressing it is when…all your friends are laughing and joking and walking out the door to go to lunch, so they allowed me, every day, to pick one or two friends to stay with me, [which everyone considered a treat]."

  • "My teacher in junior high was a really great mentor for me because she always encouraged me to try anything, to do whatever I wanted to do. 'Do the best that you can do. It doesn't matter whether you can see well or not, that shouldn't be the obstacle. Just go out there and follow your desires and your dreams, whatever your interests are.' Encouraging me to go to college, get an education because that is what's going to get me a better job, get me through in life."

At least two participants also described important experiences with teachers who served quasi-parental roles and provided emotional support:

  • "There was just a lot of encouragement, a lot of support, letting me know that I could do it. 'Cause I had a lot of stuff going on emotionally with me. When I was in that classroom, I guess it was the end of my high school years, I got pregnant and had an abortion, so she was there for me through that. She was actually at the hospital with me…Definitely, she went beyond being a teacher."

  • "I had an art teacher in high school. I was always smart but I would just stay quiet and not draw attention to myself, and I guess in her class, she was kind of Bohemian, you know, a Carol King kind of woman. So I was allowed to let go…They were going on a school trip, and she was like, ‘Oh no, you're going. We'll find a way. Even if the boys carry you up on the bus, we'll find a way to get you [there].' She took me to games and things in New York City, and the guys carried me on the bus and everything. I always just admired her. She was free-willed."

  • "I would say towards the end of high school, one of my Special Ed teachers -- in fact we still talk today -- was very supportive of me."

  • "My special ed teacher when I was in the 5th grade was a mentor. She took the time to teach me academically [and about] art and music…She is still in my life."

5. Other Supports

Several other supports were mentioned by focus group participants as being useful during childhood or at the onset of disability.

Assistive Devices. Among participants who reported using adaptive equipment in school, all had positive experiences. One participant was able to take driver's education in high school using a modified vehicle:

  • "They had the adaptive cars, so I actually learned to get out on the road and drive in there. So I felt like I had a better high school education as a result of my accident."

Another described a variety of supports that were helpful:

  • "I had problems with putting things on paper [from] my head. I had to use a tape recorder, I had to take physical therapy, speech, and my mom had me take dancing with my classes and stuff like that…It was the teacher's idea [to use the tape recorder]."

School-Based Work Preparation Programs. A number of participants in Seattle/Tacoma, Newark and Los Angeles participated in school-based work preparation programs and had generally positive experiences. One participant said she had enrolled in a 60-credit childcare class offering comprehensive information about the childcare industry and training to be a childcare specialist. She said her school paid for this class, and she was pleased with the training she received. Another participant said he enrolled in a school-based work program that included interviewing skills, which he said was useful in preparing him for subsequent job interviews.

Many described participation in school-based vocational programs, which typically provided useful practical training. For example, one participant, who graduated at the age of 20, attended a vocational high school and pursued a janitorial track. He said that he had held an after-school job as a janitor at the high school, which he believes may have been part of a work preparation program. Another individual worked as a busboy through a high school-based program. A third described his experience with a program that taught him a variety of skills:

  • "When I was going to school, they started putting handicapped kids into [a school/vocational program] and I was going to school, and I was sorting stuff out and…nuts and bolts, and right before I graduated in there, I [learned about] painting, spray painting cars, or a bumper, and it was real interesting. I learned a lot. I did dishes there. I took wood shop. They put you out in the community where you're helpful…It wasn't in a class. It was a trade for the school…where I went to school was…when they take you, something where you know how to do really good, and I was spray painting, and the guy was there with me, making sure I did it right. That was the neatest thing I ever did."

For one participant, junior ROTC classes eventually led to a career as a health care administrator following the onset of disability:

  • "So in high school we took junior ROTC classes and the closest to medical training was probably when we used to have medic courses, we used to do CPR courses, we used to always volunteer, go down to Red Cross to watch them give blood, see how they drew blood and see certain other tests. That would be the closest influence to how I ended up doing what I do now."

Two participants in one focus group said they took useful courses in money management in school, which have assisted one of the participants in his current job:

  • "I think the whole course was a learning experience. We learned how to write checks and we even got to tend stocks we would follow."

  • "I had the same thing. [We lived in an apartment, figured out] living expenses, food, gas, electric, how much it would cost. We also had to figure out how many hours we'd worked. [This class] has actually helped me out now because it helps me figure out how many hours I worked even if the hours aren't in front of me on a clock when I punch in."

Finally, several individuals had informal "work-study" arrangements at school and in summer programs. For example, one participant said:

  • "I would help out the secretaries, and then at the summer camp…they would give us jobs…like when I worked filling in when people bought things at the canteen."