On July 31, 2009, the United States finally joined 141 other countries in signing the UN Convention on the Rights of Persons with Disabilities (CRPD), the most comprehensive human rights treaty of the 21st century. Although most disability service agencies in the US theoretically include individuals of all ethnic, racial, cultural and linguistic backgrounds among their clients, few service providers are proactive in reaching out to refugee communities. At the same time, many service providers in the general disability sector lack knowledge of how refugees from a given country or culture perceive their disabilities, and how these perceptions influence their aspirations. Little attention is paid to disability in refugee communities in the US, and even less information and data are available about their particular lived experiences.
Cultural and institutional barriers
Preliminary inquiries with US-based service providers in the two key sectors – refugee resettlement and disability support systems – suggest that the lack of assistance given to refugees with disabilities can be traced to various barriers between refugees and US service providers. In general, they typically stem from language/literacy barriers, or cultural barriers at the community and systems levels. As a result, many refugees miss out on disability benefits and services available to them, which in turn leads to isolation, limited life options, and a diminished quality of life. A key aspect of the problem is that service providers in both resettlement and disability support sectors currently have few culturally and linguistically relevant methods for collecting information from, and data about, refugees with disabilities. Without such data, many US organisations serving refugees with disabilities are not fully aware of their specialised challenges, needs and capacities, and/or of the range of disability and rehabilitation services they could benefit from if access were better facilitated.
A 28-year-old Iraqi refugee recently arrived in Chicago with his sister. He has a physical disability that prevents him from climbing or descending stairs on his own, yet he is housed in an upstairs apartment. He needs assistance to get down the 40 steps from his apartment, and he cannot climb the stairs at the resettlement agency, which prevents him from attending English language classes or having access to other resources and activities. He is unaware of the vocational rehabilitation and training services available to him.
Because few programmatic initiatives are currently in place to respond to refugees facing individual or multiple barriers, it is critical that future research address methods to identify such individuals and provide a framework to link them with disability service providers and systems. The growing influx of refugees to the US means that the agencies providing services to them need additional resources and capacities. Even when resettlement agencies succeed in linking refugees with disabilities to services, their staff members are often insufficiently familiar with the available or appropriate options.
In addition to the systemic barriers, US disability agencies often promote values and ideologies that differ from those of the refugees, as the agencies are highly influenced by the values, policies and goals of the mainstream middle-class, white US culture. For instance, US culture is highly individualistic and its emphasis on personal autonomy and independence contrasts strongly with the beliefs of many refugee groups, which emphasise family and interdependence. As a result, disability professionals often miss opportunities to address the unique needs of refugees since they may be promoting concepts and values that are foreign to newcomer groups. Therefore, many US-based refugees may be less likely to seek, request or accept assistance from mainstream service providers.
Gap in research
Little is known about the impact of disability on the refugee experience and few refugee organisations or disability service providers capture data on this group. In the US, the goal of both community-based refugee agencies and the mainstream disability and rehabilitation systems is to reach out to under-served groups, yet refugees with disabilities remain hidden and socially excluded. One often overlooked strategy to improve this situation is for providers and researchers to encourage refugees with disabilities to share their resettlement experiences and their needs, aspirations and capacities via community educational forums and dialogue. This information may help providers to better understand their unique challenges and therefore to be better able to connect refugees with disabilities to the same type of life opportunities available to refugees without disabilities – thereby also empowering them.
To address this service and research gap, refugee-serving agencies, along with academics, training and research centres, hospitals and disability groups, are increasingly forming partnerships and facilitating dialogue about the meaning of disability in refugee communities. Through these partnerships, the various groups serve as cultural brokers, linking their refugee clients to the specific disability and rehabilitation supports, such as mobility aids, vocational counselling and rehabilitation planning, family support, job training, recreation and post-secondary education. In general, newcomer refugees under-utilise these services because of the awareness gap between the two sectors. However, training and capacity-building programmes are now enabling refugee communities to be partners in the development of services, in research and in providing training. For example, refugees with disabilities, their families or other community members may be invited to take part in advisory committees or to act as consultants to discuss conceptual differences across languages, setting the programming needs and agenda for cross-cultural disability-related issues.
Such initiatives are already taking place in various parts of the US, including Massachusetts, Colorado and Illinois. In various urban, rural and suburban communities in these areas, refugee agencies are increasing their efforts to connect their refugee clients to disability and rehabilitation services that could help them become integrated into American life. These unique partnerships all play a critical key role in brokering connections for refugee clients who have disabilities, thereby reducing the inequities they face.
Through such capacity-building partnerships, service providers are now being trained to use the Multicultural Brokering (MB) model[i] as the framework to work with marginalised and vulnerable groups, including those with disabilities. Disability and refugee providers have begun using MB to look at the cultural issues they face in their work with refugee clients who have disabilities, and with their families. In this model, a cultural broker or mediator acts to bridge the cross-cultural gap between the service provider and client when problems arise, using various types of culturally relevant outreach and relational strategies that can help to improve access and opportunities for this group.
While newly arrived refugees with disabilities need information and services to help them integrate in their new country, they often face daunting challenges on multiple levels due to differences in culture and language. The multicultural brokering framework can help providers, community groups, and systems of different cultural backgrounds act in creative ways to support individuals with disabilities, reduce barriers and negotiate positive outcomes.
In Minnesota, a Somali family with a six-year-old son with autism was initially unwilling to seek community support because Somali culture often attaches great shame to having a child with a disability. Cultural brokers and other individuals involved in the case worked to help the family in a variety of ways. For example, the family was helped to meet other Somali families in their neighbourhood who also have sons and daughters with autistic spectrum disorder and who, though they had initially been reluctant to seek outside help, were now willing to meet with other families and act as role models. The cultural brokers also facilitated new connections between the refugee families and disability service delivery sectors by educating the Somali community about disability through the medium of English language courses at the local community agency. As a result of these efforts, the family’s attitude regarding their child’s disability shifted from embarrassment to openness. The family is now more engaged in a network of similar families in the community who receive appropriate rehabilitation and behavioural services for their children with autism spectrum disorders.
Despite the dramatic increase in numbers of refugees arriving in the US in recent years, the issue of disability among refugees remains poorly researched and documented. Therefore, US-based researchers need to:
- collect substantially more specific data on the status of arriving refugees with disabilities across many areas (employment, education, assistive technology access and therapies)
- conduct more interviews with refugees with disabilities who have had successful experiences with disability and refugee service agencies, in order to develop a knowledge base that can serve as models for other agencies and systems
- conduct and evaluate multicultural brokering interventions with refugees with disabilities and their families to develop a body of evidence about this approach
- investigate current policies and practices relating to refugees with disabilities to identify what is working and what is not.
To be effective, both disability and refugee resettlement systems must be proactive rather than reactive in providing culturally and linguistically suitable services and supports to meet the complex needs of US-based refugees with disabilities. It is important for refugee communities, researchers, service providers, practitioners and policy-makers in the disability sector to bring the voices of refugees with disabilities to the forefront of US-based research and policy development.
Rooshey Hasnain (firstname.lastname@example.org) is Project Director of Capacity Building projects and Visiting Research Assistant Professor, the Department of Disability and Human Development, Center for Capacity Building on Minorities with Disabilities Research, University of Illinois at Chicago, USA.