Privacy Unbound – Personal Support Workers and Cultural Differences


When a person with a disability from one culture receives services from a personal support worker from another culture, boundaries can be compromised.

In Canada’s mosaic, we as people with disabilities certainly have achieved milestones in independent living.  We have gained the power to make choices. However, depending on assistance for personal support, often from paid strangers, remains constant, from institutionalization to independent living.  Changing demographics add a twist to our struggle for dignity and justice.

Today, with a population of over 32 million and an annual immigration target of 265,000, we live in a constantly changing diverse society. Approximately 15.5% of Canadians have a disability, and some of us came here through immigration.  We  have diverse cultures and faiths. Personal support workers who enter our homes and lives also have a variety of backgrounds.  Diversity brings differential understanding of the rights of people with disabilities and the philosophy of inclusion and independent living. It can result in the clashing of cultures, and we have to continually orient and educate professionals to respect and honour our lifestyles.

Cultural norms and values vary within and between cultures. When a person with a disability from one culture receives services from a personal support worker from another culture, boundaries can be compromised. Personal care, by nature, is intimate, and violates privacy. The receiver of service has strangers regularly entering his or her home in the capacity of professionals. As a result, these workers have access to knowledge about the home environment considered off-limits to outsiders.  Too often, they cross boundaries by making assumptions, believing cultural stereotypes and being judgmental.

A service provider may make a mountain out of a molehill in a situation that she/he is insensitive to within the cultural context of the consumer. Here’s one example: A person with a disability, on a fixed income and living with his extended family, decided to sponsor a spouse from overseas, a common occurrence among people without disabilities in his cultural community. However, assumptions prevailed, and rumours spread along the
grapevine, from front-line workers to case managers. A co-worker from the same cultural background as the consumer reports, “My colleague was talking to all the neighbours and remarked to me that the family bought the bride for their disabled son and we must rescue her” – a pivotal statement based on ableism and racism.

In many cultures, living with dignity includes living with family members. Many Canadians of African, Asian, South Asian, Middle Eastern and Caribbean origins live in extended-family households, as did their ancestors. Nina, a polio survivor and member of Canadian South Asians Supporting Independent Living, recalls when she began receiving services through a home-care agency in the Greater Toronto Area. “A personal support worker from a culture different from mine came to my family apartment to help me shower, and kept telling me that I didn’t have to live with my family.She said that I could live independently on my own. I was very uncomfortable with her because she was so persistent. I didn’t feel right about complaining about her, so the next day, I asked to change the service schedule in order to make sure that she doesn’t come to me again.”

Cultural do’s and don’ts are limitless and bound to clash when there is ignorance about similarities and differences.  We find ourselves having to constantly advocate in order to ensure that our rights to direct service within our cultural norms and values are protected.

Mazin Aribi, a founder of the Ethno-Racial People With Disabilities Coalition of Ontario and a recipient of the City of Toronto’s 2008 Unsung Heroes Award, has shared his story of independent living as a newcomer to Canada through a documentary, Three Lives: A Journey Out Of Darkness. He says that, on occasion, cultural clashes occur between his way of life and the perspectives of his attendants, including this example: “I invited some friends over for dinner. My guests offered to do the dishes. I refused and told them that my attendant would do it for me.  When the attendant arrived later, I asked him to help me clean up…He stated that the booking was just to put me to bed and nothing else. He asked me why I didn’t ask my guests to clean up after themselves.”

In Mazin’s culture, asking dinner guests to do the dishes is simply disrespectful.  Mazin raised the issue with the manager, who confirmed he had the right to make any reasonable request, and that there was such flexibility in the services Mazin receives. He had the right to direct the attendant as to what he wants done and how. “Because we live in such a diverse society, it is important to develop the skills that allow you to first acknowledge that there is a difference in cultures, and second, to respect, accept and accommodate the differences,” says Mazin. “This can happen through sensitivity training with real-life scenarios/stories told by the people with the lived experiences.”

Learning about cultural differences is not limited to the common culture or to service providers. Creating a safe space for community members to engage in crosscultural dialogue is equally important. Mazin also shares a learning experience:  “In my culture…we don’t use the words ‘please’ and ‘thank you.’ I was raised to be polite but never used those words at home, whereas [my] attendants…used such language a lot in their culture. One day, one of the attendants asked me, ‘Do you ever use the word “please”’? I answered ‘What for?’ [Then] I learned from another attendant that it is important to use ‘please’ and ‘thank you’ in our Canadian culture. I decided to change my manners.”

Agencies have to develop a cultural competence lens to ensure service delivery advances dignity and justice for all. Professional development for staff and management is the starting point. Morag Fraser, Director of Attendant Services at Participation House – Hamilton & District, says, “Understanding cultural values is essential to providing quality client-centred service. We have a diverse team of staff and invest in continuous learning to ensure that our staff are culturally sensitive and confronting their cultural biases in order to truly respect and support the choices of individuals accessing our services.”

Understanding cultural differences is a lifelong journey. Exploring individual perspectives on disability and knowing the Canadian philosophy of inclusion and independent living is essential. Service providers striving for dignity and justice for all can do so by developing cultural competence in their organizations.

Rabia Khedr, trainer and consultant with diversityworX, provides services to agencies and corporations dedicated to working
effectively with diversity.

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