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National Service and Inclusion Project

Inclusion: The active engagement of people with disabilities as service members in all levels of national and community service
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Photo detail of hand holding penField Essay

CHAPTER 3
Disability Awareness: Identifying Barriers to Inclusion

  1. Disability Awareness
  2. Attitudinal Barriers
  3. Economic Barriers
  4. Physical Barriers
  5. Accessibility Resources


Disability Awareness:

Disability awareness involves being able to identify the barriers that deny communities the contributions of people with disabilities.

Disability cuts across all socio-economic, racial, ethnic, cultural, and demographic categories. Disability is a large and diverse classification with multiple definitions and changing terminology.It is unreasonable and unnecessary to expect programs to become experts on all disabilities. There are visible and hidden disabilities, which include physical, cognitive, mental/psychiatric, developmental, congenital, and acquired disabilities. There are legal, economic, and medical definitions and, however we feel about labels, access to legal protection, services, and benefits frequently depend on them in this society. Disability is frequently discussed as a problem that needs to be dealt with, overcome, or fixed. It is more accurate to see disability as one aspect of an individualâs life experience and to focus on the societal barriers that impede people with disabilities.

There are certain non-negotiables: service programs are required by law to provide equal opportunity to qualified persons with disabilities. But there is another compelling reason to strive for inclusion: people with disabilities have skills and energy to contribute. Service programs are in a great position to engage that energy; and to do that, barriers must be understood and negotiated. When we consider all that can be done in so many communities by the millions of diverse individuals with disabilities, it becomes clear that barriers are a national problem. The first step in removing the barriers is to identify them. National service participants identified several challenges to inclusion, in particular attitudinal, economic, and physical barriers.

Attitudinal Barriers:

Attitudinal barriers are ideas, fears, and assumptions that impede meaningful communication between people with and without disabilities and prevent people with disabilities from participating fully in society. Most attitudinal barriers are passively learned; unlearning them takes effort and interaction.

A long history of institutional segregation and stigmatization has limited meaningful interactions between people with and without disabilities. Disability educators never fail to mention the attitudinal barriers that impede inclusion and persist despite the removal of more obvious physical barriers. Steve Hoad described how fears that come from inexperience can start things off on the wrong foot:

People get excited and upset and feel out of place when they meet a blind person or a disabled person of any kind. And they feel as though there is something that they should be doing, and their mind is rushing to figure out what that something is. And the unfortunate part about all of that is a lot of communication is lost because of that unsettled-ness, that uneasiness of the public.

His view, shared by others, is that the inclusion of people with disabilities and the visibility of people with disabilities as leaders in communities will change these attitudes. Ellen Whipple, a first grade teacher who hosted foster grandmother Florence Styer, spoke of the fears that she initially had when she learned that Florence was a wheelchair user:

I thought, I have all these children here and so many needs of the kids, and now I'm going to have to deal with someone else to help out. So over that weekend I worried about how it would be·well until Grammy came in on Monday. After she'd been here an hour I knew this all was going to be okay. She is one of the most independent women I have ever seen. She just had that sense about her. She knew when the kids needed help. In the classroom we only made a couple of slight changes to make wider spaces for her to wheel through. She would wheel right over to the kids. It came time for lunch that day, and I made sure to stand by her and I said, I'll carry your tray for you." And she said "No. I'm fine."

Florence served for four years as a foster grandparent. When she passed away unexpectedly last year, students and staff at Penns Creek Elementary memorialized Florenceâs many contributions by making a poster celebrating her service, planting a flower bush in front of school, and establishing a fund that was used to purchase books for the library in her name.

Arline Shier and Jean-Richard James Méhu, both of whom acquired disabilities as adults, had particular insight into attitudinal barriers. Jean-Richard told me that before he acquired a disability, he had never considered the experiences of people with disabilities. Without personal experience, there are only stereotypes of people with disabilities. Arline theorized that the desire to avoid interaction with people with disabilities stems from fears people have about becoming disabled themselves. There is also the fear of not knowing how to help someone and of saying the wrong thing. Michai Freeman said it was important to acknowledge fear on both sides:

Yeah, and understand that these fears, a lot of people have them. In the interview process I always know that people wonder what disability I have and what I can actually physically do. And I have those questions too. And even I don't have all the answers. But I want to have the opportunity to have the job and see what I can do according to my expertise or my abilities. I have a resume, and I want to be able to compete with everyone.

This sentiment was expressed in many ways by others: potential participants in national service programs are first and foremost looking for opportunities. Assumptions about what people with disabilities can and cannot do threaten equal opportunity.

Raymond Garcia is currently getting his second Bachelors degree while providing service that includes directing an educational public access show and teaching production in an after-school program. Raymond said people frequently assume that he has cognitive disabilities and that he will be unable to perform difficult tasks which have nothing to do with his physical disability. Raymond said he has no problem asking for help with the things he cannot do. Every participant stressed the importance of trusting that the person with the disability is the expert about what they can do. Tammy Dalaba and Kira Fisher agreed that the best way to promote inclusion is to listen to people with disabilities. They talked about the importance of self-advocacy, the idea that people with disabilities are the ones who can best express their experiences, desires, and needs.

I asked Steve Hoad to advise Program Coordinators who are worried about the needs of a person with a disability:

I think that, especially in the first stages of meeting a person, everybody needs to take a breath, and calm themselves down, and think for a second about nothing. And then make a general statement that you have to really believe: "If there is anything that you need, please let me know and I'll try to help you with it."

Economic Barriers:

One economic barrier is the possible loss of disability benefits as a result of participation in a national service program.

One factor that has kept people with disabilities out of the workforce is the loss of disability benefits including Medicaid and Medicare. While service is different from employment, participation in some national service programs may threaten eligibility for government assistance programs in the same way a job would. Thus, an individual on federal assistance is likely to have real or perceived economic barriers between them and service. Susan Finisdore, a disability training and technical assistance provider explained that for people who rely on disability benefits, "SSA" stirs fear in the same way "IRS" does for other US citizens. Michai Freeman spelled out how this issue might be an obstacle to recruitment:

A lot of interviewees may not say, "what about my benefits?" They'll say, "I don't think I can do the job." But somewhere in the back of their head, what they are really saying is, " don't want to get off my benefits. What am I gonna do if I can't pay the rent?"

Congress has recently passed legislation and launched programs to address the loss of benefits, but these work incentive programs are somewhat complicated and many people donât know about them. Arline Shier took advantage of the new legislation:

I am allowed a nine-month trial work period and beyond that I'm allowed another three months to see if it's gonna work before my disability is touched. I have been able to buy into Medicaid just this week.

Service programs that are recruiting people with disabilities will benefit from some familiarity with these issues and the work incentive options that are now available. This will strengthen a programâs ability to recruit and retain participants who have these concerns.

Recommendations:

  1. Let all applicants know that national service may have an impact on benefits so the information reaches all recipients, whether or not they self-disclose as having a disability.
  2. Make sure the individual understands the potential economic impact of service before he or she joins a program. Each individual with a disability will be impacted differently, so it is important to get information from the Social Security Administration based one's particular situation.
  3. Encourage an informed decision. Refer participants to their local Social Security Administration office and other agencies familiar with the Work Incentive Program.
  4. To acquire up to date information on possible ways to extend disability and Medicaid/Medicare benefits, contact the Social Security Administration.
    1-800-772-1213 (voice)
    1-800-325-0778 (TTY)
    The website provides policy information: www.ssa.gov

Physical Barriers:

Physical barriers include buildings, transportation systems and other environments that are inaccessible or unsafe.

Physical barriers, despite ten years of ADA legislation, are still a big problem for people with disabilities who have mobility issues. Barriers that exist in a service program are an extension of the challenges that people with physical disabilities face on a regular basis. Physical barriers frequently seem the most daunting and most difficult to address. There are many tools available to help programs and facilities identify barriers before they are visibly preventing someoneâs participation. Tammy Dalaba emphasized this:

You have to think about it. If you were disabled, would you want to get through a door? Yeah, you would? Well, so would that disabled person. Widen the door a little bit or put a ramp instead of stairs.

A few participants interviewed at offices or served at sites that needed modification for them to get in the door or use the bathroom. One teacher at a public school where a foster grandmother served recognized how the modifications had ramifications beyond her service:

It opened our eyes in our school to issues that we needed to deal with, not just for Florence but for everyone. We weren't aware until she came that we didn't have a ramp at the front of the school. It helped us look at the width of doors, or that there weren't appropriate heights of things in the building. It opened our eyes to things that we needed to do as a staff and as a facility to accommodate people with disabilities.

Two participants joined programs after training activities had already been planned that, in one case prevented an AmeriCorps member from attending, and in the other caused some discomfort. In both of these situations, the program coordinators were enthusiastic about the participation of the person with a disability but were inexperienced with identifying barriers. Neither of the two programs had ever included people with physical disabilities.

Transportation came up a lot in conversations with participants who have physical disabilities. The absence of accessible and reliable transportation might require accommodations such as changing the hours of service. For example, an ADD Corps member who relied on paratransit buses to get to and from her site had a very hard time reserving a ride during rush hours. Every ride needed to be reserved and the system could not accommodate every request. The host site accommodated her by changing her hours from 9-5 to 11-7. This was in a major city. Rural areas frequently have even more challenges with transportation, as was the case with Arline Shier. She was told that she was unemployable because of transportation barriers:

I could get a job that would only pay me bare minimum and my transportation costs were more than what I would make. And I would end up taking $54 out of my disability check in order to be able to make ends meet (laugh), in order to be able to work.

Despite the presence of physical barriers, many individuals with physical disabilities have been able to serve communities. Each situation required a different solution based on available resources and the flexibility of the programs. It was clear from all of the cases that the sooner physical barriers are identified the better. Many physical barriers can be addressed before a potential participant applies to a program. Each modification makes it that much easier for the next individual and program.

Accessibility Resources:

Access AmeriCorps developed an accessibility checklist for programs which is posted on the UCP website: www.ucp.org/ucp_generalsub.cfm/1/6619/6621

The Access Board has a tool that can be requested:
(800) 872-2253 (v) - (800) 993-2822 (tty)
website: www.access-board.gov

A familiarity with various barriers to inclusion should empower programs to approach participants with disabilities as resources and partners in the process of confronting barriers and identifying necessary accommodations.

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Go to another chapter in the Field Essay:

  1. Introduction: Project and Methodology
  2. Service & Inclusion: How Do These Concepts Relate?
  3. Disability Awareness: Identifying Barriers to Inclusion
  4. Reasonable Accommodation: Examples and Recommendations
  5. Advice to Service Programs: For Successful Inclusion
  6. Appendix




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©The National Service Inclusion Project (NSIP) is a training and technical assistance provider on disability inclusion. NSIP partners with the Association on University Centers on Disability, National Council on Independent Living, Association on Higher Education and Disability and National Down Syndrome Congress to build connections between disability organizations and all CNCS grantees, including national directs, to increase the participation of people with disabilities in national service.