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REPORT OF FOCUS GROUP ACTIVITY
2004-2005

Research Utilization Support and Help
National Center for the Dissemination of Disability Research

1. RESEARCH OBJECTIVES

The objectives of this research were to:

• Assess the extent to which people with disabilities seek out and use outside information to make decisions in their lives
• Assess how people with disabilities value disability research as something important to their lives
• Establish how people with disabilities access information
• Identify barriers to obtaining information experienced by people with disabilities
• Determine how people with disabilities would improve upon the ways in which disability research is available/targeted to them
• Assess what new types of disability research information would be most helpful people with disabilities would like to see that are not currently under investigation
• Assess how disability research could better meet the needs of people with disabilities

2. RESEARCH PROCEDURE

Six 60-minute, mixed-sex focus groups with 7-10 respondents each.

Each group consisted of people with diverse types of disabilities.

Group 1		University of Illinois at Chicago

        	   February 17, 2005, Chicago, Illinois
        	   
Group 2		Access Living

        	   February 17, 2005, Chicago, Illinois
        	   
Group 3		Austin Resource Center for Independent Living

        	   May 26, 2005, Austin, Texas
        	   
Group 4		Austin Resource Center for Independent Living

        	   May 26, 2005, Austin, Texas
        	   
Group 5		DC Center for Independent Living

        	   June 2, 2005, Washington, DC
        	   
Group 6		DC Center for Independent Living

        	   June 2, 2005, Washington, DC

Demographic breakdown of focus group participants:

3. GENERAL PERCEPTIONS REGARDING INFORMATION USE

Information use and preferred resources.

In terms of general information use, all participants indicated some level of value for the use of information to guide their daily lives. According to one of the student participants, "Information is power. It is how we learn, how we discover, how we make decisions about, where are we going to go? What are we going to do?"

The topics of interest and types of preferred resources varied widely, but the theme of information use remained consistent throughout the six different groups. Information resources identified as the most helpful included:

• Community/Church groups
• Disability organizations (for example: Lighthouse for the Blind, National Foundation for the Blind, etc.)
• Doctors
• E-mail
• Family
• Independent Living Centers
• Internet
• Newsline for the Blind
• Newspaper
• Peers
• Radio
• Support groups
• Telephone
• Television
• US Postal Mail

Peers. One of the most popular information resources across the different groups and disability types represented was peer support (sometimes referred to in groups as "word of mouth"). The value of communicating with peers was exemplified by a member of the student group, who said the her real preferred source of information is a "reliable human being." Another student said, "I live a life that is very interdependent on others. I'm always going to other people for help with something or other." More specifically, another member of the student group discussed the value of networking with peers via support groups, saying:

I go to support groups. I go once a week, and I have a camaraderie with people who have similar issues as I do, and I develop connections. It's kind of like the language; you understand what they're talking about.

A member of one of the consumer groups echoed a similar theme in regard to spending time with other people with disabilities at the local Independent Living Center (ILC), saying:

I am a retired veteran, and I go to the VA for PTSD [post-traumatic stress disorder], but the reason I say that I come to the ILC is because this allows me a place where I can vent my disagreement with a whole lot of things that these people without disabilities, they don't understand… I'm very, very happy to be in the company of fellow people with disabilities because it makes me feel more comfortable.

Yet another consumer participant noted:

I also rely on peer support. I have met a lot of people within the community, and I'm a member at the bi-polar support line, and I particularly go to those people first because I know them better… Knowing I'm not alone helps.

Family, doctors, and organizations. Personal contact with people other than other people with disabilities was also frequently cited as a preferred method of obtaining information. One consumer noted: "I don't use computers that much. I have my daughters and my wife." Another consumer indicated that she relied mainly on her counselors at the local MHMR office while yet another stated: "I ask my mental health and health professionals. I'm bi-polar, drug and alcohol, and post traumatic stress disorder, and I go to the bi-polar support group."

Everyday life. Much of the information people reported as important to them did not have to do with their specific disability. The indication was that, while disability undoubtedly played a major role in their lives, people with disabilities are no different from anyone else in terms of their interest in travel, weather information, shopping, entertainment, and other parts of everyday life. Many participants stated that information regarding employment and public transportation was most important to their lives.

Language. While only two individuals reported that English was not their first language, both members pointed to their strong preference for information in their native language. One of the members stated that, "I prefer the information in Spanish. My English is limited… Generally, I prefer my language of Spanish."

Information decides the resource. Two participants noted that the type of information resource used would depend on the information being sought. One consumer participant said: "Newspaper, Internet. I'm looking for a job right now. Networking through people that I meet. It is not really one way over another. It is just the way it flows." Another consumer participant noted:

I like to use the Internet. You can get a broad range of information that way… I think libraries are good too, because they have magazines and periodicals that you wouldn't necessarily have access to on your own. It just depends on what you are looking for because you can get good information off the radio, too. What I'm looking for determines how I look for it.

Use of the Internet as an information resource

The vast majority of participants across all groups identified the Internet as an important tool for obtaining information. In particular, the Internet was identified as a great way to network with other people with disabilities and acquaintances. Two consumer group members stated that the Internet was how they kept in touch with friends and friends from school. One student participant said that she used the Internet to meet other people with disabilities when she moved to Chicago. Three more of the student participants identified Internet discussion boards as important sources of information. One of these individuals stated:

There is a national foundation, and they have a discussion board, and I am extraordinarily connected to that discussion board… And I (was able to read) tons of experiences from people all around the world. And this impacted how I spoke to doctors.

The Internet was identified as a tool for accessing information for everyday living, as well. One participant mentioned that she takes care of her personal banking and bills online. She and another consumer participant said that they used the Internet for information about housing issues, and another two members identified the Internet as a good place to look for employment information. Two individuals stated that the Internet was a good place to search for information to find an attorney. One participant stated:

I use it for information about, not necessarily about my disability, but how to obtain employment, using the Metro to travel, how to get places, and to find out about programs for people with disabilities. Stuff like that. News and jobs, and how to apply for jobs, and travel, and things like that. There is good information, and it seems that I'm always finding a new source.

However, for as popular as the Internet was reported to be, two members spoke of online resources with skepticism regarding the veracity of information. One consumer member indicated her use of the Internet to find information regarding the risks of certain prescription medications. She stated her perception of such information as: "One time, they will say, 'It's not so bad,' and the other time, they will say, 'Oh, they're going to kill you.' So, it can be confusing."

A consumer participant from a different group highlighted a similar concern, indicating that online information about cerebral palsy was inconsistent from one Web site to another. She said that people looking to learn about cerebral palsy on the Internet encounter different descriptions regarding how the disability affects people and that it was up to the user to piece together the information to be able to understand the condition.

4. PERCEPTIONS OF RESEARCH AND ITS USE

Perceived importance of disability research

Most of the participants shared a general sense that disability research is a good thing. However, most participants outside of the student group knew very little of the nature of any actual disability research and, in most cases, associated the term "disability research" as the equivalent of "disability services," which included job training, housing assistance, public transportation and other practical everyday life issues. In addition, numerous participants voiced concern and frustration with the tone and direction of disability research. The noticeable theme of these comments was that the most useful information to people with disabilities would be practical research that could be applied to their daily lives, again in terms or gaining employment, public transportation issues, and other everyday issues. Beyond such preferences, the common impression was that research was certainly necessary and that more should be funded.

Value of research information. Most participants identified a great value on research information and a desire for access to more information to help them in their daily lives. One consumer member belonged to a disability advocacy organization. She stated: "If I had more information, it would make life easier because, when we go advocate for certain things, as activities, the more information that you have, the better off, the easier it is going to be."

Another consumer member from a different group said that research was very important to her "because if there is not research then how can you test something to know that it is better and improves our lifestyle?" A student member suggested that disability research information is of great value to people with disabilities "depending on how it is used and what type of information that it is."

Locating research. Many participants across the different groups indicated that, while they feel that disability research is necessary and helpful, they did not know where to go in order to locate such information. One student participant stated that "the problem with (serving) people with a learning disability is unawareness of assistive technologies." He further noted that assistive technologies are widely accessible and very affordable to people with dyslexia such as himself but that people simply don't know about these products. Another student member noted "locating appropriate resources is not always the easiest task." A consumer member framed the issue in terms of housing services:

If you don't know where to go to apply for housing or who can help you apply for housing, you need that information out there to where you can go get it. And if you don't have a computer, you've got to rely on hearsay or different groups to help you out.

Another consumer member from the same group indicated frustration with not knowing how to locate support groups for people with his disability and that his lack of knowledge and confidence in locating such resources contributed to what he called a "negative attitude toward my disability."

Awareness of research. It was evident among participants that, in addition to not knowing how to locate disability research, there was a pervasive lack of knowledge about any specific research addressing the issues of their disability. According to one consumer member, "As a deaf person, I don't know what research out there might benefit me." In a different consumer group, one individual stated, "I really don't know as far as who is researching anything about mental illness. I would like to know that." Another individual with mental illness in the same group concurred that she, too, had no idea what disability researchers were working on right now that could benefit her. One consumer, again associating "research" with "services," indicated frustration with his lack of knowledge about services for which he is eligible. He said, "I didn't realize I qualified for it, a cognitive therapist. Well, now there is the issue of who is going to pay for this thing?"

Mistrust of research and credibility issues. Several group members discussed a feeling of ambivalence and skepticism toward researchers, their motives, and the work produced. Of these participants, the consensus was that people with disabilities need to look out for themselves and question research findings before accepting them as facts to use in their lives. One consumer member stated:

Everybody has a hidden agenda. Who funded the project? What was the purpose? What are they looking for? What are they getting out of it? You've got to look at all of those things to even decide. I mean, yes, it's research, but is it even worth looking at? Because it's hard, one-sided depending upon who's the funding source and things like that.

A participant from the student group added further context to this skeptical attitude toward research, responding with the following:

I think that there is a difference between a medical consumership and social consumership. And I know, for me, that's kind of a weird gray area because disability research like, for example, cochlear implants, and is that a medical thing or a social thing… So I have a sort of ambivalence toward disability research in that way. Like, what are you doing and who are you getting that information to? What is it being used for?

Another student described himself as a "critic" of research and explained his position by asking, "If you are intending to (conduct research) for the betterment of whatever cause you are talking about, how can you do it when you are addressing only a minority of academics?" The same student later stated:

My take on research is that it was born in academia, and it has remained in academia, and although the government has pushed strongly for the dissemination of findings, where those findings are disseminated and how they are used becomes a different story.

A consumer member from a different group also pointed to his skepticism with the dissemination and utilization efforts of government-supported research efforts. He stated the perception that practical application of research is "almost non-existent" and that the dissemination of research is generally of poor quality.

Awareness of the National Institute on Disability and Rehabilitation Research

An overwhelming number of focus group participants reported that they had either never heard of the National Institute on Disability and Rehabilitation Research (NIDRR) or, in the instance that they were familiar with the name, had no idea about what type of work NIDRR supports. Interestingly, all eight student participants knew of NIDRR and were familiar with the type of research projects currently being funded. However, among the other consumers from various Independent Living Centers, awareness of NIDRR was rare. Nine consumer members had heard of NIDRR, but of these individuals, only two voiced any familiarity with the types of work funded at NIDRR. The remaining 34 individuals reported no knowledge of NIDRR or any of its research projects.

Attitudes toward the government. When discussing NIDRR, participants often inserted into the discussion various insights into the government's role in general in serving people with disabilities. Two different participants from different groups asked if NIDRR was the same thing as the Americans with Disabilities Act, or "ADA". There seemed to be a common appreciation of the ADA among individuals from the different groups. One consumer participant in a wheelchair stated:

Things have progressed since the ADA. Now, when people make houses, they have to allow for disabilities. The doorway has to be a certain way. The doorway, when you go in, can only be so high. There are other improvements.

Conversely, another consumer from a different group shared his perception that the ADA had brought about positive changes but that public attitudes had grown complacent recently in terms of such advances. This participant pointed specifically to a lack of organized protests and stated that he felt the government should listen more to people with disabilities in order to know how best to help them.

In spite of the prevailing lack of knowledge regarding NIDRR, participants in the Washington, DC focus groups pointed to the Rehabilitation Services Administration (RSA) as a government agency with which they were familiar. One participant spoke of his struggles to obtain services from RSA. As a native Spanish speaker, he addressed his concerns to a unit at RSA reserved for serving Spanish speakers. However, he stated that he had contacted RSA twice for counseling but had received no help. The individual's interpreter and ILC counselor added that his experience was common among Hispanic consumers dealing with RSA.

Addressing specific consumer needs

A common perception among participants was that more research is needed to adequately address different consumer needs. For members of the consumer group, "more research" typically referred to more services related to everyday living. For the student group, "more research" was discussed more in terms of increased access to better quality research leading to more products and information for use in daily living.

Meeting research needs. Several participants from different groups discussed the impact of disability research from their individual perspectives. Some members suggested that their specific issues were not being addressed due to an overall lack of pertinent research. For example, a deaf consumer participant said:

Most of the research or information, I feel, is pretty limited in terms of the deaf community. Especially because it's kind of new, even though deafness has been around since the beginning of time, the research is new.

A consumer from a different group stated his perception that there is an abundance of disability research being pursued, but that there simply is not enough work dealing with cognitive disabilities available to him. Another consumer from the same group stated that, even while many people could not point to any research that has benefited them, he felt research was benefiting him indirectly in the form of products. However, he also explained that he felt research was not getting to doctors as much as it should. He said, "If the doctors don't know where to find the research… how will I be able to find it?"

Two additional consumers with traumatic brain injury indicated that the nature of their disability complicated their understanding and awareness of how disability research affects them. One of these individuals commented that not only did he did not know of any research that could help him, it would not matter if he did know about it because he would not be able to remember it. The other consumer indicated similar concerns in greater detail, saying:

I don't think there is enough research on disability, or at least for me. My disability, from day to day, is brand new. (Available information) is jargon. It is the same thing. It repeats itself. There is nothing progressing.

The participants in the student focus group possessed the greatest familiarity with disability research sponsored by NIDRR and other entities. Almost all of these student members responded that current disability research does not do a good job of addressing the issues they face in everyday life. Five students simply answered "No" when asked if research helped them live their lives. One of these five students suggested that "The problem is the disability research that we can access is not exactly the research we really need." Another member qualified her statement, stating: "In terms of it (research) leading to products I can use, OK. Otherwise, no." Only one member voiced the perception that disability research was successfully addressing his needs, and even this participant noted only that, "At times, it might."

Curing vs. improving lives. Several focus group participants spoke passionately in regard to their perception that disability research and researchers appeared to be attempting to cure them rather than accepting their limitations and working to improve the quality of their lives as people. For these individuals, life is not about their disability, or as one member stated: "Although disability and other health concerns might be important in life, we are not just about disabilities. We have other facets of our lives that we want to continue to be leading." The implication was that people with disabilities do want to simply be "fixed." Rather, they want to lead their lives like anybody else.

Five participants from three different groups made direct mention of their awareness and sensitivity to this concern. One of these members from the student group specified NIDRR in her response:

What I typically see coming out of NIDRR… it's about how we function, and "Oh, people with disabilities go to the bathroom this way." You needed a study to know that? I mean, it's like, information is used to make us something that we're not. It's almost like trying to cure us. That's what it feels like when I read it, and it's very academic, and it's very inaccessible to me.

A consumer participant stated that she did not think that there was enough research but that the research she has seen is "offensive." She suggested that researchers are not trying to actually help people with disabilities so much as trying to make everyone "normal." She said, "To me, that's kind of like saying that there is something wrong with having a disability or condition… Sometimes I really do feel like people with disabilities don't really exist."

5. ACCESSIBILITY AND USABILITY

Barriers to accessing information

Focus group participants identified a diverse list of barriers that hinder their ability to access and use information and for research to ultimately benefit them. Members faced technological, social, and financial barriers while also struggling to understand the scientific jargon that accompanies much disability research.

Internet accessibility. The Internet was a very popular tool among most participants. Members indicated that the Internet was used to find information regarding everything from finding a job and public transportation to shopping, learning about products to treat their disability, and communicating with friends. However, the Internet was reportedly not without its limitations for people with disabilities. Participants indicated numerous problems with Web design that inhibit access, especially to persons with visual impairments. No fewer than four members from the student group along pointed to the many unresolved issues in Web design as a significant barrier. One student said that, while she tended to go to the Internet first when seeking information, she was "infuriated" by the "sloppiness" of the Web. Two other students referred to Web design as "inefficient." One of these students stated:

The way that software, the Web pages, including government, all government pages, are designed, is that you have to go through all the links that are on the Web page before you can get to the content… it's a matter of design… You know, we read from right to left. So, if the content is on the right of the screen, and the links are to the left, then the machine would read the content before the links.

The same student commented that 95% of the PDF files on the Web cannot be read by screen readers. As a result, in spite of access to technology that should result in self-sufficiency, he felt that he is more dependent on others because, "I have to find someone that can find the article for me on the shelf, someone that can scan it, edit it" so that he can actually read it. Another student indicated that Web design also complicates use of the screen enlargement program she requires. She stated that using the Internet takes much longer for her because she is always scanning through information on the page instead of being able to view the entire page. Two other members with visual disabilities mentioned that they use JAWS software but that it does not always work well on Web pages. A consumer participant noted that graphics present problems for blind or visually impaired people and that navigating around the Internet was also difficult for her.

In addition to problems for the visually impaired, three consumers from different groups commented that coordination problems kept them from using the Internet as much as they would prefer. One of the consumers said: "If I'm using somebody else's computer, I'm scared of hitting a button and erasing everything."

Several group members also suggested that the number of sources on the Internet can make it difficult to locate what you need. Two consumers noted that inconsistencies between the information found by different search engines can cause the user to spend significant amounts of time going from site to site instead of finding the information they are seeking. A third consumer also voiced concern over such excess Web searching. She suggested that the larger the Web site, the more difficult and confusing it became to locate the information you want.

Equipment. Though the Internet was undeniably popular as a resource for information gathering, less than half of the participants actually owned a computer, and even fewer had Internet access on their home computer. Cost was a prohibitive factor for some participants. Others indicated that they would like to own their own computer but that they had other places to which they could turn to access electronic media. One consumer participant said she used the computer at work to access the Internet. Several mentioned that they used computers at their independent living center while two others said that they used the computer at the public library. Two other consumers stated that they used computers while in school. One of these consumer members stated that now that she was out of school, she had to go to her daughter's house to use the computer. She commented further that:

When you are going to school, there are certain things that they allow you, like a scanner and things like that that, in everyday life, a scanner would be great for me because, I can't read my printed mail. It just seems like that's cut off because I'm not attending; things aren't accessible to me because I'm not in school. People ought not to have to be in college to get this equipment.

Marketing. Focus group participants discussed the issue of marketing as an additional barrier to receiving and finding information. The general sense was that, if disability research is intended to benefit people with disabilities, researchers should try to reach such consumers more deliberately to inform them of advances from which they might benefit. One consumer suggested that he knew that services were out there but could not locate them himself. He further stated, "Once it becomes marketed, then everyone can know about it, like in a catalogue." Another consumer echoed this sentiment and added that, while people with disabilities were certainly an audience to benefit from the research, they are not "targeted to find the information."

Two members of the student group also pointed to marketing as a barrier. Both spoke from the perspective that researchers should think about why consumers would want this information, not simply why researchers want consumers to have it. One student stated: "People must know that they have a reason to listen to it." Another student indicated that researchers could do a better job of considering what would inspire people with disabilities to see out research. He said:

NIDRR or other funding agencies would need to change the focus on like, this is not academic product. This is consumer product. If you are making a product that you want people to buy, you make it appealing to the people… And I think that's where research and academia is (missing): the consumer. We're not making that product tantalizing. We're not making that product accessible. We're not making that product marketable. And therefore, a lot of people don't look for it.

Media portrayal. While some participants took offense to the perception that researchers were trying to cure them, others pointed to the manner in which people with disabilities are portrayed in the mainstream media as an equally insulting. This issue complicated not only their access to useful information but that of the general public's as well. Participants suggested that the press was "very limited" in what they report and that, by portraying people with disabilities as a "frail," and disability issues in general as "boring," the media have given the general public the wrong impression about them. One consumer suggested that the media of today are very "insensitive" to disability issues due to a "complacency type of reality in today's society where 'If there's nothing in it for me, I don't want to deal with it.'"

The same consumer also indicated that the media contributed to the idea that people with disabilities should be cured. He said:

I'm tired of hearing how, "Well, maybe if you just have enough hope, there could be a cure for this," because when they put that out there in the media, then automatically, we're something to be fixed. They can't just accept us for who we are. They are going to fix us. And I'm sick of that!

Another consumer from the same group discussed her frustration when the mainstream media portray people with disabilities "sad." She stated:

I would like to see something where we show the public we are not sad, and we are not broken, and we do not want a cure. We want to live! And we are no different from everyday people.

Social factors. A significant number of participants identified common social attitudes treating people with disabilities as "whiny," professionally incompetent, or otherwise incapable of leading their own lives as barriers that not only shaped their social interactions but also their access to helpful disability information. Negative attitudes toward disability issues were perceived to color the types of research being conducted and, ultimately, the treatment of people with disabilities by the public that both receives and perpetuates prejudices based upon misperceptions of disability research information. One consumer participant referred to a "breakdown" in communication between disabled and non-disabled people. Another consumer participant from the same group suggested that programs are being cut because people without disabilities simply do not understand the plight of people with disabilities. A consumer from a different group stated that progress was inhibited by the "preconceived notions" many non-disabled people share about disability issues.

An unstated theme of many participant comments was the fundamental lack of respect for disabled people's capability to function along with the rest of the real world rather than outside it. According to a student participant, "We are not fully disabled people. We have a specific disability, but a lot of people don't even consider it." This sentiment represents a perception that was applied in a variety of situations throughout the different focus groups. One mobility-impaired consumer spoke in terms of her struggles to find a job and salary commensurate to her qualifications despite having an advanced degree and years of experience. A consumer participant with traumatic brain injury suggested that his biggest problem was "convincing people that I'm smart enough to do things my way." Another consumer indicated that people with disabilities wanted to be respected as people just like everyone else. She said, "We should all be equal, whether getting a job or whatever… They look at us like we're dirty, or we're trashy, or we're low lives."

A consumer from a different group stated, "When you're not a handicapped person, you have a tendency to look at it like, 'These people are whining or crying.' No, no, no. This is everyday living."

Three consumer members with mental illness suggested that social attitudes regarding their disability made it difficult for them to obtain adequate services or good information. One of these participants discussed the "stigma" that accompanies mental illness as equally problematic to her own "lack of education" in terms of receiving helpful information. Another of these members referred to the "stigma" of mental illness as stifling and added both the lack of qualified service providers and the "disrespect" from organizations, the public, and even friends and family as the main barriers to accessing information and services. Both this participant and the third consumer with mental illness mentioned above referred to the perception that the public considered mental illness incorrectly to be a "contagious disease."

Three consumer members discussed the barrier that results through the actual lack of understanding on the part of advocates and service providers regarding how to understand and treat different disabling conditions. One consumer stated: "Getting somebody on your same side to try to get the point across and explaining it so they can understand-that is a barrier for me."

Another consumer member with mental illness indicated that doctors and therapists seemed to treat them as if they were in control of their disability. She stated that it was as if "we can talk ourselves out of it, or we can deal with it with a positive attitude." A consumer in the same group also took issue with the level of understanding and treatment received from some service providers. She said "it's been my experience when I'm dealing with doctors on stuff that's important to me that they misunderstand what the disability has to do with the other regular health parts of your life."

6. INFORMATION/RESEARCH NEEDS

Clearinghouse.
A frequently repeated wish from focus group participants was that there be a clearinghouse through which people with disabilities would be able to access information on services and other information they might use in everyday life. One participant suggested an all-encompassing clearinghouse containing "a list of all the organizations in the community and also consumer education to educate people as to the resources available." Another member stated a desire for a clearinghouse "that went beyond NIDRR and included some disability studies and included some consumer stuff like technologies and clothing or adaptive equipment for bathing or cooking or whatever."

Multiple participants indicated a desire for a resource that they could call on the telephone to find out information regarding issues such as employment. According to one of these members:

What we need most of all is probably agencies… that you can actually call and go there to find out "Where can I find out if they're doing me wrong?" Or "Who do I go to?"… That's mostly what I think we need most of. Agencies that get grants that likely put out the information you can call and get the information you need to be able to live in the community just like anybody else.

Social/Cultural research. Participants also voiced great interest in obtaining more information into various social and cultural aspects of living with a disability. Some members spoke from the perspective of their disability, such as one consumer member with a mobility impairment. She said:

I wish they (NIDRR) would get more aggressive on some of the social aspects to inform some people on certain things, like what is ADA compliance for a restroom and things like that. People have gotten a little bit casual about what is usable… They need to rewrite what is ADA compliant and make them upgrade older buildings.

Another consumer member from a different group discussed a desire to obtain more information regarding the social effects of disability. Specifically, he suggested that there be greater resources deployed into the verification of American Sign Language (ASL) because, he said, "our biggest barrier is communication." He stated that deaf children miss out on communication from the time they are born. He said, "we miss those early months and years with no language, and that affects us for the rest of our lives in the future."

Some other participants were more specific in their interest, such as one student who said she would like to see more research into women's issues and disability, while others spoke in broader terms, such as "research on all of the social and cultural factors that create the exclusion of different people in society." One student indicated a specific study that she would like to see applied in the setting of disability research. She stated:

One study that I would love to see is sort of what they did during the fifties with the doll studies where they gave the kids a white and a black doll and said which one would you choose. I would love to see that done with disabled children because I think the level of shame among disabled children about themselves is very high, and you can see how able-ism has impacted the kind of education they received and everything.

Participants were interested in cultural differences and wondered how attitudes toward disability in the US compared to those people held in other countries. One member said that such information would be very valuable "because, in different cultures, they have different outlooks on, if you have a family with a kid with a disability. The atmosphere, the perceptions of that family might be different in one culture than in another."

Everyday life and services. Members from the consumer groups indicated that they would like to see more real world information available. This information would include services such as those found at independent living centers or government services at all levels. One participant incorporated a clearinghouse approach to the discussion of services. He said that he thought that people with disabilities stood to benefit from "research about that stuff that we actually need and use. You know, transportation. Then we could find it in one place. Then you would know where to look."

Other participants spoke of classes on resume development and assistance with finding work. One consumer went further to suggest more surveys regarding the vocational capabilities of people with disabilities. He stated that he would then like to see the survey information shared with employers. A participant from a different group spoke of sharing housing statistics with public policymakers in order to address the current lack of public housing. Having such information at his disposal would assist in his advocacy efforts. A blind consumer in a different group stated that a service similar to Newsline for the Blind could be created to provide job listings over the phone for the visually impaired and that such a service could make him less dependent on sighted people. Two additional consumers from different groups identified computer classes and training as something they would want to increase. Another participant stated that problems with public transportation could be eased by implementing an advisory "disability board" to guide the public transportation authority on disability issues.

One consumer suggested that more information on living with a disability would be of the greatest assistance. She indicated a value for advances in areas such as stem cell research, but she said that research into far more basic issues is the area most lacking. She stated:

I want to see more concrete, real world living for people with multiple disabilities. Everything from sex and sexuality to children to marriage to dating. Everyday life situations: Going to college. Working. Those types of things, I didn't have growing up… There is so much focus on getting well, but I think that more research and more emphasis needs to actually be on living, living with your disability, and it just being a part of life.

People with disabilities trained as researchers.Students and consumers alike suggested that disability research of all kinds could benefit greatly by including more people with disabilities as researchers. The general thinking was that people with disabilities know best how to address disability issues because, according to one participant, "only those who are in the trenches really experience the footsteps that others are walking in." Four members from different groups discussed this need. One deaf consumer indicated that he would place more trust in research conducted by another deaf person. He stated:

The people who do the research aren't deaf. If deaf people would be doing the research, I would feel fine. OK. I would read it and take what they had to say. But it's hearing outsiders who, we just don't tend to approve of that.

Another consumer discussed the need for greater representation of people with disabilities in terms of research into social issues. She asked, "When you think about it, when you are researching social situations, are you using the components of which you are researching? The actual persons with a disability? Are they actually the researcher doing the actual research?" The implication was that a non-disabled researcher would not possess enough understanding of what people with disabilities go through to produce helpful advances.

Products. A number of consumer participants offered ideas on products that they would like to see developed or marketed to a greater degree. Such products included laser canes and hats that could sense upcoming obstacles for the blind, new and innovative audio equipment to enhance hearing, and different kinds of chairs or scooters for the mobility impaired. One consumer suggested that public buses be fitted with a more accessible cord to indicate an upcoming to the driver. She point out:

I don't think that they realize that not everyone is the same height. So maybe somebody sitting in a wheelchair would be a little taller than I am and is able to reach the cord, but in my instance, it is not that way.

Public education. Just as members commonly pointed to social barriers and prejudices from the general public as significant obstacles to receiving good information, one of the most popular areas suggested for new efforts from researchers was the concept of educating the public. Twelve members from different groups directly addressed the perception that increased education for the public could help them as much as research into products and services for people with disabilities. As one consumer stated, "I think disability-related issues are human issues. They are, everybody should know this stuff and not just one particular group." A student participant said, "the main problem with disability issues is the lack of education that people without disabilities have about disabilities. And I think that until is addressed, a lot of the prejudice will continue." People without disabilities, they felt, were frequently misguided in their understanding of disability issues due to the significant misinformation passed to them. One participant suggested that focus groups regarding how disabled people are treated by "the medical profession" would provide the non-disabled with good information on what they have to go through from day-to-day.

Three consumers from the same group indicated that the mayor of Washington, DC once had his staff try to travel around in wheelchairs for a time in order to attain a better idea of what it was like to live with a disability. Each of these consumers felt that more instances of such education should occur for the non-disabled, and one stated that such an activity would let people know not only of the physical challenges but the emotional aspects of having a disability, as well.

One consumer in a wheelchair compared her situation to that of two other women in wheelchairs from the same group. She said:

I'm a lot older than Teresa and Mia, and these are, what Teresa was saying, are problems or issues that I faced when I left school. And Teresa and Mia are in their twenties, and the are still facing these issues, which is wrong. But if we had some education out there, some networking… because I don't live and breathe a cure… but if these two young women are thinking that they have issues about marriage and working, we need more research and more information out there.

One consumer participant spoke of building "bridges" of understanding between the disabled and the non-disabled. Another participant suggested public service announcements in which a non-disabled person awakes in a world where everyone else is disabled, leaving him as "the strange one" or "the freak." Another consumer spoke in similar terms and of educating the public that people with disabilities are not "freaks" or, even worse in her opinion, "special." She advocated reaching "the general public, telling them that we are just people and that it would benefit us by everyone learning that we are just like you two. We are not any different."

Two student participants identified education of families with disabilities to be an issue requiring serious attention. One stated that her own parents did not understand how to deal with having a child with a disability and that it required years of work on their part to learn and adapt. She also said she felt that "kids with disabilities are being failed in many ways." The other student indicated that research into "disability history" was a promising new area from which both people with disabilities and their families could both benefit. She stated:

That's information that I feel is invaluable to people with disabilities, because we are so socially isolated, and many of us grow up as the only person with a disability in our families. There is nobody there to teach us disability history to pass on this information.

Simplify. Students and consumers both spoke of the need to simplify the manner in which disability research is usually presented. Four consumers pointed to "volumes" of research as being difficult to understand. One these members stated, "It would be nice if they could shorten it because I've got my life, and it involves a lot of other things. And I don't want to spend half the day reading through stuff." One consumer stated that a simpler vocabulary would be easier for non-researchers to understand, and two consumers and one student both stated that they would prefer to receive research information in "plain English."

Formats. Participants also noted the need for researchers to produce helpful information in more diverse and user-friendly formats. One visually-impaired consumer stated more information was needed in large print. She said, "It's either that or Braille or tape… Everything has to be adapted for me." A consumer from a different group indicated a similar need for deaf people. He suggested more sign language videos on the Internet, since audio features are difficult for him to understand at all.

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