Impact Feature Issue on Paraeducators Supporting Students with Disabilities and At-Risk

Jiang-man had always loved the annual Chinese Boat Festival. She would brighten up the moment someone mentioned that it was getting close. For weeks afterward she was only interested in recounting the day’s occurrences. While she was in school, there was so much focus on her multiple disabilities, that her cultural interests were never really part of her education. It was not until middle age, after her parents passed away, that Jiang-man’s service coordinator thought about all the planning and work that must go into the festival, and the possibility that Jiang-man could be involved. After making inquiries, the coordinator discovered that most of this spectacular event was carried out by volunteers. Jiang-man joined them.

There’s an important lesson in this story: For years Jiang-man missed an opportunity to participate in her cultural community because no one thought of it. We, as disability service providers, primarily represent white, middle class values and consequently may not think of volunteer opportunities that build on the ethnic and cultural identities of those we serve. One might wonder why her parents did not suggest the Chinese Boat Festival as a place where she could volunteer. But again, that is the thinking of “our” culture. In hers, educators, social workers, and doctors are respected beyond any other profession – if they did not suggest it, it would not be her parents’ place to do so. It is necessary to understand such contrasts between the cultures and values of those providing services to persons with disabilities, and those of the numerous groups that continue to enrich the fabric of our country.

Addressing Cultural Connections

Working with individuals from diverse cultures can be challenging for many disability service agencies because it is an area in which they are often not knowledgable or experienced. Yet, many minority cultural organizations are grassroots organizations that are thrilled to assist someone from their community in any way they can, regardless of ability, including assisting them to become more involved in the community through volunteer activities.

Over the years, the Institute for Community Inclusion (ICI) at the University of Massachusetts and Boston Children’s Hospital has learned a great deal about how people with disabilities choose to enter into volunteering, how people from different cultures regard and can participate in volunteering, and how service providers can assist them in reaching their dreams. The following are five lessons we have learned that may be of use to disability service providers seeking to work with and within cultural communities:

• Identify the gatekeepers. These are the leaders of the cultural community. They can be clergy or lay leaders, social agency or cultural organization professionals. They are the people who have “one foot in each world” – belonging to the minority group, yet understanding working across many communities and systems. Gatekeepers are crucial in helping service professionals to understand cultural differences and nuances. Further, they can assist providers in talking to families, identifying opportunities for individuals, and creating new opportunities where none previously existed.
• Understand that “disability services” may be a foreign notion to many cultures. Often minority cultural organizations say that they do not serve individuals with disabilities. Yet when the conversation is continued, it may be found that their initial response is only an misunderstanding of the word “disability.” For example, some do not understand that mental health issues may be considered disabilities. Depression and post-traumatic stress disorder are common for individuals who come into this country as refugees (vs. immigrants – who have come here because they want to live in America instead of because they needed to leave their country). Further, the meaning of the word “disability” is not necessarily translatable. Medical terms (e.g., autism, PDD) are also difficult to render into another language. Even common terms such as “developmental disability” or “mental retardation” may not translate. For example, in Urdu (spoken in Pakistan), “Pagal” is the closest word to mental retardation, yet it actually translates as “crazy.” Further, in Pakistan, a daughter who can serve tea to the other villagers is not seen as having a disability. Moving to this country she is tested and is found to have moderate to severe mental retardation. The family may not even understand the diagnosis or its implications here.
• Understand the connotations the type of volunteer setting may have. For example, in some cultures, working in a hospital is very prestigious. In other cultures, working in the sterile setting of a hospital where traditional healing is not practiced may be seen as demeaning – not something someone would volunteer to do. In fact, serving people in general can be seen as good or bad depending on the culture.
• Recognize that in some cultures, any connection to government may be a barrier. First, individuals needing and/or offering services may not be in this country legally, so they may fear any involvement with a formal agency (especially if it is state-operated). Second, they may have a lingering fear from their own home governments. The assistance of a gatekeeper may be needed to help work with families and groups.
• Be aware that in many cultures the sense of family and community takes precedence over everything. This means that volunteer jobs may need to be in the cultural community. Typical volunteer activities such as visiting nursing homes, fundraising or cleaning up the park may not be available within the ethnic community. Further, depending on the culture, the notion of “volunteer jobs” may not even exist. It may be seen as natural to care for an elderly neighbor or family member; neighborhood playgrounds are kept clean through individual effort. You may need to be more imaginative in finding or creating a volunteer position. Or you may find that your best bet lies somewhere unexpected. For example, in one Latino community, a small organization was responsible for providing counseling to troubled youth. On the surface, the sole employee of the agency really did not do his job well – he held nothing resembling any “counseling” session any ICI employee had ever encountered. But what he did do well was to mobilize the youth of the community in a huge volunteer effort to offer an annual Latino Pride day. On occasion, we just need to learn to take what is good out of a situation.

Further Recommendations

Obviously, when assisting people to find volunteer positions it is most important to determine their interests and experiences relating to volunteering and then find or develop appropriate matches in the community. For example, consider the experience of Ruan. Ruan is a young woman with developmental delays and a father who has multiple sclerosis. Her family is very involved in fundraising for the Multiple Sclerosis Society. It is her personal experience with her father that has led to her annual involvement at a bicycle race fundraiser in Martha’s Vineyard. Although she volunteers only once a year, the effect of the day is long lasting as is evidenced by her enthusiasm each time she describes it. Further, because she wants to be a country western singer and she knows that her favorite group (Diamond Rio) does a lot of volunteer work, she has a deep-seated desire to volunteer. Ruan is also the recipient of volunteering in the form of a “best buddy.” Since she is getting older now, she has become interested in evolving into the kind of person who provides this type of service to someone else instead of always remaining a recipient. To this end, she has taken a volunteer position at a summer camp where she can take the part of a “big sister” to some of the campers. Because of her personal life experiences, Ruan has chosen these specific volunteer outlets.

As human service providers, we can assist people from diverse ethnic and cultural backgrounds to participate in their cultural communities and the broader community through volunteer efforts. To do this we must forge connections not only with the gatekeepers and organizations of cultural minority communities, but also with organizations which assist people in arriving in this country (e.g., Immigration and Naturalization Services, local refugee services agencies). Most importantly, it is crucial to remember that each service provider has his or her own cultural and class biases and limitations, and we must continually strive to broaden our horizons in our search for what is possible.

Cheska Komissar is Recreation Specialist, Maria Paiewonsky is Training Associate, Debra Hart is School and Community Projects Coordinator, and Rooshey Hasnain is Training Associate, Institute for Community Inclusion, University of Massachusetts and Children’s Hospital, Boston. They may be reached at 617/355-7443 or debra.hart@tch.harvard.edu.